Thanks for all of your support!

I apologize for the delay it making this posting. Things have been busy and I haven't really had much to say as of late but I wanted to thank everyone who attended the walk on September 14th or helped support the event. The event was a huge success and the great people from The Congenital Heart Information Network and The Children's Heart Foundation are planning to have the event again next year. The event raised about $25,000 and that means a lot of families in need of help and guidance will get some assistance. Personally it ment a lot to Emily and I to see all of our friends and family there walking in memory of our Lily. It's been over 8 months now since we lost Lily and Emily and I still have to relieve that day every day. It's still always on our minds and a topic of discussion in our house each day. It was a great feeling to see everyone there with Lily on their minds and in their hearts. Events like this are ways that we still can feel close to our daughter so we greatly appreciate everyone coming out and sharing this moment with us. The sun shined bright on us that day!

Come Walk for Lily!

On September 14th, please come join Emily and I for a walk at the Cleveland Metroparks Zoo. The walk is a fundrasier for the Congenital Heart Information Network and the Children's Heart Foundation. We have previously helped raise money for the CHIN with the "Circle of Heart's Campaign" back in February thru May. Emily and I have started a team and if you are interested in joining our team, please click on the link below. We are trying to get as many people as possible to join our team and walk in Lily's memory. It's been a tough year for Emily and I but we are trying to stay positive and do something positive to help others in the memory of our daughter Lily. Everyone has been so supportive and we thought this would be a great way for everyone to get together, help raise money for a very important cause, and enjoy a nice day at the zoo. Anyone who signs up on our team gets free admission to the zoo for the day and there will also be light refreshments after the walk. All family members including kids are welcome to join our team. The walk will be through the zoo grounds early in the morning on September 14th. If you can't make it to the zoo on the 14th but still want to help, please contact Emily or myself. We are helping the CHIN out with this event and have volunteered to help supply refreshments after the walk for all of the participants. They are expected a large amount of walkers so please come be a part of the fun and walk for Lily's Dream Team!

Link to join Lily's Dream Team:
http://heartstrides2.kintera.org/lilyonderko

Save the Date!

I just want to tell everyone to mark Sunday, September 14th down on your calendar as the date of the first annual CHIN/CHF Heartstrides Pediatric CHN Heart Walk at the Cleveland Metropark Zoo. Tenatively the event will start at 8:00am. This will be a family fun walk at the zoo where anyone may attend and walk in honor or memory of someone they know that has been effected by a Congenital Heart Defect. We have teamed up with the local chapter of the CHIN (Congenital Heart Information Network) and are trying to spread the word about this event. Emily and I are trying to do what we can do assist the local Ohio chapter in making this a great event for all. I know that Emily and I would really appreciate many people coming out to the zoo that morning and walking in memory of our Lily. There will be many more details in regards to this event so check back occationally for more details!

Thanks!

Meet our new friend Brendon!

Attention everyone! I am asking that everyone take the time to read the story of Brendon Shadle. We just recently met Brendon and his mother Melody but we previously had been made aware of his story. When Emily and I heard about this amazing little boy who suffers from similar heart conditions that our daughter Lily had, we wanted to learn more. Brendon also suffers from a Congenital Heart Defect known as Pumonary Atresia but his case is more complicated. Brendon is four years old and has been through a lot in his life, as has his family. Instead of retelling his entire story, I will direct you to a website dedicated to telling Brendon's story: http://www.caringbridge.org/visit/brendonshadle
Please take the time to visit his website and learn about this amazing little boy. Once Emily and I learned about what Brendon and his family were going through we decided we wanted to try to help. Today we got the opportunity to meet Brendon and now we want to help even more. Brendon's mom Melody has been working hard to raise money to help deal with the overwhelming medical expenses that have piled up over the last four years. Brendon faces further surgeries in the near future, one that he will need to travel all the way to California for. I want to get the message out about Brendon hoping that others will want to help as well. Please visit his website and read his amazing story. Also, this Saturday, June 14th, there will be a cookout held at McCarthy's Ale House of Avon Lake. The event starts at 5:00pm and tickets cost $20.00 at the door. It will be a night of great food and fun and will be for an important cause. If you come you will be helping raise money to help Brendon and his family. Let's make sure Brendon and his family get all the help that we can possibly give them. Please pass this on to everyone you know!

Thanks!

Lily's Garden at Ronald McDonald House

Here's a few pictures from this past Saturday at the Ronald McDonald House:

Before:

After:

The volunteers that made it possible:

Thankyou to everyone who helped us build such a wonderful place in memory of our Lily. We hope that the families in need at the Ronald McDonald House can enjoy Lily's Garden and we hope that it brings joy into their lives. It's amazing what 20 people can do in a few hours with a couple of shovels, a few flowers, a giant rock, and a lot of really big hearts!

Lily's Garden at RMH

Thanks to all of Emily's great friends in her book club, a special area in the gardens of the Ronald McDonald House in Cleveland will be utilized in a very special way. A special garden in memory of our daughter Lily has been planned. The ladies in Emily's book club came up with the idea shortly after Lily passed away. Now that the weather has finally started to warm up (somewhat) it's time to roll up our sleeves and get a little dirty. This Saturday, members of Emily's book club, some family members, and some friends will be meeting at the Ronald McDonald House in Cleveland to begin working on Lily's Garden. This will be a permanent garden on the grounds of the Ronald McDonald House. This garden will be a place where families can relax and have fun and watch their children play while they visit or are staying at the Ronald McDonald House. There will be tons of beautiful plants and flowers in the garden and much more. The above picture is of the grounds as they currently look. We plan on turning this spot into a colorful, fun outdoor area just as Lily would have wanted. Check back next week for pictures of the garden after we get our hands dirty this Saturday. For more information on the Ronald McDonald House of Cleveland, please visit:
http://www.clevelandrmh.org/

Fundraiser at Tailgators

This past Saturday we held an event at Tailgators Sports Bar to help raise money to aide families that have a child with a Congenital Heart Defect. We held a Silent Auction, a 50/50 raffle, and a special raffle for a set of Club Level tickets to a Cleveland Indians game. The night was a huge success. Emily and I had been trying to raise money for the past two months for the Congenital Heart Information Network's "Circle of Hearts" campaign. We had a fundraising goal of $5000.00 and as of a month ago, it didn't seem like we would even come close to that. Thanks to the event we participated in at the Winking Lizard and the fundraiser at Tailgators, I am pleased to announce we had met and surpassed our goal of $5000.00. In fact, we raised almost $5000.00 alone at the event at Tailgators. The event was a huge success and I think everyone had a lot of fun too. We raised a lot of money for a great cause but we also raised awareness on CHD's. We also got to share Lily's story with lots of people. I only can hope that Lily somewhere knows how many lives she has touched. Our little girl has inspired us to try to reach out and help other families in need. We have donated the money from the Indians ticket raffle, the 50/50 raffle, and other flat donations to our Circle of Hearts fundraising site for Lily. If you visit the site you will see we have now surpassed our goal. Once we have all the money from the silent auction in, we are going to the majority of it for a donation to the Congenital Heart Information Network's "Spencer Fund". Spencer's Fund directly helps families in need who are dealing with a child that has been effected by a CHD. Many of these families are spending countless hours in hospitals while there child is trying to recover from major heart surgery. Some of these families are having difficulty paying bills and providing for their other children. We are also donating a portion to the F.E.E.L. program at Fairview Hospital. The F.E.E.L. program (Families Experiencing Early Loss) did a great job taking care of us while Emily was still in the hospital recovering after Lily had passed away. That program helped us when we needed it the most so we are more then happy to repay the kindness. Emily and I want to thank everyone who particpiated in some way with our event at Tailgators and we want to thank everyone who participated in our fundraiser for Lily over the past few months. We could never have reached our goals if it was not for the generosity of all of you!

Party for Lily

Come join us May 3rd at Tailgators Sports Bar in Avon Lake from 3pm to Midnight to celebrate and remember our daughter Lily Marie. For the past few months, Emily and I have been working hard to raise money and awareness for the Congenital Hearts Information Network's "Circle of Hearts 2008" campaign in honor of Lily who passed away this past January due to a Congenital Heart Defect. Please come and have a bite to eat, maybe a few drinks, and hopefully some laughs with some great friends. We have events planned throughout the evening including a raffle for a set of 4 Club Level seats at the June 15th Cleveland Indians game. Proceeds from the evening will go towards Lily's Circle of Hearts fundraiser. We are pleased to announce we are close to our fundraising goal of $5000.00. Please join us to celebrate the moment when we meet and pass our goal in memory of our little angel. Come early, come late, just join us in celebration of Lily. Please contact us if you cannot make it but are interested in purchasing raffle tickets. Tickets are $5/pc or 5 for $20.
Tailgators is located at:

Tailgators Sports Bar
32370 Lake Road
Avon Lake, Ohio 44012
(located in shopping plaza of old movie theater)

Hope to see you there!

Blog Update

Hello to everyone still checking out Lily's Pad from time to time. I have made a few changes to the blog. It has obviously shifted from a blog that reports on the progress of Lily (as originally intended) to a place where friends and family can check for updates on the online fundraiser and other events we have planned to honor Lily's memory. I want to thank everyone who has supported the Circle of Hearts fundraiser for Lily. The fundraiser is still going strong and my new goal is to look for support from local businesses in our area that might want to help. I should have some exciting news regarding this hopefully soon. I have been trying to spread the word about this blog and the fundraiser to more people so anyone that is new to this blog please start by going to the archives and reading from the first posting back in September 2007. I want Lily's story to be told from day one. The first posting was made after we first learned that Lily had a Congenital Heart Defect. The posting on January 29th, 2008 explains what happened on the day Lily was born, the 28th of January. Also, on the right hand side of the blog there are important links that everyone should check out. There is a link to the Circle of Hearts Fundraiser in memory of Lily. There are also links to sites with important information about Congenital Heart Defects and the Cleveland Clinic Children's Hospital. Thank you for visiting if this is your first time and thank you to everyone else who has been there supporting us from day one!

Fundraiser Update

I just wanted to give an update on the Circle of Hearts Online Fundraiser for Lily. Thanks to all of our family, friends, coworkers, and others who just have a big heart, we have been able to raise over $3000.00 We are more then half way to our goal of raising $5000.00 in support and awareness for Congenital Heart Defects in Children. We are so proud that so many people donated in memory of our daughter Lily Marie Onderko. We feel this is a great cause and is obviously close to our hearts. Thank you to everyone for being there and supporting us! Please help us continue to spread the word about this great charity. We want to meet and exceed our goal!

Fundraiser for Lily

Emily and I have started an online fundraiser to help raise money and awareness on Congenital Heart Defects in children in honor of our daughter Lily who recently passed away shortly after birth from a CHD. We are hoping that by raising money to fund research on Congenital Heart Defects, our efforts might some day save the life of another child. After going through what we have gone through and are still going through, we hope that no other parent will have to loose their child. Please visit the link below to go to Lily's online fundraising page. Please spread the word to everyone who might be interested in helping. We know that times are tough right now but even if you can only give $5, we would appreciate it greatly. Please help us spread the word on this very important cause.

Thanks for your support!

http://tchin.kintera.org/lilyonderko?faf=1&e=1526617148

Thank you for your support

I am not sure if anyone is still checking this blog or not, but if so, I just wanted to say thank you to everyone for all of your support. It has been extremely hard for Emily, myself, and our family to deal with the loss of Lily. I don't think it is something that we will ever get over but we are trying to find a way to continue on with life. We really want to do that for Lily. Emily and I feel that we need to live the rest of our lives in honor of Lily and experience all the great things in life that she never got a chance to do. We have been overwhelmed by the amount of support that we have received. All of the cards, the flowers, the phone calls......everything has been amazing. It's amazing how many lives our little girl has touched in such a short time. Life is still difficult right now for us but we are doing our best to stay positive. Sometimes its hard to find the positives in life right now but that doesn't mean we should stop looking. Lily changed our lives in a way I don't think we have fully grasped yet. In some way she has brought us closer to our family and friends. The support we have received from everyone has kept us going when we thought we couldn't. We ask that you continue to pray for our daughter Lily and keep her in your thoughts. Many of you found out about this blog for Lily after her birth. I ask you to please go back and read her story from the first blog posting up to this posting. Her birth and death are not her complete story. We felt that Lily's story truley began many months ago when we found out she was, our Lily. (The first posting was in September 2007) If you have passed this blog on to someone else to read, encourage them to read her entire story as well. It wouldn't make sense to open a new book and start reading it from the last chapter. You need to know what happened at the beginning to understand the end.

Thanks again to everyone for your love and support.

The Miracle of Life

Sometimes things in life happen for a reason. Somethings cannot be explained. When you think you are prepared for everything that life can throw at you, something unexpected happens that takes your breathe away. Yesterday our daughter, Lily Marie Onderko, was born into this world gracefully at 2:22pm. As you all know, we have known since week 18 of the pregnancy that Lily had a Congenital Heart Defect known as Pulmonary Atresia. After months of countless ultrasounds and counceling from the a team of doctors at the Cleveland Clinic we went into this weekend with very high hopes that everything would work out and Little Lily would be home in a few weeks. Things didn't really happen as scripted. Lily arrived kicking and screaming as expected. As soon as she felt the air outside of Emily's stomach she let out a giant cry and started kicking her legs and swinging her arms. I was sitting near Emily's head behind the curtain and I stood up as they pulled her out. When I saw her I felt this rush in my body that I had never felt before. The feeling of joy and happiness almost knocked me off my feet. The beautiful baby that I was staring at was a part of both Emily and myself. From that moment, I felt like my life had changed and that I had somehow changed inside. Earlier in the day I wondered if I would feel like a father to her or if it wouldn't seem real. I instantly knew that I loved her and that she was the most important accomplishment of my life. If I did nothing else in this world I knew that I had helped bring her to life. Initially she was doing well and she was the most beautiful color of pink. She was moving around in her warmer and they were checking her vital signs. Her weight at birth was 5 lbs 12.6 ozs. They quickly prepared to take her to the NICU as expected to do a scan on her heart. I watched as they listened to her heart and cleaned her body. I said hello to her and she opened her eyes and looked directly into mine. I am sure the moment was only a few seconds but it felt like we locked eyes for hours. They bundled her up and took took her to Emily's bed side so she could see her new daughter. Lily was wrapped up in a blanket and a little hat and only her face was visible. Emily and Lily shared a memorable moment with each other and Lily was able to understand how much her mother loved her. They took Emily out to recovery and I ran out to the waiting room to show everyone the pictures of Lily. I felt like I was floating. Everyone was so excited to see the picture I had with Lily's eyes open. I ran back to see Emily and I ran into the doctor on the way. He asked to walk with me and he told me they were going to transport Lily via helicopter right away to the Cleveland Clinic main campus. This was very unexpected. We thought they wouldn't transfer her for two days. She was having problems breathing and the left side of her heart was not pumping any blood. When you combined issues with her left side to the right side heart issues it left a very sick baby. They worked to stabalize Lily while they waited for medical helicopter transport team. They told us in the mean time they were giving her medicine to help her heart and lungs and they started CPR to keep her alive. The transport team arrived but by that point they realized that both sides of the heart were not functioning. There was no chance for a transplant and they ran out options to save her life. They broke the news to us while in recovery. I felt like someone ripped my heart out of my body. I was so overtaken that I thought I wasn't going to make it. Emily was still under heavy medication from the surgery and she couldn't walk. They pushed her in her bed to the NICU so that we could see Lily for a few moments. She was still breathing and trying to hang on so that she could spend a little time with us. We got there and she looked so peaceful. She was a beautiful baby girl and she made us so proud. I don't want to explain everything else that happened in the NICU but I will say that some members of our family did get to come and see her while she was still with us and share in her wonderful but short life. After everything was done that could be done we decided to save her from suffering and pain and let her go in peace. We spent many more hours with our daughter and tried to find some reasoning for what we were going through. We know what caused her dealth but we will never have a reason WHY. The question will always be WHY? WHY US? WHY our family? WHY did such a little innocent girl who only knew one thing in life, that her mother and father were so proud of her and loved her dearly, had to leave so soon. This will never be answered. We thought that we were put here on this earth to take care of her but we now think she came her to make a difference in our life. I am sure many of you are wondering why I am taking the time to write on this stupid blog that now seems so silly. This is my way of telling everyone what happened. This is my way to cope with what has happened to us. Right now I cannot talk about this issue but I know people care about us and Lily and want to know what happened. I started this blog after I found out she had a heart condition because I wanted to make sure everyone knew her story. Yesterday, January 28th 2008, is another chapter in her story. We refuse to let this be the end of her story. She will be with us in our memories and hearts forever and she is waiting for us somewhere. She is watching over us and protecting us. We feel pain right now and that is because we love her. She is now our angel and will be a part of our us forever. We ask that everyone keep Lily in their hearts and know that she was born into this world, lived in this world, and experienced our love. We will survive and we will continue living in honor of Lily. Yesterday was the best and worst day of our lives. We would not trade the few hours we had with her for anything. In time we will keep those hours in our hearts and mind. For everyone who has followed this blog and followed the progress of Lily, we thank you from the bottom our heart. Just please pray for her and always remeber the story of Lily Marie Onderko.

Baby Lily News

Stay Tuned.......

There should be some exciting new developments very soon on the status of Lily and Emily. More information to follow as soon as possible!

Lily's nursery

Above are some pictures from Lily's new nursery that we just finished. Emily and I spent a lot of time making this a special room for Lily. The one picture I should have included is one of the inside of her closet. Her wardrobe is getting mighty impressive. Emily hand painted the "LILY" letters and added the flowers on them for a nice touch. Our dog Sadie was not happy when we first starting slinging the pink paint around on the walls but she has claimed this room as her own. I think it is her last ditch effort to remain the lone "child" in our lives. Sadie has been sleeping on the pink rug in front of Lily's crib almost every night. I think Sadie believes we created a special room for her. She is going to get a rude awakening soon. This monday starts week 34 for Emily's pregnacy. Lily is progressing well and is measuring ahead of schedule in size. That is great for Lily except the doctor's are beginning to wonder if she will last the full 40 weeks or make her grand entrance a few weeks early. Our goal is to make sure Lily joins us in February and not in January. We'll see if she's going to listen to us or not. The doctors have continued to stay positive about her heart condition and now believe it may be possible to utilize the right side of her heart. Basically, they are hoping that either with either heart catheterization or with open heart surgery they will be able to repair the surroundings of the right ventricle (and valves) enough to make them usable. They still will not now this for sure until Lily is born and they can do an ultrasound directly on her. For now, it will be more waiting, wondering, and praying for Emily and I. Until then, we will continue to prepare for Lily's arrival as best as possible. Basically that means Emily will continue to shop for wonderful new outfits that Lily "must" have and I will continue to put baby gifts together. Check back again for more updates later this week.