3-5 months. That’s what they told us for surgery. And we’re right on track. Ondine’s molding is going exactly to plan. And we are now scheduled for July 25th. She will be 17 weeks old.
You know, caring for a new born is never easy. I want to slap moms who say to me it’s the most beautiful thing they’ve ever done. While every day I love my daughter more and more, it’s also the hardest thing I’ve ever done. Compound the regular care schedule with weekly hospital appointments, add a combination of pain and uncomfortable medical devices that must be worn 23 hours a day and then you have an idea of what this takes. We are by no means the only parents with children who have special needs. But I’ve also noticed that not many people talk about those needs or problems. I’ve been directed to find support groups that sound more like an AA meeting than supportive parents who are going through the same things.
This week Ondine was given the additional nasal part of the molding. The tissue inside her mouth has moved nicely and the gap is now less than 5mm apart. They congratulate me on the progress and discuss the next phase: adding two pieces if metal to hold her nostrils up.
Up until now, Ondine has really only been bothered by the tape. She sleeps through 90% of her appointments. Not this time.
Ondine dozed once we had the device out for molding, but it was only temporary. The metal pieces are attached to little soft waxy pieces that look like lima beans. Her nostrils sit on the divet while the bulbous part pushes up on the inside of her nose. This is to form her nostrils for breathing and cosmetics. Ever had a pencil up your nose when you were a kid? Now imagine being an infant that can’t complain with words. So you scream.
It’s her most stressful appointment to date. I pick her up and cuddle her, bouncing a bit to comfort while I listen to the doctor explain where we are and where we go from here. I look at my pretty girl, her device looks more like a mask now, like a little baby Bane or something. While I hate every minute she has to wear it, I also realize it’s essential for her to be prepared for surgery. So I bite back tears and carry on, thankful she wont remember anything.