Other than the 10 days where Hope was completely sedated, I have averaged 10+ hour days. The hospital is kind of a time warp. Most days are the same but they're amazingly busy, especially since we've left the CICU. I have stayed overnight 5 out of 7 of the past nights in effort to get little miss to eat, but before I was doing that, I was getting in around 10, and staying until 7. Now that the dog is home it is slightly more complicated and I need to go home in the middle of the day.
The last few days we have settled into a routine. A typical day starts with checking in with the nurse. Before I was staying, the nurse would give me the update on Hope's night, now that I've been staying, I've been telling the day nurse how things went. After checking in, Hope eats breakfast around 7AM. This takes about 30-45 minutes, then
I order breakfast and pump. After that, there is often something on the schedule, though her primary job right now is to eat. Labs usually happen in the morning. Hope has tiny veins, so this usually takes a while, but she never screams. Even when she is poked in her head. Nothing more than a wimper. If she needs X-rays or other diagnostics, these often happen in the morning. Sometime late morning, the Nurse Practitioner stops by to give the report from rounds. Then Hope eats second breakfast. I pump when she's done, then I go to lunch after that and wait around for the 2:00 feed, then i run home after pumping to walk the dog and get the car. Chris comes while I'm gone, so that he takes care of the 5:00 feed. I come back in and Chris goes home. We continue on the three hour schedule overnight, so I am basically sleeping in two hour increments. Basically, the day is feed Hope, pump, eat, then do it all again. I'll be happy when we're home and I don't have to pump every three hours, since I can replace some pump sessions with nursing.
The days are long, but go by quick. It has become a blur. We've met so many people and I have started to forget who cares for us when. Since every day is the same, I only really remember really good data and really bad days. I haven't had a lot of time to write, so I can't even remember it that way.
All stretched out
Last week was a struggle. My last post, I talked about the light at the end of the tunnel. Well, that is one LONG tunnel. Our number one challenge has been getting this kid to eat. We have met several road blocks, the biggest being reflux and getting her to take in a certain volume. We had been feeding her breastmilk fortified with formula, but we had a hunch that it wasn't agreeing with her. We convinced the team to let us try straight breastmilk and see how she did. Lo and behold, her volumes increased and we were eventually able to remove the feeding tube yesterday. This was a huge deal as it was a long, frustrating process. She is no longer hooked up to any sort of machine other than the monitors they use when we're not in the room or during the night.
No more feeding tube! We now have the wireless version.
Another struggle was our room situation. When we moved out of CICU, we went from a beautiful spacious single with one nurse assigned just to us, to a small double room on the hallway side and a nurse who was also caring for two other patients. There was little room to move around, especially with two chairs and a crib. The bathroom was on the other side of the room, our roommates side. We were in that room for a week. I was never happy with our room, but kept telling myself we wouldn't be there long. I don't like to complain or be a pain, so I never said anything. We watched 5 different families come and go. Our last roommate was the hardest of all. The baby was not a good match age-wise for Hope. He was probably a year and a half and was not feeling well. He screamed from the time they brought him in. When they came in, they managed to pull one of our curtains over to their side. This meant we didn't have enough curtains to close us off. I had to pump / nurse, but was exposed. There was nowhere for me to go and I lost it and melted down. Later that night, we moved over to the new wing, and were given a nice, private room. This room is actually larger than our double. It is a single, has a gorgeous TV, and a private bath. There is enough room to have visitors and it is more like a hotel room than a hospital room. I have felt much better since we moved here.
The last piece of the puzzle now is for miss Hope to gain weight. Then she can come home, which will be soon! Will keep you all posted!
Hang in there Hope. The finish line is in sight. Dig deep and you'll be home before you know it.
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