One Month

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.

7.30.17

“For being warned that this journey would be a rollercoaster, flip flopping between compressed/gavage and CPAP/no CPAP isn’t so bad considering where we started… I will be very ready to take Oaklee home when we get to. I’m grateful we’ve had a little more time to prepare at home, so in a weird way, this has been good, but I just want it to be over with now.”

On the 29th, Oaklee was one month old. She’d spent 31 days in Area 11 of the NICU. We’d spent 31 days going to and from our child who was confined to one of two rooms she’d ever been in. While she laid in her isolette, her only responsibilities sleeping, eating and breathing, we ran around like chickens with their heads cut off, always feeling like we should be somewhere else.

Any NICU parent – and especially a long term one – can tell you in some fashion about the schedule guilt they faced when their child did time in the NICU. Where should you be? The hospital? Home? Work? Surrounded by your friends and family? In hindsight, I see there was no right answer, but in the moment, I was convinced there was one and I was never getting it right.

I’m at the hospital, and I feel like I’m wasting my time, like I should be at home setting up our nursery.

I’m at home, and I feel like I should be with my baby, like I might be missing out on a “first” we’ll never get back.

I’m at work, and I feel like I should be surrounded by friends and family, like I can’t be myself with my co-workers because I can’t be emotionally eratic at work.

I’m surrounded by my friends and family and I feel like I should just be with my baby, like she’s the only person in the entire world that matters right now.

In so many ways our lives were both put on hold and expedited at the same time. We needed to be in several places at once, but we needed to focus on our baby. Deciphering what that looked like or how to do it best was no easy task.

Kevin and I struggled to say yes to our typical summer lives. Was it ok to enjoy watching a movie, sitting by a campfire, going boating or hanging out with our friends? Was it ok to enjoy being away from the stress of the hospital? Was it ok to enjoy anything when our baby was fighting for her life?

Throughout our first month of NICU life we learned we had to take time for ourselves or we weren’t our best selves for our baby. We learned we couldn’t be “doing” or “going” 100% of the time. We sometimes just had to “be”.

Unfortunately, the hospital is not a place you can just “be”. You don’t just get to snuggle with your baby on your living room couch in your jammies. You can snuggle, sure, but while you do, you’ll be half dressed in a room full of people with cloth screens as your only length of privacy and a monitoring of your baby’s hopefully good looking vitals as your entertainment. And mid-snuggle, you might have a nurse tell you it’s time to put your baby back in her isolette. Or you might have a doctor come in and chat with your half naked, skin-to-skin-practicing self about how your baby failed her trial off the CPAP. Or you might have an isolette across the room get filled with a new, critically ill baby fresh from her mother’s womb. You can’t just “be” in the NICU.

So every Sunday morning we would make a tube of Pillsbury cinnamon rolls and a pot of coffee and watch our church’s sermon from the previous week on a computer in our living room before going up to the hospital. On Saturdays we’d either sleep in and take care of things around the house before heading up and spending the second half of the day there or we’d get up early, get to the hospital and leave with enough time to run some errands or relax at home.

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.

It’d been one month.

We were exhausted.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 3lb 13oz (7/29/17)
Gestational Age: 32 weeks, 1 day
Days in the hospital: 31
Sets of visitors to see Oaklee: 29
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 25

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Pretty Important Gifts

In the baby shower process, I learned this:

There are a lot of things you need. There are a lot of things you don’t need. When you’re in our situation – one that’s abnormal, stressful and unideal – you need the thoughtful, special gifts just as much as the practical ones. Love is never superfluous, and when a thoughtful, special gift embodies love, that’s a pretty important thing.

7.23.17

“The nursery is really coming along. I still feel like there’s a lot to do, but we’re a lot farther now than we were when I was in the hospital.”

I’d always imagined I would be big and pregnant and unpacking my new baby things from my baby showers/setting up our nursery with great anticipation of the baby to come. For the one baby shower I had while still pregnant, I was at least pregnant – not big, and not unpacking baby things. After Oaklee was born, I had three showers to go. She wasn’t home so I wouldn’t be using the things I’d be getting anyway, but it felt so good to finally feel at least a little bit prepared.

Babies require a lot of stuff. My husband and I tried to take a more minimalist approach, registering for things we needed over things we wanted. We put a high priority on things like a carseat to get her home, a place for her to sleep, a way for her to eat and diapers. We skipped things like a bumbo, an exersaucer, a swing and toys. For the most part, we didn’t want to deal with the clutter long term, but we also didn’t want to deal with the clutter in our current state. We’d been in survival mode for too long. The idea of opening, setting up, cleaning and storing baby items we may or may not use in the near future was not enticing.

What are the basic things we need? That is all we hoped to get.

On the 22nd, I had my work baby shower and was pleasantly surprised with a great spread of well thought out gifts, each one practical/purposeful or special. I got things like our high chair and our umbrella stroller, and then things like Oaklee’s soft, flamingo printed lovie and a wooden “O” for her nursery. I felt so blessed and so much more ready for when Oaklee would come home some day.

On the 23rd, I had a little friends/family shower. Most of the gifts at this one were either incredibly practical or incredibly special. I got a tote full of diapers and burp cloths. And then I got what would one day become Oaklee’s very first baby doll. Again, I felt so blessed.

We had one shower to go, on the 25th, thrown by our small group, where we’d receive our carseat and books – a necessity and something special.

In the baby shower process, I learned this:

There are a lot of things you need. There are a lot of things you don’t need. When you’re in our situation – one that’s abnormal, stressful and unideal – you need the thoughtful, special gifts just as much as the practical ones. Love is never superfluous, and when a thoughtful, special gift embodies love, that’s a pretty important thing.

I hope this experience has even made me a better gift-giver.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 3lb 5oz (7/22/17)
Gestational Age: 31 weeks, 1 day
Days in the hospital: 25
Sets of visitors to see Oaklee: 25
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 18

Sponsor Oaklee's March of Dimes team.

The Blur

Three weeks postpartum and our lives are kind of a blur. When I try to recount these days, even referencing my journal, it’s majorly statistics – statistics that most normal parents don’t monitor quite so closely – that I remember. Oaklee weighed this much. Oaklee eats this much. Oaklee’s been on the CPAP this many days…

We’d begun to find our groove in the track no one wants to take, navigating yet another long term hospital stay. We were getting through each day simply to get through each day. Our constants were work, hospital, home and pumping. 

7.20.17

“What I can’t wait for is taking Oaklee on walks with me… that day will be so nice when it comes.”

Three weeks postpartum and our lives are kind of a blur. When I try to recount these days, even referencing my journal, it’s majorly statistics – statistics that most normal parents don’t monitor quite so closely – that I remember. Oaklee weighed this much. Oaklee eats this much. Oaklee’s been on the CPAP this many days…

We’d begun to find our groove in the track no one wants to take, navigating yet another long term hospital stay. We were getting through each day simply to get through each day. Our constants were work, hospital, home and pumping.

I changed my work schedule so I was working half of my part time hours of one of the two part time jobs I’d had before Oaklee. 12 hours – 4 days, 3 hours each morning.

After work, I’d go home, eat lunch and either head up to the hospital or run as many errands as possible before heading up to the hospital with Kevin after he got out of work. There was no down time. I’d spend my “free time” prepping three or four meals that we could pack up and take to the hospital, working on putting together our nursery or running our usual errands. How I longed to even just take the time to go for a walk.

Amongst the running around, I was pumping for 15 minutes every three hours and washing pump parts every. single. time. I loathed washing pump parts. I’d get up in the middle of the night to pump the milk for the baby I could not breastfeed, the one who was not even at my house, and wash my pump parts at 2:00am. It was a tether in a time I couldn’t afford to be tied down because I needed to be in three places at once.

Every minute not spent at the hospital was packed full of as much purpose as possible so we could spend as many minutes as possible at the hospital.

We were numb, shut down, single-minded.

I often get asked how people treated us during this time, but I wonder how I treated people during this time. I was not myself. In every way, I was an extension of my sick daughter. She was the only thing I cared about. She was above my schedule, my relationships with others, even my need to take basic care of myself.

Never have I lived my life more on the go, more determined to get through each day, more bull-headed than I did during this time.

I can’t tell you what was going on outside of Area 11 of the NICU in July of 2017 – if there was breaking news or inclement weather – but I can tell you exactly how many milliliters of breastmilk Oaklee was taking.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 2lb 13oz (7/15/17)
Gestational Age: 30 weeks, 5 days
Days in the hospital: 22
Sets of visitors to see Oaklee: 20
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 15

Sponsor Oaklee's March of Dimes team.

Rollercoaster One

Were we disappointed in a step back? Of course, but we also just wanted our baby to rest. A baby’s overall development depends so much on his/her sleep. In order for Oaklee to sleep well, she needed to not have to work so hard to breathe. Accepting this step back was like giving our daughter a break, telling her to just relax – she has time to get better. 

7.13.17

“She’s just working too hard to breathe and burning too many calories… On the CPAP, she can relax and sleep soundly.”

We were told the NICU journey will be like a rollercoaster. It’ll have its ups and downs. Your baby will take two steps forward and take one back.

But up until the 12th, Oaklee had only taken steps forward. She’d only gone up.

Oaklee started in such a critical place that she couldn’t afford to take steps back. Taking steps back would have meant her life was on the line again. While many babies in the NICU do dance on that line time and time again, we were incredibly fortunate to have gotten this far before taking a step back.

Oaklee returned to the CPAP. Many parents fret over a CPAP, but we’d seen the darker part of the dark side – a CPAP was nothing. When Oaklee returned to it, we sighed and said, “Well, we had to go backward eventually, right?”

She’d proven she could breathe on her own. Her lungs were capable, but they were working harder than she could afford, burning excessive calories and limiting the Grower part of our Feeder Grower. More than she needed to feed and grow, she needed to rest and relax.

It’s like running a marathon you trained a week for, being premature. You could do it well in fits and starts. You could get to the finish line. You might need assistance here and there. But the most efficient way to do it might just be to take it slowly, allowing your body the opportunity to accomplish such a feat without destroying itself.

Were we disappointed in a step back? Of course, but we also just wanted our baby to rest. A baby’s overall development depends so much on his/her sleep. In order for Oaklee to sleep well, she needed to not have to work so hard to breathe. Accepting this step back was like giving our daughter a break, telling her to just relax – she has time to get better.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP

In the stats:
Birth weight: 2lb, 12 oz
Last known weight: 2lb 7 oz (7/3/17)
Gestational Age: 29 weeks, 5 days
Days in the hospital: 15
Sets of visitors to see Oaklee: 16
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 8

Sponsor Oaklee's March of Dimes team.