A Story About a Baby (Part 3)

The words “What’s your husband doing today?” are ominous. My heart jumps out of my chest.  I already know that means bad news but I put on my brave face and prepare myself to listen.  In the end, the news isn’t something I could ever have prepared for.  It’s much worse.  Brave face or no, the tears come uninvited.

My doc begins to point out areas on the baby’s body with words like “thick skin” and “fluid filled cavities”.  Then he drops the word “hydrops”.  I don’t really understand what any of this means.  He says something isn’t working right, baby has a layer of fluid around head, neck and body.  Caught this early, it usually reduces the chances of survival.  From a rank of 1 – 10, with 1 being the best diagnosis, he says baby’s severity is 8 or 9.  My hopes and dreams are dashed.  I just lie there in shock trying to retain as much information as possible while not quite believing that any of this is happening.  In the end, I take away from this that I need to get ready to say goodbye.

Next I have a visit with the genetic counselor.  I feel completely numb by this point, unable to process as I answer question after question about my family’s genetic history and then again about Alex’s family’s genetic history. 

Two vials of blood are drawn for genetic testing and I watch the whole thing, speaking volumes to the numbness I feel.  I set up my next appointment and leave. By this time, dread has set in.  I don’t know how to tell Alex the news and I don’t want to share it. I know his brother will be visiting and that makes my approach even more difficult.

Once Alex notices me walking in the door, he asks me about the ultrasound, at which point I immediately start crying.  After I give him the rundown, Alex is crying with me. There are tearful exchanges as we say goodbye to his brother, followed by more crying.

By this time, the numbness starts to dissipate as other emotions crowd in.  Anger is the first of these.  How could this happen?  This is my first pregnancy.  It’s supposed to be fun and relaxed so that I can treasure this time with my baby.  Now all future pregnancies will be scarred by this one.  The doctor mentioned that because of the severity of the hydrops, termination is an option.  I just want to get this “thing” out of my body so I can have a healthy baby.  The longer it sticks around, the longer I have to wait to get my real baby. 

Alex and I deal with this by crying, watching funny movies, crying, playing games, and crying some more.  I do not want someone to try and give me hope or tell me that things could be okay, because right now, they are certainly not going to be okay.  I have no doubt that by my follow up appointment in one week that there will be no heart beat.  I do not want to be attached.

I finally realize that I need some help, so I look for some support outside of my grieving husband.  I find this in the form of online support boards: “Terminating for Medical Reasons”, “Carrying to Term Despite Fatal Fetal Diagnosis” and one specifically for Hydrops Fetalis.  No decisions have been made, but I want to keep my options open, so I post on all of these boards.  I receive overwhelming support and love from each group. 

My hydrops group tells story after story of their experiences carrying a baby with this dreaded diagnosis.  Some learned it was caused by a chromosomal defect, others a virus, still others are left wondering having found no answers from an autopsy.  Reason after reason is thrown out, and I begin to realize that the causes are as individual as the babies.  Mothers grieve over the loss of their babies, many who passed on shortly after birth, and others whose hearts gave out and stopped beating before they met their mothers. 

And yet, there is story after story of mothers taking home their beautiful babies after weeks or months in the NICU.  Babies who were somehow able to overcome the hydrops and are healthy and strong.  These are the stories that keep me coming back - that keep me posting. 

My heart slowly starts to change.  The hurt and anger melt away, to be replaced by a bit of peace and hope.  As time passes, the hope comes a little more strongly.  I start thinking again of my baby as “my baby” and not as “the thing in my belly”.  I slowly allow myself to be okay being totally and utterly attached.

The ultrasound tech at work agrees to check in on my baby as often as possible.  I want to know that heart is still beating and that this baby is still fighting.  I receive an incredible picture of my baby waving to me as if saying “I love you, Mommy. Don’t you give up!”  My heart softens even more.  I am so in love with this baby and will do anything to see it thrive and overcome hydrops.  I don’t know what is causing it, but I do know that I will fight for my baby, and if that means staying positive, then so be it! 

A week after finding out about the hydrops, I have a second ultrasound by MFM. My baby’s heartbeat is steady.  Its growth is ahead of schedule.  Everything looks great…except that nothing about the fluid has changed.  No fluid in the chest cavity which is good.  However, the fluid on the outside hasn’t changed either, and that’s not so good.  All we can do is wait and see what the future unravels, and continue to hope and pray that this baby is a fighter.

Looking for that silver lining every day isn’t easy, but I do it anyway.  Some days the depression sets in.  Others, I feel a calm peace that tells me everything is going to be okay.  I like the peaceful days better. The saying, “Today I am pregnant” holds new meaning to me.  I celebrate every day that I am still pregnant because I don’t know how many of those days I have left.  I should have 27 weeks, but for all I know, I could only have today.  So, today it shall be.  And I will celebrate today.

A Story About a Baby (Part 2)

After a short while, pregnancy nausea starts to get me down.  I do not feel that pregnancy glow that so many talk about.  I start doubting the sanity of my decision to be pregnant. Why do people choose to do this multiple times? Everyone tells me it gets better and it’s worth it, but I begin to wonder after all the horror stories people tell about life with newborns.

            Pregnancy week 6. I notice I am bleeding.  I feel a moment of panic mixed with a feeling of relief.  Maybe I’m losing the baby and I won’t have to be sick anymore. 

            The next day, I go to see my ob and get an ultrasound to check on the baby.  The moment I hear the pulse of that little heart beating, I am sunk.  Suddenly the nausea isn’t such a big deal.  I want to meet this little bean and am anxious for the next 8 months to pass more quickly.

            Weeks pass.  The bleeding and spotting come and go intermittently. Our bean grows into a kumquat and then a lime.  My nausea starts to ease up.  I have more good days than bad, and I’m finally starting to enjoy pregnancy.

           Baby is almost 10 weeks along and we are ready for our big vacation.  The plan is to meet our new niece, visit as many theme parks and beaches as my body will allow, celebrate Alex’s graduation into adulthood as he passes from the 20’s into the “oldie” 30’s, and cheer for my team at the race in San Diego. I have my good days and my bad days.  We kind of roll with the punches and let my pregnancy dictate our activities.  Some plans are thrown by the wayside, and unfortunately these include the beach and the marathon.  But Disneyland kind of gets thrown under the bus too, so it seems we can’t be too choosy. 

Sea World ends up being the highlight of the trip.  We buy the baby a plush Shamu as a reminder of all the awesome things we get to see and our baby is missing out on.  We smile and acknowledge how awesome we are going to be as parents.

Sunday, the last night of our trip, panic strikes when I start bleeding again.  This time it doesn’t ever really stop.  By Friday, I am on the phone with my ob’s office, frustrated and scared.  Another ultrasound, more “I don’t know”s, and a referral to Maternal Fetal Medicine (MFM), the high risk maternity office.

Monday morning, the 10^th of June, I wake, tired and sick with a migraine.  I make it to work but haven’t been able to hold any food down all night, so they send me home.  MFM calls while I am napping and I’m not waking up for anything at this point, so I call them back later when I am more coherent.

Because I am already playing sicky hooky from work, MFM is able to squeeze me in for an appointment in the afternoon.  I quickly get ready and head over.

The ultrasound shows my beautiful baby, alive and kicking, but nothing else.  No evidence as to why I am bleeding so much.  I’ve had a couple subchorionic hemorrhages show up in past ultrasounds, but they are gone by this time.  My tech leaves to grab the doctor after printing off some beautiful pictures of my baby.

When the doctor arrives, the first thing he asks is “What’s your husband doing today?”

A Story About a Baby (Part 1)

It’s October 2012.  I’ve been running my heart out all summer, raising money to help find a cure for blood cancers, and trying to get in shape.  I’ve been working extra hard to get my body into a place where I can safely get pregnant and finally join the ranks of the “busy out of their minds” mothers.

            October 13^th, I cross the finish line of many victories.  My marathon is over.  My body is exhausted and in pain, but I feel glorious.  I am finally medication free, my migraines are few and far between, and my body feels stronger than ever.   We are finally ready to start our newest adventure.

            Months go by and negative tests fill the garbage can.  Each month gets a little more depressing than the last.  Many babies are born.  I get three new nieces in four months and the tests are still negative.  My sister announces a pregnancy, her first, and I’m still waiting for mine to stick.

            I join Team in Training again, this time as a mentor, and try to take my mind off of the lack of baby.  Amazing people surround me and inspire me.  I am in constant awe of the hard work and dedication of those I have been called to mentor.  My “mentees” work hard, run hard, and keep pushing through.

            One day, I fall down the stairs and sprain my ankle.  There goes my running season.  Rain or shine, once my ankle heals up, I am back with my team, this time riding my cheapy Walmart bike.  This adds to the fun factor because I am now able to spend time with more people than those who can put up with my turtle running pace.  I’ve never been a fast runner, but biking? I’ve got that covered.

            April rolls around.  Alex and I are taking a break from trying for that elusive baby.  It’s been 7 months (but it seems at least twice that long). On a whim, I go to Walmart to purchase more tests.  Not because I think I am pregnant, but because that’s the cycle.  I’m used to testing this part of the month and it feels weird not to.

            It’s April 13^th, a Saturday, at 11 pm.  After doing a double take, reality sets in and I realize the stick has two pink lines.  At this point, there is no other option but to jump in the car and drive out to see my husband at work.  I am fairly bursting with excitement, but drive slowly trying to decide how to tell him.

            Alex is sitting at his computer, oblivious to my presence.  I wait for a brief moment, then:

            “Hey, Alex.”
            He turns around, surprised to see me.

            “Hey.  What are you doing here?”

            “I came to show you this!” I say as I shove my used pee stick in his face.

            After a moment of confusion, we move to an area with better lighting, and I remove my thumb from its covering of the second line. Celebrations commence.

           

Don't Stop Believing

It seems to me that the common denominator in the world today is sensationalism.  Everybody wants to hear about the bad stuff going on in the world.  Everybody wants to tell about the bad stuff going on in the world. And in the telling of stories we are missing the abundance of good in the world.

My mother in law asks me all the time if I heard of "such and such" story in the news that week.  My answer is always "no".  I don't listen to the news.  I don't read the news.  I don't watch the news.  Why? I don't want to be worried and anxious about all of the horrible things going on in the world.  I know there are horrible things going on in the world.  But I also know that there are as many or more good things going on in this world.

While everyone may not agree on the approach to making things in this world better, I think none of us give enough credit to others.  I know so many people who are bitter or worried or angry because things are so out of control.  But why are they out of control?  Maybe it's because we let them be.  Maybe if each of us stepped out of our comfort zones and tried to do something that would actually make a difference we could easily create this better world.

A friend of mine is in charge of a running/marathon group that travels all over the country in an effort to share the gift of hearing.  She is making a huge impact on many lives!

Many people I know are right now training for marathons and raising money in an effort to find a cure for cancer.  I've heard the stories and seen the impact this is having on the lives of so many people.

Every day people around the world are making choices that make a positive difference.  The world is changing and I believe it is changing for the better. 

This week, I am going to look for the beautiful in this world.  I plan to find the positive and motivating things in life.  All because life is good!

Meet My Team

One year ago, I started this journey, this amazing, beautiful, devastating journey of saving lives.  Last week marks the anniversary of Gordon's diagnosis with leukemia -- the disease that took his life far too quickly.  Today I look back and see how very far I have come.  And not only me, but how far so many of my loved ones have come.  A journey to cure cancer.  A journey of love. 

One month ago I received the opportunity to help others on their own journeys.  I became a mentor.  5 beautiful women have given up their time to join this journey with me.  I am their mentor.  These women are brave and strong and powerful.  Their lives have been touched by cancer in devastating ways.  And they each have a goal to help me and the rest of the team to wipe out cancer!  They are each making my life more rich and fulfilling.  They give me hope.  They bring me excitement.  And most of all they each bring their own dynamic personality and stories to a world in need of them.  I want you to meet Katie, Amber, Crystal, Terri and Charis.  Please read their stories, and if you feel inclined to help them on their journey, please do.   After all, we all have the same goal: to make this human experience more wonderful and worthwhile for everyone.

Katie: http://pages.teamintraining.org/oswim/rnr13/khassard

Amber: http://pages.teamintraining.org/oswim/fampatma13/worcha

Crystal: http://pages.teamintraining.org/oswim/rnr13/ctreloar

Terri: http://pages.teamintraining.org/oswim/fampatma13/tmerkley

Charis: http://pages.teamintraining.org/oswim/rnr13/csnodgrass