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

Day 124

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

8.27.17

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

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

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

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

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

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

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

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

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

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

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

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

2:00 pm – Mandi pumps.

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

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

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

Kangaroo Care

5:00 pm – Mandi pumps.

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

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

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

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

6:30 pm – Kevin does skin-to-skin.

NICU hobbies

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

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

8:00 pm – Mandi pumps.

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

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

10:00 pm – We prep for another day.

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

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

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

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

3 – Responding to work emails on our phones.

4 – Reading while holding Oaklee.

5 – Chatting with nurses.

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

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

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

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

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

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

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. 

Sponsor Oaklee's March of Dimes team.