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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Wednesday, April 18, 2012

Lilly's baby ... BROTHER!

This morning I had an ultrasound of my rainbow baby. I'll get right to the point because I know so many are wanting two answers right away:

1) It is a boy!

2) The baby appears to be healthy and normal in every way.

Even though I knew it is very very rare to have more than one baby with Trisomy 18, I admit I felt flashes of nervousness. (That uptight feeling where I feel I can't breath well.) I was most anxious to see the hands, to see that they were not clenched. (Lilly's always were, and that is a marker in the womb of Trisomy 18. You can read my ultrasound posts about Lilly, where I mention the clenched hands here and here.)

Well this baby had both hands opened and we could see all fingers extended and accounted for. (That's it's hand waving in the last picture.) Our ultrasound tech was a very kind woman and she printed the hand picture for us, after we told her about Lilly and why I need to see the hands.

We ended up sharing quite a bit about Lilly and it was so wonderful. It turned out that this tech had even seen the wonderful quilt that our genetic counselor had made for Lilly. I showed her pictures I carried of Lilly in my purse and she was able to then put a "face with the quilt." She was amazed that Lilly looked so normal. And she really did, especially once she started plumping up! Though she kept those T-18 eyebrows. :)

The tech explained a lot of what we were seeing (much of it I knew well from having a number of ultrasounds with Lilly) and she was very reassuring that everything looked good and normal, many times.

When she was done I gave her one of Lilly's "business cards" (last photo) and she said she would post it the bulletin board for other employees to see too. She thanked us several times for sharing Lilly's story. I was thankful that she listened!

Then she took the ultrasound results to the doctor to review, and he came back in with her.

We remembered him from before, when I had ultrasounds with Lilly. I reminded him that we had been in with the baby girl with Trisomy 18. He was very interested to hear that she lived 17 months, had heart surgery, did physical and occupational therapy, and that she could smile and laugh and interact. And that she spent most of her time home - not in a hospital! He gently asked how she died, and I was glad to share that too.

I ended up giving him one of Lilly's "business cards" too after he asked if there was a way he could put other moms in contact with me, if a baby with Trisomy 18 was suspected.

All in all it was a good experience today. A chance to see our little boy, who did a lot of moving around, and then curled up to sleep in a funny position. (Which is why we didn't get any of the 3D pictures - he kept his legs and hands blocking his face.) And a chance to share that having a special baby with Trisomy 18 was something we felt was a blessing and we treasured every minute.

Two last questions to answer:

1) Did I prefer a boy or girl? I didn't have a strong preference. But I did wonder, if we had a girl, if we would be trying to make it a "Lilly clone." (Wearing the same clothes, wanting her to fill that Lilly void, etc.) And of course that wouldn't be healthy for us, or the child. This baby deserves it's own identity.

2) What names are we thinking of? Well I actually refused to think of any before today. My husband shared several he was thinking of. I need time to think now. And no I'm not ready for us to share any possibilities yet. (Some people can be amazingly opinionated when you share a name you are thinking of for a baby and they will actually tell you they don't like it or something else negative!)

The ultrasound tech said she liked the verse on Lilly's card. I do too. It fits not only Lilly, and rainbow baby, but ALL children:

"I will praise You, for I am fearfully and wonderfully made...." Psalm 139:14


  1. I am so happy for this new addition to your family. Over the past months, I have visited your blog to see updates. May God Bless all of you. Love, Mary Waters

  2. so that means i will have 4 granddaughters and 4 grandsons. a nice balance!

  3. So excited to see the pictures of your baby Boy!!! Glad the tech was so helpful and that you were able to share Lilly's story with her and the dr. - maybe Lilly's business card will be a blessing to other parents who hear that their baby has trisomy 18 or 13.
    May God continue to inspire and use you for HIS glory!
    love- holly

  4. Yay, a new boy cousin for Josiah! I was waiting with baited breath and am so glad to read the news. I'm excited for you!!

  5. What fabulous news! It sure brought a smile to my face and a few tears to my eyes! I am SO happy for you all! Cannot wait to hear all about this precious little boy. Loving all the updates. Congrats!!!

    Ronna Pernell

  6. Wonderful news! Praying for you for a healthy pregnancy and healthy baby boy!

  7. Wonderful news! Now I can start crocheting.... :)

  8. AWESOME news! So happy for all of you!!