I want to start off by saying you’re doing a great job. You are probably overwhelmed with machines, and tubes, and IV lines connected to your tiny and extremely fragile baby. You are most likely running on very small amounts of sleep and large amounts of caffeine. Calling the NICU every time you can’t be there to snuggle your precious baby. You are scared to death when you hear the words brain bleed, acid reflux, Ng tube, spells, episodes, emesis, surgery.
I remember walking rolling into the NICU for the very first time and seeing my small baby connected to machines. I remember seeing a number on the bottom of her monitor.
The number on the bottom of her screen said 36 episodes. She was only born an hour and a half ago and she had already had 36 episodes. At that time I didn’t even know what that meant I just knew that it was not good. I learned a little bit later that episodes meant bradycardia episode where she would forget to breathe and her heart rate would drop.
She was so small and she had bubbles coming out of her mouth. She had several pokes from IV attempts and had such sensitive skin.
This little 3-pound baby scared me every day. She still scares me at two and a half months old.
Everything about having a baby in the NICU is scary. You will cry when you have to leave your baby. You will cry if you have other kids at home to take care of. You will cry out of anger and frustration and you will think of everything you did that made this happen, but I want you to know it isn’t your fault.
I had moms tell me all the time ‘she will be out of there in no time and it will be a distant memory’. And it is so true, but you won’t feel like it is true and you won’t feel like it will end or that you will ever go home. And maybe even a few days before coming home, your baby has a spell and her countdown to be able to go home will restart. You will feel defeated and heartbroken. The day we left her episode counter said 2 and both of those were a disruption in her connection. 47 days my baby was in the NICU while I stayed at a Ronald McDonald house (that was one of the greatest blessings). We were three hours away from our boys unless someone could bring them up for a week or two. It was so hard and I felt like it was never going to get better. But it did and as I type this I’m holding my sweet baby girl. Have faith and breathe.
It’s not easy right now momma or daddy and until it does get easier… breathe deep, take pictures, and snuggle that beautiful baby every chance you get. And get as much sleep as you can!