Wednesday, December 22, 2010

Down the road the sun is shining..

It's been a rough couple of days. I tried not to get my hopes up, but I did, and no one expected there to be any setbacks. Yesterday Evan had his swallow study, it's routine, and since he was doing so well feeding, nobody bothered to mention a possibility of something being wrong. The speech therapist tried mixing milk with up to 5ccs of thickener per 30ccs of milk, and Evan was still aspirating on it. Just a little bit was going down the wrong pipe. So what did that mean? No milk by mouth. I was so upset because I stayed the night with Evan and he took over 50ccs his last two feeds before the swallow study, and the last time only had to have 12ccs down the ng tube. It was the most he had ever taken. It was very disappointing, but I know this is best for him. I'm glad they found out now and not at home. An ENT Dr came and looked at Evan's vocal cords today, he "thinks" the left one is partially paralyzed; it's not moving as well as the right one is. They will check again in a year to see if it recovers on his own. Evan will have to wait 3 months before they redo the swallow study, and if he passes they will let him learn to eat again. Until then, he will be fed thru a g-tube. With this whole new development, we obviously are no longer being discharged this Friday. If all goes well next week, we are looking at being discharged Friday 12/30. Atleast we will be home for New Years.

Today we got Evan's pulse ox monitor he will have to use at home. At first I was pissed, really pissed, at how heavy this machine is. It's only like 8 inches long, but it's bulky, you tell me how I'm supposed to carry a 9 pound baby AND this 3.5 pound box with a handle too small for my tiny hand to fit in. Ridiculous. But then I started reading the manual and testing it out, and I am actually relieved to be bringing it home with us. It monitors Evan's O2 Saturations and his heart rate. His O2 sats have to be 75-90 and heart beat 120-180, and if they ever leave that range, the thing alarms like crazy. It will definitely give me peace of mind while he's sleeping.

Tomorrow morning they are going to do a scan of Evan's upper GI, just to check the anatomy. Then we will just be waiting til Monday when they place the g-tube in. They are putting a peg tube in first, which I'm not thrilled about, but in 6-8 weeks they will replace it with a button-like tube, which will be easier to deal with.

I absolutely love holding Evan, he is just so precious and loves to stare at me :) And I love how babies don't care how awful you sound when you sing.. lol You can see by his picture Evan is finally wearing clothes! He can only wear outfits that button all the way down, gotta have places for the wires to come out, so we are limited on what he can wear, but we're making it work. It sucks how things can change in an instance.. But this is part of having a heart baby. All that matters is having him in my arms & feeling his tiny heart beating.. <3

1 comment:

  1. Hang in there. There are a lot of "unexpected" things that come up. I'm thinking of you and praying for you and Evan.