Still haunted by the NICU

My poor littlest guy is sick. His little nose is stuffed up and he is cranky and miserable. He is my fourth child, so a sick baby, while not fun, is nothing new to me. Like all my kids when they are sick, I feel bad for him, but I also feel something else for him that I don’t normally feel with my other three, I feel scared. No, I’m not worried about him having Ebola or the enterovirus 68, I’m worried because he has a stuffed up nose. Such a simple thing that we all deal with from time to time, but for him it could become so much more. I guess this is just part of what life becomes after you bring a preemie home from the NICU.

My littlest guy is almost 9 months (7 months adjusted) and he has been out of the NICU for about 5 months now. Coming home for the NICU doesn’t mean he is done being a preemie though or that he won’t have more problems. Over the summer we end up in Children’s hospital for two weeks because he had gotten the Rhinovirus during its off season when no one at home seemed to be sick. He also had a cyst removed from his airway during that time. That was almost 3 months ago and he has been a happy, healthy baby who seems to be thriving since then, but that doesn’t stop my fears or erase his medical history.

Two months ago we went to a NICU reunion at the hospital my littlest guy was born at. This was a happy occasion in which we got to show off how healthy he was to all his old nurses and check up on his old NICU neighbor, yet I still had a panic attack the second we entered the parking garage and began to drive up past the fourth floor to park like I did nearly everyday for 77 days months earlier. My husband thought this would be cathartic release for me, doing this, but it wasn’t. Instead, a lot of old feelings and anxieties were brought back up and I found it very difficult to be there, even though we were on a different floor than the NICU was on. A few weeks later we returned to the Children’s hospital for a follow up scope. My son had showed no signs to make us think that the cyst had returned, yet I was still a nervous wreck that day. After the scope, he was laying in my arms, half conscious, and he let out a small cry. On his breath I could smell that sickening smell of the anesthesia they had used and I thought I was going to vomit as all the memories of those two weeks I spent living at that hospital with him came flooding back, along with all the fears and anxieties we were facing back then. My son’s scope came back fine and we were discharged from the ENT completely. As we left that hospital that day, I was happy to be leaving and hopeful of never returning, but I also felt a hint of hesitation and worry in writing this place off as a place I’d never go back to, knowing that there was always a possibility we could see the inside of a hospital room there again.

In the past month or so, as cold and flu season has approached, I’ve had lots of preparing to do to get us through this season. I’ve loaded up on vitamins, probiotics, and tried to take preventative measures with my older kids who are in school and bring home germs. I’ve become a hand washing dictator, constantly questioning kids, smelling hands, and making people rewash hands if I am not satisfied. I’ve stocked up on essential oils, homeopathic medicines, Tylenol, and Advil incase anyone does become sick. I’ve fought my insurance company and won to ensure that my littlest guy can receive RSV vaccine shots each month during the RSV season. I’ve cut back on taking the kids places were colds breed like child care at the gym, kid pits at the mall, and just about anyplace in the general public that we don’t have to go to.

Even with all this, my kids will still get sick and they will pass it on the my littlest guy, like they have done this past week. So now I wait, watch, and do all I can to help my son breathe and eat despite his stuffy nose. This year has not been great and has thrown us many curve balls, so I worry what else will come our way as we try to run down the clock of the last two months before we can hopefully start a new, healthier year. I fear that a simple stuffy nose with land my littlest guy back in the hospital because I know that with a preemie, it is a very real possibility. I’m not sure when this fear subsides or when things become “safe” for my littlest guy and I can begin to feel like he is just like all my other “normal” kids. Right now I’m just trying to make it through the first year and keep him healthy. Most days I am able to enjoy my littlest guy. I marvel at how much he’s grown and changed. I cuddle and kiss him. Behind all the smiles I give him though, are a hundred worried thoughts and a video recorder taking in that moment as a memory “just incase” because in my mind, he is still my little 2lb 12oz preemie who I fear won’t make it. He might have left the NICU, but the fears of the NICU haven’t left me.