Miracle Baby indeed.
He's everything I'd ever hoped or dreamed of, actually he's more, a lot more.
Nothing can test the depths of your heart like having your own child can. Add on a surprise diagnosis of Marfan Syndrome with a very serious heart condition that will never get better, your heart can start to spiral into a black abyss of fear and sadness. A sadness I had never known before.
Many of you have heard me speak of my feelings and emotions of Rocco's birth and diagnosis. Many of you follow his doctor updates via here or Facebook. We appreciate every second you spend thinking of our little miracle. Your love and kindness towards us and Rocco, means the world!
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I'm here to introduce Rocco to a beautiful network of loving mothers and shop owners on Instagram (my new obsession). Tink and Key was so generous to send Rocco a miracle baby tee in celebration of the miracle that he is, and truly all children are.
Rocco truly blessed us the day he was born. He didn't fit the cookie cutter mold of the "perfect" baby boy. He was different, even when no one else mentioned it, I knew he was different. I didn't know in that moment that it was going to be the scariest few days of my life to follow.
Quickly we learned that Rocco may potentially have Marfan Syndrome based on the sheer length of his fingers, toes, feet, arms, and legs upon birth. Then they heard a heart murmur. Still holding on to optimism, I said to myself, "Oh no big deal really, my mother has always had a heart murmur." I was so naive to what a heart murmur truly can signify to such a small little guy. In all honesty my mind was disturbed by vanity of what people may think of my son with his "spider-like" fingers and long feet, not what a heart murmur could behold. My fears were misdirected, so when we met with a cardiologist to discuss Rocco's heart, I was hit with a ton of bricks---to the face.
The doctor discussed in detail what was going on with Rocco's heart--that he has a bicuspid valve, the weak connective tissue of his heart has caused the aortic root to dilate already one and half times larger than a normal newborns aortic root, his valve was floppy, he has mitral valve prolapse and leakage. He told us the progression of his neonatal marfan syndrome was rapid and that his heart would only worsen quickly. I asked the doctor if he had ever seen another case like Rocco's before. He said yes that he personally knew of one other baby that was born with the neonatal version of marfan syndrome like our son. He then told us that he could potentially only live 6 months as the one other case he knew of only lived to be 6 months of age. The floor dropped from under me, my heart was in my throat, my stomach twisted into knots. What on earth were we going to do? How do you move on from that moment? Frozen in time. Only our love for our little miracle would prove to be the force that was necessary to power through those moments.
Fast forward to arriving home with our baby boy. It wasn't easy but just getting to leave the NICU was a small victory to us. And then came the small emotional hurdles around the house, such as seeing his 12 month clothing we had gotten at the baby shower, or even the little elf costume I had purchased for him when we first found out we were having a boy the winter to prior, his baby album, the 12 month photo frame. The 12 month photo frame is what hit me the hardest. How can I only semi fill up this frame? It was in that dark moment of tears and sadness where I started to live in the moment of now. Every day would be a victory for us and for him. It was then I decided to make every hour, day, week, month special. I chose to pick up my camera and started documenting his life. I did a big monthly photo shoot of him for his frame. Somewhere along the way, I started to relax and push fear aside. I didn't have enough room for fear to live in my life as much as I once did. Rocco continued to allow me to fill up an entire years worth of that frame. We are still going strong at 16 months. He is my miracle. Everything and more.
I'm happy to know that his first cardiologist maybe was misinformed of the complexities of Marfan Syndrome, that no two cases are alike (thankfully!). There has been a learning curve through it all that has been painful from time to time. Yes, his heart is still affected, it's still dilating more than we would like for it to, his valves are beginning to leak more than before, he's maxed out on his medications, and yet growth continues. There will come a day that his first open heart surgery will be necessary. It's a bridge I'm not ready to cross but I know when the water gets too high and choppy-- that the bridge will be sturdy enough to bear our load. Rocco will continue to carve his own path in life. All I know is that it has been so beautiful to watch him grow, he amazes me each and every day. He is our miracle baby.
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Tink and Key is a beautiful faith based company that encourages us to LOVE through the eyes of all of our children. They look forward to sharing encouraging words through their collection of shirts that hold special meaning to their very own family. These words are printed on American Apparel clothing (sweat shop free) using water based inks (kid friendly). This specific raglan "Miracle Baby" tee is soft, comfortable and comes in fun colors - neon pink, neon blue, and neon yellow! Tink and Key even offers "Zipper Club Member" tees for the heart surgery warriors and "Miracle Mama" tees and tanks!
Please click here to follow them on instagram: @tinkandkey
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Now for some photos of my miracle baby rocking his tee!
Always on the move. Never in one spot long enough to get a non blurry photo!
Walking and squatting are even victories in this household, as he has had low muscle tone in his legs since birth.
The newest victory is walking up and down steps by himself. He holds on to the railing just like he has been taught. Such a big boy!
Always finding a reason to show off his belly!
Thank you so very much for reading our "Miracle Baby" story. Thank you Tink and Key for the compassion you show to so many. Your love is appreciated so much!
To read more about Rocco's birth day click here.
**As an update of his most recent cardiologist appointment in August; Rocco's aortic root has continued to grow and now his aortic valve has begun to leak a tiny amount. Not the news we wanted to hear by any means but I'm hoping that the leaking remains only a trace amount for a long time. Positive thinking equals positive results, right?
xoxo - Christy
