Disrespectful.

It was brought to our attention that there were some issues with people believing that the donated money was going to our 'family' and not Eli. Eli has his bank account that I have all of his donations in and sales from wristbands, and tshirts. That is something I have personally done myself. We have opened another account for the benefit to directly deposit the funds into which will cover any medical expenses eli has which includes the medications he will need for the rest of his life, food and lodging for us while we are unable to live in our own home (which I remind you we still make a house payment on every month). We do not go out and spend money, nor do we go out and shop, nor do we go to dinners unless they are gift cards given to us as a donation, we don’t get groceries because we don’t live in our own home. Danny works 5 days a week, as do myself. Lucas spends nights away from his mother and father so that we can give Eli the necessary attention he needs. I don’t care what anyone has to say, we know what we are doing for our son, and it’s the best we can do given the situation. I still have to provide for my family. Danny still has to provide for our family. We cannot be at the hospital 24 hours a day, 7 days a week. I am there every morning, every lunch, and every day when I get off work. The negative attention this whole situation has been brought upon us, is horrific. To think that this is a profit, is beyond disrespectful and we will not tolerate it. If you do not wish to be a part of this journey, then so be it. We are sorry that you feel this way about or family, and personally, as individuals. We are sorry that you don’t want to be a part of our sons journey. We will pray for you. With that being said, we THANK those of you from the bottom of our hearts who have donated to Eli. You have given us a head start in prepping for his first trip home, LIFE LONG medications, necessary items to keep things clean for him so we dont have to make him live in a bubble, clothes that he can wear with all of his IV lines and feeding tubes, gas cards you have given us so we can make the trips home to be in our own home for periods of time, restaraunt cards we have used over the past few weeks so we can eat good meals, instead of hospital food. People like you, help us carry on.

Another bump.

As I write this, we've been here in the CICU for 103 days. It's hard to fathom what we should be doing. Sitting at the table on a Sunday night, eating dinner with our 2 year old & breast feeding our 3 month old. I should be changing diapers and buying new clothes for the holidays. Watching football with my family and going to the pumpkin patch. Picking out costumes for the boys and taking them to the neighborhood houses. 

Instead I have an empty spot in my chest that longs for the feeling of having a new baby. There's an empty room with an empty crib. With a door that's always closed. (Michelle couldn't have said that better)! I don't know what it's like to rock my baby to sleep or play on the floor with my boys. 

103 days in the CICU is a long time. A long time for a sick baby, a big brother who doesn't even know what it's like to be a big brother, a father who wishes he was playing ball with one son and rocking the other, and for a mother, who so desperately holds it together, but feels like her whole world is falling apart. 

Eli remains on the breathing tube. We haven't seen a smile in a few weeks, we've never heard a laugh and a silent cry is how we know he's hurting. We haven't held Eli in 48 days. A touch that seems so foreign to us as parents. 

Today we've received probably the most devastating news in quite some time. Eli has been taken off the transplant list. A bad blood infection and NEC have stopped us in our tracks to a new heart. We pray Eli recovers quickly so that he can get back on the list and in route to a new heart. 

We would never know if a new heart came while Eli is unlisted but if so, we pray that God knew what he was doing and somewhere else, someone's Eli, needed it more. 

Xoxo 

WANTED

Due to Eli's picc lines in odd places on his legs, and his oxygen in his nose, we are unable to dress him in certain outfits. The following are what we need!!!

Snap up legs and chest

Sizes 3-6, 6, 6-9 months

Hats 

Socks 

Do you have any you would like to send us! We would really appreciate any you could pass down to Eli while he remains in the CICU. 

22562 state line rd 

Lawrenceburg, Indiana 47025

Thank you! 

It's here.

My hands were shaking, palms were sweating, Heartrate increasing...paper cut. Dammit. I opened it too fast. 

The letter. The transplant letter we've been waiting on. Eli's official listing status. He is considered 1A! This is by far the best news in quite some time. If we've gotten to this point in transplant, this is by far the best place to be. Eli has to remain stable and in good health to keep him in this status. Any infection, stroke, neurological deficit could make hmm inactive and he would go straight to the bottom. This is very important. We need all hands on deck to keep Eli well! 

A phone call will be next. That's all we need. A phone call, telling us they have a heart. So we pray. We pray for that family and for safe travels with the new heart. Wherever it may come from. 

So here we go. The transplant journey has officially begun. Are you ready!? 

We wait.

I would be lying if I didn’t admit that all this hit me. I feel sick to my stomach. We went from getting ready to fix Eli's heart because he was doing so good to needing to list, NOW. The docs wanted us to be very clear on the fact that Eli's heart is MUCH MUCH sicker than any of us had previously understood. Every one of the members of the board today said they would list immediately.

Eli will be listed at Cincinnat Childrens Hospital. We won't know his official status until Thursday. What that means is this...1A is for patients living in the hospital and basically being kept alive by intravenous drugs and machines. 1B is the next status level, critical but not living in the hospital and not on IV drugs. In addition to being blood type A, that means Eli is eligible for an O TYPE OR A TYPE heart that comes. B TYPE is not a match. Eli will need a heart the ages of 6 months or younger. They feel very confident that he will have a new heart fairly soon after listing. The average wait time for a heart is 3 months. Eli will remain here until this happens. Keeping him alive is what's next. Getting a heart is after that. We have no other options now. We have transplant. If one does not become available and Eli starts to do worse. Some very tough decisions have to be made. Eli needs a new heart. Point blank. He cannot survive with what he was given. 

So this is where my next few paragraphs are hard to read...the flip side. 

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

Transplant.

We've handed our child over into the hands of capable physicians and God twice now for open heart surgery. I’ve watched as he was taken beyond the line that separated him from us and felt the awful pit in my stomach and waited with the knowledge that I can’t do anything for him. Turning your child over to a physician for any medical procedure is hard; turning your child over for a life-threatening surgery is something I don’t think I can put into words.

Heart Failure. It feels every bit as scary as it sounds. In Eli's case, there is no cure, no recovery, no magical pill that will restore function. His heart is failing. I’ve wrapped my head around it. It took a range of emotions. From shock to disbelief to fear to anger to gratitude and every emotion in between. The first few days I couldn’t even say the words heart failure. We just told everyone his heart wasn’t working too well or that he had decreased function in his ventricle. I can say it now. Others my not be ready to hear it, but I’m his mom and I have no choice but to accept it and move ahead, looking to the future. 

Yesterday we began the process of “getting on the list.” We still hope to have a bit of time before Eli actually needs a transplant but, his docs all feel that now is the time to get this process started, and not wait until it is an emergency situation. Although we have been told he is very critical, no one really knows how much time until his heart just gives out. Instead of waiting for that to happen, getting him placed on the list will give him a better chance at getting a heart and not just a heart, but a perfect match.

Monday we will meet with a few people. Few of them being the transplant pharmacist, social workers and financial advisors. 

Lastly, we had a bunch of labs and blood work drawn to test all the things they need to know about his heart and blood to get him on the list. He still needs a few more tests, but is more or less moving towards the direction of getting listed. That should do it. From there Eli will be presented to a board of cardios and surgeons. If all are in agreement that transplant is the best course of action, he is presented to the team who decide who gets listed and who doesn’t at Cincinnati Children's. If he is approved, he is listed, and the days of living with his half a heart are numbered.

It has been said that a journey of thousand miles begins with one step.  We are taking this journey One. Slow.  Step/Day. At. A. Time.

Fridays are not Eli's favorite.

Today was a very rough day for Eli. Probably one of the tougher days since his emergency shunt revision back in July. You know, at 17 days old when his shunt clotted. Ya that one. I know, the status updates every day make all the past events seem irrelevant. Today was a day with no end it seemed like. For a quick recap the day kind of went like this. 

My morning visit was ok. They had thrown at me that Eli needed an extensive brain MRI. Which was supposed to be around 1. This was to take an scan of his brain for any nerological issues he may have. We've had some concerns. Well that quickly turned into being rescheduled to Wednesday. I went to work and called a few times to see how he was. I left an epic training early to go back and check on him and get an update. Call it a mothers instinct but I managed to walk myself into another episode like last week. Many people hoarding his room and doing things I know were not on his schedule for today. Things quickly escalated but settled out. I managed to go get food and go back to work. I came back and that's when Eli took his heartbreaking turn. His body got very cold. ICE COLD was the description. The profusion of blood to his body was very poor. His lungs were taking on a load that his body was having a hard time balancing. His heart function was severely depressed and he was getting sicker by the minute. His pulses were hard to read and getting an arterial line in to measure his blood pressure was very difficult. At this point Eli's lactic acid had sky rocketed into a 13.8 level. They weren't very optimistic at this point that Eli was going to recover on his own without the heart/lung machine. With his poor profusion, opening him back up and putting him on the bypass was our best option. We needed to get one more lactic level before we made this decision. In the midst of all of this, Eli's surgeon called the transplant team and made them aware of how critical Eli was and that we need to get things moving ASAP. The lactic acid trended down to 7! It was a huge relief. Bypass was taken off the table and Eli began to recover slowly. His body warmed up and his coloring came back. His pressures were stable and he began to make progress. As I sit here and type this, his levels are stable and where they want him to be for the next few days. Keeping him comfortable and maintain his pressures until Wednesday. His MRI of his brain will tell us his status for a heart transplant. Wait. What?! Eli's brain function has to be in good condition in order to get a new heart. Crazy huh? Very. But that's where we are. 

So many new things and literally taking each day one day, at a time. We have too. Eli has his own agenda. He basically tells me what my daily routine is. For example. 

He tells me where to sleep, Ronald McDonald or his pod. 

He tells me when I can go eat, when his saturations are between 75-90. 

He tells me when I can go to work, when I need to leave work and when I just shouldn't go at all. 

He tells me when I can take a picture which is when he's feeling ok.

He tells me to put away my phone when he's not feeling ok. 

But here's the thing.

I tell Eli, I will sleep wherever he needs me. 

I tell Eli, I will eat when it's necessary. 

I tell Eli that I have the best job in the world and the most supportive coworkers anyone could ever ask for. 

I tell Eli he's gonna hate me when he's older for all the pics I do take. 

I tell Eli that even at his sickest, he's the the most beautiful boy I know. 

And most importantly I tell Eli that we will never, ever, give up on him. 

So for tonight I leave with you this picture. His eyes tell his story. So pay attention. He may see something we don't.