Nicholas’ Survival Story

January 13th, 2013 by Liz

Our story starts like many other stories on here. I was induced early because of high blood pressure and high urine protein. I was due the end of July and had Nicholas June 6. We have three other kids and our other little boy was also taken early due to the same reasons. He has severe lung problems, horrible allergies but his bowels never gave us problems. We got the horrible call when he was 5 days old that he had to be airlifted to a bigger hospital because he had to have surgery right away because his intestines had a “stroke”. Nicholas even that early was born weighing 5 pounds 7 ounces ( I make big babies ! ) He had size on his side. He had 50 % of his small and 30% of his large intestines removed. He had an ileostomy and a colostomy. He was the biggest baby in the NICU you and after the initial weeks of NPO he just laid there and grew and ate. Physically besides the bags attached to his tummy and the scars he was fine. It killed me to leave him everyday to go home (92 miles away) but we have three other kids and my husband couldn’t miss work. We had an awesome support network of family and friends who would take turns sitting with Nicholas or the other kids. When Nicholas got reconnected at three months it didn’t go well. He lost a lot of blood and after was in so much pain. They had to keep putting him on life support so they could crank up his pain meds more because he was miserable. As soon as he was heeled up from his second surgery I wanted to take him home but he was addicted to the methadone. That took awhile to ween him off of too. There was nothing else wrong with him for him to stay in the NICU. They had no methadone clinics close to home.

When we brought him home he was still a little addicted to the methadone. He cried certain times of the day for what seemed like an hour. He still wakes up at night, even though he is four, at the same time his methadone treatments were. I can’t explain it and no one else can either. His legs hurt a lot too and his feet. I think sometimes that wakes him up too. I’m very grateful he is healthy and happy, but I miss sleeping. lol They tell me it’s because he’s spoiled but it doesn’t matter he deserves it. For the first year of his life we did everything we could to keep him from pooping so much. He was on an amino acid based formula called NEOCATE. It was a life saver ( truly ) !!!!! We put green beans in his bottles, because they are a binding agent, along with cereal and anything else we could think of to stop him up. I had him completely potty trained by three. Besides being anemic and some bouts with pneumonia ( in and out of the hospital more!!! ) and an extreme lactose intolerance he was healthy!!! Then October of last year (2011) Nicholas got constipated for the first time EVER! I have no idea why or how but he didn’t go for days. I flipped out a little and we were in and out of xray over and over to make sure nothing had come apart in his intestines. It all looked good except the huge blockage that was past the point of his re-section. It resulted in a few enemas and many painful hours on the toilet. Nicholas is now no longer BM potty trained. I’ve tried for the past year to redo it but it always fails. He is very afraid to use the toilet for BM purposes and holds it in for days. I had to eventually go back to pull ups and tell him I’d rather he go in his pull-up than not at all. He pees on the potty like a champ though. I can’t find other parents who have NEC survivors who have gone through this and the doctors just keep taking his blood to check vitamin levels and try to send us to potty training classes. He never poops his pants at preschool and I don’t imagine he will in Kindergarten either. I just wish someone will help me figure out what to do. I’ve tried it all, I think. I know on a page with so many babies stories who didn’t survive NEC I shouldn’t be complaining about my little boy who won’t poop on the potty but there is seriously no other websites I can find where parents of kids with NEC talk.

PS I found out this year my high blood pressure (since 18) and my high levels of protein in my urine are due to a rare kidney disease and had nothing to do with my pregnancies. I wish I had known 🙁

One response to “Nicholas’ Survival Story”

  1. Mustafa Hussain says:

    Hi Liz, My name is Mustafa Hussain. I am 21 year olds and I had NEC when I was prematurely born.

    I read your story and the one Similarity I can relate to between your son and I is the potty training. O I remember the days of bathroom horrors. In my case, very small portions of my small intestine were removed and then the healthy parts resealed.

    The result as a baby to age 5-10 years old, I had to go #2 at least 5-7 times a day. The form is diarrhea like — fast and almost liquid-like.

    Took me years to be potty trained for #1 and #2, finally by I think 5th grade. For some reason couldn’t learn it.

    Worst part: the inability to control bowl movements because of the speed at which I had to go to the bathroom.

    As I grew older, I started to get a sense of how much eating = going to the bathroom within 30 minutes of eating.. and I got a sense of what foods made me go faster.

    This is my story, or bits and pieces.. not sure it will provide you the solution to your problems, but I am sure in due time, your son will understand his body himself and control it from there.

    1 option: I used to be TERRIFIED of the onset of #2 because of the so many misses I had .. at home and in public… that I hated toilets. What helped me as a baby [ or what my parents let me do] was keep the bathroom open and my parents nearby in my sight as I went. [ at least for #1 ]. It comforts the mind that they are not Stuck on a toilet with no support or help forever.

    [ P.S. to this day, slightly scared of toilets [ proper word would be cautious]… always have a habit of testing the flush in a foreign toilet before I go [ fear of clogs ]

    good luck

    Best

    Mustafa

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