Remembering the Heart Angel's

So many things have happened since my last blog post, that I've been meaning and wanting to blog about.... and I know that I promised that I would be better at blogging.... but honestly.... I've just been too tired........ both physically and mentally.  I've been really saddened by all of the recent losses we have experienced in the CHD community. With Dylan's Norwood coming up really soon, it's gotten me really worried and scared, and sad.  I want to take the time to talk about and to remember two very special little Angels. There are a lot of families and stories that I follow within this new found heart community of mine in the last few months before Dylan was born, and a few that I had grown an attachment too, who have since then earned their angel wings.

One of them was precious little Travis DiCarlo.  Travis was especially special to me because he lived so close to me, he went to the same hospital as Dylan, he had the same Doctors, and the same Surgeon as Dylan.  I was hoping to meet little Travis one day, I actually wanted to meet Travis before Dylan was born, but me being put on bed rest for almost my whole pregnancy made that one impossible.  Travis had the most beautiful contagious smile, there was no way I could look at his pictures without smiling ( Still can't ). He was an amazing little boy, and such a strong fighter. Travis lost his battle with HLHS on February 19th, 2011. Joe and I just recently had the pleasure of meeting Travis' mom. We met for dinner at Islands, and I quickly realized where Travis had gotten all his strength.  I am quickly realizing how much strength it takes to be a mother, and how much more strength it takes to be a mother of a "heart baby"....... and the night I met Nicole, I realized how heartbreakingly strong you need to be as a grieving mother of an angel baby. You have no choice but to be strong, you have no choice but to try and move forward, you have no choice but to try and live when a piece of your heart is missing......... and that's probably the hardest part..... you have no choice. Nobody chooses to have a child who is "sick" ..... nobody chooses to lose their child. It's not fair.  Nicole didn't have to meet us, she didn't have to take time out of her grieving to show us support, but she did. Nicole wanted to meet us, to tell us that with everything they went through, and are continuing to go through, it was all worth it.  I needed to hear that.  I am so scared of losing Dylan all of the time, that sometimes I forget to just take it all in, to just enjoy the NOW and not focus on all of the what if's and the possible bad outcomes.  Nicole, I know that you don't think that you guys are strong, that you're just going on with your lives, because you have no other choice but too ......... but I want you to know how much your continued support of Dylan and my family means to me. Your willingness to still be a part of this heart community, and to continue to show support of the Heart warriors through your own grieving process, show's just how strong you really are. I cant express to you how much Travis and your family has touched my heart. You are an amazing woman, and I'm so glad that I got a chance to meet you! <3

Nicole, Joe, and I at Island's <3

Dylan wearing the jammies that Nicole bought for him <3

Sweet Little Travis <3

The other Heart Angel that was special to me is Baby Olivia.  I haven't had the chance to meet Olivia's mommy, as I have Travis', but I had followed Olivia from the beginning. Olivia always brought a smile to my face. Her mommy always dressed her in the cutest clothes and I would look forward to her posting them for everybody to see her cuteness. Katie and I never really talked, but I had always felt like I knew her. I'm not sure why, maybe it was all of the post's that she would post on FB and it sounding like things I would say, or ways that I would react in certain situations.... maybe it was the whole tattoo/piercing thing that we have in common :)  Olivia earned her Angel wings on April 24th.  I found out while I was at the hospital with Dylan. I checked FB on my phone to get an update on Olivia because Katie had posted that Olivia wasn't doing to well, and when I read that she was now and Angel, I just started crying........ and you better believe that I held onto my baby boy a little bit tighter.  Katie, I want you to know how much Olivia had touched my heart, I never had the chance to meet the little diva..... but she will always be in my heart and in my thoughts <3

Little Miss Diva Olivia <3

Those two very special angel's are sadly just two of the many that have lost their battles recently. It's sad to know that so many of these precious special little fighters lose their battles without anybody knowing about it. I knew nothing of this world until I was thrown into it. The reality of this CHD World is horrible. Congenital Heart Defects are the #1 cause of birth defect related deaths. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. 4-8% born with CHD have Hypoplastic Left Heart Syndrome.  It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications, which is why I vow to do what I can to help raise the awareness. We can't let our fighters, and our Angel Diva's and Warriors go unnoticed.  It's sad, but it's true that you don't really realize or know about things until it's happened to your family directly or to somebody that you know ......... but then by that time, it's too late. Even if your family is not directly affected by CHD, please help spread the awareness of it. That is the only way that CHD can get the recognition for the horrible thing that it is, and get the funding for the research that it needs. <3

For the first month and a half of Dylan's life, he was the only baby in the NICU with his specific heart defect (HLHS) until last week when he got a neighbor, Jaycen, who also has HLHS.  Jaycen's mommy and daddy didn't know about his heart until AFTER he was born, as terrifying and horrible as it was to find out about Dylan's heart before he was born, I can't imagine having to find out after he was born and being thrown into this CHD world without having any time to prepare.  Baby Jaycen had his first open heart surgery today, and his mommy say's he's doing well. Please keep Jaycen and his family in your thoughts and prayers.

I'll leave you with some pictures of my precious little baby boy who continues to fight for his life. Dylan is 1 kilo away from his goal weight, so his first Open Heart Surgery is on the horizon. Depending on the schedule, it looks like he'll be having his Norwood either next week or the week after that. Please keep him in your thoughts <3

He knows he's handsome!  He can't get enough of himself <3

:-)  This pretty much sums up how Dylan feels when anybody tries to take his wubbanub or change his diaper <3

ALWAYS has such a concerned/confused/grumpy old man face <3

I love you baby boy!! Mommy and Daddy are fighting right along side you! <3