August 2018 – mandigrasmeyer.com

Book Review – The Color Purple

The Color Purple is about two sisters, Celie and Nettie, who hold their bond tightly despite their rough childhood and the journeys their lives take them on. Set in the early 20th century, Nettie becomes a missionary in Africa while Celie becomes child wife living in the South. This creates very different experiences and viewpoints on life for the sisters, but one thing holds true: they are loyal to their family no matter the time, distance or silence between them.

The Color Purple is a book I’d heard of but knew nothing about. I was excited when it was posed as an option for our August Book Club selection, and it quickly gained my vote. I like the idea of being “well-read”, and I don’t think you can truly do that without dipping into some of the older, more classic reads. It was a delight to borrow this one from the library and cross it off my list.

Book 27:
The Color Purple
by Alice Walker

Genre:
Epistolary novel, Fiction, Domestic Fiction

Published:
1982

Synopsis According to Mandi:
Without spoilers, The Color Purple is about two sisters, Celie and Nettie, who hold their bond tightly despite their rough childhood and the journeys their lives take them on. Set in the early 20th century, Nettie becomes a missionary in Africa while Celie becomes child wife living in the South. This creates very different experiences and viewpoints on life for the sisters, but one thing holds true: they are loyal to their family no matter the time, distance or silence between them.

Favorite Quote(s):

“You ast yourself one question, it lead to fifteen. I start to wonder why us need love. Why us suffer. Why us black. Why us men and women. Where do children really come from. It didn’t take long to realize I didn’t hardly know nothing. And that if you ast yourself why you black or a man or a woman or a bush it don’t mean nothing if you don’t ast why you here, period.

I think us here to wonder, myself. To wonder. To ast. And that in wondering about the big things and asting bout the big things, you learn about the little ones, almost by accident. But you never know nothing more about the big things than you start out with. The more I wonder, he say, the more I love.”

-Alice Walker, The Color Purple

“I think it pisses God off if you walk by the color purple in a field somewhere and don’t notice it.”

-Alice Walker, The Color Purple

Awards (based upon my brief research):
Pulitzer Prize for Fiction (1983)
National Book Award for Fiction (1983)

Pages:
288

My Overall Rating:
3.5 – I think somewhere deep in the colloquial language there is a great story here. I see why this book is so highly praised – the overall story is one we all need to hear – it is just one that was a definite struggle for me. I’ll admit, I have a hard time reading books written in colloquial language in the first place, but this one also lacked standard grammar, and therefore, I struggled even more to follow. There were points I had to read and reread before really understanding who that part was even about.

Day 124

Our pregnancy had run amuck 124 days before August 27 on April 6. Since then, we’d seen bedrest at home, bedrest at the hospital, the birth of our incredibly premature baby, and our inauguration to the NICU world. So what did our lives look like in this NICU stage? It’s hard to really capture what our “average schedule” was, because nothing about navigating the NICU stage was average or scheduled.

8.27.17

“59 days old today, and there’s a light at the end of the tunnel… We asked the doctor for a realistic goal of when she could come home. She said she doesn’t think two weeks is unrealistic. It would be so sweet to have her home by our anniversary (September 13).”

The 27th was a Sunday. Kevin and I had gotten up to hospital mid-morning with fire in our eyes. We’d set a goal, personally, to have Oaklee home by the time she reached the gestational age of 38 weeks. That would have been September 9. We’d been living this life far too long and, deep down, believed we may have been approaching the stage where Oaklee would flourish faster at home, under the 24-hour care of her own parents, than at the hospital, under the systematic care of doctors and nurses.

We caught Dr. D, the doctor who gave us our very first neonatal consult, on her rounds and asked her what a realistic goal would be of when Oaklee could come home. She said two weeks, aligning with our goal, putting the fire in our bellies and changing our mindsets. We would no longer simply visit Oaklee. We would strategically plan, prepare and build Team Oaklee to get her home.

But before I get ahead of myself, let’s go back.

Still, I will do my best to give you a glimpse into what a day might have looked like for us in this time:

2:00 am – Mandi gets up to pump and goes back to bed.

6:00 am – Mandi gets up, showers, eats breakfast, gets ready for work and pumps.

7:00 am – Kevin gets up, showers, eats breakfast and gets ready for work.

7:55 am – Mandi walks to work. Kevin drives to work.

11:00 am – Mandi leaves work, walks home, pumps and eats lunch.

12:00 pm – Mandi either heads up to the hospital to be with Oaklee or runs errands/meal preps/does laundry/etc. In an effort to both keep our lives on track and keep me sane by not spending every possible moment at the hospital, generally twice a week I would wait until Kevin got home before going up to the hospital. While waiting, I would work on Oaklee’s nursery, go grocery shopping, cook several meals to be stored and reheated at the hospital for dinner, do laundry, mow the lawn… whatever needed to be done at home/away from the hospital.

2:00 pm – Mandi pumps.

3:00 pm – If at the hospital, Mandi assists with Oaklee’s “Care Time” (changing her diaper, checking her vitals and feeding her).

3:30 pm – Mandi does Kangaroo Care/skin-to-skin.

I attribute much of Oaklee’s progress to the love and care Kevin and I gave her. She needed God’s healing hand. She needed the medical intervention and the care of doctors and nurses. But she also needed love and bonding. I am whole-heartedly convinced that without any one of those three, we would not be telling the success story we’re able to tell. We not only visited Oaklee every day in the hospital, but we also talked to her, touched her, cared for her and at least one of us, if not both, did skin-to-skin.

5:00 pm – Mandi pumps.

5:45 pm – Kevin joins Mandi at the hospital. We heat up our dinner and eat, typically in the cafeteria of the children’s hospital.

Our most frequent meal was probably quiche as it was an easy, hearty meal, though I don’t know that we’ve had it since our hospital days given how frequently we ate it then. We did still receive many meals from friends and family, which was a major help during this time. It quite often felt as though food was a burden. Needing to slow down to go grocery shopping, meal prep and even eat the food took time away from Oaklee.

We also received several gift cards to the restaurants in the food court. This too, was an amazing blessing, and I would highly recommend gifting both restaurant gift cards and gas gift cards to someone in our position (and thank you immensely to everyone who did!). We generally saved our gift cards for when we were either in a pinch for food or just wanted to treat ourselves and not eat reheated quiche.

6:00 pm – Kevin and Mandi assist with Oaklee’s Care Time.

6:30 pm – Kevin does skin-to-skin.

7:30 pm – Typically, if we had guests, they came in the evening after the nurses’ shift change. They would often stay for an hour or so, largely just looking at Oaklee and chatting with us.

During her hospital stay, holding Oaklee was a big deal. Up until she was on a nasal cannula, getting her out of her isolette required the assistance of a nurse. Therefore, we didn’t let anyone else hold Oaklee until she was stable enough to be passed around a bit. At that point, we allowed only our parents to hold her. When you only get one to two hours to hold your baby per day, it’s hard to give that time to someone else – especially when you value so highly the bond created when you hold/touch your child.

8:00 pm – Mandi pumps.

9:00 pm – Any guests leave. Kevin and Mandi assist in Oaklee’s Care Time (which includes taking her weight at this particular Care Time).

9:30 pm – Kevin and Mandi say goodbye, make their way to the parking garage where we either each get into our cars (if I came up before Kevin got out of work) or we get into Kevin’s car (if we drove up together) and drive home.

10:00 pm – We prep for another day.

11:00 pm – Mandi pumps and we go to bed.

Confined to one room in the NICU if we wanted to spend time with our baby, some Area 11 hobbies we acquired were:

1 – Staring at Oaklee’s monitor, watching her oxygen saturations and respiratory rate go up and down.

2 – Scrolling through Facebook, Instagram, articles, etc. on our phones.

3 – Responding to work emails on our phones.

4 – Reading while holding Oaklee.

5 – Chatting with nurses.

Friends, some of my best pieces of advice to give you when approaching someone who has a child in the NICU long term would be these:

Give them space. I don’t mean to say don’t talk to them or visit. I mean, give them the space to do what they need to do or be who they need to be. Don’t assume you know what’s best for them. Open up your home, your time, and yourself and be flexible with the ways they may or may not utilize you. Instead of saying, “I’m going to drop off a dinner for you on Tuesday at 5:00,” say, “Is there anything you might need? I could mow your lawn, grab you some groceries, go to your house and do your laundry or provide a dinner,” and be ok if they say no. Your offer did not go unheard.

Also, tactfully ask lots of questions and listen to lots of answers. Don’t do your own research and assume you have a good handle on what’s going on. Let them send you notes on their experiences and what they’re learning along the way. If they share a term or concept you’re unfamiliar with, circle back and ask them to explain it. If you don’t feel they’re sharing enough with you, remind them that you’re willing to be a listening ear and that you care before asking detail-oriented questions.

Lastly, please keep in mind, while most NICU journeys share common themes, no two NICU experiences are alike. Though Kevin and I have been through the NICU stage of our journey, even we cannot turn to our next friend or family member who finds their baby in the NICU and know exactly what they’re experiencing. Instead, we’ll just pray none of our friends or family members find themselves there in the first place.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower

In the stats:
Birth weight: 2lb, 12oz
Last known weight: Just over 6 lb (8/27/17)
Gestational Age: 36 weeks, 1 day
Days in the hospital: 60
Sets of visitors to see Oaklee: 47
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13

Book Review – What Alice Forgot

What Alice Forgot is about a woman who comes to on the gym floor and discovers she’s 10 years older, her marriage is in shambles, and she’s forgotten everything that’s happened in the past decade, including her children. Over the course of the story, she re-discovers who she now is and who she once was and combines these two people to decide who she really wants to be and what she really wants out of life.

I bought book 26 for $1 at a Used Book Sale because I recognized the author’s name and knew it must at least be decent. It also happened to be on my “To Read” list from 2015 on my library account. I’m glad three years later I could finally cross this one off…

Book 26:
What Alice Forgot
by Liane Moriarity

Genre:
Fiction, Domestic Fiction

Published:
2009

Synopsis According to Mandi:
Without spoilers, What Alice Forgot is about a woman who comes to on the gym floor and discovers she’s 10 years older, her marriage is in shambles, and she’s forgotten everything that’s happened in the past decade, including her children. Over the course of the story, she re-discovers who she now is and who she once was and combines these two people to decide who she really wants to be and what she really wants out of life.

Favorite Quote(s):

“They would think she was savoring the taste (blueberries, cinnamon, cream – excellent), but she was actually savoring the whole morning, trying to catch it, pin it down, keep it safe before all those precious moments became yet another memory.”

-Liane Moriarty, What Alice Forgot

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

Pages:
544

My Overall Rating:
4 – 2015 Mandi would have given this 5 stars because it exactly fits the genre I was stuck in at that time. Things have changed, but still, 2018 Mandi was pleasantly surprised with Moriarty’s work on this one. I’m not generally a fan of three coinciding plots, which this book had, but each plot tugged at my heart strings, kept me engaged, and, somehow, gave me a better understanding of the overall themes of the book – loss, love and redemption. A feel good read, this one did feel cheesy at times but, given the genre, I do think that’s to be expected. I truly enjoyed this book.

Hitting a Wall

55 days old and I finally hit a wall today. I’m exhausted – mentally, physically, emotionally – exhausted. It was the first day I had the thought that maybe it would be better if I weren’t [in the NICU with Oaklee] right now. I just need time to re-energize. I can’t handle the noise, the busyness, the stress or the reliance on the opinions of others anymore.

To be completely transparent, I think 2017 Mandi explained these days best…

8.23.17

“55 days old and I finally hit a wall today. I’m exhausted – mentally, physically, emotionally – exhausted. It was the first day I had the thought that maybe it would be better if I weren’t [in the NICU with Oaklee] right now. I just need time to re-energize. I can’t handle the noise, the busyness, the stress or the reliance on the opinions of others anymore.

For 55 days, someone else has made every decision revolving around my baby and I’ve yet to have a quiet moment, just me and her. It’s a much crueler form of punishment than I ever anticipated.

Today, the opinion was that Oaklee’s respiratory rate was too high for her to feed. Yet yesterday it was just as high, she fed and did great. The personal opinions of nurses, at this point, are keeping Oaklee from making progress.

We were told this last step can feel excruciatingly drawn out. That is accurate… especially with nurses like today’s.

It’s one thing to take your baby home and get little helpful (or unhelpful) bits of advice from a friend or family member – that would grind my gears too – but we’re in a situation where the other opinion rules. What the nurses say goes.

I don’t get to be a mom. I don’t even get to feed my own baby… or dress her or rock her to sleep or take her outside…

This is a miserable stage. It will never ‘be a blur’ like everyone says it will be someday…”

8.24.17

“So much of our lives are just consumed by fogs right now. I don’t like just trying to get through. We should be happily celebrating our baby, not wishing for tomorrow again and again. We should want the days to last longer, not end faster.

This is a painful stage, and this particular portion is so hard. It’s like running a marathon and deciding to crawl the last mile on pavement, finish line in sight.

I think I’m going to lose it.

I’m afraid I already have.”

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower

In the stats:
Birth weight: 2lb, 12oz
Last known weight: Almost 5 lb (8/13/17)
Gestational Age: 35 weeks, 4 days
Days in the hospital: 56
Sets of visitors to see Oaklee: 45
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13

Feeder Grower

As I previously mentioned, we were told the feeding part of the journey can be excruciating long. On this first day of respiratory-support-free-Oaklee, there was much to celebrate. She was breathing on her own AND she took her first approved, all parties in the know and on board, bottle.

8.21.17

“We’re hopeful she’s a quick learner, but trying not to be overly optimistic, too. She’s in a stage where she can feed if she’s showing cues, but so far something has been off at most care times – either her respiratory rate has been too high or she hasn’t show enough cues…”

On the 21st, our girl became a true “feeder grower”. Nasal cannula-less, Oaklee was breathing 100% on her own. It took her lungs 53 days and extensive intervention to get to this point, but they got there. We will forever rejoice over this incredible feat.

Now, all that was truly left for her to do, was learn how to feed and grow before we could take her home!

I don’t remember how she did with that bottle. I only remember the uncomfortable feeling of a nurse asking if we wanted her to take a picture of us giving Oaklee her first bottle. This was not her first bottle. There was that one… back on the 17th that your co-worker tossed me to the wolves with, prematurely asking Oaklee to feed, giving me no guidance and, ultimately, setting us up for failure.

This time we were told how to hold Oaklee when giving bottles, what to watch for, how to hold the bottle, etc. It was nothing like I’d practiced on my baby dolls as a little girl, but it was progress. She could now feed whenever she showed her cues at care times, and we were approved to be the ones to do it.

Feed.

Grow.

Come home please.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower

In the stats:
Birth weight: 2lb, 12oz
Last known weight: Almost 5 lb (8/13/17)
Gestational Age: 35 weeks, 2 days
Days in the hospital: 54
Sets of visitors to see Oaklee: 44
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13

Rollercoaster Two

I gave Oaklee her very first bottle. I did it just like I’d practiced with my baby dolls 25 years ago. She took half of it, which was great for a baby whose food has always just magically appeared in her belly. But over the course of the next couple of days, we would learn Oaklee had struggled with that first bottle. They put her back on the full gavage road and kept asking us to be there at certain times so we could chat with Occupational Therapy (OT) about feedings before being given the green light to feed again.

8.17.17

“49 days old and Oaklee took her first bottle today. Well… she took half of a bottle, but that’s better than we expected and it’s certainly better than not trying!”

Nine days CPAP-less, Oaklee finally hit all of her marks to try feeding. She woke up before her usual feeding time (indicating she may be hungry as she slept more often than not), took her pacifier (indicating her natural instinct to suck when hungry) and, what was huge, her respiratory rate was within a reasonable range.

I’d previously asked a nurse to note on Oaklee’s chart that I wanted to try breastfeeding at her first feeding. In an ideal situation, Oaklee’s first feeding wouldn’t come from a bottle… or from a gavage or compressed or from an IV, but we were far past our abilities to skip those. Then on the 17th, Oaklee’s older, male nurse walked over to her isolette area where I was holding her and plopped a bottle on the counter without saying anything.

Apparently, this nurse had missed my note. However, I was not comfortable breastfeeding for my first time ever in front of an old, male nurse anyway. To be honest, I wasn’t even certain the bottle was meant for Oaklee since he didn’t say anything to me.

The bottle sat for 10 minutes before I asked, “Am I supposed to give that to her?”

He responded with a nonchalant, “Yes.”

I grabbed the bottle and looked at my baby with hesitation. I’d been practicing giving babies bottles since I was old enough to pick up a baby doll. I’d babysat hundreds of times. I volunteered in our church’s nursery for years. But when I looked at my tiny, premature baby who was 49 days old and had never even seen a bottle, I questioned whether there was anything special I was meant to do.

We’d been warned of the dangers of improper bottle feeding (which most often meant feeding while the baby’s tachypnic – the very reason Oaklee had been off the CPAP for 9 days before being able to take a bottle). If she aspirated, she could contract a respiratory infection, which could set her back dramatically given her start.

I asked Oaklee’s nurse, “Is there anything special I need to know or do I just… give it to her?”

He shrugged and responded, “Yeah, just give it to her,” and continued plugging away on his computer, paying no attention to me or Oaklee.

So I gave Oaklee her very first bottle. I did it just like I’d practiced with my baby dolls 25 years ago. She took half of it, which was great for a baby whose food has always just magically appeared in her belly. But over the course of the next couple of days, we would learn Oaklee had struggled with that first bottle. They put her back on the full gavage road and kept asking us to be there at certain times so we could chat with Occupational Therapy (OT) about feedings before being given the green light to feed again.

This is when we went from sick of being in the hospital to bloody pissed off that we could not take our baby home.

I had asked my nurse if there were anything special I was supposed to do. His answer was no, and then every other nurse I had afterward told me I had to wait until we chatted with OT to learn how to give a bottle to a preemie before we could try again. Not only was this a setback for Oaklee, but the nurse set me up to be the instigator of the setback by not appropriately equipping me to do the task at hand. Had I majorly messed up that bottle, Oaklee could have been intubated again on my account… again.

So for the next couple of days, I showed up at Oaklee’s isolette at nurse-appointed times, coming earlier or staying later than normal, being promised OT had a specific time they were planning on meeting with Oaklee and me, yet for days, they did not show.

Rollercoaster two, the feeding battle, was off to an incredibly slow start, and we were all but belligerent with the process.

We realized quickly the right hand often did not know what the left hand was doing. There were technicalities some nurses treated with high regard, while others flippantly blew them off. Both my husband and myself are not quick to complain, but 84 days deep in the hospital world, it felt like we were making a stop each night to chat with the Charge Nurse.

“Please give us this nurse again, please don’t let this nurse have Oaklee again, this nurse said Oaklee could wear clothes, this nurse said she couldn’t, this nurse said she could feed, this nurse said she couldn’t, this nurse starts Oaklee’s Care Times a half hour late…”

It was our 50th day of parenthood and we had already learned, by substantial means, that we needed to be advocates for our child who could not speak for herself.

Frankly, Rollercoaster Two, and all the baggage that came with it, was a bitch.

On the 19th, I wrote,

“All-in-all, we’re sick of being here… By the time we take her home, she’ll be months old. A part of me feels like these first months are being stolen from us, like we’re missing out on things because she’s not at home, like these first couple of months don’t even count, except they do. When we take her home, it won’t be a year until her first birthday, it’ll be more like 9 months…”

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula

In the stats:
Birth weight: 2lb, 12oz
Last known weight: Almost 5 lb (8/13/17)
Gestational Age: 34 weeks, 5 days
Days in the hospital: 50
Sets of visitors to see Oaklee: 42
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 9

Sponsor Oaklee's March of Dimes team.

Book Review – Courage to Soar

Courage to Soar is the autobiography of Simone Biles, the greatest gymnast of all time and dominator of the 2016 summer Olympics in Rio. Simone shares her story from foster care to Olympic gold medalist and everything between including the hard choices she had to make, the odds that were against her and the very normal parts of her story.

For most of my life Dominique Dawes has been my favorite gymnast. I watched her compete as a part of the Magnificent Seven in the 1996 Olympics in Atlanta when I was 6. She made me fall in love with gymnastics – she was so powerful and so graceful. No other gymnast has captivated me quite like she did… until Simone Biles. I caught wind of her when she first won World’s and started following her journey to the 2016 Olympics, shocked that any human could do what she was doing. Then, like I find with any majorly successful athlete, I needed to know her story, hence book 25.

Book 25:
Courage to Soar: A Body in Motion, A Life in Balance
by Simone Biles and Michelle Burford

Genre:
Autobiography, Biography

Published:
November 2016

Synopsis According to Mandi:
Without spoilers, Courage to Soar is the autobiography of Simone Biles, the greatest gymnast of all time and dominator of the 2016 summer Olympics in Rio. Simone shares her story from foster care to Olympic gold medalist and everything between including the hard choices she had to make, the odds that were against her and the very normal parts of her story.

Favorite Quote(s):

“I would hope I would inspire kids everywhere to know that you can do anything you put your mind to.”

-Simone Biles, Courage to Soar

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

Pages:
246

My Overall Rating:
2 – I love, love, love Simone’s story, but her writing (along with Michelle Burford’s) did not do it for me. Simone took gold in Rio in August of 2016 at age 19 and had her book out by November of 2016. It felt like a book that was both rushed and written by a 19 year old (I’m so sorry, I love you Simone!).

Book Review – The Summer Wives

The Summer Wives is about a girl, Miranda, whose single mother marries into one of the wealthiest families on Winthrop Island off the New England Coast. Like most wealthy families and most islands, the Fishers and those on Winthrop Island have their secrets. Set in multiple time periods and told from multiple viewpoints, Miranda’s story unfolds as she uncovers those secrets, learns who she can and cannot trust and falls in love. When her first summer on the island ends in a substantial bout of drama, Miranda’s forced to move on, banished from the island, and to figure out who she is before she dares to set foot back on the island 18 years later.

Every summer I like to read one extremely gossipy, chick litty, beach read – not like the sweet, fun books like My Lullaby of You, but something that stretches me, something that’s even almost a little trashy, something that I wouldn’t normally allow myself to read, but it’s summer, so… The Summer Wives. This was my July Book of the Month selection, and I knew it would be my borderline trashy summer read just based on the title.

Book 24:
The Summer Wives
by Beatriz Williams

Genre:
Domestic Fiction, Historical Fiction, Romance

Published:
July 2018

Synopsis According to Mandi:
Without spoilers, The Summer Wives is about a girl, Miranda, whose single mother marries into one of the wealthiest families on Winthrop Island off the New England Coast. Like most wealthy families and most islands, the Fishers and those on Winthrop Island have their secrets. Set in multiple time periods and told from multiple viewpoints, Miranda’s story unfolds as she uncovers those secrets, learns who she can and cannot trust and falls in love. When her first summer on the island ends in a substantial bout of drama, Miranda’s forced to move on, banished from the island, and to figure out who she is before she dares to set foot back on the island 18 years later.

Favorite Quote(s):

“Still, there’s something so beautiful about a lighthouse bathing in the light of a full moon. It breaks your heart, almost. This brave, lonely, silvery thing standing tall in the middle of a hurtling tide.”

-Beatriz Williams, The Summer Wives

Awards (based upon my brief research):
Finalist for the 2018 New England Book Award

Pages:
384

My Overall Rating:
3.5 – This book was everything I wanted in an extremely gossipy, chick litty, beach read. Though it was slightly better than I expected, I can’t say it was more than I had hoped for. I wanted a bit of a mindless, trashy read and it was certainly trashy at times, but it did require a good amount of thought as the plot progressed. In hindsight, I appreciate the depth of the story. While some parts were a bit unbelievable, I was still rooting for certain characters, which is always a good sign. I will warn, it was a tad smuttier than I’m generally comfortable with, so potential readers should beware of that. I wouldn’t recommend it to the young.

CPAP-less

Each trial off CPAP was incredibly nerve-racking on Kevin and me. Oaklee had trialled off and was successful in early July, but found herself back on just a few days later. We learned from this experience not to get overly excited when the word “trial” came up. On August 2, for example, the nurse removed her CPAP in the morning and when I made my way up to the hospital in the afternoon, I was afraid to hold her as her oxygen saturations tended to change when she was being held. Realistically, we could not call her successful off the CPAP if we could not hold her, so I knew I had to hold her in order to know if she was truly capable of breathing on her own or not. She was not that time.

But this time, we ventured down a different route. Oaklee seemed so capable, yet she wasn’t allowing herself to succeed without assistance. Therefore, our nurse suggested to the doctor we try a simple nasal cannula, giving her just a small amount of additional oxygen to rely on if need be.

8.9.17

“It’s nice to hear the language change amongst the conversations with her nurses. There’s been talks of ‘final steps’ and ‘when she goes home’. We so long to be done with this phase.”

On her 35th day with a CPAP, Oaklee trialled off for her 4th or 5th time and was largely successful. In an ideal world, she would have went from CPAP to breathing completely on her own. Actually, in an ideal world, she would have been born in September. But as we knew all too well, nothing was ideal about this journey.

While Oaklee’s respiratory support in each stage was necessary, it was also a necessary evil. She had received enough respiratory assistance and experienced enough respiratory distress to be diagnosed with Chronic Lung Disease (or bronchopulmonary dysplasia). Causes of Chronic Lung Disease include prematurity, low amounts of surfactant, oxygen use and mechanical ventilation, all of which Oaklee experienced.

In short, Oaklee’s lungs were damaged long term from the assistance they required to work at all short term.

At all times she required assistance, the nurses only gave Oaklee the minimum amount of respiratory support she needed to keep her oxygen saturations in an acceptable range. They knew the dangers of giving more support than necessary. The knew the diagnoses she had already accumulated.

A nasal cannula was a step in the right direction – the pressure put on her lungs and the invasion of her airways from the CPAP, oscillator and ventilator were a thing of the past – but still, we were not out of the woods.

In addition to the respiratory progress this transition made, it also allowed for progress in two other areas.

First, now that a CPAP was not in the way, Oaklee could begin learning to feed if she showed proper cues. Showing proper cues meant waking up around her care times, sucking her pacifier, getting fussy and any other way she could tell us she was hungry. (She also needed to keep her respiratory rate in a safe range to feed, so if her breathing was tachypnic, as it so often was, and she was showing cues, we would still not be able to offer her a bottle.)

Second, without the heavy machinery, mommy and daddy could finally, FINALLY pick up our girl without asking permission from a nurse. She’d been extrauterine for 42 days and every time I’d held my baby I had to ask someone if I could do it and if they’d help me do it. I cannot express to you the bridge we crossed relationally going from needing permission to pick up my child to just snatching her up when I wanted to.

That’s right, people, this is my child, my baby, and I can hold her when I want.

Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 4lb 2oz (8/3/17)
Gestational Age: 33 weeks, 4 days
Days in the hospital: 42
Sets of visitors to see Oaklee: 37
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 1

Sponsor Oaklee's March of Dimes team.

Sensory Overload

8.6.17

“We want to take this girl home. We want to relax on our couch, just the three of us – no beeps, no nurses, no strangers, no pumping… we just want privacy, quiet, home. Being in the hospital is hard – as a patient or as the parent of a patient… We’re ready for this phase to be over with.”

Area 11 consisted of 8 isolettes and, generally, 3-4 nurses to look after the babies who filled those isolettes. Each isolette had its own nurse’s area stocked with supplies and an ample amount of space for exactly four visitors to crowd a baby’s bedside. Each baby was tied to a monitor with wavy lines tracking his/her pulse, oxygen saturation and respiratory rate, sounding alarms when one or the other was too high or too low.

It was not uncommon for the room to hold 8 babies, 3 families, 4 nurses, 2 specialists of some kind or the other and a doctor making his/her rounds all at the same time. We’d pull cloth partitions tightly around the isolette that housed our baby and the machinery she was requiring to survive in order to give ourselves even just a tiny bit of privacy, but the cloth did not block out the noise.

Beeps. Alarms. Conversations. Someone mindlessly tapping. Alarms. Conversations. Someone scooting a chair across the room to their baby’s isolette. Someone pumping. Beeps. Conversations. Babies crying. Alarms.

I hated the noise. I hated that when I was with my baby, I wanted to be anywhere but the one place I could be with my baby. I hated that I would find reasons to leave the room she had to stay in, just to escape the noise. I hated being there. I hated that I hated being there.

I had a friend suggest I go for a walk in the hall with my baby to escape the noise. I choked on the laugh I unsuccessfully held back before reminding myself that most people just have no idea what the NICU is like. Can you go for a walk with a patient in the hall of the adult ICU? I would assume not. The NICU isn’t a cute place for cute babies who need a cute amount of care before going home. It is Intensive Care. Those wires and beeps and alarms mean something, and not something good.

So as much as I hated the noise, my world was in that room. Some days I was a soldier, bunkering down by my baby and out to win a war. Some days I was weak, leaving the room to fill up my water bottle, or go eat a snack or even to just cry in the “quiet room” at the end of the hall, just to escape the noise.

It didn’t help that we’d hardly made any progress since July 3. With each trial off CPAP failing, it felt as though Oaklee might be on a CPAP for months yet.

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

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 4lb 2oz (8/3/17)
Gestational Age: 33 weeks, 1 day
Days in the hospital: 39
Sets of visitors to see Oaklee: 36
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 32

P.S. I should also note feedings: By this date, Oaklee was receiving 38 ml of breastmilk plus Prolacta. She was in the process of being weaned from Prolacta to Human Milk Fortifier, a lesser degree of the same type of substance – one that would give her additional calories and nutrients.

Sponsor Oaklee's March of Dimes team.