Archive for January, 2013

Baby Riley’s Survival Story

January 24th, 2013 by Lindsey Souza

I find it incredibly difficult to write the story of my child’s life, but I will do my best.

At 28 weeks, I had a partial placental abruption, which put me into preterm labor, and was put on bed rest (some at the hospital, some at home). I had gestational diabetes that had roared out of control as well. It was decided that IF I could make it, they would deliver my son at 37 weeks exactly. The labor stopped and I made it to 37 weeks.

On October 1, 2008, my son Riley entered the world by c-section,weighing 6lbs 9oz, and considered full term. He was put in the NICU for transient tachypnea of the newborn (breathing too fast),which was expected to resolve quickly. On October 4, at 4am, his doctor appeared in the doorway to my room and told me I needed to get down to the NICU right away. My husband and I rushed down there, where we were told that Riley had developed NEC and e-coli sepsis and that he would be life flight to Duke University Medical Center shortly. He was now incubated.

Once at Duke, he became extremely critical, so much so that surgeons could not even attempt to operate on him, until October 10. At that point, he had become sick, it was a “operate and he may die, don’t operate and he WILL die” situation. During this surgery, he was given a j-juenostomy , for the next 6 weeks. The surgeon said his entire small and large intestine looked sick and he didn’t want to risk removing some that may possibly heal. He was on total tpn/lipids for this time. He contracted sepsis again during this waiting period and was critical off and on.

His next surgery, in November of 2008, reconnected his j-juenostomy,and left him with an ileostomy, and the loss of a great deal of his small intestine and his entire right colon, including his appendix and ileocecal valve. It was decided to let him feed and grow (and hopefully go home) with this ileostomy and operate again when he was bigger/healthier. Two weeks after this surgery, his belly blew up like a balloon and eventually erupted out of his incision line…he had developed a fistula, and all we could do was wait and hope he could ride out the resulting infection. He did and finally, on January 15, 2009, after 107 days, he went home with us.

We returned to Duke in September 2009 to reconnect his ileostomy. The surgeon could find no evidence of the fistula ! He reconnected him, and things looked great. The day we were scheduled to go home, the surgeon decided to do a CT scan on his belly, just to be precautious, as my son had run a low grade fever since his surgery 2 weeks prior. The CT scan showed that the connection made to reconnect his ileostomy had leaked, and he was pouring a small amount of stool into his abdominal cavity. Off they took him to an emergency surgery, where he ended up with an ileostomy again.

In February of 2010, we returned AGAIN to Duke, to attempt ileostomy reconnection. His surgery was on February 10, and he was discharged HOME on February 14 fully reconnected.

We almost lost him so many times and he was so sick, and didn’t fit the “typical” NEC baby case scenario since he was born full term, and being full term with NEC is actually a worse case scenario. But now, he is now a healthy, happy 4 year old with a very scarred up belly. He is medically considered short-gut, but has very few intolerances, most of them being sweets. Because of the loss of the entire right colon, he rides a fine line between diarrhea and constipation, and takes miralax powder daily to regulate him. He started playing T-ball this past fall, and if you didn’t know him and his history, you would never guess he had such a rough go at life his first 15 months!

Mustafa, a Survivor shares her story

January 24th, 2013 by Mustafa Hussain

Hi, my name is Mustafa. I am a 21 year old and I was born prematurely and had NEC surgery. My story is not as exciting i guess as may some other people’s, but its epic for my mother who had to go through with the before and after. I was searching sites to see other survivors of NEC. I am curious to see if they have similar post-surgical side effects of NEC, for example small bowel syndrome or diarrhea like bowels on a normal basis.

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 🙁