Thursday, August 28, 2014

From CICU to HKU!!!

I am on cloud nine right now! Micah has left the CICU and is in the step down unit where he will hopefully learn how to drink from a bottle, be weaned off his nasal cannula and I will learn how to care for him when we go home... Home!!

HOME!!! I try not to get too excited but it's just within reach!

Last day in our CICU room!

New room in the HKU (step down unit)

With a view of the Basilica of the National Shrine of the Immaculate Conception off in the distance!

Micah is so amazing and I truly thank everyone for their constant prayers to our Heavenly Father. Micah is my miracle baby. He survived several bouts of dangerously low sats, open heart surgery, CPR, and ECMO. I know he has several more battles to fight, but I've learned that I must rejoice in the present and give my worries about the future to God.

I wasn't sure if we'd need help with medical expenses but we're starting to receive medical bills from Micah's labs and his many specialists during his 13+ weeks in the hospital. I am so appreciative of your continued prayers but if you would also like to donate, my beautiful friend Brandy set up a site for donations:

Thank you again everyone for letting me and Ray continue to share Micah's journey with you. The support our family has received amazes me everyday.

Monday, August 18, 2014


I am so thrilled about today! Micah was extubated around 11:00am and he's done such a fabulous job all day! I pray he keeps it up. Here are a bunch of pictures :)

Micah immediately after being extubated.

Family photo, missing Little D though!

Napping in my arms. SO SWEET!

Bath time!!!! My first time helping wash Micah with actual baby soap!!

Fauxhawk during bath time :)

Fell asleep during tummy time after his bath.

It's so incredible to see him do normal baby things, like sneezing, hearing his (scratchy) voice cry, getting a bath, and sucking his pacifier!! YES! He is sucking his pacifier! I'm totally amazed at today's events. He's breathing like a champ and sucking like a champ. 

Good job, Micah. We're really proud of you!

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.