Ultrasound Update

So this last Friday I had another ultrasound and met with the Maternal-Fetal doctor. Eva gained another pound; she was 1lb 12oz, so pretty close to 2lbs already. She only weighed about 12oz about 5 weeks ago. Her heart beat was great 156bpm and all her organs looked good and growing, I even saw some urine in her bladder. They measured her arms and her legs we saw her feet too, they look big like her daddy’s. And then, we looked at the brain and how it was developing and it looked the same, we could see the fused thalami and they showed me how a portion of her brain seemed to be missing. They also were able to show me her little cleft lip; they said that this is the facial abnormality that goes with the diagnosis. She was moving a lot during the ultrasound which was so weird to feel her twitch and see it on the big screen as well.
I spoke in detail with the doctor about all the information I had received regarding HPE and the clinical nurse I had spoken to in Texas with the Carter Centers. As well as the parents I had spoken to that were given the same diagnosis and their children. She was pretty clear that Eva could live as long as 8 weeks but she really had never seen any baby go beyond that, she told me that it is in rare cases that children survive beyond that. She admitted that she has not seen every HPE baby but the ones she has diagnosed, particularly with alobar holoprosencephaly (Eva’s diagnosis) have not lived. She wasn’t dismissive of my wanting to know more or of the information that I shared but nonetheless you still feel like you are going it alone. She reassured me that whatever the outcome UVRMC (the hospital that we are delivering at) had a wonderful and up to date NICU. We talked about Angel Watch, who I will be meeting with tonight. They will help me plan for everything; that includes from how to deliver to after delivery and depending on how Eva is doing whether we will be able to take her home or not and what kind of help is available. We also talked about delivery dates and I insisted that we would like to have her as far along as we can. Again, no concrete answers which we expected that, this is a complicated diagnosis and waiting is about the only thing we can do and plan the best we can with the information we have. Jose tells me that we only use 2% of our brain and if an adult had a brain injury that took out most of the brain (like with Eva) they would not be able to relearn everything they had lost. But with Eva she hasn’t learned anything and the brain is still pretty much a mystery. We don’t know what she might be missing if anything. I’m not sure what consolation this really is, but it brings hope.

However, I realize that leaving those appointments does affect me, I guess they are a reality check of what we are dealing with, some days I feel so strong and others I want to be carried. I guess Friday was one of the “carry me” days. I have to admit that I struggle with wanting to know why, “why exactly did this happen to her?” And as her mother and the one that is carrying her, the inevitable question of, “what did I do?” I know this is where my faith is challenged and tried. It is when you feel so responsible and helpless at the same time. As I stated before I have an appointment tonight with the Angel Watch people and another ultrasound on November 19th. Aside from the fibroids, which looked in good position, they have grown but are in good position. The next ultrasound will be monitoring Eva's head and brain, they worry with these children that fluid might devolop and cause the brain to swell, which will make delivery a problem. So they will monitor it to make sure that we will not have to deliver earlier than planned.

Family, friends, Jose and I need your prayers. Pray for us, that we may always be able to accept the Lord’s will; whether it is that Eva will live with us for some time and will have special needs or be it that we only meet her to say goodbye. Thank you for your thoughtful emails and messages they mean a lot to us!