A Story

I was 18 weeks pregnant with Baby Shark when we went in for an ultrasound.  We found out the gender when I was pregnant with Rembot, but I wanted to be surprised this time around.  Much to Jack’s dismay.  All I needed to do, I told myself, was to hold out for the 30 minute ultrasound.  Then I could go home and be satisfied in knowing that there was no way I could find out the gender.  If I could hold out.

I laid on the table and watched the screen, eager to see my baby.  The ultrasound went longer than planned, and I tried not to notice each time the ultrasound tech frowned.  She’s frowning.  She’s making ‘hmm’ noises. Finally she told us that something looked amiss in the kidney area.  A cyst, perhaps.  The doctor wrote us an order for an appointment with the higher powered ultrasound machines at the hospital.

I figured that it was a glitch, a fluke, a mistake.  I lasted the first ultrasound without changing my mind about finding the gender.  I could hold out for one more appointment.  I could.

If only that was our biggest problem.

Something was wrong, but because the baby was still so tiny, it was hard to say what.  Come back in two weeks, they said.  I was convinced that we’d go, they’d tell us that whatever it was had cleared up, the baby’s perfect, and that would be it.

More frowns and concerned looks during the ultrasound.  I felt no comfort when the specialists called in other specialists to see if they could help decipher what was wrong.  I laid uncomfortably flat on my back while doctors hovered next to me, staring at the screen.  I finally asked to sit up so I could talk to them face-to-face.

No one could offer me anything concrete, but they could tell me that there was a cyst measuring half an inch long.  The baby was only six inches long, so comparatively?  Huge.  They started giving me theories.  It could be a kidney malfunction.  The baby could grow out of it.

Or, the doctor said.  Or?

It’s very possible that your baby has Down Syndrome.

They asked if we had done the 1st Trimester screening for Down Syndrome.  We hadn’t.  They told us the window was closing for an amniocentesis.  Get the amnio, they said.  Find out if the baby has Down Syndrome, they said, and if the baby does…

Not a chance in hell are we terminating a pregnancy.

I cried the entire way home.  I cried on and off for most of the day.  I prayed.  I cried while I prayed.  We took an hour drive to the Container Store.  I cried while filling my shopping cart with stuff we didn’t need.  I cried after, at lunch, feeding Rembot pieces of my sandwich.

I prayed that our baby would be fine.  And then I told myself that I would be an awesome mother to a special needs baby.  But I hoped that I wouldn’t need to be.

We went into the Maternal-Fetal Medicine offices at Yale for ultrasounds at every three weeks for the rest of my pregnancy.  We always brought Rembot with us, so we could see the baby as a family.  The waiting room had snacks for all the pregnant mothers.  Rembot looked forward to stealing my graham crackers.  Sometimes women cried in the waiting room, while the men they were with looked defeated and embraced them.  Sometimes women smiled and cooed over Rembot, who never failed to charm anyone who paid her attention.  Visits to Yale always made me extra grateful for Rembot.  Snack stealer or not.

As time went on, it looked less like Down Syndrome and more like her kidney failing.  But still, no one could give me concrete answers.  At each ultrasound, I went in expecting some firm answer on what the problem was.  At each ultrasound, the results were inconclusive, and I left frustrated.

Finally, Baby Shark was born.  Perfect, beautiful, long and skinny, just like her sister.  Our first day in the hospital, I was wheeled down to Radiology so they could ultrasound her kidneys.  They laid her bare in a cold bassinet, pushing the ultrasound wand into her abdomen and on her back.  She wailed.  I cried along with her.  A few hours later, a doctor wheeled a machine into my room.  Another ultrasound.  A concern about a dimple in her back.  More crying.  From both of us.

We take her home, and we’re a family of four.  More tests.  More ultrasounds.  A procedure requiring anesthesia.  More crying.

She has a horseshoe kidney.  Her kidneys are fused together, and the left one isn’t functioning properly.  There’s a severe amount of swelling.  It looks like her left kidney has lost most of its function. The pediatric urologist instructed me to put my hands on her abdomen.  Could I feel that?

Yes.  I could feel her blown up kidney just by touching her stomach.

She needs surgery.  Something about cutting open her kidney, draining it of all of the backed-up fluid, putting a stent in her ureter, and attaching her ureter to a different section of the kidney.  I think.  Doesn’t matter how many times the (absolutely wonderful) urologist drew me a diagram or spelled it out.  I just concentrated on not crying in front of anyone.  Jack retained all of the important information.

I packed a suitcase, kissed Rembot goodbye, and Jack, Baby Shark, and I headed to the hospital.  I sat in the exam room, holding her, while the resident anesthesiologist, with obviously no shred of human emotion or bedside manner, nonchalantly mentioned that the epidural our baby would need could result in her death.

I let out a few choice words when she left the room.  Jack was more understanding.  I, in that moment, could have easily slapped her without a second thought.

The doctors and nurses came and watched as we hugged our teeny baby, only six months old.  And then they took her to the operating room, leaving us to deal with a whirlwind of pain.

We grabbed breakfast, and set up shop in the cafeteria.  Pulled my laptop out, and sipped my tea.  We had eight hours before surgery would be over.  Jack had some bottled up nervous energy, and decided to go for a walk.  We kept our cell phones on, and I tried to distract myself with the internet, while I offered up a continuous scroll of endless, silent prayers for my baby.

Two hours in, my cell phone rings.  It’s the urologist.  And he’s calling me six hours prematurely.

Roo, we might not be able to do this surgery. I silenced my emotions to focus on what he was saying.  Her ureter is so fragile.  I don’t know if it can handle the stent.  I don’t think this is going to work out.  There was no way to know through the ultrasounds… We could… He listed other options.  All resulted in a fast patch now, but more major surgery down the line.  I wished Jack was there to process it all with me, but he wasn’t nearby, and I couldn’t call him because I was on the phone with the doctor.

“Please,” I said.  “I trust you completely.  But if there’s a way that this surgery could work, I want nothing more than it to be resolved today.  But I trust you.  Whatever you think is best.”  I hung up, and I could feel no hope, no promise, only despair.  I called Jack and told him to rush back.  Told him what the doctor said, or at least.. what I thought the doctor said.  We called my mom.  We called my pastor.  And then I needed to be alone.

The only quiet place in a hospital for a non-patient is a chapel.  I sat in the back, and cried.  And cried.  God, if You could please… just make a way.  Make a way for this to work.

I’m not sure how we spent the next few hours.  Texting family and friends, maybe.  Playing around on the internet, maybe.  Begging God to be with our baby.

Our pastor came to the hospital and sat with us, talked with us, prayed with us.  He’s more family than clergy – Jack’s known him since he was a little kid.  The first two years of our marriage, we lived in an in-law apartment off their house.  They’re a beloved second set of parents to us.

The doctor found us in the waiting room.  Surgery was over.  He sighed.

I’m not going to lie to you.  Surgery was tough.  It was very tough.  We weren’t going to go through with the original procedure.  But, I looked at the ureter again… and I thought.. maybe it IS strong enough to handle the stent.  So we did it.  And it worked perfectly.  I consider the surgery to be very successful.

Jack shook his hand.  Our pastor stood up, shook his hand, and thanked him for his good work.  It took everything within me to not hug him, so I sat politely, hands in my lap, and smiled.  A nurse came to get us.

She wants her mommy.

She was in Recovery, lying in a hospital crib, screaming.  About eleven wires and tubes attached to her.  I sat in the rocking chair, they handed her to me, and I held her, nursed her, and kissed her wee little face about a million times.  I had never been so thankful or grateful.  She was okay.  The surgery went well.  Thank you, God.  And thank you, Brave Doctor.  Thank you, Kind Nurses.  Thank you, Soul-less Anesthesiologist.

I stayed in the hospital.  Jack went home to take care of Rembot.  We were in the hospital for three more days.  It was excruciating.  Machines beeping, babies crying, blood.  Teams of doctors marching in like the A-team at five in the morning.  Shining flashlights on her.  Examining incisions.  She was in pain.  She was uncomfortable.  I tried catching catnaps on the roll-away cot, but my attempts proved to be futile.

Tired, in pain, but still showing Mommy some love.

Each day they removed a few more tubes and wires.  By time-to-go-home day, my sweet baby was doing this:

This smile makes me cry. :)

Six weeks later, there was a quick, follow-up out patient procedure.  And another six weeks after that, an ultrasound.  Come back in six months for an ultrasound.  We’ll see how she’s doing.

That ultrasound was today.

We don’t have to go back for another six months.  But her wonderful urologist gave us good news.  The swelling has gone down.  Everything looks great.  We couldn’t have asked for a better outcome.

I am so grateful.

♥