Friday, June 2, 2017


A week ago today we made the trip down to Dallas Children's Medical Center for Ella's regular cardiac check up. We always hope for good news, but the "what ifs" seem to be really good at finding fears that I've been trying to suppress since the last good report. The thing about having a child with a heart defect is you kind of never know when something that would normally not be a big deal could possibly be a big deal. You're tired? oh, no big deal. Or is it, you're tired? Okay your oxygen is low and this is the start of going into heart failure. Sounds a little dramatic, but the reality is, it could be happening. So my job as her mom is to try to do my best to discern what symptoms and complaints are just typical everyday issues, or are they life threatening signs of needing cardiac intervention. No pressure right? Overall though, going into her appointment all of our questions and concerns, aside from the obvious fears of heart function, were minimal. Thankfully her echocardiogram, and her EKG looked stable! She is growing well, and we are always so very thankful for these good reports! Her doctor is sending us to two different specialists for non cardiac related issues, but nothing too severe. She is still not eating great and has tummy pain a lot, plus she has super hypermobile joints and they are causing some pain. One of the things that her cardiologist said to us was that when he looks at her, he thinks she is going to do very well, he said he starts to think about what adult cardiologist he will send her to. Did you catch that? ADULT. Can I just say that when I was a scared pregnant mama being told my baby only had a 20% chance of survival (that would include multiple open heart surgeries and or a heart transplant) and that once she made it past that was told it's only a 50% chance she would make it to the age of  5, I dared not even picture adulthood. In fact even now as I look at my sweet 6 year old miracle I sometimes (read, too often) allow the fear of the unknown to overshadow the hope of her future. I'm working on it. It's a tough balance. The one between the reality that we could lose her and now thankfully the reality that she might continue on for many years into adulthood! I'm going to take this opportunity to give a grateful heart mom shout out to medical advancements, medical research, and all those in the field that don't give up on our children! Thank you for making adulthood possible for our children that didn't have that hope before! Ella is doing very well, she has just completed her 4th year of dance, and this year she participated in her first year of drama. Can I just say her bravery on stage is pretty amazing to me! She still loves to dress up as different characters, she writes THE cutest books, she is a fluent reader, and has just become a 1st grade graduate! Our family is just so thankful for all the prayers we have received over the years! Ella's 4th anniversary of her 4th open heart surgery is Monday, June 5th. We affectionately call it her "Fontaniversary". She loves to celebrate her anniversaries especially this one. Oh goodness, when I think back over what all she has endured and think of where she is now, I am so humbled. What a beautiful gift her life is to our hearts. She is such a deep thinker (like her daddy), she has the invention bug (like her granddaddy) and she has a love for all life. She has the potential to change the world. I am so honored to be her mom. A few mornings ago she came into our room and crawled into our bed for some "mommy time" as we laid there she paused and thoughtfully said "mom?" "what?" "I like being your daughter." Friends, I wanted to cry. If you are a mom chances are you are all too familiar with "mommy guilt", that big ugly liar that tells us we aren't "good enough". Ya, well, when your baby so genuinely says something simple yet beautiful that is basically the opposite of that stupid voice in your head... all the feels. Because this is "Ella's Journey" I haven't shared much about my health here on her blog, but I'm going to give a brief update on my health today as well. I have several health issues that we have been trying to treat for the last 7 years or so, but we just recently spent 7 weeks at the Mayo Clinic in MN getting a ton of tests run. I also received some very intense and somewhat invasive treatments that caused some fairly significant memory loss. During those treatments we had some really exciting discoveries that we are hoping will help in our next treatment plan moving forward! We also discovered that although I've had my heart thoroughly checked in the past by several cardiologists, they had all missed something significant. I was also born with a Congenital Heart Defect. I have something called a Bicuspid Aortic Valve. The cardiologist told me that no intervention is needed at this time, but that it will most likely require an open heart surgery at some point. Ella was excited to hear we would have matching scars. I have to admit, excitement was not my first reaction. My sweet sunshine helped put a positive spin on a really crummy situation. I won't bore you with the other nearly 20 diagnoses I have been labeled with, but we would be thankful if as you continue to pray for our girl you would pray for her mama and daddy too! Also, side note here, Ella and I are the luckiest girls in the whole entire world to have the husband/daddy that we do! I'm pretty sure no one has ever been so loved and cared for in all of history! What a man, I'm so grateful that Ella has such a selfless role model to follow! Anyway, I'm sorry the updates haven't been as frequent as they have been in the past, but with my health, things have been quite challenging and thankfully Ella has been living life without many complications. So although the updates may not be as often, we still very much value your prayers and support as we continue on the path of raising our sweet sunshine!