a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Monday, April 25, 2011

The Littlest Teaster Update: Part II

Okay, a month has passed since our last ultrasound and fetal echo. To recap, go here.

Since that time, I have literally counted down the days until our next appointment, which was today. I woke feeling excited, relieved that perhaps our time in limbo land was over as answers may surface with today's echo and ultrasound, but soon the excitement just turned to nerves and stress. I was not naive to the fact that any news at all, good or bad, could be delivered to us during either appointment.

I'll keep this brief and explain as best as I can, though I am still trying to educate and understand myself. My heart and mind are still trying to grab ahold of all the unknowns and new medical lingo that have all too quickly become a part of our youngest daughter.

Things we knew going into today, found at 22w:
~Baby has congenital heart defects, namely Mesocardia (heart positioned midline as opposed to left side) and Dextrocardia (heart rotated backwards).

~Despite the location and position of baby's heart, we (meaning docs, Rob and I) understood that baby's heart functioned properly with all appropriate valves, chambers, atriums, etc. and with proper blood flow tracts.

Things we learned today, 26w 6d:
~Mesocardia and Dextrocardia are still the case; they don't miraculously correct themselves, and Transposition of Great Vessels (which I am still trying to understand).

~Located in one of the atria is a "flap", or piece of tissue, that should not be present. It does not create a full block as there is blood flow past it. However, it remains to be seen until after delivery is this flap should be obstructive to blood flow once baby begins life outside of the womb. If it is obstructive, our baby's breathing will likely be challenged shortly after delivery and in that case, surgery will be necessary to remove the flap.

~There is a question of abnormal blood flow through one of the right atria. Does the flap mentioned above create this reverse flow of blood? That's to be determined... doctor isn't sure.

~Baby is very active and measuring beautifully. In fact, baby is measuring just about 4 days ahead of gestational age. She currently weighs 2lbs 6oz and all other organs are developed and performing as they should be. This is a good sign.

With all of this said, there are still many unknowns. Our doctor today said that of all the scans she has experienced, ours ranks within her top 5% of the hardest to read. The echo scan lasted well over an hour again today and at which point they just stop for the ease of the patient. We will be seen again in 4 more weeks to continue following the growth and heart functions. With each passing month, more of the picture will come into focus which will allow for the doctors to develop a safe delivery plan with the appropriate staff on call to accommodate our baby's immediate needs. In other words, we continue to live in limbo land until this baby makes her way into the world. Until doctors can do a complete physical assessment and echo after delivery, we will not know all the details, nor are doctors willing to speculate or guess at this time. A lot can present itself in this last trimester as baby gets bigger, holds still for longer (which makes for easier scanning) and as the heart grows.

So, here we remain - as residents in limbo land. We are just trying to find the optimism hidden among the sea of unknowns. The only things we know for sure is that life here in limbo land stinks, July seems so far away, and our love for this baby runs deep already, regardless. This is all out of our control - we have no choice but to patiently wait right here.

11 comments:

  1. Praying for you. Thinking of you. I wish I could give you a hug right now Mo!

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  2. Darling Mo, whatever challenges your family is facing with the littlest Teaster, you will be able to handle it with grace. I know you will, because that is who you are - incredibly strong, incredibly resilient, and incredibly loving. I do wish, however, that I could help you with something. I'm still trying to figure out how to mail a pan of homemade macaroni and cheese across the country, and when I do, you'll be first on my list. Give Oia a squeeze for us my dear, and hang on. Focus on the high level of joy part of being a mother - even with the challenges there is a lot of joy so put your mind on that as best you can, and be good to yourself as you wait through this part. HUGS!

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  3. Oh I hate you're in limbo land. I'm sure the appointments aren't coming fast enough at this point. I hate this for you! It's a great sign that everything else is developing normally, and she's big! :) Looking forward to more updates for sure. Hugs to all of you!

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  4. Oh my friend, all I can do is pray for your strength and courage. I can't imagine how you guys must be feeling, nobody can. I am still praying for y'all. I have faith that God will give you the strength you need to make it through these next months.

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  5. I really wish this had been a smoother pregnancy for you and I'm sorry that in this case, being in the top 5% is not good. Don't you love when they tell you things like that? What are you supposed to do with that information? lol Praying for you and your the littlest Teaster girl. I'm sure that regardless of the challenges she brings, she will be wonderful just like her big sister Oia!

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  6. I just want it to be easier for you. So much. I am praying. And I wish I could give you a hug.

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  7. Saying a prayer for you all right now. As we so often do, I think of our situation. Charlie was on the heart floor for five weeks at a major Children's Hospital. Most of the children there underwent open heart surgery and all of the ones that did, are doing great today.

    But I'm praying that you won't need any intervention and that your girl will emerge a little "quirky" in the anatomy department, but with nothing else wrong.

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  8. Just found out this morning - at 19 weeks - that our baby has suspected mesocardia. I am so happy that I found this blog with your cheery disposition (and the ending already written!). It has made me feel better already. Thank you!

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    1. Andrea, I'm glad you found us! It's been over two yrs now since this post and all is just fine for our baby. Our story seems a complete turn-around from doom and gloom 22 wks ultrasound to an everything-is-okay toddler today. She is a healthy, active, SMART, two yr old who knows her heart is "in the middle" when we ask her. And positioned almost backwards too but still a heart wired and functioning as it should. I know that hearing such news is scary for you now but hold on, have faith, and know that no matter the situation today, tomorrow, or next year, it will be OK. Really. Perhaps you can email (address in profile) with an update as things progress... I'll be wondering about you. Best, Mo

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  9. Dear Mo, I have been following the stories of your Littlest Teaser. She was a ray of hope when my daughter was diagnosed with Mesocardia in utero. It was a very scary time, but seeing how healthy your daughter was gave me hope. My daughter is now a year and a half and her heart position is a 'normal variation', she is perfectly healthy!
    Thanks for your blog :)

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