National Blood Donor Month

In honor of the brave souls who bare arms for our weakest, who dedicate their time and their veins to save those who don't have enough, thank you. Thank you to blood donors everywhere.

JAM & his sisters today.
This life made possible by blood donors.

This post (on PreemieBabies101) is in your honor.

You've saved my son's life more than once. When I was not able to give, you gave for him. You are heroes. Pass it on, encourage others to give.

(More on blood donations and preemies in this JAMmin' news piece.) 

JAM receives whole blood in preparation for surgery for NEC.

Yesterday was fun, tomorrow is big

This has been a crazy month -- full of packing and cleaning one house, unpacking in a new home, packing up my office at work and preparing to train my replacement, all peppered with neurology, ophthalmology, and neurosurgery appointments. In the midst of all this, J battled an ear infection, we coordinated new early intervention services, I spent hours on the phone with various specialists, we talked about possible seizures and sleep apnea, J lost weight (again), we transferred records, and I've been attending weekly training sessions at the NICU learning how to be a good parent-to-parent volunteer.

Yesterday was a fun break from it all. We got to say "thank you" to all the anonymous blood donors that helped save J's life. See? We got to be on TV.

As exciting as that is, tomorrow will be a bigger day. Tomorrow is a day I've been waiting for for months.

Tomorrow J is finally scoped. From both ends. Biopsies will be taken. His gut will be analyzed. In the end, this means that we might start to have answers. 

Jonathan hasn't gained a pound since I stopped giving him breast milk in late October/early November. He hasn't kept even a half a pound extra on him since then. About six weeks ago, after a few fantastic weeks where he consumed more calories than necessary for a kid his size and age, wasn't sick (for a change) and was on a new med to help with bacterial overgrowth in his gut, I was actually excited for his weigh-in. I was sure he'd FINALLY be 17 pounds. But instead? He'd lost weight. Back to 16 pounds 2 ounces. And I crumpled. A few weeks later, after the aforementioned ear infection and accompanying nausea, he was back down to 16 pounds even.

He's gained many inches, but no weight. His energy level during the day bounces about and causes me worry. I can count his ribs. We don't want this for him any more. We want answers. Tomorrow we might get a few. We want our kiddo to be a thriving child.

I am holding my breath in part because I know how this goes, and I know that despite the best intentions of everyone on Team JAM, this month may come and go and we may be no closer to actionable answers. And I know that if that happens, I will crumple into a heap in the corner. It's so hard to see him like this.

Jonathan 4 months ago.
(We won't share a picture of now, it's worse.)

A thanks to blood donors & better than a baby shower

A year ago my church hosted a blood drive for my son. In many ways, it was better than the traditional church shower. (Let's be honest - as a third child, he wasn't getting a church shower anyway.)

The blood drive was the idea of another preemie mom. Her teenage twins had been in the NICU, and every time I talked to her or her husband about Jonathan's stay, it took them back to early life with their twins. Perhaps I shouldn't have been surprised when she asked if she could host a drive in his honor, but I was. It was so perfect, I wouldn't have thought of it, and it was just the sort of gift I needed as his mom. I cried. For real.

See, despite all the prayers and well-wishes and support (and we had a ton) the truth is, I felt a bit alone after we'd brought him home. It didn't help that now we were in isolation and I didn't see people as much, but it was more than that. While every day of his life was a celebration in our community, it also felt like he'd never been fully celebrated. That doesn't make sense, I know, but there was no huge excited exclamation of "the baby is HERE!" We never had that sort of celebration. He came in to this world slowly, bit by bit, organ by fragile organ, on wings and prayers the whole way. Things had been so touch-and-go that no one knew when or how to celebrate. Gifts in the hospital (the normal spot for such celebration) seemed out of place. And then after that it was too late to make any sense. Once he came home I really wanted to host a party to scream "We've MADE IT! We have an amazing baby boy!" But we couldn't host a party because, well, he was home and fragile and we were in cold and flu season. Someone had put an "It's a BOY!" balloon on our mailbox the day he came home. I'm not sure who it was, but that too touched me. It's a boy. We can celebrate now.

In the end, I can't think of a better way to celebrate his life than to help make life possible for other preemies. This mom knew that.  She knew as most NICU parents know, that blood is necessary to sustain these little ones.

The drive gave me an excuse to finish up his baby scrapbook, so it could be displayed at the recovery table. When I went to give blood, I was surprised that the blood drive personnel weren't very interested in hearing about the baby behind the drive. I was introduced to them as the mom of the baby, but still, only nods, no questions.

Turns out that most hosted drives that they had worked were hosted in honor of those who had passed. There was a little shock when I told them how well he was doing at home. "He's still alive?"

I think we need more drives in honor of those who have survived, and with gratitude to those who made it possible.  And we need to send out more thanks.

So, here:

Next week Tuesday I'm taking my lunch break to save a life. I now have a name and face to go with that donation, and that keeps me giving, as long as I am able.  Thank you donors!

P.S. I just heard this morning that Michigan Blood published a story about JAM and me. Read it here. I hope it inspires others to give.

Day 11 & 376 of J's life: Here I raise my ebenezer

A year ago today I wrote the following on our care page for Jonathan:

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.

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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.

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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.