Dear Nicholas Sparks
On
December 20, 2013 my life was completely turned upside down.
This was
the day that we found out if we were going to have a boy a girl. We had
scheduled our ultrasound for before Christmas because that year part of
my 9 year old's Christmas present was finding out if he was going to
have a little sister or brother. We found out that he would have a
little sister, a couple of hours later we found out the rest of the news
from our ultrasound. His little sister was going to be born with
Congenital Diaphragmatic Hernia (CDH). We had to wait until January 9
for it to be confirmed, because of offices being closed and shortened
hours during the following holiday weeks. I cried myself to sleep every
morning when I would get home from work, but still had to hold
everything together for my son. I couldn't bring myself to tell him
that there was something wrong with his sister. The more that I
researched what was going to be our future the more that realized that I
not only had to tell my son that his sister would be sick, but that she
may never get to come home with us. More and more time passed and I
still couldn't tell him. I was running out of time, and I didn't know
what to say. Finally about a month before she was supposed to arrive I
broke down and told him. I told him that when Sierra was born she would
have to stay in the hospital for awhile, and that she was going to have
to have surgery. I told him that she had a hole in her diaphragm that
let her stomach move into her chest and that it was pushing on her
lungs. I told him that he wouldn't be able to see her for awhile. I
also had to tell him that I wouldn't be home either because Sierra would
have to be in a hospital that was 2 hours away from home. He cried for
what seemed like forever to me, there was nothing that I could do to
comfort him except tell him that I would call him every night and come
home to see him at least once a week.
A few days later while shopping
he picked out a small stuffed bunny for her to have in the hospital,
something that would be from her big brother. Time was going by way to
fast we set up a date to be admitted and induced on April 7
we would be checking into Sacred Heart Medical Center in Spokane. This
gave me a chance to spend all of Logan's spring break with him before I
wouldn't be able to see him for awhile. However on April 4,
Sierra had a major change in plans for us. She decided that she didn't
want to wait any longer. Unfortunately we were not able to make it to
Spokane and she ended up being born in Lewiston. At 5:30 pm
Sierra Marie Kelly entered the world 8 lbs 9 oz and 21 inches long. I
didn't get to see her the MedStar team took her away to try and
stabilize her and get her ready for her first airplane ride. I lay
there not knowing what was going on if she was ok, or would be ok. As
soon as they let me get up I got dressed and went to see Sierra. The
first time that I got to see my daughter she had tubes and lines
everywhere. She looked so small and helpless, I hated to say good-bye
to her so that we could start the drive to Spokane. As we pulled out of
the hospital parking lot in our car Sierra was pulling out of the
parking lot in an ambulance. Because she was a newborn she couldn't go
on the helicopter, she had to go by ambulance to the airport so she
could go by plane. I spent the next couple of hours in the car not
knowing how she was and if she would be ok when we got there.
When we
got to the NICU we were able to see her for a few minutes before being
pulled away by the Dr.'s to talk to us about her condition. There were
so many nurses and doctors crammed into that small room there was hardly
any room to stand. They had her on an oscillating ventilator that was
causing her whole body to shake, her color looked almost blue to me.
When we went to the conference room with the Dr.s they told us how
severe she really was. They gave her less than a 20% chance of
surviving, and told us that she would need to be placed on ECMO to help
her heart and lungs recover. But with her being on ECMO there were
possibilities of other complications. While on ECMO she would have to
be on blood thinners that put her at high risk for internal bleeding
including brain bleeds, and there was no guarantee that it would work.
We signed the consent forms and were taken to another part of the
hospital to wait while she underwent the procedure. They finally took
us to a "sleep room" for the night because the procedure was taking
longer than expected, because she also had to be moved to a different
unit so that there would be room for all of the extra equipment that she
needed.
After tossing and turning for a couple of hours we headed back
to the PICU to see Sierra. Once again her room was full of doctors and
nurses, the ECMO machine took up a big part of the room. There were 2
tubes the size of my finger going into the side of her neck, one taking
blood out and the other putting it back, there were 2 IV poles that were
both full of pumps with different medications. I spent the next 15
days staring at those pumps and monitors hoping that they would
disappear. On April 19
Sierra was able to come off of ECMO. The circuit was good for 2 hours
after she came off. If she didn't need to go back on after 2 hours they
would take the machine out of the room. I spent the next 2 hours
staring at the clock and waiting for each blood gas result to come back.
At 1:15
she was still holding her own, at that point I felt like I was having a
stare down with the ECMO machine itself waiting for it to disappear. I
was finally able to breathe a small sigh of relief when it was taken
out of her room. The next day on Easter Sunday Sierra had her repair
surgery. I finally felt like we were on the road to recovery.
When
they did Sierra's surgery her defect was a lot worse than we had thought,
she only had 10% of her diaphragm, but she made it through the surgery.
I spent the next weeks sitting by her bed waiting to be able to hold
her. When Sierra was 5 weeks old I was able to hold her for the very
first time. It took a team of nurses to hand her to me because of the
ventilator and IV's. Gradually we were able to hold her more often and
machines started to disappear. After 79 days in the hospital on June 22
Sierra was able to leave the hospital and come home to us.
CDH has
changed my life some for the better and some for the worse. It made me
realize how strong I really was and how strong my family was. My son
went 2 1/2 months only being able to see me once a week and talk to me
on the every night before bed. He has a little sister that he adores
and is always worried about people staring at her or making fun of her
because of her oxygen and feeding tube. Our life no matter how screwed
up it seems at times is complete with our cherub. The endless Dr.
appointments, therapy, and feeding schedules.
Angie Kelly
Mom to a 9 month old CDH survivor.
So happy for you and your family, and especially little Sierra, that she made it home in your arms. Our Nora Grace was called to heaven after 25 days, 8 hours, and 13 minutes. Love and blessings to all of you!
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