It can be so nice to live in a land of fantasy. Cinderella, Snow White, Goldilocks, fantasy football and the list goes on. Even though we don't believe in our hearts that life is "happily ever after," it has been nice to enjoy these past couple of years with Natalie being relatively free of concerns for her heart. She's been an overly energetic little girl with an attitude. She loves to tease yet can be tormented to tears by her older sisters. She's loving life and wanting to try everything.
But...she seems to be slowing down. I notice that she's wearing out a lot easier with activity. She'll be running around the house or in the yard and come over and ask to be held. "I tired," she'll say. I can feel her little half-a-heart beating rapidly through her chest and hear her panting breaths trying to get her body caught up on it's demand of oxygen. My heart aches for her as I see how hard she tries to keep up with those around her. Her will is willing, but her body ain't!
We had a regularly scheduled cardiologist visit this past week. Since Natalie's in a pretty fearful stage of her life right now, I tried to prep her about them listening to her heart and looking at it with pictures. Her appointment was in one of the satellite clinics (not Anchorage) so we were in a whole new office too. She did quite well emotionally.
She weighed in at 26.6 pounds so we will still be waiting awhile before the surgeons will be willing to do the Fontan procedure on her. Her sats started out at 72% and climbed to 77% after a couple of minutes. This was just after her walking into the clinic, not even running. So I know that when she is overly exerting herself she must be getting down there. No wonder she's getting tired.
Dr. Brauner did an echo this time. It had been a year since she had an echo down in Seattle. Overall her heart function looked good. He wasn't able to see the pulmonary arteries that carry blood to the lungs. They're really hard to see because of scar tissue. These can sometimes become narrowed where they surgically attach the SVC during the Glenn procedure thus reducing the blood flow to the lungs. While we know that the bigger that she gets, the more she will self-limit her activity, we may need to see if there can be some options to help improve her oxygen saturations if they continue to drop to the low 70's or high 60's before she's big enough for the Fontan procedure. (Click on Fontan to learn more, Mom) So, if Natalie's sats start to hang in the low 70s to upper 60's when she is resting, we'll be heading back down to Seattle for a heart cath to see if she can get tuned up.
Dr. Brauner turned Dora the Explorer on the little DVD player that he had while he was doing the echo. Natalie held really still until Dora started singing. Then her feet started to wiggle, then her hips. The wiggle kept working it's way up. She was trying to be still, but just couldn't. Dr. B. is a very understanding man and was impressed with how well she stayed put despite her interaction with the music.
The reality of her heart defect and it's impact on her life just hits me sometimes. I hate it when I see her get so worn out from her play. She has so much spunk that I wonder how she will handle not being able to physically keep up with other kids her age as she gets older. I know that what has been surgically done to her heart is just palliative. It's not a "fix." I pray that she will live a long and happy life with her own heart, but in reality most literature and cardiologists always bring up eventual heart transplant for a single ventricle person.
On a lighter note, Natalie has now moved back into her brothers room. The side-rail on her crib is off so she's learning to stay in bed like a big girl. It works well at night, but only because she hasn't had a nap the past couple of days (because she didn't stay in bed).
Her vocabulary has blossomed to the point that she is speaking in sentences now. Sometimes she gets the sentence structure mixed up, but is doing better. She still speaks jargon a lot when she is playing, but at least she has started to speak words to us and communication is going a lot better.
Natalie loves to dance to music. If you've ever seen the PBS show about Wilbur the cow, she has the same kind of wiggle when she listens to music as Wilbur does. It's so cute. It makes me laugh every time I see her do it. She can work our keyboard quite well and one of the songs sounds like a horse race. She loves to race around the living room when that song is playing. Of course, when she gets tired she runs over to me and asks me to pick her up...then I have to run the race holding her! We make a lot of memories running and dancing our way around the seclusion of our own home, just Natalie and me. I will treasure these times in my heart!
There are other things that I know I'm not thinking about tonight that I had wanted to post about her. Guess it will have to wait.
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