Norah had her tracheostomy surgery on Friday. Before things began, Jeff and I took turns holding her. We knew it would be our last chance in awhile since cuddle time would be restricted while the trach site healed. She had quite a few procedures beforehand: scopes, intubation, and an MRI. We received good news from all of these things. There were no airway obstructions, she was easy to intubate, and the base of her neck was stable without worries of spinal cord compression. We were able to stay with her during some of the procedures, but not all of them. One of the most surprising instances was when we returned after her intubation. For the first time in her entire little life, her face was canula free. And my goodness, it is such a beautiful face. She was sedated, but clearly comfortable.
We escorted her to the MRI and waited for an hour while she was in there. We then walked with her to the surgery area, but ultimately were shooed to the waiting room for about an hour and a half while they did some more scopes and performed the tracheotomy. The wait was agonizing, but all of our worries were relieved when we saw her ENT doctor's smiling face as he walked through the hallway and into the waiting room to chat with us. It went well without any unwelcome surprises. Though we returned to a still heavily-sedated baby girl, it was such a relief to kiss her sweet face and gently stroke her hair, forehead, and almost-bare cheeks. We were there when she began to wake up with wide eyes before we had to leave during the nurse's shift change. She faded in and out of sleep, but we could tell that she knew her mommy and daddy were there with her. I like to think that it was as much of a comfort to her as it was to us. Being there with her at that moment was priceless.
What did we see when we looked out the window after her surgery? It had been raining outside. We love the rain and the good fortune it seems to bring. Jeff stayed the night with her to comfort her when she woke in pain. The nurses were great at staying on top of her pain management, but I'm sure Daddy's presence was just as much of a help as the morphine.
So what's next? Well, caring for a tracheostomy is quite a bit of work and requires training. I'm not sure when that will be, since she won't be able to come home until she almost doubles her weight. The home ventilator equipment is only approved for infants that are 11 lbs or more. Until then, they'll be monitoring what exactly her ventilation needs will be. I wish I could say that her blood gas tests have been coming back great, but her CO2 still isn't quite as low as they'd like. Right now we're playing the waiting game as Miss Norah shows us what she is going to need.
She will also have her NG (nasogastric) tube changed to a G (gastric) tube that goes straight into her stomach from the outside of her belly. This will make her feeding tube easier to care for, be less irritating for her, and overall more convenient. It will require another trip to the operating room, but I'm a little less worried now that we know she can handle general anesthesia. I'm thinking it will happen sometime this week but I'm not sure.
After the jump below (where it says "Read more"), I'll share a couple of pictures of our sweet girl on the day after surgery. However, please do not post or share these photos elsewhere. I'm not going to post a wide shot of all of the equipment, because they can be really really really difficult for most people to look at. These photos aren't gory or anything, but may be a tad tough to view, so use your own judgement before clicking below. In the photos after the jump you can see the tracheostomy and a bit of the tubing... but of course mommy and daddy can only seem to see her sweet face.
Thank you all for your continued support and kindness.