Born at 4:39PM on
March 25, 2007 in
My name is
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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
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
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.
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
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.
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
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
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.
found out that Jordon was approved to start a preschool next
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
browsing the internet and found a March for Dimes site that showed that there
is a march taking place in
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 http://www.marchforbabies.org/default.aspx?si=&u= . 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.
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
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
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!!!
team of Occupational and Physical Therapists made a visit. They played with
the OT and PT was a social worker, she made sure that
November 9, 2007 – 11 Pounds
that it has been so long since the last journal entry –
Grandpa Lotterman tried to pick the cutest photos, but they were ALL cute, so they’re all here!
check the website, don’t be discouraged to see no news, be encouraged as in
this case, no news is good news!
Thursday, September 6, 2007 – 8 pounds + 8 ounces
not much to report this evening other than the fact that
It was a
big day for
Sunday, September 2, 2007 – 9 pounds + 5 ounces
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
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
are going a bit better today for
Saturday, August 25, 2007 - 9 pounds - Five Months old
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.
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
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
August 14, 2007 - 9 pounds + 8 ounces
doctor appointments yesterday went well. We started with a “Well Child” where
appointment for the day was with
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
surgery is still scheduled for the 20th of this month; please keep
August 12, 2007 – 9 lb 5 oz
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.
waited two hours for the test results,
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
August 9, 2007
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
another day in the emergency room. This
time it was not for a life threatening condition but for a leakage in
button is intact,
Friday July 27, 2007
I was able to bring
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.
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
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
FOUR MONTHS OLD
8 pounds + 4 ounces
be a little hard for me to write tonight. Unfortunately,
started Monday night/Tuesday morning at 3 am, when
going to stay at the hospital and take care of the baby but my Dad and
Wednesday, July 25, 2007
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
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.
eye on this web page for details or subscribe to updates by sending an email to
with the subject “
Sunday July 22, 2007. JORDON’S HOME!!!
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.
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
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.
came to visit tonight and then
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
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
I got to the hospital around 7:15 this evening.
Monday July 17, 2007
7 pounds + 12 ounces
found out today that we will be bringing
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.
*very* excited to be bringing
Saturday, July 14, 2007 - 15 weeks + 6 days
been an extraordinary day for
to the hematologist today and she informed me that
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.
dinner, Angela and Chrystal came up to the hospital to see JoJo.
I had a very good day.
Thursday July 12, 2007
15 weeks + 4 days, 7 pounds + 10 ounces
8:15 AM –
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!
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
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
July 11, 2007 (Entry by Ken Lotterman)
(Thursday) is Kendra’s birthday. One
unexpected gift is that she gets to try giving
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.
of my infant son –
Thanks again for being so supportive – I could not do it without you!!!
July 6, 2007 (Entry by Ken Lotterman)
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
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.
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
Kendra is making plans for
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
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
(Ken Lotterman writes) Thursday morning, June 28, 2007
Tuesday, June 26, 2007 – Three calendar months plus one day
***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.
it’s difficult to know exactly what is going on with
Thursday, June 21, 2007 – 12 weeks + 4 days – 6 pounds +7 ounces
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.
and Rhett came to see
Tuesday, June 19, 2007 - 12 weeks + 2 days, 6 pounds + 5 ounces
I got to
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.
Wednesday, June 13, 2007 Eleven weeks + four days, 6 pounds + 6 ½ ounces
We had a
Sunday, June 10 and
Eleven weeks and two days
6 pounds + 2 ounces
emotionally drained and simply did not have the strength to report
with the doctor on Wednesday to discuss the care plan for the next month –
hopefully he can estimate how much longer
Saturday, June 9, 2007 – Eleven weeks, 6 pounds + 1.4 ounces
at the hospital this morning before Tim and I went to a couple of graduation
open houses and
Friday, June 8, 2007 – Ten weeks + 6 days, 6 pounds + 2 ounces
doctor decided that it was time to get
Thursday, June 7, 2007 – Ten weeks + 5 days, 6 pounds
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
Tuesday, June 5, 2007 – Ten weeks + 3 days, 6 pounds even!!
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
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.
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.
and Ray came to see
Friday, June 1, 2007 - 9 weeks + 6 days, 5 pounds + 13 ounces
got to hold
Thursday, May 31, 2007 – 9 weeks + 5 days, 5 pounds + 11 ounces
the day off to do “power pumping”, so I did not see
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
I struggle with not being with
Wednesday, May 30, 2007 – 9 weeks + 4 days, 5 pounds + 9.8 ounces
X-ray showed that the air around
starting to learn
Today was a great day. It was awesome to see him so happy and calm!!!
to the May 28 entry:
Tuesday, May 29, 2007 – 9 weeks + 3 days, 5 pounds + 7 ½ ounces
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
feel a difference when I returned to
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.
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.
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
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
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
Parent to Parent Partnership came to visit on just the perfect day. I am having a hard time this week, especially
Thursday, May 24, 2007 – 8 weeks + 5 days, 5 pounds + 4.6 ounces
going to see
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
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
Tuesday, May 22, 2007 – 8 weeks + 3 days, 5 pounds + 6 ounces
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
Monday, May 21, 2007 – 8 weeks + 2 days, 5 pounds + 4 ounces
Not a lot
happened today again.
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.
did get away, I went to see my nephew Tyler.
I used to see him about every other day, but now that
Sunday, May 20, 2007 – 8 weeks + 1 day, 5 pounds + 3.4 ounces
*** PHOTOS - Click HERE ***
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
I met my
Mom and Ray at the hospital. They were
there to see
whole lot changed with
Saturday, May 19, 2007 - 8 weeks, 5 pounds + 1.4 ounces
happened today. I went to the hospital
Friday, May 18, 2007 - 7 weeks + 6 days, 5 pounds +1 ounce
Chrystal showed up as I was getting ready to leave for the day. Chrystal was happy to be able to hold
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.
“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
Thursday, May 17, 2007 - 7 weeks + 5 days, 5 pounds + 1 ounce
doctors are also thinking about doing another study on the intestines. This time the barium would be given to
Grandma Kramer and my Mother came to see
Wednesday, May 16, 2007 – 7 weeks + 4 days, 5 pounds + 3 ounces
to the doctor and received a GREAT report.
I had an
especially hard time leaving after my nightly visit.
Tuesday, May 15, 2007 – 7 weeks + 3 days, 5 pounds + 1.6 ounces
a great day. I got to the hospital
around noon and
still receiving the erythromycin for his bowels but has not had a stool in
three days. The doctor will not keep
Monday, May 14, 2007 – 7 weeks + 2 days, 4 pounds + 12.5 ounces
Not a lot
happened today. A plastic surgeon looked
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.
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
doctors are not too worried about the hemangioma on
Saturday, May 12, 2007 (seven weeks old today)
ordered to wean
Ron, Aunt Lori and cousin Melanie came to meet
I got a
call from my friend
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.
Friday, May 11, 2007
I got to
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
Not a lot
going on today.
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
Wednesday, May 9, 2007
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
telling people that they can call me to come up and see
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.
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,
Monday, May 7, 2007
Tim and I
had a conference today with
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
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!
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
Mom and I
went to see
Friday, May 4, 2007
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
home for dinner and went shopping with
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!!!!
up to the back side of
able to hold
Wednesday, May 2, 2007
Today was really uneventful so I don’t have much to write.
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.
I should clarify something: When I state the amount of milk
Monday, April 30, 2007
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
I did not
make it up to the hospital to see
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.
WEEK 5 Photos
Saturday, April 28, 2007
here is great - THE DOCTOR called me this morning to let me know
Mom and I
did a little shopping - it was nice to know that I was home and
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
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
was a breeze for
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,
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
It was decided that it would be best to limit visitors for the
next few days while
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.
came down this morning. I was Kangaroo
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.
Wednesday, April 25, 2007
Tuesday, April 25, 2007
able to hold
Just as I
was getting ready to leave the hospital for Grand Rapids I had a surprise visit
I am at
home for the night and missing
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.
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.
Sunday, April 22, 2007 – 4 weeks old today!
a lot easier to handle than yesterday.
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.
Saturday, April 21, 2007
stopped to remind myself that things aren’t that easy and that
Tim and I
just stood there watching the respiratory specialists work on our baby.
became aware tonight of
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
Friday, April 20, 2007
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!!!!
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
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
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.
I can’t believe
I slept until noon and I have a lot to get done before I can make it back to
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
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.
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
Sunday, April 15, 2007
the big move to Bronson’s new facility so Timmy and I got up really early to
make the walk with him.
Saturday, April 14, 2007 – End of week 3!!!!!!
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.
I got to
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
been a long time coming but Timmy finally got to hold
Thursday, April 12, 2007
the evening, the nurse checked blood gases and blood pressure and
to mention to
Grandma and Grandpa Murray came to visit as well as Pastor
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.
feedings were increased again today. Now
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
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.
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
I went to
go see Dr. Lown today in Grand Rapids - he was the
on-call doctor who delivered
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
as I got into the nursery,
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.
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
IT’S NOT FAIR
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.
all this will happen to us one day when
together, today was a nice, but cold, Easter day.
I did not spend a whole lot of time with
becoming quite comfortable with
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.
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.
appreciate everyone’s support, and understand that everyone wants to see
Tim had a
delivery in Kalamazoo so he made a special trip to see
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.
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.
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
I FINALLY GOT TO HOLD MY BABY!!!!!!
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
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.
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
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
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…
wonderful feeling! Immediately,
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!!!!
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,
to Dr. Purdy today; he informed me that the blood culture was not exceptional
so he placed
sent home from work early because he was having a hard time functioning. It was his first day back on the job since
I got to
a busy day for Daddy and me; we did not get a good chance to spend quality time
had a hard time tonight, mostly because I am tired and alone.
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
all, today was eventful for
Friday, March 30, 2007
We called the
hospital a couple of hours after we left to check on
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
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.
very optimistic about
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.
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.