Day 20, and a Bit of Background

Hannah had a good night last night, and her bilirubin levels (jaundice) are down to normal, so she has been taken off the light therapy. This means that she won't have a bright light shining on her and won't have to wear protective eye covers, so we're more likely to see her eyes when we visit. Jaundice is very common in preemies, but easily treatable. TRIVIA: The light therapy was discovered by accident when a nurse noticed that infants closer to windows suffered less jaundice.

It occurred to me yesterday that many of you following this blog probably don't know the whole story of how we arrived at where we are. So here's a quick background:

Toward the end of 2004, Carla noticed that she could no longer stand on her tiptoes or ride her bike. Looking up these symptoms and others online revealed a number of possible causes, including thyroid problems, muscular dystrophy, and Lou Gehrig's disease (ALS). Thyroid problems are treatable, the other two are not. Unfortunately, her symptoms most closely matched ALS, which left me absolutely crippled with fear for the three months that it took the doctors to arrive at a diagnosis. ALS is usually fatal within 3-6 years, and it is a slow, painful death of progressive paralysis. I didn't tell Carla about the ALS possibility, because I didn't want her to be as scared as I was.

The most beautiful words I've ever heard from a doctor was "it's not life-threatening". This was December 28th, 2004, the day I was able to breathe and think freely again. It turns out Carla has a relatively mild case of Myotonic Muscular Dystrophy (MMD). Which causes progressive weakening of the muscles (myo= muscle, tonic=tone) farthest from the trunk (dyst=distant, trophy=weakening). It's hereditary, but gets much worse in each successive generation. That's why it is barely noticeable in Carla's parents, and is often masked by the normal effects of aging. In Carla's case, it just means she needs step stools to reach top shelves, and more help opening jars. And she may need a walker before I do, in our golden years.

But what this also meant is that if Carla and I had children, there was a 50% chance that a child would be severely disabled with MMD. We had thought it odd that it took us 14 years of marriage to decide to have children, but in hindsight, it is fortunate that we waited. We actually decided to have children about 6 months before the symptoms appeared.

So, we have had to jump through hoops and work with specialists to ensure that our children did not carry the genes for MMD. These genetic tests didn't even exist 14 years ago, by the way. As I've mentioned before, I'm not a very religious person, but I can't help picture a gentle restraining hand from above that kept us from churning out babies right after we were married. Half of them would have either died young or suffered crippling disabilities.

Which brings us to the twins. After two years of seemingly constant trips to a wonderful clinic (CAR) in Bedford (a very long drive), Carla was implanted in February with two embryos effectively certified MMD-free. Usually, two embryos are implanted to increase the chance of at least one surviving, but both took root, and here we are now. Nothing about the IVF procedure is likely to have caused the pre-eclampsia that required pre-term delivery. These things just sometimes happen.

This background story is relevant because it might help you understand why we are perhaps more emotionally invested in Steven and Hannah than other younger parents, who could likely just try again in a few months if things didn't work out. Not to trivialize the loss of a child, but it is surely a comfort to other parents in our situation that the next attempt might work out better.

Now that Hannah is stable and making daily progress, and has so far dodged most of the complications of extreme prematurity, we are allowing ourselves to be more optimistic. There are still many things that can go wrong, in particular problems with vision, breathing, digestion, and infections. But at the moment, she seems relatively strong and headed in the right direction.

We will eventually learn to cope with the loss of Steven, and pray that Hannah is around to help us.