Last Wednesday we attended a reunion of the preemie babies who were in hospital at the same time as our little girl. The last time these children were in the same room, they were all in incubators attached to sats machines. Now they are strapping 2 year olds, strutting their stuff and fighting over the Tiny Tots cars.
Ellis is the oldest, born at 25 weeks around April 2019, then Sienna, born at 24 weeks in May 2019 and finally my little one, Anela, born at 24 weeks in June 2019. Ellis amazingly was never ventilated during his stay in NICU, which is pretty rare for a baby of his gestation. He battled many infections, as most preemies do, including bacterial meningitis, which was hugely stressful for his parents, but after just over 3 months he came home. You would never know he was born prematurely to look at him now – a happy, healthy toddler running around.
Sienna fought off life-threatening infections too during her NICU stay, and had to be transferred to the Southampton unit for PDA ligation heart surgery. She made it home after 3 1/2 months and stayed on home oxygen for a few months more. Again, you would never be able to guess she was born prematurely from how she looks now.
Finally, Anela had a longer hospital stay of 5 months, possibly because she was transferred from one hospital to another when she wasn’t stable enough, causing a significant set-back in her journey. She was ventilated for roughly half the time she was in hospital, resulting in scarring to her lungs, called chronic lung disease. She too suffered sepsis at least 10 times, and caught a potentially fatal fungal infection that lasted weeks. She came home on oxygen like Sienna, though she’s been off it for just over a year now.
Most people at the reunion would probably have said they would never have known Anela was a micro preemie, just like we observed about Ellis and Sienna. She was dashing about with a paper plate of strawberries that somehow defied gravity as she carried the plate on such a slant it was almost vertical, getting under everyone’s feet and trying to tip all the bubble mixes on the floor. Likely only my husband and I noticed the big welts on her calf and forearm, left over from the cannulas that extravasated into her skin when she was in NICU, causing deep black burn marks. I expect we were the only ones who could tell her left leg is bigger than her right because the femoral vein is completely defunct in the left due to a blood clot in NICU, leaving the blood to flow through the tiny capillaries and causing permanent swelling. She fortunately waited until everyone had gone to throw up her lunch because of her ongoing reflux symptoms, so again, no one knew how careful we have to be with what she eats and drinks and how many times a week we have to mop up piles of vomit.
None of these ongoing issues is life-threatening or even remotely dangerous. They are all simply a nuisance; annoying by-products of prematurity. So in many ways Anela is hugely lucky and has, so far, fared better than many poor preemies who have ongoing issues resulting from their prematurity. But attending the reunion and seeing the other little ex preemies brought it home how different NICU journeys can be, and how different a path preemies can take after coming home too. Some have absolutely no long-lasting issues from their early birth, while others battle cerebral palsy, lung disease, hydrocephalus and other hugely difficult complications.
Is it just luck of the draw? Or is it down to differing levels of medical care and expertise? Or are some preemies just born stronger than others? Maybe a bit of all those things. Whatever the journey though, however long or short, straightforward or complicated, having a baby in NICU is, without a doubt, one of the most stressful parenting experiences there is. And bringing up an ex preemie can also be pretty tough.
Life of a Preemie Mum 