Today I am sharing something very personal because today is the first day of Heart Month. Our baby was the 1 out of 110 babies that is born with a congenital heart defect.
I have started this post so many times but this time I will finish it.
Zoe has Ebstein’s Anomaly and W0lf-Parkinson-White (WPW). If you are interested in the specifics they are at the bottom of this post. Basically for us and Zoe, it means that I have a child that has a heart condition that requires medication 3 times a day, constant monitoring and one of the happiest, strongest little people that I know. Her doctors have been amazing and so has she. We are so blessed with our little #hearthero.
February is Heart Month and the photography community is spreading awareness for Congenital Heart Defects. Take a photo or several photos of anyone holding a paper heart and hashtag it with #CHDawareness #Paperheartproject during the month of February. If you or your child is a CHD Heart Hero and have had heart surgery draw a zipper on the heart and add the hashtag #hearthero.
You do not need to be a photographer to join in. The more awareness we get can eventually help fund more research. CHD’s touch 1 out of 110 babies……What if your baby was that 1? I have had one, the range of feelings can go from scary to down right terrifying. Let’s support our heart heroes by spreading more awareness.
Best ambulance driver… ever. Angel on earth.
Zoe was hospitalized a few times from complications from a cold. Heart patients are at a higher risk from complications and treating them can be a bit tricky. It is often described as a perfect storm because breathing medications adversely affect the heart. This is why it is so important to keep sick children home to get better so children like Zoe don’t end up in the hospital.
She spends quite a bit of time hooked up to monitor her heart and we are so incredibly thankful for all of the knowledge that her doctors have.
Typical Zoe.
Friends made some amazing cookies to eat before her surgery.
Zoe right before her first surgery. We were at Boston’s Children’s Hospital the day after the Boston Marathon Bombings. The police presence was intense but they sure made us feel safe.
Zoe right after her unsuccessful Ablation surgery. The hope was to eliminate the electric pathway that cause her SVT but no such luck. This is when she started on medication which has been working beautifully. She will undergo the same surgery in about 2 years. They will also fix a hole in her heart at the same time. Luckily her misplaced valve from the Epsteins is not causing her issues yet so no surgery is planned on that at this time.
Here is the post I made right after her surgery…. If you want to make God laugh, tell him your plans. During Zoe’s 6 hour surgery the surgeon was able to locate the origin of the racing issue but wasn’t able to fix due to her size. They can put her on a drug to keep her safe but she has to be monitored closely, especially the first few days. This we were expecting.
After the surgery however, she was in in SVT and they could not regulate her heart rate so we spent the night in the ICU. As we sat watching her heart race, with the medicine not helping at all I picked her up in my arms and held her. Rich and I watched her heart rate slowly but surely decrease to safer levels while the doctors watched from outside the room. The doctors then prescribed ‘my arms’ as part if the treatment plan.This is the power of being a mama and also all the wonderful prayers surrounding this little girl. Thank you.
This morning she is happy and doing great.
Zoe studying her heart.
Leaving the hospital
Medical info from the Mayo Clinic, “Ebstein’s anomaly is a rare heart defect that’s present at birth (congenital). In Ebstein’s anomaly, your tricuspid valve — the valve between the chambers on the right side of your heart — doesn’t work properly. Blood leaks back through the valve, making your heart work less efficiently. Ebstein’s anomaly may also lead to enlargement of the heart or heart failure.
If you have no signs or symptoms associated with Ebstein’s anomaly, careful monitoring of your heart may be all that’s necessary. If signs and symptoms bother you, or if the heart is enlarging or becoming weaker, treatment for Ebstein’s anomaly may be necessary. Treatment options include medications and surgery.”
Wolff-Parkinson-White (WPW) syndrome, an extra electrical pathway between your heart’s upper chambers (atria) and lower chambers (ventricles) causes a rapid heartbeat (tachycardia).
The extra electrical pathway is present at birth and fairly rare. WPW is detected in about 4 out of every 100,000 people. People of all ages, including infants, can experience the symptoms related to Wolff-Parkinson-White syndrome. Most people with symptoms first experience them between the ages of 11 and 50.
The episodes of fast heartbeats usually aren’t life-threatening, but serious heart problems can occur. Treatment for Wolff-Parkinson-White syndrome can stop or prevent episodes of fast heartbeats. A catheter-based procedure, known as ablation, can permanently correct the heart rhythm problems.”
5 Comments
Loved learning more about the beautiful, spunky Miss Zoe. She is even more amazing in my eyes now after seeing all she’s had to endure and thrive through. What an amazing kid. But then again, all your kiddos are amazing. Much love to you Rays!
Thank you so much, Lindsey! She is quite a trooper and they all feel the same about you!!
❤️ prayers always ! ??
Thank you, Judy!!!! xoxoxo
Much love to Zoe and your family.