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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

Friday, May 18, 2012

A delightful surpise on SOFT's website

Painting by T.

Yesterday I had a check up for Rainbow Baby at the birthing center.  I was so happy that the midwife I saw yesterday was the one that I spent the most time with when I was pregnant with Lilly and who  helped deliver Lilly.  I feel like we have a special bond.  She said she is going to try and be the one to deliver my Rainbow Baby.

My son H. went with me and he told the midwife what he and T. wanted to name the baby.  A name my husband suggested.  She asked me what I thought.  I said I still didn't feel able to think about names yet.  I admitted I've been having trouble bonding normally to this baby.  She said she knew, she could see it in my eyes.  I feel horrible admitting that because I am so grateful to God for this baby.  But, according to a number of other Rainbow baby moms, this is normal.  Some were able to bond later in their pregnancy.  Others did instantly once they finally held their babies in their arms.  So I guess I'll stop feeling guilty and just give it time.  I share this to help anyone else out there reading this that may be having the same emotional struggles.

The appointment went well.  It is so reassuring hearing the heartbeat.  I did find out that baby boy is breech, something they didn't tell me when I had the ultrasound.  The midwife told me "no more breech!"  The baby still has lots of time to turn on his own, and I'll do all I can to turn him.  Still, because I delivered Lilly breech and it was "quick and easy" so to speak, we aren't going to automatically say "c-section" if he stays breech.

H. really enjoys going with me to the appointments.  He was fascinated watching me get my blood drawn at the glucose test and he thinks the doppler that we hear the heartbeat on is amazing.  I am glad as it really helps me a lot to have the cheerful little guy with me.  Driving to and from my appointments I pass so many doctors and pharmacists where I had taken Lilly during her life.  I could do the trip alone, but really would rather not at this point.

Last week I was on SOFT's website (Support Organization For Trisomy 18, 13, and related disorders) getting some information, and I was surprised - and THRILLED - to see a picture of Lilly staring back at me from the top of the website of pictures of Trisomy children that flash up.  As I watched I saw several other children I recognized and then TWO more of Lilly.  That made me feel so good.  :)  The three pictures of Lilly in today's post are the ones that are on SOFT's website.
If you ever need a carebook about Trisomy 18 or 13 children, you can get the best one on SOFT's website:  Care of the Infant and Child with Trisomy 18 or Trisomy 13 by Ann Barnes with John C. Carey, MD.  (Ann had a daughter, Megan, with Trisomy 18 that lived almost 20 years!  She lives about an hour away from me and came to visit Lilly at one of her hospital stays.)  Here is where you can order the 2nd edition in paperback.  Or, you can buy and download the 3rd edition (updated 2011) from here on their website. 

It makes me happy to share that there are two quotes from this Lilly blog that are included in the book.  One from this post regarding results from her audiologist (that as Lilly grew, and her ear canals got bigger, perhaps she would hear better), and the other is compiled from these two posts (one and two) and our discovery about preventing her obstructive apnea.  (Have her sleep only on her tummy or side to keep her tongue from obstructing her breathing!)  I hope those two tips will help parents of other Trisomy children.  I know Lilly's life was not in vain!
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." - 2 Corinthians 1:3-4
Lilly photos today:
1 - at her first sleep study - Feb. 2011
2 - after her heart repair surgery - Nov. 2011
3 - just after turning 1 year old - July 2011


  1. I don't remember seeing that last photo of Lilly. She favors Hunter in it. :)

  2. I have been neglectful of you as I struggle with life. But I read everything you post about Darling Lilly and your family. Today I loved to read about your struggle with this pregnancy, never for a moment thinking that this could be the case. You amaze me in your willingness to share your feelings. Your new baby has no idea of your struggles and will come to you as all babies do to their mother; needing your love and acceptance. I will continue to follow the impact Lilly's life has had on you and yours, and on me. With love from Carol in NZ. xxx

  3. Sweet Lily, I love her pictures:)
    I can imagine a next pregnancy would be hard.((Big HUGS)) I will be praying for you and your new little one.