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.

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

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!

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.

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

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.

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.

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. 

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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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