Hot July

The last few weeks have flown by! We have been home for a month now, and while we are all still figuring out our routines, Henry is doing great!

We have obviously had a lot of follow up doctors visits. We currently have a home health care nurse coming out twice a week, unless we have a doctor's appointment that week. This has helped us transition from Henry being constantly hooked up to monitors and still finding out here and there that things are stable.

After two weeks, we went back to Children's Mercy for our first clinic visit with his cardiologist. Henry had an EKG and an echo. The EKG showed something a little off, but Henry was moving around a lot during it and his doctor wasn't concerned. The echo looked basically the same, but possibly even slightly better. His doctor was also pleased with his weight gain! Henry has a lot to catch up to, but he is now on the growth curve. Four weeks after leaving the hospital, Henry had gained just over two pounds (just over one kilogram) to come in over 15 pounds! 

After the Fourth of July, Henry had his six month pediatrician visit. He got his vaccines, so we are basically caught up for him on that - not an easy task since he was hospitalized for the first five and a half months. Henry is hitting all the four month markers, but only half the six month. We have been referrred to TARC Infant and Child Services, and their Tiny-K program for development. Unless necessary, we won't be back until his nine month appointment!

Last Monday brought our first panicked moments. Henry cried every 45-60 minutes over night. His g-tube was irritating him and causing him to scream every time we cleaned it. We had home health care come out to look him over, as we will always be concerned it could be his heart. The nurse removed some water from the ballon in the g-tube, and she agreed that she thought it was the g-tube irritating Henry. She said the doctors may want to change it to a bigger one when we went back to Children's Mercy in a few days. At our Thursday appointment, the surgeon did agree he needed a bigger size, and Henry has seemed happier. Although we are still working on tummy time, he seems less irritated by the g-tube now. We even submerged it some in his bathtub the other night.

On Thursday, we also met with Special Care Clinic for the first time. This is essentially a second pediatrician, specifically for kids with the sorts of issues Henry has, who will help us plan his feeds, and focus on development. The doctor was impressed by his babbling sounds as a good indicator he is developing good cognitive skills, and thought his weight and height were very proportional. We dropped his antibiotic, the flagyl (one medication officially gone!). We have also developed a plan to move Henry off continuous feeds during the day. We are to take it as slow as necessary, as no one has any desire to be back in the PICU until his next open heart surgery. We have also been given permission to introduce solids, in particular rice cereal with the Elecare formula, to him. We are waiting until after our appointment with OT for guidance on that here in a couple of weeks.

Although we feel more tired than we did before, it's more of an exhaustive tired than a worried tired. We are very thankful and blessed that Henry is home with us. We look back and see how far we have come. From having to get assistance to hold our son, to watching him recover from open heart surgery, thrown onto a ventilator for six weeks not knowing if we would make it to the next surgery or would need to go onto the transplant list, to watching another recovery of an open heart surgery, and several times battle bloody stools, it really is wonderful we are home. 

Being home has also allowed Henry to meet more members of his family who weren't able to visit him in the hospital. He has met his cousin, Gunner, a couple of times now, and Nana will actually be watching both boys for a few days this week. Good luck, Nana!

And this past Saturday, four generations of the Hatfield family were able to come together, as Henry got to meet his great-grandma Hatfield!

Henry is one tough little man. Thank you everyone for your continued support, thoughts and prayers.