The last couple of days has been a blur. WE discharged from strong hospital on Tuesday after a whirlwind of a day, Mommy and Daddy had to do a 24 hour trial in the room, Arlyn had an ECHO checked on Tuesday to see if she still had a throbs in her Right atria (which she does). WE had to complete education, set up vendors, do a car seat check and bring all of the things we have been living at the Ronald Mcdonald house with for the last month to the car ( which daddy made about 6 trips). After that day we drove home and felt like "What Now?" It was overwhelming. When we were at the hospital we had a system, a structure to our day. WE came home and piled our patient belonging bags on the floor of the kitchen and tried to figure out how this was going to work.
This experience for me has been a learning process. With my previous children they cry when they are hungry. Miss Arlyn does not wake up to eat. I set an alarm every three hours to feed her. She had 10 times a day where she receives medication. I am still pumping every 4 hours, time to Eat? sleep? function? kids? lets just say it has been a lot. With that in mind Arlyn is doing well. She commands our attention and she needs it. The boys are happy we are home and our family can finally be under one roof. Yesterday 29th was Kolbys birthday and even though I couldn't do much for him on his birthday I was so happy that we could be home with him. He is such an incredible young man and I am so proud of my big 15 year old.
Tomorrow is Arlyns 1st primary care visit, today we meet the visiting nurse and we continue to move forward. Highlights of today Arlyn not only tolerated all of her feeds she took a record 45 ml this evening by bottle which is the most she has done so far. Keep up the hard work sprout!!! We have confidence you can do this. Looking forward cardiology indicated that a G tube is still in the mix we have a month to gain progress, I know she can do this..
Ride home
I just at 45ml all in a bottle :)
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