Noah turned two on July 1st this year. I can't believe he has been with us for two years already, the time really has flown by. That statement seems like a cliche, but in this case the reason the sentiment is so exhaustively used is because of the overarching feeling of those of us brave, or stupid enough to have children. You pour so much of yourself into your children. From the moment they are placed into your arms there is a change. You're still you, but you are a different version of yourself. You do things you would never have imagined yourself doing because they are entirely helpless and you're all they've got. I've argued with doctors armed only with my limited medical knowledge gleaned solely from the internet. I've cleaned and wiped up things that you should only approach while wearing a hazmat suit. I've survived on less sleep than I thought was humanly possible. But mostly, I've worried. I've worried about sniffles, worried about safety, worried about discipline...worried about diagnoses. After becoming a parent, you agonize over all manner of things seen and unseen. And it's the unknown that really gets you. The problems at hand you deal with and attack, the ones that live entirely in your head are a bit more problematic.
I don't entirely remember what my expectations were two years ago when we learned Noah had Down syndrome, but I'm ashamed to admit that the past two years have been far better than I thought they would be. And by better, I mean unfathomably incredible. It's better than the expectations I had after we found out Agnes was pregnant and Down syndrome was something that happened to other families. My mind began building the scenes of these two brothers growing up together, scenes that were very similar to me and my brother. But then the diagnosis came, and I thought that was all over. I was wrong. This was better. My two boys got lucky.
Noah's unique story begins late in Agnes's second trimester when she felt and looked huge, but in a glowing bringing forth life sort of way. The doctor said she was measuring big so she wanted to do another ultrasound. That's when they saw the "double-bubble". Which is an ultrasound signature for a duodenal atresia, which basically means that Noah's stomach was not connected to his lower intestine and because of that he was not processing amniotic fluid correctly and had what amounts to an Olympic size swimming pool from the fetus point of view. So we went to the worst place you can go when presented with a medical ailment...the internet. The two big things we discovered: Immediate surgery after birth, 20-40% chance of Down syndrome. Well this was a shock, but the odds were in our favor.
The extra fluid can trick the mother's body into thinking that it is further along than it actually is. Sure enough, on the last day of Noah's 33 week gestation period, we were rushed into the operating room for a c-section. Everything went beautifully, Agnes was well and Noah came out screaming, a little tiny at 3lbs 15 oz, but screaming none the less. Then the "fun" begins.
Since the contents of his stomach had nowhere to go, they had to put a tube down his esophagus to drain the fluid. Also, since there was a chance for Down syndrome he was checked out immediately by a geneticist. After cornering her and not taking no for an answer, I asked her what she saw. Low muscle tone, single crease on the palm, and a flat nose. All visual signs of Down syndrome but we would have to do some test to determine for sure. It's strange, but you cling to that. They still have to do some test. Deep down you know it's true, but the hope that the test comes back good have you thinking things like, "you know from this angle he doesn't look like he has Down syndrome".
Then he was whisked off for the standard new born testing along with additional confirmation of the intestinal blockage. We were sent to a recovery room, while the anesthesia from the c-section wore off. The feel of this room couldn't have been more different than the preceding hours leading up to our occupation of it. The frantic fast paced chaos of the operating room gave way to a room whose sterile white walls felt much like I did on the inside, empty. Agnes and I sat there, mostly in silence because all we had were questions and very few answers for one another. After what seemed like an eternity, a nurse came in and basically repeated what the geneticist said regarding the suspicion of Down syndrome. She also said that the surgery to correct the blockage was necessary and Noah would be transported soon to Le Bonheur Children's Hospital. She asked if we would like to see him and we of course said yes.
I remember being anxious about seeing him again. I was worried I would only see the Down syndrome and not be the gushing father I was when he was on the warming table shortly after delivery, which, while only being an hour earlier, seemed like a world away. My fears were unfounded. We came into neonatal intensive care unit and I saw my youngest boy who was tiny but surprisingly strong and he let everyone know that day that he was not someone that needed to be pitied.
Soon after we left, the critical care transportation crew from Le Bonheur came to take Noah to the children's hospital where they would fix the blockage along with anything else they might find during the battery of test he would undergo over the next few days. I remember these first few days being the worst. Agnes would have to spend them in one hospital recovering from the delivery while Noah was due to have surgery in his respective hospital on the other side of the city. Meanwhile Andrew was stuck right in the middle, being shuffled between grandparents while being thoroughly confused. The only solace was the drive between each location where the still and silence of the steering wheel offered a short reprieve from the hectic world unfurling around me.
It wasn't all bad news. Other than the stomach issue and an elevated bilirubin, easily remedied by ultra violet lights, he looked to have no other major issues. We were very happy to hear this since congenital heart problems are so prevalent among babies born with Down syndrome.
On July 3rd, in Noah's 42nd hour of life, my mother and I wheeled him into the pre-op room to get ready for his stomach surgery. They told us that it would be 1-3 hours depending on what they found while they were in there and that a nurse in the operating room would call every 20-30 minutes to give us updates. Noah, of course, exceeded all expectations. Babies usually lose enough blood to require a transfusion; he didn't. They usually have to stay on the ventilator for 2-3 days; he was breathing on his own 6 hours later. The amount of fluid coming out of his drainage tube was less each day and we were on track to head home in two weeks.
In the meantime, Agnes was finally discharged and Noah got to see his momma, who had not even been able to hold him since he was born. In the early days the tangle of monitor wires, tubes and IV's made any effort to hold him an adventure. But we did it as much as they would let us.
Everything was going well and it looked like Noah would set a new record for recovery from this type of surgery. However, even as incredible as he was, his tiny body was not able to shrug of the intense stress of those first few days. About two weeks after his surgery, the nurses started to notice that the oxygen in his blood was getting low. X-rays showed he a little fluid buildup in his lungs. The doctors decided to do CPAP breathing treatments, which is a mask over the mouth and nose that provides higher oxygen levels and a little bit of pressure so he wouldn't have to work as hard. They were hoping this would give him the help he needed and he wouldn't have to be put back on the ventilator. Throughout the day, this seemed to do the trick. Early that evening, though, the oxygen levels began to drop again. They put him on the ventilator but that only worked for a little while and they had to keep turning up the pressure to inflate the lungs; he was no longer breathing on his own. With every increase in ventilator pressure accompanied by a steady decrease in oxygen levels, I began to start fearing the worst. His color was getting worse and the doctors were scrambling to determine the problem so they could correct it.
Doctors took x-rays and discovered his right chest cavity was filling with fluid which was not giving his lung any room to expand. They drained the fluid with a syringe and put a chest tube in to collect any future drainage. It turns out that the stress of the operation had caused a tiny tube, that carries fluid containing white blood cells, to clog and this was backing up into his chest. The results of the chest tube were almost immediate. His oxygen levels shot up and the ventilator was hardly doing any work to support his breathing. We were happy to have him back but we were told that the fatty acids in breast milk could cause prolonged blockage of the tube and the doctors would not allow him to nurse once the drainage tube came out and he could eat. This was a big setback for us. We prescribe to the benefits of breast milk and what little research we had done to this point indicated that the fat in the milk helped with brain development which was especially crucial for a child born with Down syndrome. Our families scrambled, and we were able to find a couple of research papers where breast milk not containing the problematic acids had been used with success in similar cases. With Agnes's persistence, along with the advocacy of the hospital's lactation specialist, the doctors agreed to allow Noah to have the modified breast milk. Luckily, all this was the last major setback we had at the hospital and we spent the next month getting his weight up so we could get him home.
Finally, on August 24th we were able to leave the hospital and Noah was introduced to his new home and got to meet his puppy dogs.
Now fast forward 2 years, and we have a lot to celebrate. He has remained relatively healthy despite his naturally snotty nature arising from everything on him, from ears to nasal passages, being extremely tiny. He continues to exceed expectations and work hard at all his early intervention therapies. But more importantly, he is already shaping up to be a great brother, incredible son, and all around amazing guy. He really does make everyone he comes in contact with better.
And of course there was a party.
