Hi, my name is Lexi and I am telling you my story from Heaven. I was born August 11, 2002 on a warm summer afternoon, in the comfort of my own home. It was truly a lovely experience up until the time when my mom had to start pushing me out.
The doctor thought it should only take her about a half hour to do this, but as hard as my mom pushed, I just wasn’t budging. The doctor put my mom in all different positions and my dad was great cheerleader for us, but it wasn’t until about three hours later that I finally came out. Unfortunately, somewhere during all that pushing, I wasn’t getting enough oxygen to my brain and I suffered severe brain damage. So, when I finally entered this world, after three difficult hours of being stuck in the birth canal, I was unable to breathe. CPR was initiated and the doctor tried to put a tube down my airway (intubate) to get me to breathe, but he was unsuccessful. Before I knew it, I was being whisked away in an ambulance with the paramedics, my dad, and my doctor to our neighborhood hospital less than five minutes away. There, a doctor was successful in getting the tube down my airway and I began to breathe immediately. When they took the tube out, a short while later, I was able to breathe all on my own. So, although I was breathing on my own now, the damage had already been done. From this point on, I knew, my life was going to be challenging!
Shortly after the nurses cleaned me up in the nursery and the neonatologist checked me out, I started to move my arms and legs kind of strangely, and they suspected I was having seizures. The doctors ran blood tests and the results were all out of whack. The hospital called over to another hospital with a special intensive care unit for newborns and after hearing what was happening, they immediately came over to pick me up and transfer me to the other hospital where they could do more specialized testing and care.
Over at the second hospital, I spent 25 days hooked up to many tubes and machines, getting tests, medication and therapies. Everyone was working hard to help me get better. My mom and dad came every day and I had lots of visits from relatives. It was touch and go in the beginning and the doctors didn’t know if I was going to make it. But as the days went on, the seizures subsided and I became more stable. Unfortunately, the results of the brain scans were devastating and the doctor said the brain damage was so severe that I would most likely never be able to walk, talk, eat by mouth, or even recognize my own family members. He also said that 50% of babies born with my type and severity of brain damage (HIE) die within the first year. My mom and dad cried so hard and I just wanted to yell “Don’t listen to him, mom and dad! Only God and I know what the future will bring…just have faith and I will do more than any doctor would ever imagine!” And sure enough, I did!
Before I left that hospital I learned to drink from a bottle and breathe without needing extra oxygen. I also learned that the smells and sounds of the hospital made me scared and I learned that the sound of my parent’s voices and their touch calmed me down. I’d say right there, those are pretty big milestones for a child with severe brain damage!
When I finally came home from the hospital, I was showered with love and affection from my parents, sisters, grandparents, aunts, uncles, cousins, neighbors and friends. I knew my life was going to be challenging, but with all of the love I was surrounded with, I knew I could make a difference in this world. I also knew I could accomplish the goal that God gave me, and that was to improve the quality of lives of the people I encountered through out my journey in life. I found out early on, that my parent’s goals were to provide me with the most amount of love that any child could have and to give me every opportunity to live life like a normal kid, despite my brain damage and my diagnosis of cerebral palsy. And that they did!
Although my days and weeks were busy with many different therapies such as, physical, occupational, developmental, and speech therapy, to help me learn how to roll, sit, crawl, and play, I also got to do a lot of fun stuff, too. I went to the park, the zoo, carnivals and even water parks! I went to a Bull’s game, a Cub’s game, Six Flags Great America, and camping trips! I even got to go to Disney World and ride the It’s a Small World ride with my mom, my dad and my sister, Emma. I sat on Santa’s lap, went to Easter Egg Hunts, and went trick-or-treating. When I turned one, I had a big birthday party and even shared the party with my sister, Kate; she turned sweet sixteen! All of our family and friends came and I got to eat cake for the first time. I even smiled for the first time in front of a large group of people at my first birthday party. I try to remember those times the most, but unfortunately, I did have some really rough times as well.
My first year, I was healthy for the most part. I did get a virus called RSV when I was six months old and needed to be hospitalized for about a week. It took me about a month to recover completely, but after that I was fine for the rest of my first year of life. Shortly after I turned one, in the Fall of 2003, I developed seasonal allergies which caused me to produce a lot of phlegm and cough a lot around the fall and spring seasons. Often my cough and stuffy nose would turn into a sinus infection and I would get really sick. My allergies were very bothersome during October and November of 2003 and all that extra phlegm would often cause me to vomit, especially after drinking my milk.
In November of 2003 when my seasonal allergies were at their worst and my resistance was low, I got pneumonia and needed to be hospitalized. The pneumonia made it difficult for me to breathe so I needed to be put on a ventilator to help me breathe. During that hospitalization I was treated with antibiotics to fix the pneumonia and the nurses put a tube down my mouth and into my lungs often to help suction out any fluid and secretions. I really hated that part! The doctors also needed to place a central line into one of my veins so that they could draw blood on a regular basis. Unfortunately, during the first attempt at this procedure, the doctor went through the vein and hit the artery. The second attempt at placing the central line was successful; however, afterwards my leg started getting blue and very cold. The doctors, at this time, just thought the artery was spazzing from the trauma of the event, and that the leg would go back to normal in a little while. Unfortunately, my leg continued to get more mottled looking, had a very weak pulse, and was still very cold.
My nurses at the hospital tried to warm my leg with a heating pack in hopes to improve the circulation of my leg, but instead caused second degree burns to the majority of my right leg. They did not realize they were burns right away, they thought it might be something to do with the vascular problem. Later on they realized that they were, in fact, burns and a plastic surgeon was called in. The marks on my legs prompted the doctors to do a Doppler test that revealed that the procedure performed the day before, to place the central line (when the doctor went through my vein and into my artery), actually caused an abnormal connection (fistula) between the vein and the artery, a tear in the arterial wall, and a clotted artery. As if the burns weren’t enough trauma for me to endure, I had to have a complicated six hour surgery Friday evening to repair the damage to the artery and vein in my leg. Although my pneumonia was just about gone and I should have been off the ventilator by now and possibly on my way home, I had to stay on the ventilator longer so that I could have the vascular surgery and recover from that without any risk of respiratory stress. However, since my pneumonia was healed, I was starting to become more awake and alert and unfortunately, this meant I could feel the awful pain from the burns on my leg.
After spending longer in the hospital than first expected, I was finally released on Thanksgiving Day (2003) with home health care daily from a nurse to help treat my burns. I also now had a feeding tube (NG tube) down my nose and into my stomach because I refused to eat due to the pain in my leg. Each day the pain became more unbearable and the Monday after Thanksgiving I was brought back to the doctor (who treated me in the hospital for my burns) for a follow up appointment. He said the burns were getting worse and I may need to be hospitalized again. So, at that point, my parents decided to take me to a different hospital that had a specialized burn unit for pediatrics. It was there that they diagnosed my burns as 3rd degree and stated that skin grafting surgeries were the only way to treat them.
I spent the next month in and out of surgery with a total of three skin grafting surgeries to completely repair the damage that was done. This included frequent intubation and extubation episodes which only worsened the oral aversion that I developed after the last time I was on a ventilator from the pneumonia, as well as frequent painful dressing changes. Although I was able to be home for Christmas with my family in December of 2003, I returned to the hospital in February of 2004 to have another surgical procedure to place a feeding tube directly into my stomach (G-tube), so that we could take the one out of my nose. You see, all of the pain and trauma I endured from the burns, follow up procedures, intubations, etc., caused me to not want to eat or have anything in my mouth, not even my favorite pacifier! It didn’t take long before I forgot how to suck.
My mom is a speech therapist and worked really hard to try and get me to eat again by mouth, but she knew that brain injured children are different than normal kids, and take much longer to regain lost function after a traumatic experience, if ever! She didn’t give up hope, but succumbed, in my best interest, to have a feeding tube placed in my stomach until she could teach me how to eat again by mouth. Little did she know her most difficult client would be her own child!
Once again, the doctors reassured my parents that this procedure to place the feeding tube was a simple procedure and would only require an “out-patient” visit. Well, what none of the doctors could understand was that nothing was “simple” with me and each procedure that they tried to do, often followed with a new set of complications which then required more medication and more follow up procedures. Once again, this procedure was no different from the others I had in the past, and as my parents feared, did not go as smoothly as the doctors had said it would. They made me stay in the hospital that night to monitor my condition. As usual, it was awful! Tubes, IVs, monitors, medications, needles, sterile smells, and an uncomfortable bed were par for the course. I didn’t sleep a wink and was fussy and irritable the whole night through. I had to be given IV antibiotics during this hospitalization and that wiped out all the “good” bacteria in my intestines causing the overgrowth of bad bacteria and an infection called C-Diff to set in. This was wreaking havoc on my digestive track causing me to have terrible diarrhea and vomiting. My parents were devastated, because after my last hospital discharge, they promised me they would never put me back in the hospital. I think they were heartbroken that they broke their promise and I was the one suffering. That next day, with the kind help of the Palliative Care Program (a program run by physicians that treat chronically ill children in the comfort of their own home), my parents were able to take me home! I knew the comforting sounds and scents of my house the second I was carried through the front door. I immediately fell asleep after my mom put me in my favorite swing and turned on my favorite music.
It was from that point on that my parents realized I was not “fixable” despite the doctors many attempts and that the past hospitalizations may have fixed one problem but caused three more in return. They noticed the sparkle in my eyes fade after each hospitalization and the motivation and will to improve lessened and lessened. Although the decision was hard for them to make, they knew it was the only right choice for me…I was never to go back in the hospital again. They put their faith in God and decided it was not fair for them to put me through such pain and agony during each hospitalization, only to have me end up worse than I was before. They believed that their job, from now on, was to protect me and keep me as safe, comfortable and happy as possible. My parents believed that it was God’s decision to determine how long I stay on this earth and/or when I was supposed to return to Him. They saw how relieved I was to be home and how relaxed I was compared to the pain, suffering and fear they saw in my eyes while I was in the hospital. Their decision was made and I was thankful!
By February of 2004, after my last hospitalization, I was a different child than I was just a few months before. I required three times as much medication, a new way to be fed through a tube in my stomach rather than the simple bottle I used to drink from, daily dressing changes for my burns and for my feeding tube site, not to mention weekly follow up appointments for the burn doctors, the gastroenterologist and many others. I slept 75% of the day due to all the medication I was on. My therapies were on hold for a while and then slowly resumed. However, all that had happened to me over the past few months caused so much regression in the skills I had worked so hard to gain during my first year of life. I was no longer able to roll over, sit up, stand unassisted while holding onto a chair, suck from a bottle or on my pacifier, or eat baby food or my favorite biter biscuits. It was almost like I was starting from scratch again…only this time I had to deal with pain as well.
My parents were hopeful and determined to pull me out of my slump and slowly but surely my body began to heal and adjust to the new medications and new way of being fed. I began working hard in therapy again, the snow melted, seasons changed and I finally became well enough to go on outings again to the park, grandparents’ houses, the pool, and camping trips. My parents knew, however, that I never fully recovered after the awful series of events that followed my episode of pneumonia back in November of 2003. Their hearts were saddened by that thought, but they were determined to give me the best quality and comforts of life any special need’s child could ever have. And once again, they did just that!
On my second birthday, my parents took me on my very own camping trip where I got to spend the day with my mom, dad, my sister Emma, and close friend Margaret. I even got to get my picture taken with Yogi Bear himself! When we came home, my grandparents came over for a special birthday celebration. After they left, I gave my mom a special birthday present from God and me by saying “mama.” It made my parents cry and although I was never able to say the word again, I knew that the memory of that gift would last a lifetime.
October of 2004 was healthy and filled with fun fall camping trips and Halloween parties! My parents had begun planning for me to go to preschool next fall and my sister Emma gave me a cool new firefighter backpack that I was saving for that special event. I was feeling good again and smiled for my family every day!
Unfortunately, with the Fall season brought seasonal allergies, and my doctors struggled to manage my symptoms with prescription allergy medicines. I was holding my own and looking forward to the first frost when we had unseasonably warm and rainy weather in the middle of November, 2004. My allergies flared up in full force and after about a week, turned into a sinus infection.
And that is the beginning of the end of my story. The evening of November 22nd, I threw up from the thick phlegm and draining sinuses in my throat that I could not swallow and up came everything else in my stomach with it as well. I was so weak from my infection that I could not swallow any more. Some of what I threw up went into my lungs (aspiration), now making it difficult for me to breathe. My mom called my dad home from the fire station. They called the Palliative care doctor and nurse, they instructed them on what to do. They put me on oxygen, which helped and they kept me right by their side the whole night through.
Early the next morning, the nurse came out and said I had pneumonia, but that my lungs didn’t sound that bad and that with antibiotics, oxygen, and a lot of TLC, I had a good chance to pull through this. But what the nurse didn’t realize was that I had run out of energy to fight the battle anymore. I had gone through more in the past two years, than most people go through in a lifetime. I had overcome obstacles no one ever expected me to overcome, but this time, I knew my mission was complete on this earth and God would soon be calling me home to live in His paradise. As much as I loved my family here on earth, the struggle was more than I could bear and I knew that one day, we’d all be reunited again. So, as the day went on, I progressively got worse.
My breathing became more labored and I became weaker and weaker. My grandparents came to visit that night and prayed they would see me in the morning. My pastor came by to pray with us and pray to God to give us all strength. My parents and my sisters stayed up with me until after midnight reading me books, holding me, singing to me, and praying with me. I was so happy to be in my warm snuggly pajamas, in the comfort of my home, and in the arms of those I loved the most. I kissed my sisters goodnight shortly before 1:00am, and they too, prayed they would see me when they woke up. But God and I had plans to be reunited soon and at 1:10 am on November 24th, 2004, in the arms of my mother, while my father held my hands, I took my last breath and ascended up to heaven.
Now my job on this earth is complete and I have bigger and more important goals to accomplish from up here, Helping From Heaven. I am now an official angel and I am watching over all of my friends and family every second of every day. To all of you who helped contribute to the comfort and quality of my amazing life on this earth and to all of you who supported my family during their most challenging days, I thank you and I will keep a close eye on you and your family! I want everyone to cherish the fact that life is a gift and learn from the struggles we all share. May the challenges I faced in my life help you all to be stronger in yours! God Bless!
Love, Lexi