March 21st,
the happiest day of our lives. After 7
years of trying, a long road of IVF and miscarriages, we were ecstatic to learn
we were pregnant with triplets. At week 6, we lost the first one and at week 10
we lost the second. We wondered if our 7
year trend would continue and lose the third.
He proved early on that he is a fighter and on November 21st,
2011, we welcomed our baby boy. He was
just perfect! Brown hair, blue eyes, 10 fingers and 10 toes. But little did we know Max had some “hidden”
birth defects that have turned our lives upside down. Max was full term, but a tiny 5 pounds 7
ounces and 18 inches long. The day after
he was born, he was transported to WakeMed of Raleigh where he underwent
surgery to repair his imperforated anus (scar tissue covering his anus). He spent 8 days in NICU recovering. During this time in NICU, the doctors also
detected hypospadias (opening of the urethra is on the underside of the penis),
ASD (hole in the heart), heart murmur, possible tethered spinal cord and an
increased pressure in the lungs. Needless
to say, this was all overwhelming and we figured Max’s first year was going to
be a difficult one but we could get through it.
As time went
on with multiple doctor appointments and follow ups, we began our routine with
sleepless nights and all the joys of parenthood. On December 22, we went for a follow up
appointment to the cardiologist. I heard
the news no parent wants to hear; “Max needs to be admitted to the hospital
immediately!” His pressures in his lungs
had increased tremendously and Max was days away from a heart attack. The first
thing that came to my mind was, Max is going to spend his first Christmas in
the hospital. He had already spent
Thanksgiving in NICU. Max was admitted
to UNC Children’s and began his oxygen therapy and taking Sildenafil (Viagra)
to decrease his pressures. Max was
officially diagnosed with Persistent Pulmonary Hypertension of Newborns. Max spent 9 days in the CICC unit (Children’s
Intermediate Cardiac Care), which by the way has the best nurses in the world!! They all fell in love with my Maxi! It must be those blue eyes and super long eye
lashes. During this time Max underwent a
cardiac catheterization to determine any heart abnormalities or
obstructions. Everything looked normal
although his pressures were high. The
doctors discharged Max on December 29th and we took him home on
oxygen 24 hours a day and various medications.
Over the
next few weeks, Max began to show a decrease in eating and stopped gaining
weight. At his 2 month check-up, he
still only weighed 8 pounds 4 ounces.
The pediatrician became very concerned and we were sent back to UNC
children’s on January 26th. A
feeding tube was placed in his nose and he was put on 24-calorie formula to
help him gain weight. Another
echocardiogram was performed to measure his pressures in his lungs and he
finally had a significant decrease. We
were prepared to take him home. I
learned how to insert the feeding tube and start his continuous feeds. Who knew…I was now a wife, mother, teacher
and nurse!! We were finally discharged
on February 1st. I placed my
baby in the car seat and we were on our way.
I pulled in the driveway excited as could be until I turned the car seat
around. Max was blue, unresponsive and
his eyes were rolled back. My heart sank! We immediately called 911 and I just held my
baby in my arms, praying and telling Max to please not leave me. He was still breathing so I was unable to
perform CPR. EMS was there in 3
minutes. They placed Max on the floor
and gave him an abdominal thrust and he finally let out a cough. Max was immediately rushed back to UNC. As I rode in the passenger seat of the
ambulance, I continued to look back at my baby and wondering if this was the
end. When we were in the emergency room,
Max quickly returned to his normal behavior.
Max was admitted to the Pediatric Intensive Care Unit (PICU). He was stable although Max’s pressure
increased to a dangerously high level. We
assumed this was an episode due to reflux and there was no way we were ever
prepared for what the doctor was about to tell us, “Max is showing signs that
he is dying and you can take him home and just make him comfortable.” With weak knees and tears streaming down my
face, I couldn’t believe what I was hearing. This doctor was very negative with horrible
bedside manner. We explained to the
doctor that dying is not an option and Max is a fighter.
On February
2nd, we had Max baptized in the hospital. Family came from all over the country to see
Max and await his results of another echocardiogram and a second cardiac
cath. On February 5th, Max
had another echocardiogram that showed his pressure in his lungs going back
down in the right direction. This was a
great day. Max was continuing to smile,
coo and show everyone how much fight he had in him. All things changed on Tuesday, February 7th,
2012. Max had another cardiac cath. After a 4 hour procedure and family anxiously
waiting for the results. The doctors
walked into the room and asked us to follow him to a conference room. I put one foot in front of the other with a
knot in my throat and butterflies in my stomach. We sat down and I noticed the nurse place a
box of tissues on the table. I knew
right then, this can’t be good. The
doctor proceeded to tell us that they finally found the cause of Max’s
pulmonary hypertension. Max was
officially diagnosed with pulmonary vein stenosis. Pulmonary vein stenosis is a rare and serious
condition in which there is an obstruction (blockage) in the blood vessels that
bring oxygen-rich blood from the lungs back to the heart. The doctor explained
to us that they can do a surgery but it is a short term fix that will only give
Max a month or two. Our other options
are a double lung and heart transplant.
As I am listening to this, I was completely numb with no emotion, just a
blank stare. The doctor proceeds to
explain that he is going to contact the two best transplant hospitals in the
country, Michigan and Pittsburgh. He
also explains that Max probably has only 6 months left untreated. And to top it off, he tells us Max can’t cry
and get too upset and agitated because his pressures will rise, heart rate will
become rapid and he will turn blue. At
anytime, he can go into cardiac arrest.
With all of
this news, the family starts thinking of all the ways we are going to get
through this. The determination and the
fight for Max began. Now we wait to hear
from Michigan and Pittsburgh. The very
next day was the worst yet. The cardiac
cath took a toll on Max. He had a small
reaction to the anesthesia and was in pain.
He began crying and I couldn’t calm him down. I watched my baby turn gray and his eyes roll
back. He was struggling to breathe. The nurses called rapid response and about 20
doctors and nurses came into the room.
Max was taken to the Pediatric intensive care unit. He was intubated and pumped full of fluids. The doctor took us into a room and explained
that Max has now had another episode. He
also tells us Michigan said no to taking on Max's case. Pittsburgh was also not very optimistic in
Max receiving a heart and lung transplant in time. The wait for a lung transplant is one to two
years. Once again, our hearts were
broken and we began losing hope. With
this news, family and friends began researching and came across Boston
Children’s Hospital specializing in Pulmonary vein stenosis. We present it to the doctor and he gives
Boston a call. We all continue to pray
for a miracle.
On Friday,
February 11th, 2012 we received the best news so far. Boston has accepted Max’s case and is very
optimistic in treating his pulmonary vein stenosis. Over the past year, they have performed surgery
to correct the veins and then give doses of chemotherapy to prevent the scar
tissue from growing back. No transplants
needed. So far 6 babies and children
have had this procedure done and all 6 are still living and well. This is a risky and experimental surgery with
no guarantees. We look at this as,
no-one is guaranteed tomorrow! This is
Max’s only chance at life. Max is still
in PICU and remains on a ventilator and sedated. He is resting his lungs and heart and getting
continuous feeds 24 hours a day. He
continues to show all of the nurses how much fight he has. They often have to double up on his sedation
medicine because he wakes up and fight the tubes. He also has to be swaddled very tight because
as soon as he gets his arms free he is ready to pull at the tubes. We are
extremely excited, scared, anxious, overwhelmed, hopeful and a ton of other
emotions. We are just diving into this
with the upmost optimism that our beautiful baby boy will have his fighting
chance. Max has been fighting since day
one and he is continuing to fight. Max
is going to be transported to Boston Children’s and we are going on a journey
of a lifetime to witness a miracle!!
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