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Wednesday, April 19, 2017

It has been five years

Five years ago today, I handed my daughter over to her medical team.






They put her to sleep, stopped her heart, and sewed in a little gortex patch so her heart could work the right way.  She came back to us a maze of tubes and lines and machines and medicine.  She was sedated and on a ventilator and it was such a long long night waiting for her to wake up.

Two days after surgery she still required oxygen but they were able to switch to blow by (the blue tube) so it just blew oxygen in her face to help her breath.  She was still a maze of tubes and wires and had to be sedated often to keep her calm


By April 22nd, she was spending more time awake and even gave me a teensy tiny smile

I spent a lot of time reading to her, particularly Winnie the Pooh, because it helped her stay calm and drift off to sleep.


Finally, on April 23rd, we said goodbye to the maze!  She just has an IV in her foot and her pulse ox but was free from chest tubes and central lines and all the other things that made her so uncomfortable





On April 24th, she was determined to stay awake and not miss anything, no matter how sleepy she got





By April 25th, she was feeling pretty good--she was finally able to get dressed and spent some time playing!



The 25th was also an extra special day because we were finally discharged from ICU and went home!  She was so very happy to be back in her own bed


She was a little grumpy, though, because she still had to take a bunch of meds and had to add back thumping to her routine because of the surgery





We had our first outing ten days after surgery on the 29th and she had a wonderful time getting out and about



Before her surgery, she had pretty much stopped growing.  Just breathing took so much energy there wasn't much left over for eating.  After surgery, though?  It was like having a newborn!  She nursed alllllllll the time and being asked if she was ready to eat got the best reaction


By May 4th, her steri strips were almost gone and her incisions were looking really good (she has the zipper, two chest tube scars (she calls them her buttons), and faint scarring on her neck from the central line)


Five weeks and one day after surgery, her scars were looking really good!





Today, five years later, she still shows off her scars to people :)  She is at cardiologist visits every two years and has no restrictions.  Oh, how far we have come!