Beautiful, Yawning Baby Girl (24 Weeks)

This is my first entry, I have to say, my wife has explained this experience very thoroughly and is going to be tough to follow.  She has been so amazing through this, I can attest that this has been the hardest thing I could imagine going through, then to try and imagine it for her, is almost too much.   Yet, each week she continues to exemplify amazing strength and tenacity, so amazing, I feel I could fuel hope with that alone. Luckily, we have been blessed with such amazing support from family and friends. We can't thank all of you enough for the support you have shown.  As we have said before, our little girl has mountain to climb and if you find yourself with any extra positive energy to send out, she can only benefit.

This brings me to our appointment today.  We went back to the University, today at the Riverside campus, where we received her initial diagnosis (at the High Risk OB).  Alli had a level 2 ultrasound and another fetal echo.  Dr. Williams, the OB who was at our 20 week ultra sound/initial diagnosis, was with us during the ultrasound. We learned that our baby girl is growing well and is about 5 ounces short of 2 lbs.  They took a lot of good pictures and we got a few glimpses of her face in 3-d. She is adorable, and we even saw her "yawn" while resting her hand on her brow.  Seems she has grown a little tired of all the attention.  I think Alli and I both agree, these weekly appointments are straining, but without knowing what lays ahead, its a little bit of time to see our little girl, resting, kicking, spinning, and yawning.....my favorite part of these appointments!!

Dr. Williams said the baby looked great growth wise, and  her heart rate is still stable at 46 beats per minute. However, he noticed that she has begun to develop "ascites" which is fluid around the abdomen and "pericardial effusion" which is fluid around the heart.   It was a slight amount in each of the areas, but, because fluid was found in two areas, Dr. Shanti said that"hydrops" is evolving.  Also, with the baby growing, her heart has had to work harder.  As a result of the this, her single ventricle has become dilated.  Additionally, Dr. Shanti finally received the results from our trip to Madison, and they believe the baby has Long QT Syndrome, but will not be able to confirm this until they can do an EKG on her when she is born. 

What does all of this mean for her? The Long QT Syndrome, which may be associated with her heart block will be treated with pacing once the baby comes. So, they are looking at the Long QT as more of a "secondary" issue. What we are more concerned with at this point is the evolving "hydrops" and the "dilated" ventricle.  If these symptoms worsened  it could lead to heart failure.  So we have a new possible game plan beyond waiting...

Today they gave Alli a shot of betamethasone, which can pass through the placenta and will help with Baby's lung development so they are that much stronger if she comes early.  On Friday she is going to begin taking dexamethasone, which we hope may decrease the fluid build up (in her heart and tummy) and let the baby stay in utero in order to grow big and strong for surgery.  If the dexamethasone does not work  and the doctors feel the dilation and the fluid are getting worse they plan to take her through cesarean as early as next week (our next appointment is next Wednesday, July 1st and baby will be 25 weeks, 4 days). There are a ton of variables if this happens, the one thing we know, is an external pacemaker will be placed as soon as possible to get her heart rate to a normal level (FASTER!) and then everything else that goes along with bringing a 25 week old baby into the world.  Her first heart surgery, The Glenn, would not be until she was 2-3 months old.

I think it goes hand in hand with going to Riverside...things change.  Our first 3 weekly check ups at the University were all very stable.  But here we are, we are doing a lot today to process all this information and trying to ground ourselves with what is forthcoming.  Quite possibly, our baby girl, in a week.  There is a huge part of me that can't wait for her to get here and let the surgeons fix her heart that is working so hard, and there is also the realist that knows how well she is doing with Alli and wants her there as long as possible.  Quite the conundrum. I guess we have to put faith in our little girl and what the doctors think is best for her when that time comes.

I can see that this post is rather long winded, but, I can be that way.  Again, we can't thank everyone enough for all the messages, calls, and good thoughts for our little girl.