Sunday in the CICU

We're back for another day hanging out with Samuel in the cardiac intensive care unit (CICU). We went to church this morning with the boys and my mom, and the boys got to go to their new rooms. They seemed to have a great time and no troubles with having new teachers and classmates. It's a lot of change all at once for Caleb and Joel -- especially with Caleb starting a two day a week preschool at church on Tuesday.

Caleb has been having a bit of a hard time lately -- just teary and worried. He does great during the day with my mom (of course! who wouldn't?!), but when B and I are home, the sadness leaks out. When we put him to bed 2 nights ago, he clung to my neck and sobbed. He stroked my head for about 10 minutes and just cried. When I asked him why he was sad, he said, "I don't know. But God knows why, right?" And last night when we put him to bed, he asked Bryan, "When you're not at the hospital, who's taking care of Samuel?" I think his baby brother is on his mind more than he lets on. He's only met him for about 3 minutes -- and that was the morning after he was born. Caleb and Joel colored some pictures for Samuel's little pod in the CICU, and I took out the camera to show Caleb where we hung them. Immediately Caleb wanted to know what all the machines were, what medicines Samuel is taking, and how he is doing. He wants to know his baby brother is well cared for. Caleb has such a sweet and tender heart.

Joel-bears seems the most unphased by our life changes in the last week. He is giggly, bouncey, silly, and full of fun. He loves his time with his Gab'm (the name my boys use for my mom), and he's learning to swim! My mom is taking the boys to the pool everyday, and Joel is being a brave little swimmer. We got home last night just before the boys' bedtime, and they were still at the pool. Joel and Caleb loved showing off their new skills. Joel does "punish" me for a few minutes when he first sees me in the morning or evening by withholding his hugs and greetings, but after a few minutes, he runs into my arms and loves on me. What wonderful boys we have!

As for Samuel, things seem pretty status quo today. He's having a little stretch where his blood pressure is low, but after some meds, it seems to be on the rise. He's on an absurd amount of medicine, and I can't help but think how unnatural it all is -- how he has so many artifical things in his system, and nothing that he's supposed to have (aka breastmilk). His bilirubin count is on the rise for the 3rd day in a row, but it's been small increments each day, and the "billy lights" have been gone for the last 3 days. Hopefully they won't have to come back. They turned his skin a greenish color, but today Samuel looks much better. His skin tone seems to be returning to its natural hue. And he's not so taped up today. I feel like I'm seeing the most of him I have since he came out of my womb. When we first arrived today, he was on his side, and I got to snuggle his little neck and back. It was the most exposed skin we've seen. I didn't have to avoid lines and tape. And Samuel finally got a bath yesterday, and he smells so good. It was a wonderful few minutes just burying my head in his neck and feeling like I actually got to cuddle him.

Bryan and I are hanging in there. We seem to go through hills and valleys of strength and weakness. I have started the last two days meditating on Isaiah 26:3, "You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you." If I keep my mind on the Lord and not on the future, I seem to stay peaceful and even joyful. But if I start to think about what's ahead, or how I can't hold him, or the "what-ifs," then I find I am anxious and shaky. Bryan and I were talking over lunch about how hard it is to imagine bringing Samuel home, and I told him how I have to stay in the now, or else I start to get impatient, frustrated, and overwhelmed. God gives us what we need for each moment, and I can't look ahead to 3 weeks from now and expect God to currently grant me the strength I will need then. I can't even look ahead to later this week and probable surgery and find the strength I will need to face those days. I have to walk moment by moment in God's grace.

There's a song we sing each day to Samuel that has been an encouragement to us through this whole process. We memorized it back in April when we first found out about Samuel's heart defect, and we sing it often with Caleb. It is called "Grace Upon Grace" by Sandra McCracken. Here are the lyrics:

In every station, new trials and troubles
call for more grace than I can afford.
Where can I go but to my dear Savior
for mercy that pours from boundless stores?

Grace upon grace, every sin repaired,
every void restored, you will find Him there.
In every turning He will prepare you
with grace upon grace.

He made a way for the fallen to rise
perfect in glory and sacrifice.
In sweet communion my need He supplies.
He saves and keeps and guards my life.

Grace upon grace, every sin repaired,
every void restored, you will find Him there.
In every turning He will prepare you
with grace upon grace.

To thee I run now with great expectation
to honor You with trust like a child.
My hopes and desires seek a new destination,
and all that You ask, Your grace will provide.

Grace upon grace, every sin repaired,
every void restored, you will find Him there.
In every turning He will prepare you
with grace upon grace.

Thank you for praying for us. We need it, and we truly feel uplifted by your prayers. Tomorrow will likely be a big information day. We suspect there will be another echo-cardiogram and some plans about the rest of the week -- i.e. when they plan to do surgery. Please be praying for the doctors to have great wisdom and clarity about Samuel's condition and the best course of action. We'll post what we discover. Again, THANK YOU for praying. Please, please continue. And may each of you find that God's grace provides all that He asks of you.