Whenever I’m asked, what’s the best advice you can give to a parent of a child in the NICU, my first response is always, “Get to know the other parents”. I would never wish a sick child on anyone, but I was so happy to not be alone each day that I spent at the hospital.
My first mom connections were in nursery two.
Owen set, what must be some sort of record at the Amplatz NICU in that he held the same spot, Bed 2B, for 100 days. When we first arrived, we were the only tiny baby in the room. Most of the others had gotten bigger and were about to move to the graduation rooms. However, within two weeks there were only four babies (three families) in that room and all were 24 weekers that were born within two weeks of each other. All four babies were very sick – at one point there were four oscillator ventilators going in the room. It was noisy and impossible to control the temperature. Nearly every day the doctors started rounds in nursery two – they tend to start with the sickest babies. There were almost always 3-4 nurses and they worked non-stop, often being forced to take their breaks.
In my mind, those two mothers were the only people in the world that had any idea what I was going through. We actually talked very little, but we didn’t need to, you could see everything by the look on the parents’ and nurses’ faces. You always knew if it was a good day or bad day. Babies, even at 24 weeks, have personalities. Early on, I had never been up to the incubators of those other babies to see their faces, but I knew them. I knew their personalities and I loved and still love them like they are my own. They were just like Owen and their moms were just like me.
One of those four babies didn’t make it. Not a day goes by that I don’t think about him. I will never understand his mother’s pain, but having been so fearful for Owen just days before, I can just begin to come close to understanding. I also felt like Owen lost a friend – his first best buddy – the baby who fought beside him.
Today, my relationship with those two mothers is a lot like it was in the NICU. We don’t connect frequently, but each connection is important and valued. When we were in some of our darkest days in the NICU, one of the mothers from Nursery two sent me an email that simply said something like, “I hope you have less ‘this sucks’ moments soon”. It made me laugh, here is a woman who I barely know and she get that Kyle and I had just been talking about how much “this sucks”. I felt understood. The other mom from Nursery Two has told me frequently how she cried for Owen as often as she cried for her own son. I believe her, because I can say the same about each of those three 24 weekers that shared a nursery with Owen. When the two left the NICU weeks before Owen, I proudly updated the nurses on their status like I was bragging about my own children.
A little further into our stay in nursery two, more families started to join us. I became very close to the mother of one of Owen’s neighbor. I knew her baby was sick; he was in the bed they reserved for the really sick babies. Since we had been in the room for 8-9 weeks at that point, I felt like the personal welcoming committee. I introduced myself to her and she loved seeing a baby as big as Owen (he was probably 5 pounds). As she got to know him and his story better, she watched over Owen like a second mama bear. When my breast milk ran out and the donor milk was no longer available to Owen, this mom donated her milk. We say our boys are “milk brothers”. Fortunately her baby didn’t stay in that “sickest spot” for very long and we still chatted across the room to each other and then we became neighbors again when both boys were in nursery 6. Almost a year later, I still communicate with this mom most days. She’s often just behind Kyle when I text good or bad news about Owen. I was thrilled to get a text from her the other day letting me know that her son started crawling. He’s not my child, but I celebrate his success like he is.
Toward the end of Owen’s stay in Nursery Two, I started my leave of absence and spent more time in the hospital during the day. I then got to know more mothers and learned there were many other tiny babies like Owen. There were other babies whose intestines perforated, there were other babies with CMV and even one baby who, like Owen, had both. I had friends who understood my new language. There were people who knew the nurses and doctors and could share tips in managing the babies care. I met mothers who understood what it was like to so intensely pray for your child. Most importantly, I had friends who knew my baby – they were some of the few people outside of doctors, nurses and immediate family who were able to see him in person. It felt like these women knew my baby best.
As time went on, our friends, one by one, graduated and there were only a few mothers who were there as long as we. Of the three oldest, Owen was there the shortest time. Looking at these women who had been there longer, watching their babies struggle even longer than I, it was clear that I had to keep into perspective that a lot of people had it easier, but a lot of people also had it harder. The journey is individual and the path out of our hands, but you never have to look far to find a mom who hurts, prays and loves beside you.
Thank you, to all my fellow NICU moms who have helped and continue to help me navigate my journey as you march you own. And thank you, social media, for helping us stay connected and continue to meet other moms with similar stories.© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster