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