Kelsey’s Story, Part One: Before We Met

Kesley’s story, unlike her older brother’s, starts about three weeks prior to her birthdate.  I was headed to have a final ultrasound on April 25th, to “check the growth” of our baby.  I put “check the growth” in quotations because it turns out that a 32 week ultrasound (that I had a week late because of scheduling conflicts) is unusual.  An obstetrician from an imaging center I went to, but not my regular doctor, recommended the ultrasound because of my “high risk” pregnancy.  I was considered “high risk” because we used IVF to conceive Kelsey.

Dave and I were focused on fifty other things on our way to the ultrasound.  I was feeling chipper and excited to see our baby one last time before her birthday, and Dave was concerned about a pressing matter at work.  Everything with this pregnancy had happened without challenges, just like it was with Kelsey’s brother, Ben…until April 25th.

The technician performing the ultrasound was quiet as the scan started.  I had no concerns, whatsoever, even as her silence continued.  After awhile, I said, rather flippantly, “Is everything ok?” As if there could be something wrong…we knew everything there was to know about this baby (more on that later)…and we knew she was very healthy.  I’m not really sure the exact words the technician used, but I began to know that everything was not, in fact, “ok.” I believe she, by the book, told us she would need to have the doctor come and speak to us.  But I also vaguely remember her explaining that a ventricle in her brain was enlarged.  Disbelief is an understatement.  There truly was absolutely no way that something could be wrong with another baby.

The doctor (still not mine) came in after what seemed like forever.  I was into the ugly cry by then, but it was an ugly cry coupled with certain disbelief.  I was positive this was a mistake.  A mistake I didn’t want to deal with, but one that would be over soon and we could go back to having our healthy baby girl.  The doctor seemed more concerned about covering her butt than consoling us or explaining what they saw.  She was also passing the buck.  They wanted us to wait, overnight, and go to a maternal-fetal medicine office down the street in the morning.  “It’s probably just our poor machines! she said.” “They have better machines and radiologists down the street! It’ll be better to have another scan there.”  Nothing about what an enlarged ventricle could mean, how it happens, or what to expect…

We asked to speak to a mid-wife.  I have been seeing a mid-wife since I was eighteen, and I so appreciate their bedside manner.  At this point we really needed bed-side manner. The midwife calmed some fears and then brought in another OB.  The OB really led us down a path of “it was a mistake.”  She claimed to not even know how much an enlarged ventricle had to be, to be a problem.  We left confused and scared, but hopeful.

The waiting that night, the next morning, and in the waiting room of the clinic where we would have the ultrasound took forever.  I could tell Dave was very nervous.  I, on the other hand, was unusually  optimistic that it was all a big mistake due to an inexperienced ultrasound tech (that I would be complaining about later!).  I was wrong.

This second ultrasound technician also took what seemed like forever to say anything.  It wasn’t until we asked, that she shared that the ventricles were pretty large…especially the right one.  I asked what that meant and she was adamant that she couldn’t say…only the doctor could.  I demanded a doctor immediately.  She wanted to finish the scan.  I was sobbing…screaming…flailing.  After some curse words, she gave up and went to get the doctor.

In the fifteen minutes it took for a doctor to come in, there was crying.  Crying like I’ve never done before.  Screaming like I’ve never done.  Sadness like I had never felt.  This was going to be our healthy baby.  We worked so hard, for so long, and spent so much money to have a healthy baby.  And the dream was crushed again.

Dave was a ROCK.  He remained calm.  He comforted me.  He told me it would be alright.  I continued “losing it” while he just hugged me, rubbed my back and spoke softly.  I wanted to give up.  I wanted the baby to have Menkes, like Ben, instead.  At least I knew what that was.  I didn’t want to learn a new problem.  Didn’t want the doctors.  Didn’t want the therapy.  Didn’t…want…to.

Finally the doctor came in and explained hydrocephalus.  Both ventricles in her brain, where fluid flows through, were enlarged but the right was significantly worse.  It was “water on the brain.” The doctor gave only worse case scenarios.  I cried.  Dave asked about the best possible outcomes.  I rocked.  Dave got the doctor to say that the baby could “just” have developmental delays…and he hung his hat on that.  I shook my head.  I didn’t want either scenario.  I wanted healthy.    The baby would likely have a shunt placed in her head, shortly after birth, to drain the fluid and relieve the pressure on her brain.  We would wait…have more tests…let the baby grow closer to full-term.

The next few weeks were awful.  Lots of time to think and worry about the worst-case scenarios.  We are not internet researchers when it comes to our kids and the conditions that affect them.  We did that initially with Ben and it only made us worry more.  We have always learned about their conditions from them…one day at a time.  It’s the only way to stay hopeful, in my opinion…by being slightly ignorant.  During these weeks, I took a leave of absence.  There was no way to work.  We went to the beach to “get away.”  It helped but only for brief moments when we would forget what we were getting away from.

Finally on May 9th, we received a terrible phone call that the results from an MRI showed that this was probably, per the OB from maternal-fetal medicine who only gave the worst case scenarios, a worst-case scenario, indeed.  A hemorrhage had occurred in our baby’s brain, in addition to the hydrocephalus.  I would be sent to Johns Hopkins to have the baby, likely the next day, and to stand by for phone calls to have that arranged.

Dave and I sat, crying, in silence for over an hour.  I remember “How I Met Your Mother”  was on TV, but muted.  We just stared and cried.  After we couldn’t sit in the house anymore, we decided to drive to The Grotto at Mt. St. Mary’s College in Emmitsburg, MD.  It’s a very serene and spiritual place, and one that Dave visited in the early days of finding out about Ben’s condition.  After aimlessly wandering and feeling like nothing was the right thing to do after you find out that your child will likely be severely disabled and delivered tomorrow, we left.  I couldn’t find it in myself to pray much at all during these uncertain weeks.  My faith has been greatly tested and I’m still having trouble finding it again.

We were driving home when we got a call from who would be our OB at Hopkins.  She wanted us to come in to have blood tests and to get prepped for surgery and delivery in the morning.  So we headed to Baltimore to receive even less encouragement about our situation.  In the morning, a procedure would be done in which they would test to see if Kelsey had some sort of blood condition that caused the hemorrhage.  I would be awake but numb from the waist down.  If she had the condition, they would do a blood transfusion before an emergency c-section.  If she didn’t, well, we wouldn’t have answers about the bleed, but we would know she could be delivered safely.

Before going home, we were to meet with Dr. Ahn, who would be Kelsey’s neurosurgeon after birth.   Terrified, we drove to meet him.  Immediately his presence calmed us.  He was kind, quiet and compassionate.  I was balling from the minute he started talking and sharing the films from the MRI.  And, because of that, I missed a lot of what he was telling us but only focused on the words “surgery; bleeding; shunt; NICU; pressure on the brain.”  Dave, as strong as ever, asked all the right questions and listened very carefully, only adding a bit of his never-dying optimism to what the doctor was telling us.  The doctor nodded and said a lot of “we’ll have to see,” but Dave gleaned that this wasn’t, in fact, the worst-case scenario.  That Kesley might…be alright.

We went home, Dave now on Cloud 7 (not quite 9, but not 1 either).  I remained pessimistic, sullen and scared…until he started to convince me of what the doctor had said.  Kelsey might be alright…

2 thoughts on “Kelsey’s Story, Part One: Before We Met

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