I’ve been going back and forth on if I wanted to write anything before we go to the hospital. If you are on facebook or Instagram you’ve seen what we’ve been up to. Seeing the giraffe’s and the elephant orphanage. Eating our way around Nairobi. I had set up those few days in Nairobi to try and distract myself from what was coming. Though I could still feel it. In the fun and excitement of Nairobi something loomed over me. It sat on my shoulders and weighed me down. It casted a shadow over my head. It slipped in through all the cracks.
I’m afraid. I’m terrified to be honest. Why is it my baby girl? Why was she born with this condition? Why do I have to place her in the hands of a surgeon at a mere 6 months old. She’s not even 12 lbs yet. She’s still so tiny and fragile.
Though we were told upon her birth she had a heart murmur, I didn’t think twice about it. They didn’t recommend anything else, they didn’t set a follow up.
She had symptoms from the start; we just didn’t quite know what we were looking at. The symptoms are so subtle for her type of defect: constant feeding; falling asleep quickly when eating, but not staying asleep very long before needing to eat again; sweating while feeding; fast breathing; trouble growing and gaining weight. It was so easy to explain these things away, which is what I did. Breastfed babies eat frequently, so intervals between feedings don’t matter. Some babies are not sleepers. I’m so hot all the time so she’s probably just sweating from me. Babies breathe faster than big people. It was all so dangerously easy to explain away. CHDs can be subtle and insidious, even when your baby’s heart is literally failing. We were incredibly lucky that the delay in diagnosis didn’t cost her her life.
Even when we finally received her possible diagnosis, at just over two months, I didn’t yet start to worry. But that day in the cardiologist’s office in Dar es Salaam, when I heard the words, “your daughter will need surgery”, my world collapsed. Every moment of every day I worry. I know I shouldn’t, please don’t write to me and say things like “Don’t worry, God’s in control.” I know that He is. And trust me, I am trying to surrender everything to Him. But if He decided to take my daughter home, how would I handle that? I can’t even begin to think without tears.
We meet with the Dr(s) tomorrow. From there they will give us a surgery date (within the week). I will update when I can.
In the meantime, even if you are not on facebook or instagram, you can follow us on http://www.instagram.com/kellymarietz without an account.