This week Izzy went in for surgery for her G-tube. After almost 8 months of having an ng-tube, we were ready for a change-the idea of something that wouldn’t require replacing every day sounded amazing. The surgery went well, and quickly, requiring only an overnight stay. The tube site looked good, and only leaked a little. She was able to take her feeds, but ended up throwing up at the last one. We all chalked it up to her tummy not being used to eating the volume after so many hours of not having anything in it.

Thursday and Friday, she continued to throw up and we found her tube site leaking more. By Friday afternoon, the site was leaking so much, anything we put in would run out of her and soak her outfits. We ended up going to the emergency room after her 8th change of clothes in almost as many hours.

That was Friday, and here we are Monday, still in the hospital. We still don’t have answers for why she is leaking, but at least the vomiting has stopped. The nursing staff has been amazing, the surgery teams…well…lacking at times, but we’re finally getting people to figure out what is happening to her and why. Tests are being run, and we continue to find the best way to feed her. We try.

In the mean time, Nick and Izzy snuggle and we play and wait. Happily, there’s these amazing breakfast sandwiches that are only made from 1-4 am-we were happy to have those last night, between bouts of demanding to talk to someone about why things are wrong.

We remain positive, it’s hard sometimes, but we keep going. Here’s to getting out of here one of these days! In the mean time, we’re at least able to relax and hang out with each other.  To help pass the time, I brought my lap top, a cook book, cooking magazines, yarn and crotchet needles. One of these things should help pass the time!

How do you spend time when you’re stuck somewhere?

Best,
Raina

It has been so gloriously sunny here, much longer than it normally is in Seattle. The days are still long, and we’re seeing temps in the 80’s and high 70’s. You can tell that fall is coming, but for now, summer is holding on with everything it has.

With Tiny’s surgery coming, I wanted to get her out of the house to play. I needed to step away from all of the cleaning and prep work to get into nature and see some sea critters.  We decided to go play in tide pools. We got there as the tide was starting to come back in, but we were able to get a good 45 minutes of play time. Izzy was more interested in the other kids, and the waves than the sea stars, but she played along while I climbed over rocks and plodded through seaweed beds.  There were so many sea stars, some bigger than my head, in a variety of colors, some slowly moving their suckers, trying to feel out where the water went.  It was a good way to get out and clear my mind and enjoy a misty morning.

I’m looking forward to more trips to local tidepools!