Today was our first Mommy/Daughter day! Ryan went back to Wichita today to take care of some things, so it was just me and Lia (ok, well there were A LOT of other people there, but we're not counting them...) When I got there, she was wide awake again, and the swelling in her face had gone down a lot! She is really starting to resemble herself again! Her chest and sides are still very swollen, but we're hoping that will go down some more overnight. During rounds, they informed me that they would be closing her chest today! I was very excited to hear that. However, as I sit here typing this, her chest is still open :( She had to use her pacemaker all day today, because her sweet little heart, isn't quite ready to do all the work on it's own yet, so her doctor made the decision to give her one more night with an open chest, and re-evaluate things in the morning.
What did our Mommy/Daughter day consist of, you might ask? Well, I sat and did a lot of staring. Lia did a lot of sleeping. There was also some skin caressing, hair stroking, me whispering to her how proud of her I am, tear wiping, sending a few pictures to daddy, and well, that's about it! May not be much, but it was enough for me!
Overall, it was a very good day. The doctors are still impressed with my little fighter, and keep telling me that she is far exceeding how they thought she would recover having a tet-repair at such a young age and on such a small body. (Side Note: Her heart is the size of a mans thumb). I'm not saying everything has been smooth sailing, but when you look at the big picture, she is doing remarkably well, and I'm so proud of her! Lia marches to the beat of her own drum, and clearly does things when and how SHE wants them to be done! Will this be a problem when shes 13? Yes, probably, but right now I'm just focusing on one day at a time :)
Here is a picture from today...you can tell by looking at her eyes how much the swelling has gone down.
What did our Mommy/Daughter day consist of, you might ask? Well, I sat and did a lot of staring. Lia did a lot of sleeping. There was also some skin caressing, hair stroking, me whispering to her how proud of her I am, tear wiping, sending a few pictures to daddy, and well, that's about it! May not be much, but it was enough for me!
Overall, it was a very good day. The doctors are still impressed with my little fighter, and keep telling me that she is far exceeding how they thought she would recover having a tet-repair at such a young age and on such a small body. (Side Note: Her heart is the size of a mans thumb). I'm not saying everything has been smooth sailing, but when you look at the big picture, she is doing remarkably well, and I'm so proud of her! Lia marches to the beat of her own drum, and clearly does things when and how SHE wants them to be done! Will this be a problem when shes 13? Yes, probably, but right now I'm just focusing on one day at a time :)
Here is a picture from today...you can tell by looking at her eyes how much the swelling has gone down.
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| I love spending time with my Mommy! |
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Craig & Ila