August 31, 2009

It's been a while.

Yes, as my title explains it it's been a while since I have been here. As I write this I think about how my baby girl will be turning one year old in two days!! I can hardly believe we have made it to this milestone but I am extremely happy. As you are experiencing the NICU/PICU the time just drags and your only goal is to get home with your baby. Thankfully I have been home with my baby now for almost 11 months, we lived in the hospital for one.

Lot's has happened since I've posted, we've been to a few cardiology appointments, Alexa's fantastic surgeon moved, we attended his going away party along with many thankful families, Alexa has continued to meet all her milestones, she is crawling, pulling herself up, standing unassisted for a few seconds, walking along furniture, pointing, clapping, learning and using sign language, saying a few words and the best news of all is that her next surgery that was suppose to be done in September has been pushed back to the Spring!!!

This was the best news ever as the docs explained it has the potential of eliminating another surgery down the road to replace her conduit, since she will be bigger by then she will get to have a larger conduit put it and thus it will not have to replaced as quickly. The only downer to this is that she will continued to be considered "unrepaired" for another cold/flu/rsv season and for her any respiratory infection could land her back in the PICU on oxygen etc. So docs told me we have to spend another winter pretty secluded and vigillent with hand washing, hand sanitizer etc. Thankfully she has not been sick at all this past year, besides a very mild cold, but now having two kids in school with opportunities to bring home all types of bugs plus with the dreaded swine flu making a comeback I am pretty nervous but I will do my best, pray and hold my breath. Alexa's oxygen saturation levels are currently low 80's, we have another sat check and echo coming up in a couple weeks. Docs want to make sure her sats are not dipping down to quickly as this could change the plans. Please pray her sats stay in the 80's until at least the Spring.

I also wanted to take the opportunity to share a few pics of Alexa. I know as I began this journey, seeing other babies thriving in spite of their CHD filled my heart with joy and hope. So a couple of these are a little dated but just wanted to share. Of course, like any proud momma, I will be updating later with her one year old pictures. Enjoy!

Alexa 6 month's

Alexa's first Spaghetti

And more a recent picture of our family at the beach earlier this month, all happy and grateful as you can see ... we've come along way.


  1. Happy Birthday Alexa! (I know I'm a few days late. Scarlett had her surgery at St. Joe's, her cardiologist group is the "Scott & Laura Eller Congenital Heart Center". Thank you for posting on my blog, I added Alexa's blog to Scarlett's blog. Please feel free to write me anytime.

    Your fellow heart mom friend,
    (mom of Scarlett TOF/PA)

  2. Your daughter is beautiful! What a little fighter, thank you so much for sharing her story. I will be praying for her.

    My son has a CHD as well, his story is on my blog. I love your CHD buttons, where did you find them! I have to add them to my blog too.


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