So, yesterday was interesting, to say the least. Our church had a pool party in town to celebrate a great week of Vacation Bible School. I was in the baby pool with Lydia and Isaac when I noticed several raised bumps on Lydia's torso. She wasn't crying, and at first I thought maybe a mosquito bit her several times. Then I noticed an obvious sting mark on her wrist, and knew she was reacting to either a bee or wasp. I gave her Benadryl, but it didn't seem to make a difference.Within minutes the hives became bigger on her chest and side, and her lips started to swell. That's when I completely broke down and lost it. I couldn't hold the tears in as the fear overtook me, and I began sobbing. God is so gracious in His care, and I don't think it was an accident that I was surrounded by loving friends who took over for me. One called 911, while others took care of my other three children. Paramedics were there almost immediately, and my heart soon calmed down. Lydia was visibly shaken and scared, and her usually mild tremors were obviously worse. I tried my best to put on a happy face for her, and stopped my own tears. While in the ambulance, peace came over me. I felt the prayers of friends, and I was able to smile and talk to Lydia while helping her stay calm.
To make a long story short, it took two (maybe three, I can't remember clearly) doses of epinephrine, two to three doses of Benadryl, and steroids to bring her back to normal. At no time was her breathing ever compromised. HUGE praise. We went home that night.
I've struggled today to remind myself who's in control. I wish I could keep her indoors 24/7 where I can keep her safe. That's not faith though. That's just wild and uncontrolled fear. I am learning to let go and leave it in His hands. Again.
Part of me is sad. Lots of tears. Another part is angry at one more way our daughter could possibly die.
As if food, air, and brain function weren't enough methods.
In the weeks leading up to Lydia's recent food allergy testing, I prayed so hard for all of her allergies to be taken away. Part of my prayer was that if it wasn't in His plan to completely heal her, that He would at least remove the shellfish allergy. Random, but that was my prayer. Guess what allergy she no longer has? Her dairy and peanut allergies were even worse, and she has a new allergy to melons, but tears welled up in my eyes when I heard about the shellfish, because I knew He had heard me. It was as if I literally felt Him hold me in that moment, and remind me of His care for both me and Lydia.
We'll get through this. In the palm of His hand.
Showing posts with label Fear. Show all posts
Showing posts with label Fear. Show all posts
Sunday, July 1, 2012
Wednesday, May 16, 2012
Strength in Weakness
I can't help but find it strangely coincidental that Lydia has such a combination of health problems. That seems like a pretty hard hand to be dealt at such a young age. There are certain types of seizures related to food allergies, but she doesn't have those kinds of seizures, and so - backed by medical research- we've been told that her allergies and asthma are unrelated to her type of epilepsy. I can't help but wonder, though, if there's more to know and do for her. I decided to reach out online to find other families who may be in the same unique situation that we are in. We have an amazing family and friend support network who are behind us all the way, but there's something to be said for talking to someone who is completely living through what you are. So, even though I've avoided it for several months now, I joined an epilepsy advocate group online. The very first posting I read was from a friend of a high school senior who had just died the day before from one of her seizures. Died. Three weeks before graduating high school. I looked up her facebook profile that was tagged in the post. She was beautiful. Had lots of friends. Involved in her community. Planning her graduation. Now dead.
There are epilepsy patients far worse off than our daughter, which has helped me put things into a healthy perspective. But after learning about this girl, who obviously lived a normal day to day life, now suddenly snatched away by her disease, I was petrified that Bill and I would one day experience what her parents were at that very moment. I couldn't sleep that night. When I did sleep, I had nightmares of her dying. The sadness spilled over into the next couple days. I had faith in God and His care, but this is reality- that His plan may not be to heal her. God's children experience that kind of tragedy every day- we aren't always spared from the pain of this world just because we are His.
The day before seeing the post on the epilepsy page, I'd already struggled with my anger over Lydia's health. It was the last day of preschool, and I had planned to "celebrate" at the spa during my last two free hours of the school year. Then I realized that there was going to be a pizza party for the kids immediately after pick up. So for those two hours, instead of getting a pedicure, I made spaghetti and homemade bread, and baked a cake so that Lydia could eat some of her favorite foods at the party. My anger kept building all morning long. I wasn't mad at anyone in particular, and I certainly didn't resent having to cook for her- I was furious that my baby couldn't even eat a freaking piece of pizza like the other kids. That once again, she had to be different. How do you explain that to a two year old?
By the time I arrived to the school, I was a few minutes late. I gave Isaac his pizza and chips, and put out Lydia's food. She pointed to the other kids eating, and looked at me. I redirected her attention to her yummy food and braced myself for her tears. But instead of crying, she just put her head down and sighed, defeated. It was like she gave up. I choked back the tears and felt the anger welling up inside. I was furious. I prayed silently to God, "Why?? Why?? Why does she have to deal with all of this?? I know You have a plan. But right now I don't understand, and honestly, right now this plan sucks." It pains me to even type that out because of my shame in it, but I was flat out honest with Him about my anger and confusion- maybe for the very first time. I was admitting it to myself and to Him. But instead of repenting of my attitude, I held on to the anger for a few days longer, allowing it to turn to bitterness. Anger itself is not a sin, but what we do with it can be.
By the end of the week, I was sick of living with myself. I was depressed. I wasn't praying or reading my Bible as I should, and it was spilling out into everywhere else in my life. In a way it was good to get out my feelings, but I wasn't doing it in a healthy way. I had enough, and prayed for Him to change my heart. I asked Him to help me fully trust again, and of course He did. It was perfect timing because Lydia became sick the very next morning with a virus. She was spiking fevers, which is dangerous with her epilepsy. She's more prone to seizure activity in those times. By midweek her fever was thankfully gone, but the virus had triggered her asthma. She became steadily worse until she was hospitalized on Thursday of last week. She did well soon after admission, and was able to go home Friday evening.
During this time, I started a new Bible study online with some friends called Faithful, Abundant, True (or FAT as we like to call it) based on a Deeper Still conference in Orlando a couple years ago. The first two weeks were written by Kay Arthur, and she taught on faithfulness. What I learned in the past couple days has really resonated with me. She taught that true rest is found in faith. (Hebrews 3:17-4:3) Kay said, "If I were going to give you a visual of the rest of faith, it would be your head resting on the Bible." On the flip side, unbelief is a lack of faith, and that in itself is sin. Romans 14:23 "...whatever is not from faith is sin." We have to stay in the Word of God to stay strong in our faith. Romans 10:17 "Faith comes by hearing, and hearing by the Word of God."
Kay covered Hebrews 11, and the verse that really stuck out to me was the verse about Sarah. I've read this chapter countless times, and Kay didn't even bring out this verse in particular, so I'm sure it was the Holy Spirit stirring me. It says, "By faith, Sarah herself also received strength..." It made me want to cry- because when I think of Sarah, I immediately think of her laughing in unbelief. My own son is named Isaac, which is the name her son was given, meaning laughter. She made a big mistake in not believing what God said He would do, yet she made it into the book of Hebrews because of her faith! What does that say about the redeeming grace of God? I screwed up big time, just like Sarah did when she laughed, and I was angry because I didn't like God's plan. He hasn't decided to instantly heal my daughter and restore complete health to her little body, and that can be hard to accept. But He still loves me, and His Son- my Jesus- is not ashamed of me. He can and will do great things for our family. My sins are remembered no more. I am weak, but His strength is made perfect in my weakness. 2 Corinthians 12:9. He gives power to the weak; I will mount up with wings like eagles, and I will run and not be weary. Isaiah 40:29-31. I don't have to fear, because He is with me! He will strengthen me, help me, uphold me with His righteous hand. Isaiah 41:10.
I love Psalm 73:26, because it feels like it was written just for me- "My flesh and my heart fail; but God is the strength of my heart, and my portion forever." I may not understand His plan, but that verse-that I do understand. And amen to that.
There are epilepsy patients far worse off than our daughter, which has helped me put things into a healthy perspective. But after learning about this girl, who obviously lived a normal day to day life, now suddenly snatched away by her disease, I was petrified that Bill and I would one day experience what her parents were at that very moment. I couldn't sleep that night. When I did sleep, I had nightmares of her dying. The sadness spilled over into the next couple days. I had faith in God and His care, but this is reality- that His plan may not be to heal her. God's children experience that kind of tragedy every day- we aren't always spared from the pain of this world just because we are His.
The day before seeing the post on the epilepsy page, I'd already struggled with my anger over Lydia's health. It was the last day of preschool, and I had planned to "celebrate" at the spa during my last two free hours of the school year. Then I realized that there was going to be a pizza party for the kids immediately after pick up. So for those two hours, instead of getting a pedicure, I made spaghetti and homemade bread, and baked a cake so that Lydia could eat some of her favorite foods at the party. My anger kept building all morning long. I wasn't mad at anyone in particular, and I certainly didn't resent having to cook for her- I was furious that my baby couldn't even eat a freaking piece of pizza like the other kids. That once again, she had to be different. How do you explain that to a two year old?
By the time I arrived to the school, I was a few minutes late. I gave Isaac his pizza and chips, and put out Lydia's food. She pointed to the other kids eating, and looked at me. I redirected her attention to her yummy food and braced myself for her tears. But instead of crying, she just put her head down and sighed, defeated. It was like she gave up. I choked back the tears and felt the anger welling up inside. I was furious. I prayed silently to God, "Why?? Why?? Why does she have to deal with all of this?? I know You have a plan. But right now I don't understand, and honestly, right now this plan sucks." It pains me to even type that out because of my shame in it, but I was flat out honest with Him about my anger and confusion- maybe for the very first time. I was admitting it to myself and to Him. But instead of repenting of my attitude, I held on to the anger for a few days longer, allowing it to turn to bitterness. Anger itself is not a sin, but what we do with it can be.
By the end of the week, I was sick of living with myself. I was depressed. I wasn't praying or reading my Bible as I should, and it was spilling out into everywhere else in my life. In a way it was good to get out my feelings, but I wasn't doing it in a healthy way. I had enough, and prayed for Him to change my heart. I asked Him to help me fully trust again, and of course He did. It was perfect timing because Lydia became sick the very next morning with a virus. She was spiking fevers, which is dangerous with her epilepsy. She's more prone to seizure activity in those times. By midweek her fever was thankfully gone, but the virus had triggered her asthma. She became steadily worse until she was hospitalized on Thursday of last week. She did well soon after admission, and was able to go home Friday evening.
During this time, I started a new Bible study online with some friends called Faithful, Abundant, True (or FAT as we like to call it) based on a Deeper Still conference in Orlando a couple years ago. The first two weeks were written by Kay Arthur, and she taught on faithfulness. What I learned in the past couple days has really resonated with me. She taught that true rest is found in faith. (Hebrews 3:17-4:3) Kay said, "If I were going to give you a visual of the rest of faith, it would be your head resting on the Bible." On the flip side, unbelief is a lack of faith, and that in itself is sin. Romans 14:23 "...whatever is not from faith is sin." We have to stay in the Word of God to stay strong in our faith. Romans 10:17 "Faith comes by hearing, and hearing by the Word of God."
Kay covered Hebrews 11, and the verse that really stuck out to me was the verse about Sarah. I've read this chapter countless times, and Kay didn't even bring out this verse in particular, so I'm sure it was the Holy Spirit stirring me. It says, "By faith, Sarah herself also received strength..." It made me want to cry- because when I think of Sarah, I immediately think of her laughing in unbelief. My own son is named Isaac, which is the name her son was given, meaning laughter. She made a big mistake in not believing what God said He would do, yet she made it into the book of Hebrews because of her faith! What does that say about the redeeming grace of God? I screwed up big time, just like Sarah did when she laughed, and I was angry because I didn't like God's plan. He hasn't decided to instantly heal my daughter and restore complete health to her little body, and that can be hard to accept. But He still loves me, and His Son- my Jesus- is not ashamed of me. He can and will do great things for our family. My sins are remembered no more. I am weak, but His strength is made perfect in my weakness. 2 Corinthians 12:9. He gives power to the weak; I will mount up with wings like eagles, and I will run and not be weary. Isaiah 40:29-31. I don't have to fear, because He is with me! He will strengthen me, help me, uphold me with His righteous hand. Isaiah 41:10.
I love Psalm 73:26, because it feels like it was written just for me- "My flesh and my heart fail; but God is the strength of my heart, and my portion forever." I may not understand His plan, but that verse-that I do understand. And amen to that.
Wednesday, January 11, 2012
He Has a Plan
"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.
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.
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