Friday, September 5, 2014

Our Kids Have Heart

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 . . .

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!

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.

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.

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