If you haven’t followed my other two blog posts about Bria, read them first, click on the links below.
The day has arrived! It was so nice to wake up and have Kerry with us today instead of us trying to communicate over Skype and different time zones. We finally woke up in the same room after being apart for 4 months. We did have to share a room with another patient and family but that didn’t matter, we were still together.
I’m pretty sure the knot in my stomach this morning was the biggest its ever been. It was kind of a bittersweet feeling knowing the day arrived because I am at the point of “let’s get it done.” We didn’t have a choice in the matter and this was our only option to save our daughter.
Bria woke up with a smile but she was starting to feel a little nervous because she doesn’t like the feeling of being nauseous when she wakes up from surgery. It wasn’t the fact that she was having brain surgery, it was the waking up part that she was dreading.
Carson and Jana arrived and we were all doing our part to keep Bria laughing. It’s not a hard job to make Bria laugh on any day but today it was important!
Here we go…
Since Kerry was away for all the meetings leading up to Bria’s surgery, her Doctor came in to see him and explain what was about to happen. He showed him Bria’s scans and told him how today was going to play out. He really is such an amazing Doctor, never in a hurry and always willing to listen. He told Bria he would see her downstairs in about 30 mins.
A little fun before we get ready.
The nurse came in and did Bria’s vitals one last time before her surgery and she got into her gown. When she put that gown on, I knew this was happening. I wasn’t dreaming but I was living my worst nightmare. I kept thinking back to all the consent forms I signed last night and all the risks involved in this surgery. Bria was still smiling of course!
Time was ticking and we were waiting for them to come and get her. They were a few minutes delayed and it worked out in our favor because we were waiting on a special visitor who was flying in to spend the day with us. This lady is a special part of our family and wanted to be there. I carried her two babies and she is always there for us. We both gained a family on our surrogacy journey!
She brought Bria this hat and it was PERFECT!
THE TIME HAS ARRIVED!
They came to get Bria to transport her to the OR. She said her see-ya-laters to the family and off we go. Kerry and I went with her to get prepped.
Patrick was her driver so we had to get a picture
We arrived downstairs and waited for her team to arrive. Everyone just loved Bria’s infectious smile and admired how brave she was.
Her Anesthesiologist was so sweet. This team had all of my trust!
The child life team at CHEO is out of this world. They came yesterday and explained Bria’s surgery, showed her pictures of the OR and what to expect afterward.
I was going in the OR with her until she was asleep
Family picture of course
and the time arrived. Hugs and Kisses for Dad and off we go
Walking to the OR made me want to puke. I was sweating buckets and still couldn’t believe where I was heading with Bria. Why couldn’t we be going for a manicure or to watch The Nutcracker like we had planned? She was booked in for 8-10 hours. Waiting for this day to be over was going to feel like forever.
We arrived and the OR looked like a scene from a movie. This wasn’t my first time being inside of an OR but this was crazy. There were computer screens and equipment everywhere. This is the moment that Bria finally felt scared. It hit her like a ton of bricks. She broke down crying and told me she was so afraid. She squeezed my hand so tight and stared into my eyes as she was laying on the OR table with tears flowing down her cheeks. I felt like taking her into my arms and running away to some tropical island where she had no worries. Why was this happening to such a good human? Why was she put in this place? I will never know these answers but I knew that I just had to be strong to help her get through this part of her life. The time had come where she was drifting off to sleep. I told her I would be waiting for her when she woke up and I loved her. I really wish I had a bag of pixie dust to make everything better but instead I had to hand her over to her amazing team and trust them to bring her back to me just as I left her. Her eyes were heavy and she fell off to sleep. They whisked me away quickly and they started their job!
I went back out to meet up with Kerry. He was sitting with one of Bria’s team members while I was inside with Bria. We were given instructions as to where to wait for updates and where to wait for her Doctor once they were done her surgery. We would get the first update at 11:30am.
We headed back upstairs to meet up with the rest of the family. What does one do with their time when they have a child in an operating room all day getting surgery on her brain?
We all went upstairs to the Ronald McDonald Family Room and we waited. We made arrangements with the OR that we would be there for updates. We all sat and chatted and watched the clock. We updated family and friends and did some laundry.
It’s 11:30 and here comes Belinda. She was our update gal. She didn’t have much to report as they were only just inside her brain getting ready to attempt her biopsy. She told us the craniotomy went well and that part of her skull was sitting in a dish…crazy right?
Next update was coming at 2:30pm. We didn’t feel like eating but we went outside for a little walk to get some air. While we were there, the surgery floor called and told us that we had to come and move all of Bria’s belongings to the ICU. We did that and got to meet her nurse that would be caring for her when she was out of surgery.
It was almost 2:30 so we headed back to wait for our next update. This one was a big one because we didn’t know if we were able to get a biopsy of the tumor and also it was a huge risk of her having a stroke while making the new hole for the fluid flow.
It’s 2:30pm and we get the best news. The biopsy was a success, the new hole was successfully made and they were placing her shunt in at the moment. What a huge relief, I would explain how it felt but I can’t put it into words. The surgery was almost complete and they were going to start closing soon. We were told to head down to the ICU waiting room at 3:30 and her Doctor will meet us there.
TEAM BRIA was over the moon happy at this point!
All week the theme was rainbows! Bria painted a rainbow, she got a rainbow dog and so on. After the update, I said jokingly “it would be amazing if we saw a rainbow after that wonderful news!”
We looked out the window and look at what we saw…
We headed down to the ICU around 3pm and waited for her team. It wasn’t long after that and her doctor came down the aisle smiling from ear to ear. His face told me that she was doing okay. He said “everything went as planned, no complications and it was a success. Bria was awake and moving all her limbs.” A sense of relief just went over me because one of the major risks of this was waking up and not being able to move one side of her body. He said we could go see her right away.
Kerry and I went in. She was awake and trying to give us a smile. She was still pretty groggy and on high doses of pain medication. She was able to answer a few questions and wiggle her toes for me and that was all I needed at this point.
Only Bria would give us a smile like this after major surgery! She tried really hard but she pulled it off!
The next 24-48 hours were critical. The nurses here are incredible and made sure Bria was taken care of and her pain was under control.
Bria’s special visitor said her good-byes as she had a plane to catch. We were so happy she was able to be with us on such an important day.
Bria slept for the most part after her surgery. She did get sick like she thought she would but Marc, her nurse took care of that rather quickly.
We got settled for the night. I was able to sleep with her in the room and Kerry slept in the parent room. They really accommodate your family needs and make things less stressful for you.
Bria had a lot of pain in her head throughout the night. It was a restless night but that is what we expected. Morning came and so did a lot of visits from doctors, nurses, pain management team, etc. She was also scheduled for an MRI at noon.
We are now on the road to recovery and wait for answers. The biopsy was going to take 10 days to get back.
Bria went for her MRI. The nurse wheeled her down in her bed so that was good. She was in no state of going there otherwise. It was a short MRI as they just wanted to make sure the cerebral spinal fluid was flowing properly.
We got back from the MRI and there was a present waiting for her. She was excited about that!
We had a visit from her Doctor and he read the MRI. Her brain fluid was flowing perfectly. We were now discharged from ICU and moving upstairs to the surgical unit.
First, she needed a picture with her amazing nurse, Marc. He was so good to Bria and our family.
We got settled upstairs and Bria was having so much pain in her head. They called her Doctor, he came to see her and changed up her medications a little. She settled a little better afterward.
Here is her incision, he did such an incredible job!
Today she was still having pain in her head and that concerned her Doctor a little. That afternoon he decided to drain off some brain fluid through her shunt. That would relieve some pressure and hopefully take care of her headache. She sat there like a champ as they inserted a needle into her head to access her shunt. The procedure was a success! In no time, Bria’s headache was history!
Opening a few presents made her feel a little better.
Over the next few days, Bria was so nauseous. She was getting Tylenol liquid every 4 hours and it made her sick every time. Finally, we got that switched to pills instead and that made a world of difference. We finally got her into some real clothes and she felt so much better.
She had a surprise visit from her friend who she hasn’t seen in over a year. It made her day!
Later that evening she wanted to try and get out for a walk. She did really well and wanted to keep going. I am pretty sure she would’ve walked home if she could get away.
Maison finally got down to see her and to see Dad. This was his first time down since we were admitted.
Bria is on the mend. She is still really tired and having pain but it’s getting better and better every day.
She got a smile no matter what!
and a big ole laugh!
She has been through so much in the last few days and if I could switch places with her, I would have. She has been such a champ and all the nurses just love her.
When her doctor came in this morning I asked him about her results and nothing was back yet. I wanted to know what he thought and I wanted an honest opinion. He looked me straight in the eyes and said “prepare for the worst, this tumor is alive and we are going to most likely need treatment of some sort.” He gave me a hug and told me he was going to get Bria what she needed to fix her. It was the news that I was expecting but not what I wanted to hear. No parent ever wants to be told their child has cancer and needs a series of treatment. I just wanted to take her home and put all of this behind us but unfortunately, this wasn’t going to be the case.
Today was shower day! She had most of her lines out and got approval for a real shower. No more sponge baths and she was able to wash her hair for the first time. This was HUGE for Bria. The things we often take for granted!
She literally felt like a new person!
Her wounds were healing nicely. She had this big one and 3 other smaller ones where they had to screw a cage-like device that helped keep the equipment in place.
After her shower, it was time for school. CHEO literally offers everything a child needs. Her teacher came to see her and they worked on some math. Bria also had to get him to sign her signature board that she painted.
Another special visitor today. These 2 go back to toddlers living in Petawawa.
Our girl is finally back to herself. She had quite the journey but is feeling ready to go home!
One more MRI and we can break free from this place. I mean it is a 5-star hospital with butler service but we were ready to leave!
11 Nights in the hospital and we are outta here!
We waited for Uncle Carson to come get us and take us home! Such a great feeling seeing how well she is doing!
Now we wait for the next steps. We were given a heads up on what may happen but we have to get the official word once the results are back. For now, we celebrate life and take one day at a time!