Thursday, September 22, 2011

Awesome Cardiology Visit!

Today was Fiona's 6 month follow up for cardiology and it went amazing. First off during triage we found out that Fi finally grew. Yes, you read that right, she is now 26lb 8oz and almost 35in tall. That means she's gained 4 oz and almost an entire inch in the last 2 weeks! After that we went to sit in the little regular room and waited to have her EKG done. She was such a good girl. When they came in and put on her stickers she just sat there and watched. She sat still and after she had fun putting the stickers on me.

After her EKG we went to the echo room. We brought her monkey pillow pet today, thought it would help her to be calm and relaxed for the echo and I think it worked. She chilled there for Miss Sarah, sometimes giving her some funny looks, but mostly she just laid there. She did have a mini-meltdown when they were looking at her aortic arch, she absolutely hates when they do this part of the exam. She started wanting to sit up and saying all done, but Daddy calmed her down with some Mickey on his Iphone.

When the echo was done Dr Yang came in the room to review the images and was really impressed with how well she's doing (although Fi was not impressed with him). He didn't feel that the weird heart beat sounds I heard were anything to really worry about since she's so active and everything else looks good. Her aorta looks good and pretty much everything is about the same as last time. The only issue that he mentioned today was that her BAV is about 10% more restricted than at our last visit, but since she won't have any intervention until it's in the severe range we get stick to the 6 month schedule. Everything went better than I could have imagined, I feel like we're finally in a calm stage and I'm so happy that surgery won't be any time soon. We are so blessed.

Wednesday, September 14, 2011

The Great Baby Dance Debate

For a while I've gone back and forth on this issue myself, but given Fiona's exceptional attitude lately I feel like she could really use an outlet. For her age it would still be a mommy and me class, but I thought it would be good for her to get to spend some time with other kids her age. She's not in daycare so she doesn't get much interaction with other toddlers.

For a while I had come to the conclusion that it wasn't worth the cost, and that we should just wait until next year. Then I realized she will be preschool age next year and I think that enrolling her in dance now will help social skills and make the transition easier.

Well I talked with her dad about it and he said, well she's got so much going on already with her heart, growth problems etc that he doesn't think it's a good idea to put her in dance yet. He also mentioned the obvious germ issue (esp w/flu season just around the corner). While I see where his thinking is I don't think that a dance class for 2 year olds will be that strenuous, I think it's more for fun. I'm just really surprised by his reaction because he's always the one saying that he just wants her to have a normal life, isn't this part of a normal life? I mean we can't put her in a bubble and lock her up because she has some medical issues.

I don't want to go against him, I just don't think that his concerns are very legitimate. Especially since even if we wait a year she will still be a heart kid. Realistically I think that everything that goes on with Fi really does bother him and that he is scared for her even though he always says that he's the optimist and isn't worried. His fears only come out in little bursts when a specific situation arises and makes him think about the fact that she is not a "well baby" .

Thursday, September 8, 2011

This Kid Won't Grow

We had nutrition today and I was hoping that we would get a good report. I really thought that upping her calories, starting her on the Breeze, encouraging her to eat more, etc would have helped, but she has just stalled. In March she was about 25lb, then she was actually losing weight for a while, now she is 26lb and has been for a little over a month. So in 6 months she's gained about a pound all together, which is not enough for a 2 yr-old.

She should be gaining at least a little each day, but this is not happening. She eats all the time, she loves almost every food imaginable, in fact there are only two that I know she will not eat, tomatoes and shrimp. Our nutritionist gave us a new cal powder to add to her food and drinks, hopefully this will help.

In two weeks we have her 6m cardiology follow up, and though they told me 2 months ago by phone that her lack of weight gain is not heart related, I won't really feel sure of that until they examine her. I'm also somewhat looking forward to this apt, because in going 6m I have more questions and concerns then I usually do because this is our longest stretch. I've also noticed in the past couple days that while Fi sleeps her breathing is sometimes noisy. A little worried by this I decided to listen to her heart and was a little freaked out by the pattern. It seemed to beat normally, then very slowly, almost stopping, then pause for a sec or 2, then slowly again and then normal. She had several of these pauses while I was listening. I'm not sure if this is within the realm of normal, or not, but I'm hoping to get some type of explanation when we see Dr. Yang.

Happy Game Day! Who Dat?!?!