Well it has been a long time coming and I’ve needed this procedure for awhile now. I started having dislocations from an early age. My ankles first, then my knees, then my hips. My knees have always been the worst. My right knee, in particular, has had at least over 100 dislocations, each fall worse and worse. The fear was that with each fall I could break a bone and do permanent damage to my cartilage and knee.
I decided enough was enough when I fell at a wedding reception. I was having a great time dancing with my husband when I tried to twirl and my knee gave out. I was humiliated to fall in front of all these people and knew that I had hurt myself pretty bad. The pain was excruciating. Luckily I ended up with just bruising this time, but I knew the MPFL surgery that was recommended to me back in 2019 was the only way to prevent this from further happening.
The first step was finding a surgeon. You do have a choice in your care and deciding who operates on you. I had narrowed it down to two orthopedic surgeons. I originally went to UT Health. I actually had gone here two years prior, but was too scared to proceed. I liked the doctor I saw, but ultimately chose Dr. Rodriguez because he actually broke down how I could feel better and what my goals were for this procedure. He was confident in his ability to fix my problem and explained everything I would go through.
The day was scheduled originally on 5/19, but due to some last minute concerns (on my apart, I’ll explain this) we switched to the hospital instead of the surgery center. The surgery was rescheduled for the following Wednesday which came soon enough. Personally, I am thankful I had that extra week because it meant another week of Peloton training and more time to complete chores and work that I had put off.
I had everything set to have surgery scheduled on 5/19 and the weekend before the procedure, my dad called and said he was worried about the anesthesia and me going under due to my increasing mast cell issues. Over the past month or so, I have had three “attacks” where my body has overreacted to unknown stimuli causing urticaria rashes and severe stomach cramping and pain. I hadn’t really thought of this being an issue with surgery because my MCAS symptoms had been mostly related to food related.
I ended up talking to the anesthesiologist and we ultimately decided to go ahead with the surgery, but the day before anesthesiology decided the hospital would be the safest route given my history. The procedure was postponed for a week and I felt better, along with my dad and husband. Having the operation in a hospital meant being able to have a team of doctors to help if I needed them; peace of mind.
My MPFL repair was done via arthroscopy using an allograft and reinforcement meaning I have a cadaver’s ligament inside my knee. Whoever this person was they are giving me new hope; a future without dislocations. I am truly grateful for this gift and the person that contributed it to me. For pain management I have an On-Q Pain Relief Management System which is a catheter placed in my leg and is slowly administering a lidocaine-like drug into my right leg essentially numbing my knee and leg for a projected 82 hours. After the pressure released pain pack is empty, I remove the catheter from my leg. I also am taking a prescription alongside to ease the pain as the nerve block is good, but not 100%.
My bandage comes off in three to five days and my stabilizer will be on for six weeks. Crutches will be my go to for the next several weeks alongside help from my family. I prepared for surgery by purchasing a few necessities that I will share with you in a later post and for now I am focusing on giving myself grace and self love.
I have a long road ahead with physical therapy and getting back to my “normal,” but I am hopeful this will be an end to my chronic dislocations and knee pain. My surgeon is highly confident in the surgery and it’s outcome, so I can’t help but be optimistic that this may be the end of my knee troubles (at least for the right side).
🦓 I am joining the EDS Awareness Month Challenge – May 2020.
Day 01: Meet Me! – I am Cass! I’m 27 years young, a mama to an 1.5 year old son, Griffin, and a wife (& best friend) to @calebrobnson. I live in Austin, Texas and work in a laboratory as a clinical research assistant and have spent the past month working with microbes to test the efficacy of preservatives in cosmetic products. I graduated in 2017 from Texas Tech with a degree in biology. (Wreck’ Em). My favorite past time is Netflix and Paint. I love doing custom work to create artwork for nurseries. I am a pug and sphynx mama and my fur (& furless) children bring me so much joy. My husband and I go hard at Modern Warfare (gamer tag: motherpuggy) – we play on the weekends and evening when I have energy. My favorite things besides my babies, are Diet Coke, pad thai, sour candy, burritos, tiny houses, modern interior design, tattoos, Harry Potter (and all other geeky series) and scary movies. I have Ehler’s Danlos Syndrome along with comorbidities of Chiari Malformation (brain surgery in 2015), Mast Cell Activation Disorder, and Undiagnosed GI & autonomic issues. I live with chronic debilitating pain in my neck, back, and knees and suffer from frequent dislocations. Despite my conditions and prognosis, I still have a fighting spirit and aim at being the best mom I can be. 💄
Some fun facts about me: I’ve lost about one-hundred pounds since 2013, my husband and I met and got married within two months of knowing each other, & I grew up as a military brat and lived in several different places including Cuba!
If you have been following along with my instagram feed, you may have noticed that we have a new (bald) addition to our family! After years of wanting a Sphynx kitten, our dreams came true when I surprised my husband with a special early Christmas gift: a hairless pink and gray kitten. I hadn’t planned on getting a Sphynx kitten so soon, but the opportunity arose and I jumped on it. It was so hard not telling my husband about her, but so worth seeing the shock on his face when he first lay eyes on our little girl.
Nimbus Tonks is a harlequin sphynx and she is beautiful and so sweet. I’ve never have had a cat that was so friendly and “dog-like” in nature. I made sure to film the magic moment when I secretly picked her up from Cedar Park, drove her to our home in Austin and plopped her into my unsuspecting husband’s arms. I included the video below and I have to say, I am so in love with my hubby’s priceless reaction.
Nimbus has been adjusting wonderfully to our little family. Our pugs were a little hesitant at first about inviting a little strange-looking creature into our home, but now they are cuddle buddies and it’s like she has been here all along. Having a Sphynx cat, however desired and awesome they are, requires a lot of T.L.C. They are not a low maintenance breed and I definitely suggest thoroughly researching the breed before investing your interest in adding one to your family.
Just some of the care we provide to Nimbs, which goes out side of ‘normal’ cat care include: weekly baths, daily use of grooming wipes, biweekly ear cleanings, daily eye cleanings, weekly gunk removal from nails and nail trimmings, as-needed moisturizing, and my absolute favorite; wiping her hiney hole after she drops a bomb… Ah. Yes the joys of being a Sphynx mama. For us, going the extra mile to make sure Nimbs is healthy is worth it for us. We also take special care in making sure he body temperature is regulated with self-heating beds, plug-in small animal heaters, blankets, and sweaters too.
Nimby’s personality has blossomed since she has adjusted to her new home and family. She LOVES food with wet food being her absolute favorite. She enjoys cat milk as a treat, but has a sensitive stomach to any human foods (that Griff may or may not have tried to feed her on a couple of occasions). She loves playing with her sisters, especially Eleven, who will chase back and forth in a wild game of tag usually taking place in the late nights when everyone should be in bed. Nimbus is a hunter when it comes to any uninvited insects and lets not forget Christmas ornaments that have managed to stay trapped underneath our bed: aka her lair.
We’ve had a few potty hiccups here and there, but Nimbs is a great addition to our home and we have greatly enjoyed her company. I plan on adding a more detailed post on Sphynx care and the products we use in the near future, so be keeping an eye out if you want to see more our our “little alien”. We have added a new member to our Robinson family every year since 2016, so I can only wonder as to what 2020 will bring.
If you haven’t seen Netflix’s Diagnosis by now, you’re definitely missing out! My husband and I started watching it a few months back and we instantly were hooked. For years I have been classified as a medical mystery. So many different doctors told me: “it is in your head” or “it’s just a muscle sprain” and the occasionally “I honestly don’t know what we’re looking at.” I had shingles at seven (rare at that age) which confused a lot of medical personnel, but this was nothing that was to come.
Throughout my childhood I was seemingly healthy. I had chronic nosebleeds most summers, my ankles rolled so many times I lost feeling in them, and my knee caps started dislocating around the age of 12, but other than those issues I was pretty healthy. I had my tonsils and adenoids removed around the age of eight for chronic inflammation and I had ear tubes put in as a baby because of ear infections. Other than being overweight I looked and acted like a normal child.
It started with my ankles. From the time I could first remember I often rolled and twisted my ankles. I had such instability in my ankles that my ankle became numb from how many time I rolled them. Then fast forward to 2003. I did gymnastics and was always super flexible. I was at a K-Mart reaching up for an Easter Basket when I experienced my first knee dislocation. I’ve never experience such pain in my life. Unfortunately many more dislocations in both my knees and hips would follow.
Around sixteen my hands and feet started turning blue especially in cold environments or stressful situations. I went to the ER once for “diabetic” like symptoms in my feet (they were blue and numb) and was discharged with a migraine. My primary care physician (PCP) diagnosed me with Raynaud’s Syndrome and I was told to try to limit my extremities to cold temperatures. I bought some special gloves for when the temperature dropped, but we went forward not knowing this was a clue to the puzzle.
Around the age of twenty-two, I started having major issues. It began with an allergy problem. I would have anaphylactic reactions out of now where and to foods I have had multiple times with no problems. I lived in fear as I was terrified that whatever I ate could cause my throat to close. I had one emergency room visit where they administered epinephrine and one allergy clinic emergency where they administered it as well.
I had extensive allergy testing done and thought I had something called mass cell activation disorder. Based upon a blood study the allergy specialist said that I have higher amount of basal cells or the cells that cause a reaction to allergen. I kept Benadryl and my epi-pen on me at all times. Despite testing several allergens, no food could be pin pointed as a trigger and I was thought to be allergic to some unknown spices.
Fast forward a few more years I had a skin and bone marrow biopsy done after I went to see a dermatologist for urticaria and allergic reactions. My skin basically overreacts to stimuli. I was diagnosed with idiopathic anaphylaxis. My bone marrow biopsy came back normal, so they ruled mastocytosis out, yet I am still having allergic reactions. I was told by one doctor that I have irritable bowel syndrome and maybe that was causing these reactions, but since becoming pregnant in January 2018, I have gone into a bit of remission.
I started having gastro problems in 2014 (around 22 years of age). I had chronic diarrhea and a lot of nausea with vomiting. I lost a lot of weight unintentionally because I was so sick that summer. I had a colonoscopy done and all that was reported was inflammation. I am picky about what I eat because I am afraid of the outcome. I started cutting out heavy sugars, fats, and spicy foods. I later went on to have such bad abdominal cramping that it caused me to almost faint. I had my gallbladder taken out at seventeen from rapid weight loss and from cutting out fats from my diet that caused gallstones, so I knew it wasn’t a gallbladder issue. My PCP prescribed dicyclomine for stomach cramping and diagnosed me with what he though was irritable bowel syndrome. Another doctor I saw said he thought I had diverticulitis because of the extreme pain I was in. I remember driving to the hospital and then changing my mind and pulling over to ride the pain.
While I was ongoing my allergy and gastrointestinal issues in fall of 2014, I stood up and immediately felt faint. I went to the bathroom and I looked white as a sheet. I felt clammy and my heart felt like it was palpitating out of control.
I had previous “attacks” where my heart would beat so fast for no reason. I went to the hospital once when I was sixteen for it and they ruled it as an anxiety attack, although I disagreed at the time. I know anxiety and I was watching a movie in a hotel room complete relaxed at the time.
I felt beyond sick. I collapsed to the ground and told my boyfriend at the time I needed to go the emergency room. I felt like I might die. I began feeling nauseated and I knew it was serious. Upon arriving I told them I was having chest problems. I thought maybe it was a heart attack. I was already crying because I could feel my heart. It pounded. It felt like it would explode. They did an EKG right away and called the cardiologist on call. They said it was atrial fibrillation. The doctor had never seen someone my age with it. They tried administering drugs to get my heart back in rhythm but to no avail. I consulted with my dad (a nurse) and we agreed I had to be cardioverted back. Basically my heart need to be shocked. They put me to sleep with an anesthetic and I woke up not long after with a pain in my chest but a normal heartbeat.
I had a couple more episodes after this one but no where as severe. I was tested for POTS because of the problems I had feeling faint upon standing and I had almost passed out several time while using the toilet. Despite matching on a lot of the symptoms the test came back negative.
Muscle Pain & Weakness
This has been the most persistent symptom of them all. I have pain every day in my back and neck. I thought when I had my operation (posterior fossa decompression) that I would be better, but it’s much worse. It started in the summer of 2015. My neck and back would put me in tears it hurt so bad. My PCP at the time told me it was a muscle sprain. I tried muscle relaxers to no improvement. Doctor after doctor told me the same thing. Must be a sprain. I finally received a MRI and my doctor failed to mention that the results stated I had a cerebellar tonsil herniation. She told me that it shouldn’t affect me and basically it’s all in my head, so I fired her immediately and went to a neurosurgeon that specialized in Chiari Malformation (after doing extensive research about what cerebellar tonsil herniation meant). Combined with the other symptoms I will further talk about in this post, with the herniated tonsils was too much to “be in my head.” I continue to have major cervical instability pain that makes everyday a challenge for me, but I have great days and I have bad days and keep progressing to hopefully a manageable pain future.
In that summer of 2015 I began having severe short term memory loss. I used to have such an amazing memory and was quick to recall facts, names, etc., but now I was constantly arguing with my boyfriend at the time about things I didn’t remember. Where did I put my keys? Did I take my medicine? I couldn’t remember doing the most basic of tasks. It was terrifying. How would you feel if you couldn’t remember a good portion of your actions? I started having panic attacks because of what was happening.
Slurred Speech & Aphasia
In addition to the memory issues, my speech began to slur. I wasn’t even aware of the issue until I called my dad and he asked if I was intoxicated. I began to have difficulty speaking my thoughts. A sort of aphasia, I guess you could call it. I often confused words or had a difficult struggle in getting out my thoughts. Going from a scholar to this was extremely defeating. I was in what was supposed to be my senior year of college when this hit. It took a toll on my grades and my self-esteem. I was terrified. As we were formulating ideas (before the Chiari results of the MRI), we were thinking possible brain tumor. Was this the beginning of the end for me? I began to mourn the person I once was. I went from running 5Ks for fun to being a lifeless shell of my former self.
The migraine were extreme. I’m talking full on nausea, ocular issues, light sensitivity. I basically lied in a dark room praying for it to end. I couldn’t open my eyes. The pain shot throughout my head and felt as if it were going to explode. I began to see a neurologist. I tried several anti-migraine medications: zomig, amitriptyline, rizatriptan, and others. The migraine were almost daily. I would have to miss class and basically laid there in agony. Too sick to eat, in too much pain to move. I currently am going through a remission of this symptom ever since getting pregnant with my son. It’s been a miracle from suffering so frequently to having them so rarely and I hope it’s something that will continue this trend.
My balance was beginning to become terrifying. I would suddenly feel as if I would fall over when walking normally. I was on high alert as I was afraid I may fall at any moment. It got to be so bad I’d use a walker to make sure I didn’t fall right before my surgery. I felt like this was an all time low in my health. Here I was. I was supposed to be a healthy, happy twenty-three-year-old and I was using a walker to get to my college classes. I was humiliated, but more so terrified for what was to come.
Another symptom that appeared mysteriously was found at my eye exam. I ended up having vertical nystagmus that had previously not been seen. I later found out that it was a symptom of Chiari Malformation that had not been caught before. It was very slight, but sure enough my eyes made uncontrolled repetitive movements up and down. Nystagmus can indicate central nervous disease, so I was on high alert after I was told I had it.
With all of these symptoms coming in different waves, I knew it was time. I needed answers. I am tired; tired of the doctors juggling different diagnoses and medicines back and forth. It’s physically and mentally exhausting having to explain myself over and over and people not understanding half of what I go through; Not understanding why I can’t make it to their event and why it’s hard for me to confirm plans and how hard it is for me to put on a mask, pretending everything is okay. I’m tired of answering “I’m fine” or “I’m okay” because explaining that my chronic illness is eating away at me everyday is too long and difficult to mention. I’m tired guys.
I decided to email the doctor from Diagnosis and she led me to the online Facebook support group that aims at trying to diagnose you. And… I got my answer. All this time of not knowing and I’m fairly certain it’s correct and I mean that I am 90% certain. Ehler’s Danlos Syndrome (EDS) with Mast Cell Activation Disorder and Chiari Malformation, both side conditions of EDS. In the past I thought I might have this, but I was told there was no test for it and that is incorrect. I have all of the matching identifiers of this connective tissue disorder.
I couldn’t believe it. I had heard about EDS being in the spoonie community, but I had never really pinpointed it as the cause of my many issues. I took the Beighton Scale Test and I am a 8/9! I am making an appointment soon with a geneticist to have a blood test done and to determine what the odds would be of carrying on my Hypermobile EDS on to my son and future children. I can’t help, but feel comforted that I have a label now. Maybe the doctors will finally take my pain seriously with this diagnosis.
My future is uncertain, but I strive to be one thing: happy.
Look at me being productive and writing another post within a decent amount of time! Yay, a gold star for me! I hope that you all have had a very merry Christmas and a happy New Year! I spent Christmas here in Austin this year with my family and we enjoyed all the festivities. Today’s post is going to be dedicated to my skin care routine. I often get many compliments on my clear complexion, so I thought I would share my routine in case you are interested in how I keep my skin maintained.
By no means do I think that any of these product are miracles “cure-alls” to unruly skin, however I do believe you have to put work into your skincare to get the desired results. I was blessed to have a good complexion in the first place, but I do believe it is important to treat your skin well. In addition to a good diet, lots of water, and essential vitamins, using the combination of the right products goes a long way for targeting a multitude of different issues. This post is not sponsored, meaning these are the actual products I have discovered, tried, and liked without any outside bias on my opinions.
I am one of those people who wake up with minutes to spare, so I need something quick, easy, and effective. This morning routine takes on a couple of minutes and leaves my skin feeling fresh and ready to take on the day.
Every morning I make sure to start by washing my face to ensure I have a clean “palette” for my morning routine. I started using a foaming cleanser from The Face Shop as recommended by my best friend about a month back and I am definitely enjoying how light it feels. Its formulation (enriched with rice water and vitamins A, B, E, and ceramide to hydrate skin) is perfect for my sensitive skin and the scent is not overwhelmingly strong. I use circular motions to remove any impurities and thoroughly rinse my face afterwards. ($14.00, The Face Shop)
Once my face is dry, I use just one drop of Hyaluronic Acid 2% (hydration support) on my nose and chin only and rub it in. I had previously used it on my entire face, but it seems to be too strong for my sensitive skin around my eyes and forehead, so I stopped using it on my entire face and now only add it once a day to those specific areas. ($6.80, Ulta)
After adding the Hyaluronic Acid, I add a couple drops of a peptide serum called “The Buffet” (an anti-aging and hydrating serum) and cover my whole face and neck with the serum. ($14.80, Ulta)
The last step to my short morning routine before applying my makeup is adding my sunscreen moisturizer. This sunscreen doesn’t have an obnoxious scent and is non-greasy. It’s formulation is actually like using a moisturizer instead of a sunscreen, which I love. I am not a fan of sunscreens, so it takes the right product for me to use one! ($14.99, Amazon)
My evening routine is a bit more complicated than my morning one given the fact that I usually have more time and have to wash my makeup off for bedtime. However, it is not too bad and I always enjoy smooth skin!
To start the process off, I again use my rice brightening cleanser to start washing off my makeup. I usually do this process in the bathtub or shower as I find it more convenient. Word of caution, if you do purchase this cleanser, make sure not to get any in your eyes, ever. It’s like pure jalapeno juice being squirted in your delicate eyes. ($14.00, The Face Shop)
After rinsing, I do a second wash with my essential oil cleanser. I love the smell of this product (it’s rose) and I feel like it is a necessary step in removing any built up dirt, sweat, and make-up from the day. I previously used this entire skin care line, but it became too costly, so I limited it to one of my favorite products. Not only does this product remove impurities, but it also balances my skin’s natural oil production! ($31.50, Kari Gran)
After drying my face thoroughly, I use Thayer’s Witch Hazel Lemon Astringent to soothe and cleanse my face. I love that this product is all natural and works on the most stubborn of makeup and the scent makes my skin feel energized and refreshed. ($10.95, Ulta)
To be absolutely certain all my makeup is removed, I also use micellar 3 in 1 makeup removing wipes. These wipes are perfect for sensitive skin and made with repurposed cotton; they have 99.5% natural ingredients, so you can feel good about what’s going on your face. ($4.99, Target)
Now that my face is makeup free and cleansed, it’s time to progress to the next steps. I use two different serums at night to leave my face feeling hydrated and young. I start with Ascorbyl Glucoside Solution 12% which is formulated to brighten skin and reduce signs of aging with the help of its ingredient, vitamin C. ($12.90, Ulta)
My second go-to serum is Retinol 0.5% in Squalene by The Ordinary. This water-free solution is one of my favorites to use as it leaves my skin feeling hydrated and fresh. It is formulated to provide anti-aging and refines skin texture. The best part of using the ordinary is that you are paying a low price for the ingredients alone and not all the “extra” added fragrances and products that other skincare lines love to charge the wazoo out of. ($5.80, Ulta)
My skincare routine is nearly complete! To finish off, I added a moisturizer and vitamin C crystals right before I call it a night! I use The Ordinary’s natural moisturizing factors + HA moisturizer and mix in Comedix Pure C Vitamin C mixing crystals. This combination helps even skin tone, reduce pigmentation, aids in anti-aging, improve elasticity, and leaves my skin feeling hydrated. (Moisturizer – $7.70, Ulta, Mixing Crystals – $32.40, Amazon)
This completes my skin care routine! I love trying out new products and am always open to suggestions in improving my routine. So far I have loved the results from my current routine. My skin issues usually include dry skin and black heads. I try to include a clay mask or face mask and deep cleansing blackhead strips at least once every week or two. I don’t have a preferred brand when it comes to face masks, but I am a fan of Pacifica products and use the clay mask to target dirt build up in pores. As for my blackhead strips, I use Bioré’s deep cleansing nose and face strips to target blackheads on my nose and chin! These strips are designed to bond to only blackheads and not the skin, so it doesn’t rip off skin cells! (Clay Mask – $5.99, Target, Blackhead Strips – $7.99, Target)
I hope you enjoyed a little snap shot of daily my products and feel free to leave a suggestion on what else I should try below!
He’s one! He’s one! We made it! Many ups and downs, but our little guy officially turned one on October 5th. Of course, me being the mom that I am, I had to go all out for my son’s birthday celebration. Griffin was loosely named after Harry Potter’s Gryffindor house, so staying true to his namesake, we threw him “The Chosen One” party: a Harry Potter themed first birthday.
I took this opportunity to put my creative talents to work. Since I had just opened my small business, Griff ‘n Co, I wanted to use my son’s party as an example for some of the ideas I can make happen! I took it up myself to create a truly magical setting for my son and his party guests. I made signs, created spell-bounding confections, and purchased props to make his party come to life.
How is it possible my son turned one already? It seems like just he came into the world as my tiny 7lb 1 oz baby and now he’s nearly 25lbs and is easily fitting in to 18 month old clothing! This past year with him has been full of many highs and lows, but I have cherished being a mommy through it all. I wasn’t too sure I would have kids given my medical history, but Caleb and I decided if it was meant to happen, it would happen, and so it did!
I thought I would share my secrets (of chambers) to transforming your party into a truly enchanting get together! So continue reading on if you want the details of my son’s party decor and recipes to making your Wizard party a success!
Hi guys. I know it’s been a good while. I have been horrible about staying on top of writing; juggling my free time with being a mama and work has been hard. Yes, that’s right you read correctly. I have a job! I finally have the career I have been desperately searching for. I can even use my biology degree! I work as a clinical research coordinator here in Austin, Texas and I am absolutely loving my position thus far.
So you’re probably wondering what being a coordinator entails. I work on recruiting new participants for studies and making sure that they match the inclusion/exclusion criteria. I am also in charge of screening them to make sure that no medications, health conditions, or allergies interfere with the study. Clinical research is all about data collected in that moment, so I have to take extra precautions to make sure that all data is taken down in real time, which requires the utmost attention to detail. I check in panelists when they arrive, band them, and screen them appropriately as required, as well as make cold calls in the back office.
Life has been up and down. Griffin turned one, Caleb and I celebrated our third year wedding anniversary, I opened a side business: Griff ‘n Co, and we added a new family member! I plan on doing late posts on these events, so stay tuned. I also have been focusing on taking care of my skin and using some amazing products to rejuvenate it and get a beautiful complexion. I am eager to share my routine! I just wanted to briefly check in with you all and let you know that I am still here and trucking on. As far as health, I finally got a diagnosis. Years of suffering have led me to the answer I had been seeking! What are your guesses? You’ll find out soon.
One of my 2019 goals is to get back into blogging. I miss my platform of self expression! 2018 went incredibly fast in a slow kind of way. I was pregnant for nearly the ENTIRE year and so many changes happened. We moved, Caleb left the Army and we started our new life in Austin, Texas. As you all know we now have a bundle of joy in our lives. Griffin is now seven months old and I can’t tell you HOW FAST it has gone. He is the absolute joy in my life and has given me new meaning.
I have been asked: how do you do it? How do you care for a baby when you have a chronic illness? My answer is this; Griffin is an extension of myself. Therefore, I take care of him like I would myself, only better. He is the reason I smile when I wake up and yes, he has been the reason I have cried multiple times, but I wouldn’t change it for the world. I have learned so much in becoming a mother. Patience is a major thing I have to learn to gain. Before my son, I hated waiting. But now it’s a lot of my life. I wait for Griff to fall asleep, I wait for him to eat, I fix my entire schedule to wait on whatever it is that he needs.
I can’t tell you how amazing it is to see my baby. He looks so much like me, but has his daddy’s ears and expressions. He is generally a happy, easy-going baby and he LOVES watching the pugs. He has beautiful amber brown eyes and a lot of hair growing in. He has two little teeth that we brush every night and the cutest dimples to illuminate his smile. He has the softest skin and smells of powder and he loves me with his whole little heart. How lucky am I to have this boy in my life?
I am a stay at home mother currently which has its ups and downs. I wanted to be here for Griffin’s many firsts and I don’t really trust anyone else to give him the care and compassion that my husband and I do. I love being with him at every moment, but it also leaves me lacking self care. I rarely get a moment to pamper. I generally go makeup less, hair disheveled, and am in my pajamas nearly all day. I have a repetitive cycle of feeding the baby, cleaning the bottles, cleaning the house, pumping, cleaning the pump parts, feeding the baby, and so on. I don’t get much time to “relax” unless I forfeit my house chores or something on my list.
Being a mother is the best job I have ever had. It’s the most challenging and rewarding job I have ever had the pleasure of having. On bad pain days, I push through because my son is number one over anything. Over pain. Over hunger. His needs come first over any of mine or my husband’s and we are both okay with this because he is one of the best things that have ever happened to us. He is my reason.
To all the mamas out there. YOU are enough. YOU are amazing and you’re doing a great job. Never compare yourself to others because YOU were perfectly made for your baby. There is not a single person who could do a better job than you are doing. (Goes for adoptive moms as well) Your son or daughter was brought into your life because you are the BEST for your baby. Never forget that.
I never expected my pregnancy, a seemingly healthy one with minimal complications, to come to the abrupt end that it did. My entire pregnancy had been wonderful: low blood pressure, great bloodwork, and despite some hip pain, no other issues. I was considered high risk because I have Chiari Malformation which can cause complications when delivering, but I experienced nothing out of the normal for nine months.
At 35 weeks I went in for a check up: my blood pressure was slightly elevated and I discovered I was anemic. I was given an iron supplement, but this was the first sign that my blood pressure was out of my normal range. At 37 weeks I woke up with a bloody nose two nights in a row, but on the second night I had a horrible headache. Using Dr. Google’s advice, I went to the nearest Walgreens when Caleb got off school to have my blood pressure taken. 146/110. I immediately called the labor and delivery (L&D) triage line and the nurse told us to come in. Luckily at this point I had my hospital bag packed and everything lined up for my pugs to be taken care of.
Caleb and I ran home grabbed the bags and packed our dogs bag for their sitter. We were on the road shortly after as we made our one hour drive to Darnall Army Hospital. Upon arriving at L&D, I checked in and told them I had elevated blood pressure. The wait to get in a room was agonizing. I could feel something was off. I felt anxious and on edge from the blood pressure. I was called to a room finally where I had to yet again wait for the longest 10-15 minutes. The nurse came in and took my blood pressure; that’s when everything changed. She immediately paged for several doctors. The tiny room filled up with as many staff as it could fit and my husband went outside to update our families. I was being admitted for preeclampsia, a condition that occurs only during pregnancy that is marked by high blood pressure and protein in the urine. Preeclampsia occurs in pregnancies that are over twenty weeks and effects 5-8% of all pregnancies (americanpregnancy.org).
I had a feeling. The Sunday before while at church, I had this gut feeling that the upcoming week would be the week I would meet our baby. We had maternity photos the Friday before and I had felt slight cramping, but otherwise felt great. I usually would lazily wait to take my weekly photos on Wednesdays, but I told my husband I wanted to take it earlier this week just in case. We got our 37 week “bumpie” taken just in time, the night before I was admitted.
Once admitted many calls were made to our families. I was told that my dream of mobile laboring was no longer possible. They needed to get me started on magnesium as soon as possible to combat my blood pressure. Magnesium unfortunately has some horrible side effects. I was now a fall risk because of it and needed a catheter. I would not be able to get out of bed as the medication made me feel hot, flushed, and irritated. I’d frequently get headaches and feel as my chest were heavy and painful. I also dealt with persistent nausea. My nurse compared the effects of magnesium to chemotherapy. A good way to start my labor no?
I didn’t realize how many times I could be induced. I received the foley catheter, a catheter that blows up in hopes of widening your cervix, cytotec (a pill that is used to cause abortions in early pregnancy) right against my cervix (the most painful causing contractions), cytotec taken orally that I was given several times, pitocin, and I had my water broken. Nothing helped me dilate. It was the slowest progressing labor of all time. I was determined to go all natural so I labored for 18 hours with no assistance, but once they put the cytotec next to my cervix, I contracted for 3-4 hours straight with no breaks. This whole time I screamed in agony. I checked out a few times when the pain became too much. It got to the point where I was silent screaming and I was just going to a state of delirium. I finally asked for an epidural.
It took the anesthesiologist about 3 hours to come in to finally proceed. They had me on a horrible uncomfortable position and I was in so much pain. My husband and mother were not allowed in the room. I made the mistake of allowing a student do the epidural. She had a tough time advancing it and I ended up with a hot spot on my left side meaning I could still fill contractions on that side. I don’t think she necessarily did a bad job, but I would have preferred someone who has done them numerous times for numerous years. One of the reasons I wanted to labor naturally is because of my Chiari. The risk of accidentally puncturing something could mess up with my cerebral spinal fluid. I just prayed the entire time as she gave me the epidural. I then got so entirely sick that I began vomiting everywhere because my blood pressure dropped so fast.
Once my husband and mom returned the laboring continued. I felt some relief with the epidural. They started me on pitocin and oral meds to “kickstart” contractions. I could feel my abdomen tightening with contractions but the pain was almost gone with the exception of the left side on occasion. Every shift change I’d have a new OBGYN come in and check on me. I was not dilating. At this point I was beginning to feel hopeless. I had a labor and delivery soundtrack of Lauren Daigle and other soft tunes played on an endless loop in order to breathe through it.
Through this all I was told an OB asked me what I wanted to do at this point and I apparently said I wanted to push. I do not remember this conversation as I was incoherent from the analgesic I had requested. Had I been coherent perhaps I would have requested the c-section I needed much earlier in this process. On night number two they broke my water. I had more cytotec orally and that when I begin hearing of my secondary problem: hyponatremia: A condition that occurs when the level of sodium in the blood is too low.
The doctors noticed that my sodium level began to drop rapidly as I was urinating it all out. Let me just state that this is a very rare situation; so rare, fact, two different teams (one from OB and one from internal medicine) asked to do a case study on me, which I happily obliged. They believed that the cause of the drop in sodium was due to the preeclampsia, but the issue is both conditions can cause seizures and they wouldn’t be able to know or treat which one. I was on strict fluid restriction (down to 400 mL a day in the ICU). My mouth craved water, but they didn’t want the water to interfere with my sodium levels so I went like this for over 48 hours.
On October 5th, 2018 I had a doctor from internal medicine who was a pulmonary doctor come in and tell me the problem with my sodium levels. Immediately after my obstetricians came in to update me on the seriousness of my situation. They told me an emergency c-section was needed to prevent me from having seizures. At this point I had been in labor for 46 hours and my baby’s head was in my birth canal. All this waiting only to have a c-section was a bit disappointing, but I was so ready to have my baby, I immediately said let’s do this. I had to have my epidural redone because it had failed and a spinal would take too long.
Before I knew it the epidural was done (it went so much better than before: I had a pro at epidurals put it in) and I was being wheeled to the operating room. I was terrified. I began praying and crying. I had the difficult discussion with Caleb that if it had to come down to my life or the baby’s to choose the baby. It was incredibly difficult. They discussed all the risks and stated I was at higher risk for bleeding out, but they’d have blood standing by. They told me I’d go to ICU afterwards because of my sodium levels. I knew their was a chance I wouldn’t make it. I was at risk for losing my life. I couldn’t stop crying.
The anesthesiologist was trying to make sure I was completely numb, but she was asking if I could feel her pricking so quickly that my brain was overloaded. I told them no on a spot I could feel and then immediately told her I did feel the left side after they were getting prepared to start. Luckily she listened to me and went in an adjusted the amount of medicine in my epidural because sure enough I had sensation still. They finally agreed I was numb and my husband joined me in the OR. He sat by my head holding my hand as tears streamed from my face. They started and it went so quickly. I could feel the pressure of tearing and pulling and it made me instantly sick. I began vomiting which throughout this whole ordeal from admittance to this point was a recurring theme. I just prayed the entire time. The OR team let me pick the music, so I went ahead with Lauren Daigle again because her voice soothes me and I needed to hear the message she sings in her songs.
The delivery was so fast. I heard a cry and they told Caleb to announce the gender: “It’s a Boy!” I couldn’t stop crying. Caleb went over to cut the cord and take photos of the baby in what seemed like an eternity. I just wanted to see him. The team shifted their focus on me. Making sure I was okay and that all the bleeding was under control. They finally brought my baby boy to my side. The first time I saw him. He’s so perfect. I gave him kisses and held his little hand. Griffin. Our sweet baby was finally here after a devilish ordeal. I was happy he was here but sad I would have to be away from him. I attempted to get him to latch on for breastfeeding but the side effects from the magnesium made him too tired. I cherished those brief few minutes. I could not hold him for obvious reasons, but I gave him kisses and told him how much I loved him. He is the most beautiful baby I’ve ever seen and he looks so much like me, which was a surprise as I thought Caleb’s genes were much stronger.
Saying goodbye to my husband and baby was the hardest thing I had to do. I was transferred to the ICU while my husband went up to the mother and baby unit to bond with our little man. I had requested donor breastmilk, but they would not let him since he wasn’t a NICU baby. So he had to be fed formula via syringe. Caleb got to do skin to skin and couldn’t leave him at all to come see me because only his guardians (mom and dad) could be with him in the room. In the NICU I felt isolated and it felt like a dream. It didn’t really hit me I had my baby because I didn’t get to bond with him after birth.
The night in ICU was horrible. I had a male nurse that didn’t want to massage my uterus (something’s that incredibly painful but has to be done to ensure that mom doesn’t bleed out). I was at higher risk because I couldn’t be give pitocin (due to my sodium issue) after birth which helps the uterus contract to help blood vessels from bleeding. He told me I could do it myself; like I would know where to massage let alone be able to put that much pressure on it. He didn’t want to do essential thing for post partum care. He said I’ll get a female nurse to do this. I requested someone from L&D to come down so I could express my concerns but no one came. On top of that he brought me a pump and said “you know how to do this.” How the hell would I know how to pump when this is my first baby. He tried to lazily show me and put the pump somewhere I couldn’t reach. I began crying out of frustration and texted my dad what was going on.
Luckily my dad was an officer in the Navy and retired with a high rank so he called up the ICU and asked to speak with the head nurse. He basically told them it was unsatisfactory what they were doing and that if my nurse was incapable of doing what was needed of a post-partum patient that they would be reported. I could tell my nurse’s tune changed. He came in acting all rude and then eventually cooled off and said he would do what he was supposed to do. I was still in fluid restriction, still had my catheter in, bed ridden, and on magnesium so I was utterly miserable. I just wanted to see my family. In the morning all my doctors came by to check on me. I was asked if I could be part of case studies and my labs were redrawn every 2-4 hours around the clock. I was exhausted.
The day I was supposed to be transferred to be reunited went on way too long. I was told one hour after lunch I would have my lab results and be able to go to mother & baby if they were good, yet the doctor who was in charge of transferring me over got called in to an emergency and I had to wait and wait. It’s ironic because he was part of a medical team of about six doctors yet it had to be him to put in the orders. I cried in desperation. I finally was reunited after twenty-six hours of being apart. I finally could hold my son and bond with him. It was an overflow of emotions. All this pain, suffering, and trauma was worth it to have my little Griffin. I was so happy to be reunited with my hubby and baby boy.
After staying in the hospital for five days in total I was discharged. I suffered a few set backs battling my blood pressure, which sent me to the emergency room three days after being discharged and suffering from delirium. I finally made it home and am working on my recovery. Griffin is healthy and we are truly blessed for this. I had been struggling with my health since being discharged: pain, medication side effects, and my blood pressure kept me from doing normal mommy things after arriving home, but I’m learning to cope with these things until I’m back on my feet.
I have set up a Venmo (@CassandraShea) and Paypal, just in case anyone would like to make donations towards my uncovered emergency visit and baby necessities for Griffin. We’re at a tough spot right now financially and asking for help has always been a hard thing for us, but we’d greatly appreciate it if you have the means to donate just a small amount or share. Your love and support means the world to us especially as we go through this tough transition. If you have any questions about my delivery or situation please feel free to ask. I thank God so much for getting me through this difficult time as well as the love and support of my family and friends who have generously given their time to aid us. We are so blessed to have people who truly love us and want the best for us.