Giuliana's Off The Ox!

This is so bittersweet for me. I spoke with Giuliana's ENT yesterday, and he agreed it is time to take Giuliana off the Home Pulse Oximeter. I just wish I felt better about our decision. On Thursday night when I put Giovanna to bed, I checked on Giuliana who had already been sleeping for an hour. One of my biggest fears came true. It had happened once before, but it was as she was falling asleep, and I thought it was a fluke. But it happened again, and it's 2 times too many. The cables from the Pulse Ox were tangled around her torso and tightly wound around her neck! I tried to stay calm and untangle her. Surprisingly she stayed asleep, but then I was put in a bad position. Do I keep her connected to the machine that alerts us if her levels become unsafe and risk her becoming tangled again and choking, OR do I take her off the machine and risk her tongue blocking her airway and not knowing because there is no alarm to tell me?

I sent Joe a text message, and luckily he was on a layover so he could respond. We decided there was a greater risk of harm if we left her connected, so I unplugged her. The next day I called the ENT to discuss this situation and tell him we feel it is no longer safe for Giuliana to be on the Pulse Ox. The doctor wasn't in until Monday, and after discussing it with our moms, we still felt it was best for her to be off the machine. So we tried over the weekend sleeping unplugged. Last night, Dr. Walner returned my call and agreed she has been on the machine long enough, and now that she moves more in her sleep, it is no longer safe for her to be connected.

I've waited 6 months for this moment, but it is more difficult to accept than I am happy about the situation. While Giuliana proves to us daily how well she is doing, I've become dependent on the machine and there is the fear in me that something will happen because she isn't plugged in anymore. Since she was born, the doctors always tell us the worst that "could happen" and the Early Intervention people made me feel like I had something to be afraid of, that I'm scared. In my heart I know she's going to be ok, but in my mind I struggle. I keep telling myself, now she can wear zipper jammies, and I smile a little bit.

Giuliana now drinks with a cup and straw!

And she loves her Banana Gerber Puffs!