I started my normal routine, prepped Hope's meds and got ready to give them to her. When I checked her tube placement, I couldn't get any stomach contents to come out. I kept trying but couldn't get anything to come back and wasn't sure that it was still in her stomach. I called the hospital to have them trouble shoot with me. They told me I'd have to pull the tube and insert another one. I can't do this on my own, so I called the neighbour to come over and help me. Thank the Lord he was working from home this week, also that his daughters had feeding tubes as preemies and he was pretty comfortable with it all. Not sure how comfortable he was with my pj's, greasy hair and morning breath though, he was a good sport!
We inserted a new tube, it came out her mouth. We tried again and it went in and all seemed to be okay. When I checked placement...I still couldn't get any stomach contents. So, the hospital wanted Hope to come in and have an X-ray. Hope was screaming, she'd been tortured all morning and was also starving. Sadie had woken up in the process and wasn't happy about Hope crying. She looked worried and could sense my stress, she also kept asking me for breakfast.
I had to call Shawn, he came home from work and took Hope to the hospital. I would have left Sadie with the neighbour and taken her myself, but I needed to pump in the worst way. The X-ray showed that her tube had gone down, kinked and was turned back up at the bottom. They pulled the tube again and inserted a new one, poor Hope. After that, they gave her the food I'd sent along and the rest of her meds. Unfortunately by this point they were 2 hours late. We've had to adjust our entire feeding and med schedule now, it's not the end of the world but it's an adjustment to our routine again.
Clearly the Lord knew that my dream of baking muffins was not a reality. Someone dropped off some delicious blueberry muffins at the house in the morning, and the mailman brought a package full of muffins from Saskatchewan! It always makes me smile when God brings things at the perfect time to remind you that He's in control, not you. My morning didn't turn out as I'd planned, but I still had a good supply of muffins for Shawn!
A friend picked up Sadie in the afternoon and took her out for an adventure. It allowed me to have a shower, get dressed finally and pick up a few things around the house. It was a great break and after a quick nap, I felt like a new woman and ready for another day of adventures with Hope.
Addendum: This is Amy's mom, Charlotte.......an hour after Amy wrote this blog, they had more problems with Hope's feeding tube. They had to pull her tube and re-insert another tube because they couldn't get any stomach contents to come out again. That tube placement failed and another had to be put in. Before their third try, the cardiologist was called and he said that, if they were unsuccessful with their third attempt, Hope would have to be re-admitted into hospital. Well, the third try seems to have worked but it's not totally successful. She was able to get a minuscule amount of stomach fluids to make sure it was in her stomach and able to proceed with her feed, but something's just not right. The tube may be hitting the stomach wall which is causing these kinks for some reason. The cardiologist has said you can't have too many of these failed attempts because hitting the wall of the stomach causes bleeds and this can be dangerous because of the blood thinners Hope is on. If there is any problem, whatsoever, with the next feed then they have to take Hope into the hospital and they will be re-admitting her to figure out why they are having these problems.
Please pray that this tube will stay in and, if it's not in a good position, that it will miraculously move into the correct position so that the feeds through the night go smoothly and without any problems. Pray that this will not be an ongoing issue and that Hope will not have to be re-admitted. Another hospital admission exposes her to more risks and germs and would be so hard on Amy and Shawn. Pray that Hope can stay home with her family : ). Thank you for walking this road with us.....