A Glimmer of Hope

I'm home from the hospital!  Back to bed rest at my parents' house for now.  We finally got an update on Sara's condition.  Here are the details...

7/16/14 - Wednesday 

24.5 weeks.  So yesterday was quite the day.  Dad came over at lunch time to chill with me.  While he was there, the nurse came in and said Maternal Fetal Medicine was ready to see me.  So, we called mom, and I got unhooked from the monitors and SCD's.  The nurse wheeled me down, and I started feeling very anxious about what we might find out.  I texted Reid to tell him I was on my way to the ultrasounds, and asked for extra prayers. 

We went right into an ultrasound room.  The tech reminded us that she couldn't tell us anything that was wrong, but that she'd explain what she was looking at as she went from head to toe.  It was so great to see Sara.  She is beautiful.  She was moving around a lot, as always.  Mom got there after a few minutes and joined Dad and I. 

Sara has all 10 toes, all 10 fingers.  She's measuring right on schedule.  I loved seeing her beautiful lips and nose.  It's amazing how much love I have for her already.  I love her so much. 

Dr. G came in after the tech was finished and showed us some things on the ultrasound.  There is no longer any fluid in her lungs or around her heart (effusions).  Her Right Kidney is still dilated some, about twice the size of her left.  The doctor was not too concerned about that right now.  Her cystic hygromas have gotten smaller, and she has some extra skin now on her neck due to them shrinking.  I'm so glad that more fluid hasn't developed, and that the cysts have not enlarged over the last few weeks.  Hydrops has not started to develop (fatal condition where fluid starts overtaking organs).  That was probably my biggest fear going into today.  

Sara's heart condition is officially called Hypoplastic Left Heart Syndrome.  All of the heart problems that were listed on the last radiology report are actually all part of that.  Her heart is compensating for not having a working ventricle.  It's pretty amazing what her little heart is doing.  There are a set of surgeries that can be done.  They won't cure the HLHS, but can restore heart function.  The first is usually within days of birth.   

Dr. G talked to us about delivering up at U of U, and meeting with pediatric cardiologists at Primary Children's hospital.  The fact that we're even talking about surgeries as a possibility is a huge step from where we came from - thinking she had a chromosome disorder and wouldn't survive.  We have been given a glimmer of hope now, which feels great.   

Now, the best case scenario, and what we're hoping, is for the microarray genetic testing to come back normal (probably a few weeks for the results still), for us to make it to 39 weeks to deliver so Sara is as strong as possible, and for Sara to have successful HLHS surgeries.  As promising as it is, it is still a really hefty and scary diagnosis.  Open heart surgeries are no small thing.   

We have a fetal echocardiogram set up at Primary Children's in 2 weeks, and will tour Primary's and U of U while we're up there.  Then I will continue to have regular check-ups with them.

For now, I will have ultrasounds with Maternal Fetal Medicine at UVRMC every 2 weeks to check for Hydrops, which could still develop at this point, and check on her heart.  As things progress, they will do Non-Stress Tests and such.  I'll also keep having regular check-ups with my OB.   

Now, as far as the placenta previa is concerned, the ultrasound showed that it is actually just low-lying now.  We were kind of shocked.  She said that it can still cause bleeding, obviously.  She said I can go home to bed rest now.  I will still have to watch for bleeding, but the placenta is far enough away that I won't have to have a C-section, and my risk has gone down a lot.  It should only get better as my belly continues to grow.  Even though I'm on bed rest, the doctor wants me to get out of the house for my emotional health.  Haha.  I can go to the movies or to dinner, etc, as long as I get dropped off at the front, and not walk or stand too long.  I can be wheeled around in a wheelchair.  :)  I'm happy about that.  

Overall, it was a day of good news.  I am so grateful.  

For the last 5 weeks I have not let myself picture us coming home with our baby girl at the end of all this.  After today I've been given some hope, where I thought there was none.  I know there are still several hurdles to overcome, so I'm still being cautious.   But what a gift to have some hope.