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.

2013!

A year that I don't ever want to forget. But a year that I am happy to see go. I've been tested and tried in more ways than I ever thought possible. But I'm here and I'm doing the best that I can. I know I wouldn't have been given this life unless a higher power saw fit for me. He wouldn't give me anything I couldn't handle. So here I am, handling it. 

I've become closer and stronger with many people from my past throughout this situation. I've lost friends but gained many new ones. I've realized how truly lucky I am to have the family I have. Most of all, I am lucky to have this new relationship with God that I never before understood. He has remained by our side and given us the most precious gift. 

Life. 

So goodbye to 2013 & cheers to 2014! 

Our routine.

We just finished our nightly medicine routine. Which right now includes this. 

We are quickly learning that the post-transplant medicine regimen is a balancing act. The balancing act is difficult, as each patient reacts differently to different medicines. What works for one patient, does not necessarily work the same way for another patient. Eli is on 14 medications. 1 patch, 1 oral wash and 12 meds that go into his NG tube. I posted a few days ago my schedule. I don't think many realize how exhausting it actually is. Let me reiterate. Somewhere in all this mix I still find time to love my other child, eat and shower and play on social media. When going back to work in January, this is gonna be horrific on Danny and myself. 

I will just start at midnight. 

12:00am feed 3oz & pain med

3:00am feed 3oz & pain med 

6:00am feed 3oz & pain med 

8:00am all meds 

9:00am feed 3oz & pain med 

12:00pm feed 3oz & pain med 

2:00pm 2 meds 

3:00pm feed 3oz & pain med 

6:00pm feed 3oz & pain med 

8:00pm all meds 

9:00pm feed 3oz & pain med 

And it starts over....

Sometimes this road requires us to do things that we hate doing. None of us likes to put our child through pain and fear and anxiety. But I would do it…again and again…if I had to. I do it because I love him. I do it to keep the sacred gift inside his chest beating as well as it has been since he received it. I do what I have to…just like so many mother’s of children with CHDs. And in doing so, I find a strength within myself. No mom should have to do this…but sometimes, we have to.

Xoxo 

Struggles.

The past few days have definitely been trying! I haven't had the energy to sit down and write full posts, but it's been a rollercoaster, a few steps forward-a few steps back. 

I feel so blessed to have been given this child to nurture, given the opportunity to watch him grow and become this little person of his own. Each day is a day for giving thanks; I'm reminded of that constantly, even as we settle into life beyond the surgeries. Grateful for his life, grateful for the donor family, grateful for normalcy, grateful for it all. The unsettled fear of the past year feels, well, in the past, and damn, it feels good. I still take day each day as it comes, still cope with the lingering anxiety of being a heart mama, but it's easier to look forward to his future with hope and excitement.

While all of the above sounds so good and normal. Our lives are far from that. I am torn between the hospital and home. I am away from Danny and Lucas a lot. While I know that in just a few short days. This will all feel so irrelevant, but today I am sad. I hate sneaking by Lucas door in the morning to leave and go be with Eli. I hate that I miss waking up with him or putting him to bed. I miss my son to the extent I can't even be happy when I am with Eli. No mother should be torn between her children. Making one feel less loved or wanted was my biggest fear in all of this. I don't feel like Lucas resents me or is acting out but I feel guilty. All the time. While Danny does an amazing job juggling Lucas, 2 jobs, and the house. I feel less like a mother and a wife to them. I just come and go. So quickly and quietly. I've struggled lately with balancing my time between the boys. I've been very irritable coming down this final stretch of Eli's stay in the hospital. I know 5m plays a huge part in the process but I just feel like I can't catch a moment to just breathe and be okay. While everyone is being so supportive and helpful, I am in total awe of the love and generosity you have given us. The cards, gifts and messages have been overwhelming. We couldn't have gotten this far without all of you. 

Many of you are still asking what you can do to help us. Eli is back to wearing normal clothes. So any you are able to donate would help a lot. He needs sizes 6m and up. 

Gift cards to restaurants. 

Kroger gift cards to buy groceries for the hotel. 

Anything to keep Lucas busy in the hotel. Toys, books, balls, movies. 

Thank you all

Xoxo