Evelyn’s Story

Her first Infantile Spasm symptoms
For a few weeks I had been seeing Evelyn’s eyes track to the right, it was a very quick movement, hardly noticeable.  It all began right at the end of January / beginning of February.  Each time it happened I would say to my self, “What was that?”, and as quickly as I had the thought, it had stopped and she appeared fine.  Babies have moments where they are not in control of themselves for a moment as they are learning to coordinate their bodies so I just assumed that was what was going on.

On February 19th, 2011 we were having my son and daughter’s 8th and 6th birthday party at our home.  While Evelyn was on my hip her body went limp backwards.  It was as though Evelyn was falling backwards to try to get out of my arms.  Again, babies will lean their heads towards something they want to go towards and lose their balance.  Deep down I was concerned and I wasn’t going to let this go much longer.

On February 24th we had our dear friends over (Kelly, Tristan & Ella).  As my friend Kelly was getting ready to leave Evie fell back from my hip again.  As I was explaining my concerns over her infrequent bizarre behavior she went back a second time and then a third.  On the third time I was looking directly at Evelyn’s eyes and I saw her eyes roll into the back of her head as her body went limp backwards.  It was only one or two seconds before she was herself again, it was almost instantaneous.  My friend Kelly laid Evelyn down and we made sure she was tracking with a light and then she also made sure her eyes were dilating. After we felt she was okay, my friend left and I called the pediatrician just to let them know what happened.  At this point it was later in the evening and when the after hours doctor called they asked for us to go to the emergency room to be evaluated.
Heading to the Emergency Room
At the emergency room one of the nurses saw Evie’s “eye rolls”.  This is what we began to call them, not knowing what we were dealing with.  The doctor never saw her eyes roll, however he ordered blood work and a CAT scan.  When both of these tests came out okay he discharged us and asked that we follow up with pediatric neurology in the morning.

Some relief in sight… we thought…
In the morning we spoke with Erin from pediatric neurology.  She was wonderful.  She was comforting and consoling and did not make me feel like I was crazy.  I knew something wasn’t right, no matter who saw it or didn’t see it.  I spent 24 hours a day with my little one and I just knew something wasn’t quite right.  She said to watch her closely over the weekend and she would call me on Monday.  While visiting family over the weekend we found out about a condition that ran in our family that had the same exact symptoms and this condition was an underdeveloped inner ear.  This inner ear issues caused a type of vertigo where my husband’s cousin, as a toddler, would lose tone and fall and her eyes would roll back in her head.  At this point we felt relieved.  We thought for sure this must be it and that she would grow out of it.  She continued to have a few ‘spells’ throughout the weekend.

On Monday when Erin called she asked if we had a completely normal weekend.  I said “no”, and explained the episodes she had over the weekend.  She said that the doctor wanted me to pack my backs for a few nights and head directly to the emergency room – right away.  My heart began to beat a little faster and I began battling fear.  I wondered why they were making such a big deal of this.  I was afraid that it was more serious than I had believed.  My prayers began, pleading to the Lord that this day would not be the day that changed my life.  That I would not have a ‘life changing day’.

Evelyn’s First EEG
As I arrived at the Emergency Room with my sweet perfect baby they took me directly to the EEG room they had prepared for Evelyn.  The tech attempted to put on a type of EEG that lasts only 20 minutes.  This type uses a wax to adhere to the scalp.  Well, my dear Evelyn was very frustrated, very scared, and very sweaty and hot.  There were no nurses available to my knowledge to help and I was forced to pin my baby girl down while she screamed and cried for 45 minutes while the tech attempted to painstakingly put each one of the EEG leads on her sweaty and moving head.  After 45 minutes of this torture the tech came to the conclusion that Evelyn was knocking off as many leads as she was putting on, this simply wasn’t going to work.  At this time she called the doctor on call, it was Dr. Alverez.  Dr. Alverez said to use a different type of EEG called an ambulatory EEG.  This type is glued to the scalp with a very strong glue and would stay on for about 24 hours while reading her brain activity.

After another 45 minute ordeal the leads were on, her little head was wrapped up in a mesh sock and she was completely passed out.  The tech said she didn’t know how to read babies EEG’s very well and said she wanted to call the doctor.  It was only after that I realized that the tech knew what she was looking at wasn’t good and needed to call the doctor.

Diagnosis of Epilepsy – if that wasn’t bad enough…
The doctor came in just a few moments after, she briefly introduced herself, explaining that she was actually currently with another patient but wanted to look at Evelyn’s EEG as it was happening.  Dr. A. and the tech looked at the screen intently and both nodded as they said “Yes, there’s an event”, “Yes, there’s another”, “and another”…  Fear began looming over me as I looked at my sweet baby girl sleeping on the bed and at these women, so intently looking at her brain activity and nodding.  I said, “Could some one tell me what an ‘event’ is?”  The answer to this question was the start of my life changing day.  Dr. Alverez looked at me and said, “Of course… an event is seizure… your daughter has epilepsy”.  She went on to quickly explain that epilepsy is treatable, however I was stuck on the first statement.  I felt a wave of panic come over me, I was alone, without my husband, finding out life changing news about our precious daughter.  Dr. Alverez excused herself so she could attend to the patient she was already working with.  The tears began to roll down my face.  The tech got me some tissues and I called my husband.  He was as shocked as I was.  He arranged for our other children to be cared for and came to the hospital immediately.  While I waited for him to arrive I called our pastor and we prayed.  My pastor lifted up our daughter to the Lord, as did I.  Our pastor said he would come to the hospital the next morning.

My husband came and at that same time Evelyn began to wake up.  They wheeled us back down to the Emergency room where we waited for a room.  As we were waiting Dr. A. came down and formerly introduced herself to us.  She asked us lots of questions like, “Has she ever had an accident and  hit her head?” or “Was her delivery normal?”  Until this point in Evelyn’s life, all things had been pretty uneventful and there was nothing alarming to report.  She explained to us that Evelyn has epilepsy and that she felt that we caught this extremely early and that we have been given a window of opportunity to intervene with medicine before the chaos in her brain had a chance to fully organize and cause a larger seizure than the small ones she was currently having.  She kept remaining positive with us, sharing the fact that she had epilepsy herself until age 10.

Her first medication
We tried to be encouraged and remain hopeful, we were simply just so scared.  She explained that we would need to start epilepsy medication immediately and the drug of choice would be Phenobarbital.  We were taken into a room in the ER and they put an IV into Evelyn.  My husband nearly (in his words) knocked over the nurse – he had never seen any of our children in pain like this, never mind our helpless little baby girl.  I had stepped out during this procedure as the pediatrician on call asked me to recall the events leading to this moment and tell her them.  This was now at least the 5th personal to ask me to retell all that  had happened over the past month.  I could hear my sweet girl screaming through the entire Emergency Department, so I requested we walk away further, it was breaking my heart.  Upon returning to the room I picked up my very distraught Evelyn and she lay on my body, overwhelmed and exhausted, her head attached with wires to a machine, her arms attached to monitoring wires and an IV and her body laden with stickers and wires to monitor as well.  The nurse brought us a warm blanket and Evelyn was able to fall asleep on my chest.  As she slept they administered her first dose of Phenobarbital.

Losing her smile
As she received each dose of the Phenobarbital each day I ‘lost’ a little more and more of her personality.  She eventually couldn’t hold up her head or sit up anymore and rarely smiled.      After this first dose of Phenobarbital was administered and she was closely monitored for 30 minutes, we were taken up to the pediatric floor and admitted.  Family and friends sent phone calls, emails, texts, facebook notes, all in support and prayer for our family and for Evelyn.

Diagnosis of Infantile Spasms
The following day (Tuesday) my husband came around 7:00pm to visit, he brought our older children.  Our son who was 8 and our daughter who was 6.  The children were barely in our room when Dr. A. saw that my husband had arrived.  She said she wanted to talk for a few moments, I was not concerned at all.  However, as I left the room in my socks, expecting to just poke our heads out into the hallway for a few moments, she asked me to put on my shoes and explained we were going to take a walk and that she had some test results to go over.  As I think about those moments, that night, as everything changed, it is so hard to recall the feelings we felt.  It has now been nearly two months since that night and stirring those emotions is difficult.  I looked at my husband as I we followed behind Dr. A.  She was walking swiftly with her head down and we were about 15 feet or so behind her.  I looked at my husband Todd and said “What’s happening Todd, what test results, what’s going on?”  I wanted him to make everything okay when I knew it wasn’t.  I could tell we were about to have a life changing moment.  She brought us down a few corridors and into a vacant hospital room where there were three chairs setup.  She sat in one and the other two were facing her.  Todd and I joined her and sat down, she looked at us with great concern and great empathy and said “I am sorry Mr. and Mrs. ___, I do not have good news for you.  I have reviewed Evelyn’s EEG, as have my colleague here at the hospital, as well as the Epileptologist at Dartmouth.  Your daughter has a serious condition called infantile spasms.”  She said a lot more, much of which was a blur immediately after leaving the room.  However the hardest part to hear was when she said “The next six  months will be a fight for her quality of life.”  She talked about the prognosis and that it was generally poor with a definite possibility of severe mental retardation, it was clear that the odds were not anything anyone would want to face.   Todd  was immediately defensive.  He told her that He didn’t believe her and that he needed to see something.  She said she was very sorry, and that Evelyn’s EEG brain pattern, called hypssarrhythmia, was a classic textbook case.  She said we caught it extremely early and that this would be in Evelyn’s favor.  She left the room and returned with a text book and showed Todd what this hypssarrhythmia brain pattern looked like vs. a normal brain pattern.  Having just left Evelyn’s EEG it was clear to myself which one she fell under.  My heart was pounding, panic was looming over me.  I pictured slowly losing my daughter, moment by moment, day by day, until she was seizing constantly and I had lost her completely.  As the tears grew larger and larger I asked her, “Is she going to die?”  She said no and comforted me.  I felt like my entire world was slipping through my fingers.  As a mother I wanted to care for Evelyn and make her well, make her safe, and I couldn’t do a thing.  I felt so desperately helpless.  I felt like in an instant someone stole my daughter, that her entire future was unknown and utterly terrifying.  In an instant I thought of my other children and wondered how this would effect them.  I told myself I had to hold it together, they need me, they need their mother.  I was terrified that I would fall into a deep depression and that the mother my other children were going to have would now be lost in surviving this horrible tragedy.  I thought of my marriage and wondered how we would survive this.  I envisioned caring for a child for the rest of our  lives that needed full time care, unable to care for herself in any way.  I have never felt so terrified in my life.  My husband and I squeezed each others hands and I cried in his chest.  She allowed us the time we needed to cry and to compose ourselves and then she handed us some packets of paper.  These packets had information about Infantile Spasms.  The information was not sugar coated, it was clear how grim our situation was.  Dr. A. said that the best thing we could do was to read all of the information so that moving forward we were making educated decisions for our daughter.  There are limited resources to learning about this disease, because it is so rare.  It affects 1 in 2500 babies – that’s less than a tenth of a percent of children (.04% to be exact).  She explained a medication that she would need to be started on called ACTH.  This medication costs 34,000.00 per vile and she said she would begin immediately fighting with the insurance company to get them to cover the medication.  She said she has never lost a fight yet.  However, with this disease, time is of the essence, so as we waited for the ACTH to be approved and shipped to our home, she would begin Evelyn on a second anti-epileptic drug called Keppra.  We learned that this drug may or may not work.  It works great for some and not at all for others.

The moments following her diagnosis
We returned back to our room.  Our older children were coloring, with the chaplain.  Yes, that is correct, the situation presented was so grim, they sent the chaplain.  At this point I  thought for sure she was just handed a death sentence and I felt the wind escape me.    I could barely keep myself together as I looked at my mother-in-law and my step-mother who were in the room.  I didn’t want my older children to see me in this panic state.    I looked at my step-mother and said “It’s not good, it’s horrible.”, she hugged me and rubbed my back.  Then she stayed with Evelyn as I walked my mother-in-law, my husband and children out to the Elevator.   After they left I said goodbye to my step-mother.  At this point it’s nearly 10:00 at night, I’m alone in a hospital room, staring next to my sweet baby, who looks perfect and facing this biggest and most terrifying challenge of my life.  I laid in bed and cried and cried and cried.  It was then that I cried out to my Father in Heaven.  I didn’t know what to do with myself so I just began to pray and to read God’s word.  It didn’t matter what chapter, or what book, I knew that God would guide me to the words I needed to hear and I knew that His word does not return void and that there is power in His word.  Through prayer, eventually I fell asleep for a few hours and morning came.  Nurses came in and test after test was performed.  My level of emotional exhaustion was at an all time high.  I couldn’t take any more tests.  I couldn’t ‘pin down’ my daughter for one more blood draw.  I couldn’t explain what was going on to one more family member.  It was all I could do to survive the moment and not run from the building in an effort to erase all that had been told and go back to my life, the life I had three days prior.  At times I wanted to call my Doctor and beg for medication.  I wanted to be numb to the pain I was feeling, I just wanted it to go away and was sure I would be unable to survive this.  God’s love is so strong for me and over the days He showed me how I could not only survive it, but be triumphant in this situation in His power and His might.

Each day was a battle.  A spiritual battle where I slipped in between the will of God and pity.  I wanted to trust Him, I would pray, read my bible and then I would want to tell any stranger walking by the tragedy I was facing in search of some sympathy.  I wanted to feel validated for the pain I was in.  Did I not realize the pain Jesus endured as He died for me.  What more do we need to reach out to Christ than to realize all that He has gone through for our salvation.

In the days to follow I began sleeping with Evelyn at night.  Feeling her heart beat and her breath on my face was the only way I could sleep.  I felt that no matter how much I felt like I had ‘lost’ her, I could open up my eyes and see her sweet baby face right next to mine.

The nurses were wonderful, they treated Evelyn like their own.  They were invested in her and in her healing and many are still keeping tabs on her progress.

Holding it together for my children
My husband would visit at night and on occasion bring my two older children.  We would go to the cafeteria and have dinner together.  I tried so hard to look happy and to act happy, but inside I was aching.  At one point my daughter (6yrs old) asked me “Mommy, when will your eyes be dry again, they always look wet.”  I told her I was trying, that I was praying, and that they would be dry again someday soon.

In the many hours of alone time I started to question everything and wondered if I had caused this? I thought about every food I had eaten when pregnant.  I thought about the occasional diet soda I drank, knowing it was filled with horrible things.  I remembered the tetanus shot I received while pregnant because I cut myself on a rusty railing.  I even thought of the ridiculous number of colds my baby had contracted in her first 6 months of life and all the times I used the nasal aspirator on her nose – wondering if that could have done something…  What it all comes down to is this:  Am I going to trust God with my life?  We live in a fallen world that is dying and decaying,  and sickness and disease is all around us… I don’t believe that God caused my daughter to be sick – however I do believe that in all we go through, even Infantile Spasms, He will equip me for the journey!

God had prepared me for this, knowing all we were about to embark upon as a family.  Leading up to this tragedy I had spent over 25 hours learning and studying the Holy Spirit.  It was in this time that God prepared me for all we would come against.  Within my study I would keep notes as to what the Holy Spirit was revealing to me,  the last note I left before everything happened was this:

“It’s embarrassing to say but I never really knew what anointing meant?  I basically had surmised that people who were anointed were ‘special’ to God and that it was a type of person rather than an experiential anointing.  I am realizing so much time has been lost, wasting time, not truly getting to know what it is I’ve said I believed.
It’s exciting to think that God will anoint me to fulfill a purpose of His.  That I can walk in His Power, anointed, to bring about changed lives through Christ!”

Not only did God prepare me and teach me, he enabled me to teach others.  I had so many opportunities in the hospital to share the love of Christ and to share all the Holy Spirit had taught me.  Faith is nothing if it doesn’t change lives and Jesus Christ changes lives!

Blog Entries
Out of a need to share with family and friends all that was going on and a desire to  not have to painfully re-tell everything over and over, the blog entries on this web-site began and the rest of  our journey is found within those pages – a journey of hope and faith!

Still to come:

Going home…

Going to Boston…

Boston’s stay.. families met like Doug, Anna and Victoria.  Jaylen – 2 yr old with IS.

Home again…

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