Dear Ada,
This book is a special book—a book about you! Today you are 4.5 years old, but you are very
excited for your next birthday. You want
to count how many days there are until your birthday, and each time you make a
new friend, you wonder if they will come to your birthday party. It is hard to move to a new place and it
takes time to make friends. I feel just
like you- sad and lonely some days and missing Littleton and our friends and
family there. But some days we have lots
of fun with family here and have fun new places to see and exciting new things
to do. Remember our trip to Duluth? You had so much fun swimming in the pool and
singing by the lighthouse—and James had so much fun throwing rocks into Lake
Superior, remember?
I am proud of you for so many things. You are a very brave, strong, loving, and
intelligent little girl. This book is
the story of these last five years of your life and will help to explain why
Daddy and I are so thankful for your life and proud of you for persevering
through difficult times.
And remember Joshua 1:9…
CHAPTER ONE: Mommy’s Ultrasound
When you were still in my tummy, Daddy and I went to the
clinic to get an ultrasound, which is a fancy machine that can take pictures of
babies in their mommy’s tummy even before they are born! We were so excited because we knew that on
that day in the end of January 2011, we would find out if you were a boy or a
girl! We couldn’t wait!
As the technician took the pictures, she checked off boxes
in her computer, checking to make sure that she could see every little part on
your body as it was forming. The Bible
says that God knits our body together while we are in our mommy’s tummy. He puts us together! The lady looked over at us and exclaimed, “Looks
like it’s a girl!” We were so excited!
It was such a great surprise. And
we already knew what name we would choose for you--- Ada June. What a lovely name for our sweet baby girl!
The technician kept taking pictures of you and checking off
boxes, but she was pretty quiet. Daddy
and I got quiet too and started to feel a little bit nervous because the lady
didn’t seem very excited. I noticed on
her computer that there was one box that she filled out a little differently
than the rest – she put a question mark in the box by “4 chamber heart”. I was scared.
We left the clinic and I cried as I hugged Daddy. I was worried that maybe something was wrong
with my baby’s heart.
The next morning, we had auntie Rachael and Grandpa Phil and
Grandma Kim over for breakfast to tell them the news that we were having a
little girl! We knew they couldn’t wait
to find out, either. We made wild rice
pancakes with pink whipped cream so that they would see the pink and know that
you were a girl!
While I was flipping the pancakes, my phone rang and it was
my nurse. She told me that the doctor
had looked at the pictures of my baby and would need to see me again because
something was missing from your heart.
Daddy and I talked and cried and went back to a different doctor that
day, a perinatologist. That is a doctor
for babies who are still in their mommy’s tummies. Dr. Stark was his name- he was working not far from where we were living. He was very talkative and kind, but he told
Daddy and me that having a baby with a special heart was going to be a very
hard thing. He told us to find people to
help and support us. Dr. Stark gave us
some very important advice and I believe that Jesus used him to remind and encourage
Daddy and me to ask for help when we needed it, and to love each other well
even in hard days.
The next day we went to another doctor, one that you
remember- we met Dr. Nydam! She was kind and loving and took time to
explain everything very well to us. I
had an echocardiogram – just like you are used to but since you were in my
tummy, they used their wand on my tummy to find your heart and take pictures
that were very detailed. But they didn’t
let me watch a movie like you get to and I didn’t get a toy when we were
done. But that is okay! Dr. Nydam is a pediatric cardiologist – a doctor
that specializes in looking at children’s hearts. She was the one to officially diagnose your
heart, telling us how it is different and what would need to be fixed. She used a lot of very big words, but she
explained things well and made sure we could understand what she was
saying. She was a very special doctor to
us, and we miss her a bunch.
I will show you a couple pictures here – a picture of what a
heart looks like if you were to open it up, and then a picture of what YOUR
heart looks like. A normal heart has
four rooms, two rooms stacked on two rooms.
The top rooms are called the right and left atria, and the bottom rooms
are called the right and left ventricles.
Big words, right? We can study
the pictures together and you can learn all you can, just like Dr. Nydam did
when she went to school, and just like Daddy and I did after we learned about
your heart. The picture of your heart
was sketched by another doctor! You sure
have had a lot of great doctors in your life!
His name is Dr. Miller, and he works with Dr. Nydam. He was the cardiologist that was on duty on
the night that you were born. He knew
that I was about to give birth, so he rushed over to the hospital, and was
there to do your first ever echocardiogram, when you were only a few minutes
old. He sketched out a picture of what
your heart looks like, and then gave it to Daddy and me to keep!
Hearts are amazing organs.
As I have studied the heart a little bit these past few years, I am
amazed that babies can be born with such complex parts working together
perfectly! God has designed us so
wonderfully. Psalm 139 says that we are
fearfully and wonderfully made and I believe it. After meeting with Dr. Nydam that first time,
she explained that you, our sweet baby, had a “complex congenital heart defect”. What that means is that there are quite a few
parts of your heart that either didn’t form at all or that they were mixed
around from the way that they are put together on a normal heart. I will explain them now and even if you don’t
completely understand them all now, you will have this book to look back at
some day when you are curious.
First of all, your heart has two holes in it that aren’t
supposed to be there. I hope you don’t
mind me talking about your heart this way- you have a heart that is special,
unique, different, and I believe that because of it you are the person that you
are. You are brave, and you have
persevered physically to overcome difficulties that other kids haven’t had to
do, and even without knowing it. There
is normally a wall between the right and left sides of the atrium and the
ventricles, but in your heart there is a hole in each of those walls. That means that the blood that is pumped into
your heart from your body that needs oxygen can mix with the blood that is
coming from your lungs full of oxygen, so that is kind of like mixing a cup of
water with a cup of milk. It is all
still helpful liquid, but the milk is not quite so rich. And your blood is not quite so full of oxygen. Some children are born only with this heart
defect, and so what the doctors do is to go in and stitch up the holes. But in your heart, the holes are actually a
good thing because of the other defects!
When I was pregnant with you, I still was teaching a
little bit
and I remember a mom of one of my students coming up to me and telling
me that she was praying for the holes in your heart to close while you
were still in
my tummy. I was kind I hope, but I was
frustrated, because she didn’t understand your heart enough to know that your
heart needed those holes to stay open- wide open!
God knew what you needed, and thankfully didn't answer that lady's
prayer. There is a life lesson for you - sometimes God answers our
prayers with a "no" because He knows better that we do about what needs
to happen.
Another part of your heart is that the tricuspid valve didn’t
form. It is the one way valve/door from
your right atrium to your right ventricle.
Since your heart doesn’t have an opening there, ordinarily it would mean
that the blood that is coming back to your heart from your body – blood that
needs to have some oxygen after working so hard – would get stuck and wouldn’t
be able to get to the ventricle so it could get pumped out to the lungs for
more oxygen. But since you do have
holes, it meant that in those early months of your life, you were able to do
fairly well! Blood that needed oxygen
could get to the ventricle to be pumped out to the lungs through the sneaky
passageway into the left atrium, then down into the left ventricle, then pumped
out of the heart towards the lungs and that sweet, sweet oxygenation! This is a condition called Tricuspid atresia,
or another label for it is Hypoplastic Right Heart Syndrome.
And there’s more! You
were also formed with another condition called Transposition of the Great
Vessels! On the top of your heart there
are two main blood vessels called the aorta and the pulmonary artery. The aorta brings blood from the heart to the
body, and the pulmonary artery brings blood from the heart to the lungs. In your heart’s amazing anatomy, these two
vessels are switched around, attached on the opposite sides of your heart. So your pulmonary artery, instead of coming
from the right side of the heart actually comes from the left side of your
heart.
Finally, near where it attaches to your heart, there is a
narrowing of your pulmonary artery. This
is called pulmonary stenosis. And there
you have it, my Ada June. These words
are big, and may be hard to understand today.
I have to study hard to remember it all, too, but as you look at your
chest and see the line there from your surgeries, I want you to remember that
God was with you from the very beginning.
He made you just the way that you are and has a plan for you. The day after our ultrasound, I was reading
in the Psalms, and the reading for the day included these verses:
“Yet
you brought me out of the womb; you made me trust in you even at my mother’s breast. From birth I was cast upon you;
from my mother’s womb you have been my God.” Psalm 22:9-10
I cried when I read the words. And I knew that they were true. God has been your God from day one. He is the one that we can trust throughout all
the tough times in life.
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