Stella's Story: Part 1

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

Update on Baby

First, we'd like to share our baby girl's name with everyone, so I can talk about her specifically. I feel like it's important for us to recognize her identity, and calling her by name and praying for her by name is helping me bond to her. So here it is: Stella Rose.

I thought maybe it would get easier to know more details about Stella's condition, but it's just getting harder. I've read several blogs of parents who have a child with the same conditions our baby girl has, and in every situation, the first year seems to have been a nightmare: doctors, surgeries, tubes, monitors, medications. We keep gaining more and more knowledge of what to expect, but so much is unknown. Right now, I'm trying to take it week by week, but time is going so slowly.

There has been some good news. For the past two weeks, the pericardial effusion (fluid) around Stella's heart has been normal, and she is showing no signs of distress or heart failure. The fluid increased slightly today, but it was still nominal. Before I knew that the amount of fluid was nothing to worry about, the nurse practioner totally freaked me out, mentioning how concerned she was and that I might need to go on bedrest (I'm kind of on bedrest already when I'm not working). Thankfully, I was able to speak to the head doctor of the practice. He was encouraging, which I totally needed. Dr. Potter told me that the fluid level "was nothing to get excited about. Every baby has a certain amount of fluid around her heart that allows it to beat freely. The fluid is only dangerous if it surrrounds the entire heart at is 4+ mm at the thickest part. The fluid around Stella's heart is only 2mm, and it's only in one spot, which is normal because the fluid shifts depending on the position of the baby."

Last week, we thought that perhaps there had been a mistake about the worst of the heart defects (Interrupted Aortic Arch), because the sonographer told us she thought she saw the whole aortic arch. However, she informed me today that she misread the sonogram, and one of the other veins was mimicking the aorta. She showed me the real aorta and where it cut off. I saw it distinctly for the first time today. It was sad. I still believe that God could peform a miracle, but I don't know if the miracle will be through medical intervention or maybe just in the hearts of those who are following our story.

The doctor confirmed again today that Stella has the same heart defects that we suspected, but that her condition is not worsening at all. I have an appointment with the pediatric cardiologist in two weeks.

I am becoming more and more emotional about the whole situation as I continue to bond with Stella. ( At least I get to kind of see her every week.) Ely is making it really hard for me, as he is already really attached to his sister. He made her a picture, and he wanted to put it on the fridge "so baby Stella can see it." I teared up immediately at his request, and prayed that God wouldn't let anything happen to this baby. Not just for my and Mike's sake, but for Ely's sake. Ely is such a sweetheart, and he is so excited to meet his sister. What's crazy, though, is that he knows the reality of life. He said to me today, "Mommy, if Stella dies, will you have another baby?" Not that these hard realities haven't crossed my mind, but for Ely to voice them makes them even harder to consider.

On top of Stella's difficulties, I am not feeling very good. I am waiting to hear if I have digestational diabetes, and my blood pressure is a bit elevated. I am supposed to be resting. My body tells me to rest, but my mind keeps wanting to nest and do projects. The doctor told me again today that I'm not supposed to do anything that I don't absolutely need to do. Mike has been absolutely amazing at taking care of me and the boys and forcing me to relax, but then I feel bad that he has such a big burden on him.

Please pray for peace for me, that my body can be at rest and nurture Stella the best that it can, and that the next 11 weeks will go quickly - and, of course, that I'll make it to or close to 40 weeks. And, please keep praying for Stella, for our family, and for all those affected by our situation. We need all the prayers we can get. Thank you to those of you have been helping us out already through prayer and through serving our needs. We really appreciate it!

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


About This Blog

My photo
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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