After a long week we are finally home. On Wednesday, November 4th Annabelle had surgery for the placement of a feeding tube (g-tube, PEG). Everything went smoothly and the surgery took just over an hour. She was in a bit of pain while waking up but we were there with her to give lots of hugs and kisses.
We moved upstairs and found out that she would not be allowed to eat for 24 hours. She didn't understand and it was hard since she kept asking for milk and food. Every nurse that came in would ask "is there anything I can get you or you need?" and she would sign eat or drink. I think she thought maybe one would finally give in.
She has been tolerating her feeds great, no issues at all. The act of eating is still confusing to her so she is asking to eat while being fed. I get out something and after 2-3 bites she is done. I'm sure it will take some time but eventually it will all come together.
They mentioned going home on Friday but it just didn't seem right in my gut. So, we stayed an extra night and were discharged around 2pm on Saturday. We had training on the pump and all the equipment, training on the tube and how to clean it (and emergency replacement), and our feeding schedule to get her up to the caloric intake she needs. It's overwhelming but I have an amazing team and Brian has been helping with everything.
We were so lucky that the new Golisano Children's Hospital just opened a few months ago. We were on 7 South and all the rooms were private and beautiful. There was a huge play deck where the kids can run around and a play room with tons of toys. We had lots of visitors for only being there 3 days so the room was rarely quiet which was great. The nurses were beyond amazing and of course were in love with our girl <3. While we were there someone from Child Life brought her presents from the Pirate Toy Fund. We also were interviewed for NBC news to discuss the Pirate Toy Fund and how much it means to families.
Annabelle went back to school Monday and did great. She does have some limitations as far as physical activities and no swimming (or baths) for 2 weeks. She was happy to see all her friends and teachers at school and they were excited to see her back and doing well. Now we can focus on the holidays coming up including her big 5th birthday in December!
|All ready for surgery|
|Happy that Child Life brought an iPad to play on|
|Just waking up from her surgery|
|Watching iPad videos with her new monkey|
|The view from our room|
|Our room at the new Golisano Children's Hospital |
|Keeping her occupied |
|Finally asleep, the evening after surgery|
|showing off the Olaf slippers, everyone went on about how cute they were|
|Playing on the floor of our room|
|Music class on the Play Deck|
|Daddy fell asleep, Annabelle was having none of that|
|They have these all over the hospital, all different faces to look through|
|Hanging with her horses from Avery & Mackenzie (and their parents)|
|So proud of her first button buddy |
|Disconnected from the IV fluids, free to run around|
|Playing in the playroom|
|bed bath, she giggled the entire time|
|Annabelle got to be on the news and Gary the Happy Pirate|
gave her a Frozen purse from the Pirate Toy Fund.
|Rebecca Leclair interviewed us talking about the Toy|
fund & how important it is for kids in the hospital
|Headband and Ribbon from Grayson & Lucas (and mom & dad)|
|Grayson and Annabelle playing in the playroom|
|getting her vitals checked by the student|
|Riding the fire truck with daddy|
|Purse all decorated|
|Second belly button|
|Natalie and Annabelle in the playroom |
|Loved our nurses and staff, they kept us updated |
on the board and were AMAZING!!
|coloring with the present from Natalie, JuJu, & Jess|
|This is pureed sausage, they form everything |
back to the original shape. Made me laugh!
|Annabelle being Annabelle - silly girl|
|Again, so silly!|
|Playing doctor in the playroom, CT scan and all!|
|Annabelle the pirate, she was on the move so it's blurry|
|Lunch in the cafeteria |
|Back home with all her stuff, Clyde was so happy to see us!|
|First meal at home, we are getting the hang of it.|
|Evening meal and a game of Hi Ho Cherry Oh!|
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