This is the true story of my daughter’s life and hardships. I appreciate all of you that take the time to read it. 

Dear Kayla, 

From the moment you were born I knew I loved you more than anything. I was scared at first because your head was bright red, purple and bruised, but they assured me you were fine and it was just from getting stuck in the birth canal.

I knew they should have taken you out by c-section, baby. If I could do it again, I would. Even if I am not sure it would have made a difference now. 

I wanted to hold you so bad but their jobs weren’t done. The doctor was stitching me up and they were trying to help you breathe. I looked longingly at you from across the room waiting, but I passed out from the medication they gave me afterwards, and I’m sorry I wasn’t there for you.

They brought you back into the room with me after everyone had left. They didn’t bother to wake me; I had been passed out since you were born. I had been in labor for three days then baby, but I sensed you were in the room and I woke right up. You were lying in your bassinet next to my bed and all the lights were off. Your father was asleep in the chair next to me and I wondered where everyone else had gone. Last I saw of them was after my last push, while they were helping you breathe.

I hadn’t got a chance to really hold you yet. They had set you on me to cut your cord but they lifted you off before I even got a chance to touch you. Now I saw you laying there and it was our time. Everyone was gone and we were there in that dark room. I picked you up and kissed you and I swear to god, baby, I will remember that moment for the rest of my life. It was just you and me in the dark.

The next day the family all came back; they hadn’t gotten to hold you since the nurses had taken you to the NICU after you were born. They had been waiting to meet you for so long. The nurses told me you were fine now. You were just having some trouble at birth. Your head was still a mess, and I remember asking if they could bring you baby Tylenol. All day your family took turns holding you and loving you. I missed you every time you weren’t in my arms.

kayla brand new

Sometimes you would make this noise that scared us all. You still didn’t breathe right and something just felt wrong.

After everyone went home I tried to nurse you again. You hadn’t been able to latch on all day but I wanted to give it another shot. After a few minutes I realized you weren’t even trying, not even rooting. I called the nurse who once again told me everything was fine, “babies normally aren’t hungry the first day.” At 9pm I was trying to nurse you again because you were crying. The nurse happened to come in to check on us and decided I might like the help of the lactation counselor. When the lactation counselor came in you were nuzzled to my breast and she was trying to push your chin up to my nipple. We were about to experience that bond between mother and child, that beautiful moment of nursing for the first time.

You had a seizure right then, baby. I remember your little fist curling in and your eyes darting back and forth. The nurse took you out of my arms right then. She told me she would be back and rushed out of the room with you, leaving me sitting there with my breast exposed, waiting for that beautiful moment.

I waited hours, worrying, wondering what was wrong. I called the nurse over and over and they told me they were still checking you out. They were doing an EEG and I couldn’t come back to see you.

At 1am I called my mother. I was so scared. She answered the phone and heard me sobbing hysterically. “What’s wrong?” She said. “Something is wrong with the baby…” I replied barely able to finish the sentence before she snapped “I’m on my way.” and hung up the phone.

Your father had been sleeping in the chair next to me when you had that seizure, I woke him up after you were gone and he tried to calm me. “We’ll just have to wait until they bring her back in.” He assured me, “She’s fine, it’s just a precaution.”

By the time my mother had arrived, 12 minutes later, I was pacing the room. They wanted to do a spinal tap, they were saying things like “seizures,” “abnormal EEGs,” and “We don’t know what is wrong.”

I got to go in and hold your hand after the spinal tap, baby. I had never been so frightened in my life.

By 7am they wanted to transport you to Children’s Hospital. They had arranged a transport team and everything. I told them I wanted to go with you. They told me I couldn’t leave until my doctor discharged me and I told them “Like hell I can’t.” They found another doctor who came in while I was holding your hand as the transport team got you ready. He gave me the okay, but I couldn’t ride with you and it almost killed me.

I watched them wheel you towards the elevators; I could barely see you through the tears in my eyes.

Once I got to Children’s, you were already hooked up to all sorts of wires and monitors. I came to your bedside and kissed your little hands. I told you I was there for you and that I wasn’t going anywhere now.

The days after that were such a blur. It felt as though I was living a nightmare and it had been years since you first arrived. They took you for all sorts of tests and put you on a feeding tube that went through your nose. I still wanted to nurse you so badly, I wanted to hold you close to me without all those wires but I couldn’t.

After they gave you an MRI, the neurologist and the social worker took your father, your grandmother and I into a little room to tell us what they had found.

I wasn’t prepared for that moment, baby, and to this day I can’t believe what they said;

“Your daughter has suffered massive bilateral cortical strokes. There was a blood clot in her brain that kept the blood from getting to the rest of her brain. Once a person’s brain is without blood, without oxygen, that part of the brain dies and can never come back. Your daughter has extensive brain damage. A majority of her brain has been affected. Her prognosis is not good. She will most likely be extremely mentally disabled, hemiplegic, and will fall on the severe spectrum of cerebral palsy. She will never walk, talk, or eat without a feeding tube. “

“I am so sorry. Some parents, who are faced with a situation such as this, opt to have their child removed from the feeding tube and let their child go naturally. If this seems like an option you want to look into, feel free to let us know. And again, I am sorry.”

At that moment baby, I died inside.

Anger consumed me at that last second and I snapped at that doctor and social worker. I used some very bad words, baby, ones I don’t even want to repeat. How could they expect me to let you die? How could they even say such a thing to the three people who loved you more than anything in the world? We were going to take care of you. We were going to make sure everything was alright.

I have never had hope in anything as strongly as I had in you. I would rock you by your bedside, tubes and all, and sing to you. I would see the nurses whispering to each other. They couldn’t understand baby, why anyone would cling so dearly to a baby that was just never going to be normal. They didn’t understand the hope I had in you. It didn’t matter anyway, I would love you no matter what.

When I told the doctor he was wrong, he would tell me that MRI’s don’t lie. I didn’t care what it said. I didn’t care what he said. You were my miracle baby. You were going to be okay.

While you were in the hospital, we stayed at the Ronald McDonald house across the street. They were nice enough to take us in so I was never far away from you.

I would sometimes cry myself to sleep, baby, telling myself over and over you were going to be okay.

The NICU there would only let the parent’s of the children be in the NICU at any time. But that didn’t stop your family (your grandma’s and grandpa’s, aunts, and uncles, and even friends of the family), from sitting in the waiting room across the hall for hours each and every day that you were in there. People skipped work, sat in uncomfortable chairs just to be there for you, even though they knew they wouldn’t get to see you. Sometimes the nurses would let us wheel you over and hold you up to the glass so that they could catch a glimpse, or even snap a few pictures.

kayla nicu

kayla nicu

kayla nicu

kayla nicu

kayla nicu

You were so incredibly loved.

One day, your father and I just had this feeling. We told them to turn down your seizure medication, which was at such a high dose, you were practically in a medicinally induced coma. Later that day, you opened your eyes.

I asked them if I could try to nurse you. I had been dying to do so since that first moment in the hospital when you were ripped from my arms. They told me I couldn’t do that. If you did start to eat on your own (which they doubted) they would need to monitor the ounces you took. I told them “Fine, give me a bottle.”

You took that bottle like you knew exactly what you were doing. Your father’s and my eyes lit up and emotion poured over us. The nurse couldn’t believe it. This little baby with extensive brain damage so bad we were told she would never eat without a tube was sucking down a bottle like any other baby could.

This was the moment that I knew deep in my heart, you were a miracle. My little miracle.

From this point on I was at your side even through most of the nights. I would come every 3 hours to feed you your bottle. It would take us 20 minutes from the time we woke up at the Ronald McDonald house to get dressed and get up to the NICU to feed you your bottle. After hours, the main doors to the hospital were closed and we had to walk all the way around to the emergency entrance and up to your floor. I would come in and kiss you and feed you your bottle at 9pm, 12am, 3am, and at 6am. At 9am I would come in to spend the whole day, every day with you. I only returned to the McDonald house to rest a few moments here and there, then would be time to get dressed again to come see you.

Every moment I was with you was like heaven, baby.

Although what you were doing was leaps and bounds over what they thought you would be able to do, the doctor’s made sure that we were aware that this didn’t mean you were going to be okay. They told us you would still never be able to walk that your cerebral palsy was going to be severe. That your hands would start to contort and your muscles would atrophy. It just wasn’t going to be as severe a case as they once thought.

You father and I didn’t give them much credibility at this point and just wanted to take you home. They made us set up home visits and tests and neurology appointments. They wanted us to take classes on learning how to care for children with disabilities. They even enrolled you in a neurological study to track your development and to give information to other parents going through what we were going through (And you are still involved in this study to this day! You go every month!).

We agreed to their demands and pleaded that they surrender our daughter. We thought of that place as a prison for you. Many times I dreamt of sneaking you out the guarded doors and running home with you. Home to a place where no one told us how messed up you were going to be. A place where we could just hold you and believe what we wanted to believe, with no one around to tell us how ridiculous we were being.

On the day that you were finally allowed to come home, we brought a special outfit for you to wear. Your grandmother had crocheted a little pink dress and matching hat which she had worked on in the waiting room all these days. We helped the nurse disconnect all your wires and tubes, including an IV that had been placed in your head because all the veins in your arms, hands and feet kept collapsing each time they put the IV there.

When we held you for the first time without the wires and tubes, we almost felt uncomfortable; like you were so fragile you could fall apart at any moment. I almost didn’t like the fact that I couldn’t look up at the monitor to check your heart rate every few moments as I had grown accustomed to doing. I was happy though.

When we walked through those doors of the NICU we almost broke out into a sprint. It felt as though we were stealing you and they would catch on at any moment.

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The next year of your life went by so fast to me. You were constantly in and out of doctors’ offices during your first year and none of them could believe the things that you were doing. I remember your first visit with your new neurologist:

She sat down and looked at you and then looked back at your chart and back at you in disbelief. She asked us, “This is Kayla XXXXX?” and we shook our heads yes, and she said “I think I have the wrong chart.” She could see this little girl sitting there smiling up at her through the block which you mashed up to your face and was unable to connect it with the chart in her hand. It blew her mind and she often made jokes with us after that, that we had somehow switched children with some couple that had a “normal” child.

The first time you sat up, crawled and walked were the best days of my life. I don’t know how you did it, baby, but you did and I am so proud of you.

Things started going so smoothly that I feel like I started taking them for granted. Time passed, you were practically a normal child. You had been off your seizure meds since you were 6 months old and you only had a little tightness on your right side. You had grown up to be this wonderfully energetic miracle toddler. You were already showing signs of mental impairement, but you were still doing wonderfully in our eyes. Your language and gross motor skills were getting further and further behind, we were constantly in evaluations for physical therapy, occupational therapy, and speech therapy. You were so strong-willed, though, nothing would stop you.

Mommy and Daddy were having another baby. We decided you needed a friend, someone to learn from and to teach. I wanted you to have that bond you get with a sibling that is close in age like my brother and I share.

One day you were finger painting with your cousin Ashlee in Grandma and Papa’s living room. We were right inside of the screen door and I could see the back of your head while you were painting. Your cousin Sean came in to say hello to you and the look on his face scared me to death. From the back you looked as though you were sitting still on the floor. But when Sean went to pick you up and Ashlee asked “What’s wrong with Kayla?” I came running through the door.

When I took you from his arms I saw my little girl with her eyes rolled back into her head. Your body was limp and heavy and felt different from when I carry you out of the car when you are sleeping. I screamed to my mom to call 911. You weren’t responding to me talking in any way. Just dead weight. Your eyes never moved from being rolled back into your head no matter how much I talked to you and screamed “Please, look at mommy, Kayla, Please!” Every few seconds your arm would tense up and tighten as hard as a rock and then fall limp again.

I had been working as a nursing assistant after you were born at Children’s Hospital. I wanted to be there for kids that were going through what you went through. I had seen kids have several seizures every day. None like this. Ten minutes had passed and your eyes were still rolled back into your head. You still weren’t responding. We were still waiting for the ambulance to arrive.

Let me tell you, baby, I can’t describe how I felt at that moment.

I thought I had lost you.

I thought I had lost your smile, I thought I would never chase you down the hall again while you giggle.

I thought I would never tuck you in with ‘Bill’ and ‘Teddy’ ever again.

When the ambulance arrived they told us they would take you to Children’s Hospital again. I was going to ride with you this time. You still weren’t responding.

As we were driving, the EMT yelled for the driver to go to a different hospital instead. A closer hospital, one not meant for children. You still weren’t responding. They had to give you a tube in your nose to help you breathe and your O2 stats kept dropping anyway. They had given you seizure medication but it had done nothing. Seizures are only supposed to last one to two minutes, you were going on a half hour.

We arrived at the hospital and you were given several other seizure medications. Nothing helped and even with the oxygen mask your O2 stats kept dropping below 70.

I told you I loved you and begged you over and over not to leave me. Please don’t leave me baby. Please, mommy loves you. Mommy can’t live without you. Please.

At this point, the doctors there were worried you may have had another stoke. We had been told it was possibility that you may have more strokes; as we were told that strokes in children have a tendency to recur. But they had always said if you had another one it would probably kill you, there isn’t much of your brain left to die. You need what you have to survive.

It was imperative that you be transferred to Children’s because they had the kind of equipment and skills to deal with it. They sent for another Children’s transport team.

Once I was in the ambulance with you it had been four hours since this whole thing started. You still weren’t responding despite the many medications given. As I was riding in that ambulance, I started to worry that this whole thing had come full circle, was I going to lose you now? This is how your life started out. Was this how it would end?

I needed your smile back, baby girl.

Once we got to the Children’s PICU it felt as though a weight had been lifted off my shoulders. The doctors and nurses were actually listening to me. They were focusing their attention on you and knew your history well. 

It only took about 45 minutes for them to get your seizure stopped. Altogether you were seizing for about 5 hours. You weren’t just in a normal seizure. You were in Status epilepticus. Most people never come out of a seizure if it lasts more than a half hour. Yours lasted 5 hours. I’ve been told by several neurologists since then that they have never seen a child last longer than 2 hours in SE and survive.

Tell me baby, who is watching out for you? Who keeps giving me back my baby when all medical hope is lost?

 After a day in the PICU, you started waking up a little bit. Here is a picture your uncle Chris took of you in your hospital crib.

kayla picu

When you came home you were a different girl. That seizure had been the tip of the iceberg. Now you would continue to have seizures almost constantly if you did not have medication. At first you were having 5-6 seizures AN HOUR despite being on the medication and your personality was changing. We got you on the waiting list for a seizure alert & response dog in the hopes that I could sleep a little more soundly at night.

Your little body has been through so much, baby, I don’ know how it does it.

Now that we have reached the highest dose we can give you, your seizures have calmed down to once a week. It’s still hard to watch you have them, but it’s better than it was.

I still have to worry everyday whether or not you’ll go into Status epilepticus again or have another stroke. I treasure every smile you give me, Hell, I treasure every time you tell me “No!”

Your story isn’t over, actually it has just begun. You are only two and a half and this story has a lot more words to be written.

I love you every day, baby, I love you every second. Thank you for coming back to me and Please, PLEASE baby girl, never leave me.

kaymay

Love Always,

Mama

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UPDATE:  03/25/11.

It has been almost 4 years since I wrote this. I can’t believe it. I had decided to give an update on Kayla for anyone who finds this blog through googling if their child had been through something similar.

 

Kayla is almost 6 years old now. She attends a special kindergarten class for disabled children and LOVES it. She is really social. She thinks everyone is her best friend. She has since this post been diagnosed with Cerebral Palsy but the effects are VERY mild. She has some spastic movements that she exhibits when she is excited, scared, anxious. They have gotten worse with age but most people don’t notice and think she is simply excited.

Some other effects of the cerebral palsy are that she runs with a Scissor gait.  She still has some weakness on one side and has a lot of trouble with keeping her balance.  From the time she was aged 2-5 she was attending Physcical Therapy once a week, Occupational Therapy twice a week and Speech Therapy four times a week. This made a HUGE difference, I highly recomend keeping any kid who has had Perintal strokes available to as many therapies as possible. It will really improve their outcome!

Her epilepsy has been under control by medications for about a year and a half. She still is on the highest dose twice a day and likely will be for a very long time but seizure free for a year and a half! Yay! So amazing!

She still has some mental delays but is one of the happiest children you could ever meet! She is amazingly smart, and loves trying anything. She has one of the strongest wills I have ever seen. We are SO incredibly proud of her. She truly is our miracle.

If you are going through this as a parent, HAVE HOPE. Children who have perinatal strokes/pediatric strokes can do wonderful things! Here is a video of our little girl who we were told would never walk, talk, or eat without a feeding tube READING. She is AMAZING.

I will try to continue to update this page for those of you who have been going through something similar with your infants or children.