Post-Op Day 5: Can I get some food please?

Chest tube is out! YAY! Watching the NP take the tube out was fascinating. Cut the stitch and pull. Very medical. We love no tube for two reasons: 1) The drainage in his chest has stopped and 2) Only one more wire (the central line) holding us back from snuggling. Actually, we can hold him now if we want but there are just too many things we can pull out that make us nervous. Until the central line comes out JD gets lots of head rubs, hand holding, and parents with bad backs leaning over the crib.

Last night was a rough one for the little man (and Nate given it was his night shift at the hospital). He is standing his ground hating the formula. Gagging, coughing, and spikes in temp lead to taking a step back and going back to IV fluids. Turns out he was dehydrated from lack of food and fluids and the fever. Labs came back fine with no infection, x-ray showed his lungs and insides look good, and Echo showed no fluid build up. All good things. After talking to Dr. D and Dr. Cardiology we feel the spike in temp could be very normal post op as he works on regulating his own body temp.

Dr. D, Dr. Cardiology, Dr. Cardiac Surgeon, and the NP all confessed they absolutely believed JD would still be vented (using a breathing tube) at this point in his recovery. While this feeding dilemma is a set back the doctors have not stopped grinning ear-to-ear with the great news of JD's strong breathing. He spent most of the day with his saturation levels around 97 without oxygen. From a cardiac standpoint, from a respiratory standpoint, and from an overall health standpoint JD is stellar and ready to head home. However, we need to work this feeding piece.

When we say his numbers look good this is what we are looking at: 98 = heart rate, 27 = rate of breathing, 100 = oxygen saturation level

At this point we have backed all the way up and we are starting over. Very slow continuous feeds with Pedialyte (yes I know Pedialyte is just water with chemicals which I hate but this mixture is keeping JD hydrated so we will take it). Then we move to half Pedialyte & half formula, then full formula, then slowly move back to his final volumes. It will take the next few days to ensure we can slowly ramp up but this is the best process for him.

Honestly, I was a bit frustrated and disappointed this morning at the set back but I realized this feeding issue is okay. Being on a floor with cardiac babies is very humbling. Watching doctors run down the hall as the “code” alarm is going off, walking past 5lb babies who just had open heart surgery, and seeing parents quietly have conferences with the doctors makes me realize we are so blessed with JD's "complication." When the doctors round we are their last stop because JD is the least sick. This is a good place to be. I keep telling myself everyday how wonderfully amazing JD is doing and this feeding thing can be fixed. Everyone has a picky eater, right?

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Wanted to give a shout out to JD's big brother Connor who has been handling mom and dad's absence like a champ. It might help that we took him out yesterday for the biggest ice cream cone he has ever seen. He asks about JD, he misses JD, and he wants to Facetime with JD every night. What a great big bro!

Ghirardelli Cookies & Cream

Also, a HUGE shout out to the fantastic nurses who have been crushing on JD. They have spent the last 5 days working with us to find the best balance for JD. If you have ever spent an extended time in the hospital you can appreciate the importance of the nurses. Not only are the nurses amazing on our floor but our very own Nurse Amy from the NICU stopped by to give high fives and kisses to JD. 

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The plan for tonight is to keep JD comfy and let him sleep. Continuous Pedialyte throughout the night then in the morning we will start adding formula. Prayers for a smooth transition. Until tomorrow . . .

Potty training is going well we got our Buzz shirt . . . as for the rest of the outfit it is unexplainable

Our Magnificent view from JD's room. Nate does not want me to take "fresh air" breaks knowing what it means for our wallet

JD's Secret Service

Post-Op Day 3: Foreshadowing

Remember back to English class when you learned about foreshadowing and how it will affect the rest of the story? For some foreshadowing has always been one of my favorite pieces of story structure. In college I wrote a paper on the numerous, unnoticed foreshadowing events in the movie Back to the Future (it was a riveting A+ piece of work). Yet, sometimes foreshadowing is so blatant it does not advance the storyline but rather tells the end too soon.

If anybody were videotaping JD’s pre-op on Thursday with the nurse practitioner (NP) then they would have seen blatant foreshadowing at it’s best.

During the pre-op, the nurse practitioner has the daunting task of pointing out all the small percentages possible risks for surgery. Very similar to how we handled those conversations while JD in the NICU I politely put my fingers in my ears and hummed to myself until she moved on. We are not being naive but rather keeping our brains clean of unnecessary worry. In the medically complex world that is JD there are a lot of “small chance” percentages in everyday life. If we listened to each potential challenge we would spend more time focused on possible negatives rather than enjoying the actual positives.

So as the NP was explaining the 1% chance of this or 10% chance of that I barely listened. Yet, one risk stuck out, one risk grabbed my attention, and one risk made me ask questions.

“During surgery there is a chance the thoracic duct could get nicked or stressed in which case he would have Chylous effusions where the fat drains into the chest. If this occurs he would have to be on a specialized, low fat/fat-free formula diet until the body heals itself. Another risk . . . “ NP said so matter-of-factly.

“Whoa, whoa wait, can we go back and talk more about that duct nicking thing?” I said with a bit of an edge.

NP: “Oh, of course. We do not see it very often but it is possible during surgery. It should not affect recovery but it is a risk we need to tell you about.

Me: “How often do you see the fat sacs nicked?” (I could not get over this idea of nicked fat sacs)

NP: “Welllllll . . . (big pause) we see it but not all the time. Without any data or support to backup my facts I would say about 5 -10% of the time.”

Me: “Oh, I thought you were going to say about 50% of the time.”

NP: “No, not that often. It really is very minor.”

“Yep, pretty sure that will happen to JD” (I thought quietly in my head).

Anytime we are given a “small chance” percentage we are slightly heighten in worry. Having a child with a less than 1% syndrome pretty much throws out all other percentages.  Recently, I was talking to another mom who’s currently pregnant with #2 and whose first baby had a few “small chance” percentages complexities. We both agreed that we chuckle when doctors tell us “well it is a less x% chance of happening.” Guess what we have already encountered those “small chance” percentage so this gives us no comfort. I actually think I would have felt better had she said 50% of the time.

If you have not figured out where I am going with this I am a terrible at foreshadowing. Last night around 8pm the night nurse noticed his chest tube drainage appeared white and milky. When we told the nurse we had started his food about 12 hours prior she said “yep, we need to send this to the lab.” Blast! I knew it! Lab confirmed a heighten amount of triglycerides meaning yes that “small chance” percentage has taken over again.

This afternoon we slowly started JD on his detox cleanse – it’s not really a detox cleanse but cleanses are super hip right now and it just sounds cooler than specialized low-fat formula. As of this evening he is not a fan of this formula, we have yet to get through a half his normal feed without spitting up. Poor little man.

After pumping an extra full two weeks of milk and blending an extra full week of his smoothie for post surgery it will all stay in the freezer for now.  For the next 6 week his diet will be a specialized formula to allow the body to heal itself. This will include at least 4 additional appointments after the 6 weeks on top of the other cardiac follow-ups.  Good grief!

Per usual, this did not sit well at first but then realized of all the challenges we could/can encounter this is rather minor. The disappointing part is he will have to keep his chest tube in for a few more days until it has completely drained and it will extend our stay. We were looking to be home by Wednesday (which was already a week earlier than we planned) but we will keep him here until he is 100% ready to dominate the real world . . . then we might as to stay one more day just in case J

As for the rest of our checklist:

*            Working on feeds with this new formula (not liking his celebrity cleanse)

*            IV is out of his head

*            Hoping to take the central line out of tomorrow

*            BIG NEWS: dressing is off his incision and we have seen the first glance of his badass zipper scar.

*            During the day we are testing no nasal cannula and he loved. With no oxygen help his saturation level was holding steady 96-100!!!

Overall, another stellar day for J-Doug. He is active, moving around, rolling around, kicking his legs, punching his arms, and enjoying being almost tube free. Once we get this cleanse under control he will be a whole new man. Looking forward to snuggling with him once his chest tube comes out in the next few days. Only 3 days post open heart surgery and this kid amazingly handsome!

JD's crib is the place to be. Socks the Sock Monkey (from his godmother Lauren), Bravely the Lion (from the Rutlins) and DJ the Owl really spice up the party.

Chicks dig zipper scars and head band-aids

Agh, we just cannot get over how great he looks. Feeling on top of the world. Good as new.

Seriously, it's pretty awesome looking

"So we put our hands up like the ceiling can't hold us . . ."

DJ the Guardian Angel Owl

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 3^rd 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

 

Short details:

·      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!

The Gawel Superhero Justice League: One Year Later

Side note: A few people have asked if they can forward our blog to friends, family, or post it on Facebook. The answer is always yes. When we first received JD’s diagnosis it was through other families’ blogs we found comfort exploring the life of WHS. From one blog to the next they all had different stories and each story helped us as we moved into the next stage of understanding.

When we decided to write a blog we discussed making it public or private, only for close friends and family. However, if not for other families opening their hearts with each post we might not have found the reassurance we were looking for in those first few weeks. To pay it forward we have happily shared our blog with anyone who wants to read more about a brave little man, his rascally big brother, and two average parents. Even if it only brightens one person’s day or helps one parent let out a big sigh of relief then we feel we have paid it forward.  And to the rest of you, at least you get to see some pictures of two very handsome little men.

Please feel free to pass it along as we love telling JD’s story.

Quick recap for the new readers. Read the { } as our summed up thoughts along the way:

At our 20-week ultrasound with our second son the doctor found a few anomalies {what?!?} sending us to a Level II ultrasound {scary}. During the Level II ultrasound they found more anomalies including a hole in the spine, which could mean Spina Bifida {okay, super scary}. After an amniocentesis at 21 weeks we received the news we were having a baby boy {YAY} with a very, very rare genetic syndrome called Wolf-Hirschhorn Syndrome {is this real life?}.

JD was born at 35½ weeks at 3½lbsish {the doctors literally put an –ish on his weight} and was immediately transported to Children’s Memorial in Lincoln Park {sad mommy stayed at the hospital alone}. 48 hours later doctors told us the hole in the spine was only a dimple therefore no Spina bidifa {rejoice – yay}. Over the next 3½ months JD spent his time growing, feeding, and getting stronger. Finally, on July 24^th he left the NICU to join our family at home.

Over the past year we have had anywhere from 2 – 10 appointments each week with over 17 different specialists, doctors, and therapists. Each day JD gets stronger and healthier proving life takes us down new paths that might start out scary but end brighter than we ever imagined.

Helpful posts to get the whole story:

From the Beginning

James Douglas Gawel is Here

Wolf-Hirschhorn Syndrome: One Year Later

Profile of a Handsome Boy - Part 1

Profile of a Handsome Boy - Part 2

Profile of a Handsome Boy - Part 3

Profile of a Handsome Boy - Part 4

 

On to the main post . . .

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On July 24, 2012, one year ago today, James Douglas left Lurie’s NICU for the second and final time. When he was born on April 2, 2012 he was 3lbs, 8oz. When we left on July 24, 2012 he was 9lb 0.6oz. And on July 24, 2013 he is nearly 19½ lbs.

We are not surprised. We are not amazed. We had faith with all our hearts that he would be extraordinary in his life. By 15 months he is rolling from side to side, sometimes he rolls to the belly and sometimes he rolls on the back. Working on shoulder strength, neck strength, and eating orally are the short-term goals. Long-term goals for the year are very aggressive . . .by Christmas we would love to see him sit up on his own –yikes! Even babies and stay at home moms have PMPs (I cannot for the life of me remember what PMP stands for but they were the fancy name for our work goals).

July 2012

July 2013

With JD’s surgery coming up we have had some wonderful experiences and lots of family time. This past weekend we had a family photo shoot (if you know you me then you know I LOVE a good photo shoot – even though I am the least photogenic person you will ever meet . . .not everyone can be Barney Stinson or Joanna Rutlin). But this photo shoot had a theme – superheroes . . .

One warm spring afternoon in April I received a package from a Seattle address. As I walked up the stairs opening this mysterious package I pondered who sent us something. When the package was open tears started streaming down my face. In my hand were two bright blue superhero capes. One with a C and one, just a bit smaller ,with a J . . . both with yellow lighting bolts striking through the letters. It was at that moment my boys officially became Tiny Superheroes.

A few months back I had noticed a post about this remarkable woman who started off by making a superhero cape for her son and nephew and ended up creating her own Justice League. Robyn Rosenberger, founder of Tiny Superheroes, sews superhero capes for children who fight harder everyday than the rest of us. Through her website you can nominate a Tiny Superhero to receive a cape so everyone knows what a true superhero looks like.

Who nominated JD and Connor? One of my oldest, dearest friends, Dawn, whom I have known since 7^th grade {yikes} saw the same post and thought immediately about JD. Knowing JD had his upcoming heart surgery Dawn wanted to give JD a little gift to show him we all know he is a superhero. However, it did not stop there. Dawn also knows what an amazing big brother Connor is to JD (and will forever be); she felt he deserved to be recognized as a superhero as well.

At the same time, completely separately, another friend, Andi, had recently started her own photography business. In doing so she finds ways to donate her time to some special causes. Once she heard about Robyn and her Tiny Superheroes, Andi reached out to let Robyn know she would happily do a family photo session if any suoerheroes were nominated in the Chicagoland area. When Andi found out it was the Gawel family, she was pumped. Andi is a member of Team JD and has been following him from the beginning making this an “honor” (her words) to photograph the family.

This past weekend we had our superhero family photo shoot. Less than a week before JD’s surgery we ran around Lincoln Park Zoo as a family watching as the capes waved in the wind.

I love this little guy ever so much!!!!!

Protecting his brother everyday

Gawel family favorite spot in all of Chicago

Tiny Superheroes with big hearts

Love this family shot!!!

Moving out of the city very soon but we will miss this gorgeous city

Brothers talking about life

Handsome boys

Pondering life . . . or his Fantasy Football Team

Superheroes take breaks too

My all time favorite picture of our Superheroes - tears every single time I see it

As I have sat, staring at my computer over the past few weeks trying to form the words to write the final post before surgery I kept coming back to the blue capes. Initial research on Wolf-Hirschhorn had us thinking JD would be in surgery numerous times over his first few years. It also told us we would be crying a lot as our baby struggled through life. Yet, those statements are not true.

JD had one very minor surgery at 3 months for his G-Tube placement – 45 minutes done and done. That’s it. No more. Most of JD’s challenges have improved or gone away completely. His kidneys look great, his eye sight has greatly improved, he breathes better than they ever imagined, he weighs way more than expected, he eats like a champ, and most of all his heart is strong. Of all heart issues you can have, ASD surgery is the most minor. A friend’s son had a 7 hour open heart surgery, JD’s surgery all in (prep, set-up, anesthesia, heart, etc) should be completed in 4 hours.

James Douglas has enjoyed every day of his life. Connor has loved helping his brother get stronger everyday. Nate and I have found our dream family with two adorable little boys who will grow up into strong men (and mostly like become besties with Prince George of Cambridge).

There is so much to say before JD’s surgery and yet not enough words. Thank you to EVERYONE who follows JD and Connor’s stories. Thank you to EVERYONE who emails, texts, calls, sends telegrams on a daily basis. We smile everyday knowing there is a world out there that loves our boys. Connor has never been so popular given how many people offer to hang out with him.

I cannot say it enough. Thank you for loving JD and learning about his world. It seems foolish now how worried we were that people would not accept him in their lives. In fact, I think JD makes us more popular. People like us more because of JD.

And a very special thanks to the following people:

Thank you to Dawn for thinking of our little guys and honoring them with such an extraordinary gift.

Thank you to Robyn and her Tiny Superheroes team for giving JD the cape that matches his super powers.  Even if you do not know someone who needs a superhero cape you can still donate or sponsor some little munchkin who deserves to join the Justice League.

Thank you to Andi for taking time away from your beautiful family on a gorgeous Saturday morning to spend time with the Gawels. As we go into lockdown for recovery during the month of August we can look back at those pictures again and again to relive our joyful Saturday morning.  Check out more of Andi’s work http://alwaysadorable.zenfolio.com/

Nate and I will do our best updating Team JD throughout the day on Friday, July 26. However, if we go for a few hours without an update please do not think something is wrong. There is a chance we are trying to keep ourselves busy by watching old TV shows on Netflix. 

One more quick shout out . . .our family photographer, Jordann Tomasek took a few shots of the boys before we left our condo in May leaving us with such great memories.

 Hugs and Love

-The Gawels