September 30, 2009

Sorry to update this blog so slowly lately. Shannon and I are burning the candle at both ends and we are extremely tired. Gabe has been doing very well and he has just been having little ups and downs. He has been doing very well with his ventilator, requiring less and less pressure as well as a slower respiratory rate. He has also been breathing on room air and not requiring any supplemental oxygen. Woohoo! Every once in a while he will get worked up and require a little more oxygen and pressure. Then he will relax and we will be able to turn it down. Gabe's Albumin level has gotten a little low lately which is requiring them to give him some more blood products to replenish what is lost. His chest tubes were slowing down substantially, down to about 10cc per side in a 24 hour period. That was down from almost 150cc per side last week. Unfortunately his chest tubes have begun to put out a little more, he's up to about 100cc total today. They told us this was going to take months and we would be going up and down, so this is to be expected.
Gabe has been spending more and more time on his tummy lately, which he actually likes. We love seeing his little back and his cute little no butt. His arm stretches are getting easier and easier each time we do them. Yesterday Gabe was upset and was moving his arms and legs more than I have ever seen them move. Even though he was upset, I was happy to see him be moving so much. Nurse "L" made my day when she let me hold him for three whole hours! It was so nice to hold my little man and be so close to him. He is even cuter when you hold him. I can't wait until we can just walk into the NICU and just pick him up and hold him like the other parents get to do. All in time.
Gabe had an eye exam today to check out the structure of his eyes. He definately did not enjoy this procedure. First they dialate his eyes using eyedrops. Then they use some sort of torture tool to hold his eyelids open as a guy with a crazy microscope on a helmet looks into his eyes. Poor little guy! The good news is that everything looked normal and they didn't find any of the signs that they can see with kids that have Noonans Syndrome. Which we will take as a good thing.
Please continue to keep us in your prayers and thoughts.