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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An Overabundance of Gold

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.

7.26.17

“It still doesn’t feel like this is actually happening. It feels like I’ll wake up one day and be 8 months pregnant and doing my normal life… For all the fear, panic, pain and frustration we’ve experienced, even this current, less-than-ideal situation is worth it.”

We were still riding Rollercoaster One, the breathing battle, when Oaklee was four weeks old, but we were simultaneously taking our seats and getting strapped in on Rollercoaster Two, the feeding battle.

Oaklee was taking less than one ounce of breastmilk every 3 hours through an orogastric tube (OG tube). On the 25th, she switched from compressed feedings (feedings at a specific rate to give her body a chance to slowly get the food down and digested) to the classic gavage style feedings (still through an OG tube, but feedings that progress at the rate at which gravity allows). Her feeding tube was orogastric as opposed to nasogastric (NG tube – the preferred way) because her nose was covered by her CPAP.

We needed Oaklee to breathe on her own so she could make progress with feedings. Bottle and breastfeeding were off limits, so long as she needed the CPAP. In other words, we couldn’t actually ride both rollercoasters at once. This meant pumping for mommy – a lot of pumping, which caused a lot of overproduction.

8 times a day, Oaklee was receiving less than 1 ounce of breastmilk. 7-8 times a day, mommy was pumping 8-14 ounces and dutifully bottling it up, labeling it with Oaklee’s medical record number and dropping it off at the nutrition room at the hospital.

The nutrition room eventually called our nurse and asked us to stop by on our way out to take some frozen milk home. They suggested I freeze at home what is pumped at home and leave at the hospital what is pumped at the hospital. We’d just bought a deep freezer, and I’d already filled it almost half full of breastmilk alone.

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.

I was at the front end of realizing the significant problems. I was happy to be building such a great frozen stash, but I was in pain if I didn’t get to my breast pump in time. Still, this was the tolerable stage of our breastfeeding journey that would end up defining so much of the last quarter of 2017.

Quarter one: good pregnancy. Quarter two: bad pregnancy. Quarter three: NICU.

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

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 3lb 9oz (7/26/17)
Gestational Age: 31 weeks, 4 days
Days in the hospital: 28
Sets of visitors to see Oaklee: 26
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 21

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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

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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

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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

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Be good. We love you.

It was somewhere around this date, in the hype of the medical jargon and the chaos of me going back to work, that I realized I needed to tell Oaklee I loved her. While, in so many ways, the doctors and nurses owned Oaklee, being able to provide better care for her than I could, I provided one very important thing they could never provide. Love. 

7.10.17

“Aside from the feeding tube and the sensors, Oaklee just looks like the cutest little baby. We’re beyond smitten with her. She makes it really hard to leave each night.”

On the 8th, at just 9 days old, we got the news that Oaklee no longer required the assistance of the CPAP. She was continuing her onward and upward journey. While this was, of course, significant in her overall health progress, it was also significant because it meant we could finally see her adorable face. The only thing obstructing our view, at this point, was her feeding tube and the occasional phototherapy eye protection.

In addition to being off the CPAP,

  • Oaklee’s PDA (Patent Ductus Arteriosis) had closed on its own by the 3rd.
  • Her second brain scan came back clear, so there was no longer the threat of intraventricular hemorrhage (brain bleeds).
  • Her pneumothorax, the pocket of air in her chest outside of her lungs, was shown to have resolved on its own in her chest x-ray on the 10th.

She was essentially what’s called a “feeder grower” at this point, a baby that is only in the NICU to learn to feed and get her weight up and has no other medical concerns. Less than two weeks ago, we thought we were losing her. Now all she needed to do was learn how to eat and gain some weight.*

Oaklee, having been off TPN and lipids since the 4th, was receiving about 25 milliliters (less than one ounce) of breastmilk at each feeding. This was combined with Prolacta, a specialty nutritional formulation made exclusively from human milk for critically ill premature infants in the NICU to provide a higher caloric/vitamin/mineral/protein intake. She received this every three hours, but each feeding was compressed through a syringe of sorts over the course of two hours in order to give her newly digesting body the opportunity to digest slowly.

It was somewhere around this date, in the hype of the medical jargon and the chaos of me going back to work, that I realized I needed to tell Oaklee I loved her. While, in so many ways, the doctors and nurses owned Oaklee, being able to provide better care for her than I could, I provided one very important thing they could never provide. Love.

I remember feeling foolish the first time I whispered those three words to the baby who didn’t even feel like mine. I said, “I love you,” and then I turned around, left the room, and left my most fragile, most prized possession in the care of people I didn’t even know.

And then I remember feeling foolish for feeling foolish. That is my child. I will never allow her to question my love for her.

So every night, from that point on, my husband and I would wait until any guests left to have a moment, just the three of us. He and I would stand on each side of Oaklee’s isolette, our sanitized hands reaching through the holes to hold her hand or contain her, and we’d tell her to be good and that we loved her. And then we’d turn around, say goodbye to the nurses, walk the long halls of the hospital to the parking garage, get in our car(s) and drive home.

Our lives were a mess, but that didn’t change how much we loved her.

Oscillator –> Ventilator –> CPAP –> Feeder Grower

Onward and upward once more.

In the stats:
Birth weight: 2lb, 12 oz
Last known weight: 2lb 7 oz (7/3/17)
Gestational Age: 29 weeks, 2 days
Days in the hospital: 12
Sets of visitors to see Oaklee: 13
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 6

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P.S. I mentioned all Oaklee needed to do was learn how to eat and gain some weight. There were, however, other issues still at hand, though they may not have been issues that would have kept us at the NICU had she weighed a tad more than under 3lbs.

  • Oaklee was still, on and off, receiving phototherapy under a bililight for jaundice – an indication that her liver was not working properly – which, again, is extremely common in preemies.
  • Her PFO (patent foram ovale – a hole in her heart) had still not closed, but 1 in 4 people live with this condition their entire lives, many without even knowing it.
  • Regardless of being CPAP-less, she was still receiving caffeine citrate for treatment of apnea of prematurity. Preemies will sometimes literally forget to breathe regardless of knowing how to breathe. In order to come home, she was going to need to prove she could go an extensive amount of time without caffeine. They would not pull the caffeine until her oxygen saturations and respiratory rates were satisfactory enough for them to believe she was not going to forget to breathe.

Onward and Upward

7.3.17

“We’re so proud of how she’s doing so far and very optimistic about all of this. She has a great team taking care of her, which is a major blessing.”

We felt optimistic about the progress Oaklee had made, having been switched to a vent on the first.

We felt like parents, having finally gotten to hold our baby on the second.

And then we entered into a totally new stage – yet another one we’d neglected to think about/prepare for (as if we could) – one where we’d navigate, together, home, work and hospital.

July 2 was my first time in a car since May 26. My husband and I drove home together after spending the morning and afternoon with Oaklee and then going through my discharge instructions. Everything felt odd about that day. I was going home. I was nowhere near recovered. I was leaving the hospital I had been bound to for 37 days. I was finally going to sleep in my own bed. But my baby was staying.

When we got home, we took naps before unpacking the boxes of my stuff that had accumulated at the hospital. We were exhausted. After unpacking, we went to bed. It was the most sleep I’d gotten in months, and I even had to wake up twice to do the small little detail that never crossed my mind until after my baby was born – pump.

I wouldn’t say I neglected to think about the fact that my baby would have to eat, but I neglected to think about the fact that in order for that to happen, a lot of other things had to happen. Two hours after giving birth, when a nurse came in and asked, “Are you ready to pump?” I was caught off guard and asked for another hour before beginning that journey. Of course it was a journey I would take. I’d always planned on breastfeeding, but why it had never crossed my mind that pumping was going to be such a major part of this stage, I have no idea.

I went from waking up once or twice a night to a blood gush rush to waking up twice a night to sit with my pump for 15 minutes. In the beginning, my feet were so swollen and I was in so much pain that I pumped upstairs with my feet in a bucket of cold water and put the milk in a cooler that my husband would bring down in the morning. I was still using a wheelchair at the hospital for crying out loud.

On the third, then, we made our first trip to the hospital together to see Oaklee. We’d gotten a call that morning notifying us of significant progress. Oaklee had been extubated around midnight. She no longer required the assistance of a vent, and was switched to a CPAP machine. No one anticipated this much progress this fast for the girl who was “the sickest of the sick” and potentially not going to make it.

We’d been warned that NICU time is usually like a rollercoaster, but so far, Oaklee had only moved onward and upward – and in significant ways.

While breathing issues were of the greatest concern for Oaklee, it’s worth noting that in this first week, we were dealing with other issues, potential threats and standard NICU/preemie things.

  • Oaklee had to be in the midline position (her head central) to reduce the risk of intraventricular hemorrhage (brain bleeds) for an entire week. After her second brain scan, we could turn her head as long as the results came back clear.
  • Above colostrum swabs, Oaklee received her nutrition in the form of TPN (Total Parenteral Nutrition) and lipids through an IV until her body learned how to digest as she was born before the gestational age in which this takes place.
  • With a body so small, Oaklee’s blood was tested daily and she was often given certain vitamins via IV depending on what she was lacking that day. More often than not, she was low in iron. Anemia is extremely common in preemies.
  • She spent a significant time receiving phototherapy under a bililight for jaundice – an indication that her liver was not working properly – also extremely common in preemies.
  • They monitored her pneumothorax with daily chest x-rays until it resolved on its own.
  • They monitored the PDA in her heart, with hopes that it would close on its own. PDAs are very common in low birth weight infants and, therefore, preemies.

In her first week, Oaklee had more x-rays and brain scans and medical tests than most people have in a lifetime.

And still, she was making significant progress.

Oscillator –> Ventilator –> CPAP

Onward and upward.

In the stats:
Birth weight: 2lb, 12 oz
Last known weight: 2lb 7 oz
Gestational Age: 28 weeks, 2 days
Days in the hospital: 5
Sets of visitors to see Oaklee: 8
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 1

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Transfused

On the 30th, the day after Oaklee was born, I spent most of my day trapped in my room on the OB Special Care Floor. In the morning, I asked my nurse to remove my IV. I was so excited to finally be rid of my shackle, but the nurse was shocked I had not yet been notified of my pending transfusion.

My hemoglobin was a 6. 12-15 is normal for women (10-14 during pregnancy), but between the pregnancy and the cesarean, I’d lost so much blood. They ordered two units of blood and asked me when I wanted to sit through the transfusion. Not realizing quite how long it was going to take, I suggested we start right away to get it over with. I wanted to be done focusing on my own medical needs so I could focus on my daughter one building away.

7.1.17

“Tonight marks my final night in the hospital after a 5 week and 2 day stay. Celebrating with fireworks, mock tails and kettle corn made it all too perfect. Such a bittersweet night as Oaklee takes my place as the patient. She’s a strong one. We love her so, so much.”

On the 30th, the day after Oaklee was born, I spent most of my day trapped in my room on the OB Special Care Floor. In the morning, I asked my nurse to remove my IV. I was so excited to finally be rid of my shackle, but the nurse was shocked I had not yet been notified of my pending transfusion.

My hemoglobin was a 6. 12-15 is normal for women (10-14 during pregnancy), but between the pregnancy and the cesarean, I’d lost so much blood. They ordered two units of blood and asked me when I wanted to sit through the transfusion. Not realizing quite how long it was going to take, I suggested we start right away to get it over with. I wanted to be done focusing on my own medical needs so I could focus on my daughter one building away.

Part way through unit one, my IV busted. While, sure, someone else’s blood was going into my veins, I panicked because someone else’s blood was dripping down my arm. I’m sure this is not true, but this was the first nurse I thought, in the moment, was unqualified. She wasn’t certain what to do about the busted IV or her panicking patient whom she’d just met for the first time that shift. My husband was over with our daughter and I hissed between my teeth into the phone, “Get. Back here.” The nurse slowed the flow of the blood, finished the unit, removed the busted IV and I faced my 7th IV start… post-partum. I was irate. After everything I’d been through, this put me over the edge.

I was disgusted. I was tired. I wanted to see my baby.

The report was that Oaklee was doing a bit better that morning. They’d bumped her down to 20-30% support on the oscillator, and the talk wasn’t revolved around whether or not she was going to survive so much as when could they give her less and less support.

After sitting six hours through my transfusion, I finally took a shower before two sets of Oaklee’s uncles and aunts came to visit. Again, we stared through the plexi-glass at her tiny, little body, her chest puffing a mile a minute from that oscillator. 2lb 12oz at birth, she was now on her way to her lowest known weight, 2lb 7oz. I watched as my husband changed his first diaper on a baby smaller than the baby dolls I played with as a child. Even this made me cry.

By the first of July, my final day as a patient, Oaklee made the switch to a conventional ventilator (see mechanical ventilator). Most parents panic if their child requires the assistance of a ventilator. We celebrated. She tolerated the switch well and, so long as she proved a vent was right for her, we would get to hold her soon.

After another aunt/uncle visit, we watched the Grand Rapids Independence Day fireworks I was counting down to from the corner room on the OB Special Care floor. We mixed virgin Moscow Mules and ate kettle corn, celebrating the end of my stay, but also not wanting to leave. Our friends were there. Our lives were there. Our baby was there.

A couple of our former nurses came in that night to say goodbye to us. Each one reminded me I did everything I could. Each one echoed every doctor we talked to along the way, telling me there was nothing I could have done differently. Deep down, I know these things are true, but throughout much of my pregnancy, it was as if my body and mind were two separate people. My body knew there was nothing I could have done differently, but my mind was so frustrated by the route my body was taking. Mentally, I could not fathom why my body allowed this to happen. It was better than that. I took good care of it. I took pride in it. And then I became pregnant and it didn’t do it right.

I will always believe my body failed me despite knowing that yes, there truly is nothing I could have done differently.

I will also always hurt a little bit when I see pictures of brand new, smiling, healthy families in the hospital – mommy, daddy, day old baby. I want that for everyone, I really do, but I also wanted it for me. Instead, I got two units of blood, another IV start, three days without a shower, two hospitals to navigate and, above the concern about my own health, the concern about the health of my brand new baby who wasn’t just kept in a different room, but a different hospital.

Still, I rejoice with those who have happy births. I want moms to be healthy and babies to be strong. I don’t ever want someone’s post-partum picture to look like mine.

Post Partum

(When talking with my husband, neither one of us knows why this picture was taken, but both of us look back at it and see how perfectly it sums up this day for us: Exhaustion. Transfusion. Pump. Unwashed hair. Phone nearby.)

In the stats: 
Days in the hospital (Mandi): 37
IV starts: 7 (14 IV pokes)

Gestational Age: 28 weeks
Days in the hospital: 3
Sets of visitors to see Oaklee: 5

Sponsor Oaklee's March of Dimes team.

Birth Day

Dr. L made it very clear that our baby might not make it. There was nothing more they could do. Her lungs, the ones that had been constricted in her body that’d been shrink-wrapped in my waterless womb, were being put to the ultimate test 12.5 weeks short of the amount of time they needed to properly develop. They just weren’t ready.

Dr. L left us alone. We sat with the news like an elephant on our chests. It was 6:00 am. We hadn’t yet told our families we were going into delivery, let alone, that our baby had been born. We hadn’t even shared her name with a single person. And now we wondered if we were losing her.

6.29.17

“We know Oaklee has a long journey ahead, but we couldn’t be more proud of her. She’s beautiful. She’s a major blessing. She made us parents, and for that we are thrilled.”

A continuation from Trip 6.

I didn’t sit alone in recovery room number one for long before my husband found his way back to me from our baby’s shared room over in the NICU. He’d been asked to leave the room for a sterile procedure they were going to perform on our baby, the placement of an umbilical cord IV of which they could not get done.

We briefly caught up on what little bit had happened between the operating room and our next steps before Dr. L, the neonatologist working with our baby came in to give us an update that shattered us. We’d gotten to 27 weeks and 5 days. That meant we were so close to a 95% chance of survival, yet here was Dr. L telling us, with a somber look on his face, that our baby was requiring more assistance than they’d anticipated.

He said, “I’m going to be honest, we have probably 80 babies over there right now, and if she’s not the sickest baby there, she’s in the top three.”

He went on, lacking optimism, to explain our situation. Our baby had been placed on a high frequency oscillator for respiratory support at 100%. This was the maximum amount of support they could give a person through the highest level of machinery that could be involved.

And still, they were pulling out all the stops.

She was being given nitric oxide, a treatment believed to help the blood vessels in the lungs to relax and improve breathing. She was undergoing pulmonary surfactant therapy to treat respiratory distress syndrome. They’d detected a pneumothorax, a pocket of air outside her lungs, indicating a leak somewhere that may require the placement of a chest tube. She had patent ductus arteriosus (PDA), an improper blood flow through her heart… Things like jaundice and anemia weren’t even mentioned in this brief meeting, because they were meaningless in the grand scheme of things.

Dr. L made it very clear that our baby might not make it. There was nothing more they could do. Her lungs, the ones that had been constricted in her body that’d been shrink-wrapped in my waterless womb, were being put to the ultimate test 12.5 weeks short of the amount of time they needed to properly develop. They just weren’t ready.

Dr. L left us alone. We sat with the news like an elephant on our chests. It was 6:00 am. We hadn’t yet told our families we were going into delivery, let alone, that our baby had been born. We hadn’t even shared her name with a single person. And now we wondered if we were losing her.

When we thought we’d mustered up the courage to tell at least our parents, we took turns crying through phone calls, “We had our baby. She’s not doing well. Her name is Oaklee. Please tell our siblings for us. Please pray.”

Again, we found ourselves thinking about the end of a life at the beginning. With every extra day we’d fought for in the past 35, we thought we’d moved past having to think this way.

When I’d recovered enough, the nurses took the both of us, me still in my bed, over to the NICU to see her for the promised 5 minutes I would get with her before focusing on my own recovery. Dr. L shared with us, bedside, the small bit of progress Oaklee had made, noting she may be beginning to stabilize. Still, I gazed at my baby through the plexi-glass isolette, her tiny chest vibrating rapidly from the oscillator, her pulse ox glowing, her body covered with wires and sensors and I cried.

This is my greatest failure in life.

I tried so hard to stay pregnant for her, but there was just nothing I could do. I was devastated. My body hadn’t just failed me, it failed my husband and, worse, it failed Oaklee. My part was done, sure, but it wasn’t done well.

The nurses told me it was time to go, and they wheeled me back to my old room. I ordered breakfast and we began crafting the message we’d send to our families and eventually our closest friends. No words felt right. I’d wanted to send the happy text – we’re parents! But I wasn’t certain we’d even be parents much longer. I couldn’t bring myself to even acknowledge in this first announcement what we were really facing, because I didn’t want to believe it myself. Instead, I landed on the disjointed, emotionless text below. She’s born. Her name is Oaklee. Please don’t talk to us.

“Good morning everyone. While you were sleeping early this morning, Kevin and I welcomed Oaklee Ann into our family. She is currently stable, but is having a lot of difficulty breathing. Please do not share our news with others, visit or expect us to be communicating much at this point as we navigate these first few hours… Prayers would be gratefully accepted.”

Many people say the day their baby was born was the best day of their lives. Mine was the worst. The day my baby was born was the day a doctor told me they were doing everything they could to save my child… and they still might not be able to save her. No parent should ever have to hear that.

At 4:09 am, I was relieved to no longer be solely responsible for the health of our baby. At 7:09 am, I just wanted her back in my war torn womb. I would have done anything to give her a better start. I had failed. I had failed. I had failed. And in the worst way – the way that could cost someone – my own daughter – her life.

We invited our parents to come see their granddaughter that night. With both visits, the four of us huddled around her little isolette. We stared at her and talked about how small and how beautiful she was. We ignored the elephant in the room – whether she was going to make it or not, this moment was sacred. The parented had become the parent. It was our Lion King moment, in a zoo sense – not allowed to hold our baby up, we showed her off through plexi-glass.

It was day one of a journey that would either be long or short. We prayed for long.

“She’s yours, God. Save her.”

In the stats: 
Gestational Age: 27 weeks, 5 days
Days of blood: 64
Days of bedrest: 85
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 7
Days in the hospital: 35
IV starts: 6 (12 IV pokes)
Magnesium drips: 5
Trips to Labor & Delivery: 6
Sets of visitors to see Mandi: 53

Gestational Age: 27 weeks, 5 days
Days in the hospital: 1
Sets of visitors to see Oaklee: 2

Sponsor Oaklee's March of Dimes team.