Today (well, I guess now its technically yesterday) started with 6:30 a.m. vomiting and sheet and mattress pad changing and pulling out of the NG tube. Paul had to leave early for work so I am there trying to change sheets and clean up vomit from the baby and eat breakfast and maybe drink coffee. Hana is fussy early and we waited to put the NG tube back in to give her some time without it stuck down her throat. I try breastfeeding which is rejected. I try giving her the bottle which is rejected. This bottle is the only one that has been sort of working and now the bottle is leaking everywhere because yesterday it fell from the drying rack and cracked and you can only buy it online.
I am frustrated and Hana is crying and then I cry to. We both cry together. Then I lay next to her on the half made bed and pull over a soft, puppy-heart blanket that was so kindly given to us and we fall asleep. I wake an hour later and my friend and neighbor, who is an amazing giver, comes over and I put in Hana’s NG tube and giver her medications and start a new feeding. We are an hour behind and I haven’t pumped yet and I don’t care too much because I just needed a little bit of a break. It’s takes a lot of extra effort to do things when your heart is heavy.
The day got better. The same friend and neighbor was over much of the day and many of the things got done and I was able to get some more done on the mountain of papers that had accumulated on my desk. Late in the afternoon I took Hana to the GI doctor. Mostly we talked. It was the doctor and a nurse and a nutritionist. We talked about the formula Hana is on and why. We talked about why she is getting 1 liter a day of fortified breast milk and why she gets fed when and how much. We talked about Zantac and fluid restrictions and G tubes and why they don’t really want her to get one because she would have to go under anesthesia to have it put in place. We talked a lot about vomiting and the rhyme or reason.
Then Hana got fussy and vomited all over me and the floor. At least they got to see first hand what was going on. He seemed to think the NG tube was the culprit. At the end of the appointment, I left only knowing that her Zantac is being increased and that a lot of people care and will work with the Stanford team to figure out what changes they can possibly make. I also decided that I need to start including a change of clothes for me in the diaper bag. Tomorrow will be better. We see the feeding specialist again.
We got everything done by 8pm and got to relax! Its the first time we were done before 10pm. It must be a sign that tomorrow will be better.