What can you expect after leaving the NICU?
Looking from the outside, the NICU journey only consist of the time spent between the NICU walls. This is far from the truth. Once your baby gets discharge, for a lot of parents this is just the beginning of another, sometimes lengthier journey.
Leaving the hospital may bring a lot of joy and excitement but also a sense of nervousness. For me personally, I got used to being in that room and having some form of security with all the nurses, respiratory therapists and especially the machines beeping at the slightest move, alerting us of anything. Once we went home it was really just our instinct.
My daughter didn’t come home on oxygen, she was weaned a few days before we left the hospital, therefore I decided not to purchase any oxygen or heart rate monitor. To be honest the first few weeks consisted of actually looking at her to determine if she was breathing and making sure she was fed every 2-3 hours to continue her weight gain. Then again some of this may be the reality of many parents of a newborn to some extent and not only preemie specific.
It depends on each preemie but for us we had several follow-up appointments lined up already at discharge. Just to name a few, we were referred to an ophthalmologist, pediatrician, neonatal follow-up clinic, audiology clinic, genetic, physiotherapy, occupational therapy, infant development and I’m sure I’m forgetting one or two.
I can honestly say that in term of managing all those specialist’s appointment, the first year was very challenging. I’m grateful that I was on maternity leave so work was not in the way and I could focus on finding the best schedule for us. On the bright side, I know now that it was more than necessary to be followed so closely after her rocky NICU stay.
In general, as parent, we look at milestones to see what our child is doing or not according to a certain age bracket. For our preemies those milestones are a bit different. Preemie first 2-3 years are calculated by “corrected or adjusted age”. From talking with fellow parents, I know how this can sometime be a source of concerns, however this journey has tough me to learn to celebrate every single milestone, from the smallest to the biggest.
Lastly once out and about in public, it was always a question for us to either use her adjusted age or her chronological age (counting from the day she was born). Be prepared for looks if you use the chronological age and your baby appears “small” to the eye. I personally choose to only use her corrected age when talking with anybody that wasn’t family, friend or medical professional. I think this way it removed the necessity to explain anything that I wasn’t comfortable doing.
At the end of the day, you do not have to explain anything you are not comfortable with. After discharge, the road may still be blurry for some of our preemies but on their own time they will get there.
