Sundays are for families.. Then and Now…

Troy and I are VERY family oriented.  We have three beautiful children and choose to live, communally, on the same property with my parents.  Brave right?  LOL  Not really, we feel like we are giving ourselves, and our children one of life’s greatest gifts… the gift of family!  Our children will grow up, seeing their grandparents daily!  I would give ANYTHING to have my Me-me-i (my mother’s mother) and Pap (mother’s father) still around.  My Me-me-i actually only met one of my children.  She died shortly after Owen was born but I know she would be SO proud of my babies!  I was very close to her and I cannot imagine how close my children will be to their grandparents in the coming years!  So I have decided… since we take Sundays off to spend with our family… my Sunday blogging will be devoted to just that… our family.

Many of you know that our daughter was born with VACTERLS Association and spent the first 3 years fighting for her life through 15 surgeries, 378 days in the hospital and 3 major Children’s Hospitals in as many states.  Those of you who DIDN’T know that… now do.  Our daughter is AMAZING.  She was born with most of the structures in the center of her heart missing, a messed up spinal cord, no anus, malfunctioning kidneys and bladder and a brain malformation but nothing gets this kid down.  She has defied every naysayer and broken every rule.  She had been legally dead twice and has fought her way back to relative health.  This July she will turn 5 years old.  Each year we get to celebrate her accomplishments a little by volunteering our time to photograph the Makenna Foundation’s Derby Eve Evening of Champions.  This year they changed up the format a little and made a normally formal event into a JEANS, JEWELS and JULEPS.  It was a fabulous event at Keeneland that we were once again, proud to be a part of.  But this year was extra special because Kyleigh was invited to be a part of it too!!  They asked us to say a few words about her life and how the Kentucky Children’s Hospital has changed our lives and of COURSE we obliged.  Without KCH our daughter would not be alive and we know it.  We are forever grateful to the doctors, nurses and staff at KCH for giving our daughter life and for putting us back together when we fell apart.

Of course we cannot speak of Kyleigh and her journey without talking about the person who has been there with us from day one, her main surgeon, Dr. Joe Iocono.  Joe performed Kyleigh’s first surgery when she was less than two days old and has been there with us nearly every surgery since.  He has traveled states away to join Kyleigh in an OR and has been not only a friend but a guiding light on our journey.  The first picture on the left was taken in December of 2006 at the peak of Kyleigh’s heart failure.  She was not well… as you can tell.  The photo on the right was taken last weekend at the event… what a difference 5 years will make!

There were times when we wondered if we would ever make it here.  I cry at nearly every wedding when the father daughter dance happens because I always have to wonder if I will ever see the day that Kyleigh dances with Troy at her own wedding.  As of now I think I can say that I earnestly believe that Kyleigh will dance as beautifully on her wedding day as she danced on stage this past weekend at her first Dance Recital!  Ahhhh what a weekend it was for us!  I have no idea how our Heavenly Father believed in us enough to give us such a special child, but I count it a huge honor and privilege to be her mommy.  I can only HOPE for the rest of my life, to be half the woman my daughter already is.

We, of course, support the Makenna Foundation, Evening of Champions, Jeans, Jewels and Juleps, AND the Kentucky Children’s Hospital!!!

Congenital Heart Disease Awareness Week: February 7-14, 2011

So of all the things my clients know about me they all definitely know that Troy and myself have THREE beautiful children.  What many may NOT know is that our, Kyleigh, is a survivor of a great many things.  Unlike many childhood diseases or “birth defects” (I hate that by the way… I think every person in the world is fearfully and wonderfully made and NO ONE especially not my daughter! is defective)… which can be cured, my daughter lives inside a body that is much like a ticking time bomb.

Hello, my name is Amber Teater Schmidt and I am a “Heart Mom”.  I am one of the proud many who were told that our child might never “make it”.  One of the many who held vigil for hours on end through the long tedious surgeries.  One of the (far too!) many who sat in an ICU room for 21 days praying that God would allow my daughter to walk out of that room alive and well.  I am THAT mom… the one who people generally look at with “pained” looks as you try to describe the horrors and the victories.  The mom who instantly notices when her child’s “color” is off or when her nailbeds are blue.  The mom who sat straight up in bed with a cold sweat when she heard the monitor go off.    I am the mom who carefully measured medication after medication (up to 37 a day).  The mom who had to hear THOSE words “we need to talk” during her 16 week ultrasound.  The mom who prepared herself for anything and everything but believed for the best!  But most of all I am the mom who will NEVER stop fighting against this horrible disease or FOR hope that my daughter will some day have a REAL cure.

A little more about Kyleigh’s story.  (Pics are included but I will warn you that some may be graphic and MOST will rip your heart out.  If you are not good with needles, close the post now and visit us tomorrow when we are back to our regular scheduled programming!)

(This pic of Kyleigh was taken in the pre-op area about 15 minutes before they took her back to the OR for her first open heart surgery.  It is an image that will forever haunt my memories.  Eventually I had it printed and hung it on her ICU room door.  I wanted the nurses and doctors to know what my baby was SUPPOSED to look like.  At one point she was a bloated and disfigured version of herself that was simply painful to see.  There were many days when I wondered WHY she still hung on… I am sure it would have been easier just to give up but I am sure glad she DIDN’T!)

Kyleigh was diagnosed with a heart “condition” at our 16 week ultrasound.  I had a lot of time between that fateful ultrasound and her delivery to reconcile that my baby was not well.  Not only was she not well… she was, in fact, VERY sick.  The delivery day and we prepared as best we could.  There were neonatologists, cardiologists, pediatricians and so many other people that I cannot even begin to remember them all.  My daughter had a cardiologist before she was even born.  This beautiful woman had always given me reassurance that everything would be fine no matter what and she was right.  We were also presented with the fact that our daughter may need immediate transport to a different hospital for surgery.  We had NO idea what would transpire that day.  It was supposed to be a day full of joy and happy memories.  Unfortunately for us, her birth turned into an ongoing 3 year nightmare.

(A pic taken by my dear friend and fellow photographer Lisa Zanchi about 30 minutes after Kyleigh’s birth.  Kyleigh was already covered in lead, wires, tubes and lines by the time I got to hold her for the first time.)

Our daughter was born on July 13, 2006 a tiny little peanut, breathing beautifully and screaming loudly.  This was the most beautiful sound we had ever heard.  It was quickly discovered that her heart, was not her only issue and actually at the time of her birth, was a non-issue if you can believe it.  Our daughter’s heart problem is just a tiny part of an overall bigger set of problems which is labeled “VACTERLS” Association.  She was quickly rushed off to our hospital’s NICU and then later transferred to the local Children’s Hospital.  At that point they decided that she was far too sick and too small to even think about doing her surgery at the time of her birth, plus she had more “life-threatening” issues.  Hard to believe that there are things worse in life than a bad heart.

Kyleigh’ s heart was diagnosed as a Complete AV Canal (ASD + VSD) with involved valves which made it look more similar to Tetrology of Fallot.  She was missing nearly every structure in the center of her heart and would need a vast reconstruction.  We spent the first few months of her life nursing her 24 hours a day.  Our insurance company provided us 1 hour per week in Nursing care for a nurse to come, listen to her lungs, weigh her and “check” on us.  About 1/4 of our fridge was taken up by medications and every hour there was something to do to keep our child alive.  Kyleigh’s care was all consuming.  Heart monitors, apnea monitors, feeding tube lines… our daughter had so many tubes and leads on her at night that we could barely find her body.

The weeks faded into months, and the meds stopped working.  So we added more.  Stage 1 heart failure led to cold feet, hands and a blue mouth.  Enter more heart meds and Stage 2 failure.  Our goal was to get Kyleigh to 12 pounds (double her birth weight) before her surgery.  In February 2007, just 6 short months after her birth, Kyleigh was still only weighing 10 pounds but it was decided that she could not wait any longer.  She would need surgery despite not being to their “target” weight.   At this point everything became a whirlwind.  I knew things were “bad” when the open heart was scheduled in less than two weeks.  I didn’t even know they could get things done that quickly!

We were sent to Cincinnati Children’s Hospital under the care of Dr. Pirooz Eghtesady.  When we first met Dr. Eghtesady he assured us that children bounced back fast and that we would likely only be in the ICU for 3 days post op.  I knew, in my heart that this was not so.  I like to think that God gave me the heads up on that one.  I packed for 3 weeks.

Surgery day came and no matter how “prepared” you are… you never really ARE.  The night before her surgery I spent the night in the rocking chair, balling and holding my girl.  That night was the first and last time I ever allowed myself to ask the question “What if?”.  I knew that I could be holding my baby for the last time.

The next morning was EARLY.  The day BEFORE surgery Kyleigh had pre-op testing but we decided it would be best if we came HOME that night to spend time with our boys.  We also knew we had a long journey ahead of us and just wanted one last night in our own beds.  That meant, however, that we would have to drive to Cincinnati (a 1.5 hr drive) at 4 am.

Surgery day was possibly the most horrible day of my life.  13 hours of surgery led to “complications” including fevers over 106 and febrile seizures that ravaged her body.  Days went by and my daughter still had not “sinus” rhythm.  By Friday, the day were supposed to be discharged from the ICU, Kyleigh was still paralyzed and fighting for her life.  There were no explanations for why her body was reacting so violently to the surgery and pain afterward.  Only worried looks.  Whenever I would ask about the final outcome, the only thing I received for an answer was “Let’s just worry about today”… which I knew, meant that they did not know if there would BE a tomorrow to worry about.

(This photo was taken by another amazing photographer friend Julie Williams.  At the time I could not even think of taking a photo.  I was too emotional.  Julie promised me that I would want these pics after it was all over and I am SO GLAD that she took them.  People rarely get to SEE exactly what kind of horror we dealt with.)

(A few days after the surgery and my daughter was still being “paced”.  She had no natural heart rhythm.  It was feared that her heart was damaged beyond repair and she might need a pacemaker.)

Countless liters of blood, platelets and other transfusions went in.  Double collapsed lungs were tough to deal with.  But the PAIN was the hardest for me.  Knowing that my daughter was in horrendous pain and maxing out dosages of pain medication was the worst feeling in the world.  I was helpless to do anything but pray.   Finally things start to look up.

We were transferred to the “step-down” unit and were preparing to go home but our daughter was STILL having issues.  I kept telling nurses that I just KNEW something was wrong.  Finally, the night before we were supposed to be discharged to HOME, Kyleigh crashed.  She had a horrible night and her nurse knew something was wrong.  During rounds the doctors decided that an echo was appropriate.  What they found SHOCKED everyone except me.  Kyleigh had an 80CC pocket of fluid behind her heart.  In less than 1 hour my daughter was taken from the floor, to the ICU and back into an emergency open heart surgery.  The surgeons quickly decided that they would not be able to access her fluid through the chest and would need to open her up again.  This carried HUGE risks for a now 9 lb baby who just had another open heart less than a week prior.

(No matter what, Kyleigh always gave me a glimmer of hope.  The day I took this photo was around the end of the second week in the ICU.  I looked over and there she was, totally sedated and yet this hand was held high in the air as if to be a victory cry from a body that had all but given up.  I think it was her way of telling me that she had NO intentions of giving up!)

5 more hours of surgery led to a discussion with her surgeon in the post-op room where he described the scene as gruesome.  Kyleigh had an infection which grew out two forms of staph.  The fluid inside her chest was pus and apparently when he opened her the second time to clean her out, it was like something out of a sci-fi movie.  Just the week before, when the PA removed Kyleigh’s leads and wires I kept telling everyone that I SWORE I saw pus coming from her incisions.  They wrote me off as a “hysterical” mother.  I was right.  That day I decided that I would never again take “NO” for an answer until I felt that it was WELL with my SOUL!

(We started marking the tally on the wall.  Our nurses thought is was hilarious but at some point we lost track of what day it was, what the date and time were.  Troy said we scratched on the wall like prisoners!  LOL)

Since those open heart surgeries Kyleigh has had 10+ more surgeries on various different issues.  We are happy to say that she is doing well now.  She is growing and although she still relies on a feeding tube, she has not been hospitalized in over a year!  (Knock on wood!  PRAISE GOD!)  She will likely grow up happy and sassy as she always has been.  But we know, that she lives on borrowed time.  She, by all accounts, defied the odds against her and is alive by no small miracle.  She still relies on a feeding tube, but that, like everything else in her life, is minor in comparison to things that she might still face.

Congenital Heart Disease is a silent killer.  Most parents take their babies home with no knowledge of anything “Wrong” and end up with tragic consequences.  We were the lucky ones whose child had a heart that was BAD ENOUGH that it was detected before birth.  This gave our daughter the best care and best odds that money could buy (and that God could bless us with!).  We have far too many friends, all of whom, did not have that luxury.  It breaks our hearts to know that other children, with broken hearts, go undiagnosed until it is too late.  KNOW the signs and symptoms and if you FEEL that something is wrong… PUSH until someone listens.  My daughter’s doctors may think that I am the most annoying mother on earth but my daughter is ALIVE in no small part because PUSHED.  I refuse to be pushed aside.  I listen to myself and to that still small voice.  I pray and I trust that my Heavenly Father will go before me and Kyleigh just as HE always has.  Today, I pray for a cure.  I pray for research and I pray that I never have to see another day inside the walls of A6Central or the CICU.  We know that for Kyleigh, she may faced future surgeries.  We know that as she grows the patch work that is her heart may not grow with her.  We stand ready for this but EXPECT a miracle to continue in her.  We also know, that other families were not as lucky as ours and that breaks my heart.

Feel free to share Kyleigh’s story to help us raise awareness for this horrible disease!

Find out more about Congenital Heart Disease here:

Congenital Heart Disease Information Network

Cincinnati Children’s Hospital Heart Center

American Heart Association

Award Winning Photographer- Amber Schmidt

Schmidt Studio and Gallery is proud to announce that together with the Kentucky Children’s Hospital the piece created for the Kentucky Children’s Hospital Fall Mailer (as seen below) won a Silver Addy Award!!  Top that off with the Judges Choice award for Excellence in Copyrighting also!  We are proud on so many levels!  To be able to share our photography and our story and raise money for the Children’s Hospital all at the same time was a truly amazing experience!

I have to give kudos to Aimee Baston (KCH Office of Development), and Jennifer at Sumo Designs for the layout!

God has blessed us with the opportunity to share His love and mercy and we are very proud to say that we KNOW miracles happen.  We know because we live with one every single day.  Every breath that Kyleigh takes is a new miracle and we treasure her!!!  We are so proud to be her parents and are genuinely glad that God chose us to be her guardians!

The Text of the letter reads:
Dear Fellow Kyian,
When I found out that I was having a baby girl, I dreamed… I dreamed of little pink dresses, games of Peek-A-Boo and tea parties. I never dreamed of scary hospital visits, endless surgeries and many worried filled nights watching my baby fight for her life.

I dreamed of what my daughter would look like. Though you cannot see from her picture, Kyleigh- now two years old- has fought through 13 major surgeries (including two open heart procedures). She has battled through life threatening staph infections and double collapsed lungs.

I never dreamed that Kyleigh would be one of the thousands of children helped by the amazing compassion and skill of the Kentucky Children’s Hospital each year. They have become like family to us. Because they have cared so well for my little princess, I ask for your support today.

A gift of $12.50 per month over the next year supports and enhances the incredible care Kentucky Children’s Hospital provides through the best doctors, nurses and staff available for our children, right here in Kentucky. If you wish to take a leading role in the quality of healthcare for Kentucky’s children I invite you to join the Leadership Circle of giving at Kentucky Children’s Hospital (see enclosed bookmark).

Now, I dream of what your support can do at the Kentucky Children’s Hospital. Please join me by helping the hospital today!

Sincerely,
Amber Schmidt
Kyleigh’s mom

As always if YOU would like to make a donation to the Kentucky Children’s Hospital in Ky’s honor please visit the link below!

https://giveto.uky.edu/KCH_p/kch.htm

Kentucky Children’s Hospital Radiothon 2008

WE NEED YOU!  As many of you know our family has literally been to hell and back in the past two years and we are still there.  I apologize to our clients that we have been MIA for the past two weeks but we have been back in Cincy dealing with new Kyleigh issues.  This week Kyleigh was dealt possibly our hardest blow yet.  Ky has been fighting a chronic UTI (or what we thought was a UTI) for 5 weeks now.  4 different infections have ravaged her body for well over a month.  3 different antibiotics have done nothing for her. Yesterday we were told that over the course of her two years her kidneys have sustained significant damage.  Her right kidney is functioning at 30% or less and her left at 70%.  Today, I woke up knowing that yet another part of my daughter’s body is failing her. The biggest issue with Ky’s kidneys is that she is a HEART baby.  How does that matter?  As her kidneys loose more function her heart will start to feel the stress.  Her heart is not normal… it is “repaired”.  We are left now to try our best and PRAY… and watch our doctors who we love so much as they shake there heads “no” that there is not a lot we can do.

TODAY I am begging you.  WE just spent the week in Cincinnati because we do not have a Pediatric Urologist here in Kentucky.  We are forced to leave our home, our boys, our hospital that we call home to go find treatment for Ky.  This is my plea to you… CALL and donate to the Kentucky Children’s Hospital Radiothon!!!! Even if you cannot donate… forward this blog posting to your friends, family, send text message, send it out to anyone on your contact list, post it to your OWN blog!!!  Social networking sites… anything!  Just do a little something today and know that a family very close to you will be eternally grateful to you!!!!

My incentive to you, my clients, is that I will offer EACH of you a FREE 8×10 for EVERY $50 that you donate to the hospital!!!! You send me an email and I send you an 8×10 of your choice from ANY session we have ever shot, any wedding, any senior, any family, baby, anything!

Tonight Kyleigh will host the Rush Hour Power Hour.  I would love for HER hour to be the biggest yet for the Radiothon.  Here are the details!  Please listen for our live on Air interview tonight between 5 and 6 pm!!

Thursday August 21, 2008
from 5-6 pm
on 92.9 the Bear

Our family will host the 5-6 pm Power Hour!!
We invite you to join us in listening and YES my online friends… you can listen LIVE on line!!!!!!

Click here to listen!

or go to The Bear website and click on the Listen live button on the right hand side.

Everyone asks WHAT can we do to help Kyleigh and your family? THIS is what you can do. This week we spent the week in Cincinnati. We had to take the boys to the grandparents houses and yes they love going but that is not our choice. We have no choice for several of Ky’s conditions but to pack up and leaved our beloved Kentucky Children’s Hospital to find the treatment she needs. Kentucky Children’s Hospital is HOME to us. We have made many friends there and we truly feel blessed to call it our home hospital.

I encourage each of you to make a donation. If its $10 just once that is $10 they did not have before!!! Donate in Kyleigh’s name, in YOUR child’s name, in the name of any child who is special to you but just make a donation!!

You can make a donation HERE

Our family also had a telethon montage made and as soon as I can get my hands on the mp3 we will be posting it here! Wish us luck as today is SURE to be a very emotional day especially with the events of the week.

Pop Tabs for the Ronald McDonald House

I just had to take a minute out of my furious proofing to post a pic and say a HUGE Thank You to Anna Schuler, Collin Barber and their families.  Every since we first met this couple and became their wedding photographers, they have been collecting pop tabs from their own homes and from those of their friends! Today we met one last time before their wedding on SATURDAY and they delivered to me three GIANT bags of pop tabs!!  That brings tears to my eyes and makes my heart sing. I cannot wait to deliver these to the Ronnie House here in Lexington!!!  I will definitely take pics along the way!!

Just as a fun fact… Did you know that pop tabs are made of high grade aluminum and that there is more value in the pop TAB than there is in the entire can?  Pop tab collection accounts for a SIGNIFICANT portion of the Ronald McDonald House’s donation income!  I highly encourage you… PLEASE PLEASE collect the tabs.  It is something SO simple that makes such a huge difference in the lives of so many sick kids and their families.  Ronnie houses truly are a home away from home for those of us who are forced to leave our homes to find medical care for our children.

To find a local Ronald McDonald House in your area click here:

Ronald McDonald House Charities

I must say I have some of the BEST, most generous clients in the world.

So Congratulations to Anna and Colin!  Saturday is coming soon and I feel it my privilege to be a part of your day!  I cannot wait!  It is going to be a blast!

PS… ignore the crappy pic via the Iphone!!  LOL

Evening of Champions Derby Eve Gala 2008

Okay this is it!!! The moment you have all been waiting for……Drumroll please! I compiled all the highlights into a slideshow. I hope that each of you watch and see what a BLAST the evening was and join us next year on Derby Eve!!! It promises to be yet another amazing evening of fine cuisine, great music, amazing auctions and good times!

Welcome to Midnight at the Oasis benefiting the Kentucky Children’s Hospital through the Makenna Foundation. Presented by White Greer and Maggard Orthodontics.

Slideshow music generously provided by: West8Five – Visit them here: http://www.myspace.com/west8five

A special thank you goes out to Heather Loehr of Loehr Photography who drove from Indiana and donated her time to photograph the event and to Shelly Dawn who also jumped on board on a moment’s notice and did a great job!

makenna foundation. evening of champions derby eve gala

Part 1… there will be many more to follow but last night we had the privilege of attending and photographing the Derby Eve… Evening of Champions Gala for the Makenna Foundation to benefit the Kentucky Children’s Hospital. Obviously everyone knows that I have a certain attachment to all things dealing with KCH but last night was an absolute blast! If you have never been to the Derby Eve Gala at the Radisson you MUST put this on your list of things to do before you die! Seriously, amazing food, great gambling, rockin music and dancing, silent auctions… This event is the PLACE TO BE! (just in case you hadn’t gotten that by now!)

I will be posting all of the pics in galleries here and on the Makenna Website but here is a sneak peek of a few of my friends that I just love to torture with my blog postings!

Welcome to Midnight at the Oasis………

Our dearly beloved Dr. Joe Iocono and his (uhhmmmm better half) his lovely wife Susan…. for all obvious reasons he is the first on the blog posting! LOL So the fan club can pipe down now!!!

Mr Hunter Lisle of the Arthur Murray Dance Studio. Ladies and Gents… all of my wedding couples listen up!!! If you guys are getting married anytime in the next millennium… you must go visit Hunter and his crew. I don’t want to see any more lame first dances! You need some serious hotness in your first dance and Hunter is just the one to give it to you.

Miss Kentucky………… is she gorgeous or what ???

and of course “The Puppy”… he was a part of the Live Auction! OMG you could just squeeze him but MAN he was HUGE! He is going to be one BIG DOG!

Kyleigh’s Silver Ribbon Campaign

I wear a silver ribbon. It is an outward sign of the inner turmoil that I face everyday as the parent of a VACTERL child. It is a small but powerful reminder that our lives will never be the same. It takes my breath away. I never thought that I would wear a ribbon and certainly not for my daughter… but here I am and I wear my ribbon so that people will ASK. I need everyone to know how hard my princess has to fight to stay here with us.

I wear a silver ribbon to convince myself that some day we will have a normal life and be able to tell Kyleigh the story of the ribbon and why its so special.

I wear a silver ribbon to remind me how precious life is. In remembrance of the VACTERL angels who are no longer with us.

Most of all I wear a silver ribbon to remind myself to HOPE for a better day tomorrow.

Everyone asks me what can they do to help our family? .

I have one simple favor to ask… on October 24 wear a silver ribbon. Wear it for me and for Kyleigh and for hope.

Feel free to print this out and share it with your friends and loved ones!! I invite anyone to email us directly if you would like to receive silver ribbons!! I have an amazing friend Kim Townsend who has been working furiously creating the beautiful silver ribbons.

Email us at : schmidt.amber@kentuckystudio.com if you would like to receive postcards and/or ribbons! Please specify in your email your name, address, and number of cards / ribbons you would like!!!

October 24 and 25 will be challenging days for us. I am scared to death that we are going to face a reality that we have been able to put off for over a year now. Just knowing that we will have people out there wearing these ribbons and praying for us will make all the difference in the world!!!

You can read even more about this on Kim’s blog: Simply Splash

Chili’s & St Jude

So we all eat out! If you are like us we eat out WAY too much!! For once I encourage you to take your family out for a nice dinner. Its for a good cause!

Chilli’s is Partnering with St. Jude

On Monday September 24, 2007 participating Chili’s restaraunts will be donating 100% of their profits to St. Jude Children’s Research Hospital. Obviously this is something that is very close to my heart. We have never had the great misfortune of needing the services of St. Jude but knowing how amazing children’s hospitals are in the lives of those who need them – this is very important.

So go out to your local Chili’s on Monday evening and enjoy!!

Find a Chili’s near you!