Wednesday, August 13, 2014

Full Feeds: 74 Days and Counting

Micah's been doing really well. Last week Hematology found a small clot in his left leg. I wasn't really surprised given that the nurses haven't been able to get blood pressure readings when the cuff is on that leg. He's on a two week blood thinning treatment to see if that will help.

He's finally at full feeds today! He's taking in 18mLs of breast milk per hour. Praise God! It felt like we'd never make it.

Now that he's at full feeds and has put on a bit of weight, the doctors want to begin pressure support trials this afternoon. A pressure support trial is when the vent settings are turned down as low as possible and they observe how Micah is able to maintain O2 saturation and expel CO2. Pray for good trials!

I'm pretty hopeful at this point. They already have the vent at minimal settings and he's been breathing above the rate per minute even when he's sleeping. The Fellow wanted to try to extubate on Friday but the Attending said to wait until Monday to ensure that he continues to gain weight. 

I'm anxious to get this tube out of Micah! It's causing his skin to break down inside his nose which makes him seriously agitated whenever the tube is moved or even slightly touched. He cries and cries, holds his breath, and his face becomes red like a tomato! When he gets this agitated the nurses (depending on their experience with Micah) tend to run straight for a dose of morphine to calm him down. When he's sedated he doesn't breathe as well on the vent. I hate these dumb cycles that seem to happen when we're waiting for a major milestone to happen.

I'm just really thankful that he's been progressing though. I think the next step will be learning how to eat again. Whenever we put a pacifier in his mouth he gags. He doesn't remember how to suck on it. If he can't handle a pacifier in his mouth, then his suck and swallow coordination will be probably be non existent. Who knows how long that'll take to fix. I just have to take it one day at a time, no matter how much I pray and wish for us all to be home together doing 'normal' family things.

Sometimes it's difficult to stay positive in the CICU. Yesterday one of our CICU friends lost their baby to CHD. This is the fourth loss we've seen in our 11 weeks here. Please pray that this family receives God's strength and comfort during this time. This family, and many others like them, has experienced one of my greatest fears. It's so unfair that these little angels are put in our lives just to fight CHD and be taken away so soon. Everyday is a fight for life with these children and the only thing we as parents can do is be there to provide support and advocate for them, which never seems like enough.

I love you so much Micah and I'm so thankful for each day we can be together on this earth.