When I reflect on the past few years I can see God’s plan so vividly. It’s funny how I never questioned the things I was doing or the paths I was following. Opportunities were presented and doors were opened and I walked through them. They say hindsight is always 20/20 but we believe that God does not make any mistakes and we are exactly where he has planned for us to be!
My journey as a heart mom began long before I even knew what a congenital heart defect (CHD) was. I was in the dark on the statistics that 1 in every 100 children is born with a CHD. I knew people that had children with chromosome abnormalities, physical defects, or learning disabilities but I like to think that my family is “normal” so none of that would be an issue for us when we decided to start a family.
I began my career in commercial real estate. I knew nothing about it and was hoping it would pay the bills so I could go back to school and finish my degree. My true passion is children with autism and I was hoping to get my degree in special education with an emphasis in behavioral therapy. Instead I got a bachelor degree in Psychology and a whole bunch of student loans. We can save how that happened for another post, until then back to real estate. In my first position in commercial real estate, I had an incredible coworker that would eventually become my boss. His first child was diagnosed with a congenital heart defect and required open heart surgery. I had just started at my job and didn’t know much about this person and what was appropriate to ask regarding his son. I decided that I would help him and his family in any way they would ever need if they asked.
In 2008, I met my husband online. We had lived 1/4 of a mile from one another. We frequented the same spots and I’m sure had been at a bar or two at the same time during the 3 years prior to us meeting. It took a wink online to get the two of us together. God works on the Internet too! That same year that I met Jeff, the coworker mentioned above, asked for my help. I had been very active with several nonprofit organizations and had experience with fundraising and gala events. He asked me to assist a friend of his with her new foundation for their first gala. I was happy to help! I gathered a handful of my beautiful friends, we all got dressed up, and we helped sell auction items to raise awareness for the charities cause, Congenital Heart Defects! Never would I imagine that the charity, Hopeful Hearts Foundation (www.hopeful-hearts.org), and its founder, Terra Chez, would be such a pillar in our lives and become the rock that we needed to get through the darkest days in the CTICU.
Around the same time I was very active at my church. At a Sunday service I noticed a need for volunteers at the Ronald McDonald House (RMH) charities. I had been looking for an organization to invest my time in regularly so I jumped at the opportunity. I became a group leader and once a month I would take groups of volunteers to RMH to make meals, do activities with the siblings of critically ill children, and/or clean the common areas of the house. I loved what the organization stood for and believed in the services that they were providing to the families. I would try to speak to families while I was there and understand their journey. Every one of their stories broke my heart and I never imagined what it would be like for a family that had to stay there.
Fast forward to present day and many more of God’s “coincidences” later, I write this in my room of the Los Angeles RMH a day after an incredible visit with Terra Chez. My husband was only a dream and our son wasn’t even a twinkle in our eyes when God began laying the foundation and the stepping stones for HIS plan for us. Though this wasn’t the journey that we had imagined, the prize is worth the battle. God gives his hardest battles to his toughest soldiers. I encourage everyone to seek God’s plan and do not be afraid. Walk through the doors he opens for you and lean not on your own understanding. You never know where the path you lead today will find you tomorrow.
As for our Lion Heart, it has been several days since we have updated everyone. We have been “caught inside”, as some surfers say, and every time our head pops up for a breath we are hit by the next wave. Owen has had some great days this week. He continues to strengthen his lungs and every day gets a little closer to being extubated. The medication has worked wonderfully for his heart rhythms and now they are trying to find the perfect medication balance to control the arrhythmia and keep his heart rate at a normal range. It is currently a little on the low side. They have continued to administer medication to expel the excess fluid on him and are going slow and steady to protect his kidneys. We are finding that our little man is much littler than we ever thought. He’s small but MIGHTY indeed! He is being weaned from his pain medications as well and is showing very few signs of withdrawal. He still has a temper on him but he is getting better at calming himself. We are so happy to see him more alert and acting like a baby.
Mommy and Daddy have been in meeting after meeting with multiple specialists and this is where the waves come in. Although they are getting stronger, Owen had some setbacks with his lungs and it appears there may be a weakening or full loss of function to the left side of his diaphragm. They will be continuing to monitor it and if it does not get stronger and repair itself then they may have to do a surgery to repair it. We will not know if this surgery is necessary until his is ready to be weaned off of the ventilator. The test necessary to test the function of his diaphragm requires him to be off the ventilator and be able to breathe on his own.
Next we met with a genetic counselor. We have been hesitant to share this information with everyone as we do not want a syndrome to define our son. We know that genetic testing is only a benchmark for the mapping of any difficulties that Owen may face in the future. Our son has been through more in the first 17 days of his life than most people will have to face in their lifetime. We are grateful for the information that we have received from the geneticist to enable us to seek early intervention, if needed, for our sweet boy. With that being said, Owen has Microduplication 22q11.2. and a partial trisomy (3 copies) or tetrasomy (4 copies) of Chromosome 22. Both of these chromosomal abnormalities are extremely rare and there are very few documented cases. There is a 70% chance that Jeff and/or I have the 22q11 duplication and it did not present itself. We tend to think that we have led a relatively normal and successful life, thus far. Our Lion Heart is a warrior and we do not foresee ANYTHING ever holding him back!
Lastly, we had to meet with an Oncologist. This was the hardest pill for us to swallow. When Owen was one day old they did an ultrasound on his kidneys and noticed a mass. At the time they thought it may be some meconium in his intestines and chose to keep an eye on it. They did a follow up ultrasound on Wednesday and they still saw the mass and it had grown. On Wednesday they transported Owen downstairs for a CT scan and confirmed that he does in fact have a mass on his right kidney. Owen’s doctors met with the oncology and general surgery departments and they all believe that the best course of action is to have it biopsied and removed. They currently believe that the mass is a Neuroblastoma. There is a very wide spectrum on neuroblastoma and we are praying that Owen has a benign tumor that can be removed, end of story. As with everything Owen has endured we are by his side every step of the way and are here to support him however he needs. The doctors have scheduled him tentatively to have surgery on Thursday as long as he is strong enough. We are asking everyone to pray for this procedure. We are very sad that Owen will have to endure another surgery and go under anesthesia. He has been doing incredibly well and we do not want this to be a step backwards in his recovery. Even more we are praying that the tumor is benign and Owen will not have to undergo further treatment and that the tumor has not spread to his bone marrow. We will not know anymore on this front until the mass is biopsied.
Thank you for your support and being there for our family every step of the way. We have been so humbled by the love and encouragement received from all around the world. Your prayers have made a huge impact on us and we are in awe of the impact our Lion Heart has made all around the world. Thank you for being a part of our heart family.