Friday, November 7, 2014

Home!

After a VERY long day for our girl yesterday, and an overnight stay at Children's for observation, tiny P is back home, for now...

Yesterday, after some initial trouble getting started, they realized that tiny P's artery in her groin is completely closed off, so they used her vein in the other leg, and were able to perform a four hour catheterization on tiny P's tiny heart. They were able to go in through her neck, and through her groin, and get some good scans. There were some veins (called collaterals) that needed to be closed, so they placed some platinum coils (and a mesh basket in one that was very large) in those veins to close them up. Already we have seen her oxygen saturations go up, and we saw some pink lips today for the first time ever!


Tiny P did very well, and even tolerated her one hour liver/spleen scan well. I'm not sure I would have done as well, ha!


As you can see by the pictures, our girl was quite anxious, and needed the comfort of her bottle the whole time she was there. Poor baby.


Tiny P is quite the mover while she sleeps. When the baby has such a hard day, though, we are happy to just move the wires around accordingly.


We still have some unknowns about our girl's future and the plans for her surgery/s, but we did get some answers, and more will be coming soon, we know. We were able to talk with the surgeon for a bit afterwards, and he said she has one of the most complex hearts he has seen...
Of course our precious girl would be complex.

She has heterotaxy, so all of her organs are shifted to the side. The heterotaxy itself can present it's own set of problems, but paired with her heart defects, it presents many new challenges and things that we and her doctors will need to be aware of and deal with.


There is a lot of information to wrap our minds around! Tiny P's heart is failing, and she will need intervention sooner rather than later... all of her test results will be presented next week to the group of cardiologists and surgeons at Children's and they will discuss options, and present us with what they believe the best course of action is.



But for now... we are home, and until we go back we are enjoying our tiny P, little M, and baby J at home. And for now, we are looking forward to seeing what these higher oxygen sats do for our baby girl and her energy levels!


3 comments:

Paula said...

She is beyond precious! Happy she is home with the love of family, and a team of professionals working to provide you with some answers and Tiny P with the best possible care. The bottle, the sideways sleep pose, and pink lips! Love!!!

AJ and Suzy said...

We are continuing to pray for your Tiny P! God has a plan and we will see good things in store for that precious baby girl! We are holding you all up daily! Big squeezes to you all! Susannah

Musings from Kim K. said...

Continued prayers for P. Thinking of you all. Such a beautiful gift.