It’s been a whirlwind. Literally a tornado of a few days.
Gabi is confused but doing well. This is still exciting and a novelty so I am just appreciating and learning from her positive attitude. She is working harder than I thought she would with her feed times and I am just so proud of her.
So Our Children’s House at Baylor homes children with a variety of issues and I have already met some inspiring families. But it truly is a hospital, with nurses that are making me crazy insisting on checking vitals every few hours and checking her tube site a few times a day. The room is a hospital room filled with oxygen tubes and emergency call buttons and bathrooms with awful railings and tile. But we are making the best of it!
Thanks to my friend, Rachel and Target, we managed to make our room pretty comfy.
It’s a Frozen theme… and I have to admit I am finally getting a little sick of those 2 sisters.
There is a cute playroom where Child Life has daily activities and 3 bikes that Gabi loves. We have peddled those bikes up and down these hallways so many times already. I’m trying really hard to get over myself but the boredom is destroying more brain cells and I can’t afford to loose any more!
Now that we kinda know what’s going on, Gabi gets a schedule everyday. It’s busy but there is A LOT of downtime. Tomorrow they should start her classroom time, so she’ll be getting some schooltime with the teacher here. woot woot!
So she has 4 feedings throughout the day and she is such an unbelievable trooper. She is working so hard! She knows that if she tries her best and starts to swallow all her food, we will take that tube out eventually, so she is motivated!
She did notice and announce today that all the kids have tubes here! Not all of them have G-tubes, but there are lots of tubes- NG tubes, oxygen tubing, trach tubes… so cute and so heartbreaking.
My thought of the day is this- I am such in denial being here. Through the days preparing for this, I have gone through anger, feeling the unfairness, sad, anxious, but still hopeful. All I can control right now is my attitude. My reactions to Gabi, my responses to the other families here, the staff, and my responses to all the support we are receiving from friends and family. It’s amazing the power we have. The power that I have to affect so many people. The power I have to make or break my daughter’s success. The power to lift another parent up here, the power to simply appreciate someone’s help.
There is a nursing tech here that went out of her way to help us when we first arrived here. The room we were assigned to initially was AWFUL! It was tiny, dark, and had grubby curtains for a bathroom door. I looked at Ethan and almost collapsed in his arms in pure despair. And when this tech, Barbara first came into the room, she wheeled in the vitals cart with the blood pressure machine and thermometer. Gabi instantly grabbed me in fear and broke down in terror. Barbara had to do her job but she understood and told us she would explain to the doctor what was going on. And I know doctors, I know the doc would be insisting for those numbers. Ethan then mentioned to her that the rooms that we saw when given the tour of the hospital did not look like this. He gently asked her if there were other rooms available. She could have easily dismissed us. She could have said that is not her job. But she didn’t. She found us another room down the hall and told the nurse that we’d be better off in the bigger room. Pure grace.
Later that first day, I saw her again. I was so exhausted, so down and consumed with what felt like starting my prison sentence. But I wanted to tell her how much I appreciated her going out of her way for us. I simply said with a touch of her arm, “thank you for your kindness today ” And she said “oh girlfriend, come here and gimme a hug.” Since then she stops in my room to make sure we are ok. Turns out she had worked 4 12 hour shifts in a row and she was probably as exhausted as I was.
I have to remember that I have the ability to give Gabi and others the same grace. The grace that God expects us to bestow onto others. The little things that can change a person’s day and affect their whole life. I have trouble, although I have gotten a lot better, about asking for help. Humbling myself to let go of the control. When others are helping us SO much with dinners and babysitting and reaching out in friendship, my response should be and will be to pay that grace forward…even if it’s as simple as giving Gabi an extra dose patience and a little bit more of my undivided attention or being available to another parent here for encouragement even when I feel like I have nothing left to give.
But I will not lie, this totally sucks.
This is how hard Gabi is working. I love her strength. I took these pictures during 2 of her feeding sessions through the observation area. It’s a 2 way mirror so she cannot see me.
Ethan and his mom are holding down team 2 at home. Kids are doing great despite their meltdowns before I left. That makes me so happy
Thank you for all your support. The phone calls, emails, texts, dinners, care packages, flights to come babysit… it’s all amazing and nothing is overlooked!