Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Friday, February 1, 2013

Day 1: MEET KELLEN AND ROWAN




Welcome to heart month!!!  Welcome to the heart land...everyday this month I will be presenting stories of hope, fight, sadness and joy...I am beyond honored and thrilled that some amazing heart families have agreed to share their stories on my blog.  I would love to introduce to you, two pretty amazing heart warrior's and their mothers (who are narrating their stories).  I LOVE all of them...so please be inspired by the stories of KELLEN and ROWAN.  



MEET KELLEN!!!

Kellen Jackly, 2 years old, HLHS




When I was 32 weeks pregnant, we were told that he would be born with a severe heart defect called Hypoplastic Left Heart Syndrome (HLHS), essentially half a heart. He would need a series of three staged surgeries in order to survive. It was a major shock to us because up until that point, we were told he was developing perfectly, including his tiny little heart. We were devastated. From that moment, our lives changed and we knew we could never go back to what things were before that day. We could only move forward and hope for the best.

Kellen Mason Jackley was born on December 21, 2010 at Children’s Hospital of Philadelphia. Two days later, he underwent the Norwood, the first of the three staged surgeries, to save his life. It went very well and he recovered with only a few major complications. He developed a blood clot in his right atrium which was treated with a subcutaneous anticoagulant, Lovenox. Also, his vocal cords were paralyzed in surgery so he could no longer eat by mouth, as that would cause him to aspirate. He had a g-tube surgically implanted a few weeks later.  After spending 6 weeks in the Cardiac Unit at CHOP, he was discharged on January 31, 2011. 

Facing the interstage in the winter months was very challenging.  We desperately tried to keep the germs away from him but he ended up being admitted 5 times for various illnesses. Two days before his scheduled Glenn surgery, the second stage, he woke up very sick and he quickly deteriorated over the hours following. That afternoon he was admitted and preliminary tests showed positive results for RSV…life threatening to a cardiac infant, especially during the critical interstage period. I was terrified we were going to lose because it’s the worst thing he could have at such a fragile state. Miraculously, he fought through the RSV and was able to have his Glenn surgery 5 weeks later, on June 9, 2011.

The Glenn surgery went great and he was discharged 4 days post-op! A few months later, he was cleared to feed by mouth.  It was an extremely slow process but within a year, he was eating like a typical toddler and we were able to have the g-tube removed May 25, 2012, which was a huge milestone!

Kellen just turned 2 in December and to look at him, you would never know this sweet, active boy was born with only half a functioning heart.  We are currently awaiting the Fontan, the third and hopefully final surgery, which is slated for the summer of 2014. Until then, we are just trying to keep him safe and live a “normal” life as a family. His heart can never be “fixed” but we aren’t going to stop that from letting us treat him like a normal kid and give him the life he deserves…and then some J





MEET ROWAN!!!









Hello, my name is Katie St. Marie wife to Ryan, mother to Jacob (5
years old) and Rowan (6 months). Thank you for your interest in our
daughters (and family's) special story. That story began before she
was even born. We first found out we were expecting our second child
in April 2011 and were so thrilled after almost a year of trying. The
first half of my pregnancy was pretty uneventful thankfully. August
1st was my 19 week anatomy scan and big gender reveal. We decided to
have some family and our son there (he was very convinced he was
getting a baby brother!!) I left work early to get to my appointment
and felt some anxiety that I'm sure all moms-to-be feel before such a
huge appointment. I prayed that my child growing inside would be
healthy and safe. During the ultrasound I asked the tech if
everything was looking good. "everything is looking great so far"
okay. My nerves calmed a little. She made the announcement that Jake
would be getting a sister! (he argued the fact and said there must be
a brother in there somewhere!)
She continued and kept taking pictures, more pictures, focused
pictures, she wasn't seeing what she needed. She said nervously as she
grabbed the long strip of printed pics "I'll be right back" and left
the room. I panicked and glanced at my mom and said "that's never a
good sign" what could possibly be wrong that she needed to leave.
She came back in a few minutes later (an eternity) and said point
blank "I'm sorry there is something wrong with your baby's heart, you
will have to be referred to a specialist and there isn't much more I
can tell you other than it looks like hypoplastic left heart syndrome"
Ummmmmmmm..... What now? I don't know what that means. What is it,
and you have to be mistaken. Your wrong. I started crying I left the
room wiped the gel off my belly and ran to the bathroom. I came out
some time later and hugged my OB. She told me they would call with an
appt with a perinatologist and to not go home and google. (I think
every dr says that and every parent goes home and googles)
I go home, cry, scream, sunk into a black hole. I see "multiple open
heart surgeries" transplants, mortality rates and stories of babies
that have passed online. I was in denial, anger, asked "why my baby"
and the "there must have been a mistake, they didn't scan her right,
they'll see they are wrong."
I had to wait til August 4th for my appt with the specialist. Those
were the longest most agonizing days I've ever experienced. Google is
a dangerous weapon in the hands of a distraught parent.
They did a very detailed scan and measured everything.
I layed on that table trembling with anxiety and grasping onto my
husbands hands. The perinatologist came in and talked after and they
confirmed that my precious daughter did in fact have HLHS and we would
need to be followed closely by a Pediactric cardiologist as well them.
What is HLHS exactly? The entire left side of he heart wasn't there,
or was severely underdeveloped. What did this mean? Her left ventricle
responsible for pumping oxygenated blood systemically was not there.
She would not survive without surgery and medications right after
birth, and at least two more surgeries to get her heart to function
using one ventricle.
That was a hard and bitter pill to swallow. But we wanted to give this
miracle every chance we could give her.
So I went to my appointments, monthly, then weekly, then sometimes
multiple appointments in one day.
I transferred all my care to a
Children's hospital 35 minutes away and found a new OB to take over my care.
As we neared my December 25th due date I knew something big was gonna
happen. My life would be forever changed. I would have to leave my
job, we would probably have to find somewhere else to live, I would
stay at home after her birth and recovery and become a mother again
and a
nurse. I prayed that God would give me strength and guidance for this
new journey I was about to embark on.
December 12, 2011
5lbs 8 oz 18 3/4 inches long
A induced and very smooth and fast delivery (and dare I should say
easy?) my perfect daughter was born to an audience of doctors nurses
and it seemed like the number multiplied with every push.
She was here all swaddled with her hands on her cheeks and her button
nose sticking out. First part of her I touched was that button nose.
I had about 5 minutes to hold her I told hubby "snap some pictures!'
She stayed in the NICU til the morning of the 16th . Early that
morning transport came and took her down to pre op holding. Signing
the consent and seeing my newborn being taken away was so difficult.
Ask any heart parent, or any parent with a medically fragile child.
She had her hybrid Norwood surgery and came out looking great, doing
great. A week later however one of her cardiologist told me there was
a chance they would need to take her back into surgery for some
pulmonary band adjustments. They were just a little too tight after
she had settled and they would keep adequate blood flow from going to
her lungs. So December 22nd we sent her off again. This wasn't any
easier but was necessary. We finally got our "walking papers" aka got
discharged from the hospital December 29th. So scary and a blur I
thought how I could possibly care for her BY MYSLEF AT HOME WITHOUT
NURSING STAFF. She required medications multiple doses a day, getting
her weight and o2 saturations and heart rate to be charted and called
in twice a week to her cardiologist. We somehow made it 12 days at
home before being readmitted for a cath lab to have her atrial septum
widened. What was supposed to be a three day expected stay turned out
to be almost two weeks. Rowan threw a few tricks and we were reminded
again just how delicate these babies are. Seriously. A fine balance
between stable and unstable. One pebble can tip their scale so fast.
We continued on at home and finding easier ways to manage our hectic
schedules. On top of her heart issue Rowan also has severe reflux
(GERD) and could not keep down food even with her NG feeding tube. We
tried a special tube that goes past the stomach (ND) but after
multiple tubes being pulled out, MULTIPLE ER trips, Ro went in to have
her third surgery to have a G-tube and fundoplication. This kept her
food down and a longer term solution for her eating issues. We were
gearing up for her second (and largest) heart surgery. She needed to
be as plump an healthy as possible and her doctors were aiming for the
6 month mark. One thing about Rowan is that she has her own plans and
runs her own show. She has never "made it easy" for anyone but that
lends light to her feisty fighting spirit. That's what makes her so
special. She keeps you guessing, smiling, and her smiles ARE
CONTAGIOUS. The weeks leading up to her second surgery (comprehensive
stage II) we found ourself in and out of the PICU (Pediatric intensive
care unit) multiple times to get her fluid levels correct with her
diuretics. The last few weeks prior to surgery she required constant
o2 monitoring and oxygen. I was growing very anxious with the huge
surgery looming over our heads. Most everyone I had talked to in my
heart mamas (support group) said life was so much easier after the
second surgery. Your child is more stable and life calms down for the
most part. We could plan small day trips, and beach time and play
dates. We COULD get past this hurdle but we had to take that next
step.
Surgery crept up and our date was June 1st. I was scared out of my
mind pushing thoughts of doubt and uncertainty around in my head.
Would I bring Rowan home again? Would I need to order her medical
supplies for June? Do I buy her summer clothes? No one wants to think
about their living child in the past tense in that way. But it is a
very real concern, a valid fear, and possibility I would not be
bringing her home again, or to grandmas, or anywhere again.
We checked in two days early to the hospital to make sure her fluids
looked fine and to get a
Picc line placed. She was taken thursday morning but before transport
came I sat her on my lap and just prayed over her kissed her and let
her hold my face. Not to be depressing or a pessimist but those could
have been the last moments where I got to hold her and hug her and
have her love me back. A very good friend and fellow heart mom told
me to hold onto and cherish the present moments with them and don't
spend every second thinking about all the possible outcomes.
The picc placement was not successful. She remained intubated and came
back sedated. I can't hold her until sometime after her surgery. I
didn't know when but it was already too long of a wait.
June 1st was here and transport came at 7am. Surgery was supposed to
start at 9 and be finished sometime mid afternoon. Ryan and I spent
an hour in the early morning praying, crying, taking pictures, and
kissing her sweet face. It hurt that she was sedated and intubated so
we were pretty limited to what we could do with her. After transport
came we camped out in a waiting room. We got an update here and
there, she was doing fine, prep work done, on bypass, Dr. Carl came
out and talked to us about her pulmonary valve that was not looking
good, it would need to be repaired or replaced and they would
determine soon.
It's was 4:30 pm and Dr. Carl said they would have to replace the
valve and take her off bypass while the cadaver valve thawed. 6:00 pm
Dr. Carl said heart was liking the new valve much better and she was
off bypass. They would finish up and come update in and hour.
6:30 pm Dr. Carl comes out with a worried look. He is not one for
hiding his feelings very well.
"Rowan did not tolerate coming back off bypass, she is in critical
condition and will be put on an EMCO machine (machine that circulates
and oxygenates blood) so her heart can rest, she wont survive unless
shes on it. There is also a lot of bleeding they are trying to
control. We will update u as soon as possible"
10:30 they are still trying to stop her bleeding and having a very
difficult time keeping her stable
I sat on the ground hearing what no parent wants to hear. Your child
is on life support and has a 50/50 chance of pulling through. You see
the looks on the doctors faces, and you get really good at reading
people. I was angry. I looked out the big windows thinking I was
losing my life. She is my life, my sweat blood and tears have been
poured into this child and she was slipping away. I sat on the floor
crying for a long time, my family showed up my husband was by my
side. But I have never felt so alone before. No one could give me what
I wanted. My child in my arms.
I waited until after 1 am (15 hours of surgery) to hear that the
bleeding was under control and my baby was alive. PRAISE GOD. Her
fight was FAR FROM OVER. Still so many hurdles to cross, a day can go
from bad to good to bad so quickly. Blink and that's all it takes. I
am celebrating in her baby steps and small accomplishments. That's all
we have. We have to find some happiness in a room full of equipment
and machines, pumps, drugs, tubes, cords,monitors a sweet innocent
child who lies in a bed with barely a pulse, barely a heartbeat,
barely recognizable. Healing. Rowan that's all mommy wants you to do
is rest and heal. We have tried to wean a few times off the ECMO
before, unsuccessful but we are making two steps forward with every
step back. We have managed to get one cannula out of her SVC. Drs have
said they are pleased with the direction she's going but we can't keep
her on EMCO much longer. Either she goes into surgery to have
tricuspid valve repaired that started leaking again after this last
surgery and comes off EMCO 24-48 hours post surgery. Or her tricuspid
valve may look fine after some fluids come off and we will
de-cannulate her possibly Monday. We need need sweet Rowan to do this
on her own. She is so strong and has come so far and has so many more
stories to tell. We have had so many people reach out to us during
this journey, Rowan's story has caught like wind to a wildfire and is
spreading. Our support is from family, friends, an online December
2011 birth club who have been banded together since we first found out
we were expecting. Our support is also from strangers all over the
world reaching out to us, offering comfort and letters of
encouragement. Decorated hearts started showing up in the mail from
friends all over the globe. I'm hoping that whoever is reading this
can see there is light in the darkest times. We need to keep trusting
that God will see us through. Prayer does work. Sometimes it's not an
easy answer or what we feel is right or fair. But in the end God
doesn't work with statistics and probabilities. He works with the
impossible and making it possible. His plan is greater than we can
ever understand and the hardest struggle is accepting a plan different
than our own. I will never give up on my daughter. Her life has made
such a deep impact that it doesn't matter how little her footprints
are.
6/11/12 Update: Rowan went down into surgery around 12 to be weaned
from her EMCO. I watched her being rolled away almost in slow motion.
A sequence of still photos. Them rounding the corner. So many machines
to think about the syringe pumps EMCO and dialysis. No making mistakes
just slow going. She was gone just like that. We waited about 3 hours
to hear from Dr. Carl. He came in with his nurses and their faces
looked stressed. "she is not tolerating coming off the EMCO
probability 5% chance of making it." I knew then i was so close to
losing her. They left and came back 20 minutes later. I could tell
quickly it wasn't good news. I was about to ask and when I saw their
expressions I didn't need to. She was gone for good this time. I went
numb from shock and disbelief and just so many other emotions running
through my body. I cried and Ryan held me and I thought that this
couldn't be it. Everything we had known and loved in the physical form
of our baby girl was no longer there. Only memories and snapshots.
Seeing her struggle so much the last 11 days was torture. I then
almost felt peace come upon me to know she WASN'T HURTING anymore. Her
heart was WHOLE AGAIN.
I had the hospital call in my photographer Jen to come in and get some
of our last moments frozen in photos. A few minutes later they brought
me to the room she was in. A pink pj and a pink and aqua blue blanket
with mermaids. No tubes no wires no cords. Nothing. A moment of
silence and I just stared at her beautiful face. She looked so
peaceful, finally my baby was healed. Just it wasn't her earthly body.
I held her, caressed her face, kissed and smelled her knowing these
next few hours would be it. We got lots of pictures and I'm so
grateful for them. They bring more comfort than those of her on life
support.
I know that in the 6 months my daughter was here were complicated,
frustrating at times, stressful, and ask any heart parent, a very
bumpy ride. But more importantly it was a life changing experience
than most people don't ever go through. It was beautiful, she showed
me compassion, and a type of love I didn't know I was capable of
giving. She opened my eyes to a whole new world of strangers who
became friends that shared our journey, worry and sorrows and
accomplishments. She brought so much joy to me it didn't matter that
it took more of my time and energy to care for her. I would do it 100
times over just to spend more time with her.
I've said it a few times that living the last few month on high
octane, then losing her, going home without her, living my life
without her is like jumping out of an airplane one minute, and then
finding yourself fishing on a riverbank. How do you recover from such
a high adrenaline experience to nothing? The silence is what really
gets to me. So quiet and still that the silence itself is loud and
obnoxious. No more alarms beeping at me, no meds to give, no more
packing an arsenal of supplies to go to dr appointments. No more baby
to tuck in at night next to my bed. No more coos and babbling. Rowan
passed at 3:12 pm and I knew God took her at the moment she needed to
earn her wings. Those are her and my numbers. My birthday is 3/3 and
hers is 12/12.
6/12 - She would have been 6 months old a day later. I celebrated
every week then month of her life so it only felt right to celebrate
her 6 month mark. Quickly organized, we had some friends and family
come over and released 183 balloons in pink red and white. Each
representing a day we had with her. To each balloon we had tied
messages from friends family and strangers. We let them go and
watched them until no longer visible. They faded into the blue and
drifted up to heaven just for her. That night we had a huge
thunderstorm and I thought of my little angel popping them with all
her angel friends. They must have
thrown quite a party for her.
Her memorial was the next weekend and was I think the most beautiful
memorial ever(I don't like saying funeral). It was perfect and we
compiled a 20 minute slideshow showing her life from a positive
pregnancy test to her balloon release. Life celebrated even though it
was 6 months I think her spirit was too free of a spirit to stay
longer. God sent her here with a special job and my angel only needed
6 months, 183 days to do what God called her to do.
I miss her terribly, everyday brings a new challenge of dealing with
grief and picking up the pieces of our lives an making them fit
without her here. I know eventually over time they will fit easier,
and slowly our new normal will take shape. I'm not angry at God. He
entrusted me with the most precious gift of all. Taking care of an
angel on earth. He is taking care of her just as He is of me. Her
life though short was sweet and unforgettable, just as I hope her
story is.





1 comment:

  1. Thanks for doing these Jackie. Kellen, you are so cute in that suit!! Rowan, I cried when you passed away and while I read this story. thanks for sharing xoxo

    ReplyDelete