June's Journey: Time Flies When You're Having Fun...

...Or too busy to even sleep.

I don't miss being in the hospital, and it is definitely nice to have our family all in one spot; however, I do miss the instant access to all the resources as well as the help coordinating all the appointments, phone calls and bills. And of course, we miss our nurses and the social interaction. I do not leave the house most days except to go to doctors' offices. Bringing home a NICU baby during the winter months can be very isolating - we cannot take her to the grocery store, the mall, church, etc... Hopefully, we get warm weather early so we can at least get out for some walks.

June is doing well with feeding - almost as if she is making up for lost time. When she eats, we have to vent (open) her gastronomy tube with a mic-key connector draining into a bottle. While June eats for 15 to 20 minutes, about five to ten ounces of milk, saliva and mucus empty into the bottle. We have tried not venting during feeds, venting every other feeding, and venting half-way through feedings to help her keep more contents in her stomach, grow her stomach and increase her caloric intake. Unfortunately, if we do not vent her stomach every time the entire time she is eating, she ends up vomiting profusely an hour after eating.

Between the time June came home and the beginning of this week, she gained about nine ounces. While the weight gain is good, it was not quite where the doctor was hoping it would be. June's current weight keeps her in the sixth percentile. We did find out that she was getting the wrong formula delivered. We use the formula to mix with milk to feed June through her jejunal tube, which means she might not have been getting the right amount of calories. Because June is having her food delivered so low in her system and the nutrients are not going through her entire GI system, she needs a specific formula made a specific way so the break-down of the proteins she is getting and the amount of calories will help her continue to grow.

We have a slew of doctors' appointments coming up where we hope to get answers about June's medical future. I am also spending a lot of my day on the phone with insurance, home health, and agencies, coordinating June's care, medical supply deliveries and applying for a medicaid catastrophe card.

Sawyer loves helping out with his big sister: telling me when she is crying, getting her pacifier, reading to her, etc...