My most hated phrase in the English language?
"we'll have to wait and see"
We went to the perinatal doctor and geneticist today. It was just one of those well, she's in there so let's just 'wait and see'.
It's difficult to reconcile what we see with what we know. From the ultrasound she is just a baby. You can see her moving and wiggling and playing with her feet. But we know things are not good.
The geneticist said that the results came back full trisomy 9 but there is no way to completely rule out mosaic trisomy. (which just means only some of the cells are affected). They felt pretty confident it was full though.
Her facial features are completely normal though. Many of the trisomy 9 babies we have seen ultrasounds and pictures of are severely deformed. Gracie seems to be normal. Her feet might be clubbed though.
In researching medical journals we have only found two cases of full trisomy 9 babies born alive. There was a set of twins in the 80's that were alive for a few hours. From the findings they looked to be SO much worse off than Gracie. One didn't even have eyes.
I guess we will let her and the Lord decide what she does and love her for as long as we have her. I don't want to keep her alive unnaturally (like only able to live hooked up to machines), and we and the doctors won't opt do major surgeries if it will only extend her life by days. I don't think there is any reason for her to go through the pain.
All we can do is love her and 'wait and see'.
I agree. There is nothing worse than waiting!!!
ReplyDeleteThis sweet little angel is already so loved. She has already completely stolen our hearts.
Oh em I'm so sorry you have to be put through the anxiety of waiting!! I am keeping my fingers crossed she's a breakthrough case, one for the medical journals, go Gracie go!!
ReplyDeleteEmma, thank you so much for having this blog set up. This reminds me so much of what Lance and Melissa went through. I can tell you, that meeting their baby was the most spiritual experience I have ever had. THE MOST amazing feeling came over me and it was as if the Savior was there, with that sweet baby girl and her family. I am so thankful they were willing to share her with us!
ReplyDeleteWe love you more than words can express. Please keep posting. Love you!
Dear Emily,
ReplyDeleteI recently found your blog and wanted to let you know that my thoughts and prayers are with you, which I mean earnestly and in all sincerity. A dear friend of our family had two daughters who both had partial trisomy 16, partial monosomy 9. I thought you might like to see her blog and possibly connect with her: http://booferd.blogspot.com/. My best wishes to you and your beautiful family.
I've been thinking about you guys and just thought to see if there was an update. I'm thinking and praying for you and for Gracie and those sweet boys of yours. Much love!
ReplyDelete