Thursday, October 15, 2015

Not out of the woods but we've found a path.

Earlier this week we made another trip to Vanderbilt. We of course had high hopes, but with all the information we've gotten so far we remained guarded. Sean and I were both sick which of course made the trip all the more challenging. 
 
The first appointment was for a fetal MRI. I have had MRI's before but this was different. Me being sick (but not allowed to cough) and shoved into a pediatric sized MRI machine while nearly 8 months pregnant nearly sent me into my first panic attack. I think Avie felt my distress and started trying to help break free. Although I appreciated her spunk and effort it more than doubled the time it took to get appropriate images. 2 hours later we finished up but by that time I had a fever and was in a cold sweat.  Yet it all turned out to be completely worth it.

We learned from those images that little Avelyn does not have an airway obstruction. Although she may have some slight stenosis or narrowing of her airway, at this point it is not seen as clinically significant. This is such a blessing as it means our baby girl will have a voice and should be able to eat and breathe normally. Aka no tracheostomy or feeding tube! We should also be able to avoid the EXIT procedure and also have the possibility of a more natural birth experience. We'll still have to relocate to Vanderbilt to ensure our baby girl is delivered into the most capable hands as possible but we won't have to leave as early as we were expecting. 

So from a medical standpoint our girl isn't out of the woods by any means. She will still be born with critical heart defects (pulmonary atresia with a ventricular septal defect) and there's still the possibility of a chromosomal disorder (DiGeorge Syndrome).  However at least now she will have a real fighting chance and be able to go into her heart repair surgeries stronger and more equipped to heal. 

We thank you everyone for all the support and prayers provided to our sweet little Avelyn. She is already proving to be a feisty girl with a strong spirit. She is growing well despite her challenges. Currently she is in the 91st percentile for size! No kidding, she is over 4lbs at only 30 weeks gestation 😳 and it's not due to gestational diabetes, she just a big strong girl. The doctors say with all the surgeries she will need, bigger is better. They will let her grow as much as possible and then induce at 39 weeks, if she doesn't decide to come before then. In her case it's better to need to deliver by C-section and for her to be bigger than induce sooner so I can deliver naturally. We'll see how it all goes. We only want what's best for our baby girl.

Lastly we learned that she's pretty cute if I must say so myself. She seems to have Sean's mouth, my nose, and a head full of hair 😍 We'll just have to wait and see if it's a head full of ginger hair or dark like her dad's. Either way she's our little blessing and she couldn't be loved more. 

5 comments:

  1. So glad to hear her airway is good! My bet is a fiesty redhead like her Momma ;)
    Keeping you guys in my thoughts and prayers!

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  2. So glad to hear her airway is good! My bet is a fiesty redhead like her Momma ;)
    Keeping you guys in my thoughts and prayers!

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  3. Thanks for the update. I have been praying for your family and this angel for some time and will continue to pray for yall. Much love and God Bless

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  4. So glad to hear her airways are good! I'm still hoping for a big ole chunky ginger baby! I think about yall almost everyday and I will continue to send good vibes to sweet Avie and her badass parents!

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  5. Thankful prayers are answered & very happy to hear such good news! All 3 of Yall remain in my thoughts & prayers. Much Love!! Aunt Lana

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