2.

Praise the Lord! We made it … 

Kaden’s doctors told us he would be very fragile for 2 years; they told us that a thriving toddler at age 2 would be a good indicator of his childhood. 

Today, thriving is an understatement. 

Kaden is not only thriving, he is funny and smart, loves his family, horses, sports, bikes, books, and music. He has a warrior spirit with a tender heart, a mini Nate actually, and you should see him swing a golf club! So, today we celebrate. We celebrate what the Lord has done in our lives, to Kaden’s heart and to our own.

We love you Kaden Lee. You stole our hearts the first time we heard yours beat. Happy 2nd Birthday sweet son. We made it. 

Love,

Mom and Dad

Hope

There is something beautiful about pain. I think its found in coming out on the other side. Or maybe its when we use that emotion to take the focus off of ourselves and use it to serve others, or maybe it’s just being drawn to your knees in a place of complete surrender, and then maybe its all of the above.

Last night we went to Phoenix Children’s Hospital to an event that will forever mark our hearts. We stood outside of the hospital singing Christmas carols, hearing stories of heartache and hope, and lighting a candle and a large Christmas tree to both honor and inspire all of the children in the hospital and all of their families. I wish we had a million pictures to share, but instead we were hugging our friends, our children, and especially Kaden. It was cold, but he held his candle high.

Kaden candle lighting

This was so humbling. As I was squeezing Kaden as tight as I could singing Leonard Cohen’s version of Hallelujah, I cried. There was an overwhelming sense of gratitude and love, but also one of remembering fear and pain. How could that little baby we held in the CVICU all of those nights be here today inspiring hope in others? I cried more, and I held him as close as I could.

We never really allowed ourselves to dream for him. We didn’t picture him hitting his milestones. We only believed and prayed in God’s plan for his life; we clung only to this truth.

Today, Kaden is clearly thriving, and at 17 months of age, we spend each day in utter amazement at how much this boy loves life, truly. We did get to celebrate his milestones…. His first words were dada, hi, and Addy. He was talking before he was walking, and now he is running down the sidewalk chasing after his big brother. He swings his putter as if he has been doing it for years, and I think we will have to hide the keys to daddy’s golf cart before the age of 2. (He is already climbing up there and putting the keys in the ignition!) He hit each of these milestones with God’s perfect timing, and in hindsight, dreaming or trying to set our own expectations for him through these last 8 months would have stolen the perfect joy and timing that each one possessed.

The beauty of pain is in hope. Its in the promises the Lord provides. Its in living out our lives to glorify Him. Will you all join us next year to Ignite Hope at Phoenix Children’s or in your local community? We will walk again to honor these children and their families. We will walk again to honor our memories of Kaden’s fight and his triumph. We will walk again to glorify the Lord and all of His mighty plans.

Merry Christmas, friends. We love you.

IMG_5581-001(1)

The Endicotts Christmas 2015

 

 

 

Hospital Visits

I get anxious thinking about the possibility of a hospital visit. Sometimes I start to physically shake… as I think, I don’t know how much more we can withstand.

This feeling pales in comparison to seeing your baby boy start shaking when he sees the bright fluorescent lights go on overhead and the strangers surrounding him in scrubs. Then, he hears the snap of the blue gloves as they go on each hand, and he crys out … and a stranger holds him down for another blood draw or IV. It breaks my heart that these are the things he recognizes. I have heard its common for children, even babies, who spend time in the hospital to start to experience medical anxiety. I would be lying if I didn’t admit I wish it was different. I can only pray that looking in my eyes or hearing our voices help to calm his sweet soul.

We spent Easter weekend in the hospital. Cardiac babies are so fragile. He was vomiting all day on Friday, and that left his little body very lethargic the following morning. The pediatrician admitted us directly to Phoenix Children’s for further evaluation.

He didn’t have the typical symptoms of a flu virus, no fever, etc. He just couldn’t keep his food down. They started him on fluids and ran several tests. They did numerous x-rays and ultrasounds, all to rule out major illnesses and to make sure his heart was not failing. We are thankful for the team of doctors that look over Kaden, specifically his cardiologists. Wow! Are we blessed. They are so very thorough and cautious with his care. This does take time, patience, and perseverance as a family, and of course Jesus – He always carries us through.

End Result: A stomach virus, and Kaden should be fully recovered in another 5-7 days. Through this process we did find his red blood cell count low, and Kaden got another blood transfusion. This is nothing to be concerned about; our docs are all over it. We will be working with a hematologist who will follow his care over time. We already ruled out all major illnesses, and this is most likely only occurring because he has had so many blood transfusions that his body has not required his bone marrow to produce more red blood cells on its own. We will watch it, and look for trends.

On the way to the hospital, I was listening to the radio. There was a quick message that really resonated with me. They were talking about Christians, and as we witness we tend to think that our lives should be neat and perfect, tied with a bow, because God solves all of our problems. Their message was clear; it is not what is going on on the outside that matters, but what God does on the inside of us that counts. We are all broken, and a good friend recently reminded me that we all need a reason to need Jesus. I am thankful for this message. I am thankful for the promise of a problem-free life in Heaven. I am thankful for hope. I am thankful for Kaden. I am thankful for story. I am thankful for our family. I am thankful for grace. I am thankful for our Savior, and not necessarily in that order 🙂

We were also reminded this weekend that although we weren’t able to spend Easter together as a family, we should be celebrating the death and resurrection of JESUS daily.

Love,

Nate & Erica

Heart

Heart. You gotta have it! And we are leaving Boston with Kaden’s heart in better condition than when we arrived, and probably ours too ❤️ We came with the intentions to dilate the mitral valve in the cath lab, and instead the surgeons at Boston Children’s were able to repair his valve & left ventricle in his first open heart surgery.

Prior to discharge, Kaden needed to get a sedated echo. Our goals were to have the pressures through his mitral valve be half of where they were when we started & the pressure on the right side of his heart to be low too. To be specific, Cardiologists gauge pressure through numbers on a scale of mild, moderate, severe, and critical. The gradient across Kaden’s mitral valve has been 12-14 (moderate to severe) since he was born. Dr. T wanted to see these numbers drop to 5-7 (mild to moderate) after surgery.

Results… Currently, the gradient across the mitral valve is 3-4 … MILD!!!!!!!!!! Wooooooooo!!! The echo proved the pressures in the right side of the heart were also low!! Exactly where we had hoped! AND the echo showed NO STENOSIS in his aortic valve. This is where his disease originated, and it has miraculously been healed!!!!!!! This doesn’t mean it may not come back, the nature of the disease is stenotic (sticky) tissue. However, for now we will celebrate this victory and Praise God for orchestrating Kaden’s healing. It’s a true miracle.

Kaden has recovered very quickly, and just two weeks following his surgery, we are headed home. Thank you again for following our story, and more importantly praying for our son. His story is a testament to the power of prayer and we must give all the glory to our Maker, the Almighty Healer.

Although this has been the most difficult thing we have faced as a family, Lord I know we are the clay and you are the potter. “We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves”. 2 Corinthians 4:7.

 

OHS | Post Op Day ?

If a picture is worth 1,000 words, picture this ….. A mother and father desperately waiting day after day to do just one thing, hold their sweet baby boy after his first open heart surgery. These were long, heart-wrenching days.

In the hospital, there is no real concept of time. You don’t see the sun come up or go down. Hours turn in to days and days turn in to weeks. This is partly the reason I had to title this post, “Post Op Day ?”. The days have kind of blended together, and also so much has happened so slow, but so fast.

Once Kaden was extubated, they said, “ok you can hold him now”. With tears of joy streaming down my face, I was able to prep a chair close to his monitors so the nurses could move our son’s delicate body to my arms. This one moment was worth the prior 1,000 hours of pain.

My heart is smiling bigger than my eyes.

My heart is smiling bigger than my eyes.

As he slowly came to, our desires to see more of his personality and manorisms grew. His voice was so hoarse that I actually just wanted to hear him cry. This may seem like an odd desire… I didn’t want him to be in pain; I just wanted to know he was still himself. We were unsure how or if the surgery would affect him developmentally.

Nate just wanted to hear “dada”. And what dad wouldn’t, right? But these two have a special bond. Kaden and I are always together and have a deep bond through nurturing and affection, but when he sees his father, he lights up. I have never seen anything like it. It’s beautiful. Well, Nate got to hear those words too.

Dada

Dada

As each day passed, Kaden got progressively better. The doctors were astonished with how strong his vital signs were throughout this process. Even in and out of consciousness, his heart remained strong. Even with the irritation of all of the tubes and wires sutured into his body, Kaden proved to be a fighter. These days were hardest on us. He didn’t appear to be ok, but the doctors consistently reassured us he was doing great.

These days also had us thinking about so much. There is so much pain in hospitals, physical pain and emotional pain. If I had a dollar for every tear we witnessed and every child we heard cry over the last few weeks, I think we could resolve world hunger. I also appreciate the feedback we got from our last post. Being transparent, that is just who we are. We are not a couple who focuses on the negative circumstances, but it is natural to feel them. I have read about people going through tough stuff, and making references to wrestling with God…. But isn’t it wrestling with ourselves? Wrestling with our own thoughts? If one thing is apparent in reading Kaden’s story, God is faithful. He is reliable. He is consistent…. Let me repeat, God is faithful!! He is reliable!! He is consistent!! It has been hard fighting this battle, but in the end we wouldn’t change a single thing. Nate said these first seven months of Kaden’s life will be the crux of his story.

Kaden was released from the ICU on Monday to the Base Cardiac Floor. The goals here were to monitor feeds, manage care, and continue healing. Kaden made a quick recovery here!! He has literally had a supernatural appetite, quickly taking to his routine with bottle feeds and baby food.

9 days following Open Heart Surgery, Kaden is sitting and reaching for bubbles.

9 days following Open Heart Surgery, Kaden is sitting and reaching for bubbles.

Our littlest love.

Our littlest love…. Heart baby, happy baby.

Kaden was released from the hospital shortly after these photos were taken. We can only thank Jesus for this immaculate healing.

We will be in Boston for a week, anticipating our family being back together. Our final follow up with cardiology is next Tuesday. We will provide the details on his heart after this appointment. Keep praying!!! We couldn’t have made it to this point without our family and friends. Thank you Jesus for those you have surrounded us with. We see your loving arms in our community.

 

Faithfully,

Nate & Erica

 

 

 

OHS | Post Op Day Three

Have you ever been so sad that you can’t cry? Is it shock? Or just that they are no more tears? I guess today the roller coaster begins.

I can’t be positive today. I don’t see the silver lining. My heart hurts so bad for my son.

I don’t know what “normal” is these days, but I want that. I want to be at a mommy and me class talking with other moms about cute things our babies are doing. I want to be toting him around in a cute carrier, or my new stroller, showing off his beautiful smile. I just want out of here. I don’t want another day in the hospital.

I was just thinking about how Nate let me hold Kaden, while he pushed me in a wheelchair the first time we left the hospital from Phoenix Childrens. Kaden was four weeks old. I didn’t need a wheelchair, but I had seen all the other moms leave like that with their babies after delivery… And then, my arms were empty. It wasn’t quite the same, but I still got to do it. I am so thankful for this moment. I have the best husband.

Kaden was extubated late this afternoon. He still needs additional support with a bi-pap machine because his breaths were short and shallow. He could be a new baby in 12 hours. He could need re-intubated. We think he just needs another night of rest. Hoping for the best …..

OHS| Post Op Day Two

Today has been quiet and nearly uneventful. In the Cardiac ICU, this is a huge blessing. They are slowly lifting his sedation, and Kaden is proving strong and stable.

They have begun to feed him, just 2cc per hour, and this is his first time using a feeding tube. (Avoiding the NG tube up to this point has been a victory we are so proud of!! High five!!) So … this feeding tube is temporary. We need to begin giving his body nourishment to facilitate healing. We will slowly transition back to bottle feeding and solids over the next couple of days (fingers-crossed).

The plan is to allow rest for the remainder of the day and through the night. They will remove his chest tube first thing in the morning and extubate around noon.

We will keep you posted. Thank you for praying!

❤️K❤️

OHS| Post Op Day One

We still can’t really wrap our heads around the fact that our super happy, funny, strong, extra smiley and loving 7-month old baby just had open heart surgery (OHS). It is mind boggling that surgeons are able to operate on such a small child. At Boston Childrens there are over 30 rooms in the CICU, and from what we can see, nearly every room houses a child that just had some type of major, invasive heart surgery or a heart transplant. Kaden’s doctors equated their cardiology department to the airlines, this is just what they do. Airlines fly. BCH does heart surgeries. They do 5x more major heart surgeries on babies and children then anywhere else in the world. They are the best, and we couldn’t be more grateful the Lord has led us to this hospital and team of doctors.

Kaden is stable. He made it through a 9.5 hour operation. Praise God!

The surgery itself was clearly long and treacherous. The repair of Kaden’s valves were more difficult than they had imagined. The surgeons first made the incision, going through his sternum to reach his heart. A small incision in the left atrium allowed them to reach his mitral valve and the left ventricle. The initial defect, we understood, was with the aortic valve, but once they were inside his heart, they could see why the pressures in his heart and lungs were so high. If you can, picture a circle that represents the mitral valve… Then inside that, picture two half circles flipped upside down (so the rounded edges touch). These represent the two leaflets. These should be connected with muscle and chords to create a normal functioning valve. With Kaden, his valve looked like a little pacman (yes, mom terms). Half of the valve was completely closed and the other part (pacman’s mouth) had been torn during his last catherization, creating leakage. Dr. Emani had to cut through the connected tissue to open the leaflets, as well as recreate tissue, and then reinforce tissue to stop the leakage. This all in a valve the size of a penny.

After the first repair, the reinforcement wasn’t enough. Dr. Emani had to go back in a second time to add additional tissue. It wasn’t until the end of the day, they made the final call not to replace the valve. This kept us on pins and needles for a good portion of the day. Although they are having a lot of success with melody valves, the first one was placed just over four years ago… So there just isn’t a lot of data to support longevity and function. Also with his size, the melody valve would certainly have to be replaced in a few years as he would soon outgrow it. At this point, there is a 10-15% chance that his valve will still need replaced in the next 30 days. Hopefully, this repair will last as long as possible. The potential is 4-5 years, and although that does mean another OHS, the benefits of keeping his own tissue at this point outweigh the benefits of having a fully functioning valve. Please specifically pray for stability & normal function, for healing of his mitral valve.

They didn’t need to do any work on the aortic valve. Miracle! It looked pretty good. They were able to remove scar tissue from this valve and the left ventricle, and this required another incision in the aorta to access this part of the heart.

Today, Kaden is on a ventilator, and the expectations are to remain that way for about a week. He is on paralytics, lots of sedation, and muscle relaxers so that his body can slowly heal. Hopefully by Friday, he will be ready to begin waking up. These next days are the most critical. We have been told this week’s road to recovery will be the most difficult part. Friends, we can’t wait to hold him and see that infamous smile.

I do not think I am able to describe the emotions we experienced yesterday. At the core though, sits gratitude for our Lord and Savior. We couldn’t have made it to this point on our own will and certainly not on our own understanding. We couldn’t have made it to this point without our incredible support system constantly praying, messaging, and reminding us where we need to keep our focus. One of the most memorable parts of the day was seeing how many people publically supported Kaden with the ❤️K❤️ on their hands. My sister-in-law in Chicago took her daughter to the doctor yesterday, only for the nurse to recognize the K on Lila’s hand. She knew that was for Baby Kaden and had been following his story on Facebook!! Amazing!!!! We are reaching people, you matter!!! Thank you for being a part of our journey. We are so blessed.

Post Op Day One… We will continue to walk purposefully. Will you walk with us? We are praying for immaculate healing and the quick reunification of our family.

With Love & Gratitude,

Nate & Erica

Round Three | Today Is The Day

Yesterday was tough but Kaden did well. He TRULY is a fighter and our little champion. His story continues to be a miracle. What we heard and what we witnessed will FOREVER mark us and leave an eternal impression on our family but more importantly the families and hospitals and doctors for which we will be making NOISE for.

One family in from Portland has 6 kids. 5 are adopted and 4 of these children had congenital heart defects. Talk about heart! We were so grateful to meet this warrior mama!! Her youngest just had a heart transplant, and her toddler was here in Boston with HLHS, hoping to get approved for the Fontan procedure. Another boy, 7, had just received a heart transplant, clearly another warrior. 7 years ago, they didn’t have the technology or training to spot what has now saved our son. This family was so grateful to hear Kaden’s story and to learn of advances in technology and medicine with left heart issues. We are meeting other families in the valley and throughout the U.S. that have their own stories, and we can’t wait to be a voice and raise awareness for these miracle babies!

SOOOOOO TODAY is the DAY where they will make a small incision in his groin area to put a catheter in his artery all the way up to his heart. Then they will feed a needle through it as they puncture a tiny hole into his heart and then another to get across the heart over to the mitral valve. They said Kaden’s valve is essentially closed, that the blood has found three holes to seep through, leaving the pressure across this valve moderate to severe. The catheter will also thread the balloon to stretch the valve and relieve some pressure.

Our ask is that Kaden is safe, that his body can handle the anesthesia and the procedure, and the procedure itself goes better than expected. We also hope to avoid the ICU. BCH does one of these procedures a week, so we are confident in the results they can get for Kaden…. We all know who truly is in charge today. We are confident that His plan is perfect and we are so unbelievably thankful for all the prayers and support. Father, please be with Dr Tworetsky, Dr Marshall, Dr Lock and all others who will be involved today. No matter what the outcome is, we trust you — all together EVERYWHERE…AMEN

Home Sweet Home

After one week in the hospital, two blood transfusions, and lots of meetings, Kaden was released to go home. It was a challenging week for us, but we were reminded (again) that Kaden has been placed in the hands of some amazing physicians and that being obedient isn’t always convenient, or in accordance with our timing. It is always ‘just right’.

Kaden was released just in time to take these pictures at 4 months….., Nate said, he is 4 months old and there isn’t anything he can’t get through. He’s tough, and God has a firm grip on him.

No caption needed.

No caption needed.

This is what a 4-month fighter looks like.

This is what a 4-month old fighter looks like.

We know surgery is inevitable; it is just a matter of when.

What we do ….. We are praying to get through his first full year of life before going back to Boston. We are asking God to heal his heart everyday.

What we don’t do ….. We don’t let this stop us from doing life. I went out this afternoon to help a new agent open her first retirement account for a client. I got this picture and the following text, We love you mommy, you are the best.

These moments make it all worth it.

These moments make it all worth it.

In Life & Love,

E