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

Monday, February 17, 2014

Adding the ‘L’ in Gawel

Surprise (not really) the Gawels are expecting Baby #3, aka 3G, in June. Most girls, like myself, can sense when there is a newly pregnant friend in the universe and had already picked up on the growing belly in a few Facebook pictures. Makes sense given I was showing at 9 weeks. Fun fact: my mom noticed my belly getting bigger before we announced I was pregnant – yep 3G was not waiting make his/herself known.

Of course having a third child brings out questions people want to ask you but never actually do. They probably talk about it with others but not directly to you J I figured I would answer some of those questions to help facilitate the conversation. Plus, let’s me honest . . . after JD there are usually a few additional questions.

Planned or surprise?
Interesting question. Nate and I had decided on having a third child . . .however, 3G decided (s)he wanted to join the family a bit earlier than we planned. It seems as though my children do not follow my very scheduled and organized life. Connor was two weeks late, JD was 4.5 weeks early, and now 3G will arrive in the spring versus later in the year per our plans. Guess we know who will run the show come June.

Will we find out the gender?
This causes some controversy amongst our besties. No, we will not find out the gender, we will be surprised in the delivery room like we were with Connor and we would have been with JD had we not learned about his entire genetic make-up.  I love hearing what others are having before the babies are born but for me I love a good surprise. And we will not share names either . . . although the Olympics sure do give us some more options to think about. 

What are we hoping for? Boy or Girl?
It would be nice to add a princess to the family. Nate, Connor, and I all think it is a girl. When we asked Connor if he wanted a baby brother or a baby sister he said with a shrug of his shoulders “I already have a brother so now I need a sister.” He calls her Pinkberry and has already picked out paint colors for her room and bathroom. Hope he realizes he will have the pleasure of sharing that bathroom with her and JD for many, many, many years to come. I am sure there will never be fights over time spent in the bathroom.

All that said, we would also be happy with a new little prince. Remaining the only princess in the family has its perks for me.

At this point, we feel it is a girl and she will be a pistol. This pregnancy has given me the gifts of nausea for 18+ weeks, high school boy worthy acne, and more colds and headaches than the first 30-some-odd years of my life. The wonderful glow I once had as a first time pregnant mommy has not been seen in years. Wah wah

Don’t get me wrong; I am one of those chicks that loves being pregnant. I love the first signs of the belly even though I just look fat. I love the first movements knowing there is a little person dancing around. And I LOVE hearing the heartbeat at each of our doctor’s visits. Yet . . . I am not quite as bouncy this time around. Am I old or is it just what happens when you are on kid number 3?!?!

Will you be getting a Mini-van?
No! Next question please.

Now, for the big question that some people ask directly but most ask me with their eyes . . .

Are you nervous about having a “healthy” baby after .  . . you know, JD?
Very easy . . . NO! No we are not nervous. No we are not concerned about having a “healthy” baby.

Within the special needs community there are many different takes on the “as long as the baby is healthy” saying. Some families find it offensive. They hear “as long as my baby is not like yours.” My heart tells me people are not trying to be cruel  . . . but in reality most people do not wish for a child with special needs.  A year before we received JD’s diagnosis a group of friends sat around having lunch discussing life. During this discussion it became clear that half the group would do anything NOT to have a child with special needs. I did not agree with this mindset but I also was not raising my hand to volunteer. That conversation stuck with me as I hit send on JD’s introduction email in January 2012. But two year later we feel  blessed to have such a sweet, playful boy as a part of our family.

Once you have a child with special needs it seems people think you are kinda broken even though JD was a de novo (spontaneous) deletion. It could happen to anyone. Fun fact: identical twins are also a spontaneous event with just a different outcome. Reproduction is very unpredictable for everyone. A lot of things have to go right to have a “healthy” baby. So when people ask us about a “healthy” baby I know what they are really asking.

Yet for us “as long as the baby is healthy” has nothing to do with special needs. For us our goal is to have a child that does not end up in the NICU. Connor was escorted to the NICU for 48 hours of observation due to a fever I spiked during labor (a hospital policy which changed shortly after his birth). I was wheeled down to the NICU every 3 hours to feed Connor. It was brutal. And we know about JD’s extended stay at Children’s/Lurie’s. To us, the saying “as long as the baby is healthy” means “as long as we don’t have to visit the NICU.”

From the beginning of my pregnancy with JD I sensed something was different. From the beginning of this pregnancy I have sensed a “healthy” baby that will…um let’s say be strong willed. No matter what we are excited to expand the Gawel family.

Are you considered a high-risk pregnancy?
No. Once again, JD was a spontaneous deletion. Both Nate and I were genetically tested when I was still pregnant with JD. The results showed no abnormalities or balanced translocations. That being said, all future pregnancies post JD will be considered on track until proven otherwise.  And by all future pregnancies I mean this one because 3 kiddos is our limit.

How was the 20-week ultrasound?
Uneventful . . . which is what you want when you have had a previous eventful 20-week ultrasound. 3G is measuring exactly to the day with all other measurements looking wonderful. As the ultrasound tech measured each checkpoint she would say “looks good” or “measuring normal” but when she got to the femur she said “looks good . . . oh the femur is long the baby will be tall.” Welcome to having a Gawel baby. Connor (3 years old) is taller than many 4 –year-olds, JD is longer than most of his peer group and our 16-year-old nephew is 6’6” . . . and still growing. Olympic volleyball player maybe? Already working on my pushy mom skills.

Just to make sure the baby stays in control (s)he showed us his/her stubborn side. When trying to get pictures of the heart and profile (s)he would not show the goods. The heart scan is a very important part of the 20-week for all babies but with our history they wanted to be extra careful. Due to this snag we had the pleasure of returning two days later for a Level II ultrasound of the heart.

If you remember the Level II ultrasound is not performed at our doctor’s office but at offsite location with a “specialized” doctor reading the tech’s report. This “specialized” doctor is the same person who walked into the room after JD’s Level II ultrasound and said, “I guess I am the barer of bad news.” And continued to shrug his shoulders when I asked questions (check out the amazingly heartless conversation here). Needless to say Nate and I were pumped to meet up with this man again.

Long story short .  . .  everything looks great. Heart is pumping strong with a high heart rate in the 160s with a cute little nose in the profile pictures. 

Cute button nose

However, the excitement continued when Dr. Great Bedside Manner came in to talk to us.

Doctor (as soon as he walks into the room): “Last time baby had problems, this time baby has no problems.”
Nate and I look at each other and smile
Doctor: “How old is the baby now? How is the baby doing . . . you know (then he waves his hand over his head) mentally.”
Me: “Ummm, he 22-months and he is doing really well and growing stronger everyday and continuing to develop.
Doctor: -------Crickets
Me: Okay, thanks. All is good.

As soon as the doctor left Nate and I burst into laughter. Who asks a question like that? Not “how is he developing cognitively or socially” nope he waves his hand over his head and asks how he is doing “mentally”?!?!? Nate and I are pretty laid back people and do not offend easily which is why we could not control our laughter . . . however, most other people would have been very upset with this conversation and rightly so.

Whatever. Nate and I are very pleased with JD’s new milestones and his development so silly questions from rude people don’t bother us. It just adds a new joke to our super hilarious conversations.

Growing up as an only child I have always wanted a large family. While having 3 kids under the age of 4-years-old sounds insane (and probably is insane) all I can see is the future. Big events with tables that barely fit our family, a fireplace filled with Christmas stockings, vacations with pictures full of smiles, family sporting events with the largest cheering section coming from the Gawels, and three siblings who work together, play together, and support each other throughout all of life’s adventures.  The Gawel Adventure List continues to grow with exciting and new quests in our future.

Friday, January 3, 2014

Wolf Hirschhorn Syndrome: Two Years Later

Late in the summer of 2008 I was enjoying life as a newlywed with very little responsibility. Funny how the months following your wedding are similar to the months following graduation from college -- pressure of planning has been lifted, cocktailing often, and no immediate expectations from anyone.

During that time I had the pleasure of attending my company’s management off-site (super fun) which included team-building, lots of sharing, and an “expert” motivational speaker telling us we should “strive to do what we truly want to do in life.” Let me tell ya, in a dark ballroom in the basement of The American Club in Kohler, WI no one was doing what he or she truly wanted to do in life.

However, we all played along and participated in the activity Mr. Expert explained would “help us become better managers and media experts and humans  . . . or something like that. While I mock, I can still clearly remember one super lame activity five years later.

Mr. Expert had everyone write his or her life story in 7 words. “Where do you want to go? What do you want to be? What do you expect of your future?” Yep, everyone groaned and whined about how that was impossible and silly and what does this have to do with media? But we took a few minutes and came up with our seven-word life story.

Next, Mr. Expert asked a few of us to share with the group. Here are a few:

“I should have been a writer instead”
“This job needs to pay more money”
“Three years I won’t be in media”

Sensing a theme here?

Finally, my former manager and friend, Rebecca, who was sitting across the room, raised her hand to offer her seven-word life story:

“Exactly where I thought I would be”

“What?!?!” I shouted. “No way, those are my exact words as well.”

Mr. Expert glared at me and said, “Let me see your paper. Never in all my years have I ever seen two exact same seven-word life story.”

He was actually mad but we thought it was perfect. Rebecca and I are . . let’s just say very detail-orientated (I am sure some of the team that worked for us might have some other words). We worked well together, had the same work ethic, and both LOVED the movie Girls Just Want to Have Fun.  

Post off-site, Rebecca and I joked about our seven-word life story often. I came back to those words frequently (maybe off-site, team building exercises are not totally worthless). I truly was exactly where I thought I would be -- happily married to my best friend, taking advantage of the fabulous city, working at my dream company from college, and enjoying life. Don’t get me wrong everyday was not roses, but for the most part life made me smile.

Fast-forward to December 20, 2011 . . . my 32nd birthday and the night before our amniocentesis. Facebook overflowed with birthday wishes from friendly faces who had no idea we were not smiling. Each one was sweet and heartfelt but it was Rebecca’s that stuck “Happy Bday Jen! I hope you still feel your 7 words are true.”

I cried as I read the line over and over and over. I so badly wanted to say “No, I’m lost. I never thought I’d be here anticipating an amnio during my birthday dinner. This is not where I wanted to be. This was not my vision from the summer of 2008.” I spent much of the holidays crying wondering if I would ever find my way back.

By January 3, 2012, after hanging up the phone with the geneticist, I no longer had words for my seven-word life story. Nothing. It was blank.

I never imagined I would spend 5 hours a week watching therapists teach my son to sit, to hold his head up, and to play with toys. I never imagined I would spend 3 hours a week shopping for, making, and cleaning up blenderized food to feed through a tube that goes into my son’s stomach. I never imagined I would know the words Wolf or Hirschhorn. I never imagined I would spend close to 200 days (if you add up all the hours with over-night stays and doctor’s visits) in a children’s hospital in the first two years of my son’s life. I never imagined shooting up in the middle of the night hoping and praying my son would take a breath after a rough coughing fit. I never imagined wondering if my son will ever see 2 . . .5 . . . 10 birthday candles on a cake.

And yet . . .

I never imagined the joy of watching our 21-month old son roll over after 5 minutes of trying very hard. I never imagined I would tear up as my 3-year old holds his brother’s hand teaching him how to push his favorite John Deere tracker. I never imagined friends from long ago reaching out to learn more about our son. I never imagined getting long, strong hugs from close friends and strangers after meeting my son. I never imagined having a whole new group of friends who have little buddies similar to our son. I never imagined how much love and strength a chromosome deletion could bring to a marriage and family.

Today, on January 3, 2014, two years after hearing “We got your results back and we found a chromosome abnormality. There is a small deletion on the short arm of chromosome 4. This has been classified as a very, very rare syndrome known as Wolf-Hirschhorn Syndrome” I have my words back.

“Kinda where I thought I would be”
“Exactly where I should be right now”

My seven-word life story has slightly shifted but I’m still the happy newlywed from 5½ years ago and I sure have far more love and smiles in my life than I ever imagined.

Cookie decorating Day
Cookie Decorating Day

Waiting for Santa
Holiday Sing-a-Long at School

Matching PJs are the best

Brothers in bowties on Christmas Eve

Connor asked for a harmonica and bongos - JD asked for a rocking horse . . . Santa delivered

Christmas Morning besties

Our gift!