Thank you all for the words of support. I wanted to write back to each of you, but I literally think this is the first time I've had my computer open since we've been home. I still plan to try. I should be napping as it's also one of the first days since hubby went back to work that both of the girls are sleeping at the same time, but I have too much bouncing around in my head that wants to come out.
Birdie has been doing great. She went to the pediatrician and the cardiologist last week and they both said she's doing really well. The cardiologist warned us that she may have a relapse at some point and experience SVT again. She may need to be re-hospitalized to figure out her meds. So I know it's possible and I hopefully won't be as scared next time because I know what's happening.
I can't help but worry though. I'm a worrier by nature, when I have nothing to worry about. So now that I have something to worry about, watch out. I check Birdies heart multiple times every day. If she's too sleepy, not eating as much as I think she should, if she feels cold, if she's overly fussy. Can you see how this could lead to a lot of checking since she's an infant and this essentially describes every infant out there at some point during a day? I worry that she seems smaller then Bean was. That maybe she didn't grow as much in my belly because she was fighting this. I worry about going back in the hospital because I feel like we can't keep asking my dear friend to stay with Bean and hubby has to work. I don't know what we'll do if I have to go back to the hospital with Birdie for an extended period of time. I worry about Bean. The cardiologist suggested we get her tested too, since this is an inherited disorder. On top of all that, I'm struggling with the reality of having two little ones. Yesterday Birdie had an especially fussy day. Bean was incredible and didn't seem to mind at all that she had my attention in very small bits and pieces, but I felt like I was flailing. Like everyone else has this mama thing figured out and I'm struggling.
I could go on and on. I'm exhausted both mentally and physically and I haven't really had a chance to let my guard down. At the hospital I felt like we were in a fish bowl. Our room had a window so that the nurses could keep an eye on Birdie at all times. There were moments when I wanted to just sob because I was scared or worried or just tired. But I didn't. I leaked tears down my face a lot. Especially when they were trying yet again to get an IV in Birdie. But I never just let down and sobbed, which is out of character for me. I remember sobbing once when I got in a fender bender, but I didn't this time.
I know part of the reason was because I was trying really hard to be strong for Birdie. If anyone had the right to cry it was her. She deserved all the sympathy and compassion. The only moments I felt like I could have really let loose and let it all out were when I was out of the PICU, which didn't happen very often. I would go for a walk occasionally while hubby was there and at those moments I thought I could release some of my emotions. Then I would walk down the hall and pass another room on the floor. There was a little baby in that room too. I never saw any other people in the room besides a nurse who was there all the time. This baby was hooked up to every machine you could imagine. I never saw it move. I could only imagine the horrible things that might have happened or what that babies family must be feeling. And then I thought of Birdie. Flailing and screaming as they put in IV's. Happily snuggling and nursing whenever she got the chance. She was going to be okay. It was scary yes, and I live my life by the clock now, always scared I'm going to somehow miss a dose of her medicine, but who cares. She's going to be okay. I can't say that about the other baby.
In the hospital, that was my reality check. Things could be infinitely worse. Now that we're home though I think about that baby a lot and it's more then that. You always know that bad things can happen to kids and babies. Being part of this community, you learn it very quickly. But actually seeing it. Seeing a little baby hooked up to all those machines, that brings it home. That's someones baby, and the terrifying part, is that it could just as easily be mine. So now I don't just worry about our current reality, in the quiet moments when my brain settles down I worry about the bigger picture. The scarier world that's out there. Maybe that's why I fixate on the clock and on Birdies current body temperature. Because those are things I can do something about. I can give her her medicine. I can check her heart. I can make sure I know everything there is to know about her condition and do everything in my power to have it make the smallest impact on her life as possible. But it's made a huge impact on me. I am incredibly grateful and always will be for the fact that what she has is very treatable and that she's going to be just fine. I've also seen more of the reality of the world though, and it makes me worry and hold my babies that much closer, wishing there was a way that my arms could protect them from everything.