Easton,
Today is your 6th birthday! That means that I have now had the pleasure
of being your Mom for five whole years.
I wanted to sit down and write you a letter on this day because although
you have heard your story a million times throughout your life, I don’t think I
have ever told it directly to you. I
never want to forget what these last five years have been like for me and I
want you to know exactly how special and what a miracle you are. I know you wont read this letter today and
possibly not even for a few years but this letter is from me to you and will be
given to you as soon as you can read it for yourself and when I’m sure you will
understand the content. Your story is
only five years old so far, but it is extraordinary. Easy E, here is your story.
Every single detail to your story is a little different than
all the rest. For beginners, I was
surprised when I found out I was pregnant for you. I was always planning to have more children
but just not so soon! When I did find
out I was pregnant for you, I took seven tests.
Why so many? Every other test I
took had a different result, four were negative and three were positive. I had no idea what was happening and if this
was real or not! Little did I know this
was only the first of the “Adventures with Easy!” When we finally got the blood test results
that did show you were in fact on your way, we were not just surprised- we were
ecstatic! Our little family was growing. When I was just 19 weeks pregnant for you,
Mom and Dad went to a Kid Rock concert that you must not have enjoyed because
it put me right into labor. I didn’t go
to the doctor right away but the next morning I had a bad feeling that the
contractions I was feeling were real.
Sadly, I was right. At less than
half way through your pregnancy I was ordered to strict bedrest, weekly
progesterone shots and stress tests and steroid shots for your lungs on four
different occasions. I was admitted to
the hospital in early labor at least five times and even spent my 30th
Birthday in Hurley trying to keep you safe.
This was a really hard time for us because Carter and Paige were only
one and three years old and I wasn’t able to care for them at all from my bed
or the hospital. I knew in my heart that
you needed me to follow doctors orders and I did everything in my power to keep
you safe inside of me for as long as possible.
While you were growing inside me, we spent a lot of time alone as Daddy
took care of your siblings. I talked to
you all the time and I feel like we made some “deals” about you doing your part
and me doing mine. I was bonded and
connected to you well before I ever saw your face. I knew you and my instinct that you knew me
was confirmed later (and I’ll tell you how later in this letter.)
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| Before the storm... |
There were so many trips to Hurley with contractions and
labor but we were so fortunate that by the Grace of God we made it to 36
weeks. At this point, you were so low
and ready to come out that I was in excruciating pain that couldn’t be
tolerated without medication and your heart rate was starting to show some
signs of decelerations during the ever present contractions. The decision was made that I could get out of
bed and deliver you. The morning you
were to be born was full of gratitude and relief that you had “made it.” You were supposed to be a decent size, we
were out of the major danger zones where we didn’t think you would need support
to breathe. Your sister was also born at
36 weeks with no complications so in our hearts and minds- we knew you were
good to go! Oh , Easton, how I wish that
could have been true for you. The labor
for you was so quick and the delivery even quicker. It was only a few hours from start to
finish. As soon as you were born, all
the weight of the world was lifted. I
was so happy you had arrived safely after months of fear. I loved you so much. When you are first born, the nurses give you
scores on how healthy you are. Yours
were perfect. It was one magic moment
after the next. All of our family was
there and after I held you, I let them all pass you around and see for
themselves what a perfect miracle you were.
After only about 30 minutes, I heard you making this little noise. Everyone in the room thought it sounded like
you were cooing and was talking about how sweet it was. I instantly knew that you were not OK. I knew right then and there in that moment
with your little sounds that my world was about to rock. I begged the nurses to come in and look at
you. They thought you were OK. I told them you weren’t. The NICU doctors were present for your birth
and cleared you but I made them come back.
Easton, I knew you were sick. I
knew you needed help. I was never more
sure about anything in my life even though nobody really believed me. I wasn’t able to leave the room to go with
you but I made Daddy follow you. He
called me from the NICU and said that you were doing OK and that you were just
born too fast. Everyone was so relieved. Except me.
I didn’t believe them. There was
something in my gut that told me you were not even close to OK and they just
didn’t know it yet. I knew you. Nobody else did. As the night
went on everyone told me to rest.
I couldn’t. I kept walking from
my room to the NICU even when they told me not to. Everytime I walked in the NICU- you were
worse. You went from breathing fast, to
a nasal canula to bipap, to a Ventilator in less than 12 hours. Easton, this is where things get hard for
Mommy to tell you about. I did not know
what a ventilator was for. I didn’t know
that it can be a temporary relief for you. I thought that when a human being
went on a ventilator- they didn’t come off unless they died. When they told me they were putting you on a
ventilator- I thought that you were not going to survive. A name you have heard many times and will
continue to hear for the rest of your life is Roberta. Roberta was your nurse that day. When she realized what I thought, she came
and pulled Mommy up off the bathroom floor and put you in my arms for the first
time since you were born. She knew you
were not stable but she also knew that I needed you and I think you needed me
at that moment. I think I was able to
hold you for about one minute- but in that moment, I gave you all the support
and will and fight I had to give and I begged you to FIGHT! Buddy, that was the last time I held you for
almost three weeks. You were so
sick. They had to move all the other
babies to another room and they put up these privacy walls so that there was no
extra stimulation. I couldn’t even speak
around you. You could sometimes tolerate
the nurses and doctors speaking softly around you but every time I spoke or
attempted to touch you- your little body went crazy. This is when I knew for sure that you knew
me. You knew your Mommy even in a drug
induced coma. You knew my touch was
different from anyone elses and the very sound of my voice was enough to break
you through all those heavy meds. As
painful and devastating as it was to not hold you or touch you or speak to you-
I feel like my silent presence a few feet away gave you courage and fight. Everytime I left the room which was rare, I did
whisper to you “fight the good fight, buddy.”
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| Bi Pap |
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| Vent |
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| Nasal Canula |
There were
so many scary days but I want to tell you about the scariest day of our
life. The day I witnessed
a miracle- YOU. Easton, you were three days old. You were on a ventilator and then they moved you to a high frequency ventilator which shook your little body as it breathed for you. The settings were maxed out and they were pumping every drug they could into you. It wasn’t enough. Nothing was working. Your little body was giving up. You were gray. You were limp and there were probably 15 people working in perfect unison around your tiny body. They were fighting so hard for you. They called a helicopter to come take you to another hospital because they thought you would need something called ECMO- a heart/lung bypass machine. I stood watching you and praying so hard. I begged God to save you and I begged you to not leave me. One doctor turned around and told me that you were leaving this hospital but that you would not survive the flight to the next one. They told me you weren’t going to survive, Easy. I don’t have the words to tell you what that meant or felt like. There aren’t any words that can do that justice. I made a couple phone calls and your whole family showed up in the waiting room within minutes to be there when you left us. Then it happened. The limp baby whose SAT’s kept dropping despite all the drugs and being bagged for so long, the one who was awaiting transport- became stable. Not super stable by any means. Your o2 popped up into the 70’s again and you sort of stabilized. So much so that they didn’t want to transport you because they knew you couldn’t handle the stress. They wanted to put you back on the conventional vent, fill you up with maximum steroids and basically sit still and wait. I was staring at everyone in that rooms face. I could see the shock. Nobody had many words for us. They had hugs for me and a lot of tears in their eyes. I knew what just happened. I knew you had just fought the fight of your life.
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| Too many drugs. |
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| Willing my strength into you |
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| Paralyzed baby:( |
The rest of
your stay in that NICU was more of the same.
You had so many terrible days and very few good ones for so long. They did not give up on you and neither did
I. I sat and stared at you all day,
every day. Rooting you on from afar
because Lord knows I couldn’t touch you.
I know you knew I was there. I
know you knew I wasn’t giving up. Day
after day it was a roller coaster. You
were never really OK but you weren’t as bad as that dreaded day 3. After about 3 weeks of that, you slowly
started to turn the corner. You opened
your brown eyes. You let me touch you
and eventually, you were placed in my arms again. We made all kinds of deals again on that
day. I thanked you for fighting and I
told you all the things we were going to do with this life you fought to
have. All you had to do was keep
fighting and I would carry you through.
Me and you, baby.
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| That poor chest! |
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| Getting closer to home. |
Exactly one
month later, on your due date- you came home!
This was dramatic of course as well.
Your airway was floppy from being intubated so many times and you only
failed your car seat test FOUR times! We
finally got the OK and I had to ride in the back and try to keep your head
straight so your airway was open. So
stressful you were! We had home health
care come a couple times a week and every single time you were right on the
line for needing supplemental oxygen at home.
Have no fear, you prevailed as always and we skipped that! Thankfully.
Soon we got another surprise. You
screamed all day. Literally 23 hours a
day. You see, when you were in the
hospital you had some narcotics running in your IV’s all day long. These were to keep you calm, still and not in
pain. Your poor little body started to
really like them and then you had withdraw symptoms once you were home and
without. Here is the good news. I told you I had made a lot of deals with you
when you were in the hospital. One of
them was to not ever wish you to be silent.
On a ventilator, you could cry but it was silent and I swear it’s the
worst thing to watch, a silent cry. I
wanted so badly to hear you scream. And,
scream you did. For months on end. All the time.
I’ve never been very patient but I will tell you that I never lost my
patience. God knew I needed them and
gifted my endless patience and gratitude.
My son, you screamed in my face for months and I did nothing but love
you harder!
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| FINALLY meeting! |
There were
many other complications such as failure to thrive, muscle weakness on the left
side and pneumonia 5 times and RSV 3 times all in the first 9 months. We did occupational therapy, physical t
herapy and saw the Neurologist regularly. You were admitted into the hospital for respiratory support three times during those first nine months but guess what- you were on track and walked before your first birthday! You are the biggest inspiration of fight I’ve ever witnessed. I’m so proud of you.
We started
a charity called Team Easton Gives Back and held the first event around your first
birthday. We knew that you were with us
to make a difference and we weren’t about to let your fight go without serving
a purpose. To date, we have raised over
$100,000 for Hurley NICU and Pediatrics in your name. You are leaving a legacy, young man and I
cannot imagine where this world will take you.
This year you were selected to be the Speedway Sponsor for the
Children’s Miracle Network and you will continue to raise awareness. Six years old and already a role model.
Before I
close this letter, I want to tell you about you as a little boy. You are exuberant. You are literally full of life. Every day at school is “great!” Every gift you receive is “The best one
ever!” Every time you are sick or in the
hospital, you find the bright side. “At
least I’m only here 5 days instead of 6!”
You are tolerant of your crappy lungs.
You push them by being an active young boy but you recognize when they
need a break and you give them one. You
are not held back by them. If you find
something you cant keep up with, you simply find something new. You are full of stories and always surprising
us when “Jesus sits on your shoulder.”
We take our cues from you and we know you are here with purpose. You are a breath of fresh air and you teach
me so many lessons in this world. I
truly believe you are happy to be alive and you know somewhere deep inside your
soul- that you were given an extra shot.
Easton Edward, you changed everything and I love you more than anything
in this world. Keep fighting that good
fight, baby.
Mom
