NICU Reunion

So, today, 4 months and 6 days after being discharged from the NICU, we took Liam to his very first NICU Reunion at the hospital he was born in. It was a bittersweet day. It was so nice to see the faces of the nurses, doctors, and even a very special social worker, who helped us through the first 74 days of Liam's life. We didn't get to see Liam's favorite nurse (and our's for that matter), though, but it was still a good time. Children of all ages and sizes and their parents/caregivers gathered together in a small area of the hospital to reminisce, eat, and be happy. I thought to myself, what a neat (and scary) thing - to know that all the children in attendance and MANY, MANY more have been through similar experiences to Liam and started those early days out in the NICU. It was also nice to see a few children and parents who were in there at the same time as Liam doing so well. Take one good look around a NICU or a NICU reunion and THEN tell me you don't believe in God! It is an amazing, altogether miraculous sight!

The bitter part? The bitter part was speaking with the nurses, who expected to hear Liam was doing so much better than when he was there and making strides toward normalcy...and not being able to tell them that. Perhaps I could've fibbed a little and just said "yeah, he's doing great" and left it at that. The truth is that he isn't doing better than he was when he was discharged. Aside from semi-consistent weight-gain, things haven't been heading in a more normal direction - quite the opposite.

I'm reminded every morning and every night what a special little boy I have when I draw up his medications - which now total 7 - and that's just the oral medications - he takes 3 more via the nebulizer, one of which is given 12 times per day. At one point, we were down to 4, total, and no breathing treatments. He's done numerous rounds of oral steroids in the last month and had a couple steroid shots (dexamethasone - remember the one that can cause learning delays...) to try to mature his lungs. He's up to between 1 and 1.5 liters of oxygen - up from 1/32 of a liter. I've left my "job" to be with him and ensure he's getting the best treatment he can get - while I wouldn't change it, it does hit me sometimes.

But, one look into my precious blond haired, blue eyed baby's face and it all becomes a distant nightmare. He has a way of making me forget all the tough times with a big grin and a half-laugh and the "talking" he's doing now. All of which, by the way, he is using right this very minute to try to "talk" Shane out of giving him the rest of his medications. He's also become a master escape artist - escaping from his nasal cannula, that is...that kid can pull off tape/tegaderm/dots like nobody's business! :)

Well, I'm off to snuggle with my little sweetheart before we hit the hay and start all over again tomorrow! A sincere THANK YOU is being sent out to everyone reading this who has taken time to pray for our little miracle in the last almost-7 months!