February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD
Ruby Jane was born on June 5th, 2013 at IMC hospital in Murray, Utah. We were overjoyed to have our baby here! The baby we had prayed for and wanted so badly for two years before becoming pregnant with her. One of the first questions we asked the doctors was if she had craniosynostosis, like our Bailey had when she was born. The answer was no, and we were so relieved. We didn’t want to re-live the surgery that Bailey had as a tiny 2 month old. When Ruby was 2 days old, we were told that she needed an echocardiogram because the pediatrician in the hospital was hearing a significant heart murmur. It is normal for babies to have murmurs when born but he was worried about how loud it was. We were still in the hospital because I had her via c-section. She had her echo and that afternoon the pediatrician came to talk with us. He had sent the echo results to Primary Children's Hospital and they got back to him, telling him that Ruby had a rare heart defect called Tetralogy of Fallot, and she would require open heart surgery at some point. He was trying his best to explain it all and nothing made sense--he was no cardiologist and we were no “heart parents”. All I could think was how my precious baby was perfect. I was so extremely sad for Ruby. I called my mom and sobbed to her over the phone, and she cried with me. My mom told me not to get online and research it. Initially I didn't hop online, but Dillon did and landed on a blog with bereavement pictures--he didn't tell me this at the time (wise man). Shortly after, Dillon left to get some dinner. It was late and getting dark outside. I held Ruby, grabbed my laptop and typed in Tetralogy of Fallot. We had asked the pediatrician to spell it for us three times so I knew what to type. I was alone with Ruby for about an hour and it was one of the darkest hours I’ve had. I kind of just lost it and cried and cried. I held Ruby as tight as I could and prayed as hard as I could. Dillon got back and could see that I was not doing well. He took Ruby from me and sat on the bed and rocked her. I was just so worried that we would lose her. Dillon knew just what to say--he comforted me and said it was ok to be sad. And then he told me, “Christie, this is how God sent her to us. This is the way He wanted her to come.” And that’s all it took for me to feel an immediate peace. My sweet husband’s words came back to me again and again through the following months and really strengthened me. I still lost it, I still had moments of breaking down. Since then I’ve come to an even greater realization that God didn’t want her to have the heart defect–of course He would not want her to suffer. But through the trial we were all given, we would learn things that we couldn’t have otherwise–and He allowed for her to come with a broken heart so we could change for the better. The coming weeks were filled with doctors appointments to Primary Children’s Hospital, echocardiograms, EKG’s, chest x-rays, weekly weight checks and oxygen saturation checks. By the time Ruby was 26 days old, I had taken her to 15 doctors appointments in a 22 day time frame. We were told to expect 3 surgeries based on her first echocardiogram. At least. That was the average for Tetralogy of Fallot.
We finally seemed to get into the routine of things by the time she was 2 months old. We were told not to let her cry hard, and certainly not longer than 5 minutes or she could have a blue spell--meaning she could pass out due to oxygenated blood not being able to get through her body enough. The goal was to make it to 6 months for surgery for weight and size factor, but not to go much past 6 months or the heart wouldn’t be able to correct itself as well. Ruby was doing well, apart from her weight gain. She was happy, healthy, and her oxygen saturation was always in the 90’s, which was so great for a heart baby. She had so many people praying for her. I knew it could be so much worse--she could have had blue spells, she could have had her oxygen saturation dive down and needed surgery sooner, she could have needed oxygen or a feeding tube, she could have been born blue and life-flighted to PCH...so many things that could have gone wrong and they didn’t. We were so very blessed. The older she got, the more signs of heart failure she had. Sweating while she ate, being extra tired, and some weeks she actually lost weight which was scary because they talked about moving surgery up if she stopped gaining. Every ounce was a celebration :). We had a sedated echo November 21st and they said the pressures in Ruby’s heart were really high. In her right ventricle they were in the 80’s (it should be zero. 80 is labeled as severe). But they also said that her pulmonary valve was looking really good--better than the previous two echocardiograms. We were called a couple weeks later and told her surgery would be December 17th with Dr. Eckhauser. Ruby’s surgery approached and we tried to be as prepared as possible. People continued to pray for us and even as life got insanely busy and more trials and tests came our way, we were blessed with continued peace. We went to Primary Children’s Hospital Tuesday morning and within an hour handed her over to the anesthesiologist. She looked back at us as they headed through the doors. We received calls about her during surgery: When the incision was made, when she was put on bypass, when she was taken off bypass (two hours later), then the surgeon came in to talk to us about all he had done. Waiting during surgery is very emotionally draining. The hole in her heart they knew was big, but he started patching it and realized there was a much larger hole behind the one he was patching. So he had to un-sew it and start over. Which is why she ended up on bypass for so long. The right side of her heart was significantly thick, so they had to shave some off the outside as well as cut into her heart and shave some off of the inside of the right ventricle. They tied off her PDA that was supposed to close shortly after birth and partially patched a hole in the upper chamber. They had to sew through her tricuspid valve because the hole was so large in the bottom chamber, but he was hoping as it scarred it would close that up. He did a lot of work-- more than they anticipated. We finally got to go back and see her at 12:50 pm.
Nothing can prepare you for what you see after such a major surgery. It is heartbreaking. She was intubated still and just hooked up to so many things. Unfortunately, she was in pain, indicated by her not sleeping like she should have been. She was very restless and just moaned and moaned in her sedated state. I asked the nurse if it was because she was in pain and she said she most definitely was. What a helpless feeling, not being able to comfort your baby or hold them. So very hard. That night was very awful. We were lucky enough to get a room even though everyone had told us to go home and sleep because patients are totally sedated and sleeping that first night, but I could not leave her there and Dillon felt the same way. Dillon went to sleep first and I stayed with her--she was so restless. The nurse was very frustrated because she only wanted her to be comfortable and she wasn’t. Ruby started to itch a lot too and her little face became really red and swollen. I am so glad we didn’t feel like we could go home. I cannot imagine her being awake so much and not having Dillon or I there. I slept for about 4 hours after Dillon woke up and when I came back Dillon reported the same as me, that she was just miserable. The second day was probably even harder. They kept trying to get on top of her pain and itching but she had little relief. She didn’t sleep peacefully hardly at all. On the second day they took out the Right Atrium line, an IV that went directly into her heart. But it bled. And bled and bled. It wasn’t supposed to. It bled for at least a couple hours. More and more people started to gather in her room and check the chest tube drainage and talk about what needed to be done. My brother-in-law Greg happened to show up just at this time. Next thing we knew, there were probably 7-8 people in there. Dillon was outside the room talking to Greg. The nurse practitioner turned to me and said, “The RA line tore her heart and it’s bleeding and she’s losing too much blood. The bleeding is not stopping so we will have to go back in and repair the tear.” I went out to tell Dillon, in tears. He was in tears too now, and came back in the room with me while Greg waited outside the room. The surgeon was called down and more people came into her room. They looked at the drainage and the amount she’d lost and Dr. Eckhauser looked at me and said, “If this bleeding doesn’t stop in the next 20-30 minutes, we’re taking her back.” I tried not to look too scared, but I think I failed because he tried to calm my fears and said, “It’s ok...it sounds worse than it is. I just have to unstitch her, take the wires out of her sternum and patch the tear.” She had already gone through so much. I was so worried for her poor little body and the setback this would be to her. I turned to Dillon and whispered, “Pray hard!” We were so scared. The bustle of people continued and we knew she needed a blessing. So Dillon grabbed Greg and they gave her a blessing. The nurse checked her chest tube drainage and there was a difference already--literally within 5 minutes of her blessing. The surgeon came back and saw that the bleeding was slowing down. They continued to monitor her but decided that the situation was no longer of concern. What a blessing. She continued to improve and we were able to bring her home in time for Christmas! Miracle after miracle. We are not positive this will be her only open heart surgery, but they are hopeful. There are many problems that can crop up in her future, which is why she will continue to have cardiology check-ups for her entire life. She also had some unclear genetic testing results, but there was not enough research done on them to know what they may mean for her. But we are thankful for how well she is doing. We are enjoying every second with her. She is such a blessing to us!
Ruby Jane is now 20 months old. This picture is from when she turned 1 :)
What does CHD Awareness mean to me? It's letting people know that it can happen to anyone, and it is much more common than people realize. We were so unsuspecting, so in the dark about the heart world. CHD Awareness is encouraging people to donate blood and to make sure to get newborn screening done using pulse oximetry. It's helping others to hopefully trust themselves and get their child checked if they feel that something may be wrong. It's encouraging others to become organ donors, and to make decisions now as to whether or not they would allow their own children to be donors if that unthinkable decision had to be made. It's pausing our busy lives to give of our time and efforts to help those around us who may be living a nightmare in this heart world. It means helping others see the faces behind CHD, touching lives and hopefully making a small difference through sharing Ruby's story, along with others' stories. CHD Awareness means that I will forever be passionate in helping Heart Families feel any sort of peace. There is no cure. And more research needs to be funded.
I've recently set up a blog that encompasses a small portion of CHD Awareness, called Love From Ruby. You can also visit me at Lemon Squeezy Home and instagram @lemonsqueezyhome.
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