Update

                              

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!        

                                         

           

 

                                    

                                        

                                 

                                 

CHD awareness week

I wrote this a few years ago, but I updated it a bit for this year. Congenital Heart Defect Awareness week is Feb. 7th-14th. National wear red day was this last Friday. 

The other 364 days.

It's not just about wearing red one day a year. 


Today is day 1 of CHD awareness week. Today I want to share a little bit about the life behind the red. 


On national wear red day, we dress in red and take cute pictures to post to bring awareness. We show off our warriors and remember the angels. We throw out statistics and ask you to join our cause. All of these things matter. They are important. They are good. These are all things that we should be doing, but that is it for most of the outside world. Now what? For you, it's over until next year. For a family affected by CHDs it is day in, day out, 24/7. It never ends. It never goes away. It is always there. 


Today I ask that as you read this post that you think about the other 364 days of the year. The other 364 days that we as a heart family face the ugly reality of this life. If you had a child that you knew would be taken from you, but you had no idea when, wouldn't that be scary? If you had to, on multiple occasions, hold your child down while they cry in fear, wouldn't that haunt you? If you have been told that your child would have their heart stopped and restarted multiple times, wouldn't you want to hide from reality? If you knew your child would have delays, restrictions, and extra hurdles, wouldn't that make you wish you could take away the pain? Do you lay in bed at night and wonder if your child is still breathing? If their heart is still beating? Do you watch every day for things that aren't quite right in your child's body language, energy level, or skin color? Do you have medical equipment in your home? Does every decision about what you do, where you go, who you see, what you eat, etc... ultimately lead you to make a choice based on what is least likely to somehow land your child in a hospital or worse, lead to death. Imagine the pressure that comes with that territory. 


Congenital Heart Defects are hard to understand. They happen at random, and range from mild to severe. Some require only life long maintenance by a cardiologist. While others require multiple open heart surgeries and or heart transplant. In some cases they can even require a heart and lung transplant due to damaged lungs from lack of proper heart function. There is NO cure. Transplant is not a cure. In fact when Ella was a week old and we went through the process of getting her listed for transplant, we heard all the positives and negatives of a transplant and let me tell you, while transplant is AMAZING and many can live semi normal lives and thrive with a new heart, it is safe to say you want that to be your very last resort. It is truly a scary thing to face. We were blessed that Ella improved enough to keep her native heart at least for the time being. Going through that process was scary especially knowing we may still have to go that route someday in her future.


When a parent receives the news of their child having a CHD, especially if it is one of the more complex ones, their world has forever been changed. Flipped upside down. That feeling that you get that day, that sinking feeling, that anxiety, that guilt that maybe you did something wrong, those emotions, those fears,... they never really go away after that. Sure, they become your "normal" you learn to deal with them and to hold them in and process them later. You do become somewhat desensitized to things that are your reality. You can say things like, my child is terminally ill, my child has had 4 open heart surgeries, my child is turning blue, etc... without bursting into tears. You've heard it, thought it, and said it so many times, that it's... normal?... Yet it feels so unnatural. It is unnatural for a parent to lose a child or to face it everyday, yet for many it is reality. There is a certain grief. The actual grieving process that you go through when you lose a loved one or when you have received news that you are losing a loved one. Maybe it's a long battle with Alzheimer's, maybe a rough bout with cancer, maybe a car accident and it's time to turn off the life support. However you face it, you grieve. I have lost many people in my life. I've been to more funerals then most. Some have been sudden, others have been dragged out painfully slow, like my sweet great granny who I helped care for day after day as she slipped away. Some lives seem gone too soon, yet others you know it was time and even have a small sense of rejoicing with their full life now fully lived. Yet you grieve. You grieve. In many ways, receiving news that you will be giving birth to a terminally ill child feels like a death. Though we have been blessed and Ella's life has already surpassed the expectation, we know that her heart is only good for a time, and so we grieve. This is Ella's life, but it is also a long drawn out process of her death. One might say that is the case of all life and they would be correct. No, no one is promised tomorrow, but I venture to say that if you were told your child would likely die from their sick heart vs. someone saying anyone could pass at anytime. You would understand the difference. It is different. So we grieve. The odd part about our grief is that we have long bouts of happiness and then boom the grief hits us like a soccer punch to the gut, taking away our breath. The stages of grief bounce around hitting us randomly over and over again. Grief is exhausting. While I'm not a grief expert, I speak from experience when I say grief does not only occur once the one you love has passed. The long years of leading up to it force you to face that reality and those fears time and time again. 


So family's facing CHDs ugly reality the other 364 days a year thank you for wearing red, why? Because you, someone who has the luxury of turning a blind eye to the pain of the heart world chose to embrace it, even if for one day. A choice to stand arm in arm with the weary heart families and bring hope for the future. It makes a difference. You make a difference. Not only does it show the heartbroken and the grieving that they are not alone or forgotten, but is shows the world that there is something out there that is stealing the lives of our children! While I don't like the comparison of CHD's to childhood cancer in the whole debate of which is worse, because lets face it, they both are horrible and both take far too many lives, I would like for CHD to be known by the world the way cancer is. If someone hears that a child is diagnosed with cancer, they instantly know what that means; however, if someone is diagnosed with a CHD people say "what?" Did you know that in the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined? Does this take away from the horrible fact that cancer exists and that it takes these precious lives? Absolutely NOT! But doesn't it make you wonder why you haven't heard of Congenital Heart Defects before perhaps following Ella's story. It makes me wonder why I didn't know what that meant before Ella was diagnosed. If it is killing twice as many more children then all childhood cancers why didn't I know about it? If a doctor had looked at me and told me my child had cancer vs. being told she had a CHD I would have known what he was saying. Why? Because of lack of awareness. Again, I'm not in ANY way taking away from the pain of cancer, in fact, if cancer had been our diagnoses it would have been devastating. I'm only raising the question of why isn't CHD known? What can we do to change this? Why does it even matter? Well, it isn't known because of lack of funding and awareness, we can help change this by speaking about it, by wearing RED on national wear red day, by funding pediatric heart programs, It matters because kids are dying, mine included and truth be told it could be yours. Ultimately awareness leads to funding and then research and new surgeries and medications and treatments come into existence. That gives us hope. We need people to fight for them, to constantly research. A hospital with the sole focus being find a cure for CHD's. It doesn't exist. We need funding, we need support, we need awareness. That's why it matters if you wear red on national wear red day, that's why it matters if the people in your life are familiar with the term CHD. That's why congenital heart defect awareness week matters. 

Awareness and research are what turn this...

...Into this. 

It matters, because If Ella had been born 5 or 6 years before she was, there would have been no chance for her at all. It matters because advancements are being made and lives are being saved. Let's keep bringing awareness to a disease that shouldn't steal away our beautiful children!