"Mommy, Lydia is so silly!" I was at the kitchen sink and didn't even turn toward the table when I asked Brooke what she was talking about. She said, "Look at her! She's just staring at Isaac!" I immediately turned my attention away from the dishes, but by the time I got to the table, the seizure was over.
I've been resisting writing a post about this, because I don't want my daughter to be labeled. It's also just hard to talk about. To not write about it though, is to ignore God's hand, and I feel it's wrong to not tell about all He's done. Countless people have prayed for her, and I think it's good to testify about how those prayers affected her life. I also feel somewhat alone in this, and am encouraged to talk to parents who have been through this with their own children.
Two months ago, I dropped my two youngest children off at preschool as normal. (It's only for two hours two days a week, and gives me a nice mommy break in the week.) Afterward, I came home to do some housework. I was unloading the dishwasher and catching up on the DVR when my cellphone rang. "You need to come now. Lydia stopped breathing." I know she said more, but I can't remember any of it. I just immediately started sobbing, and firing off questions- what happened, was she going to be ok, what do I do now? Five medics were already there, and she seemed stable, but I needed to come right now. I made myself calm down for a minute before jumping in the car. I was shaking uncontrollably, not to mention the hysterical sobbing. Was she going to die?? I truly did not know the answer to that question. I prayed for her life, while calling my mom and Amy to have them start praying. Bill was out of cellphone range at work, and was unreachable.
When I pulled up to the school, my heart started pounding even faster. There were two ambulances at the front entrance- both of them there for my baby. She was already in the ambulance doing well, so they had just waited for me to arrive before driving to the hospital. When I saw her, she was awake and cuddled up in a paramedic's arms. She looked at me, but it was as if I were a stranger. She had no reaction whatsoever. It struck me as odd, but I was so relieved to see her alive and well that it didn't really register with me. The medics seemed calm, which in turn made me calm. They said that by the time they arrived she was starting to come back to consciousness, but she was still very lethargic. It seemed to be classic for someone who has just had a seizure. I was a bit stunned when the medics mentioned this. She had never had a seizure before that I knew of, and she had no fever that morning. Not much else seemed to fit though. There was no sign of anaphylaxis with her severe food allergies. She has severe asthma, but that didn't fit either. Blood sugar and blood pressure were both normal.
Before the ambulance drove off, my friends who also happen to be Lydia's teachers already had arrangements made for my son, and I was reassured that he had no idea what had happened with his baby sister. He's in a different classroom from her, and did not witness anything. I can say with confidence that the entire staff in the preschool program did everything exactly right in taking care of my children and the other children at the school.
One of the numerous miracles of that day was the fact that the entire episode was recorded on the nanny cam. It showed Lydia sitting in a teacher's lap, rubbing her eyes. The teacher had to put her down for a moment. If she had been in the teacher's lap the entire, it could have just been assumed Lydia fell asleep. I'd say the timing of putting Lydia down was a miracle. A few moments later, Lydia was standing in place, then started to sway a bit before falling like a plank to the floor. Her right hand shook a bit for a few seconds. One of her teachers saw the fall and immediately ran to her. This was another miracle- her teacher was not in her normal "routine" with the children, and was faced in just the right direction to see her fall, and be able to realize it was far from normal. As soon as she picked her up, she noticed it was like holding a rag doll- Lydia didn't support her head or neck on her own. She then seemed to come around after a few seconds, but her teacher noticed her lips were blue. She immediately tried to assess if she was breathing, and at this point the other teacher was dialing 911. Lydia's eyes were rolling around, and she wouldn't focus on anyone. She then vomited a couple times. The medics were there in just over a minute later, and by that point she was able to focus on the person talking to her. She immediately clung to a paramedic who would end up holding her until we arrived at the hospital. She would cry if anyone tried to take her from him.
On the ride to the hospital, Lydia was awake, but very much out of it. It was as if she had no awareness of her surroundings. My memory was taken back to the first ambulance ride she took at just under a year old after eating her first taste of a peanut butter cookie. She had been happy and was having a blast during that ambulance ride, even though her lips were twice normal size. I wished she could give at least a tiny smile this time around.
When we arrived and stepped inside the hospital, my calm heart rate immediately jumped right back up. The 911 call came over as an infant cardiac arrest, so there were so many ER nurses and physicians on hand I couldn't even count. The realization that I could have lost my baby flooded over me once more. Within a few minutes the room slowly dwindled to just a few nurses as they realized it was not actually a cardiac arrest case. Lydia at this point took note of the commotion and then recognized me. She reached for me, crying. A couple minutes later, she fell into a deep sleep. This is the same child who stayed awake all night long during the twelve hour drive to the beach. That alone should have alarmed me, but I was enjoying cuddling my sweet girl to think beyond the moment.
I was able to check facebook in the ER, and my profile was flooded with prayers for Lydia. I was overwhelmed by the love poured out on her behalf. People all over the state and beyond stopped what they were doing, and were on their knees praying for our little girl. The youth pastor from our church also came to be by our side until my husband was able to be there. I still had been unable to reach him on his cell, so he had no idea what was going on. I felt terrible that the first message he would listen to was me sobbing hysterically, and incoherent. At random, about five hours after it all began, the pastor felt a nudge to try calling him just one more time. The very second - literally- that Bill entered into cell service, and his phone lit up from all the missed phone calls and messages, his phone rang. It was the pastor telling him about Lydia. I'm so thankful he heard about it all from a calm voice who could tell him all was ok, instead of hearing all the hysteria from the hours before. Another miracle in a sea of many.
After a few hours in the ER, the usual labs, EKG, and CT scan revealed all normal results. Good news, bad news. It gave us no clear answer as to what happened. The final diagnosis given by the ER physician was altered consciousness, possible seizure. She was referred to a neurologist upon discharge.
Taking her home that evening was such a blessing. But I was also terrified to leave her side. What if she had a heart arrythmia in which she could suddenly drop unconscious again, this time not waking up? If it was a seizure, what if it happened again when I wasn't by her side? When it was time to put her to bed that night, I stood over her crib sobbing. How could I walk away from her? I contemplated sleeping on the floor of her room. I prayed about what I should do. I can't explain what happened, because I didn't physically see anything, but I suddenly felt an unnatural calm, and knew without a doubt that her room was filled with angels. I could feel their presence all around me. I knew that the prayers of all those who prayed for her, people I had never even met, had been heard and answered. I layed my hands on her and prayed once more, and then quietly left the room. I soundly slept all night. Bill checked on her frequently, and she was sound asleep and breathing each time he did.
A week later Lydia had her EEG. She had been completely normal since the day everything happened, but I was still very nervous about the unknown. I still feared something was wrong with her heart, and that she could suddenly have a life threatening arrythmia. There are heart conditions that fit the scenario of what happened, and can also cause seizures. I also started looking at the blank stares she gave all the time a little differently. I had assumed she was a day dreamer like her sister, but now I started to wonder if those very brief stares were actually seizures. My mind was playing games with me. I had faith that the Lord was taking care of her, but I am human, and just wanted my baby to be ok. I wanted answers.
The EEG went perfectly- she was awake when they needed her awake, and fell asleep when she needed to be asleep. The tech couldn't give any answers to me, so it would be awhile before I'd hear the results. Her appointment with the neurologist was about a month away. It typically takes two months to get an appointment with a pediatric neurologist in this area, so one month was actually pretty quick. In the next few weeks, Lydia was her normal self. Well, with the exception of a three day, two night hospital stay for respiratory distress secondary to her asthma. Another scary experience, watching her tiny body struggle for every single breath she took. Her O2 saturation was in the high 80s upon admission. After recovering from that event, she then came home and caught fifth disease, and then hand foot and mouth disease a few days later. My poor little girl just couldn't catch a break.
In the midst of this, and no more major episodes, I had convinced myself that all was ok. Whatever happened at preschool was a freak event, but nothing was chronically wrong with her. Bill asked if I wanted him to take off work to be with me at her appointment, but I told him not to do that. I truly expected to hear that the EEG was normal. I was wrong.
Her EEG was full of seizure activity. She has generalized type seizures, meaning her entire brain is affected. She has no aura, and her frequent blank stares are not daydreaming moments. The seizure at preschool likely started off this way, but then progressed to the tonic clonic seizure caught on video. She needs to be on daily seizure medication, none of which are without side effects. My daughter has epilepsy. She has a good chance of outgrowing the condition by adulthood, but she has a long road ahead. Most children with epilepsy have learning disabilities and attention deficit problems. The majority of children are diagnosed in elementary school; Lydia is barely two years old, so we don't know why she has seizures at such a young age. They are unrelated to her severe food allergies and asthma- two other conditions usually developed in children several years older than her.
I took two days to be in self pity for myself and our family, but mostly for her. This is so unfair for her. She's been through so much already in her short life. If I ever forget about this, I only have to look in my purse at the epi pen I carry everywhere, or wait until mealtime when I have to watch like a hawk what she can safely eat. It's funny- a peanut allergy used to be one of my worst nightmares for my children. Now I would love to have the "luxury" to be concerned with only that one. I don't mean to make light of children with peanuts as their only allergy- it's terrifying to know your child is allergic to something potentially airborne that can easily kill them. But if I lived in fear of that allergy alone, I would be crippled when combining that with all the other food allergies, on top of the asthma and seizures. In a way, God gave me a gift of sorts. Instead of giving my child one thing for me to focus on and fear, we were faced with something so big beyond what I could handle, I had the choice to either fall apart, or give it over to Him. I'm so glad to say I chose the latter. It's not my strength, it's His. I hate the fact Lydia is dealt this hand in life; but He has emphasized over and over to me that He has a plan for her. I pray for her healing, but I also pray to never be an obstacle to the work He is doing in and through her.
At the time it happened, I cried out to God as to why He allowed her to have that seizure. Now I think I know why- I think that He allowed it to happen in order to open our eyes to the fact she was having seizures multiple times a day right under our noses, and we had no idea it was happening. Her blank stares are so brief, that by the time you notice, it's already over. Occasionally they last longer, like the one at the breakfast table a few days ago. I still have fears for her. I'm afraid for her cognitive development, and that she will be teased because of her seizures. Perfect love casts out fear, but I'm still His work in progress, and rely on Him daily to carry my burdens. I don't live in perpetual daily fear, and for that I am so very thankful. I've given it over to Him, because I know how weak I am. I remind myself that parents hear news beyond what I could comprehend every day, and that even with all she's been through, Lydia is a very fortunate little girl. Even with all her medical problems, she still is living a relatively normal life with the help of modern medicine.
There are so many more miracles that God completed in the past several weeks. We are still praying for His mercy as we slowly titrate Lydia's seizure medication. It is the best medicine for her to be on, but it does come with some heavy duty risks, one of them deadly. But it's more of a risk to not place her on medication, so I feel we've made the best choice.
Thank you so much to all of you who prayed for our little girl. I in turn have been humbled through all the prayers given on her behalf, and am more dedicated to pray for others on a more consistent basis. Her story is far from over, and I know His plan for her must be a pretty spectacular one. I'm just glad I'm part of the journey.
