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

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

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

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