Friday, June 10, 2016

Dear Eliana - The Birth Story

Dear Eliana,

I am writing to you a day before your first birthday. Memories of this time last year keep flooding back to me and I wanted to make sure to share them with you when you are old enough. I am sure as you know by the time you are reading this that your mom likes to go into detail, especially when it comes to telling a story or recalling a memory. Thanks for bearing with all the nitty gritty, somewhat gory but totally natural and miraculous, kiddo.

The week leading up to your birth was full of expectation. I had a sense you would be joining us soon. I had a friend take a photo of me, looking very pregnant, with my bass guitar. While you were being formed, you got to feel the deep vibrations almost every week while your daddy and I played music on the church worship team.
Rocking the bass three days before you were born.

A day or two before you came, I bought and ate some pineapple in hopes that this might speed your arrival. My joints were aching, my feet were swollen, it was difficult to sleep, I peed a lot, but most of all, I was excited to meet you. I couldn't believe how large my tummy had gotten and marveled at the fact that there was a living being, spine, eyes, heart and all right beneath my skin. I could see you move and would rub or tap the areas where your foot, bottom, or knee would protrude. Sometimes you even tapped back, moving in response to my touch. It was so incredibly fascinating.

Last belly selfie before you arrived.
We made it to 39 weeks, 3 days, and the size of a watermelon! This was painted on me by me. :)
Yikes! Marshmallow feet!

The hospital bag was packed about a week before your due date of June 14th, 2015, but I hoped you would come earlier. I even told you the the 11th sounded like a nice date. The night of June 9th your dad and I stayed up late together, most likely chatting and watching Netflix with a cat or two lounging on top of my tummy. As I got ready for bed I had a feeling that I should be prepared so I made sure to wear a pad. I'm sure I saw at least midnight on the clock as I rolled heavily from side to side.

Blue on my tummy.
Murphy on my tummy.
June 10th, 2015. 3am. My eyes popped open. Something was different. I sat up and felt a trickle. Uh-oh! I rush-waddled to the attached bathroom, my hands clasped together between my legs. I made it to the linoleum and mostly onto the toilet when whoooosh! There goes my water!

Once the whoosh slowed and I cleaned up a little I made sure there was no blood. While pregnant with you we had a few risk factors - the most scary being the possibility of vasa previa, where fetal blood vessels cross over the cervix (AKA your exit). When vasa previa is undetected and the membranes rupture, subsequently breaking the blood vessels, a baby can bleed out within minutes and have severe complications or die. We had a high risk ultrasound for this and it was ruled out but I was still on edge. Whew, no blood.

I sat there feeling blurry and bright at the same time. This was it. I was going to meet you soon. Better tell your dad!

I gently woke Mark by calling his name.
"Huh? What?"
"My water broke."
"Really? Tell that baby to stay inside. It's too early."

We made a call to the hospital and they told us to try our on-call doctor. I felt so bad waking her up but I got in contact with the doctor on call, let's call her Dr. S. She told me to call the hospital back and let them know I was coming in. Once the water breaks, they want you in the hospital to prevent infection, even if labor will last a long time.

Sometime during those calls around 4am, my contractions started as a soft, intermittent ache in my lower back. I leaned on the counter, swinging my hips a little as they started to get stronger. Your dad grabbed the hospital bags, loaded the car, and then we were on our way. My contractions continued in the car, all back labor, and were about 5 minutes apart.

Your dad dropped me off at the hospital door with our bags and went to park the car in the ramp. I stood there with a goofy, excited grin on my face. A man passed and asked if I needed a wheelchair but I was OK and happy to be upright. Your dad joined me and I waddled my way to the labor and delivery floor, stopping here and there as I waited for contractions to pass.

The check-in was not the most fun. The nurse at the end of her shift seemed tired and annoyed with me when I paused in answering her questions for a contraction. "It's just going to get worse" she quipped. They were also asking me if my water really did break or if I may have just peed myself. We heard a woman yell down the hall, "Does anyone even work here?! Someone? Anyone? I need help!" That nurse rushed out to help her. Your dad and I were a little frustrated then but understood when we heard the woman had her baby just an hour later!

The cherry on top was when Dr. S arrived to check my dilation and remarked that I was only open "a lady's pinky finger". She told me that we should start pitocin to hurry along labor because my water had already broken.

They moved us to the delivery room and a new nurse came in at the shift change.  She seemed seasoned and steadfast, which brought me some comfort. I changed into a hospital gown and she hooked me up to an IV that started a drip of pitocin. Almost immediately the contractions intensified and I looked for a trash bin because I thought I would throw up. They turned down the amount because it seemed that my body was very sensitive to the drug.

From 6am-2pm things were pretty consistent. My contractions were still every five minutes but came in doubles (called coupling) as a result of you facing up instead of down, though we wouldn't find that out until later. Nurses buzzed in and out to check on me and to make sure things were progressing. In my birth plan, I wanted to sit in the tub but that wasn't recommended with an IV. I also wanted to try squatting but your heart rate decelerated a little when I got into that position so that was a "no go" there. I mostly sat on the bed or in the rocking chair listening to the Massive Attack Pandora station and doing my best impression of a Zen woman in labor.

Your dad was attentive, caring, and I am sure, a little bored. He paced back and forth in the large delivery room. I could sense his nervous energy and hear his footsteps. "Sweetie," he asked kindly, "is there anything I can do?"
"Um, stop pacing?"
Haha, your poor dad.

Around lunch time, your dad got very hungry but he felt bad about leaving me. I told him not to worry and to get some food but not to get anything that had a strong smell if he was going to come back to the room with it. During labor, I was not allowed to eat on the chance that I would need a c-section. Food plus surgery is not so good. Needless to say, I was hungry and when your dad walked in the room with a to-go container of chicken fingers my stomach grumbled. Being pregnant amplifies the sense of smell and for a while, that smell was overwhelming! He ate around the corner near the hallway door and tried to waft the smell away from me.

Shortly after lunchtime, I asked for a little pain relief because I was so exhausted and the double contractions were taking a lot out of me. Part of my birth plan was to try to go without any pain meds so I felt guilty but the nurse immediately squashed that guilt and told me I was doing very well. They administered a shot that would take the edge off the pain and would only be in my system for two hours. While it didn't do a lot for the pain, it did make me sleepy and I was able to snooze for a few minutes between each contraction.

Sometime earlier that morning, Dr. S had finished her shift and Dr. M took over. He visited me a few times, left for lunch, and then came back. He watched as I worked my way through a contraction. I rocked quickly back and forth in the rocking chair, eyes closed, imagining my cervix opening like a flower, and breathing out in long breaths through pursed lips. He said I was a natural and that made me feel good and strong (even if he does say it to all the laboring ladies).

2pm. Dr. M checked how things were progressing. You were still sunny side up but I was more dilated so the doc said to push a little with each contraction if I felt the urge. This is where things started happening quickly. A few times, when I pushed, your heart decelerated a little so they began to set things up for a "just in case" c-section if you wouldn't rotate. I didn't want this at all so I did my best to remember what helped turn a baby from some of the birthing books I had read.

I went to my knees with my arms resting on the upright part of the hospital bed. This is when a student (teaching hospital) came in and tried to take my blood. Since my arms were up, there was not much blood to veins near the crease of my elbow. The student tried a couple times before my husband interjected and had them bring one of my arms down. I was a little distracted with the quickening contractions so I just did whatever they asked.

After they got the blood, I turned on my left side to rest a bit and then flipped back to sitting when it was time to check your positioning again. You had turned! Once you were facing down, my body knew what do do and you started crowning quickly. This burned a little but mostly, it felt like you were stuck. Dr. M had me put my feet up in the stirrups, handed me a mirror, and had me look at the top of your head. Wow.

Your dad stood at the top of the bed near my side and helped me count when I pushed. I was having trouble finding the right way to push because I had been letting my breath out the whole labor and now had to hold my breath. Dr. M placed his hand where I should focus the pressure of my pushes. By then my whole concept of modesty had gone out the window so I voiced my thoughts openly, "It feels like my butthole is going to explode!" Yeah, I said that. This is the beauty of birth, kid.

As your head was closer to coming out, Dr. M offered the mirror again saying that your head was petite and I shouldn't tear. I said no thank you this time. I just wanted to get through this part! The contractions came closer and closer together and I quietly did my best to push the right way, my face red and cheeks puffed out as I held my breath. Then I screamed.

Apparently, you had your fist by your face, just as we had seen in many ultrasound pictures, and as your head emerged, so did your fist. Ouch! One more push and the rest of your body was out. Dr. M picked you up by one arm and one leg, you gave a cry, and then he flopped you on my tummy.

You were born on Wednesday, June 10th, 2015, at 3:53pm, 7lbs 7oz, 19.5" after 12 hours of labor and 30 minutes of pushing.



And there you were - a little blueish-purple but pinking up quickly, covered in patches of white vernix, forehead wrinkled and eyelids puffy from squeezing through, and deep, navy blue eyes that connected with mine instantly. I smiled at you, said hello and that it was nice to meet you, gently touched your cheeks, and stroked your matted hair. I noticed the diamond shaped, chocolate colored birthmark under your right ear and giggled as I saw that you still had a little peach fuzz hair on your bottom and lower back. Your nose was an adorable squished button and your lips were small and doll-like. I studied your tiny hands and fingernails with amazement. I already loved you before I got to see your face but holding you in my arms just amplified that love.



The second you were out, I was flooded with relief and joy. My body relaxed and I took comfort in the sight of you: alive, healthy, and beautiful on my chest. I placed you near my breast to see if you would latch and you did! I was grateful for the distraction of you because what was going on below was not as pleasant. The placenta had to come out with some exterior squishing of my tummy and all the parts you had split while coming out, both up and down, had to be sewn back together after some numbing shots.

After Dr. M stitched me back together, he examined the placenta to make sure it was all there (a mom can get pretty sick if any is left behind). "Um," he paused, "Was there anything different about your placenta during your pregnancy?" We told them about the vasa previa that had been ruled out but with his questioning, I knew he had found something. "It's there, isn't it?" And indeed it was. Had the membrane ruptured just a half inch from where you exited, we would have had a very different day and outcome.

Clear vasa previa
We were all very relieved but I couldn't help but get chills thinking about what could have happened. If the diagnosis had been positively confirmed at the high risk ultrasound, I would have been on hospital bed rest from week 30 and have had you through c-section around week 35. Because you were there, all safe and sound, the placenta was fascinating both to us and to Dr. M. He asked if he could take it and show some of the students. We agreed and he paraded down the hall with my placenta. He took photos and sent them to me later. So crazy. Thank you for being alive, little one, and for coming out just in the right place!

Photo by Naomi Walsh

Photo by Naomi Walsh
The rest of our time in the hospital was a blur of kind nurses coming in and out, awesome friends and family visiting and celebrating with us, your first bath, hearing tests, figuring out nursing, and diaper changes. I remember feeling so happy but exhausted and a little lost at times. This was a completely new life we were beginning together and I was learning how to care for you to the best of my abilities. Your dad was very supportive and held you with pride and tenderness. He was a champ at changing your diaper and swaddling you (even though we soon learned at home that you hated being swaddled and had escape artist arms). He slept in the room with me at the hospital even though it was difficult for him to get comfortable and we had nurses popping in to check on us at least every two hours.

Your daddy loves you so much!
Pineapple boxers and hospital guest accommodations

Your dad is an amazing guy. He also rocks at making sure you are safe and sound in the car seat - just ask him sometime about how he kicked butt in baby class.


Such a tiny peanut; all safe and sound

I think I will have to write you a whole other letter about your first year with us! You have filled our hearts with a joy that we didn't know existed before you were in our life. After years of struggling to have a baby at all, you are an answer to prayers and a blessing to be with every day. I have really enjoyed remembering when you were born. We love you so much. Happy birthday, little squish, heart of my heart, Ellie, lil' E, little lady, Eliana!

Love,
Your Mama


One day old.


One year old. 
Sweet and curious.

Great sense of humor!







Wednesday, June 8, 2016

Fibromyalgia Diagnosis

The Diagnosis

In my post about frustrations with my body after pregnancy, I shared this chart that I had created to try to explain my pains to my doctors.




I still have endometriosis and I knew how those pains felt but this was much more. Parts of me felt bruised or sprained, my whole body ached like I had the flu, my jaw clicked, and I was exhausted beyond the normal fatigue of a mom, wife, and small business woman. I had IBS symptoms most days and skin rashes that popped up, most recently one on my face and that caused some self esteem issues. There were parts of my body that were tender and sore or shot bolts of pain when bumped. Some nights I tossed and turned because every position was uncomfortable and I couldn't even rest my knees together when laying on my side because that caused discomfort.

Bouncing around between multiple doctors, getting blood draws and x-rays so much that the insurance company called to ask if I had been in an accident, I finally got an official diagnosis from a rheumatologist. Before the exam, the nurse called and asked me pre-appointment questions. After the quiz, she told me that it had been a quiz to screen for possibility of fibromyalgia. After my appointment with the rheumatologist, that diagnosis was confirmed - on April Fool's Day. Nice joke, body :/.



Though I had been dealing with these pains for a while, having the official diagnosis was both freeing and upsetting all at once. I allowed myself a little pity party but then picked myself up and started researching the disease and what I could do about it.

Mayo Clinic Disease Definition:
"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable syndrome, anxiety, and depression.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation, and stress-reduction measures also may help."

I grabbed these graphics from Pinterest to simplify but you can also check out this WebMD slideshow. This Doctor Oz series was also helpful in summarizing the disease.



The rheumatologist also sent me a packet explaining fibromyalgia and the common symptoms. As I read through it, I thought, "Yep, that's me, and that's me, and that's me, too". My body was such a mess of symptoms that it was difficult to explain, but this diagnosis brought most everything under the umbrella of fibromyalgia or endometriosis.

Having this diagnosis has brought me a lot of peace mentally. I now can confirm:
It was not in my head.
I am not crazy.
I am not lazy.
I am not weak or overly sensitive.

---

So, what's next?

Fibromyalgia is a chronic illness of the central nervous system so it is not just going to go away, but there are things I can do to improve my quality of life.

Medication
Antidepressants are often prescribed even if the patient is not depressed because antidepressants can be helpful in relieving fibromyalgia pain and improving deep, restorative sleep. They work by balancing serotonin and other brain chemicals involved in pain processing. Currently, Lyrica, Savella, and Cymbalta are the most prescribed to help with fibromyalgia. My gynecologist also told me about LDN or low dose naltrexone which helps reset the brain at night. A lot of these medications are not recommended to use while breastfeeding but I was put on a low dose anti-depressant that is safer with nursing and will look into stronger medication options once Eliana decides to wean. Until then, I am concentrating on other coping mechanisms and lifestyle changes.

Exercise
Though it often hurts to move, it hurts even more to not move. Inactivity can cause even more pain and tenderness so it is important for me to get moving every day. With fibromyalgia, stress can trigger a flare so it is a good idea to find a balance. Though it's not helpful for me to do high impact exercises, I have been taking a one hour weight lifting class 2-3 times a week and going on fast paced stroller walks in my neighborhood 3-4 days a week. I still need to work in some yoga, swimming, and tai-chi type exercises.

Pump it up!

My strolling buddies.

Diet


Search ResultDiet

It has not been proven that certain foods can adversely affect a person with fibro, but it has been shown that those who keep a healthy/fresh food diet do have less severe symptoms. I already have this down for the most part because of my food awareness from endometriosis. I need to keep up my intake of fresh produce and it'll be a little easier now because my Community Supported Agriculture (CSA) has begun. Yay local veggies!

Mindfulness/Meditation/Prayer
Mindfulness is often recommended to people who deal with chronic pain. It is a way of rewiring how your mind reacts to painful stimuli. I have begun reading the book, You Are Not Your Pain by Vidyamala Burch and Danny Penman and soon in will start taking me through meditations on CD. I am excited so see how this, along with prayer, can help.

Sleep
This is a tricky one! Many that live with fibro have issues with non-restorative sleep. I am in that same unrestful boat. A sleep study was done a while ago and it was found that I have insomnia, restless leg syndrome, and that I have active/awake brain waves during my deep sleep cycle. This means that even if I am in bed for 10 hours, I can wake up exhausted without having had my body and mind healed during sleep. This is also tricky because I am a mommy of an almost one year old and when she doesn't sleep, neither do I.

My docs have recommended trying to find ways to make getting to sleep easier - things like no caffeine in the afternoon and no screen time an hour before bed. They also said that I might have to take more rests or naps during the day. This is not an easy thing to work into an already busy schedule - which brings me to the next point.

Simplifying Life

This may be one of the most emotionally complex changes I need to make. I like to make people happy, to work dependably and with quality, to pursue many artistic ventures, to support friends and family and make it to their events, to be strong and consistent. My schedule has always been a full one, even before my daughter came along, and trying to balance it all was extremely challenging, but I did my best to manage as gracefully as possible. Adding two chronic illnesses to the mix that each come with pain and exhaustion tipped that precarious balance and something had to give.

Recently, during one of the evening power strolls with my husband, I brought up what weighed heavy on my mind: priorities. What are the things in our life that take precedence? Our family and health came to the forefront of the conversation. Such a full schedule does not allow time for the self care that is necessary for me and having an unpredictable week and weekend schedule puts stress both on my body and our family. Since the birth of Eliana, my husband and I have been struggling to find time together and having me work weekends makes that even more difficult.

It turns out that the thing that has to give right now is my face painting work. Ask any professional face painter - the job is much more extensive than the time put in at the parties. The hours spent communicating with customers, learning the craft, preparing and cleaning the tools and products, and designing option boards all add up. The time painting is not the easiest on the body either. There are a lot of unnatural positions you put yourself in when trying to paint a moving/squirmy target.

Deciding to respectfully bow out of face painting is a very difficult decision. I adore the artistry, the amazing people I get to work with, and all the smiles I get to see. I have been painting faces for 10 years and it feels strange to stop but it is what needs to happen to create the kind of life environment that will be beneficial to both my family and my health. I will continue to create art and do illustrations and some graphic design, but these are things that can be done from home as well as scheduled around health and family needs. Once I publicly announce this, I will begin to change my web site, business cards, and social accounts to reflect the change. I have a few more gigs booked this summer that I will work but after that, I'll lovingly send customers to my fellow face paint artist friends.

---

What can I do?

Some of my friends who know about my illnesses have asked how they could help and that is so very kind. Thank you! Right now, there is not much I need but I will let you know if I do. The best things for me from friends and family would be patience, grace, and understanding. To assist with that, there are a few things that I would like for you to know:

• I enjoy my life and I am happy even though my body is not so great.
• If I am having a rough day, I may seem distracted or foggy headed. Please have patience with me.
• You can generally not tell I am sick from the outside but the discomfort is there almost constantly.
• I still am doing my best to enjoy every day and will work through pain; I'll smile and try to act like my usual self.
• I am still figuring all of this out but I am thinking positively and I am grateful for kindness and support.

Writing all this out has been a great way to process everything. Thank you so much for reading!