At Motherlift we want to tell stories that inspire, educate, and remind you: you aren’t the only one. We want to allow women to share honestly about their experiences without all the fear and anxiety we usually find on the internet. We will be posting stories of joy, anticipation, surprise, grief, endurance, and most of all, strength. Consider this blog a place to listen to a friend’s experience of motherhood.
This is Morgan’s story. She has 2 girls and when she gave birth to her second she discovered her daughter had 3 congenital heart diseases and would need open heart surgery at 5 days old. Her story is one of joy, grief, and perseverance. Kid’s Names & Ages: Eowyn – 7 & Lyanna 1.5 Type of Birth: Scheduled Cesarean What does “motherhood” mean to you? Motherhood means loving another person more than you thought possible. It means caring about somebody else’s well being above your own.
Was there anything unexpected, traumatic or significant for you in the process of becoming a mother? When my second daughter was born she swallowed fluid and her oxygen saturation levels were being monitored. After about 5 hours, her nurse discovered a huge gradient in the saturation levels in her foot versus her hand and they took her away to check her out some more. The pediatrician who assisted in my C-section came in to tell me she thought my daughter had a heart defect and they would be airlifting her to a children’s hospital. I had to stay behind and recover and wasn’t released until the following day. It turned out she had 3 congenital heart diseases (CHD’s) and would need open heart surgery at 5 days old. How did you cope with these changes (i.e. tools, support system, resources, professionals, medication)? I relied heavily on my support system. My husband was there with me whenever he could be and our families were there as much as they could be. I asked as many questions and made sure I understood what would be happening and why. Later I joined CHD (congenital heart disease) organizations and spoke with others who had similar experiences.
How did you change in the process of your experience? What do you know about yourself now that you didn’t know before? My faith grew stronger. While I felt worried, I also felt a sense of peace and knew God was in control. I know now that I am strong enough to handle something I could never have fathomed before it became reality. I will give my all for my children. What was the first thing you felt when they gave you the news? Broken. I stared at the pediatrician in shock. She saw I was holding back my emotions and told me it was okay to cry and she cried with me. Lyanna was still in the nursery and I asked if I could see her again before they took her away. I had an overwhelming fear that the next time I saw her she wouldn’t be alive.
What was something meaningful someone said or did for you during this time? There were so many things. The pediatrician’s empathy when she told us meant a lot. We had people we were barely connected to reach out to us. A friend of my brother in law’s sister sent us a note about her son who had been born with a heart defect and a lion lovey for Lyanna. An old friend’s step mom found us in the CICU waiting room after surgery and delivered a care package from a foundation called Wyatt’s Warriors which was founded in memory of a baby who passed away because of TGA, Lyanna’s main defect. Our pastor and parents all sat with us during the surgery. So many people reached out to check in on her and offered financial help. It was really amazing to see all the support and it felt like God was telling us we weren’t going through it alone. Tell us about the support group for CHD you joined. There were several support groups I became a part of. The Pediatric Congenital Heart Association, The Children’s Heart Foundation, Mended Little Hearts, a facebook group for patients and parents of TGA babies. I mainly followed all of them on Facebook. They share statistics, resources, and discussion about CHD. It was really helpful for me to see others who had been through it and to see some of the kids grown up and doing well. Did you have any specific words, thoughts, or phrases that you used as a mantra to pull you through? I prayed a lot. I learned the term Heart Warrior which is what people with CHD are referred to and that was comforting. Nothing seemed more fragile than my 6lb newborn baby and thinking of her as a warrior made the thought of her battling for her life seem a little more manageable. There was one point when we had a 6-8 hour critical period and the surgeon told me “If she makes it through that she’s going to be alright.” I changed the phrase to WHEN she makes it through and repeated that to myself.
What does life look like for you now? Life looks normal to me now. A few more appointments than what others may think of as normal. I know a lot more cardiovascular terms than I ever thought I would. My child sees cardiologist and is followed by a neurological team because CHD kids are at greater risk for developmental delays. I’m aware that just because she was ‘repaired’ in no way does that mean she is fixed and her battle will be a lifelong battle. All of that has become normal and I couldn’t be more thankful for where we are now. How is Lyanna now? What is she like? Lyanna is doing great! Medically, she has a couple of things the cardiologist is keeping an eye on but nothing that needs intervention now. Her pediatrician is really happy with her development. She’s walking and talking and doing all the normal toddler things. She is such a joy with an easy going personality, I like to say she got the drama out of the way early. She repeats almost any word she’s asked to say. She likes sitting in a lap and reading. She has reached the toddler independence stage and wants to do everything herself. She likes running around after her big sister and helping in the kitchen. She’s basically perfect, I wouldn’t change a thing about her. Any closing thoughts, words of advice, or resources you want to share? “Treat her like a normal baby and let us worry about the not so normal baby stuff.” Those were the words Lyanna’s cardiologist said to me the first day I met him. She was 1 day old and I had just finished asking him an onslaught of questions about her future, many of them probably just different variations of the same question. Those words changed my outlook. I can’t control the not so normal stuff so there’s no reason for me to dwell on it. Lyanna is just like any other child and I plan to treat her that way.