But Before We Do this Again

It’s Monday, February 4, 2019 and I’m laying in my bed next to my husband at the end of a long day. Our 19-month old daughter is sleeping in her bed in the room next to ours. I’m crying, because I don’t know if I can do it again…

2.4.19

“I’m afraid I’ll never be able to say, yes, let’s do this again. I’ll never be ready. Because I don’t want to do it again. I just don’t.”

It’s Monday, February 4, 2019 and I’m laying in my bed next to my husband at the end of a long day. Our 19-month old daughter is sleeping in her bed in the room next to ours. I’m crying, because I don’t know if I can do it again.

We promised each other we wouldn’t talk about our next baby until our daughter turned two, but we both agreed I needed to find a new doctor before then. And on this day, on Monday, February 4, I made my appointment with a new doctor. 

As we reflected on a pregnancy riddled with issues – previa, abruption, premature rupture of membranes, premature birth – we began compiling the list of questions we would need to ask this new doctor, hoping she could fill the big shoes that’d been left empty when our last pregnancy went horrendously wonky. 

What are the chances those issues could happen again?

What does it look like for my body to be pregnant?

How long can I carry a baby?

What could we do differently to take precautions?

And is this even a good idea at all?

I’m crying, and I whisper, “I just wish I could close my eyes and wake up pregnant so I wouldn’t have to make the conscious decision to put my body through that again…” 

 

In the stats: 
Gestational Age: 3 weeks, 6 days

Transfused

On the 30th, the day after Oaklee was born, I spent most of my day trapped in my room on the OB Special Care Floor. In the morning, I asked my nurse to remove my IV. I was so excited to finally be rid of my shackle, but the nurse was shocked I had not yet been notified of my pending transfusion.

My hemoglobin was a 6. 12-15 is normal for women (10-14 during pregnancy), but between the pregnancy and the cesarean, I’d lost so much blood. They ordered two units of blood and asked me when I wanted to sit through the transfusion. Not realizing quite how long it was going to take, I suggested we start right away to get it over with. I wanted to be done focusing on my own medical needs so I could focus on my daughter one building away.

7.1.17

“Tonight marks my final night in the hospital after a 5 week and 2 day stay. Celebrating with fireworks, mock tails and kettle corn made it all too perfect. Such a bittersweet night as Oaklee takes my place as the patient. She’s a strong one. We love her so, so much.”

On the 30th, the day after Oaklee was born, I spent most of my day trapped in my room on the OB Special Care Floor. In the morning, I asked my nurse to remove my IV. I was so excited to finally be rid of my shackle, but the nurse was shocked I had not yet been notified of my pending transfusion.

My hemoglobin was a 6. 12-15 is normal for women (10-14 during pregnancy), but between the pregnancy and the cesarean, I’d lost so much blood. They ordered two units of blood and asked me when I wanted to sit through the transfusion. Not realizing quite how long it was going to take, I suggested we start right away to get it over with. I wanted to be done focusing on my own medical needs so I could focus on my daughter one building away.

Part way through unit one, my IV busted. While, sure, someone else’s blood was going into my veins, I panicked because someone else’s blood was dripping down my arm. I’m sure this is not true, but this was the first nurse I thought, in the moment, was unqualified. She wasn’t certain what to do about the busted IV or her panicking patient whom she’d just met for the first time that shift. My husband was over with our daughter and I hissed between my teeth into the phone, “Get. Back here.” The nurse slowed the flow of the blood, finished the unit, removed the busted IV and I faced my 7th IV start… post-partum. I was irate. After everything I’d been through, this put me over the edge.

I was disgusted. I was tired. I wanted to see my baby.

The report was that Oaklee was doing a bit better that morning. They’d bumped her down to 20-30% support on the oscillator, and the talk wasn’t revolved around whether or not she was going to survive so much as when could they give her less and less support.

After sitting six hours through my transfusion, I finally took a shower before two sets of Oaklee’s uncles and aunts came to visit. Again, we stared through the plexi-glass at her tiny, little body, her chest puffing a mile a minute from that oscillator. 2lb 12oz at birth, she was now on her way to her lowest known weight, 2lb 7oz. I watched as my husband changed his first diaper on a baby smaller than the baby dolls I played with as a child. Even this made me cry.

By the first of July, my final day as a patient, Oaklee made the switch to a conventional ventilator (see mechanical ventilator). Most parents panic if their child requires the assistance of a ventilator. We celebrated. She tolerated the switch well and, so long as she proved a vent was right for her, we would get to hold her soon.

After another aunt/uncle visit, we watched the Grand Rapids Independence Day fireworks I was counting down to from the corner room on the OB Special Care floor. We mixed virgin Moscow Mules and ate kettle corn, celebrating the end of my stay, but also not wanting to leave. Our friends were there. Our lives were there. Our baby was there.

A couple of our former nurses came in that night to say goodbye to us. Each one reminded me I did everything I could. Each one echoed every doctor we talked to along the way, telling me there was nothing I could have done differently. Deep down, I know these things are true, but throughout much of my pregnancy, it was as if my body and mind were two separate people. My body knew there was nothing I could have done differently, but my mind was so frustrated by the route my body was taking. Mentally, I could not fathom why my body allowed this to happen. It was better than that. I took good care of it. I took pride in it. And then I became pregnant and it didn’t do it right.

I will always believe my body failed me despite knowing that yes, there truly is nothing I could have done differently.

I will also always hurt a little bit when I see pictures of brand new, smiling, healthy families in the hospital – mommy, daddy, day old baby. I want that for everyone, I really do, but I also wanted it for me. Instead, I got two units of blood, another IV start, three days without a shower, two hospitals to navigate and, above the concern about my own health, the concern about the health of my brand new baby who wasn’t just kept in a different room, but a different hospital.

Still, I rejoice with those who have happy births. I want moms to be healthy and babies to be strong. I don’t ever want someone’s post-partum picture to look like mine.

Post Partum

(When talking with my husband, neither one of us knows why this picture was taken, but both of us look back at it and see how perfectly it sums up this day for us: Exhaustion. Transfusion. Pump. Unwashed hair. Phone nearby.)

In the stats: 
Days in the hospital (Mandi): 37
IV starts: 7 (14 IV pokes)

Gestational Age: 28 weeks
Days in the hospital: 3
Sets of visitors to see Oaklee: 5

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Birth Day

Dr. L made it very clear that our baby might not make it. There was nothing more they could do. Her lungs, the ones that had been constricted in her body that’d been shrink-wrapped in my waterless womb, were being put to the ultimate test 12.5 weeks short of the amount of time they needed to properly develop. They just weren’t ready.

Dr. L left us alone. We sat with the news like an elephant on our chests. It was 6:00 am. We hadn’t yet told our families we were going into delivery, let alone, that our baby had been born. We hadn’t even shared her name with a single person. And now we wondered if we were losing her.

6.29.17

“We know Oaklee has a long journey ahead, but we couldn’t be more proud of her. She’s beautiful. She’s a major blessing. She made us parents, and for that we are thrilled.”

A continuation from Trip 6.

I didn’t sit alone in recovery room number one for long before my husband found his way back to me from our baby’s shared room over in the NICU. He’d been asked to leave the room for a sterile procedure they were going to perform on our baby, the placement of an umbilical cord IV of which they could not get done.

We briefly caught up on what little bit had happened between the operating room and our next steps before Dr. L, the neonatologist working with our baby came in to give us an update that shattered us. We’d gotten to 27 weeks and 5 days. That meant we were so close to a 95% chance of survival, yet here was Dr. L telling us, with a somber look on his face, that our baby was requiring more assistance than they’d anticipated.

He said, “I’m going to be honest, we have probably 80 babies over there right now, and if she’s not the sickest baby there, she’s in the top three.”

He went on, lacking optimism, to explain our situation. Our baby had been placed on a high frequency oscillator for respiratory support at 100%. This was the maximum amount of support they could give a person through the highest level of machinery that could be involved.

And still, they were pulling out all the stops.

She was being given nitric oxide, a treatment believed to help the blood vessels in the lungs to relax and improve breathing. She was undergoing pulmonary surfactant therapy to treat respiratory distress syndrome. They’d detected a pneumothorax, a pocket of air outside her lungs, indicating a leak somewhere that may require the placement of a chest tube. She had patent ductus arteriosus (PDA), an improper blood flow through her heart… Things like jaundice and anemia weren’t even mentioned in this brief meeting, because they were meaningless in the grand scheme of things.

Dr. L made it very clear that our baby might not make it. There was nothing more they could do. Her lungs, the ones that had been constricted in her body that’d been shrink-wrapped in my waterless womb, were being put to the ultimate test 12.5 weeks short of the amount of time they needed to properly develop. They just weren’t ready.

Dr. L left us alone. We sat with the news like an elephant on our chests. It was 6:00 am. We hadn’t yet told our families we were going into delivery, let alone, that our baby had been born. We hadn’t even shared her name with a single person. And now we wondered if we were losing her.

When we thought we’d mustered up the courage to tell at least our parents, we took turns crying through phone calls, “We had our baby. She’s not doing well. Her name is Oaklee. Please tell our siblings for us. Please pray.”

Again, we found ourselves thinking about the end of a life at the beginning. With every extra day we’d fought for in the past 35, we thought we’d moved past having to think this way.

When I’d recovered enough, the nurses took the both of us, me still in my bed, over to the NICU to see her for the promised 5 minutes I would get with her before focusing on my own recovery. Dr. L shared with us, bedside, the small bit of progress Oaklee had made, noting she may be beginning to stabilize. Still, I gazed at my baby through the plexi-glass isolette, her tiny chest vibrating rapidly from the oscillator, her pulse ox glowing, her body covered with wires and sensors and I cried.

This is my greatest failure in life.

I tried so hard to stay pregnant for her, but there was just nothing I could do. I was devastated. My body hadn’t just failed me, it failed my husband and, worse, it failed Oaklee. My part was done, sure, but it wasn’t done well.

The nurses told me it was time to go, and they wheeled me back to my old room. I ordered breakfast and we began crafting the message we’d send to our families and eventually our closest friends. No words felt right. I’d wanted to send the happy text – we’re parents! But I wasn’t certain we’d even be parents much longer. I couldn’t bring myself to even acknowledge in this first announcement what we were really facing, because I didn’t want to believe it myself. Instead, I landed on the disjointed, emotionless text below. She’s born. Her name is Oaklee. Please don’t talk to us.

“Good morning everyone. While you were sleeping early this morning, Kevin and I welcomed Oaklee Ann into our family. She is currently stable, but is having a lot of difficulty breathing. Please do not share our news with others, visit or expect us to be communicating much at this point as we navigate these first few hours… Prayers would be gratefully accepted.”

Many people say the day their baby was born was the best day of their lives. Mine was the worst. The day my baby was born was the day a doctor told me they were doing everything they could to save my child… and they still might not be able to save her. No parent should ever have to hear that.

At 4:09 am, I was relieved to no longer be solely responsible for the health of our baby. At 7:09 am, I just wanted her back in my war torn womb. I would have done anything to give her a better start. I had failed. I had failed. I had failed. And in the worst way – the way that could cost someone – my own daughter – her life.

We invited our parents to come see their granddaughter that night. With both visits, the four of us huddled around her little isolette. We stared at her and talked about how small and how beautiful she was. We ignored the elephant in the room – whether she was going to make it or not, this moment was sacred. The parented had become the parent. It was our Lion King moment, in a zoo sense – not allowed to hold our baby up, we showed her off through plexi-glass.

It was day one of a journey that would either be long or short. We prayed for long.

“She’s yours, God. Save her.”

In the stats: 
Gestational Age: 27 weeks, 5 days
Days of blood: 64
Days of bedrest: 85
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 7
Days in the hospital: 35
IV starts: 6 (12 IV pokes)
Magnesium drips: 5
Trips to Labor & Delivery: 6
Sets of visitors to see Mandi: 53

Gestational Age: 27 weeks, 5 days
Days in the hospital: 1
Sets of visitors to see Oaklee: 2

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Trip 6

Though these contractions were the worst I’d experienced yet, they were nothing a big dose of mag couldn’t take care of. So there I laid, contracting, fire-hot from the mag and doing the math over and over again – I’d last eaten at 6:00 pm on Tuesday. 12 hours turned into 18 turned into 24 and finally turned into 27.5 hours before I was stabilized enough to be allowed to eat dinner. I’d hoped this meant I had survived another L&D visit on contraband fruit snacks and slushies and I would be sent back up to my room in OB Special Care, but they wanted to keep me just a bit longer to confirm things were ok.

My mind at ease, having gotten past contractions, eaten and cooled after the rush of mag, I told my husband we should try to get some sleep. We’d cancelled our baby shower, all we needed to focus on was having a better tomorrow.

6.29.17

“It’s been a long 48 hours…”

Wednesday was a day I was looking forward to. Our small group was coming to cram into the little family room down the hall and throw us a baby shower, but at 2:00 am, I made another middle of the night call to my husband. I was experiencing contractions that sent me straight down to the Labor & Delivery floor.

Though these contractions were the worst I’d experienced yet, they were nothing a big dose of mag couldn’t take care of. So there I laid again, contracting, fire-hot from the mag and doing the math over and over again – I’d last eaten at 6:00 pm on Tuesday. 12 hours turned into 18 turned into 24 and finally turned into 27.5 hours before I was stabilized enough to be allowed to eat dinner. I’d hoped this meant I had survived another L&D visit on contraband fruit snacks and slushies and I would be sent back up to my room in OB Special Care, but they wanted to keep me just a bit longer to confirm things were ok.

My mind at ease, having gotten past contractions, eaten and cooled after the rush of mag, I told my husband we should try to get some sleep. We’d cancelled our baby shower, all we needed to focus on was having a better tomorrow.

But our tomorrow began when the nurse nudged me awake at 1:30 am, asking me to lay on my side. I knew exactly what this meant. My baby was tachy.

My contractions were still present, and with each one, my baby’s tachycardia was pausing for decelerations. Dr. W, the same resident who admitted us 35 days earlier, came in and performed a speculum that revealed (though he didn’t tell us at the time) the umbilical cord had slipped and was being squeezed with each contraction. He left the room to get the attending physician, Dr. M, while my nurse hooked me up to another round of mag. This was, for us, the sign. You don’t do two rounds of magnesium in Labor & Delivery if you’re not delivering. This one was not to ward off contractions. It was for neuroprotection for the baby who was going to be born today.

Shortly after, Dr. M came into the room with Dr. W. He explained our situation saying, “There’s a fine line between when it’s best for baby to stay in and when it’s best for baby to come out. I think we’ve crossed that line, so if it’s alright with you, I think we’ll move toward delivery now.” I trusted Dr. M so much in that moment that if he’d told me he thought it was best for me and Kevin to invest in an Airbus A380 Superjumbo Jet, I think I would have started looking for a way to make that happen.

I nodded my head, agreeing to move forward with the delivery. He encouraged us, saying he felt we had time to not rush down the hall to an operating room, cutting me open however they could to get the baby out as fast as possible, but that we could do this as if we were planning it. And then everyone turned and left the room.

I looked at my husband. We were silent for a minute. And then I said, “So, June 29. I wish it were an even number.”

We then moved into a conversation I never quite imagined. As I choked back tears, I made the switch from panic to peace, saying to my stoic husband, “We’re in the best place possible right now for this. We’re going to be ok,” trying to convince him and, oddly, believing my own words.

When the nurse returned to further prepare us, telling Kevin what he would be doing and getting me ready to go to the operating room, I turned one last time to my husband, told him he better be praying and asked him to give me a kiss. And then they wheeled me out of the room, while I prayed, silently, over and over again, the only five words that came to mind.

“She’s yours, God. Save her.”

Just down the hall, we turned into a pristine operating room with probably 15 uniformly dressed people buzzing about, bringing this from here to there, prepping this, moving this… It was so clean and bright, you might have convinced me it was heaven had I not been going through hell.

I moved over to the operating table where they had me sit first to receive my spinal. A nurse – most likely one who’d done this hundreds of times, seen hundreds of overwhelmed moms about to undergo the knife, and even hundreds too soon – placed her hands on my shoulders and looked me in the eyes, captivating my attention away from the too bright and too busy room, and explained to me what was about to happen. To this day, I remember two things about this nurse: her eyes and the fact that I just wanted to cling to her and cry despite having just met.

I hunched over as they began first with a small shot of lidocaine and then with the large needle that was my spinal. My leg involuntarily jolted. Having read up on spinals, I had a flash of fear that I might have just been paralyzed, before going back to focusing on the task at hand.

They turned my body and laid me back onto the operating table, positioning my arms in a T, pulling a curtain across my chest and explaining, “You’ll feel pressure and some tugging, but you won’t feel pain…” As they continued, they also put the knife to my flesh and I was instantly inwardly panicked over why I could feel so much. I questioned whether the spinal had even set in and if I should say something before realizing they’d already made the entire cut.

My husband entered the room in scrubs and sat by my head next to the anesthesiologist, the curtain across my chest blocking our view from the unconventional birth of our baby.

Dr. M sat with Dr. W as he worked – tugging, pushing, pulling – to get our baby out, my body swaying back and forth and, for the first time this pregnancy, frigid. In a matter of minutes, the nurses cheered out in unison the current time. Baby girl was out. She was immediately handed over to the waiting neonatal team who immediately intubated her. They allowed my husband to cut what little bit they’d left of the umbilical cord as a sweet gesture. He watched as they took measurements, cleaned her up a bit and got her ready to make the run to her next destination, the Neonatal Intensive Care Unit (NICU).

My view having been blocked by the many people involved in finishing up my surgery and saving my baby’s life, the neonatal nurses stopped by my head with my baby on their way out, showing her to me for the first time. I squeezed the words, “Hi baby girl…” out of my throat before tearing up as the tiniest baby – my baby – looked at me. I gave her a kiss, and they took her away, my husband following as we had agreed he would do.

Dr. M and Dr. W continued to work on me, removing the placenta, the large cysts on my ovaries that had grown throughout my pregnancy and the large hematoma I’d accumulated. It was as if, in that brief surgery, they were giving me my body back. For 27 weeks and 5 days, my body served solely as God’s incubator for this tiny, little girl.

Having no clue what was happening on the other side of the curtain or in the hospital next door with my baby, I talked and joked around with the anesthesiologist as they closed me up, voicing their optimism as to how their part in the process had gone. When the nurses began wheeling me out of the operating room, Dr. M placed his hand on my shoulder and said, “I think this is where we part ways. I want you to know I’ll be thinking about you.” And I often still think about him, too. I can only hope the next generation of doctors are as genuinely caring as Dr. M was.

The nurses brought me into recovery room number one where I sat alone for a while, occasionally being asked to wiggle the toes I could not yet wiggle. I didn’t sit there in fear. I wasn’t worrying. I wasn’t happy my baby had just been born. I wasn’t anything.

My part was done. My body was mine. My baby was God’s.

In the stats: 
Gestational Age: 27 weeks, 5 days
Days of blood: 64
Days of bedrest: 85
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 7
Days in the hospital: 35
IV starts: 6 (12 IV pokes)
Magnesium drips: 5
Trips to Labor & Delivery: 6
Sets of visitors to see Mandi: 53

Sponsor Oaklee's March of Dimes team.

Day 83

My 83rd day of bedrest (June 27, 2017) was no different than the others but, as we were increasingly suspecting, life would be significantly changing again for us soon. So what did it look like then? What had I been doing for the 33 days I’d been in the hospital? Below, you’ll again find a loose schedule of my days, some notes that may help clarify how we made things work during this time and some tips for approaching people in our situation.

My 83rd day of bedrest (June 27, 2017) was no different than the others but, as we were increasingly suspecting, life would be significantly changing again for us soon. So what did it look like then? What had I been doing for the 33 days I’d been in the hospital? Below, you’ll again find a loose schedule of my days, some notes that may help clarify how we made things work during this time and some tips for approaching people in our situation.

My typical schedule, on a good day, looked something like this:

5:00-6:00 am – Attending Physician/Resident’s rounds, IV flush, vitals, pills, attempts to sleep more.

7:45 am – “Officially get up”, call in my breakfast order, get dressed, brush my teeth, put on makeup and return to my bed. I noticed a lot of women on the OB Special Care floor wore hospital gowns and didn’t do their hair or makeup. While, really, it seems there is no point, I felt a lot better about myself on the days I was wearing actual clothes and had some mascara on.

8:00 am – Begin work. I remained working remotely for both part time jobs I held at the time. This very much kept me sane. It gave me purpose other than trying to remain pregnant. I would sit on my bed, chipping away at things that were being sent my way and trying to remain a part of the teams I was missing.

8:15 am – Breakfast. This was the one meal I didn’t mind ordering off the hospital menu. I quite often got scrambled eggs, toast, apple juice and a yogurt parfait (which I’d save for a snack later). I was, however, incredibly frustrated with the amount of time it took from order to delivery. Stating this happening at 8:15 is being nice. There were days my order was taken and my food would arrive an hour or more later. There were also days my order was taken and I received a completely different order. Did they not know they were dealing with a pregnant woman who needed to eat?!

10:00-11:00 am – Monitor time. For, ideally, only an hour each day, I was put on the monitor. This tracked contractions and baby’s heart rate, indicating whether all was well in there or not. I would typically be communicating, via text, with my husband each day what this time was looking like. Ideally the contraction line would be flat and the heart rate line would be fluctuating somewhere along the 150s. On days that were not going well, they’d keep me on the monitor until things settled down or I needed to be sent to Labor & Delivery.

Pregnancy Monitor

11:30-1:30 – Lunch, IV flush, vitals, pills. Somewhere mid-day I’d put in my order for lunch. If you told me I had to eat off that menu tomorrow, I’d probably gag. For a place that’s supposed to be helping people get healthy, there were very few healthy meal options on the menu. I quite often would get an egg salad sandwich, baked chips and grapes. Grapes, bananas and apples were the only fruit you could get fresh. In fact, they were the only produce in general you could get fresh. All other fruits and all vegetables were clearly either from a can or frozen.

I also typically had a visitor somewhere around lunch time or in the early afternoon. I would sometimes do lunch or coffee with my visitors. Sometimes we’d go outside for a “walk” (a wheelchair ride for me). It’s a very humbling thing to be pushed in a wheelchair by a friend or family member – it made me feel helpless – and the stares you get when you’re in a wheelchair are sad. I’m in a hospital, for crying out loud, why are you wondering why I’m in a wheelchair? And a tip for those who have to push a friend or family member in the future… back into elevators. I can’t tell you how many times I faced the back wall while everyone else in the elevator followed proper elevator etiquette and faced the door.

1:30-5:30 pm – Work. I usually worked until my husband got there, which is later than I had prior to being a hospital patient, but with my visitors and nurse chats, I felt like I needed to make up some time.

Hospital View

6:00 pm – Dinner, IV flush, vitals, pills. Again, I was very disappointed in the hospital menu. When I had to eat off from it, my go-tos were quesadillas, macaroni and cheese with a side of broccoli I’d mix in or chicken tenders and fries. I eat none of these things regularly when I’m at home. In fact, after my hospital stay, I can’t even call myself a vegetarian anymore because I had to at least eat chicken in order to eat more than macaroni and cheese and egg salad for five weeks.

We were given several gift cards to the few restaurants we could get to with me in the wheelchair. These were so greatly appreciated. It was so nice to occasionally grab a meal that actually had flavor and eat on our own time, not needing to call in an order at least an hour in advance. We were also given several homemade meals. These were also a great change of pace for us.

7:00 pm – Outside time/Visitors. Typically in the evening we’d try to get outside. As I mentioned previously, I was only supposed to leave my room for an hour so I didn’t miss my meds/vitals/IV flushes. I soaked in every chance I got to be outside… until my water broke. At that point, I started second guessing whether I should be taking wheelchair rides or not. Every bump made me nervous. After a while, I preferred to only leave my room in the company of my husband who knew just how scared I was to ride in a wheelchair. We went from escaping whenever possible, to escaping only with my husband to, eventually, escaping only on smooth surfaces with my husband which meant no sidewalk which severely limited our areas of escape.

9:30 pm – TV/Read time. Ideally, my husband got to go home at night. He stayed each night that was questionable, but on good nights, he would go home and I would turn to either watching Parenthood on my laptop while crocheting/knitting or reading until my nurse’s last nightly round when I’d typically chat with her for a half hour or so. Praise the Lord for these nurses and their chats. Some were better than others of course, but I felt truly cared for by all of them. Not only did they deal with the nastiness that was my pregnancy with tact, but they talked with me like we were just getting to know each other – not like I was their patient or inferior.

10:00 pm – Nurse chat, IV flush, vitals, pills. I didn’t take every pill at every time noted. I also didn’t have vitals at every time noted – that depended more on my current stage. Regardless, below you’ll see what my wrist typically looked like, what my medicine cocktail often looked like and what my arms looked like the bulk of the time from IVs and failed attempts at IV starts.

IVs and Pills

11:00 pm – Bedtime. My bedtime became later once I was in the hospital since I could sleep in a bit after my numerous morning wake-ups by doctors and nurses.

Some seated hobbies I acquired/continued at the hospital were:

1 – Reading.

2 – Continuing to crochet dish scrubbies and knit dish cloths and then giving everybody and their brother a dish scrubbie or dish cloth.

3 – Making cards for people and/or writing thank you notes.

4 – Binge-watching Netflix.

5 – Chatting with my nurses.

Spoiler alert: This is the last post before things change significantly. Therefore, allow me to mention a few final stats that speak into this time.

I, myself, received 25 cards, 4 book deliveries, 1 balloon delivery, 5 flower deliveries, 2 donut deliveries, 4 Starbucks deliveries, 3 ice cream deliveries and 53 sets of visitors in my time as a hospital patient amongst several meals and gift cards provided for my husband and me. We had family mowing our lawn, taking care of our dog and even doing our laundry at times. Our village rallied something fierce. We will forever be grateful to know how loved we are – to know that in our weakest there is a strength surrounding us that’s far greater than you could even imagine. God blessed us with good ones. No, He blessed us with the best.

In the stats: 
Gestational Age: 27 weeks, 3 days
Days of blood: 62
Days of bedrest: 83
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 7
Days in the hospital: 33
IV starts: 6 (12 IV pokes)
Magnesium drips: 3
Trips to Labor & Delivery: 5
Sets of visitors: 53

Sponsor Oaklee's March of Dimes team.

The Baby Shower

I’d made it to the day of goal #1 – my baby shower. There was a lot of talk around how baby showers should be handled when the mom-to-be is a hospital patient limited to an hour or so of wheelchair privileges. I’d always imagined my baby shower would be thrown in a house and we’d measure my 8 months pregnant belly with yarn and eat chicken salad sandwiches while trying to get each other to say the word “baby” in order to win some sort of game, but here we were… 6 months pregnant, confined to the hospital and uncertain I’d last much longer.

6.25.17

“Our next goal is 28 weeks, which we’ll celebrate with the GR 4th of July fireworks. I’m not super optimistic about tonight given my day, but I’m hopeful we can hold off another week. Time will tell.”

The 24th marked 27 weeks pregnant – a 90% chance of survival for our baby girl, and the last week of this terrible trimester. To keep myself in good spirits, I’d been keeping a countdown in my journal to three dates: My baby shower on the 25th, getting into the third trimester on July 1st and viewing the Grand Rapids 4th of July fireworks from my corner suite with a view in the hospital, which happened to fall on July 1st as well.

I’d made it to the day of goal #1 – my baby shower. There was a lot of talk around how baby showers should be handled when the mom-to-be is a hospital patient limited to an hour or so of wheelchair privileges. I’d always imagined my baby shower would be thrown in a house and we’d measure my 8 months pregnant belly with yarn and eat chicken salad sandwiches while trying to get each other to say the word “baby” in order to win some sort of game, but here we were… 6 months pregnant, confined to the hospital and uncertain I’d last much longer.

In fact, the very morning of the shower I’d lost more clot, causing irritability and discomfort, threatening an L&D visit and making me sweat while saying to the nurse, “You know I can’t go to Labor & Delivery, right? Today’s my baby shower.”

My usual morning monitor time expanded from one hour to two and I gulped styrofoam cup after styrofoam cup of water in attempts to ward off contractions due to irritability, but knowing full well that a full bladder can cause them too. I was trying to pick the lesser of two evils in this moment.

Whether the water helped or not, they took me off the monitor and sent me over to the cafeteria of the children’s hospital for my baby shower by 1:00 pm where my extended family and my best friend were waiting for me. My sister-in-laws threw a, all things considered, relatively normal baby shower. We ate. We played games. I opened gifts. We had cake. We talked about what baby’s room will look like. We dreamed about what she’ll be like someday. For an hour and a half, we just celebrated the life that would come at the end of this without thinking about the threats we were facing and the crappy phase we were navigating.

Despite my morning, my afternoon was beautiful. And then my sister-in-law packed up all my gifts and brought them to my house. I wouldn’t unpack, open or even see them again until baby girl arrived.

Baby Shower

Going back to the hematoma/previa situation. My ultrasound on the 23rd revealed no significant change despite the clot loss throughout the 21st and 22nd. While we’d hoped, given the amount of clot lost, the hematoma would be gone, we realized with this ultrasound just how large it really was. Therefore, our view of the hematoma/placenta was still a literal grey area. Previa or not, the makeup of my womb was still not good.

In the stats: 
Gestational Age: 27 weeks, 1 day
Days of blood: 60
Days of bedrest: 81
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 7
Days in the hospital: 31
IV starts: 6 (12 IV pokes)
Magnesium drips: 3
Trips to Labor & Delivery: 5
Sets of visitors: 53

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His Plan Will Prevail

Having survived on flavored ice and contraband fruit snacks, contractions and clot loss diminished and by 6:45 pm the next day, I ordered dinner and was sent back to my room on the OB Special Care floor. I’d remained pregnant through yet another visit to L&D – our longest and most disgusting visit, but one that gave me hope for about 24 hours that maybe even a small part of our chaos was going to resolve.

Warning: this post is NOT for the medically squeamish… I almost threw up three times while writing it.

6.21.17

“I finally allowed myself to look up statistics for the first time. After our NICU visit, I felt optimistic enough to do so… If we can make it to 28 weeks, her chances of survival will be up to about 96%. Her chances of having a ‘serious, lasting disability’ are about 1 in 4 right now. I have to believe she’s going to survive. I want to believe she won’t have any lasting disabilities. We’re fully aware she’ll be immediately whisked away at birth for serious medical attention, but I’m in one of the best places in Michigan for that, which is a huge blessing. I trust God is at work. His plan will prevail. His plan will prevail.”

In the past 10 weeks, I’d bled 56 of 70 days. According to the average menstrual cycle, that’s like having 14 periods in the amount of time the average woman would have 2. Blood loss was nothing new. By now, we knew it’s cause – the abruption of the placenta – the interior wound that would most likely continue to bleed until I no longer had a placenta. Though it wasn’t keeping up, my body’s response was to clot where and when it could, creating a large hematoma at the site of the abruption and confusion via ultrasound as to what was placenta and what was clot.

And then on the morning of the 21st, I entered new territory yet again. In my morning blood gush rush, a large, golf ball-sized chunk of clot made its way out. I dry heaved and then called my nurse. The uterine irritability from blood/clot loss had spurred contractions once again and by 10:00 am I was back on the Labor & Delivery floor for my fifth time, acquiring my sixth IV and my third round of magnesium.

Throughout this stay, I continued to lose several golf ball-sized clots.

Plop. Gag. Plop. Gag.

I tried to spare my husband the details of the nastiness that was currently his clot-losing wife, asking him to turn his head or close his eyes at times. Naturally, and not unlike everyone else in the room, he was curious. To give him an idea of what I was going through, I shared with him an image forever ruined for us by this day – cherry pie.

This was the most disgusting thing my body has ever done.

And if getting help to use a bedpan isn’t the most humiliating thing I had to go through, having the nurses take my clots out of the room to weigh them certainly was. What kind of world was I living in that they were weighing what was coming out of my body?

This was also, however, the most fascinating thing my body has ever done.

The attending physician, Dr. M, spent additional time with me during this visit, marveling at the wonder that was a uterus that was supposedly sealed shut by previa yet somehow ridding itself of hematoma. He wheeled in an ultrasound machine with three nurses in tow to check if maybe, just maybe, what was assumed previa was actually hematoma and maybe the birth canal had been cleared given the substantial amount of clot I’d lost. But with his wheely-cart ultrasound machine, he couldn’t clearly see if a difference had been made by my body’s shedding of hematoma.

Having survived on flavored ice and contraband fruit snacks, contractions and clot loss diminished and by 6:45 pm the next day, I was brought dinner – chicken strips, fries and cheesecake with, low and behold, cherry pie filling on top.

Having scarfed down everything but the dessert for obvious reasons, I was sent back to my room on the OB Special Care floor. I’d remained pregnant through yet another visit to L&D – our longest and most disgusting visit, but one that gave me hope for about 24 hours that maybe even a small part of our chaos was going to resolve.

Dr. M ordered an ultrasound by the ultrasound tech to be performed the next morning. He was confused, like us, as to how I could lose clot from a birth canal that was “sealed shut” by previa. Could the perceived previa actually have been hematoma? Had my body rid itself of enough hematoma to reveal the possibility of a vaginal delivery if my breech baby, who had no amniotic fluid to swim around in and was therefore generally constricted to one tight position, could flip?

Only God fully knew what was going on. I choose to trust Him every day, and on this particular day, all I knew was His plan would prevail.

In the stats: 
Gestational Age: 26 weeks, 4 days
Days of blood: 56
Days of bedrest: 77
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 6
Days in the hospital: 27
IV starts: 6 (12 IV pokes)
Magnesium drips: 3
Trips to Labor & Delivery: 5
Sets of visitors: 50

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Father’s Day

The weekend of Father’s day was gorgeous for so many reasons… And then Kevin went home and we began yet another week of living our disjointed lives, me in the hospital and Kevin somewhere between work, home and hospital.

6.18.17

“Days like today give me hope that we could still be here for a while.”

The weekend of Father’s day was gorgeous for so many reasons. Friday was filled with visitors. Saturday began with a donut delivery. I was feeling so good about myself that I even let my husband go home for the afternoon to recoup a bit and so I could work to make up the hours I missed for having so many visitors on Friday.

When my husband came back in the afternoon, we got our weekly celebratory Starbucks frappacinos and enjoyed some time outside in the beautiful weather. My husband wheeled my wheelchair as far away from my hospital room as we could get and we sat briefly in a parking ramp overlooking Grand Rapids where I pretended, for just a moment, I was on vacation, soaking up the sun and pointing at buildings and ludicrously claiming they were landmarks in northern Michigan.

Then we made a late night move to a new room, a room I was both proud and saddened to have. It was my fourth room on the OB Special Care floor, having moved to better and better rooms based on seniority, but this was my final room. I’d arrived at the best of the best. I’d acquired the most seniority. I was only 26 weeks pregnant.

26 weeks – closer to the third trimester and an 80% chance of survival for baby girl. In the time we’d been in the hospital, we’d gone from a 1 in 4 chance of survival to a 4 in 5. Saturday felt good.

And Sunday felt good too. I gave Kevin Jimmy Fallon’s book, Your Baby’s First Word Will be Dada as a Father’s Day gift, and then we lounged around, played some Rummy and colored – yes, colored – some pictures before taking a tour of the NICU.

I honestly don’t remember much from that tour, because theory and practicality quickly collided, and practicality swallowed up every ounce of theory. What I do remember is this; at 26 weeks, they could already tell us we would be able to touch our baby. I had feared we wouldn’t be able to and I innately knew I would need to. In hindsight, I know even better how much a mother needs to touch her baby. This was such welcomed news.

We thanked our tour guide and I was wheeled back to my room in OB Special Care where my parents and in-laws stopped by  respectively so we could see our dads on Father’s Day. And then Kevin went home and we began yet another week of living our disjointed lives, me in the hospital and Kevin somewhere between work, home and hospital.

This being my opportunity, I have to say I knew my husband would be a good dad well before we were even married. I loved that he wanted kids and genuinely looked forward to that phase of life.

Little did we know, we would first have this phase of life, one you can’t be prepared for, and one you navigate day-by-day because each day is truly a thing of its own. People felt bad for me because I was stuck in the hospital, my life completely uprooted, my body completely taken over by pregnancy, but I felt bad for him.

There was the guilt of my body failing as I tried to give him his child, and there was the stress of knowing he was running on empty, driving from home to work to hospital to home to hospital to work to home to hospital… My love and respect for him grew immensely during this time. He navigated the chaos with class. He took me in whatever state I was in each day. He cleaned up after me. He cooked for me. He came to me at the drop of a hat. He sat with me while I cried (and I cried A LOT – like, I cried every day from 16 weeks on). He basically moved into the hospital with me…

So yes, he’s a great dad, but he’s a great husband first. There were aspects of his personality, some that sometimes really get under my skin, that were ideal for this phase. I would not have made it through without him.

In the stats: 
Gestational Age: 26 weeks, 1 day
Days of blood: 53
Days of bedrest: 74
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 5
Days in the hospital: 24
IV starts: 5 (11 IV pokes)
Magnesium drips: 2
Trips to Labor & Delivery: 4
Sets of visitors: 44

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Normal. Please. Normal.

As for those who brought even the smallest piece of normal to me, I don’t think they’ll ever know how much good they did. To have my favorite meal, to try a new donut shop, to sit outside and tell stories and laugh, to go grab a cup of coffee at Starbucks (one of four restaurants I could go to), to have baklava from the Grand Rapids Festival of the Arts, to see my dog, to get a stack of books I was genuinely interested in reading… these were the moments that made this time bearable.

6.15.17

“I’m still praying for several more pregnant weeks, but I know being here and being prepared is a blessing.”

You might think navigating your daily schedule as a hospital patient constricted to your bed would be easy, but you would be wrong. My husband and I set up a Google calendar strictly to schedule my visitors.

In my entire time in the hospital, there were very few days I went visitor-less, and only once did my husband go home after work instead of coming to the hospital. He needed a night off. If we’re being honest, he probably needed more than just the one night off, but I needed him with me more than he needed nights off.

We navigated, together, the busy schedule of people coming to see me, to keep me company, to pay their respects, to drop off goodies for me, to just be my friend in this time, and then we’d run into days like the 15th of June. On the 15th, I made my fourth trip to the Labor & Delivery floor, and we sent out texts, clearing my calendar of visitors, saying, “Not today.” You see, in addition to working 40 hours from my hospital bed and navigating our visitors, I also had that whole trying-to-keep-my-baby-in thing going on.

My fourth trip to L&D was probably the easiest. No speculums, no mag, no bedpan – just a new IV, no eating and lots of monitoring. I didn’t even ask my husband to leave work right away. We waited to see how things would pan out, but as time dragged on, I needed my comrade more to protect my sanity than in case our baby was born. I was pretty certain I would be returning to the OB Special Care floor. This L&D visit felt superfluous.

As predicted, I made my way back up to OB Special Care around dinner time – a wasted day, but another day pregnant. My husband left shortly after things settled to get his life back in order and to pack a bag for his weekend away in the Medical Mile with me, and my visitors rescheduled for the next day, putting five visits on our calendar.

A lot of people have recently asked how it went with our visitors. Did the people we expected to step up do so? Did anyone surprise us? Did anyone disappoint us? Was it awkward? Did it go well?

Yes.

Off the top of my head, I can think of 26 different sets of visitors I had during my hospital time (some very repeatedly). In those people, I had both the awkward, I-don’t-know-what-to-say-to-you visits and the visits that brought light in a dark time. Not in those people, were some of the friends and family I would have expected to be there. I don’t hold grudges for this, for I, myself, am not good at navigating crummy situations with people.

I won’t say who’s who, but I will say this: over time, I became increasingly better at navigating visits. In the beginning, people would ask what they could bring me, but I saw my basic needs being met. By the end, my basic needs far surpassed food, shelter and water and became normal. Bring me normal. Please. Normal.

I am so thankful to have people who thought of me and texted, called, coordinated help and/or food or visited, but I’m even more thankful for the people who were real – the ones who let me cry, laugh, freak out, talk and be honest, the ones who were just family and friends, not family and friends dutifuly visiting their invalid.

“I know you’re fine, Mandi, but what do you actually want?”

I wanted things like ice cream and nail polish and donuts from my favorite donut joint. I wanted to just go grab a bite to eat. I wanted to play card games. I wanted to be outside. I wanted to feel the sun on my face and the grass between my toes. I wanted summer. I wanted normal.

As for those who brought even the smallest piece of normal to me, I don’t think they’ll ever know how much good they did. To have my favorite meal, to try a new donut shop, to sit outside and tell stories and laugh, to go grab a cup of coffee at Starbucks (one of four restaurants I could go to), to have baklava from the Grand Rapids Festival of the Arts, to see my dog, to get a stack of books I was genuinely interested in reading… these were the moments that made this time bearable.

Navigating 40 hour work weeks, numerous visitors and remaining pregnant amongst trips to L&D spread out across a long term hospital stay made anything normal ideal because my life was anything but normal.

In the stats: 
Gestational Age: 25 weeks, 5 days
Days of blood: 50
Days of bedrest: 71
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 5
Days in the hospital: 21
IV starts: 5 (11 IV pokes)
Magnesium drips: 2
Trips to Labor & Delivery: 4
Sets of visitors: 35

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P.S. I hope I’m the better for having gone through this. I hope I’m the person who says, “No, I know you most likely want something, and it might feel petty to you, but it doesn’t feel petty to me. What would make your life even the tiniest better right now?” and then goes and gets the nail polish without judgement, or finds a way to bring melting ice cream from a store to a parking ramp, through a pedestrian bridge, up an elevator and through the halls to a hospital patient.

I hope I don’t project on people what I think they need in their situations, but flat out ask the hard questions instead. “If you could have anything, what would it be? I’m going to get it for you. Do you need a morning visit instead of all your evening visits? I’m going to be there for you. Do you want one less visitor? I can cancel or reschedule for you.”

P.P.S. The picture for this post is a terrible picture of me, but that is me at 25 weeks and 1 day.

Broken Hearts and Other Broken Things

We no longer hoped for improvement. We knew this pregnancy would end in a c-section due to the previa. We knew it could end quickly due to the abruption. While not much had changed with either of those issues, we entered into yet another new territory. The diagnosis? Preterm Premature Rupture of Membranes. PPROM. Broken water.

6.9.17

“Today, I am not strong. I want to go home. I want this all to be over with.”

On the 9th, I had my first ultrasound since being on the OB Special Care floor. My husband and I knew this would be happening in the morning but, despite another chance to see our little wiggler, we opted to send him to work at his usual time – he’d already missed so much work for this pregnancy.

We no longer hoped for improvement. We knew this pregnancy would end in a c-section due to the previa. We knew it could end quickly due to the abruption. While not much had changed with either of those issues, we entered into yet another new territory.

The diagnosis? Preterm Premature Rupture of Membranes. PPROM. Broken water.

I texted my husband at work, “My water’s broken,” and then relayed to him what the doctor had explained to me. We can still prolong this pregnancy. Until 34 weeks – at which point they can do for a baby what the female body can do for a baby – baby girl was still better off on the inside. But the risk at this point was that of infection.

They began a 48 hour antibiotic drip that would then change into five days of oral antibiotics. I began second guessing everything.

“I feel like my body is failing us. I feel unfit for pregnancy… We’re relying so heavily on medical advancements that I can’t help but wonder if we’re missing what God is saying to us. Am I not supposed to be a mom?”

It was a hard day that turned into a hard night, being woken up several times for vitals to be sure infection had not taken over. We’d reached 25 weeks, crossing the threshold of the 50/50 chance of survival for baby girl. Our “celebration” began with a Group B Strep test and me being scrunched up like an accordion and put on the monitor. I didn’t even try to be nice to Nurse S, whom I would later share heart-to-heart moments with. Instead, I cried for the two hours she kept me on the monitor. I was mad. I was uncomfortable. I was failing again.

“I just can’t bring myself to send out yet another negative update on this pregnancy to our family and friends… I’m sick of learning that things can still get worse.”

When I was finally released from my tether that was the monitor, we went out for our celebratory Starbucks frappacinos and then I returned to my room to enter the spa that was a bleeding woman’s shower – the one place I felt clean, unapproachable by doctors and nurses, free to cry, free to relax, free to take off my happy face and just be present with me.

People said I was strong. People didn’t see me on days like this one and in places like the shower.

“Everyone thinks I’m so strong, but I don’t have a choice. If I had an out, I would take it, but my only out is to go through with it.”

In the stats: 
Gestational Age: 25 weeks
Days of blood: 44
Days of bedrest: 65
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 5
Days in the hospital: 15
IV starts: 2
Magnesium drips: 2
Trips to Labor & Delivery: 3
Sets of visitors: 26

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P.S. On the 10th I also had my first, much-needed visit from my dog. If you end up as a long-term hospital patient and you have a pet, do the paperwork to get your pet permission to visit. I missed my little guy so much during that time.