Our youngest daughter turned one year old last month and what a year it has been! I wanted to take a moment and share her story, our story, and the incredible people who have helped us along the way.
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| Super excited baby in a pumpkin!! |
Juliet was our "surprise" baby...SURPRISE! We were told we would
never have children on our own for various reasons so having a third baby was completely off the radar. When we found out we were pregnant, we were shocked, amazed, and humbled. You can think you have everything planned out and "whack," the universe will remind you of how little control we really have. Most of all, we were delighted.
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| Our little water dragon! |
Halfway through the pregnancy, we received more shocking news. According to numerous tests, scans, and doctors, the growing baby inside me had a life threatening heart defect.
Transposition of the Greater Arteries (TGA). Basically, the main arteries coming out of the top of her heart were backward leaving her whole body oxygen deprived once she needed oxygen. The only way I could sleep at night was knowing she was in the safest place on the planet, my belly.
Fast forward four months of planning and doctor visits, reading and learning, tests and testing, crying and laughing, and pumpkin spice cheesecake, Juliet was born via scheduled C-section by a team of 30 nurses and doctors on a gorgeous October morning in Atlanta. After hearing her cry for the first time, they placed her on my chest for a few moments and then whisked her away to save her life.
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| My beautiful blueberry! |
She was born catatonic aka blue and she was beautiful. Big, strong, and full of life. Since the NICU at the Womens hospital couldn't care for her the way she needed, at 3 hours old, she was transported by the most amazing team of people along with her very own police escort 10 miles away to the
Children's Hospital of Atlanta. Although being in a different hospital than my baby was one of the most heart wrenching feelings, I knew she was in the best place and in the best hands. I was released from the hospital less than 48 hours later.
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| Hard to believe there is a baby in all that mess. |
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| By her side every step of the way. |
She had her first surgery at 16 hours old. They preformed a catheterization to make rip in the middle of her heart so the blood would mix better until her
Arterial Switch Operation (ASO). Once the surgeon,
Dr. Kanter, was available, he saved our daughters life during a 9 hour procedure to correct her tiny heart the size of a strawberry with arteries the size of angel hair pasta. I have never been one to be star struck or idolize someone but this man really is a superstar and a hero. I can't even express in words what it felt like when he walked into the waiting room and said "everything went great and she's doing well." I think I exhaled for the first time in 4 months. She made it. Lots of miracles.
The first time we held our new baby, Juliet Ivy, was on Halloween at 10 days old. Needless to say, it was very special. She recuperated wonderfully and we were released from the hospital three days later. RIGHT!?! From birth to open heart surgery to going HOME in less than two weeks. She really is a rockstar.
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| Going home is VERY serious! |
Once home, we quickly fell into new baby routine having not left this stage that long ago... 1 month old baby plus 23 month old twins! Lots of littles! The twins were thrilled with their new sister.
Juliet thrived and grew and developed beautifully. As with any surgery, there can be complications. At five months old, she required open heart surgery again for stenosis or narrowing of the arteries at the suture site due to an adverse reaction. It's VERY rare but she seems to like hanging out in that category. The second surgery was no less than the first by any means. One of the hardest parts was for her first surgery...they took her from me, for her second surgery...I had to give her to them. To hand over my perfectly healhty looking baby knowing what was going inside of her was so difficult. Thankfully, we knew our way around, were familiar with the incredible staff of CHOA, and we believed. We believed in her, in her nurses and doctors, and the universe.
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| 6 months old. |
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Fast forward again six months of smiles and tickles, new teeth and new food, fun toys and exploring, teetering and tottering, and trying to keep up with her big sisters, we have a one year old full of life. People are drawn to her, her energy, her smile. There is so much life in this little person and she fought for every ounce of it, twice. There isn't a day that passes I don't look at her and see someone who is thrilled to be here. Maybe some of that is my own projection, maybe some of it is because she is a new soul in a crazy world or maybe she knows something we don't (surprise!)... I'm not sure but I bet the universe does.
Allegro.
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| CAKE!!! Please note: Evelyn's complete look of disapproval over the destroyed cake. |
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| Happy Heart Birthday, little Juliet! |
So, we celebrated Juliet's first birthday with family, friends, and
cake. Oh, yes, there was cake. But we also celebrated the day she was
safe to breathe in this world, the day medical sciences saved our
daughters life, the day those before her led the way to the knowledge to
heal her. We celebrated life and the beauty within! We lit and released a heart shaped paper lantern in to the air. Just one for this year. Next year, we will send two and so forth. With wishes and hopes and dreams.
I know this has been a lengthy post but it was an important one to me. Aside from our story, I would also like to share a few resources you should know which made a huge difference in our SUCCESS story which has been a success in every sense of the word.
RESOURCES:
The Children Hospital of Altanta (CHOA) - We chose this hospital because, in 2012, it is the
5th in the country for heart surgery. An entire floor is dedicated to the hearts of little ones. The staff was made up of the most amazing people. Nurses, residents, doctors, etc. I don't know what their interview process is but it should be a model for all hospitals. We made friends and enjoyed every person there. One of the most incredible places I've ever been. Not to mention, they have
"THE" Dr. Kanter. Claps, bows, more clapping, hugs.
The Ronald McDonald House - Ever wonder where your change from the plexiglass box at Mickey D's goes... it goes here. This has to be one of the most incredible organizations in the country and not many know about it. I know I didn't until we had to use it. The qualifications aren't much, 50 miles travel radius and your child in need of medical help. That's about it. So simple, so helpful, so close to the hospital. I am still blown away by the generosity of this organization. If you ever need a charity to contribute to... this is the one. Hands down. Nothing compares to having a close, safe, clean place to stay while your child is in a CICU with visiting hours. I really can't say enough about the RCDH. Donate, give, run/walk, sponsor, fund-raise, volunteer.
Mended Little Hearts - This is an incredible, informative group which stems from the adult group - Mended Hearts. I found this organization while doing research before Juliet was born. They have a parent-to-parent connect where you can exchange information with other parents who have been in or will be in the same situation as you. Basically, they link you to other parents with similar situations. I have met some wonderful families through this group. It can feel like your the only one in the world receiving news like "your child has a life threatening heart defect" but your not. This group pulls us together and makes scary news feel a little less HUGE. There is nothing more comforting than hearing how well someones child is doing. I promise.
Baby Center - I came across this online group while frantically searching for information on what my unborn daughter had just been diagnosed with -
TGA. I met other families, gained information, and received hope. The world of heart defects grew smaller with these folks, real folks. I knew nothing, absolutely nothing about heart defects, until this last year and half. The kind people over at Baby Center answered my questions, related and most importantly, gave me hope.
If you find yourself here because your child has a heart defect, your in the right place. I can relate, I have resources, and hope to pass them on to you.
If you've read this far, I thank you. This is a subject very close to MY heart and I hope to do more in the future to expand knowledge and resources for babies and children diagnosed with
congenital heart defects. It is not a death sentence nor a hopeless conversation. It is a different path to a glorious life of promise and a bright future full of hugs and kisses.
xoxo Kelly
