Don’t get me wrong there is so much joy and relief, when bringing a baby home after a long NICU stay. And everyone is celebrating alongside you. But it isn’t that simple. The trial isn’t quite over.
You see if a baby is in the NICU for a long period of time, it means there are some pretty serious reasons. Often those things aren’t necessarily all resolved. They are just at a manageable spot that the medical professionals feel they are ready to go home. At least this was my experience with my son Eli after spending 66 days in the NICU.
Implications of a long NICU stay
Eli had a number of reasons for his long NICU stay. He was a preemie born at 32 weeks, had a blockage in his intestines that required surgery and struggled with feeding due to severe reflux.
On the outside it looks like the trial is over when you bring your baby home. It appears that you are back on the normal path of caring for a new baby – which isn’t easy even if everything goes smoothly. But there were new trials that we faced as we transitioned from visiting our baby in the NICU daily to having him home with his big sister.
New challenges at home
A stack of prescriptions accompanied Eli home. My phone was constantly chirping to remind me that it was time for another medicine. And this one needed to be refrigerated and this one taken an hour before eating. Caring for a newborn baby is an around the clock endeavor. But then add the medicine regimen and the constant calculating in my head never ended. It was always time for something – pumping, feedings or medicine. There were so many things to keep track of and it was a full time job to keep him healthy.
And then there were the extra appointments. We had in-home weight checks, regular pediatrician visits, follow-ups with his surgeon, appointments with the lactation consultant and more. We were having to balance getting him to these appointments while still having his sister’s needs and schedule to consider as well.
First time mom anxiety
Eli is my second baby. And my first baby was no walk in the park either with her at-birth Down syndrome diagnosis and 9 day NICU stay. But I felt more like a first time mom with Eli. There was more anxiety in a different way. In the NICU Eli’s heart rate would drop and he would literally stop breathing because of his severe reflux. He still had reflux when he came home, it wasn’t resolved, only manageable. When people heard he had reflux, they would relax because it’s such a common ailment that newborns struggle with. But this wasn’t your run-of-the-mill reflux; it wasn’t a fussy and uncomfortable baby, it was life threatening. So I would anxiously listen to him sleep in the bassinet near our bed. Often I wouldn’t sleep for fear that he would stop breathing.
A rushed adjustment to a family of four
With such a long NICU stay I burned through my maternity leave before he even got home. Luckily I was able to take unpaid time off. But I knew I needed to get back to work and couldn’t put it off forever. I ended up with 2.5 weeks at home adjusting to two under two before I had to go back to work. That’s not a lot of time to figure out this whole mom of two thing. I worked from home, so it wasn’t like I had to leave my baby. But because he was a preemie he was still in the newborn phase of sleep and feeding even though he was nearly 3 months old when I returned to work.
We were fortunate to still have a lot of support after the long NICU stay. Family watched our daughter while we went to extra appointments, our church brought us meals and friends still checked in regularly with us. There was so much joy and relief having Eli home, but it takes time to heal from the traumatic experience. And Eli wasn’t completely out of the woods, there was fear in those first few weeks that he would have to go back to the hospital.
Going home after a long NICU stay is a wonderful milestone and should be celebrated immensely. But the trial isn’t over for those families, so keep checking in on them, keep sending them meals and keep praying as they adjust to life at home after such a hard season in the NICU.
