What It’s Like to Carry a Baby Who Might Die

20 weeks

I spent 20 weeks being sick. My body aching and denying comfort. Constantly running to the bathroom to throw up.

I threw up everything. I wish I was exaggerating, but even water made me sick. I would brush my teeth to clean my mouth after vomiting only to be sick even more from the toothpaste. Kind of hard to ever feel clean.

20 weeks of shaking from hunger, thirst, and weakness. From crying and dry-heaving. Embarrassment didn’t keep me at home. My sprint to the closest restroom did. And when I did need to leave the house, I improvised. There’s a dumpster behind a Verizon power building near the Oceanfront that I visited more than once. Tired of the bile, I also visited the hospital for IV’s and Zofran more than once… a week.

I thought about how it was supposed to be easier by now. I made it out of the first trimester. That alone deserved a parade, some confetti, a cupcake or even just some bland toast that I could actually eat. Something that let me celebrate that I didn’t have another miscarriage statistic to my name. The first trimester was supposed to be the “worry trimester.” The second was supposed to be the “easy trimester” and the third was going to be the “rush to get everything ready” one. Or so I thought.

I took this time for granted, wishing it would be over. I couldn’t wait to get to the end of being pregnant -or more realistically, the end of being sick.

I spent 20 weeks being naïve, wishing this would be over, and thinking about how tough this was… for me.

My workplace was flexible with me. It helped that I was already working under the Director of Human Resources at a local company that was pretty laid back in structure. The HR Director understood through her own pregnancy struggles and was empathic to my situation.

Each day of work had the motto of “Let’s just see how today goes.” I was starting to think that I might never actually finish a full day and even told my Boss that it was probably in the Company’s best interest to find someone more reliable for the job. Astonishingly, they were all in my corner, and even the VP’s were giving me the freedom to do whatever I thought was best. Sometimes I cried because they were being so nice to me instead of just thinking about the bottom line. Gratitude mixed with hormones.

20 weeks brought me to the halfway point. …And to the argument about the glass being half-full or half-empty. I was constantly reminded of how much more I had to endure and then giving myself pep talks about actually making it this far. It was 10 weeks longer into a pregnancy than I had ever gone.

November 22

The gender-ultrasound appointment was finally here. I couldn’t wait to call my child by his or her name! There was a pool going on at work the night before and I was interested in seeing which side was correct. We had some fun during the last hour by trying all the old wives tale gender predictors Google had to offer. My husband and I joked about how much we hoped our child wasn’t going to be modest –the only time a parent wishes that.

After driving to the Naval Hospital and enduring the hunt for a parking space, we finally gave my name at the reception desk and were brought back for the radiologist to declare our child’s gender. We were so excited about the day my blood pressure reading was even higher than normal!

You know how on television shows, they squirt that goop on the actress and her next line is typically, “Oh, that’s cold!” Well, it was actually quite warm. Thank you, modern hospitals with your “goop” warmers! It seems strange, but that moment of something going my way reminded me that I actually hadn’t thrown up that morning.

The last time I went that long without vomiting had been days before taking a pregnancy test. Things were taking longer than normal, but we immediately started laughing about how, of course, our child was going to be difficult today. When the technician started talking very awkwardly and in broken sentences, the excitement switched to panic.

Her supervisor came in and went through the same steps. More goop, more waiting, more awkward glances, before telling us that there was a problem and we would need to be seen by one of the high risk Doctors. “A Problem.” That’s all we were told and all we would be told for hours.

Eyes widened, we tried not to get ahead of ourselves in thinking the worst. Tried. We really had no idea what to think. And we started praying in a different direction. Please let me stop throwing up turned into please let us find out if we’re having a boy or girl today (instead of having to be sent home to try again another time) which led to please let everything be okay.

I was already seeing high risk doctors because of my miscarriage history. I was dumbfounded. Shocked that we made it out of the first trimester only to have more problems. I don’t even know how we walked to the elevators to go up to the 5^th floor. I don’t even know how we waited the hours in between that moment and the time they fit us in. Time became a blur.

The rudeness of the nursing staff did not unfortunately. We kept getting told we needed to wait in a different area. Ben spoke up and let them know that they needed to make up their minds and pick a spot for us and get us in so we could know what was happening. Once we did, the lack of communication and fitting us in last minute meant that we had to explain our side, wait for staff to call down to radiology to learn more, then come back to us again. Very hard to remain patient. Or calm. So many mental prayers were being said.

The nurse came in again, and told us with attitude that we were taking up their time. She then wanted to talk about all of her grandkids and how they were born, waving around the transducer as she talked … while we were still trying to figure out what was going on since no one had told us anything!

My shock had turned into, well, what’s the next level of shock? My own empathy had gone out the window because all I really wanted to do is to tell her to stop talking about her own kids and grandkids and let me know about mine! She used her ultrasound machine. This time we were able to see the image being received since the room had large flat-screen televisions mounted on the wall.

It was fuzzy, and not like your typical fuzzy sonogram. It was hard to make out an image among all the blacks and greys. Ms. Nurse-with-an-attitude said, “I’m just gonna push harder just so you know.” And that she did! Gripping the transducer with two hands, she threw her body into it, only taking a hand off to click a couple of keys on the computer to zoom or save images. Later on that night, bruises formed in the exact spots she pushed.

I shouted out to God in my head, saying if it means that I need to be sore to make everything okay, let it be.

My husband was there to hold me hand, letting me squeeze in those moments I needed it which was pretty much the entire time we were there. I forced myself not to let my eyes meet his gaze because I knew that would make the tears flow.

We still weren’t being told what the supposed “problem” might be, but the longer it wasn’t talked about, the more I feared the worst.

The Nurse finally let up and said that she was going to get the Doctor after all. This was the same Doctor she had been bashing throughout our time with her. Apparently she believed she was better at the machine so if anyone would know what was going on it was her, not him.

I didn’t want office drama; I wanted everything to be perfect with my baby.

The Dr. came in and was a balm to the room’s atmosphere. He was soft-spoken and kind, exactly what we needed in that moment. He gave his name, explained that radiology alerted him to the fact that there was a problem getting a clear image of our baby. He confirmed a healthy heartbeat and that he wanted to see for himself what he could find out.

For the first moment in hours, I could feel myself actually letting my breath out. My overthinking mind started thinking that it must be more of a technology problem than something with our child. He just confirmed a healthy heartbeat and that the problem was in viewing my baby. Surely it couldn’t have been as serious as we were thinking, right?

He was gentle in his attempts to get images, apologizing for the times he pressed in even harder on my skin (which were nothing compared to what I had just endured). After quite some time attempting various angles, I was able to clean up for a time when we could just talk.

The Problem

That’s when we were told something we weren’t expecting to hear when we woke up that morning: our tiny, 20-week old baby was in a Catch-22 situation.

The reason they were having trouble getting a clear image was because the amniotic fluid surrounding our baby was extremely low, a condition called oligohydramnios. Fluid is needed for ultrasound scans. Bones and tissues show up white on ultrasounds, while fluid is black. Without a lot of fluid, you can’t get an image that is clear to view legs, arms, organs, etc.

At the beginning of a pregnancy, amniotic fluid comes from the mother. After 14 weeks, it actually comes from a baby through a process where the baby swallows fluid and then more is made secreted through urine. Gross to really think about, but it’s all a natural, healthy way for a child to grow.

I learned so much that I had always just taken for granted. Like that because the amniotic fluid was low around our child, it showed our medical team that there was a “problem” with the way he or she was “recycling” it. There are many causes for low amniotic fluid. If it happens later in the pregnancy, there are several different things it can mean which are typically easily remedied. If this happens during the first or second trimesters, however, it is typically a sign of a birth defect.

We were told that there was most likely a problem with our baby’s kidneys. At 20 weeks, it can mean that kidneys aren’t there or haven’t developed properly, or that their urinary tract is blocked.

Still quite in shock, we inquired to know what we do next. I was put on immediate bedrest and told to drink lots of fluids myself, hoping that my hydration might somehow help. We asked as many questions as we could think of, which paled in comparison to the ones we actually thought of later on when we weren’t as shocked.

Can’t a kidney issue be fixed? Can’t they perform surgery once he or she is born? Or do a transplant? Aren’t people fine with only one? Can I donate mine?

At a later appointment, we were explained that there was a high chance that our little girl (yes-we found out later we were having a daughter) was missing both kidneys. And if no kidneys had formed, then a transplant wasn’t possible because they couldn’t attach healthy ones, let alone the difficulty of surgery on one so small. We learned then, and were reminded at every subsequent appointment that a lack of kidneys is fatal.

We came home from the appointment devastated and trying to process our news. Messages of inquiring family and friends were trying to find out if we were revealing our baby’s gender. Calls to each of our parents was made, as well as a voicemail message to my work sharing my bedrest status, but other than that we weren’t ready to talk with others right away.

Instead we left a small post on social media.

 

We weren’t ready to talk that day, but we have always known the power of prayer. We had no idea we would be meeting her face-to-face a mere 3 months later (2 months prior to her due date). Being on bedrest meant that I had more free time than I would have liked, but it allowed me to chronicle a little bit of what we went through on social media and the verses and song lyrics that gave us hope…

So I mention an amnioinfusion. I had never even heard of this previously. What they do is stick a long needle through your stomach to inject saline into an existing pocket of amniotic fluid. This was to serve a two-fold purpose. Adding additional fluid would allow the medical team to get a detailed ultrasound and finally confirm if there was an existence of kidneys. The saline also contained a blue dye that they wanted to use to see if there was a leak.

Two Doctors came in for the procedure with several Nurses and Corpsmen. Because my situation was so rare, they wanted a whole group to observe. As much as I wanted privacy, I thought it could be helpful and agreed. Over the next couple hours, they were kind enough to take cues to quietly walk out.

The procedure didn’t go as planned. They tried in 5 locations on my stomach. I still have the scars. One Doctor inserted the long needle into me and had to move it in and out as he tried desperately to place it into the tiny pockets of fluid he could find. Needles don’t usually bother me, but that was a lot to handle. I couldn’t hold in my emotions, and had tears running down my face during the 5th location attempt. Tears because it hurt, but mainly tears because it wasn’t working. The Doc decided it was time to stop and we set up an appointment for the next stop: a fetal MRI.

“Sometimes He calms the storm, and other times He calms His child.”

That last post. Fitting as 3 years later in March, I gave birth to our son, Jude.

There is so much more to be said, specifically about our Ashlyn Rose, but I’m not ready to write it out here just yet. Thank you for letting me share our journey.

And thank you to everyone who has been part of our journey with prayers, words of encouragement and love, and allowing us to talk about her. It means the world to us.