Information Overload, a Grim Prognosis, and Turning to the Lord

8/1/14 - Friday 

26w5d - Last night I started bleeding more than the last two days.  The nurse shared my opinion that the docs probably wouldn't let me be discharged.  This rollercoaster with the bleeding is quite discouraging!  Well, this morning the OB and perinatalogist came in and chatted with me.  They were both in agreement that my appointment at Primary Children's is important for me to make.  They think I'm stable enough, that I'm reliable, and they know that I can get back to the hospital quick if I needed to.  They also noted that Sara's heart rate has been pretty stable.  So, they discharged me for now.  Yay!

Mom and Dad gathered my things in the hospital room, the nurse got discharge paperwork and took my IV out, then we were on our way up to SLC. 

I just don't get tired of seeing this mountain every day.  (view from the freeway)

Dad pushed me in a wheelchair once we got up to Primary's.  We were early, so we waited in a waiting room next to the Cardiology department.  It was a cute and fun room made for children.  It had games, crafts, toys, cartoons, a little playhouse, etc.  When it was my turn, we were taken to an exam room.  The sonographer was supervising a pediatric cardiologist while he did the fetal echo.  They focused mostly on her heart and looked at it in incredible detail.  After they were done, Dr. M (pediatric cardiologist) came in and looked at a few things himself, then they left us to gather ourselves and move to a small comfy room to chat.  What I'm guessing is usually a "bad news room".  

The first thing he went over is that Sara doesn't actually have Hypoplastic Left Heart Syndrome.  She does have a hypoplastic left heart, but it's due to what's called Unbalanced, Right Dominant, Atrioventricular Septal Defect, or AV Canal.  It causes similar problems to HLHS, and requires similar surgical procedures.  But, he said it's actually even more severe than the already severe HLHS, and survival statistics are lower with the Unbalanced AVSD than just HLHS.  Oy.

He said that with no other abnormalities, the 5 year survival rate with this defect is only 65%.  Since Sara does have other abnormalities, it throws a big wrench into things.  If the hygromas and hydrops miraculously go away, she makes it full term, and the placenta doesn't cause any issues (best case scenario) - he says the stats would be more like 50%.  If the fluid stays the same or continues to develop, or anything else worsens, stats would go down to very small percentages, like below 5%.  Surgery may not even be offered.  We won't know until it gets closer to delivery. 

He confirmed that surgery wouldn't even be considered before 32 weeks because she would be too small and underdeveloped to survive surgery.  Something interesting, he found that the fluid that is developing in her organs is actually not from heart failure, like we originally thought.  The part that would have to be leaking to cause that, is actually not leaking enough to cause that.  He said the fluid is either being caused by a genetic condition, or by the placenta.  He said they did see some abnormal flow going on from my placenta, which may be due to the abruption.  If it's placental, the fluid would disappear after birth.  Although the placenta issue could cause IUGR - intrauterine growth restriction - and cause things to be underdeveloped when she's born. 

For now, it's really the placenta and the fluid that are calling the shots for when she will be delivered, and what her condition will be at birth.  She won't die in utero just because of her heart defect.  Her heart is working ok in there, which is amazing.  I'll have another fetal echo in 4 weeks to check for an increase in leakage, or any other changes.  

It's quite amazing the amount of information we can gather before she's even born.  It's definitely overwhelming, and so much to process.

Despite the grim picture I may have painted with all the information we received today, Dr. M was really wonderful.  He was very sensitive in talking about Sara's condition and prognosis. He explained things very well and spent time answering all of our questions.  He recognized that we will have some tough decisions, and he also pointed us to some supportive resources.  

Emotionally, this is still quite the rollercoaster.  There are still so many possible outcomes, and many unknowns.  We will continue to take things a day at a time.  We will rejoice in every day we have with sweet Sara.  I'm grateful that she is active in my belly, and that I get to connect with her every day in that way. We will continue to put our trust and faith in the Lord.  He will lift us up, He has suffered for the pain and grief that we feel.  He knows how to succor us.  We will continue to turn to Him for peace and comfort.

Thank you so much for all your prayers, love, and support.  We still feel it.  xoxo.