Miracle Baby

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

Rebels & Rascals: A woman with a heart of GOLD

I don't even know where to begin with this post but to say that my new found obsession with Instagram over the past two months has brought an angel into our lives. One of the first companies that Rocco began brand repping for was Rebels & Rascals. The owner of Rebels & Rascals, Erica, has always been a sweetheart to us from the beginning, even when Rocco didn't necessarily "win" the chance at being a brand rep based on the voting system that was in place for her Summer Brand Rep search in early July.  (I am no good at getting votes, too much pressure!)  Erica reached out to me and offered him the chance to be brand rep for their fall line of products instead! We happily obliged! 

Then a few weeks passed by and we get another message from Erica, she had somehow stumbled upon our blog here and read Rocco's birth story. She said she was in tears and wanted to immediately send Rocco the T-shirts and welcome him to her team of reps.  We were so excited that first someone actually did come over from Instagram to look through the blog I have put so much personal work into and that he would be repping for another awesome brand of clothing!  They sent him a large package of t'shirts to begin wearing and taking photos in and sharing to our followers on Instagram. 

Now about another month has passed and Erica shares a little bit of personal information about herself to her Instagram followers.  She is a mother of 4 beautiful children. But something else she shared I never saw coming. She says she is fighting a battle against Breast Cancer, and her form of the cancer is called HER2+  a very aggressive type of cancer. Her doctors have changed her time left on earth from 6 months to 3 months to the most recent visit in which they said less than 30 days. I was so devastated hearing her news. I struggle to understand why this is happening to such a beautiful person with 4 beautiful children that may be left motherless and with no other family around for support.  

A few days pass from her heartbreaking news but I can't get her off of my mind.  I then make a post on Instagram about Erica's heartbreaking story and the struggles she must feel every day and about a small struggle we faced that day about Rocco's medicine; how upset and panicked I felt because his insurance wouldn't pay for his medicine. This medicine is necessary and we have to get it refilled every 2 weeks. I am fearful of what may happen if Rocco even misses one dose, we have been warned as to what can happen. His current bottle of medicine was set to expire that evening but I didn't have any new medicine for the next day.  After a few panicked screams to the pharmacist (poor guy) I beg him to make the medicine and I would pay out of pocket, I didn't care what it cost, please just make his medicine.  He hesitantly obliged and we got what we needed that evening. Thank goodness! Erica messaged me with worry throughout the evening, I assured her we got what we needed as soon as we picked it up. 

Two days pass, Erica messages me. She wants to help Rocco with his medical expenses by selling all of her Cowboy & Indian tees she has left on hand and put the money in a fund for us to use when we need to cover a medical expense that insurance will not cover for Rocco. I first told her that I wouldn't want to take away anything from herself or her children. I also explained that I have never asked for any help because quite honestly I'm fearful that if I did ask than possibly Rocco's health would take a turn for the worst as if I'm asking for the universe to make that happen. Its weird but it's just my thoughts. There may be a day when we do need help, maybe when he is ready for open heart surgery - god hoping that it is still years away. But I just could never ask right now. Erica went on to pretty much insist on helping Rocco out, she strongly feels that we have crossed paths for a reason. That God put him in her life for a reason. 

 Here is a photo of Rocco wearing R&R's Cowboy and Indian tee in black

I feel just the opposite of Erica, I feel like God put her in our path for a reason. I am just blown away by her generosity, love, her selfless will to support another human being. I start to cry when I think about her. The struggles she must face every day. To undergo more treatment and be so sick and weak to even enjoy her children or to go about her way and keep the faith that she will be ok. Someone that has so much on her own plate and still wants to help us! She is god sent. She breaks my heart and makes it sing all at the same time. I want to be a better person because of her. I want to know how I can help HER and HER CHILDREN. 

Maybe one day soon what I can do for Erica will come into light, something to show her all the love we feel for her as she has shown for us. All I want is for this brave, kind-hearted, loving woman is to be around for her four young children. 

We love you so much mama and thank you for being so supportive and caring to Rocco. You are a gift in our lives. 

Below are the tees that she is donating on behalf of Rocco, 

the cowboy & indian tee specifically. They are all only $12!

Here are a few more shots of Rocco in his black Cowboy & Indian tee

Click the above link to order your tee! Only $12!

Here are a few photos of Rocco wearing the gray Cowboy & Indian tee

Click the above link to order your tee!  Only $12!

We have promised Erica that we would spread the word.  Rocco is not the only little child that she is donating her proceeds to.  She is donating the proceeds of three other tee sales to help other children in need.  

Below are some of the other tees she is selling to help children in need. 

Giving 100% of her profits to them. 

 The Anchor tee #nevergiveup #presson (also available in gray and baseball tee style)

 The Heart Grenade tee (also available in white and baseball style)

 The Play Hard tee (also available in gray and baseball tee style)

Here is her website again if you know of a child that would love to have a great tee for a great cause! Support a woman with a heart of GOLD giving back to children when she herself is fighting a battle of her own.

Here is a link to her instagram if you would like to find out who else the tee sales are helping!  instagram.com/rebelsandrascalsapparel

xoxo - Christy

Photo Update for Rocco

I know it's been some time since you've seen a photo update on the boy.  These were all taken in July! If you follow me on Instagram then you have seen probably all of these already but I know many of you are not on Instagram. So here goes...
He's becoming quite the little model. ;)

Carpe Diem

 I am boy here me roar!

Enjoying himself in Baltimore after the Marfan Conference ended. 

That was an amazing experience to be apart of to learn so much more of how to cope with him having marfan syndrome.  It was so awesome getting to speak with heart surgeon Duke Cameron at Johns Hopkins about my questions and concerns. He was so kind and answered every question I could come up with in a short amount of time. Truly an amazing surgeon, my only hope is that when the day arrives for Rocco to have heart surgery, he is the gentleman that performs it. I'm hoping that day is still aways down the road. 

Then there was the day he wanted to be a king...

King of the Felton corn ;) 

Davey Crockett

 Goob

 Loves his airplane. vroom vroom

xoxo - Christy