On June 10th at 8:42am Nate and I were stunned to
hear the doctor say, “Congratulations, you have a DAUGHTER!”
WHAT?!?! Tears started streaming down both of our beaming
faces as we heard the dominant cry of our new baby girl. After having two boys
we just assumed there was another in our future.
A girl completes the family. Kaitlyn Emma Gawel was pink,
loud, and strong. Like her mother, the girl was ready to eat as soon as she
arrived and spent the first hours of life eating and snuggling with mom and dad.
 |
| Tiny and pink |
On June 13th at 11:45am Nate and I were stunned
to hear our pediatrician, Dr. D, say,
“The NICU transport team will be coming to take Kaitlyn to the NICU to
prepare her for transfer to the Cardiac unit at Lurie’s next door.”
Tears were once again streaming down my face only this time
it was hysterical, ugly, tears that led to near hyperventilating. The tears
would not stop as I ONCE AGAIN watched the transport team wheel away my newborn
baby to Lurie Children’s Hospital.
Seriously!!! It was happening again.
Let me back up . . .
Tuesday:
A few hours after Kaitlyn’s birth as we cuddled our baby who
was NOT in the NICU (this was first for us) we gleefully called family and
friends to announce her arrival; one of the pediatricians from Dr. D’s office
stopped by to do a newborn examination. A very strong, pink, healthy girl is
what she saw . . .but when she listened to her heart she heard something
different. Heart murmurs can be common in newborns as they transition to real
life from womb life. However, when the doctor heard not one but TWO heart
murmurs in Kaitlyn she made a note.
At first, no one was overly concerned but they wanted to
make sure everyone was aware of the discovery. Nate and I were living in
blissful denial. Yada, yada, yada they heard a few murmurs big deal. We have a
healthy little girl in our arms and everyone keeps saying she is strong.
Fingers in ears when discussing the murmurs. Don’t want to hear it!
Wednesday:
The following day, they ordered an Echo to get a better idea
of what was causing the murmurs. Nate answered the call when the doctor told
him they found a VSD, a coarctation of the aorta, and bicuspid valve. At this
point, Nate and I were still living in blissful denial as they told us they
would continue to monitor her but nothing needed to be done at this time.
The coarctation of the aorta (co-arc) was the most
concerning of the three. A co-arc is a narrowing of the aorta, the large blood
vessel that branches off the heart and delivers oxygen-rich blood to the body.
When this occurs, the heart must pump harder to force blood through the narrow
part of the aorta. Basically it’s as though her heart is exercising all the
time working hard to get the blood to the body. While it can be serious if undetected, once it is diagnosed
treatment is usually very successful.
Thursday:
Dr. D told us she would most likely need to get her
coarctation of the aorta fixed at some point. However, at this moment she is
doing very well and we will need to make an appointment for the cardiologist to
see her outpatient. Sweet, great, we’ll think about it later.
Friday:
Blissful denial is one of the greatest assets a human can
use to extend inevitable sadness. Yet, when a sledgehammer breaks that blissful
denial wall the weight of reality is crushing.
After a follow-up echo, Dr. D called and asked to be put on
speaker. Hmmmm, this is
interesting.
Dr. D: “The echo showed
the narrowing of the aorta is much smaller than originally thought. She will
need to have the co-arc repaired sooner rather than later. The NICU transport
team will be coming to take Kaitlyn to the NICU to prepare her for transfer to
the Cardiac floor at Lurie’s next door.”
Me: I looked at Nate with puppy dog eyes, put my
hands on my head, and said “WHAT, WHAT?????!!!!!”
Nate: Remaining very level headed “So will she
be having surgery today or are they looking just to monitor her for a few
days?”
Dr. D: “They will
need to monitor her when she gets over to Lurie’s but she will need surgery
with in the next few days. I just cannot believe your family is going through
this again. In my 12 years of practicing I have never had a family experience
as much as your family has in the past two years.”
Knock, knock, knock .
. . “they’re heeeerrrrreeeee.” And away my 3 day old baby girl went.
It was at that moment when it all came crashing down. Two
years of NICUs and doctors and tests and hospital stays and appointments and
nurses and medical terms and illnesses and surprise diagnosis and x-rays and
viruses and scary words and serious doctor talks and surgeries and blood labs
and breathing tubes and oxygen and a blenderized diet and development delays
and therapies and unclear outcomes and seizures and medicines and cardiac
appointments and MRIs and CT scans and much, much more . . . at that exact
moment it crushed me. I. Could. Not. Breathe!
I like to think of myself as a level headed mom that can handle
things without drama but this was the final Jenga piece removed to make it
crumble to the ground. It hurt. It physically
hurt! I remember watching a Sex in the City episode when the ladies went to the
Hamptons and Carrie ran into Big with his new 20-something wife. She ran away
only to throw up in the sand because she was in so much physical pain. Draaaaaama! I thought it was little dramatic because
how can something emotional cause such a physical response. Unfortunately, I
now know. While I did not get sick like Carrie my body shut down. My lungs felt
as though a boulder was placed on my chest and was slowly getting heavier.
Cheated, it was one of the only words I could get out of my
mouth. Cheated!!! I felt cheated. I was cheated out of Connor’s first 48 hours
of life as he was being “monitored” in the NICU. I was cheated out of JD’s
first 3½ months of life (and many more) as I could only hold him on a pillow
while he was attached to wires and monitors. And now, once again I was being
cheated out of walking out of the hospital with my baby girl. CHEATED!!!
 |
| Hooked up to monitors and wires is no fun for anyone |
Looking back on the day I can remember every feeling, every
smell, every word, every face, everything about the moments that moved so
slowed. As we crossed the bridge from Northwestern to Lurie’s to see our baby
girl I could not speak. I am surprised my legs actually worked as the
receptionist (we were not allowed to walk with the team over to Lurie’s we had
to walk on our own . . . oh and I did I mention I was 3 days post C-section)
told us “Baby Girl Gawel is in room 1514.” NOOOOOOOO, 10 months earlier we
spent 7 days in room 1512 after JD’s heart surgery how are we back here????
All eyes fell to us as we walked down the cardiac floor.
“They look so familiar” “Did I give them a tour of the floor?” “I think my
husband works with the dad” “I recognize them, I think I met them at my
friend’s party.”
No, no, no, you don’t know us socially and Nate does not
work with your husband and we have never shared cocktails at a party. You remember
our son from 10 months ago . . . Large ASD, Open Heart surgery, Wolf-Hirschhorn
Syndrome . . . YES!!!!!!!! That’s it.
Honestly, almost every nurse and doctor mentioned how they
recognized us but could not place us until they heard JD’s name. Always wanted
to be VIP on a Hollywood red carpet but VIP status on a cardiac floor at a children’s
hospital is just not the same.
All afternoon doctors and nurses came in and out of the room
to look, poke, listen, explain, and check on the newest Gawel baby. Not to toot
Kaitlyn’s horn or anything but we actually had doctors and nurses who came to
see her because they heard she was incredibly good looking. I’m not even making
that up.
Summer is a busy time for the cardiac floor so they were
struggling with finding a surgery date for Kaitlyn. We were transferred on a
Friday and would have to wait over the weekend to get a final date because “the
OR is very booked this week.” Normally, I would have taken this good news given
no one was in a rush to get her to the OR. Not a life-threatening situation.
However, 3 days post birth hormones had me raging that she was not on the top
of the cardiac team’s To-Do list.
Our fabulous cardiologist knows us very well and asked “has
anyone told you the bottom line?” Nate and I looked at each other slowly,
“nooooo . . .” “Oh, well there is a zero mortality rate with this surgery.” I
would have been less shocked if he slapped me across the face. When have you
EVER heard a doctor use the word ZERO when discussing a potential surgery?!?
However, he was making a point, this is a bump in the road but it is small and
she will continue to be a very healthy and happy girl.
Ultimately, the procedure would be rather simple . . .
especially given during out stay a teenager on the other side of the floor
received a heart transplant which took the surgeons at least 8 hours, it put
things in perspective for this angry mom.
The surgeons would not have to go into the front of the chest or stop
the heart for this surgery. In fact, they don’t’ go into the heart at all. They
are able to go in through the side reducing the scaring. It’s all child’s play
really, they go in cut out the co-arc, sew her aorta back together then close
her up. Whole process takes about 20 minutes. Side note: this is NOT how it sounded to me at the time. Rather it
sounded more like “we will slice her open play around in her heart cut pieces
of her out then sew her up and hope for the best . . .you good with that?”
Given the incision would be under her left arm I was told she
still would be able to pull off a fabulous strapless wedding dress (or as my
bestie said “rock a triangle top bikini”) without worrying about a scar. I was also
assured she would still be able to become the Olympic volleyball player I was
so close to becoming (All-Conference
Honorable Mention in high school is pretty much just one step away from the
Olympics – she has pret-ty big shoes to fill).
 |
| She actually had a few incision issues which sent us back to the hospital for 2 days but the scar is still very small |
That evening Nate stayed in the room with Kaitlyn while I
went to sleep back in my hospital room at Northwestern (the two hospitals are
connected so I was only a 5 minute walk away) because I could not be in the
room any longer.
Ugly, ugly, Claire Danes tears streamed down my face as I
crumbled to the floor when I walked back into my post delivery room. If I was
watching a movie and one of the characters sobbed uncontrollably the way I did
at that moment I would have thought the acting was frightful. I would never
believe someone to be so dramatic while alone in a room. But that is what I was
super dramatic (actually kinda embarrassed to admit it). How was I back in a
post birth hospital room WITHOUT a husband or a baby?!?!?
 |
| Another Father's Day spent in the hospital |
The next morning I was a tiny bit better but I lost it as I
walked across the bridge only to see first time 7 month preggos happily
skipping to their Great Expectations class preparing for their perfect birth
and post birth where they will actually leave the hospital with a baby. Ugh! (Slight disclaimer: most 7-month pregnant
women do not skip nor do they look overly happy but in my mind on that day they
sure were rubbing it in my face).
I’ll spare the details but the next few days were more of
the same, no word on the surgery date, more imaging needed, and lots of crying
from this mommy.
Finally, surgery was scheduled for Thursday (nearly a week
after we were transferred). Given I was nursing I could not go home but the
idea of sleeping on a recliner for weeks sounded horrible. Luckily this little organization
you may have heard of it, Ronald McDonald House, has 9 sleep rooms just two
floors down from the cardiac floor. I was given a room allowing me to sleep in
a bed for a few hours then run upstairs to feed Kaitlyn. Ironic after being on
the board at the Ronald McDonald House near Lurie Children’s for TEN years and
donating more money than I even know (given much was donated during the annual
Wine Tasting) I was now one of the families utilizing a Ronald McDonald House
room. Don’t worry this was not lost on me.
I’ll cut to the chase. Finally, on June 19th,
Nate and I sat in the same family room as we had 10 months earlier for JD’s
surgery while our 9 day old baby girl would be in the same OR with the same surgeon
hands operating on her heart. Surprisingly, by this time I was feeling much
better about the whole thing. Don’t get me wrong, I was still pretty pissed and
felt the whole situation was unfair but you just cannot go through life feeling
sorry for yourself. Laughing through
the tough times helps us get to the other side faster and stronger than
wallowing in self-sorrow. Side note: I
know that is not how I handled the first few days in the hospital but you’ve
gotta cut me some slack.
 |
| This is long and boring mom |
Over the past two years we have spent over 200 days at Lurie
Children’s Hospital with all our overnight stays and appointments. And yet,
that is nothing compared to some families. Given everything we have experienced
we still believe we are incredibly blessed. Three beautiful kids with unique
personalities that add to everyone’s life who are fortunate enough to meet
them. It was a tough first month of Kaitlyn’s life but I would not change it
for anything to have the family I have today.
 |
| Very proud big brothers |
 |
| Healthy little girl |
 |
| Life with three monsters |
 |
| Watch out boys she is a cutie |
 |
| Yes, we have ANOTHER thumb sucker |
 |
| Gotta do the super lame sticker pictures - 1 Month |
 |
| 2 Months |
 |
| Family of Five - first family block party - life does not get anybetter |
