It seemed to us that in the CICU, if it didn't have to do with the heart, it just was not important enough to worry about. We had asked for someone to look at Max. It had been over twenty four hours since the surgery and she had not pooped yet. "It's just the anesthesia", they told us. Yea right.
They finally moved us back to the NICU. Max was back with her buddies, Sara (also DS) and Conner (premie, tracheotomy, and many yet to be discovered wonders). Her bowel movements were at best, sporadic. But at least she was being cared for by doctors that knew a lot about body parts other than the heart.
I remember sitting in the hallway and one of Max's general surgeons came out. I was pretty frustrated by this point and started peppering her with questions about what was wrong with Max. "Why doesn't she poop? Is she just constipated? Is it the anesthesia? What!?" Then, getting a wee bit hysterical I ask her, "What if it's Hirschsprung's Disease?"
"Oh, it's not Hirschsprung's", she answers.
During my early research into Down Syndrome, I had come across Hirschsprung's Disease and was very bothered by it. Not by what it was or it's outcome, but by that name. Hirschsprung's Disease. Say it. Out loud. It is a very scary name. Not something that anyone would want to have. Let alone their child.
Max had Hirschsprung's. It was confirmed with a biopsy a couple of days later.
During the formation of the fetus, as the nervous system is developing, neurons 'migrate' down the gastrointestinal tract. This is the system that moves the food along until finally discharged at the other end. In Hirschsprung's the neurons never make it to the end of the line. Imagine a trolley route that is missing the upper wire for the last mile. And the trains don't stop coming. Sometimes the trains in the back can push the lead trolley out. But most of the time, it is just one big pile up.
I was almost relieved. I am a strong believer in the rule that says that trouble comes in threes. And with the diagnosis of Hirschsprung's, Max had hit the magic number. That's it. We're done. Buh-bye. One more surgery and we are outta here.
Well, actually two. Possibly three. The procedure goes something like this. Disconnect the lower GI from the rectum. Take a slice and send it to pathology. Count the neruons. Not enough? Take another slice. Keep going until you find enough neurons to do the job. Take remaining bowel and splice into the stomach wall, forming a colostomy. Wait several months for healing and to confirm good bowel movement. Go back and reattach colon to rectum. Simple.
Maybe on a full size human. But try it on an eight pound bundle of joy.
I have great respect for pediatric surgeons. Learning you way around a 150 pound body is a great skill, doing the same on an infant is supernatural. I remember everytime we saw our general surgeon, he would always be carrying this beatup little wooden box amid all the charts and papers and whatever. "What is that?", I asked him one day, pointing to the box. "Oh this? This is my favorite tool for surgeries." He opened the box and showed me. It was a pair of magnifier glasses.
An experience such as this makes one tend to look at things a little differently. You try to find the good in all the bad, even if it is skewed a bit to one side. One great positive is you are no longer grossed out by anything medical. Things that would have made me cringe in horror before Max was born were now routine. In a way, I wish everyone could experience it. It allows you to look not at the condition, but at the person afflicted with that condition. I used to be scared to death of going to the doctor. Now I just tell myself, 'if my daughter could do it, so can I'. (This came in particularly handy during my first colonoscopy.) Still, in retrospect, Maxine's colostomy was pretty gross. Her doctor had not done a cosmetic blending with the abdominal wall since he would be reattaching it in a few months. We named it Mount Vesuvius.
Max became a much more likable baby after the colostomy. She was able
to poop with the best of them. It just came out from a bit further north.
A little under a week later, we went home.