Sloane's Story

One of the most wonderful parts of walking down this road is the friends you meet along the way. I have been very blessed to meet one of the fiercest little girls in the world. Her Momma and I have never laid eyes on one another however we have laughed, prayed and shared many bitter tears together. This beautiful family has had the hardest year but has managed to walk down this road with grace, fortitude, prayers, smiles, and many tears. This is Sloane's story………

January 19, 2012, 6:38 p.m.  I waited…and waited…and waited. I blocked out everything else that was going on in the room.  The bustling of the nurses in the corner, the sound of my husband getting ready to take the first pictures of her, the beeping of the machines.  It all disappeared.  At this moment it was just me and her and I was holding my breath and waiting for a sound that would never come.  This was it.  This was the moment that the Earth stopped spinning and my universe shifted into its new position where it will stay for the rest of my life.  This was the minute that I would draw my last real breath and my daughter would begin fighting for every single one that she will ever take. 

From the minute she was born she was gorgeous.  She looked like no other baby I had ever seen.  She had a mop of black hair and eyes that were entirely too mature for a brand new baby (her first gift from her daddy).  Her mouth looked like a tiny little rosebud placed perfectly under a precious little button nose.  Her hands were tiny but her fingers were long.  She was perfect.  As the doctor placed her on my chest, I cried.  I cried because I was so elated to finally meet this girl and I wept because deep down I knew that something was not right.  I still hadn’t heard the sound that I so desperately needed to hear.  I was waiting on that outburst that newborns have.  That first big wail that says “I’m here and everyone needs to know it”!  I was allowed to hold her for only a few seconds and then she was rushed to the nursery where the nightmare would all begin.

A few hours later we were told by a specialist who had been called in to the hospital that Sloane was having trouble breathing.  Her respiratory drive was erratic and at times nonexistent.  Her heart rate was also an issue.  It would drop down to dangerous levels very quickly and without any warning. They couldn’t seem to figure it out.  She had been intubated and placed on a ventilator.  The next time I saw her she looked like a teeny tiny baby bird placed in a nest of machines, tubes, wires and probes.  No beautiful hair exposed anymore.  It had been replaced by a cotton cap that held medical equipment in place. No wise eyes peeping out.  They were lost under a cloud of sedation.  Her beautiful hands were covered in IVs and tape and dried blood.  That rosebud mouth was pried open by tubes that were held in place by a massive piece of plastic that was spread across that button nose and her little round cheeks.  How could this be my child?  How could this be happening?  How did I make it through a peaceful, uneventful pregnancy to find myself standing over her vulnerable, weak and sad little body in the nursery of this hospital? How, after years of trying to have a baby, losing a baby, fertility treatment, tests, procedures and those awful drugs. How could this be?  Hadn’t we had enough?  I stood watching her fight for her life and she seemed so alone.  We couldn’t even get close enough to really touch her. This is not how this was supposed to happen.  Her daddy and I should be getting to love on her and learn how to take care of her while friends and family poured in to see her and ohhh and ahhh over how beautiful she is.  I had bags just down the hall with her brand new monogram on them that were full of outfits that she should have been wearing.  We should have been getting ready to take that first “baby is all cleaned up and looking warm and cozy and mama has showered and has on makeup and cute pajamas” picture.  The one that you send to everyone you know announcing that your perfect little bundle was here and that she is, in fact, perfect.  I don’t have a single picture of myself holding my baby after she was born.   In fact, I don’t have a picture of me holding her until she is many, many days old.  I wanted to pick her up and untangle her from all of that mess that they had created around her.  I wanted to put her in that precious little pink cashmere outfit that her daddy picked out for her.  I wanted to go home and introduce her to our dogs and start our lives as a family.  I wanted the life that I had been dreaming about for the last few years to start. 

The next day came and in what initially seemed like a string of coincidences, the neonatologist that was in the nursery the night Sloane was born had just transferred from our state’s only children’s hospital.  She had a feeling that she knew what was going on.  She said that she had seen this only two other times in her career and that we needed to get to the children’s hospital right away. In fact, the helicopter was already on its way.  Again, not part of my plan.  We should have been taking her home where she would live happily ever after. Fairy tales come to an abrupt halt when the last thing the doctor says to you before your tiny baby gets on a helicopter is “I’m just not very encouraged by Sloane” and “She just seems sort of lazy, like she doesn’t really care to breathe”.  It’s ironic that in just a few days a friend of mine would create a Team Sloane logo that has the words “Girl Is Fierce” across the front.  Sloane wasn’t lazy, she did care and she WANTED to live.  She’s proven that every minute of her life since then. 

As Sloane makes her way to the children’s hospital via helicopter, my mother, my husband and I make the nearly 3 hour drive.  They didn’t bother letting one of us go with her in the helicopter.  Yet another scary event in my daughter’s life that she had to endure alone.  I remember saying to my mother on the car ride to Little Rock, “What if she has to be here for like a week or something”.  Wow - If I knew then what I know now. Once we got to the hospital we went straight to the NICU and the first thing I see is a tiny baby being wheeled down the hall.  The poor thing was covered in electrodes and there was barely room for her in that bed because most of the space was being used by machines and monitors.  As that baby got closer I realized she was mine.  She had already been attached to more stuff.  She was almost unrecognizable. 

The next few days are a total blur.  I don’t remember sleeping or eating.  I don’t remember talking to the countless friends and family members who waited in the waiting room.  I don’t remember bathing or ever leaving the hospital although I know I did.  I had to.  Because you see, they don’t let you spend the night in the NICU.  So every night parents have to say goodnight to the most precious thing in their world, walk away and hope and pray that someone who is sweet and kind and gentle will be assigned to keep your child alive that night.  Within a couple of days the doctors had tested everything and they concluded that Sloane probably had CCHS (Congenital Central Hypoventilation Syndrome or if you prefer medical slang, “Ondine’s Curse).  Luke and I were confused.  What on earth was CCHS?  What did that mean for Sloane?  And could we just go home?  The doctors did the best they could to explain CCHS but with less than 1500 people in the world who suffer from it, they weren’t experts.  CCHS in very short terms is a respiratory disorder that is fatal if not treated.  It’s a very rare and serious form of central nervous system failure as it relates to the autonomic control of breathing.  In English?  It means that those with CCHS do not breathe when they go to sleep.  While most of us don’t even think about continuing to breathe when we go to bed at night or take a nap on the couch, if those with CCHS do this without the proper life support, they will die.  CCHS never goes away.  It’s genetic; it’s part of every single strand of DNA. It’s not something that is outgrown. So with our permission they sent a sample of Sloane’s blood to a lab in Chicago that would test for it.  It took over two weeks to get the results. 

A lot happened within those two weeks.  Luke and I were allowed to “help” give Sloane her first bath.  She was almost a week old and up until this point was too unstable to bathe.  So there we were: Luke, me and a nurse giving our baby a sponge bath.  I picked glue and goop from the electrodes out of her beautiful hair for what seemed like hours. We carefully wiped her skin with rough hospital issued washcloths.  Then the nurse put a new diaper on her and allowed us to pick out a pair of socks for her.  No cute pajamas, as they would interfere with all of her IV’s.  How’s that for a first bath memory?  It was a far cry from the scene I had created in my mind.  No cute whale shaped bathtub, no delicious smelling Kiehl’s bath wash and certainly no monogrammed towels.  But none of that really mattered because for the first time, we really got to touch her.  We got to hold her tiny fingers and rub her sweet little back.  We got to pat her bottom and tickle the bottom of her chubby little feet.  I held on to that memory for a very long time and it ended up getting me through many sleepless nights.  I wanted so badly to nurse her and have those very intimate bonding moments with her but that was out of the question with an intubated baby. So I started to pump in order for them to at least give her some of my breast milk.  Perhaps one of my saddest moments (as if there hadn’t been so many before) was after a particularly unproductive and painful hour of trying to pump and producing only a few drops.  A nurse explained to me that I probably wouldn’t be able to produce enough milk to sustain her. Due to the lack of interaction and bonding with her, my body didn’t really recognize that there was a baby in the picture.  In order to stimulate my body and remind it that I had a baby, they suggested that I take something with me that smelled like her when I tried to pump. This was devastating to me.  Sloane and I had missed out on something really special and extremely important.  We didn’t get those first few days cuddling and bonding when all of those “hormoney” things happen and as a mama your body makes all of those magical changes that God put in place so that we can take care of our babies.  I didn’t know if Sloane knew that I was her mother but I did know that my body didn’t even know she existed.  I was heartbroken and this was the start of a very hard journey that Sloane and I would go through in order to form the bond that I so desperately wanted but could not, no matter how hard I tried, feel. 

Also during the time that we waited on the results of the test, Luke and I started researching CCHS.  We read everything we could get our hands on and reached out to other parents who have children with CCHS.  We needed to know what we were up against if the test came back positive.  What we found was that while it was not the best diagnosis that we could get, it certainly wasn’t a death sentence.  Unfortunately not everyone felt this way.  We were asked (more than once) if we wanted to let Sloane go.  This is a question that no parent should ever have to answer.  Yes, she was broken and tattered and a complete mystery to everyone, but to her daddy and me she was our miracle and our hero.  The question itself is horrendous but what the question does to the mind of a parent is so much worse.  Imagine being asked this and then think about how that automatically forces you to look at your child.  You can’t help but think that her life is going to be so grim that it’s not worth saving. It’s a good thing this thought was fleeting.  Sloane hadn’t given up and we refused to give up on her.  Her heart rate issues had also started to get more concerning.  She was seen by a cardiologist who determined that a pacemaker should be implanted immediately.  The following morning my baby girl, on her eighth day of life, had a pacemaker placed into her tiny little abdomen.  She sailed through the surgery and was sent back to the NICU within 24 hours. After all of our research, Luke and I knew that Bradycardia (the condition that caused her to require the pacemaker) was a side of effect of CCHS.  In the meantime, Sloane’s bathroom habits were becoming a cause for concern as well.  She was not pooping on her own, yet another sign pointing to the diagnosis that we really hoped she wouldn’t get. 

On February 7, Sloane was diagnosed with CCHS.  In addition, she was diagnosed with Hirschprung’s disease (the CCHS side effect that caused the bathroom issues).  Hirschprungs is a disease of the abdomen which is caused by the lack of nerve cells that help the large intestine function properly. The next day my husband, being a direct match with Sloane, gave several units of his blood because the next morning Sloane would undergo three surgeries at one time and would more than likely need a blood transfusion.  The doctors sent several nurses to Sloane’s bedside to explain to us exactly what to expect the next day.  One nurse brought a book to show us what a tracheotomy would look like.  I couldn’t bring myself to look at it.  Later that night I begged my mom to tell me how the pictures of the babies looked in that book.  I could tell she didn’t want to be honest with me.  Tears streamed down her face and she whispered the word “awful”.  Later on I found out that the book that the hospital was using to show parents how their children would emerge from the operating room with a trach was completely outdated and didn’t really paint an accurate picture of the medical equipment used today.    

February 9 was the most horrific and most beautiful day of my life.  Sloane was walked down to the operating room by her mama and daddy and both sets of grandparents.  She had quite the parade through those halls.  We all wept and prayed over Sloane and for the next few hours sat huddled in a waiting room with about 80 other strangers while Sloane was somewhere down the hall in a cold, sterile operating room getting a tracheotomy, a colonoscopy and having a feeding tube placed into her stomach.   The questions “Why me?”  “Why us” and most of all “Why Sloane” played over and over in my head.  When everything was over and she had been taken back to the NICU we were allowed to go see her.  When we walked into the pod where her crib was, it was like a spotlight was on her.  It was one of the most amazing moments of my life.  I could finally see her face.  No tape, no big plastic piece holding her mouth wide open, no tubes shoved down her throat.  She was laying there sleeping peacefully and we finally got to see all of those precious features that had been hidden since the night she was born. She was even more beautiful than I had remembered and I sat next to her rubbing her cheeks for the next 5 days as they kept her “snowed” so that she wouldn’t move and irritate any of the surgical wounds. 

After that, the remainder of Sloane’s four month hospital stay was really about her getting big enough to use a home ventilator.  Babies have to be at least 5 kilograms (11 pounds) before the doctor will even try to put them on it. On April 14 Sloane hit 5 kilos and on April 18 they put her on the ventilator that would end up coming home with us.  Before they transitioned her to this vent they warned us not to get our hopes up.  No child had ever transitioned the first time it was tried.  The minute they put Sloane on it she never looked back.  So about a month later, after Luke, my mother, his father and I had been through extensive training on how to care for her, we got to take Sloane home.  We were scheduled to be discharged on May 15. On May 14 I packed up Sloane’s belongings and cleaned out the only “home” she had ever known.  I didn’t take much.  I didn’t want to keep anything that reminded me of our time there.  I wanted to start fresh when we got home.  So I packed the bag with her name on it - the one that had once held newborn outfits and her beautiful going home outfit.  It now held medical supplies: a pulse oximeter monitor, a CO2 monitor, a portable suction machine, a home suction machine, all the supplies to change an ostomy bag, a spare g tube for feedings, extra trachs, trach ties, drain sponges and the list goes on). 

Because we live so far away from the hospital, she had to be taken home in an ambulance.  Her daddy rode with her and I followed closely behind.  It was during this three hour ride that things kind of got weird for me.  I had almost convinced myself that when those ambulance doors opened, all of this would be behind us and Sloane wouldn’t have a trach and a vent and an ostomy bag and a g tube.  She would be able to breathe when she slept and she would eat from a bottle and she would poop in a diaper, not a plastic bag adhered to her tummy.  But – when we got home and they unloaded her, nothing had changed.  What was going on?  We’re supposed to be taking pictures next to a stork in the front yard with her name and birth date on it.  We’re supposed to be carrying her in to meet her 4 legged sisters Bayona and Clancy.  We were supposed to take her on a tour of her house and show her the nursery that we worked so hard to make perfect for her.  I didn’t want all of those machines to come in my house with her.  I wanted to take her off of that God awful vent and Pulse Ox machine and throw them back in the ambulance where they belonged.  I wanted to take my daughter in the house and slam the door on CCHS.  If only it were that easy.

We spent the next few months learning how to have a very medically complex baby live with us.  I spent those months just trying to keep her alive and healthy.  I was her nurse now.  From the time Luke went to work until he got home in the evening; I was in charge of her life.  I had the ultimate responsibility of keeping her alive all by myself.  I took my new job very seriously.  In hindsight, I took it too seriously.  I didn’t read to her, I didn’t cuddle with her.  I cleaned her supplies and kept very meticulous notes about what she was doing almost every single minute of the day.  I took her temperature and checked her CO2 every 30 minutes.  There were days when we never left her room.  My husband would come home from work only to find me in the same place that he left me when he went to work. I was scared to death to move her around.  I was scared to death of her.  Period.  As the days and weeks went on, Sloane got stronger and stronger and I got worse and worse.  The heaviness of this life was suffocating me.  I was losing it.  I began to resent Sloane.  I began to resent my husband for getting to leave every day to go to work.  I wanted to escape from this situation.  I knew that I wasn’t good for Sloane.  Yes, I was taking extraordinary care of her.  She was amazingly healthy but that’s all she was getting from me.  I was still nothing but a nurse.   I didn’t feel like a mom. During those days I used to think about things my girlfriends had said about their new babies - Things like “I can’t imagine my life without her”.  I didn’t have these feelings.  I could imagine my life without her.  It was easy.  It was happy.  I wasn’t scared to death every second of every day.  I could breathe. I missed that life.  These are awful feelings to have about your child and even today I cringe thinking back on that time of my life.  I used to beg to God to either give me the things I needed to be a good mother to Sloane or just take me out of her life.  She deserved better.  For several months I didn’t leave the house much.  I only took a quick trip to the grocery store every now and then or a doctor’s appointment for Sloane.  I distanced myself from my friends. I didn’t want to see them.  I was ashamed of the person I was and I was afraid to introduce them to Sloane for fear that they would think she was some sort of weak and fragile freak.  I stopped answering the phone; I made excuses for people who wanted to come see us and her.  Looking back, I’m so embarrassed and ashamed that I behaved this way because these are the people that I needed the most.  These were the people who would have helped me crawl out of that dark hole in which I had placed myself. 

A dear friend who is a psychologist (and more importantly Sloane’s Godfather), connected me with a good therapist which turned my life around.  I began to get used to my new life and embrace our version of “normal” which, by the way, is a word I hate. You see, when you have a medically complex child like Sloane, the word “normal” changes drastically. Our society puts so much weight on being ”normal” but who really knows what that means?  Do I think Sloane is normal?  Yes. She is just like a typical child her age; she basically just needs help breathing when she sleeps.  To me, it’s no different than a child with asthma that needs an inhaler or a diabetic child who needs insulin.  Sloane is going to go to school, do all of the activities that her friends do, go to college, get married, have babies and live a full, meaningful, important life. So yes, my daughter is normal. Well actually, she’s extraordinary and she’s my best friend.  And she is such a blessing to us.  She’s more than I ever could have imagined and way more than I deserve. 

As I type these last few thoughts, my precious baby is still asleep.  I can hear on the intercom.  Over the steady rhythm of the ventilator, I can hear her.  She’s dreaming and that makes me smile.  Every night when her daddy tells her goodnight the last thing he says to her is “Dream big little girl”.  And you know what?  She is.  And so are we.  We’ve just celebrated her first birthday and I know with all of my heart that this child is meant for very big things.  She is going to change lives and make this world a better place.  She’s already started.  The answers to so many of the questions that I had in the beginning – why me? why us? why Sloane? why didn’t I get my fairy tale? are unfolding every day.  And the best part, those don’t really feel like questions anymore. Sure, there are things that will never be answered but I’ve accepted that.  It’s ok because now I feel blessed, not burdened. My heart is full.  My heart is happy.  My baby is perfect. 

I’ve learned a lot of very hard lessons over the last year.  Some that I hoped I would never have to learn and some that I never knew I would be lucky enough to learn.  

Here's what I don't know:

1.  Why God entrusted us with such a fragile child.
2.  Why our Sloane was chosen to bear such a heavy burden.
3.  Why I will never experience the sheer joy of pregnancy, labor or holding my newborn baby in my arms
4.  What it feels like to have a baby sleeping in my house that isn't on life support
5.  How to give up.  I saw a quote recently that said:  “We’ve got three choices in life. Give up, give in or give it all you’ve got.” The first two are not an option. 


Here's what I do know:
1.  My child is a miracle.
2.  Life is fragile yet the human spirit is fierce.
3.  Friends, true friends, will be there.  At the beginning, during the worst of it, and when you decide to

crawl out of that dark hole and come up for air.  And they will be just the same as they were before you found yourself in this place and won't fault you for being forever changed.

4.  Doctors don't know everything.  It's up to us as parents to advocate, research, study and be diligent about the care our children receive.
5.  Life is hard. It's best to take it one day at a time.  Sometimes one hour at a time or one minute.  The challenges put in front of us can be overwhelmingly difficult and scary. 
6.  You have to be kind to yourself.  Beating yourself up isn’t good for anyone around you and the bruises take a long time to heal.
7.  Its ok to cry. - A lot
8.  We absolutely are given more than we can handle sometimes.  But we are never left to fend for ourselves.  He will provide what is needed to get through it.

9.  God is good.

 

 

 

 

 

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