Just a note that this post talks a lot about intestines, if that grosses you out you should skip! Also not a post with a happy ending, but we’re getting there!
We last left off with D readmitted to the NICU with plans for exploratory surgery in the morning since he had some kind of abdominal issue.
Mr. Tiger and I arrived at the hospital just in time to see D off before the surgery (although he was already intubated and drugged up on morphine). The surgeons got our consent and explained they were going to go in through his belly button with a small camera, and see if they could tell what was wrong. They warned us that the worst case scenario would be that they would have to remove a section of the intestines, and that if the remaining intestines were too inflamed, they’d have to stay disconnected (outside of his body) for several weeks until they could be reconnected. I consented without really understanding what this meant, since what other choice did we have?
When the surgery was over and the surgeons brought us back into the mini conference room, which is always the longest 30 second walk I’ve ever had – what if they are bearing bad news? They explained that although the surgery went well, they did have to deal with the worst case scenario. D had developed Necrotizing Enterocolitis, or NEC, which meant that part of his intestines had actually died – hence the abdominal distress and bloody poops. They had removed 15cm of intestine, so now he had an ostomy bag (for the part of the intestines that came from the stomach, to empty out) and a fistula (the part of the intestines going to his butt which would be unused until reconnected).
I later was researching NEC and discovered that 1 in 4 babies who get it, die from it. Although the specific cause isn’t known, preemies are the most susceptible, although the vast majority get it while pre-term and still in the NICU. Preemie parents may remember a lot of belly measuring — identifying stomach bloating caused by NEC is one of the reasons why.
It was very strange for D to get it, since he was 3 months old (1 month adjusted), and was on 100% breastmilk (formula fed babies are at higher risk). However, his current GI doctor believes that when he had his brain injury at birth, his intestines may have sacrificed themselves and were weakened, putting him at higher risk.
It was very hard seeing him with the ostomy bag. It felt so…unnatural, and this is coming from a mama who was happy with the feeding tube! That said, many babies/children have to go home with ostomy bags for some period of time or indefinitely, and I mean no offense to them or their situations; I am talking about my personal feelings at the time.
Mr. Tiger and I only hung around briefly after the surgery, since D was completely drugged up on morphine and totally out of it. When we came back later in the evening to check on him, he was able to squeeze our fingers lightly, which was a welcome change from the scary unresponsiveness earlier.
On top of all of this, D’s care team decided to investigate us for child abuse (or as they called it, non-accidental trauma). D had some bruising on his hips when he was admitted (which the surgeons said was likely from his belly being distended), but the bruising combined with the unusual case of a 3 month old with NEC raised enough suspicions.
Mr. Tiger and I were livid. They interviewed us separately, took pictures of D, and ordered a full body X ray and a CT scan, among other things. Thankfully after our separate interviews (which oddly enough did not ask me if I ever hit him or shook him or anything I was expecting) they decided to drop the investigation, so D didn’t have to go through the unnecessary testing. I understand in hindsight that they need to do investigations for the well-being of children, regardless of how friendly or nice the parents are, and I’m glad they were looking out for D, but it just added insult to injury for us.
Thankfully after that bump in the road, and the risky but successful surgery, D was on the road to recovery. He was able to be weaned back off of the ventilator, but his tummy was sore for a while, which changed his daily activities a lot. The plan was to leave him unconnected for 6-8 weeks, and then get the reconnection surgery, and then go home. Of course, nothing ever goes to plan.
to be continued…
D’s Journey part 4 of 131. D's Journey, part 1 - Premature Labor and an Emergency C Section by Mrs. Tiger
2. D's journey part 2 - 1st NICU stay by Mrs. Tiger
3. D's journey part 3 - briefly home by Mrs. Tiger
4. D's journey, part 4 - Necrotizing Enterocolitis by Mrs. Tiger
5. D's journey, part 5 - 2nd NICU Stay by Mrs. Tiger
6. D's Journey, Part 6 - Intestinal Rehab by Mrs. Tiger
7. D's Journey, part 7 - home again! by Mrs. Tiger
8. D's Journey, Part 8 - Early Intervention by Mrs. Tiger
9. D's Journey, part 9 - Cerebral Palsy by Mrs. Tiger
10. D's Journey, part 10 - Physical Therapy by Mrs. Tiger
11. D's journey, part 11 - Eating by Mouth by Mrs. Tiger
12. D's Journey - My Perspective by Mrs. Tiger
13. D's Journey - A Giant Leap by Mrs. Tiger