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. #FacesofCHD
I was pregnant with our second daughter and I was 38 weeks pregnant. I thought that she would be late too, since my first daughter was a week late, but then at 10 pm my water broke. I was very anxious and nervous because I was hoping to have a VBAC this time and was unsure if that would actually happen or not. I went to the hospital and everything was going fine, I labored for 6 hours, and knew I had to push. The doctors came in and confirmed that she was coming. When I had given birth to our second daughter Emma, I knew something wasn’t right, she had apgar scores of 0,0,7. She was unable to breathe on her own and her heart was not doing well. They had to perform CPR and put a breathing tube in her. Hearing nurses yell CPR is something you never think could happen to your brand new baby. The image of them performing CPR on her is engraved in my head, and something I wish no parent would ever have to see. The team managed to stabilize her but her oxygen levels were very low without support. Emma was taken into the NICU to figure out what was wrong with her and that took several hours. Eventually they managed to find an abnormality on an echocardiogram that hinted at a heart problem.
To get Emma the best possible care, she was transferred from Irvine to Children’s Hospital Los Angeles hospital that specialized in the heart. They were going to take her by ambulance up there, to assess and work on her there. We were then able to go see her in the NICU while they were getting her ready to leave. I remember just saying lots of prayers, and my husband did a quick blessing. I couldn’t even hear it but I knew she would be taken care of. I remember seeing them wheel her away, there were more tubes in the incubator than her. My husband rushed to the hospital in LA while I waited to be discharged. It was so hard for me to just wait at the hospital and not be with her. The OBGYN came in to talk to me on how I was doing, and to inform me that I had to wait till 7 pm to be discharged. It broke my heart because I wanted to be with her so bad.
Once at the new hospital, they managed to diagnose the specific problem she had, which is “total anamolous pulmonary venus return.” In simpler terms, the veins that bring oxygenated blood back from the lungs into the heart were not attached in the correct spot. Because of this, Emma had a tough time getting blood and oxygen to the rest of her body. They had to perform open heart surgery to fix the problem.
Once that was all figured out, Emma was rushed into surgery around 6 pm. She had open heart surgery 12 hours old. I was able to talk to the OBGYN, and they let me get discharged early so I could go to the hospital to be with her. I was so grateful for being able to get discharged 12 hours after giving birth. The 3 hour surgery went well, with no unexpected complications. Emma was somewhat stable, and put on ECMO, a life support system that helps her heart pump and helps her breathe. She was sedated, but showed some improvement in her acidity level. It was very hard for me to see my baby girl with all the tubes and wires that first night. It was even harder for me to leave the hospital without my baby. You hear how wonderful births can be, but mine was very different. I felt so sorry for her and everything that she had to go through. She was on that amazing ECMO machine for 5 days, and then she was on a breathing tube for 20 days. Then we were able to hold our little girl for the first time. During that time she started to have some arrhythmia. So she was put on medicine to help with that.
She was at the hospital for 44 days, and then we were able to take her home to meet her older sister. When we took her home I was so nervous, she always had nurses with her and now it was just us. We also had to give her 7 different kinds of medicine to her daily, and I felt a lot like a nurse to her.
She now goes to many doctors appointments with her cardiologist, occupational therapist and general practitioner. Emma also is taking medicine to help her with her arrhythmia. By just looking at her you can’t tell all that she’s been through, but once you have to change her clothes and you can see all of her scars from open heart surgery and her chest tubes. She is our little miracle baby that has such a fun, cute personality. She is now a happy 2 year old. Emma has helped me to become a more patient mother. I never thought that this would ever happen to one of my children, but it did and it just made me stronger, and I’m grateful that we are the lucky ones that are able to watch her grow and learn. I am now pregnant with our third child and this pregnancy has been very different since having a child born with a heart defect. I am considered a high risk pregnancy and I get more ultrasounds done. It’s also been really hard emotionally for me, and having a lot of worries if we will have to go through the same thing. I know the doctors are trying their best to make sure to find any abnormalities but I feel I won’t be able to feel comfortable until our child is born and checked by a doctor.
CHD awareness means a lot to me, because before Emma was born I had no clue about defects and defects with the heart. As soon as she was born we entered into a community of people that had already gone through the path we were just entering. Now having a child that had heart surgery I want to help others learn of what to ask a doctor during pregnancy and after and how to look out for abnormalities of the heart. I’m forever grateful for the community of other heart friends that I’ve been able to get support and advice from that has helped us go through some of the hardest times in our life.
I started writing a blog to help family and friends know about updates on Emma and heart events near us.(http://achildlearninghowtobreathe.blogspot.com/)
I’m also on instagram @imadeabuntcake
– Kacie (Emma’s mom)
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