Eli 1 Year Heartiversary

This gift of a new heart and a new life couldn't have come at a more perfect time. Eli was weakening, lifeless. So many options, whispers of what was next. The time was coming to make some very important decisions. As parents, we knew at some point, this would happen soon if a heart did not come available immediately. I remember leaving his room that day to go pick up Lucas, November 7^th around 4:30. I had just received the new Listing Status 1A letter at 4:00. I couldn’t believe we were on the list, again! Arriving home after picking up Lucas, I went about my night. I was drained, exhausted, emotional and hopeful. Then, at 8:26 the phone rang. The call. It still feels like it happened yesterday. The conversation I had with Dr Ryan was quick, I couldn’t get off the phone fast enough to call Danny and my family. At that moment, my heart smiled. We rushed to the hospital to spend our final hours with Eli, before going into the OR at 7:30am. Eli was only listed for 4 hours and 26 minutes, when we got the call! This is one of THE quickest, list to call, they have ever had at CCHMC.

One year ago today was and will always be a very memorable and special day. On this day last year-November 8 2013, as many prayers across the world were being said, we said a tearful but joyful goodbye. Sending Eli into the OR to receive his new 'Angel Heart'. As the OR staff rolled him away, Dr Bryant promised he would take good care of him and felt like this heart (which was on an airplane coming from who knows where) was a perfect match for Eli and that his surgery would go well. Hearing his words and knowing that the man above would be with him through his surgery. We were comforted through the rest of the day as we patiently, yet anxiously waited to see him again.

We will also always remember the sacrifice and charity of our donor family that give him a second chance at life. Because of their gift to him, we were given a new beginning, a new life.

 

Eli is a very special child of God and he came into this world fighting to fulfill Gods mission here on earth. His strength continues to amaze me each and every day, especially with all he has been through so far in his short life. He inspires everyone that knows him and even people that have never even met him, but that know of his journey. Eli has completely surpassed all medical expectations, which makes it very obvious that our heavenly father has a special and important plan for him. He has taught us so much about faith, prayer, and hope. He has taught us to appreciate the little things in life. He has taught us to enjoy today for you never know what tomorrow may bring. He has taught us how priceless life is and to never take it for granted!

Eli is loved by so many. He is loved more than words can express by his parents and his sibling. Along with the challenges, his journey has brought our family more joy and blessings than we could measure or count! Friends, family, neighbors, and members from churches have served our family in so many ways. We have been shown endless compassion and love for which we are very grateful! Through this our family has learned to look for ways to show compassion to others and especially to other children born with disabilities.

We know we have said this before, but we want to tell you again.......We feel privileged to be Eli’s parents. He is a little man full of spunk, patience, and unconditional love than most of us. We know without a doubt that he is a valiant spirit sent here by our Heavenly Father to teach us many lessons. Because of the kindness and selflessness of our donor family (who we still haven't had the opportunity to meet....but hopefully someday we will) we will get to learn many more lessons from him in this life. We will forever be grateful to this family and still pray daily for their comfort.

Happy 1st Heartiversary EJ!

The letter

Dear Donor family 

That name seems so cold considering the role you now have in our life. You have saved our sons life. We've thought about you a thousand times in the last 9 months. We've wondered how you are coping. We know you miss that smile, tiny voice, and presence. And yet a part of your baby will be here, forever united, to our family. Your child's heart. Eli's body. Working together to give him life. The gratitude, love, sorrow, guilt, and joy in our heart is all we are able to cope with, for now. We want to remember that it is your amazing family that gave our son a chance at life. We want to let you know how grateful we are for this gift. We want you to know that every day you are thought of and loved and remembered by our family. Your gift to us will never be forgotten or treated lightly. While your child's moments of this life were cut short, we want you to live them all within our sweet Eli. Thank you will never be enough. It will never say what we feel in our hearts. It will never suffice for how we feel towards you and your family. We hope to take you with us on Eli's journey from here on out.

Thank you for giving our son this life.  Thank you for your perfect heart. Our son who was once half, is now whole. 

Bless you, 

Danny Kelcie Lucas Eli 

Indiana 

Happy 1st Birthday, our sweet Eli.

My water broke at 1pm. Your brother witnessed this happen on the hospital floor. We had been inpatient at Good Sam since July 8th. You were already causing trouble. Contractions were coming, and coming fast. I was scared. I was not quite sure how this labor would go compared to the labor with your big brother. Boy was it easy! Epidural went smoothe and mama finally got to relax. Somewhat. Daddy had the tablet ready to go, so we could record your birth in case we never got to see you again...we had to prepare for the worst. We just didn't know. You were born at 7:35pm on July 16th, 2013. You weighed 7lbs 10oz and were 21.25 inches long. You took about 15 seconds to cry once you were out, and quickly wisked away to get checked and clean. A slightly blue color, but not as bad as we expected. I wasnt able to see you for what seemed like an eternity. Doctors were everywhere and daddy was able to be by your side the entire time. Once you were clean, I was able to have a moment before you were being taken away to CCHMC. That was the hardest part. You were born and taken away. I held you for the first time, 5 hours after you were born. I spent the first night of your life, away from you. Daddy stayed with you until I was discharged from good sam hospital. CCHMC, is where you would spend the next 5 months of your life...

Happy Birthday, to our sweet Eli.

So scared, so nervous, so excited, so sad, so happy, and so ready. We didn’t know what to expect. What we knew for sure, was that we had a baby we have loved since the day we found out we were expecting again, November 14th 2012, no matter what. We knew you had a serious heart defect. We knew that you would be fighting for your life, from day 1. This day, one year ago. No for sure way of knowing how long this fight would last. Would you be strong enough for surgery? Would you even make it through surgery? Would we hold you right away? Would you ever come home to meet your big brother? Would you walk? Would you talk? Would you celebrate your first birthday? We knew we had to trust in our God, to take care of you, and that’s about all we knew.

One year ago, we didn’t know you. You are so sweet, able to overcome anything thrown your way, so determined. You are such a fighter, and we should have known how much fight you had in you from day one. I should have known from the start, you would not back down from a fight. This fight, for your life, every day.

What a fight you have faced. 3 open heart surgeries, many cardiac caths, multiple intubations, multiple infections, 149 days in CCHMC, appointments, therapists, baby checks, vaccines, teething, helmet gear. Through it all, smiles and giggles, learning to roll. Learning to laugh, clapping, kisses. A smile that can melt your mama’s soul! Such a joy to life, more than we could have ever expected. We could NOT be any more proud of you, our sweet little Eli.

Your fight is far from over. Your new heart remains only so good in your body for so long. Estimated to have another heart transplant in your twenties. Will you want it? Will your current new heart, last that long? Will you be married at this time? Will you have kids? Will you have even gone to college?

But today, on your first birthday, we rejoice in the moment of your life right now. We love that we can worry about you eating your own dirty feet, instead of catching a deadly illness in a hospital. We love that we can be annoyed with your screams in the middle of the night for milk, instead of someone else getting up to tend to you while you are hooked to a ventilator machine. We are so thankful that we can enjoy all of these things. Today. Life is so good to you right now, and we are forever grateful for that. So much hope for your future, our sweet Eli. We hope and pray for many, many more birthdays with you, celebrating the miracle that you are.

Everyday, we rejoice in you. God has given us such a gift. You have taught us so much about life. We love you so much and you are our brave little heart warrior.

Happy 1st Birthday, our little miracle. We love you.
Mommy, Daddy and Lucas.

We also want to say that we cannot forget our donor heart family. They are the very reason we have Eli today. The unselfish act they chose on Nov 8 2013. Please pray for that family as they are also still healing from this journey. A journey for them, that will take much longer to heal.

Dear Donor,
That name seems so cold considering the role you now have in our life. You will save our sons life. We've thought about you a thousand times in the last week. We've wondered how your family will cope without you. We know they will miss your smile, your voice, your presence. And yet a part of you will be here, forever united, to our family. Your heart. His body. Working together to give him life. The gratitude, love, sorrow, guilt, and joy in our heart is all we are able to cope with, for now. We want to remember that it is you and your amazing family that gave our son a chance at life. We want to let you know how grateful we are for this gift. We want you to know that every day you are thought of and loved and remembered by our family. Your gift to us will never be forgotten or treated lightly. While your moments of this life were cut short, we want you to live them all within our sweet Eli. Thank you will never be enough. It will never say what we feel in our hearts. It will never suffice for how we feel towards you and your family. We hope to take you with us on Eli's journey from here on out.
Thank you for giving our son this life. Thank you for your perfect heart. Our son who was once half, will now be whole.
<3

Breathe Kelcie.

I've been so busy with life that I haven't had anytime to post. Time is definitely catching up to me and most days I forget to even brush my hair. Throw it in a pony and go. Seems to be my routine lately. 

Let's see...Eli has been doing amazing. Therapy once a week now along with a few other appointments. His extensive hearing test is Thursday and we can finally have a clearer answer to what exactly he is developmentally behind in. This hearing loss could have a major impact on how we move forward with his therapies. 

He is eating very well. Baby food 1-2 times a day with 6-8oz bottles all day long. He is a hungry growing boy. Still on allecare formula but will be switching to vitamin d milk for good! I'm excited to have a normal smelling baby instead of gross formula permeating from his skin. IICK. I HATE IT! 

We now have 4 teeth. Finally! These top 2 are rough. Eli is struggling but I am glad they finally came! He is going to be so dang cute :)

Most days I can get by with no emotional episodes. Depends on the day. I see newborn babies and just stare. Like I never knew what it was like to have that newborn baby feeling. But I do. I had Lucas. We had an amazing first year with Lucas and now he is 3! Eli, is a different story. I don't expect anyone to fully understand what it's like but parts of me never felt like I was a mom for 5 months. I just watched my baby from a hospital bed and prayed one day I could be half as strong as he was. I try everyday to thank God we are where we are because their are those less fortunate. They have lost children to severe heart defects and never were able to take them home or hold them like I can hold Eli now. I am very grateful, don't get that twisted. 

I just struggle. I struggle with development. Seeing younger kids more developed and bigger and more alert and acting true to age. I want that so bad for Eli. I dread being around other kiddos solely on comparison comments. I cry everytime I see a Facebook post of other friends babies wanting to crawl or sitting up that were born months, many months after Eli. I know...I know. You don't have to tell me. Eli has been through a lot. He's doing awesome for where he is at and how he got here. I KNOW! I try to tell myself that everyday. 

But I struggle. I'm entitled to that. I just wish things were a little easier for eli...

And for Lucas, to be able to have a 1 year old brother who could play and chase eachother around the house. 

And for Danny who has to deal with me and all my emotional and crappy days. 

And for myself. To just be thankful I even have Eli to write about. 

Xoxo 

Rally! Rally!

In our 5 months at CCHMC, your support and generosity was extremely overwhelming. We are so grateful and appreciative of what everyone has done for us and our family. And you still continue to show support for Eli. One of the hardest things during our five months stay was our financial status. I went back to work early and Danny continued work full-time the entire time Eli was in CCHMC. We always feared losing our home, our cars, and our insurance. Your amazing support help to prevent that. 

I posted a few weeks ago about a friend that has a baby with a heart defect. Today she has informed us that she has been let go from her current position. She is officially unemployed at 37 weeks pregnant. Her employer has forced her to take her leave early, as an unpaid status. This is heartbreaking for me. While I was fortunate enough to have time off with both of my children as paid leave, not everyone gets that chance. Sarah has one daughter and baby Chloe on the way. Her medical costs will start piling up and she will start wondering where her next meal will come from. I cannot even fathom what I would do if I did not have the means to get my child food. So this is why I'm posting. 

You all were so generous with your donations and support for Eli, that I'm asking you to match what you donated for baby Eli, please donate for baby Chloe. Baby Chloe has her own page to follow, i've attached the site where you can make donations and follow her page and her upcoming heart surgeries. 

http://www.gofundme.com/8z4jk8

Please just take five minutes-$5 dollars and donate to this precious little baby and her family. This hits very close to home for me knowing this family and what they deserve. They deserve support. 

We went into Eli's situation financially stable and while we never became unstable, it was a very big fear of mine and it still is knowing that his medical bills are piling in. Sarah's family needs our support and a little less fear. 

Thank you for any donation that you can give to her and her family. 

God Bless all of you. 

Kleckner family

Making strides.

I have been thinking about how people stare at Eli, or react to him. I find that at times I have been dissappointed, sad, and suprised. Since Eli's diagnosis, I have made a few friends with similiar challenges and have found those friendships to be strong because of our shared experiences. These people have been supportive in more ways that I need and I am extremely grateful for. This quote (found on pinterest) couldnt be more accurate: 

I am a special needs parent. I have very special needs. I need you to be there for me. I need you to be there for my family. I need you not to pity my child. I need you to teach your children acceptance. I need you to listen when I need to talk. I need you to not judge me. I need you to understand why I dont always call. I need you to be my friend. I am a special needs parent. I have special needs. 

I have had several people come up to me in places asking if eli is ok. The helmet sure does attract attention to those not familiar with the medical field. Then, they question why his eyes are the way that they are. It doesnt really bug me, but that is a pretty curious question. I would do it myself if the roles were reversed. I dont mind people asking becuase it means they are interested. I also dont mind stares if it isnt for super long, and a question follows. 

Many of you on Facebook write me often to encourage me, those that comment on pictures of Eli and say how handsome he is and special, that try to be involved. You dont understand how much I truly love and cherish all of your nice replies. If you love my son, I will love you even more back. 

I am trying to grow thicker skin, but some days I just feel like I have failed Eli. We have a long road ahead of us with many different areas of Eli's development. He is making great strides, and we are very appreciative for that. 

One day at a time, right?!

Pay it forward! Baby Khloe❤️

Yesterday, it was brought to my attention that a friend just recently found out her unborn baby girl has a heart defect. While reading her status update, I found myself remembering that same fateful day one year ago. I couldn't help but get emotional after reading all the comments people were posting. I've been there. I felt exactly how she felt and there was nothing I could do. I couldn't hug her, I couldn't say anything to make her less worried but I can help take off some of the burden a hospital stay will have on a family. 

Her full name is Khloe Lorraine Hettesheimer, expected delivery date is June 6th and she has an AV Canal Defect, (hole in her heart) but they will not get the diagnosis of whether it is a Partial defect or a Complete defect until after birth.

Sarah and her family are expected to be staying in the hospital with baby Khloe for surgery. You all know how helpful all the donations were to help our 5m stay with baby Eli. 

We are asking that you take $10 out of your wallet and buy one gift card. Food, gas, anything will help. I remember getting these very same things in the mail from all of Eli's supporters and just thanking god that someone was so kind enough to do this for our family. What a blessing it was to not have to worry about what meal we were going to eat or how much gas we had to get back and forth to the hospital. 

Please consider helping this family, as you all did for ours. 

All gift cards can be sent to the following address: 

Sarah Hettesheimer 

3115 Urwiler Ave 

Cincinnati, OH 45211

God Bless you all 

Xoxo

Kelcie 

Fundraisers

Over the past year, since finding out about Eli's diagnosis we've had a handful of Fundraisers and one benefit. I wanted to write a post explaining why we do these things and recognize those who have taken the time to organize and support us during this time. 

(If I have forgotten someone please email me and let me know, I did not forget you on purpose, it's been a busy year) 

Tshirts, wristbands, Car decals, ornaments-Kelcie 

Bake sale-Chelsey Richardson 

Flash mob Eli-Alicia Courtney 

Photo shoot-krisandra 

Eli's HLHS journey Benefit-kleckner and Hensley family and many more 

Pampered Chef-Emma Newman 

Zumba for Eli-Jen Clendenning, Lindsay Kinsinger, Ashley Dawson

Lapel elementary-Mrs Sturgeon 

Rummage sale-Knepp & Washmuth family 

Popcorn palace-Kelcie 

Tshirt Donate Life-Booster site  

Lawrenceburg High School Basketball program-Brad Cutter

Donations-many many many people have donated to Eli's fundraising page. We are so appreciative for what you've done in honor of our baby boy. Because of you we have not had to pay for any of Eli's medical needs out of pocket. 

Eli is covered under my insurance through work. He was covered by a secondary insurance Medicaid but in January they dropped Eli due to having too much of this fundraising money in his bank account. They consider this to be an asset to Eli and determined he didn't need medical coverage anymore. Now this coverage picked up anything that my insurance did not cover. So you can imagine how vital this is to our family. For example, 2 of Eli's rejection medications that he well need for the rest of his life, were $1035 for one refill. Eli is on 12 medications. You do the math. We have reapplied for this coverage and are currently waiting for an answer. Until then, we are having to pay for Eli's special formula and things until the coverage can be picked up again. Eli is on a special formula to help him grow grow grow and keep up with his age and curve scale. 

We have also had to have some appointments and medical necessities outside of Eli's transplant. He has vision problems and will need a helmet to correct the shape of his head due to laying immobile for 5 months. Eli's helmet cost over $3600. Because of you, we could pay for that. Without the Fundraisers and benefit, Eli would have to live with a misshapen head and you can only imagine the pain and suffering he would endure later in life. 

Thanks to all of you we were able to pay for this with all of the money that was donated and raised from the above events. We are so very appreciative for what you have done and couldn't have gotten this far without all of your support.

So when you see me posting a new link for Eli, there's a rhyme and a reason to every fundraiser, every donation, goes to help our little boy live his life and keep taking the medications to keep his new heart beating. 

God Bless you all. 

Update. 6 months.

Holy cow. 6 months. Where do I even begin to write all the things going on with Eli and the family. 

Since being discharged from cchmc in December, we spent 10 days at the hotel in downtown Cincinnati until cleared to go home. We had Eli's first Christmas at home together as a family. This was by far one of the most rewarding things to us. If you would have said we would be spending Christmas in our own home back in July, i would have laughed at you. 

Eli had his second biopsy December 26. All results came back 0 which is fantastic. He had some feeding issues shortly after but got himself back on track quickly. 

The new year has brought great hope and excitement for our family. As hard, amazing and memorable 2013 was we are so happy to see it go. Many triumphs and tribulations were experienced and we feel like we overcame so many things. Eli was a blessing. We don't ever want to forget the gift of life was given to us but it also brought a lot of hurt, and sadness and struggle. So 2014 will be our year. The year we celebrate our family as 4. 

I was let go from my position at UC in November. I had just celebrated 6 years. Unfortunately the unit got funding cuts and my position was the first to go. Call it what you may but I was offered a position down the hall in our clinic. I will be there starting in February 4 days a week and continuing to work for the university. I am excited to remain with these people. They have been there for me through everything. From marriages to babies and now all of Eli's medical issues. I am so blessed. 

Lucas will be turning 3 in March. Yeah, I just threw up a little bit in my mouth. How is this even possible. He's our baby! Growing so fast and learning so much. He's been a huge trooper through all of this with Eli and I am so proud of him. He has suffered so much in this journey. Being away from his parents for days on days and shuffled between grandparents is not fair. Everyday I pray that Lucas will one day understand why we had to do what we did. He's an amazing big Brother and I can't wait to have them grow up and be best friends. 

Danny and I have worked out a schedule so that when I return to work we will not have to take the boys into any daycare or pay for childcare. I will work 7-3:30 with Wednesday off for Eli's appointments and Danny will work 4-10. I will pick both boys up from him on my way home from work. We are hoping this schedule will work until Eli can be cared for outside of Danny and myself. One day.

So that's what's going on over here. Enjoying life at home as a family of 4, finally! 

2014 DREAMS.

No resolutions. Just dreams. Dreams don't have to be met. You wish for dreams to come true, so make them. Resolutions sound too much like work. Who wants to work on getting skinny. Dream of being skinny then do it. 

-Maintain a healthy diet. Stop being suckered into just not eating certain foods or drinking certain beverages. Find the right one. Stick it out. 

-Go on a family vacation. Anywhere. Even if it is just a state away. 

-Run a marathon. 

-Grow out your hair. 

-Pay it forward. So many of you have done so much good for my family that I cannot wait to help some other family in need this year. 

-Find a way to make more money. A third income wouldn't hurt right?! 

-Say I love you more. 

-Volunteer once a month somewhere. 

-Get back into church. 

-Pay an extra car payment on both vehicles. 

-Confidence in whatever you do. Start believing you are worth it.