UPDATE: You can follow along with some recent updates on how my son is doing on my other blog.
All your responses from last week’s post touched and overwhelmed me so, that I almost don’t know where to begin this week. Thank you all for sharing your hearts and stories with me! This post contains pictures of my son after open heart surgery. They may not be suitable for all audiences, so your discretion is advised. I felt that the photos needed to be shared to tell the story, so I hope that you all don’t mind.
My son was born in April, exactly one year after losing a previous baby. Despite his heart condition, he was born strong and was able to come into this world without any medical intervention. My labor was very long, and very hard. There were some points that honestly, I felt like I was on death’s bed. But I knew that my son had to enter this world without being affected by drugs or medication. After 26 hours of intense labor, he came into the world and the medical staff immediately whisked him away to make sure his heart was okay.
While checking him over, it was found that his rectum was closed. I was unable to nurse him, because doctor’s had to ensure that his intestines were intact before any liquids could pass through his body. He had IVs and a tube put down his throat to keep his stomach cleaned out, and was then taken by ambulance to Children’s Healthcare of Atlanta. He passed a small newborn stool on the way over, so at least we knew that his intestines were intact.
Doctors diagnosed him with anal stenosis (where the rectum is partially or fully closed at birth), and our son would have to be dilated twice a day for the next four months. Sorry if this is creating terrible mental images for some of you, but it is every bit as terrible as it sounds. It was so hard on us, and him as well. Four days after he was admitted to the hospital, we were able to leave. Unfortunately, because of the separation, and the tubes that were placed down his throat, my son was not able to properly latch for nursing. I pumped for 6 weeks until he finally latched on for the first time.
It was definitely clear to me by this time, that my son’s life was not going to be an easy one. Fortunately, despite all medical complications, he was healthy and strong! He developed like a normal baby until doctor’s noticed that he wasn’t growing anymore at six months of age. This was directly related to his heart condition. His heart was working so hard, that it couldn’t handle growing anymore. So at eight months old, my son was admitted for open heart surgery. I’m not going to sugar coat everything and tell you all that I had peace and faith throughout this entire time. I would definitely being lying. For the first time since I had found out that I was pregnant with him, I was afraid for my son’s life. I knew in my mind that he would be okay; I believed the Lord for this. But my heart ached and I did feel fear.
I don’t think that anything can prepare you for the emotions you will feel when you hand your sleeping child over to the nurses so that they can take him to the operating room. I remember looking at his little chest and thinking this would be the last time I would see it without a scar. They were going to cut my baby open, and work on such a small and intricate body part. My heart broke and ached for the struggles and pain ahead for my little Eli. When he did make it through surgery, there would be the pain and recovery.
Through much prayer and support of family members, Eli and I both made it through his surgery. As predicted by doctors, he had heart-block during surgery, and had to have a pacemaker implanted. Other than that, the surgery was a complete success! It was so painful seeing my baby with all those lines, tubes and of course the big scars on his chest. I wouldn’t be able to hold him and attempt to feed him for two more days. I remember the first time he smiled after surgery. It was a few days after when our pastor came in, and Eli smiled at him. I felt so blessed and was so thankful to the Lord for bringing us through. Just five days after open heart surgery, my son went home with us.
I am continually amazed by the strength of Eli’s little body! He’s always been small because of his heart, but is surprisingly strong. His weight and height have been below the growth charts until recently. Six months ago the cardiologist told us to prepare for another surgery at the beginning of 2009.
We’ve been very prayerful these last months, and the doctors tried an experimental technique of how the pacemaker leads pulse the heart (my son still needs the pacemaker). Last week we went to our cardiology appointment, half expecting to set a surgery date, and something amazing happened. Our cardiologist was freaking out over the growth chart (they watch growth very carefully), and was asking the nurse to redo the entire chart to make sure there wasn’t a mistake. Eli had gone from being below the growth chart (which he had been for almost his entire life), to being in the 10th percentile!! My son, who had always grown slowly and stayed below all the growth charts, had jumped up 2-3 levels. I knew there was no mistake, and they confirmed that he had genuinely had a growth spike.
Next was the examination in the echo room. After 20 minutes of silence from the doctor looking at Eli’s heart, he told us in amazement: “I can’t believe I’m saying this, but it actually looks better. I foresee us putting off surgery for at least another year.” If I was in tears over the weight jump, imagine me after hearing this! “This kind of thing doesn’t happen”, the doctor explained. He explained that it must be a result of how they changed the pacemaker three months ago. Whether it was a direct touch from God, or God working through the doctors’ hands, my son is doing better. He still baffles the doctors with his energy. People with this heart condition just don’t have his kind of energy and strength. Although future surgery still lingers in the future, we have been blessed this day, and I believe in God’s power to heal.
Surgery is a very scary thing, especially when it is your child. I will be focusing my prayers this week on families that have or are going through risky surgeries with a family member (child or adult). Please feel free to leave your prayer requests here in the comment section. I would also love to hear any praises you may have! Praises and testimonies of others are what encourage the rest of us to continue on in our faith.
Thank you all for reading about my son and I hope that you were blessed by his story!