"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Monday, August 9, 2010

August 9, 2010

I have about 5 minutes for a quick update (sorry it's been so long)! Benjamin has made some significant progress over the past week or so. He's off oxygen! He's been off since 7/31. He tends to drift a bit at times, but just when we think he may need the cannula back on he pops his saturation back up! We know when he has his major surgery he'll need to be intubated, and we'll start the process over again, but we're so proud of him... his doctors at Children's told us he would be on oxygen for a very long time. I don't know how many times I say he's amazing, but he truly is AMAZING!

He's taking about half of his total daily feed volume by bottle. This is huge!! He does have really bad reflux so sometimes what goes in comes right back out. But, the fact that he can do it is so promising. Remember how I said he was being tricked and they were slowly adding calories to his milk thinking he wouldn't catch on and notice the difference? Well, the little bugger caught on. Now he's getting straight breastmilk in the bottle and whatever he doesn't finish he'll get calories added to it and it'll go in by bolus or over the pump. What's unbelievable is he's still growing a lot, even without the added calories! We could never have dreamed this possible. He's actually over 8.5 pounds.

We finally have a bowel surgery date. He'll be going in on 8/26. Just a few weeks away. If he needs eye surgery (and we'll find out on Thursday), he'll stay at MGH and then probably go right to Children's. We have a rough couple of months ahead...

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