An update on Thadwick / Miss Beautiful

We had a level 2 ultrasound this morning that essentially confirmed what we learned yesterday and provided some additional information.

We don't have a conclusive diagnosis of Turner syndrome, though there are signs that could point to that. They weren't able to establish the gender but we should know that tomorrow pending some of the results from the amniocentesis.

Here's what we do know:

• There's excessive fluid buildup around our baby's internal organs and - well, all over. There's a large sac of fluid behind the baby's head/neck that's larger than its head. The doctor was an older man who said he's done over 10,000 amniocenteses. He said the amount of fluid in our baby is a lot - "up there" among the worst cases he's seen. That alone would cause any baby's heart to stop functioning due to the stress.
• The heart is abnormal. Only 1 heart chamber (maybe 1.5) is pumping. There are a number of potential reasons but it appears there's a heart defect that would prevent the baby from surviving as well.
• There's either one kidney or the two kidneys are fused.
• There isn't movement (or is minimal movement) in the feet and legs. The cause of this is unknown.

These are the major complications. Hopefully the tests will tell us if there's a chromosomal abnormality. If there isn't, there's not much we can know right now.

So those are the facts. I got emotional as I started to write this post and entered the names in the title. I wasn't emotional at all talking about the facts. I'm emotional again as the name "Miss Beautiful" crosses my mind.

Many, many people - more than I ever could have guessed - have asked how they can help. Our first request is for prayer. We need peace, grace, and healing in a number of ways. The most difficult part of our 2.5 hours at the hospital this morning was discussing with the genetic counselor what to do with the baby once its born. Funeral? Memorial service? Private time? Cremate? Burial? Dispose in some other way? These are questions we never imagined needing to answer 2 days ago and they made the end result very real.

What made this morning's experience at the hospital somewhat ironic is we were in the same office as we were a year and a half ago for our 20-week ultrasound when we found out we had twins. In fact, we had the same doctor and genetic consultant today as we had then. Of course, a year and a half we were crying tears of joy and laughter at the news of having twins. This time it's tears of sadness.

A woman in the waiting room was 12 weeks along and thought she may have twins. She was complaining about the prospect of having two and said (loudly enough for everyone in the room to hear), "Please dear God, just ONE healthy baby." I found irony in how the words of our prayers were really no different, even if our circumstances were night and day from one another.

A number of people have asked about meals. Meals are definitely helpful but it's hard to know when and how frequently we'll need them. We're heading to Duluth for a previously-planned (surprise to Jamie) anniversary getaway for the next two days (our 4th anniversary is tomorrow) and will be back Friday. From there, we have no idea what the road will look like. We still have a baby who's alive and a very tough road between now and when the journey for the little one comes to an end. We had friends bring us a meal and stay with us for a few hours last night and found it really helpful. Not only was it a distraction and an opportunity to talk about other things (as well as process through the whole experience with them), but having dinner prepared, cleaned up, and toys picked up at the end of the day was a huge help. It was so nice to just put the kids down and be able to be together with just the two of us - and, of course, our baby.

So I don't know what to say exactly. Do we need meals now? Do we need them in 2 weeks? Do we need them when this baby is born? I don't know the answers but if you would like to help, please let us know and I will try to coordinate it as best as I can. I have a number of offers through Twitter, Facebook, email, text messages, and phone calls and will try to organize them and respond over the next few days.

Thank you again for your sympathy, thoughts, prayers, and words of encouragement. This is devastating and heartbreaking for us, but we know we're not alone.

I don't know how much more news there will be other than the results of the amniocentesis and I'll post them here once we have them. Other than that, if there are any new developments I'll try to post updates here.