Justice’s second stay in the hospital was a regrouping of sorts. We knew by this time that things were not going to go away on their own and I desperately needed some help figuring out how to care for this child.
When we had left the NICU, we had actually only seen a gastroenterologist a handful of times. He had explained to us that when a baby is forming their intestines are too large so they are on the outside of their body. When the baby is big enough, they turn, I want to say 180 degrees but I could be wrong on that number for it’s been a long time, and come into the baby’s body. That’s how we get our large and small intestines in the position they are in. Justice’s, however, did not turn. They came straight in so she has what is called a Non-rotation of the large and small bowel. The problem with this is there is only one major artery that supplies blood to your bowels and in this position it could easily get kinked off and, at best, she would lose her bowels but most likely, she would die.
The other problems we had dealing with gastroenterology or GI for short were her constant vomiting and extremely slow moving digestive track. It was taking us hours to get an ounce of formula down only to have her vomit up the last 4 hours of work. She was not growing at all. She was slowly starving to death because her body was rejecting the food. The formulas we were using were so scientifically developed her body didn’t even have to digest them. That was already done, she just had to absorb it and we couldn’t even accomplish that.
GI was also concerned with her feeding tube. In the beginning tube feeding was supposed to be a short-term fix until we could get her to eat orally. It was very clear by now that oral feeding was not our biggest concern or at least it had been forced off the top concerned list whether I liked it or not. As hard as it was emotionally to except that Justice was going to be tube fed long term, that was reality and it was not in her best interest to have a tube stuck up her nose, down her throat and into her stomach long term. It was time for a more permanent solution. She needed a G-Button. I plan to blog more on the emotional trials of tube feeding your child in the future.
The last thing I was concerned about, GI wasn’t so much but the surgeon ended up agreeing with me, was due to her Non-rotation her appendix was on the wrong side of her body. This concerned me because I felt, should she have a problem, would the local doctors know what symptoms to look for?
These were the problems they found on the Upper GI that dreadful night in the NICU. This is what they thought they needed to do emergency surgery on but called it off the next morning. Now at this hospitalization it was apparent that we were not going to be able to put it off much longer. Justice was not growing. Her vomiting was at dangerous levels of starvation and dehydration and she was vomiting bile up daily now. The problem was her heart had changed and would most likely not withstand undergoing these four massive surgeries in a 5-pound baby who has extremely poor nutrition. Who would go first Cardiology or GI done by PediSugery?
We spent this stay in the hospital really trying to figure out which came first the chicken or the egg. Cardiology said they needed Justice bigger to undergo the heart surgery safely. Plain and simple, they needed her to gain weight. GI/PediSugery insisted there was no way for her to gain weight without a Fundoplication (for the vomiting), G-button (feeding tube), and Ladd’s Procedure (for the Non-rotation). They would also take out her appendix at the same time. Again, Cardiology said “NO but make her bigger so we can do our surgery.” In the end, Cardiology just could not give the OK for the GI surgeries so Cardiology would go first. We would have to go home for a few more weeks to try to gain ANY weight but we were soon heading back to our second home for the first of many surgeries.
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