The top photo is a pillow from the hospital gift shop (that I just haaaaad to buy of course!). It is sitting on a couch next to the hospital coffee shop where Annelise's cardiothoracic surgeon, Dr. James Hammel, came to meet with Kevin and I in order to have the conversation where he explains his plans for the heart surgery, and the possible outcomes, both good and scary. I'm glad I got a photo of the spot to remember that moment.... since I didn't go dumpster diving for the napkin he tossed that he had quickly sketched, by heart, a super detailed drawing of her specific heart with her unique anomilies.🥰❤
There are so many layers to all the feelings I've had this past week. What I want to focus on now is the celebration of that moment in Omaha. Talking with a busy CT surgeon who would have a full schedule without all the babies with Trisomies who travel to see him from across the states.... but he still takes the time to be their voice. To share data and experience with other providers, so that other hospitals might recognize how far these sweet tiny people can go if they would just give them the same help that they would give another baby with the same condition who has 46 chromosomes.
Our story could have looked like us delivering Annelise locally, and not having the option for heart repair. We would have made her as comfortable as possible with the resources we had, and her little heart would not have been able to supply the rest of her body with blood. It would have tuckered out. There would not have been her 1st birthday celebration, there would not have been the stacks of memories we have with her. I would not know what it's like to see her face absolutely light up with an ear-to-ear grin after she gets a kiss on the forehead, her favorite, from her daddy.
I would have a lot of time in the day to get stuff done. My garden would look amazing. Forget that! Praise the Lord I have no time for my garden! I have a baby in my arms and she is absolutely our sunshine! Because Dr. Hammel and Omaha said yes. He repaired her heart, and the rest of those fine folks helped me with my heart as they set Annelise up for success and took amazing care of her every day for 99 days until we got on the plane to come home!
They said yes, Annelise is valued.
That's a cause for celebration as much as her successful heart repair!! Whoohoo!!!
P.S. Guess what! This past year, there have been some heart surgeries for babies with T18 and T13 at UCLA!!! Times are a changin'! Onward, let's go!🥰🤩😍❤
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