The last few days have been rough. I was off yesterday and had a playdate with a couple of work friends. The drive there, the drive home and the evening that I spent alone (Ryan worked until 9:30 last night) were torture. I am having a hard time with the waiting game, not knowing what is going to happen and I drive myself crazy thinking, researching and planning for outcomes that I don't know will happen. There are several things we are waiting on and I'm afraid none of those answers are going to come soon or provide us any black and white answers. The first is the further chromosome test. They started running it last Wednesday and it's a 10-17 day test. That test is looking at the 13th chromosome to see where the deletion is which can provide some insight to how bad this is. We're also waiting on the fetal echocardiogram which will tell us if our baby has any further heart defects other than the ventricular septal defect. If baby has more heart defects, it's not good. We also have to find out about the encephalocele, the opening at the back of baby's skull. The encephaloceles have many different outcomes, all the way from stillbirth to normal functioning. In the best case scenario, our baby has a small encephalocele that contains CSF only but it is likely that it will contain brain tissue.
My heart wants to believe that God is going to create a miracle with our baby. I've prayed over and over that He will fix our baby. My brain knows that He has a plan that is already in place and we may not witness a miracle with our baby. I'm so afraid to hope for a miracle because I think that will just make it so much harder if our baby isn't okay. My mind wanders and I think of our baby grown telling stories of how he/she is "normal" against all medical odds, living proof of the miracles our God can do. I know this isn't likely, but I am not sure I can give up that hope. Not yet.
We have several appointments coming up. On Tuesday, we meet again with the perinatologist. They'll do the fetal echo to look closer at the heart and they'll look at baby's anatomy again. I'm hoping they can tell us more about the encephalocele and how good/bad it looks. We'll also find out how baby is growing (we were 4 weeks behind on growth so I'm hoping baby hasn't fallen any further behind). I feel baby quite a bit now and Ryan and his sister have been able to feel the baby too. I'm hoping baby can keep growing and get strong. My preceptor told me last week that I was looking bigger that day. Now most pregnant women don't want to hear that but that made my day :) If I'm getting bigger, baby must be too, right?! :) Grow, baby, grow!
Next Friday we meet with the perinatal palliative care program with Blank Children's Hospital. I think this will be a good thing for all of us. They'll help us with whatever the outcome is and help us with the referrals we may have to do. They'll help us with the kids too, and talk to Tanner to help him cope with all of this. Leah doesn't have any idea what's going on obviously, but they'll help her, too.
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