Last month we had the privilege of reconnecting with Mickie’s Warrior Mama, Caylin Blake. After months of treatment, this is her and baby Hunter’s story.
My name is Caylin. I am a counselor, a friend, a daughter, a dog lover, and much more. But above all else, I am the mother of a perfect little epilepsy warrior. On March 2, 2018 Hunter was born into this world a screaming, chubby, healthy, little love bug. Due to medical issues, I had a cesarean section and we spent three nights in the hospital. It was nothing but perfect.
During feedings, we did notice that Hunter could not latch (not for lack of desperate trying on both our parts), and that he frequently choked while eating. He seemed to lose his breath, wheeze, and change color often. We were told this was “baby stuff.” On his fourth day of life, we took him home.
We spent two nights doing the normal “exhausted up all night” thing. At six days old we were getting him ready for his first pediatrician appointment. I gently set him in his dad’s arms so that I could put on my shoes, and his dad (Darrel) said “SEIZURE!!” I quickly turned around to grab the baby because Darrel has epilepsy – debilitating epilepsy that is a daily struggle for him. I assumed he somehow felt one coming.
Instead, what I saw was our six-day-old baby convulsing in his lap. Without knowing how to handle a seizure in babies, I did what I always do with Darrel. I timed it, turned him on his side, videotaped it, and comforted him. In hindsight, I should have called 911, but I was absolutely in denial and shock. So much of me was hoping this was our imagination.
We quickly went to the pediatrician who watched the video and said that she wanted to get him in to see a neurologist “early,” hopefully within a week. I knew in my gut something needed to be done sooner. Within an hour of being home, Hunter had three more seizures, and each one became more and more intense. I got in the car, left a voicemail for the pediatrician, and decided to take him to the ER. The pediatrician called me back and said, since he is still seizing, we needed to take him to a hospital about an hour away. She’d reserved a bed for him there and he was admitted to their NICU.
They hooked him up to an EEG, and ran every test under the sun. At first, the medication they gave him was not controlling the seizures, and he continued to have one every half hour for the first 12 hours, and one every hour the next day. His oxygen was plummeting and he was not able to eat. He would wake up, cry for food until he fell asleep, and do it all over again. I felt helpless. I sat there (not allowed to hold him), with my hand on his belly praying and crying. I pumped every 2 hours because it’s all that made me feel like a mama at that point. We had no conclusions other than confirmation that the EEG showed seizure activity.
They finally found a dose strong enough to cease the seizing. After 72 hours of no seizure activity, he was finally able to be held and eat. We stayed there about 2 weeks, and on the day he was going home his new nurse said to me, “I hope this isn’t overstepping, but his choking, blue spells, wheezing and low oxygen is just not normal. If you’re okay with it I’d like to ask the doctor for more tests.” As desperately as I wanted to be done with this and finally take my baby home, I agreed.
They ran more tests and discovered defects in his airway and an inability to swallow properly which was causing breast milk to go into his lungs. We were now equipped with a dozen diagnoses, but it felt like an open road with no real guidance. We got a list of possible referrals to call, and all but one denied him because of his aspiration – they said he was too much of a risk. We also had a pediatric neurologist to follow up with. We saw him and really liked him. But we did feel that he felt “afraid” of the seizures. His plan was to continue to increase Hunter’s dose of medication regardless of seizure activity with every pound he gained. The logic made sense to me, but I was just praying he was making the right decisions. He really had good intentions and we are so thankful for him, but we are more thankful for what was to come.
After we were home for a few rocky days, Hunter had another seizure. His neurologist instructed us to administer an extra dose of medication and watch him. I felt empty and hopeless. I then remembered that a woman (Kristie Griess) had called me while we were at the NICU because of a wonderful mutual friend we have. I decided to call her because I wanted to connect with a mama who understood my struggle. I didn’t expect to meet our guardian angel.
She immediately went into beast mode and referred us to Dr. Zupanc at CHOC Children’s. Dr. Zupanc is a pediatric epileptologist. With Kristie’s clear guidance, we got Dr. Z Hunter’s records and she agreed to see him the following Monday. He was admitted to CHOC Hospital for one week.
It was the first time I felt hopeful.
Everything was different this time. I got to hold him and feed him. A feeding team came and evaluated him. They did a sleep study. Dr. Z and her team were so thorough and attentive – I finally felt like things could stabilize at some point. Fast forward, my 5 1/2 month old baby is now nearly 4 months seizure free!!!! And his medication is at a stable dose. He sees about ten different doctors for all of his diagnoses but they are all with CHOC.
We also recently found out from a follow-up study that he no longer aspirates his food. We are lessening the thickener and he is doing well. Though it does feel like the newborn phase all over again since we are teaching him to feed on thin liquids, it feels incredible to know he is no longer at risk for all that aspirating entails. We have a long road ahead of us, with both Daddy and baby when it comes to epilepsy. But that road no longer feels open and rocky. It feels like we’ve got guides around every corner, and rest stops along the way. Not to mention Kristie’s unending support which we can never repay her for.
Hunter has met and LOVES Mickie, and it is clear that they have a bond. We pray every day that God continues to heal Hunter’s tiny body. They said he would fail to thrive. He is a whopping 17 pounds, saying “mama” already, and has a will so strong not even a hurricane could stop this kid. I ended up leaving my job on a leap of faith because I want to be the one by his side at every appointment, and honestly, I’m afraid to separate from him until he’s fully stable. But that in itself (though very scary) is a blessing because I get to be the one holding him all day. We also pray for Mickie, and for Mickie’s Miracles to thrive and continue to save lives.
If it weren’t for Kristie and Mickie’s Miracles, we would be in a completely different boat. One that, unfortunately, felt more like the Titanic rather than the cruise ship we’re in now. If your child is an epilepsy warrior like mine, please connect with Mickie’s Miracles. It will benefit you more than I can explain. I hope and have faith that next time I update you, I will say “Hunter is one-year seizure free!”
A mama and fiancé to two epilepsy warriors
If anything in Caylin’s words spoke to you, let us know down in the comments! We LOVE to hear from our readers. Do you have a story to tell? Contact us!
Mickie’s Miracles is a non-profit foundation for the education and awareness of pediatric epilepsy. We run on the donations and support of others, so if you have some time, please consider donating to your cause. Thank you.