Is It ok for Me to be at Home?

But by the 21st of June, we’d entered into new territory. I was living at home in a stage of pregnancy where I’d lived in the hospital last time. Though I probably didn’t need to, I felt like a time bomb once again. But this time, I wasn’t down the hall from the nurses and doctors who could help me. I was a 25 minute drive away.

Oops, sorry for the delay – coming off from the COVID quarantine and heading right into a last minute decision to buy a house and move this summer. 2020 is truly the craziest.


6.21.19

“We’re 5 days past the day we landed in the hospital with Oaklee. It is crazy and emotional and stressful…”

Just over two weeks past the diagnosis of an echogenic bowel in our son, we’d already found peace in the unknown there. We’d gone through the same phases of shock we’d been through beginning the day we landed in the hospital with our daughter when they told us everything that would probably be wrong with her if she were born that day.

Shock, grieving, mourning, depression, acceptance. We felt all the feels.

When it comes down to it, though, here’s our thing about “disabilities”. We believe in a purposeful God. If God had wanted my daughter to be blind, for example, like the doctors told us she probably would be, he would have done that. And we would have survived. We would have figured out how to do life with a blind child. Would it have been easy? My guess is no.

And if God wanted our son to be “abnormal”, we would figure out how to do life with whatever that might look like, too. Would that be easy? Probably not.

But by the 21st of June, we’d entered into new territory. I was living at home in a stage of pregnancy where I’d lived in the hospital last time. Though I probably didn’t need to, I felt like a time bomb once again. But this time, I wasn’t down the hall from the nurses and doctors who could help me. I was a 25 minute drive away. With our daughter, I went into labor for my first time at 22 weeks and 6 days. The doctors and nurses reversed it 5 times before I delivered my daughter on the 6th time. 

If I went into labor now, with my son, what could be done? What would it look like? The whole point of only carrying to 36 weeks instead of 40 was so that my body wouldn’t have to go into labor and risk a uteran rupture on account of my previous classical cesarean section. How fast would things move? Would I be ok? Would my baby be ok? Is it ok for me to just be living at home right now?

In the stats: 
Gestational Age: 23 weeks, 4 days
Doctor’s Appointments: 7
Ultrasounds: 3
Makena Injections: 7

What Will Be, Will Be

I look forward to holding our son. God can make his body however he wants, and what will be, will be. But my hopes and dreams for this boy are big, and I just wish I could keep him safe…

6.14.19

“Every day we’re farther away from last week Thursday, we become more and more at peace. I’m worried each next appointment will just make us worried again if we don’t soon get good news. I look forward to holding our son. God can make his body however he wants, and what will be, will be. But my hopes and dreams for this boy are big, and I just wish I could keep him safe…”

In the stats: 
Gestational Age: 22 weeks, 4 days
Doctor’s Appointments: 6
Ultrasounds: 3
Makena Injections: 6

The Only Way Out is to See it Through

I found myself unable to pray for a miracle. I couldn’t expect God to pull us out of the muck again, brush us off, and send us on our way. It felt too insensitive to those who’ve been on the other end of our situations – to those who are also asking the question, “Why me?” So instead of a miracle, I prayed for something manageable. I didn’t need things to be easy, I just needed the strength to manage whatever was to come.

6.9.19

“Lots of tears these past few days. We’re a little bit mad, a little bit sad, a lot scared and just so, so confused. Why? Why do we have to worry our way through a pregnancy again? It feels like there’s a target on our backs. It has me questioning so much…”

On June 9 of 2017, I found myself asking the big questions when things continued to spiral out of control in our first pregnancy. I wondered if we were missing what God was saying to us. I wondered if we weren’t supposed to be parents of biological children. I couldn’t fathom such a rocky pregnancy leading to a healthy baby for no good reason.

On June 9 of 2019, days after the diagnosis of baby boy’s echogenic bowel, it felt like I’d landed right back in that dark place. Maybe God had, indeed, been trying to tell us something with that first pregnancy when he took us to the very border of death before bringing us all the way back to a healthy family of three. 

“Today, we’re proceeding as if this is all going to smooth over. But the reality is that it might not. We might not have a “normal” child. We might not have a healthy child. We might not have a child… is it too much to ask God to spare the life of yet another child for me?” 

I felt as though God had given me a life’s allotment of miracles back in 2017 when he saved my daughter from “the sickest of the sick”, when he brought her back from the border of death, breathing life into the lungs that weren’t ready for life and growing her 2lb 12oz body into a healthy baby. It felt foolish in 2019 to hope that things might just clear up again, that we might walk away from an abnormality, unscathed, as a family of four. Why should I deserve another miracle? 

Our love for our growing baby didn’t waver once from the moment we found out he may have some health issues. But what we saw immediately was a different future for our family. We wondered how much of our boy’s first few years would be consumed with doctor’s appointments. We wondered if he would ever be independent. We wondered if this would prematurely take his life. 

I found myself unable to pray for a miracle. I couldn’t expect God to pull us out of the muck again, brush us off, and send us on our way. It felt too insensitive to those who’ve been on the other end of our situations – to those who are also asking the question, “Why me?” So instead of a miracle, I prayed for something manageable. I didn’t need things to be easy, I just needed the strength to manage whatever was to come.

“We will play the cards we’re dealt, but please, PLEASE, let this be a manageable hand.”

We entered into yet another season of heightened worry. On the outside, we were brave. On the inside, we were broken hearted. But the only way out was to see it through.

In the stats: 
Gestational Age: 21 weeks, 6 days
Doctor’s Appointments: 6
Ultrasounds: 3
Makena Injections: 5

That 11-Letter Word

Post-poke, things got weird. Nurse N’s non-verbal communication changed as she told me – without looking me in the eye and while keeping her hands busy over paper work and organization – that Doctor H wanted to quick check in with me before I left. We made our way to an examination room I’d never seen before, and I sat there subtly on edge as I waited.

6.6.19

“I left what was meant to be a two minute appointment 45 minutes later and sat in the parking ramp while I broke the news over the phone to Kevin. Again, we question. Again, we worry. Again, we cry. My heart hurts so bad. I want to believe this is nothing, but only time will tell.”

Four Makena Injections in, on June 6 I headed back to my doctor’s office to pick up my next set of injections and be administered one. I drove the 20 minute trip downtown, parked in the parking ramp and made my way up to the office to meet Nurse N for a quick poke before she’d send me home with my goody bag of my next three injections. 

But post-poke, things got weird. Nurse N’s non-verbal communication changed as she told me – without looking me in the eye and while keeping her hands busy over paper work and organization – that Doctor H wanted to quick check in with me before I left. We made our way to an examination room I’d never seen before, and I sat there subtly on edge as I waited.

Doctor H walked in with the words, “Oh Mandi, why can’t anything just be easy for you in pregnancy?” I honestly still thought she was just referencing the inconvenience of coming downtown every four weeks to pick up my injections, but then she reminded me of my repeat ultrasound just three days prior to this visit. 

We’d been told we needed a repeat ultrasound due to the inability to get all of baby boy’s measurements at our early anatomy scan. But apparently, we needed it because they suspected there may be a problem. In the anatomy scan, they detected an abnormality of the bowel. In the repeat scan, the abnormality was repeated…

Baby boy was diagnosed with an isolated echogenic bowel. In laymen’s terms, he had something in his bowel at a time when babies should not yet have anything in their bowels. What was it? We didn’t know. But what could it mean? It could mean a few things. Echogenic bowels are a marker of both cystic fibrosis and Down syndrome. Baby boy’s case being isolated, we had no other markers to indicate which, if either, it might be, and in fact, it could still mean nothing at all. 

I’ve taken in bad news from a doctor before. Coincidentally, almost exactly two years prior to this date, I had one of the most notable doses of bad news in my life when I was told my water broke with my first baby at just 25 weeks gestation. I knew I needed to ask questions while my resource was standing right in front of me, but I was so blindsided by the news. Doctor H pressed forward, and explained my very limited options:

  1. I can enter into a whole season of genetic testing on me, baby, and even my husband if necessary to foresee our fate and decide where to go from there.
  2. We can wait it out and go through yet another repeat ultrasound to see if anything changes.

I hadn’t even left the examination room before I knew my temporary answer. I asked Doctor H, “What’s the point of doing the genetic testing now if it won’t change how we love this baby when he’s born?” I wanted to believe things would clear up before another ultrasound, and we wouldn’t need to have used this time to educate and prepare ourselves to parent a child with a disability. But if I’m being honest, I didn’t believe that. What gave me solace was knowing I had enough time remaining to go back on my decision and get the testing if I found I couldn’t wait it out after all.

I stood stoically at the checkout, trying to schedule another repeat ultrasound – one that was not noted on my checkout form. My heart clenched when the administrative assistant asked why I was having another ultrasound and if the doctor did, indeed, order it. I quietly spoke into being, “There was an abnormality…” As tears threatened my eyes, I scheduled the scan, rushed to the elevator and all but ran to the shelter of my van in the parking ramp.

An abnormality. That 11-letter word. Again. Why?

I texted my husband, asking him to step out for a phone call. When he called, I broke the news to him as I broke down. Meditating on this new news and our uncertain future, I drove back to work and attempted to finish my day as planned. 

We began the process that night of sharing our news with our inner-most circle – a rip-the-bandage-off approach. We re-iterated our situation again and again for our parents and each of our siblings. Here’s what we know. Here’s what we do not know. Here’s our plan. We’ll keep you updated. By the last conversation I’d become immune to the pain this news was causing me. I was emotionally exhausted. It was time to sleep. It was time to move forward.

In the stats: 
Gestational Age: 21 weeks, 3 days
Doctor’s Appointments: 6
Ultrasounds: 3
Makena Injections: 5

“Redemption”

I didn’t want to be told how strong I was during my first pregnancy when I was cracked to the very core on the inside yet smiling on the outside. And I didn’t want to be told how redeemed I must feel during this second, presumably much safer pregnancy, when I was terrified.

5.30.19

“Everyone says what a ‘redemptive’ pregnancy this must be since it’s going so well, but pregnancy is not about me. I’m facing significant risks to my body to bring this baby into the world. If it were about me, and it was redemptive, I wouldn’t be so terrified. I’m not scared of what happened last time. I’m scared of what could happen this time…”

Is there anything we crave more than redemption? The happy ending, the eradication of past hurts, the relief, the good vibes, the resolution – we want it so badly, and we want it everywhere. Alleviate poverty. Fight hunger. Free the captives. Find the missing. Cure the cancer.

Our hearts long for redemption.

Yet I struggled to see pregnancy as a place for redemption.

Don’t take my past pains from me. Don’t take my scars, my hurts, my experiences, the things I’ve learned. They make me who I am and they’ve shaped everything I know and believe about my ability to safely bring a baby into the world. 

I didn’t want to be told how strong I was during my first pregnancy when I was cracked to the very core on the inside yet smiling on the outside. And I didn’t want to be told how redeemed I must feel during this second, presumably much safer pregnancy, when I was terrified. I knew too much and too little at the same time. I knew what could happen, but I’d gotten through that before. What I didn’t know was what would happen if a body – one that’d been vulnerably cut before, one that couldn’t even risk carrying a baby to full term – went into pre-term labor again.

When my doctor suggested Makena injections, I didn’t have to think twice before saying, yes, please, let’s do it. They are precautionary, and potentially unnecessarily so. They are expensive. They are a pain to get your hands on – a process that includes probably close to 100 phones calls between your doctor, your insurance company and a specialty pharmacy. They are a pain when physically administered – an experience that must be observed religiously on the same day each week and is meant to happen at your doctor’s office, creating weekly appointments. They are such a nuisance.

But hopefully you’ll get to the end and wonder if they were the difference or not.

My doctor was gracious enough to send me home each quad (the injections came in packages of four – a month’s supply – requiring you to call to start the process of obtaining the medicine over again five times to get your full 20 shots from weeks 16 to 36) and let my nurse of a neighbor administer them. Praise be to God for my neighbor who saved me from approximately 16 trips downtown by agreeing to stop by each Thursday night and poke me. Some women get approved to have the equipment and medicine shipped right to their house so they can administer the injections themselves. Not approved for that, I had to slip in under the radar and take a mysterious looking goody bag home each month from my doctor.

I was so terrified of going into pre-term labor, that I think I would have done anything my doctor suggested. Makena injections felt so simple, so I chased them with very little physical exertion and definitely no questionable “can-you-do-this-if-you’re-pregnant?” moments. I was about one step away from putting myself on bedrest.

So did I feel redeemed? No. I felt terrified. 

In the stats: 
Gestational Age: 20 weeks, 3 days
Doctor’s Appointments: 5
Ultrasounds: 2
Makena Injections: 4

Blue Moon

Pregnancy ultrasounds have never been an exciting thing for us. Our first experience was with a wheely-cart-toting-not-an-ultrasound-tech doctor we fled to when things turned south in pregnancy number one. Our first true experience was in an emergency room just shortly after that when we’d incorrectly assumed we’d lost that baby due to circumstances. Every ultrasound following those two – for our first pregnancy and this one – was set in an environment of held breaths, somber looks, and silent pleas to the Lord.

5.9.19

“The littlest nugget is a boy! The ultrasound went very well. There is no previa, which gives us hope that might also avoid abruption. That means we just have to get by without pre-term labor (or, of course, any other complications). We’re remaining optimistic, but we’re not oblivious to the risks here. We need this kiddo to stay in until the 36 week c-section. Anything sooner would be considered an emergency and most likely result in a NICU stay… again…”

Pregnancy ultrasounds have never been an exciting thing for us. Our first experience was with a wheely-cart-toting-not-an-ultrasound-tech doctor we fled to when things turned south in pregnancy number one. Our first true experience was in an emergency room just shortly after that when we’d incorrectly assumed we’d lost that baby due to circumstances. Every ultrasound following those two – for our first pregnancy and this one – was set in an environment of held breaths, somber looks, and silent pleas to the Lord.

“Please, don’t let things be worse in there.”

With no reason to believe anything might be amiss, we still went into this ultrasound with a palpable level of anxiety. On this day, we would learn what our baby’s environment was like in there… and we’d learn our baby’s gender.

Having switched to a private practice for this pregnancy, our doctor understood and felt our anxiety. She brought us in three weeks early for our anatomy scan to either calm some nerves or get an earlier warning of what was to come depending on how things looked on the inside. Switching to a private practice was one of the best decisions we could have made. Our ultrasound tech on this day, not sworn to secrecy by a hospital system, quickly shared that she didn’t see any signs of previa or abruption. With relief, we watched our nugget wiggle and squirm as she took measurements and pointed out the hands we would hold, the heart we would hug, the toes we would tickle.

And then she sent us on our way with a sealed envelope that held an indication of baby’s gender. The envelope all but on fire in my hands, we went down the hall so I could receive my first Makena injection, waited at the checkout, walked silently to the elevator, and immediately began gushing our guesses when the doors closed and we were alone for the 20 second ride. The doors opened and we walked to the parking lot where we then decided there was no point in waiting any longer.

As we sat in our van, I slipped my finger into the envelope and pulled out the anatomically explicit photo that answered our prayers – a boy. While Kevin and I had both said we’d be fine with either gender, our hearts were honestly yearning for a boy. A boy could complete our family. A boy would give Kevin the son most men long for. A boy would give us the world from a new perspective. We drove home and took our suppressed giddiness back to work before celebrating that night with Oaklee over Blue Moon ice cream and blue balloons. 

A boy. 

Our baby was a boy.

And my body was being good to him unlike it was for his sister.

We were over the moon. 

In the stats: 
Gestational Age: 17 weeks, 3 days
Doctor’s Appointments: 4
Ultrasounds: 2
Makena Injections: 1

The End of an Era

It was the end of a short era. On May 3, Oaklee was 22 months and 4 days old and I breastfed her for our very last time. She would go on to deplete what was once an overwhelming freezer stash via bottle/cup, but May 3 was the last time the two of us would sit down together and snuggle up for a feed.

5.3.19

“I can’t quite explain how grateful I am for the experience (of breastfeeding Oaklee) or how proud I am of our success. Doctors said we’d never do it. They said she wouldn’t thrive if breastfed. Well they can eat their words. She’s 22 months old and thriving.

It was the end of a short era. On May 3, Oaklee was 22 months and 4 days old and I breastfed her for our very last time. She would go on to deplete what was once an overwhelming freezer stash via bottle/cup, but May 3 was the last time the two of us would sit down together and snuggle up for a feed.

While I wanted some time to have my body to myself between kids, being pregnant but not breastfeeding was going to have to suffice. Had I not been pregnant, I honestly don’t know that I would have weaned quite yet. I was open to continuing for a couple more months, but now a couple more months would have put us that much closer to starting the process all over again.

As for the last 22 months? I can’t say for sure that I clung to breastfeeding because I was bitter over being told it would never happen. It’s possible I kept going because I truly am just that passionate about breastfeeding babies. Or maybe we made it to 22 months simply because it’s what worked for us. It’s how the cards played out. But that 22 month journey was anything but easy. From exclusively pumping, to over-producing, to sitting in the rocking chair and crying together when we just couldn’t get it to work, to seeing improvement, to making a commitment, to figuring it out, to becoming comfortable, to becoming pros… Those 22 months were quite something – a time I will forever cherish. 

But in just four months, that process would start over. And I didn’t know what it would look like that next time, but I was grateful for the break until then. I was grateful to be tether-free – to be able to leave the house without a baby or pump. Until September…

In the stats: 
Gestational Age: 16 weeks, 4 days
Doctor’s Appointments: 3
Ultrasounds: 1

The Invisible Brick Wall

For most women, 16 weeks is the sweet spot of a pregnancy. At 16 weeks, you’re usually past the morning sickness/exhaustion of the first trimester, but not quit into the phase where you feel like an injured whale. You’re excited to be out of the territory where so many miscarriages happen, and you get to start putting together a nursery. Your baby bump is just making its true appearance, but you can still wear a lot of your normal clothes. For most women, 16 weeks is beautiful. 

4.29.19

“In our last pregnancy, this is the day we learned our fate. It was the day my world spun out of control… I’m not stressed about having previa/abruption/PPROM again. It feels like I already drew the short stick there, but preterm labor? I’m terrified. Weeks 16-20 will be emotional, but weeks 30-36 will be terrifying. Going into labor could mean losing the baby and/or my ability to have future babies. Our family isn’t complete. I’m too young. I can’t have that taken away from me…

It’s April 29 – did you think I forgot about this story? There just honestly were not any updates – things were going smoothly –  but on April 29, we hit the invisible brick wall of 16 weeks. Physically, we had no reason to be scared. Emotionally, I knew this day would hit me hard.

For most women, 16 weeks is the sweet spot of a pregnancy. At 16 weeks, you’re usually past the morning sickness/exhaustion of the first trimester, but not quite into the phase where you feel like an injured whale. You’re excited to be out of the territory where so many miscarriages happen, and you get to start putting together a nursery. Your baby bump is just making its true appearance, but you can still wear a lot of your normal clothes. For most women, 16 weeks is beautiful. 

In pregnancy #1 for me, 16 weeks was horrendously bloody. I thought, for sure, I had lost my baby, but instead learned that I had simply become the statistical minority – the friend of a friend – the person with placenta previa/abruption. Our fate was sealed on that day with that pregnancy.

But this one would be different.

And still, 16 weeks was hard. 

Physically, I felt great. Emotionally, I began my trajectory of the many outlying emotions that would come with this pregnancy. We’d had one ultrasound and were anxiously awaiting the next one as the first didn’t tell us much other than that the baby was, indeed, in there and alive. 

With our last pregnancy, we prayed for 40 weeks, then pleaded for even 34, and then craved just the 24 weeks that would give our baby viability status. With this one, I was already praying that God would just get it over with. Get us through the fear and unknown. Make it go fast. And, please, let there be a healthy baby at the end. I didn’t want to be in a perpetual state of waiting for something to go wrong. 

It’s 16 weeks. I’m emotional. I’m anxious. And I’m in the middle of making the 342 calls with my doctor’s office/health insurance provider/specialty pharmacy to coordinate my Makena (hydroxyprogesterone caproate) Injections that will “lower the risk of having another preterm baby” because I just. Can’t. Do it. Again. 

Things were fine. But I needed to know things were going to stay fine. 

In the stats: 
Gestational Age: 16 weeks
Doctor’s Appointments: 3
Ultrasounds: 1

And Now We Start Over

I always knew I was a little bit of a hippie. When it came to my role as a mother, my hippie self wanted to love being pregnant and breastfeed my many babies for as long as I could.

And then I hated being pregnant. 

And then I got pregnant again.

And I was still breastfeeding that first baby.

2.13.19

“I’m mourning the loss of this summer. I thought I wouldn’t be breastfeeding or pregnant. I thought I’d have my body to myself...”

I always knew I was a little bit of a hippie. When it came to my role as a mother, my hippie self wanted to love being pregnant and breastfeed my many babies for as long as I could.

And then I hated being pregnant. 

And then I got pregnant again.

And I was still breastfeeding that first baby.

Oaklee was almost 20 months old, and I was still pretty comfortably breastfeeding her. I had planned to breastfeed for a year, but I hoped our breastfeeding journey might extend through a second flu season, pending a child-led weaning approach. As my new reality – my second pregnancy – was beginning to sink in, I realized that not only was this journey with Oaklee naturally coming to an end, I needed it to come to an end if I wanted any time to myself. 

It never occurred to me that I would enter a stage of life where I would share my body with my babies for, literally, years. Oaklee was conceived in December of 2016. It was February of 2019, and my body had been sustaining a baby from either the inside or the outside (or both) for 26 months already, with no obvious end in sight. 

I had imagined that the summer of 2019 would be a break for me – no pressure to stay pregnant, no tether to my breastfeeding baby – and that I might be able to get out and do things I’d otherwise been unable to do the past two years. This surprise pregnancy quickly dampened that dream. Until this second baby was born, I would be too scared to travel or partake in various activities for fear of the whole gamut of pregnancy-related issues I could face (and have faced in the past).

I had entered the pressure-to-stay-pregnant phase that would one day end with a transition into the tether-to-my-breastfeeding-baby phase. I was starting all over again.

Kevin and I knew our family was not complete after our daughter was born. We knew there was more for us. Naturally, that means I knew I would “start all over” one day. I knew I would be pregnant again. I knew I would breastfeed again. I think I just imagined that “one day” would be after a little rest and relaxation for this mama’s body, because now my child-led weaning approach to my breastfeeding baby was being led by the child within me. 

In the stats: 
Gestational Age: 5 weeks, 1 day

There Goes the Mojo

It’s the morning of Wednesday, February 6, just two days after I made my appointment to meet a new lady doctor, and my period is now three days late. I’ve been late before – it’s not the craziest thing to happen – but this time I’m feeling anxious because of all the conversations we’d been having about the prep work that needed to be done before considering getting pregnant again. 

2.6.19

“I’ve panicked. I’ve cried. I’ve laughed. I’m shocked. I’m confused. I’m scared. This was not planned. We were at the stage where the plan was to get some things in order… and then make a plan.”

It’s the morning of Wednesday, February 6, just two days after I made my appointment to meet a new lady doctor, and my period is now three days late. I’ve been late before – it’s not the craziest thing to happen – but this time I’m feeling anxious because of all the conversations we’d been having about the prep work that needed to be done before considering getting pregnant again. 

As my husband gets ready to leave for work, I joke about taking a pregnancy test, because it still seemed so impossible that I might actually be pregnant. He tells me not to take one without him there, but when he leaves, I check the expiration dates on the two pregnancy tests I’ve had stored in the drawer upstairs for two years now. Expired. 

I’m looking up online what an expired pregnancy test can do for me. 

The internet is telling me that the results from my expired pregnancy test will most likely be negative, whether it should be or not. 

Test #1 – positive.

Test #2 – positive.

Mandi – panicking.

I text my husband to let him know my daughter and I are going to head to the store to pick up some pregnancy tests… just in case. He encourages me to wait, and just take the ones we have at home before buying more. I then inform him, via text, “I did. They’re positive.”

Mandi – crying. 

I’m a planner. Something this huge, catching me off guard, really takes my mojo out of me. So to keep from being a complete basket case while taking care of my daughter, I keep us busy with errands all day. We end our busy day at my former doctor’s office, requesting them to send all of my records to the new doctor I’ve not yet met – the one who now holds the basket I’m putting all of my eggs into. 

Mandi – laughing. 

I’m shocked. I’m confused. I’m scared.

I guess it’s time for a new plan.

In the stats: 
Gestational Age: 4 weeks, 1 day