July 28, 2012
The good: It looks like J will be able to complete the drug therapy [to close the PDA] today. A look at his heart tomorrow will tell us if it worked. If all goes well, he will be able to resume feedings tomorrow.
The not so good: He's depending more and more on the machine to breath for him. His forced breaths per minute is up (from 30 to 45), he's "riding the vent" too often -- which means too much of the time he relies entirely on forced breaths from the vent to sustain him and he's not breathing much on his own. Over the last few days his oxygen level on the vent has steadily gone up (from 25 -- or just above regular air saturation -- four days ago to mid-60s today). He hasn't maxed out the amount of oxygen he can get from the machine, but it's not so cool that this number has to keep going up. They are tweaking his TPN (his IV nutrition solution) in hopes that by making it less base of a solution, he'll breath better. (Who knew?)
Oh, also he will get another blood transfusion today for low red blood count in his blood.
These days are hard. It's easy to look at a peaceful baby sleeping in his crib and know that he's doing exactly what needs to be done to thrive. When he has hard days, though, I'm reminded of my own helplessness. He is too young for kangaroo (or skin-to-skin) care -- his skin is too fragile and his neurological system is not well developed. I can't yet hold him and have that soothe him. I want to help him relax, but there's nothing I can do.
Today he is (gestationally) 25 weeks. Fifteen weeks to go. This is starting to feel like a long road.
To end on a positive note, K & E finally got to meet their little brother today! They've been battling a cold and so weren't able to hang out with him until today. E's thinks he is the cutest and littlest baby she's ever seen. K laughed as she looked at him, "He can't speak yet! He can't even say 'goo-goo, ga-ga'" They both seem to really like him.
Back to today, July 28 2013, a year later -- a spiritual note
I'm about to get church-y. (You've been warned.)
Our whole family went to church this morning. Jonathan ate his whole bottle while the congregation sang songs. No spitting up, no needing a break even (except to burp). And I'd put a little extra in, so he must have been hungry. A full five ounces down, like a normal baby. Then he went into Ms. Susan's arms. She's one of a few surrogate grandmothers / aunts in our area. He slept on her shoulder for the service. I love it that he can be in church with us. As my daughters say, "It's almost like he's a normal baby now. He's not a preemie anymore, is he momma?"
The sermon was pretty good. Pastor Nick is talking about psalms. Today he looked at psalms of praise, and he used Psalm 111. He talked about the Israelites in exile. How they tended to forget God, in spite of all the signs he performed among them. That brought him to Psalm 111 - a reminder that God is worthy of praise. He reminded us of God's goodness and steadfastness -- even in his justice and anger. And he reminded us about the tradition of an ebenezer (not Scrooge) -- a "stone of help" set up to remind us of God's great works.
I think of the following hymn when I hear ebenezer:
Come thou fount of every blessing.
tune my heart to sing thy grace;
streams of mercy never ceasing
call for songs of loudest praise
Teach me some melodious sonnet,
sung by flaming tounge above
praise the mount - I'm fixed upon it -
mount of God's redeeming love.
Here I raise my ebenezer
Hither by thy help I've come
and I hope by thy good pleasure
safely to arrive at home
Jesus sought me when a stranger
wandering from the fold of God;
He, to rescue me from danger,
interposed his precious blood.
(or in some versions: "bought me with his precious blood.")
Apparently Pastor Nick thinks of this song, too, because there, half way through the sermon, he made us all stand up and sing it. Being a NICU parent forever shades the way you see the world. And even well known songs like this have put me to tears in the past, because of baby J. I didn't cry this sermon, but down the row Ms. Susan, with Jonathan snuggled in her shoulder, she choked up a bit. (I guess it's not just NICU parents then, after all.)
No matter what the outcome of last year had been, God would be worthy of our praise. He's God. But beyond that we knew that he knew and loved our son. We knew he heard our groaning. Prayers surrounded us. He walked with us. That made all the difference.
But that didn't make Jonathan's path easy or short. You'll see more as his story unfolds here. The next month will be very hard. And those hard days will leave Jonathan scarred. Still, God is worthy of praise.
When the time comes that I finally leave Jonathan in nursery -- probably in about a year -- you church friends will see that he is a scarred baby. He has about seven easily visible scars, not counting the many that only an ophthalmologist can see.
When you see those scars - when you pick him up and his shirt goes above his belly button, or when he's wearing shorts and you see one above his knee (a failed attempt at a central line placement), or when he is swimming in the lake at a church camping trip - don't be sorry. Those days for sorrow have passed and are gone. The scars are his ebenezers. They are our reminder - God helps.
Doctors were given skills and wisdom to know when to perform and how to save his life. When things looked the worst, when his kidneys failed or his bowels stopped working (yes, my biggest fear before birth happens to J) -- people prayed, and things started to turn around. Not by our works, but by God's grace.
The pastor today encouraged us to share the ways in which God has blessed us, to raise our own ebenezers. In a sense, that is what this blog does.
It's not that God makes our roads easy, but God walks with us in our troubled times. God still rescues, and God still heals.
This is my praise for today. Thanks for reading.