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Wide White: An update on Thadwick / Miss Beautiful

Wednesday, February 23, 2011

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.

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Blogger kristi noser declared,

Your honesty and transparency at this difficult time is admirable. You are quite a man, Joeywhite (I believe I've said that before). I will continue to pray for you and Jamie and your sweet Miss Beautiful. She already has so many people who love her!
Love you much,

2/23/2011 5:56 PM  
Blogger Carla declared,

Grieving with you and thanking God for your quiet strength in the midst of this.
The love you have for your baby girl brings me to tears.

2/23/2011 6:05 PM  
Anonymous Molly declared,

Grieving with you. Loving Miss Beautiful. Your daddy heart for her is just as it should be.

2/23/2011 7:17 PM  
Blogger Amanda declared,

Joey and Jamie, I cannot begin to imagine how are two are feeling right now. I am so sad to hear this news of your little one. Ben and I will be praying diligently for you guys and for the difficult decisions you will have to make in the coming days. I shed tears of sadness with you.

2/23/2011 8:28 PM  
Blogger NoOtherName declared,

Oh, Jamie! I am sitting here sobbing, not wanting to believe what I just read. Wishing I was there with you right now so we could cry together. I love you, sweet girl. And I love you, sweet baby.

2/23/2011 11:09 PM  
Anonymous Kris Hallblade declared,

Joey, I don't think we have met, but Jamie might remember me. Thank you for sharing your story. I too am grieving with you and am praying for your family at this difficult time.

2/24/2011 8:19 AM  
Blogger Qadoshyah declared,

Wow, I'm sure that is extremely difficult to go through! May God have mercy on your baby & heal her.

P.S. I know I've never commented or been to your blog before. But, I found out about it from your mom on a Down syndrome message board (as I have a little brother with DS).

2/24/2011 5:52 PM  
Blogger April declared,

We are hoping and praying with you.

2/24/2011 7:40 PM  

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