I struggle to know exactly how to describe the emotions of today. Removing Mallory's breathing tube was amazing. For the first time in three weeks I looked at her and felt like my baby girl was back with us. However today was the first day that I could see a path to bringing her home which caused a lot of anxiety and fear of going through the pain all over again.
We were told today by the transplant team that as long as our night goes well and we are still without the ventilator in the morning, she will be move from a status 1A on the transplant list to a 7. This is sort of a paused status as you don't want to fully remove a listed patient until you are certain.We were also told that if we can stay off the ventilator and increase her feedings, our next step would be to move to the floor and out of ICU. There we could have multiple visitors, I could stay in her room and hopefully we would be looking at a path to taking her home.
Again, things that after being in the ICU for 3 weeks is completely frightening yet the most miraculous thing knowing what we were up against 3 weeks ago.
So, once again, here we are, at His mercy and His plan. But, now more than ever, I see how unbelievably lucky we are to have our faith, our families, our friends, the staff at Egleston, and our little miracle Mallory Kate.
Keep the prayers coming :)
Love to everyone.
Omg i just saw this. Im not sure what youve been going through the past few weeks but i hope everything works out for the best for that beautiful baby girl.
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