4P Inc: Perpetual Preemie Parent Paranoia: Happy Love Day!

Monday, February 14, 2011

Happy Love Day!

Tomorrow would have been Noah's due date and thus, his 1st B-day, and we would have been celebrating our little love bug's first year. But alas, you all know the story of how that went and we'll look at this date as the day that should have been. So in honor of that, here's his stats from today's visit where we got the results of his biopsies (more on that below):

weight: 18lb 14oz
height: 29.5 inches or 2' 5.5''

So, Dr. Taylor advised us today at our follow-up appointment that Noah's biopsies came back clear and that he doesn't have any new damage or trauma from his reflux. Great news! The only downside to this "great" news means that Noah's eating and vomiting issues are behavioral and will only be able to be fixed through feeding therapy and with a lot of time. Basically, she said that somewhere along the line, most likely in the NICU and as a result of all the OG (oral gastric) and NG (nasal gastric) tubes being inserted and removed to feed him and keep him alive, his gag reflex was triggered and is now overly sensitive. This leads him to vomit and be afraid of things going down his throat aka swallowing. I can totally see this point but where I'm more concerned is the fact that Noah just downright doesn't like to eat, period. He doesn't hold his bottle, he doesn't like to eat purees, he doesn't self-feed with food on his tray, when he does eat table foods he only takes it from my fingers (absolutely hates spoons) usually only take 3-4 bites and then he's done, and he can only take 4-4.5oz max at a time and he usually has to be watching his favorite cartoons to cooperate.
So obviously, we have a long road ahead of us and we're waiting for our evaluation at Children's Hospital Food Clinic which is scheduled for 2/28 to know exactly where we're going here but at the very least we know that Noah isn't suffering inside from effects of his reflux. The plan is to wean him from his Prevacid over the next 2-3 months, taking a quarter of his Prevacid solutab away each month until he doesn't take it at all. Wish us luck in this department because this might help with his digestion since Prevacid is a PPI (proton pump inhibitor) and takes away a lot of the acid that is used in the digestion process. He's taking probiotics to help offset this.

I will leave you with some favorite pictures from Noah's 1st Valentine's Day home:

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Meet Our Miracle

Noah Matthew was born on a rainy Winter day, Pearl Harbor Day to be exact, in 2009. We like to think it was Noah's way of warning us, a day that would live in "infamy", LOL! My pregnancy and Noah's birth was not like many other of his preemie friends. I had contracted H1N1 (Swine Flu) at 24 weeks and had to be put into an induced coma my first night after the ER because I was essentially already dying. Over the next 5 weeks I was on a ventilator, got a DVT (massive blood clot) from a line in groin, went into renal failure and eventually had to get a trach. As I began to wake up from being weaned from the paralytics, Noah started experiencing heart decelerations and the decision was made to deliver him via emergency c-section at 30 weeks. Noah spent 90 total days in the NICU mostly dealing with severe GERD, slow weight gain, ROP, anemia (2 transfusions), hernia repair surgery, and weaning off of oxygen. It was, for the most part, an uneventful stay but the post-traumatic stress I experienced in dealing with my own mortality and subsequent paralysis in my right leg/foot, made things that much more stressful. No longer was I the strong, independent and fully capable person I had been before. The first few days and weeks I held Noah, I was in a wheel chair or seated with a walker in front of me. How would I ever take care of this fragile human being who depended on me for his life, when I couldn't even take care of myself? Noah is doing wonderfully and is only slightly delayed in gross motor and is about to start the process for Speech Therapy. Other than his many gastrointestinal issues (reflux, horrible gag reflex, vomiting, constipation, inability to transition to purees/solids, and slow weight gain) he is doing remarkable.

If there is any doubt that God exists and is merciful, all you have to do is look at Noah and bear witness to his miracle work. With only 10% survival for the both of us in that first couple of weeks, we defied the odds, and it was only by the grace of God, many prayers, the wonderful care of doctors/specialists/nurses, and our determination to live. My hope is that this blog is a testament to how very grateful I am that I am able to kiss my husband at night and tuck my son in for bed. Amen!