Apr 8, 2015

He's Okay

So last month I ran to the blog to tell you all about our VLCAD news. I just couldn't wait! If you missed the initial blog post about Lincoln's VLCAD you can read it here. If you missed last Tuesday's post you can read it here.

I really want to say it again:

Praise Jesus!

We are so very glad, so very thankful that Lincoln's tests came back negative for VLCAD. And for those of you who have been asking questions or who would like details, this one's for you.

So Lincoln's initial newborn screening was elevated for VLCAD. His second newborn screening was possibly elevated for VLCAD, but that wasn't explained very clearly to us.

We were sent to Dallas to have a DNA blood test completed. That test showed that Lincoln had one genetic mutation that has been identified as a VLCAD gene mutation. So we know that Lincoln was at least a carrier of the VLCAD gene.

Apparently, or this is how it was explained to us, there are other genetic mutations that can cause VLCAD that haven't been so clearly identified yet. If the DNA blood test identified one known mutation, there was a possibility that Lincoln had another unidentified mutation that would cause him to not simply be a carrier with one gene, but be a symptomatic kiddo with VLCAD with two genes.

Did I lose anyone yet?

So about 8 weeks ago Lincoln had a skin biopsy done. The cells were grown in a lab and then they were tested for their metabolic reactions. This test would tell us exactly how Lincoln's body was reacting to food.

Since Lincoln was born we'd been feeding him every 2.5 or 3.5 hours. So we didn't know what his body would do in times of fasting. It's not quite safe to starve a baby to see how they react if the reaction could cause a number of horrible outcomes. So they run that test on the biopsied cells to be safe.

The results of the biopsy are the results we received last month.

Lincoln's cells responded as a carrier of VLCAD should. His cells did not respond like a person's cells with actual VLCAD.

When the lady called, again I knew who she was. She quickly told me Lincoln's results and I couldn't believe it. I kept asking,
"are there more tests?"
"are there more follow up visits?"
"if there anything we still need to monitor?"

and her answer was always "no."

She told me it was all over. We'd never see them again in their Dallas office for Lincoln and I could even rip up the scary emergency protocol letter they'd given us.

After asking all of my questions a second time I finally let her off the phone.

And I looked down at my little boy who was asleep in my arms.

He's okay.

He's more than okay, he's healthy.

And then I looked up to the God above and I thanked him. I praised his name.

Lincoln soon woke up and we spent the next hour singing praises to Jesus and dancing around. Really. Singing praise songs and dancing and smiling with my little boy in my arms.

A weight was lifted. The constant need to wonder if he needed more to eat. The constant awareness of the timing of the last feed and the countdown until the next one was needed. The constant setting of alarms at night, hoping that somehow the power wouldn't go out or the clock wouldn't malfunction because if it did I could only expect the worst.

I was lucky that I did not carry that weight alone. Not only did I have my husband and my friends and family (and my iPhone app), but most of all: my God. The one who carries my burdens, who holds the world, including our little Lincoln, in his hands.

And so the dancing and singing began.

But I know that there are mommas out there who didn't get the same call I did. I know there are mommas out there whose kiddos do have VLCAD, who still carry the weight. I know there are mommas who still wait the results of all the testing, wondering.

So today, I pray for those mommas. I pray for those kiddos. I pray for the return of our Lord and for a world without pain, but until then: I pray for the blessing of suffering to be apparent in their lives. I pray that they know the Lord. And I pray that their suffering is not lost.

But today, I rejoice. After rejoicing in suffering, I now rejoice in relief.

My little one, he's okay.

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