Sunday, December 14, 2008

More Catch-up

Okay, so just to keep you new folks up to speed, let me tell you a little more about my son. He was born on 4/4/08, and he was immediately placed on the ventilator, and that's where he hung out for 104 days. He graduated to CPAP after a round of steroids, then soon onto the heated cannula. We yo-yoed back and forth a few times, and discharged on 1 liter of flow on a regular cannula after a second round of steroids. He took bottles for a while, but we eventually discontinued the bottles after he got his g-tube and now eat baby food with a spoon instead, and do continuous feeds at night. He had his PDA ligated at 29 days of life and then went on to have ROP surgery, bilateral inguinal hernia repair (and let me add here that the folks at Vandy said they were the biggest they had ever seen!), and g-tube placement. He has an ASD (atrial septal defect), which is a hole in his heart, and may require surgery for that down the road, but not at this time. As far as diagnoses go... We've got extreme prematurity,ELBW (extremely low birth weight), CLD (chronic lung disease), BPD (bronchopulmonary dysplasia), pulmonary hypertension, history of complete renal failure (history of just about everything at some point or another!), inadequate pons and cerebellum, and absent septum pellucidem. I'm sure I'm missing something, but that's plenty for now.

As far as drugs, we discharged on Pulmicort, Viagra, Digoxin, Lasix, iron, and potassium. Not too shabby, huh?

So now, to shift gears, let me tell you how awesome he is. He's now 4 and a half months corrected age, and is functioning at anywhere from 2-4 months in all his developmental levels. He's working on head and trunk control, he tracks slowly, but he tracks, he smiles interactively, he can shift items from hand to hand, he loves to eat and will take any flavor or texture (except my breast milk, of course. Stinker.) He holds his paci and tries to roll over on his own. He's working on sitting up with assistance, and would rather sit than lie down anyday.

So many of his delays can be blamed on environmental elements, such as lying in a bed flat on a vent for over 100 days when he should have been curled up in a ball in my belly. It took forever to do hand to mouth, but his muscles were too short in some places and too long in others, simply due to positional reasons. We're expecting to have some obstacles to overcome, but we do therapy constantly in our house and he WILL overcome whatever obstacles there are. He's already overcome so many!

And now it's time for his breakfast. Cereal +22 cal and some sweet potatoes and corn. Yum!


Oh, and btw, just read back over this and noticed all the run-on sentences. Sooo not worried about them today, sorry! You are forced to translate!

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