Heart Month 2023

For hearth month this year I’m going to try to take a little bit of a different approach. In the past I have done the heart month challenge on Instagram from Conquering CHD, but wanted something that would be different than doing those over again. So I found a different heart month challenge on IG (@cortney.given) with different prompts and decided I could do an IG post that was short and sweet and maybe expound on things here on the blog - therapeutic writing ;)

So the first prompt is a favorite memory from the hospital. 

One of the most anticipated moments from each surgery that Kyler has had now has been seeing him afterward, but more so the first chance to snuggle again. It has always been a few days wait post-op before I can have my Buddy back in my arms, and each time it is the best feeling. I think that a big part of that anticipation is due to the opposite side of that - dropping Kyler off with the anesthesiologist in the dreaded, horrible hallway that leads to the OR. That hallway and those double doors have probably heard the sobs and felt the tears of more parents and loved ones than anywhere else in the world. I can very distinctly remember those moments from each of his surgeries, and this recent one was no different. But I will save those memories in my head and heart for now and get back to the happy snuggle memories. 

Snuggling Kyler for the first time in the CICU after his Fontan (most recent surgery) was just as special as getting to hold him as a baby. This surgery came with a lot of anxiety and fears for me, and I think that just being able to have in safely back in my arms, knowing that he was making moves in a positive direction was what I really needed. It did not take him very long at all to fall asleep laying on me. Just getting up and moving to the chair and my lap next to the bed was a lot of work for a 4 year old that just had his chest opened and messed with days earlier. 

First snuggle after the Fontan

Once we moved out of the CICU we had a bit more room to move about and made it easier to snuggle. My favorite was the day that he got out of his bed and came over and laid with me on my bed (really awful pullout chair thing that they call a parent bed - they are horrible!). He snuggled right up next to me and just started giggling. That got us both laughing and we couldn’t stop. It was the best! We still encountered a few complications and hard days after that moment, but it was then that I really felt that he was doing better and things would be okay.

"I can't stop laughing!"

Being Silly

Daily nap time with my Buddy

🥰

I asked Kyler about some of his favorite moments from the hospital and he actually has a lot of positive memories. The one that always comes up first is all of the time spent in the playroom. We were lucky enough to go almost daily, even while attached to oxygen and two chest tubes. Jacob was great about chasing him around the room while attempting to not pull on the chest tubes or pull his face off with the oxygen cannula. It was comical to watch, and added a few stressful moments for our nurse as she would periodically have to yell at Kyler to slow down ;) Kyler loved playing with the train table, hot wheels racetrack, pretend doctor play, and air hockey. Jacob and I loved being out of the room and watching Kyler be able to just be a normal kid….even if he was attached to drains and tubes. 

Playroom!!

Dad trying to keep up.

Trains all day

Soccer! The ball was bigger than him.

More trains with Dad.

The hospital is definitely full of its share of hard moments and tough memories, but also some of my most special memories.

Here We Go Again

Time to resurrect the blog! Here we go ago, it's time for surgery #3. The countdown has started and we are less than 2 weeks away from Kyler's Fontan surgery. This surgery finishes the re-plumbing of his heart to make it work the best that it can with the defects it has. Medically speaking, it connects the inferior vena cava to the pulmonary artery so that the blood from the lower half of his body can go to the lungs to pick up some oxygen. This should help his oxygen sats raise from the low/mid 80s to the low/mid 90s. ("Normal" sats are above 94). This should help him be less purple/blue and more pink, and also help him not get tired so fast while he's playing.

I've been asked 2 questions pretty frequently:

1. How long will this one last/will he need another surgery? Answer: we don’t know. We hope that this procedure buys Kyler a lot of time...like 30+ years would be amazing. But we also know that the next step if this fails for any reason is a heart transplant. We are praying that this one goes well and holds for a really long time, and that soon there will be even better medical advancements that will benefit Kyler and those with CHD.

2. How are you doing? Answer: I don't know. Jacob is actually feeling pretty positive about things so I am trying to ride off of him. Honestly, I have been struggling with this one, and due to some other things. I have managed to get myself stuck in a pretty nasty spiral that I'm trying to climb back up from. It's been difficult, but I like to think I'm making some progress. 

Getting through Kyler's heart cath a couple of weeks ago was a big step for me. I survived the horrible waiting room (I seriously dread that place) without going too crazy. Jacob had some important work things he couldn't leave so he stayed in St. George with Kallie, so it was just Buddy and me. Luckily his cath was pretty quick and didn’t take any longer than what the doctor told me to plan for, so I didn't have to wait in that stupid room any longer than I anticipated. Kyler surprised me with how fast he bounced back, and that he was only sad about the long day at the hospital instead of playing at Uncle A.J.'s house with Andi and Aunt Robyn. He was mad at the pressure dressings and tape that we had to take off the next day too. My fingers are crossed that surgery goes better than I fear too and that recovery won't be terrible.

I already know that Kyler is much braver than I am, but he is also helping me through this journey. I am planning on updating this blog a little more because writing it out is therapeutic for me. And hey, if our journey can help anyone else or raise more CHD awareness then I am all for it. Please reach out with any questions that you have. We love talking about our Brave Buddy and our journey.

Sleepy boy after his cath

Awake and just laying around waiting...and waiting

Picture from his cath showing the Glenn and narrowing in the PA

One Year!

One year! It has been exactly one year since Kyler's second heart surgery and what a year it has been! At times it feels like it was so long ago, yet it is still so fresh in my mind and feels like it just happened. The emotions leading up to today have been extremely mixed - excited to hit such a big milestone and anniversary, relieved to have it behind us and to be able to keep moving forward, nervous because it makes me feel freaked out all over again, and afraid of the constant unknown moving forward. It has been a rollercoaster that I don't think I will ever get "used to", but I have learned so much from it. I have learned that PTSD is a real thing and triggers don't always make sense. I have learned that people will say some really stupid and hurtful things. I have learned that walking away from toxic people can suck at first, but makes life so much simpler. I have learned what it means to have a true friend. I have learned that bad things happen to good people. I have learned that strength can come from dark moments. I have learned that the tiniest of people can be the toughest, bravest, sweetest, and biggest warriors. I have learned that Kyler may only have half of an anatomical heart, but his heart holds a greater love and purity than anyone else's. I have learned that complete strangers can positively change perspectives with a couple of sentences that I will never forget. I have learned that asking for help is not a sign of weakness, but that I still try to be more independent than I sometimes should. I have learned that it is possible to absolutely hate and love the same journey - I would never trade this heart journey, but wish that it didn't have to happen too. I have learned that I really am the luckiest momma in the world.


In the last 365 days Kyler has made a lot of improvements and we have been able to just "enjoy the ride" for awhile. We don't have to see a cardiologist every other week anymore, or weigh him every day, or check oxygen levels throughout the day, or wrestle with oxygen tubing everywhere, or freak out about his weight and exactly how much he eats each day. We saw his cardiologist a couple of weeks ago and everything is looking pretty good. We even got the go ahead to not have to see him again for 6 months! We've never gone longer than 4 months without seeing anyone from cardiology. It's awesome! The plan is to watch and wait until he needs the Fontan procedure, which we are hoping won't be until he is 4 or 5 years old. Until then we get to enjoy life and be "normal." Things that we are watching for that would indicate a need for the next surgery are decreasing oxygen levels or blue spells, increasing tiredness and lack of energy, or that he wears out quickly doing simple everyday things. Right now his oxygen levels live in the mid-high 80s (don't worry all of medical friends, 75-85 is totally normal for him), and he is not lacking in the energy department at all!!! In fact, at one of his recent visits with his pediatrician we talked about how energetic he is and joked that if he didn't have heart defects he would be impossible to keep up with and that might be the reason for it.

The biggest concern lately, as always, is his weight gain...or lack of weight gain. We have been seeing the pediatrician at least monthly to check his weight because he is dropping weight percentiles. We have been trying a high calorie diet for a few months and have not been seeing much of a difference. Due to how his heart has to function, Kyler has a higher metabolism and burns through calories so much quicker. Add that with his extreme desire to never sit still and need to be outside no matter how hot it is, and it takes an awful lot of calories just to maintain his weight. After months and months of watching his weight closely and discussing it with all of his doctors it's something to continue watching closely but right now they aren't worried about it... hopefully that means we can start backing off of everything I joke all the time that I wish I could eat like him and never gain a pound.


We had fun with a little photoshoot to celebrate his heart birthday. His scar has healed remarkably well and is barely visible';! His scar is something that we are incredibly proud of, and want him to always be proud of too! Since the beginning we have called it his "extra tough and brave mark." Now when you ask him where his extra tough and brave mark is he will point to his chest. It's adorable!

Overall Kyler is doing as great as he can be! I am extremely grateful for that! I think back to what I was doing one year ago and it is humbling and fills me with warm fuzzies to see the progress that he has made; the progress we have made as a family. He has brought us closer together than I ever imagined, and filled a gap in me that I never knew I had. He is a miracle! And the toughest, bravest, and strongest person that I know!

Showing off his Extra Tough and Brave Mark

Trucks!!!

Why fit in when you were born to stand out

The Glenn Surgery Day -August 7th

The long, not so anticipated wait has come, and is now on it's way away. Surgery #2 has been pretty good so far. The adventure actually started on Monday since we had to spend a bit of time at some pre-op appointments. We first met with the nurse practitioner to go over all of Kyler's health history and to discuss the plan for surgery day (i.e. when he could eat, bathing with special cleaning wipes, antibiotic ointment, etc.).

Then we adventured down to lab for a blood draw and to imaging for a chest x-ray. He hated the x-ray more than the poke, but wasn't a fan of either of them -I wouldn't be either.

Playing with his toes and his new fancy name band

Avoiding his nap, but being good

We surprisingly got done with all of that a lot sooner than we anticipated so Jacob was able to get some work done on the balcony that overlooks the city while Kyler avoided a nap so we watched helicopters, cars, and birds together. ;)

The boys hard at work

Watching all the helicopters

Random side note, but meaningful (at least to me) - the entire time we were up on the balcony there was a huge black and white bird that was sitting by us and making all sorts of little noises at us and Kyler would talk back to it.

My grandma passed away a few years ago and she was a huge bird watcher and lover. Ever since then I know she is close by watching over because I frequently see some really pretty birds that just seem to hangout nearby. I knew that this bird was just grandma hanging out, checking in on her great-grandson, talking with him, and letting us know she would be making dang sure everything goes okay (I may or may not get a little tiny bit of my stubborn side from her). After working and talking with Grandma M&M we went down to Temple Square and City Creek mall to do some wandering, talking, and a small Angie sized dose of retail therapy. Kyler loves exploring around in his stroller and was still determined to not take a nap so it was a win-win for everyone.

Monday night was a long night but not filled with long enough amounts of sleep for any of us. We made sure that Kyler was fed as much and as often as possible until he was cut off at midnight. Then Jacob and I took turns tossing and turning pretending to sleep. We woke Kyler up at 3:45 to attempt to feed him some apple juice just so we could hopefully fool him into thinking he had a full belly by the time wake up and breakfast time rolled around. No such luck! He hates clears! He hated the apple juice and hated water. Looking back now, it probably would have been better just to let him sleep through the rest of the night like he usually does. Oh well! Live and learn!

Tuesday morning we had to check in to the surgical area by 5:45! Way too stinking early! But, I would rather wake up early (aka stay awake all night) and have the early surgery than to wait around all day.

Pre-op was a bunch of waiting with intermittent bouts of craziness and people. We were able to have a great discussion with our favorite surgeon. We really can't say enough great things about him! We like and know a lot of great things about the cardiothoracic surgeons here at Primary's and you really can't go wrong with any of them, but Dr. Husain is top notch and we are so pleased to have him as part of our team. I particularly love that he cares just as much about Jacob and I and how we are doing as he does about Kyler and his heart and overall health and life. That's just unfortunately not a super common trait in healthcare sometimes. He was super pleased with how well he has been growing. He told us that he was going to be a bit aggressive in the operating room with a couple of decisions we have been keeping an eye on during our ECHOs. The first was the ASD (hole between the top two halves of his heart) and whether or not to take out the septal wall or not; the other was some stenosis (narrowing) of the right side of his Pulmonary Artery above where the band was placed during his first surgery. He did not want to do something that wasn't going to be necessary (especially because fixing the ASD would mean having to stop Kyler's heart and then restart it), but he wanted to make sure that whatever Kyler needed to have done would get done right the first time rather than having to come back for another surgery before the Fontan in a few years. Sounded like a great idea to us! I appreciated that he expressed some sympathy and apologized that having to go through this is simply not fair, and that he can only imagine how hard it is to get to know this child for the past 5.5 months and watch him develop a personality only to have to hand him off to a surgeon again and trust them to operate on his heart. He definitely is not wrong about that! I think he must have been a therapist or something similar in a former life ;) He is so easy to talk to and just gets it.

After our therapy and education session with the surgeon we were able to talk with the anesthesiologist, and much to our pleasant surprise it was the same one we had with Kyler's first surgery back in February. We love her too!!! She also commented on how big he got and how good he looks. (If only that message could have been passed on to the high risk weight watchers club a month ago :P -would have saved a great deal of stress and heartache). We signed all of our fancy papers and then took the walk down the most hated hallway of my life!!! I especially hate that at the end of that hallway is where we have to say our see ya laters to my little peanut buddy! The next step is equally as mean, you have to hand off your child and then walk back down the horrible hallway alone. Tears are also involved and all of the emotions start to catch up all at once. It sucks! But luckily, I have an amazing husband to literally hold me up and is my rock!!!

Stole the measuring tape and had a new toy to play with

So cute in his gown, pants, and socks that were about 20x too big

Finally gave up on breakfast and fell asleep with some smiles

Loves reading! 

Since I can definitely not wait in the waiting room, let alone for a 6-8 hour surgery, Jacob and I decided to go on a little date for breakfast. We went back to Temple Square to walk around and ate at the Nauvoo Cafe and then sat looking up at the temple while we talked and awaited updates. It was a little strange to see the temple grounds so sparse so early in the morning, but it was great to be able to walk around with hardly anyone else around and just feel the peace.

We then went back to the house to attempt a nap, but that didn't last as long as we were expecting as we awoke to a page telling us that Kyler's surgery was wrapping up and that the surgeon would be ready to meet with us soon. So we headed back to Primary Children's and luckily didn't have to wait too long (I really have come to hate waiting rooms!) before Dr Husain came up to talk with us. He was very pleased with how everything went, and Jacob and I were happy that it was done quicker than we were expecting. He did end up needing to place a patch on the pulmonary artery to keep it wide and open, and also took out the atrial septal wall to keep that wide open.

Waiting to talk with the surgeon

We ended up having to wait a while to get back to see him in the CICU - Have I mentioned that I really, really do not do well with waiting...not patient enough, hate not knowing what is going on, and so many emotions and bad memories of having to wait in waiting rooms. During our waiting they were able to extubate him (take out the breathing tube), and they were giving him blood when he decided to start waking up all pissed off and kicked out the IV making a bloody mess everywhere! He spent most of the day asleep and resting, but man when he would start to wake up he was not comfortable and let everyone know!!! He was pissed!!! They have now nicknamed him Jack-Jack from The Incredibles because of his blond hair and the fact that he goes from totally chill and okay to totally pissed and not okay in less than a second!

It's a trial and error balancing act to keep him comfortable and we're still trying to figure it out. It is super common and expected for these kids to be pretty uncomfortable after the Glenn surgery because it changes the pressures from the blood flow in his upper body. His head and arms now have 3-5 times the pressure that they did before the surgery so he has a pretty horrible headache, in addition to all of the surgical pains. Poor kid! He is a trooper and so tough!!!

The green things sticking out of his ears are indeed earplugs. Since he woke up so mad and there was so much going on with him and his friend next door, they tried decreasing as much stimulation as possible and made it quiet. 

Robo-baby during his EKG

Primary Children's is associated with the Ronald McDonald House Charities, and just down the hall from the PICU/CICU they have a few little rooms for parents to stay. Jacob and I were lucky enough to be able to stay there for the night, which was a big relief to be so close for the first little bit. We both tried to get a bit more sleep than we had gotten the night before; we know that Kyler is in the best and most capable hands and is receiving great care and on the road to recovery!!!

All of the workings of a post-op baby

For those that are curious about all of the tubes and wires- Day 1 includes:

• 3 chest tubes
• Foley catheter
• Arterial line (measures blood pressures continually)
• 2 Peripheral IVs (including 1 already kicked out)
• An IJ (neck central line IV)
• CVP monitor (Central Venous Pressure- measures the pressure close to the heart)
• Nirs monitor (attaches to the forehead to measure cerebral oxygenation)
• Regular pulse oximeter
• Heart monitor
• Pacing wires (wires that are connected directly to the heart muscle that can be used to help his heart contract electrically if needed - these are not hooked up to anything right now but there if needed)
• 4 different IV drips (Nipride to keep his blood pressure from being too high, Milrinone to help his heart squeeze better, Precedex to keep him sedated, and D5 1/2 NS to keep him hydrated). Also a couple of syringes for the art line and CVP)