Friday, April 13, 2012

Goodbye CICU

Today was a long day, we had a long night last night. Bryt was up every 3 hours to feed the little monster. She is amazing. This morning was awesome, he had made a lot of progress and we felt comfortable going for a longer lunch. We walked a couple blocks down to Chipotle and had a nice chat. It was nice to be out in the sun and not be surrounded by blue scrubs and alarms.  When we got back from lunch the nurses had him unhooked from just about everything and told us we were heading upstairs. We weaved his crib in and out of some secret hallways and made it an elevator. We took it up to the 9th floor and wheeled him to our new room. Hopefully this is the last room we will be in. Poor little guy has already been in two hospitals and been bounced around to 6 different rooms. We have a pretty cool view from way up here. This unit is a little different than the ICU. We have an actual door, and we have a bathroom and shower of our own.  The nurses have 3-4 kids each so they are not really watching his monitors as closely. One of our alarms was going off for about 5 minutes before anyone came to look at it.
Michael is off his fortified stuff, the lactation lady said he is looking good and hasn't really lost that much weight, only about 4% lighter than birth weight. So that is exciting, cause he doesn't seem to like the fortified stuff. He also has a big towel wrapped around his arm with the IV in it.  We didn't notice it until we went to change him, it looks like he just has a big club arm. I was calling him Mega Mike, because he looks like MegaMan. He was squirming around and his Club arm got caught on some of his belly button stitches and they started to bleed. It wasn't a lot of blood, but we did have the nurse check it. We all think it looks ok.  It also looks like he might have some irritated skin from his diaper so we ordered some cream for him. Overall he is doing really good, we are told by every nurse we have that he is the cutest baby in the unit.
We also got to see Zoey again today, my sister brought her and her cousin Ryan to the hospital to eat with us. I was running around the halls with the two of them chasing me and hiding from them. They were having a blast trying to keep up. Zoey fell a little behind and then vomited all over the floor. I went to pick her up then she puked a bit on me. Then Bryt went to pick her up and Zoey started trying to lick her cheek...What is she learning without us?... It was fun seeing her and hard to say goodbye as always. She was having a really rough time so I rode around in the car with them for 10 minutes hoping she would fall asleep. She never did and I had to leave her crying again. That has got to be one of the hardest parts of this. We both miss her and can not wait to have our little family back at home. She still has no clue about Michael and still isn't allowed to come to his room to visit. We tried to show her videos and pictures but I don't think she really gets it.

Moving Forward

Michael is doing great today! Bryt has been nursing him every 3 hours and he is feeding quite well.  They took out his feeding tube and asked us to replace 3 feedings a day with some fortified breast milk. This is Bryttney's milk, with some extra calories, protein, calcium, and fat in it. He is still not getting all the nutrients he needs and doesn't appear to be gaining weight the way they want him to. Based on our experience with the fortified stuff so far, he doesn't seem to like it. Hopefully he eats it now that he has an appetite.
They also took out his picc line this morning. This was a central line going into his left arm and going straight to his heart. They were using it to give him medicine that needed to mix with the blood quickly.  It's exciting they took it out because they have a high risk of infection. He does have a little skin irritation where all this stuff was taped onto him, but he looks really good.  We are most likely going to be moving upstairs this afternoon. They just need to clear out some of their rooms up there. Bryt and I are so Proud of him, he is such a strong little guy. These kids are amazing, he has already endured so much.
We also got to talk to the social worker today, she brought us some flyers and print outs for support groups and resources. It's so crazy to think we are part of this whole other world most people overlook. We now have a son living with congenital heart disease, he will have it the rest of his life.  We have been so warmly welcomed  and are already building relationships in this new community. There are kids his age that have already had heart transplants. It's a crazy and awesome thing to be a part of. These families are amazing. I think it's time I stop being so selfish with my life. If Michael were born with a normal healthy heart I probably would have continued my normal life, oblivious to all these amazing people living around me. Thank you all for your wonderful support, this has been a roller coaster ride so far and I'm sure there is more to come.  Bryttney and I are so grateful to have such amazing families and friends. You are all wonderful.