Trauma.

I decided it was time to update. So many events have occurred within the past few months that I just haven't had time to post. Or breathe. Sometimes shower. 

I guess we can start off by saying how we had an amazing new year. It started off really well with Eli. We got through winter with mild sickness, no trips to children's or the pediatrician. 

I left UC at the end of January. Probably one of the hardest things I have done while being down here. They were my family, away from family. I started UC at 21. I got married, had children, went through losses, even a heart transplant. Many memories and so grateful for what they did for my family. 

But better things are ahead. I began my new Mercy position on Feb 9. It's definitely more than what I anticipated I am extremely busy but that's good right, keeps my mind off Eli or the worries we heart moms go through when we have to be away from our children all day. 

So then came March 2nd. Eli went in for his annual heart biopsy. A routine cath and procedure he has every 3-4 months to check for rejection. During his procedure Eli did not like the catheter when inserted into his right coronary artery. It caused a "tickle" and Eli's heart rate went from 100bpm to 2bpm. They had to do chest compressions for 30 seconds to regain a strong heartbeat. He recovered well and we went home the same day. 

Eli had an ok week. Off and on crankiness but nothing too serious. Friday he spiked a fever of 102.6 and was being treated with Tylenol every 6 hours. It would come down but spike back up. So we carried out the weekend and cardiology knew what was going on. We had a plan to continue the Tylenol and if other symptoms occurred we would go to the ER.

Monday was a complete turn around. I dropped Eli and lucas off around 8am at the sitter. Eli was still battling a 102 temp. He slept most of the day but his demeanor and progression were declining. I got home around 4:30 and immediately knew it was time to take Eli into the ED. His color was very pale and grey, his breathing was off and his body was weak. He couldn't keep his eyes open or his head up. I have never seen him so lifeless since getting his new heart. I was terrified. 

I got to the ED and we were about 12 deep in line to be checked in. Danny called me while I was waiting and I was explaining what was going on. I must have been talking just loudly enough for a nurse to come over and ask me if he was ok. (Remind you, Eli isn't keeping his head up, his eyes are rolled in the back of his head and his arms are flailing out to the side of his body....it looked like I was carrying a dead body). She immediately took me to the front and got me a sticker and we headed to the trauma room. 

Here is where I lose myself. Even supermoms have a weakness. Mine is when your child is taken from you and thrown onto a table, clothes ripped off and about 6 people shouting diff things at once. I can comprehend most of it, but in the moment, you're blank. You just can't think of anything else. I can barely see his tiny toes through arms and bodies of other people. While trying to give reports to about 3 doctors and explain the current events over and over again. 

I was able to stand by Eli most of the time in the trauma room. Trying not to blend in with the other nurses and staff, because I still had my scrubs on from work. Once Eli was stable we were moved into the CICU. Our home for so many months before. A barrell of emotions run through you being back in a place like this. When death has knocked at your doorstep so many times, it's hard to have any emotion when so many things are still unknown. 

That's where we are. Eli had 104 fever when we were admitted. It has came down but returned. Many tests have been ran and we are waiting on results. He is currently on monitors and his heart is okay. His doctors should be around shortly to update me on what we do next. 

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?!