Thursday, September 29, 2011

Rainy Days and Thursdays.

It was rainy yesterday. And cold. It made for a nice day of sitting inside and drinking hot chocolate with my boys. Riley was supposed to have soccer practice, but it was canceled due to standing water on the fields. The NYSL wanted to "preserve" the integrity of the fields, so they wouldn't permit players to come to the fields with their cleats on to practice. Today is a little nicer, thank goodness. At least its sunny and its supposed to be the warmest day for the remainder of the week. I tell you what, all of this rain could have come over the summer when the temperatures were sweltering and the grass was dying. But I digress.

hiding under the bed playing with Chloe (our cat)
We are t-minus 1 day from surgery now. We should receive a call from the OR sometime today letting us know what time to be there.  From what we understand the time slots go by age. Basically, the younger the child the earlier they get in. So hopefully Hayden won't have to wait too long in the morning since he won't be able to eat or drink after midnight. While we are at Riley, we are planning on making a quick trip up to the NICU to visit with some of our favorite nurses who are going to be working. I can't wait for them to see how much Lukas has grown in the three months since his operation (holy cow - can you believe that was really 3 months ago already?). Time sure does fly.

So my task for the day is to go and get Hayden some comfy pajamas to wear to and from the hospital. Not that he doesn't have a million pairs, but we wanted to get him something extra comfortable since he will come right home and lay down. We don't want him being uncomfortable for the ride home and we don't want to have to pester him when we get here to put "comfy" clothes on. Maybe some Spiderman or Star Wars pajamas - something that will maybe cheer him up afterwards cause I'm sure he won't be a happy camper. 

Happy Thursday friends!  

P.S. - Baby Scarlet is doing wonderful and they are hopeful that she will be extubated tomorrow! That's just wonderful! She will be able to be discharged in two weeks! Go Scarlet!! Aren't these sweet little heart warriors just amazing?
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Tuesday, September 27, 2011

Tuesday Quicky

In the spirit of sharing I thought I'd do a quick Lukas spam post on this rainy, cold Tuesday. I've not been overly diligent about sharing pictures of the boy for whom this blog was created, so here's a few of my faves (via Instagram - I love that app). Enjoy. Photobucket
Do you remember the shoes in the middle there? Those are just one pair of the teeny, tiny soft soled crib shoes I made for my boy before he came into the world. I'm planning on making more since the weather is cooling off and its the perfect time to sport little shoes rather than just socks. 

Happy Tuesday!

P.S. - Baby Scarlet made it through her heart transplant yesterday and she's doing just great! Thank you for all your prayers for her!

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Monday, September 26, 2011

Lazy Days of Fall.

As Friday's surgery date draws closer, I find myself tiding up and preparing. We are stocking up on some supplies (aka lots of fluids we know Hayden loves to drink) and some necessities so that we don't have to venture out over the weekend. This weekend was not much different. We pretty much hunkered inside and steered clear of the rainy coolness of the fall weather here in Indy.

Staying indoors opened Pandora's box for my brain though, so I guess the weekend wasn't totally a bust. I painted my nails a gray shade since I have a newfound love for all things gray recently. The shade is called "Concrete Catwalk." Pretty catchy, huh?

Let's see, what else. Jonathan and I also talked about little "chores" the boys could do around the house. Just things we want them to get used to doing, like getting dressed, brushing their teeth, and picking up their toys. We also decided to give Riley and Hayden each an extra "special" job. Riley gets to feed the cats and Hayden gets to help us make the beds. To drum up their excitement over doing these things, I created a little chore chart for them. I wanted it to be kiddo friendly, so I created four simple tasks (with pictures) that they can check off each day when they've done their chore.
It was a big hit! The boys loved it and they ran around like mad trying to get their "chores" done so that they could check off their little circle for the evening. To make it easy I printed them on some cardstock and stuck them in 8.5"x11" frames that I happened to have laying around. That way the boys can make their check marks with a dry erase marker and we can wipe it off and start again fresh the next week. It's working out great so far. Now I just need to decide where to hang them. Any suggestions? I thought about maybe putting some magnetic strips on the back of the frames and hanging them on the refrigerator or using some of those 3M Command Strips to hang them on the wall in the laundry room. Decisions, decisions.


I'm also working on a little game for each of the boys. Something little to carry around in the car with us for when we need something to keep us preoccupied. I'll post pictures when I'm done. It's a memory game, but it also will help them remember their colors too. I'm also making them some printables that I am going to laminate to help them write their name. Basically it will be traceable, but with it being laminated we will be able to work on it over and over again without going through a million sheets of paper.

How about some Lukas news? Well, he's doing just great. He's getting so big and he's just so handsome. He has the widest, biggest smile and a giggle that could absolutely, positively melt your heart. He's such a little miracle and we love him so, so much. Riley has even finally started wanting to be near him. He will kiss him on the forehead and tickle his feet. And his baby voice that he talks to him in. Oh. My. Gosh. Swoon. I'll try to record it sometime so you all can hear it. It's precious. Just precious.

a little happy, smiley boy spam for you (please excuse the blurriness - he was moving and it was on my phone)
Well, happy Monday friends. Hope it's been a good one.

P.S. - For those of you wanting an update on baby Scarlet, her family received the call last evening. She is getting her new heart and a new chance at life. Scarlet is in surgery right now, so please pray for her and her family. Also, please take a moment to say a few kind words for the donor family who is going through grief today I cannot even imagine. Keep them both in your thoughts today friends.
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Friday, September 23, 2011

Run Fun and Operation.

Everyone have a good weekend? I know I sure did. I mentioned a couple posts back that I was given the immense honor of photographing the 33rd Annual Dick Lugar Community Run, Walk, and Health Fair this past Saturday. It went beautiful. The weather was perfect and the event went off without a hitch. I was honored to meet the new President of Butler University, James Danko, and his wife, Bethanie, who were just incredibly kind people. She talked with me at great length about Lukas' journey and we talked about a new endeavor that I am getting underway. She was so incredible and offered her assistance in any way possible. That's huge. Beyond huge. They are both so lovely and we are so honored to have them at Butler (I'm a huge Butler fan because its my big brother's alma mater). 

The run itself is hosted every year on the Butler University campus. If you haven't been there, you are missing out. Its such a beautiful campus. Year after year my appreciation for that campus has never been lost. The Health Fair and award ceremony was housed in Butler's Health and Recreation Complex, which is a great facility for prompting health and wellness for Butler students and staff. It was just an incredible day and I was so lucky to have been able to share it with such incredible people. Anywho, here are a few shots from the day that I consider to be my favorites.

the first youngster to cross the finish line

love this photo
crossing the finish line
starting the races (new Butler University President James Danko is on the right)
So that's the good news. It was a blast and I can't wait for some more of the exciting things I have coming up! More on that later. Unfortunately, I also have a bit of bad news to share. That's where the second part of the title comes in. More surgery, different child (aka Hayden). When he went to his 2.5 year check up with our pediatrician, Dr. McAteer asked if I had any concerns. Not thinking anything of it I made a joke about how Hayden has a man snore. As in, its incredibly loud - like a grown man. With that in mind, she looked in his throat and shook her head in agreeance with what she knew she would find. His tonsils were enlarged. So enlarged in fact that she could not even see the back of his throat. She made an appointment with an ENT down at Riley and come Tuesday we got the word. Hayden needs to have his tonsils and adenoids removed, tubes placed, and some excessive tissue trimmed from his voice box. During Dr. Matt's (the ENT) assessment, he noted that Hayden's eardrums were not rebounding because he was retaining fluid behind them. He had a hearing test done and let's just say the results were less than stellar, but Dr. Matt is pretty confident that will improve once the fluid is drained and the tubes are placed. 

I won't lie, I'm not looking forward to it at all. He's such a happy-go-lucky boy all the time and the thought of him being in pain saddens me terribly. And likely his sweet, raspy man voice will be gone after the operation. I've always adored that raspy voice, but it turns out all along it was a symptom of all these other things. That's going to take some getting used to. This is all slated to take place next Friday, the 30th. I don't know the times yet, as the OR will call me the night before with the time and his instructions. I'll be sure to keep you all posted. Here's to hoping things go smoothly and this is the last procedure for our little gang for a while.

Happy weekend friends. Anyone doing anything fun?
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Wednesday, September 14, 2011

From the Heart.

A few days ago I saw a message in a heart parents group I am a part of. A lovely woman is who is expecting her first heart baby within a few weeks reached out to ask for advice on the road ahead. It was a really thought provoking question. I've thought about this very thing many times, but its never something I have really sat down and genuinely collected my thoughts on. I thought back to when I first found out about Lukas' heart defect; the advice, guidance, and support I received from others. From my family, friends, doctors, and even complete strangers. I thought back on the moments that struck me the deepest and the actions that defined our path. I looked back on our stay in the hospital and things that I knew I should have done differently. I searched for words and phrases that really struck a cord with me.

What I came up with was this. The CHD journey is not something you can really sugar coat. Its raw, its deep, and it affects the very core of you. Its impossible to look a heart parent in the eye and tell them that this journey is going to be easy because truthfully, its not. Its not easy at all, but it is worth it. There are tough moments. There are times you become so numb you wonder if you can keep going. You wonder if you have the strength and perseverance to make it through this. Rest assured that you do. When tough moments surface, you somehow find that strength. You find that will deep in your bones that makes you want to fight until the very end. You draw strength from wanting your little one to get better, to come home, and to live a vibrant life that there is nothing you won't do to see that goal accomplished. 

Its hard watching your little one struggle. Its devastating to stand by and know you are helpless to do anything to stop it other than being there to comfort and soothe them in their time of need. As a parent, you never want your children to suffer. You never want them to be scared and you never want them to endure hard times. This was probably the most striking lesson for me as a new heart parent myself. As Lukas declined before his operation, I had to stand by knowing everything was out of my hands. I could cry and I could plead with his doctors and surgeons to help him get better. I could plead with God and I could be there to hold him, touch him, kiss him, and whisper in his ear, but beyond that I was powerless. Its one of the hardest, deepest cutting feelings in this world. In these situations you have to recognize your own limits. I tried to stay awake 24/7 to be by Lukas' bedside. I somehow thought that with me being there and wearing my own body down that I was making a difference. I wasn't. I cried hysterically the first time the NICU staff convinced me to leave and get some rest. I had nurses and doctors constantly telling me that I needed to take care of myself too if I wanted to be there and be strong for him. They were 100% right. At the time I felt like I was being picked on because I wanted to be there with my baby. Looking back now, I should have absorbed that advice sooner. It wasn't until I was near the breaking point of my body that I finally heeded their words of wisdom. While you always want to be there and you always want to remain vigil of your little one, you need to take care of yourself too. Lukas' condition wasn't going to be any better or worse whether I was there or not. I spent every moment I could with him, but I had to sleep too. If I wanted my mind to be sharp and clear, I needed to sleep. I needed to eat. And occasionally I needed to leave the confines of his hospital room, even if only for a few moments. It clears your head and opens your perspective. Sometimes that very element is needed on this journey.

If surgery is required, especially open heart surgery, rest assured that first time you see them its going to take your breath away. No matter how many pictures you see of other children or how prepared you think you are, nothing prepares you for that being your child. Our beloved pediatric cardiologist, Dr. Farrell, echoed that same sentiment before Lukas' arrival. It is good to feel prepared. Its good to know what to expect because it does lessen that blow to some extent. If you know they are going to be hooked up to lots of machines and have lots of IV lines, tubes, and monitors, that knife cuts just a little less deep. Nonetheless, it is still your child. Its heart wrenching to see your own flesh and blood laying there receiving a level of care most people will probably never know in a lifetime. And you hope they never do. As hard as those initial moments are, remember its a benchmark. Its a milestone and everyday things come off. IV bags, lines, monitors, and tubes disappear as a signal of improvement. Jonathan said something on the day of Lukas' operation that has always stuck with me. He looked me in the eye as we said "see you later" to Lukas in the OR and said "today we get to start watching him get better, not worse." I cannot tell you how true this statement is. Knowing they are on the road to recovery and knowing their lives have taken a positive turn makes it just a little easier to see them in those initial hours after an operation. I remember comparing Lukas' heart monitor before and after his operation. As he got better I remember his respirations being within a normal range. I remember his heart beat not being so erratic. I took comfort in these things. I took them as a sign of his improvement. As far as I was concerned, the day of his operation was the first day of his new life. He did things after his operation he had never done before. He smiled. He cooed. He stayed awake through a feeding. I cannot tell you how remarkable those very simple things felt. They meant he was getting better. Thinking of open heart surgery is a scary prospect. Like any medical procedure, things can go wrong. Your mind typically drifts that direction when you get news like this and almost immediately. You always think of the bad before you think of good. Its a pretty natural human reaction. My advice on that subject is this. Be cognizant of the bad. Be aware that things can go wrong, but don't dwell on it. Don't focus all of your energy on the bad. Instead, devote it to the good. Look at success rates, talk to other parents whose children have been through that operation. Find a surgeon who feels right. Ask questions. Ask anything that helps to ease your fears no matter how minute it feels. Whenever the bad creeps in, replace it with the good. Never let that negativity or fear linger. You just have to remember in this situation, it is what it is. Good, bad, or indifferent, you're here. Certain bridges have to be crossed in order for improvement to occur. Embrace these bridges. Embrace these steps and welcome them, for its the pathway to improvement. Its the starting line of a better life. An incredible life. Have faith and hold onto it. Never stop believing and never lose that faith.

Some of the most powerful memories I have of Lukas' journey are the photographs I took while in the hospital. Both before, during, and after Lukas' operation. Not a day went by that I didn't photograph some aspect of his life and I'm so glad I did. I treasure those photographs. So much so I couldn't even delete them from my compact flash card even after I had uploaded them to my computer and archived them. I actually "retired" that CF card. Its kept in a safe place and it will never be used again. It might sound strange to say that I hold so close to my heart photos when my son lay in a hospital, but I do. Its a part of our history. His history. I look back on those photos and they evoke such strong emotions. They are a reminder of where our boy was and how far he has come. Those photos are so powerful that they can tell Lukas' entire story without me having to say a single word. There will be days you don't think you will want to remember, but I promise you will. Photograph every second. Let those photos tell a story. A beautiful story. There are moments forever forged in those photos that I never thought I would want to remember, but I'm so glad I paused long enough to capture them. You will be too, I promise. You will look back on those photos with a fondness and appreciation I don't even have the words to explain.

I've said it a million times since Lukas' journey began and I will say it again. The road is hard. There are lots of bumps and lots of rough patches, but what lies on the other side is pretty miraculous. Those who don't know what Lukas has been through look at me with this profound disbelief when I tell his story. Unless you see his scar or witnessed some aspect of his struggle, you'd never guess his first months of life were not "typical." Bad things happen and you never really know what to fully expect because everyone's CHD journey is a little different. I don't think any two people ever really walk the exact same road with this stuff. But you live for those good days. You bask in knowing that right now, nothing needs to be changed. You learn to appreciate those days. You learn to live one day at a time and appreciate that day for everything it contains. You'll gain a new found sense of the world around you. You'll be forever changed, but in a good way. You will be stronger and you will leave with a little more than you came with. 

That's my advice for any parent finding out about a heart defect, illness or hardship you know your little ones will endure. They are words from the heart. 

Happy Hump Day friends =) 'Til next time...

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Monday, September 12, 2011

The Big One.

I promised a few days ago for a big, picture filled posting about the happenings of the last month or so. That time has come, so here goes nothing.

First, my big boy started soccer. His coach's name is Patrick and I swear he has to be the most patient man on the planet. He is so good with the kids and even though he said that teaching a bunch of 4-year old's to play soccer was the equivalent of "herding cats," he's awesome. His son is on Riley's team and boy is he good. The first day of practice Riley was super tired. Its the first time he's ever really had a structured "activity" after his normal school hours, so those first few times were a little rough. He came home and fell asleep pretty much immediately after getting cleaned up and prepped for bed. His first game came and went and he did such a good job and his team won to boot. Go Green Lanterns (the kids came up with the name, can you tell?)!

the amazing coach Patrick and the Green Lanterns on the first day of practice
Hayden watching his big brother practice
My little man (Hayden) also started school and he loves it. A lot. He literally could not have cared less when I dropped him off the first time nor does he really care any other day for that matter. He runs in, hangs his backpack up, and he jumps right in with his classmates. When I pick him up, he's mighty happy to see me though. He gets a big smiley face sticker everyday because he's such a good boy.

my big school boy
Lukas also met with Dr. Farrell for his first cardiology appointment as an outpatient. It went exceptionally well. He had a repeat chest x-ray and all looked great on that end. She listened to him and made her assessment and said that he sounded so wonderful. We talked about his medications and where to go from here. We are to continue his Lasix until the script runs out, then we can discontinue it. She will keep him on the half tablet of 81mg aspirin though, just to keep his valve and conduit in good working condition. He will have another cardiology appointment in December for an echo just to examine everything working inside. Good news all around and those are the days we live for. Good is a word I have learned to love dearly. 

aren't baby eyelashes amazing?
More photos of Lukas are coming soon. We are working on his shots from his 3rd month birthday to share with you all! Lots more coming, so stay tuned.

I also shattered the screen on my phone, which was an epic fail on my part. It was sitting on the corner of the dining room table and the kids ran by acting crazy and knocked it off. As soon as I heard it hit the floor, I knew. It was shattered from corner to corner. It was not only shattered, but parts of the glass were separating. That meant tiny shards were coming out, which made for a not so pleasant event each time I answered my phone. Fortunately, we have insurance coverage on our phones so I got a new one with little fuss.


On the 27th, I had the immense pleasure of meeting the incredible Kristine McCormick, who is an incredible woman. In her, I found a friend and a confidant. She has worked so hard for the CHD community and in her goodness, beautiful things have happened. Because of her, Indiana will begin screening every baby using pulse oximetry as part of the normal newborn assessment. In her eyes you can see determination and good. I had the honor of photographing an important meeting of hers, where she talked about her work with Operation Healing Hearts and the strides she has made with pulse oximetry testing. She's truly amazing and if you haven't seen her blog, you need to. It will touch your heart in ways I can't even describe.

Kristine's Operation Healing Hearts materials - isn't that photo spellbinding?
The running and gunning continues this week. I have lots planned and a million things to get done. Never a dull moment around these parts. Want to know what I am most excited about? I was given the immense honor of being asked to photograph the Dick Lugar Community Run, Walk, and Health Fair at Butler University, which I am extremely excited about. Its going to be awesome and I can't wait. I've been going every year since I was probably in 6th or 7th grade, so to be granted the opportunity to capture it from my perspective is a pretty big honor.

because everyone needs a random eye picture of course

Happy Monday everyone. Hope your weekend was fun and going to work or school wasn't too much of a drag this morning. Until next time...
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Sunday, September 11, 2011


I will never forget where I sat and what I was doing 10 years ago today as our nation underwent terrorists attacks that claimed the lives of nearly 3,000 innocent citizens. I was in high school and sitting through a lengthy student resource time due to standardized testing going on throughout the school. It was not our day or our time for testing, so we sat in quiet study halls. I remember the moment our principle came over the intercom to announce a plane had crashed into the World Trade Center and asked for teachers not administering testing to turn on the classroom televisions to follow the news coverage. 

As our study hall teacher reached up and switched on the TV I remember not really feeling much. I was young and I don't think I quite grasped the magnitude that a plane crashing into a skyscraper meant that people were in that building dying as the nation watched. When I saw the image of the north tower smoldering with its gaping hole in the side, that reality grasped me a little harder. People were losing their lives right before our eyes. I remember the news coverage at first thinking this was a tragic accident. We watched the live coverage as the second plane came into view and watched as it slammed into the south tower. A large explosion ensued and at that moment the faces of everyone in the classroom reflected the horror of the event we had just witnessed as young high schoolers. We were watching a moment that would forever be forged in history books. I remember covering my mouth and gasping as the cause became evident. America was under attack.

A short time later the news coverage panned to the Pentagon, where a third hijacked airliner had crashed. More innocent lives lost and more destruction. No one in the room could move. We were each gripped with a fear we had never known. How could such a horrific thing happen here in America? We got word of the downed flight 93 in Shanksville and then the towers collapsed. I looked around the room and no one could move. Eyes were glued to the television as we watched these towers disappear from the New York skyline in a cloud of dust and debris. Our study hall teacher was wiping away heavy, wet tears with her Kleenex and sniffles could be heard all over the room. That was the only sound that could be heard and it was pretty much the only sound that was heard in our school for the remainder of the day. Those who emerged from testing were struck with the tough reality that a tragic event had unfolded, to which they were unaware. I will never forget the reactions of my classmates that day. I will never forget their facial expressions, their sobs, and their silence. That silence was deafening.

It was a numbing day. After study hall had ended I remember classes not really continuing as planned. Instead we watched news coverage and drank in everything about this day. I remember going home and not even really knowing what to say to my parents. I remember telling my mom where I was and how it felt watching the second plane crash into the towers. I remember wondering if it was over or whether more attacks would come. I'm not sure I slept a wink that evening. I laid in my bed and just stared at my ceiling. I thought about how terrified those on the hijacked airliners must have been knowing these were their last moments on Earth. I cannot fathom fear so great. I cannot fathom how harrowing those last moments were for those trapped in the towers. That evening I struggled knowing there were children who had parents that would not be coming home. Brothers, sisters, mothers, fathers, children, friends, and family were gone forever; their lives taken by those with no regard for human life. Even their own.

I watched a documentary lastnight that showed the news coverage as it happened. The feelings from that day all came rushing back. Now as an adult and as a parent, it means so much more. The magnitude is somehow greater. Someday I will share with my children what happened on the 11th of September 2001. I will talk to my children about the events of that day and its gravity just as my parents spoke with me about events such as the Challenger explosion. Our nation has rebounded from the tragedy, but its impact is still being felt the world over.

On this 10th anniversary of the worst terrorist attack on American soil, I remember those who lost their lives and the many families affected by this senseless tragedy. I remember. Please take a moment on this beautiful Sunday to remember those afflicted by the events of September 11, 2001 and their families. Remember the heroism and the selflessness of the first responders, the passengers on flight 93, and those who came together in the days following to protect our country and comfort our citizens. Remember.

Do you remember where you were when the news broke of the attacks?
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Thursday, September 8, 2011

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.
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