Thursday, December 11, 2014

Wrapping Our Minds... Heart Stuff

In just a month we will be making our way back to Children's (and hopefully not before that!) for tiny P's heart surgery...

And right now we have no idea of exactly what that surgery will entail...

I've been trying to think of what to say, how to explain what we know, how we feel, and what the future holds for our tiny P.

When tiny P had her heart catheterization, one of the things the surgeon tested were the pressures in her Glenn (the surgery she had in China). The pressure is very important because it tells us how healthy her Glenn is and how her heart is doing overall.
Normal pressure would be in the 12-15 range, with 15-17 being the highest that her heart would be able to handle having the Fontan surgery that she needs. But tiny P's pressures were around 22, and while her pressures are this high she is not a candidate for the Fontan surgery.



What does this mean for our baby?
We don't know yet, but she has a surgery scheduled for January 14th, the surgery that we were originally hoping would be to place her Fontan. Instead, the plan for now is to repair a leaky valve, and whatever else happens during surgery will be up to the surgeon. This leaky valve is believed to be part of what is creating these high pressures, and our prayer is that once this is fixed the pressures will drop enough that she can then have the Fontan surgery done.

It seems most likely, after discussing tiny P's results with the cardiologist a few weeks ago, that our tiny P will be having quite a few more tests, and most likely more surgeries to come, to make her heart healthier, and our tiny P more comfortable.


So where does all of this news leave us?

For now, I have been blogging a little less frequently...partly because my spare time is spent researching and learning all I can about the things we have learned about our little girl's unique anatomy, and partly because I have been trying to make this holiday season as special and memorable as I can for my family. I am letting housework go to sit and snuggle with my babies and just talk, or watch a show. I am not crafting or working on projects because I am giving my toddler all the attention she wants from me, which is every single second she is awake, and when she is napping, I am trying to give my sensitive, stressed little guy all the affection he needs from his mommy.

We are enjoying our kids, and soaking up every single moment we have with our tiny P. We are doing our best to make beautiful memories for our family, and at the same time we are working on attachment, and dealing with two year old drama. We are trying to give little M and baby J the security of their routine, while also dealing with the many doctor appointments we have for our new little family member.  We are slowly finding our new normal, even knowing that normal will change very soon, and we are living... we are trying to live life to the fullest, because even though we could very easily give in to fear of the future, we know that every day is a gift, and we want our children to see us live, and love, with reckless abandon.


Tiny P is in great hands at Children's Hospital, and her cardiologist is amazing, and even though it is so hard to not have an exact plan, and to not know exactly what will be done during her surgery, we are trying to not be overcome with worry. The husband and I are both planners, and it is hard to plan for something when all the plans are tentative!

We love this little girl so much, and we are choosing to have hope for her future... God loves tiny P even more than we do, and he has brought her so far, and held her tiny broken heart in his hands for so long, and we are so thankful that we get to be her family!


5 comments:

Always wear your tiara said...

Tiny P will show the surgeons how strong she is as they do all they can for her little wonky heart. Soon, this will be a memory that you talk about on your road to forever happiness.

Bev said...

What a beautiful, heartfelt post. I read it with tears in my eyes and imagined that you likely were tearful as you put these words to screen while writing this. Tiny P is so blessed with such a wonderfully loving family. And, as your words so clearly tell us, you are so very blessed with the addition of this little person in your family. We think of you often, and Jenna talks frequently about missing her friend, so she is always interested to look in on your blog to see what your family is doing. We look forward to hearing about the joyful holiday memories you make as you are able to blog about them - wishing you the merriest Christmas!

Paula said...

Hugs and prayers! You are truly a beautiful example of what family is all about.

Musings from Kim K. said...

Loving up your beautiful babies is exactly where you need to be. Enjoy the blessings of Christmas and creating special memories. Continued prayers and blessings for your precious little girl.

jessica said...

What sweet words- really feeling for you and your family right now. So glad Baby P has a loving family to help her through all that is to come. Praying for healing and comfort during this time!