She eats with what???

On Kate's third day of life, I was released from the hospital, still smarting from the c section, but anxious to see her and hold her and find out what the hell was wrong. I couldn't fathom it really. None of us could. This is what I saw, when I went into the NICU that morning. Nothing extremely out of the ordinary, just a newborn babe with chubby cheeks, yet hooked up to machines and with a tube through her nose and an IV in her arm. I was shocked to see her like this, even though I knew she was sent to a NICU, I didn't expect to see this. Nevertheless, I asked them to show me how to feed her, because in our minds, that is what was holding her back from coming home.

The Haberman was the oddest looking bottle I'd ever seen and a far cry from the Dr. Brown's that awaited Kate at home. I couldn't have known they were only the beginning of odd for us. Nothing was as it should have been, and it wouldn't be for a very, very long time to come. But everyday I went to the hospital, and persisted in feeding her. Her breathing was ok, and she was on oxygen through nasal cannulas only while eating. I kept vicious track of how much she ate, and stalked the nurses taking care of her to feed her as much as possible. I kept thinking, "as long as she eats, she can come home" and I resigned myself to feeding her almost around the clock if need be. She did ok eating, picking up at some points and refusing at others. I remember one night as B. and I were coming for our nightly visit, a nurse we knew and trusted told us Kate ate 48mls from her bottle. We were ecstatic! Her goal was 60mls so we weren't far off.

Eventually, her breathing issues took precedence. A nasal trumpet, possibly the ugliest instrument in all of medicine, was inserted into my baby's nose. It relieved her breathing and I was satisfied for awhile that this would help. After all, if she could breathe, she could eat...right? About week 2 of twice daily visits to the hospital, as well as caring for my 3 sons, my nerves were fried. I was crying to everyone and anyone who would listen. It wasn't getting better, it was getting worse. A nurse told me they'd had a kid "like this" once, who stayed in the hospital for 9 months. Devastated doesn't come close to how I felt...hopeless was more accurate. All I wanted was a baby, and here I was losing out on all the joy of a new baby. I was home and going about my life as if she wasn't here. Doctors started talking about other options for her: a tongue/lip adhesion, an orthotic device to help her get a good suck. Some nights her breathing was fine without the trumpet. Once she went all night without it, and the nurse caring for her was calling the doc to get an order to discontinue use when Kate started to desat. Typical of Kate, I was yet to realize, was for her to look fine, but breathe horribly. She just couldn't be positioned. She needed more help.

On Kate's day of life 24, we had a meeting with the attending. She advised us to seek specialized care for Kate. The hospital simply couldn't do anything more to help her. She told us, "go into the city, or go to CHOP". When she told us she had contacts with CHOP, we opted for that choice and she called them right then and there and asked them to come and get her and evaluate her for a tongue/lip adhesion. It took less than 24 hours for the CHOP transport team to come. By a stroke of good luck, B and I were just arriving at the hospital when the team arrived, early, to pick her up. There she was, in the tiny space of a transport isolette for the second time in her short life. Still, we both felt hopeful. I mean, CHOP was one of the best and we knew whatever hardship this might cause us, it would be better long term for Kate.

It took awhile for me to see it, but ultimately, we were right.