Hello All. Thank you so much for all of your thoughts and prayers. We are just having to take things one day at a time. Today, Sunday May 25th, Lainey had surgery at Egleston. She is 5 days old and has yet to have her first bowel movement. They believed that there was a spot in which her colon was not connected, therefore she wasn't able to go to the bathroom. After opening her, they realized that everything is connected. This is great because they did not have to cut or sew her colon. The issue that continues to be a problem is that the meconium (the first stool a baby has made from amniotic fluid and stomach bile) is unusually thick. The doctors were unable to manipulate the bowel in a way that would allow the meconium to pass through the colon. They put a tube into her colon to allow them to loosen the meconium with special liquids and for them to be released. This is a step they take before an ilestomy (similar to a colostomy, but it can be reversed). They are hoping that this will loosen things up enough so that she can begin having bowel movements. This will take approximately 4 days to occur. After passing her first few bowel movements, feeding will be presented. She may have to be tube fed if she does not tolerate breast milk or formula. They are calling her condition, Meconium ileus. With what the doctor saw, she thinks Lainey has a classic case of Cystic Fibrosis. A geneticists will test Lainey for Cystic Fibrosis some time this week. We will most likely be at Egleston for 3 weeks, but it could be longer if she has difficulty with feedings. It could also take longer if they find it to be true that she has Cystic Fibrosis. I know this is a lot and maybe more than you would like to take in, therefore you can understand how difficult this has been on our family. Our dreams (and my checklist) of bringing her home from the hospital on Saturday changed into following her in the Angel II transport to Egleston. All we can say is thank you for everything. I know that your thoughts and prayers have helped her and will continue to help her and our family through this difficult time. Thank you again for everything.
DeAnn and family
Meconium ileus: Obstruction of the intestine (ileus) due to overly thick meconium, the dark sticky stuff that is normally present in the intestine at birth and, after trypsin and other enzymes from the pancreas have acted on it, is normally passed in the feces after birth. Meconium ileus results from a deficiency of trypsin and other digestive enzymes from the pancreas, as in cystic fibrosis (fibrocystic disease of the pancreas, mucoviscidosis).
nine years of letting go
3 weeks ago