The House That Jack Built

“This is the house that Jack built, y’all. Remember this house…This was the room that was filled with love. It was a love that I was proud of.” -Aretha Franklin

I was a happy, social, outgoing pregnant lady when my dear friend would blast the above Aretha song EVERY time we got in the car after she found out that I was going to name my son “Jack”. Most of the time I wanted to vomit because she would crank the song up and she drives like a bat out of hell who doesn’t seem to quite understand the art of braking. This song has stuck with me more than I ever could have imagined in early 2016 when I used to roll my eyes as it blared in Janie’s car as she serenaded me loudly with no regard to basic traffic laws. I took this carefree existence for granted as I never expected that I would have anything but a healthy baby boy. I could kick the silly, selfish, ignorant girl that I was before July 28th, 2016.

So much has happened between the day my son was born (July 23rd, 2016) and now. I have pined to write about this for so long, but I have been unable to get the words out for so many reasons. There is a lot to tell so I will break it up in several posts so I don’t lose you before we even get started.

My name is Leah Trotter and I live in Athens, GA with my husband, 4-year-old daughter, 5-month-old son, and two dogs. Prior to my son’s birth, I worked at Athens Area Humane Society and was incredibly happy and fulfilled…or so I thought. I am passionate about animal rescue and could have never imagined that I would leave my job as the Outreach and Communications Specialist for AAHS. This is story of how my world got turned upside down.

Baby Jack, as we like to call him, was born on July 23, 2016 after a VERY normal labor and delivery. My water broke on July 22 after a night swim with my 3-year-old daughter, Rowan. My husband drove me to the hospital and  I was so excited because I so badly wanted to go into labor naturally this time. I was induced with my daughter because she had refused to leave her cozy home in my uterus. Everything was happening just like you see on TV…exciting/unexpected water break + crazy/intense/painful/funny car ride to the hospital. Cliff, my husband, pulled up to the ER doors (after asking me if he could park in the deck and walk me up…I may have bit his head off for the suggestion because my contractions were getting stronger and walking was NOT an option). Two nurses were walking in from grabbing their dinner across the street and saw that I was obviously in labor. Lucky me, they were L & D nurses and put me in a wheelchair and brought me up to the floor to get settled. Seriously, what luck!

I was only in labor for about 12 hours and only pushed for 45 minutes before sweet Jack made his appearance into the world. I got an epidural and it worked beautifully. I honestly had the most lovely labor experience, other than the painful pushing part of course. However, 45 minutes of pushing is MUCH better than the 3 hours I pushed with my daughter. I was on top of the world when Jack was born. He was perfect at 8 pounds and 3 ounces, 22 inches long. He nursed perfectly right off the bat. We had beautiful newborn photos taken in the hospital by a friend who did a fabulous job. My daughter was in NICU when she was born and did not get newborn photos, which was something I had regretted terribly. We were getting those photos no matter what this time. Rowan even cooperated (with only a small amount of bribery) and got photos taken with her new baby brother. In the months leading up to Jack’s birth, Rowan had insisted that I would have a baby girl and called the baby Lucy. However, after he was born she was so good and even seemed happy. Seriously, I was over the moon and felt like the luckiest lady alive!

I had Jack on a Saturday  morning and we went home on Monday afternoon. Everything was perfect. He ate well, he slept well, he was an easy/happy baby. On Tuesday, the day after we came home from the hospital, I told my mom and husband (as I cried like a hormonal idiot) that I was so happy and could not believe I was so lucky! I felt like I had the most incredible life and family. I had been wary about adding another baby and after Jack was born it was so clear that having a second child was the right move.

I was so blind to the true hardships in life and without warning, my life changed in an instant. Did I even blink? Had I been dreaming all along? What happened?

Tuesday evening, late, Jack started crying. His crying intensified and he became inconsolable. I was so calm and patient and didn’t feel the least bit worried. I rocked him and loved him and knew he would feel better soon. We had our routine follow-up with his pediatrician on Wednesday. Jack had still not stopped crying by that time. No exaggeration, Jack cried for 15 hours straight. He cried the entire time at the pediatrician’s office and I expressed my concern. Probably gas or reflux or colic. We went home and the crying did not stop until about 8pm that evening. Jack had still been eating some throughout all the crying, but then he stopped nursing. I pumped and tried the bottle. Gradually throughout the night he basically just stopped eating, but he eventually stopped crying as well. As the crying stopped, something new started. I cannot explain it, although I have told the story to more doctors than I can count. I have retold this story so many times that it is painful to do again, but I know I need to get it out one final time.

Jack did not look quite right after the crying stopped. Keep in mind, he was barely 5 days old at this time so it was hard to say if he was just brand new or if he was acting strange. Babies are strange; they have strange movements. But something was neurologically not right and I knew it. He did not look like he was seizing (not in the sense that I thought a seizure looked like at that time at least), but something told me he was having little seizures. He was slightly shaking, jittery as they called it in the hospital, and then he would startle and throw his left arm out and turn his head to the left simultaneously. There is no way to explain this act, you just had to see it. I tried everything to see if I was imaging it or if something wasn’t right. My mom helped me give him a little sponge bath. He started seeming rigid. I was done. I called the pediatrician and we went back in on Wednesday morning. Jack was 5 days old.

Immediately, our pediatrician sent us to the local hospital. She wanted Jack to be admitted and see the neurologist. There is only one pediatric neurologist in our town. WTF?! We finally got to the peds floor after 30 minutes of registration, which I now cannot believe even happened…for fuck’s sake my newborn was seizing in my arms and no one felt a sense of urgency??! Yes, his shaking/startling was still going on this entire time. The first nurse who saw Jack immediately knew something was wrong and started getting other nurses in the room. She was a freaking rock star and I love her for the care she provided my son. It was obvious that something serious was wrong with Jack. Before I knew it there were 6 or 7 nurses in the room, all crowded around Jack trying to help him and my husband and I faded into the background as they worked. I have never been so scared in my life. It was soon decided that Jack needed to be sent to Children’s Healthcare of Atlanta, the best pediatric specialists in our state. I was terrified because this confirmed that something bad was happening to our newborn son.

Everyone in the hospital room kept calling it “seizure activity”. What the hell does that mean? Is he or is he not having a seizure?! I was borderline hysterical and we were told that only person could ride in the ambulance so my mom came and picked me up so we could meet my husband and son at CHOA. I’m sure it seems weird that I wasn’t the one to stay with my son, but I couldn’t even function. I would have been no good to anyone. My husband was much more composed, though obviously terrified, and he agreed it was best for him to stay and ride in the ambulance. What happened next only added to the nightmare we were already living.

Jack could not be stabilized, meaning they could not stop the seizure activity which was only getting worse. The CHOA doctors wanted him on the helicopter instead. It took 4 long hours to get Jack stable, intubated, and on the helicopter to Atlanta. My poor husband was left in the dust. There was no room on the helicopter for him. Luckily, the ambulance from CHOA had also arrived at the hospital and my husband rode to Atlanta in it. I had taken the car keys so he was going to be stranded otherwise. Meanwhile, my mom, my daughter, my in-laws, and myself waited in the PICU waiting room for Jack and Cliff to arrive. I would have sworn we waited for 12 hours, but it was more like 5 or 6. Yes, Jack was going to be taken straight to the Pediatric Intensive Care Unit because he had been given a paralytic, intubated, and pumped full of phenobarbital and ativan.

I don’t have a picture of the first time we saw Jack in the PICU because it would not have been appropriate, but this photo shows Jack on his second day in PICU. He was extubated and breathing on his own, but also under the bilirubin lights and hooked up to his first of many EEGs. Look at him. He is a healthy weight and does not look like a sick baby. Honestly, I have grown tired and weary of having people telling me that Jack doesn’t “look sick”… welcome to epilepsy, people!

There are many more chapters to Jack’s story, but I will end the first one here because the story is an emotional roller coaster and I can only take so many ups and downs in one sitting (as I am sure you will agree because reading this, just like living it, will make you dizzy and nauseous).

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It’s been one year…

jack mnt4p

We survived one full year, all of us. I haven’t posted about our journey the way I would have liked to, but I feel ready to share some about Jack’s first year of life.

One year ago today, I was getting ready to have baby Jack. I assumed the delivery would go smoothly and was already seeing past that part and on to my life as a mother of two. I was so excited to nurse Jack and spend lots of time snuggling with both of my babies before returning to work. I always assumed I would go back to work. I loved my job at the humane society and in many ways my entire adult identity was been based around the humane society. I already saw our lives with me back at work. I was completely comfortable and confident in my life.

That life seems so far away that it is hard to believe it was actually mine.

My life today consists of therapies, special diets and medicine, g-tubes, neurology appointments, genetics appointments, lots of blood draws, ER visits, service dogs, hospitals…you get the idea. I wouldn’t change it for the world and I know how lucky I am because Jack is doing remarkably well considering everything he has been through. But it is overwhleming and all-consuming and sometimes I just have to cry; cry for what was lost, cry for the trauma we all suffered, and cry with overwhelming gratitude that Jack is here.

My first blog post describes our time in the PICU when Jack was a newborn so I will skip that part. After that initial hospitalization, we were told that had an HIE (Hypoxic Ischemic Encephalopathy). The neurologist who delivered this news was noticeably upset and told us that Jack would likely have CP. We were discharged and we immediately started early intervention to try and compensate for what had been damaged in Jack’s brain. We swallowed this diagnosis and faced it head on. But, this was misdiagnosis we soon found out.  After three hospitalizations for breakthrough seizures, Jack was admitted in status epilepticus; he had been in a “seizure state” for over an hour. We were admitted to PICU and Jack had a terrible postictal phase, which is the time after a seizure when the person is recovering so to speak. Well Jack was not recovering very well and he was having horrible muscle contractions and couldn’t or wouldn’t make any sort of eye contact. My heart was beating so fast and I was nauseous. I swear if you could throw up your heart then I would have done it in that moment.

Once Jack was stable and moved to the neuro floor, he started having a pretty rare form of seizure known as a gelastic seizure. Let me just say that Jack was only 10 weeks old so he was JUST starting to smile. He did not laugh. Interesting fact: gelastic seizures are laughing seizures and not the fun kind of laughing. It was horrible. Jack could not control himself. He was laughing hysterically and his body was jerking around. This prompted the need for Jack to have a MRS, which is just a fancy MRI and I hate it and I am not getting into anything about this stupid test. One more interesting fact, gelastic seizures are most commonly associated with a certain type of brain tumor. So I am thinking, “brain tumor, okay not so bad and at least it would be an answer and something we could try to fix”. That’s the world I was living in; the world where a brain tumor is a decent option.

I will never forget setting a meeting time to discuss Jack’s results. I was almost excited because I thought maybe we would have an answer. There were three doctors in the room, along with my mom, my mother-in-law, myself, and my husband. They brought in a big computer screen to show us the results, but were having technical difficulties. I was searching the face of my favorite neurologist, but she was looking at the floor. Everyone seemed nervous, maybe even sad. FUCK! Just tell me.

We were told that Jack had Mitochondrial Disease and in no uncertain terms that he would not live very long. My husband asked, “are you sure?” and the doctor just looked down and said, “I’m sorry”. We lived for two and a half months believing that our little baby was going to die…soon. I now lived in a world where babies die. I lost my innocence in ways that many people won’t understand and I had to adapt quickly to learn how to survive in this world. I did the most logical thing I could think of and started asking BIG questions and talking about what I wanted for my son. They sent in Palliative Care and my husband and I discussed what we wanted for our son as he died. Can you imagine?

There is a lot more to this story and our journey, but I’m exhausted and I imagine you are as well. If you know Jack, then you know that he does not have Mitochondrial Disease. Genetic testing revealed that Jack has a rare form of genetic and metabolic epilepsy known as Pyridoxine Dependent Epilepsy. A correct diagnosis can do wonders. I want to share something special in honor of Jack’s first birthday. Welcome to Holland sums up our first year with Jack and I am so glad we landed in Holland! ❤

Happy First Birthday, Buddy!

welcome to holland