Jessica Simpson was known for her love of Louis Vuitton purses. Ellen DeGeneres is known for her sign-off “Be kind to one another” (makes me smile every time). And JD’s NICU buddy Jackson was known for his owls.
Before he was born, Jackson’s nursery was fabulously decorated full of owls with a modern twist. While Jackson only spent 48 hours in his room owls became his calling card. Continuing to honor Jackson, his parents have used the owl as the symbol of the Jackson Chance Foundation.
From the moment we met Jackson the Gawels have felt a very special connection when we see owls. An owl hangs on JD’s IV pole (used for his tube feeds). At Christmas we added an owl ornament to our family tree. And, we felt it was a sign when we found a house we loved with an owl statue on the front porch (we did not get the house due to a shady listing agent but it pointed us the suburb we fell in love with). Every owl that comes across our path makes us smile.
On July 26, 2013 as Dr. Cardiac Surgeon masterfully glides his hands over JD’s heart, Nate and I sat in the family waiting room trying desperately to pass the time. Nurses and doctors came in every 45 minutes to give us updates but it was a quiet, little lady who gave us the emotional hug we needed.
It was a simple canvas bag with red straps but it was full of comfort. The bag was from an organization called Mended Little Hearts which provides support for families impacted by congenital heart defects (congenital heart defects are defects of the heart which are present at birth). Coloring books, children books, blankets, care packs, and water bottles filled the bag but it was the stuffed owl that grabbed my attention.
The morning had gone pretty well as I had gotten most of my tears out yesterday during our pre-ops (sitting in the x-ray waiting room crying when the kid next to you with the broken finger looks at you with judging eyes makes for a stellar morning). Few tears here and there this morning but I felt he would be okay so I was not worried. However, when I opened the bag and saw the owl’s eyes staring up at me it was at that moment when I lost it. It was the first official sign everything would be okay. Jackson had sent JD his owl to watch over him as he went through surgery.
|Thank you Jackson|
I believe in angels. I believe those that are truly special to us who are no longer on earth still play a part in our lives. The year leading up to JD’s birth was a tough one on the family. My cousin lost her 5-month-old son, Benjamin (Ben-G), in December 2011 due to a congenital heart defect (another 1 in 100,000 spontaneous incident). 5 days later we had our 20-week ultrasound telling us something challenging was going on with JD. January 3, 2012 we received JD’s diagnosis. January 10, 2012 my grandmother, my last living grandparent, passed away at 93 years old. April 2, 2012 JD was born 4½ weeks early and started his NICU stay. 9 days later my cousin Mike passed away at 41 years old after a long illness. This all took place on my mom’s side of the family. It was a tough year but through it all the family and JD continued to get stronger and healthier and full of life. I believe those that passed before him starting watching over him before he was even born.
Today when I opened the bag to find an owl I knew once again JD’s guardian angels were watching over him with Jackson as the leader. We named him DJ the Owl (JD backwards . . . don’t worry it took me a second too when Nate announced it. “What does DJ stand for?” Let me tell ya I am quick on my feet). My eyes drifted to the stroller as I lifted DJ out of the bag. JD’s blue superhero cape attached to the handle called to me. The cape was immediately placed around DJ’s neck fitting perfectly as though it was a custom fit.
DJ sat with me under my arm for the remainder of our time in the waiting room. The owl received the place of honor at the foot of JD’s bed with the cape remaining firmly around his neck. Jackson’s owl will keep the cape warm as he watches over JD each day he is in the hospital. Once the tubes are gone JD gets his cape back knowing it was taken good care.
Today we are thankful to all our angels watching over us especially the youngest angels Jackson and Ben-G. The young ones always have the biggest wings.
As for the rest of the day, it went very well. Watching your child being wheeled away is the hardest part . . . although watching the Today show on a Friday in the summer is pretty brutal as well. Scary Spice was the guest host for the 3rd hour and she showed up late. Live TV and she walked in 11 minutes late while Al and Natalie filled time. BRU-TAL!
|JD's Superhero cape riding shotgun on the stroller|
|Every superhero has to have their cape within reach at all times|
|Hmmm, not sure I like what's going on here|
|Family selfie . . . JD's not impressed|
|Daddy rarely gets the pics with JD and I love this one|
· The breathing tube went in easy peazy.
· JD does not give up his veins very well so they had a hard time getting his IV and central lines in. Looking closely at his hands and feet and neck you will find lots of tiny little sticks where they tried with no success (or a vampire had a yummy meal). Finally they had to perform a “cut down” where they cut a tiny section open (this was in the ankle) to see exactly where the artery is located. Success!!
· He now has an arterial line in his ankle, a central line in his groin, and an IV in his head. Yep, in his head. Hilarious. Every time they take blood the phlebotomists (the techs who draw blood) always say “too bad we can’t take it from his head because he has great veins up there.” Looks like they finally got their wish.
· Once on the heart/lung bypass machine (yikes) it was smooth sailing. First thing every doctor says as he enters the room “it was a large ASD. A very large ASD. But is now completely closed and the heart looks great.” YAY!
· Post surgery echos and tests showed:
o Great pressure levels
o The heart quickly started to shrink (with the extra blood shunting through the heart it created a larger right chamber with the extra pressure) which pleased the doctors as it got smaller
o No residual shunting through the atrial septum . . .meaning the hole closed completely – they use a small part of the pericardium sack surrounding the heart to close the hole. They sew it in over the hole then the body grows new cells around it securing it in. Kinda cool huh. It’s like Science Fiction stuff only it’s real life
o High fives all around, the procedure went very well. All the doctors said this will make him even stronger during the winter cold season
o Currently, he is comfortably sedated with the breathing tube and chest tubes (used to drain the excess fluid) still in. The goal is to wean him from the breathing tube tomorrow. Take the chest tubes out by Sunday and hopefully slowly start feeds by tomorrow. I pumped two extra weeks worth of milk to freeze for post surgery to ease him back into his feeds.
That’s about it. Seems pretty anti-climatic which is how we want it. JD’s crib is decorated with pictures of Connor, Mom & Dad, his godparents, and David DeJesus. Hoping Lord Stanly makes another trip to the hospital now that he is back in Chicago for the convention. Gawel Family Cup watch is still on the list all the way until the new season starts up!
|MTV Cribs CCU Style|
Nate and I had planned to camp out here over the weekend. But, these rooms are set up like NICU rooms, no pull out bed, no private bathroom, and no TV. Plus, they have a strict one parent can sleep bedside rule even though both parents can be here 24/7. Strange. Soooooooo, tonight Nate and I sleeping in shifts. One gets the comfy chair while one gets the rocker. Long night but totally worth staying with the munchkin.
Appreciation, gratitude, thanks, and glee are just a few of the words to describe how amazing Team JD has been over the past few days. The prayers worked, the hilarious distraction topics you sent worked, and the loving support worked to keep us wrapped in a hug all day long.
Sweet dreams and good-night!