A Dad's Perspective

by Jordan and Brad 8:46 AM 14 comments

I don’t want to just go back over everything that Jordan already said, but I felt like I could give a little bit of a different perspective on everything.

Jordan’s pregnancy with Jack was like a dream.  I was probably too young and stupid to even know what to worry about, but it flew by without incident and I completely took it for granted.  Maybe partially because of that, the miscarriages hit hard.  It’s inexplicable how this little person you never even knew can imprint itself on your heart.  

It was quite an understatement for Jordan to say that the miscarriages were hard on her body.  Because of her blood overclotting disorders, she has to be on blood thinner shots daily from the moment she finds out she is pregnant.  For starters, the thinning causes bruises all over her body and particularly at the injection sites in her belly.  Every time I go with her to an appointment and we get a new nurse or doctor, I’m afraid I’ll be arrested for domestic abuse.  She literally looks beaten.  When Jordan had the natural miscarriage, she was on these shots and they caused or contributed to internal hemorrhaging and she lost a ton of blood.  When she finally let me take her to the ER, she was ghost white and I was terrified that I might lose her.

So for me, it was much more than the fear of losing another baby that made me hesitant to try for a second child for a third time.  At that point, I figured that we should just count our blessings for our little family of three.  But, after a lot of thoughtful discussion and prayer, we decided we would try again.  It is probably content for another blog altogether, but as I’m sure many of you know, battling infertility is a stressful and difficult struggle all its own.  Ultimately, with the assistance of fertility medication, we were able to conceive again.  It was a difficult pregnancy for all of us with Mama on bed rest and forced to miss out on family vacations, sporting events, and lots of things that moms and wives are supposed to be there for.  For Jordan and I, the constantly looming specter of losing another child haunted us every day.

I don’t remember much about Liliana’s birthday.  We were overjoyed to have made it to the finish line.  We couldn’t believe that this little baby had defied all the odds, even after we had been told she was a miscarriage and lost a twin.  I was happily sipping my morning coffee and joking with Jordan one moment, and the next I was spinning the steering wheel frantically trying to regain control, and the next I was awoken by a group of firefighters using the jaws of life to cut and pry the door off of my car in order to extract me. The first things I remember asking them were where Jordan was and how was the baby.  They assured me that they were alright, and I only recall flashes of pulling me from the vehicle and the ensuing trip to the ER.  Once there, the flurry of activity and my addled mind were dizzying, both literally and figuratively.  Strapped to a gurney covered in bruises, with body full of broken bones and a tube hanging out of my chest, I had only a brief instant as they wheeled Jordan past on her gurney to say goodbye and good luck to my wife as they hurried her off for an emergency c-section. 

It is only by the grace of God, that we are all still here and our precious Liliana is a happy, healthy, rambunctious, and very spirited 20 month old.

I never dreamed that we would endure anything like that again.  I thought that without fertility treatments, we would be the Boykin four forever.  Surprise!  When Jordan told me we were expecting again, I was thrilled, stunned, and petrified.  As the idea of it set in, I reasoned that there was no way that we would ever go through anything as trying and traumatic as the last pregnancy and that this would definitely be the last one, so I should take it all in and enjoy it as much as possible.  Fat chance.  Almost from the very beginning, there were problems. The subchorionic hematoma was the first, and of course I thought we would lose the baby again.  But she hung in there, and I thought we’d made it through the trials and would cruise to the end.  Think again.  I knew something was wrong at the anatomy scan.  Our sonographer is a friend and she is usually the first to share in our happiness.  She wasn’t laughing and joking or smiling with us as she did the scan, and when we were awkwardly ushered to a room to await the doctor’s review of the scan, I knew it was bad news.  I’m embarrassed to say now what I feared as “the worst”.  I’d give anything to have a happy, healthy child with special needs right now.

When the doctor told us it was hydrocephalus, I recognized the word’s meaning from it Latin roots, but I had no idea about the condition or the implications.  Again, it’s probably fodder for another type of blog altogether, but I went through some dark times after the diagnosis.  It was mostly selfish pity.  I wanted to know what I had done to deserve what we had been through over the last two years.  I have my many faults, but I’m generally a good guy.  Most people seem to like me.  I’m a hard worker and I’m extremely loyal to my family and friends.  Why isn’t this happening to some a-hole?  Surely that guy who cut me off on the way to work deserves this more than we do.  I wished it on everybody but me.  I tried my best not to feel any of it.  I drank.  A lot.  The state of Kentucky should give me some kind of medal.  I’d like to expand on that another time, but let it suffice to say for now that I haven’t been drunk in nearly two months.

As Jordan said, we never felt quite right about the coming delivery.  That’s not to disparage any of the doctors, except for Dr. Pearson, the neurosurgeon.  I think Jordan was being kind, but I don’t feel bad calling him out by name.  He should be held accountable for how he treats patients.  He may be a skilled neurosurgeon and may even be a great guy, but he treated us like garbage and there was no excuse for it.  He traumatized and belittled us.  There’s a way to present your professional opinion that is respectful and considerate of your patients.  He must’ve missed that class in med school to groom one of his cats.  Oh yeah, the man raises show cats.  And he allows that fact to be posted on his online profile as if he’s not ashamed of it.  That alone should’ve set off the alarms.

 

We investigated changing hospitals and looking for a new neurosurgeon.  We looked at moving to DFW or at least sending Jordan to stay there with her parents in order to be able to receive better care.  The neurosurgeons we contacted had month-long lead times to get in, and we would have to replace our OB and MFM as well, and the whole process just seemed too daunting logistically to add to our overflowing plate of stress.

Then we received the CDH diagnosis.  What seemed like just one more devastating blow in a long line of soul-crushing news, I can only now see as nothing less than a Godly intervention.  Seasoned doctors and ultrasound techs with years of experience diagnosing fetal conditions would not just mistakenly diagnose this serious life-threatening condition.  Because Sacred Heart lacks the facilities to handle a CDH, we were transferred to Shands Children’s in Gainesville (five hours away from home).  Before we even left that first visit, Jordan and I only needed to exchange a look to tell each other how impressed we were by the people and the hospital and how much more at peace we were there.  The decision had been made for us.  All the stress of the logistics was gone and we would deliver at Shands.  The nurses even put us in contact with Ronald McDonald house, so we would have a place to stay.  At this point, it’s hard not to look at this “coincidence” and wonder if Juliet would even be alive right now had the doctors not misdiagnosed the CDH and referred us to Shands.  Again, I don’t say any of this to run down any other hospital, but I just can’t imagine that they have the resources to have been able to give her the care she needed and still needs.

The day of the delivery, I was a mess.  My wife will take great joy at this point in telling how I turned the wrong way down a one-way street on our half-mile drive to the hospital.  One of her favorite pastimes is criticizing my driving.  I couldn’t let her see me crack though.  I felt the weight of all of it trying to be her strength and feign my own. 

At the hospital, it was an eternity before the nurses finally called me to the OR.  It’s a bizarre situation looking down at your beautiful wife’s face and then looking over at her insides exposed.  I could tell that the doctors were struggling to get the baby out, but I kept a smile on my face and kept telling her how great she was doing.  We laughed with the anesthesiologists and talked about what we’d have for lunch. Jordan had now been without food almost 12 hours.  I think that 12 minutes may have been the previous record during this pregnancy.  For most of the pregnancy, her nightstand looked like a junk food truck crashed through the bedroom wall.

Due to the extreme enlargement of Juliet’s head, it took quite an effort to get her out.  When they finally pulled her from the womb, she was completely blue, and the size of her head was, frankly, shocking.  I knew to expect some enlargement, but this was more than I’d ever imagined.  She didn’t cry at all, and they immediately took her to a table on the other side of the room and a team of doctors surrounded her, obscuring my view.  Jordan asked me why she wasn’t crying, and my heart broke again, but I managed to tell her that it was ok, they were just working on her.  I had never felt such relief as when I heard one of the doctors exclaim, “We have a pink baby!” I had never felt such a sense of relief.  I was overjoyed.

When I was finally able to go over and see her, it was a flood of emotion.  She was beautiful, big head and all.  I was so elated that she had survived her birth and so incredibly heartbroken for what I knew she would have to endure now. 

After getting Jordan situated in her recovery, the nurses eventually informed me that I could come to the NICU to see little Juliet.  I sat in a chair next to her in her bassinet.  I looked down at my baby girl with seemingly innumerable tubes, probes, and wires, covering and protruding from her tiny body.  Her little hands and feet were dotted with needle sticks from failed IV attempts.  I sobbed.  With Jordan away in her recovery room, I finally had a chance to let myself break.  And I did.  I had cried about the situation before, but I was crying for me.  I was upset about why all of this was happening to me, and why I was going through all of this.  This time, I wept for my daughter.  She was finally much more than black and white images on an ultrasound screen.  She wasn’t a test or challenge to overcome anymore.  She was my beautiful, innocent, perfect little girl now.  And she hadn’t done anything to deserve this.  I would’ve taken it all on myself in an instant if I could have taken it away from her.  I still would.

I don’t really know how to close this.  I could write a book – maybe someday I will.  At this point, all we can do is pray and be there for her.  We are confident that her team of doctors is as good as any in the world, and they are fighting for her as much as she is and we are.

Our most sincere and humble thanks to all of you who have held us in your thoughts and prayers. We can hardly fathom the unbelievable outpouring of love and support that we have received. We couldn’t do this without you.  Please continue to lift us up.  I don’t know how I could ever express enough gratitude to those of you who have supported us financially.  It is particularly difficult for me, as I’ve always been proud to provide for my family, but we are overwhelmed right now.  It is my hope and prayer that we can get through the most difficult times and use our experiences and resources to help others in need. 

Thank you all.

These people are my strength and my whole world.