What a year it’s been baby boy! A year ago today at 1 pm you were born and immediately taken away from me and placed on oxygen. You were breathing too fast but at first glance that was the ONLY thing wrong with you. You were beautiful and perfect and so BIG the doctor almost dropped you upon delivery. Your older brother Owen was so excited that you were finally here. He wanted to be the only one to hold you but the nurse said she needed to take you back to get to the bottom of what was causing your breathing issues. You were in the hospital’s NICU for five days. I was an emotional mess because I think deep down I knew something else was going on. The pediatrician said that you just needed time to adjust to life outside the womb before you could come home with us, but something just didn’t feel right. I kept asking the nurse how long it usually took for babies to regulate their breathing and my heart dropped on the fourth day when she said that normally it only took three.
It was Friday morning when our world came crashing down. I was at your granny’s getting ready to come and see you when the hospital pediatrician called and told me that you had gotten sicker overnight.
“Something wrong with his heart…cardiologist has been called…need to get here as soon as possible.”
My hormone riddled body couldn’t process the next steps to take. I tagged my purse off of the couch and shot to the front door sobbing and calling Zach. He wasn’t answering! What the hell, he needed to answer! I called again and again. I was losing it. I got in my car when he called back and told me he had been on the phone with the doctor who called him when I hung up sobbing. She wanted to make sure I didn’t try to drive myself to the hospital in the state that I was in. “Baby, calm down. Our baby boy is going to be fine.” He repeated that over and over. With a guttural cry I asked that one question that haunts every parent’s heart …“Is our baby going to die?”
“No! Amy our boy is strong and he’s going to be fine. Go to your mom’s school. I’m going to call there and your dad. DO NOT drive up there by yourself. Promise me.”
I agreed, my mind going numb with grief. How I got to your granny’s school is a mystery. Once Popo arrived to take us I sat in the back of the car and laid my head on the back of the passenger seat. I don’t even know if your Popo and Granny asked me anything, I was that gone. I must have gone somewhere else in my mind because I cannot recall a thing about that drive.
When we arrived we flew up to the NICU. Coming to your room I stopped and stared. There were at least a dozen nurses and doctors surrounding your tiny bed. I approached slowly and they looked up, parting like the Red Sea. I must have looked pretty scary because one of the nurses got me a chair to sit in next to you. Your tiny chest was working so hard to keep you alive. I touched your foot, your hand, your head and the nurse asked if I would like to hold you. I nodded mutely. She placed you in my arms and the tears immediately started to fall again. Everybody else went away and it was just me and you baby boy. I rocked you until your daddy arrived. He walked in and I completely lost it again (yeah I know…again) and the nurse quietly took you back to your bed. He held on to me whispering in my ear that everything was going to be okay. That we just had to pray like we have never done before and God would see us through.
Your daddy is one of the strongest men I know, but seeing you so tiny and so red from having to work so hard to keep on breathing broke him. I think that was the only time that I was the strong one. I wrapped my arms around him as he stood hovered over you and whispered the same comforting words he had just said in my ear back to him. “He’s a Hale and Hales don’t quit. He’s gonna be home before we know it.”
The cardiologist finally arrived saying your condition was too complicated for you to stay there and asked what hospital we wanted to transfer you to. We chose Texas Children’s in downtown Houston. The Kangaroo Crew was called to transport you there by plane. Gently they placed you inside a tiny box on a huge stretcher and strapped you in. I sobbed and whispered every bible verse I could remember as they took you away. Sliding down the wall of the hallway I closed my eyes and started rocking.
That’s when one of the head nurses came and sat down before me. She took my hand and said, “Hey, momma, I know you’re hurting right now but you have to get it together and take care of yourself because that baby is going to need you. It’s going to be a lot of long days and a lot of long nights and you’re going to want to quit sometimes, but you keep going and you keep going for him.”
I still remember her face. I wish I remembered her name so I could call and say thank you. It was one of the conversations that will never leave me. It propelled me into action and got me going.
The ride there was brutal. Your daddy and I didn’t speak a word, we just held on tight to each other. It was surreal seeing the lights of the hospital glowing in the night. We parked and met your Da on the way in. He hugged me tight and followed us up the elevator and to the cardiology NICU. Once there we met the doctor who said that he thought you would be best served in the general NICU downstairs. He said your heart condition was not a structural issue, instead he thought you had a virus that was causing your heart to work so fast and so hard. Once again we followed as they wheeled your small bed onto the elevator and down to the main NICU on the 4th floor. You then were hooked to over a dozen machines and wires. You had multiple IV’s and electrodes taped to your little body. No one should have to see their child that way. It’s not right. I became so angry with God at that moment. I should have been at home with you, so tired from feeding you all night, not exhausted from crying in fear for the last ten hours.
From that point on we met at least 10 different doctors with tons of letters after their names. A neurologist, a hematologist, a cardiologist, etc.. Each one had their own opinion too..
…Possible calcification of the brain, meningitis, bacterial infection, viral infection, metabolic disorder…
The list went on and on to the point where I just had to tune it out because the bottom line that I got was that you were VERY sick. To me it didn’t matter what you had as long as there was a way to treat it. I kept stealing glances at you, silently praying to God that I would do anything, give up anything if you would just get better. I told him I’d stop being so very angry at Him.
Over the next couple of weeks it was like we had front row seats to watch God’s handiwork. Test after test after test came back negative. Doctors were left scratching their heads, while your dad and I prayed and rejoiced with each negative diagnosis. We would tackle and mark off one disease or illness only for the doctors to find another one to test. Every time they explained what they were searching for on that particular blood draw I would listen with half an ear and then ask, “Can it be treated or cured?” That was the bottom line for me. Was there a medicine that would make it ok? Many times the nurses would blink a couple of times and then carefully answer me either yes or no. The “yes” ones I was ok with, while the “no” ones left me with a sick stomach.
It didn’t matter where I was or what I was doing you were constantly on my mind and God was always right there listening to my thoughts. I knew that God didn’t make this happen to you but he did allow it to. I think that was what angered me so much at first. That age old question of “if God loves us and doesn’t want us to hurt then why does he allow us to grieve and cry in anguish?” I’ve asked myself, my pastor, my dad, and even though I know in my heart what the answer is, it’s always harder to process and accept when it’s someone you love lying there fighting for their life, especially when it’s your own child. I was taught through you that I can either hurt with God or without Him and I’m so glad I had enough sense to choose the right answer.
You also taught me how to pray without ceasing. I think it was the end of that first week that they decided to intubate you in order to give your heart a break and let you heal. It was so hard seeing you like that but I knew that you needed it. You improved slowly. For a while you were sedated in order to keep you calm but when they decided you no longer needed the extra help breathing they excavated you and you started to wake up for brief periods of time. The third week you were stable enough that I got to change your diaper for the first time. Oh baby boy how my hands trembled! It was just a diaper but to me it meant you were getting better and closer to going home.
I remember the many times that I sat in the milk bank room pumping milk for you and crying silently as I listened to the soft tunes coming from the speakers. They had stories framed on the wall of children with various illnesses or diseases that had survived and were now thriving. I prayed with my entire being that your story could be up there one day, that you would be a comfort to another mother one day that was clinging to her faith in God and praying that her baby would make it. I also remember the times your big brother Owen had to come in there with me and how I had to bribe him with a new toy in order for him to stop talking or trying to change the speed on the breast pump. ;o)
On May 8th, 6 weeks later we finally got to take you home! Oh my goodness what a day that was. Everyone was at our house waiting to hold you, to love on you, to pray to God that you were there. It was the best summer ever for me getting to stay at home with you and your brother. You grew and got stronger. Two weeks home and we got to remove your feeding tube! I started a new job that August and you went to daycare while Owen went to kindergarten. It was hard leaving you but we adjusted and for a while everything was perfect. You were getting therapy each week and slowly catching up in your milestones.
But then around Thanksgiving you started these little jerks when I would feed you. It was like it hurt for you to swallow food, so I just chalked it up to your acid reflux. Over the next few weeks those single jerks turned into clusters and I started to worry. You stopped smiling as much and sleeping ALL the time like a newborn again. Then your development stopped and you became less interested in the things around you. You would just lay there. It bothered me when people called you the perfect baby because you never cried and hardly fussed. Babies are supposed to move and get into things. They’re supposed to grab for toys and babble, not stare off into space.
Everyone I talked to told me I was worrying for nothing but I couldn’t shake the feeling that something was seriously wrong. I started doing research and found a website that listed ALL of your symptoms, but when I read the diagnosis my heart stopped. No, no, no. It had to be something else. So I researched elsewhere knowing in the back of my mind that I still needed to hold on to that other website.
Over Christmas break I was not in a good place. I knew in the bottom of my heart that there was something much bigger going on with you. I ended up taking you the ER at Texas Children’s twice before a doctor would finally listen to me. I demanded an EEG and an MRI. They were only able to do the MRI that night, which came back normal, and the EEG was scheduled for that following Monday.
Your daddy and I left Owen with Nana and Da and off we went to TCH for your hour long test. You were wonderful and you even slept when they needed you to.
When we left it would be the last time that we would walk out of a hospital not terrified of the future and what it would bring for you, for us as a family. We had no idea that our world was going to be forever changed that next day.
We were at your Nana and Da’s when I got the phone call. The pediatrician reading the neurologist’s report had NO IDEA what the words “Hypsarrhythmia” and “Infantile spasms” meant but I did. That website that I told you about earlier when I was doing all of my research? You know, the one that had all of your symptoms but I was too scared to admit to myself that you might have? Well, my fears were confirmed. They diagnosed you with a form of childhood epilepsy that is classified in medical literature as the most “catastrophic” of all combined.
I told you earlier about how devastatingly hard it was to see your tiny body strapped in that box on the gurney during your transport to Texas Children’s, but imagine that pain amplified times ten. I mean, I know you beat the virus that almost took you away from us, but you had already come so far and now you’re diagnosed with something that could destroy your future? How many things was God going to allow you to go through and beat before the age of one? I was petrified and almost numb. I was holding you when I found out over the phone of what you had. I slowly stood up and handed you to Nana. The look in her eyes, I’ll never forget. She KNEW something major had happened. I started crying. Not sobbing yet, just crying. I wasn’t mentally prepared to accept the diagnosis yet, so I was still able to hold it together somewhat.
Your dad was awesome. He hugged me and told me to call the neurology department at TCH and ask what we needed to do. I shook my head and said we needed to take you downtown right away, that everything I had read about Infantile Spasms said that immediate treatment was a must and the sooner the better you were treated the better outcome you would have. On the way to Houston a nurse finally called me back. She said it wasn’t life or death that you be treated that day, but if we wanted to we could take you to the ER who would look up your EEG results and admit us to the neurology unit.
Not life or death I asked? Frankly I was appalled that a trained nurse on a neurology unit would say that to me, but she explained that she wasn’t able to give advice over the phone for treatment, that she could only encourage me not to wait and to seek help for you right away.
That night we didn’t get admitted until around midnight. While waiting in the hospital’s main lobby you were smiling and laughing at people. You hadn’t been that responsive for the past month! I’m sure everyone thought we were just being hypochondriacs about your health, because it sure didn’t look like you needed to be in the ER. Looking back I think God was trying to comfort me, trying to tell me that everything would be ok. It’s like you were happy that we had finally figured things out, that you would finally be getting treatment.
We stayed in the neurology unit for four days. They did a repeat MRI that again came out clean and another EEG confirming you had Infantile Spasms. A team of doctors came and discussed their approach to stopping the seizures. We were to give you a steroid shot every day called ACTH in your leg. If it was to be successful we would see a cessation of spasms or reduction over the next couple of days. By the end of the second week we would either wean you off of the steroid or increase it based on how you responded. ACTH has an 80% success rate and for many families it’s a miracle drug. If not there are other options, but those hopeful outcomes and best case scenarios diminish with each treatment failure. We had begun the biggest battle and waiting game of our lives.
We were, however, given some positive feedback. They told us that since you had no underlying condition, no brain lesion, tumor, or injury sustained to your brain that would cause the IS you, in fact, had a better potential outcome. With all the onslaught of negativity surrounding your diagnosis found on google and other various search engines it was at least encouraging to hear that bit of good news. But I was still terrified.
I remember asking if you would ever walk on your own.
They said, “we don’t know.”
I asked if you would ever talk.
Again, they said, “we don’t know.”
I became so emotional that I started asking a million other questions involving your development…
“What about eating? Will he ever eat on his own? Point with his index finger? Blow bubbles? Swim? Do you guys know anything?!”
Once again, they calmly answered me with their standard response of “we don’t know.”
I know now that they have to say that. That they aren’t allowed to give false hope for various ethical and legal reasons, but how do you come back from that awful news? How do you restart your heart and have a reason to keep believing? God knows I’ve been a believer my whole life, but this was the second time in less than a year that He was raining down a whole load of heartache on our family. When was it going to end? Never in my life had I wanted to talk to Job so much at that point. I needed pointers to keep my faith in tact at that moment.
We got to go home on a Saturday and by Wednesday I was a hot mess. You were having some of the worst spasms I had ever seen. I thought all hope was lost. I sobbed and rocked myself to sleep some nights envisioning having to build a wheelchair ramp for you to our house. Would I have to get one of those huge vans to transport you? Would you ever be able to say mama or dada? Would you even be here with us for that long? I was a wreck of emotions to say the least.
I feel guilty sometimes that I felt that way. I feel like I wasn’t giving you the chance to fight even after you had already proven what a super hero you were surviving what you did at birth. But I promise you will understand when you are a parent one day. How your own life’s happiness hangs in the balance when your child is seriously sick or like you and fighting an invisible enemy inside your brain. You feel absolutely helpless.
Over the next few weeks we increased the dosage to eliminate all of your spasms since the initial dose only diminished the amount of you were having. By day three on the higher dose they stopped. STOPPED! Oh baby boy I don’t think you understand the incredible, awe filled joy and relief I felt when that happened! Praise God and all of His promises! We called your neurologist who scheduled a 24hr VEEG to make sure the chaotic brain waves associated with your epilepsy had disappeared as well. THAT would be the biggest test because while getting rid of the spasms was good, getting rid of the “hyps” was an absolute MUST. Those are what could cause you the most damage if we couldn’t get them under control.
It was a Wednesday that I took you again to the hospital, this time to Children’s Hermann Memorial under a different neurologist. You started the test that morning and it was early Thursday morning that the neurologist on call came in to tell me the results. I was sleeping on the not so comfortable window seat, probably snoring when I turned around to a noise and found myself on an episode of House. Not really, but he looked like that one doctor on there and for a moment in my lack of sleep induced haze I thought I was dreaming. He had to clear his throat for me to actually sit up and realize he was real. He introduced himself and then spoke the most amazing words ever…your EEG showed no hypsarrhythmia! Hallelujah to God in the highest! Most doctors wish for a lessoning of hyps, but for you to have kicked them to the curb completely was an absolute miracle.
He did, however go on to say that they caught you having a focal seizure, but that I shouldn’t worry so much because it actually was a good thing. You see focal seizures are much easier to control and you have a far better chance of having seizure freedom on the right type of medication and at one point down the road a possible surgery to remove the part of the brain causing those seizures to happen. You’ve been on Keppra for about four weeks now and I have yet to see you have a seizure!
Oh and your development up until now? Baby boy you amaze me with your strength and endurance. Every day you grow stronger and with PT/OT each week you are starting to sit up on your own for longer periods of time. Your smile is back. Your laugh is back. Every sleepless night I spent down on my knees praying for you comes flooding back when you look at me and get excited knowing I’m about to pick you up. You hold your bottle now when you aren’t feeling lazy. You roll to toys and reach for the sun streaming through the window on the floor. You are my miracle child and I thank God for you and your brother every day. I never imagined or wanted to this new “normal” for us with your epilepsy but neither can I imagine life without you. You’re having torelearn everything and you do it with a smile on your face. You are my ultimate super hero. Batman, Spiderman, Superman, they all got nothing on you my sweet boy.
Love you my sweet boy,
Mom
