Rachel came by this afternoon to visit and bring us some soup. Then we were paid a visit by some scary dudes. I thought they came to devour my baby. Turns out, “Raider Jerry” & “Black Jack Sparrow” (guessed his name) were nice guys that wanted to stop in and give us some good encouragement.
Jane has been wide awake today- sticking out her tongue, wiggling her fingers and toes and gazing up at her mama, papa, and all her visitors. If their is one thing that brings joy to our day it is that…the “real-ness” of our little baby girl. For a moment we can over look all the tubes coming out of her body and all the beeps surrounding us and just watch her move!
It seems today that Jane is recovering well from her last few days. Her heart rate and pressures have stabilized. Her liver has not shown signs of improvement so the team is really digging hard to find out what the issue is. Her kidneys are making a come back, but still need time to heal. Jane has started her feeds again, aka MBM, and hopefully this time she can stay on them for a while. She is borderline malnourished because the goal was to keep her fluid volume negative so she has to be monitored very closely as to how much volume she can receive throughout the day. (volume= all the fluid she receives like meds, nutrition, etc.) I know I have said this over and over, but Jane is just very delicate so we are always trying to find the perfect balance for her. The goal is to get her to a point that she is only on MBM and then add additional nutrition to her milk. We need this girly to grow so that her body can handle the demands of her “new” heart and recovering lungs.
AGAIN, we just want to say THANK YOU to EVERYONE who is helping us in ALL of the various ways yous are all reaching out. As I read your blog comments, your cards, open your gifts, eat your food, read your emails and texts, listen to your voicemails and hear your messages passed on by family and friends I am always humbled and brought to tears. I can’t handle all that Jane is going through, but I also can’t handle how much support we are receiving from all over the world. We are thankful beyond words…!! My sincere prayer is that God showers you all with blessings tenfold