Stella's Story: Part 1

Here is the beginning of Stella's Story: Stella's Story: Part 1
The rest is coming soon!

Our Baby Girl - we're 1 in 100,000 - PLEASE PRAY!

To all our friends and family,

Today, we found out that our baby girl has a very rare congenital heart defect called Interrupted Aortic Arch (happens in 1 in 100,000 births). Here is a great site that explains IAA and the related heart defects that are associated with it, all of which are present in our baby girl:

What this means for us is a very long road of ups and downs for us over the next six months. It is 50% likely that our baby girl also has DiGeorge Syndrome because she has the IAA, a pelvic kidney, and is small for her gestational age. Most likely, we will not find out if she has a genetic disorder until after she is born. From what I have read, DiGeorge happens spontaneously 95% of the time and is not inherited.

The plan is for me to have a C-section at Kennestone hospital. If our baby girl is stable, we will have a chance to see and hold her. I won't be able to feed her, though. Within a few days, she will be transferred to Children's Health Care of Atlanta in Egleston for open heart surgery. If everything goes well, she will be there for an estimated two-three weeks. They hope by the time we bring her home she will be able to eat from a bottle at least partially and receive the rest of her nutrition from a feeding tube.

We saw the ICU at the Children's Hospital today, and it was totally heartbreaking. It was hard enough to see other people's babies after surgery; nothing will prepare me to see our own baby. Not to mention that I won't be able to be there for her right away since I'll be recovering from a C-section.It is really important for our baby to make it to full-term, and right now, the doctors aren't sure if the placenta is completely healthy or if the fluid around the baby's heart will prevent a full-term delivery. Please pray that our baby will grow as big and strong inside of me as she can before birth for the best possible chances of survival.

The song from the band Fee has been my song to say it all and explains the hope I'm clinging to. I'm grateful that so far, God has given me the grace not to be angry or bitter about this sad news. I know that this child is not an accident, and if this is what it takes for God to receive the glory, that all I can do is trust. We are hoping for the best and trying to be prepared for the worst. We will try to keep you updated.


You said
you'd never leave or forsake me
when you said,
this life is gonna shake me
you said
this world is gonna bring trouble on my soul
this I know

when everything falls apart
your arms hold me together
when everything falls apart
you're the only hope for this heart
when everything falls apart
and my strength is gone
I find you mighty and strong
you keep holding on
you keep holding on

when I see
darkness all around me
when I see
that tragedy has found me
I still believe
your faithful arms
will never let me go
and still I know

Sorrow will last for the night
but hope is rising with the sun
(it’s rising with the sun)
there will be storms in this life
but I know you will overcome
but I know you will overcome


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About This Blog

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This is the story of our daughter, Stella Rose, who went to be with Jesus after five days here on this earth. Stella was born with multiple birth defects due to a severe case of Wolf Hirschhorn Syndrome. Although Stella is no longer with us in person, she has changed us forever. Stella's legacy is my journey on a new road without my daughter, and how God is working in our hearts.

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