Last Monday afternoon, we got the call with the test results. And on Wednesday we were sitting in the genetic counselor's office.
I didn't want to go. I didn't want to hear said out loud all the things I had been reading on the internet.
But ultimately I'm glad we went. While we did have to hear all the things I didn't want to hear, the counselor was kind and compassionate and she seemed genuinely sad that she had to tell us all of these horrible things about our baby.
We will go next Wednesday for an echocardiogram at Brenner Children's Hospital. At the ultrasound that was done a few weeks ago the technician wasn't able to get any good views of the heart. Trisomy 18 babies typically have heart problems so this echo will help doctor's have a better understanding of what heart problems we can expect her to have.
After the ultrasound, we will go back to the Comprehensive Fetal Care Center (where we had the counseling session) for another ultrasound to see how the baby has grown in the last month and to determine what other problems she may have.
We will have several more ultrasounds up through delivery to give the doctors the best idea of what we can expect at her birth.
The counselor is also going to set up a meeting with a neonatologist so that we can go set up a plan of care for our baby after she's born. Assuming she isn't stillborn, we need to have a plan as to how much action we want the doctors to take. Do we want no procedures done and only take care of her pain levels and insure that she is comfortable or do we want them to take every possible measure they can to keep her alive for as long as they can. Or do we want something in between. This plan is put into place ahead of time based on what is seen in the ultrasounds and other tests and knowing that these change at delivery. But it's better to have a well thought-out plan in place before delivery so we aren't faced with as many questions right after delivery.
We talked about a lot of other things.
We talked about her being able to stay in the room with me immediately following delivery if possible while I'm being sewn up from my C-section. My biggest fear is that she will be born alive and only live for a few minutes and that I won't be able to hold her because I'm still on the operating table. The counselor assured me that the doctors use different procedures with babies that aren't expected to live long to allow family as much time as possible with them.
We talked about the kids being able to hold her if she's born alive or just being able to see her if she's stillborn.
We talked about the photographers that the hospital have available to take pictures of the baby right after she's born if we want that.
We talked about having a priest in the delivery room.
We are still praying for a miracle but we are making plans as if we don't expect one. That feels wrong to me. Like I don't trust God. Like I don't have the faith that he will heal her. And I guess while I know that he can heal her, I'm just not sure if he will heal her.
So we are praying for the best and planning for the worst.