Seven years ago tonight, I arrived at the hospital to get induced for labor at 36 weeks. It was a fearful night full of unknowns and insecurity. The birth plan was for the baby to be born the next afternoon, so she could be taken to the NICU for care before the shift change for the medical team.
I didn’t know if the next day was going to be the worst day of my life: would we see our newborn and begin the medical care to bring her home soon, or were we going to leave the hospital with news that every parent dreads?
For 16 weeks, our family prepared for the best and the worst. When we first found out that our 20 week fetus had a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), we were terrified from the news and prospect of how we would be able to navigate the future. Doctors sat us down telling us the hardships ahead: surgeries, emergencies, hospitalizations, oxygen saturation, weight and eating issues, feeding tubes, etc. We were lucky to have found out early on, because she could get timely intervention after birth. In some unfortunate cases, the condition is discovered after birth and doctors can lose valuable time to give appropriate care. If no surgical intervention is involved, the condition is fatal.
After the first surgery, the most precarious time would be the first year with survival rates of 20-60%.
Our faces turned white and breathing short. After the doctors explained the diagnosis of this condition, we were counseled with the option to terminate. Feeling like I was in a dream, I had to ask the doctor how much time I had to decide. Chris and I said nothing to each other on the drive home. We picked up lunch, ate at home, and took a nap. Elliot, 1 1/2 year old at the time, was mad that we had the audacity to nap and not give him attention: he came over and bonked us on the head with an empty plastic milk carton. That was his nonverbal cue for ‘I want milk.’
It took us a few days to process the news. We didn’t talk about it, and when we finally discussed it, we both agreed this baby was God’s special gift and he had good plans for us: difficult but good. And the rest is history. It’s been indescribably difficult with lots of unexpected hospital trips, constant nightmares, depression, and a heart held in fear of the worst.
Yet in the storm, God has blessed us so much through her. We call her the ‘game changer,’ because our lives turned upside down when she arrived. What we foresaw for the future stayed in the plan phase. I couldn’t have imagined this kind of life or have wanted it, but now I can’t imagine something different. In difficult times God never lets us down. This is weird to say yet some of my fondest memories are these hospital stays, which made me realize that memorable moments do not only mean happy experiences but hard ones too. We talk about those times with tenderness, disbelief, and humor in recalling what happened. On occasion, Elliot still talks about the day I cried and had to drop him off at our neighbor’s house when I had to drive Ellis to the E.R. He says the chips he had with our neighbor that day was the best ever.
These experiences try our spirits and stretches our faith. We kick and scream, metaphorically, when we think Ellis is getting sick again casting a dark gloom over me. Chris knows that I get super sensitive and start yelling. Don’t ask: I just do because he asks questions, that seem non-common sense about what to do. We know this is my coping mechanism, so he’s aware it’s not a personal attack.
But I love my little girl with her funny laughs, wild hair, and spunkiness. The best is when she hugs me and loves on me at random times. One time I had a nightmare and cried in my sleep. It was late at night but she woke up, turned over, and patted me on my back saying, “Mommy, it’s okay. You’re just tired.” The she fell back asleep. It’s like she was the comforter that night.
We’ve been through a lot together and have seen each other at rock bottom. We’ve cried holding each other for different reasons, but fear was the underlying motivation. But when I feel her warm arms around me, I’m reminded how God has made her stronger and bigger all these years. A miracle.
God had different plans for us; plans we wanted to refuse at first. Still, we don’t know what the future holds but we trust God by looking at how he has brought us through the sudden storms. Moments when my heart drop from terror of the worst outcome, I can do nothing but sigh and give it to God. I don’t do this because I’m super holy or have great faith. The weight of the issue drowns me and it’s so deep that I can only give it to God for keeping my heart safe.
Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!