Not So Good News

I'm not sure yet what all I want to say, but here goes. We were told some not so good news today at our appointment in Iowa City. Apparently Claire's heart has gotten worse since the last time we were there. She now has a restrictive atrial septal defect and a very small aortic valve. These two things on top of the HLHS put us at very high risk. Her chance of survival is much lower (from 80-90% down to possibly 20%). She may not even be able to have the first of the three surgeries. We were told to prepare for the worst. We are no longer planning on her having the first of three surgeries during her first week of life, but are now playing the waiting game until she is born to see how severe it really is and what our options will be.

It's so hard being unsure of what the future holds. We are so thankful for our wonderful support system and all of the thoughts and prayers that we've received. We are also thankful for the many doctors that we've seen. They have all been very kind and open and honest with us, which is what we need right now.

26 weeks and Claire's room pics

I don't have much to update. We go back to Iowa City a week from tomorrow, so hopefully we'll have some more info then. We picked up the crib and put it together this weekend with the help of Brad's parents. Here's a 26-week picture and some pictures of Claire's room.

Apparently, I look a little puffy in the mornings.



Here's the crib and dresser. The walls are actually a really pale green.


Here are a few pictures for the walls. They match the sheets we have picked out perfectly.

Viability Day

Yesterday was viability day - 24 weeks. For a normal pregnancy, 24 weeks is a huge milestone. Babies born at 24 weeks have a 50-50 chance of survival, and the percentages only go up from there. Although I am so thankful to make it this far, I know that if our baby doesn't make it to full term, her chances of survival are quite low. If she isn't developed enough, she won't even be able to have her first surgery. Keep growing big and strong Baby C! We love you!

My Strength

My husband is my strength. The day we got confirmation that our daughter had HLHS, he said to me, "This happened to us because we are strong enough to make it through." He is so right. I've had days where I can't believe this is happening, and want to just start over, but he's been so positive and optimistic through everything so far, that's it's really helped me to be a stronger person. I know when the time comes for our daughter to be born and to have her first surgery, he will be there as optimistic and strong as ever. I couldn't do it without him. He's my rock.

I know this has happened to us for a reason. God chose us, because we have the strength, support and resources to get through this no matter what happens. We are truly blessed. The thoughts and prayers and kind words that we've received so far are more than I ever dreamed of. There are so many amazing people out there.