WARRIORS & ANGELS
WE FIGHT FOR OUR WARRIORS AND ANGELS WITH COMPASSION, PRAYERS, AND LOVE.
WE FIGHT FOR OUR WARRIORS AND ANGELS WITH COMPASSION, PRAYERS, AND LOVE.
WARRIORS & ANGELS
WARRIORS & ANGELS
WE FIGHT FOR OUR WARRIORS AND ANGELS WITH COMPASSION, PRAYERS, AND LOVE.
WE FIGHT FOR OUR WARRIORS AND ANGELS WITH COMPASSION, PRAYERS, AND LOVE.
Congenital Heart Disease is so unpredictable, no case is the same. Some kids struggle while others with the same diagnosis seem to thrive. Sometimes a child can be doing so well and just minutes later be only holding on by a thread. Right now there is no cure for CHD, only surgeries and procedures to palliate or make symptoms less severe. It's a world of tubes and oxygen, surgeries and strong fighters. The stories below of these warriors & angels are the sole purpose of World of Broken Hearts.
Before you, I didn’t know.
I didn’t know that this world of little broken hearts existed.
I didn’t know that some babies must fight for each breath and every heartbeat. I guess, I thought I knew pain. I thought I knew desperation, but who am I really kidding? I didn’t have a clue. How can you know until you’ve lived upon the precipice of loss and prayed that today’s crisis wouldn’t bring your whole world crashing down?
Until you’ve lived it, you can’t know what it’s like for all of your hopes, dreams, worries and cares to be wrapped in such a tiny package that you have no control of.
In the early days, when it became clear that we were not guaranteed tomorrow, I made the conscious decision to know every little detail of you. I’ve spent countless hours studying you with an intensity that can only found in a desperate mother’s soul. Every aspect of your precious face is etched into my heart too deeply to ever fade. But past your sweet facial features, curls, and those precious little fingers and toes (that look so very much like your father’s) I know you like no mother should.
I know the harsh murmur of your tiny surgically altered heart and the pale sheen of your scars. I know if you’re cyanotic or acidotic with just a glance. I know your baseline capillary refill and what colors your skin should be but often aren’t. I can tell your fluid status by looking into your eyes and a gentle squeeze of your tootsies. I know your sweet little eyes focused and glazed. I know you in the pits of delirium and withdrawal. I know your medications, their side effects, and your new found allergies. I know the difference between contented punches and kicks, and those of delirium or pain. I know how much of a given narcotic you can handle weaned and at what frequency. I know your cries—because of frustration, withdrawals, anger, pain, or that which you save for times of crisis.
Before you, I thought I knew strength and resiliency. But, once again, I didn’t have a clue. I associated sickness with weakness and frailty. How could I have ever been so wrong? Seeing you, and other little loves like you fight for survival, has taught me so much in life. You are stronger than I could ever imagine being and more brave than any legends of old. Though your odysseys are wrought with uncertainty, pain, and fear—you fight on via sheer force of will. You have endured more in your infancy than I shall ever, and yet you’re capable of love and sharing sweet smiles (especially when your daddy gives you Eskimo kisses).
Precious baby, because of you I have delved into depths of pain and desperation. I have felt true and utter helplessness and vulnerability.
But, I have also soared with hope and swelled with pride. I have learned to love wholly and completely, without regard to tomorrow’s unknowns.
Before you, I never wished to know of this world of broken hearts but here we are.
And you know what baby?
I could tell you about the approximately 40,000 babies that are born every year with a congenital heart defect. That is roughly 1 in 100 newborns, every year.
I could tell you about the half a heart that Adalynn was born with or many other different congenital heart defects that affect so many children across the globe. I could tell you about how underfunded CHD research is. I could tell you how babies with CHD's require a heart transplant at some point in their lives, why and what you could do to help.
I could tell you that Adalynn is one of the 20 people that die every day waiting for a transplant. Or, I could tell you about my perspective of what it was like being in that room to document their last moments together as a family of six.
But there aren't any words to describe the pain and love I witnessed. CHD claims so many lives, too many lives. It tears families apart and forces siblings to grow up way too fast. It changes you in every aspect of your life, and to the very core of our heart and soul. It is hard, difficult and unfair. This. This is the reality for many CHD families every day.
Fly high baby girl. You fought so hard and touched so many lives.
Baby Bostyn is a triplet. She was born on September 23, 2018, with Hypoplastic Left Heart Syndrome. The left side of her heart never developed before birth. At 9 days old, she had her 1st open heart surgery and got bands on her pulmonary arteries. At 6 weeks old, she had her 2nd open heart surgery and underwent the Norwood procedure. Three days after the Norwood surgery, Bostyn had to return to the operating room for the 3rd time.
She had developed a blood clot in the root of her aorta. There was a 1% chance of successful removal of the clot, and God saw her thru that 100%. The next day, the doctors discovered that Bostyn had developed a brain bleed, but there was no evidence of seizures or stroke. She spent an entire week on an ECMO machine (life support), with her chest left open, before she was strong enough to come off of it and get her chest closed. One week after that, she was able to get her chest tubes removed. Then, another week later, she got her breathing tube out. By this time, she was 10 weeks old and doing so well that they decided to give her a big girl bed instead of a baby crib. At 11 1/2 weeks old, Bostyn had her 4th surgery and received a G-tube in her stomach to help her with feeding. On December 18th, she had graduated from the PCICU and was moved to a regular room. They were prepping her to go home soon.
On Christmas morning, Bostyn went into cardiac arrest. She received chest compressions for 30 minutes and was put back in the PCICU and back on ECMO. They did all kinds of tests on her to try to figure out why this happened, but they couldn't find any answers. On New Year's Eve, Bostyn did a clamp trial to see if she could come off of the ECMO machine, but her heart rate dropped into the 50s once again, after being off of the machine for only 1 hour. So, she remained on ECMO.
Bostyn had developed a new brain bleed and was placed on the list for a heart transplant. On January 4th, Bostyn had a 5th heart surgery and received a permanent pacemaker. The pacemaker was put in place as a back up for her heart, in case she was to go into cardiac arrest again. Since January 4th, Bostyn has been doing very well. She is still facing at least 2 more open-heart surgeries, but she is definitely a fighter. This baby has defied all odds, so far, in her short life span. God has taken great care of her. He has got a special plan for this little girl, and I can't wait to see how He is going to use her.
Alaiya's Mom - Lacey:
After our sweet baby girl, Alaiya passed of bacterial meningitis, we were pulled aside and asked about donating her organs. My husband and I did not hesitate as we both replied with "YES!" Alaiya was such a giving child that we knew it was the right thing to do. We knew that she would be saving others' lives.
When we found out Alaiya's heart saved a 10-month-old little boy, we were very pleased with our decision on having Lai be a donor. The entire first year was extremely hard for us all, losing my mother and our daughter 8 days apart was the worst thing that has ever happened. We shortly found out we were pregnant with our third daughter. Grieving on top of being pregnant was not easy for us by any means. Our 3-year-old was devasted she lost her sister and best friend. We definitely came even closer together as a family. We often wondered if the recipient family was appreciative of the beautiful gift Alaiya had given. I, myself prayed we would be able to meet them and hear her sweet heartbeat again.
On December 28, 2016, our photographer reached out to me and said someone special wanted to write us a letter and asked if it was okay if she gave our address. I told her yes. But I was so curious who it possibly could be. She finally broke down and told me it was the mother of the heart recipient. I was extremely emotional yet happy. Angela messaged me on Facebook and we shared our stories. She couldn't tell me enough how grateful they were for giving Mason a chance at life and that she and her family will make sure he lives a fulfilling life. When we saw for ourselves how she ALWAYS recognizes Alaiya in her posts about Mason, we knew she loved her.
We talked about meeting all year, we knew it was important for all of us to have a relationship because we are connected for life. It happened to work out perfectly for us to meet on September 25th because Mason had a doctor's appointment in Nashville and that was a halfway point for all of us. My husband and I had a rollercoaster of emotions running through us. Seeing Mason for the first time, we instantly felt a connection. So many feelings were running through me. I was happy and sad all in one. Seeing for ourselves how happy and energetic Mason is was a relief. It showed us how "perfect" Alaiya's heart was for him. This entire experience is "bittersweet" because as parents we want all of our children with us, and that isn't our situation. In a perfect world, Alaiya and Mason could have both been saved and Angela and I could have met in the baby aisle of Target, but that isn't our story. We are so glad Mason is doing well, but as parents, we would give anything to have our baby back. We definitely saw "Alaiya" in him.
We are so happy our families met. It was a great visit and we know for certain that we could not have a better recipient family. The love they have for our sweet Angel baby shows in volumes. We are forever bonded as a unit!
Mason's Mom - Angela:
Meeting our donor family was so special. I am still amazed at how quickly Mason started to interact with them. It normally takes him weeks to warm up to people he's never met, but it was different with them, almost as if he's known them for ages. I am a firm believer that a parent's love is forever woven into our hearts, and there's no doubt that the heart that beats inside of Mason knows the familiarity of Brandon and Lacey. I am forever grateful for the gift of life, and I will always make sure that Mason lives a life big enough for two.
