Working Out A Plan…

We are still processing all of the information we have learned about our tiny P, her precious heart, and her complex anatomy, but we are relieved that we now have a plan in place…

Last Monday tiny P’s cardiology team met to discuss and decide what to do with our girl…

Tiny P’s heart surgery is scheduled for January 14th, just seven weeks away.

The pressure in tiny P’s Glenn (in her heart) is high, because of a leaky valve. This valve cannot be replaced, so it needs to be repaired. When they go in for her surgery, they are planning to first repair tiny P’s leaky valve, and as long as that goes smoothly, they will also perform the Fontan surgery.

We were also told the results of tiny P’s liver/spleen scan and her catheterization findings…

Instead of dextrocardia, tiny P has heterotaxy, which simply means that instead of her heart being on the wrong side of her body, all her organs are moved to the side. Along with her heterotaxy, tiny P also has asplenia… she has no spleen. Because she has no spleen, tiny P’s immune system is severely compromised, so we have added an antibiotic (and a probiotic) to her daily medicine regimen, and she will take the antibiotic for the rest of her life. Everyone we spoke to while we were in the hospital was amazed that tiny P lived for so long with this compromised immunity…

We are relieved to know more about our tiny P, and her precious little heart and body, and we are glad to finally have a plan in place for her… we still are having a few more tests done in the next couple weeks, and will most likely be adding a couple more specialists to tiny P’s roster.

Now we just have to keep our girl healthy until surgery!


  1. Musings from Kim K. on November 25, 2014 at 7:18 pm

    Such a precious gift. Continued prayers for your family.

  2. H on November 26, 2014 at 1:51 am

    She is in our daily prayers. Asking for continued wisdom, guidance, and health. Giving thanks that she is with her family and getting the help she needs!

  3. jessica on November 26, 2014 at 2:09 am

    What a sweet baby! So glad that you have a plan in place. Praying for her and your family!

  4. Always wear your tiara on November 26, 2014 at 10:58 am

    an incredible little fighter who just knew she had to wait for her family to bring her home and make her as healthy as can be. Hugs to all as you enter this new chapter.

  5. Paula on November 26, 2014 at 11:59 am

    She is incredible in every sense of the word! What a love!!!

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