I've realized something about myself through all this - when faced with horrible news I absolutely shut down for 24-48 hours. I can barely function without tears leaking out of my eyes at the slightest thing. And after those 48 hours I'm ok-ish. I can not cry every time I try to speak.
So I called Denise (the fetal heart coordinator @ CHOP) back today to tell her thank you for checking up on us - making sure we got home ok. And I was able to ask questions.
I asked her if we could send Macsen's images to Childrens in Boston or MOTT Childrens Hospital in Michigan. Just because if the expert @ CHOP hasn't ever seen anything like Macsen's heart maybe another expert somewhere else has. She assured me they most certainly would do that and that today they have a big Wednesday meeting to discuss cases and all the CHOP experts would be discussing Macsen's case. She did say she felt there was still hope for him. We'll take that! That everything really depends on his tricuspid valve which they are calling dysplastic which just means "abnormality of development." And we just don't know what that valve will do through the rest of pregnancy and (if he makes it) after birth. We can't make any decisions now - we can't plan. We just have to wait and see. But we can still hope. I never realized how important hope was before I saw things as truly hopeless.
I told her I do want the reality of it though. I don't want it sugar coated. If he has no medical chance - no intervention that can be done or surgery that will help I want to know. I want to know now that we'll only have few days with him. I'll want to prepare myself, our girls, our families for it. Maybe some wouldn't want to know but I do. She assured me that they would be honest with me.
But for now until I'm told differently I'll hope that his heart can change, grow, still function. And if not he can maybe get a transplant - not a be all end all to his struggles as transplant comes with it's own set of problems - but it is still an option.
It's amazing what 48 hours can do.
"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit." (Romans 15:13) Love you! BWW
ReplyDeleteAlways praying for a miracle. Love you.
ReplyDeleteWe hope and pray... We so admire all of your strengh and courage. If we can help in any way please let us know.
ReplyDeleteLove
Davidd
You amaze me with your strength, your honesty and for keeping it courageously...simple. I love you so much, and we are praying for you and little Macsen... and for the experts who will be discussing this case. Maybe someone will think of something radical that they've never tried before... praying for a miracle. xo Gab
ReplyDeleteproud of you
ReplyDeleteBless you !
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