miracle~ Ava Elizabeth
Ava is my third daughter. I
was thrilled to be expecting but had a strange sense
that was unsettling. I was measuring four weeks over
(20 wks at 16 wks.)and told my doctor I wanted an ultrasound
to make sure everything was alright. She assured me
I was over reacting. Yes they found Ava's LCDH right
away but wanted a bigger hospital to determine her final
diagnosis. I was sent to the University of Iowa Hospitals
where they confirmed my doctor’s diagnosis. They
gave her a 20-35% chance of survival. They offered to
terminate the pregnancy. (This did not seem like the
answer for us.) I was so shocked I had him repeat it
three times. I was beside myself to put it lightly.
I cried for two days and then set my mind to finding
the best hospital for CDH care. I never wanted to look
back on Ava and wish I would have done something more.
Out of the four hospitals we were looking at, the hospital
that we chose was CHOP. To raise awareness and also
give us added money we had a benefit in Ava’s
honor. I also got a hold of our local newspaper and
they did a story about Ava and CDH. CHOP was extremely
far away (16 hours) but we put our lives on hold and
eight weeks before her birth we moved to the Camden,
NJ RMH. What a great place! Our older two children came
with us and we did a lot of fun things. I kept reminding
them that I loved them and we were doing all that we
could to save their baby sister. We hope she would come
home to Iowa with us but the odds were really against
us. As time grew closer my husband flew the girls home
to live with grandparents. It was so hard to say goodbye
to my babies and not know if they would ever get to
see their sister alive. Plus not being able to tell
them when they would see me again was one of the saddest
things I have ever had to do. I kept reminding myself
Ava needed the best CDH care. She arrived on Thursday,
August 31, 2006. I was scheduled to be induced the very
next day. I had a talk with her and we agreed that August
was a good month. (Both her sisters were born in September!)
I had her vaginally. She had the most beautiful pink
color skin I had ever seen. She was a good size too.
She did not take a breath and we did not hear her cry.
She was whisked away and immediately vented. Ava had
a very difficult time controlling her blood pressure
and had to be on Dopamine and Dobutamine. The first
time she opened her eyes was on September 6th. I had
to leave the room because it was too much for me to
bear. Her little eyes were so penetrating and were screaming
for my help. Ava got these horrible hiccup type things
that started in her abdomen and would go to her throat.
I was so terrified by this. It shook her entire body.
I insisted that they make them stop. A huge mistake!
They gave her the drug Pavulon this paralyzes your entire
body so that the ventilator can do all the work for
you. This made Ava's vitals drop and that night we almost
lost her. The doctors kept putting off surgery because
she was so unstable. She avoided ECMO on three different
occasions. She had to be on the oscillating ventilator
twice. Finally they decided on Sept. 12 (13 days old)
that she was ready. The normal procedure was to give
the babies Pavulon the night before surgery to let them
rest. Ava once again went ballistic with this drug.
So surgery was a held off till the next day. My husband
and I felt poor Ava was trying to hold on but was getting
weak with all this stress they were putting on her tiny
body. Her surgeon Dr. Adzick agreed that we would wait
till a few hours before surgery to give her the Pavulon
drug. I begged him not to try this again as I felt she
was severely allergic to this medicine. So against my
warning they gave it to her again right before her repair.
She responded the same as before. They proceeded with
the surgery although one doctor had to hand bag her
the entire time. Her repair took two and a half hours.
Dr. Adzick explained to us that Ava had no left diaphragm
or no muscle around her esophagus. He used a gortex
patch and built her muscle that was not there. He concluded
to tell us, she had her stomach, large and small intestines,
spleen and a large part of the left side of her liver
had been up in her chest. Her heart was still way over
on her right but might move a little with time. But
the surgery was a success. We were so relieved. The
days and weeks following her surgery were all an up
hill climb. It seemed her body was telling us, "Finally
I can heal and get better!" That is exactly what
she did. She was extubated after twenty-nine days on
the ventilator. What a glorious day that was. I chanted
over and over to God (out loud) while they were removing
the tube. "I believe, I believe!" The next
day Ava was breathing 21% room air. Prayers do get answered!
Her next battle was the feedings. They did a stomach
study and told us she had severe reflux. She was put
on medicines (Prevacid and Reglan) Eating was difficult.
She had a hard time sucking and swallowing. I was bound
and determined to get her to nurse. Days later she did.
We left the NICU after six and a half weeks. She came
home on a heart and lung monitor and an ng tube. She
no longer needed the tube so we stopped it after eight
days of being home. Her nursing got better and the reflex
was gone. She gains weight very slowly, averaging about
a pound a month.
As of today, Ava has no delays.
She smiles, plays and rolls just what an eight month
old should be doing. She is still under weight in the
3% but she is thriving. She is on Diurel and Potassium
but will be totally weaned, meaning “no”
meds at one year. We battled our first sickness in March.
The pneumonia was watched with a five day hospital stay,
including croup tent, antibiotic shots and breathing
treatments. We are counting our continued blessings.
I never imagined she would come this far. It is so strange
to be told your child will not survive and then go through
all of this and have a normal (who is normal?) baby
is beyond me. I owe it all to God.
It is so terrifying to find
out your child has little chance of survival. The reality
is you have no control. This is a very hard thing to
accept. I am a huge believer in God and I have faith
to believe he will give us no more than we can bear.
I questioned God so many times during our CDH journey.
It is so hard to find peace in such a desperate time,
but that is exactly what I did. No matter what the outcome
I knew I had to give Ava a fighting chance. She was
worth ever second of hard time we would face.
The thing I can't stress enough
is how you have to find HOPE. There is nothing too hard
for God. Miracles still exist. Prayers get answered
and decisions become the only thing you can control.
Stay positive and focus on the things you can change
and hand God the things that are beyond your control.
This is not the end, only the
beginning. We were given bad odds but Ava defied all
things. She had a rough start, we almost lost her three
different times within the first two weeks but she was
such a fighter and had a determination I have never
seen before. God not only made Ava survive but made
her absolutely normal. To this day I am amazed at her
will to survive. Don't give up, these tiny babies need
us. They need our love and compassion. We are their
~ Terri Helmick~
Born~ August 31, 2006 @ Children's Hospital of Philadelphia
Estimated birth weight~ 7.7pounds Length~ 23 inches
Parents of Ava~ Terri and Brian
Ava has two older sisters~ Lexis Alise-8 and Emeline
Website~ avahelmick at carepages.com
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.