No pain no gain

Today has been, and continues to be, a rough day for Lilly. She has cried and fussed most of the day. I think the longest she slept was about 45 minutes. Two problems: she is frequently gagging and then choking on mucus, and she needs to have a BM. (They gave her a glycerin suppository but still waiting for results. I plan on bringing some molasses to the hospital with me tomorrow morning.) So gas and mucus - not a fun combination for poor Lilly.

My husband and I have spent most of the day trying to help her. Suctioning, patting, etc.

It wasn't all bad though, I did hold her for the first time since her surgery for a little while. She calmed while lying against me. (Some pepole have asked why we haven't been holding her. We couldn't when she was in PICU because of all the lines and things on her. Then until today some of her wires and tubes didn't reach far enough past her bed for us to hold her well. Plus she just hasn't liked having her head or neck moved until today.)

Late this afternoon we did a little physical therapy with her. Then Daddy played one of their special games together and she cheered up. Then I played one of our games and then got out Hank her stuffed caterpillar. Hank was the lucky one - he actually got a number of smiles. Then Lilly took a short nap. Now she's crying again and Daddy's trying to help ....

Lilly's x-ray today was encouraging - there was improvement since yesterday! (Thank you God!) A respiratory therapist came in and did a round of chest percussions. (Patting Lilly's back solidly with a little oxygen mask.) We've been doing that too though I tend to prefer using my hand. I've also been putting a folded cloth on Lilly's chest and patting her chest. I was afraid to do this but she seems to like it.

A cardiologist stopped in and said he had two orders for Lilly. First - lots of play therapy and moving to clear up her lungs. Second - leave the hospital asap to avoid catching an illness. He said that Lilly's heart looks very good. :)

As difficult as it is to listen to Lilly crying and carrying on, it probably is a really good thing. She's exercising her lungs and getting lots up and out. So she's moving towards her goal - but it's just a rough journey to get there.

"Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." - James 1:12