As I was nearing the end of my pregnancy with my second child, I had just visited with my doctor and decided that it would be best to go on bed rest a week before my induction date of December 8th, 2014. It was towards the end of November and I was ready to have this baby. I had struggled with higher blood pressures and I was extremely fatigued. Naturally, I attributed it to the pregnancy and didn’t think otherwise.
Before GBS
It was November 29th, 2014 when I started to feel that my 4th and 5th digits on both feet started to go numb. I talked to a couple nurse friends and they said to just take a warm bath, the baby could be sitting on a nerve. The next day, which was Sunday, my hands started going numb. At church I went and asked our parish nurse about what she thought was going on. She said she wasn’t sure but sometimes during pregnancy it is not uncommon for women to get temporary carpal tunnel in their hands. As for my toes, she also figured the baby was sitting on a nerve.
The first day of my maternity leave from work, as a middle school art teacher, my husband and I started getting the house ready for extra house guests for when the baby would arrive. It was now December 1st and I noticed that as the day went on, it got harder and harder to go up the stairs. As I was going back down to get something, I could no longer feel the bottom of my feet and lost my footing. I fell, only about two stairs, but it was the fact that I couldn’t feel my feet that scared me. I called the doctor’s office, explained what happened, and they agreed with the parish nurse. Again, I was told to take a warm bath, so I did but the symptoms remained.
The next day, I woke up to go to the bathroom. My legs were extremely weak and my balance was horrible. I hobbled into the bathroom and got a warm bath going. I was able to get in just fine but when I tried to get out, I was unable to stand. I yelled for my husband to come in and help me. It took all his might to try to get me up – I was dead weight. When he finally got me out of the bathtub, I made my way into the bedroom to call the clinic again. They said it was finally time to get to the ER. As I was reaching down to get dressed I fell again. This time I fell apart emotionally. What was going on with me? How could the baby be causing all of this?
As we entered the ER at St. Francis hospital in Grand Island, NE, me obviously in a wheelchair, they took me into a room separate from the normal waiting room. They told me that someone was going to come and wheel me up to Labor and Delivery and we would get things figured out there. When they took me up, they stuck me in a triage room, on a very uncomfortable hospital bed, and I spent most of the day in there waiting on my OBGYN doctor to get there. As I laid there, I noticed that the numbness was moving up my forearms and it was harder to use my fingers. My doctor finally showed up and decided to move me into a delivery room, which was bigger and more accommodating for all of the family that had come to support me.
December 3rd was spent being monitored and poked for blood tests. Getting up to go to the bathroom was getting harder and harder. At first my husband was able to help me get there, but then it started taking two people. Finally, a neurologist was called into assess me. He tested reflexes, asked what I could feel and couldn’t feel, but he was puzzled. He hadn’t dealt with an extremely pregnant lady with these symptoms before. That night my OBGYN and the neurologist decided that it was time to induce, in case the baby was in fact sitting on a nerve. They started the medicine around midnight to get things moving.
I was told that this baby had to come naturally, no anesthesia, because if this was a nerve issue, they did not want to stick any needles in that might worsen the nerve situation. Late that morning, on December 4th, Harper Renée Amen came into the world as perfect as can be. I, however, was worsening. We now knew that the baby wasn’t the problem.
Baby Harper
Over the next few days, I lost all ability to walk, stand, and my arms became very weak. Instead of being assisted to the bathroom, I was now being stood and pivoted onto a commode, with the help of two nurses and a gait belt. It was very difficult to get comfortable and I had to ask to be repositioned quite frequently, since I was unable to do much movement on my own.
I am not sure what day it was, they all started running together after Harper was born, but the neurologist came back in and told me that they wanted to do a spinal tap in order to diagnose me with an autoimmune “disorder” called Guillain-Barre Syndrome. The fluid results did not come back normal and it was quickly decided that I did have GBS and needed to be moved to ICU in order to monitor that the paralysis did not move toward my diaphragm. If that were to happen I would need to be put on a ventilator.
After being moved to ICU, a doctor specializing in physical medicine and rehabilitation came in and did a nerve conduction test. This meant that the doctor would use a machine that had a hand held device which would send electrical currents throughout my nerves, and the results would be able to tell if there was nerve damage or not. It felt like being electrocuted – over and over again. After it was all over the doctor concluded that I did have nerve damage and it was confirmed that I had Guillain-Barre Syndrome.
Guillain-Barre Syndrome occurs when the body’s immune system attacks the peripheral nervous system — literally shorting out the nerves that signal our legs to move, our eyes to close and sometimes our lungs to breathe. It eats away the myelin sheath that wraps around the nerves. The paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. I like to explain it like a string of Christmas lights, if one of the bulbs is removed, it shorts out the rest of the string. The same thing was happening to my nerves, if the myelin sheath was damaged, I was unable to use my limbs.
My husband, parents, brother-in-law and mother-in-law were now in charge of taking care of my children and house full-time. My husband had taken paternity leave and was able to use sick leave for the remainder of the time. My mother-in-law and my parents helped with the baby and our three year old. Sean, my husband, stayed with me throughout everything. The family made sure to bring my girls as much as possible.
The next week and a half were spent in ICU as things kept going downhill. The left side of my face began to droop. My family and friends started having a hard time understanding me. I didn’t have an appetite and was on a mechanical soft/liquid diet since it was hard to eat with my mouth drooping. My husband figured out that slushies were my best friend during this time. Lemonberry slushies from Sonic tasted fantastic and were easily spoon-fed to me. Otherwise my meals consisted of applesauce and pudding. I started losing a lot of weight, in addition to losing baby weight – about fifty pounds.
My facial droop
Eventually a Hoyer lift would have to be used in order to move me from my bed. I was paralyzed from the chest down and was numb to the touch, but any movement of my muscles caused excruciating pain. I was never comfortable and had to be repositioned often. I couldn’t even hold my brand new baby. We had to use a Boppy pillow in order for me to “hold” her.
The doctors decided to start me on a five day regiment of IVIG (Intravenous immunoglobulin) that would initially stop the progression of nerve damage and supplement the restoration of the myelin sheath. If this method would have failed, I would have had to go to Lincoln, NE for a different method called plasmapheresis. Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system – in my case GBS. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute. We did not want it to come to this in order to be close to family and of course the new baby.
During the administering of IVIG, I would get very uncomfortable, anxious, and started having hot flashes. My blood pressures were so high that a nurse would have to come in and give me medicine through my IV in order to bring it down. I hurt so bad, I couldn’t move, and was having such anxiety that my mind started getting the best of me and I just wanted it to end. However, it was apparent with therapy that I had hit my plateau when I started regaining some strength in my arms and hands.
On December 11th, I was able to prop up a bottle and feed Harper for the first time. Since the paralysis had stopped and improvements were being seen, the doctors began talking about moving me up to the intensive rehab unit in the hospital. However, with these improvements came more and more pain since the nerves were essentially “waking up”.
Feeding Harper
IRU would require three hours a day of rehab including speech therapy, occupational therapy, and physical therapy. I was pretty nervous about this step because it hurt so bad to move, let alone do therapy. It was December 15th when I arrived in IRU. All the nurses were so nice and I quickly became friends with them. Therapy would come in and work with me in bed and I got tired very easily. Simple movements would cause intense muscle pain. The rest of December is kind of a blur to me.
One night a few friends came in to spoil me. My coworker brought in a mini-Christmas tree and set it up with lights and everything, since we would obviously be spending the holidays in the hospital. A couple other friends hired a professional photographer to come in and do Harper’s newborn pictures. They dolled me up, doing my hair, makeup, and nails, and the photographer took pictures of me and Harper in the hospital bed.
For Christmas, the nursing staff went together and bought us an entire Christmas dinner from Hyvee. We were able to exchange gifts and try to enjoy Christmas the best we could. I was of course in a lot of pain from sitting up too long in the wheelchair and had to go back to my room early – missing out on the rest of opening gifts. I just couldn’t take it any longer and needed to sleep. By the end of December therapy had assessed that every muscle, that previously was dormant, now had a spark of life, but I was still extremely weak – especially in my legs.
Christmas 2014
January 9th, 2015 was the first time I sat on the side of the bed partially-assisted in over a month. My core was still very weak and it took a lot of concentration. It was such a strange feeling and of course pretty painful.
I also began lifting my legs!
After this huge step, my recovery started rapidly progressing. By the 14th I was standing using a machine called a “Sit to Stand” to start getting me used to being upright. It sent shooting pains down my back and legs, I was only able to stand for a couple minutes at first.
A week later the therapists were helping me stand by the side of the bed without a lift, still for a very short time each session we had.
Since things were getting a little easier each week, we got to start going on weekly outings. We went to the mall a couple times, to my favorite Thai restaurant, and out for coffee. Each time I went out I would get depressed, knowing that I would have to go back to the hospital – even though the staff was exceptional.
On our first outing
February rolled around and on the 9th I took my first steps, re-learning how to walk. This was done with three people. One in front, holding onto my knees (since they were extremely hyper-extensive), one beside me, holding onto my gait belt, and the third wheeling my wheelchair behind me in case I fell or needed to sit down. I couldn’t feel my legs or feet, so this also was a very strange feeling. I explain it like when you sit on your left for a really long time and try to get up and walk, most people call it a dead leg, this is exactly how it felt walking.
During this whole time of being in the hospital, my husband was making a transition in careers and got a job as a youth pastor in Hastings, NE, which is a half hour drive from Grand Island. Soon, he would have to return back to work, and things would get a little more complicated for me and my mom while taking care of the kids. On the 16th I was able to walk with a walker and became more and more independent in my room. By February 20th, I was ready to go home. The staff had put together a tunnel walk for me, with “Sirius” by The Alan Parsons Project (which is the song that the Nebraska Huskers play during their tunnel walk) playing in the background, with staff and friends lining the way to the entrance. My physical therapist and I made our way out the door with me using a walker and my family trailing behind us, as the crowd clapped and cheered me on. My 81 day stay in the hospital was now over and I was on my way to going home.
Tunnel Walk
Well, kind of… instead, me and my little family were on our way to moving to Kearney, NE for a while to live with my parents. This way I could have help taking care of the girls and would be able to have someone to take me to therapy when Sean had to work. It would be another month before we would begin talking about returning to our home in Grand Island, using no assistance and being able to take care of the kids by myself.
Since then, we welcomed another baby girl into the world in May of 2018, with no issues whatsoever. I still have issues with facial droop (especially when I am tired) and nerve pain in my legs and feet, but I am at least able to go back to a semi-normal kind of life. I don't have very much energy but I do my best to be the mom, wife, teacher, and Pastor's wife I can be, despite my residual symptoms.
Throughout everything my trust and faith in God, my family, friends, therapists, nurses, doctors, coworkers, and children kept me going. There were definitely tears, at least once a week, but I had hope that a lot of others do not have. I know God has big plans for me and for my family, so I could always have the courage to get through it.
