If you’ve had a child in the NICU, you’ve seen something you can’t unsee. Even when my child was on the up and up, I sobbed listening to the grandma sing Jesus Loves Me to the three pound baby whom doctors had been swarming just hours before as he came out of surgery. Even when my child was coming home, I watched a mom and dad spend their last day with the daughter they’d never bring home. While our NICU stay was long, I truly believe you could have the peachiest, little NICU stay and still be changed by your experience. If your child has been in the NICU, your child has been a patient in an entire area of a hospital dedicated to saving the lives of the freshest of babes, often too fresh. The things you see, the vibes you feel, the stories you hear… you don’t get these anywhere else.
Our NICU days were over. Our dreams of snuggling our baby at home had come true. But our hearts were not unscathed from our successful experience. We did not escape without our eyes being opened to the hell that is an intensive care unit for newborn babies. In fact, on our very last day there, we saw the worst of it…
Ten days into our two week homecoming goal, I made a 7:00 am phone call up to the NICU to ask Nurse T, Oaklee’s night nurse, “Are we going into work today? Or are we taking our baby home?”
Nurse T responded, “You’re taking your baby home.”
And just like that, September 5 became the happiest day of my life…
We were five days into our two week homecoming goal. Oaklee still had her ups and downs with feedings, but her oxygen sats and respiratory rate were starting to maintain a healthy range. This indicated substantial progress in Rollercoaster Two, simply because she was given more opportunities to feed than before when she was most often tachypnic. So here’s what we needed to happen: Oaklee needed to prove she could consistently take, on average, 80% of her feeds by bottle or breast before her next step.
55 days old and I finally hit a wall today. I’m exhausted – mentally, physically, emotionally – exhausted. It was the first day I had the thought that maybe it would be better if I weren’t [in the NICU with Oaklee] right now. I just need time to re-energize. I can’t handle the noise, the busyness, the stress or the reliance on the opinions of others anymore.
As I previously mentioned, we were told the feeding part of the journey can be excruciating long. On this first day of respiratory-support-free-Oaklee, there was much to celebrate. She was breathing on her own AND she took her first approved, all parties in the know and on board, bottle.
Each trial off CPAP was incredibly nerve-racking on Kevin and me. Oaklee had trialled off and was successful in early July, but found herself back on just a few days later. We learned from this experience not to get overly excited when the word “trial” came up. On August 2, for example, the nurse removed her CPAP in the morning and when I made my way up to the hospital in the afternoon, I was afraid to hold her as her oxygen saturations tended to change when she was being held. Realistically, we could not call her successful off the CPAP if we could not hold her, so I knew I had to hold her in order to know if she was truly capable of breathing on her own or not. She was not that time.
But this time, we ventured down a different route. Oaklee seemed so capable, yet she wasn’t allowing herself to succeed without assistance. Therefore, our nurse suggested to the doctor we try a simple nasal cannula, giving her just a small amount of additional oxygen to rely on if need be.
8.6.17 “We want to take this girl home. We want to relax on our couch, just the three of us – no beeps, no nurses, no strangers, no pumping… we just want privacy, quiet, home. Being in the hospital is hard – as a patient or as the parent of a patient… We’re ready for …
In Oaklee’s first month, we learned that our NICU journey would be hard the whole way through. We learned that no matter how well our baby was doing, this part of the journey was still next to unnavigable. We were making progress, yes, but we were exhausting ourselves with both the places we needed to be and the perception of the places we needed to be. We were exhausting ourselves with our responsibilities, our relationships and our minds.
People call breastmilk liquid gold, and I was blessed with an overabundance of it, but there are significant problems with a body that produces 8-14 ounces of breastmilk every 3-4 hours. There are especially significant problems when the baby who’s supposed to be taking that breastmilk is only taking less than 1 ounce at a time.