Our Preemie

Sweet September

Sweet September

Kevin and I celebrated three years of marriage on the 13th of September. It should not come as a surprise that our third year was our most challenging year. While it was challenging, there was no time for our marriage to suffer – we both knew there was a greater cause to attribute our energy to. But still, I will note that I can see how experiences like ours can make or break a marriage…

Homegoings

Homegoings

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…

Homecoming

Discharge

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 Will Gavage

We Will Gavage

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.

Day 124

Day 124

Our pregnancy had run amuck 124 days before August 27 on April 6. Since then, we’d seen bedrest at home, bedrest at the hospital, the birth of our incredibly premature baby, and our inauguration to the NICU world. So what did our lives look like in this NICU stage? It’s hard to really capture what our “average schedule” was, because nothing about navigating the NICU stage was average or scheduled.

Hitting a Wall

Hitting a Wall

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. 

Feeder Grower

Feeder Grower

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. 

Rollercoaster Two

First Bottle

I gave Oaklee her very first bottle. I did it just like I’d practiced with my baby dolls 25 years ago. She took half of it, which was great for a baby whose food has always just magically appeared in her belly. But over the course of the next couple of days, we would learn Oaklee had struggled with that first bottle. They put her back on the full gavage road and kept asking us to be there at certain times so we could chat with Occupational Therapy (OT) about feedings before being given the green light to feed again.

CPAP-less

CPAP Free

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.

Sensory Overload

Sensory Overload

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 …