When John was born he was 5 lbs 1 oz not bad for a baby born at 35 weeks but since he wasn't able to eat on his own he lost weight very fast. When he was discharged from the hospital 2 days later he weight 4 lbs 3 oz which was a big weight difference. After spending 4 weeks in the PICU at another hospital he went home weighing 5. 6 lbs. His weight gain was very slow almost none in the following months. When we arrived at Loma Linda University Childrens Hospital in January 2010 John was 5 months old and weighed 6.1 lbs. Two days after being admitted into the hospital they placed a feeding tube through his nose, finally he began gaining weight slowly. He was discharged 2 months later weighing 8.3lbs. Everything went great afterwards, he started gaining weight and his health problems subsided.
When John was 14 months his pediatrician decided that it was time to increase the calories he was taking and increased to 30 calories from 22. This is when our new troubles began. He did just fine for about 2 weeks and then the vomitting began. He wasn't tolerating milk no matter how much we fed him. I tried feeding him small amounts at a time over a long period and that made no difference. I took him back to his pediatrician and she switched his milk to Pediasure. He did great on it for the first week and then again the same thing happened. After him nearly choking during one of his feeding I took him to the Emergency room at Loma Linda. There they admitted him into the hospital to begin testing. They stopped his feedings and put in a PICC line to start feeding him through an IV. They gave us 2 options 1 was to change his G Tube to a J tube and the second was for a surgery to tie his stomach around his esophaugus to prevent anything from going back up. My husband and I decided to hold off on any surgery and good thing we did. They sent him home after 2 weeks in the hospital with a different type of milk, this one was partially digested to make it easier for him to digest. He did great on it, for the first week and then again the same thing happened.
I stopped feeding him milk to let his stomach calm down and started him on clear liquids which he tolerated just fine. After 2 days I started him back on Pediasure but I decided to do something different. I was dilluting his milk with rice water. For every 8 oz of milk I would add 2 oz of rice water, I never expected this to work but I was desperate to find a solution. This was the solution to his feeding problems. So the solution to the long battle with milk has finally came to an end, at least for now. He lost 12 lbs during this battle with finding an answer to his milk. Right now he is slowly gaining the weight back but is more active than ever.
John's 1st 4th of July
Showing posts with label cri du chat. Show all posts
Showing posts with label cri du chat. Show all posts
Thursday, January 6, 2011
John Anthony's story
It was a rainy Wednesday afternoon in Germany when our son was born on August 12, 2009. Weighing only 5 lbs 1 oz he was rather small but he was born at 35 weeks so it was a normal weight. As son as he was born we knew that something wasn't quite right, he was missing his right ear. When I finally got to hold him, they told me to feed him and that's when we continued to notices abnormalities. He wasn't able to eat much and upon closer examination we noticed that he had a sking tag and a wide nasal bridge. 2 days later he was discharged to go home but instead my husband and I took him to a bigger hospital. As son as we got there they assesed him and admitted him into PICU where he spent the next 4 weeks. While there they did genetic testing and Cri Du Chat syndrome was his diagnostic. He didn't have the normal high pitched cat like cry but he had many other characteristics. That day our world seemed to come down on us. Knowing nothing about this syndrome and being in a foreign country with no family and not knowing the language, things didn't seem as if they could get any worse, or at least that's what we thought.
The time finally came to bring John home with us. He went home with a feeding tube in his nose and a suctioning machine. Everything seemed to be going ok until he missed his first milestone and then his second. After doing online research I found that our military community offered early intervention programs for children with special needs. It took a few phone calls and our son soon started receiving help. In Novemeber 2009 my husband and I became sick with bronchitis. With both of us sick it was only a matter of days before our son would be sick too. Mid Novemeber he got bronchitis and after taking him to the hospital all that they gave him were saline drops that we had to put down his nose, which we did. Little did we know that our son asperated and the saline drops would worsen the bronchitis. By the time Monday morning came our son was barely active and not doing anything at all. We rushed him to the health clinic on post where they started him on steroids and oxygen while they let the German Hospital know that we would be on our way. Our son spent his first Thanksgiving in the Klinikum (German Hospital) and after 2 1/2 weeks he finally went home. This is when our world finished turning upside down.
When we took our son to his follow up appointment the next day, we were told that the only way to keep our son alive would be if my son and I returned to the US while my husband remained overseas. We had no choice and we were on the first plane home. We spent Christmas and New Years at home btu come January the bronchitis would come back to haunt us. Since the bronchitis was never taken care of it turned into Pneumonia. Our son was transferred to a hospital about 45 minutes away from my home. He spent the next 8 weeks in the PICU.
When we arrived at Loma Linda University Children's Hospital the medical staff were in disbelief that their 5 month old patient wasn't even 6 lbs. He was put on oxygen and started on IV and antibiotics, the following afternoon our soon experience respiratory distress and was put on a higher care unit and a higher amount of oxygen. Here they diagnosed him with aspiration pneumonia (liquid would go into his lungs rather than his esophaugous) laryngomalacia which was causing him trouble breathing along with many other medical issues. He was taken to the operating room to perform a surgery to try and correct the laryngomalacia but this surgery failed and he was put on a ventilator. The next attempt failed and our son came back with a tracheostomy. Son after a mickey button was also placed to feed him through. Finally after 8 long and emotional weeks I brought my son home.
My son now needed 24 hour care since he was quite an active baby and would try endlessly to pull out his trach and feeding tube. I was never ready for what lay ahead. With my husband in the military serving overseas I was left to be a single mother like all military wives, the only difference was the extent of care our son required. I would sleep about 3 hours at the most a day, I would spend all night awake since John has his schedule confused. I was left to care for an infant with a syndrome I knew nothing about, to learn to use machines I never knew existed, to learn to be able to function with little to no sleep and to give all of my love and attention to my son.
No matter how many challenges, sleepless nights John is the most amazing thing that has happened to me and I could never imagine having a more perfect son. Although to some people he might not be normal to me he is everything a mother could ask for. He is such a sweet and loving baby, always laughing and smiling. Don't get me wrong he has HUGE personality and is quite a character but he is truly amazing.
The time finally came to bring John home with us. He went home with a feeding tube in his nose and a suctioning machine. Everything seemed to be going ok until he missed his first milestone and then his second. After doing online research I found that our military community offered early intervention programs for children with special needs. It took a few phone calls and our son soon started receiving help. In Novemeber 2009 my husband and I became sick with bronchitis. With both of us sick it was only a matter of days before our son would be sick too. Mid Novemeber he got bronchitis and after taking him to the hospital all that they gave him were saline drops that we had to put down his nose, which we did. Little did we know that our son asperated and the saline drops would worsen the bronchitis. By the time Monday morning came our son was barely active and not doing anything at all. We rushed him to the health clinic on post where they started him on steroids and oxygen while they let the German Hospital know that we would be on our way. Our son spent his first Thanksgiving in the Klinikum (German Hospital) and after 2 1/2 weeks he finally went home. This is when our world finished turning upside down.
When we took our son to his follow up appointment the next day, we were told that the only way to keep our son alive would be if my son and I returned to the US while my husband remained overseas. We had no choice and we were on the first plane home. We spent Christmas and New Years at home btu come January the bronchitis would come back to haunt us. Since the bronchitis was never taken care of it turned into Pneumonia. Our son was transferred to a hospital about 45 minutes away from my home. He spent the next 8 weeks in the PICU.
When we arrived at Loma Linda University Children's Hospital the medical staff were in disbelief that their 5 month old patient wasn't even 6 lbs. He was put on oxygen and started on IV and antibiotics, the following afternoon our soon experience respiratory distress and was put on a higher care unit and a higher amount of oxygen. Here they diagnosed him with aspiration pneumonia (liquid would go into his lungs rather than his esophaugous) laryngomalacia which was causing him trouble breathing along with many other medical issues. He was taken to the operating room to perform a surgery to try and correct the laryngomalacia but this surgery failed and he was put on a ventilator. The next attempt failed and our son came back with a tracheostomy. Son after a mickey button was also placed to feed him through. Finally after 8 long and emotional weeks I brought my son home.
My son now needed 24 hour care since he was quite an active baby and would try endlessly to pull out his trach and feeding tube. I was never ready for what lay ahead. With my husband in the military serving overseas I was left to be a single mother like all military wives, the only difference was the extent of care our son required. I would sleep about 3 hours at the most a day, I would spend all night awake since John has his schedule confused. I was left to care for an infant with a syndrome I knew nothing about, to learn to use machines I never knew existed, to learn to be able to function with little to no sleep and to give all of my love and attention to my son.
No matter how many challenges, sleepless nights John is the most amazing thing that has happened to me and I could never imagine having a more perfect son. Although to some people he might not be normal to me he is everything a mother could ask for. He is such a sweet and loving baby, always laughing and smiling. Don't get me wrong he has HUGE personality and is quite a character but he is truly amazing.
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