Sweet Sebastian

As of today, we THINK we finally have all of our Sweet Sebastian's little "kinks" worked out and he will hopefully be on his way to climbing up the growth chart! We went to the doc for a weigh in today and he's gained nearly 1lb in 3 weeks! Yea!

Since coming into this world post-term and a healthy 8lb. 13 oz., he has been plagued with one little problem after the next. We are incredibly thankful none have been life threatening but we certainly haven't been able to relax and enjoy our infant. It seems as though there has constantly been something we are trying to solve and fix.

• Reflux: after trying and failing with Zantac, Prevacid gave him some relief


• Viral Infection: a fever landed him in LeBohneur to be poked & prodded way too much


• Upper GI: still having reflux issues - a 1/2 day test at LeBohneur requiring him to drink 2 bottles of barium and subsequently scream in pain until he pooped a white brick! We double his dosing of Prevacid.


• Laryngomalacia: A.K.A. Soft larynx which results in loud, squeaky breathing...particularly when he's sleeping


• Milk Allergy: A horrible rash on his face & body told us it wasn't just the reflux causing him irritation. Now, the ridiculously expensive Alimentum keeps him happy and rash free!


• Ezcema: Oops! Guess the milk wasn't the only thing causing him to break out. Now, hyrdocortizone cream and Eucerin are the only products that can touch his skin. No sweet Noodle & Boo smelling baby! :(


• Inadequate weight gain: We thought the formula fix would cure all but no such luck - the doc labeled him "failing to thrive" and now it's back to the quest of finding what is wrong.


• GI consult: After two visits, Dr. Whitworth increases his calories per serving and threatens the possibility of an even more expensive and more hypoallergenic formula.


• ENT consult: Poor baby has to get scoped & officially diagnosed with severe laryngomalacia. We learn here that this condition and his slow appetite are probably related.


• Modified Swallow Test: Finally a test that gives you results instantly! We had this test yesterday (another trip to LeBohneur) and it showed he has what is called "penetration." Meaning: his airway flap doesn't close in time when he eats letting some formula go down the wrong pipe. This is probably due to the acid reflux eating away at the sensation on his esophagus. The hope is that the problem will fix itself as he starts sitting up, eating more solid food, the larynx hardens and the esophagus regains normal feeling....probably around 18 months.


• Simply Thick: Hopefully, the last bullet point to our little guy's medical history. Simply Thick is thickening gel added to his formula to help him swallow easier. The slower flow gives his airway flap more time to close. (Of course our insurance doesn't cover it.) After just 1 1/2 days, we have already seen minor improvements in his eating. Hopefully, he will consistently break the 20 oz. per day barrier soon!

After all the trips to Memphis, stress on baby, stress on us and specialty co-pays, we are so incredibly grateful God has taken care of our baby long enough for us to catch up. Thank you to everyone who has listened to me cryptically complain and ask for prayer about what we've been going through. It's all been so vague & unclear until now - it's as if a light has flipped on and we FINALLY can see what's going on.

A trip to LeBohneur is all it takes to make you count your blessings. I saw a little boy hooked up on an I.V. walking the halls with his grandmother and having to use the slants in the hospital floor as a make-believe race track. Now that's heart breaking.

P.S.

Thank you God for doctors and for the freedom of choice in choosing one!