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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
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14
Showing posts with label rainbow baby. Show all posts
Showing posts with label rainbow baby. Show all posts
Sunday, September 15, 2013
Happy 1st birthday Solomon!
One year ago today, our rainbow baby Solomon was born. One year and nine months ago, our sweet Lilly passed away. What a gift Solomon has been in bringing healing to our broken hearts. To filling our arms back up. To bringing more amazement back into our lives. I thank the Lord for him every day, as I do for our other children. Believe me, I do not take any child for granted.
I've purposely delayed giving Solomon grains of any kind, so when it came time to think "birthday cake" I wasn't sure what to do. Hunter pointed out that Solomon's favorite food is bananas so he suggested a banana cake. So that's what I made. I had no idea if he would eat it, but figured we needed a photo if nothing else!:
Solomon wasn't sure what to do with it:
But he found he enjoyed hitting the cake with his spoon and then throwing bits onto the floor:
Solomon thought eating wrapping paper was much more tasty:
Yesterday I made Solomon his birthday t-shirt. Of course it was huge on him today, but I know it will fit a bit better each birthday to come:
After supper, I gave Solomon a piece of "Lilly chocolate" to try. He decided that was a birthday treat much more to his liking:
(You can see Lilly eating her chocolate here. )
"O give thanks to the Lord, call on His name; make known His doings among the peoples!" - 1 Chronicles 16:8
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
Wednesday, March 21, 2012
"Rainbow babies"

I saw this dress at Kohls a few days ago and it reminded me of our Lilly - our Independence Day girl! (Not sure why the picture turned out so small - I took it on my cell phone at the store.) I had the idea of hanging up a bunch of Lilly's red, white, and blue clothes across the fireplace mantel (on the Christmas stockings nails) in July for the memories and decor. :)
I learned a new term last week - "rainbow baby." It seems that is a term for a baby born after a sibling that has died. So the baby I am pregnant with is referred to as a "rainbow baby." I had also heard the term "therapy baby" but I think I prefer "rainbow baby." It's so colorful and cheerful!
In our Trisomy 18 circle, there are a number of mama's that are pregnant with rainbow babies. One mama posted this picture which has this explanation on it:"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with the aftermath. What it means is that something beautiful and full of light has appeared in the midst of darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."
I think that's beautiful. My emotions are all jumbled up about losing Lilly and being pregnant and these words just help some of that fall into place in my mind.
[God speaking after the flood] "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth." - Genesis 9:13
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