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

A good place.

It's been a very emotional year, a very hard year, a very amazing year. And it is so comforting to have it behind us. There's something about these next few weeks that are so huge to us, as though the first year is the hardest struggle with heart kids, and here - we are making it! We made it to December! And he is fantastic! It feels like the toughest, most fragile days are behind us. I know that might not be the case, but I'm hoping it is and that he sails through the next steps and we have so many, many more good days ahead of us. He's on a good path, good weight gain (we broke 12lbs) good heart numbers (we have sats in the 90s all day!), a little behind on milestones but we will get there, may need a helmet to fix his left side cranial hematoma but that's normal for a baby like Eli who has been in a bed for 5 months and 4 of those with a breathing tube, and just the happiest, most smiley little man. We couldn't be luckier. (Knock on wood. Please.)

Now we just wait. We have lots going on over the next few days to prepare for his discharge. A 24 stay with Eli before we leave the hospital is required. It will give Danny and I a chance to prove we can do this, together. Once Eli is discharged, we go to a hotel until his second biopsy on December 26. Yes, after Christmas. Once those results come back, they will look into letting us go home or stay longer depending on the level of rejection his may or may not have. We are so happy all of you have stuck with us over the past 9m since Eli's diagnosis. A true miracle happened right before our very eyes. 

Xoxo 

What's next.

A question I've been asked numerous times over the last week. 

Eli will remain in the CICU until his first biopsy on Nov 27. This biopsy will tell us if Eli is accepting his new heart. All signs point to yes, but we don't know for sure. 

Once the biopsy comes back and all is good. We will be moved to the step down floor. Here, we will learn how to care for eli more and be able to do normal things with him. We do not know how long he will remain on the step down floor. 

Once they feel he is ready to be discharged. Eli will be sent to a hotel nearby the hospital for the remainder of the time required. He has to remain around the hospital for at least 8 weeks post surgery. So that puts us towards the middle of January to go home.

A hotel? Why not Ronald McDonald? Well we live fairly close to the hospital as it is. So we were only able to get a room at Ronald McDonald because Eli was so critical and remained in the CICU. Once we leave the CICU. We don't qualify to stay at Ronald McDonald anymore. The hospital will pay for a hotel but it's just another inconvenience Danny, Lucas and myself have to work with. Our schedules are already crazy. Throwing a hotel in the mix just doesn't sit well with me. 

So that's the plan. Can you believe that in just weeks we will be making our first trip home! As a family of 4!!!

THANK YOU x 1000000000!!

I can NEVER possibly payback the hundreds and hundreds and hundreds of people who have touched our lives in the past couple of months. I have wracked my brain, trying to come up with SOME way, ANY way to express our sincere thanks to everyone involved in helping Eli. I have come up terribly short of being able to possibly pay back everyone. I can surrender and just say thank you…again and again and again. I will never stop saying thank you.

The bottom line is, I want to say thank you. I can’t repay you. I don’t even know all of you who have loved and supported Eli, but know that we felt of your overwhelming support. I have experienced a sense of a bit of the weight of the worlds being lifted off my shoulders because of ALL of you! I have always been a believer that the world is full of good people, that humanity is still alive and well in a good portion of those around me. This experience has reinforced that belief. I saw the good in the world around Eli first hand. We can’t repay each of you personally, but we have decided that every year, on the anniversary of Eli's new heart-November 8, we will pay it forward, so to speak. Finding some good to do, reaching out to others who are needing the support and love that we have received from each of you. Your influence in our lives is impossible to put into words, but know it is HUGE. We will take what you have given us, and put it to good use for others whose hearts are broken, emotionally or physically, and attempt to help heal those broken hearts, just like you have done for Eli.

Xoxo 

TRANSPLANT UPDATES

Surgery can be anywhere from 2-12 hours. We will post the updates on this blog throughout the day. Just keep checking. I will have something about every 2 hours. 

7:30 wheeled Eli into the OR 

9:00 all central & IV lines are in

11:33 Eli is doing well, they have not started the actual surgery, the heart has not arrived yet

12:00 they have made the first incision 

12:45 heart is on it's way from the donor hospital 

2:30 heart should be close and Eli will be going on bypass soon 

3:20 Eli is on bypass 

4:30 new heart is in, stitches being placed to put it all together, it's not beating yet but that will come soon.

5:25 ELI'S HEART IS BEATING!!!

7:15 still working on the pulmonary artery, will get an echo once all finished, place chest tubes and close up

10:05 still working on closing his chest 

10:42 TRANSPLANT COMPLETE! We will see Eli shortly. 

15 hours & 12 minutes. Surgery time. 

Thank you all for today. From the innermost being of our souls, god bless all of you for your thoughts and prayers and love and tears. We are WHOLE!

New heart, same journey :)

We were told late Wednesday that Eli's Cath had been moved up to Thursday and last case. Then we got word he was bumped to first case. They day was long but looking back it all made sense. Shelley the transplant lady is what I call her, asked me to meet with her around 3:45 to go over some things. She came by and asked me to retrieve my transplant binder. As I turned around to grab my binder and sit, she was holding his listing letter. I couldn't keep my emotions in. I was ecstatic. We were listed. AGAIN! We finished our meeting and I started the drive back home to get Lucas. We ate, Played and caused havoc. Lucas and I were in bed. I was just telling him about baby brother and his events of today. Then the phone rang. I picked it up and looked at it and the display read Children’s. My heart skipped a beat and I knew immediately that this was the call. I answered and Dr Ryan, the transplant doc said, “Hello!  Mrs Kleckner, Eli's mom?" I rudely interrupted and TOLD HIM TO SHUT UP! Before he could even get it out! I knew. This was it! This was THE CALL! Then I did let him finish, "We have a heart for Eli!"

I felt fear, anticipation, hope, sorrow, anxiety and a whole range of emotions at once. We had about two hours to be at the hospital. My house was a complete, disorderly mess with laundry piled up, dishes in the sink and lucas in his pajamas. But all that would have to wait.

I called Danny, while he was at work. He couldn't believe it. It was so fast. Remind you, we just got our listing letter less than 5 hours ago! We made a few calls to family members and friends. Thirty minutes later, after I dropped Lucas off at Grandmas, we were in our cars and driving to Children’s for Eli's new heart. I didn't want to jinx myself by putting it on social media so I summoned everyone to keep hush until we got final word on the new heart. I wanted to tell everyone so badly, but I just couldn't. Not yet. Things for us always seemed to take a bad turn when we got good news. This news, I didn't wanna let go. I wanted to keep to myself but tell those most important to us first. 

I slept on and off during the night, drifting in and out of strange dreams. I couldn’t help but think about the donor family. Somewhere a family was saying good-bye to a special child. They had decided to donate their organs and were now waiting just like we were. But instead of waiting for new life, they were waiting to watch their child leave this life. The thought was heartbreaking. And the thought that in their moment of anguish and grief, they made a choice that would give Eli a chance at life touched me and I came to understand more wholly the meaning of words that most people only casually use, words such as sacrifice and charity.

At 6:30 AM Eli's nurse came in and told us it was time to start moving. Eli was due in the OR room to get prepped very soon. We walked down the hallway to let Eli go. Just like we had with his previous surgeries. We told him we would be there when he woke up and left him in the capable hands of Dr. Bryant and his team.

Eli's surgery went as well as they expected. They honestly thought he was going to give them some trouble but he was perfectly behaved and did very well. Once Childrens gets the call for a donor heart and it matches Eli's criteria, things begin to fall into place. One surgeon goes to harvest the organ by a jet plane while the other surgeon stays with Eli to prep him for the surgery. This was the longest part of the day. Once the organ was in route back things started very quickly. Eli did great. They weren't even done stitching his left side when the heart started beating. Blood flow got through and his new heart just took it fast. His old perfect broken heart was now removed and his new perfect heart was beating in its place.

We experienced a miracle or at least a series of miracles, that have given us a new heart for Eli. The days and weeks and months ahead seem a bit overwhelming. And I have to admit a part of me just wants Eli's old broken heart back. But that wasn’t the path Eli's heart defect would take him. Instead we are venturing into the realm of the broken heart made whole through organ donation. We have bright hope that his new heart will remain whole and strong for years to come.

The next few days are very critical for him. Working on weaning off meds and taking out tubes. They want to be as cautious as possible with Eli. He does not like to be pushed and he will fight back. We know this. He's very well tuned in with his wants and needs and will tell you about it. Next week will be huge in regards to getting him off the ventilator. He has been on it since 9/11. So he may not come off as quickly as they like. 

A lot of you have asked when I will get to hold him. When can he go home. When will things be normal for all of you again. This is a process. Just like anything else with Eli. He will tell us. 

I cannot hold Eli until his ventilator comes out. 

Eli will remain in the CICU for quite some time. A month sounds like a good number to throw at you for now. 

Once he's had biopsies to prove there is no rejection of the new heart, and he's stable with his new regimine. Things will slowly start to move towards getting him on the step down floor. He will spend some time here with Danny and myself and prepping us to be able to take care of him when they are ready to discharge. 

Once we have proven we can take care of Eli, and he is doing really well he will be discharged to Ronald McDonald for a month or two. Eli has frequent clinic visits and biopsies the first few months of this new stage that they don't want him venturing far until he's proven his new heart will work for him. For years. 

So we've got a goal to have Eli home by big brothers 3rd birthday. That is in March 2014. That will be in 4 months. I couldn't even imagine surprising Lucas with his little brother at home. My eyes fill up with tears as I type this. That picture, the one I've imagined for months on months, it's going to be one of a kind. 

Stay tuned. This new heart, same journey, will be one heck of a ride. 

Xoxo 

A heavy heart.

One thing I have learned on this journey with Eli through his congenital heart defect and his needing a heart transplant is that I couldn’t do this alone. I need support. I need to be reminded of how many people love Eli and wish the best for him. We have amazing family and friends but I have also found a certain sense of welcome and understanding in friends I have met here at the CICU. I am a member of a number of groups or pages that offer support to parents dealing with congenital heart defects, and life after heart transplant. Usually those groups offer nothing but the support and acceptance I need, but lately, I have noticed it's not enough. 

I worry a lot over the future and Eli's heart and catching something he can’t fight off. I’m an optimist, almost to a fault. Becoming a mom really put my optimism to the test, especially a mom to a son with heart problems. Not worrying about Eli and his future would be like expecting the sun not to shine or the grass not to grow. I will always worry.  

Tonight I feel a little less worried about how upside down my life is and focus on how great it will be. My heart weighs heavily for another CICU family. They will say goodbye to their daughter Keeley on Monday. Michelle and Matt & the boys have become great friends to us here at the hospital. I can only hope to have the strength they have if ever given their situation. 

I've found this passage and felt that it's fitting for the past few days I've had. 

"YOU CANT DO ANYTHING ABOUT THE LENGTH OF YOUR LIFE, BUT YOU CAN DO SOMETHING ABOUT THE WIDTH & DEPTH. "

xoxo

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. 

Our new normal.

Ever since going back to work I've gotten quite used to the routine we've established for our little family. It almost feels like I've been doing it forever. 

I wake up around 6:15. Get ready for work and walk from rmh to the hospital. The walk to Eli's room feels like it takes forever. I think it's just bc being away from him for long periods makes me anxious. Once I get there we talk and discuss how his night went. He usually gives me a look and then falls back to sleep once I'm done talking to him in that ridiculous baby voice. I'm not 100% sure what I even say half the time but I try. Once I'm done bothering Eli with my jibberish I pump in the bathroom. 

I head to work. I usually stop by Starbucks and grab a frapp. Depends how late I am leaving Eli. I finish walking to work. My work day starts at 7:30. I'm there til about 1130 before I head to see Eli again. We visit for about 20 minutes and then I pump, again. 

The walk back to work is a bit tougher. I hate leaving the little guy. I manage to get lunch in here somewhere and finish the work day. I get off at 4:00. 

After work, I go back to see Eli for a brief amount of time before leaving to go pick up Lucas from Danny at his work. Once I have Lucas we head back to rmh and play and eat. That's where I pump for my 3rd time of the day. We usually walk over to see Eli once. That tends to be around 8:00. After our visit we walk back to rmh and get ready for bed or watch movies. I call and check on Eli about every 2 hours after this point. I usually do my 4th pumping around 11:30. That's all I pump in one day. I can sleep through the night and resume pumping in the morning. 

Danny arrives at the hospital around 1045. He stays and visits with Eli until 12:30 or so. Lucas and I are usually asleep by the time he gets back to rmh but that's ok. Lucas gets to spend a lot of his morning with Danny. Which I know he really enjoys. 

Then, the next day. We do it all over again. That schedule is typical for a Tuesday through Friday. Danny is off on Mondays so he keeps Lucas all day and I can stay with Eli longer periods of time. 

So that's how we live now. In and out of the hospital but making it as normal as possible for all of us. 

We have a plan, for now.

TODAY WE WERE TOLD THAT ELI WILL REMAIN ON THE BREATHING MACHINE UNTIL HIS NEXT SURGERY. THIS SURGERY IS CALLED THE GLEN. IT IS THE 2ND SURGERY OF THE 3 THAT REQUIRES ELI TO LIVE HIS LIFE. THEIR ARE PROS AND CONS TO THIS DECISION. 

PROS.. 

ELI REMAINS WHERE HE NEEDS TO BE. AT CINCINNATI CHILDRENS, CICU FLOOR. 

 KEEPING THE TUBE IN UNTIL THE GLEN PREVENTS FURTHER EPISODES OF REINTUBATION AND EXTUBATION. 

HE IS ABLE TO BE FED BY FEEDING TUBE AT FULL FEEDS, WITH TPN/LIPIDS, MAKING HIM AS STRONG AS POSSIBLE. 

CONS.. 

ELI WILL NOT GO HOME WITH US ANYTIME SOON. 

WE WILL NOT BE ABLE TO HOLD ELI AGAIN UNTIL HE IS EXTUBATED AFTER HIS GLEN SURGERY. 

WE DO NOT HAVE A DATE SET FOR THIS SURGERY YET. 

 THE GLEN SURGERY REQUIRES THESE BABIES TO BE AT CERTAIN CRITERIA. THEY HAVE TO BE ATLEAST 5 KILOS AND/OR 3/6M OF AGE. ELI IS VERY CLOSE TO THE 5 KILO MARK, WEIGHING IN TODAY AT 4.8 KILOS. HE IS JUST 10 WEEKS OLD TOMORROW SO THAT PUTS HIM AT AN EARLY AGE FOR THE GLEN IF WE WERE TO DO IT SOON. ITS LOOKING LIKE THE GLEN WILL BE SOMETIME IN OCTOBER BUT WE ARE UNSURE AT THIS POINT. 

OVERALL, HE IS DOING WELL. ALERT, FEEDING, AND CONTINUING TO GROW AS BEST AS HE CAN. I WANT NOTHING MORE THAN TO BE HOME WITH MY CHILDREN. AS A FAMILY. BUT WE KNOW THAT JUST ISNT POSSIBLE YET. 

ITS HARD TO FATHOM SOMETIMES. I GET CHOKED UP SEEING OTHER BABIS BEING CUDDLED, AND NORMAL, THAT ARE ELI'S AGE. IT BREAKS MY HEART. AS A MOTHER, ITS ONE OF THE HARDEST THINGS I HAVE EVER EXPERIENCED. THERE IS NO BOND BETWEEN US. IM JUST A VOICE HE HEARS. MY TOUCH IS PROBABLY NO DIFFERENT TO HIM FROM THE NURSES THAT TAKE CARE OF HIM DAY IN AND DAY OUT. I AM NOT ABLE TO GIVE HIM THE LOVE AND COMFORT HE NEEDS. 

NOT YET ANYWAYS. 

SO THATS THE PLAN FOR NOW. KEEP HIM INTUBATED UNTIL HIS GLEN SURGERY. WHENEVER THAT MAY BE!

5th intubation

I couldn't get over to Eli's pod fast enough this morning. Danny sent me a late night photo from his visit and Eli was able to wean off his CPAP mask. That allowed us to hold him again! I held him from 6:45 to 9:20. I didn't wanna let go. I wasn't going too. I text my boss and asked for the day off so I could just hold him. And love on him. And stare. And touch. And tell him how much I loved him. And poke his cheeks. And tell him how much he looked like his big brother. And his daddy. And we can't wait to get him home. And to show off his "special mark" to all the ladies. And just that we couldn't be more thankful for him. Our special heart baby. 

But I had too. I had to let go. Again. 

Eli started to turn a different color. This happens when his lungs start to collapse. I had to put him back in the bed and we started the recruitment process. That wasn't working fast enough. They put on the CPAP mask but decided shortly after that we needed to reintubate. FOR THE 5th TIME! I had to step out of the room. I cannot watch this process. It breaks my heart. Even after so many times, knowing what happens and that it's what's best for him. I struggle with this. 

At this point we don't know exactly why this keeps happening. The docs & Eli's surgeon want to meet and figure this out. They want us to be there too. Medical decisions need to be made and as parents we have the right to say no and choose a different route. So we just have to wait and see what they want to do. There are a few reasons as to why this is  happening but we cannot pinpoint any at this time. We're also waiting on some lab cultures from today's events to help us narrow our choices.

So as I know you all will. And you do it so well. Please pray for our sweet EJ. He needs your continued faith and strength. I know I do. 

Xoxo. 

CPAP

Many times I catch myself posting all the medical terms and forgetting that not everybody knows what I mean. I have to rewrite most of my status messages a few times to make sure everyone can understand. Nobody wants to read an update and have to google the entire sentence before they understand what the heck I am even talking about. 

At this point, Eli is recovering well from the collapsed lungs. He doesn't have his ART line anymore and his feeding tube has been placed in his intestine instead of his stomach. This reason is so we don't overkill his belly. The CPAP mask is doing a lot for his lungs and pushing air into his belly so this causes him to vomit. We don't want him to vomit any of his breastmilk so they went ahead and bypassed the belly straight into the duodenum. He will continue to get 2ml/hr for now. 

The CPAP mask is really helping Eli. This is a brief description on why he has to wear this. 

CPAP, or continuous positive airway pressure, is a treatment that uses mild air pressure to keep the airways open. CPAP typically is used by people who have breathing problems, such as sleep apnea. CPAP also may be used to treat preterm infants whose lungs have not fully developed. For example, doctors may use CPAP to treat infants who have respiratory distress. Also, in some infants, CPAP prevents the need to insert a breathing tube through the mouth and into the windpipe to deliver air from a ventilator. (A ventilator is a machine that supports breathing.)

So that's where we are with that. Here are a few pics from the weekend and week. He's holding his own :)

Just another day.

I'm exhausted. It's a different exhausted than I was during the pregnancy with Eli's condition. This is a bit more of a rollercoaster. I just want everything to automatically be okay. Well that's not how things work. There are little things we run into and concerns, and I walk around on edge using all that energy watching all the details and asking the doctors and nurses all sorts of questions, just so I know he's okay. 

We're doing okay. It's been a long few days. I'm hoping Eli has a turnaround and starts feeling better soon, because those sad eyes, that silent cry and not being able to help him, is really breaking my heart. I just want my little baby to feel better again. 

The rounds always leave me exhausted. I don't know if it's the anticipation, the worry, the fear that something's wrong and we'll get wisked right from the CICU into the OR or the ultimate fear that there's something really wrong and they can't do anything about it.

I wish for many things. At the top, I wish for no pain for Eli and in hopes that he just feels love. That's all I can do at this point. 

Lung issue.

Eli was reintubated today for the 4th time. His right lung has collapsed. He's got a possible mucous plug obstructing his airway. 

I had just gotten back to work today. A 5 hour day is better than no day. I didn't expect to leave and go see him so soon. Doesn't make going back for my 2nd day any easier. 

I made it to Elis room first. Danny and Lucas came over shortly after. He and I always talk about how we hate turning that corner to walk into Eli's pod. If there's people standing outside of it you know something is wrong. Today, I saw those people standing there. It hit me. I knew something was wrong. It's the worst feeling. I walked in to them getting him settled back into his bed after having the tube placed back in. So helpless and exhausted. He had worked so hard today on breathing and it just was too much. He started to give up. They decided at that point he needed some help. They did all they could to get that lung to inflate on its own and nothing was working. Putting in his breathing tube was the best thing at that point. 

So that's where we are now. Intubated again. Still unable to hold him. 

9 days and counting since I last held my baby boy. 

Back to work. For now.

Over the weekend I made the decision to go back to work starting September 3. We feel that since there is a good chance  Eli will spend a few more weeks, maybe month{s} in the CICU, I might as well go back and try to get a paycheck. I was going to be taking off September originally with no pay. It's just not what's best financially for my family. 

I work right next door to Eli's hospital so it's very convenient for me to go back now while he is still there and we have the room at Ronald McDonald house. I wouldn't need to drive to work. I could visit with Eli and then walk to work, see him when I get off and throughout the evening with Lucas. It all sounds good now, just hoping I have the strength to be able to do it.

I will resume my leave when Eli gets discharged from the hospital. When that will be, no idea. At this point, we aren't even sure we want him to come home and just to return in a short time for his second surgery.

Very mixed emotions at this point. All I know is that a part of me is ready and a part of me isn't. I want so badly to be a family of 4, in my home. But if he's safest where he is now, then I have to be ok with that too. 

Extubate. Trial 3.

Eli was extubated today, for the 3rd time. He did very well given just 4 days before, they attempted to extubate and he failed. This led Eli to be reintubated and monitored for a few more days before trying again. So proud of the little nugget. He had a rough start but I think we are getting back on track. I feel like maybe all the rough patches are behind us and we can only move forward from here. I hope. I always get myself in a spot where I am so happy with his progress and the bam, something sets him back. I hate it for him. It's a helpless feeling nobody should have to experience.

This weeks agenda is to get him back on feeding on Wednesday. We're hoping the reason his feeds weren't working before was because of the sepsis infection. We will see when he's able to eat again. 

They will begin to wean some of his meds starting Monday. His antibiotic will continue to run for a few weeks. If there is any change of Eli going home, almost certain he will go on antibiotics. The infection really took a toll on the nugget. 

So prayers for a positive week and hopes that Eli progresses! 

Twinkle twinkle. Eli's little star!

A friend posted a blog about dedicating a star to her boyfriend and adorable daughter. This inspired me to do the same for Eli. She's got the best ideas :) Thanks Alissa! 

As we all continue to pray for this little boy, I couldn't think of a more perfect gift! A star, just for him. So when you're ready to lie down and be with those you love tonight, look up into that amazingly gorgeous sky, and think of Eli & his journey :) 

Www.yourstarforever.com 

Setback.

Eli now has an infection called Sepsis. It's a severe blood infection that can be very fatal if not caught in time and treated right away. Fortunately, we caught his sepsis shortly after Eli's oxygen levels started go decrease. The sepsis has gotten to the right side of his heart and is slowing down his ventricular function. This is his good side of the heart. They had to reintubate Eli because while the antibiotics are trying to make him better they wanted to take the breathing work off his heart and lungs so the machine is doing it again until he's strong enough to be on his own, again. Eli now has a wound vac, ART line, central line, foley cath & ventilator back on. His levels have already started to come back up from yesterday which is really good. The doctors are satisfied with the way he is bouncing back from this infection. 

I had a hard time yesterday with Eli being put back on the ventilator. My baby boy was considered immobile once more. My 'normal' things I could do here were taken away, again. There's only so many times a mother can feel helpless in the care for her child. Everyday I feel like I am failing. I just can't do anything for him and it kills me. I can pray and I can tell him I love him. And in hopes, both of them hear me. 

Instead.

41 days in the hospital, and counting. I've had a lot of time to think over these past few weeks. A lot of time to think of how life should be going and, instead, it's going like this...

Instead of changing my own babies diaper, I'm watching a complete stranger do it. 

Instead of waking up in my own home, I'm in a volunteer housing program. 

Instead of waking up to the coos and cries of my newborn baby, I wake up to the pitter patter of the child who has cancer just getting his day started in the room above us. 

Instead of walks at the park with my sons, I walk from Ronald McDonald to Childrens, to visit Eli with Lucas. 

Instead of walking around the house to soothe my baby, I'm attached to a post with 3ft of cord I can't unplug and we have to dance in place to make him stop crying. 

Instead of watching my son on a baby monitor through the night, I watch episodes of family guy to make the night pass by until I can wake up to go see him again. 

Instead of the normal things you do as a family with a newborn, we don't do. We haven't done. It's the normal things you miss. What feels natural to you, feels abnormal to Us. Everything's different. It's a way of life you never thought you would have to experience. My highlight of the day comes from the 3 meetings the docs have about each child on the CICU floors. When they get to Eli, a little piece of me lights up, in hopes they are ready to take him to the next level. Little by little, as that conversation goes, that light dims. We remain in the CICU. How much longer? Will we leave? We can't answer any of these. 

Soon, hopefully. 

She's off.

What a day we had yesterday. Kate officially moved into IU campus. I feel like a total grandma right now. How is she already in college? How is she able to be alone for more than 24 hours with no parental supervision? How is she going to feed herself? How is she going to do her own laundry? She isn't ready. There is no way. Lets just take a moment and pray for Kate. She's gonna need all the help she can get :) HAHA! 

Just kidding. My sister is very responsible. HAHA! Just kidding again. 

No seriously. I'm very proud of her and what she will accomplish over the next 4 years! I pray it only takes her that long. I need glasses soon and I won't be going to any other eye doctor other than Katie James, optometrist. Boom. 

Here's a few pics from our lunch yesterday. I was able to sneak away from Eli for a little while and enjoy some family time. GO HOOSIERS! 

No Step Down. For now.

We had our hearts ready for moving to step down this week, but that doesn't seem like its gonna happen. I've been perfectly content taking it step by step, but in rounds tonight the vibe was off. I could tell they didn't wanna really tell me what they think will happen. 

He's having some reflux issues and his lungs are still wet. They want his bolus feeds perfect before they take him out of the CICU. They basically want him "GO HOME" ready before they send him to step down. He isn't there yet. 

The nurses tell me it's because of all the issues he has had. The blocked shunt really put a delay in Eli's recovery. He's just not ready. I'm not pushing it by any means. I want Eli at his best before they send him away from all of the care they give him here. 

But there's just a point where you break. We've been here for over a month. I'm ready to be home, dinners with my family, sleep in my own bed and wake up to my own coffee pot (that I don't have but will be purchasing soon)! I am going to be taking the month off of September with no pay to care for Eli. The time period between this stage and the next surgery are very critical. I need that time with Eli at home. Eventually. 

With the information we got tonight, taking off September doesn't seem like that will even be enough. Few more weeks in the CICU and then step down. Then home. It's just so frustrating. 

We just want to be home. The 4 of us. 

:/

Eli monthly.

Next step. STEP DOWN.

Lots of changes for eli. Once he was off the vent, things start happening very quickly. He has all of his central lines out, nasal canula and neers are gone. He still has a picc line for meds. They changed his feeds from a constant drip of breastmilk to bolus feeds every three hours. He's tolerating them really well, which is a really good sign. 

Our key to getting into the step down unit is his feeds. Which he's sailing through thus far with no issues. Rumor has it that Friday would be the day. Monday at the latest. They won't transition him to the floor over the weekend. It's just not ideal. Once he's in step down. He's gotta prove himself he can go home. Gain weight off of what they are giving him and hold his own. We're hoping discharged by Friday! 

Can you believe it! DISCHARGE is in sight too! 

Eli will have been in the hospital exactly one month tomorrow! Which is his one month birthday! Ahhhhhhh. Time seemed to be so slow but now its flying by! Before we know it, we're back here again for his Glen procedure in just a few months! :(

Extubation

And he's off the ventilator. WOOP WOOP! 

I woke up today like a little kid on Christmas morning. I have my little babyface back! It feels like eternity since I could see his lips. His full set of lips! 

I know it's about the baby steps, but this is a HUGE step. HUGE! He still has to have the nasal canula for his pneumonia. He will get his feeding tube back in tomorrow and he will begin eating breast milk again. I'm so excited. Can you tell!? 

Eli was down to 2 meds. Heparin and Milrinonine. The heparin goes away tomorrow but gets replaced with injections of lovanox. Those will continue to be given twice a day til his Glen procedure. The other med is for his pneumonia which will go away in a few days. 

We still aren't able to hold Eli. This comes soon. He still has some IVs in that are in awkward places and just makes it uncomfortable for everyone. The last thing We want to do is maneuver one of those out and poor nugget has to have it stuck back in. So we're waiting til he's all clear of needles and we get the go ahead to squeeze him like a pimple! Because you know I will. He's gonna need oxygen when I get ahold of his little booty! 

WHAT'S NEXT you ask?! 

For Eli it's tolerating being fed through his NG Tube. He has only been fed for 2 days out of his nearly month of life. He has gotten nutrients through IV but it was at a slow pace and then taken away because of his blocked shunt and having to basically start over. Once he's able to prove he can eat and hold his own. Step down unit is in our sights. 

This step is a prep for going home. He will get all his IV lines out AND We can be parents! Change diapers, feed him, bath him, swaddle and dress him. Once he proves himself there and we pass our own test of being able to deal with him over 24 hours. He can go home! Finally! And yes, you read that right. We have to show we can take care of our baby! Sounds crazy but I'm thrilled. I can freak out if he feels too warm and not feel bad about it bc I'm allowed haha! This is where we will learn alot about signs and symptoms to look for with Eli. This is a very important part of Eli's recovery. We have to get ahead of his sickness, whatever it may be. A cold, an Upset belly, a bad day! This time is critical. Getting him to the next surgery is our focus! We have to keep him healthy! 

But let's not get ahead, right! ONE STEP AT A TIME! 

Look at this face. I'm so in love. 

Rocky road.

No. Not the ice cream. The official title to our previous 3 weeks. We can't seem to catch any sort of break. No matter how many times we "yell" at Eli and tell him to behave, he bites back with some sort of blip. He takes 5 steps forward, then BAM! 3 steps back! He's fighting through each and every one of them. I can't say that we don't have one strong 3 week old, obviously we do. Just look at this timeline. 

7/16 birthday! 

7/26 Norwood heart surgery 

7/28 closed chest

7/30 first feeding 

8/2 Clot/Shunt revision, re-open chest

8/6 closed chest 

8/7 cath lab procedure 

We have a very strong willed baby on our hands. Today he got aggravated with the RT team when they tried to suction out his lungs. The nurse said she got the meanest look. I will take responsibility for that :) 

They are keeping his lung function as a top priority. He's got an infection and its causing him some issues. Once this clears, they can start prepping him for extubation. He's gotta be able to breathe on his own with no vent! This is a huge step to his recovery. 

My biggest struggle lately has been seeing the calendar days get crossed off. I go back to work in 3 1/2 weeks. (sept 3) I cry everytime I think about it. There is a very high chance Eli won't be home before then. This, for me, is tough. I had a hard time going back to work with Lucas and I was off for 10 weeks with him. This time, I was only able to take 6 weeks off. I had so many doctors appointments that all of my PAID TIME OFF kept getting used up. So what I had left was all I was able to use to be home with Eli. Well, in this case, at Children's Hospital. Not the ideal "maternity leave." I hate it. I pray everyday something falls into place and I can be able to take off a little bit more time to be home with Eli when he gets discharged. I pray! 

Lucas has been staying with us at Ronald McDonald. He has done so well adjusting. His bedtime routine is very messed up but we expected that. 3 weeks with grandma then here and back to grandma and back here. That's tough on anyone! Hopefully soon he will catch back up and be my 9:00 sleeper again :) 

Here's a few pics of our last few days. 

Xoxo 

Holistic Health

Today I experienced one of the most spiritual events in my 27 years of life. 

A kind woman walks into Eli's pod. We're so used to women and men, in and out that reading a badge attached to their scrubs has just kind of gotten to be normal. Today this wasn't a doctor, nurse or anesthesia tech. She was from Hollistic  Health. What is that? My thoughts exactly. Then the next 10 minutes explained itself.

She began to pray over Eli. I got chills from her hand motions and couldn't quite make out her words. But I was in awe over what this woman was doing. It was by far the most spiritual thing I have ever been close to. She was very kind. She didn't ask me to partake in any of it. She just did her thing and exited the pod.

By far the one of the most memorable events in this journey. I'm still choked up. 

Pray.

7:00am. Buzzing across the room. Danny's phone was vibrating on the floor. Mine was buzzing from the alerts. 4 missed calls. I panicked. "Danny answer your phone!" While he managed to answer on the last ring, I had a voicemail. "We need you at bedside, your son has taken a turn" was all I heard from it. I rushed over and Danny was able to get some info from the docs on the phone. I met with one of the attendings. Here's what we know. 

At 5:30am Eli had an X-ray taken. His stats got very low. Never exceeded 40%. They couldn't hear the shunt murmer. Positive note, he hasn't had to be revived for any reason. There's plenty of blood flow but not enough oxygen. They are sending him to cath lab to see if the shunt is blocked. He is on the heart/lung machine again. They will be taking blood out to oxygenate it and placing it back in. The dye test in the cath lab will tell us if his shunt is blocked. If so they have some options. Balloon catheter, put in a stent or revise the shunt. This is opening Eli chest again and starting over. If its not blocked the they will plan for other options that we don't know yet. 

Concerns for Eli at this point: organ issues, kidney and liver and brain damage, brain bleeds. 

We don't know the status of his brain function right now. They will asses that once they get a plan going for his heart. 

Pray for Eli. 

Ronald McDonald House

We've been waiting to get into RMH since Eli was transported over to Children's. The call finally came Tuesday night. We got a room! Many families travel 1000s of miles to be at this hospital for the care of their child or children. They rely on this housing during their stay. To be local and still get this privilege is so awesome. We will be able to stay here during Eli's recovery and have Lucas here too. Once Eli goes to the step down unit Lucas can visit as much as he wants. Right now he's restricted to 15m a day and child life has to accompany us. Last night was our first night in RMH. Lucas was fantastic. Took him a little time to fall asleep but once the tv was off and he was able to go over all my face parts, he was out. At one point I think his finger was in my nose. I couldn't have cared less. He was with me. I miss him so much when he's away. I don't think I get enough kisses in before the next time he leaves. Hopefully he gets to be with us more now that we're in RMH. We have yet to figure out a schedule but we will. I'm excited :) here are a few pics of our wing. I have more to capture but this for now is all I got last night.