On this day, 2 years ago, Jay and I entered Children’s
Hospital full of excitement for the very first time. Of course we also felt
fear, sadness and anxiety. But mostly excitement…I think. We were taking our
baby home for the very first time. It had been 8 long, emotional and exhausting
months. Those 8 months were originally only supposed to be a few days. We were
never prepared to stay for 8 months. I don’t know if we were ever really
prepared for any of this new life. But we quickly learned and adjusted. I only
have one child (and she’s trying so hard to keep it that
way) so I don’t know what it’s like to take a new baby home but my sister had a
baby a few years before me so I can kind of compare it to my niece’s homecoming
and Molly’s was nothing like that. Everyone could visit my niece and hold her
and pass her around. We didn’t allow anyone in our house that wasn’t our
parents or a nurse. We picked out her home coming outfit but by the time she
actually got to come home it didn’t fit. And by the time she did get to come
home her outfit was the last thing on my mind.
Usually when preparing to take your baby home they show you how to clean
your baby, feed your baby and change your baby. Set you up with a few diapers
and maybe a can of formula and send you on your way. Again, that was not the
case for us. We started preparing months before. We had to learn how to change
out a trach, change the trach dressing, learn how to perform CPR on a trached
baby, give 20 plus medications, make sure we could prime her feeding bag and
put it on the feeding pump, follow a schedule to wean her from her sedation
meds, follow a schedule to wean her from the ventilator, work the ventilator
and O2 concentrator. The list goes on and on. Even with all of these
responsibilities we were thrilled to do it all just so we could take her home
where she belongs.
The day came so fast and we were so excited but scared,
petrified even. This was the only life we had known for 8 months. The cardiac
ICU staff became like family to us. The nurses replaced some of the friends we
had lost. We loved them so much. After all they were the ones that got to make
her better, calm her down when she was sad, spent more time with her than we
did, taught us all we needed to know and helped us to find the confidence to
take care of her the way she needed. They were no longer going to be a part of
our everyday life. We didn’t know what we were going to do without them. The
day that Molly was getting discharged we walked in to her room full of
balloons. There were pink and white balloons everywhere. I had made a huge sign
in the days leading up to her discharge that was hung on the front her of room.
Everyone was so happy that we were finally getting out. Wait…were they happy
for us or happy they wouldn’t see us anymore? J
Either way we were leaving. One of our favorite nurses was on the day we were
getting discharged. Ravi, the doctor who did everything for us and for Molly
was also there to see us off. It was such an emotional day. I tried to choke
back the tears as we said good bye but I couldn’t do it. I wanted to take both
of them home with us. Who were we going to ask our questions to? We couldn’t
just call ORL to come up or call for a chest x-ray or echo if we thought she
needed it. We were completely, 100% on our own. Ravi & Jen walked us down
to the car. We hugged them both and said our goodbyes.
This is the moment Molly’s life truly began. She was loaded
in and we were on our way. I think it was the longest car ride I had ever
taken. We finally arrived at home and Molly was warm, probably from being in
the car seat for so long. We took her clothes off and cooled her down. Before
we knew it we received a call from Jen checking on us. It was so good to hear
from her. We were so nervous. That night I slept on the floor in Molly’s room.
She required meds every 2 hours. I felt like I didn’t sleep a wink. My parents
had brought over an air mattress the next night so I got to sleep on that. Our
night nurse didn’t start right away because we wanted a chance to just be a
family at home without any medical staff. As time went on things got easier. We
settled into a routine pretty quick. We drew up the meds and did all of the
trach care. I ended up leaving my job but quickly found a part time job that
allowed me to work from home. We limited the visitors and trips out. As we
became more comfortable with Molly’s cares we started to venture out. We didn’t
go anywhere where there would be a lot of people. No one’s house (germs), no
kids places (germs), no restaurants (germs), well, you get the picture. We
disinfected (and still do) everything.
Our trips to Children’s became further and further apart.
Days turned into months and now here we are. Two years later! Two years later
and she is home and doing so amazing! She is so close to walking. She loves
music and TV. She loves to color and paint. She loves to go shopping (thank
goodness). She loves to be clean and doesn’t like mess (thank goodness). She
doesn’t like to sleep and doesn’t like
to be messed with. We don’t know what the future holds for her medically because
she does still have some regurgitation on her mitral valve which will most
likely require another open heart surgery at some point in her life and her
intestines are still malrotated but we no longer let these issues consume our
every thought. We allow ourselves to make plans for the future and we have so
much hope for her. She deserves the best and we try every day to make it a good
one for her. We spend the majority of our time protecting her from germs and we
are starting to meet with the school system about preschool. I can’t believe we
are already talking about preschool. She is growing up so fast and I can’t wait
to see what the future holds for her. We celebrate every milestone as if she
were the only one to ever do it. We want her to feel special all the time
because she has been through so much and we want her to always know that she is
loved and wanted and she didn’t go through everything she did for nothing. We
couldn’t be happier to be her parents and we are so happy that we were the two
that were picked.
On our way home!!
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