Screw you throw-up!

We had to take Noah to the ER yesterday because he was vomiting every feed.  We think he may have caught what Mike and almost every other member of this family had the last couple weeks, a flu bug or virus that wreaks havoc for a couple days and then goes away.  Nonetheless, we can probably say good bye to the short-lived world of 20 lbs because he has not been eating well, understandably, and throwing up a lot.  Damn, I can't wait until we can move and I don't have to worry about all the germs.

1-Year Anniversary

A year ago today, on a rather cold and rainy afternoon, we brought our little peanut home after a very long and agonizing 3-month stay in the NICU at Sharp Mary Birch.  Thank you to all the doctors, nurses and specialist that made that day possible.  And a huge thank you to my husband Mike and my wonderful family for all the support you gave me, I don't think I would have made it out of there with my sanity intact without you.  And most importantly, I would like to give all glory to God.  Without his grace Noah and I wouldn't be here today to share our miraculous story with whoever is willing to hear it.  I made a promise to him upon waking up from my coma to share my love and gratitude for Him every chance I got and I am thankful that this blog is helping me do that today.  Amen!

Off to the Races!

Momma always warned me about those fast boys... should I be scared about how much trouble he's going to get in with his big cousin when he's off that push-toy?!

Entering the world of deuces!

So the last time Noah had a 2 at the start of his weight measurement was back in January of 2010 while he sat in an isolette in the NICU of Sharp Mary Birch Hospital.  I still can't believe the set of circumstances that brought us to the point where I had given birth to a 2lb 8.4oz  baby boy.  I still don't think the magnitude of everything registered to me in my just-came-out-of-a-coma haze when they told me that Noah was okay, that I was okay.  I do, however, remember how I felt the first time I held all 2 pounds of him in my arms that had to be propped up by numerous pillows because of my atrophied body and subsequent weakness.  Hearing his tiny little cry, seeing his tiny little hands and feet, looking into those big eyes and knowing what complete and perfect love was.  And today when the scale read out something with a 2 in front, I was reminded of that love and how Noah continually shows me what a strong and determined soul he is.  This journey, this path, that we walk on everyday can be so challenging.  But it's moments like this that make it all worth it.  I am so proud of my little boy.  He inspires me and reminds me of how blessed we are, everyday, and that is a gift that cannot be quantified.  I thank God everyday and pray for the ability, patience and promise to be the best mother I can be, now and always.  I love you Noah Matthew.

Feeding Clinic & Adenoidectomy Update

We've had a busy couple of last weeks with appointments.  First, I am happy to report that Noah made a full recovery from his adenoidectomy and the results have been amazing.  He no longer snores at night or sounds like he's struggling to breath in and out peacefully.  It also looks like he's tasting things a little better.  So we're very happy with our decision to proceed with that. We were even able to cancel his follow-up appointment with Dr. Magit because of how well he's doing, and well, because if we can avoid a germy office visit anywhere during RSV season we will.
And finally, something we had been looking forward to for a long time was our evaluation with Children's Hospital's Feeding Clinic this past Thursday.  Sufficed to say, we were very disappointed with the outcome.  Basically after they watched us feed Noah behind a double-sided mirror for approximately 45 minutes the Speech Pathologist, Gastroenterologist NP, OT, Nutritionist, and Feeding Behaviorist/Psychologist met with us afterward to tell us that we were basically doing everything right and that because of his good weight gain we just had to keep doing what we were doing.  Great, validation that we're doing the best with the circumstances we were dealt and Noah is following his own growth curve and will eventually 'catch-up'.  Not so great that we have to distract him every time he eats or feed him every two hours or deal with his constant gagging/vomiting.  Oh well, he's growing, be strong.  Believe me, I didn't have any false notion that going to this visit was going to be a totally life-changing thing.  That we would walk away with all the answers about why our son doesn't ever want to eat.  No.  What I had hoped was that a plan would be put in place, that they would collectively rally around us and say that they could help.  Instead, 'keep up the good work' and 'this is a very long process that will only get better with a lot of time'.  Well yeah, duh.  I still don't feel better but thanks for trying.  I still feel like we wasted 2 hours of our life having these strangers watch my poor son, and us for that matter, struggle with a life-sustaining activity that should be as simple as breathing.  It's just not a reality for us. I left feeling really defeated and a little sad.  Mostly sad because of this recurrent theme that repeats itself everyday of my life.  The thing that pops into my head after I repeat to myself just how blessed we are that Noah is even here and doing as well as he is.  It's a feeling of being cheated.  Of knowing what it's like to raise a child who is medically fragile.  Of being familiar with terms like RSV, vestibular stimulation, oral defensiveness, etc... When your child's life is measured in things like mL's of medication and ounces of weight gain.  It's a sense of loss because I feel like I can never really enjoy my baby's childhood when it's bogged down with so many fears of the unknown and devastating realities of what-if's.  I learned a long time ago to stop comparing my preemie to the only other world of I've ever known of full-termers.  I've learned to ignore people's ignorant comments or well-meaning advice about things that they have no clue about.  But I'm still here, waiting for the day to come where all these lonely feelings and worry will be a thing of the past but also knowing that that day may never come and I'll have to pick myself up off the ground and move forward because my son deserves nothing but my very best.    

Everyone Poops

We all knew the day was coming, we just didn't know who would be the winning recipient of Noah's prize.  Turns out it was only half-awarded to Mike.  Yup, that's right, Mike had the honors of being pooped on in the bath tub, sorta.  As I was preparing Noah's bath after a big poop and resulting puke from said poop, Mike decided to hold Noah on the ledge of the bath so he could watch the water level and bubbles rise.  Well, apparently Noah got a little too excited perched high above the tub and decided he wasn't done.  You heard it here first folks, Noah went poo poo on Mike!  Two little logs trickled down his hand and into the bathtub!  Man, that was a sight.  Noah, thank you for the endless hours of laughter!
We also had Noah's hair cut, only his second in his whole little life but this time instead of Tia Grace doing the clipping we went to Toon Cuts because of the last-minuteness.  That was his first and last time there and we'll file the experience under the tag: traumatic.  He cried the whole time and I fear we may have created a life-long fear of clippers.  The only upside, he looks like a cute little man now!
After his bath we decided to have a talk on the floor about said doo-doo and later broached the topic of bebe.  Don't get any ideas everyone, I think we're about to place a permanent "Closed" sign on mine and Mike's reproductive systems.  This whole experience of preemie parenthood will also be filed under tag: traumatic.

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: