Wednesday, November 11, 2015

Playing the Waiting Game

Sean and I just returned from Vanderbilt where we received some potentially promising news. Our little Avelyn is growing well, and seems to be within the 90th percentile across the board of measurements. Her estimated weight is currently 6lbs 9ozs, at 33 weeks 5 days gestation. She is still quite active and looking more and more like her daddy by the day.

As for her medical conditions, her airway is still looking good-although she didn't cooperate much for ultrasound assessment. She seems to be a little shy about showing her neck. As for her pulmonary atresia and ventricular septal defect, she is doing as well as can be expected. The most recent echo confirmed she does not have a pulmonary valve and the root of her pulmonary artery is too small to be of any use once so ever. However we did confirm some good news though. Her left and right pulmonary arteries are of normal size/diameter and are in the correct place (these are the vessels that run from the pulmonary artery root to each lung). This is great news that makes her prognosis much better as it means these important arteries will not have to be crafted from her other major vessels. 

The best news we received is that considering her stellar growth rate and the condition of her pulmonary arteries after the bifurcation, she may be a candidate for skipping her BT Shunt surgery (which is essentially a surgery to create an artificial ductus arterious). The BT shunt surgery is meant as a temporary means of providing oxygenation/perfusion until she is larger and stronger enough to handle the more serious surgery of valve and root artery graft placement and ventricular septal defect repair (patching the hole between her left and right ventricles). Skipping the BT shunt repair and going straight into the more major cardiac surgery will be much harder on her little body initially. Therefore not many babies qualify for this option and very few doctors preform this surgery on newborns. However the potential benefits of doing this surgery earlier are numerous. She would have one fewer open heart surgery-meaning less scar tissue development, less opportunity for infection, a month or more less time spent in the ICU, and no 4-6 months of chronic hypoxia or low oxygen perfusion. Sean and I would also feel much better taking her home to Johnson City from Nashville, as after the valve and artery graft she should have normal oxygen levels. 

We are trying not to get our hopes up, as very few babies are candidates for skipping the BT shunt surgery. We won't know if she qualifies until she is here a couple days or so. In the mean time we are focusing on ensuring she stays in-utero until her scheduled inducement date of December 16th. While there's not a lot we can do on this front, we are monitoring her very closely. That means while here in Johnson City I am having weekly ultrasounds, biweekly midwifery, and non-stress tests. At the first sign of labor or fetal distress we have to head to the hospital here in town and on to Nashville. 

So all in all we are praying she continues to be a little rock star baby and just stays put like she needs to. 

Thank you all for the continued thoughts and prayers for our sweet baby. I know that many babies are born into far worse circumstances than our little one and thank God every day that our little one will be provided a fighting chance at life. So we really appreciate the out pouring of love and support shown to us and Avelyn more than I could ever express. It is amazing to see how many lives she is already touching before she has even entered this world.

On a lighter note we learned that Avelyn is already flexing her weirdness muscles. She is currently head down in utero but also has her feet and hands up next to her head. Her strange positioning made getting decent images difficult, which has become a pattern for stubborn girl.

In some of the images you can see her little foot on the left side of her forehead :)


  1. It's amazing how much of a little person they already are before they're even born. Bella was so active and stubborn. Which has proven to still be true these last few months. Little Ms. Avelyn is a fighter. I think her ability to overcome any odds will be miraculously astounding! Love you guys & praying for you. ~Becky

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