Background On Delaney

Yesterday was a very LONG day. I felt like it was going to go on forever. I have had very little sleep in the last few days. I wish I wasn't so tired. Delaney has been doing okay in the last 24 hours. As quickly as Laney's fever went up, it went right back to normal again. Seems to be that her bowels are not working without intervention anymore though. I've not really posted alot in the past about Laney's tummy troubles. Mainly because I'm sure no one really wants to read about poop. I'll try to make this as little about poop as possible, while explaining some of Laney's tummy issues to the best of my ability.

When I was pregnant with Delaney, I had several health issues. Mainly, I was on bedrest for pregnancy-induced hypertension. My hormone levels were crazy all through my pregnancy with her also. For the first 13 weeks I went to have blood work regularly because one day my levels would be up and the next time they would be really low. My OB was hesitant to believe that I was going to be able to carry her. She was certain I was going to miscarry at any time. When Delaney was born earlier than expected, we were thrilled to have the new little girl we had prayed for all those weeks. She was and is a beautiful little girl. I remember thinking when I first saw her, what a beautiful dark skin tone she had. She looked like she had a perfect summer tan! However, at certain moments she looked orange. I asked the nurses to re-check her billirubin because I knew that her skin tone could be caused be jaundice. They assured me that she was not jaundiced and told me to relax and enjoy my baby. She was a tiny little thing and was having trouble with her feeds, so I knew it would be awhile before we could bring her home, but I was so relieved that she seemed to be as healthy as they were claiming her to be. For the first few days I delighted in spending as much time as possible with her. I loved everything about taking care of her, right down to diaper changes. It was in a conversation with her nurse that I started to second-guess the assumption that all was normal with Delaney. I told the nurse how funny I thought it was that Delaney always waited to poop until I was not around to change her diaper. I joked that when we got her home I was planning to bring her back to the hospital everytime she needed a dirty diaper changed because a momma could get use to not having to do the "dirty diaper detail." The nurse looked confused. She checked Laney's chart and realized that none of the nurses had ever made any notes about dirty diapers. They must have assumed that I was changing dirty diapers. It was then that we realized that Delaney was 5 days old and still had not had her first bowel movement. Well, that certainly explained why she was such a fussy little thing. I just thought she was going to be a high-maintenance baby. The doctor said she was probably just constipated because of all the different formulas we had tried to get her to tolerate. She had been on Goodstart, Soy, Allimentum, and Lactose-free formulas. We tried everything, because she had the ability to suck from a preemie nipple, she just kept throwing everything up. Her belly was a little swollen after so many days without a bowel movement, so they wanted to give her half a glycerin suppository. I said that was fine because I just wanted her bowels to move and for her to be more comfortable. If I had only known! Almost immediately after the suppository, her bowels certainly did move! Over and over and over again. Delaney went from constipation to diarrhea in no time. It didn't take long for her to become severely dehydrated as I changed between 15 and 20 diapers just that first day. Delaney was transported by ambulance to East Tennessee Children's Hospital when she was 8 days old. She was placed in a private room and taken care of by nurses who regularly worked on the NICU floor. The best thing about her transport was that I could now room in with her! It was an awesome feeling to be able to stay with her all day, everyday. A GI specialist was called in to evaluate her right away. He was a fantastic GI doctor named Dr. Al-Tawil. He checked her over and started ordering tests for her. Over the next several hours Delaney had a barium enema, renal ultrasound, spinal tap, voided cysto-urethragram (VCUG), and a NG tube. She was switched to a formula called 3232-A, and scheduled for an endoscopy and colonoscopy. Dr. Al-Tawil even gave a name to Delaney's tummy trouble. He said she had "slick gut" also known as Intractable diarrhea in infants. He assured me that this was not caused by the suppository, that the glycerin is just what got the bowels moving to begin with. Her illness was set off by the milk protein that we now know she is allergic to) and was exacerbated by a growth of bacteria in her intestine. He explained to us about microvilli in the intestine. Her villi were mashed flat and that without intervention, babies with this disease process would die from dehydration and malnutrition. Without working villi, a baby is unable to absorb the nutrition it needs to thrive. It was a great relief to know what was wrong so that we could work on making her feel better. I was so anxious to finally take her home. The endoscopy and colonoscopy were performed as well as the renal ultrasound. We were told that Delaney's kidney's were functioning so poorly that she was in what they consider acute kidney failure. The infection she had mostly caused that. The were certain this was temorary and that normal kidney function would return once the infection was gone. However, we learned after the colonoscopy that she has hirschsprung's disease. I had heard of HD before. I always thought that HD just causes constipation. I was quick to ask that question. How can she have HD if she has diarrhea like she does right now? They explained that often, children with HD have more diarrhea than usual. The bowel doen't function properly because of the disease. It's not unusual for a child with HD to go from constipation for a week to diarrhea for a week. Long story short, this turned out to be the case for Laney. In 18 months, she has never had a regular BM. She rarely has a BM that is not brought on from laxative use, and when she does have a BM without using a laxative, it is after several days of waiting and crying with tummy aches. So now you know a little about Laney's tummy trouble.

What is causing Laney's tummy troubles now is an infection that is aggravating the HD. She will be okay, but is feeling just awful right now. Dr. Al-Tawil thinks that now might be a good time to start thinking about the pull-through surgery that will help the HD. I think that might be the best thing for Delaney at this point. I think Delaney's been through enough tummy trouble to last a lifetime. We are hoping she is over the infection soon, so that we can get her surgery scheduled.