Long Days

The days are long. My sister and I look at each other and wonder how it got so late. It was the same when my mom was here and Rose too. After a first continuous feed night which resulted in a very fussy Hana, I still felt exhausted from lack of sleep. Last night, she was quiet and I finally got more rest. I am getting up in the middle of the night to add fresh milk to her feeding bag and then to pump, but I think I got close to four hours of sleep in a row.

The long days are made easier by the wonderful help we’ve received. Everything from washing bottles to walking Poppy to providing meals, it has been amazing and so appreciated. Sometimes I am very scattered feeling and I am concerned I am not doing a good job at showing my appreciation to those who come to help. Please know – those of you out there, that I really, really appreciate it! I do think that a rhythm may be emerging, and certainly some routines are established. It is still hard! Today we got done everything at 10pm and that was the earliest we’ve managed to be cleaned up and ready for the coming night and day.

Hana has been good, I think. She is still making the worrisome grunting noise. She is still vomiting although she is back down to about once a day. She vomited a huge amount yesterday while I was waiting in line at the pharmacy at Kaiser. I was holding her and I caught, in a reflection of glass, the vomit shooting out of her mouth and on the floor. Luckily, it missed my backside, but the aftershock vomit got me all over the front of my shirt. Some very kind people waiting in line cleaned up most of the vomit. I didn’t have time to be embarrassed, I was too worried about Hana and her choking or continuing to vomit. It was still another twenty minutes before we got our medications.

Hana’s pediatric cardiologist called today to check on Hana. I was concerned because she seemed kind of warm and one of the three thermometers I have indicated she had a fever of 100.2. But then I had the fun of doing a rectal thermometer reading which was showing Hana as the typical 98.6. I don’t know what to say when people ask how Hana is doing. She is doing ok, well, good if you consider the fact that her heart is enlarged. She looks and acts well, except vomiting fairly often and getting all her food through a tube. Her heart still seems to be very, very sick. But I want to sound more positive and hopeful and not so realistic. I want to say she is doing incredibly well, she is surpassing all expectations. That is what I want to be true.  I sometimes feel that being realistic is like a ball and chain, it is dismal and pessimistic and a surrender and it keeps you down. It is not where I want to be, maybe because its hard, but maybe because I am afraid of hope. Can I allow myself to have hope? Is it safe? Do I deserve it? My heart and my mind are at odds. But I want to feel hopeful. Maybe it is not safe and whatever twistedness in my brain brought up whether I deserve it or not, I am going to tell myself that I do. I love that baby.