Wednesday, July 24, 2013

Prayers for Baby Aubree -- An Update

A couple of months ago, I wrote a post about my beautiful niece, Aubree. Her parents had just found out that there was a practically zero chance of her surviving to birth, and the doctors told them that within a matter of days she would be gone. It's three months later, and Aubree is still growing. Instead of writing an update on her, I asked her mom, Sarah, if she would write it. If you'd like to continue following Aubree's story, you can read about her on Sarah's blog, Un-Supermom.
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Aubree's Most Recent Ultrasound Photo

I can hardly believe it's been almost three months since we first found out about our little girl's serious heart condition. We were told at 16 weeks that she would most likely pass away soon. At 20 weeks they did another ultrasound and said she was barely hanging on, and we should have our delivery and funeral plans ready. When we showed up for a 24-week appointment, the doctors told us they were honestly shocked to see us again. And now we are at 28 weeks and making plans to deliver at the only hospital in the region with a Level 4 NICU because there may be a chance that she could make it. 
Alyvia, Sarah and Aubree, and Mike
Family Photos by Amanda Eaton Photography

Aubree's diagnosis probably won't be official until she's born. Some things have changed since our initial appointment, but we know for certain that Aubree has heterotaxy. This is a condition that affects 4:1,000,000 babies born in the US each year (or less than 20). Basically this means her organs are all mixed up inside her body. Something happened around 3-4 weeks gestation that caused the organs to not rotate into their proper spots. Every baby with this condition is just a little bit different from the rest, which makes diagnosing and treating these babies a very difficult task. Aubree most likely has situs inversus (complete reversal of the organs) versus situs ambiguous (organs are more mixed up than flipped). There could be issues with her liver, bowels, spleen, stomach, bladder, and kidneys. Most of these issues can not be seen on a fetal ultrasound so they will have to be checked once she is born.

The most serious concern for Aubree right now is her heart. Not only is it pointing to the right instead of the left (dextrocardia), the actual chambers of the heart are not completely separated and the valves within the heart are not formed correctly. This results in oxygenated blood mixing freely with the unoxygenated blood as it cycles through her heart. The veins that bring blood to her heart are not connected in the correct places, and the arteries leaving the heart are not large enough. The muscles of the heart are non-compacted, meaning they are thick and spongy instead of tight and smooth. Due to the damaged muscle tissue, the electrical pulses of the heart's internal pacemaker are not operating correctly resulting in heart block. The atria (upper portion) of Aubree's heart beats around 100 bpm (beats per minute). The ventricles (lower portion) is only beating around 50 bpm. Normally a baby's heart beats 150-180 bpm. Anything below 50 is considered to be in imminent danger of the heart stopping completely and the baby passing away. Aubree has been towing the line for eight weeks now.
Family Photos by Amanda Eaton Photography

The low heart rate and the inefficient pumping of the mixed blood means that Aubree is considered to have heart failure. This is causing excess fluid to accumulate in her abdomen and chest, as well as causing excess amniotic fluid to build up around her. At our last ultrasound Aubree's skeletal structure was measuring right on-track for 28 weeks. But her poor swollen belly was measuring at 33.5 weeks! This fluid is putting even more pressure on her damaged heart and other organs.

There are really no intrauterine interventions that can be performed on these issues. At this point we are praying for enough time for Aubree to grow and gain weight in order for her to be delivered early. Once she is born the doctors can try to implant a pacemaker and use several different medicines to raise her heart rate and stabilize her. Over the next few weeks we will be meeting with a team of doctors to decide when she will be delivered and what interventions we want performed. For now, I've been given medicines that raise my heart rate in a dose strong enough to pass through the placenta in hopes that it will also have the same effect on her and raise her heart rate with the hopes that this will relieve some of the fluid accumulation in her body.
Family Photos by Amanda Eaton Photography

We didn't realize at the time we chose her name how perfectly it would fit with our situation. Aubree means "supernatural power." And we are relying heavily on God's grace through this journey. 
"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'" (2 Corinthians 12:9). 
We are so thankful to have had the last twelve weeks with our daughter. And we understand that she faces enormous challenges in order to survive delivery and life outside the womb. We are learning to take life one day at a time and to trust God with what seems completely impossible. Whether our daughter lives for four more days, or months, or years, or decades, we are blessed to have this time with her.
Family Photos by Amanda Eaton Photography

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I have had several readers ask how Aubree is doing, and I can't even begin to tell you how much it means to me and my family. Thank you for remembering her, even though it's been awhile since you've read anything about her. Sarah updates her blog, Un-Supermom, every few days with her progress and the plans that are being made for her. Thank you for continuing to lift Aubree up in prayer along with Mike, Sarah, and her big sister, Alyvia. I've said it before, and I'll say it again, "I have the best and most caring readers!"

20 comments:

  1. Always praying for your family! Thank you for the update. You're all such an amazing testimony of our Great God!!
    Kami

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  2. Rebecca, thank you for sharing this. I have been wondering how baby Aubree was doing. I just read a bunch of posts from Sarah's blog. I can't imagine all that they are going through, but it is so good to hear that her faith is strong and her trust is in the Lord. He alone can sustain them through this incredibly difficult time. Continuing to pray for Aubree!

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    1. Sarah and Mike have amazing faith. Thanks for praying, Rustie!

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  3. Sarah looks beautiful and I think that's a testament to how hard Aubree is fighting. God is definitely looking out for your family!

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    1. She definitely radiates a quiet confidence in God, doesn't she?

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  4. I will be praying!! I couldnt imagine what you all are going through!! God will come through and make your baby as healthy as she could possibly be!! P.U.S.H (Pray Until Something Happens)

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  5. My thoughts and prayers are with you and your family and remember anything is possible with God. I pray he will lay his hand on Aubree and she will show everyone the miracles god can do.
    God Bless

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  6. I'm just seeing this post. I'll be saying a prayer for baby Aubree tonight.

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  7. This was so touching. The grace and poise with which she writes is inspiring. I'm crying.

    I am adding your family to my daily intentions.

    May you all be filled with peace and love.

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    1. Sarah is really an amazing woman (and definitely a great writer!). Thank you for keeping them in your prayers!

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  8. What a beautiful family. I am so inspired by their faithfulness and how they are embracing each moment with Aubree. We will be praying for them all. Thank you for sharing.

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  9. I was on vacation when this was posted--and I have read about the loss of your niece. I am so glad that your sister has such a strong faith in God to sustain her during this loss, and I will be praying for all of you.

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  10. I am sorry for your families loss. May god give you all the strength to get through this tough time. Remember she was given to your family even for such a short time for a reason.

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  11. So sorry for your loss. What a difficult thing to go through. Lifting you up in prayers.

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  12. I am so sorry. I pray that God will take care of the family. I also know God will bless this sweet family with another darling child.

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