This is an urgent prayer request.
As many of you know, we were in Seattle this week for appointments with doctors and surgeons there. We went with the expectation and anticipation of hearing what we’ve been hearing – being there at 36 weeks, a confirmed plan of action for the Norwood Procedure, hopefully a 2-3 week recovery time, and then back home.
They did their own round of fetal echos and ultrasounds and afterwards we sat down with a high-risk OB, Dr. Delaney (a wonderful woman who made awful news a little more bearable), and the director and chief of Seattle Children’s pediatric cardiology, Dr. Lewin.
The short of it is that Grace has gone into heart failure and is in “severe distress.” She has fluid collecting around her right lung, stomach, and in the placenta, which also places me at risk for preeclampsia. Her heart rate has also dropped from my last appointment. As you know, at my last appointment, five days prior, she had no signs of heart failure. This is a drastic change in a very short amount of time. Dr. Lewin said he’s very concerned and his expectation is that she won’t make it much longer.
Agh! I hate even typing that. How can you you type out the reality of your heart shattering in a thousand pieces?
He said her condition is so rare that in the last five years his team has only had two cases of it and only one baby made it. Because of that, her only chance for even possibly making it after birth is to make it to at least 37-38 weeks. But at this point, at almost 27 weeks, because she’s already experiencing severe heart failure, he’s not very hopeful.
Right now, they’ve changed their plan of action. They want us there at 34 weeks instead of 36, and because of the complexity of her surgery, we will likely be there at least 3 months.
If we can make it to full-term, he said that she will determine what is the best plan of action for her – the Norwood Procedure combined with a pacemaker implant (extremely complex surgery with a 50% survival rate as I’ve already mentioned), or a sort of hybrid procedure that would hopefully sustain her for a heart transplant in which, on average, the wait for babies is months.
Every direction and option is excruciating. We want our baby. We don’t care what we have to do for her and we’ll do anything, we just want her here with us.
She needs prayer desperately. Ultimately it’s God who gives life and he isn’t dictated by the odds. So please pray for the following:
– That her heart rate would increase and be enough to sustain her to full-term without any more heart failure (fluid collecting anywhere).
– That she would not need a heart transplant.
– That they would be able to perform the Norwood and the pacemaker implant and that it would go well and be successful. So much so that the surgeons would marvel for years to come, and to God be the glory.
– For life for Baby Grace. That by God’s power and grace, she would defy every odd stacked against her right now and would make it to full-term and through the subsequent surgeries and that we would have life with her.
Please, please pray with us for her.