A Mother's Story — Raising An Infant With A Heart Defect: Part 5 Of 6
Our introduction into the amazing world of parenthood... and then our abrupt reality check in the form of a life-threatening congenital heart defect & the successful medical interventions taken at Texas Children's Hospital which taught us to never take a day for granted. This is our story.
Day 202: Zeyd stood up for the first time today, holy moly he is so strong and amazing!!
Day 227: Zeyd had his sedated echocardiogram at Texas Children's Hospital this morning. I have noticed that I get my anxiety before I go to any doctor's appointments. It is no fun, but I suppose it all goes back to our traumatic first few doctor's visits. Today Dr. Rivenes said everything looked great. I immediately felt a huge weight off my shoulders and I could breathe better. Then she listened to his heart and said that the echo shows that he does still have narrowing of the aorta and a narrowing in his mitral valve. But the pressures of his blood flow had even showed slight improvement, which may have been because he was relaxed and sedated, but it was still amazing news. It was better than if he had higher pressure readings. Dr. Rivenes said that we should look for symptoms such as him getting tired easily with activity, sweating, rapid breathing or any similar behavior changes that we have been educated to look for. He may take more breaks than the average kid, she said, or more nap times, but
I am more than OK with that and anything that comes our way... as long as Zeyd is happy and overall healthy!
Day 274: Zeyd took his FIRST step!! What a little stud this baby is!
Day 319: My husband and I went to see Dr. Shannon Rivenes this morning at 8, for a regularly scheduled check-up. Zeyd's heart looked like it may have a little more leakage from the left side but his valves and aorta are at least growing along with his heart. So his heart continues to have problems and he continues to need monitoring, but I am always ecstatic when we get to go home instead of to the ER after a visit to the doctor. His heart may never be perfect, but he is, and I will take him exactly as he is.
Zeyd today: Zeyd is a 10-month old walking, babbling and climbing machine. He is a healthy height and weight and is growing and developing normally. He loves swimming and playing with mom and dad; hide-and-seek is his favorite game. He occasionally has episodes of rapid breathing with activity and occasionally sweats light during feeds, but his baseline is normal and I have been educated on what warning signs to be concerned about. Zeyd is the greatest joy in our lives. His father and I are so madly in love with this baby; we are beyond grateful for every second of every day that we get to spend together. Zeyd continues to see his pediatrician and cardiologist, Dr. Shannon Rivenes at regular check-ups where he usually gets chest X-rays, an echocardiogram, and his vital signs and measurements are taken. Zeyd's heart has shown slight improvement and we hope that as long as his valves and his aorta continue to grow normally with the rest of his heart, that he will no longer require additional surgical interventions. He is a happy and active and amazingly beautiful baby and we can only dream of spending a lifetime together as a family. We are so excited for what the future holds, and as long as we are all together, that is more important than anything. We are so grateful for what the future holds, and as long as we are all together, that is more important than anything. We are so grateful to know that there is a place like Texas Children's Hospital available for us and for other children in need.