Can you imagine preparing your child for brain surgery? This is what Warrior Mama Dami went through preparing Warrior Baby Marlie for her hemispherectomy that happened on May 5th. In Dami’s words, she and Marlie were ready to “Kick epilepsy to the curb.” They spent the days before Marlie’s surgery cuddling and spending quality time. Then on the eve of the surgery, May 4th, Marlie underwent an early morning MRI. The next day was it was GO TIME!
The next day Marlie was out of surgery and in Warrior Mama Dami’s words “Stronger than ever” as “Marlie was a freaking rockstar in the OR”. Hoping to extubate that evening Dami realized the next couple days would be crucial and scary, but as a Warrior Family, they knew they had it in the bag! Remaining in PICU until doctors were able to remove external ventricular drain, Dami asked for, “prayers for a smooth recovery” as Warrior Baby Marlie healed from her hemispherectomy surgery.
Post op day 2 Dami and the doctors were able to take a closer look at Warrior Baby Marlie’s incision. As you can see in the photos she was pretty swollen, but that is to be expected with a big brain surgery like this one. Dami reported that “the team didn’t have much to say because she was doing so well.”
The plan was to let Marlie rest and heal allowing the EVD (drain) to come out in a couple days. After that, when Marlie wakes up on her own and is ready, she will begin therapy. Dami was ecstatic with Marlie’s ability to endure this major surgery saying, “This miracle of mine just continues to amaze me more by the day! I feel so honored to say I’m her Mama.”
The second day out of surgery, Marlie celebrated her second birthday! Dami shared these inspirational and moving words on that day, saying “As I stand next to your bed while your clinging to my finger so tight, I want you to know I’ll always protect you. I will always fight for you!
And even though we are spending this day in the PICU, you received the best gift God could give…. A CHANCE TO BE SEIZURE FREE!
I can’t wait to see what the rest of this year has in store for you. I have a feeling your going to do some freaking amazing things!”. Although there was a long journey ahead for Warrior Baby Marlie and Warrior Mama Dami, they were still able to celebrate Marlie’s miraculous successful surgery and her birthday in the PICU.
Marlie was seizure free post surgery and was allowed to go home with Warrior Mama Dami after 5 days. According to Dami it was “Best Mother’s gift I could ask for ♥️”. The two were at home and Marlie even began eating puffs!
There were some issues that emerged after Warrior Baby Marlie went home. In Warrior Mama Dami’s words “One of the biggest risks with Marlie’s hemispherectomy surgery was her shunt malfunctioning, and now we are at that point. Gosh, these shunts really put Marlie through so much!! Today around 2pm Marlie will go for her 6th shunt revision. Praying this will be the last one for a while!”
The two prepared to go into surgery and remove this shunt malfunction.
Not even 24 hours after her shunt revision surgery, Marlie was back to her smiling Warrior Baby self. She went home and had lots of fun in the pool with Warrior Mama Dami. Laughing and playing in her float, there were several days of happiness.
But there were issues emerging again.
Warrior Baby Marlie had to go to shunt revision surgery for a second time. Dami wrote about the unexpected experience, “This is where I am on a Sunday night at 9:30pm ? surgery waiting room all by myself. No other families. Just me. Waiting for my daughter as she’s in the OR for the 22nd time.
This is a pain that I pray no other mother has to feel, but unfortunately there’s a whole community of us.
Medical moms, I see you, I love you, I AM YOU.
I wish I could say it gets better, but honestly it only gets worse. It stabs you in the heart every time you hand your child to the surgeon and trust them with your child’s life. It tears you apart when you feel useless and all you can do is hold them in your arms.
Love on your babies every second you can…”
She continued her contemplative thoughts about being home and doing well with Warrior Baby Marlie’s epilepsy by saying ” Before we decided on Marlie’s hemispherotomy surgery we knew one of the biggest risk was shunt malfunction and infection. Especially with Marlie’s extensive history.
A couple weeks ago she had the shunt malfunction, but everything went smoothly.
Now we are back… with an infection. A scary infection. Meningitis ?
Even though I was prepared for this moment, it still feels like a stab in the heart. From an Epilepsy stand point we doing amazing, but these complications could just crush our dreams. And honestly I’m angry! Those two weeks home was a glimpse of what Marlie’s life could look like. And it was wonderful!!!
So now the surgeon took Marlie’s shunt out and placed an EVD to get all the infected cerebral spinal fluid out. She’s being treated with antibiotics. We are so blessed that we caught the infection before it got to her blood.
After 14 days on antibiotics the surgeon will go back and place a new shunt.”
Knowing that God would make a way both Warrior Baby Marlie and Warrior Mama Dami continued to fight.
Marlie and Dami as courageous warrior continued to fight tenaciously. Fighting the shunt infection and staying resilient in the hospital. A little over 3 weeks later, they were cleared to go home!
Dami said about the situation, “After 23 days, WE ARE HOME ? and in our NEW home!
All I can say is we feel so blessed!” This miracle like so many more, came from Marlie and Dami’s strength, as well as the support of the pediatric epilepsy community. Love, support, and resiliency are key ingredients in making miracles happen!