When I started this blog I wanted it to be about my family, one of whom has special needs. What I didn't want was a Special Needs Blog. I realized though, that to ignore Thomas's story altogether means that there are things I can't say because they wouldn't make sense. So here you go.
When I got pregnant with Thomas I was considered high-risk because I was 36. My ob-gyn suggested that I have the 11-week Nuchal Translucency Test. No problem, I thought, this just goes along with being a little older. I have to say though, that every time someone said "advanced maternal age" within earshot I wanted to smack them sideways and shout "I'm not FIFTY for God's sake. I'm 36! I'm YOUNG."
About 2 minutes into the test I saw the sonographer's face go still and she got very quiet. Not a good thing. She summoned the doctor, a very kind man with a very serious face, and he told me that there was a 50% chance there was something genetically wrong with my baby. Probably something like Down's Syndrome. My husband and I were devastated, of course, and thus began my running of a veritable gauntlet of tests for the next 24 weeks. The thing is, EVERY SINGLE TEST came back normal. Chorionic Villus Sample? Normal. Multiple in-utero echocardiograms of Thomas's heart? Normal. Ultrasound after ultrasound? Normal. The doctors were elated, but deep inside I knew there was still something wrong.
The day Thomas was born I was at work, trying not to pester Dr. Google too much about prenatal stuff, when I noticed that he was not moving much. I tried all the tricks - I drank a Coke hoping the sugar and caffeine would get him moving, I laid down in my boss's office on my left side, poked my belly, nothing got a reaction. I went in to my ob-gyn's office for a non-stress test, and the next thing I knew I was being prepped for an emergency c-section.
When Thomas was born he was blue and still, not breathing. I had pretty much stopped breathing myself out of pure terror. My husband went back when they whisked Thomas away for resuscitation, and when he came back he told me that there was clearly something wrong with our baby. I don't remember much else but I do remember starting to cry.
Later that afternoon the neonatologist came to my room to discuss his findings. He started out by saying "Frankly, I'm disturbed by what I see." He went through a list of so-called "dysmorphic features" indicating a probable genetic abnormality, and when he got to the end I lost it. "He is missing his left eye." My poor little boy, all alone in the nursery with people inspecting and prodding him all over, and I couldn't even be with him because my legs were still numb from the spinal block.
Later the neonatologist came back to tell us that they had reintubated Thomas because his oxygen levels were dropping. I told my husband to lock the door. Every time that doctor showed up he had bad news and I didn't want him coming back in. We started calling him Dr. Doom.
A day later Thomas was transferred to Duke University Medical Center, 45 minutes from our home, because he had developed PPHN. I told my ob-gyn I could either leave against medical advice or they could discharge me, but I was going with my baby. They discharged me.
It was at Duke that we learned that Thomas had a genetic abnormality called a microdeletion. He was missing tiny strands of genes off of one of his 8th chromosomes. The syndrome is so rare is doesn't have a name and no one could tell us what it meant for Thomas, his development, his future. As no one at the time could tell us if he would live, his genetics were not our top priority.
Thomas gradually improved, moving from an oscillating ventilator to a regular vent, then to C-PAP, then a nasal cannula. All of these days blur together in my mind now, I only remember hour after hour of hovering over a hospital bed willing my son to live. Just LIVE. Please. I made bargains with God. I swore at God. I apologized and negotiated more bargains.
Thomas was finally moved from the PICU to a regular room where I was able to spend the nights with him. We brought him home 3 weeks after he was born, but he had an NG tube for feedings because he couldn't coordinate his suck-swallow-breathe reflex.
5 weeks later we were back to have a g-tube placed.
When Thomas was 9 months old he got his first prosthetic eye. It fits perfectly in his eye socket to help his face grow normally, and it is hand-painted to match his other eye - the most beautiful blue you've ever seen.
He started a variety of therapies to help his development - occupational, physical, speech and feeding. He will eventually learn to eat, but for now he gets all his nourishment through his g-tube. He doesn't yet walk or talk but we are getting close to both.
He is the happiest, sweetest three-year-old you will ever meet. His laughter is contagious, his smile lights up a room and his blond curls are irresistable. He is the love of my life.