Baby M’s NICU experience has been, overall, not terrible. She has not suffered from a lot of the problems that micro-preemies face. She has had no brain bleeds and no surgeries. Two rounds of medication closed the patent ductus arteriosus (a hole in the heart that closes spontaneously in newborns but not in preemies). Her digestive system works great and she has never had any problem “eating” – first with total parenteral nutrition and then with breastmilk via a naso-gastric tube or a few drops by mouth via a q-tip. Her eyes are immature but so far show no indication of retinopathy of prematurity, a blood vessel disease that can result in blindness. (Editor's note: I wrote this post a few days before it published, and in that time, Baby M has been diagnosed with moderate retinopathy. Her eyes are being watched very closely and she may need laser eye surgery before leaving the hospital to fix the abnormal growth of blood vessels.)
She weighed 1 pound, 5.5 oz when she was born, and was 12 inches long (from head to feet, she was the same length as my arm from elbow to wrist). Ten fingers, ten toes, a cute button nose and when they finally opened three weeks later, two beautiful eyes. Her palm was the size of my thumbnail, her fingers were like toothpicks. Her back fit in the palm of my hand. When she was stable enough to begin kangaroo care, she fit inside my shelf-bra tank top between my breasts.
Kangaroo care is amazing. The infant, wearing only a diaper, is placed against the mother’s bare chest, and they are both wrapped in a blanket. It promotes bonding, and helps the baby learn her mother’s scent. Her positioning allows her to hear her mother’s heartbeat which she should still be hearing in utero, and snuggling provides boundaries to make her feel safe (preemies tend to flail their arms and legs and get scared). But more than that, it helps the baby’s medical condition. Oxygen support needs go down and blood oxygen saturation levels go up. The infant can better regulate her own temperature. Breathing rate normalizes. Our hospital recommends kangaroo care for as long as the baby will tolerate it, even when they are on a ventilator. Once Baby M was stable enough to kangaroo, we did so every day for an hour or more, with very few exceptions.
For a while, she was the “poster child of the NICU” and doctors would bring foundation tours by her room and tell her story. She has had very few emergencies, and we have never received a terrifying phone call asking us to come to the hospital right away. But this is not to say that her path has remained remarkable.
Due to the immaturity of her lungs, Baby M has severe bronchopulmonary dysplaysia, aka chronic lung disease, and needs more support than is typical at this point (37 weeks five days gestation; 12.5 weeks of age). She went back on the ventilator briefly her first month in NICU, but has since been on SiPap or a nasal cannula with high flow. Her oxygen needs are high – above 40% and sometimes as high as 80%. This is dangerous for two reasons; one, oxygen itself is toxic to the lungs and damages the tissue, and two, oxygen damages the blood vessels of the eyes, which in her case are still developing. She’s had six rounds of steroids to try to wean her oxygen needs, and they’ve all helped somewhat but nothing has done the trick. She works so hard to breathe that it can be hard for her to do anything else, like suck from a bottle. So far, her work of breathing has not prevented her from growing, which is very important. New lung tissue is developed as she grows, and someday – someday! – healthy tissue will be more plentiful than the damaged tissue, and she will be able to breathe on her own.
That day is a ways off. She will be coming home from the hospital on oxygen, and could be on it for eight or nine months. A cold or flu would be catastrophic for her – we’re talking hospitalization, ventilation, major, major problems. She cannot go to daycare for at least two years. She may have asthma, and will probably be an “indoor child” – running and sports are not likely to be fun for her, maybe ever.
Even so, I will take breathing problems over some of the others she could have faced. Babies eventually outgrow breathing issues – have you ever seen a kindergartner on an oxygen cannula? Feeding problems (oral aversion) and digestive issues or brain bleeds are much more serious situations. We are not out of the woods yet, and it will probably be two or three years or longer before we fully understand the implications of her prematurity. But we are on a good path, and if nothing else, this experience is teaching me patience and gratitude.
To be continued…