The Unexpected Diagnosis

*There are decisions made in this story that may be controversial to some readers. I am not asking for anyone's approval of the decisions that we have made during this difficult time. I am simply telling my story. 

There are some readers that keep up with my blog posts (thank you so much, by the way!) and have noticed that I have mentioned a medical condition that has changed our lives. It has taken me a while to process everything and put my thoughts into words, but here is the story.

We discovered our surprise pregnancy in late December 2021. We were shocked but as the time progressed, we began to embrace this new adventure in our lives. The pregnancy was typical with nausea and fatigue (minus one bleeding scare). By the 20-week mark, we were rocking and rolling with this pregnancy and making plans around the home to accommodate and welcome our newest addition.

I am considered a geriatric maternity patient so my regular OB refers all of her old patients to the high-risk office for their 20-week ultrasound in order to detect any subtle abnormalities in the baby that may be age-related. Due to a slight scheduling conflict, my 20-week appointment was pushed to the 21-week mark (this detail is important later). With the residual Covid restrictions in place, and the fact that we paid and participated in a private gender-reveal ultrasound, I didn't see the need to bring the hubby along to the appointment. This was supposed to be a regular check-up. 

The ultrasound was going well as the tech described all of the baby parts and how she was developing. After the baby measurements were made, my anatomical features were evaluated. I'm not an expert on sonography and really didn't notice the differences that the tech found blaringly obvious. Kudos to the tech as she maintained her composure to prevent from alarming me and quietly exited the room to notify the physician of her findings. She was a true professional.  

The high-risk OB entered the room and began discussing the unique findings with the tech. I could tell by their tone that something was wrong. They discussed a "window" in the uterus. This was a new term for me, and I was a bit confused. The OB excused herself to bring in a more senior staff member for consultation. An older gentlemen entered the room and the three of them continued their conversation of thinning uterine wall and "windows". He confirmed the diagnosis and stated that he would leave the room so that we may discuss our options. 

The OB seemed a bit shaken. This was obviously not something for which she had a lot of experience. She explained that my uterus had a section that was very thin and therefore called a window (by the way that it appears on ultrasound). This was believed to be secondary to how I had healed following my last C-section. She explained that this thinning would only get worse as the baby grew and put me at a high risk of uterine rupture. Uterine rupture at 21 weeks was considered not survivable for the baby and she suggested possible termination to prevent the damage that a uterine rupture would cause to my health. I declined. 

I am going to pause a moment from the story to explain, in layman's terms, what this meant:

    - Think of a woman's uterus like a balloon. Just as a balloon holds air, the uterus holds amniotic fluid and the baby. When you blow air into a balloon, the sides of the balloon stretch to accommodate the space needed for the forced air. As the baby grows, the uterus stretches to accommodate that growth which is why a woman in late pregnancy looks like she has swallowed a basketball. 

    - Now, can you think of a time when you had a defective balloon where the rubber wasn't uniformly shaped? In this type of defective balloon, there is a section of rubber that is thinner than the rest. If you fail to notice the defect or decide to blow up the balloon anyway, the stress placed on the outer walls of the balloon by the force of air causes the balloon to pop. Like that faulty balloon, my uterus is defective. There is a section of very thin wall that when stretched, has the possibility to rupture (or pop). As you can imagine, a ruptured uterus is not an ideal situation for either mother or baby. 

Back to the story:

It had taken me a bit of time to mentally prepare myself to embrace this surprise addition to our family and now, just as we were starting to purchase baby items, I am being told that this baby may not survive. Talk about a roller coaster of emotions!

Since I declined termination of the pregnancy, the other recommendation was close observation. A follow-up ultrasound was scheduled for two weeks later with discussion of hospital admission at 24 weeks that extended until delivery. She informed me that this baby was going to be premature, but just exactly how premature was yet to be seen. Meanwhile, I was given the following instructions and restrictions:

     - No lifting. The muscles used to lift an item could put pressure on my lower abdomen and increase the chance of rupture. 

     - No abdominal trauma. Any outside pressure on the abdomen could squeeze my uterus (my balloon) and increase the risk of rupture. Now, this sounds logical but when put into practice, the idea of avoiding all trauma when most trauma situations are unintentional, was a little nerve-wracking. 

     - Bedrest was not necessary but no extended walking or overdoing it. I mentioned that I had been hiking at Red River Gorge just a few days prior to this appointment and her face showed a sign of panic. How was I to know that this defect was living inside of me? I was simply living my life until they delivered the news that caused things to start crashing down around my feet. 

    - If I felt contractions or the beginning of labor, I was to return to the hospital immediately. They then asked, and regretfully discovered, that I live over an hour away from the hospital. 

    - If I felt sharp or intense abdominal pain, which is the main symptom of uterine rupture, I was to call an ambulance and/or find my way to the closest hospital that could airlift me to their hospital. The primary goal at this point would be immediate surgery to stop the bleeding. 

I left the office and proceeded down the hallway to my next appointment, my regular OB's office, as the news was being discussed between these medical professionals over the phone. I sat in a waiting room full of happily expectant mothers of all stages of pregnancy while the words "premature", "rupture", "mortality risk", "stop the bleeding" and "just monitor" were floating around my brain. By the time it was my turn to be seen by the nurse, my mind was reeling. Unfortunately, the information from my visit wasn't available in the computer and this poor, unsuspecting nurse had to deal with my ashen face as I choked back sobs and a few escaped tears flowed down my cheeks. She was sympathetic but a bit helpless as I explained the news. Understandably, she rushed out of the office as soon as she could get away. My OB entered the room and gave the following instructions and comments:

      - She re-offered the option for termination due to the seriousness of this medical condition. Again, I declined. 

       - She scheduled a follow-up appointment in two weeks after the ultrasound appointment already scheduled with the other office.

      - She suggested that I conduct a meeting with family and friends in order to "circle the wagons" and gather all of the support that we could for the upcoming weeks.

       - She told me to make plans for an extended hospital stay as she would like to admit me to the hospital between 22 and 24 weeks. Hold up! I was already 21 weeks, was I to be admitted next week or wait two weeks for the follow up appointment? She clarified that we would wait until the next appointment but to expect admission soon afterwards. 

       - She reiterated the importance and seriousness of returning to the hospital with any signs or symptoms of labor or abdominal pain. 

       - She mentioned that "one swift kick from the baby" could be all that it would take to cause a rupture, so I needed to be very aware of any change in symptoms. 

I left the office in a daze. My appointments took a lot longer than expected and the hubby had already messaged me with concern. I wanted to wait until I got home to discuss this but when I called him, it all came flooding out. Poor hubby! I have no idea how he managed to maintain his composure because I had learned of this news gradually over a couple of hours and yet he was experiencing it in a flood of words over the phone. He instructed me to "just come home" and that we would discuss it in more detail. 

We spent the remainder of the day discussing the options and implications between ourselves, explaining the situation to the kids and breaking the news to family and friends. Reliving this explanation over and over was exhausting, especially when well-meaning people had so many questions for which I had absolutely no answers. 

The hubby requested his own restrictions for this situation. While I was offended and irritated by having my freedoms being stripped from me, I understood his reasoning. Here they were:

      - No driving. We didn't know when I may experience symptoms that could render me incapable of operating a vehicle. This would not only place me but also the kids in unnecessary danger. I retired my keys. 

      - Have a babysitter at all times. This babysitter (my term for it) was an adult that could drive. We live very rurally and waiting on an ambulance to find our house could waste precious time, depending on the severity of any symptoms. It was explained repeatedly and adamantly by the doctors that time would be a significant factor in survival, should a rupture occur. So, we scheduled babysitting duties, not for the kids, but for me. 

      - End the school year. This news was changing a lot of things for us and trying to pretend that we were going to maintain our current schedule was simply unrealistic. While I didn't completely cancel school, I did make significant modifications. 

      - Do not buy or prepare anything in the house for the baby. This idea was one that I completely supported. I knew that if we came home from the hospital empty handed that I wouldn't have the mental or emotional strength to remove unneeded items. I couldn't expect to place that burden solely upon the hubby. We may have to make a mad dash to obtain the absolute necessities if things go well, but that responsibility will be more easily tackled with joy.  

21 Weeks

We all handled this news in our own way:

   - The hubby - He buried himself into work for the business and around the property. He had one week left of scheduled recovery time from his job at the hospital (due to his recent hernia surgery) and decided to make every minute at home a productive one. He became a blur as he zipped back and forth between projects. We both knew that an extended hospital stay for me would require a huge burden to be placed upon his shoulders and he refused to waste any precious moment to "get all the things done". 

    - The kids - The kids were amazing. Even though I was home, I had to transfer some of my normal chores to them. I postponed our regular school activities and cancelled outside events as I focused on teaching them some home economic skills to help when I was not around. I taught the oldest how to do laundry and he was forced to expand his cooking knowledge as he took over a lot of the family meal preparation. My other son did a lot of work with the animals but now felt fully responsible for all of it because I couldn't physically help him. He also volunteered to take over all gardening responsibilities so that I wouldn't have to worry about it. We added chores to both of the girls by teaching them how to properly fold and put up laundry, how to clean a bathroom and sweep and mop the floors. This wasn't received as graciously as the boy's new chores but it could have gone worse. 

Besides jumping into their new roles of responsibility, each kid also managed their emotions in different ways. My oldest took it upon himself to be a replacement parent and to oversee everything so that I could rest. He constantly reminded me to sit down and tried to do everything by himself. This led to arguments from the other kids who didn't appreciate being bossed around by their big brother and immense frustration from my oldest as his attempt to flawlessly fix everything at home was failing. I had repeated conversations to remind him that, while we are asking more of him right now, he is still our child and isn't responsible for everything. I'm not sure that he believed me. 

My other son became sullen and clingy. I couldn't leave his sight without him wondering where I was going and why. I know that this was out of love and concern, so I tried to discuss his feelings with him, but he insisted that he was fine. He refused to open up. Instead, he threw himself into caring for me, caring for all of the animals and the garden. He wasn't sleeping well and looked exhausted. I felt horrible that he was going through all of this stress at such a young age and I was at a loss of how to help him. 

My oldest daughter became very attached to me. Instead of becoming withdrawn in her thoughts, she never stopped talking to me. I wanted to be understanding but the nonstop chatter of everything from her current thoughts to a story of temporarily losing a random toy several years ago was enough to make anyone bonkers. She refused to sleep in her own bed and slept on the other side of a line of pillows in my bed to prevent any kicking during her sleep. She tried to be as close to me as possible. She turned into my loud, talking shadow. 

My youngest daughter was a bit more oblivious to the seriousness of the situation but would occasionally ask "Is the baby still in there?" or "Are you going to pop today?". These questions were usually followed by a status update on her loose tooth. I felt comforted in the knowledge that we hadn't ruined her life as she was still living it on her terms. 

    - Me - After the initial shock wore off, my first response was to find a way to regain control. I decided to make plans. I started with the immediate two weeks by cancelling, rescheduling or altering all of the plans on the schedule for that time period.

When that was done, I began making plans for the possible upcoming scenarios, starting from the worst to best. I don't know if it was my years working in critical care or simply my personality, but I felt a need to address the worst possible outcomes first. I knew that the hubby was not ready to address these issues, but I couldn't get past the nagging feeling of doom until I faced it head-on. 

First, I started making plans for burial (for myself and the baby). There are only a few items that are important to me but I knew that it could be a time sensitive scenario, so I decided to make a few of these items known to others. I divided the information among various people by their specific skills, knowledge or how it may affect them. My hope was that by dividing this information that I wouldn't place too much of a burden on one individual. Then, I placed the same information into a "Just In Case" folder for reference if needed. My method was haphazard and quick. I had so many other things to accomplish before my hospital jail-sentence, so this was not an ideal method of addressing this difficult issue. It sufficed for the time-being. While facing my own mortality was emotionally exhausting, completing this part allowed me to refocus my thoughts onto more positive outcomes. 

Next, I began addressing other issues that would require adjustments during my absence. While my financial contribution to the household had decreased over the years to accommodate our decision to homeschool, I did fulfill certain roles within the home that would need to be replaced. 

    - Homeschooling -The hubby and I discuss our educational goals and methods for each child but the details of specific curriculum, schedules, etc., he deferred to my judgement since I spent the majority of the time doing the actual teaching. Besides cancelling the immediate two weeks of activities due to recent events, I had to change the whole homeschooling plan for the remainder of the year. We had limited time together and so many things to plan that to continue our previously scheduled plans wasn't an option. I had to consolidate. Homeschooling for the girls requires more "over the shoulder" time to instruct, assist and evaluate. I agreed that this portion had to be placed on the backburner for now. We stopped all formal school for them and focused on life skills and alternative activities. The boys were more independent learners. As I have mentioned before, our curriculum is quite literature-heavy, and we were in the middle of several books. I removed any joint activities with the girls, stopped any extra subjects (logic, veterinary medicine, etc.) and then made a list of the remaining independent reading/writing activities that could be completed by the boys for the remainder of the school year - even if I wasn't available to oversee it. I divided the activities over time periods and spaced them out to enable them to have time between readings to absorb the information. I removed anything that would require extensive grading as I may not be available, and it would be too much extra work to ask of others. I changed the rest of the school-year plans to the "bare bones". I was forced to cancel most outside field trips and activities since I couldn't drive them, and some were all-day events where I would be on my feet the entire time. 

   - Scheduling - With hospital work and homeschooling, we have never had what most would call a typical Monday-Friday schedule. This was intentional and we love this lifestyle choice that allows a Tuesday to contain as much fun and excitement as a Saturday. The variety in our schedules does require more intentional work to maintain and organize than if every week looked the same. Since I was home more and planned the homeschooling activities, I also took on the role as the family scheduler. I made the necessary homeschooling schedule changes (as mentioned above). I began scheduling my own babysitters to accommodate times when the hubby couldn't be home. Without being able to drive, this also required transportation adjustments for myself and the kids. The kids had scheduled soccer and horse lessons that I simply didn't have the heart to cancel. I had already cancelled so much and rocked their world, the least that I could do was to try to let them finish out their seasons and scheduled lessons. 

   - Homemaker responsibilities - I spend more time at home than the hubby so I had taken over the roles of homemaker. There were now so many things that I could no longer do. The kids helped to shoulder some of the home responsibilities, but I did feel guilty putting so much work on the shoulders of people so young.  

   - Errand-Runner and Grocery-Getter - While these activities do not seem like much, I had been changing our family's dietary and lifestyle habits over the years. The result is that we purchase our soap from an artisanal soap maker in Indiana, our deodorant from a small business owner in Northern Kentucky, our coffee from a private roaster in Tennessee, our milk from a herd share directly from a farm, our butter from a Mennonite store and our honey from a friend. I purchase some items like nuts, raisins, seasoning herbs, flour, sugar, etc., in bulk from companies like Azure and Mountain Rose Herbs and repackage them as needed. A lot of our vegetables and fruit that we didn't grow, I purchase in large quantities from local farms and preserve them by canning, freezing or dehydrating them for later use. I have started replacing a lot of typically-purchased items with ones created at home in an effort to decrease the amount of preservatives, hydrogenated oils, etc. in our diet. Examples include making bread and baked goods rather than purchasing them from a store, homemade mayonnaise (it's much easier than you would think), substituting flavored vinegars and oils for salad dressings, and making our own trail mixes with dehydrated fruit and nuts. These gradual changes have proven themselves worthwhile by the significant improvement in our overall health while allowing us to consume high quality products on a modest budget.  

I have seen the multitude of benefits from these dietary and lifestyle changes so the mild inconveniences of logistical planning pale in comparison to the benefits of catching up with a friend as we purchase local honey that helps to reduce our allergy symptoms. Despite my acceptance of these changes and some of the additional work that it requires, I couldn't expect those willing to step in for me to go to such lengths, in addition to the sacrifices of time and energy that they were already making for us. So, I made it a mission to stock up as much as I could before my hospital incarceration date. I blew up our grocery budget for the month and worked to fill our home with a ton of food items and supplies in hopes that they wouldn't run out while I was away. This was an unrealistic goal, but it gave me a positive purpose to focus on instead of worrying about the big things.

22 Weeks

The beginning of the 22-week mark led to an unexpected phone call. The OB specialist had been researching my case and discovered that there were surgeons at Cincinnati Children's Hospital who have performed a surgery to fix the uterus while keeping the baby safe inside the womb. She suggested that I meet with them to discuss this option. It wasn't a common procedure, but they had performed it at least once. I agreed to the consult. 

The consult was time-sensitive as we also had to figure out admission dates, location, etc., if surgery wasn't an option. After many phone calls, we had a day of appointments and testing scheduled for Friday. The hubby took off of work and accompanied me to the hospital for a day of testing and meeting with the maternal-fetal-medical team and neonatal specialist. 

Long story short, they determined that pre-emptive surgery was too risky. They suggested "expectant waiting" with admission at the time we felt was worth the risk and a scheduled C-section at 34 weeks if we were lucky enough to make it that far. They provided additional suggestions and restrictions that included avoiding dehydration as this could increase the risk of contractions which in turn would increase the risk of rupture. They signed off of my case. 

23 Weeks

After extensive discussions with the specialists at Cincinnati Children's Hospital, the hubby and I made some decisions. We concluded that our only option at this point was to wait until the ticking time bomb in my belly exploded. We had no idea when this might occur, but we had renewed hope that there was a possibility that our baby could actually survive this ordeal. Evaluating the long-term effects and options appeared useless as the time frame was so variable. 

I was in what was called the "peri-viable period". It was true that some babies born at 23 weeks have survived, but the chances were low. According to the neonatologist, the chance of survival increased to ~50% at 24 weeks gestation. I have witnessed invasive and barbaric methods that we use in the medical field to save a life. I just couldn't justify putting our baby through so much pain with less than a 50% chance of survival. I wanted to wait until 24 weeks to be admitted to the hospital. The hubby was very supportive of my wishes. By making this decision, we knew that if the uterus was to rupture in the next week that we wouldn't make it to the hospital in time to attempt resuscitation. It was a difficult decision. 

I had appointments with both the high risk OB and my regular OB the following Monday. The high-risk OB agreed with our plan but because their hospital was not equipped to handle premature infants less than 28 weeks, I had to be transferred to another facility and physician group. I was scheduled for admission to the neighboring hospital for the following Tuesday (officially 24 weeks). 

I had one week left of freedom. I rode home with so many plans. 

Again, my plans were derailed as I caught a stomach bug from my youngest child. This stomach bug had visited our house the week before but besides one puking kid, the rest skated by with only some mild fevers and lethargy (another reason that I fell in love with our change in dietary and lifestyle habits!). However, my weakened state of pregnancy resulted in a longer duration and worse symptoms. 

I had just been instructed to avoid dehydration as this could cause increased uterine contractions and rupture. I also felt pressure to limit any vomiting because of the risk of increased abdominal stress could lead to uterine rupture. I spent the next five days running a fever, trying to drink water to avoid dehydration and fighting every urge to vomit. I gradually got better but I had spent the majority of my last week of freedom sick, in bed, or on the bathroom floor. Mentally, I was feeling pretty low. 

When I felt a bit better, I knew that I had to make plans for the kids during my hospital incarceration. The hubby had to return to work as we needed an income, so the kids would need someone to watch them. I worked with the grandparents, and we set up a schedule where the kids would be bounced from their houses and our home with grandmothers staying over some nights. We cancelled some soccer and horse lessons as they simply could not be worked out. 

24 Weeks

With about a 50% survival rate, I felt that admission at this time made sense. Plus, with my recent stomach bug, the hubby felt great relief to have me situated safely in a hospital room rather than at home and possibly requiring immediate transportation to the closest emergency facility. 

My hospital room is just steps from the operating room in case I need emergency surgery. It's not fun and some days are harder than others, but I'm waiting. It's difficult to be patient when you want the baby to remain inside as long as possible and yet you feel like a prisoner. I still have no real symptoms but repeat testing shows the "impressive" uterine window and various staff tiptoe around me waiting for the time when they need to jump into action. 

I have essentially turned into a blob. In my mind's eye, I picture a stick of dynamite, tied to a cheap kitchen timer, all encased in Jell-o like some of the pranks used in the comedy show, The Office:  

Many people have offered assistance, but I have nothing to tell them as far as my needs. I don't need anything. I'm simply here, being a blob, until the day occurs that my uterine bomb decides to explode. 

I'm more concerned about the heavy burdens placed on those around me. The kids have been exposed to the emotional aspect of serious health issues beyond their years. They are separated from their mother. They are being shuffled around between family and trying to show a brave face among all of this stress and confusion. The hubby is working, visiting me, transporting kids for their last weeks of soccer season, overseeing animals, working on orders for the business, maintaining the house and the list continues. He appears mentally and physically exhausted and it's only been a short time. Extended family members are sacrificing their time and energy to pick up the slack for me during my absence. It has placed undue burdens upon them and is sure to become old and tiresome. 

At some point, we may look back on this experience as one that made us stronger and emphasized the importance of family. For now, we are simply surviving. 

25 Weeks

I still feel like a blob, but we made it another week! At this stage, each day without issues significantly increases our little girl's chances of survival. 

I have observed the rhythm of the staff and now make daily goals of activities to achieve with my time. I have an abundance of books, games and TV shows but I wanted to also take advantage of some of this time to be productive. I have been writing, paying bills, reviewing our homeschooling records to better prepare for next year, working on some education classes, updating websites, clearing photos off of my phone, etc. Basically, I'm tackling the list of to-do items that usually gets pushed to the bottom during normal life. It's more screen time that I am used to tolerating and I miss getting a tan in the warm sunshine, but it helps a blob to feel productive. 

I've had several visitors which is surprising given how boring it is here, the hassle of driving downtown, the price of gas and the maze of hallways that must be navigated to find my little hole in this hospital. They have been a kind and welcome distraction. 

I talk with and face-time the children often. It's not nearly the same but helps to keep me a little connected. I was able to watch the hubby fuss as he worked to clear the clogged kitchen sink, instruct and provide limited comfort to my children when they discovered a sick rabbit (who eventually died) and watch specks of green and blue uniforms on a soccer field. 

I will admit that some days are easier than others. Becoming a spectator to what used to be my life is difficult. I keep reminding myself that this is a temporary situation and that boring is the ideal environment as this little one grows strong enough to face the struggles of the outside world.   

26 Weeks

We have made it to 26 weeks! 

I have had multiple discussions with a variety of physicians since my diagnosis. They all agree that this is not a common situation and that the clinical pathway going forward is uncertain. However, that is all that they tend to agree upon. I have had so many conflicting opinions regarding our options and plan of care that it is almost comical. Almost. The opinions vary from as optimistic as making it to 34 weeks to expressions of surprise that I carried the pregnancy this far. I can't blame them. One physician mentioned that after extensive research, she found three case-studies of conditions similar to mine. Apparently, complications from repeat C-sections are becoming more common but yet still novel enough that the outcomes and best treatment plans are very unclear.   

We continue to weigh our options. The decisions available to us change regularly as we obtain more information from continued testing and pass certain milestones for infant survival. 

Now, we continue to wait...and pray.