Sunday, January 22, 2012

Cath and lately

It's been busy around here. Bela's cath went really well. As well as it could've gone probably. I stayed home with Ruthie in the morning and Tanner took her and actually sent her off before I got there. Normally, that would've never been ok with me, but I have to admit that it was actually so nice to not be there for that part. They gave her versed before they took her back which made her totally loopy.. I got some great video of her as happy as she could be. Tanner said she just waved bye to him and that was it! She came out of anesthesia so much more calm than last time too, and woke up much quicker. She was so thirsty she chugged her sippy cup of water, then threw it all up but immediately wanted more. She was not happy when she had to wait. We got to come home that night and we were all so glad to sleep in our beds.

Labs drawn at the cath came back with crazy thyroid results, possibly what was causing her lack of appetite and tiredness. We've been changing up her dosing and trying to get her back in the normal range. I took her to get her blood drawn last week and her TSH was still way too low. I have to take her in again tomorrow and hopefully we'll see some improvements. I think we will...the last two days I feel like I've had my Bela back. She had a fabulous day today, was her usual funny, happy self that I havn't seen in a couple months. I felt so happy today!

We met with Dr. Nigro her amazing heart surgeon on Friday to go over the details for her surgery. While some of it went over my head, I did understand perfectly when he said her oxygen sats should be in the 90's when this is over and possibly close to 100 in the months following! I'm so anxious for her to feel the increased oxygen and feel more energy as a result. Beth also said that regardless of weight issues and thyroid issues, heart wise she is in great shape going into this surgery. Her pressures are low and her function continues to be nice and strong. Music to my ears... hearing that has kinda given me a high all weekend long! I needed to hear some good news! Dr. Nigro is confident he can repair her leaky Tricuspid valve too and that she'll do just fine during the surgery. It's the recovery that can be so hard... BUT, we'll deal with that one day at a time when that time comes.

We also decided to put her G-tube back in to give her some help with her nutrition. She hasn't been eating great, and it'll help her be stronger going into surgery and help her through the recovery as well. She has good days and not so good days with eating, and this way, we can help her out a little on those not so good days. She's trying her best, but some days she just dosn't feel good enough to want to eat much. I was very against this at first, but in the last week I have had so much clarity and reassurance about it and I know that it's the right thing for her.

So the plan is to get her thyroid back in balance, get the G-tube in this week, and get her strong and ready for a March 5th Fontan procedure and tricuspid repair. Piece of cake, right?! I'll be happy when April comes around..:)

Monday, January 9, 2012


I feel a little bit like I did before Bela was born...waiting and anticipating something that scares the heck out of me. I've know that 2012 means Bela's 3rd surgery. It has been nice to have this break, but now it's time (sigh). Bela goes in tomorrow for her pre-fontan cath. It's her 4th cath, but it never gets easier for me. Hopefully it'll be quick and easy and they'll get a really good idea of what they'll need to do during surgery.

I'm not sure what is going on but Bela hasn't been herself the last few weeks and anyone that knows her can see it. We took her in a couple weeks ago and she had an echo that looked normal and drew labs that also all came back normal, but... She is much more tired and lacks the desire to do much of anything besides read or watch movies. If we go on an errand or go outside she lasts a few minutes and then asks to go back home. So we havn't been doing too much lately. I'm not sure if she just keeps getting sick back to back (she is constantly snotty) or maybe she just needs the surgery. I'm hopeful that the Fontan will at least make her feel a little better? I always wish I could take her load for her sometimes, or just for a few moments feel how she feels, so I knew what it was like. I wish I could let her have my whole, perfect heart from time to time so she could go outside and run around and keep up with her friends.

Lately I feel kinda stuck in my own life.. I feel paralyzed sometimes by my worries. I don't really know how to describe it, but when she's struggling, or when I think too much about her surgery I just sorta function at half speed. I need the strength I get from getting on my knees frequently.

So 2012.... here we go. Please be good to my baby girl...