A Mother’s Story — Raising An Infant With A Heart Defect: Part 2 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 and 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 27: We got word that we were able to get Zeyd on the operating room schedule to have surgery the next morning. They were going to fit him in as the second case the next day. Oh my goodness, tomorrow? I just started crying, crying, and crying so hard. This was real, so real. Surgery? Tomorrow? On my little 8-pound baby boy? This was mentally and physically, the most unbelievable and difficult time of my life, my body just ached everywhere because of my emotions. To be a new mom and have a beautiful new baby, and then have to deal with such a serious heart condition that absolutely required surgery. Without surgery, I could not bare to think of how little time I might have had to be a mother. Complete atrioventricular canal defect requires a surgical intervention or I am unsure how long Zeyd would have made it. What if I lived 100 years ago, then what would I have done? I am so thankful for medical advancements in the world we live in now. I know we had so many prayers for us. I believe we had and still have an angel watching over Zeyd and protecting him, for which I am indescribably grateful. Prayers are amazing, so are miracles.
Day 28: Zeyd had open-heart surgery today. He had an ASD (Atrial Septal Defect) patch with fenestration and partial atrioventricular (AV) valve repair. We also found out that Zeyd had a double orifice mitral valve, or DOMV, and they could not fully repair his valve defect. Zeyd also has narrowing of his aorta, so basically we have all sorts of heart malformations. The size of Zeyd’s aorta was not small enough to need surgical interventions immediately, but not big enough to be considered normal. We hope that the size of the aorta will be adequate enough to support Zeyd’s heart and body, as well as his small mitral valve, and we hope that they grow as his heart grows. Zeyd’s stay in the CVICU was tremendously scary. Before I was pregnant, I had worked as an ICU nurse where I had experienced very scary and critical situations, but nothing on earth can prepare you for seeing your first born baby intubated and sedated and depending on medical equipment and IV medications for his very life. I broke down. I have never experienced a feeling like this and pray to never again. But as a parent, you have to cope and face it and deal with the situation. I had to be strong for my newborn, and for my husband, and for my family, and for myself. I appreciate all the physicians, nurses, techs, and staff who spent time looking after my son and caring for him, ultimately — saving him. Words will never, ever, ever be enough to say thank you to everyone. Zeyd improved quickly and was weaned off his medications. I felt a little happier every time a wire, a chest tube, a dialysis catheter, a central line, an IV, or even when a piece of tape was removed. I could recognize my precious little baby more and more as every day passed.
Day 30: Zeyd was extubated and I got to hold him. Amazing. I did not want to let go. Ever. I am so excited to be able to nurse him soon! TCH is great, it has a milk bank where mothers can go pump at any time of day on the 4th floor. It is so convenient for promoting mothers choosing to breastfeed with easy access to pumps and bottles and storage of the milk.
Day 33: Post-Op Day (POD) #5 — Discharged to the 15th floor. Every day is a miracle. Thank you every one for your prayers, they are being heard. So happy to be on the 15th floor again so we can lay together on the bed without constantly being on the monitor. So happy. So grateful. Zeyd is doing better every single day and improving at the same rate as any other cardiac patient. The 15th floor this time meant one step closer to our home.
Day 35: Discharged today, amazing feeling, so, so, so amazing. Unfortunately, when we got home Zeyd was fussier than he had ever been before. My husband ran to the nearest Walgreens and got Children’s Tylenol and Ibuprofen and we called the Texas Children's on-call physician to double check the dosage of pain medicine we could give Zeyd. We assumed his sternum and chest was probably sore from the open-heart surgery. Hours later, Zeyd was still screaming so the on-call physician called in a stronger prescription. By midnight, Zeyd had finally got a few hours of sleep. Despite our crazy emotional rollercoaster of a first month, home was still... home sweet home, and it felt good to finally be home, as a family.