Due Date

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

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

9.23.17

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

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

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

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

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

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

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

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

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

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

Eat. Gain. Grow.

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

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

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

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

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

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.

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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