Heavy Hearts.

Yikes, I haven't posted since August 15th. I realize most of you probably think I'm neglecting the blog, but I promise I'm not. It's been a busy past few weeks with lots of appointments, soccer practices, soccer games, and coming and going from schools (aka a whole lot of running and gunning). I'm working on a big, lengthy, picture filled post telling you all about the happenings in the past (almost) month. But tonight I come to you asking you for your help.

Your prayers worked miracles for our own little heart warrior. I have zero doubt that our boy pulled through because people the world over were thinking of him, sending him positive energy, and praying hard for him. Tonight I ask you to turn those prayers towards a fellow heart family. Alexis Griffith gave birth to a sweet little HLHS'er named Scarlet Marie on June 15th. She's been through a lot in her life thus far and is fighting harder than any little baby ever should. 

sweet little Scarlet fighting hard (borrowed from her mama's Facebook page)

I am going to share this message with you all from her mama because it explains why they need your prayers and thoughts better than I ever could.

"Tears in our eyes and desperation in our hearts, We need everyones help.. scarlets heart is failing faster then the Drs thought, she cant be taken off the vent and theyve said our best option is too send out a media plea for someone to donate a heart, if you have ANY way to get in touch with the media please let me know im typing up an email to send to all media stations, send me your email and ill forward it to you, please... Im begging on bended knees."

A Facebook page was created to help spread the word about Scarlet's dire condition and need for a heart transplant fast. Please "like" her page and share it with your friends on Facebook. If you would like to read more about this family, please visit their family's blog Waiting for Baby. 

I cannot tell you how much my heart is aching for them. We were so immensely blessed that our little miracle pulled through his struggle and that things happened as they did. No parent should have to go through this. No parent should watch their child struggle to stay alive before they have even had a chance to live life. 

So friends, with a heavy heart tonight I wish you all a happy almost Friday. Please keep this family in your thoughts and prayers. Spread the word if you can so others can keep sweet Scarlet in their prayers as well.

Blessed by Bovine.

I realize the title of this post may be a little strange, but I promise it will make sense in a few minutes. Just bear with me.

Today we celebrated my bright eyed 4-year old's first day of school. He talked all morning long about seeing Mrs. Denney and he kept grabbing random things and sticking them in his backpack to show her. First it was Mr. Potato Head, then it was Woody and Buzz, then it was his "pennies" (aka change he "borrowed" from my purse). I thought he was going to burst at the seams when I told him it was time to finally go. He grabbed his backpack, put it on and literally ran as fast as his little legs could carry him to the garage. Before he got in the car though the sappy mama in me had to take a few pictures because he was just too cute.

acting like he was taking a picture too - he's his mama's boy

waiting to go inside

He was so cute. When I finally got him out of the car he wanted to put his backpack on and he literally dragged all of us hand-in-hand to the doors. As the other kids and their parents starting crowding the doors too my little boy became awfully timid. He was holding onto my leg for dear life. I think the large, hectic crowd got him a little flustered. It was chaotic and noisy to say the least. 

We finally got him inside and found his hook for his belongings. He wanted a kiss and a hug and then he told me to leave, haha. Little stinker. Mrs. Denney was very excited to meet little Lukas. I showed her his incision and talked to her for a minute about the way things happened after his birth and before his and after his operation. She was so glad to hear that things were now okay. I got a little teary eyed recounting it all. It was such a powerful time in my life. It still only feels like yesterday, which made it all the more interesting when I came home and found this.

That's the appointment card from the day we got Lukas' diagnosis; the day that changed our lives forever. I sat for a minute and just gazed at it in my hand. I'll never forget the emotions of that day. I will never forget the moment Dr. Darragh looked me in the eye and told me Lukas had truncus. I grabbed that card and tucked it away in Lukas' memory box as I wiped away a few more tears. 

Now, I told you the title of the post would make sense. If you beared with me its about to make sense. You see, I got this envelope in the mail addressed to Lukas from a company called MedTronics. I opened it and inside was an identification card for Lukas' conduit. It has a model number, a serial number and everything. When I flipped it over this is what I saw: 



The conduit inside Lukas is called a Contegra graft. This Contegra graft just so happens to have a bovine valve in it (aka a cow valve). Does the title make sense? We were blessed with the bovine. Thank goodness for cows! They blessed us with the valve that saved my little boy. Cows are pretty much my heroes now. Just saying.

In any event, I hope you all had a beautiful weekend and hopefully going back to work (or school) wasn't too hard. Happy Monday friends!

P.S. - Please take a moment and pray for the families and individuals afflicted by this weekend's accident at the Indiana State Fair. 5 people lost their lives and dozens were injured when the staging at the Sugarland concert collapsed. Please pray for those who are hospitalized with injuries and pray for those families who lost their loved ones in this terrible, tragic accident.

Out with a Bang.

Summer is drawing to a close for our little family. Riley has his first day of school Monday. Its incredible to think back about all of the changes that have taken place in our family since the last time he walked through the doors of his school. His teacher, the amazing Mrs. Denney, knew what the summer was bringing. She knew about Lukas' heart condition and the fact that he would be having open heart surgery. In fact, his last day of school was a mere 8 days before Lukas' arrival. She knew I was scared, but hopeful. I can't wait to see her Monday and show her Riley's new little brother.

sleepy little brother

Its shaping up to be a busy month around these parts. Not only does Riley start school Monday, but he also has his first soccer practice Wednesday. He's pretty excited, as are we. I ordered his cleats last week and we received them on Monday, which meant that Riley had a permanent smile plastered across his face for the remainder of the day. His first game is on the 27th and I cannot wait!

Buzz Lightyear backpacks the boys picked out for themselves

soccer cleats for my little soccer star

Hayden also starts school on the 30th. Its going to be good for him and I love the school he's going to. He has a "practice" day on the 25th to meet his teacher and his classmates and get him acclimated with his classroom. 

While I'm a little sad that summer break is coming to a close, I know my big boys are going to love being in school. It will also give me some wonderful cuddle time with my little warrior. I'm definitely looking forward to it.

love how you can see Riley looking over him - and yes Riley is obsessed with his Christmas pajamas

Happy Friday friends. I hope you all have an incredible weekend and good luck to those starting school this coming week!

Lazy Days.

Lazy days describes our weekend pretty perfectly. I wasn't feeling overly hot so we pretty much stayed indoors and lounged together. After the hectic past few weeks it was actually a welcome change. I was supposed to go to Chicago with my parents, but due to feeling under the weather I decided against it. Instead I spent some much needed time on the couch just snuggling my littlest love (my bigger loves are not so much into the snuggling anymore - insert sad face). I think we only left the house to get food and visit with my in-laws for a moment.

We even had a visitor today. Jonathan's best friend Cory and his gorgeous little girl dropped in and hung out for awhile today. Riley and Hayden were running around outside like wild men while the adults and Cory's daughter sat, talked, and watched "How to Train Your Dragon." She loved our cats and she was so stinkin' cute with them. Cory said she's going to be a vet someday and by her interaction with Cameron and Chloe (our kitties), I believe it. It was nice to see them and visit with Cory. 

When the boys decided they were done spraying one another with the hose they brought their soaking wet bodies to the door and wanted to take a shower. Yes, we do showers around the Corwin household because they are so much easier and way less messy than a bath (aka no soaking wet floor). Hayden took a nap while Riley meandered around and ate a chocolate chip cookie. We had a 10-minute or so thunderstorm blow through and afterward we had some insanely bright sunshine coming through the windows. That means mama couldn't resist snatching up her camera and taking some photos of my big cookie faced boy. He's such a ham.

love that cookie faced boy

So even though it was a bit of a lazy weekend, it was perfect. Sometimes that down time is a much needed and welcome change from the day to day run and gun that we have become accustomed to. It was a perfect opportunity to sit back and marvel at all we have to be thankful for and all the miracles surrounding us. We got to love on our boys and take a minute to just be a normal family of five. And it rocked. We are so blessed in so many ways its unreal. Its been a tumultuous year for our family. I won't lie. Its been the wildest roller coaster I've ever ridden, but its been worth every second. I think we came out better and stronger as a family because of our miracle. We appreciate every second of the smiles and laughter (and sometimes the screams) that fill our household on a daily basis. Its a beautiful reminder of how different things could have been and how lucky we are they aren't. If this journey has taught us anything its to live for the good days and put the bad behind us. I'm not naive in thinking that bad days won't be in our future. I know they will be. But for now we live in the present. Things are good and that's just the way I like it. Its a good life; and we'll take it.

I hope you all had a beautiful, fulfilling weekend! I'm not going to lie, I'm a little bummed its now technically Monday. Can they make weekends last three days instead of two. Wouldn't that be awesome?

Heart of a Fighter.

That's what our boy has. The heart of a fighter. Our boy went for his 2 month check up today (p.s. - can you believe he's two months old already?) and it went so good. Lukas weighed in at 7lbs 8oz on July 20th at his one month post-op check up. Today he was....are you ready for it? 9lbs 5.5oz!!! That's a huge jump for him. I mean huge. Sweet Dr. McAteer was blown away by him. We talked about his incision revision and its healing progress and then we talked about the Synagis injections to protect Lukas from RVS. Due to his congential heart disease, Lukas is a candidate for them. This is a big deal for a number of reasons, but most importantly because he is a candidate our insurance will pay for the injections each month. He will receive 1 dose every month during RSV season. Without coverage, these injections can run $1500-$2500 per dose. Not for all of them. That's the cost for one dosage for one month. It's crazy. So Dr. McAteer got that paperwork started so that by the time RSV season rolls around we can get him dosed and (hopefully) protected. 

The downside of today's appointment was the start of Lukas' vaccination schedule. Since he was a heart baby and was being monitored in the NICU prior to heart surgery they waited to give his first dose of the Hep B vaccine. Just to avoid any potential reactions that could create additional stress. That kind of thing. In any event, Dr. Turrentine wanted Lukas' vaccinations to be started at 2 months. So today was the day and it was literally the saddest thing ever. You see Lukas has this incredibly sweet, cute, pitiful little cry where you just can't help but go "awww." He received 3 vaccinations and an oral dose for Rotavirus. The action needle sticks were so sad. He got the big pouty lip and did those silent cries where they turn red and make the crying face, but no actual sound comes out. Yeah, those cries accompanied by baby tears. Someone please rip my heart out now. I immediately scooped my sweet boy up afterward and just held him tight and he quieted right down. Such a little warrior. He amazes me. With everything he's endured he is still the sweetest, gentlest, most incredible little boy. He's got the heart of a fighter through and through.

And for good measure, here's my little man (with his "man sized band-aid as Dr. Turrentine calls them) putting his dukes up UFC style. I think he was trying to tell me he'd beat that nurse up if she came near him with those needles. Guess she lucked out =)

the heart of a fighter - taken on mommy's cell phone

 Happy almost weekend friends! 

P.S. - my sweet friend Kristine is hosting an online auction via Facebook for Operation Healing Hearts, which helps fund life saving operations in Iraq for children suffering from congenital heart defects. These little guys and dolls need all the support in the world just to survive. If you'd like to help this cause hop on Facebook and "like" the Have a Heart: Auction for Operation Healing Hearts page and bid on some of the items donated (our family donated a few items as well to support this awesome cause). Bidding begins tomorrow and ends August 8th!

It's in the Bag.

So, I have been terrible and neglecting the blog for about two weeks. I promise there is good reason, but I figured maybe it was time for an update. So here we go.

As you remember Lukas had his incision "revised" about two weeks ago because of his reaction to the dissolvable sutures under his skin from his operation on June 20th. It was a nasty looking thing at first, but day by day we saw it improving drastically. We saw Dr. Turrentine and his nurse practitioner on July 27th for an incision check. He told me it would be a pretty informal thing and that he just wanted to make sure it was healing properly. He said to just go up to the Heart Center around 10am and ask for him to be paged. When the day rolled around we made our way up to the Heart Center and I think the unit secretary thought I was a nutcase asking for Dr. Turrentine to be paged on my behalf. But she replied with my request and a few minutes later the man himself was on the phone. He asked the unit secretary to call his nurse practitioner and have her see him as well, as he was still in his office preparing for his morning case in the operating room.. So she paged her and a few moments later we were greeted by the NP. All of the rooms in the Heart Center were full so she took us over to the cath lab pre/post-operative rooms and got Lukas a little crib so she could examine him. She took a gander and said it was looking much improved. There was one tiny spot that she fiddled with, which got Lukas good and worked up. She handed him back over and I fed him to calm him down. He finally fell asleep and got settled in when Dr. Turrentine came in. He pulled his shirt down and said he was very happy with the progress of the incision. He said it was so angry before that he just wanted to make sure removing the dissolvable sutures would do the trick. And it did, thank goodness.

In the meantime we have been working on some home projects.  You see, I am creating a medical binder to keep in our car for Lukas that has all of his medical history, his diagnosis, contact information for Jonathan and I, information on his current medication and dosages, a copy of our insurance card, and his doctor's contact information among other things. Just in case we were ever in an accident and I was unable to communicate this information everything would be right there for them. And its just a good thing to have on hand. I wanted something to keep the binder in and a little place to keep odds and ends like extra diapers, wipes, outfits, etc. (other than the diaper bag of course). This way we could simply give the bag to whomever is watching him when I get over my phobia of letting other people babysit him, but we aren't there just yet. Back to the point now...so to address that need I bought a cheap-o $2 large canvas tote bag at Michael's and made this:

 

I love it! Its so perfect and its nice and roomy. I love the vintage heart diagram too. Very fitting for my little heart warrior, right? I've seen a dozen or so tutorials for transferring the image onto the fabric and I was mighty nervous that it would bleed or look terrible, but I think it turned out pretty good. What do you all think? I'm a sucker for a good tote bag and this just might be my favorite yet!


Still working on the CHD awareness calendar. I just have to say I received so many photos and stories of these amazing kiddos and its touched my heart so much. These kids are so incredibly amazing and this has been such an heart warming project to to work on. These little ones deserve so much and I can't wait to share their beautiful faces with everyone. Their parents have been so amazing in allowing me to do this project as well. So to all those heart mamas who sent me pictures of their little warriors - THANK YOU! Stay tuned for the finished product. I'm super excited about it =)


Happy Tuesday friends!

Always Amazing.

Amazing is never an adjective I imagined I would be using to describe this journey, yet here I am. This road has been filled with so many ups and downs. Its filled me with pride, understanding, gratitude, and compassion that I have never before known or experienced in my lifetime. In short it's been, well amazing.

 There is something about being the parent to a baby with a heart defect that has left me forever changed. I've had the opportunity to witness struggle and heartbreak and the miracles that lie on the other side. That is what Lukas is. A miracle. A living, breathing, beautiful miracle right here in my arms. In his seven weeks of life he has faced challenges and obstacles most will never know in a lifetime. Despite it all, he's perfect. With clothes on you would never know what he had been through. Just over a month ago he underwent open heart surgery, but unless you saw his incision you probably wouldn't believe it. Its a fact many folks we encounter are shocked to hear. We beam with pride everyday that we are granted this amazing opportunity to be his parents. Its really miraculous. I can't even describe the feeling in words. 

Yesterday was our one month post-op visit with Dr. Turrentine. That pride I explained kicked into high gear when he walked into the room. He had two x-rays in his hand; one from the day after his operation and one from yesterday (he had a chest x-ray prior to seeing Dr. T). He told me I needed to see these. At first I was a bit worried they weren't good. I couldn't have been more wrong. In fact, they were excellent. According to Dr. Turrentine it was one the best post-operative x-rays he had seen. He told me to take the pictures home and show them off, because they were just that awesome.

what a marked difference! how is that for awesome?

When Lukas went in for his weights and measures, Dr. T's nurse noticed he had some bubbly scabs on his incision. She soaked them in peroxide while we waited on Dr. Turrentine and when he came into the room he knew immediately what to do. Lukas had a reaction to the dissolvable stitches that were under his skin. This meant he needed to have his incision "revised" a little. Good in the long run, not too good at the time. Dr. Turrentine had to pull the scabs away, pull the sutures underneath, and cut them. It was a bloody mess that left us with one poor, upset little boy. So we have to see him again next week just to check on its healing progress and make sure its up to snuff with Dr. Turrentine's expectations. In the meantime he have to clean it with alcohol, coat it with bacitracin, and dress it twice a day. 

I know you all haven't really had the opportunity to really see Lukas minus tubes and wires and without the post-surgery swelling and bloat. So in the spirit of sharing what a miracle he really is, its time to really "present" him to the world. Ladies and gentleman, I give you the amazing Lukas Robert Corwin.

 

So glad you all get to officially "meet" Lukas now! About time, right? =) I know, I'm a slacker (whomp whomp). 

Happy almost weekend friends! 

P.S. - because there is such a need for awareness and to spread the word about CHDs and their effects in our little ones, I am working on creating a calendar showcasing some of these little miracles. It will show so many of these little beauties and what extraordinary obstacles they have overcome. Every one of these children are miracles. Every single one. I'll let you know when its complete!  All the proceeds of the calendar will go towards families of little ones with CHDs and to increase awareness. I'm very proud of this endeavor and hope you will join me in celebrating each of these miracles right here on Earth! Details to come soon, promise!