Waiting...

I am finally established at all of the various centers I need to be seen at. There are a lot of cooks in this kitchen! We met with neonatology and pediatric surgery at Children’s last week; two weeks before I met with the high risk OB at Barnes. This is in case I go in to labor before I get to Florida. I also need ultrasounds every two weeks until I am in Florida. They are checking for growth, extra amniotic fluid, and ‘hydrops’ in Anya.

Pregnancies with CDH babies can have too much fluid, it can get to the point that it makes your body think the baby is big enough to be born, and can put you into premature labor. They can treat this if it becomes an issue, so far, I have been fine. Hydrops is extra fluid in Anya,  it can indicate heart failure. I don’t know how common this is, but I don’t worry about it much.

Except when I am in the ultrasound room and I nearly go into a panic attack.

 Many women with CDH babies talk about how much they like the frequent ultrasounds, getting to see the baby so often. I hate it. I like seeing her face, but every time I see how far her heart is from where it should be it is like I am seeing it for the first time again. I just want to reach in there and fix everything. It is agonizing waiting for the doctor to come in to tell me everything looks the same. Every time I have gone to an ultrasound or an appointment with one of the CDH specialists I am a mess for a few days.

I talked to the Ronald McDonald house this week, and I am really excited about it- for $10 a night you get a room with a private bathroom, a community kitchen with some snacks and drinks provided; they also try to have a complementary dinner every evening. There is free Wi-Fi, which is fantastic for Adam, he doesn’t need to worry about how much memory he needs when he works- the mobile hotspot he was figuring he would need to use is very limited in memory- and he works with some really large files every day. They are very close to the hospital and have a shuttle service.

So now there is a lot of waiting. I have something like 40 days until I need to be back in Florida, not that I am keeping track. Working on her room, getting a bunch of house projects done, trying to figure out how to transplant our household for 3 months. Spending a lot of time with Arwen, trying to explain what is going to happen.

 I think Arwen understands more than she is able to say. I found a book on premature babies for young children, that had realistic drawings of a baby being intubated, having a lot of IVs and getting tube feeding, it is told from the point of view of a little girl, and it is in very simple terms. The possibility of the baby dying is even brought up in a very gentle way. Arwen hasn’t discussed death yet, I am not sure if she understands the concept, but it cannot be forced, she will understand in her own time.

So that is where everything is right now, just waiting and hoping nothing too exciting happens! Hoping we get to Florida with no problems. After I get to Florida I will feel like I can relax a little, before my life revolves around the NICU!