New Cath Plan

We called Addy's cardiologist last week because since her MRI, she has progressively worried us more. Our Addy has never been much of a napper, but over the last month, she is rarely awake anymore! Our typical routine has been that she sleeps until about 9am usually until I wake her up. She eats breakfast and by 10:30 she is ready for a 2 hour nap. About 12:30-1:00 I wake her up and she eats lunch, then a snack about 2:30, then it's back for a nap from about 3-5. She is awake then to eat dinner and by 7 she is ready for bed again. So on average over the last month she is only up about 5 hours a day! I have had trouble even getting 3 meals & 2 snacks a day into her because she is sleeping so much. She is resting much more often while playing, sometimes she just lays down on the floor mid crawl and rests- this never used to happen. She also is much more cyanotic while drinking and gasps to catch her breath. Six weeks ago she was taking 5-6 steps on her own at a time, but since then, she has completely quit trying and just has reverted to crawling Although increases in sleeping can be attributed to growth spurts, over the last month, she hasn't even gained 1/2 pound. That is also significantly down from what she has been gaining, which is probably due to less intake and harder work.

So after calling cards last week and basically demanding a sooner appt, and taking her to the PCP in the mean time to prove that she wasn't otherwise sick, they saw her today. Basically we know that her L-PA is small (3mm) and was going to need to be augmented. However, they were hoping to wait and augment it with an early Fontan. Our cardiologist explained that a lot of times kids can have small PAs and never even be symptomatic, so there isn't really a reason to explain these changes. However, we know our child, and this isn't her. I understand that children this age wine and have a certain amt of difficultness, but we can't even take her anywhere bc she is so tired she makes everyone miserable with squealing and crying nonstop. Luckily, our cardiologist does trust our judgement and after over 1 month of this, she feels that the safest thing is to go ahead and move up her cath date. They can get pressures at the very least and make sure that everything else is ok and their is no cardiac reason for this- or if their is then hopefully discover and fix it. Although this means a sooner procedure, it actually somewhat puts us at ease. My biggest concern is that Heath and I watch our daughter slowly work harder and tire out over the next 4 months, then go into cath or surgery week because she has lost all of her reserve. We know now that she is strong, and she will do good, but I'm not going to watch her suffer and then have them tell us she's too weak for intervention 6 months down the road.

Ok, enough update about the sad and depressing stuff- now I want to update everyone on what good things she is doing! Addy is quite the little talker- so far she says uh oh, no, yes (just tonight!), mama, dada, I did it, hey there, kitty, stinky, & hello! OK, so these aren't always crystal clear, but you can definately tell what she is saying! Even though she isn't walking free-style, she is breaking speed limits in her walker, and her favorite thing to do in it is run full speed ahead! She knows where her belly button is. She still loves to eat everything that is put in front of her, and usually wants to feed herself.

She wasn't too sure about it to begin with, but once I put her in my lap, it was on like Donkey Kong!

Beloved Bearie, her security object, he stinks to high heaven, but she loves him! Even in sleep, he is nearby!

Those big blue eyes, who could say no to her! She really enjoyed her cake for her 1st Birthday!

I have talked to other heart parents and read blogs where they often cite the same things that I think and feel everyday. Every single day, I think about the future and what could be. I kiss my daughter and hug her every chance I get because who knows when their won't be a tomorrow. Every smile and new thing I want to take note of and remember. I don't ever want to take her for granted or quit being amazed at what she can do. Every picture helps me remember every moment that I can. I want Addy to know how hard Heath and I will fight for her, and when she gets older for her to be able to fight for herself. I want her to grow up to be a strong, independent woman. I want her to be able to have a family, fall in love, and have a child. I don't know if all of these things will happen, but I thank god for today, and for tomorrow, and pray for thousands of tomorrows to come. And this is why, with the fierceness of a mother bear, I will fight for her every step of the way. I am a heart mother.