My second child is finally here but not without some excitement. And I'm not even talking about the excitement of the delivery which you can read about in the last post.
He has a condition called Hirschsprung's Disease that makes a portion of his colon (the tail end, pun intended) not function. Which means he can't pass waste properly. If nothing's coming out, nothing can go in (no room) which was the first symptom we noticed. He wasn't holding anything down when we fed him.
On day two of my son's new life, the doctors sent him to Riley Children Hospital for diagnosis, which conveniently sat next door to the hospital he was born in. He was checked into the NICU for observation and hopefully a diagnosis, hooked up to IV's (one coming out of his head) and a suction tube down his throat to remove whatever he hasn't already vomited.
Our hearts were broken.
Before we knew he had Hirschsprung's, most cases of newborns vomiting green fluid indicates a blockage somewhere in the digestion system, usually somewhere between the stomach and end. The green is the bile in the stomach used in digestion. Since he wasn't eating anything, all that was present in the stomach was this stuff and since there's no way else out of the body, the stomach sends it back up. A blockage in the intestines is much more common than Hirschsprung but it is also more of an emergency to deal with. It can be a twist in the intestines somewhere or an actual obstruction, both of which require immediate surgery to correct.
In Hirschsprung's, the temporary solution is to install an ostomy bag while the infant grows a bit stronger and bigger, then brought back at a convenient time (convenient for the patient) to correct the deficiency with surgery. It might be several months (up to nine) after diagnosis before the big surgery is done to correct it. There's no real hurry.
The surgeons discovered he had Hirschsprung's by performing a test done with a biopsy of his colon, sent to a lab and tested for a genetic defect where the nerves of the colon that function to push the waste out don't develop during gestation. The gene responsible for this is also a gene responsible for certain types of pheos, which is a condition his mother has. But it's the wrong kind of pheo. My wife's genetic defeciency is called SDHB. The Hirschsprung's gene creates pheos of MEN type. The surgeon wanted to make this connection, but the odds of a mother and son having pheos of differing types is more astronomical then any of the lottery systems in the world. It's rare enough to have a pheo. For 2 people in the same immediate family to have unrelated (non-inherited) pheos is just virtually impossible.
The one funny thing about this whole ordeal is that this hospital deals mostly with premature babies. After hauling our 10 pound full-term baby in there, he was Goliath among many David's. The wonderful nursing staff there had to readjust their expectation when picking up their newest patient and maybe their stance a little to steady themselves. Getting themselves checked for hernias after their shift was probably something they considered, I imagine.
My son was in the NICU from Tuesday December 4th until early Saturday December 8th, after which he was upgraded to the Infant Unit part of the hospital. Besides not being able to poop, the boy was too healthy to remain in NICU even though he still hadn't eaten anything since being born. During this time, Mrs. Lock was discharged from the hospital, deemed fit to return to society after her C-section. That was on Thursday the 6th.
The two hospitals are actually connected by an underground tunnel. While Mrs. Lock was in her hospital, we'd run over to visit our son in the neighboring hospital. I say run, it was actually wheel since Mrs. Lock was still recovering from C-section surgery. Imagine navigating old, smelly, creepy, dank tunnels with a patient in the wheelchair. We did some late night crossings to pay him visits. I don't know how far it was, felt like a mile of walking (pushing), but realistically it was probably closer to a quarter of a mile. Since we've been discharged though, the visits would have to be by car now.
It occurred to me at this point that for most of my son's life, all one week of it, he knows nothing other than IV's and feeding tubes and beeps and alarms and strange people dressed in blue catering to his every need. For most of his life so far, he's been in a sterile environment, laid up in a steel cage they call a bed, with little or not contact with his parents. They say bonding with your newborn, that physical close contact has an effect on a child's development, and yet we can only hold him for a few minutes a day. His first impression of life must be a strange one. Any situation for a newborn, sick or healthy is a strange one after incubating in a dark womb for nine months. This is what his cells are going to remember.
On Tuesday the 11th, my son had minor surgery (is any surgery minor?) to have a colostomy bag installed to remove from his body what his body couldn't. We were fearful and dejected to consent to this but he was a week old and still had nothing to eat. We knew it wasn't a good thing and we were starting to feel desperate.
After the ostomy procedure, they wanted to give our son about 12 hours for his system to flush out any fluid which was now going into this clear plastic pouch attached on a hole (hole = stoma) on his gut before they tried to feed him. We went home for the night, hoping for the best. We knew they'd be feeding him at some point on the midnight shift. We went to bed that night hoping for good news in the morning.
Wednesday morning came. We were anxious. My wife handed me the phone, asked me to call to get the news because she was too nervous about what they might say. I don't remember if I had any expectations. I think I was thinking that whatever the result, we would deal with it... somehow. So I called and listened to the nurse explain to me what happened. I'm sure my wife wanted to listen too but she didn't. She waited for a sign from me.
We got the news. For the first time in his life, our son ate.
I gave my wife the nod, whispered "He kept it down." Much relief. Actually, we were giddy to hear the news. Clapping in the bed. Eyes swelling up. We couldn't wait to go in to see him.
We got to the hospital and we continued to feed him every few hours with little to no problems. They even decided to give him some breast milk his mother had been pumping and refrigerating since he was born. We were happy to see he was keeping that down too.
He was doing so well after the surgery, that on Thursday the 13th, they decided to discharge him and send our little boy home with us. We were surprised to be taking him home two days after the ostomy surgery but we were also happy to get out of there.
We got home. My mother was watching our daughter for us. I sent Mrs. Lock into the house ahead of me and I quietly brought Baby Lock in behind her. I set him on the floor (still in his car seat I should point out), out of view and I walked in behind my wife. We greeted my mom and our daughter as we have been doing every day for the past week and as expected, my mom asked, "So how's he doing?"
I said, "Well..." and then I disappeared back into the hallway where I had set him down, picked him up, brought him into plain view and said, "You can ask him yourself."
If we were surprised to be taking our boy home today, my mom must have been triple surprised to see him. She was ecstatic that her grandson was home for the first time and she flocked to him like a grandmother would. She asked a million questions about how we were able to bring him home so soon, all the while not taking her eyes off of him. Maybe she thought if she looked away, he would disappear.
After getting situated, everyone de-coated and sitting down, my mom called my dad to tell him the good news. It was welcome news for all of us.
So now our family is finally home. Me, Mrs. Lock, Daughter Lock, Newborn Son Lock. And we couldn't be happier. We just wait for the day when they can do the surgery to fix him for good. The prognosis for infants with Hirschsprung's is very encouraging too. He should lead a very normal life after it's all said and done and he won't remember a thing.
That's a good reason to write about it.