Tuesday, August 9, 2011

A Room with a View

Meet Mac.

Well, that is a little outdated now.

Now, he's fat. He has wrist rolls and neck rolls and a double chin and dimples on any and all joints.

And his head is bigger.

And he has 3 tubes coming off of him instead of 13. It's much easier to pull in and out of bed to snuggle him and doesn't require three people to do so.

And he lives in a Robbed-the Convenience-Store-looking-Jail-Crib,

instead of a Wrath-of-Khan-looking-Spock-Coffin.

He cries now, and grunts, and does the baby yawn noise.  He opens his eyes and interacts.  He communicates happiness and displeasure.  He wears cute onesies, which is good because I have about 150.

He now weighs five pounds and breathes all on his own.  Okay, mostly on his own.  He is only on 1.5 liters of air at 25-30% O2, which is a jump from where he was six weeks ago, which was intubated. Hooray!

He loves his bath.

And, he was moved from the high maintenance side of the NICU to Nursery B, which is where the bigger babies are, which means he is closer to going home.  Not only that, but thanks to a nurse whom we love, and who obviously loves us, he now has a room with a view (thanks Mary!).

Ignore the rooftop and focus on the mountains and the temple.  The rooftop has it's purpose, but is not where we should focus.  Can you see the analogy?

After he finished his round of antibiotics and started feeling better, he improved rapidly.  And now that there isn't so much air blowing into his nose, he is able to feed orally.  So, we started nursing last week, which is really exciting.  It was a bit rough at first, due to a disparity between the size of his mouth and the size of my...well, you get the picture. Once we found a breast shield that was small enough for him to latch on, though, he did remarkably well and is continuing to improve.  This is a huge step toward going home sweet home.  We still have our hurdles though.

Because he has had to have so many blood transfusions, his bone marrow has gotten lazy and has never learned to produce hemoglobin properly.  It should step up here in the next little bit, but in the meantime, he is anemic and that makes him feel a bit poorly.  We have to have that straightened out before they will release us to the world.

Lastly, his eyes.  He was diagnosed two weeks ago with stage one retinopathy of prematurity, which is a problem with the way that the vessels in the eyes grow into the retina.  This happens as a result of swingy O2 levels, crummy lungs, high oxygen saturation, transfusions, and basically everything he has done or had.  Last week, they discovered it had progressed to stage two.  Stage three requires laser surgery to correct.  It is possible that it will resolve itself, but he is a high risk baby for needing the surgery.  It will save most of his vision, but destroys the peripheral vision.  We feel blessed to live in a time when it is possible for him to keep his sight at all though.  For many years after they got to a point that they could save preemies with supplemental oxygen, many of them lost their sight altogether as a result of this disease.  His next check up is tomorrow and we are praying that his eyes will be protected.  Without peripheral vision, he can't ride a motorcycle.  Poor boy!

Otherwise, life flows along.  He is making progress and we are so grateful for the amazing docs, nurses, RTs, and other staff at UVRMC. They have been fabulous.  If you have to have a micro-preemie, this is the place to have him!