Last night Paul and I slept in Hana’s room. She fell asleep early and we didn’t want to move her to the Pack N’ Play in our room. Unfortunately, she vomited again around 5am this morning, about an hour or more after her last tube feeding. The bag that holds her milk and the tube that runs from the bag to her NG tube was full of air and I wonder if it was pumping air into her stomach. The pump is supposed to stop and beep at you that there is some error and the bag is empty, but this didn’t seem to happen. It’s just a guess on my part, what do I know? (Actually, I am surprised how much more I know than I think. Who knows the baby better than the parents?) But I think I am also hoping that her vomiting is being caused by something other than her heart getting worse. One unfortunate thing about the early a.m. vomiting episode was Hana pulled her NG tube out! We left it out for a few hours and I had to put it back in time for her morning meds. It didn’t go as “smoothly” as putting it in when we were still in the hospital.
Today Hana had to have blood drawn down the street at Kaiser. The first person who poked her to try to draw blood was unable to get anything. She called another lady over who seemed much more experienced. She was able to poke her again and get blood right away, but then the blood slowed and stopped. They almost had to poke her a third time, but then the blood started flowing. Hana was really crying, but she was a real trooper! The whole episode kind of wiped her out and she took a long nap. Tomorrow we go back to Stanford to see her P.A.C.T. team doctor. I am actually looking forward to it because I need more reassurance that she really is okay to be out of the hospital.
We are still trying to get ourselves situated and organized and in a new routine. I ordered some things from Amazon. I had to rent a hospital grade breast pump today. I just am not going to be able to manage with the one that I have and it takes twice as long to do half the job and I already spend at least three hours a day pumping (which is the only reason I have time to write this blog). There are lots of other little things that I am realizing will always need to be chased after – calling the medical supply company about order issues, calling our case manager about problems, etc. But I guess that is the same as paying bills every month – they are never “done”, they keep coming each month!
One goal I have for this week is to mount the cards that people have sent on a board. Many of them are hand drawn cards by other children. I want to hang it up in Hana’s room. I think it will be a warm reminder of all the people out there who care and are wishing her well.
Hana loves being outdoors. When she was fussy, we could go on a walk and she almost always would calm down. She loves to watch what is going on around her. Being able to go out and walk in our neighborhood has been one of the greatest joys of being home and out of the hospital. Not only are we able to say hello to friends and neighbors and spend time with our dog, Poppy, but Hana gets to be outside! (And I get to be outside).