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

Thursday, March 24, 2011

The Littlest Teaster Update

Not sure how cohesive this post will read as the last 24 hrs have been full of trial, to say the least. The emotional roller coaster we seem to not be able to step off of has once again taken us for an unwelcome ride with quick twists and turns through some spooky, dark tunnel; a ride that feels all too familiar. Thankfully, we saw some light today... I'll try and explain.

Yesterday was my 22w ultrasound. There's no denying it, I was nervous. Immediately, we learned of our baby's gender and the tech began scanning baby, head to toe. All seemed fine. What felt like an hour later, we were still in ultrasound - and Rob and I silently noticed that there seemed to be a great focus on our baby's heart. We thought nothing much of it as the heart, of course, is a rather important organ to scan. Still, I laid patiently with all eyes glued to the screen. Finally, the scan was complete and we were walked to another room for my prenatal appt which immediately followed. We waited for our doctor to enter the room with eager anticipation as we smiled ear to ear with the joy of having another daughter.


Unfortunately though, joy can melt into anger and fear in just a moments time. The deep breath our doctor took as she closed our room's door behind her was that moment; joy left and fear entered. She spared us no more wait... our baby was diagnosed with Situs Inversus. In English, internal organs are positioned on the opposite side of the body. The primary concern was of the heart and stomach location/positioning with a questionable abnormal outflow tract of the heart. I crumbled. Thankfully, I have one helluva' strong husband who was able to hold composure long enough to ask some important questions to which there were no clear answers for. The words surgery, mortality, and abnormal bounced around that room and erased every ounce of my faith. We were referred to UVa for a fetal echo and high risk ultrasound, which was worked out for this morning at 8 am.

Waiting through the night for this mornings appointments made for the second worst night of my life - the wonder, the anger, the why's, and the unknowns are more than enough to drown the strongest of spirits. Shame on us for having the faith that this time things would be different and perhaps easier. Really, what possible lessons are there left for us to learn? The odds of having not one, but TWO children with needs...? Why, why, WHY?

Before we got out of bed this morning, we had our last good cry. Then, we made a plan to put on our big kid pants and focus by going into "what now?" mode. Anger faded away slowly and we just decided to figure this mess out and do for our littlest daughter as we have for our oldest... whatever it takes.

I had 3 more ultrasounds today, one of which was the echo. Sparing you the details, here is the conclusion of our appointments:

~Baby does not have Situs Inversus. Her abdominal organs are in the correct location, including stomach, and all are formed correctly, measure as they should, and appear to be functioning correctly as well.

~Baby does have Mesocardia. Simply put, her heart is positioned more midline than on the left. Also, it is rotated a bit but the beauty in all this is that as best as ultrasound can tell, it is functioning properly. Proper in/outflow, no abnormalities, all chambers, valves, ventricles, and atria are present and working. Good heart, wrong spot.

~Baby's measurements are precise with 22w. This is a good indication of what the heart is doing for the rest of her body; correctly supplying blood.

~All of this info comes from the images of ultrasound. At 22w, some areas are still hard to decipher. As baby grows, we will continue to learn more of this puzzle but for now our doctors tell us not to worry and feel confident that this baby will not need surgical intervention after birth and should live a very normal life.

(Sigh) What do we do now? I will be followed by high risk with my next ultrasound in a month. I will see my regular OB in two weeks. Rob and I have made the decision to deliver this angel at UVa instead of the private hospital that we once were. In the event that complication arises at delivery, we will have the safety net of a NICU through UVa. Until then, we put one foot in front of the other and love on the spunky, little girl we have to hold now. And breathe. Just breathe.

15 comments:

  1. What a beautiful picture! Bet you are exhausted. I will keep you and your little one in my prayers.

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  2. Oh, Mo darling I am sending you hugs and a shoulder to rest your head on. You can do it, honey.

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  3. Wow, what a tough couple days. I'm glad things are looking up. Breathe is right, girl. Thinking of you guys. And congrats on another girl. Sisters are great and Oia will love having one!

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  4. Oh my goodness! What a rollercoaster ride you have been on! I'm so relieved that everything is now pretty much OK. Keeping you in my thoughts!

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  5. I had a lump in my throat reading this. I'm sorry you guys are going through this. You don't need the stress. Everything seems to be looking up though. Everything's working the way it should...great news!! When the baby gets bigger they'll see things better, and I'm sure everything will be fine! When we had our 22 week ultrasound for Hanna, they told us she would have a kidney problem, and probably need surgery right after birth to remove it. Next ultrasound, showed nothing of the sort. Her kidneys are perfect.
    Just like your little GIRL'S heart!
    I'm so excited for you guys. Just try to breath. I know its easier said then done.
    Hugs to you all.

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  6. So glad you got some better news yesterday. And happy it is another girl! I hope the rest of the pg is not so eventful although I'm sure there is very little chance of you being relaxed now.

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  7. How scary for you both! I'm so glad it looks like everything will be fine. What a week you've had.

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  8. HI MO
    CONGRATULATIONS ON ANOTHER GIRL.. OIA WILL LOVE HER BUT SHE MAY BE JEALOUS MY NIECE WAS THE FIRST FEW WEEKS BUT SHE LOVES HIM TO BITS..

    NICE PICTURE MO! SOMETIMES I THINK DOCTORS SCARE US BECAUSE THEY CAN, AND I FEEL THAT THEY SHOULD NOT SAY THINGS UNLESS THEY KNOW..

    WHEN I WAS BORN DOCTORS SAID I WOULD NOT DO ALL SORTS OF THINGS, WELL THEY WERE WRONG WEREN'T THEY?? MELISSA

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  9. Glad to read that the first diagnosis was wrong. Try to relax... You are in my thoughts and prayers.
    Hugs

    Liseli

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  10. Thankfully there was some good news out of the bad news. Growth comes out of the darkest moments and I believe that's what has happened. There is light, there is levity, you just have to have the courage to keep forging ahead. Wishing you strength in the coming months. You are strong and brave.

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  11. HUGS to you and I am glad that everything seems better now! Hopefully the rest of the pregnancy will go just perfectly!

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  12. What a scary moment for your family. I'm glad to hear that things are placed correctly and working acurately. Will be thinking of you and your family during these trying times. Try to stay positive and focused and get the strength from family and friends

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  13. She looks so beautiful already! It must run in the family- You are all in our thoughts and prayers and we think of you often!
    Love- The Hunt's

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  14. Oh Mo! Ok prayers are ordered! I can't imagine how frightened you must have been. I am going to pray for your Faith to remain strong and you to have the strength for what ever happens.

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  15. My heart broke a little bit as I read this post, imagining the pain and heartache you were feeling and then to have it all turned differently the next day. I felt angry at the doctor for putting you both through that. And angry that it would happen at all. I am praying for you and your little girl and for a healthy arrival. Sending lots of hugs and blessings your way.

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