|With his nurse Marcia on discharge day--|
those chubby cheeks were from the steroids
About a month before, one of his neonatologists told us that he wouldn't be able to go home until he gained more weight, and he might have to get a gastostromy tube. I remember feeling frustrated, because another 24-weeker who had been born a month later had been discharged, even though he'd had a brain bleed and a shunt. (I have to wonder if that had something to do with insurance companies now...that baby sadly did not have as good of an "outcome" as Chris.) Fortunately, our new pediatrician was on the case...he was determined to help get Chris out of the hospital for Christmas.
|Snuggling with my baby, at home at last--|
For weeks, we'd been in training with the NICU nurses. Chris went home on multiple medications...including oral iron drops (blech!), theophylline (caffeine--a tablet that had to be split into quarters and crushed up), breast milk fortifier (which made him spit up--too rich), and many others I can't remember. He was hooked up to an oxygen tank, so we needed to learn how to manage that too. And he was also on a medical study called Stop-ROP, which was trying to determine if extra amounts of oxygen could arrest the advancement of a preemie eye disease, Retinopathy of Prematurity (ROP)...so not only did we need to keep his oxygen at a certain level for the study, but he was also hooked up to a laptop computer! Finally, he was also connected to an apnea monitor, which had sensitive leads that would beep wildly if he stopped breathing or his heart stopped beating.
|Our high-tech baby!|
Chris struggled big time to gain weight, and after he came home he was diagnosed with gastroesophageal reflux...those first few weeks were not easy, as he projectile vomited a few times a day, often exacerbated by my attempts to breastfeed. Those struggles to gain weight and grow continued for many years; in fact he did not even get on the growth charts until he was three or four, and then it was at the bottom. I am still amazed that he is as tall as he is at 17! Effectively eating and gaining weight were key requirements for going home, so it was touch and go.
|A few weeks after being home|
Before he could be discharged, we had to spend the night in the hospital, in a little room off the NICU ("rooming in"). That way the nurses and doctors could monitor all of us and make sure we felt prepared to take care of him on our own. It was not a restful night, to say the least! But we were so excited by the prospect of going home.
Finally, the day dawned...he had to pass the car seat challenge, too, in which he sat in a car seat for awhile to see how he would do. We felt a bit ambivalent leaving the NICU, because we had grown attached to the nurses and we were nervous about meeting Christopher's extensive care needs. But excitement overshadowed any worries he had.
|Daddy cuddling Chris|
December 21, we finally left the hospital and drove the few miles home. Mike's mother was visiting from England, but we asked her to stay with my parents that evening so we could have our first night with just the three of us in the house together. I'll never forget the feeling of walking into our front door with our baby in our arms. After 117 days in the NICU, it felt unreal to have him with us all the time. We had a life-size (5-foot-tall) oxygen tank in our living room, with a portable one for leaving the house. He was on oxygen and the Stop-ROP study for 1 month, and after that it felt liberating to take him anywhere in the house without oxygen tubing!
When preemies leave the hospital, they are often agitated and have difficulty settling into their new routines. Sometimes they miss the noise and bustle of the NICU, where it is rarely quiet or totally dark. Many preemies are highly fussy and difficult as babies, but Chris was an easy baby...in fact, he was our easiest baby! He slept in a bassinet in our room and we had to wake him up to feed him in the middle of the night (he needed the calories). He loved to snuggle as much as possible, but he was also able to sleep on his own. We held him as much as we could after all those weeks of rationed holding!
Christmas 1996 was a quiet, understated affair...we didn't attend the usual extended family gathering or go to church and instead stayed home and had a quiet celebration.
|Santa visiting the pediatric unit, December 1997|
Because we were terrified of him getting sick, we rarely ventured out of our house except to take walks or go to various doctors' visits. An older preemie we knew (34 weeks) contracted the deadly-to-preemies disease RSV after he went home, returned to the hospital and was on life support, and tragically died--all in the time we were in the NICU. It was heartbreaking. We required everyone who visited to wash their hands thoroughly as soon as they walked in the door. Our pediatrician's office staff ushered us in the back entrance so we wouldn't have to sit in the waiting room and expose him to germs. Our efforts paid off, because he did not get sick during the first year of his life. He unfortunately contracted RSV right before Christmas 1997...and was in the hospital for a week in isolation, with a horrible case of pneumonia. The NICU nurses told us how lucky we were that he didn't have to be readmitted to the hospital for a year, but that was small comfort for us! So 1997 was another grateful Christmas spent at home after a hospital stay.
I often get emotional at Christmas time...singing Silent Night at the candlelight service always gets me, and I think it's because of this bittersweet resonance Christmas contains. I think of the Christmases when I've been away from my family...those years when I was in China and Japan over the holidays, and a few times we've been in England for Christmas. And I will never forget those Christmases of 1996 and 1997, when I was overcome with blessings of the miracle of my child, alive and well. I am so grateful for my family and for my healthy preemie, now a young man!
|Christmas 1997, at home from the hospital the second December in a row|