The night was pretty good for Hana. She started fussing around 6:30, or earlier, this morning and I thought it was interesting that she goes to bed before the sun goes down and she wakes up before the sun comes up. This morning her diaper was so saturated that it had leaked all over the sheet. So, I changed the sheet. Unfortunately she started to vomit while Paul was in the shower. Her NG tube started to come out of her nose with each retch. I kept trying to push it back in and it would make her retch again. Finally, she had one big retch and the tube just flew right out. I’m sure that’s what happened yesterday too. One split second it was in place and then, in the blink of an eye, it was out.
We decided to wait again to put the NG tube back in. I wanted to try a bottle again, but I couldn’t wait too long because Hana needed her morning meds, eventually. Our friend and neighbor came over again around 9am and we got the tube back in. It is definitely a two person job. I tried giving her a bottle before putting the tube back in, but Hana wasn’t having it. I can’t remember quite how the day progressed after that. She went down for another nap and then vomited again around 10:30. Of course, I had already changed the sheets, so off the new sheets came. There was an hour where it was crazy – baby vomiting, vomit everywhere, carrots steaming on the stove, me running around trying to get us ready for an appointment. But friends showed up and everything turned out pretty much ok. Lots of stuff had to wait for hours to get done.
We went to see the feeding specialist again. This time I brought the Bumbo seat and tray, our new Adiri bottle and a carrot puree. The carrot eating went well, according to the feeding specialist. Hana is delayed in her solid food eating, but she seems to be progressing nicely. I was glad she said it was positive, because I kind of thought it wasn’t very successful, so it was good to get a different perspective. The bottle feeding was labor intensive. It involved blowing bubbles and popping them, singing songs, playing with puppets and other toys. I will continue trying with the bottle because I want the NG tube gone, but it requires a lot of patience and time. The feeding specialist pointed out some things I hadn’t noticed, or didn’t understand what they may mean – like Hana arching her back is probably her reflux bothering her. She also mentioned going to a physical therapist to help with some of her body positions while drinking and eating so that she can get in a more comfortable position. Her development doesn’t seem to be too delayed because of the hospital, but certainly some more strength in certain areas could help with eating.
I was exhausted after all that but we still had to get bloodwork done. That was awful this time. They had to poke her twice and she screamed and screamed. My poor baby. She went immediately to sleep when we got home. That’s what I should be doing right now, sleeping. Tomorrow we go back to Stanford for a check up. I hope it goes well. I hope they can help me rest easier and with more peace. But maybe the part about peace is up to me.
We had lots of great help today and a delicious dinner was delivered too. It is really beautiful how people are willing to help. These people inspire me!