My son Kyle has a story, already, at 7 months old. At day two of life he had a 5-minute seizure. His blog is here, but the short version is that he got a very scary diagnosis at day three of life that sent us to Children’s. Turned out his diagnosis is (almost) nothing to worry about. Kid’s a miracle and a champion and doing beautifully. We are lucky and blessed. Stories like Kyle’s do not always turn out with cheerful endings. We know this and feel it, deeply.
This is part one of a three part post. Today I’m going to talk about the NICU. In two weeks I’ll give some ideas on how to support a hospitalized family, and then I’ll wrap it up by giving you ideas to help care for a NICU family once they are at home.
For us, what made the NICU so scary was simple: overload. We got so much information, so fast, while trying to meet and bond with a new baby. We suffered from greatly from what a friend described as “information relay fatigue.” That would be listening to medical people and assessing our son, and then gathering that all into thoughts that others could understand and pass on to more others. We were exhausted before we even got to the NICU! Additionally I had to pump every couple hours and was recovering from birth. Everything felt so scary because it was just out of our control. We got an ambulance ride down to Children’s, our stuff hastily shoved into plastic bags. My husband had to take additional time off from work, and some dads can’t swing that. Our big kid didn’t understand where his brother was. Not to mention we had to sort through new updates about our baby every few hours and hear various opinions about our son. There was so much grieving. We were told more than once we could lose him.
If you haven’t ever been through a sick-baby scenario, I will walk you through ours. Both NICUs we experienced were open pod(s) where you could hear other (tiiiiiiny!) babies cry like kittens. New moms walked around like zombies, some still being wheeled around since they had c-sections. Monitors beeped for everything. You wait at your child’s bedside for doctors. No bags on the floor, gown and glove to be in there, ask before you do anything with or near baby. Stuff in a locker. Communal pumping room. No food or cell phones or loudness back by the babies. And mom, dad, and baby are isolated from their support network due to the nature of the NICU and visitation restriction. There just wasn’t room for any more than one guest. Our guests were often overwhelmed along with us, which didn’t end up being very helpful for anyone. We could go meet friends or people, or leave Kyle’s bedside, but we didn’t want to in case we missed something.
In the NICU the atmosphere is very hushed. Some of those babies don’t make it. Some of them are so, so sick. It’s a very intense feeling that changes on a dime based on the babies. Even if your kid is doing relatively well, there are so many emotions are flying about the pod. When a baby is discharged, you allow yourself the idea of maybe taking your baby home soon. It is elating and terrifying to think of caring for a baby that looks so vulnerable there.
Baby, meanwhile, spends a lot of time alone. Sure you can hold him but it’s A Procedure if they have tubes and cords. And sometimes it’s better to let them just sleep and heal. Baby is poked and prodded and IVed and stuck regularly. My son’s heels took 10 days for the bruises to go away. It took almost a month for all his “battle wounds” to heal. I counted.
All us NICU moms count that sort of stuff. We worry if the babies know us or are fearful when we (inevitably) leave them. We wonder what the nurses really think about our kid’s chances. We all want to snatch em up from their little beds. We learn which beeps are the scary ones and which ones to ignore. The learning curve is fierce- they expect you to know what’s going on and be ready to dialogue. It’s just hard, my friends.
Did you experience the NICU? In the next part of this series I will give tips for supporting a NICU family. Leave a comment if you have something that worked well for you or a friend.
Yes, this is spot on! My daughter spent a week in the NICU with a collapsed lung and it was nothing short of terrifying. I still remember the painful stares of the other parent’s as we took our baby home. I pray they got the chance to do the same thing…
Thanks Blair. Glad your daughter is doing well! Part two is coming on Friday.
Any advice on a baby in the NICU that’s far away?? My cousin is based in Japan. Theit baby will be born @ 33 weeks. His stay is anywhere from 2 weeks to over a month. I feel helpless for them. I am super close to my family and it has been hard being so far away. Besides the fact that our family that was able to plan a trip there after the baby came will not be going until the end of Aug. So they are all alone… Obviously, military families are a close group so they do have friends. Any ideas on how we could help from here.?
Cortney, that’s sweet and a great question! I’d say to post that on our Facebook page and ask for ideas. Otherwise, maybe send a box over of comforting things- some favorite foods, something unique with the baby’s name on it, maybe a book of photos of your family all holding up signs saying “we love you baby ___!” the hospital may also allow patients to receive emails so y’all could check in on that also?