After your first surgery, we returned home to our little
apartment and watched you very carefully.
We had frequent visits to your pediatrician and to your cardiologist, as
they wanted to make sure that your surgery had been effective, and that you
were healing up in a good way. We
noticed almost right away that you had a MUCH easier time with eating and
growing. You could drink bottles more
quickly, and didn’t tire out by the end of them, and that meant that you put on
some good baby weight and you were able to start sleeping all the way through
the night because you were not waking up hungry after a few hours! (Before the surgery we would feed you even in
the middle of the night, though it might mean waking you up, because honestly
you drank a little more at night when you didn’t have as many
distractions! That meant that Daddy and
I weren’t getting as much sleep because we felt that we needed to get up to
feed you so that you would get extra calories and grow big and strong for the
surgery.)
Every month for the first two winters of your life we
brought you in to the clinic to get a Synagis shot. It is a special medication that is only given
to babies and toddlers who would get very sick if they got a certain sickness
called RSV. We knew that you needed to
stay healthy as much as possible, so every four weeks you got a shot. You didn’t like the shots, and because you
were so smart you knew as soon as we were in the clinic what was going to
happen and you would start getting fussy.
But at the same time, you were very brave. We had to bring you and hold you during the
shots, though it made us so sad to see you hurting. We knew that this was another thing that was
a little painful for you, but it would be much better for you to go through the
shots than for you to get RSV and get very scary sick in the hospital.
The shots were very expensive. After a nurse at your
pediatrician’s office didn’t believe me, I had to go back and look at the
information I got in the mail. Each of
the five shots that you got each winter were $15,000. That is a very, very big number. I don’t know why they were so expensive, and
I think it is a little bit of a game between the people who make the important
medicine and the people who sell it to the clinics and the insurance companies
who help to pay for it. But we are very
very very thankful that we had insurance during that time, so we were paying
very little for each shot, maybe only $50 or $100.
In the spring of 2012, Daddy started to work
at Starbucks part time as well as the painting business that he had done for
many years. He enjoyed that experience
and the people he met and the yummy coffee he could drink, but what it meant
was that he was a very busy guy. He
loves you so much and loves me so much that he did whatever he needed to do to
make sure that we were cared for.
Insurance is a boring thing to talk about and write about, so I won’t
explain it all now, but just know that Daddy has worked so very hard so that we
could give you good medicine.
Christmas of 2011, a month and a half after your surgery, we
celebrated in Colorado. You were still
under lifting restrictions, and we didn’t think that we should travel with you
in the carseat for a long journey to visit Minnesota. That December, my friend Ninfa came over to
our apartment with a couple gifts that had come to the school office. It was the school where I had taught for many
years, the school where Mimi Kim works.
Someone had dropped off some food and gifts for us and a cute little
ornament – a round white ball with a picture of a bird painted on it. The next day, we got another package with
another little ornament with two birdies painted on it. By the third day and the third ornament, I realized
that something was happening. We were
getting gifts for the 12 days of Christmas!
Remember that song? “On the first
day of Christmas, my true love gave to me, a partridge in a pear tree!...” What a special gift! All in all, we received a lot of yummy food,
gift cards, money, and sweet presents that Daddy and I and you would love. Twelve days in a row, anonymous friends who
loved us and were very generous dropped off gifts at our apartment. Those past months of 2011 had been very hard
and it was such a blessing to see and feel loved by so many people in our
lives.
January 2012 we moved into a sweet two story house in
Parker. It was more space for our
family, and it was a house that belonged to a friend of Daddy’s. It was
such a nice home. You had your own room
again upstairs and it is in that house that you first walked, said your first
word, got your first tooth, and other exciting things. In all, we lived in that house for a year and
a half. There was a big field in the
back of the house and we would walk around and look at ants and bunnies and you
would help me to water the plants on our patio.
Once spring rolled around into summer, Daddy was working so
very much. Some days he would wake up at
4am, drive to Starbucks and work from 5-9, then head to the painting job until
it started to get dark out. Other times
he worked in the evening at Starbucks after painting a long day. On those days, I would try to either bring
you to visit him at Starbucks to say hi, or bring by some lunch to him with you
on the painting job, so that he would get to see you. You would go to bed around 6pm every night,
so that wouldn’t give Daddy a lot of time to see you and play with you.
Other things that we did in those days were to go to the
Parker library storytime, or play at a park, or spend time with friends from
our small group. You were very social
and enjoyed being with people. We had to
be pretty careful though about germs. We
knew that because of your heart we still really needed to try to keep you
healthy if we could. That meant that
anytime we wanted to go to someone’s house, but found out that they were a
little sick with a cold, we had to stay away.
Also, until you were 2, we really didn’t put you in the church nursery
and I didn’t work outside of the home so that we wouldn’t need to put you in
daycare. Daddy and I often took turns
going to church services, while the other was with you, so that we could be in
church, but so that you wouldn’t have to come in contact with germs in the
nursery. It was lonely for us sometimes. Again, I wanted to act normal and pretend
that I didn’t care about germs.
Sometimes people say that when you are surrounded by germs and when kids
eat things off the floor, it makes them healthier in the long run because their
bodies get stronger. Well, even if that
may be true, I didn’t relax in those years, and we sheltered you from what we
thought could be dangerous to your body and your heart. And I will say this: from the time of your
first surgery to the time of your second surgery, you weren’t hospitalized even
once. And there was only one time a few
months before your second surgery that you needed to have oxygen at home when
you had a cold. Doctors told us that it
was pretty amazing. Thanks be to God, I
say. We worked really, really hard to
keep you healthy, and said no to a lot of fun things with people so that you
would be healthy and safe, and it worked!!
I said that I didn’t work outside the home, and that is
mostly true. I taught some piano and
voice lessons in our home, and Mimi Kim came to babysit you on those days. Both of you had so much fun together! I also began teaching a voice class once a
week for Christian Youth Theatre, which was a nice way to still be a
teacher. I missed teaching and planning
lessons and having students in my life, but as soon as we knew about your
heart, even before you were born, we knew that I would stay with you to take
care of you. This is a hard decision for
mommies and daddies that some day you may need to face if you have a family and
little ones of your own! I am so
thankful that I have been able to be with you to watch you grow and teach you
about the world each and every day! We
have had almost no days away from each other, and I find that I miss you
bundles on those rare moments when I am separated from you. At times, it has been hard for me to not be a
teacher anymore. But when I try to write
out the things that I miss that I have traded in for time with you, they seem
like not a big deal. And some day I
think that I will teach again. Also
added in to the fun of the Parker house was that it was there that I started to
take care of RJ a couple days a week, and he became your little buddy.
When the house we were renting was needing to be sold, we
moved again, this time to a cute little house in downtown Littleton, only one
block away from a lot of fun shops like the candy store, the chocolate store,
the ice cream shop, the spice shop… What a fun neighborhood! We went on many, many walks when we lived
there. Daddy started working for GPRS
that year, and his schedule got a little less crazy than it had been during his
time at both Starbucks and painting. You
were two years old when we lived in that house, and you were learning to talk
and sing. Nonstop fun with you! We knew that you would tire out more quickly
than other children because it was like you only had half of a heart that was
doing all the work, but let me tell you: you could fool a lot of people! Endless energy from morning wake-up to
bedtime. You gave up napping pretty
early, and so it was in this house that we taught you about resting time. You do so well with your afternoon quiet
time, and it is the only way that I can keep up with you, by taking a rest then
too!
James was born almost a year after we moved into that house,
but for a couple big reasons, we decided that we needed to move again. The house was so, so cute, but it was very
old and we discovered during the winter that it didn’t have a heater that kept
the house warm enough. When the winter
was very cold, there was nothing we could do to warm up the house enough so
that we would be comfortable, and we didn’t want our little babies to have to
sleep in a cold room. So when the man
who owned the house decided to sell it, we decided not to try to stay. What a wonderful decision!
When James was three weeks old, we moved into our last
Colorado house – though we didn’t know it would be our last house then! We had wonderful friends who came to help
move us and clean out the old house. You
have a lot of great memories from our house on Rowland Place. Our next door neighbor girls turned into some
great friends for you, and you had such great times playing in the cul de
sac! We went on walks by the Platte
River when the weather was nice. Cooper
and Braden gave us their double stroller, so you were able to ride at the same
time as James. In that year, we started
to notice more how tired you would become just by walking up a hill or running
for a half a block. I don’t know if you
could sense how tired you were or how hard it was to keep up with others,
because you had never known differently.
You have always worked extra hard, without knowing any alternative.
In January of 2015 you came down with a cold, and Daddy and
I watched you very carefully. We saw
that it was tougher for you to breathe because of your cough and congestion, so
we brought you in to the pediatrician to get checked out. The nurse who checked your oxygen levels that
day found that you were in the upper 70s, which is too low. They put you on a tank of oxygen with a mask
right there in their office, and we brought it home with us. Later that day we received a big machine at
our house for concentrating oxygen and putting it into tanks that we could keep
filling up. You also got a big bunch of
plastic tubing that was very long – it could reach all the way from the machine
down to your bed, and almost all the way into the kitchen or onto the back
deck. Good thing our house wasn’t any
bigger! You didn’t let the oxygen slow
you down. Daddy would wear it on his
back and walk beside you on your tricycle when you were playing with the girls
in the cul de sac. The teachers at
church would carry it around so that you could still go to Sunday school and
Bible study and MOPS. We also went out
and bought that finger checker so that we could know how your blood oxygen
numbers were at any point, day or night.
We found that it was hard to keep you much higher than the mid 80s while
you were on oxygen. But we realized that
we had not been able to check your numbers for many months, so perhaps your
normal was much lower than we thought it had been. In any case, you were on the oxygen for about
3 weeks. We went in to see Dr. Nydam in
March or April, and she told us that it looked like it was time for the next
surgery. Originally we thought that you
would have this next surgery, the Fontan, when you were around 3 years old, but
honestly – when you turned 3, you still had been operating so well and your
oxygen numbers were high enough that Dr. Nydam let you keep growing and waiting
on the surgery.
We decided that we would wait until the end of cold and flu
season for your surgery but in the process, your auntie got engaged and we
needed to think about when we would have a chunk of time when we wouldn’t need
to go anywhere. Since her wedding would
be in June in another state, we decided then that it would be a better plan to
wait until after the wedding, as we weren’t sure how long you would need to be
in the hospital. You were a chipper girl with plenty of
energy, though your energy came in little bursts. I wished that I could know more of how you
felt on a regular basis. I would
sometimes feel pretty sad when I saw you struggling to keep up or breathing
hard after running around and playing a game.
So now we knew we only had a little bit of time to wait for
your surgery.
And this is when life got REALLY crazy. Daddy’s work offered him a job in the state
of Minnesota. They wanted someone there
quickly, and so for a week or two, he and I prayed and talked about it. It was not my favorite timing. I loved our home and our small group and our
friends and family in Colorado. But I
also missed my home in Minnesota and my family here. In the end, we decided that it was a good
opportunity for Daddy and our family, and so he said he would start working for
GPRS in Minnesota. So, beginning in May,
Daddy would fly out to Minnesota every Sunday night and work there for a week,
and then fly back to Colorado on Friday night to spend the weekend with
us.
He did this for about 6 weeks, and
it was very hard. It was hard to explain
to you why Daddy needed to keep going away.
He worked very hard, and we stayed busy in Colorado with our normal
schedule. Weekends were special to all
be together.
In the beginning of June, we went to Montana for auntie
Rachael’s wedding. It was a very special
weekend and I am glad that you were able to be a part of it too! At the last minute, we didn’t know how it was
going to work out. James became very
sick and got a double ear infection, so I stayed back with him and with cousin
Britta who had flown out to be our helper on the trip to Montana. In the end, I flew on the day of the wedding
and met you and Daddy who had flown the day before, and then I was able to be
back late that night to be with sick baby James again. Even sending you on that trip and on an
airplane was scary for us. We know that
the air on planes can sometimes be stuffy and germy, and we really really didn’t
want you to get sick just before your surgery.
But we took the risk and prayed hard for your protection. You had also been on antibiotics for an ear
infection, but thankfully you never got as sick as James or Britta or I did.
Daddy went back to Minnesota for one more week of work, then
he was back for the week leading up to your surgery, which included both your
second heart catheterization and your fourth birthday party! These days were quite a blur. Monday, June 13th was your heart
cath. We knew what to expect from your
first one when you were only 5 months old, so we weren’t as scared. Daddy and I brought you into the cardiac
pre/post unit and got you into a little hospital gown. You got to choose a movie to start watching,
and I think that it was one with Faun and Tinkerbell. Nurses came in to check your vitals and answer
any questions we might have. Dr. Miller
was going to do this heart catheterization as well, so we chatted with him
again. The nurses were amazed that we
hadn’t been in the hospital with you since your last surgery. I think it is pretty common that kids with
special hearts get sick more often, and sometimes need to be in the hospital
while they get better. So as a result,
when we checked you in, they had all of your information, but the most updated
picture that they had for you in their computer was for a 5 month old
baby!
The nurse gave us the option to come back with you into the
operating room while you got the medicine through your mask that would make you
fall asleep. So Daddy and I put on the
special bunny suits and carried you back into the operating room. The room was very bright and a little bit
cold and there were a lot of doctors and nurses working on setting everything
up. Some of them we had met, and some we
hadn’t, and most of them had their masks on, so I think you got pretty scared. You had been happy and chipper all morning,
and then all of a sudden you started crying and clinging to me and wouldn’t let
me put you down. Poor Ada, it was a
scary moment for you, as I am sure the room looked scary, and you weren’t able
to see all the faces of people. We
needed to put an oxygen mask on you that would give you medicine, but you
started screaming and pushing away the hands of anyone who came close to
you. In the end, Daddy and I held you
while the doctors and nurses put the mask on your face. You fell asleep in less than a minute and you
stopped struggling. It was so very sad
for us because we love you so much and didn’t want you to be scared. But also, we couldn’t explain everything in a
way that you would understand – that the nurses and doctors needed you to fall
asleep so they could give you medicine that would make all the owies go away,
and so they could again look in your heart to make sure that everything was
looking good for surgery.
I started crying as the nurse led us out of the operating
room, to wait for you outside. He told
us that you wouldn’t remember any of it, as the drugs would make you forget
things. But you did remember. Many hours later, as we were driving home in
the dark and you were close to falling asleep, you asked me about the man with
the mask. You had remembered, and we
were sad that you had. But Ada, dear
girl, you are a fighter. You fought
against the strange people with all your might, and only after the fact were we
able to explain it all to you.
Thankfully you didn’t seem to be too sad or upset about it. You fell asleep and the next day you seemed
to be just fine – mostly excited for your birthday party the next day!
Your fourth birthday party was so, so fun! You had so many friends there, old and
young. We ate a lot of good food and
played games outside. There was even a
piñata to break open at the end! We all
needed a good celebration of you and of your life and of the friends and family
who had been there for us through thick and thin.
Your post op visit was on Friday of that week, and you
sailed through it like a champ. You
brought along your little stuffed buddy, George the alligator, and the Child
Life Therapist named Sarah also gave you a stuffed animal moose that you named
Chocolate. What a great name! You practiced putting the mask on your
stuffed animals and we were in and out of the hospital in a few hours.
All set to go. A
weekend together as a family. I think we
went up to Boulder that Saturday for the farmer’s market one last time. It is such a fun place to go during the
summer, and we knew that we might not get the chance again as a family! Sunday morning I called your pediatrician
about James, who had a high fever and seemed so sick, even though he was
already being treated for an ear infection.
I cried when the doctor told me that he needed to see James the next
morning in the clinic. I told him where
I was going to be the next morning, with you in surgery. It was a very, very hard time again for me as
a mommy and for Daddy as well. James was
so sick and sad and uncomfortable, and we really didn’t want you to get sick,
but what were we to do? We were all
living together, and you had had a lot of contact with James. We prayed for the dear little guy and
arranged that his aunties would meet us at the hospital in the morning and take
little James to the pediatrician while the rest of us stayed at the hospital
during your surgery.
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