8 Weeks ago (July 2nd) Michelle took Lily in for a 4 month routine baby checkup. Our amazing pediatrician heard a very slight heart murmur and told Michelle that she just needed to take Lily in for a precautionary appointment with the cardiologist. So on July 13th an appointment was made with the cardiologist and they listened to Lily and said they suspected ASD (Atrial Septal Defect- basically a small hole between the top two chambers of the heart). That was sad news but we didn’t know what it really meant but we were told that we needed to schedule an Echo (Echocardiogram) for the next day. After shifting around some schedules Michelle and I took Lily in for the Echo. They simply explain that they are going sedate your 4 month old and that you can see her in an hour, and she’ll be lethargic for a while. After the Echo the cardiologist fellow discussed with us the results and drew a nice picture and explained that it wasn’t ASD, but that it was AVSD (Atrioventricular Septal Defect- whole in the middle of the heart between all four quadrants) and that she would need open heart surgery within in the next month or two. That was kind of depressing, although logically I just thought, “Worrying doesn’t really help, so let’s just see how it goes.” I don’t know if that is healthy or not, but it worked for me. In this case I thought, “What will be, will be. There isn’t anything I can do about this.” The doctor said treat her like a normal child and that she probably will lead a normal life but won’t be an Olympic athlete or anything. She also said that “we had pretty good doctors at Primary Children’s, not the best, but pretty good.” At the time, I thought that was a funny way to not be too comforting. I don’t know what I think about it now.
We went home and explained to Liam and Emma that Lily had a hole in her heart and that she was going to be at the hospital. Liam immediately and surprisingly broke down in tears. And through his sniffles and genuine and loving tears he cried, “but if Lily goes to the hospital, who is going to be here to make me happy. Whenever I am sad, Lily makes me happy.” Emma who has said the same prayer for the last year broke from her rote prayer and asked Heavenly Father to make sure that “Lily would be safe in the arms of Jesus.” We didn’t know what to think about that.
2 weeks after that Echo they called and scheduled the surgery for September 14th. At a weight check on July 30th, she wasn’t gaining weight and she seemed to be breathing faster, so the cardiologist doctor prescribed a water pill and asked for a checkup in a week. When Lily went in to the Cardiologist after she was using the water pill for a week, they decided that because the medication wasn’t working too well they decided to move up the surgery to as soon as possible.
We got a call a week later and said that it would be on August 25th. She went in for a 3D Echo on the 18th (which was difficult to schedule and was done the last possible day for the 25th to work out). Anyway, it got done and they said that nothing has changed and that she’ll go in for surgery on the 25th.
If all goes well, Lily will go in for a PreOp on Monday the 24th and then she’ll go through a 6 hourish surgery on Tuesday and then she’ll be in the ICU for 24-48 hours and then in the recovery room for 3-5ish days, then she will come back home.
I’ve learned a lot through this experience. People care- They show they care when you are going through a difficult time. Happiness comes from relationships- Our relationship with God, our relationship with family and our relationships with friends. The scriptures bring comfort and peace, as do the words of apostles.
I’ve taken comfort in these words of Elder Scott; “The Fall made possible in our lives feelings of both happiness and sadness. We are able to understand peace because we feel turmoil. Our Father in Heaven knew this would happen to us. It is all part of His perfect plan of happiness. He prepared a way through the life of His perfectly obedient Son, Jesus Christ, our Savior, for His atonement to overcome every difficulty that we may experience in mortality.” (https://www.lds.org/general-conference/2014/10/make-the-exercise-of-faith-your-first-priority?lang=eng)
I don’t know a lot of things. My children and wife and family and coworkers remind me of that on a daily basis, but I do know that God lives and all we go through is “part of His perfect plan of happiness.” I believe that plan is an individual plan for me and for each person and the Lord knows what each of us needs to be happy and he fits us with tailor made experiences to help us become what he wants us to become. We’re anxious, and sad, and worried, and our hearts break that our daughter’s heart is broken. My mom would say it is okay to be sad and I thought today that you can’t block sadness without erring with indifference, and so sadness is okay. But despite the hurt hearts we are happy and hopeful and grateful and appreciate all the prayers and kindness and faith.