“Finally bringing a child home you almost lost is, indeed, one of the greatest days you can face in your life.”
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…
But September 5 didn’t just happen. Amongst the past 69 days, September 2, 3 and 4 were key players.
It was Labor Day weekend. We came at it with a vengeance, spending almost every waking minute either with Oaklee or preparing for Oaklee to come home.
On the 2nd, we took what would become our last few moments to ourselves for a while. We slept in and then began the large task of giving our house a bath. We left no speck of dust or dirt or germ behind, knowing we’d very soon be bringing home a child with a compromised immune system. We got up to the hospital after lunch and committed to being there for three of Oaklee’s eight Care Times. Oaklee ate best for us, and we needed her to be at her best in order to make it to the next step soon.
We snuck away between her 3:00 pm and 6:00 pm Care Times to treat ourselves to a nice dinner out – something we’d not done since our 20 week ultrasound back in early May – and then we made our way back to make sure we were the ones feeding our girl. After the nurse’s shift change at 7:00 pm, we chatted with our nurse, Nurse T, and got her on Team Oaklee. Our chat sounded something like this:
“Listen, we’re getting out of here. Oaklee is coming home as soon as possible, and we need to know you’re going to do everything you can to make that happen.”
Nurse T nodded and said, “Of course.”
“We need to know you’re going to tell the next nurse at shift change the same thing.”
“I can do that.”
We’d learned over the past week that you’re either on Team Oaklee or you’re not and there was no place at Oaklee’s bedside for someone who was not on Team Oaklee.
In the morning of the 3rd, Oaklee had eaten well enough to be switched to the ad lib, on demand feeding style, the next step. This meant she had a minimum amount of milk she had to take in any given 6 hour period over the course of 48 hours while continuing to gain weight. She failed in her first 6 hour window, and started over in the afternoon. This is when Kevin and I jumped on pins and needles. We spent the bulk of our day up at the hospital, feeding her ourselves despite being blessed with another nurse who was on Team Oaklee. Nurse T came back that evening.
We chose not to share the possibility of Oaklee coming home in 48 hours with our family or friends because we’d been sending out so many back and forth updates over the past several months and didn’t want to place another level of pressure on these final days. We were already the ones who were checking in at weird hours to see if Oaklee was still doing it. I called Nurse T at 2:00 am while pumping to ask how it was going. Oaklee was still successful.
On Monday, Labor Day, we enlisted the help of my husband’s parents to finish up that house bath before, again, spending the vast majority of our time up at the hospital. Oaklee had another great nurse that day, and Nurse T returned for the night once again.
Still successfully meeting her eating requirements, we knew Oaklee could potentially be coming home the next morning. Nurse T had to all but pry my fingers from Oaklee’s bed to convince me to go home Monday night. I didn’t want to risk not being the one to feed her in these last 12 hours, but I also knew this was my last opportunity to sleep well.
We left around 10:00 pm. I slept like a child leaving for Disney World in the morning.
I called Nurse T again at 2:00 am. Oaklee was still doing it. We woke up in time to get ready for work in case that’s where we were headed, but when I called Nurse T at 7:00 am, our day, our week, our lives forever changed. We notified our bosses we would not be coming into work today. In fact, I was, instead, beginning my 8 week maternity leave.
We ran some errands that morning which included moving breastmilk from our deep freezer to my parent’s to make room for the breastmilk we’d be bringing home from the hospital’s freezer (and leaving approximately 250 oz of breastmilk in a cooler on the floor of my parents garage, which we’d discover days too late and I’d literally cry over). And then we made our final drive to Parking Lot 3, our final ascent to Floor 3 and our final walk to Area 11.
We walked in the room like we owned the place. Oaklee’s nurse, Nurse R, was one who’d been on Team Oaklee from the start and one of the nurses we’d asked to be a primary nurse for Oaklee. She greeted us with a big grin despite the chaos the room was currently in with doctors rounding and special teams coming in to work with a baby who was regressing. Among final reviews from a few different teams, we had to wait until we’d been given Oaklee’s discharge summary. Oaklee was easily passing her final reviews and so we sat, patiently, watching the scene unfold around us, itching to bring our baby home.
Eventually, Dr. D – the doctor who gave us our first neonatal consult, the one who got on board with our two week goal – came over and began our discharge summary. She walked us back through Oaklee’s NICU stay.
- Oaklee was admitted on June 29 at 2 lb, 12 oz, 15 in.
- She spent 2 days on the high frequency oscillator, 1 day on the ventilator, 35 days on the CPAP and 13 days on the nasal cannula.
- She was treated for Respiratory Distress Syndrome, Pulmonary Hypoplasia, Pulmonary Hypertension, a Pneumothorax, Apnea of Prematurity and Chronic Lung Disease.
- She received Nitric Oxide for 1 day, Curosurf for 1 day and Caffeine Citrate for 45 days.
- She was diagnosed with Patent Ductus Arteriosus, which resolved by July 3 and Patent Foramen Ovale.
- Her cranial ultrasounds came back normal.
- She was treated for Osteopenia for 8 days with Ergocalciferol.
- She was treated for Sepsis for 3 days with Ampicillin and Gentamicin.
- She was treated for Indirect Hyperbilirubinemia for a combined 7 days.
- She was diagnosed with Anemia of Prematurity.
- She was given multivitamins and Ferrous Sulfate for 48 days.
- She was given Starter TPN for 1 day and Total Parenteral Nutrition and lipids for 5 days.
- She was given Prolacta for 36 days, Prolacta Cream for 23 days and Liquid HMF for 32 days.
- She was being discharged with the active diagnoses of none other than Prematurity, Anemia, Chronic Lung Disease and Patent Foramen Ovale.
- After 69 days in the NICU, Oaklee was ours to take home… with no NG tube in tow.
When Dr. D concluded, there was nothing left to do but collect our things and go home. After “cutting the cord,” Kevin went to the Nutrition Room to pick up my extra breastmilk and take it to the car. I changed Oaklee into her homecoming outfit and stood there in the busy room, holding my completely cord-free baby for my first time ever. I asked Nurse R if I could leave the room with her while I waited for Kevin to come back. She said yes so, for the first time, I walked out of Area 11 with my baby in my arms. Upon Kevin’s return, we packed up the last of our things, made our way out to our car, and took our baby home.
Our days in the medical mile of Grand Rapids began over Memorial Day weekend. Now, over Labor Day weekend, they ended. And while, yes, June 29 was Oaklee’s birthday, September 5 was the celebration.
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower –> Discharge
In the stats:
Birth weight: 2lb, 12oz
Last known weight: 6lb 9oz (9.5.17)
Gestational Age: 37 weeks, 3 days
Days in the hospital: 69
Sets of visitors to see Oaklee: 52
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13