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1/21/2016 Latest post:
Here's an overview of the events that kicked off this long journey of ours.
Matthew was born on September 29th at 7:55am following a routine repeat c section. All prenatal testing was normal and my pregnancy was relatively complication free. The only hang up we had was when I was 21 weeks pregnant. I developed a fever of 105 and was diagnosed with a kidney infection as well as suspected appendicitis. I underwent surgery for an appendectomy (which turned out being fine), and it took about 4 days to find the right antibiotics for the infection. All the doctors have said that the fever, medications and the infection should not have had an effect on Matthew (which they still stand by).
He was born head down, sunny side up, with his feet extended to his face. In the delivery room he was pretty listless when the nurse put him on my chest, and his cry was a little weak. I was reassured this can happen sometimes. I had my doubts - Hailey was born under severe distress and yet she was livelier than Matthew was. We were told he would need physical therapy for his legs, but not to worry - it was no big deal. However, he wouldn't nurse immediately - nor for the rest of the day, for that matter. He wouldn't fuss, cry or express hunger. He was just 'there.' If we had let him, he would have just laid in his bassinet indefinitely. Around 7pm that night, the nurse checked his blood sugar, which turned out to be low. She tried giving him a supplemental bottle but he choked on the formula instead. He was immediately taken to the NICU, and thus began the scariest time of our lives.
After admission to the NICU, he was given IV dextrose to bring his blood sugar up. He was found to have absent suck, rooting and gag reflexes with a weak swallow. Drew needed to run home to help with the other kids, and in the meantime I was told by neurology that impaired lower brain function and chromosomal abnormalities were suspected. I sat in my hospital room, alone, and sobbed. Once I collected myself, I called Drew and he had to receive this same news over the phone. I considered waiting until he came back, but he wouldn't return for at least three hours and I knew he would have wanted to know right away. We went from excitedly welcoming our last child into the world to that same world being turned upside down, and then crushed, in a matter of hours. After a couple days, an NG tube was placed to feed him through the tube. That evening, during one of the worst days of my life, the pediatrician walked me down to the NICU and listed everything that was beautiful about our son: his heart, his lungs, kidneys, and even down to his hair and perfect baby blue eyes. The staff was pretty amazing.
Matthew was also observed to have hypotonia (poor muscle tone), malformed feet with short Achilles' tendons, wide set nipples, recessed chin and a high-arched palate. All along the way I naively, but legitimately, thought that at some point we would be told that it was all a fluke and he was fine. The neonatologist asked us about transferring him to a hospital closer to our home, which I was honestly confused about because I was still in such denial that I honestly did not believe we would be going home without him.
We worked daily with speech therapy trying to elicit suck reflexes. Extensive testing was done, all resulted as 'normal:' brain ultrasound, brain MRI, echocardiogram, spinal ultrasound, EEG, microarray, hypotonia panel, plus a muscle biopsy which was inconclusive. Just before turning two weeks old, on October 12th, he was transferred to a larger hospital to undergo surgery for placement of a g tube. This would allow us to bring him home on tube feedings. As excited as we were (are) for this option, it felt like we were admitting defeat and giving up.
Matthew is seeing speech therapy currently. Our goal is for him to safely undergo a swallow study so that we can visualize his muscles and whether he aspirates or chokes on milk. Assuming all is well, we should be able to start him on (very small - a tablespoon or less per 24 hour period) oral feedings to begin strengthening his oral muscles with the goal being that we can increase the feedings until he can one day be weaned off of the g tube. This will be a long process; we are talking at least a few years. As far as doctors, we have second opinions scheduled at the University of Chicago. Matthew sees neurology on January 21st and Genetics on April 1st. He is having surgery on his feet January 26th so that he will be able to walk when he is older. The orthopedist gave us a 50/50 chance he would need a second orthopedic surgery in 6-9 months.
In the mean time we will continue searching for a diagnosis to offer insight into what is causing these problems and hopefully obtain some kind of prognosis. And of course lots of snuggles with this sweet baby boy! I have searched for *anyone* with a similar situation, of which I have found no one. This has definitely been the most trying experience of our lives. Matthew is a little fighter, though, and even if we don't find answers there is no shortage of love for our sweet baby boy!