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

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

Sponsor Oaklee's March of Dimes team.

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

Sponsor Oaklee's March of Dimes team.

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

Sponsor Oaklee's March of Dimes team.

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

Sponsor Oaklee's March of Dimes team.

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

Sponsor Oaklee's March of Dimes team.

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.

The Milestone of Viability

I cannot express to you the weight that comes off a parent’s shoulders when it is no longer their signature that would keep their struggling child alive despite any complications she might have forever because of that struggle. In Michigan, 24 weeks is deemed the milestone of viability. We hit that milestone on the 3rd, celebrated with a wheelchair ride to Starbucks for frappacinos, and then I woke up the very next morning to severe abdominal pain. This spurred into motion trip 3 to Labor & Delivery.

6.4.17

“Fear is huge. Pain is constant. Still, as much as I wish this wasn’t happening, this is what we were given. We can only trust that God’s purpose will prevail. He knows what He’s doing. I pray for good outcomes, but it’s His desires that will be made reality. In the meantime, the battle is hard. Hopefully, it’s one of the hardest battles I’ll ever have to fight, because I’m not certain I’m strong enough for anything harder. Some days, I’m not certain I’m strong enough for this.”

Viability. We made it.

I cannot express to you the weight that comes off a parent’s shoulders when it is no longer their signature that would keep their struggling child alive despite any complications she might have forever because of that struggle. In Michigan, 24 weeks is deemed the milestone of viability.

We hit that milestone on the 3rd, celebrated with a wheelchair ride to Starbucks for frappacinos, and then I woke up the very next morning to severe abdominal pain. This spurred into motion trip 3 to Labor & Delivery. Having made it 8 days longer, baby girl’s chance of survival increased to somewhere around 40%.

While they did not put me back on mag during this trip, we did enter into the conversation of whether or not to use the repeat round, that is the final round, of steroids. The math breaks down like this: when given steroids to boost baby’s lung development, they’re most effective the sooner the baby is born after administration. After about two weeks, they lose their effect altogether.

Again, I asked the doctor, “What would you do if you were me?”

She replied, “I would take the steroids. If you make it another two weeks, you’ll be in an entirely different place with baby’s chances of survival.”

In other words, should we deliver, now is the time to do the repeat round. Should we hold off yet again, two weeks would put baby girl at 26 weeks and 1 day, a much better place to be than 24 weeks and 1 day.

I took the steroids.

Shot 1: I’m in Labor & Delivery.

Shot 2: I’m back up on the OB Special Care floor. We did not deliver.

What we did learn on the Labor & Delivery floor that day was this: L&D is not a place for visitors. My half naked, contracting, hungry, tired self did not tolerate well the two sets of visitors who showed up. After set two, I burst into tears and told my husband, “No more. From now on, this is not a place for visitors.” In fact, aside from the fruit snacks I had my husband sneak me, I didn’t even allow eating in the room when I was on that floor. It wasn’t exactly comforting to watch someone eat when you were denied food.

After being released back to OB Special Care, I ate my victory meal – chicken quesadillas – and we ventured outside despite how terrible I looked and felt. I needed the sun on my face like I needed the air in my lungs those days. Get me out of the sterile hospital and into the little bit of nature my wheelchair wheels can get me to.

wheelchair privileges

In the stats: 
Gestational Age: 24 weeks 1 day
Days of blood: 39
Days of bedrest: 60
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 4
Days in the hospital: 10
IV starts: 2
Magnesium drips: 2
Trips to Labor & Delivery: 3
Sets of visitors: 17

Sponsor Oaklee's March of Dimes team.

The Midnight Call

I climbed onto the stretcher and made the midnight call to my husband – come back, we might be having our baby. Again, our car sat in the emergency room parking lot. Again, I was denied food in case we went into surgery. Again, I was hooked up to a magnesium drip, convinced my skin might be on fire and my blood was lava flowing through me. Again, I cried instead of sleeping. 

6.1.17

“All I want to do is make it to the end of this. Each day is a gift. Apparently some of them are going to be really difficult gifts to bare.”

On Wednesdays, typically my husband and I hang out with our small group in the evening. We’re really blessed to have a great group of friends not only journeying with us through difficult times like this, but through everyday life as well. When things started going awry, they quickly stepped in, putting together a meal sign up, stopping by with little things to brighten up our day and, most notably, visiting/hanging out with us in a way that made us feel normal.

On Wednesday, May 31, my husband came to the hospital, like he did every day after work, ate dinner and headed out for a night with the small group guys. The girls came to the hospital to spend an evening with me. One had arranged to pick up my favorite dinner. Another had arranged for us all to decorate onesies together for baby girl.

painted onesies

As we decorated the onesies, I began to feel off. I couldn’t decide if I’d gobbled up my favorite dinner too quickly or if I was truly feeling something botched pregnancy related. There was pressure in my lower abdomen. After the girls left and I was alone, the pressure escalated into clear contractions.

I called my nurse in, Nurse B, and she put me on the monitor for my third time that day. Not only was I contracting, but our baby’s heart rate was tachy, coming in around 180 beats per minute, about 20 beats per minute too high. Nurse B calmly and quickly got me changed and on my way back to the Labor & Delivery floor. I realized somewhere in this sequence of events that I’d crossed into a new, dignity-less dimension. When Nurse B held up the hospital gown to give me privacy, I didn’t care that I was stripping naked whilst sitting on the toilet in front of my new friend.

I climbed onto the stretcher and made the midnight call to my husband – come back, we might be having our baby.

Again, our car sat in the emergency room parking lot. Again, I was denied food in case we went into surgery. Again, I was hooked up to a magnesium drip, convinced my skin might be on fire and my blood was lava flowing through me. Again, I cried instead of sleeping.

And again, I had an IV start. I had to keep an IV in at all times, whether it was hooked up to anything or not. When it was not hooked up to anything, the nurses would regularly flush it to guarantee it would work should I be rushed into surgery. For every IV start I had, it can be assumed it took at least two pokes to get it right.

What you should know about me is that I hate all things medical. (I’m breaking into a sweat just thinking about IV starts.) The nurses were given the ok to prolong my IVs if they flushed well because pokes make me panicky. This particular IV start may have been the worst. I needed a new one anyway, I was going on day 7 which was the limit, but I had been told I was going back on mag, and then in came the nurse with a needle just shy of the size of a Capri Sun straw. (I might be exaggerating, but I did need a larger needle because it was assumed I would need blood after the cesarean, and possibly quickly.)

Poke #1 – I’m hot, and we haven’t even started the mag.

Poke #2 – I’m blacking out.

The nurse left and came back with a nurse friend. She gave me some lidocaine to numb the area and poked again. I survived IV start number two.

Contractions, bedpan, IV start, magnesium, sleep deprivation, food deprivation, fear, anger… I survived trip two to L&D as well. At 10:30am on the first, they sent me back up to the fourth floor where our unofficial welcome committee of nurses cheered as I was wheeled back into my room still pregnant.

In the stats: 
Gestational Age: 23 weeks 5 days
Days of blood: 36
Days of bedrest: 57
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 4
Days in the hospital: 7
IV starts: 2
Magnesium drips: 2
Trips to Labor & Delivery: 2
Sets of visitors: 13

Sponsor Oaklee's March of Dimes team.

Alone in a Building Full of People

We choked back emotions as we said goodbye for our first time in this new stage. We were supposed to be giggling, giddy for the birth of the baby that would take us from two to three, babymooning, putting together a nursery and dreaming of what life would be like in four months. Instead, Kevin walked out of my hospital room, retrieved our car from the emergency room parking lot and went home alone to the house I would not see again until our baby was born.

5.29.17

“I think we both wish so badly this didn’t have to be a part of our story, but it’s completely in God’s hands. All we can do is pray for the best.”

It was a weird sort of unworldly experience, that first weekend in the hospital. We hadn’t fully understood what this phase of our lives was going to look like. We lived somewhere between bliss and denial. Baby girl was still on the inside, but so was I.

On Saturday, I was administered the second dose of my rescue round of steroids. Otherwise, over the weekend, I’d returned to steady, though steady now meant losing blood consistently throughout the day as well as the nightly gushes.

My husband stayed with me, sleeping on the chair/lounger, bless his soul, through Monday, it being Memorial Day. We had several visitors, family and friends, and I was given wheelchair privileges, so we ventured out into the beautiful weather for an hour here and there, making sure I was back in time for pills, IV flushes and vitals.

We marveled at how when we’d left our house on the 26th, we’d packed overnight bags for the wedding I was standing in the next day, and while our packed attire did not exactly fit the hospital scene, we were lucky to have our toiletries, pajamas/lounge clothes, cell phone chargers, my body pillow, and some other necessities right in our car. We were lucky to have had Kevin home from work early, on a day when we thought we were crossing the state in the afternoon, but instead admitted me to the hospital. We were lucky to have had our dog packed up and ready to go to my parent’s house for the weekend that would turn into the summer.

And then Monday evening came.

Our holiday weekend, filled with too much excitement and a getaway to the Medical Mile of Grand Rapids, came to a close.

For one of us.

Kevin had to return home, to take care of our house, to go back to work, to sort out our lives a bit.

And I was left alone.

We choked back emotions as we said goodbye for our first time in this new stage. We were supposed to be giggling, giddy for the birth of the baby that would take us from two to three, babymooning, putting together a nursery and dreaming of what life would be like in four months. Instead, Kevin walked out of my hospital room, retrieved our car from the emergency room parking lot and went home alone to the house I would not see again until our baby was born.

I cried. Oh, I cried.

You can be surrounded by people all day long as a hospital patient – doctors, nurses, visitors – but they all go home at the end of the day. This would be my first experience of significant loneliness in a time when I was never more than 25 feet from another person. However, the only other people who could truly understand the loneliness I felt were also locked away in their rooms until they, too, were granted wheelchair privileges and their family or friends retrieved them. Still, we didn’t chat even when we did see each other.

Though my body was best when still, my mind was not. I learned to keep myself busy. I continued working from the hospital. I crocheted more and more dish scrubbies. I shared my days with endless visitors. I chatted with my nurses. I read books. I journaled. I checked on and tweaked our baby registry almost nightly.

I did anything to keep my mind from reminding me just how isolated I felt.

In the stats: 
Gestational Age: 23 weeks 2 days
Days of blood: 33
Days of bedrest: 54
Pre-Hospital Stay Doctor’s Appointments: 8
Ultrasounds: 4
Days in the hospital: 4
IV starts: 1
Magnesium drips: 1
Trips to Labor & Delivery: 1
Sets of visitors: 8


Sponsor Oaklee's March of Dimes team.

P.S. I have to note the real heroes in this stage of our pregnancy, my nurses. I’ll mention some here and there in the upcoming posts, but it shouldn’t go unsaid that yes, I was beyond lonely, but these girls were absolute godsends. They chatted with me, laughed with me, cried with me and cared about me as if I hadn’t just entered their lives a few days ago. 4 Center, OB Special Care, is a truly special place. While I hope I’m never their patient again, I so badly miss some of those girls who so quickly became my friends.