Five AM

I continue to work on Lincoln's birth story, but it may be a work in progress for the next few weeks or months. I also am continuing to use the month of January to seek the Lord and to live and to love and to write the overflow of my heart. So yes, I'm jumping a little bit ahead sharing this post with you. But we wanted to share as we ask for your prayers, and we wanted you to be able to take this journey with us so that when we see the glory of the Lord so clearly it may be shared with you and yours.

January 20, 2014

My day started at 5:00am.

Technically I guess the first time I woke "today" was 2:00am, but I don't really count middle of the night feedings as the morning or the day starting.

Our day started early today as we headed to Dallas for little Lincoln's skin biopsy.

Yep.

Skin biopsy. You read it right.

Many of you know that we have a wonderfully healthy, surely chunky, Michelin-Man of a baby boy named Lincoln. But what many of you don't know is that our little guy may have a disorder with a name longer than his: very long-chain acyl-coA dehydrogenase deficiency or VLCAD for short.

Back when we brought Lincoln home from the hospital in November I got a call a few days later about our Newborn Screening. The nurse mentioned that 'a few numbers were high' so they were required by the state to run the screening again. All it meant at that time was that Lincoln's two week newborn appointment would be moved up to a one week appointment, and it was convenient for us because we were bringing him in for a weight check anyway.

At that appointment they drew blood and sent it off to the state again for a second Newborn Screening. The pediatrician told us about the 'high numbers' on the screen and reassured us that although he'd never had a patient with this disorder before, he would read everything he needed to if it turned out Lincoln had it.

They took the blood and they gave us a name for a metabolic disorder that at least I could pronounce. As a Registered Dietitian I knew what acyl-coA was and I explained it all to Kyle as we drove home. We talked about how if Lincoln did have VLCAD at least he had the right nerdy dietitian mom for it. Almost as if God had me fall in love with nutrition so that I could take care of our little boy someday.

They gave us a name and they gave us one instruction; we could go no longer than 2.5 hours between feedings, even at night. So as we tried to figure out schedules and newborns and tried our best to get sleep, we set an alarm to wake us up, just in case Lincoln didn't wake us first.

A couple weeks went by and we returned to the pediatrician for the results of the second Newborn Screening. It was then that our pediatrician told us about the less than remarkable results. As in, they didn't really seem to indicate any type of disease or disorder. The pediatrician went on to say that he had even called the state geneticist who reviews the screenings and that really there was no need to be alarmed.

He told us we still needed to meet with a geneticist in Dallas to be sure, but mostly it was a formality. He even told us we could sleep and let Lincoln sleep, and we did. That night Lincoln slept for five hours and we realized how nice it was to get just a few more hours of sleep.

After that night, Lincoln, like many newborns woke about every two to three hours on his own and we were back in the world of sleep-deprived parents but relieved we no longer needed to wake him. And then we waited. We waited for the call from the doctor in Dallas, the geneticist who was simply 'checking the box' to make everything formal.

But that's not how it turned out.

They called, we got an appointment on their December schedule, and we packed our car to make the two hour drive to Dallas. I fed Lincoln in the parking lot when we arrived and then we found our way to the elevator and over to the Genetics Clinic.

I don't think I quite realized until they kept saying "Genetics Clinic" over and over again that this disorder was genetic; that it came from me or Kyle. But then we walked in they asked us a number of questions and a genetic counselor met with us. I had always assumed that genetic counselors either told people with high probability of genetic disease to avoid having kids or helped the rich and famous figure out who to marry to make pretty babies. But she was great, she explained VLCAD to us, she explained the testing to us, she explained the finances and the insurance to us. And then she mapped our family trees and asked "is there any chance you two could be related?" And Kyle and I looked at each other and answered a quick no, and she assured us that she didn't think so, but that she was required to ask. It gave us a little laughter in a questionnaire that really does remind you that if your son has this disease, it's more than likely because you 'gave it to him.'

But they drew more blood that day and they sent it off to a lab for DNA testing. With VLCAD they first looked at certain levels in Lincoln's blood on the Newborn Screen. Since the labs were elevated, they were now running a DNA test. VLCAD is a genetic disease but it's a recessive disease, meaning that both Kyle and I would have to at least be a carrier of that disease and we would have to both pass the abnormal VLCAD gene to Lincoln for him to have VLCAD. So they tested his DNA.

The geneticist had informed us of all the options for results of the DNA test. If the test came back with no genetic abnormalities then Lincoln surely did not have VLCAD, the Newborn Screening was just a fluke, a false positive. If the test came back with two abnormalities then Lincoln would be officially diagnosed with VLCAD and we'd begin talking about treatment options. Two abnormalities would indicate that Lincoln did in fact get both an abnormal gene from Kyle and an abnormal gene from me.

But if they only found one abnormality it would be a little more complicated. The geneticist explained that there was a ten percent error rate on the DNA test. Meaning that if they found only one VLCAD abnormality, there could be a chance that a second abnormality was present that hadn't yet been identified as a VLCAD abnormality. This disorder is so very new that new abnormalities that cause VLCAD are still being identified. And although this disorder is quite simple to treat, left untreated it's often fatal. Assuming a kiddo doesn't have the disease when they do is a pretty big mistake.

So we went home from that doctor's visit in Dallas and we waited.

Five weeks.

Five weeks of waiting, and five more weeks of following our new instructions: Lincoln must eat every 3.5 hours. So we went back to waking Lincoln in the middle of the night to eat, only this time every 3.5 hours.

And we prayed.

I prayed thanking the Lord for Lincoln. Thanking the Lord that I could hold my baby in my arms. So many times last year I pleaded with the Lord to somehow allow me to hold Hannah one more time. While I cannot hold Hannah, I hold Lincoln. And I pray for our sweet boy.

So we've been praying. Knowing that the Lord is good in all things. And honestly we haven't shared this with the world yet, because honestly, after the first labs, after we were told we could sleep again, we assumed the test was a fluke. We assumed that Lincoln was free and clear of VLCAD. By the time we saw the geneticist in Dallas and restarted the feeding schedule we figured we might as well wait for the DNA results before telling everyone.

So last week when the phone rang with the results of Lincoln's DNA test all of a sudden things got very real. As the lady over the phone talked I tried to read it in her voice. What was she going to say? And then I stopped and I pleaded with the Lord. I begged him for her words to not be "two abnormalities." I wasn't ready for my son to have this disease, this disorder yet.

And she said, "the test found one abnormality."

And I was in that moment, just a little bit relieved.

But then my heart was broken when I realized that this meant more testing and more waiting and meant that somewhere in there, there was an abnormal gene. Somewhere in there, our little boy wasn't perfect.

As the woman talked on the phone, Lincoln's cries got louder almost as if he was crying for me. As if he could hear and understand what was going on just a room away on the telephone. I ran in to get him in hopes he would calm down but my attempts were unsuccessful. I apologized to the lady on the phone and I kept saying "okay" and "yes" although I could only hear every few words she was saying.

I got off the phone quickly after scheduling Lincoln's next test and I just held him. Honestly I held him and I cried. My mind started to go places, wondering why we had to go through this, as if after losing Hannah we somehow deserved perfectly healthy babies. But that's not truth, we don't ask why of God. But I do ask, "What can I do? How can I trust in the Lord? What is the Lord so graciously teaching me."

And if I do ask why, I should only ask, "Why? Why am I so lucky that the Lord continues to draw my heart so near to his?"

So today we woke at 5:00am and I spent time with the Lord. Through His Word, the Lord reminded me of his great power, his great love, and his perfect peace. Our mercies truly are new each morning, and this morning I needed so very much of the Lord.

Our perfect little boy had a skin biopsy today and they'll take those cells and grow them and test them for the next eight weeks. And then we get our answer. Then we finally know if Lincoln is only a carrier of VLCAD or if his body really does work differently than ours, if he really will need all the testing and diet and monitoring that VLCAD often calls for.

We wait. This time for eight weeks.

We wake. This time every 3.5 hours.

We pray. This time for no disorder, no deficiency, but most of all, once again, for the Lord to get all the glory.

Until then, I've got a guy across the room dying to snuggle with me. Well, make that two guys.