We are five weeks away from surgery, and I have a million things running through my mind. One of those is our CHD video we did after Reiss’ first surgery in 2013. She was so little – just 10 months old – and wasn’t aware of what was going on, wasn’t able to voice her concerns or feelings, and we weren’t sure she would even remember the event.
Now, it is different. Reiss is smart. She understands pain, hurt, fear. She knows the ways of the hospital in and out.
I envision her walking into a hospital – any hospital at this point; she has been through so many – a certain hospital smell hits her nose and a wave of emotions run through her body. She remembers every time she has been here, every poke, every prod, every medicine, every procedure, and exactly how that made her feel. Reiss may only be 3 1/2 years old and unable to know how to process or communicate this information, but it is there. And she recognizes it.
On May 25th in Houston, TX, she will cling to what she knows, what is safe and comforting – her family.
This is where it gets hard. We will have to give her away. Give her to the doctors we chose after months of research, trusting them to perform an intricate, rarely-done surgery we hope will bring the best outcomes for Reiss. We will tell Reiss to #BeBrave. We will ask that she be brave when the nurse asks us to hand her over for anesthesia.
We will try to stay strong for Reiss on the outside, while we are cry on the inside. We will have to leave it up to God and hope the path we chose was the correct one, the one that will bring less daily suffering for our child, and less worry for the family. We will have to accept the risks. The surgery could fail, we could ultimately be left with only the Fontan option – the one we didn’t want, or she could not make it through the surgery at all.
There is a lot of fear in this event. However, there is still something inherently beautiful about open heart surgery. Fear and worry fill the hearts and minds of all involved from diagnosis, through surgery plans, all the way up until the day of the surgery. Once the surgery starts, a beautiful thing happens. Doctors and nurses, who have studied little hearts for decades, intricately move about your child’s chest cavity to perform the unthinkable, the amazing. One wrong move will have the greatest of consequences, and they know that.
They are there to make sure your child has a better quality of life than before he or she entered the hospital doors. No, open heart surgery is not an answer to CHD – there is no
cure, but they are adding years to his or her life, gifting you time to spend with your child,
allowing time for your child to make a mark on the world.
Additionally, the heart of a child is amazingly resilient. The first 48 hours are the toughest, but each day following is just one step closer to recovery. Every day, we will see a glimpse of resilience in Reiss, and each day we will see she is doing more than the previous day.
We choose to #BeBrave – not only in principle because that is what we are trying to teach Reiss, but in practice. We are hopeful for a successful surgery and excited about how this can positively affect Reiss’ life.
Fundraising to help with medical expenses
Reiss MaeLene will undergo open heart surgery to adjust her complex, unique congenital heart defects (CHDs) for the better. This surgery will help increase the blood flow to her lungs, increasing her saturations, and decreasing the likelihood of her life-threatening hemoptysis (coughing up blood).
After researching multiple second opinions, we chose to go to Houston because of their expertise with Reiss’ specific heart defects. Unfortunately, this is “out of network” for us in regards to insurance coverage. We quoted this out prior to our decision and estimated that we could ultimately pay upwards of $100,000 for this surgery.
Unfortunately, surgery is not a cure for Reiss and her CHD. This will only be one of many surgeries in her lifetime.
Please help support Reiss and with the purchase of a Bravelet – great for men or women!
This Bravelet represents bravery, as well as awareness for Congenital Heart Defects (CHD).
Bravelets | Order your “Be Brave” product today.
#TeamReiss shirts are still available for purchase online. The store officially closes on May 7th. Click on this link to view the shirts, order and ship or Pick-Up at The Greek Corner Screen Printing and Embroidery.
Long-sleeved shirts are $15 (additional for larger sizes)
Short-sleeved shirts are $12 (additional for larger sizes)
To view the price, first choose your size for each shirt.