Month: June 2020

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

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

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

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