“59 days old today, and there’s a light at the end of the tunnel… We asked the doctor for a realistic goal of when she could come home. She said she doesn’t think two weeks is unrealistic. It would be so sweet to have her home by our anniversary (September 13).”
The 27th was a Sunday. Kevin and I had gotten up to hospital mid-morning with fire in our eyes. We’d set a goal, personally, to have Oaklee home by the time she reached the gestational age of 38 weeks. That would have been September 9. We’d been living this life far too long and, deep down, believed we may have been approaching the stage where Oaklee would flourish faster at home, under the 24-hour care of her own parents, than at the hospital, under the systematic care of doctors and nurses.
We caught Dr. D, the doctor who gave us our very first neonatal consult, on her rounds and asked her what a realistic goal would be of when Oaklee could come home. She said two weeks, aligning with our goal, putting the fire in our bellies and changing our mindsets. We would no longer simply visit Oaklee. We would strategically plan, prepare and build Team Oaklee to get her home.
But before I get ahead of myself, let’s go back.
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.
Still, I will do my best to give you a glimpse into what a day might have looked like for us in this time:
2:00 am – Mandi gets up to pump and goes back to bed.
6:00 am – Mandi gets up, showers, eats breakfast, gets ready for work and pumps.
7:00 am – Kevin gets up, showers, eats breakfast and gets ready for work.
7:55 am – Mandi walks to work. Kevin drives to work.
11:00 am – Mandi leaves work, walks home, pumps and eats lunch.
12:00 pm – Mandi either heads up to the hospital to be with Oaklee or runs errands/meal preps/does laundry/etc. In an effort to both keep our lives on track and keep me sane by not spending every possible moment at the hospital, generally twice a week I would wait until Kevin got home before going up to the hospital. While waiting, I would work on Oaklee’s nursery, go grocery shopping, cook several meals to be stored and reheated at the hospital for dinner, do laundry, mow the lawn… whatever needed to be done at home/away from the hospital.
2:00 pm – Mandi pumps.
3:00 pm – If at the hospital, Mandi assists with Oaklee’s “Care Time” (changing her diaper, checking her vitals and feeding her).
3:30 pm – Mandi does Kangaroo Care/skin-to-skin.
I attribute much of Oaklee’s progress to the love and care Kevin and I gave her. She needed God’s healing hand. She needed the medical intervention and the care of doctors and nurses. But she also needed love and bonding. I am whole-heartedly convinced that without any one of those three, we would not be telling the success story we’re able to tell. We not only visited Oaklee every day in the hospital, but we also talked to her, touched her, cared for her and at least one of us, if not both, did skin-to-skin.
5:00 pm – Mandi pumps.
5:45 pm – Kevin joins Mandi at the hospital. We heat up our dinner and eat, typically in the cafeteria of the children’s hospital.
Our most frequent meal was probably quiche as it was an easy, hearty meal, though I don’t know that we’ve had it since our hospital days given how frequently we ate it then. We did still receive many meals from friends and family, which was a major help during this time. It quite often felt as though food was a burden. Needing to slow down to go grocery shopping, meal prep and even eat the food took time away from Oaklee.
We also received several gift cards to the restaurants in the food court. This too, was an amazing blessing, and I would highly recommend gifting both restaurant gift cards and gas gift cards to someone in our position (and thank you immensely to everyone who did!). We generally saved our gift cards for when we were either in a pinch for food or just wanted to treat ourselves and not eat reheated quiche.
6:00 pm – Kevin and Mandi assist with Oaklee’s Care Time.
6:30 pm – Kevin does skin-to-skin.
7:30 pm – Typically, if we had guests, they came in the evening after the nurses’ shift change. They would often stay for an hour or so, largely just looking at Oaklee and chatting with us.
During her hospital stay, holding Oaklee was a big deal. Up until she was on a nasal cannula, getting her out of her isolette required the assistance of a nurse. Therefore, we didn’t let anyone else hold Oaklee until she was stable enough to be passed around a bit. At that point, we allowed only our parents to hold her. When you only get one to two hours to hold your baby per day, it’s hard to give that time to someone else – especially when you value so highly the bond created when you hold/touch your child.
8:00 pm – Mandi pumps.
9:00 pm – Any guests leave. Kevin and Mandi assist in Oaklee’s Care Time (which includes taking her weight at this particular Care Time).
9:30 pm – Kevin and Mandi say goodbye, make their way to the parking garage where we either each get into our cars (if I came up before Kevin got out of work) or we get into Kevin’s car (if we drove up together) and drive home.
10:00 pm – We prep for another day.
11:00 pm – Mandi pumps and we go to bed.
Confined to one room in the NICU if we wanted to spend time with our baby, some Area 11 hobbies we acquired were:
1 – Staring at Oaklee’s monitor, watching her oxygen saturations and respiratory rate go up and down.
2 – Scrolling through Facebook, Instagram, articles, etc. on our phones.
3 – Responding to work emails on our phones.
4 – Reading while holding Oaklee.
5 – Chatting with nurses.
Friends, some of my best pieces of advice to give you when approaching someone who has a child in the NICU long term would be these:
Give them space. I don’t mean to say don’t talk to them or visit. I mean, give them the space to do what they need to do or be who they need to be. Don’t assume you know what’s best for them. Open up your home, your time, and yourself and be flexible with the ways they may or may not utilize you. Instead of saying, “I’m going to drop off a dinner for you on Tuesday at 5:00,” say, “Is there anything you might need? I could mow your lawn, grab you some groceries, go to your house and do your laundry or provide a dinner,” and be ok if they say no. Your offer did not go unheard.
Also, tactfully ask lots of questions and listen to lots of answers. Don’t do your own research and assume you have a good handle on what’s going on. Let them send you notes on their experiences and what they’re learning along the way. If they share a term or concept you’re unfamiliar with, circle back and ask them to explain it. If you don’t feel they’re sharing enough with you, remind them that you’re willing to be a listening ear and that you care before asking detail-oriented questions.
Lastly, please keep in mind, while most NICU journeys share common themes, no two NICU experiences are alike. Though Kevin and I have been through the NICU stage of our journey, even we cannot turn to our next friend or family member who finds their baby in the NICU and know exactly what they’re experiencing. Instead, we’ll just pray none of our friends or family members find themselves there in the first place.
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower
In the stats:
Birth weight: 2lb, 12oz
Last known weight: Just over 6 lb (8/27/17)
Gestational Age: 36 weeks, 1 day
Days in the hospital: 60
Sets of visitors to see Oaklee: 47
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13