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