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.
Please know you continue to be in a stranger's thoughts and prayers. I wish you peace and strength during this trying time.
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