Just a heads up– if you’re a really squirmy type and can’t handle anything medical, then you’ll want to skip this. It’s all pretty mild stuff, but it shows a feeding tube and some weird medical things. No blood, and nothing gory, though.
Four and a half months ago we arrived at Zane’s orphanage on a cold day, with ice and snow on the ground. We were scared. It had been months since we’d last seen him, and that meeting was kind of a disaster. He has a lot of strong opinions about strangers, and we were strangers. We knew once he learned to trust us then it would be much better, but we had no idea what to expect on that day.
We walked in this time and he didn’t cry. He didn’t scream. He didn’t run away from us. He smiled. They introduced him to Hazel. Kaka is the term for sister over there (yep, we are fully aware of what it means everywhere else!). Months earlier we’d left pictures of our family for him to get familiar with, and maybe they showed it to him daily… maybe that was the difference? We have no idea, really. But we know God was in it all.
That first week was SO HARD. We were in Bulgaria, where we didn’t even understand the alphabet. I couldn’t phonetically sound out a word, and the only Bulgarian words I knew were hello, thank you, and hurry quick! And sister, of course. Many Bulgarians could speak some English, but it was still really difficult to communicate. Heck, we could barely describe Zane’s needs in English, let alone trying to communicate in Bulgarian.
Our biggest struggle– even more than bonding or tube feeding– was his spit fistula. To put it bluntly, our son has a hole in his neck where his esophagus empties out. When he swallows, spit empties out on his chest. It’s mind boggling, and it’s very rare. So rare that there really isn’t a ‘best practices’ on how to handle it. In the orphanage they wrapped cloths around it, and they sent us home with lots of diapers to wrap around it to catch the spit. We took various stoma bags with us to try those out– they are little bags that attach to the skin and hold the spit until you empty it out.
The first time I put it on, I cried. It took about an hour (now it takes about 5 minutes). I thought I glued his spit fistula closed at one point. Zane was screaming, I was about to hyperventilate, Josh was a mess, Hazel was trying desperately to help us all. All I could think was that we’d have to go to a Bulgarian hospital and figure out payment and try to communicate his medical needs in a different country without a translator.
We’ve come a long way, and in one week, the spit fistula will be gone. He’ll have his very own esophagus, created from parts of his own body. It’s a miracle in every sense of the word, and we are incredibly thankful for Boston Children’s Hospital. But before his life changes drastically again, we wanted to document this stage. It’s only 4 years of his life, but that’s a long time, and we didn’t want to forget it. We also wanted to be able to show him when he’s older.
This is our central location for all his medical stuff. We had it in his room to start, and quickly moved it to the kitchen. There’s a little area away from the rest of the kitchen and we set up camp. There are so many dressing changes and medical supplies, and we needed to be somewhere with quick access to a trash can, a sink with soap to wash our hands, cups, syringes… the kitchen was the most central place in the house, and this is our best attempt at keeping the mess at bay! He’s 100% tube fed (since he doesn’t have an esophagus), and so we make all his food. It’s like making baby food, but we do really hearty mixes and we make a lot of them. We freeze and store them in breastmilk bags since they’re already food grade and freeze well. He has 6 of these each day!
These two melt my heart! This is now printed as a 16×20 in our living room: Hazel has been such a great big sister! She shares well, and she made this sign soon after he came home. <3