Lucky Socks

    It’s been an eventful 6 weeks since my last post. I started my dream job at Primary Children’s NICU and I truly feel so lucky to have the opportunity. The stakes feel as high as they come to be trusted to care for a family’s newborn. Most of my brain power these days is devoted to studying all there is to know at my new job. It’s going to take years to finish the education available for the unit and reach the highest level of care, but I like that there’s a built-in trajectory. There was a time when I was afraid NICU would be too painful and triggering for me, so I’m celebrating this victory.

    ICU level nursing is no joke. It’s been drinking from a firehose; mentally, emotionally, and physically exhausting. An experienced nurse who had been on the unit for 25 years said to “give yourself two years” to feel comfortable. I think the perfectionist in me is terrified (and excited?) about how much I have to learn.

    The benefits offered to me at this job truly have no downside. The coverage is about twice as good, for half the price. When agonizing over the idea of taking over our benefits, I realized it would drop our deductible by about 13K; it was clearly necessary. I had so much pressure sitting on my chest for days, just thinking about it. So much anxiety surrounds this obvious shift in roles. Even though I’ve been working full time for quite a while, I felt like I was “supplementing” the income while trying to run the household. Now I feel the pressure of maintaining hours for benefits and that is really scary. I’m excited that there are so many opportunities for me to grow within the company, but also torn knowing I would want to be home if I had a baby. I’ve put in too many years of infertility and loss. I think the stress comes from the perceived lack of flexibility in the future. Change is so uncomfortable. We have our hands full with our jobs (and Kevin just picked up a small second job), the kids, symphony, and literally everything else. I try to remember we can work out whatever comes. Unfortunately, this new insurance did cause our therapy costs to skyrocket, so Jack and I are both taking a break from counseling. Never a great thing to do at a stressful time. 

    When Kevin got his doctorate, I thought I wouldn’t ever “have” to work again if the kids needed me at home. Certainly not full time. But his career has been full of surprises and so has the economy. I don’t think many families can survive on one income anymore. I’m happy that I’m able to have a career; it’s the commitment that’s scary.

    It may be hard for some people to understand the reality of living with a condition like fibromyalgia. Chronic pain and fatigue is all too real and can truly be debilitating. It’s exhausting to mask it and carry on. Muscle through. The idea of taking on more is terrifying because you wonder, what if I literally can’t do it? Maybe I can most days, but if I push myself too far I will pay for it ten times over with a flare up. When I work several nights in a row, I usually have a flare up for a few days where the pain is more extreme and I have almost no energy. Like a very bad flu. Sometimes it’s even visible. The inflammation pops up in red splotches all over my feet and legs. My neurologist thinks it’s auto immune related and when I see the spots, it’s a red flag that I need to slow down and rest more. But those red flags always pop up when I work full time hours. I get more muscle spasms. I feel pain deep in my bones and shooting through all my nerves. It’s the main reason I’m afraid to stop my medications (which would be required if I were pregnant). I’m worried about how I would function with these full time hours I’ve committed to.

Fibromyalgia is usually invisible. But when these little red flags show up, I know a flare up is starting.

    I did officially get news that my doctor wanted to do a scope and D&C as the next step in trying to treat this antibiotic-resistant chronic endometritis. I was told I needed to start a hormonal treatment (the mini pill) for a few weeks to keep my lining thin and suppress my ovaries for the procedure. I started taking that prescription the same day. I was really nervous. I tried the mini pill in my early 20s for a couple months and was in absolute misery the entire time (I can’t take regular birth control due to the estrogen- because of my risks for blood clots). I was worried I would get nauseated and possibly have terrible migraines on these pills, which seemed like really bad timing with a new job.

    After hearing all the costs associated with this surgery it really hit me that, “wow this really is our last shot at this” because it’s just not financially sustainable. I immediately did, probably the most extreme thing, and signed a contract to work every Friday, Saturday, and Sunday night for 4 months (after orientation) because it comes with a small lump sum that could help pay for the surgery. I will have to take a break from one season of playing with the symphony and I already miss it so much. Music is so good for the soul. 

    In the meantime, we have tried to keep summer activities going as much as we can. We were able to attend an amazing family reunion (For my side! It’s been over a decade since I saw everyone!) It was so special to see lots of loved ones meet and interact with my kids.

    Aidia also took charge of updating her room. It’s been the same since it was her nursery and she was ready for a big girl room! We painted it purple (with glitter mixed in the paint, which I must say is amazing).

    I’m currently in the process of planning Jack’s 13th birthday party. Which reminds me again that we are entering a totally different phase of parenting- the teenage years. It really is a crazy idea to try and add a baby to the mix, but I feel that it would be so good for all of us and bring so much joy. I know Jack and Aidia would be so loving to a baby; they would appreciate a baby because they are so much older. But this can’t go on forever. I’ve spent my entire adult life trying to build a family and have babies. The painful triggers still pop up when you least expect it (see below- thanks government I was just trying to pay my loans). 

I honestly struggled to answer this question

    I started on the hormones as instructed. I immediately bloated up like a balloon while my mood simultaneously deflated. Within a couple of days none of my pants fit comfortably. I felt like I was either depressed, numb, or overwhelmed. I was having the kind of anxiety that comes with literal chest pain and palpitations. I do not do well on hormones, everything instantly felt like it was too much at once. My resting heart rate went up; I was fidgety and restless. I was crying all the time and my nerve pain was exponentially worse. I was getting up at 530am for work and usually didn’t make it home until 8-830 at night, totally fried. I worried about the kids all day because it’s summer and they just call constantly to ask “how much longer” until I get home. I get it- no one loves being babysat all day.

Quick sidebar- How can working parents avoid feelings of guilt/inadequacy when balancing work and family life during the summer? Any days off I have, I feel like I just have to recover. Is everyone with young kids just in survival mode all the time? How do you keep your house clean and fridge stocked and finish all your projects? How do you keep up with exercising? How do you reduce your kids’ screen time when you feel like you’re just fighting-for-your-life tired? Figuring out child care for while working day AND night shifts (while trying to tend to my kids’ emotional needs) in the SUMMER may be the most complex puzzle I’ve ever put together. When I’m finished with orientation it will be much better. I hope. Probably unrelated, but grey hair has started showing up in droves. 

Anyway. I was overstimulated with everything new at work and felt like my brain on the mini pill would just freeze when overloaded instead of pushing through. I could almost feel my eyes glazing over when I didn’t understand something being taught. At night I was desperate to rest but kept waking up in cold sweats. I always felt freezing and continually had vivid and violent nightmares. Kevin never slept well either because of my shaking/shivering/thrashing all night. I would get up and change, only to sweat through a second set of PJs. I’m not looking forward to menopause. Look, hormones are not something to mess around with.

I was definitely not at my normal baseline mentally to use healthy coping mechanisms to deal with all the changes at once. Most days I felt like curling up into a little ball and focusing on breathing in and out. Fortunately, I was confident that a fair amount of this struggle was hormone med-induced. The good news is, I was right. Once I stopped the mini pill I felt a little sunshine break through and I’m feeling much more myself. 

The night before surgery finally arrived. Kevin was in Salt Lake with Jack at a concert and I had settled Aidia in bed for the night. I was picking up around the house and prepping everything for the morning. I was ready to settle in and get some actual sleep before the big day. I went to grab something from the laundry room and casually pet Lumiere on the floor outside the door. I did a double take when I looked down at him. He was breathing fast. Really fast. He had been totally normal, happy, and playful all day, but I took one good look at him and knew something was seriously wrong. I scooped him up to put him in his carrier to take him to the animal ER. He didn’t fight me at all. He was like a limp noodle.

I no longer cared about getting any rest before surgery, I wanted to see him stabilized and not in pain. He just turned 6 this summer and I’ve had him since he fit in the palm of my hand. To see my big strong panther so weak was jarring. They took him right back in the ER because he was panting at that point. Things felt chaotic as they tried to figure out what was going on. His labs were decent, it wasn’t normal cat issues (like kidney stuff) but his temps were cold and he had low blood pressure. I was worried about that level of shock when the cause was still unknown. They couldn’t rule out pancreatitis, which is really painful, so I signed for him to go into ICU level care. He was getting oxygen and fluids and good pain meds. I just didn’t want him to be in pain, but I hated that he was back in the ER without me. The doctor came in and said she thought maybe he threw a clot or had some kind of vascular event. She said they needed to rule out if it went to his heart or if he needed to go home on blood thinners.

I sat in that little consult room and cried like a baby. He is so beloved. I was by myself, it was the middle of the night, fasting for my own surgery that was starting in a couple hours. They let me give him a little pet goodnight and I told him I would be back after my surgery was over. He was stable and just waiting for the heart specialist to check him out in the morning. I wish I had known that was goodbye. I would have taken longer with him. 

A few hours later, it was morning and it was pre-op time. I already inserted the cytotec to start dilating my cervix when I got a call that he took a turn for the worse. He still had a heartbeat, but he had stopped breathing. They intubated him and put him on a ventilator. The new theory was that he had an asymptomatic lymphoma that started affecting his central nervous system. I was praying that my kids could just hug him goodbye. But Jack was at summer camp, Aidia was with a sitter, and I was headed an hour in the opposite direction for surgery.

It wasn’t long before they called again and said he had died. It was such a shock to the system. Such a lack of closure. No one got to say goodbye, have a last day with him, or tell him he was a good boy. The kids would come home without a clue he was sick, and he would just be gone. We thought he had at least 10 more years. He never missed a checkup or preventative care. I cried all the way to surgery and through pre-op. Maybe I looked crazy to the staff but it’s like “sorry, my cat just died unexpectedly when I was on my way here.” At home after surgery, instead of trying to rest and recover, I had to tell the kids and hear the grief in their sobs. Unbearable. They kept asking if they could go say goodbye, but he had already been gone for hours.

There were some little silver linings looking back on this tragedy. The day before surgery I was at work, and something told me on my way out to stop at the hospital gift shop. I nearly talked myself out of it because my kids don’t need any more stuff. I decided to just look for a minute, and saw a toy cat that looked exactly like Lumiere. I had never seen one like it before. Aidia doesn’t need any more toy cats. But I bought it anyway. I brought the toy home that night and Aidia loved it. We introduced Lumiere to the toy and snapped a picture of the meeting, having no idea that it was the last evening we would share with him. I get chills thinking about how I randomly bought that toy, and how my kids spent the next several days hugging it and holding it in place of Lumiere when they cried. 

I was originally supposed to take Jack to the AJR concert in Salt Lake that night, but with my new work schedule it was too hard to pick him up from camp for the night and drive all the way back to SLC after my shift. Kevin ended up taking him, which was fine, but I was kinda bummed because I bought the tickets for Jack and I to do something fun together. After everything happened, Kevin mentioned that he probably wouldn’t have noticed Lumiere’s respiratory rate and would have just gone to bed. I’m so thankful I was home. The worst thing would have been if Lumiere had died alone in the night at home with no pain relief. We will always miss him.

Baby Lumiere

Forever 6 <3

Last picture of healthy Lumiere

A couple hours before bedtime with “toy Lumiere.” We had no idea :(

Maybe it was thanks to the distraction and shock of losing Lumiere, but surgery went really well all things considered. It really ended up being more of a scope than a surgery because once he was able to visualize everything, the uterine lining looked really good and there really wasn’t anything to remove. No major polyps or anything as we thought- and the inflammation from the endometritis has really come down with all the antibiotics. He took another biopsy just to be on the safe side. I’ve lost count what number biopsy this is. I actually stayed asleep through the whole procedure which is what I was most scared about. I did have quite a lot of pain when I woke up, but after they ended up giving me a shot of Demerol in the thigh, my pain actually got under control and I had a better recovery than I expected. Most of my lingering pain was the fresh grief. Before I went into the OR, there was a little care package on my bed with “Lucky Socks” gifted to me from the Utah Infertility Resource Center. Maybe it’s just a little joke but I got choked up. It was so nice to feel seen and know that someone had thought of me in that vulnerable moment. Plus they were way more comfy and warm than normal OR socks. Such a funny token; I hope Kevin wears them the next time they have a funny sock contest at work.

Here I am pretending like I hadn’t just been crying for hours

Lucky Socks

About a week after the procedure, my biopsy results came in. The pathology did show some fragments of polyp. The biopsy was technically positive, but with far fewer of those CD138 cells (5 per 10 high power fields). My doctor reviewed the results, and combined with the appearance of the endometrium, he didn’t feel any endometririts was clinically significantly at this point. FINALLY.

To support a healthy ovulation, they want me to take Femara during a specific five days in my cycle. This would hopefully avoid having to do vaginal suppositories of progesterone twice a day for several months in early pregnancy (which I did with Aidia). Femara is used to treat breast cancer but is used off label for infertility. My doctor said the chance of twins only goes from 0.4% naturally to 0.8% on this med. Which helped with the instant nerves regarding an ovulation med. They told me I was cleared to try to conceive on my next cycle. 

After so many months waiting for that news, I told them I would be waiting another cycle, to give myself some time to recover. Plus I know my cycle will be really delayed since I took hormones for several weeks. I need some time mentally and physically. I also need to catch up on all the supplements I need to be taking. I was able to cut the quantity down some, but still have about a dozen pills to take each day.

Thankfully, the anxiety about trying to conceive has greatly diminished. I can provide all the love, nutritional building blocks, and preventative treatments and procedures. But I don’t actually get to decide if a growing baby will be healthy or not. I think working in the NICU has helped me see and accept how little control we have in so many situations, and how to move forward and make the best of it. All I can do is my best, and it’s almost a relief to turn a bit of it over to fate.

It’s empowering to remember that we make the life we want. We don’t always have control over our circumstances or difficulties, but our attitude has a lot of power. Maybe we sometimes forget that we can choose to make our life what we want it to be. You can buy a birthday cake for dinner if you want. You could move across the world.  We have to take chances to create our happiness.