NICU Awareness Day

If you’ve had a child in the NICU, you’ve seen something you can’t unsee. Even when my child was on the up and up, I sobbed listening to the grandma sing Jesus Loves Me to the three pound baby whom doctors had been swarming just hours before as he came out of surgery. Even when my child was coming home, I watched a mom and dad spend their last day with the daughter they’d never bring home. While our NICU stay was long, I truly believe you could have the peachiest, little NICU stay and still be changed by your experience. If your child has been in the NICU, your child has been a patient in an entire area of a hospital dedicated to saving the lives of the freshest of babes, often too fresh. The things you see, the vibes you feel, the stories you hear… you don’t get these anywhere else. 

For many people, the acronym “NICU” isn’t one they have to say more than a handful of times in their lives. It never becomes a concrete place. It’s never stored in their phones as a contact. It’s never the thing keeping them from truly being parents to their newborn baby.

There are some who never even know what “NICU” stands for.

Then there are those who’s friend or family member enters the NICU world with the birth of a child. They see it. They hear about it. They try to understand it.

And then there are the parents who, warned or not, have their babies whisked away for various reasons, and they live it.

Since Oaklee’s 69 day stay in the NICU (of which we were warned about given our pregnancy), I’ve gained and re-gained friends who can say, “Yes, I’ve been there too.” Almost immediately every time we take out a ruler – whose baby was smaller, whose baby was born earlier, whose NICU stay was longer – to know just on what level this comrade can relate. I’ll admit, given our situation, my husband and I struggle to consider a baby “premature” if they did not have to spend time in the NICU or if they were born after 34 weeks.

But the truth is, if you’ve had a child in the NICU, you’ve seen something you can’t unsee. Even when my child was on the up and up, I sobbed listening to the grandma sing Jesus Loves Me to the three pound baby whom doctors had been swarming just hours before as he came out of surgery. Even when my child was coming home, I watched a mom and dad spend their last day with the daughter they’d never bring home. While our NICU stay was long, I truly believe you could have the peachiest, little NICU stay and still be changed by your experience. If your child has been in the NICU, your child has been a patient in an entire area of a hospital dedicated to saving the lives of the freshest of babes, often too fresh. The things you see, the vibes you feel, the stories you hear… you don’t get these anywhere else.

NICU stays end on all sorts of levels of positivity and negativity, but each one changes the people involved.

I hope your experience with it is limited to our story or the stories of friends or family members who’ve already done their time. It’s NICU Awareness Day, but I pray you never have to be aware of what that world looks like.

Still, should you ever find yourself there, I wish I could remind you daily that God gives life out of muck and mire. It doesn’t always look like it did for us – the literal life of our daughter – but He’s there, and He has purpose.

Book Review – The Alice Network

The Alice Network includes the stories of the 1947 Charlie St. Clair (American college student, pregnant, unmarried and in search of her disappeared cousin, Rose) and the 1915 Eve Gardiner (young, single woman with a stammer, recruited to be a spy in the Great War in enemy-occupied France). Their worlds collide when Charlie turns up at Eve’s door, suspecting she may be the ticket to finding Rose. Together, they embark on a mission to find truth – what happened to Rose? And what’s left of Eve’s former life in the Alice Network?

My reading goal this year was 30 books. For the past 3 years, it’s been 24 – 2 per month, but I’ve always read 26-28. This year my life changed. I’m home a lot more. I’m forced to slow down more. I thought 30 might be realistic with a baby, but the more time I spent with my hobby, the more it became an obsession, so book 30 was finished in September and now I have three months to read extras. Oops!

Anyhow, a book sent my way by my mom and then chosen for Book Club…

Book 30:
The Alice Network
by Kate Quinn

Genre:
Fiction, Historical Fiction, War story, Spy fiction

Published:
June 2017

Synopsis According to Mandi:
Without spoilers, The Alice Network includes the stories of the 1947 Charlie St. Clair (American college student, pregnant, unmarried and in search of her disappeared cousin, Rose) and the 1915 Eve Gardiner (young, single woman with a stammer, recruited to be a spy in the Great War in enemy-occupied France). Their worlds collide when Charlie turns up at Eve’s door, suspecting she may be the ticket to finding Rose. Together, they embark on a mission to find truth – what happened to Rose? And what’s left of Eve’s former life in the Alice Network?

Favorite Quote(s):

“What did it matter if something scared you, when it simply had to be done?” 

-Kate Quinn, The Alice Network

Awards (based upon my brief research):
Goodreads Choice Awards Best Historical Fiction
Audie Award for Best Female Narrator

Pages:
503

My Overall Rating:
4 – I struggled with the first 200 pages. I wanted the story to move faster. But from that point on, I was so engaged that I couldn’t imagine the story ending. This was a phenomenal book. My only holdback from a 5 is the cute, fluffy, superfluous story of Charlie’s love life. That part felt predictable and unrealistic, yet the rest was so good that I’m still keeping this book at a 4. I loved learning about the work of female spies during World War II. I loved the three main characters’ personalities together. I love how engaged the book kept me. I would definitely recommend this one – especially to women.

Due Date

By the time we got to that September due date, Oaklee had been in the hospital for 69 days and home for 18 days. She’d grown heaps since being home. She weighed about 7.5 lb – which seemed huge to us considering she started at almost a third of that weight. While we were still frantic and trying to figure out how to take care of a baby, let alone, a long term NICU graduate, Oaklee was doing great. 

In these first weeks at home, I largely spent my time pumping, washing pump parts, sorting ounces of breast milk, mixing bottles, giving bottles and cleaning bottles. We were at the beginning of our bottle-to-breast journey and I was already getting burned out.

9.23.17

“We thought this day would be so different. Maybe we’d have a newborn. Maybe I’d be 40 weeks pregnant. Instead, we’re praising God for our 12 week and 2 day old sweet little miracle. Happy due date baby girl.”

I loved the idea of a September baby. Back on January 16, everything felt cookie cutter perfect. It was a new year, our lives were on a new track, we’d have one last summer to go wherever and do whatever we please, and by the holidays, we would have a newborn to dote on.

But by April 7, we knew we were on a different trajectory. We stopped looking forward to September and started praying for at least August, eventually even just July. And then at the end of June, Oaklee graced us with her minuscule appearance, 12 weeks and 2 days early.

By the time we got to that September due date, Oaklee had been in the hospital for 69 days and home for 18 days. She’d grown heaps since being home. She weighed about 7.5 lb – which seemed huge to us considering she started at almost a third of that weight. While we were still frantic and trying to figure out how to take care of a baby, let alone, a long term NICU graduate, Oaklee was doing great.

In these first weeks at home, I largely spent my time pumping, washing pump parts, sorting ounces of breast milk, mixing bottles, giving bottles and cleaning bottles. We were at the beginning of our bottle-to-breast journey and I was already getting burned out.

“I so badly wish I could cut pumping out of the equation. It requires extra gear and extra time, but I want so badly to nurse Oaklee, so it’s a must until we meet in the middle. I’m trying to navigate that change, but it’s hard. I want to know she’s getting well fed and not play this guessing game.”

At this point I was letting Oaklee try to nurse one time per day. Stop watch in hand, I’d time her and record how many minutes she was successfully breast feeding. She generally ranged anywhere from 5 to 15 minutes. Upon NICU graduation, we were advised to follow a breastfeeding sliding scale. If Oaklee nursed 0-8 minutes, we were to offer a full bottle after nursing. If she nursed 8-15 minutes, we were to offer a half bottle after nursing. If she nurses 15 or more minutes, we could consider it a full feeding and skip the bottle.

15 minute nursing sessions were rare, but when they happened, I cried. When they didn’t happen, I also cried.

When I didn’t try to nurse, Oaklee was getting precisely measured 80 ml (approximately 2.5 oz) bottles of breast milk mixed with Human Milk Fortifier (HMF) for additional calories/nutrients. We would gradually increase this number as we felt she could take more, constantly encouraging her to eat more, gain more weight and grow faster. The pressure for more, more, more was very real.

Yes, she’d been discharged, but on the condition that we’d push her hard, if not harder than the NICU had pushed her. We had to prove she could thrive to the several doctors and nurses who would be following her post NICU.

Eat. Gain. Grow.

No, she wasn’t a feeder grower anymore, she was just a baby, but one who’d been asked to do things for the past 12 weeks and 2 days that she wasn’t supposed to do until today.

Just focusing on growing was a colossal task in itself, but 12 weeks and 2 days ago the focus was merely on living and Oaklee achieved that, so…

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 6lb 9oz (9.5.17)
Gestational age: 40 weeks
Actual age: 12 weeks, 2 days
Days in the hospital: 69
Days home: 18
Appointments since home: 2

Book Review – The Line That Held Us

The Line That Held Us is about an accidental murder in the Appalachian mountains that leads to a tangled web of lies, threats and crimes, but comes back to just how far you’re willing to go for a loved one.

I really went out on a limb with my August Book of the Month selection. Crime Fiction is probably in my bottom two genres of choice, but I decided to push myself… even when two of the other available books from BOTM were already on my to-read list (I couldn’t decide between the two, so I went with neither. That adds up somehow, right?).

Book 29:
The Line That Held Us
by David Joy

Genre:
Appalachian Noir, Crime Fiction

Published:
August 2018

Synopsis According to Mandi:
Without spoilers, The Line That Held Us is about an accidental murder in the Appalachian mountains that leads to a tangled web of lies, threats and crimes, but comes back to just how far you’re willing to go for a loved one.

Favorite Quote(s):

“Sometimes proximity was all that a person needed and that simple act of being close carried no need for sound.” 

-David Joy

“The world is awash with miracles, he thought. How marvelous to simply bear witness.” 

-David Joy

Awards (based upon my brief research):
None yet.

Pages:
256

My Overall Rating:
3.5 – I read this book in 2.5 days. I couldn’t put it down. On one hand, it was a truly engaging story. On the other, I took the “rip it off like a bandage” approach to avoid the risk of nightmares for weeks because crime fiction… yikes. The plot was very well thought out. It was deeper than I anticipated. However, there were detailed scenes I wish I did not read the details of (and felt they were unnecessarily added) and I felt the conclusion lacked closure to some respect.

If I were a regular crime fiction reader, I might have enjoyed this book more, but as a one-off, it was a lot to handle.

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…

9.13.17

“A big part of me feels like my fear of losing myself in becoming a mom is already coming true. When Oaklee’s awake, I feel guilty trying to get things done. I feel like she’s too fragile to take anywhere, and I’m scared out of my mind to really do that on my own anyway…”

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.

In our third year of marriage, our first big decision was to start a family. Our second big decision was to sign for full resuscitation of our baby at 23 weeks. Our third big decision was to get our baby home as soon as possible, come hell or high water. And then all along the way, we had the tiny, daily decisions too. We chose to find humor in some of our worst moments. We chose to celebrate small victories. We chose to focus on goals instead of obstacles.

I can’t tell you there’s a special formula to make your marriage flourish through even the worst of times – I wouldn’t even say ours flourished – but I can tell you that when you have to go through something big, something scary, something that doesn’t even seem real together, you’ll be the better for choosing daily to love your spouse.

So on the 13th, Kevin took the day off work and we ventured out to celebrate with a morning date between our versions of Oaklee’s “Care Times”. We grabbed coffee and blueberry donuts and headed to the beach just to see Lake Michigan one time in our crazy 2017.

I had imagined that on this day I would be nearing the end of my pregnancy. I’d imagined my husband, my almost 9 month pregnant belly and me snuggling on our couch and dreaming of the changes we would be facing when baby girl made her appearance any day now.

Instead, our days were that of new parents adjusting to having brought their first child home. Still, it wasn’t the go-with-the-flow, try-everything-until-something-works process I thought even that phase would be. We approached Oaklee’s schedule and care with rigidity. For crying out loud, I already mentioned we essentially still did Care Times. Every three hours I’d pump, we’d change Oaklee’s diaper and we’d give her a bottle – one that was explicitly measured to the exact amount we’d been told she should be taking. I think we were one step away from taking her temperature at our Care Times.

Our adjustment to home life was nowhere near fluid. We’d lived so long in a world where statistics dictated the care of our baby that we didn’t know how to care for our baby without them.

But still, this day was so sweet. We celebrated three years of marriage, and we got to do so with the person we both love most. We could have still been pregnant, sure, but also could have still been spending our days in the NICU or, worse, we could have still been mourning a loss.

Oh September… you’re sweet.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 6lb 9oz (9.5.17)
Gestational age: 38 weeks, 4 days
Actual age: 10 weeks, 6 days
Days in the hospital: 69
Days home: 8
Appointments since home: 2

Book Review: The Strange Case of Dr. Couney: How a European Showman Saved Thousands of American Babies

The Strange Case of Dr. Couney is about Dawn Raffel’s search to uncover the truths of Dr. Martin Couney and the things she learns about his story along the way. Several claims have been made on what Dr. Couney did and didn’t do – whether he was even an actual doctor or not – but little evidence supports most of those claims. What is known by fact is that he saved thousands of American preemies and low birth weight newborns in his infant incubator exhibits, where the babies were displayed to the public, for more than three decades in the early 1900s, most famously at Coney Island in New York City.

Because of my already scroll-like to-read list, I get really anxious when someone gives me a book recommendation. However, when I was tipped off that this book would be coming out on July 31, I checked every day for a pre-order deal and then lasted approximately two weeks after it came out, checking every day for a sale until I broke down and just bought it for $18. I never spend that much on a book, but…

Book 28:
The Strange Case of Dr. Couney: How a Mysterious European Showman Saved Thousands of American Babies
by Dawn Raffel

Genre:
Medical Professional Biography, History

Published:
July 2018

Synopsis According to Mandi:
Without spoilers, The Strange Case of Dr. Couney is about Dawn Raffel’s search to uncover the truths of Dr. Martin Couney and the things she learns about his story along the way. Several claims have been made on what Dr. Couney did and didn’t do – whether he was even an actual doctor or not – but little evidence supports most of those claims. What is known by fact is that he saved thousands of American preemies and low birth weight newborns in his infant incubator exhibits, where the babies were displayed to the public, for more than three decades in the early 1900s, most famously at Coney Island in New York City.

Favorite Quote(s):

When is it cruel to force a heart to beat? That question continues to haunt the beginning of life – as well as its end. What do we do with the means to keep someone alive in a near-vegetative state? To what extent does it matter if that someone is an infant or a nonagenarian? Technology, from life support to genetic testing, and editing, keeps making the choices harder. Which lives are worth saving? Who decides?” 

-Dawn Raffel

Awards (based upon my brief research):
None yet.

Pages:
304

My Overall Rating:
4 – If someone had said, “I’ve got a great Medical Professional Biography I think you should read,” I would have never expected to take them up on it. However, preemies, isolettes and the advancement of early NICU technology… I knew I had to read this one. I thought it might be an emotional read for me, and at times it was, but things were very different in the early 1900s, creating a distinct separation between myself and the mothers of preemies mentioned in the book. I learned so much from reading this book and was so impressed by Dr. Couney’s work, but what I loved most about it is that it reads like a mystery novel. I had to remind myself several times that this is a true story. I kept wanting to read more because I wanted to uncover the answers with the author.

Regardless of your experience with preemies, isolettes and NICU technology, I would still recommend this book. If you like mystery and history, this one can take you on quite the ride. I might just have become a bit of a Couney Buff myself after this book…

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…

9.6.17

“Love finally snuggling my girl at home!”

Oh, how rough our first night was. Every little grunt or wiggle had us lurching to the end of our bed to check on Oaklee in her pack and play. She was used to noises and light 24/7 and we were asking her to sleep in the largely silent darkness. She didn’t sleep well, so neither did we. But still, we woke up, snuggled our baby, drank our coffee and were a family… in our own home.

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…

To the parents of the baby who was rushed away into surgery as we spent our last day in the NICU,

Do you know that I still think of you? I still picture you. I still pray for you. I still cry for you.

I don’t even know your names, but I watched your baby’s story unfold from the isolette across Area 11.

Dad, it was you who made me realize what my own husband went through on the day our daughter was born. I saw you come in, following the isolette that held your tiny baby and was surrounded by a team in scrubs who were working quickly to run every test, check every level, plug in every cord and secure every tube. I watched you stand back, helpless, stoic, the fate of your new baby in the hands of people you’d just met in your panic-stricken state. I heard the nurse who told you you could hold your baby’s hand, and saw you uncertainly reach your arm through the door to touch your child for your first time. I felt, all over again, what this day probably felt like to you, the horrid excitement of welcoming a baby too soon.

Mom, in you, I realized how special the innate dedication truly is that comes immediately when you join the NICU mommy tribe. They wheeled you over in your hospital bed to show you the life you’d given. You cried. I cried. I remembered that day in my own story. Your visit was far too short, but they took you away for your own recovery. Before you came back, you’d pumped, committing to giving the very best to the baby you didn’t carry for 9 months and only briefly saw. You continued pumping for weeks, doing skin-to-skin, visiting daily. You poured all your love into that little girl and then you poured more.

The night before Oaklee was discharged, my husband and I stayed late, wanting to be sure she was succeeding at what she needed to do to come home. We watched the nurses exchange glances and words about your daughter and knew something was wrong. We didn’t know your baby would never come home.

We came back the next morning with grins that stretched ear-to-ear. Our girl had done what it took to get the ok to come home. She was being discharged, while your daughter was being discharged to a destination only death will bring you to. With several teams of doctors, surgeons and nurses in the room, the energy was vast and vastly somber. We watched as, again, you stood back helpless, your daughter’s isolette surrounded by people more qualified than you to give her what was best for her. Our nurse apologized to us that our discharge was taking so long, but we didn’t care. We knew we’d take our baby home, we just wanted the same for you.

On September 5, though, we took Oaklee home, and God took your daughter home, and for that, I am so, so sorry. My heart will forever ache for you. I watched you live my greatest fear on the greatest day of my life.

Your daughter is whole in heaven, and you’re broken on earth, missing a part of your heart, the life you gave. I will never think that’s fair.

I still think of you. I still picture you. I still pray for you. I still cry for you.

And I hope you’ve found even a glimpse of the healing I was so afraid I’d never find if my story followed the lines of yours.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 6lb 9oz (9.5.17)
Gestational age: 37 weeks, 4 days
Actual age: 9 weeks, 6 days
Days in the hospital: 69
Days home: 1

Homecoming

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…

9.5.17

“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.

Cord Free

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.

Going Home

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

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.

9.1.17

“All year long, we’d planned and hoped this September would be special, and yes, now we know it will be. It’s our hope that this next week will be our final week at the hospital and that we’ll turn the page on a chapter of our story we never wanted to write. We’re so blessed this chapter has a happy ending, and so ready for the joys and struggles of the next chapter. Praise be to God for the blessing that is Oaklee Ann Grasmeyer.”

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.

Our common obstacles included:

1 – Oakles’s respiratory rate still occasionally being too high (tachypnea) and, therefore, it being unsafe to offer bottle or breast.

2 – Nurses improperly handling the conflicting Care Times of Oaklee and the baby(ies) she was paired with and, therefore, choosing to give her feeds via gavage so they didn’t have to take the time to give two babies their bottles.

3 – Breastfeeding.

As I previously mentioned, Kevin and I had begun to strategically plan, prepare and build Team Oaklee to get her home. That meant we had to find our way around these obstacles.

Our solutions included:

1 – Though there was not much we could do if Oaklee were truly tachypnic, we quickly learned the range considered tachypnic was subject to opinion. Therefore, we began monitoring what each nurse considered tachypnic and pushing back when their opinions didn’t align, asking them to re-check Oaklee or letting them know several other nurses had let her feed at that particular respiratory rate. We no longer silently accepted what we were told when it was holding Oaklee back.

2 – You can bet your life we raised a colossal stink when we learned nurses were gavaging Oaklee for entire shifts because her Care Time aligned with the baby’s she was paired with. We considered this highly unprofessional and distinct evidence she was being held back by being in the hospital and not at home. If Oaklee were home, we would be doing whatever we could to help her succeed, not doing whatever made our shift easier. Immediately after our complaint, there was a short list of nurses Oaklee would never have again and she was instead paired with a set of twins whose Care Times differed and whose mother we would later befriend.

3 – Despite Oaklee’s start, I still had every intention of breastfeeding and not exclusively pumping. However, breastfeeding is incredibly challenging for a tiny baby who’s had to do little to no work in order to feed for the first several weeks of life. Therefore, Oaklee’s chances of taking 80% of a feed at breast were slim. The few times we tried breastfeeding in the hospital, she would take maybe 25% of a feed, and the nurse would gavage 75% of a feed once Oaklee got too tired. Unfortunately, our way around this obstacle was to not breastfeed once Oaklee was getting close to the 80% mark. Though this decision was not easy, my intention to breastfeed was also something we could not afford to hold us back. I knew that many, if not most, mothers who bring preemies home never get them to switch from bottle to breast. Because exclusively pumping is no simple task, this often means many preemies do not have the opportunity to be on breastmilk for very long. Our Plan B, here, was the overabundance of breastmilk I was already storing up, but Plan A was still very much to make that switch from bottle to breast at home, sans hospital resources that were currently at our fingertips.

Last, a workaround all of our obstacles included our agreement to learn how to place a NG tube ourselves at 38 weeks. In the NICU Oaklee was in, true Feeder Growers can go home at 38 weeks with a NG tube for incomplete feeds so long as two people learn how to successfully place and care for a NG tube. Until the past week, where we began our two week goal, we’d been hesitant to consider this solution. Oaklee, like every baby, screamed when a tube was being shoved up her nose and down her throat. However, we were ready to swallow our own fear and do what we needed to do to be done with this phase.

Once Oaklee made her way around these obstacles and took 80% of her feeds, she would be switched to a more natural style of feeding the NICU called “ad lib, on demand” where she could eat as much or as little as she wanted whenever she showed signs of being hungry. At that point, Oaklee would need to prove she could take 100% of her feeds in any given 6 hour window for 48 hours.

In the mean time, we did what we needed to do to get any bit closer to that 80%.

We spoke up.

We complained.

We raised our rally flags.

We will gavage.

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, 6 days
Days in the hospital: 64
Sets of visitors to see Oaklee: 49
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13