Jordon John Masters

Born at 4:39PM on March 25, 2007 in Grand Rapids, Michigan.

My name is Kendra Lotterman and I’m his mom!   This is my journal.


Welcome!  Please make sure you sign the guestbook.  It means a lot to me to know you’re keeping up on Jordon’s progress.

This journal is written from the bottom up – please scroll down to the last date that you read and catch up to the top.  The newest entry is blue.  Some terms are linked to information elsewhere on the web – if there’s a term you are unfamiliar with, it’s probably “hyperlinked” farther down on the page.


Send an email to with “Jordon Updates” in the subject line to have updates emailed to you. 



Sunday, December 20, 2009

25.5 lbs (as of  12-9-09)


Near the end of summer it was a struggle to get Jordon to eat anything. He was in feeding therapy twice a week and still would only eat about an ounce of baby food or casserole puree with a fight. It was very hard for me to accept that he was just not going to eat, but it was the truth and putting him and me through two hours of torture each week was nonsense, so I removed him from the program. About a month later, in August, Jordon was hospitalized for “Failure to Thrive” and it was discovered that his intestines were herniated into his chest cavity which explained why Jordon had little to no interest in food. It required him to undergo major surgery (his sixth) to correct the problem.


After his surgery I was advised to not push the foods and to let Jordon concentrate on recovering and gaining the weight that he desperately needed. If he did request to eat then I could let him play around a bit, but eating never happened and when I asked if he wanted to eat he was never interested. So I gave up and stopped being so hard on myself for something that was not in my control.


I really struggled as a parent with the fact that my child would not eat and did not have the capability to chew, and still doesn’t. It was hard for me to see other children (especially those younger than Jordon) sit down and gracefully eat a hamburger - most of the time I would turn my head to stop the pain. Then there was playgroup which Jordon and I attended together, and snack time was the hardest time to get through. I cried when Ben’s nephew, who is a year younger than Jordon, was eating a ham and cheese sandwich. I had to walk away so no one would see.


As time marched on, the facts weren’t so painful and it became easier for me to accept. Today I still may feel envious, but I know that this is temporary and one sweet day my son will eat a full piece of pizza with few crumbs left to see!


Slowly things started improving to where Jordon will take his medication orally for his care provider at the Neighborhood Drop-in Center (not for me yet) and will request to have a Popsicle when Stevie was having one. Now he will go to the freezer and ask for a Popsicle on his own and munch on it while I prepared dinner.


Last week Jordon asked to eat and was very adamant about it too. As I had in the past I ignored him because the times before I would get him in the chair and he would refuse to actually eat. But this time he put his bib on all by himself, and when we still didn’t listen he became upset and more persistent. Ben took the tray off of the high chair and Jordon then climbed in and dug into some applesauce while I pureed the German Potato Salad that Ben and I were having for dinner. I was in disbelief that he would really eat, but he sat there for about 20 minutes eating and playing with what he was given. I didn’t coach or push or feed him, I let him do what he wanted until it was obvious that he wanted to get out of the chair.


Just the night before he asked to eat I gave him a slice of pizza, his favorite, to explore. He did not do as well with that, but it was not pureed either. I’m not sure what sparked his interest in eating but I did alter his feeding rate a bit so he has an extra two hours during the day to be a kid and not have to run around with the backpack strapped to his back. He is currently at a rate of 70ml/hour. This allows him to have a period in the morning, until 10am for a break and then again from 1pm until 3pm and 5pm until 8pm. At 8pm he is then placed back on the pump and remains throughout the night until somewhere around 7 to 7:30am. I think not being on the pump all day long allows his body to feel hunger.


Jordon’s life changed since the last update. He didn’t start school as planned because we found a wonderful three bedroom, two bathroom home in our price range and over the Thanksgiving weekend we moved. Once we were positive that we were going to purchase, we brought Jordon and Stevie to see the place. I took Jordon into his room and told him that this was going to be his room and then pointed to where Stevie would sleep when she is over. Stevie has her own room for now, but she is aware that she will share once her little sister arrives in the beginning of March. Both of our children were delighted with all the space - each child has a bedroom the size of the family room at our old house.


This home literally fell into our laps. I browsed around a bit at Ferrand Estates Mobile Home Community last summer and stopped into the office to see if there was anything available. Our budget for a new home was very small, but I took a chance. The saleswoman took my name and number and told me that occasionally residents would ask for help selling their homes, and she would call if something came up. About 2 months ago, Ben and I were out on a “date” and were discussing looking around that community again, since it is so close to his work and a bus line if we need it. When we arrived home there was a message on our answering machine that there was a nice double wide available at the high end of our budget. After seeing the home in person, which was perfect for our growing family and worth at least twice as much as the asking price, we quickly decided to purchase.


We have been here for just short of a month and Jordon has adjusted well. He has asked a couple of time though if we could go “home” but how do you explain to a 2 ½ year old that this is home? He also was excited when we were in Standale going to the bank, and asked then, too, to go “home.” Soon he will feel this is home. When it comes down to it I believe he is happy here. I think he is sleeping better, and has not been so over-stimulated,  most likely because there is more space and less clutter. I also feel that he is becoming more independent too. He will now administer his inhalers to himself (with little help) as well as his medication. He will insert the syringe into his button, push the meds, remove the syringe, and hand it to me saying, “thank you mom!” No, thank YOU, son!!! 


Well, I hope the Holidays find everyone well and thank you again for following Jordon and his progress.  With the New Year I will continue to keep everyone updated at least on a monthly basis. For now though, Merry Christmas to all and Happy New Year!!!



November 21, 2009

25 pounds


It has been a while and all has been well - I guess that’s why you have not heard much. A couple of things have changed, though.


Jordon is now a huge 25 pounds. He has fat on his cheeks, and his arms are not as scrawny as they were in the spring. I have his medications regulated now and I am very strict as to when he gets them. He was started on Neurontin about a month and a half ago - his dose slowly increased until it was just right. Currently he is at the maximum dose and so far it is working well.


Neurontin is a medication that is usually used for treatment for seizures, but it also works well for patients like Jordon who retch often without needing to. The doctor thought that Jordon’s brain was telling him to retch when his belly gets so full. Unfortunately, it may not have been accurate.  In other words, his brain was telling him to retch even when he didn’t have discomfort. Since being on this and giving Jordon his medications the same time everyday, he is doing very well and retches very little. Coughing from the cold he has had for a couple of weeks usually causes most of the retching.  Hopefully once the cold has passed he will do even better.



October 13, 2009

 22 pounds 6 ounces


Wow – I just looked at Jordon’s website and realized it has been a month since the last update!  How time flies.


Jordon is doing well and finally starting to gain weight. It took him about four weeks but he is finally gaining about a pound a week instead of losing weight. This is a huge gain and is a great start!


Already the class at Ken-O-Sha is helping Jordon talk. We go to a playgroup once a week with other children who are unable to speak well. At this group the children are encouraged to at least speak the first sound of the word of what they are requesting. I have taken the same approach at home, but sometimes it is hard because I understand what he is saying most of the time, or at least I can figure it out by what he is doing or holding. Since starting this approach, Jordon has started to attempt to say new words, like “Ba Hmmm” meaning Ben home, Gadaddy haow (Grandaddy’s house) and Ahta Haow (Auntie’s house.)  Jordon really blows me away at times when he approaches me and clearly says things like, “are you done?” “Mom, I’m taking off,” and “awe, I love you too mom.”


Jordon is becoming so independent - wanting to dress himself in clothing that HE wants to wear, pressing the inhaler to release the med into the spacer, as well as pushing the medicine into his Mic-Key Button after connecting the syringe into place – all by himself. It is great to see him excel this way. Most recently he has come to me with an extension set and syringe to let me know that he needed to be burped.


Jordon does not understand it yet, and will be a while before he does, but come next March Jordon will be a big brother!! Right now Ben and I are 20 weeks pregnant, and patiently waiting for a healthy child – boy or girl does not matter to us. I am being seen every 2 weeks by a high risk specialist to ensure that I don’t have preterm labor as I did with Jordon.


My pregnancy with Jordon was not normal.  I experienced things that I knew in my heart were not right, but the doctor told me that everything was okay and every woman feels this way with their first pregnancy. I ignored the pains and decided to trust the doctor. Big mistake – and luckily I still have Jordon. I fired that doctor for not taking me seriously. My new OB listens to my concerns and reassured me from the beginning that he would take extra care with me throughout this pregnancy to help me feel comfortable. He did warn me that this would be like a first pregnancy and I would have fears of first time pregnant women since I had such a hard pregnancy last time around that ended too soon. I don’t always feel nervous, but I don’t feel I will fully relax until I am past 27 weeks, and confident that I will carry this one to term.


Here are a few photos from the last couple of months




Photos from recent surgery








Wednesday, August 26, 2009

20 pounds, 6 ounces


Jordon had his chest tube taken out on Saturday afternoon.  Almost immediately he was happier – well, he had to take a nap to get that way, but later that night near the end of Granddaddy and Auntie’s visit, Jordon was crawling around on the bed. I would have felt horrible if he would have fallen out so I asked the nurse to switch him to a crib.


Jordon was happy to see Ben and Stevie earlier, and Jordon and Stevie even got to play a little before Jordon needed his nap. I was expecting him to be a little happier to see her but he had just gotten the chest tube out and was in a bit of pain.  Still, he enjoyed their company.


Starting Friday, feeds were increased by a half ounce every 3rd feed and by Sunday evening he was back up to full feeds and tolerating them well. The surgeon was happy with Jordon’s progress and sent us home around 3:30 Monday afternoon. I was told not to expect Jordon to gain good weight until he is completely healed, and to watch for a jump in average weight gain in about 3-4 weeks (we will have weekly weight checks at the Gerber Center.)


Jordon is still a bit clingy, but I suspect this is because he may still have some discomfort and pain. I don’t do feeds around the clock every 3 hours like we did at the hospital, but I do during wake hours and supplement with a night drip to reach the full 30 ounces he needs in a 24 hour period.


I am happy to see light in Jordon’s eyes again, light that I didn’t realize disappeared until after the surgery’s recovery. He is so happy now and laughs more, has more interest in playing with food, does not take as long to adjust to new surroundings when we go away and is sleeping through the night without waking up retching.



Thursday, August 20, 2009

Surgery Report


I have been able to recuperate from two very sleepless nights, and have found time to update you on JoJo’s surgery.


Jordon and I arrived at the hospital Wednesday morning at 6:30 and he was finally wheeled back to surgery at 8:40. The surgeon briefed Jordon’s dad and me to explain that this is a big surgery. He said that there may be a great deal of scar tissue from previous surgeries and said that there was a good chance that the intestines were connected to the esophagus and that it could create a tear when he lowers the intestines. He also said that he was going to place a chest tube near the incision for any drainage. We should expect the surgery to last up to five hours.


Jordon’s nurse reported that the surgery start time was 9:56.  Prior to starting, a couple of IVs and an arterial line were placed. She said that Jordon went to sleep happy while playing with a balloon on the doctor’s lap.


At 12:25 the nurse reported to me that there is less scar tissue than the doctor thought there would be and Jordon is in stable condition. She could not at that time give me an estimated time of completion.


Around 1:30, we were told that Jordon was out of surgery and the surgeon would be out to talk to us shortly. 45 minutes later the surgeon came told us that things went well and he is optimistic with the outcome. He also said there was a sack around the intestines that was connected to the lung but it was easily removed and the intestines went back into place easily. He placed a patch around the esophagus to keep the hiatal hernia from recurring. He will order a contrast study the next day to make sure there are not any injuries from the surgery.


Later we were told that Jordon had been having a hard time keeping the oxygen in his blood stable and because of this he would be admitted to PICU for constant monitoring. An hour passed before Jordon’s dad and I were taken back to see Jordon.  We were not in PICU until 4:45.  Once Jordon was settled and Tim went home, my mother, stepfather and I went down to the cafeteria for a bite to eat.


Jordon woke up every couple of hours last night complaining of pain, and eventually the doctor ordered a Morphine drip.  This provided more comfort and he was able to sleep about three hours without needing pain meds.


The contrast study from this afternoon, Thursday August 20, showed that there are not any injuries from the surgery and Jordon may now be on a clear liquid diet. Tomorrow we will start feeds but at a slow rate - most likely a continuous drip. In the meantime Jordon is doing well with pain management and has little drainage, so we are waiting on a room in the general pediatric unit.



Wednesday, August 12, 2009


Jordon’s surgery is scheduled for next week Wednesday, August 19. We will have to be there very early in the morning since the surgery will be around 8:30am as long as the previous surgeries run on time.


The surgeon plans on going in through the ribcage where the fat connects the ribs. Hopefully he can perform the surgery laparoscopicly, but if not they will have to make a small incision.


While in the chest cavity, the surgeon will push the colon back where it belongs and reinsert the patch that was taken out during Jordon’s last surgery. As a reminder, Jordon had a redo of the Nissen Fundiplacation last October after his stomach had herniated. The surgeon placed a patch around the sutures to ensure that the stomach would not herniate again. Since there was unseen scar tissue connecting the stomach to the esophagus, it ended up creating a small hole in the esophagus when the stomach was lowered (the surgeon was unaware of this at the time). To prevent a large infection the surgeon went back in a couple of days later to repair the hole and remove the patch. He thinks the colon herniated because the patch was removed. Had the patch not have been removed, Jordon could have gotten very sick.


Due to Jordon’s history of injury from surgeries, the surgeon will order a contrast study (Upper GI) for the day following surgery to make sure that Jordon did not have complications. Jordon will spend about a week in the hospital under the surgeon’s care for recovery. There is a chance though that Jordon will be there longer if the doctor from the Neurodevelopmental Clinic wants to keep him there to ensure that he gains sufficient weight. There is also a chance that Jordon will be able to start the Intensive Feeding Program while there too. If so, he will spend an additional 4-5 weeks inpatient after the recovery time from surgery for the program.



Monday, August 10, 2009

20 pounds  9 ounces


Jordon was admitted last week Monday after discovering that he had lost about 14 ounces within a two week period.  A series of test were completed to find a reason, but no reason could be found.


The Pulmonologist decided to do a chest x-ray to make sure there was not a problem in his lungs, which could cause weight loss. The x-ray came back and showed part of Jordon’s bowel near his mid left lung. The following day an Upper GI was performed to check the severity and to see if surgery was needed immediately. The Upper GI showed that Jordon’s large intestines have crept their way up into the chest cavity. Since his bowels are working fine, the doctors (including the surgeon, the neuro-developmental doctor who follows Jordon’s weight and development, a gastroenterologist, and the pulmonologist) got together to decide if it was more important for Jordon to gain weight before the surgery or if it needed to be done soon. It is unclear at this time if this is the reason for the weight loss but it can not be ruled out, so surgery will be sooner than later, most likely the end of this week or the beginning of next week.


At this time I am waiting for the surgeon’s office to get with me on a time when I can meet with the surgeon for a pre-surgery consultation and to schedule the surgery. I will do my best to update you on the date, but please know that if I can’t, I will keep you updated after Jordon is out of recovery.



Wednesday, June 10, 2009

20 pounds, 6 ounces


Jordon went back to the Neurodevelopmental Clinic Tuesday, May 26, and was found to have lost weight over the holiday weekend. The doctor said that if Jordon did not gain sufficient weight over the following two weeks that he would have to be hospitalized until he is at a healthy weight. I took him back yesterday, and (good news) he has gained an average of 17 grams per day. That’s about six ounces per day, and five grams more per day than our goal. The doctor was happy with this and allowed Jordon to stay home. She said that I am doing great and to keep up the good work.


I was not so sure if he would gain the sufficient weight that the doctor wanted because on May 30th I took Jordon to the ER for rectal tears. The ER physician thought that the formula that Jordon was switched to was too high in acidity and caused slower gut dysmotility, in turn causing frequent bowel movements. He contacted the Neurodevelopmental Clinic Physician and she instructed him to have Jordon switched back to the Boost 1.5 calorie with fiber. Jordon did not tolerate this well (which is the reason he was switched to another formula) and was unable to be on the drip for the time period that was specified by the doctor.


Jordon has been on Nutren Junior with Fiber with two scoops per day of Duocal for the past week and a half. He is doing well with this formula, but since it is lower in calories, he had to be on the drip 24/7. Starting today, Jordon will be on the drip for 23 ½ hours per day at a rate of 45ml per hour for 12 hours during the night and 40ml per hour for 11 ½ hours during the day. He will then be able to have 1 ½ hours during the day where he can go backpack and pump free! If he tolerates this for a few days, I will increase the day rate 2ml per hour every other day, to allow him an even longer time to be pump free. Our goal is to get Jordon back on bolus feeds. It will take a while to get there, but I feel very optimistic about things.



Friday, May 22, 2009 20 pounds


Jordon had his Intensive Feeding Therapy Evaluation yesterday. Recently he has not had the interest to eat which started when he was in the hospital in April for Rotavirus. It has been getting progressively worse. I have a hard time even getting a spoon into his mouth.


Six different people were in the room during the evaluation, the developmental doctor, a Nutritionist, an Occupational Therapist, a Resident Pediatrician, a Psychologist and a Social Worker. They asked a series of questions on his social history, and his health and feeding history going back to NICU. The Occupational Therapist did a few oral exercises with him with and without food.


Once they were finished with the evaluation they stepped out of the room and had a short conference to decide what the best treatment for Jordon is. Jordon was once again diagnosed with Dysphagia, which I already knew, but they added Gut Dysmotility.  They decided that an outpatient Intensive Feeding Program was best for him.


In this program I am first watched feeding Jordon and then for whatever time is needed, the specialists work with Jordon alone teaching him how to eat correctly. Once he has a good grasp on things, I will then be put back into the situation and trained myself. This program will take 6 ½ to 8 weeks to complete and we will be there every day for 4 feedings or about 12-14 hours. The waiting list for this program is much shorter than the inpatient of only 6-8 months. Everyone who will be feeding Jordon will have to participate in this program for some length of time, including Jordon’s Dad, Jordon’s Grandpa Lotterman, and Grandma VanDyke. I was also told that it would be beneficial for Benny to participate in a few sessions. If someone is not properly trained on Jordon’s individual feeding techniques, then they will not be able to take Jordon if a feeding needs to be given. This will put a lot of pressure on me, not having the resources for respite that I do today, but I have to keep in mind the best for Jordon.


In the meantime, Jordon will be put back into Mary Free Bed’s program twice a week, one hour sessions. The nutritionist is also going to do everything she can to get Jordon to gain weight since he will probably lose weight in the program. He has been switched to Pediatric Compleat, which is liquefied chicken, vegetables and cranberry juice. It has fewer calories, but hopefully he will tolerate this better and in time gain weight at a more consistent pace. Jordon is on a continuous drip for 18 hours a day since the beginning of last week and will be for another couple of weeks. The doctor thinks that his gut needs a break from the intolerance of the soy-based Boost which is high in calories which makes it harder to digest. Once we know that he is tolerating the new source of nutrition, he will be put back on bolus feeds.

I also found out that Jordon was approved to start a preschool next January for children with sensory issues (as long as it doesn’t interfere with the intensive feeding program.) This program is through Ken-O-Sha at the Wellerwood campus in Grand Rapids. The classes are 4 times a week and the 5th day I would participate in a learning based playgroup. A bus will come and pick Jordon up the days I do not need to be there.


Jordon is speaking more clearly and his vocabulary increases daily. Although you may not be able to understand what he is saying, he is able to put short sentences together such as, “watch Elmo all done Mom…..down,” and “I want water” or “I drink water.” He is also starting to initiate play and is getting quite rambunctious – so much fun!




Saturday, April 11, 2009


Shortly after the last journal entry was posted, the Neurodevelopmental Clinic doctor returned my call – the clinic follows Jordon’s weight and development. She is concerned that the amount of fluids that Jordon is losing is more than his intake. Jordon is already severely underweight, but it is crucial to stay hydrated, so she instructed me to have Jordon placed on Pedialite for 12 hours on a continuous drip for “maintenance fluids” and to then resume the half strength formula for 12 hours. If the symptoms have not improved after 24 hours then he may need to be placed on an infant’s predigested formula. This formula will not be sufficient to help him gain weight but it is easier for the intestines to digest and will make the recovery time shorter. She told me that Jordon can have symptoms for weeks or months – it has already been over three weeks.


I feel more optimistic after talking to this doctor. As long as I work with them and be attentive to Jordon, we can keep him out of the hospital. It will take some extra work, but it is not anything I can’t handle. I conquered all the mountains that had to be climbed and this is just a little hill.


I do however, find it discouraging that every time we get on the right path of Jordon gaining weight he gets sick and loses. I discussed this with the doctor and she said children with “Failure to Thrive” have a hard time gaining weight and lose very quickly. He is currently under the 3rd percentile on the preemie charts now weighing 18 pounds 9 ounces.



Friday, April 10, 2009


Jordon came home yesterday from the hospital but I am not sure if he will be home for long. The instructions given to me by the doctor were to keep Jordon on full strength drip until today and resume bolus feeds as normal. If he starts to have too many episodes of diarrhea then I was told to dilute his formal with half water. 

Jordon’s diarrhea started back up yesterday as soon as we got home. I called his pediatrician’s office this morning and they told me to keep Jordon on continuous drip for another 2 days at half strength. If it is this bad tomorrow he will have to be seen by the ER to make sure he is not too dehydrated – I hate to be pessimistic, but I have a bad feeling about things right now.


I will be sure to let everyone know how Jordon is doing in a couple of days. He will be spending the weekend at his dad’s.



Wednesday April 8, 2009


I took Jordon to the emergency room Sunday afternoon because he had a distended abdomen and I was unable to get any air out of his stomach when I “burped” him. There also was a bulge near his right hip and I was extra concerned because he had diarrhea for about 2 ½ weeks.


An X-Ray showed that there was a lot of air in his belly and in his intestines. Lab tests showed that Jordon was fighting an infection. A surgeon was consulted for the intestinal block, but by the time he got to the hospital most of the air that was in Jordon’s intestines worked its way out so the surgeon said that they didn’t have to do surgery. Jordon was admitted to a general pediatric floor at about 12:30 am to provide him with hydration and keep an eye one him to make sure the block does not form again.


Monday, Jordon was on “gut rest”, and clear liquids and a half formula half water drip was started for the night to see if he would be able to tolerate it. He also received half strength boluses twice. Almost immediately he started to get high fevers and the diarrhea came back, so the drip was stopped and he was back to clear liquids.


Tuesday, a stool study showed that Jordon has Rotavirus and not an intestinal parasite like the doctors first thought. This is something that children are vaccinated for but since he was on chemo he was not receiving his immunizations. He did get caught up the week before last, but by then it was too late - he already had the virus.


Since the doctors discovered that he did not have an intestinal parasite, feedings were resumed at dinner time, but his formula was held back for another night. He was very hungry and begged me almost all day to eat. He tolerated his food well and had minimal diarrhea.


Today (Wednesday) he has gone 24 hours without fevers and diarrhea, so a half strength drip was started at 10 ml per hour. Every two hours the volume will be increased by 10 ml as long as he does not spike a fever. Once he is to 30 ml per hour and doing well, he will receive bolus feeds during the day at half strength and a drip at night for 24 hours. If he does well with that, he will go to full strength for 24 hours and then hopefully come home as long as he is able to maintain hydration on his own – labs can indicate that.


I am anxious to get home, but I also do not want to have to come back, so I am not pushing Jordon or the doctors to get it done faster. He is able to communicate better now and is handling the doctors better than his last visit. I do have to remind him often to please use his words instead of screaming. He can say “owie” now and I am working on getting him to say “I hurt” and point at where the pain is. Since he can understand me, I reassure him that the nurses and doctors are not going to hurt him but they are here to make him feel better.  I do have a harder time keeping him calm when lab comes in.



Wednesday, March 25, 2009        A Day to Celebrate


Can you believe that Jordon is two already? Not too long ago I thought that we would never get out of NICU, but we did!!!


So much has happened since he was born - he has been through a lot. Six surgeries, countless hospital visits, too many doctor appointments to count and even feeding therapy. Nonetheless, today Jordon is a happy toddler. He may struggle with feeding and have a harder time communicating than most toddlers, but he sure has come a long way!


We had a small birthday party for him last weekend with just the immediate family. It was just the right size, not too many people but enough to celebrate with one person in mind – Jordon! And it sure was a time to celebrate! Here are some pictures.



Now on the not-so-fun note: Jordon was seen by the doctors at the Helen Devos Children’s Hospital Neurodevelopmental Clinic for his two year check up. His measurements were taken and recorded in his chart. He is severely underweight, weighing just 18 pounds 15 ounces – yes he did lose some more weight. He is at the weight where the doctors would recommend a feeding tube to provide extra calories. But Jordon is already being partially tube fed, so things seem to be more of a concern. They want to see him every two weeks for weight checks until he is at a healthy weight.


His regimen changed too; now instead of providing Jordon with the nutrition that he did not take during the day at night through a drip, the doctors want Jordon have bolus feeds 4-5 times a day. I have to put him in his high chair and bolus 4 ounces of his formula and offer 2 ounces in a sippy-cup. I rigged up a system to do this. I zip-stripped a broom stick to the high chair and rubber band the syringe to the pole so I don’t have to hold it. He gets a cheese puff to chew on and has to take a couple of bits of pureed food so he doesn’t think that he doesn’t have to work to get full. If he does not take the full 2 ounces in the cup after 20 minutes, I have to give it to him through the bolus. The doctor thinks that if he has a full belly throughout the day, then his appetite will increase.


Already he is more willing to eat and has even been sleeping through the night. Since he is getting bolus feeds at all meals, he does not have to be on the night drip, therefore I am not up the 2-3 times a night tending to the pump! Not to mention that he has not needed a bottle to go to sleep in the last 4 nights. It’s great.



Sunday, March 15, 2009


I was browsing the internet and found a March for Dimes site that showed that there is a march taking place in Grand Rapids about a month from now. I don’t have any more time this year as I did last, but I think it would be fun to participate in this walk. It takes place on April 25, 2009 at Foremost Insurance in Caledonia at 9am.


I set up a team and set a goal of raising $200.00. It is a small goal, but I am not sure how many people I can get to participate on such short notice. If you are interested in learning more about the walk or would like to help me reach this goal, visit . Click the “Join a Team” button. Jordon’s team name is Jordon Masters.


Everything is well on the home front. Jordon is now saying a few more words like diaper and slipper. He is not eating any better but I was told by his therapist that progress would be slow. Right now the goal is to get him to drink more formula. I told the therapist that this was not going to happen since he has little interest in the formula and he would drink juice or water all day long. She said to mix the formula with a strong juice at a ratio of 3 oz juice to 1 oz formula. He likes this and drinks about 16 oz a day. Every week I will decrease the amount of juice and increase the amount of formula until he is just drinking straight formula.



Friday, March 06, 2009

20 pounds even


Jordon is now saying about 20-25 words and identifies around 18-20 objects on flash cards. He is also learning a new sign every day or so. The next sign I would like to teach him is “sorry.” So far he can sign words like please, thank you, more, eat, milk, drink, all done, shoes, help… and he can say most of these words while he is signing.


Now that I know he can identify objects on flash cards and say the words somewhat clearly, it would be interesting to see if he could learn to say names correctly if I had some flashcards made up with pictures of the people he is most familiar with. He calls his Grandma VanDyke “Mamma”, me “Mumm”, and Benny “BehBeh” – it is so cute. Then whenever the phone rings, he runs to it saying “mamma,” thinking that Grandma is calling!!!


The service coordinator from Ken-O-Sha said that Jordon is not too far behind what most children should be with vocabulary at his age. It is almost like something clicked and he was suddenly able to say things. For the most part I have been able to understand his babble and requests by his pointing, but now he can tell me when he is hungry and when he needs his diaper changed. That’s a huge improvement!


One more thing:  I have been using the term “dysphasia” to describe a condition that Jordon has, but he has dysphagia, which is an entirely different condition. All references to the wrong term have been corrected on this website.




Friday, February 13, 2009


Jordon’s service coordinator from Ken-O-Sha made a visit a couple of weeks ago. She told me that Jordon graduated the Explorers group and will be moving on to the Sights and Sounds play group. Children in the Explorers group are encouraged to be more mobile. Children in the Sights and Sounds group are encouraged to identify objects and name the objects. This group is geared for the older 2’s, but Jordon needs a head start. We were going to wait until Jordon was more stable on his feet, because all the children in this group are bigger than him and we were afraid the he would get pushed around. But we feel that this is a good move to make. Since eating and talking go hand in hand, Jordon is not able to say many words, he is up to around 7-8 and signing a few as well. This group will help him to learn in an environment with his peers and hopefully this will be more encouraging.


Can you believe it - Jordon will be 2 in March?!! He has come a long way. He started with a struggle and still struggles with some things, but he is making improvement by leaps and bounds. I thought for sure by now I would be back to work. For a while things slowed down, but as soon as I got a resume ready, Jordon’s schedule went from one thing a week to something every day. I know that I am right where I need to be – he needs my support more than anything and I am a great advocate for him. Currently he has feeding therapy twice a week, which most likely will be for a least a year. He still may need the intensive program because not only does he need to learn to chew, he also needs to learn to take in the proper amount of nutrition to keep him healthy without the assistance of the feeding pump, and after that he will have to take some speech therapy classes to learn how to talk. Therapy from Ken-O-Sha and Mary Free Bed combined will be helpful since both programs will help him learn to talk and still take different approaches.


Next he has physical therapy twice a week. One day we go to a playgroup, which is good for Jordon to see other children and learn from them, and one day a service coordinator comes to our home and works with Jordon one on one.


The remaining day of the week is left open for me to take Jordon to a drop-in center. This is a group based program with 6-8 children in a day care setting. I am able to drop him off at 10 in the morning and pick him up at 2pm. This is good for Jordon and for me. It gives me an opportunity to take time for myself, or go to doctor appointments for me, and if I can possibly coordinate it, I will be able to go to my physical therapy, and not have to worry about finding a baby sitter. It is also good for Jordon because it gets him away from me and around children his age, and hopefully will help him to become less dependant on me and more social.



Thursday, January 15, 2009

18 pounds 3 ounces

 Jordon recently lost a pound, dropping him to 17 pounds 12 ounces, most likely because he started walking. I also was reducing the amount of formula he receives for the amount of baby food he consumed for that feeding. Since baby food has many less calories than formula he was not getting enough. At first I was reducing the amount of formula because his stomach could not tolerate a large volume, but now he is taking almost his entire bottle and a full jar of baby food and if I give him the opportunity, he will eat again two hours later.

His nutritionist at the Gerber Center was concerned with his weight drop which brought him below the 5th percentile on the preemie chart, and suggested that I increased the amount of formula I give him on the night drip. This will make up for the calories that he loses during the day from eating food. And since he is doing so well, we don’t want to push him and follow his feedings with a gavage through the feeding tube. Now that he is on a longer night drip he has gained almost a half a pound in a little over a week.

Jordon is in the second week of feeding therapy and doing really well. He has a team of two therapists, meeting with both once a week, and a dietitian, who will be assisting the Gerber Center with keeping an eye on Jordon’s weight. They gave me exercises to do at home and different techniques to try to correct Jordon’s dysphagia and to flatten his tongue. This is the second week and already he has improved more at Mary Free Bed than he did at Spectrum in the year or so that he was there. I asked Jordon’s doctor for a referral to Mary Free Bed because the therapist at Spectrum was ready to graduate Jordon from the program. I expressed my concerns to her a few times and asked if there were any tests that could be done, but she felt confident that Jordon did not have a problem. I found that striking, since he choked on everything he consumed that was not pureed or liquid. If things keep up he may not need the intensive program!!!

Saturday, December 27, 2008

18 pounds 12 ounces

Jordon had the video swallow study a couple of weeks early. The study showed that Jordon has a weak suck while using a bottle and he does not chew - he does more of a mashing motion when it comes to hard dissolvable foods. He will be starting a feeding program twice a week for twelve weeks, and he is on a waiting list for the intensive outpatient feeding therapy program. The program runs five days a week, eight hours a day for six to eight weeks. The hopes are that Jordon will be able to correct his bad eating habits before the program has an opening, which could take as long as a year. If Jordon does not improve after the twelve weeks then he will have to be pre-approved through Medicaid for an additional twelve weeks until there is an opening for the program or his habits improve.

Jordon tolerated his feeds for a short period of time, but unfortunately, that is not the case anymore. It is to the point where he is unable to tolerate the night drip. I talked to the doctors at the neurodevelopmental clinic and an Upper GI and a Gastric Empty test was completed to see if there were any problems with the last Nissan that was performed. The studies showed that the Nissan is intact and the stomach empties at a normal rate. I then asked what could be causing the retching and the nurse said that this could be more of a habit for Jordon, rather than a reaction to a problem. I will accept that for now, but if it gets worse, I will seek a second opinion; excessive retching can lead to a slip of the Nissan, and I want to prevent another surgery as much as I can.

Jordon spent a couple of days with his dad for the holidays, when he returned it seemed that his appetite improved dramatically. He went from eating just a few bites of baby food to eating a whole jar and some times more. That is almost three times as much as before!!!

Jordon not only improved with intake of both his bottle and baby food, but he also started walking. His main mobility is now walking; I think he figured that it is faster to walk than it is to crawl. It surprises me at times to see something move across the room and when I look it is Jordon walking to get a toy or his sippy-cup. He is into everything now, and I have to keep a close eye on him. He is also increasing his vocabulary. He says words like hat, kitty, get it, that, and best of all, he now calls me mom instead of dada.


Saturday, November 22, 2008  19 pounds


So, it’s been a while since I have posted an entry to this website and you may be wondering how Jordon is doing….


Jordon is now tolerating food to the stomach both orally and by the tube feedings. Even though Jordon is not too interested in consuming anything orally, he is up to full feed at 105 ml between both hard dissolvable and formula/fruit juice. I talked to his doctor about his lack of oral interest and she recommended having a video swallow study with a thorough oral motor exam. This study is scheduled for the week of Christmas and will take a whopping 2 ½ hours (he is on a waiting list to get in sooner). There is a huge chance that Jordon will have to undergo an intense therapy program at Mary Free Bed, where he will be inpatient for at least two weeks for the monitoring of Jordon’s habits and to provide treatment to allow him to consume food correctly. At this time Jordon chews little and does not rotate his tongue to move the food from side to side. As a result the food is pushed to the front of his mouth and eventually falls out before he can swallow.


Jordon was recently seen by a neurologist and the neurologist thinks that this could be a neurological issue. He is concerned that Jordon favors the left hand while eating and playing and prefers the right leg while in motion. He can’t diagnose Jordon at this time with a confirmed diagnosis, but he thinks that Jordon may have a mild case of Cerebral Palsy, which also could explain the eating challenges. After Jordon has completed therapy for his feeding issues, he would like to see him again to do further studies, most likely in a year or so.


Seeing the neurologist also makes it possible for Jordon to be treated through Ken-O-Sha for another year. If he passed the exam, then Jordon would be transferred to his home school district (Kenowa Hills), but both Jordon’s service coordinator and the neurologist are concerned that the right treatment may not be available there. So for the next year, Jordon will be seen by Ken-O-Sha and participate in the weekly playgroups which are in the Grand Rapids School district.


Before Jordon got so sick from the esophageal tear, he was just starting to walk. Since he was bedridden for almost 10 days, he lost a lot of the muscle mass he had and took a large step back. At this time, Jordon is still not walking, but he is taking a few steps together. I have high hopes (not expectations) for Jordon and am almost positive that once he figures it out, I will be chasing him around everywhere.


I am anxious to learn the outcome from the video swallow study and will be counting down the days. As soon as we get an answer, I will be sure to let everyone know.


Thanks again and Happy Holidays.



Wednesday, November 05, 2008

Since I have started feeding Jordon orally, he has been continuously retching. I called the on-call surgeon Tuesday night and he said to give Jordon a break and if he stops retching to hook him up to the drip feed that he gets in the night. He also told me to decrease the amount of food that he intakes because he has not used his stomach in over a month and it needs to have time to stretch to allow it to get back to normal.

 This morning at about 5, Jordon woke up hungry so I gave him a bottle. This bottle was smaller but Jordon was still unable to tolerate the feeding. He retched for 45minutes until I called the on-call surgeon. The surgeon told me to open the extension and let the stomach drain by gravity, and he would get back to me later in the morning once he speaks to Jordon’s surgeon to figure out what to do. Opening the port seemed to relieve some discomfort for Jordon and he was back to sleep with in 30 minutes.

Jordon’s surgeon called this morning and said to put Jordon on a drip to his stomach using the feeding pump at a rate of 25 ml per hour. If Jordon tolerates this, increase the volume 2ml a day until he reaches the full feeding, which is 35ml per hour. If Jordon does not tolerate the drip feed, then he will have to have a GJ again and be fed to the intestines until his stomach is ready for food.

I put Jordon on a drip feed as the surgeon suggested and he still was retching. After about a half hour of that I took him back off and left his extension open to empty his stomach by gravity. I called the surgeon and notified him of what I did.  An hour later the nurse called back and said that Jordon had an appointment this afternoon to have the GJ reinserted. Now Jordon will be back on the pump 24/7 and be fed to the intestines.

I'm not sure how long he will be on the pump this way, and I am really not sure if this is a great solution. Hopefully the surgeon knows what he is doing, but I am still thinking about getting a second opinion.

It is a disappointment that Jordon has taken a step back, but I was aware from the beginning that this would be a slow recovery.




Tuesday, November 04, 2008      18 Pounds even


Last weekend Jordon’s feeding pump continuously beeped with the error “Flow Error – clog in line below pump.” It started Friday night when Benny and I were out with the kids trick-or-treating. Every 5 to 10 minutes the pump would display the error, but there was not a fold in the line. So I tried to flush the extension with water, but it was clogged. I changed the extension and we went on our way but the error continued to chime, and each time I would check for a folded line and set the pump to run again. Once we were home I changed the bag and that seemed to do the trick.


Since my mother was in town and I needed a sitter, Jordon went to her house for the weekend so I could go to my dad’s 50th (whoah!!!) birthday party. On Sunday morning she called to let me know that the same thing was happening to her. I called the surgeon and he said to flush the line with Coca Cola, let it sit for 30 minutes and run the pump again. It worked until Monday morning when the error appeared numerous times once more. As I was flushing the line the surgeon’s nurse called to see if the problem was fixed, or if she needed to order another GJ button.  (whoah!!!)


Originally, Jordon was going to be fed to the intestines until he was off the Cipro. Since that could have been as soon as Wednesday, I called the clinic and bumped the appointment up to see if we could avoid a new button. As I was getting to the hospital for the X-Ray and labs which needed to be done before the visit, the surgeon’s nurse called and said that the surgeon decided that it was OK to replace the GJ with the GT and resume Jordon on oral feedings!!!!!


The day was busy, but the outcome was great!  Jordon’s labs and X rays looked good, and Jordon’s last dose of Cipro was given this morning.


He is not tolerating the feedings well, but I don’t think he is feeling good - he has been gaggy and has had a lot of diarrhea. Since he can’t vomit, each time he has a gag fit, I manually burp him using his button - which provides comfort. He rested most of the day and played little. Hopefully he will feel better tomorrow.




Wednesday, October 22, 2008


Jordon has been home a week now and is very clingy. For the first few days, I had a hard time even leaving the room. He even got upset when I would get up out of my chair to go and get something. Things are better now, so I am able to write an entry and let you all know what has been going on the last couple of weeks.


The fluid from the chest area that was suctioned out started growing some nasty “bugs”. This is because there are bacteria in your mouth, and due to the tear in Jordon’s esophagus, that bacteria escaped into his body and started growing. For his stay, he was put on vigorous antibiotics that had to be given intravenously, and Infectious Disease was consulted.


Jordon had an Upper GI last Monday morning which showed that there are no longer any tears in the esophagus. While in radiology, a GJ was placed. The surgeon still would like some more time for the stomach and the esophagus to heal, so Jordon will continue to be fed to the intestines for another 4-6 weeks.


The feedings are going well - he is no longer gagging or retching, which is a huge improvement even from the first few days after his last surgery. We go to see the surgeon on Friday to find out if Jordon will continue with the drip to the intestines all day, or if we are going to increase the rate for a few hours, then take him off for a couple of hours. We also have a follow up visit with Infectious Disease on Friday. The doctor wants to see him a week earlier than planned because she changed his antibiotic to Cipro from Augmentin. Once she changed that, I really started to feel like a nurse with a degree! I have always felt like “mommy nurse,” but with Cipro he can’t have steroids (his inhalers) or anti-acids (his Previcid) for six hours before and two hours after he receives the Cipro. He gets all of his medications twice a day, so that leaves two, eight hour windows where he can’t have his inhalers or his anti-acid. It’s tough to manage, but with the help of my mother, we created a chart that I can record when Jordon gets what, and then plan ahead for what time he needs his next medication.


Well, hopefully we are at the end of Jordon’s troubles. I spoke to the surgeon and we are only anticipating two more surgeries. One to remove the button, which will be done once Jordon can feed himself a full meal with out the assistance of the button for six full months, and the second surgery, will be to remove the hemangioma and repair the damage to his lip, which will most likely be done in a few years. I want to hold off on that until he is in school - he had been through enough so far – this can wait.


There is a one in ten chance that Jordon will need to have a Nissan repair again. The chances are the same no matter how many repairs are made, but each time Jordon had the Nissan repaired it was for different reasons. He initially had the Nissan Fundiplication in June of 2007.  In August 2007 he had a repair surgery due to one of his organs pushing in on the stomach. The wrap was a little loose and tightened, but the main reason for the surgery was to relieve the stomach from the pressure. The third Nissan was just recently performed because the stomach was herniated and needed to be lowered.


I can already see a difference in Jordon. He still may not be feeling 100% himself, but his eyes are brighter and I believe that he is feeling much better than before the operation. All I have to do now is shoot a smile at him and I get one from him right back. I really had to work to get a smile before. He is also starting to be more excited when people come to visit, and greets them with a welcoming hello!


It had been tough going through all this with Jordon, but I would not change a thing. He is truly a blessing and warms my heart every day. I am also a stronger person because of it. It is amazing how well I dealt with the 14 day stay at the hospital and the two surgeries, but then again, I guess I have had a lot of practice. I still am very grateful for all of the support I have received from everyone; I can not thank you enough. Thank You!!!




Tuesday, October 07, 2008


Yesterday (Monday), Jordon had an ultrasound to see how much fluid there was in his chest.  Later he had a chest tube in long enough for the doctor to drain the fluid. Usually, if a chest tube is placed, it is kept in place for a few days to allow drainage, but the fluid was thick enough that is was easily removed with suction. Almost immediately Jordon’s condition changed. The high fevers went away, he no longer requires oxygen, and he is even starting to vocalize rather than just whine.


Today Jordon had a GJ placed and he will start to be fed to the intestines this evening at 10ml per hour. He was moved out of intensive care into a general pediatric unit. The room is smaller, but at least we have a room to our selves – when Jordon wants to sleep he won’t be interrupted by a roommate or the roommate’s guests.


The surgeon talked to me today and let me know that since Jordon had a (mild) fever last night and since there such a small amount of fluid removed from the chest, Jordon will have an Upper GI study. The surgeon wants to look to see if the esophagus is draining and if so, where it is draining to. He thinks that it may be draining into the chest rather than into the tube he placed on Friday. If he is right, he may need to sedate Jordon long enough to place a trap to drain the chest.




Sunday, October 05, 2008


Jordon did not do so well today - he has been in a lot of pain. He still continues to need one liter of oxygen through the nasal cannula, however he can go a couple of hours without it as long as he doesn’t need too much Morphine.


Since he has had little to no drainage from his esophagus, Jordon will have an Upper GI tomorrow (Monday) morning if the surgeon approves. During this time, the radiologist will replace the mic-key button with a GJ button. The new button will have a port that allows nutrition to be administered to the stomach as well as a port to administer nutrition directly to the intestines. Still, Jordon will not receive any nutrition orally or to the stomach because at this time the surgeon would like the stomach and the esophagus to have a break to insure proper healing.


Once a GJ is in place, Jordon will be able to receive more than just Morphine for the pain. Morphine is administered through IV, but there is not another drug that he can have that way other than Toradol. He was on Toradol, but you are only allowed to be on this particular drug for no more than 48 hours.


Saturday, October 04, 2008


Jordon went into the hospital on Wednesday, October 1, 2008 to have surgery to repair a herniated Nissan.  The surgeon said the surgery went well and he expected Jordon to make a quick recovery. A patch had been placed around the wrap to insure that the wrap will hold and to prevent the stomach from becoming herniated again, and there is an extremely high risk of whatever leaks from the esophagus soaking the patch and causing infection. Almost immediately Jordon came down with a high fever and had difficulty breathing. Jordon was watched closely by his nurses and given Tylenol to reduce his fever, but it just would not go away.  Jordon’s surgeon ordered an Upper GI to check for holes in Jordon’s stomach. The study showed that there was a small hole in Jordon’s esophagus. Usually this is treated with a round of antibiotics and watched closely for about a week, but because of the patch and the risk of infection, his surgeon decided on another surgery.


So for the second time in a week, Jordon was taken to surgery on Friday, October 4. In surgery, the patch was removed and the hole was sewn. Since the hole was not straight in / straight out, there was a small tube paced next to the esophagus to collect any drainage there may be. The tube then leads out of the chest area to a small collection bag on the outside of Jordon’s body. This tube may need to be in place for as long as two to three weeks.


In the meantime, Jordon will not receive any food for a least a week, to insure that the esophagus is completely healed.  Next week Friday, Jordon will have another Upper GI to see if the hole was healed; if it is, Jordon can have a drip feed to his intestines. If not, he will continue to be on TPN to provide nourishment, and will have another Upper GI the following week. Once the esophagus is completely healed, the tube will be removed, but Jordon will continue to be fed to the intestines for about four more weeks.


Jordon is in the Pediatric Intensive Care Unit at Butterworth Hospital. He will remain there until the surgeon is comfortable moving him to a regular pediatric floor. He is kept comfortable with Morphine and Tylenol. He is also on one liter of oxygen administered through a Nasal Cannula, which will be weaned as tolerated by Jordon.



Thursday, May 8, 2008  16 pounds + 11 ounces



I am delighted to tell the world that my little fighter boy is now 13 months old!! During the last couple of months I have found myself pondering on the journey Jordon has taken. He started out as a 2 pound 4 ounce baby fighting for life, with various wires attached to his little body running to monitors and machines. I remember how frightening it was to see him for the first time before the transport team whisked him away, his body no bigger than my hand. Then I had to wait three days to see him again while I recovered in a hospital 50 miles away. I also think about the first time I got to hold Jordon, something like 11 days after he was born and how nervous and happy I was at the same time. Then there was the stress of being so far away from my family and friends during the toughest time of my life, and the relief that came with Jordon’s transfer from Bronson Hospital in Kalamazoo to Spectrum Butterworth in Grand Rapids which was just 10 minutes away from my house.


I could go on and on about the struggles that Jordon went through. All the uncertainties, trial and error treatments, and even 3 surgeries. With the help of family and friends and the prayers and support we received we made it through everything. Thank you, from the bottom of my heart.


Despite the numerous doctor appointments we have to go to, Jordon is a happy, delightful baby. He is very outgoing and loves to be around other people. I took him to get his first haircut last Friday and all he did was flirt with the ladies. He does the same thing in the grocery store when the ladies stop to check him out – it is so cute.


Today Jordon had an appointment at the Neurodevelopment Clinic; I was pleased to learn that for the first time Jordon’s weight, height and head circumference made it on the growth charts.  A Growth Chart is a tool that health professionals use to see if the growth of a child is adequate. At the last neurodevelopment appointment, Jordon’s doctor put him on a drip feed throughout the night to help him gain weight faster. Today she told me that if Jordon continues to gain weight at the rate he has been that we will be able to take him off the pump at night.


Jordon still continues to receive chemotherapy for the hemangioma behind his right eye and on his lip. A MRI in November showed that they were stable so the hematologist decided to alter his treatment. Currently Jordon is receiving Vincristine and a steroid called Prednisolone. He will get one more Vincristine treatment, and then he will just be on the Prednisolone. Hopefully that means the broviac can come out soon.


On the last note, I find myself looking at Jordon and laughing inside at the progress he has made. He is not walking yet but he is starting to pull himself up at the furniture and taking a couple of steps while he holds on. To get around he crawls very fast and even follows me around the house as I pick up and make dinner and stuff like that. Everything he does warms my heart, especially when he says “mama.” I love being his mama!!!



January 21, 2007  13 pounds + 6 ounces, almost ten months old.


Jordon’s hemangioma is not getting any smaller - if anything it’s getting bigger. I expressed this concern to the Oncologist and she decided to skip the chemo for this week. We will go back in two weeks to see his primary Oncologists and determine if we will stop the chemo all together. If this happens Jordon will go in to the clinic once a month to have the hemangioma measured and we will decide what to do from there.


Jordon went to the Neurodevelopment Clinic today.  This is where they monitor his growth and developmental weight. It consists of a number of visits. 


First, Jordon had his weight checked.  Then the dietitian came and asked a series of questions. She decided to switch Jordon from the Pregestimil to Enfacare, which is formulated to provide more calories, protein, vitamins, and most minerals than a regular formula. Usually Enfacare is given to preemies or babies born at a low birth weight. Jordon will also be fed through the night with a feeding pump to insure that he is getting the maximum of calories. Hopefully this will get him to sleep through the night instead of getting up two to three times to be fed.  I can start to give Jordon baby food as soon as the transition to Enfacare is complete – it will take a week. 


Next, a team of Occupational and Physical Therapists made a visit. They played with Jordon and made sure he is where he needs to be physically. Jordon is starting to crawl but he is still unable to sit unattended - they want me to work with him on his sitting. 

Following the OT and PT was a social worker, she made sure that Jordon and I had all the services in place that we need.


November 9, 2007 – 11 Pounds




I’m sorry that it has been so long since the last journal entry – Jordon has been doing very well, but I have been overwhelmingly bored and busy all at once, which makes me feel very tired. 


Jordon continues to get chemotherapy for his hemangioma but it keeps getting bigger. The oncologist decided to increase the amount of Vinchristine and Jordon is getting it every week rather than every other week.  If the hemangioma does not get smaller within the next three weeks than the oncologist will order another kind of chemo on top of the Vinchristine, but I can’t remember what it is called.


Jordon had an MRI of his brain and eyes last week to check to see if there are any more hidden hemangiomas – the results are not in yet.


All around, Jordon is a happy baby.  He is learning how to vocalize more than just a coo, with a hum here and there. He weighs a little over 11 pounds.




October 2, 2007 – PHOTOS

Grandpa Lotterman tried to pick the cutest photos, but they were ALL cute, so they’re all here!


September 25, 2007  9 pounds + 9 ounces


I took Jordon to the progress clinic on Monday and the doctor was not happy with Jordon’s small weight gain since the last time he was there. She decided to increase the calories in his formula to a concentration of 24 from 22. This should help Jordon gain weight faster.


Jordon continues to have the chemotherapy once a week for the next two weeks. Next, the oncologists ordered that Jordon receive chemotherapy every two weeks for the next two months and if the hemangioma appears to be consistently shrinking, then Jordon will receive chemotherapy every three weeks until the hemangioma is small enough for laser surgery.


As you check the website, don’t be discouraged to see no news, be encouraged as in this case, no news is good news!   Jordon is doing very well! 



Thursday, September 6, 2007 – 8 pounds + 8 ounces


There is not much to report this evening other than the fact that Jordon is doing great. He is a little fussy here and there but that’s nothing more than any other mother would have to deal with. Jordon now weighs 9 pounds 8 ounces and feels every bit of it. I would not be surprised if he weighs more than that tomorrow when the visiting nurse comes.


It was a big day for Jordon yesterday. The occupational therapist was impressed with how well Jordon did with his bottle and increased his feedings to 45ml by mouth and 60ml through the GT tube. Next, Jordon went to the oncology clinic for his chemotherapy, which did not take nearly as long as the week before. His counts still look good so I can take him to church on Sunday.


Sunday, September 2, 2007 – 9 pounds + 5 ounces


I took Jordon to church this morning. He was a little fussy so I took him into the nursery and a good long time friend, Karla watched Jordon so I could stay in the service.


Today Jordon weighs 9 pounds and 5 ounces.  He is taking 30ml from a bottle and 60ml through his G-tube.


Jordon will get chemotherapy for approximately 6 months – once a week for 6 weeks and then once every 3 weeks for the remainder of the time it takes to dissipate the hemangioma. Then, hopefully we can take out the broviac – it’s become a hassle to have to care for it every day. I thought today that it was clotted when I tried to flush it, but all I had to do was give the syringe a little more force.


I would like to try to stay here in my apartment rather than going to my mother and step dad’s house. All I have to do is come up with the rent for the last couple of months. The church is going to have a benefit or something to help raise the money to keep me in this apartment. I called the social security administration and let them know that Tim left a month ago and is no longer in the home to support me and Jordon. Therefore, since I do not have an income, I should be able to get the full amount of pay for Jordon’s SSI. It does, however, take 30 – 45 days to process the application and get the first check. I was told by the SSA that payments will be started for the month of August – we are looking at the middle of October to get our first check. Things will be tight around here with money, but if I put my trust in God, surely everything will work out one way or another.


I miss Tim and find myself looking in his carport and all I see is an empty spot. Sometimes I even find myself looking at the clock to see how much more time I have until he will be home from work and often times listen for his car to pull into his spot and wait for his key to unlock the door. But every time I have to remind myself that he is not coming back. Think about how painful it is to know that the love of your life walked out and has absolutely no explanation for it all.  I still have no closure and often wonder what I did wrong to make him up and leave. Do I want him to come back? Well of course I do – but the main question I find me asking myself is can I trust him? Do I want a divorce? Well no I don’t, but if he is not going to come back then what am I waiting for? I need to move on with my life and now is not the time to feel sorry – I have a kid to take care of – all by myself.


Please keep the guestbook entries coming – I really appreciate reading the positive messages and it makes my day to know that you are thinking of us. Thank you again for all of your support throughout this ordeal.



Friday, August 31, 2007


Jordon had an eye appointment yesterday – everything at this point is OK, but he may be a bit farsighted. Jordon feels better and is starting to smile more and he is a lot more energetic.  Today Jordon had an oncology appointment where he got his chemotherapy for the hemangioma. It took almost three hours – first they had to draw his blood to make sure he is healthy. Then it took about 45 minutes to get the Vincristine from the pharmacy. But we were home on time to avoid rush hour traffic.


Things are going a bit better today for Jordon and me. Tim still is not home but it gets easier every day. He does, however, take Jordon overnight once a week.





Saturday, August 25, 2007 - 9 pounds - Five Months old


Jordon came home from the hospital yesterday and he’s a totally different child – he is happy now! Unlike before when he needed me in the room at all times, I was able to do a little straightening up while he sat very content in his swing.


He’s now taking 10ml of formula thickened with cereal from a bottle every three hours followed by 80ml into his feeding tube.  He’s getting the 80ml in just 5 minutes. That’s a total of three ounces every three hours.  After his five o’clock feeding last night, he calmly fell asleep on the floor never looking more comfortable.  Our goal now is to get him to take more from the bottle. 


Jordon lost a little bit of weight while he was in the hospital – he now weighs 9 pounds even, but he should be gaining weight at a more rapid rate now that he is at full feedings and tolerating them.


We decided to re-start the chemotherapy on Friday the 31st. 


I talked to my mother this morning. We’re planning on fixing up the basement as an “in-law apartment.” There is already one finished bedroom, but we want to close off one end of the basement.  We could use some help with building and materials. We need to rough it in and hang and finish the drywall and doors.  We would also like to install a vanity and stand-up type shower - there’s plumbing in place for it already.  If you would like to volunteer help out, please send me an email.


Thank you again to all of you!  You have been so supportive throughout this whole experience. Thank you is really all I can say - words can’t explain how grateful I am.


Monday, August 20, 2007


Jordon had his surgery today – it went well. The surgeon said that there was scar tissue connecting the liver to the stomach which was causing the crease inside the stomach. He removed the tissue and re-did the Nissan to insure that Jordon does not reflux anymore. He plans on ordering a Contrast Study (Upper GI) to make sure there are not any holes in the stomach from the surgery. If all is well, we may be able to give Jordon a bottle as soon as tomorrow. The surgeon was able to keep the mic-key button in the same spot!! Jordon will be hospitalized for approximately two to four nights.


It has been a while since I have been able to be real personal in my entries. Today I am going to tell you what has been happening over the last month.


Tim and I have not been the same since JoJo came so early.  It really got the best of us. As a result, Tim left me about a month ago on a trial separation. He has since decided that he does not want to be with me anymore and plans on filing for divorce.


I plan on moving to my mother and step dad’s house and going to school so I can support Jordon and myself. My mom said she will watch Jordon while I am in class and I hope to return to work as soon as Jordon is able to be placed in daycare.


August 14, 2007 - 9 pounds + 8 ounces


The doctor appointments yesterday went well. We started with a “Well Child” where Jordon got his four month immunizations at his pediatrician’s office.  Next we went to a developmental appointment where we met with a medical social worker and another doctor.  The social worker is getting me hooked up with the resources that I need, like “Early On,” and another social worker to come into the home to make sure we have everything we need. 


The last appointment for the day was with Jordon’s surgeon in anticipation of the surgery scheduled for August 20.  He showed us the pictures from the scope study and they show that something is squeezing the stomach from the outside about half-way down.  The surgeon said that he will use the same incision site from his last surgery but may need to make it a little longer. Once he is in the abdomen region, he will investigate to see if the Nissan has slipped down to the lower part of the stomach or if there is something pushing in from the outside in causing the discomfort and reflux Jordon has been dealing with for the last few weeks. Once he knows what the problem is he will do what he needs to for making Jordon feel better. Since he has to move the stomach around, the GT button will have to be removed and replaced.  He will do his best to use the same site for the button, but may need to make a new site if the stomach is positioned differently after the surgery. 


The surgeon also said we will wait at least 3 weeks after the surgery to start the chemo-therapy up again for the hemangioma.  The good news is that because Jordon is NOT getting chemo, I can take him out into public, including church!   


The surgery is still scheduled for the 20th of this month; please keep Jordon and the medical care team in your prayers for the next week. Thank You for all of your continuing support!!!


August 12, 2007 – 9 lb 5 oz


I took Jordon to ER again today.  He was running a high temp and has diarrhea.  Last night I checked his temp and it was a little over 99.  This morning it went up to 100.9, so I took him in.   I got to the ER at about 1:20 PM.  My dad met me there a few minutes later and Tim came soon after that.


In ER they gave him Tylenol and his temp went down almost immediately.  They also gave him an IV of fluids because he was showing signs of dehydration.   They took some blood and urine to check for infection. 


While we waited two hours for the test results, Jordon perked up and was very content.  He laid on his back for about an hour wide awake just looking around very quietly.  After a while he got bored, though, and his daddy picked him up and rocked him back to quiet.  The tests showed a teeny bit of infection in his urine but nothing wrong in his blood.   The doctor thinks the temp and diarrhea was a result of a stomach virus and the infection is probably a mild bladder infection. 


After another hour of waiting for the ER doctors to contact the primary pediatrician, the ER doctor came in and said they finally contacted her and they were going to give Jordon a dose of Rocephin to treat the bladder infection and let him go home, since the primary doctor is going to see Jordon tomorrow anyhow.  That was about 5:25.  At 6:15 the nurse came in to give him the medicine.  It took about 35 minutes to inject it all and after putting his apnea monitor back on and packing up we got to leave at about 7.  


Jordon hasn’t had chemotherapy since early July.  The doctor thought the chemo was interfering with his healing, so they stopped it.  It’s hard for me to tell if the hemangioma  is growing because it grows so gradually, but my dad says it’s bigger.  We’re not worrying about it right now – hopefully in about 6 months, we’ll be able to decide what to do about it. 


August 9, 2007


Jordon is scheduled for exploratory surgery on August 20.  Hopefully the doctors will be able to determine what caused the fold in his stomach and what to do about it.  We have a bunch of doctor appointments on Monday.  We’ll let you know what we find out.


Friday, August 3, 2007 -  9 pounds


Jordon will be hospitalized just overnight tonight after having a light sedation for a scope study to see what is going on inside his stomach.  The study showed that there is a fold in the lower stomach. The only way to know how it was created and how to solve the problem is exploratory surgery.  I am not quite sure at this point if we will do surgery now or wait – I should get a call from the surgeon on Monday morning. 


We had a consultation with the surgeon and the GI doctor on Friday to discuss where to go from here. The surgeon said on Friday that he wants to wait until Jordon is bigger and stronger for another operation.  For now, he may place a tube into Jordon’s intestines for feedings to insure that he is getting the proper nutrition.


Saturday, July 28, 2007  8 pounds + 5 ounces


Yes, another day in the emergency room.  This time it was not for a life threatening condition but for a leakage in Jordon’s GT Tube. The tube has a little basket or cage at the end which holds the tube in the stomach, but the basket was beginning to protrude its way out of the body. The GI’s assistant came down to take a look at the site and decided that it was time to place a mic-key button in the site, instead of another GT Tube. 


Since the button is intact, Jordon is getting the amount of formula as prescribed, but he is not tolerating it.  I was told to decrease the amount of formula if this was to happen, but even with the decreased amount, Jordon is still not able to tolerate. So I called Jordon’s GI and he instructed me to decrease the amount of formula to 20 ml per hour on a continuous drip. He will be talking to the surgeons on Monday and I will find out just what will happen next.  For now, Tim and I have an ornery, hungry baby on our hands.



Friday July 27, 2007


I was able to bring Jordon back home today. The doctor said that he is stabilized and there is no sense in him staying in the hospital.  He’ll probably need another surgery but we’re not sure what kind or when.  Jordon is on a continuous feeding drip to the stomach.  He seems pretty hungry.  He still can not have a bottle because he doesn’t swallow correctly.   He’s also on an apnea monitor which has an alarm if Jordon stops breathing.  It was kind of hard to get him to go to bed, but right now he’s sleeping peacefully. 



Thursday, July 26, 2007


Today is my sister, Angela’s 25th Birthday – we met for ice cream at the Mc Donald’s near the hospital, but I was so exhausted that I went home for a nice two hour nap.


Today was a busy day, I met with a series of doctors with title that I could not remember to tell – I should have taken better notes! The upper GI study showed that there may be a slight tightening near the bottom of the stomach and the Nissen may have loosened enough to cause the reflux that Jordon has been having the last couple of days.  Between the upper GI study and the swallow study, which shows that Jordon is not swallowing correctly, Jordon will not be receiving a bottle until the problem with the reflux is resolved.


To help get Jordon home, the doctors MIGHT place a tube through the GT tube into the intestines and put Jordon on a continuous drip – to give his belly a rest.  This is something that I can care for at home and I will be tough before discharge.


My mom stayed with me this week – I don’t know what I would have done without her. Since Timmy was at work providing for his family, mom was there at the emergency room taking turns with me watching the baby so we could take breaks for sleep or what ever else we needed.  She also did all of our laundry and cleaned our apartment very nicely – Tim got home from work and didn’t know what to do!!



Wednesday, July 25, 2007


8 pounds + 4 ounces


This may be a little hard for me to write tonight. Unfortunately, Jordon is back in the hospital – this time for reflux.


It all started Monday night/Tuesday morning at 3 am, when Jordon had a reflux episode.  This time it was different than at the hospital where the nurse would suction Jordon out to help him breathe.  He had a hard time and all I could do was lightly rub his back to stimulate him to remind him that there is not a machine at home to do the breathing for him.


After the episode, Jordon was not himself, he was not letting me calm him down and continued to arch his back, so I immediately called the NICU charge nurse and she instructed me to take Jordon into the ER to have an x-ray taken of his lungs to make sure everything was alright.  After a four hour stay, the doctor determined that Jordon has aspiration pneumonia and we were sent home at 9 AM Tuesday with an antibiotic.


Jordon seemed to feel better on Tuesday until later that night when he began to vomit – 4 times within 6 minutes.  So back to the ER we went.  The question this time is why is Jordon refluxing after the Nissen surgery?  So he was admitted to the Pediatric Unit for testing.  The first test was an upper GI.  The results should be in sometime tomorrow (Thursday).


I was going to stay at the hospital and take care of the baby but my Dad and Amanda came to visit and with a little insistence from them and Jordon’s nurse, I decided to come home and sleep in a bed that is comfortable and welcoming to me.  The nurse reassured me that Jordon is in good hands and that everything will be OK!!


Wednesday, July 25, 2007


(Entry by Ken Lotterman)  As more details become available, I will pass them along to you.  I spoke with Kendra at about 9:30 AM and she reported that Jordon was admitted to Pediatric Intensive Care last night.  She said that in the evening on Tuesday he just kept spitting up, so they brought him in.  She said they are going to do a GI study on him.


Kendra was on her way home to get some much needed sleep and I did not press her for details because she was extremely tired and emotional. 


Keep an eye on this web page for details or subscribe to updates by sending an email to with the subject “Jordon Updates”



Sunday July 22, 2007.  JORDON’S HOME!!!



We brought Jordon home this morning.  The discharge went flawlessly.  He’s in his swing at home right now and seems very comfortable.  He really likes his swing! Grandpa Lotterman got to give him a bottle (grandpa’s first).  My mom and step-dad and my dad came to the NICU for what’s probably their last time.  We took lots of pictures of the big event.  I got home and set up the IV pole and the “Joey” while Tim and Ray grilled some burgers and my dad typed this.  Josh and Chrystal stopped in for a minute, too.  After lunch, Tim’s dad and Holly came over for a real quick visit.


Friday night’s sleepover went real well, except we accidentally set the pump to give him too much formula.  I woke up and figured it out and informed the nurse.  It was OK, though – the doctor just said to give him less at the next feeding.  For his next feeding, the tubing had come loose and the formula went into the bed instead, so I guess we really did give him less!  I slept like an angel, but Tim didn’t sleep very well at all.   



Thursday, July 19, 2007  -  Jordon is finally 8 pounds!!!!

16 weeks + 4 days



He had a hard time getting anything out of the new nipple that I tried yesterday.  The Occupational Therapist and the nurses and I put our heads together and decided the nipples were too small for Jordon so we switched to a larger size.  The OT said that Jordon is not a preemie any more and he’s older than a newborn so he needs a nipple that has a larger opening than the “first stage.”   When I gave Jordon his two o’clock bottle he took 20 ml, but he played at his five o’clock feeding and sucked but took nothing - sometimes babies who are just learning how to eat do that.


I ended up having the root canal this morning on my left front tooth.  The worst of the pain was from the insertion of the needle in the gums. (A numbing agent was added first)  I went through the entire day without a problem other than swelling.  When I had lunch with Linda I had to eat with the right side of my mouth.


My dad came to visit tonight and then Amanda came a few minutes later.  It was close to Jordon’s bedtime and we all left the hospital around 9 pm.



Wednesday, July 18, 2007


I went to the dentist this morning and found out I may have to have a root canal on my left front tooth.  I have to return to the dentist on Thursday for more "tests" to see if it is necessary.  I went to the hospital at 9:30 on the way home but Jordon would rather sleep so I let him be and was only there for about 20 minutes.  But that's OK - babies sleep!


Sally Smith from church came over to the apartment and helped clean up - we vacuumed and scrubbed the shower and the floors and made it look real nice. 


I went to Vasaio Life Spa and saw Christina for a massage, compliments of Tim's brother Doug (happy birthday to me). She did a great job - if you ever need a massage, I recommend very highly that you go see Christina.  She has a background in nursing and sports medicine and she knows the human body very well.  It's amazing how my body responded to her technique!  Then I saw TJ (compliments of Vickie and Victor, the owners – I love those people, and they love me!) and she waxed and trimmed my eyebrows. Now I look and feel great!  Now I just need to stretch and maintain the relaxed feeling I have right now.


I got to the hospital around 7:15 this evening.  Jordon did a lot of nippling, but he didn't actually swallow anything - I think maybe there was a clog in the nipple or the formula wasn't mixed well.   Chrystal came to see Jordon but he fell asleep before we could do any of his care, so we tucked him in and left for the evening.  


Monday July 17, 2007

7 pounds + 12 ounces


We just found out today that we will be bringing Jordon home on Sunday, July 22!  We are very excited – right now we are going through the process of discharge instructions.  I met with the surgeon assistant to learn how to take care of his GT tube.  I also met with Paul from a rental company for the pump and he will be meeting with me every day – he’s going to teach me how to operate a feeding pump in case we need to take that route.  Tomorrow I will learn how to dress the broviac insertion site using a dummy doll and I will also be getting the supplies I need for the broviac and GT care.  I found out that I can use whatever bottle I want to and I can bring in the bottle tomorrow to see if Jordon likes it.


Tim and I will be doing a rooming-in on Friday night.  We “check in” around 8 pm – we’ll get up with JoJo every three hours to feed him and do his care – we won’t have to take his temp every three hours because we won’t be doing that at home.   We’ll have to bring an alarm clock and some food and a cooler for beverages so we can function as if we are home.  We have to bring in our breakfast and everything – this will be like a dress rehearsal.  I’m sure it will be a rough night, but we’ll figure it all out and it will be good practice for us so we won’t get hit with a big reality check.


Saturday we’ll take the night off and get some good sleep.


We’re *very* excited to be bringing Jordon home!  Thank you once again for all your prayers and support – keep them coming though, because it’s not over yet!   We’ll be having follow up appointments for a long while – a discharge nurse from the hospital will be making those follow up appointments for us.  I know of at least four right now - one is with an Occupational Therapist who will be checking up on Jordon’s progress on how he’s feeding and accepting a bottle and stuff like that.  We may possibly meet with a surgeon to see when he’ll get the button put back in that was taken out during the surgery – we’re expecting that to happen in about six weeks. 


Saturday, July 14, 2007 - 15 weeks + 6 days


This has been an extraordinary day for Jordon.  He started the day taking just a 5ml bottle and the nurse talked the doctor into letting Jordon take as much from a bottle as desired. At 2pm Jordon took 12ml and then at 5:30pm Jordon took a whopping 20ml from the bottle!


I talked to the hematologist today and she informed me that Jordon does not need to be hospitalized to receive his chemotherapy and with the progress he is making this week he should be able to go home as early as next week – it’s hard for me to not get my hopes up.


My dad had Timmy and me and Josh and Chrystal and Angela over for my birthday.  He served us a brisket that he had in his smoker for nine hours and it was phenomenal.  He also grilled sweet corn and made guacamole.  Tyler and Gary were both there too – Tyler is walking now and his grandpa was very proud. 


After dinner, Angela and Chrystal came up to the hospital to see JoJo.  Jordon took 23 ml of milk from his bottle. 


I had a very good day.


PHOTOS FROM 7-12 and 7-14


Thursday July 12, 2007

15 weeks + 4 days, 7 pounds + 10 ounces


Thursday 8:15 AM – Jordon took his FIRST bottle this morning!  VIDEO  He took 5 ml with no problems at all!  This is a very significant achievement for him – it’s the biggest step he has taken so far toward going home.  It was truly a thrill to see it!  The look of contentedness on his face was priceless.  He’s been on a pacifier almost since he was born, so the sucking was natural for him, but this was his first real taste of milk or anything other than sugar water.   We were afraid he would have a problem with the suck/swallow/breath reflex, but that didn’t seem to be a problem until the very end, when he kind of gagged on the nipple.


An Occupational Therapist had to give him the first bottle to make sure everything went well.  At first I was a little disappointed that I couldn’t give him his first mouth feeding, but then I realized I would be too nervous anyhow.  I’ll get to feed him at about 11AM.  He’s “ordered” to have 5 ml two or three times a day fed to him by his mom or dad. 


Grandpa Lotterman video recorded it.  The video is posted here!  It’s about seven minutes long and works best if Windows Media Player is configured to play wmv files.  If not, you may have to right-click the link and choose “Save Target As...” and save it to your desktop, then minimize Internet Explorer and play the file from your desktop.  If all else fails, let me know and I’ll have my dad post it a different way.


Last night he weighed seven pounds and ten ounces – fat boy!


The last few nights I have slept really well – I feel energized and am definitely starting to feel like myself again.   Even though my appetite is back to normal, I’m starting to lose weight (which is a plus) and when Jordon comes home, we’re going to have one big party!!!  You’re all invited and I look forward to seeing everybody. 


I’ll be a little behind yet on thank-you cards for the gifts from my baby shower.  I’ll do the best I can, but in case I can’t get to it, Tim and Jordon and I would like to take this opportunity to say Thank You!


July 11, 2007 (Entry by Ken Lotterman)


Tomorrow (Thursday) is Kendra’s birthday.  One unexpected gift is that she gets to try giving Jordon a bottle!!!  I will be picking her up at 7AM to bring her to the hospital and we’ll be crossing our fingers that Jordon takes it!  I or Kendra will let you know how it goes.


July 10, 2007


I came home today after spending almost five days at Pine Rest getting help recovering from post-partum depression.  I learned a lot from the program and will continue to do some research on how to take care of a family while suffering from Bipolar Disorder.  Thank you for being patient with me while I was out on my retreat (or as I would like to say my “vacation”) from reality as I worked on my mental stability.   I am now more able to be mentally and physically available to my husband and my infant son.


Speaking of my infant son – Jordon was so happy to see me today.  It was so different for him to be lying in my arms rather than hearing my voice over the phone once a day or so when he was fussy and I was talking on the phone to his nurse. I gave him a bath and took care of his GT dressing but I quickly got really tired.  I had to leave after a SHORT visit of only two hours – I am still getting used to the medications that I have to take to be a good wife and mom.


Thanks again for being so supportive – I could not do it without you!!!


July 6, 2007 (Entry by Ken Lotterman)


Jordon is improving and resting comfortably.


Kendra has been having trouble dealing with the enormous amount of stress she has been put through over the last three months.  She is currently on a retreat learning to deal with that stress and getting help with recovering both emotionally and physically. 


I spoke with her this evening and she is very comfortable.  She’s also convinced that her decision to take the next three or four days off is the right one.  In fact, she feels like she has made a lot of progress already - just in one day.   


July 4, 2007 - PHOTOS


Tuesday, July 3, 2007  6 pounds + 15.8 ounces

14 weeks + 2 days = 3 months + 9 days


Life seems to have been a living hell the last couple of weeks and am I quite on edge.  I’m sorry that I have not been taking the time to update this journal. By the time I get home from the hospital, the only thing I want to do is escape from reality and take some time for me.  I have a doctor’s appointment this afternoon, so I am staying home in my pajamas, lying on the couch until I absolutely have to get up and get ready.  Please forgive me for not keeping in touch with you, but it is very difficult at this point.  Hopefully things will get real better real soon.


Jordon’s primary nurse has been gone on vacation for the last 13 days and is finally back.  Jordon is happy to see her but is persistent to let her know that she wasn’t there for him and he was telling her all about it.  She is really busy today, but if she gets the time, she said she will give Jordon the lovin’ that he missed for so long from her.  It is really hard for the nurses not to get attached.  It’s just as hard for me not to get attached to the nurses.  Knowing there is no one in the world like mommy, it’s alright with me that Jordon loves her the way he does.


Jordon did not want much to do with anyone other than me last night.  He was not having it when daddy was holding him, and later when his Grandpa Lotterman came to visit it took a while for him to be happy.  I had to pick him up once and calm him down and then encouraged my dad to hold Jordon one more time.  Jordon’s Uncle Josh came to visit as well – Jordon was happy to sleep in his arms but soon rebelled and wanted his mommy.


Jordon is feeling a lot better; he is almost a different baby.  He is now breathing on his own again and is off all pain medications – Tylenol can be given as needed, but he has not needed it yet today!  Feedings were resumed after an Upper GI Study was completed and showed no holes in the stomach or intestines.  He was started at 5 ml of formula per hour on a continuous drip to the STOMACH and tolerated it so well that the amount was increased this morning to 7 ml!!!


I will return to the hospital after my doctor’s appointment and spend the remainder of the evening there with Chrystal.  I will do my best to update everyone on a more regular basis.  Thank you for your understanding and support.


(Ken Lotterman writes) Monday, July 2, 2007


Saturday Jordon was comfortable, but seemed to be in a little pain.  Kendra thinks he is starting to feel better.  He is back on a nasal cannula for breathing.  He’s getting more alert and active.  I got to say hi to him just before Kendra and I had to leave for a lunch appointment.


Kendra is making plans for Jordon’s baptism – it will have to be at the hospital and there will be limited space for witnesses, so if you are not invited, please be understanding. 


Kendra and Tim were excited to be able to spend some time with Gary this weekend – they met Josh and Tyler at Playworld. 



I asked Kendra for some details about the surgery and here’s what I came away with:  The “Nissen” wraps part of the stomach around the esophagus to constrict the opening, allowing food and drink to pass into the stomach, but stops stomach acid (and vomit) from escaping the stomach through the esophagus.  This is to reduce or eliminate the damaging and painful reflux.  The doctor originally didn’t want to do the surgery until it was necessary.  A team of 12 doctors including the surgeon decided that it was best for him and to do it asap to relieve the reflux.  He’s not spitting up anymore and Kendra can tell he’s more comfortable. 


In addition, because Jordon is not ready yet to eat through his mouth, they inserted a semi-permanent feeding tube directly into his stomach. To insert the button (GT Tube) they had to make kind of a handle to pull up on the stomach with suture thread sewn into each side of the stomach.  One of the four sutures came loose leaving a small hole which allowed some of the CO2 that they used to hold the belly open during the procedure to leak into the abdominal cavity.  That air showed up on the x-ray and alerted the doctors to a problem.  On Friday they opened him up to look for that hole and fixed it.


The hole in the stomach was a complication – there’s always a risk when they do this kind of surgery, but the problem is so rare they didn’t even warn Kendra and Tim about it.   


Tim and Kendra have been attending Wyoming Park United Methodist Church for some time now and that church has stepped right up in this time of need.  Pastor Bill and Parish Nurse Wendy have been there for them for the entire duration of both surgeries and have been to visit on many, many occasions.  The church has even started a “Masters Family Ministry” in which church members can sign up for visiting and other supportive activities.  This is truly a blessing to Tim and Kendra.  There are plans in the making for a benefit dinner, and some members are gifting Tim and Kendra with gas cards and checks.  Around 1987, I was looking for a new church home and walked into WPUMC and immediately felt at home.  I had since transferred membership to another church, but Wyoming Park is where my United Methodist roots are and where three of four of my children, including Kendra, were raised.  It warms my heart to see Kendra has returned there, and when I “visit” that church I can still feel at home.  Thanks to everyone there for all you have done!


(Ken Lotterman writes) Thursday morning, June 28, 2007


Jordon had another surgery today – One of the internal sutures came loose which left a small hole in his stomach.  The first surgery was done with a scope, but today they had to make an incision.  He did fine with the surgery and came out around 10:30 AM.   I’ll post more when I can.


Tuesday, June 26, 2007 – Three calendar months plus one day


Jordon went through the surgery with flying colors.  He was wheeled to surgery about 2:20 and was taken into the OR around 3:05.  I held myself together well.   I and the family went for ice cream and sat in the waiting room.  The surgeon walked into the waiting room about 5:35 with a big smile on his face - Jordon did well with the operation.  They had first inserted the broviac into Jordon’s neck, down to his chest, followed by the Nissen.  For the Nissen the doctors wrapped the stomach around the esophagus and inserted the GT Tube into his abdomen.  Lastly, the surgeon performed a circumcision.


After the surgery Jordon and I were both exhausted.  Jordon will be well sedated through the night and Tim and I headed home for an early night. 


Last night Jordon weighed 6 pounds 13 ounces. His weight was not taken tonight so that he can continue to recover.  I will let you know as soon as possible after he is weighed again. 


***Here are a few PHOTOS taken after the FIRST surgery***


Tuesday, June 26, 2007

Update from Ken Lotterman


Kendra has been doing a very good job of keeping herself together considering what she has been going through, but lately the stress of it all has taken it’s toll.  I couldn’t expect her to be able to make journal entries every day, at least for a while.


Although it’s difficult to know exactly what is going on with Jordon’s digestion issues, it is clear that he is very sick.  The doctors had decided NOT to perform the Nissen surgery until further consultation.  On Monday they did an about-face and have scheduled the surgery for today, Tuesday, at around 3 PM.  Kendra and Tim have placed their trust in the doctors and in God that this surgery will be successful.



Thursday, June 21, 2007 – 12 weeks + 4 days – 6 pounds +7 ounces


Since today is my due date, I had an emotional day.  I’m finding it hard not to cry.  It was especially tough when I was asked to leave the room so the GI doctor could do a scope study.  Jordon was given a med to partially sedate him and a scope was sent down through the esophagus and down into his belly.  The pictures showed that there was more acid in his esophagus than there should be and the doctor said that for the amount of time Jordon has been on Prilosec things should look better.  He plans on talking to the surgeon and Jordon’s doctors tomorrow to decide if it in the best interest for Jordon to have the surgery.


Angela and Rhett came to see Jordon this evening.  Angela held Jordon after his bath and he fell right asleep, but he did wake up once and spit up on her – Jordon had to leave his mark!!



Tuesday, June 19, 2007 - 12 weeks + 2 days, 6 pounds + 5 ounces


I got to give Jordon a real bath tonight.   His PICC line was taken out after an X- Ray showed that he had outgrown it.  I got to put pants on him for the first time – he looked so cute!!


Pastor Bill from WPUMC stopped in to see us and he got to hold Jordon.  He was a little scared when the alarm went off because Jordon was having a brady, but I reassured him that it was not his fault and we all calmed down. 


Jordon is feeling well lately.  The doctors all have to get together and decide if there are any more tests to run before they do the surgery.  I think it will be soon though, because since the PICC was taken out there is not a way for Jordon to be given his chemo therapy. He was due for it yesterday but they were unable to get blood drawn back out of the PICC. When Jordon does have surgery, he will also be getting a broviac for the chemo. 





Saturday, June 16, 2007 – 12 weeks - 6 pounds + 8 ounces


OK – so it’s been a while since I wrote an update.  I’ll try to keep on top of the updates but I might have to start doing them every other day instead of every day.  Usually by the time I get home from the hospital I’m feeling pretty emotionally and physically exhausted.  However, I am extremely grateful for the prayers and support we have and continue to receive.


Jordon is feeling better today.  Friday, the doctor ordered the feeding tube be pulled back into the stomach.  Jordon did well for a few hours but last night he began to spit up every five to ten minutes.  He kept this up until I got him settled down and asleep.  He continued to spit up through Saturday morning and began to have feeding related bradies, so the doctor ordered the tube to be moved back into the intestines.  An x-ray was taken to make sure the tube was in place and it showed there was air in the intestinal walls.  As a precaution, a lab test was ordered (which came back negative for infection) and Jordon’s feedings were stopped.  A follow up x-ray will be taken tomorrow morning and if all is well the feedings will be resumed.



Wednesday, June 13, 2007  Eleven weeks + four days, 6 pounds + 6 ½ ounces


We had a conference with Jordon’s primary doctor today.  Jordon is going to need a surgery called Nissen fundoplication.  This is where part of the stomach is wrapped around the esophagus and a tube is placed through the abdomen to the intestines.  The surgery is done primarily to reduce size of the stomach entry to prevent reflux.  It also gives the esophagus a chance to heal.  He will also need a central line put in for the chemo treatments.  This is usually placed near the collar bone and will replace the PICC line.  This will more than likely happen in about two weeks and hopefully he will be home in six weeks.


Jordon is feeling well today.  He continues to tolerate the full feedings but still has some reflux. He took a nap with his daddy for about an hour and he snuggled with his mommy for the rest of the day – he sure is a cuddle bug!


Sunday,  June 10 and Monday, June 11, 2007

Eleven weeks and two days

  6 pounds + 2 ounces


I am emotionally drained and simply did not have the strength to report Jordon’s progress the last couple of days.  But here is what I recall:


Jordon still continues to reflux but handles the pain well.  He is very well mannered for a baby who is going through so much and he rarely fusses.  The plastic surgeon who has been keeping an eye on Jordon’s hemangioma referred a cancer doctor to examine the mark and determine what to do from here.  Since Jordon has been given steroids to treat the hemangioma and it continues to grow, Jordon will be started on chemo tomorrow.  Jordon does not have cancer but the hemangioma is a type of tumor and the chemo will reduce the mark until it is gone.  Treatment could take as long as six months.


Jordon is still fed full feedings through a tube directly to his intestines.  Throughout the next couple of weeks Jordon will be fed to the stomach but it is not a sure thing.  He may not be able to handle food in his belly. 


We meet with the doctor on Wednesday to discuss the care plan for the next month – hopefully he can estimate how much longer Jordon will be hospitalized.



Saturday, June 9, 2007 – Eleven weeks, 6 pounds + 1.4 ounces




I stopped at the hospital this morning before Tim and I went to a couple of graduation open houses and Jordon was not feeling the greatest.  He had refluxed a large amount of fluid, clogging his nose and making it hard for him to catch his breath.  The nurse was right on top of things and had a suction hose ready in a matter of seconds.  As soon as Jordon was able to breath again he let out a wail from the pain he just endured.  I am glad that I was there at that moment to comfort him.  The doctor was there to see it all and immediately wrote an order for a dose of Maalox – Jordon was soon resting peacefully.


Jordon’s Grandpa Lotterman came to visit this evening.  Jordon was feeling much better than earlier and was very alert as Grandpa was holding him. Jordon is currently getting 15ml of milk on a continuous drip to the intestines, one more day and he will be at full feedings.  The amount was increased for full feedings because Jordon weighs more than he did a couple of days ago.



Friday, June 8, 2007 – Ten weeks + 6 days, 6 pounds + 2 ounces


The doctor decided that it was time to get Jordon to full feedings so Jordon’s milk will be increased by 1ml every 12 hours until he gets to 17ml.  Currently Jordon is at 13 ml of milk at a continuous drip to the intestines.  He had a few spit ups today and the PH level in his belly was low so Jordon will be getting Prilosec and Zantac together.  After 4 days the Prilosec should be working and in his system and the Zantac will be stopped.


Jordon is a cuddle bug today – he missed me while I was away.  I took the morning and part of the afternoon off to catch up on the house cleaning and the laundry.  Don’t let me fool you though – I enjoyed staying in my pajamas all day long while sitting on the couch watching the Discovery Health Channel – it didn’t take me that long to clean the apartment ;)



Thursday, June 7, 2007 – Ten weeks + 5 days, 6 pounds


Now that Jordon is not getting the Lipids, he will not be gaining weight as fast.  He has gained in grams but not enough to make an ounce. 


He is feeling well today.  He still has some spit-ups but he is able to handle that.  He was spoiled with the presence of both his father and me tonight. Usually Tim is at the hospital two or three times a week.  He has a phobia of hospitals making it hard for him to be there too long.



Wednesday, June 6, 2007 – Ten week + 4 days,  6 pounds


Jordon is now getting 12ml of milk on a continuous drip to his intestines.  The TPN was stopped and replaced with a starter TPN.  Starter TPN is basically sugar water and calcium.  Now that Jordon is at full feedings, the lipids have been stopped as well.


Jordon is still tolerating the reflux.  The stomach acid refluxes and he tries to swallow it for a few seconds and then he behaves as if nothing happened. 



Tuesday, June 5, 2007 – Ten weeks + 3 days,  6 pounds even!!

Jordon is up to full feedings tonight!!!  In a day or so the feeding tube will be taken from his intestines and placed in his stomach.  Tomorrow he will be getting sugar water in replacement of the TPN (Total Parenteral Nutrition - nourishment provided intravenously) and if Jordon can tolerate the full feedings for a while then the PICC line will be taken out of his heel and not only will I finally be able to put pants on him, but it’s another step closer to going home!! (PICC is an acronym for Percutaneously Inserted Central Catheter. It’s a long, very thin catheter inserted through the skin (percutaneously) into a vein for the long-term administration of fluids and/or medications.  He’s had it almost since day one.)

Jordon is feeling well and appears to be happy even though the replogle tube was taken out of his stomach and therefore he has to handle the reflux.  The replogle tube drains fluids from his stomach while he’s being fed directly to the intestine. 


He really enjoyed the snuggle session we had after I gave him a sponge bath – he gets cold really fast when he’s wet.



Monday, June 4, 2007 – Ten weeks + 2 days, 5 pounds + 13.6 ounces


Jordon was not feeling well when I arrived at the hospital this morning.  I wasn’t sure what was bothering him – his diaper was dry.  But when I told the nurse I didn’t think he felt good she looked in his chart and discovered that he had not had a bowel movement in 48 hours.  She talk to the doctor and was given permission to give Jordon a suppository.  Within minutes he soiled his diaper. 


Jordon’s “Nanna” (Grandma Masters) came to visit but did not stay long because she had to be to work early this evening. 


After Jordon’s 8 o’clock care we had a session of Kangaroo Care.  Once he got settled in he was off to sleep and did not move for the whole hour and a half he was in my arms.  My curfew came so fast (but I have to stick to it) so I tucked Jordon into bed and left for the evening.  Jordon is now feeling well and is comfortable.



Sunday, June 3, 2007 – Ten weeks + 1 day,  5 pounds + 14.6 ounces


I had a splitting headache after church so I relaxed and took a nap. Since I took such a long nap, I did not get to the hospital until 6 PM again today.  Jordon was resting well on his stomach when I arrived at his bedside, but as soon as I said hello to him, his eyes opened right up. 


Jordon’s feedings were increased to 9ml of milk per hour on a continuous drip to his intestines.  He appears to be comfortable and is not fussy at all.  There is not much more to report this evening.  Thank you again for keeping up on Jordon’s progress.



Saturday, June 2, 2007 - Ten weeks, 5 pounds + 13 ounces


I had some much needed pampering today at Vasaio Life Spa.  I am still a little tense but not nearly as tense as I was before the massage.  I would like to go back in a couple of weeks for more relief – but I’m not sure if we can afford it. 


My Mom and Ray came to see Jordon after my cousin Sarah’s graduation open house.  Mom held Jordon for about 25 minutes before Jordon was over-stimulated and I put him back into his crib to let him rest.  Later, my dad stopped by for a while to pick on Jordon.  Jordon tolerated it well but that will be the last time he gets bugged when he is sleeping – DAD!!!!


Jordon is doing well today.  He is tolerating the feedings which are now to 8ml per hour on a continuous drip to his intestines.  He is “rooting” now, where he opens his mouth and turns his head to look for something to suck on – Jordon loves his pacifier.



Friday, June 1, 2007  - 9 weeks + 6 days, 5 pounds + 13 ounces


Angela got to hold Jordon for her first time ever this evening.  She was very calm with him and he looked really cozy in her arms.  Shannon was there too.  I babysat for her all the time before Jordon came so early.  I actually babysat Zane, her son, the day before Jordon was born.  After the visit we went to the hotel where my brother-in-law Rhett (Angela’s husband) works to go swimming.  I spent most of the time in the hot tub and realized how wound up I am.  I have a gift certificate to Vasaio left over from before the wedding - I should go use it.


Jordon is having a good day.  He did have a couple of spells where he needed to be stimulated.  He is getting 7ml of milk per hour on a continuous drip to the intestines.  There is not much of a progress to report, but he is happy and comfortable.



Thursday, May 31, 2007 – 9 weeks + 5 days, 5 pounds + 11 ounces


I took the day off to do “power pumping”, so I did not see Jordon at all today.  The lactation specialist suggested that I sit on the couch and do nothing all day but pump every two hours rather than every three, which is traditional. 


I spent the day at my dad’s where it is nice and cool because of the air conditioning.  Later Josh and Chrystal came over as well as Kim, Chrystal’s mom, along with Tyler.  Tim showed up a few minutes behind as well as Linda – but I’m not sure if it was in that order or not!!  We all got together to have dinner and do a little swimming.  The night was perfect for it.  It never rained and the temperature was just right for swimming. 


It is 11 PM and I’m really wishing I was at Jordon’s bedside, but it is too late for me to go now.  I set a curfew long ago to make sure I do not spend all night there.  Plus, if I went now I would have to go through the emergency security, and that is just a pain in the butt.


Jordon did well today – I wonder if he missed me as much as I missed him.  His feedings were not increased to 10ml and hour as projected but to 6ml an hour just to make sure he can tolerate that amount of feeding and to not stress his bowels.  A volunteer came in and held Jordon a little too – I really appreciate all they do.  I’m glad someone held him today.  His evening nurse told me she was not going to be too busy so she would pick him up and rock him too.  She might even put him in the swing later on if he gets fussy while she is busy with another baby.


Sometimes I struggle with not being with Jordon – not to mention that I miss him every minute I am not there with him. But I know that if I want to be emotionally available to Jordon I need to take care of myself first.  Every minute is harder than the one before when I really start to really miss him like I do now.



Wednesday, May 30, 2007 – 9 weeks + 4 days,  5 pounds + 9.8 ounces


Jordon is feeling obviously better today – he was very alert for me when I first arrived this morning.  The nurse took the tube out of his mouth and he loved it!  I have never seen him suck on his pacifier the way he did all day today. 


Today’s X-ray showed that the air around Jordon’s intestines has dissipated and there appears to NOT to be a hole present.  Since the X-ray came back normal, Jordon’s nurse put the feeding tube through his nose instead of through his mouth and the feedings were resumed at 5ml per hour.  If Jordon does well with that, then the amount will be increased to 10ml (where he left off) tomorrow morning!   The amount of feeding that Jordon can tolerate is a very important measure of his progress, so going *back* to ten will be very good news.


Jordon acted a little hungry before his feedings were resumed.  He was a little fussy but not terribly upset.  A few times he calmed down as soon as I gave him his pacifier.


I’m starting to learn Jordon’s body language.  I gave him a bath and changed the sheets in his bed and as soon as I got him swaddled, he put his hand in front of his face and spread his fingers.  So, I left him be and he drifted off to sleep. 


Today was a great day.  It was awesome to see him so happy and calm!!!


Correction to the May 28 entry:  Jordon got blood because his hemoglobin was low, not his electrolytes.


Tuesday, May 29, 2007 – 9 weeks + 3 days, 5 pounds + 7 ½ ounces


Jordon’s feedings were stopped today.  During a routine X-Ray the radiologist found some air in Jordon’s intestinal walls.  Another series of X-Rays were completed and did not show as much air but still some. A tie breaker will be done tomorrow morning.  The doctor said that if there is still air in the intestinal walls then there may be a hole somewhere in Jordon’s intestines – hopefully this is not the case.  I will let everyone know the outcome in tomorrow’s entry.  NOTE: the entry for May 30 states that there does NOT appear to be a hole in the intestinal walls – ed.


Jordon also is not feeling so well and is very fussy.  He was very clear tonight that he did not want to be held, so I set him down, tucked him in, and left for the evening.


I had to keep myself from crying all day.  It is getting really hard to deal with this and all I want to do is bring my baby home and be a family.  Finally, when I got home I let it all out and cried until it was time for me to go to sleep.  Ginger having her baby early really made me face reality.  Please don’t think I’m saying it’s her fault – it was just the icing on the cake.


Monday, May 28, 2007 – 9 weeks + 2 days


I could feel a difference when I returned to Jordon’s bedside after taking a brief break.  I don’t feel as stressed as before.  Even Tim can tell the difference.  Thank you for being patient with me while I was away getting better.  It is time for me to take better care of myself and I may be getting away more often to catch my sanity.


Jordon is doing well.  He is getting a blood transfusion and we couldn’t get his outfit off so we couldn’t get his weight.   His nurse will get it after the transfusion.  He is getting the blood because his hemoglobin is low and he had a couple of bradys today.


Jordon went in the swing today for the first time.  The nurse said that he was in it for a couple of hours and seemed to like it quite well – I wish I could have gotten a picture but I was not there.  Jordon is up to 10ml of milk and he is doing well digesting it too.  It won’t be long and he will be getting his feedings all at once.


Jordon was not neglected when we were away, my mother was really looking forward to seeing him before we decided to take off, so I prearranged it for her and Ray to see Jordon without us.  Mom got to hold Jordon for about 40 minutes – I’m glad someone did - I hold him all the time and I was not there to do it.


Saturday, May 26, 2007 -  9 weeks, 5 pounds + 8.5 ounces


I had to get away for a while so Tim and I packed our bags and headed up north to his cousin’s house in Kalkaska.  The day-to-day every day at the hospital finally got to me.  We may stay for just one night but we have extra clothes in case we want to stay an additional night.  Since it’s a long weekend it won’t make a difference either way.


Jordon is rather sleepy today.  It may be from the Tylenol that he was given for his 2 month immunizations. 


He got to snuggle with his daddy for a while before we took off for the weekend.   It is an unexplainable feeling to see the two most important boys in my life in one chair.


My friend Ginger had her baby today - what a great day for me to decide to up and leave town!  Dawson, Ginger’s son, was born seven weeks early but seems to be doing well.  He is breathing on his own already.  I wish I could be there for Ginger today but I had to get away.  I did give her a call to let her know that I understand and am willing to lend an ear anytime.


I found out a little later that Tiffany had her baby today, too!  I don’t know Tiffany that well – we’ve been to parties together at dad’s house, but she’s a friend of Amanda’s more than mine, but what that means is that Amanda now has three friends with babies in the hospital!  Tiffany and her baby are doing just fine.


There might not be a journal entry tomorrow depending on if I stay “checked out”.  We’ll see.



Friday, May 25, 2007  -  8 weeks + 6 days (2 calendar months), 5 pounds + 5 ounces


I walked into the nursery today and could not find my baby.  The nurses kept pointing to him but I was so shocked that he was not where I left him, that I could not see him – not to mention there was an isolette blocking his bassinette.  He was moved to make room for a new baby who needs more room than Jordon so he is now sharing a space with another baby.  The beds are starting to be doubled up due to the large amount of babies in NICU. NIM (NICU intermediate care nursery) is even starting to fill up.  One of the nurses said that when the weather gets warm or if it is a holiday weekend it gets really busy.  It was about 70 degrees after a long winter on the day Jordon was born and there were two other emergency C-Sections that day after mine, so she may be right.


Jordon is doing well today.  He did have a couple of spells when he was sleeping on my chest but he just gets so comfortable that he forgets to breath.  Jordon was cooing at Timmy when he was holding him.  He always seems to acknowledge Tim in that way.  But I can’t complain - Jordon makes eye contact with me for minutes almost on a daily basis. 


Sarah from Parent to Parent Partnership came to visit on just the perfect day.  I am having a hard time this week, especially today.  Jordon is doing well but is at a point where he is not taking leaps and bounds – this is hard to deal with.  His feedings are slowly being increased and it seems like so long before we can even give him a bottle – he has to be at full feedings, which is around 36ml and not on a continuous drip.  And the suck – breath – swallow reflex has yet to be learned.  He may not even take a full bottle the first few times.  He will be started out slowly with one or two feedings given by bottle and the rest through the feeding tube.  The end is getting near but it is so hard waiting for the day when we can take Jordon home.


Jordon’s feedings have been increased to 8ml an hour on continuous drip.  Only 6 more ml per hour before the feeding tube will be taken out of his intestines and left in his stomach!  Jordon’s weight yesterday was not 5 pounds 6.4 ounces, but 5 pounds 4.6 ounces.


Thursday, May 24, 2007 – 8 weeks + 5 days, 5 pounds + 4.6 ounces


Jordon is on day five of his feeding and tolerating it well.  Today his milk was increased to 6ml an hour on a continuous drip to his intestines.  He’s even doing well with the increases.  He has not had any apnea or brady spells all day!!!   That’s another step forward!!


I wasn’t going to see Jordon for an evening visit because I went to my friend Ginger’s baby shower, but since I was right in the neighborhood anyway for the shower, it was really convenient to stop and see Jordon.  I was able to give him a bath at his 8pm care time.  I didn’t stay very long after that, though.   


Wednesday, May 23, 2007 - 8 weeks + 4 days, 5 pounds + 4.6 ounces


I had an optical appointment this morning which messed up the whole day.  I had to get out of bed before I had enough sleep so I was very tired when I went to see Jordon today.  I had to get a nap so I left after only being there for an hour but came back right after the nap.


Jordon is doing well today.  He has a rapogal set to gravity to allow excess acid to leave the stomach without it refluxing.  He is getting 5ml of milk an hour on continuous drip to the intestines.  It is getting to the point where he is consuming more milk than I can produce so we will start to mix the breast milk half and half with formula.  I could use some prayers to produce more milk for Jordon!


My Grandma and Grandpa Lotterman made a surprise visit.  They were waiting in the waiting room when I went to get some hot water to make a cup of tea.  They always seem to come at the right time.  Tonight they were there for Jordon’s 8pm care during which he is weighed.  We pulled up a couple of chairs to Jordon’s bassinette and talked for a while.


Tuesday, May 22, 2007 – 8 weeks + 3 days, 5 pounds + 6 ounces


I brought my sister-in-law to the hospital ER today because she had some sharp pains in her side.  Everything is OK – she was sent home with some pain pills.  My mother-in-law and father-in-law were also there to keep her company.  After she was released they all headed upstairs to see Jordon.  Mom got to hold Jordon for the first time.  We would have let Dad hold him too, but we don’t want too many people holding him too close together or he may get over-stimulated. 


Jordon is doing well today.  He only had two bradys and both were self resolved.  His feedings were increased to 4ml per hour, which makes us half way to full feedings.  Once he is tolerating full feedings, the feeding tube will be pulled out of the intestines just enough to be in the stomach.  If he tolerates that, the feeding will be given to him as a mass feeding instead of a continuous drip.  Once he tolerates that, he will be fed through a bottle to teach him the suck – breath – swallow technique so he can go to the breast – that will be the day we’ve been waiting for!


Tim and Jordon took a nap together when I was away pumping for Jordon’s milk.  It was so sweet.  I am never able to fall asleep in there because it’s too noisy, but Tim can sleep through anything. 



Monday, May 21, 2007 – 8 weeks + 2 days, 5 pounds + 4 ounces


Not a lot happened today again.  Jordon is on day three of feedings – he’s now getting 3ml of milk per hour on a continuous drip.  He’s getting spoiled by me holding him the whole time I’m there but I have to make up for the hours we are apart.


I spent almost the entire day at the hospital because I start to miss him when I’m not there.  I’m getting impatient of being at the hospital – I want to bring him home now.  I want to take care of him myself – me and my husband, without all the nurses.


When I did get away, I went to see my nephew Tyler.  I used to see him about every other day, but now that Jordon was born early I spend most of my time with him.  Tyler is getting so big, he even has a couple of teeth.  We crawled around on the floor for a while, playing with his toys and then I fed him dinner.  I sure do miss him and don’t realize how much until I see him again.



Sunday, May 20, 2007 – 8 weeks + 1 day, 5 pounds + 3.4 ounces


*** PHOTOS - Click HERE  ***



Gary spent the night last night and I woke up as he was coming out of the bathroom.  He was not feeling well.  After Tim and I brought Gary home, Tim started to get sick.  So I packed my overnight bag and left for the day and will spend the night at my dad's.  I want to spend all my time with Jordon and if I get sick I can't be there. 


I met my Mom and Ray at the hospital.  They were there to see Jordon as he was being transferred from an isolette to a bassinette - Yay Jordon!!!  They were also at the hospital to see Grandma VanDyke, who was admitted to Spectrum on Friday for observation.  Grandpa is sick, too and he asked them to stay there with her.  Grandma was given a med to help calm her down and slept most of the day including both times I went to check on her.


Jordon's Grandpa Lotterman came after shift change.  He seemed to like that Jordon was out of the isolette and in a crib where he is easier to be touched.  He was even able to pick Jordon up without opening a door and arranging the wires to pull him out.  He just stood there holding Jordon for a really long time. 


Not a whole lot changed with Jordon today.  He still being fed (day two) and tolerating it - awesome!  He still is a little fussy from the gas but he is given a few different meds to help with the discomfort. 



Saturday, May 19, 2007 - 8 weeks, 5 pounds + 1.4 ounces


Not much happened today.  I went to the hospital and held Jordon as much as I could.  My mom and step dad Ray came to visit.  Ray got to hold Jordon for the first time.  He was a little tense - probably from all the cords and tubing that he had to keep straight during the hold.


Jordon is obviously feeling better today.  He is not fussy at all and has been sleeping well in my arms all day.  His caffeine was increased yesterday and the Zantac was put right into his TPN.  He also is getting 1ml of milk on a continuous drip right to his intestines.



Friday, May 18, 2007 - 7 weeks + 6 days, 5 pounds +1 ounce


Jordon was a little fussy still today but not nearly as bad as yesterday.   He was given Maalox for his belly and he was resting in my arms in no time.  He had a study on his lower intestines that showed no obstructions or scar tissue.  Hopefully his digestive system will start to mature soon so he can digest his food properly.


Tim and Chrystal showed up as I was getting ready to leave for the day.  Chrystal was happy to be able to hold Jordon for the first time.


I had a good time tonight at the party that replaced the benefit.  I talked to Dave and Diane for quite a while – they are a really neat couple. 


We were still able to raise some money through a raffle.  A side-by-side massage including pickup and drop-off in a 1956 Bentley was donated by Vasaio Life Spa.  The winners were Joe and Aja – my dad’s next-door neighbors!   We also gave away an assortment of 12 “tasty” beers – Colleen from Lawson won that.


Sue, my “mentor,” had taken up a collection at her work and many of my dad’s clients donated as well.  Thank you so much for all the donations and moral support we have received throughout Jordon’s stay in NICU!  Words can’t express how grateful we are!!!


Thursday, May 17, 2007 - 7 weeks + 5 days, 5 pounds + 1 ounce


Jordon was still a little fussy today – all he wanted was for me to hold him.  So that’s all I did the entire time I was there on both visits.


Jordon got sick a couple of times this morning and had a few more spells than usual.   It is obvious that he is not feeling well and his feedings have been held.  The doctor thinks that the hydrocortisone may be making Jordon act this way.  Hydrocortisone is a steroid which could cause fussiness and sores in the intestines, causing him to spit up old gritty blood. The plastic surgeon does not want to stop the med because the hemangioma will just grow back to its original size.  Instead the med will be given to Jordon on an every other day basis – hopefully this will help - I don’t like to see Jordon this way.


The doctors are also thinking about doing another study on the intestines.  This time the barium would be given to Jordon rectally to focus on the lower bowels.  I will let you know when and what the results are when I find out more.


My Grandma Kramer and my Mother came to see Jordon tonight.  I wish Jordon was feeling better for them.  If he was any worse I would have not let anyone come and see him at all, but he seems to be doing better tonight than this morning.



Wednesday, May 16, 2007 – 7 weeks + 4 days, 5 pounds + 3 ounces


Jordon had his eye exam today and was diagnosed with immature eyes.  This was just as expected and is common at this age of preemies.  Jordon will have another exam next week to make sure he is not getting ROP. 


I spoke to the doctor and received a GREAT report.  Jordon is now OFF the CPAP!!  He will only be put back on if he starts to have too many spells.  He has not had many in the last couple of days – maybe one or two per day is all.  Jordon’s bowels are sounding faster than last week and he is very optimistic that they will start to mature soon – the erythromycin is finally starting to do its job!!     


I had an especially hard time leaving after my nightly visit.  Jordon was very fussy tonight – he probably had a belly ache.  I learned today that he had been getting Zantac since the 14th.  He was due for his next dose as I was leaving for the night.  I will be sure to call to see how he is doing before I go to bed. 


Jordon is getting 2ml of milk every hour continuous drip into his intestines.  The doctor ordered to have the tube pulled up into his belly tomorrow.


Tuesday, May 15, 2007 – 7 weeks + 3 days, 5 pounds + 1.6 ounces


Today was a great day.  I got to the hospital around noon and Jordon was doing well but a little tired from the physical therapy he had this morning.  Babies born at his gestation get the therapy to insure the baby is moving around as would in the womb.  He slept the entire time I held him and didn’t even grunt at me.  He grunts mostly when I move him the slightest bit.


He is still receiving the erythromycin for his bowels but has not had a stool in three days.  The doctor will not keep Jordon on the med for more than 14 days so hopefully we start seeing some results.  He is still getting 1ml of milk to the intestines and is tolerating the feeding well.  Jordon is also keeping his body temperature consistent and could be in an open crib as soon as Friday.


Jordon is getting 1ml of milk per hour continuous drip.


Monday, May 14, 2007 – 7 weeks + 2 days, 4 pounds + 12.5 ounces


Not a lot happened today.  A plastic surgeon looked at Jordon’s hemangioma and decided to give him some Hydrocortisone to try to shrink it. 


Jordon did well with his first wean this morning but got tuckered out near the end.  All the work he has to do makes him sleep a lot, so I only was there for one visit.


Jordon is being fed 1ml of milk on continuous feed to the intestines.



Sunday, May 13, 2007 My First Mother’s Day!! – 7 weeks + 1 day, 4 pounds + 10 ounces


Tim and I went to my mom’s for dinner and later visited Tim’s mom.  I was only at the hospital for about an hour today.


My Mother had not been to the hospital yet this week because she was worried that she was getting a cold – it turned out to be just allergies.  She was anxious and couldn’t wait until next weekend so she and Ray came to see Jordon after shift change.  She too got to hold Jordon.  It was only for a short period of time because he was easily over stimulated today.


Jordon did very well with his 3 hour wean last night so the doctor ordered the wean for 6 hours today.  His 1st wean was when we were visiting our mothers and when we called the nurse she told us that Jordon did not have any apnea or brady spells.  He is also getting fed 1ml of milk every hour on a continuous drip into his intestines.  If he does well digesting the milk, the tube may be pulled up into the stomach tomorrow. 


The doctors are not too worried about the hemangioma on Jordon’s lip, but one doctor would like to have a plastic surgeon look at it as a precaution – this should happen tomorrow.  Also, some time this week, Jordon will have an eye exam to check for ROP.


Jordon is getting 1ml of milk every hour continuous feed.





Saturday, May 12, 2007 (seven weeks old today)



The doctor ordered to wean Jordon from the CPAP for 3 hours 2 times today.  He is a lot easier to hold when we don’t have to worry about the cords to the CPAP.  Grandpa Lotterman got to take advantage of this when he came to visit – he got to hold his Grandson for the first time EVER!!!  Jordon did well without the CPAP, but near the end of the wean he was a little tired.  The rule in NICU says that only the parents can hold the child when they are using breathing support – this is why Grandpa had to wait so long.


Uncle Ron, Aunt Lori and cousin Melanie came to meet Jordon.  Melanie was great with Jordon; she had her hand in the isolette nearly the entire visit.  Their visit was ended early when “Nanna” (Jordon’s Grandma Masters) came to visit.  She was unfortunately not there when Jordon was off the CPAP, so she was unable to hold Jordon.


I got a call from my friend Amanda.  She wanted to see if I wanted to go out tonight – Sounds good to me.  She picked me up at the hospital and we went to The Intersection for the Mega 80’s concert.  I can’t believe how much fun I had.  The concert was kicked off with a band that performed 70’s music and then the Mega 80’s performed.  It amazes me that I actually knew more of the music from the 70’s than the 80’s. 


The concert was standing room only and it was very crowded.  I was having fun but I was beginning to feel a little pain from the C-Section and needed to get off my feet, so I left during the intermission of the Mega 80’s performance.  I know I did not last the whole night but I sure had fun and no regrets of going out. 


Jordon weighs 4 pounds 11 ounces and is currently having his feedings held.


Friday, May 11, 2007


Jordon was resting well when I got to the hospital this morning, so I didn’t bother him by getting him out to play.  Amanda, Colleen and Lauren from Lawson came to visit on their lunch break.  Amanda just kind of watched but Lauren and Colleen got their hands in the isolette to touch Jordon.  Jordon frightened Colleen a little by having a brady when her hand was on his back.  She didn’t do anything wrong, Jordon was just too comfy and needed to be reminded that he needs to do most of the work – the machine will not do all the work for him.


Jordon is NTO (not being feed) again today.  The doctors think Jordon needs a little more time for his belly to go down.  He is still getting the Erythromycin to encourage his bowels to keep moving. 


I got to hold Jordon, but by now that’s not any news.  The good part is that Jordon was off of the CPAP for 45 minutes while I held him.  The nurse took the CPAP off to place Jordon in my arms and she decided to let him have a little break and put the CPAP back on when he needs it.  He did quite well - he was a little huffy puffy, but he did not have a drop in heart rate or respirations once.  It was soooo nice to be able to hold Jordon and not worry about the tubing from the CPAP.


I took a little break from reality tonight and went to a Ladies Night with my mom.  The hostess made some really good chicken and awesome salad that had almonds and raisins. I never cared for raisins, but the salad was great.  I actually put the chicken in the salad - yum!  I didn’t go back to the hospital because it was already a little before 9 and I was getting tired.


I was in Gary’s neighborhood on my way home, so I called Grandpa to see if I could take Gary overnight. Gary is my Step-dad’s 6 year old nephew and lives with his grandpa VanDyke (I call Grandpa VanDyke my grandpa, too).  I have known and have cared for Gary almost his entire life and I’ll tell ya - he loves his Kendra!  Poor boy – he doesn’t understand why I don’t spend as much time with him since Jordon was born.  I wish I could explain it to him.  He also has a hard time understanding why he can’t go to the hospital and see Jordon.  If Gary was MY son he could, because the germs would be shared throughout the household, but since he is not a sibling he can’t see Jordon. After I picked him up we went to see my nephew Tyler.  Gary and Tyler could play for hours. I really do miss Gary all to pieces – I wish he understood.


Jordon weighs 4 pounds 11 ounces and is currently having his feedings held.


Thursday, May 10, 2007  - Jordon DOUBLES his birth weight!!


Not a lot going on today.  Jordon’s feedings are being held due to a distended stomach.  This whole “feedings on, feedings off” is like a dog chasing his tail.  Jordon needs the CPAP to breathe which is the most important, plus he needs to be fed, but the CPAP pushes a lot of air into Jordon’s belly causing reflux.  Then to help bring down the distention and to give his belly a rest, the feedings are being stopped, to be resumed tomorrow.  And it seems the cycle starts again. 


I was really exhausted more than usual today, so I went home to take a 3 HOUR nap.  I must have needed it!  I don’t know what made me so tired so fast.  Pastor Bill from Wyoming Park United Methodist Church came to visit and as I looked up to him as we talked, I realized that I was not in any condition to be holding Jordon.  So I put Jordon back into his isolette and went home.  I did return after my nap to complete my visit.


Jordon weighs 4 pounds 9.7 ounces and is currently having his feedings held.


Wednesday, May 9, 2007


Jordon had quite a few spells through the night Monday – 18 to be exact. He is doing well today with only a couple of spells. My “Mommy” instinct makes me think Jordon had a stomach ache or some cramping due to the amount of substance being moved through his bowels.  After all, he has not been fed in about a week.  Jordon is on room air in his isolette (one day closer to a crib) and is doing great keeping his body temperature up, so I gave him a little sponge bath and then I did Kangaroo Care - I love the smell of clean baby.


When I returned from my doctor’s appointment I went to a parents meeting.  I was the only parent who showed up, so David (the Parent to Parent volunteer) and I talked for about an hour.  I was able to get some things out that I may not have if there were a group of people there with us.  It felt great to vent and let all my feelings out.  Since I knew Tim would be with Jordon I took David to meet them.  Tim and I later talked about how nice he was – I think it is cool that Tim finally met someone who can understand him.


I started telling people that they can call me to come up and see Jordon.  Ginger and Joe stopped by.  Ginger is pregnant and seeing her, I wish I could have carried Jordon to term but she just looked so uncomfortable. I kind of wonder how I would look now.  I told Ginger that her baby was growing inside of her but mine is growing inside his isolette.  Joe and Ginger were there to see the 8pm care and were able to see Jordon’s face.


Jordon weighs 4 pounds 6.6 ounces and is getting 2ml of milk per hour, continuous feed, all day long.  Jordon’s eye exam is scheduled for sometime next week.


Tuesday, May 8, 2007    PHOTOS!!!


Parent to Parent Partnership is a program in which parents who previously had a child in NICU mentor a mother who currently has a child in NICU. I met Sarah today – we think we may have met before but can’t figure out where.  I enjoyed getting to know her and can see a significant relationship building soon. She knows what I am going through and can mentor me and even be there as someone to talk to when I need it. Sarah had a preemie baby 7 years ago and now her daughter is a normal, beautiful child.


Jordon’s GI study was completed around noon and shows no visible obstruction.  However, Jordon had a couple of meconium stools. Meconium usually is passed a couple of days after birth but was stuck in his GI tract.  Just as a precaution, Erythromycin was still given to Jordon, not for infection, but to encourage the bowels to move faster. His feedings are also being resumed today.


Jordon is at the age where he should be able to maintain his own body temperature, so the isolette was changed to skin temperature. This means that the isolette is not heated. Soon Jordon should be in a hospital crib. This will be nice – I won’t need help getting Jordon out when I want to hold him and I won’t have to look at Jordon through a plastic wall.


He made me really work today about an hour before his afternoon care time. I was holding him and he started to fuss so I decided to put him back and change his diaper.  As I was changing him he threw up some old blood, so I changed his outfit and we snuggled some more. A few minutes after we sat down he had a soiled diaper… so once again I got up to change him and once again he threw up.  But this time I was able to save the outfit – or so I thought.  As I was finishing cleaning up the spit-up, Jordon started to pee.  I caught most of it with the diaper, but not enough to salvage the outfit.  So you guessed it… I changed his clothes again! Oh the laundry to come!


Jordon also got to see his Grandpa Lotterman. Grandpa was there for the best care time of the day. The 8pm care is when Jordon is stripped of the CPAP paraphernalia and weighed. Grandpa got some really AWESOME pictures of Jordon with a naked face – Grandpa was tickled!!  Here is one of the pictures that Grandpa Lotterman took tonight.




Jordon weighs 4 pounds 3.8 ounces and is getting 1ml of milk an hour all day continuously fed.


Monday, May 7, 2007


Tim and I had a conference today with Jordon’s doctor and social worker. The social worker made sure we were getting all the paperwork filled out for 30 day Medicaid and SSI. The doctor filled us in on Jordon’s care plan for the next few weeks. 


Jordon had a series of x-rays taken today to do an upper GI study. The study is done to see if there is a block in his GI tract. Jordon was given Barium and the x-rays were started this morning. As of 4 pm everything looked good.  The doctor is almost positive at this point that there is not an obstruction. Because of this Jordon will be started on Erythromycin and his feedings will be resumed. Jordon will not be on the Erythromycin for more than 14 days – by then Jordon should be tolerating the feedings. After all, the therapy is not a guarantee that Jordon will be able to tolerate food right away – it may take a while.  He will be started on 3 ml of milk which will be increased as Jordon’s body permits. The doctor is not worried about the number of spells Jordon is having and acknowledges that Jordon has more spells when he has food in his belly – which is what we are tackling right now. The TPN that the doctor was initially worried about Jordon being on for too long had not caused any damage to Jordon’s liver.  He is confident that we have some time to borrow before we need to stop the use of the TPN.


Jordon’s Uncle Josh came to visit as I was holding Jordon. Josh remarked on how Jordon looks happier than he did at Bronson Hospital. He was also excited to be able to touch Jordon’s belly during his care and loved when Jordon rubbed his hand and grabbed his finger. I had a great time today at the hospital but my evening visit was one to remember.


Chrystal was a little bummed that she was not with Josh when he came to visit so after dinner she came with me for my evening visit. As soon as we arrived we started Jordon’s care and he came out to play, He is really tired today from all the activity, so after his 8pm care he was snuggled in my arms and sleeping in no time. For his care I gave him a sponge bath and changed his outfit. He smelled so good when I held him!!


Jordon is a whopping 4 pounds 2 ½ ounces and is currently having his feeding held – hopefully to be resumed tomorrow!!


Sunday, May 6, 2007


Tim and I went to church this morning and sat next to Sue.  Sue is one of my biggest inspirations.  She had a preemie and has been sending me inspirational emails from the beginning.  After church we went to Grandma and Grandpa Lotterman’s for dinner - Grandma makes some mean ribs…yum!


Jordon is doing well today.  He had only a couple of spells.  Jordon and I snuggled for an hour and a half.  He started to get squirmy so we put him back so I could change his diaper.  I was told that the doctor wanted to try the operation tomorrow.  Hopefully Jordon is able to stay off the CPAP long enough.  The operation is not a big deal.  Jordon will be fed a contrast die and then a series of x-rays will be taken of his digestive tact to see if and where there is an obstruction.


Jordon weighs 4 pounds (!) 0 ounces and is currently having his feedings held.




Saturday, May 5, 2007


Tim and I got up this morning to go to the Eastgate sale. My mom met up with us and later Mom and I went to my cousins Krista’s bridal shower. It was nice to socialize - lately I have felt so out of the loop with everything. I called to check on Jordon a couple of times and he was doing well.


Mom and I went to see Jordon after the shower. He looked as if he was sleeping well but it was his care time so we woke him up. He grunted at me as I flipped him over to change his diaper. Mom was excited to be there when Jordon was being weighed. She is amazed that Jordon looks so much bigger than the last time she was there. Jordon was really alert for about half an hour after his care. As soon as he was in my arms he was sleeping soundly again. I did share, too - when Tim got there I let him hold Jordon.


Jordon’s feedings are still being held. The doctor said that they will try to do the operation Monday or Tuesday but if Jordon does not do well without the CPAP they will have to do it right in the nursery. The doctor thinks that Jordon may have a blockage from left over meconium, or even a little scar tissue. The test will verify that. Most likely, if there is left over meconium, the contrast that is fed to Jordon will be thick enough to push that out of the way.  If it is scar tissue, another route will have to be taken. I have not asked what will happen if there is scar tissue – I’ll be sure to ask the doctor tomorrow.


Jordon weighs 3 pounds 14 ounces and currently his feedings are being held.



Friday, May 4, 2007


Today was just as normal as most. I got up, got ready and went to the hospital to be with JoJo.  He has been having a hard time with breathing because of the tube that was running to his intestine. When it refluxed, it caused Jordon to have a brady. The doctor decided to take the tube out to prevent this from happening any more than it already has. He would like to let Jordon rest for a couple more days to recover from being off the CPAP. Monday he would like to see if Jordon is strong enough to be off the CPAP long enough to do the operation. Until then his feedings are being held.


I came home for dinner and went shopping with Lisa. It was nice to get out for the night. However, I was unable to stay away for the night. I did not get home until around midnight - what a late night!


Jordon weighs 3 pounds 12 ounces and is currently having his feedings held.


Thursday, May 3, 2007  Photos


As I read the guestbook entries I realize how much support we have all over the country. I want to thank everyone for being there for our family in such a great time of need. I also love your emails and guestbook entries - I get most of my motivation from all of your words of wisdom and concern. THANK YOU SO MUCH!!!!


I walked up to the back side of Jordon’s isolette today and had to go around to the other side where his name tag was to make sure I was looking at the right baby. I knew the blanket on top was his but the baby inside did not have all the CPAP pieces on his face. I had to even look twice to make sure. I haven’t seen a whole lot of Jordon with nothing on his face so I could not really tell you what he looks like. If you would ask me I would say: “well he has dark blue eyes, thin lips and a bar running under his nose to help him breath. I’m not sure if he looks like me or his daddy.” Sure enough it was Jordon - what a beautiful boy. He lay there in a white tee (for preemies) and no hat. His hair is so dark and fine. And he looks so cozy I wanted to climb in there and snuggle up to him.


The reason Jordon was not on the CPAP is because the doctor ordered a procedure for which Jordon needs to be on the nasal cannula. The procedure is to check to see if there is an obstruction in his upper GI or his bowels and if there is the obstruction it would need to be removed. In order to do this Jordon would have a series of x- rays after being fed a substance that shows up on film. I was afraid it would come to this but I did not think it would be this soon. Since Tim had to make a delivery in Twin Oaks he was too far away to get here, I was real close to calling my mother to see if she would sit with me while Jordon was having the procedure. Good thing I didn’t - after returning from a break I found Jordon on the CPAP once again. He has too many apnea spells and needed more assistance from CPAP, so the doctor canceled the test and will reschedule in a couple of days.


Because Jordon is having a hard time with his feeding and we still are unaware of what is going on we may need to limit the guests next week as well. Jordon does not do real well after his feedings and often has spells. 


Jordon’s Grandpa Lotterman showed up just as we completed the weigh. He gave me a hug and quickly went to the other side of the isolette to see Jordon. The first thing he said was “man - he got fat!” 


I was able to hold Jordon and the three of us sat next to the isolette while Grandpa and I chatted.


Jordon weighs 3 pounds 11 ounces and for now is being feed through a tube that is bypassing the stomach straight to the intestines. He is getting 1ml of milk per hour continuously every hour.


Wednesday, May 2, 2007

Today was really uneventful so I don’t have much to write.


I held Jordon the whole time I was there today - I would rather stare at him while he is in my arms rather than through a plastic cage.  He did well in my arms and only had a couple of spells but nothing real serious. He did not start spitting up until he was back in the isolette - it may be that he needs to be reclined and not lay flat. He is not digesting a whole lot of his food but enough for him to have a bowel movement. He has not had one since Sunday.


I gave Jordon his first sponge bath - once he’s not on the CPAP he can have a real bath.


Jordon weighs 3 pounds 10 ounces and is on 4ml of milk continuously within two hours every three hours.


Tuesday, May 1, 2007


I went to my first support group at the hospital today. I met a few sets of parents and can see some friendships growing in the next couple of meetings. We sat around a large conference table over a light dinner and talked about whatever came up. It is amazing how I can relate to the mothers and fathers in this group. It is also great that I know there is someone there to talk to who understands what I am going through and really cares enough to listen without being scared or needing comfort from me. When you talk to another NICU parent they know that grieving is something that comes and goes. You may be fine with things one day and be an emotional wreck the next day. We know that our days will be based on how our children are doing - if he is having a bad day so am I and if he is having a great day, my spirits could never be higher.


Jordon started getting feedings again but is having a hard time digesting the food. He also is getting reflux and this time it is coming all the way out - it appears he swallowed some blood too. It is hard to say where the blood came from. He is suctioned every three hours and there is a tube for feedings going to his belly which could have caused some irritations. He is not as feisty as he was before the feed so he might not be feeling the greatest. I know that when things come up the burning can be an annoyance and it causes Jordon to have a “Brady.” A Brady is the term they use for a spell or episode at Spectrum. Since the vocabulary is different here than at Bronson mine may change as well. The doctors are still observing Jordon to learn how he reacts to the feedings; they may try a few different things to encourage his bowels to speed up before they consider surgery - hopefully this is not going to be needed.  Jordon also figured out how to pull the CPAP off and did so a couple of times already. He is wearing clothes now- even though they are humongous on him. He only has a few outfits so some days he could be just swaddled.


Jordon is 3 pounds 7 ounces and is getting 2ml of milk continuously within two hours every three hours.


I thought I should clarify something: When I state the amount of milk Jordon is getting it is for one feeding. Jordon is fed around the clock every three hours. If he is fed differently I will state so as I have above.


Monday, April 30, 2007


Tim had the day off from work so we took advantage of it and moved all the stuff out of my studio apartment in Kalamazoo - and I’m not looking back!!!!! Surprisingly, we fit everything into a small pick-up truck and my car. It took a while and we did not get back to Grandville until around 4pm. Then Tim and I brought all the furniture that my dad let us borrow back to his house and since we had a pickup, we took some things out to my Mom’s in Belding. We have so much stuff in the Grandville apartment that we have to clear out to make room for the baby - and man, am I in a nesting phase! I want to go through things and get rid of the things we don’t use. I want to put together the crib and set up the nursery so it’s ready for Jordon, even though he will be in our room for a couple of months. The doctor estimated another 5 weeks for before he will be coming home and I’m sure that will go fast.


I did not make it up to the hospital to see Jordon until 9pm and his daddy didn’t get there until 10:30pm. Since my sister Angela was at Dad’s and she lives so close to the hospital I invited her to come with me. Jordon is having a great day - he only had one spell and that was when he had the hiccups after his 8pm care. He cried when the nurse took him out of my arms.  He was so cozy!


Jordon weighs 3 pounds 7 ounces and is currently having his feeding held.



Sunday, April 29, 2007


My mom and Tim and I went to Wyoming Park United Methodist Church this morning. The service was quite different - we worshiped in the basement over breakfast. It was a celebration for our church. Tim and I received a prayer shawl as well. The shawls are made by members of the church and blessed by the congregation. The shawls are to keep people warm and to provide comfort during their time of need.


Jordon is doing well - he has been on the straight CPAP for two days now with minimum spells. The doctor is concerned with the reflux. He is not sure how to approach the problem, so Jordon’s feedings are being held for today so he can observe and “learn” Jordon.  Also, Jordon is getting Lipase to supplement the nutrients he is not getting from the milk. Lipase if used for prolonged time can cause liver damage, so finding a way to get Jordon to tolerate feedings is crucial. The doctor is going to do a non-standard treatment of Erythromycin to encourage the bowels to start moving faster. The severity of Jordon’s reflux is uncommon and if the treatment does not work and we are unsuccessful with any treatment and Jordon is at 37 weeks gestation age, he may need an operation to correct the condition. Please pray that the doctor has the wisdom to treat the reflux and that Jordon will not need surgery.


I held Jordon almost the entire time I visited with him both afternoon and evening visits. My mom was there this afternoon and Chrystal came to visit this evening. They are able to visit and touch Jordon if I am holding too, so why not hold him as much as possible? Jordon has started to cry when he is put back into his isolette. He gets so cozy that even when I move him a little he grunts to let me know “how it is.” I get cozy too - I dozed off for a few minutes when we were Kangaroo Caring.


Jordon is 3 pounds 5 ounces and is his feedings are currently being held.


WEEK 5   Photos


Saturday, April 28, 2007


Jordon had a great day today. The doctor placed him on straight CPAP around 7AM and he was still on it when we left at 10PM. He only had one spell today but it was not a real serious one.


The care here is great - THE DOCTOR called me this morning to let me know Jordon had an X-ray and that Jordon has a lot of air in his belly. He ceased the feedings and will slowly introduce them back tomorrow. They will not increase as fast as at Bronson - here they have a “protocol” and based on Jordon’s birth weight, he will be on 3ml for 5 days before the feeding is increased once more.


Mom and I did a little shopping - it was nice to know that I was home and Jordon is only 10 minutes away. As soon as we got what we needed we went to see Jordon. Later, my Grandma and Grandpa Lotterman, and my Aunt Tricia and Uncle Dale came to visit. They were in the room at just the right time and were able to watch as the CPAP parts were replaced and could see Jordon’s face. Grandma and Grandpa did not stay in the nursery long because they spent a lot of time with him on Wednesday.  After their visit we all went to dinner at Applebee’s.


One of the nurses (there are many different types of nurses) told me to Kangaroo Care daily to help “let down” the milk supply. This means I get to hold Jordon every day - So awesome!


Jordon weighs 3 pounds 6 ounces and is currently having his feedings held.  Today, Jordon is 5 weeks old!



Friday, April 27, 2007 


Photos of Jordon’s first night at Butterworth


I got a call from the case manager at Bronson around noon to inform us that the insurance company would not cover a transfer to Grand Rapids but she would check with Medicaid. At 12:30 she called to let me know that Medicaid would cover the transfer. At 1:00 PM Tim called and let me know that Jordon would be transferred at 3:00. This meant I had to complete my WIC appointment in Grand Rapids and get back to the hospital in Kalamazoo so I could see Jordon off.  Since I was in GR this was a little hard to do.  I made it there at 2:30 - just in time.  Or so I thought. We were held up for a few hours and did not actually leave until 9:00 PM!


Jordon’s Grandpa Lotterman was at Spectrum waiting when I got there.  Shortly, Timmy arrived as well as Jordon. Jordon came in a big blue “Bronson Children’s Hospital” ambulance – very impressive.  We couldn’t enter the hospital with the crew, so we found our way to the NICU and eagerly waited in the waiting room. Pretty soon Jordon’s Grandma VanDyke showed up.  Finally, after about 45 minutes, we were allowed to see him in his new room.


The trip was a breeze for Jordon - he did very well. He settled in quickly to his new area (or maybe it was us that settled in quickly). Shortly after we were with Jordon, the doctor came in to greet us. He gave us so much information and I was whipped from the day that it was completely “information overload”. One thing I can tell you is that it sounds like they will take great care of Jordon here.


Jordon is 3 pounds 4 ounces and is getting 7ml of milk continuous feeds.



Friday, April 27, 2007


The following entry was NOT written by Kendra, but by her dad:


After a long day of waiting and indecision and uncertainty, Jordon was moved to Butterworth in Grand Rapids this evening at about 9:00 PM.  He handled it very well.  His Grandma VanDyke, Kendra, Timmy and I got to see him lying in an open bed for a couple of hours before Kendra gave up and went home – she was extremely tired and Jordon probably was, too.  It was a very long, busy, and emotional day for her.


He is doing very well after the move and the doctor is already quite optimistic.  Kendra is elated to be “home” in Grand Rapids.  The room that Jordon was in can accommodate six or eight babies, so it was like going back to the “old” facility at Bronson.  We were afraid there would be a huge room with a hundred babies in it.


It was decided that it would be best to limit visitors for the next few days while Jordon settles in, and to restrict visiting beyond that time to one or two groups of no more than two persons per day.  Believe it or not, visiting can be very stressful on both Kendra and Jordon, and this decision was made in both of their best interest.  Kendra is going to try to hold off on visits until later next week.  The visiting rules at Butterworth are tighter, too, and Kendra and Tim need to work out a schedule for visiting once they get settled in.  Please, follow the rules they come up with and don’t make it difficult for them by asking them to make exceptions.


Kendra should return to writing tomorrow.




Thursday, April 26, 2007


I woke up this morning at 8AM and couldn’t get back to sleep, so I got out of bed and headed to the hospital. This is the earliest I have been here - usually I am here late the night before and don’t get to bed until around 2AM.


Jordon’s doctor is optimistic for Jordon and is taking the rate from the CPAP.  The vent is still hooked up and he is not on the bubbles yet, but he has been without rate for 10 hours and doing well. If he continues to do well, the vent will be replaced with the bubbles. Jordon only had a couple of minor spells today - nothing where he had to be stimulated. He was able to pull through them on his own. His feedings were also increased today to 3ml of milk continually per hour.


My Dad came down this morning.  I was Kangaroo Caring for Jordon when dad arrived.  We sat and talked for an hour and a half.  When it was time for us to get lunch, and the nurse put Jordon back in the isolette,  he started crying. He was so sleeping so nicely and he was enjoying his skin to skin contact with me so much that he did not want to be put back.  For me it was almost like he was taken away from me again, like he was when he was born and taken to Bronson.  After Jordon was back in the isolette, he settled down and then became very alert for my dad.  Jordon had his eyes wide open and for much longer than usual - my dad loved it!  It was hard for him to leave. Later my friend Jana from high school came to visit. She lives here in Kalamazoo, but this was the first time we could get together with our busy schedules. We couldn’t believe it has been 5 years since we graduated. We caught up on life and talked about our current families. We never thought 5 years ago that we would be married and have children.  Wow, life goes fast.


We started the process of the transfer to Grand Rapids. The insurance company “needs more information” to determine if they will cover the expense.  If they don’t, Medicaid will pick it up.  We did find out that there is room for him at Butterworth and they are expecting us. It does not look like we will be in Grand Rapids by Saturday, but hopefully we will before the end of next week. The social worker told me it could take 2 hours, two days, or maybe even longer.


I got to relax a little - Bronson let me use the birthing tub to soak.  They call it hydro-therapy.  It was so relaxing that I could feel the tension leave my body. They filled the room with aromatherapy, had a battery powered candle and even a relaxing CD for me. I guess I was the first one to use the tub, but I don’t know. This tub was huge! It is big enough for two people and maybe even a small child.


Jordon weighed in tonight at 3 pounds 4 ounces and is getting 3ml of milk continually.


Wednesday, April 25, 2007


Jordon did not have any spells today!!! He’s been full of energy for the last day and a half. Jordon’s nurse said last night he wiggled himself up to the head of his bed in his isolette. He definitely does not like to have a wet diaper either. I was sitting in the chair next to him and he started fussing, when I checked he was wet. His nurse said he did that last night too.  Jordon’s feedings are now bypassing his stomach and continuously fed into his intestines. This helps prevent reflux by not having any food in his belly, in turn minimizing the spells.


Jordon’s Great Grandma and Grandpa Lotterman came down to visit tonight. Grandpa said he could not see much past the CPAP so he made sure he was there during his care. During care the CPAP and his hat is removed for the weight check and to suction his nose. During this time you are able to see a lot more of Jordon features. We had a very nice visit and Grandma and Grandpa enjoyed seeing Jordon’s face. We went out to the Fricano’s in Alamo.  The pizza was good but not nearly as good as the restaurant in Grand Rapids, Grand Haven or in Holland.


Since Jordon is doing so well, Tim and I decided to have him transferred to Spectrum Butterworth. He is doing well now, but there is a chance that he can take a step back like he did last week. Just to be sure Tim and I decided now is the best time. Also, if we don’t transfer him and wait until he is more stable, the insurance company may not cover it because he is too close to discharge. Now seems to be the right time so Jordon’s social worker will get in contact with Spectrum to see if there is room and then the insurance company to work out all the details. If all goes well, Jordon could be in Grand Rapids as soon as Saturday. So if you were planning on coming down in the next few days, I don’t know when and where we will be.


Jordon weighs 3 pounds 2 ounces and is getting 2ml of milk continually per hour.


Tuesday, April 25, 2007


Milestone: Jordon weighs 3 pounds – what a big boy!!!!


Jordon’s doctor would like to keep Jordon off the milk one more day to give his belly a rest. The X-ray looks good but still shows a little bit of air. Since we now know that Jordon’s spells are related to the feedings, the doctor needs to find a way to get around it. When Jordon has a full belly and the CPAP pushes air in it causes reflux. In turn, Jordon tenses up and holds his breath making his heart rate drop. To prevent this from happening, the doctor is considering bypassing the stomach for feedings.


I was able to hold Jordon for about 40 minutes but he started to get restless, so we put him back. He has been fussy all day.  I think he may have a belly ache or maybe even feel a little hungry.  But one good thing about him kicking in rebellion is it shows he is feeling better.


Just as I was getting ready to leave the hospital for Grand Rapids I had a surprise visit from Debbie, the choir director from WPUMC. If she would have been 20 minutes later she would have missed me. Jordon liked it when Debbie talked to him, he even opened his eyes for her right away.


I am at home for the night and missing Jordon tons, but Tim called his nurse and he is doing well - NO SPELLS!!! Tonight he weighs 3 pounds 0 ounces and is currently having his feeding held.


Monday, April 23, 2007


Ashli from across the hall went home today.  I knew I would take it hard and as soon as she left I broke down. It’s not her fault that I felt this way;  I guess it’s just that I may be a little envious and at the same time disappointed that she’s not here anymore. It’s hard to see the babies all ready to go home - there were two today. All the nurses go and see them in their car seats all snuggled up.  If I want to see my baby I have to look through a plastic cage - how nice! I look at him as though I am a child in a pet store waiting for the puppy to be big enough to take home. Sometimes I even feel like the children in the “Cat in the Hat” book where they’re looking out the window waiting for the rain to stop to go out and play. It hurts when he is so sick that he can’t even be taken out to be held. I long to hold him in my arms and to nurse him rather than a machine doing the job for me.  I hate that he can’t breathe on his own and he needs to be resuscitated. I don’t like to see him unhappy when the nurses are messing with him and to top things off, the only way I can comfort him is to place my hands on his itty-bitty body and talk to him with a gentle voice. I also feel a little torn - I hate to be away from my husband and I can’t be that far away from my baby but then again, BABY IS TRUMP.


He was a bad boy this morning when I got here; he would not bring his heart rate up so the nurses used the neopuff. I had a hard time emotionally seeing this so I decided to go out into the lobby and have a coffee with a little hot chocolate added to make a mocha.  I sat down next to a couple named Carrie and (I can’t remember his name).  They had a 4 pound 5 ounce baby, Chloe.  She was on an apnea monitor and dressed in a cute pink outfit. I sat and talked to them for a while about their experiences in the NICU. It was reassuring to see a baby out in the real world even if she still had cords. We exchanged email addresses and I hope to keep in touch. 


Jordon has had a few too many spells today so his doctor ordered a blood test and an x-ray of his belly. He seems to have the spells after his feeding but his labs came back negative with a good white blood cell count - no sign of infection. The x-ray, however, showed a distended abdomen - free air in his tummy, so she decided to hold his feedings to give his belly a rest and to start an antibiotic just to be on the safe side. He also had his caffeine increased from 9ml to 10.5 ml. Before we know it he’ll be getting as much caffeine as in a cup of coffee…hahaha!!


My Aunt Deb, Uncle Ted and cousin Lindy came to visit tonight. It was a short but wonderful visit.  Lindy’s baby was early, too - I think 6 weeks. We compared our experiences and talked about the future. It’s great to be friends with Lindy this way. We were so close as children and the older we got the less we talked - enough of that, right Lindy?!!


The room across the hall (Ashli’s old room) has already been taken. As I look across the hall to the prepped room I stand emotionless thinking of the horror someone is going through right now. I don’t wish this pain upon anyone, not even my worst enemy. Someone is in premature labor and their emotional rollercoaster has just begun. I hope I can be a friend and understanding person to the couple who will soon fill this room. It is hard to go through this alone and not have any NICU friends - I hope I can be that to this baby’s mother.


Jordon weighed 2 pounds 15 ounces today. Currently his feedings are being held.



Sunday, April 22, 2007 – 4 weeks old today!


Today was a lot easier to handle than yesterday. Jordon has been doing exceptionally better, however he is still not doing real well. He is extremely touchy when he is getting his care - he does not handle it as well as he did even a week ago. He has been rather quiet today other than his outbursts at the nurses for messing with him. Jordon has not needed the neopuff either because he has not had any real spells - that is good news!!


Jordon’s Grandma and Grandpa VanDyke came to visit today and this time I made dinner for them.  I tell you what - I will never complain again of having a small kitchen in our apartment in Grandville. The kitchen here is so small that it is rather difficult to prepare a Sunday dinner but I did it and it was great. Jordon’s Grandmother spent a lot of time with her hands in the isolette with few interruptions from others wanting to get in. Tim and I were still a little exhausted from last night so we had been a little detached from Jordon. This is a common thing for parents of premature babies to be detached now and then. Sometime I feel detached and guilty and proud to be a mommy all at once.   The array of feelings can be overwhelming but this is common as well.


Well, I said goodbye to my husband and I am doing well so far - Tuesday is just around the corner and I can stay the night at home-home. Maybe I got a handle on the routine and Sundays will be easier from now on. I beat myself up when everyone leaves at the end of the weekend, I hate to have to be alone and I seem to set myself up for misery.


Jordon had enough during his 9pm care and we were unable to weigh him. His nurse decided to let him rest and she will weigh him at the midnight care. I will be sure to let you know Jordon’s weight in tomorrow’s entry. Currently Jordon is getting 7ml of milk.


WEEK 4   Click here for week 3 and 4 photos


Saturday, April 21, 2007


I never stopped to remind myself that things aren’t that easy and that Jordon is a preemie and sometimes he takes a step back. I was very optimistic after speaking to Jordon’s doctor on Friday – “he should be out of the woods soon”  - or so I thought.  All was going well, he looked nice and pink from the blood, he was tolerating his feeds and he was having less serious spells less often. My hopes were sort of shattered tonight after Jordon had a series of serious spells, a couple where he actually needed the neopuff.


Tim and I just stood there watching the respiratory specialists work on our baby. Jordon was lifeless and his skin was on the dusky side. Holding on to one another was all we could do - for a moment we were helpless. Still, beneath the worry, fear and doubt, there was a part of me that knew he would make it through this, I just didn’t know when.


I also became aware tonight of Jordon’s extreme ability to fight to stay alive. I was not able to carry him to term and now he has to the pick up the slack my body could not. Please don’t get me wrong – I’m not blaming myself for Jordon‘s coming prematurely - if my doctor and I knew my body was unable to carry to term, we would have done everything medically possible to keep Jordon in as long as possible. I am very proud of our 2 pound champ.  I can’t quite explain this feeling, but Jordon is my hero!


At this point we are not sure what has caused all the spells. He had blood work done to check for infection and a chest and abdomen X-ray taken - both came back negative. Jordon has a little tenderness on his belly but the X-ray showed that the air is getting through nicely and there appears to be nothing wrong. Just to be positive another blood test is ordered for sometime tomorrow, otherwise hopefully he just needs to have a bowel movement and this will all pass. But there I go again getting ahead of myself.


Jordon is getting 7ml of milk and weighs 2 pounds 15 ounces.



Friday, April 20, 2007


I just spoke to Jordon’s doctor and she said he will be “out of the woods” when he is getting less assistance with his breathing. He could be on straight CPAP as soon as Saturday or Sunday.  Jordon has been having a lot of spells and the doctor thinks Jordon needs some iron. The only way Jordon can get the iron enriched blood, since he can’t have it orally, is through a transfusion. Not only is the iron good for Jordon, but the extra antibodies in the blood will help all together. If Jordon has less frequent spells and continues to tolerate the feedings, the doctor will take the rate from the CPAP. He may not do be able to handle the straight CPAP so the rate can be added back in a matter of minutes without any harm to Jordon.  The survival rate for preemies born at 27 weeks gestations is at 80% and she is really confident that he will come home with us.  She can’t say, however, if he will have any special needs in the future. But that doesn’t matter - I love him either way!!


Jordon had another IV placed today for the blood transfusion. On the first try his vain collapsed and he had to get another poke, but he handled it very well. He was given a drop of sweet liquid on his pacifier that releases the happy hormones and I held his feet for comfort. Before we knew it he was back to sleep and the transfusion was in progress.


Jordon is a healthy pink now that the transfusion is complete. Really, I have not seen him this pink in a few days - this is very exciting. He also has had only one real episode since he got the blood, and it was a rather small one too.



Timmy is FINALLY here for the weekend - I’m so happy. It is a lot less quiet around home with him too. I usually don’t have the TV on but the first thing he does when he walks in the door is turn on the TV! I also have to share my space with him and when I’ve been alone all week that can be frustrating.  Despite all this, I am delighted to have my best friend here for the weekend, even if I have to share my bathroom!!!!


Jordon is on 5ml of milk and weighs a whopping 2 pounds 13 ounces. Please pray that Jordon tolerates his feedings and he reduces the amount of spells he has been having. 


And thanks for signing my guestbook – it means a lot to me.  You can even sign it more than once if you want to.


Thursday, April 19, 2007


Timmy woke me up when he called to tell me he would be at the hospital around 11am.  I have not seen him in so long that I couldn’t get back to sleep and I had to get up there.  As I walked into Jordon’s room, I noticed that Jordon was unwrapped, kicking his legs and whimpering - apparently he had just had “a spell”. It is hard to be there when Jordon goes through that and I thought Tim looked a little pale too. I quickly rewrapped Jordon and placed Timmy’s hand on Jordon’s chest to calm him.  Shortly he stopped crying and Timmy was relieved.


Jordon had not had as many spells, but he still has more than I like to see. The caffeine seems to be helping a little today and maybe even more tomorrow. The doctor said she would like to keep Jordon and the same amount of milk and take it slow when it comes to increasing. She likes the way he is handling the 4ml he is on, and may increase tomorrow. I have a lot of questions and wish I could have spoken to her, but I was not there when she spoke to Timmy.


Jordon came out to play again - this time for about 2 hours. As the snuggle session was coming to an end, Jordon’s Great Grand Mother and Great Grand Father Murray came to visit. Grandma was happy to see more of Jordon since he was out of the isolette, so she placed her hand on his chest. 


As soon as Timmy arrived we went to get dinner at Applebee’s.  We all ordered the same thing- how often does that happen? I loved to spend some time with Grandma and Grandpa Murray, and see my husband for more than 5 minutes. I sure do miss him when he’s not here.


Jordon is getting 4ml of milk and weighs 2 pounds 13 ounces. That’s my big boy!!!



Wednesday, April 18, 2007


I can’t believe I slept until noon and I have a lot to get done before I can make it back to Jordon.  I have to bring everything down to the car (I even forgot some things), go get some groceries for Timmy, get to Lowes to pick out the colors for the nursery, and put gas in my car.  I got mostly everything done when I got a call from Wendy Clark from WPUMC.  She and Michelle Piper are on their way down to see Jordon.  So I quickly brought Tim’s groceries up and hit the road. Wendy is the parish nurse and Michelle had a preemie baby too.  It was nice to be able to talk to someone who could relate. Once again I received grace from WPUMC.


A few minutes after they left, my dad picked me up to go to the best Gyro restaurant in K-Zoo, Stacie and Theo’s.  If you ever get a chance and happen to be in K-Zoo you have to try this restaurant - it is the best.  I was able to do “Kangaroo Care” when we got back to the hospital. Kangaroo Care is where the baby is placed on my bare chest and we both are covered with a blanket.  This is really good for the baby (and I don’t mind it either.)  He was out for about an hour.  Just before the time my dad was planning to leave, the nurse said she was going to take all of Jordon’s breathing apparatus off and replace it.  My dad was really excited to see Jordon’s bare face so he stayed a bit longer to do so - we even got a couple of good pictures where Jordon does not look too stressed.  Here’s one of them - We’ll post more real soon.



Jordon still had a hard time with his heart rate.  All day he has been having episodes where his heart rate would drop due to the amount of oxygen he was not taking in. He even had a couple of episodes when I was holding him.  This has not happened to me before and was a bit scary. I learned from watching the nurse to rub his back vigorously to stimulate Jordon and remind him what he needs to do. Every time he had an episode I could feel my back tense up a little more- man I could sure use a massage- wink wink!  Jordon’s doctor increased the amount of caffeine from 6ml to 9ml to help reduce the episodes and hopefully this will help.  I feel like he has taken a step back and I’m a little worried about him. I know he’ll be OK and he’s in good hands, but I can’t help but to worry or be a little scared.


Jordon is getting 4ml of milk and weighs 2 pounds 12 ounces!!!


Tuesday, April 17, 2007


Jordon is not doing too well this morning, he has been having spells all morning. I get really emotional after being alone for a couple of days, so I left the hospital around 2PM and headed for Grand Rapids. I called later and Jordon is doing a little better, not having so many spells. He had blood work done to see if he is getting sick but that came back negative, he is just being a typical preemie baby.  Today Jordon weighs 2 pounds 11 ounces and is getting 4ml of milk and taking it well.


I had to pamper myself a little bit, so I got in touch with my friend Jodi and she colored and highlighted my hair.  She did an awesome job! Tim’s dad came over for dinner and we sat and talked for a while.  Once he left it was time for bed.


Monday, April 16, 2007


Jordon had a couple of spells last night but not enough to need the neopuff. He is doing well this morning and not making too much noise.  It seems that he needed a little more time to adjust to the new room, he may not be quite sure what is going on - it being so much more quiet.


I like the feel of the new room - it feels like home.  It is nice to be able to sit in his room, read a book, or even take a nap with privacy.  The nurse got Jordon out for me and we snuggled for 2 ½ hours. Jordon was on my chest lying on his tummy while we both drifted off to sleep. Each room has its own recliner and wow, is that a cozy chair!  Jordon did well out of the isolette, he did not drop in heart rate or respirations once while in my arms, he must know his mommy already.  Today Jordon weighs 2 pounds 11 ounces and is getting 2ml of milk.  We’ll see if he handles it ok.


Sunday, April 15, 2007


Today was the big move to Bronson’s new facility so Timmy and I got up really early to make the walk with him. Jordon did quite well considering all the noise that was being made. I checked on him through the gob of medical staff every so often to see how he was doing - he was kicking his little feet the whole way there. 


Jordon was not transported by ambulance - none of the babies were.  There is a tunnel that runs under the street connecting the two facilities. The walk from start to finish takes about 7 minutes.  They took one baby at a time, each having her own respiratory specialist, a couple of staff to carry her belongings, two people pushing the isolette, one pushing the neopuff, one pushing the CPAP vent, and a couple more people for other tasks.  We all barely fit in a full sized elevator that can usually fit a hospital bed. 


Jordon gets his own room!  Once we were all settled in, Timmy and I went to explore the building.  We found out that the hospital was serving a continental breakfast on the first floor. There was a NICU mother who was sitting by herself so I invited her to sit with us. She told us her name was Ashley and her baby would only be there for a couple of weeks.  He was not that early but he had surgery and needs to be observed for a while. I am excited to get to have a friend in the NICU.


Jordon had a lot of visitors today. Just as we were getting back from breakfast, Jordon’s Grandpa Masters came in. He wasn’t here long but he was able to spend a little time with Jordon.  Then, around noon we met up with Jordon’s Grandma and Grandpa VanDyke for lunch.  Jordon was a lot more aware of who was there because all the extra noise is cut down with separate rooms, and he nodded his head at them when they talked to him. Josh and Chrystal came to visit, too, while Grandma and Grandpa stayed in the waiting room with Tyler.  Josh hasn’t been here since Jordon was a couple of days old and he really enjoyed it when Jordon held onto his finger.


Jordon’s X-Ray looked good today, but still showed a little gas.  He also had a rough day once the noise simmered down.  His blood pressure was a little high and a few times his respiration and/or heart rate dropped due to the decrease in amount of oxygen he is taking in.  Once, they had to use the neopuff as a jump start.


Jordon’s nurse told me that Jordon weighed 2 pounds 9 ounces yesterday. Today he weighs 2 pounds 10 ounces.





Saturday, April 14, 2007 – End of week 3!!!!!!


Jordon gets caffeine to help him breath – it’s like big people taking steroids to help them get stronger, but the caffeine does not do any harm to preemies.  The amount was decreased this morning and he was having a hard time breathing which in turn made his heart rate drop.  This happened many times this morning and the doctor decided to give him the remainder of the caffeine to help stabilize him.  Jordon also had his feedings increased to 4 cc’s, but he was spitting up fluids, so an X-Ray was ordered to make sure there was not an obstruction in Jordon’s bowels.  His doctor told us that it appears that Jordon has a lot of gas so she is holding his feedings and the nurses will periodically suck some gas out of Jordon’s belly through his feeding tube.  Tomorrow Jordon will have another X-Ray to make sure things look better.


Jordon had a pacifier for the first time, but he did not know what to do with it, we will have to try another time when he’s not so tired.


Timmy and I went to dinner with Jim and Ellen, they are a great couple and very very good to us and we really appreciate everything they do for us.  Ellen calls me every other day or so to see how things are going, and I was able to tell her tonight that I am grateful for that as well.  They brought a couple of blankets from the church for us.  Jordon’s has a patch on it that says “You have been wrapped with God’s Love” and ours has our named embroidered on the corner.  This was very touching and made me cry a little bit.  After dinner, Jim and Ellen came to see Jordon.  Unfortunately, he is having a bad day and I think it may have intimidated them a little bit.  I would really like them to be able to place their hands on him and say a prayer.  I hope they can come and see him again later next week. 



Friday, April 13, 2007


Jordon is back on his feedings today but he is not getting as much milk as he was before.  He is now on 2 cc’s.


I got to hold Jordon again today.  I got to hold him for two hours this time! I asked his nurse to put him back because I was afraid he would get cold.  He was bundled so nicely that his temperature was at 100, so he got to lay in his isolette for a few minutes uncovered.  I guess I was wrong and he was OK.


Finally, Timmy is here, it has been a long week without him here. He brought a tag-a-long with him, Chrystal.  Chrystal is Tyler’s mom and my brother’s fiancé.  As soon as they got here we had dinner and went to the hospital to see Jordon.  It was great to see Chrystal again.  She even stayed the night.


It has been a long time coming but Timmy finally got to hold Jordon; it was an amazing sight to see the two most important boys in my life to be in one chair. Timmy was only able to hold him for about half an hour because Jordon’s nurse was having a hard time with the CPAP which was preventing Jordon from breathing fully.  I wish Timmy could have held Jordon longer and I wish it could have been a better experience, but Timmy enjoyed the time he had to hold his son!!!!



Thursday, April 12, 2007


Jordon has not made much noise since I have been here this morning.  This is a good thing because it means he is tolerating the rate and he is not having a decrease in heart rate or respirations. The only real noise he has made was during his care but I would be mad too if someone took the CPAP off, squirted some saline into one nostril and suctioned it out of the other, then replaced the tape and Velcro that hold the CPAP down and sticking the prongs back into my nose. I feel for him - good thing he won’t remember this when he’s older.  He has been this way lately - he just wants to be left alone. 


Later in the evening, the nurse checked blood gases and blood pressure and Jordon was crying harder than usual.  He was not happy with this nurse, she’s new and he’s not familiar with her.  I was able to calm him down by swaddling (placing one hand on his head and one on his torso or feet) but I really wanted to take him out of his isolette and hold him close to me, rock him back and forth and tell him everything will be okay.


Jordon’s doctor is still holding the feedings probably until tomorrow.  The doctor is not sure if Jordon is quite ready for them yet.  One more day won’t hurt anyway.  Jordon in the meantime is getting nutrients through his IV and still able to have bowel movements. 


I forgot to mention to Jordon’s weight the last couple of days. Tuesday and Wednesday Jordon was 2 pounds 7 ounces and today he is 2 pounds 8 ounces.  He even looks a little bigger to me, but he is still small.


My Grandma and Grandpa Murray came to visit as well as Pastor Bill from Wyoming Park United Methodist Church (WPUMC).  It was funny, Pastor Bill called and said that he was on his way (what a nice surprise) and Grandma and Grandpa were as well.  I called Grandma on her cell phone and asked if it was alright if Pastor Bill joined us for dinner and she was delighted.  Pastor Bill came to bring us a spaghetti dinner that we can have tomorrow and a rose that was placed on the alter last Sunday morning in honor of Jordon’s birth.  We visited with Jordon for a while and then headed to Applebee’s. I really enjoyed the company and the dinner…thanks Grandpa.


I got locked out of the apartment.  I thought the key was not working because it turned but did not unlock the door. I called the landlord and he had a hard time as well, only it was difficult for him to lock the door.  He figured that the screws holding the deadbolt onto the door were tightened too much and he also sprayed a little bit of WD-40 to make it easier to turn.  I felt a little stupid, but it was obvious that there was a problem - really I put as much pressure into unlocking the door as I thought I could with out breaking the key but it just would not unlock.  The landlord told me that it was not my fault and not to worry about calling him out to fix it.  Oh well.



Wednesday, April 11, 2007


Jordon was placed back on the CPAP with vent because he was having too many episodes where his respiration and heart rate would drop.  Sometimes preemies take one step forward and five steps back.  The last time Jordon was on CPAP with rate the machine was making 20 breaths per minute. Now the machine is making 40 breaths per minute.  If all goes well they will reduce the rate back to 20 breaths per minute. He did make me a little nervous when his heart rate dropped and his color changed, but it is getting easier to deal with - things like this happen.


His feedings were increased again today.  Now Jordon is getting 5cc of milk every three hours. However he is not digesting all of his food. The doctor decided to run a lab on his blood to make sure Jordon does not have an infection, which he doesn’t.  If Jordon’s belly continues to be so bloated and he still is having the problem tomorrow he will have an X-Ray done to make sure there is not anything wrong with his bowels. For now, Jordon’s feedings will be held for precautions.  Don’t worry though - he is still receiving nutrients through IV.


The weather outside is nasty; I had to brush at least 6 inches of snow off my car this morning.  My dad’s girlfriend, Linda came to see me, but didn’t realize the roads were so bad and made the trip down here to see us anyhow.  I really enjoyed her company; it gets a little lonely sometimes.  We had lunch together (on dad’s credit card), she visited with Jordon a little and then we went grocery shopping (on dad’s credit card).  I needed someone to tell me what to do, I knew I was not eating well and not drinking enough water, but Linda told me how it was and helped me get the right kind of food to make me the strongest I can be. Funny enough, I am already starting to feel better.  I really appreciate her concern and willingness to help me out - she is great!


Linda dropped me off at the hospital and headed back home.  I think it was easier for her to get home than it was for her to get here.  Kalamazoo is confusing with all the one way streets - anyone could get lost. 


I came back to my studio to get some dinner during shift change and made myself the best dinner since I have been here - thanks Dad!  I had to eat alone but that didn’t matter, the food was so tasty.  After dinner I took a shower and got ready for bed.  I need to start taking care of myself so I am staying home and hitting the sack early.  I did call Jordon’s nurse and the rate for the CPAP was reduced back down to 20 and he is doing well.  His feedings are still being held but he should get them back sometime tomorrow.



Tuesday April 10, 2007


I went to go see Dr. Lown today in Grand Rapids - he was the on-call doctor who delivered Jordon.  I was happy to tell him how grateful I was to have him there when we needed him.  He told me that if I would not have gone to the hospital when I did I would probably have had Jordon at home and chances are he would not be here with us today.  WOW - GOD IS GOOD!


The little break from reality really helped me - I will make sure that I get home at least one night a week for now on. I was undecided if I wanted to stay another night, but as soon as I started worrying about Jordon, I knew it would not stop until I could be with him.  So after dinner, Timmy helped me pack up that car and I headed out.  I had a hard time and missed Timmy immediately after I left, but the closer I got to K-Zoo the more excited I was to see Jordon. The sorrow I had leaving Timmy was quickly replaced with excitement – it’s weird how that happened.


As soon as I got into the nursery, Jordon’s nurse asked if I wanted to hold Jordon…. What an odd question… of course I want to hold Jordon!  Leaving Timmy was close to worth it after holding my beautiful boy.  He is doing very well tonight; the doctor took the vent (or the rate) away from the CPAP, now Jordon is doing all the exhaling on his own.  He is doing well on the straight CPAP so far, but if he happens to get tired the rate can be added in a matter of minutes without even touching Jordon.  I was unable to get Jordon’s weight tonight because I was holding him, but I will make sure I find out tomorrow.


Monday, April 9, 2007


I lost it today; all I could do was cry.  I want to be able to hold things together but it is just so hard considering my best friend (Timmy) lives in a different city. Because I was so not-together, I decided that I would leave for Grand Rapids tonight rather than tomorrow afternoon.  I miss my husband and I really needed to get away.  


Jordon was well for the short time I was there.  He did a lot better today than his mother.  I was only there for a couple of hours because my pity party made it difficult to be there. I called the nurse every couple of hours and he is still well.  Today Jordon weighs 2 pounds 5 ½ ounces.


I went to see my nephew, Tyler.  He missed me so much.  It was really healing to hold him, even though he held me.  He was so cuddly, and I loved it.  I didn’t realize how much I missed him until today, I normally would see him at least 3 times a week, and it has been a while since I had had my “Tyler fix.”  It was also good to be home.  I slept next to my husband and we cuddled almost all night. It was good to be together again.



WEEK 2   Photos


Easter Sunday, April 8, 2007




Ok, so today I’m going to pout.  It is not fair - most babies can breathe and eat and keep their heart rate consistent on their own.  It’s not fair - most babies get to learn their mother and father’s personalities, and how to play them.  It’s not fair, most mommies get to hold and bond with their babies at birth.  And most parents get to take their babies home with them and everywhere they go just to show off the newest addition to their family.  It’s not fair that I have to look through plastic to see my baby, and if I want to hold my baby all I can do is put my hand through a little hole, place one on his head and one on his belly.  If I want to comfort my baby all I can do is secure his little arms and talk to him gently.  I can’t pick him up and rock him back and forth and tell him everything will be OK.  I want to know my baby’s personality and deal with his orneriness when he needs to be fed.  I want to change his poopy diaper and smell it until his dad takes out the trash.  I want to do the things most moms do when their baby is at home with them.


I want to live with my husband, not in two separate cities.  I want to feel his skin every night and maybe cuddle now and then.  I want my baby next to me in a cute bassinet.  I want to get up in the middle of the night to feed him and gently tuck him back into bed.


I know all this will happen to us one day when Jordon is well enough to come home, but it’s not fun waiting for that time to come. 


All that aside, Jordon had a great day today; he had only a couple of spells with apnea.  He was able to see his Grandma and Grandpa VanDyke for a while and later his Grandpa Lotterman came to visit.  Jordon is doing so well on the CPAP (Day five) that his doctor thinks if he continues to do so well he will slowly eliminate the respirations the machine makes. This creates a continuous pressure and Jordon will do all the respiration on his own.  The nurses often say Jordon thinks he is bigger than he is.


Jordon is not using the Bili-Blanket right now, and he is no longer on the antibiotic.  Once again Jordon is gaining weight; tonight he weighed 2 pounds 7 ounces.  When he is on medication he does not get milk, he is given nutrition through an IV – that’s when he usually drops in weight.  When Jordon is given milk, he continuously gains weight.  This is another thing that is common with premature babies, their weight is so inconsistent.  I have not been too good at recording Jordon’s weight in my entries, but I will do my best to remember to do so.


All together, today was a nice, but cold, Easter day.  Jordon did not seem to mind the company and even opened his eyes for a second.  He did get angry, however, when the nurse was administering his care, but I calmed him down as he gripped my finger with BOTH hands.  It was so precious.  I know I did a lot of complaining in today’s entry, but I am truly blessed to have a healthy son, and happy that he is here with us today.



Saturday, April 7, 2007


Daddy and I did not spend a whole lot of time with Jordon. I think the stress got the both of us and we needed to go back to the hotel and sleep it off.  I took a four hour nap and somehow still feel sleepy.  I don’t know if I will ever feel rested.


Congratulations to Jordon - he has been on the CPAP for four days, the longest yet.  His blood gases look good and show no signs of stress.  I don’t want to get too far ahead of myself, but he is one step closer to breathing on his own.  I had a hard time seeing Jordon switched from the respirator to the CPAP and back and forth so much.  I know that the staff knows what they are doing, but I just wanted them to leave him alone, it was stressing me out.


I am becoming quite comfortable with Jordon’s nurses and think I already have my favorite.  They are all so kind and good with Jordon, and even provide a shoulder to cry on if my husband is not there with me.  I find the days are a lot harder to handle when Timmy is not there, I depend on him a lot for comfort and a hug when I need it.  Sometimes a voice over the phone is not enough and I beg him to come back.  However we are unable to see each other every night because we don’t have the money to put into the gas tank. 


I cleaned the studio today and got a lot of stuff situated, but I don’t think I’m quite happy with where I put things. As time permits I will play around and become accustomed to where something should be.  I’m not sure if one waste basket will be suitable, so when I’m in Grand Rapids Tuesday (to see the doctor) I will have to grab a small one out of the bedroom. Soon this will be the place I call home.



Friday, April 6, 2007


I paid the Landlord and got the keys to my new studio apartment today; I can start moving in tomorrow night.  It is just a cute little place - the bedroom is just big enough for a queen size bed, the bathroom is itty bitty with a tiny stand-up shower, and the kitchen/dining room is big enough for a kitchen table and maybe a chair or two. Even though it is small, it is still cozy; I can’t wait to get settled.


Jordon’s Grandma Masters, Uncle Eric, Lauren and Aunt Holly came to visit tonight.  I was reminded of why we’re supposed to allow visits by our parents only.  We don’t want to exclude our brothers and sisters from seeing Jordon, but even after almost two weeks, a visit from that many people was too much stimulation and his heart rate started to drop, and the added stress made Jordon stop trying as he usually does to breathe.  I felt so awful that we put Jordon through that, he really was pissed off, but I will make sure that doesn’t happen again. 


We appreciate everyone’s support, and understand that everyone wants to see Jordon, but he’s just not ready for all of the company.  I even stress Jordon out myself and I make myself leave the room - preemies are easily over-stimulated.  It may be hard to enforce but Tim and I decided for Jordon’s sake we will limit the amount of visitors to two per visit.  That means if Jordon’s Grandma and Grandpa bring Jordon’s aunts and uncles with them, only Grandma and Grandpa will be able to see Jordon. The aunts and uncles have to wait until Jordon is stronger.   It’s very, very hard for me to make that rule because I don’t want it to look like I’m targeting one person or one family - after all, we are all in this together, but Jordon is so easily stressed no matter who is visiting and does not have a voice, so we need to speak out for him.



Thursday, April 5, 2007


Tim had a delivery in Kalamazoo so he made a special trip to see Jordon.  I met up with him and we had lunch together.  I was not at the hospital much today because I was still tired from yesterday.  I would like to find a good book to read next to Jordon’s isolette so I don’t get so bored so quickly which leaves me feeling tired. Jordon does a lot of sleeping, which is normal for a preemie his age.  There are four groups of preemies, Micropreemies, Very-Very Premature, Very Premature, and Moderately Premature babies. Jordon falls into the Very-Very Premature group.

Micro Preemies are babies born less than 26 weeks gestational age, weighing about 1 pound 1 ½ ounces.  Very- Very Premature babies are born from 26-29 weeks gestational age, weighing 1 pound 8 ounces to 3 pounds 8 ounces.  Very Premature babies are born 30-35 weeks gestational age, weighing 2 pounds 3 ounces to 5 pounds 8 ounces.  And Moderately Premature babies are born 35-37 weeks gestational age, weighing 3 pounds 12 ounces to 7 pounds 8 ounces. 

Jordon is doing well today; he had a couple of spells where he stopped breathing, but his heart rate stayed real consistent.  To improve Jordon’s breathing the nurses used the Neopuff.  Basically the neopuff is an infant resuscitator, kick-starting the breathing.  It is common to have to use this device on a premature baby.  I did not get to hold Jordon today other than to pick him up to change his bedding. Daddy got a really good picture. 

We looked at the studio apartment late tonight and decided it was something I would be comfortable living in.  The neighbourhood seems really quiet and safe.  I will be renting one of the only units with a private entrance. The bedroom is separate from the kitchen and dinning room, and is just big enough for a queen size bed.  I can start to move in Saturday.

Jordon and I are happy that Daddy will be here with us for the weekend - we sure did miss him.  Even though he has been gone for a few days, Jordon still remembers his voice.  Tim told me that the first time he put his hands into Jordon’s isolette a monitor started alarming.  Sometimes a known touch can calm Jordon down too much to where he works less to breathe, then in response the alarm will go off to inform the nurse.  Rarely, Jordon needs to be stimulated when this happens, he usually improves within seconds on his own.

Once again I would like to thank everyone for the prayers and overwhelming support.  This process is made easier with people who care, like you!



Wednesday, April 4, 2007




Jordon’s doctor put him back on CPAP today, I was not too happy about that and asked him if it was really necessary.  He had such a hard time the other day and I thought Jordon needed a little more time to rest.  The doctor reassured me that Jordon’s blood gasses looked good and now was the best time to do the transfer.  He also does not want Jordon on the respirator for too long; it may cause long term problems.  Here is some information about breathing problems preemies may have.


I was exceptionally tired today. I thought I got enough sleep, but I guess I was wrong. This made me overreact when a family member called the staff phone in the nursery to see how Jordon was doing.  I was a little scared that something happened to Daddy because this relative was talking in a tone that made me suspicious.  Once it was understood that everything was OK with my husband, I told the relative that I would call him from the lobby. 


I just happened to sit in the right place at the right time.  There were a couple of women sitting across from me, not eavesdropping, but they couldn’t help overhear the conversation I had just taken part in.  One of the women, Jamie, told me she knew what I was going through for she had been through it herself with her twins about 21 months (I think she said) ago.  She was very reassuring and kind to me, she shared her stories and experiences, and we even discussed the way some of the nurses handled the babies. God put us both in that waiting room at the same time for a purpose.


During our chat, I mentioned to Jamie that I was from Grand Rapids and looking for a room to rent for the time remaining before I can take Jordon home with me.  It just so happens that her dad knows someone who owns rental property.   Upon calling the owner, they found that there was a studio apartment available. Tim and I will go look at it tomorrow.  It is amazing the mysterious way God works.  I really wish I would have asked Jamie for her phone number, she was amazing to talk to, and I think she could have been emotionally helpful.


I decided to go home earlier this evening than normal, so I could get a bite to eat and take a nap before the shift change is over.  I wasn’t sure if I was going back to the hospital because I was so tired.  But the loneliness got the best of me and before I knew it I was standing at the sink scrubbing next to Pastor Vernon, from Kalamazoo United Methodist Church (UMC). Pastor Vernon came to see how the baby was doing and as usual the same set of questions were asked… but this time I felt a warm presence with his concern.  I think Jordon felt it too, because as the pastor spoke, Jordon looked right up at him. 


As Pastor Vernon was leaving, he told me that the prayer group remembered our family, and each of the members in this circle will remember us each time they pray.  It is amazing the amount of prayers we are receiving, we are overwhelmed with support. There is also another couple from the church, Jim and Ellen, who is thinking of us.  Ellen calls me every couple of days to see how things are going, and to make sure we have everything we need.  She has also been working on finding a place for us to stay, and opened her home if we can’t find somewhere close to the hospital.  She is also a blessing and we are very appreciative for her support.  We’re even getting prayers from the congregation at Gun Lake Community Church – those are people we don’t even know!  My dad is their computer consultant and he mentioned our situation to someone in the office there and they put us in their bulletin! 


Now the good part…


Jordon’s evening nurse learned that I have never held Jordon in my arms.  She could not believe it, and as soon as she completed her care, she summoned help from another nurse, situated the wires and cords, and gently placed Jordon in my arms.


What a wonderful feeling! Immediately, Jordon looked into my eyes wiggled his way into a cozy position and drifted to sleep.  He knew he was in my arms and every few minutes he would open his eyes to see my face.  Although he can not see much (just a blur), he knows my voice and my scent.


All I could do is stare and thank God for this miracle in my arms.  If only I could take a picture of what I could see, I would show it to the world… Look at my Miracle Baby!!!!




Tuesday, April 3, 2007


I slept really well all the way until 11am - I needed that.  I decided that I will leave the hospital around 10pm from now on to insure that I am well rested for the next day. I can’t let myself get so tired, it makes it hard to function leaving me extremely emotional.  After all, Jordon needs me to be well for him.


I talked to Dr. Purdy today; he informed me that the blood culture was not exceptional so he placed Jordon on a round of antibiotics.  The infection was causing Jordon’s heart rate to drop too often.  He also decided that it was best to give him a little break and place him back on the respirator.  Since Jordon has been on meds and the respirator, he’s a lot happier, his heart rate is more consistent and he had only a couple of spells where he needed to be reminded to breath. 


Daddy got sent home from work early because he was having a hard time functioning.  It was his first day back on the job since Jordon was born and he is far away from his son and wife.  He is really holding himself together quite well for me - I guess that’s what he does best. He is a great husband and always there for me when I need him. He knows if he is strong for me I can be strong for Jordon.  I am very proud of Daddy - he is amazing.


I got to hold Jordon tonight, not outside of the isolette, but up off his bed so the nurse could change his bottom sheet.  I also got the opportunity to change a soiled diaper for the first time; I really need more practice at that.  I have changed plenty of diapers, but Jordon is just so little that it is much different. I had a crash course when Tyler, my nephew was born, but it could not prepare me for this.  This is something we will have to learn as we go, but we know that we are not alone.


Jordon looks so cozy tonight, I just want to crawl into the isolette with him and drift off to sleep. But being next to him is good enough; we are blessed to have him here with us.



Monday, April 2, 2007


Today was a busy day for Daddy and me; we did not get a good chance to spend quality time with Jordon.  We meet with our case worker to ask some questions about a few things.  A few minutes later we met with a social worker to go over the possibility of receiving SSI for Jordon. Not too much later, we had to leave Kalamazoo to bring Daddy home as he has to go to work tomorrow.  The day really made me tired and I should have come straight to the hotel and gone to bed, but instead I went to see Jordon.  I had a really hard time dealing with his condition, and a few times I actually had to walk out of the room to take a breather.


Jordon had been on the CPAP all day, but he is having a hard time keeping his heart rate normal.  He had a couple of spells right there in front of me where he needed to be stimulated to remind him the machine is not going to do all the work for him.  His respiration, however, was at a consistent rate, with only a few episodes where he needed to be reminded to breath. 


I still had a hard time tonight, mostly because I am tired and alone. Jordon and I are in Kalamazoo and Daddy is in Grand Rapids. All I really need is a hot shower and a good night sleep.  God, please watch over my baby.



Sunday, April 1, 2007


I called Jordon’s nurse first thing this morning.  She said that Jordon is doing well; he is kicking and moving around. She placed the phone into the isolette so I could say hello. According to the nurse, Jordon began to look around for me - how adorable!  When we went to see Jordon after church he was sleeping; I guess we just need to be there at the right time to see him so full of energy.


Jordon’s Grandpa Lotterman (Ken) came to church with us this morning at Kalamazoo First United Methodist.  We met a very nice couple after the service during the luncheon that the church was having for new members.  They seemed genuinely concerned.  I am looking forward to getting to know them better.  There was a HUGE sign on the bulletin board that encouraged the members to look for hospitality opportunities – this church seems to have the heart for it.  I think we’ll be relying very much on that in the next couple of months.     


The stress caught up with us today after Grandma and Grandpa VanDyke (My mom and step-dad) came to visit.  It sure did get the best of us; we had our first “fight” since before Jordon was born.  Daddy needed to be alone, so he dropped me off to Jordon and about an hour later Daddy showed up at the hospital refreshed and less stressed.  The stress seems to be never-ending; we sometimes need to take time to let it out.


The nurse put Jordon back on the CPAP and for the first time I heard his little cry; he is quiet but insistent. Sometimes I am a little nervous that he will forget to breathe, but if that happens the alarm will go off and the nurse will come and remind him to do so.  They are there for Jordon around the clock and reassuringly he is in good hands. If it gets to the point where he is tired, the respirator will replace the CPAP.  They change him from the respirator to the CPAP so often to teach him how to breathe - preemies need to be taught - they just can’t do it the way a full term infant can.




Photos HERE


Saturday, March 31, 2007


Pastor Bill from our church came to visit today, he was a little timid at first from all the equipment, but soon he was reaching his hand into Jordon’s isolette. When we arrived, there was a group of people around Jordon.  Everything was alright, but the staff was placing Jordon back on the respirator.  He did really well on the CPAP; he was using it for about 21 hours but was getting a little tired of breathing on his own.


Before Pastor Bill left, all three of us reached our hands inside the bassinette, placed them on Jordon, and Pastor Bill said a very touching prayer.  It is amazing the grace we receive from the church and from God when we don’t deserve it.  God is definitely on our side.


Jordon sure did have a busy day and was all tuckered out by the time we went to see him this evening.  Late afternoon an IV was placed into Jordon’s heel and run almost to his heart. This was done so the line could be taken out of his belly button.  Because of this, later this week we may be able to hold Jordon for the first time.  Then tonight the nurse decided that the respirator tube needed to be changed, which made me a little upset because they just put Jordon back on the device.  However, I have to keep reminding myself that the staff knows what they are doing, and everything will be alright.  By the time they were done messing with him, I was able to calm him down for the first time.  The nurses were impressed the way he reacted to my touch and I was happy to be able to make a difference in his attitude; he was shortly off to sleep.


Good news, Jordon can have my breast milk now! All I had to do was have blood drawn to test for HIV. I told the nurse that was not necessary, but they have to run the test just to make sure.  I find that a little strange, a mother does not have to be tested before they nurse when they deliver at term, but you never know.  To see Jordon being fed with my milk, it made all the pumping sessions worth it.  Jordon was unable to be fed when he was on IBProvin, so it seemed like all the pumping I was doing was not worth my time. 


All and all, today was eventful for Jordon, but he is still fighting and I am very proud of him. He gets that from both his father and me - we are both really stubborn.


Friday, March 30, 2007

Jordon was taken off the respirator and put on CPAP today around 3pm, restless for a few minutes, but sleeping soundly after no time.  He is doing better this time off the respirator; it is almost midnight and he has not been put back on yet.

We called the hospital a couple of hours after we left to check on Jordon, the nurse told us that he is sleeping with his arm above his head - just like his mommy. 

I love his little hands and feet, the way he turns my way when I speak to him, the way he looks like his daddy (only Jordon has more hair), the way he makes me feel like there is no one else in the world, and most of all the way he is truly a gift from God.


Thursday, March 29, 2007

Jordon is doing well and trying to breathe on his own.  However at 2 pounds, he is unable to do so.  He is on an antibiotic for to help get rid of the heart murmur he has.  He is not been fed through the stomach yet, but he is receiving nutrients through his belly button.

I was happy to finally see my baby after an awful 3 days apart.  Today I was able to take his temperature and change his diaper.  He recognizes my voice and even opens his eyes when he hears me.

Doctors are very optimistic about Jordon, and all the nurses love him.  We are still in need of prayers and are very thankful for the support we have already received.

My husband Timmy is a saint.  He is holding together wonderfully. 


Tuesday, March 27, 2007 – My first journal entry

I was feeling some cramps Sunday Morning when I got out of bed, which did not feel unusual, since the baby moved around a lot.  I hopped into the shower to see if that would ease the pain, but it only got worse.  After breakfast my back started to hurt and it was hard to sit up straight or to even stand.  After speaking to the on-call doctor, Tim and I went to the ER to make sure everything was alright. 

When we got there the nurses ran tests to make sure I did not have kidney stones....nope that was not the problem.  Later when the hospital OB arrived and performed an ultrasound, she discovered that I was dilated to 6cm...WOW.  After a vaginal exam, the doctor decided that I needed to be transferred to Spectrum, where the NICU can take care of the baby.  However they ran out of time and needed to perform an emergency C-Section at Metro Health because the baby was breach and on his way out.

Jordon was born at 4:39 on March 25, 2007.  We were able to see him for a few minutes before he was transferred to Bronson in Kalamazoo.  He remains there and is in good condition.  Currently he is on a ventilator to help him breath, and being fed through a tube with donated breast milk since mine has not come in yet. 

 He already knows his father's voice and turns towards it when he hears it.  I can't wait to see his little hands and feet, and let him know how much I love him. 

 I will do my best to keep this journal up to date.  Please continue to pray for us, and thank you for your support.