"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Tuesday, June 25, 2013

Good News

We had some great news yesterday at the St. Louis Fetal Care Institute - Charlie weighed in at 5lbs 5oz which officially makes him a candidate for the first surgery (Norwood)! And his echo (heart ultrasound) showed that he continues to have good blood flow in utero and is currently showing no signs of heart failure or fetal distress. We still have lots of hoops to jump through between now and his arrival including weekly biophysical profiles and non-stress tests, not to mention a safe delivery.
Assuming we make it to 39 weeks without complications, I'll be induced then.  The average time between delivery and the Norwood procedure is about 5 days.  Mortality rate for the Norwood is around 15% which is pretty remarkable considering the surgery is only about 25 years old.  But one of the key factors predicting success is weighing over 5lbs....so we can check that off the list!  The next goal is to get to 37 weeks which is when most doctors agree that fetal lungs are developed enough to function on their own.  Since Charlie will spend 6-7 hours on a heart/lung bypass machine during that first surgery, we want to make sure the lungs are functioning as well as can be when the machine is turned off and the responsibility falls back on his little body.
Thank you all for your prayers, well wishes and financial support as we continue on this long journey of raising a heart baby!
Charlie's Birth Heart

Charlie's Heart after the Norwood Procedure

Tuesday, June 4, 2013

When You Know Support Is Vital

Last week I was blogging about how blessed we've been to have the outpouring of support from our family and friends.  We have Charlie's GiveForward Page still up and running thanks to our cousins, my MOMS Club has jumped at babysitting opportunities while I attend doctor appointments, friends have dropped gifts and baby supplies off at our house, and we know that Charlie's grandparents will all be around immediately following his birth.  Really, can we ask for much more?

In short, yes. Right now we feel like we're holding steady.  There is certainly a mixture of emotion on any given day in our house, but overall we seem cool, calm and collected.  My emotions are pretty under control right now and despite a sleepless night or two along the road - I feel like I'm doing all that I can at this given moment for Charlie.

All that being said, we reached out to a family counselor this week.  Matt and I met with her already and shared Charlie's story, some of our concerns and where we are emotionally. Over the next few months we will continue to meet with her so she can help us face our fears, discuss our expectations and help us process the fear of the unknown. She will meet with the boys next week also.  I think this is going to be sooo important for our family.  The boys are super excited about being big brothers, but the reality is some of those 'big brother privileges' won't be available right away.  For example, we don't know if they'll be able to hold him before surgery and there will most definitely be no bottle feeding until at least 2-3 weeks following surgery.  We know we will get through this as a family, but it never hurts to have someone extra in your corner cheering you on!

I tell people all the time that I have expertise in college student social-emotional-mental development and if they ever need help in that realm...I'm their person!  That being said - I certainly don't have expertise in toddlerhood, crisis management or family dynamics.  But I know how to find people that do!  Thank God for the ability to reach out to others in need!