Ten years ago when Phil and I were married, little did we know how quickly our lives would change. I became pregnant within a month of returning from honeymoon and Tristan was born just 8.5 months after our wedding. He was 11 weeks and 2 days early, and had he been born 25 years ago, Tristan likely would not have not survived. Then ‘real’ life began with going home with a premature baby, still five weeks before his due date, full of questions and not knowing what to do.
Thankfully times have changed and continue to change. Just this year, clinical trial results have been released using an artificial surfactant to help very premature babies’ lungs mature if they are in respiratory distress. In fact, Dr. David Sweet is now the head researcher in this area, and was a part of the Life At Home Project with Tiny Life that we were involved in. A lot of those first few days after Tristan was born is a blur, and the first day I cannot remember much about, but I do believe that Tristan received a dose of surfactant as well. Following which he was only on the CPAP machine about a total of four hours, which is amazing. Our heartfelt thanks goes out to doctors Sweet and Halliday (who created the original pig-based surfactant).
So much has been done medically in the field of prematurity, but when it comes time to bring your tiny infant home after weeks, and quite possibly even months, in the hospital – that is very scary prospect. Exiting, yes. Anticipated, yes. But also very frightening.
Yes I’d stayed in a private room with Tristan for 48 hours prior to his being ‘sprung’ from the hospital. But I was told he wouldn’t be going home because he was too young; it was just to establish breastfeeding now that he could suck, swallow, and breathe all at once. Even the last morning I was told this. Imagine my surprise when that afternoon at 2pm I was told that he could go home that day! We weren’t ready at all, and he had to leave within two hours or the crisp March air would be too cold for him and he would have to stay.
So I called Phil at work and he made arrangements to leave immediately, drive the 22 miles home to get the car seat, then the 35 miles to the hospital to pick us both up.
Those first few nights after Tristan was out of the hospital I hardly sleep at night it because it sounded like Tristan was choking; which is not a sound he made at the hospital. He was okay, but it was weird.
Tristan went from the hospital room of 24°C and 14 layers of clothing and blankets to a home environment that was expected to have a temperature of 16 to 20°C, according to the literature we received. But how are you supposed to adjust a 5.5 pound baby from one environment to another?
Tristan was still having periods of apnea when he left the hospital, which made us nervous. We were used to the hospital machines beeping and alarming when he needed to be reminded to breathe on his own with a tickle and tap on the foot; but at home we did not have such equipment; just trust in the laws of nature that Tristan would remember to breathe on his own.
I didn’t know anyone yet in our small town, and I didn’t know any other parents of premature babies. Looking after a preemie at home can be isolating and lonely. Thankfully, the first day I made it out to a moms and tots group was the last day that another mom was there and she had a daughter who had also been born too early. She doesn’t know just how much our first talks meant to me; and I know it helped Phil a great deal when he talked with her husband, as well.
Our health visitor was majorly anti-breastfeeding right from the first five minutes that we met. She had me in anxiety attacks every 1 to 2 weeks for over a year when we had to have Tristan weighed; she didn’t like charting according to the adjusted age and wanted to compare Tristan to others with his birth date, not his due date, nor those babies who were breastfed rather than formula fed.
I had so many questions and no one to ask; I felt lonely and the only preemie resources available were through Tiny Life, but that meant we had to wait until Phil had a day off work and we had to drive the hour to get there. Resources for parents of preemies once they came home from the hospital were pretty much non-existent.
I didn’t even know when growth spurts were going to happen in a premature baby; all of the information that was sent home with us was aimed at full-term babies.
Even though Tristan was pretty straightforward (for the first six months-but that’s another story) as he didn’t need any wires or feeding tubes when he came home. He was still a high-needs baby in that he did need attention almost round-the-clock as he wouldn’t sleep unless he was held; he had bad colic, and he was still supposed to be curled up in my belly. So one couldn’t really blame him…though I was only getting about four hours of sleep over 24 hours (and not all at once).
But I really could have used some help to know what was ‘normal’ and what to expect when going home with a premature baby. It’s completely different from a full-term baby (and it was all new learning skills when Kallista came home because then I didn’t know what was normal for a late pre-term baby because that was new to me and very different from looking after an early preemie).
Our health visitor wasn’t knowledgeable, we had been discharged from the hospital and although they said we could call for a couple of days, that wasn’t going to be a solution; what were we to do?
At that time Tiny Life was undergoing a transition and didn’t have anyone available in our area, but since then they’ve moved premises, they have support groups baby massage classes, volunteers who go right out to the hospital to visit with you while your baby is still there, as well as volunteers who will come to your home to help you, or just chat. They’re going from strength to strength.
The newest web-based resource from Tiny Life and Queen’s University, Belfast, is Life At Home With Your Premature Baby. It aims to help families of premature babies make the transition from hospital to home smoother and answers many questions that us parents have about this time. You can read about our experience with this project here.
If you, or someone you know is making the transition from neonatal unit to home, point them in the direction of Life at Home and Tiny Life to give them some reassurance that they can do it; they aren’t alone, and that they’re about to embark on the most amazing experience of their lives!
