If you have stumbled across this blog, you are most likely hunting for information on micrognathia, Pierre Robin Sequence and/or other craniofacial defects.  Even more likely, you are a mother.  When my son was diagnosed with micrognathia (along with many other red flags) during my twentieth week of pregnancy, I began desperately searching for someone or something that could help me understand what was happening to my world.

I am so incredibly happy that you are here.  And I will hope I can be that someone.  That something.  For you.

This blog is a glimpse into the story of our son, Benjamin.  Today you will find him happy and healthy as in the photograph above, but we faced many struggles along the way.  And there are still some battles to be fought.  But more than anything, we found hope, courage, strength, laughter, and joy.

I invite you to experience our journey.  And to share yours as well.  Most recent posts are at the top of the page.  Scroll to the bottom to read the story from the beginning.

With Love,

Ben’s Mom

Please feel free to contact me at alilocker18@gmail.com.

 



All four seasons have passed since I first held Ben’s ultrasound picture in my hands.  Now this is the photograph that lies before me.  And it is true that a picture speaks a thousand words…

Ben is the spitting image of his dad.  I often find the two of them completely in sync with one another.  The obstacles Ben faced early on have taught him to be focused and aware.  He looks ahead at the world, observes it, and then, when he is ready, conquers it with full force.  He is our little man, wise beyond his years.

Jon is the backbone of this family.  The one in the background holding it altogether.  He lives every moment for his family, and puts Ben and I ahead of everything else.  Every day, he watches us, checks in, making sure we are alright.  His heart is content when he can pass by to find his son and wife happy and cared for.

And me.  With my boys.  On the other side of a tragedy….stronger, wiser, more mindful.  Upright and bold….I am part of the world again.

November 15 will mark the one year point since this story began.  And what an amazing journey it has been.  I want to thank each and every one of you for walking alongside us through it all.  There is not a thank you card I could write that would be able to express our gratitude for the love and support we have received.  Our thank you will be to live our best lives possible from here on out.  To live with the vigor, compassion, understanding, and love that you have all shown us.

This blog really could be considered a study in what is possible for our lives in just a year’s time.  Between November 2010 and November 2011, three lives evolved.  I don’t think any of us could have imagined the difference 12 short months would make.  And to think of all the years that will come and go in our lifetime.  What would happen if we lived every single one of them with no constraints on possibility?  If we didn’t need a tragedy to push us to our limits and instead were constantly seeking rediscovery?  If we could exploit uncertainty, instead of fearing it?  I, for one, intend to find out.

How do you even begin to wrap up 365 days of your life?  To quote one of my favorite John Mayer songs…”Pain throws your heart to the ground.  Love turns the whole thing around.  No, it won’t all go the way it should.  But I know the heart of life is good.”  One year in four sentences.

There will be more to tell I know.  While stability exists more than it did before, we still have minutes, hours, days, months, and years ahead.  And we will live them.  Fully.

 

We have been home for just over 4 weeks now and Benjamin is about to be 4 months old.  Now that I have had a chance to breathe and enter back into the world a bit, it seemed like the right time to stop and reflect a little. Thumbing through some of my journals tonight, I ran across two questions I had written down several years ago….”Is it possible to hold your hope down?  Can you stifle a heart of hope?”  Underneath these questions I had scratched the word, “no”. The page was dated January 2007.  I must have had something weighing deeply on my mind that day.  And in the end, I had concluded that hope prevails.  This is what I love about documenting your life and thoughts on paper…this question found me again today.  Over 4 years later, I get to ponder these questions again, at a new place in my life.

I looked at Ben today.  Studied him.  Watched his every move and examined every expression.  Because I got caught up in the wondering and the need to know the next piece of the puzzle.  I fell into the trap for a minute.  You see…I spent 3 months in a hospital listening to comments from doctors, nurses, geneticists, and the like.  Every one of them offering their 2 cents as to why Ben was born the way he was and why he is encountering the struggles that he is.  And in the end, nobody really knows.  It is just a waiting game, waiting to see how he grows and develops and figuring it out from there.  This is where hope resides for me right now.   The shakes of the head from doctors when Ben took some steps backwards, the speculations from geneticists….none of it interferes with my hope.  Every day I live a life of hope for Ben.  Hope that he will experience a happy and healthy life.  Hope that he will have the strength to beat the challenges he is facing…learn to eat, continue to hit his milestones.  And there is absolutely nothing that could happen that would ever keep this hope down.  We could hit another obstacle or take a turn for the worst…but hope would still be there.  And isn’t that the essence of hope?  That is how it is able to exist and breathe.  The absence of hope equates failure.  But the presence of hope can bring us miracles…whether tiny or towering.

So I will scratch the word “no” again today underneath the questions in my journal.  Ben will always know hope and he will always know that he is perfect.  He will know that he can be anything he wants to be.  So for his 4 month birthday, Jon and I made a video because, well….that’s what Jon and I do:)  And yes, it’s for Ben.  But more than that, it’s for anyone who has ever had a child that someone has shaken their head at, or a loved one who was told they weren’t good enough, or if you have ever experienced  that adversity yourself.   For anyone who let hope and love prevail…

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Sitting in Ben’s room.  Across the hallway, a new baby is being admitted.  It appears the little one is just fresh from surgery.  Mom carries her in as the nurse pushes the IV pole behind her.  Mom looks sad, scared.  She sits down and the game begins.  Two nurses in masks begin attaching more and more wires and tubes to her precious little girl.  Between the baby’s cries, the nurses ask mom all the proper “admission” questions.  Even the simplest of questions seem to stump the mom…she is so overwhelmed, trying to comfort her child and exhibit strength all at the same time.

Just outside Ben’s door, another nurse answers a phone call from a mom who cannot be in the ICC with her baby for a few days.  She reports the day’s stats to mom….40 mls at her 1pm feeding, tylenol given at 3pm because her incision was bothering her, surgeons came today to schedule her baby’s next surgery.  Her baby is sleeping comfortably for now.

This I have learned…a mother is the strongest human being on the face of the earth.  When you walk these hallways in the middle of the night, it is a mom that is scrunched up on the couch, sleeping just enough to be sure she can go on, but never enough that she would miss even a whimper coming from her baby’s crib.  It is a mom that puts on a coat of armor when her baby is being poked and prodded…doesn’t leave that baby’s side for a second.  It is a mom who pulls in every ounce of strength to hold back all the tears she wants to shed as she watches her child suffer.  It is a mom who would give up absolutely everything for the life and happiness of their child.  Would die for them.

A mom is in a whole other league.  I still can’t believe I am lucky enough to be in the club.  Its a powerful connections all of us moms feel on the floor of the ICC.  You get to know some better than others.  But there is a look we give one another when we pass by….we exchange strength and love and hope back and forth through our eyes and our smiles.

 

So now I know the reason why I was compelled to write this blog.  I guess I didn’t know its full purpose until now.  But, here, now, I am broken.  My heart aches beyond belief and the entire world seems to be on my shoulders.  Benjamin is back in the ICC.  He is struggling to breathe and he looks at me with his wide eyes and begs me to help him.  His whimpers a constant reminder of his battle for health and comfort.


I wonder when I, or my life, will resemble itself again.  I heard Wilco on the radio yesterday.  My favorite song playing and I couldn’t let my shoulders loosen themselves enough to relax and listen.  I walked out of the hospital this afternoon and saw, out of the corner of my eye, that the sky was gloriously filled with billowing clouds and warm after-storm sun.  But I couldn’t pause long enough to take it all in.  All my energy is consumed.  My head is filled with stress, my eyebrows in a constant slant of pain.  My body feels so heavy.  I hurt so badly for my son.  I hug him and kiss him as hard as I can and it never feels like enough.

And so it is…a song on the radio and taking in the day will have to wait.  My son is my life.  And now I know why this blog is here.  For me to re-read and to hold me accountable.  I must live up to all the words I have written up until now.  Talk of resilience and acceptance.  Of hope and positivity.  In the last few days, I have felt like letting all of that go.  Saying screw it…wanting to be angry, wanting to be resentful.  But turns out I am not allowing myself off the hook.  I tattooed my will and strength on a weblog.  So I can’t let myself down.  Ben is counting on me.


At .75mm per distraction with a turn and a half with the tool, this photo is 5.25mm worth of movement.


Today was Ben’s first Distraction.  That actual process is pretty un-dramatic.  The doctors come in with a socket looking tool and turn it one and a half times, twice a day.  This part will be a gradual process, but will be done within 7-10 days.

After Benjamin was born, there were so many things I was asked to do that were completely against all my instincts as a mother.  4 hours after he was born, I put him on a plane without me.  He spent his first two days of life without either of his parents.  When I arrived in Minneapolis, wires and tubes prevented me from holding him.  Days later, at only 5 days old,  I sent him into major surgery with a handful of doctors I had just met.  I was 34 years old and could barely deal.  And then there was Benjamin.  At hours old, days old, weeks old…he illustrated canvases of strength.

I will never forget the image of Benjamin before he left on his flight to Minneapolis.  The flight team insisted that he be rolled into my hospital room so that he and I could connect one more time before being separated.  We were both bound to beds and constrained in sedation.  But, damn, I know he felt me with him.  There was an energy there, radiating within the arm-lengths space that distanced us.  Mom and child.  He lay there, on his side, in his enclosed isolette. Barely 5 pounds, he had managed to wrap his arms around his wires, nuzzling them near his chest.  It was like he was saying, “Don’t worry, Mom.  I got this.”   And then they wheeled him out.  Gone again.

Two days later, Jon and I arrived in Minneapolis.  Getting admitted into a hospital for what you know is going to be a long stay is like arriving in a foreign country.  You struggle to get your bearings.  Everything is unfamiliar and you try to establish landmarks as you are being shuffled from one area to the next.  People speak in a language you don’t understand and you end up just nodding your head as you try to digest the information spinning toward you.  You are vulnerable in those first few hours…days really.  When I saw Ben for the first time in the NICU, all that insanity melted away.   I was with my son and that was all that mattered.  He was outweighed by all the equipment attached to him, masked by wires and tubes.  But I could see all of him.  And he was beautiful.  His hands told us so much about him.  His fingers were so long and lean.  He would squeeze our fingers and reach out toward us.  He knew mom and dad.

Watching doors labeled “surgery center” close behind your baby is surreal.  You know you are doing the right thing, yet you can’t believe you are letting your baby go into unknown territory without you.  When the ENTs emerged from the OR, I couldn’t catch my breath.  But then words from the doctor, “Rest up because Benjamin is going to be with you for a long time.”  I let my breath out and prepared for the next phase of the journey.

 

 

 

Two doctors saved Ben’s life the day he was born.  For privacy I will refer to them as Dr. T and Dr. N.  There were many other significant nurses and doctors along the way and there would be many more to come, but it was these two doctors that made sure Ben would have a fighting chance in this world.  They were the key players on the day of his birth.

Dr. T-From the moment I began envisioning the birth of my child, I pictured Dr. T being the one who would deliver me.  I met with her at my 7 week appointment and she shared in our excitement to become first-time parents.  Funny enough, though, out of what-feels-like-millions of further appointments I had, our schedules just never coincided.  I saw every other doctor in the practice on multiple occasions throughout the pregnancy, but could never get in with Dr. T. Until the end.  I was getting my blood drawn at the clinic on the Friday before Ben would be born and she walked by.  She knew my situation and was up-to-speed on my file.  “Come see me next week,”  she said.  “Be sure they schedule you to see me.  On Monday.”    Right then I knew that Dr. T would be the one in the delivery room with me.

I remember every second of the day Ben was born. I could write a book solely dedicated to this day. What I want to bring focus to, however, is the genuine care, kindness, and expertise of Dr. T. She was so in tune to me and to what needed to be done…this birth needed to be as low-stress and calm as humanly possible. And she knew I needed to see my son. Not 12 hours from now. Not 8 hours from now. As soon as possible. Ben and I had waited too long to meet. Even sharing the same body, we had been separated for too long. We were both struggling and it was time to be saved.

It was clear soon after the inducing process began that little Benjamin was not handling the contractions well. His heart rate was dropping significantly with each and every one. The call to do a c-section came soon thereafter. Would I have loved to have gone till my due date?…yes. Would I have preferred not to be induced?…yes. And would I have enjoyed experiencing a natural birth?…yes, probably. But there are many things I would have wished could have been so-called “status quo” with this pregnancy. But control is an illusion. As much as we would like to dictate and decide how things need to go, sometimes things play out exactly as they should when you can let go of what you have determined should be truth. I greatly appreciate Dr. T’s willingness to look at the whole picture, to really understand me and my son and to put things in motion in the way that she did.

The delivery took place in the OR. Not typical. But proximity to the NICU team and ENT surgeons was vital. There were many hands on deck, ready and waiting for the hand off of a new life that would need help. I was leaned over, eyes closed, legs hanging over the bed when the spinal tap went in. Dr. T grabbed my hand. Gentle and kind. We shared a moment of peace before the storm. Layed down, eyes closed…Jon was shipped in. I was too focused to look. I never even saw Jon(or anything for that matter) through the whole thing. I just listened to his voice and felt him stroke the top of my head. Small talk. Like ordinary, everyday chat is what we did. All the doctors disappeared and we waited to hear the sound of our son’s voice. Well, hoped for it…we didn’t know if he would make it. We didn’t know if he would be able to breathe once he joined us. We didn’t know.

And then, two cries. Two small cries with just a second in between. The cutest, most precious cries I have ever heard in my life. And then he was gone. Whisked away. From the hands of Dr. T into the arms of Dr. N.

Dr. N-Now here is a miracle. A full-blown, make-you-believe miracle. Still, to this day, Jon and I remain in awe of the chain of events that occurred. And you would think the miracle would be the fact that Dr. N was actually able to get Ben’s airway stable…because that was a feat! I was told later by the ENT in Minneapolis, that it was a wonder that Ben even survived because his airway was so incredibly small and blocked. But she and the team made it happen. And, yet, that isn’t even the real miracle.

Dr. N had done her residency at Children’s Hospital in Minneapolis several years prior. She had worked under Dr. James Sidman. Dr. Sidman just happens to be the founder of neo-natal jaw distraction. The man. He is the man who put this procedure on the map almost 12 years ago. THE man. He is a part of one of the only ENT practices in the nation to be conducting this type of work. He was the man who could help Ben. Within the hour, Dr. N contacted the ENTs in Minneapolis letting them know the severity of Ben’s micrognathia. Most doctors would have trached Ben…a 2-3 year finality. Things could have been much different had it not been for Dr. N being at that hospital at that moment. The wheels began to turn…plans for Ben to be flown up north were solidified. To be with the best. To get the best care possible. A miracle.

The last few weeks of the pregnancy were quite eventful.  I went from being high-risk to super high-risk.  Benjamin and I were just not working well together.  My blood pressure was through the roof, there were concerns of preeclampsia, Benjamin was measuring small…the list could go on.  Jon and I were at the doctor about every 3-4 days.  We quickly became the office “faves”.  We knew every single nurse and every doctor.  They joked about getting us our own parking space and VIP passes.  Every appointment held the same routine…ultrasound, non-stress test, examination.  And every visit would strike up a new concern about my health or Benjamin’s health.  Jon and I kept our humor and happiness with us.  We would laugh and joke through these appointments.  It was really the only way we knew to get through.  The downpour of bad news would have flooded us out otherwise.  There was eventually orders for bedrest and we were all just hanging on by a thread…waiting for the moment when we would have to make the call to proceed.  I knew things were going to go down well before my due date.  It was just a matter of when exactly.

My last of these cumbersome appointments was on Monday, March 14.  That was the day Benjamin and I said “enough is enough”.  This visit showed a slew of concerns and the risk for both Benjamin and I had now become way too high.  It was determined that I would be induced the following morning at 6am..

I spent the remainder of that day completely calming and centering myself.  I sat out on my patio.  It was a beautiful afternoon.  The sun warmed me to the core.  I breathed in promises of spring.    And there I began to pull my mental, emotional, physical, and spiritual self together.  Harmony.  Balance.  Although I couldn’t make out the exact road ahead, I knew that the next 48 hours of my life was going to be like nothing I had ever experienced.  I had known since week 20…this birth was going to challenge me like no other.  I knew the moment that Benjamin would be taken from my body that it would trigger a windstorm.  I had to trust that all would unfold as it should.

When I went to bed that night, my breathing was peaceful.  I surprised myself with my steadiness, my preparedness. I was more centered than I think I have ever been in my life.  Pure strength.  Absolute faith in myself, my husband, and my baby.  I had no fear.  It was time.  And I was ready.

I take walks.  4 miles, almost every day.  When it’s too cold I do my walks at the gym, but if at all possible I prefer to be outside in the fresh air with sounds and movements all around me.  The streets I walk in my neighborhood are my “querencia”.   “Querencia”-a spanish word.  It describes a place from which one’s strength of character is drawn.  A place where one feels safe, at home, and at peace.  In my querencia, I am always able to unearth clarity.   Over the next month, I gathered many realizations from the streets of Beaverdale.  A list seems appropriate…

1.  The human spirit is strong.  Stronger than we tap into sometimes.  This was not a time to resign my strength to weakness.  This was a time to rally.  Ben needed me more than ever and I would be ready.

2.  Life is not meant to be resisted.  I had exhausted myself by putting my hands up, digging my feet in, trying to stop what did not belong to me…Ben’s life.  I realized that my resistance was saying that his life was wrong or unacceptable.  That was the last thing I wanted to communicate to my precious son.  So I began to embrace.  I would embrace his life to the fullest and allow him to be anything and everything he wanted to be.  I would let him write his story.  He didn’t need me to be his editor.

3.  I was being very arrogant, thinking that I had it all figured out.  Up until now, I had determined that the journey ahead had it “out for me”.  That it would be dreadful and awful.  Now, suddenly, I was seeing things differently.  The journey had possibility.  Endless possibility.  I realized the journey was going to connect me to handfuls of people, places, thoughts, feelings, and experiences.  I needed to hold on and go for the ride.  To really be my authentic self I was going to have to take it all on…the good, the bad, the ugly, the wonderful.

4.  Resilience….I read the most beautiful article while getting a much-needed pedicure during this time.  It examined the human brain and one’s ability to be resilient in trying times and challenging life experiences.  Interesting stuff.  What I found most fascinating, however, was the definition of resilience that this article gave.  Resilience is believing that, on the other side of a tragedy or challenge, you will be a better version of your current self.  Yes.  From that point forward, I trusted that I would be resilient.

So this may be a list of random thoughts for some.  But when I ended my walks on these days, I was finding my strength of character.  And I was excited again.  I was going to be a mom.

January and February were fabulous months.  I truly enjoyed being pregnant.  Had my first baby shower.  Unpacked gifts.  Painted the nursery.  Put together the crib.

Benjamin was on his way.

We went to the specialist for a follow-up appointment on December 27.  Here are the ultrasound pictures we received that day.  This appointment was very different than the previous.  The specialist was much more laid back and relaxed this time…probably because he knew the amnio results had come back clear.   Again, there seemed to be no other detectable defects.  The specialist even “signed off” on us at this appointment.  We knew we were still dealing with micrognathia, but the rest of the news sounded promising.

Let me apologize from the get go for this next installment of the story.  The 6 weeks that I am about to describe to you were the darkest of my pregnancy with Benjamin.  These were the trenches that I had to battle and dig through to find my way.  I promise you that there is light at the end of this period of time.  So stick with me…walk through these trenches with me again.  They were necessary in order for me to arrive at resilience.

The only way I knew how to get through the two weeks of waiting for the amnio results was to put myself into a tight, little, controlled box.  Wake up, go to work, come home, go to bed.  I moved so slowly and barely breathed during those two weeks.  I didn’t want to disturb the world.  If I could just be still enough, quiet enough, then maybe nothing would get worse.   I anticipated the phone call that would give me the news.  I feared that noise.  The “ring”.  There were times when I didn’t know how I would be able to bring myself to answer the phone when that moment finally came.   Where would I be?  What would they say?  How would I cope?  My strength was in doubt and in fear of judgment.

Just before Thanksgiving, I felt the first kicks from Benjamin.  It was early evening, yet found myself already in bed with the covers hiding me from truth.  Then there he was.   Letting me know him a little and forcing me to deal with reality.  It was the first time in a week that I allowed myself to pull down my walls of restraint.  To experience.  To live again.  And there was joy for an instant.  Pure happiness.  I was reminded that I had a life inside of me.   Not a “case”, a “concern”, an “abnormality”, or an “issue”.  But rather, a boy.  A son.

I believe it was those kicks that carried my through Thanksgiving.  Travels, family, food.  A time of togetherness when all I wanted was isolation.  I hated that I was the reason that everyone was “walking on eggshells”.  It broke me to watch people stretching fake smiles and working so desperately to be sure there were no lags in the conversation.  Any hiccup of interaction meant we would have to endure the uncomfortable silence.  None of us were real that Thanksgiving.  We just played nice.

There were no phone call over the holidays, of course.  When I reached Day 14 of waiting, I couldn’t take it anymore.  I called them.  I asked them.  Well, that is, I left a message with a machine.  I pleaded with a device, “My name is Allyn Locker.  I had an amnio done 2 weeks ago and still have not heard anything back.  PLEASE, please call me at your earliest convenience.  I may be going crazy.”

20 minutes later I walked into a middle school, headed to a meeting.  Cue the “ring”.  The passing bell had just rung and there were swarms of teenagers invading the hallways.  Laughing, joking,  holding hands.  No cares in the world.  And I, a soon-to-be, scared mom walked against their current.  I answered my phone.   The woman’s hello to me let me know I could breathe.  It was bright and free…a voice that would be delivering good news.  And it was.  It was great news.  The amnio had come back clear.  I called Jon.  He breathed.  I cried.  We had ruled out several genetic defects…Trisomy 18, Trisomy 19, spina bifida.  Several others.  Of course, there were defects that an amnio could not detect.  But those would have to wait.  For now, we were at least sitting in the best position possible for the situation we had been dealt.

Funny, you would think that the amnio results would have brought me to a calmer place.  But it didn’t.  I lost it over the next 4 weeks.  Completely and utterly lost it.  I was trapped.  I had just been given news that my baby was not right, yet there were really no answers.  No definitives.  No reasons why.  No plans of action.  Nothing.  I was stuck within the absence of certainty.

In my head.  No way out.  Call it depression.  I think it may have been worse than that.  There were episodes.  Full 48 hour episodes of crying uncontrollably and completely checking out.  Closing myself in the guest bedroom.  Staring off at the wall.  I was being overtaken by something I didn’t understand.  I couldn’t find my footing.   I didn’t know how I would be able to survive 5 months of waiting in the unknown.  It seemed unbearable.

Then there was the frustration of being pacified.  Family and friends, in their loving attempts to make me feel better, were simply not listening.  When I would try to explain what was wrong with Benjamin, I would immediately be interrupted with “Everything will be fine”, “All babies look different”, “A small chin? Maybe he just has small features”.  I was screaming, but nobody was hearing me.  Even my husband, who I know only had the best intentions would just tell me to relax and that it was probably no big deal.  No big deal?  Was anybody seeing what I saw?  Was anybody reading the research I had found?  Why was nobody listening?????

My only refuge was work.  For whatever reason, my co-workers let me talk and rediscover remnants of normalcy.  Maybe it was because these were the people that I spent most of my time with.  Maybe it was because so many of them were mothers and could relate.  Not sure why, but they gave me my voice.  Through my days at work, there were opportunities where I could say all of this out loud.  I could make all of it real.  Tell them what was wrong.  Tell them I was worried.  And they heard me.

Slowly, I was finding some traction.  There were even some good days mixed in with the bad.

Then Christmas.  Another holiday.  I told Jon several times that I didn’t want to go.  I just wanted to stay at home with him.   Put my head under the covers and wait for the Monday after Christmas-that would be our next appointment with the specialist.  I just desperately needed to see Benjamin again on that ultrasound.  That was all I could think about.   But, we went.  We went to my in-laws and to my parent’s house.  And the most amazing thing happened…there was relief.  Relief from the agony I had experienced for the past 6 weeks.  Christmas was glorious and fun.  It was filled with serenity and peace.  I laughed, I smiled, I enjoyed family….I realized how lucky I actually was and how much I had to be grateful for.  It was Ben’s first Christmas with us and I wanted him to feel happiness through me.

So there it was.  The crack in the door.  The first glimpse of light.  Something that could lead me out.

I would embrace the struggle and the uncertainty.  I would fight for my son and my family.

 

Tuesday, November 16.  Strange feeling.  We couldn’t wait for 1:30pm to come so that we could get more information from the specialist, but at the same time we were dreading it and hoping the appointment would never come.  From the moment we walked through the door, we knew we had been shoveled into a whole different category for this pregnancy.  This office felt different.  A quiet, dim, and delicate atmosphere.  Sitting in the waiting area, I made subtle eye contact with the women sitting across from me.  We all carried the same look on our faces…a cross between being hopeful yet remaining prepared.  Sitting cautiously, holding the hands of our significant others.  I found some comfort in the fact that I knew I wasn’t alone.  That all of us in that room were experiencing something out of the ordinary.  Our silence spoke volumes.

This ultrasound was the deluxe version.  4D, incredibly thorough.  I was tense as the ultrasound tech measured every last inch of Benjamin and checked every organ.  She handed over some pictures and went to get the specialist.  He would review the images and measurements and come speak with us.  The pictures in our hands made it clear to us that yes, indeed, our son’s profile did not look normal.  His chin was pushed back and I was beginning to understand why that would cause so many problems for his breathing and feeding once he arrived.

Enter the specialist.  Time for him to take his turn with the ultrasound wand and examine little Benjamin for himself.  He spoke quietly, yet firmly.  There were no other problems that he could detect.  As far as he could tell, all major organs appeared to be functioning properly and measurements seemed within the normal range.  A moment of relief.  A compressed moment.  Examination over, he sat back in his chair and explained to us that micrognathia is rarely seen in isolation.  That quite often it is related to more significant genetic defects, particularly Trisomy 18.

So next step…an amnio to examine the chromosomes of our little guy.  Right then, right there.  Amnio.  I squeezed Jon’s hand as the needle went in to gather information that would give us some insight into what might be going on.  Results in 2 weeks.  2 weeks…a lifetime.

As the appointment was commencing, a loaded question from the specialist, “if there is a genetic finding, would you consider terminating this child?”.  I think he could tell by the way my face jolted that this was a question that had not even come close to crossing my mind.  I wasn’t offended.  I knew he hadn’t asked me that question to challenge my beliefs or be rude.  His job was to prepare me, to list my options.  And to be honest, I appreciated his straightforwardness because I knew that there would be no beating around the bush with him during this process.  We wouldn’t have to pretend that everything was fine.  We could remain in reality and ground our decisions there.

Nevertheless, survival for my child was not negotiable.  And that isn’t because I have a so-called stance one way or another…I am certainly not qualified to judge anyone else’s life.  But, for me, Benjamin’s life would always be worth living.  We would survive together.

 

It is an understatement to say that I was spinning, desperately drowning.  I went home the day after the ultrasound and just cried.  Cried sadness, cried fear, cried helplessness.  The minutes ticked by so slowly as I waited for Jon to get home from Colorado.  When he did arrive, my wet, swollen eyes and limp body told him that this thing called “micrognathia” was something a little more serious that I had let myself communicate to him over the phone.  I had maintained my composure when I first told him about the “small, receded chin”.  I could not bring myself to cause Jon worry when I knew he would be trapped in a van on the highway for another 8 hours.  So I waited….I waited until he got home that night.

We began to tiptoe through the internet.  We found out very quickly that this could be a slippery slope.  It was immediately evident that micrognathia was rather rare, and this made it difficult to find good information and even tougher to try to understand.  One site would make us feel somewhat better about the situation and the next hit would lead us further into despair.  We removed our fingers from the keyboard for the rest of the night and made a decision that we would come together and take this one step at a time.  That first step would be the appointment with the specialist the following afternoon.

Acknowledging reality can be so difficult at times in our life.  I cried myself to sleep that night.  Not the soft, whimpering cries.  The cries that take your breath away and feel like they will never subside.  I wished for it all to go away.  But when morning arrived, it was all still there.  Laying there at the side of my bed, waiting for me to pick it up and carry it with me.  So I did.  Because there was no other choice.  I had to accept.

It was Monday, November 15.  Jon and I had been counting down the days to this appointment.  It was week 20 and we had an ultrasound scheduled that would include finding out the sex of the baby.  Though we knew we would be thrilled with either a boy or a girl, we were both crossing our fingers for a son.  Not sure why, just seemed like that was the way it was supposed to be.  A baby boy Locker.

Jon had made it to every appointment up to this point, but today I was headed to the doctor solo.  He had just played a few shows in Colorado and was headed back to Des Moines on this particular morning.  So as I made my way to the doctor office, Jon eagerly awaited a text or a phone call from me to share the news of the ultrasound.

The ultrasound tech called my name and led me back to the room.  I could hardly contain my excitement.  I laid down and waited for the wand to touch my belly.  Within seconds she announced “it’s a boy!”.  Tears rolled out the corners of my eyes and down my cheeks.  I immediately thought of the phone call I would make to Jon after this.  My heart floated thinking of how excited I knew he would be.   The ultrasound ended and the tech asked me to go back out in the waiting room.  The doctor would meet with me next.  I used this opportunity to share the wonderful news with Jon.  I sent him a text, “your son looks very happy and healthy”,  I received a response immediately.  I swear our happiness overflowed that waiting room right then and there.  The walls had to stretch to fit all the joy in my heart.  The moment was quickly interrupted by my name getting called.  I looked up to find the ultrasound tech waiting for me again.  As I approached her, she told me “we are just going to take another look at the baby.”  Those words were like a pin,,,deflating the happiness that had filled that room just minutes before.  The walls closed back in and I wished for Jon to be there with me.

I laid back down and let the wand touch my belly again.  The ultrasound tech didn’t talk.  With each passing second, the pit in my stomach grew bigger and bigger.  I knew something was not right.  I began to brace myself.  I didn’t know what I was bracing myself for, but knew that something was coming that I was not prepared for.

“Micrognathia”, the doctor told me.  “It’s a boy and he has micrognathia”.

It was mid June 2010 when Jon and I sat down and officially made the decision that we wanted to try and get pregnant. It was very important to us that we felt strong financially, emotionally, spiritually, and physically before making the decision to bring a new life into this world.  And we did…our relationship was so strong and we felt very ready to embark on our journey to add to our family.

We barely had a chance to blink and we were pregnant.  It was about the third week in July when we got our first positive pregnancy test.  I had “just known” for about two weeks prior to that, but now it was for real.  Jon and I were so happy and SO surprised.  Due to some past complications with myself, I called the OB right away and they got us in for an ultrasound at 7 weeks.  And it was all great news.  Yes we were pregnant.  And yes all looked great.  Now it was time to start sharing our news with family-and with friends soon thereafter.  It was such an exciting time.  Conversations of baby names and nursery colors filled our house.  I would lay in bed at night, unable to sleep…just thinking about and anticipating what the next 9 months of my life would be like.  All in all, other than some mild morning sickness, my first trimester went very smoothly.  When we finally hit that 14 week mark, we felt confident about my health and the health of our child.