That Time My Husband Almost Died

If I hadn't taken him into the ER and he had gone to bed that night, he wouldn't have woken up the next morning. But it wasn't the first time we had tried to get help, this was actually the SIXTH. 

Let's start at the beginning - but first a few things:

•Writing this is part healing for me and part reminder
for you to advocate for yourself and the ones you love!

•I am so grateful that Mark IS alive and for the nurses
and doctors who took action to make that possible. 

•Our crew - friends and family - SHOWED UP!
We were taken aback and so humbled by the response and support. Thank you.

Now to the story - 

Once upon a mild April day in 2017...

Mark's last healthy day before the illness

The day before Mark got sick was such a beautiful day. Mark, Eliana (then not quite 2 years old), and I played in the playground after church and then met some of my family at our house for lunch and a nature walk down the path to the pond near our house. The wind was soft, the sun was gentle, and we all smiled as Eliana giggled at the ducks. We had no concept of the trauma ahead. 

Mark woke up at 4am shaking with a headache, fever, and chills, teeth literally chattering.

I got out some medicine for him and we all went back to sleep.

The next day was worse. Mark stayed in bed for 18+ hours, alternating between shivering under all the blankets he could find and drenching his sheets with sweat. The headache never ceased.

Mark agreed to go to Urgent Care, a sure sign he felt very poorly because he is one that avoids even taking Dayquil. The Physicians Assistant gave him a quick exam (looked in his eyes, nose, ears, etc.), told him he probably just had a cold and that it would pass, and that she couldn't do anything for him. He came home and went back to sleep, continuing to feel awful.

Two more days of this, worsening each day, and Mark went back to Urgent Care. The same P.A. walked in saying, "I don't know why you are here". Mark knew something was not right, and this person would not even take the time to look into it or treat him with an ounce of empathy. A quickly-administered neurological test (touch your nose, push your leg against my arm, etc.) and Mark came home feeling very discouraged.  By this time, the fever and headaches had worsened and he was beginning to lose vision (occipital migraines) and see things.

The next day was even worse and it was hard for Mark to keep hydrated with the fever and sweats. He was resting on the couch and I checked if he needed anything before I took a shower. I got out of the shower a little later and could hear him calling for me with a raspy voice. He was so thirsty but exhausted and had been calling for a while for me to get him some water. He was miserable and I knew it was time to consider the ER. After calling our insurance's nurse hotline and going through his symptoms, they said it would be a good idea to get him checked. 

 We arrived and once a room was available, we went in and Mark was checked out. They gave him some over the counter medicine for his headache and then put him on a drip to replenish his fluids. The ER doctor that night ordered a flu swab (yep, that one that feels like they are going all the way up your nose into your brain), convinced that Mark had influenza even though he had had no nasal symptoms. While that was checked, Mark received THREE total bags of IV fluids. That's how dehydrated he was. Being re-hydrated made him feel a little better but he was still experiencing fever whenever the fever-reducing medication wore off. They also ran a few ultrasound tests on internal organs (liver, kindeys, etc.), which looked normal.  The swab came back negative for flu but the doctor still thought that's what it was and sent us home with a prescription for a generic antibiotic (Z-Pack).

Mark continued to repeat the fever/chills cycle and the pain in his head remained debilitating. He was still exhausted. He slept a lot and when he was up, he sat in his chair under a blanket. He didn't want to get our daughter sick so Eliana and I played together and tried to give him rest and space. 

Mark was told to follow up with his primary physician after the ER visit if the symptoms continued, but he didn't have one because he was rarely sick. We checked around to see who had space for a new patient and could see Mark quickly. The doctor was kind and good-natured. He listened to Mark, examined him, and ordered some bloodwork. Mark went back two days later because he was still sick and his head was hurting even more. The doctor was starting to follow the idea that something was wrong with Mark's liver because it was puffy and his iron counts were off. The tests had also shown a higher level of white blood cells which can be caused by infection.

Friday night came again and it had been a week since our last ER trip. I took our daughter to Mark's parents and then came back home. I could tell he felt horrible and I was really worried about him. His head hurt so badly and he was so miserable that one time he yelled that he would rather die than continue to feel like this. I called the nurse's line again after taking his temperature of 105F and I decided to take him into the ER again.

The police officer at the ER convinced Mark to sit down in a wheelchair because he looked like he was about to fall over. Once we got into a room, they got him hooked up to fluids again and examined him. His fever had gone down a little with medication and he was still able to stand and talk and joke a little. They decided to do a lumbar puncture as the next step to take because they didn't know what was wrong. Mark got up, went to the bathroom, and then they did the test. The spinal fluid came out pretty clear so it didn't look like anything was terribly wrong at first glance, but they sent it back for tests while we waited. They did warn us that a side effect of the LP was a headache and to have him lay down if that happened.

 The headache came on strong and painful and Mark began to get nauseous. I found a puke bag and he threw up twice. He said this was the worse the pain has been yet. I called for a nurse one came in with a mask on. The tests had come back positive for meningitis (and were still being processed for viral or bacterial). They gave him antibiotics immediately and a shot of morphine for the pain and that seemed to quiet his groans of pain for a bit. But then he stopped answering questions. We thought maybe because it was because of sensitivity to the painkiller at first. They started to transfer us to a room in the ICU and he was still not answering questions but he had started to moan. 

Once we were in the ICU, the lead doctor there was surprised to hear that Mark had been walking around just an hour before. She also said that the painkiller should have worn off by now, he should have been able to talk, and that this might be the "worse before better" phase. That's when I felt the floor drop out from under me.

By then it was almost midnight. I was keeping Mark's parents in the loop and tried my best to explain, without panicking, that it was pretty serious and mentioned the worse before the better stage. I told them I would stay with him overnight and they planned to come up early the next morning so I could go home for a bit.

An ICU nurse chose to care for him (apparently ICU nurses have a certain amount of flexibility and can choose their next case) and asked how I was doing after checking on Mark. Honestly, I didn't know. I hadn't thought about my needs because I was so worried about him. She got me some Sprite and crackers from the nurse's station and offered to find a bed I could sleep in. I was grateful for her kindness but just wanted to stay by my husband.

He was in and out of consciousness and when awake, he still couldn't speak a coherent word, only groans and sounds. He pulled at his IV lines and his catheter, and then became hot and started pulling off his hospital gown. The rule is that patients must keep their gown on but Mark resisted so much that the nurse allowed for him to take it off as long as he kept the sheet on his lower half. Mark tried to get out of bed a few times after that and I had to try to talk to him, explaining he was naked and needed to stay, and I had to physically restrain him a few times while calling for help. He kept making faces as if thirsty so they allowed me to give in water in a small sponge from a cup of ice water. He grabbed it from me once because he was so thirsty and got most of it in his mouth while spilling the rest. It was so strange to see him this way as he was unable to process or communicate but his brain and body were continuing to kind of function. Each time the nurse came in she would ask him the same questions and it seemed as if he tried to answer her but the words were just gibberish. One answer was pretty clear to me though when the nurse asked how he was doing and he answered, "shibbly".

Mark's parents came in the morning and I went home for a shower and a few hours of sleep. Mark was still not speaking clearly when I left so I really didn't know what was going to happen. I fell asleep wondering how he was really feeling/thinking, if this was going to be his permanent cognitive state, and what the coming days would bring. When I woke up, I checked in. Mark's sister had joined their parents at the hospital and they reported that Mark had recognized his dad's voice and answered, "that's my dad" when the nurse asked if he knew who it was. Over the course of the late afternoon and evening, much to our relief, he became more responsive between drifting in and out of sleep. By that night, I was able to have a pretty normal conversation with him, responses only slightly delayed.

The official diagnosis came back as bacterial meningitis which had spread to infect his lungs, heart, brain, and blood, causing sepsis. They switched to an antibiotic more specific to this bacterial strain and it worked quickly. He still felt pretty horrible but the pain in his head had started to dissipate and the fever and chills were under control. The next morning, Mark was moved to a regular hospital floor and the plan was to spend another night and then continue the antibiotics at home. But then a nurse noticed something strange about his heartbeat.

The nurse heard an irregularity and ordered an EKG. This showed that his heart skipped a beat here and there. They looked into it further and found that there were spots of infection on the mitral valve of his heart and part had been 'eaten' away by the bacteria. Blood was not flowing properly because the one-way valve was allowing blood to flow in both directions.  This was the reason for his latest symptom - extreme exhaustion. This is not something that could be left alone for risk of a heart attack or stroke. The problem was that he was on blood thinners to reduce the risk of blood clots but to have surgery for his heart, he would have to come off the blood thinners. It was a catch 22 between waiting long enough for the antibiotics to do their work on his body and the cysts in his brain and not waiting too long for the surgery in case his heart failed. New plan: try to let the antibiotics work for a few more days and schedule the surgery and hope that nothing extremely bad happened in between. 

During this time, Mark's family, my mom, and I created a rotating schedule. I would have breakfast with Eliana and then would go to the hospital to be with Mark. In the late afternoon, I would pick up Eliana from my mom's or come home and switch with Mark's parents so they could visit him while I put Eliana to bed. It was good for someone to be there with Mark - to advocate for his care, keep track of the medical plan, and to keep him company. While I was there, I also organized friends visiting or bringing meals while keeping friends and family updated. I brought in a series of little watercolor paintings I was doing to keep my hands busy and to ease my anxiety.

In those days of waiting, Mark started having pain in his left calf. It kept getting a little more painful each day but the doctors were concentrating on the upcoming surgery and thought it might just be muscle wasting from being in bed at home and at the hospital for so long. We come back around to this later.

The morning of the surgery came along with a strange vertigo/elevator-moving feeling. I was doing my best to be calm and collected, but my body was showing signs of worry - sores on my hands, dizziness, and water retention. Early in the morning, we gathered in Mark's room to collect his things (the recovery room would be in a different area of the hospital) and then met him in the pre-op room and prayed for him. Then it was time to wait. Everyone deals with worry differently - some need to pace back and forth, some need to talk it out, some need quiet and space. To keep calm, the best I could do for me was to sit quietly and paint.

We got word halfway through that the damage was worse than expected and the whole valve needed to be replaced after they cut away some of the damaged tissue around it. A couple of hours later, we were asked to step into a small room to wait for the surgeon to come to talk to us. The private room made me a bit nervous as sometimes that can mean news you don't want to hear but it was just Mark's surgeon personally explaining to us what they found, how they repaired it, and how Mark was doing. They said his heart had started back up but was very slow so he had been put on a temporary pacemaker.

Surgeon explaining how the bacteria had created 'vegetations' on Mark's mitral valve

Mitral Valve Illustration

We had to wait a little longer for Mark to be transferred to his new room in the ICU. I was happy to see that the nurse we had the very first night in the hospital had asked to be on Mark's care team again! The team warned us that he might look very puffy and pale because of all the liquids and the fact that he had been on bypass during the surgery. We were allowed to see him one by one as he was slowly waking up.

I walked in and he did look different. He was on a ventilator and had a tangle of IVs coming out of the artery in his neck. He had multiple large drainage tubes that came from his abdomen. His skin was pasty and puffy as they had warned. My first feelings, though, were gratefulness that he was alive and then a huge wash of empathy coupled with the kind of tingling I feel in my body when I see someone in pain.

When I spoke to him, he opened his eyes and he knew me and acknowledged me. Whew. But I could tell that as his mind was waking up, that he was very aware of and very uncomfortable with the intubation tube. He asked for a piece of paper to communicate and slantily scribbled that he needed the tube out now. He was gagging on it. He also scribbled that his body was crooked and then corrected the grammar of the nurse. Oh yes, his humor was still there.

Eventually, the tube was taken out and Mark shared that it was probably one of the worst things for him, even after all he had been through. He was very thirsty but fluids were limited. I was able to feed him only a few ice-chips an hour. It got later and his family went home to rest; I decided to stay there overnight with him. This time I accepted the offer of a bed and would sleep for a little, then spend a few hours with him, then rest again. I had such strange and scary dreams while trying to sleep that I gave up in the early morning and sat next to him.

A little while later, the nurses came in to get Mark moving a little. The first move was to sit up and get to a chair. He got pretty nauseous when moving, mind you that his chest had recently split open and there were still drainage tubes sticking out of his upper abdomen, and he threw up a little. His leg had continued to worsen so he limped to the chair and had a stool top prob up the sore leg. He would wince in pain when anyone touched it.

His parents and sister came in the morning and I went home to get some rest and spend some time with kiddo. By the time I returned in the afternoon, I heard Mark was going on walks! I rushed to catch up and take a picture of this. Proud wife moment! He was putting on a brave face though because he was limping and said that his leg had not gotten any better.

Mark got moved to a cardiac step-down floor and there was talk about timing for discharging him. A PIC line was installed so that we could continue to administer the twice-daily antibiotics at home. We knew that something wasn't right with his leg, though, as it had continued to worsen post open heart surgery. A physical therapist, who had been working with Mark on different strengthening/stretching exercises, went back to his care team and insisted they take another look at his leg  At this point, he could no longer put weight on it. Another scan was done, this time to check the arteries.  A previous scan had been done of his veins (they had been thinking deep vein thrombosis).  Scanning the arteries revealed Mark had a complete blockage in his left popliteal artery! In a surprising break from the bad luck we'd had so far, Mark had three extra arteries that branched off above the blockage that provided enough collateral bloodflow that his leg remained alive during those eight days of blockage.  Normally, he would have already lost his foot but because of his years of weight lifting, running, etc., he had grown extra paths of blood flow to his lower leg. It wasn't quite as much oxygen as the muscles/tissues needed and some of the muscle tissue had been without oxygen.

Not Mark's leg (just an example)

Usually, another surgery right after open heart surgery is not recommended but, unfortunately, that is what Mark needed. They scheduled the surgery and poor Mark had to wait in the hospital longer. He wanted to go home so badly. He still hadn't seen Eliana in person (he didn't want her to see him like this in the hospital or get exposed to hospital illnesses) and it had been over two weeks, plus the previous two weeks he'd spent at home where he was so sick he hadn't really gotten to see her. We tried FaceTiming with her and I know it was both good and hard for him to see her on the screen and hear her little voice.

The day of the second surgery was here and the whole family came again. Mark was ready and was hoping to have a lot of relief after they removed the blockage. The surgery turned out to be more difficult than expected because it wasn't a clot, but another vegetation caused by the meningitis. This caused the escalation to a different surgical team who would need to remove the vegetation in a more invasive surgical manner.

They didn't alert him to the fact that sometimes, the pain after removing that kind of blockage is even worse as blood is finally able to reach the oxygen-starved tissue again. Mark came out of surgery writhing in pain, loopy from anesthesia and the pain medications, and clinging onto the guard rail of his bed. After open heart surgery, you are supposed to keep your chest stable and flat, but he was folded in half and refused to lay on his back.

I was eventually able to get him to sip some chocolate milk (he hadn't eaten since the night before) and he came to a little and repositioned himself better. He talked to me about the pain and how it was so intense. The nurses gave more pain medication and we all let him rest.

As Mark recovered, he was itching to go home but his heart was doing some acrobatics and put itself into an atrial flutter. They kept him for another night to monitor him. The next day, when a friend visited, brought him lunch, and asked him how he was doing, Mark broke down and wept, saying he just wanted to go home. He had been in survival mode the whole time in the hospital and hadn't given himself time to process emotion. It had been three weeks, and he was just done.

Hearing Mark gets to go home!

Eventually, Mark got to go home. Many complications were to follow (like needing a cardioversion to put his heart back into normal sinus rhythm, two permanent sutures in the mechanical mitral valve not holding, and various challenges with the antibiotics and the blood thinners) but he got to go home and see Eliana for the first time in three weeks!

Reuniting and sharing a chicken tender  

The cats missed Mark, too.

So happy to have daddy home!

There could be a whole other post about all Mark and our family went through in these two years since, and how complications and challenges are still very present but I am just grateful for this outlet to share our experiences. Telling the story (and painting it out) has helped me process.

Thank you for reading!

Take care, 

Christy

If you're curious about what I painted during this experience, please check out my 100 Days of Scribble Sketch book.

Excerpts from a fibro life + current self care techniques.

Flare Splice, Christy Grace, watercolor, 2017

As usual, it has been a while since I have written. Not for lack of ideas or inspiration but for the normal wonky balance of family, health, life, and work. I wanted to give a little update, write out some of the thoughts I have been processing, and share some of my self care routine.

Note - this blog is my own experiences and is not a substitute for professional health advice or care. I am a tough lady so this is not meant to garner pity, but to share my life and work through things by writing them out.

In April 2016, I was diagnosed with fibromyalgia after struggling with pain that was more than what I was used to while being a mommy with endometriosis. Trying to be a good mom, wife, friend, artist, and more, all while living with two chronic painful and exhausting diseases was proving to be very difficult so I talked to my husband Mark and we decided together that something needed to change. I had to prioritize family and health first.

So, I stepped back from a lot of work and social events that took me out of the house. I needed to set up life so I could back up from things a little when pain and exhaustion flared and not be a huge imposition to anyone. As instructed by multiple doctors, I had to reduce the stress in my life, allow for rest, and make time for self care.

I still wrestle with the guilt and internal dissonance of not being the person I was or the person I thought I would be at this time in my life. I can not be as social or push myself professionally in the same way I have in the past and it is easy for me to slip into feeling like a failure or feel that I am missing out. To get through this, I have to recreate expectations for myself and reform the vision of who I really am and want to be when everything is stripped down. (More of this in the next blog entry.)

Since being officially diagnosed, it has been a weight off of my mind to know that it is not all in my head. It still proves difficult to explain the illness and to not feel ashamed because it is an invisible illness - I don't look sick. With endometriosis, at least I can display the pictures from the surgeries that show all my reproductive organs plus bowels twisted together with adhesions and cysts. With fibromyalgia, there is no way to show others that almost all stimuli is magnified and that this is painful, exhausting, and overwhelming.

Some friends have wanted to know more and I really, truly appreciate that. They wonder how it feels and it is different for each person but I wanted to put together an attempt to explain what's going on inside - a little look into how fibromyalgia personally affects me daily.

Excerpts From a Fibro Life

Can't fall asleep...can't fall asleep...mind is running laps and my hip aches. I can't touch my knees together because the pressure feels like a bruise. Turn over. Gah, my socks feel too tight. Get these things off me! Ok, a little better. Starting to drift off... "Mama! Mama! Up!" 12:45am. Toddler is up. Let's do this kiddo.
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Finally, I get a few solid hours but the morning comes too soon. As found in a sleep study, I have "awake" brain waves during what should be my deep sleep. My body is not healing itself properly at night and even if I do get a solid 8+ (minus a wakeup from the kid) I am not well rested.
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In the morning, I put my feet on the floor and it feels like someone had run them over with a truck while I was sleeping. My knees ache and I feel like a rusted tin woman. My body drags as it is full of sand, weighing down every step and making each action more of an effort. But there she is, Eliana with that sweet grinning face and wild, sleep-tousled hair and I smile and pull her little body to my chest for a hug.
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Time to get going to music with Eliana! My back aches as I chase her around with her jacket then wrangle her into her car seat. Before we get going, I check the mirror to see if my eyes look as tired as they feel. As I drive, I almost call out in pain when suddenly it feels as though my fingers and palms are being bitten by fire ants. I look at my palms and they are normal. What the...?! I hold the steering wheel a little looser and bite my lip, chewing at the skin. Music is fun as usual though I inwardly sigh in relief when there are more quiet parts of the class when I can rest. I speak with a fellow mom while getting packed to leave and as I talk, I feel the fog roll in. I can't remember a simple word and stumble through the conversation, my eyes tearing up and my cheeks burning with embarrassment. If this was just a one time thing, I would push it off as "mama brain" but it happens all the time and it scares me.
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After music, Eliana goes to Grandma's house. We hire her for chunks of time during the week so that I can work from home, get chores and errands done, and get to the gym. I think during this stage of motherhood, most mothers would agree that you wish for a second to get things done without the kid around but the second you are away from them, your heart aches. Anyhow, as I wave goodbye to her from the car as I leave, my stomach starts to twist. This is the IBS (irritable bowel syndrome) fun that visits almost every day, sometimes multiple times in a day. I rush home clenching. It may be because of endometriosis adhesions or scar tissue from adhesion removal but each trip to the bathroom is an event and hurts. Ugh.
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After lunch, it is time to work but most of the time my body is telling me to crawl back into bed. Sometimes I do but I tend to be stubborn; "NO NAP!". I sit in my studio at my desk and get to it. I create new art, I edit recent work for apparel sites or prints, I get crafty by making magnets and necklaces out of my art for small shows, and sometimes I do some commissioned art or design work. Creating, drinking tea, and listening to music is one of my "happy places". There are days when creativity flows and I am on top of things and others where I can't keep my thoughts straight, my head and whole body aches, I yawn and stretch and twist trying to relieve that unrelenting pain. On rough days I will sometimes take a bath or nap but choosing to do those things means dealing with the inevitable guilt of not being productive.
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By the time it gets to be near time to leave for a weight lifting class at the gym, I am dragging; but I know that though it hurts to work out, it hurts even more if I don't. I do my best to keep up and be strong. I do a few of the exercises with body weight or with lighter weights to minimize pain but otherwise I try to push where it is possible. Sometimes the bar feels like it is ripping the skin off my palms. Sometimes pushing anything above my head sends jolts of pain through my neck and shoulders. Sometimes a squat makes my hips feel like they are splitting apart.  Sometimes a lunge triggers shooting pain and strange sensations in the numb part of my right quad. Once the class is finished, though, I feel empowered and successful. The endorphins help, too.
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I hop from the gym to pick up my little one. She is glad to see me and tells me by dancing around and singing "happy, happy, happy!". My heart explodes, of course. She follows this by smiling at me and saying "Up!"; I pick her up and hold her close. We push our foreheads together and I tell her "I love you, I've missed you, and I'm so happy to see you". Though my body still aches, moment like this help me reprioritize my thoughts. I want to give her the best of me.
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By the time the day is done and the little one is bed, I am so tired but also would just like a second to relax and talk with my husband a bit. I ask for a hug and he holds me tight but it feels like his fingers are bruising my skin so I step back. I feel bad that my body is so sensitive and he feels bad that his touch hurt me. So frustrating.
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Most days of the week are similar variations. The weekend hits and I am excited to spend time with my family but also a little nervous because chasing a toddler all day can be just as exhausting as rewarding. Luckily, my husband parents with me and he has a lot more energy. He notices when I am wearing out and takes a turn chasing her around while I have a cup of tea or a bath.
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Sundays: we have church and Mark and I are on the worship team. He plays guitar and I play bass and sing. Though I love being a part of the music and I don't want to stop, some of the experience can be personally stressful. Sometimes the bass feels so heavy and the strap digs into my collarbone, which is one of my many tender points. I worry that I will forget the words or where we are in the song when the brain fog rolls in, and it has happened before. I get nervous about singing and when I lead a song it can feel like my throat is caught in a stranglehold and I worry whether any sound will come out. Sometimes I am having a good day and things are not so bad but if I am having a rough day, by the time we are in the car on the way home, I can feel the impending stress triggered headache. I have described this to my friend as a metal plate in the middle of my head pushing forward toward my eyes. There is a lot of pressure and tightness. If the headache is still around by the time I hit the gym in the afternoon, I try to relieve it between muscle groups by pushing my hands against my skull.

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So, as you can see, not a charmed life physically but if someone asks my how I am doing, I usually say "Life is wonderful but my body could be better". There are so many lovely parts of my life that I try to celebrate and focus on to be able to live with daily pain and keep my thoughts positive. Constant pain and exhaustion can take you to a dark place very quickly so I work hard to keep my head above water. I have slowly been adding and adapting self care routines to help with this.

Current Self Care Techniques

Moving my body -
I am still doing Body Pump three times a week as long as my stomach issues don't get in the way. I miss the nice weather and walks with Eliana so I had to find a way to replace those steps I was missing with the cold weather. My Fitbit has been helping me keep active. The little 'buzz' on my wrist once an hour reminds me to get up, stretch, and walk around. This is especially helpful when I am working because I get absorbed in a painting and don't move from my chair for four hours (which then makes my joints feel like they have rusted). I am trying to get 10,000 steps a day and will pace around the house after I get the babe down to sleep just to reach that goal or get near it.

Massage -

Getting a massage from another person has always made me nervous. Though I am sure it would feel great, I can't get past the idea of a stranger's hands on my body and wouldn't be able to relax. So instead I use tools to massage myself. My friend gave me a fascia massager after I mentioned doing research on how fascia could affect pain levels. I use this massager plus an octopus shaped massager (yay!) with avocado oil plus some essential oils. After I dry brush my skin, I warm up by using a space heater to add to the effects of the massage. When I started these massage sessions, it felt like I was punching my tender points and that pain would pulse long after I released the pressure. Though the pain is not gone, the massage has definitely helped reduce sensitivity. I sometimes follow up with an epsom salt bath to help draw out toxins released during the massage and I make sure to keep well hydrated.

Medication -
I am still nursing Eliana (if possible, nursing until age 2 is recommended now for toddler immune boosting and I was and am planning on letting her choose when she is ready to stop). This means that I can't take any strong medications but I am taking a low dose of an anti-depressant to help with pain and to assist in combatting the expected depression that people with chronic illnesses experience. I am also seeing my friend that is a homeopath. I love the way that she listens and approaches the body and illness holistically.

Soul care and small joys -
I pray, I worship, and I sit still and listen for God. I know meditation would be good for me, too. I have read the book You Are Not Your Pain about mindfulness and would like to start implementing those tools into my routine. Small joys are moments that are full of peace or a bliss that can momentarily distract or eclipse pain. I find these joys in times with my daughter and husband, when I create a new piece of art and it actually looks close to what was in my head, when I sit quietly reading and drinking tea, when I make someone smile or feel appreciated.

Still simplifying life -
Many times simplifying life means saying "no, thank you" or "sorry, I can't". There are so many good people with good ideas but when you are struggling to take care of your own stuff, it is not right to take more on and then drop all the plates that you are trying to spin. One of my little mantras currently is "gently set down that plate". Simple, yes, but a way of saying that it is okay to realize when things are too much and taking care of business well means letting someone else do that job. SO hard for me to do but as I set these plates down, I feel the tension start to release. My introvert self is grateful, too!

Letting it out -
And we've now come full circle. From experience, I have found that it is better to work through these complex and somewhat confusing bits of life. Write it out, paint it out, talk it out. It makes you and your illness feel not so invisible, which is cathartic in and of itself.

Thanks so much for reading!
Love, Christy

God Has Answered

A dear friend was asking about some of the spiritual things I went through during our journey to pregnancy so I started writing. I have trouble not telling a story in full, so it got a little long but I did my best to give a succinct recollection. <3 Thanks for reading!

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In 2011, Mark and I took a 'babymoon' - a trip together before trying to start our family. I was so ready. I drew and painted cute baby animals and researched all things baby. I excitedly told my Bible study friends that we were going to be trying and I prayed that my marriage with Mark would be strong and would grow during this process. I was full of hope and expectation.

Six months went by, nothing yet. I was a little concerned and went to visit the doctor. I was told that "these things can take time" and that I should not worry until a full year goes by. I noticed some physical pain creeping in but just thought it was because I was off birth control. I continued to pray and so did the women close to me as I tracked my cycles and researched as much as I could to help.

A year went by and I went back to the doctor. They did a painful test called an endometrial biopsy - pretty much a few hole punches inside the uterus to test the lining. That came back inconclusive and I was given the advice to keep trying and to try to not be stressed as that could be keeping me from getting pregnant. The painful periods continued but I did not think that was part of the problem yet. My friends still prayed.

Two more long years went by. I talked about it less and people asked if we were still trying. My prayers turned from asking for a baby to asking God to do show me what was meant for our family. Maybe I was not supposed to be a mother; maybe we were supposed to adopt; maybe our marriage wasn't ready for a baby; maybe there was something in my life I had to fix before I could conceive. I hurt a lot - emotionally, physically, and even a little spiritually.

I returned to the doctor because by then my physical pain could not be ignored. I almost fainted during work and was in pain or uncomfortable for at least three out of four weeks of each month. I had done some research and presented my doctor with the idea that I could have endometriosis. They had to do surgery to confirm and yep, there it was, stage 4 endometriosis with an unlikely chance of pregnancy.

Endometriosis is where the endometrial cells, the same ones that line the uterus and make a home for a baby, grow elsewhere in the body, usually in the abdominal cavity. They go through the same monthly process but when the lining sheds each month, the out of place cells have nowhere to go and end up causing inflammation, cysts, adhesions, and scarring.

The doctor found that my ovaries were surrounded by cysts and were adhered to my uterus which was also stuck to part of my bowels. No wonder I was in pain and no wonder I couldn't get pregnant! I had a second surgery to remove what they could while doing the best to leave the reproductive parts in good shape. During this time, I was surrounded in prayer more than ever. I was supported wonderfully by my friends, church family, and amazing husband. People prayed, brought food while I healed, and sent kind words.

The next stage was fertility treatments to help get me pregnant before the endometriosis grew back (there is no known cure). The trick was that some of the fertility medicines had hormones which made the endometriosis grow faster so it was a race to see what could win. We were told that we would have about three months to try before they may have to do surgery again. I had people praying, I talked about the process in Bible study, and I was full of hope!

The first month failed and I stopped being so open with the process. A negative was hard on Mark and me and telling people that had prayed so diligently for us that it didn't work was just as difficult.

The second month failed. So did the third. This was around four years since we had started trying. I was in a very dark place. I asked God for some kind of answer. Why would He create me with such a tender, nurturing heart and not fulfill my wish to be a mother?

We tried one more time.
Ta-da!
It worked!
AHH! WHAT?!

Mark and I were full of wonder and a little apprehension. Would it stay? Would the baby be healthy? Would the pregnancy go ok? I told a few people that new the timeline and asked for them to pray that everything go well. Once we passed the 12 week normal waiting time, we let people know and I felt God's love in the hugs, saw Him in the happy tears, and heard Him in the joyful exclamations.

Time passed and even though it was not an easy pregnancy, I did my best to take it in stride and to rejoice in the miracle of the baby every day. At 20 weeks, we learned it was a girl and I started searching for names. Mark told me to make a list of ones I liked so we would have somewhere to start. I went through web sites and apps alphabetically, writing down names and the meaning of the name. I got to the E's and found a lot that I liked but one stuck out more than the others. Eliana. The meaning is spot on, too -  'God has answered'. I thought it was perfect and it didn't take much convincing to get Mark on board.

The pregnancy continued to have its bumps in the road but on June 10th, 2015, Eliana made it out safely, even narrowly missing a possibly fatal complication at the end. Thank God for prayers of protection!

And then there she was, this little one so many had prayed for - this brand new person that I would have the chance to get to know, to protect, to nurture, to encourage, and to love. The first few weeks it didn't feel real. I would stare at her sweet, squishy face with disbelief.  My heart ached while thinking about what could have been if it hadn't worked and the pain of those that might still be waiting for an answer. My spirit started to heal from the rollercoaster it had been on through this experience when I decided to be content in a spirit of gratitude.

Eliana is here. God has answered in this way and I am so thankful.

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!