We brought Henry home this afternoon! It couldn't feel better to be under our own roof in our own home. Henry had a stable weekend in the hospital and checked out good today, so they let us come home. This does not mean that Henry is better, just that he is stable. In fact, his heart condition has not improved, so please keep praying for his healing. He will be on medication indefinitely at this point, and will start another new one in a week or so. Our weeks will be filled with doctors appointments and lab visits, but also with the life of our two boys home together, which we couldn't be more thankful for. Henry looks great (will post pictures later)...his cheeks are full, his color is good, and he still is as smiley as ever. We did have to come home with the feeding tube...we will stay on the same continuous overnight feeds until he turns into a "butter ball"! It is still so important that Henry gains weight, and that he has plenty of calories to help his heart function and hopefully repair. He weighs 12 lbs now! That's about 2 1/2lb. gain over these last 5 weeks!
Over the weekend, John and I were prepped for life at home...we learned how to put Henry's NG tube in (this is not fun and we are hoping to not have to do it very often!), how to administer his medications, how to mix his food and work the pump, and got a refresher course on CPR. We know all of the signs to look out for and feel pretty comfortable taking care of Henry at home.
We have been encouraged to resume life as normal as we can...our biggest cautions are NO sick people and NO crowds. We are praying that we can easily find our new normal...that Henry would adjust to being at home, and that Grady would adjust to being back home with us. It has been 5 weeks since I have spent a full day with Grady, and I am both excited and nervous to be back at it. I know it will be great, but I would really appreciate your prayers for this transition.
I feel so much lighter just getting to be home...I know that this journey is not over, but I find so much comfort getting to be home with our WHOLE family. The nurses and staff at CHO were sad (and very glad!) to see us go. Many told us how much they loved getting to take care of Henry, how his smile brightened their day, how they will miss him (and us too). He was a little light up there in the PICU, and we are so thankful and proud to get to be his parents. We made some good friends that we will always be indebted to for their wonderful care to our son.
We will let you know how these first couple of days are at the end of the week...plus some pictures!
I cannot "sign off" without saying thank you again...I know that we have people all over the country praying for Henry and we can feel your prayers! Please keep praying for his healing! Thank you also for everything you all have done to help make this season as easy and as pleasant as possible. Thank you thank you thank you.
Meg and John
