When Michael and I found out we were pregnant with our first child we were completely overjoyed. My pregnancy was very textbook from the beginning and every appointment went perfect. We soon found out we would be welcoming a little BOY and just could not wait. At the halfway point of my pregnancy we had his anatomy scan and my doctor said he moved around the entire time so they couldn’t get all the images they needed. They sent us to a specialist to have a second look and make sure they could get all the images of his heart they couldn’t see.
That was the day our world changed. All I remember hearing the specialist say was “your child has a critical heart defect.” The rest is really fuzzy. She also said many times a genetic condition is associated with heart defects so we went ahead with testing so us and his doctors could be fully prepared for his birth, and give him the best chance to thrive. The doctors all agreed we needed to be seen at Children’s Mercy in Kansas City so we made plans for many visits there.
The next couple of weeks we were in a fog. It felt like a bad dream that we just couldn’t wake up from. Everything we had been planning for and dreaming of all of a sudden changed and we were filled with worry and anxiety.
We started to research more on his heart diagnosis and read about other children who had gone through something similar. We felt like we were ready to take on this journey and be the strength our little guy would need. That was nearly the moment when the phone rang and my doctor informed us our little boy also has a genetic condition, a micro deletion of his 22nd chromosome. Called Digeorge or 22q syndrome.
It felt as though our world came crumbling down all over again.
The next few months we spent seeing all of the doctors weekly. They monitored baby’s heart very closely as we prepared to deliver in Kansas City. Every question we had about his heart and his genetic syndrome was answered with “we can’t give you an answer until he is here.”
On February 1, 2018, the absolute best day of our life, Lucas Michael entered the world screaming, at 6 lbs 8oz. There wasn’t a dry eye in the room as we witnessed a true warrior fight to breathe and immediately show us his strength. They took him straight to the adjacent operating room and placed an umbilical line for testing. He was then moved to the NICU to begin echos, ekgs, blood tests, and everything imaginable to begin the plan for his treatment.
Luke then had a heart catheter at one week old where they were only able to get a stent to one of his lungs, and not the other. The catheter did not go as well as planned, but Luke continued to fight. He was doing really well when out of no where we noticed seizure like activity. We later learned he had a blood clot, likely from his stent, which caused him to have strokes, which caused the seizures. Now we had a whole new set of obstacles and medications.
Luke spent his first 7 months on constant oxygen, anti seizure medication, blood thinning injections, and a couple others. He saw a cardiologist in Wichita and Kansas City along with a neurologist, hematologist, physical and occupational therapists. The plan at Children’s Mercy was to send us home so he can gain weight and then do 2-3 open heart surgeries this year to stabilize him. With the possibility of more soon after.
We didn’t love this plan, 2-3 open heart surgeries before his first birthday, the thought made me nauseous. After some research, we found a surgeon who “pioneered” the surgery Luke needs. So we asked our cardiologist to send all of Luke’s information to this team at Stanford Children’s hospital for a second opinion. They contacted us and let us know that they would do Luke’s full repair in one- two surgeries, and showed they had full confidence. Without a second of hesitation we said yes and decided to move forward with the surgery at Stanford.
Lucas had his first open heart surgery on September 12, 2018 at Lucile Packard Childrens Hospital in Palo Alto, California. He did phenomenal with very little set backs in his recovery. The surgeon decided that Lucas would need 2 open heart surgeries, his first he would repair his right side (it was getting no blood flow), let the right side grow for 6 months and then we would return for his second open heart surgery in March of 2019 where he will (God willing) do a complete repair. We have thoroughly enjoyed this in-between time of his surgeries. Lucas celebrated his first Thanksgiving, Christmas, and FIRST Birthday! He has been working hard at gaining weight, and in his therapy to be as strong as possible for his next big mountain he will climb on March 15, 2019.