Showing posts with label amniotic fluid embolism. Show all posts
Showing posts with label amniotic fluid embolism. Show all posts

Sunday, 21 June 2020

Seeking Joy, Choosing Light (GoFundMe Update4)

We went to the local pond yesterday instead of the organized field trip to the lake because I wasn't strong enough to take the kids on an adventure without my husband and he had work during that time. I'm grateful he works from home and was able to take us all to the local pond for a half hour during lunch, just long enough to watch everyone shiver in the cold water, tread water, and brave the rope swing! There is still joy in our lives, in the midst of unknown causes of mysterious health problems and missing Abigail every day.

We are so grateful to God for you. If we had known from the start the hospital was going to discount our final amount due so much, we probably would have tried to cover all the costs of Abigail's birth and our emergency care ourselves. Like most people, we don't love asking for help. But if we had known from the start, then we would not have asked our friend Mike to help us tell Abigail's story in a short, sweet video that sums up a lifetime in just a few minutes. We wouldn't have shared this so widely, and all of the thousands of people who watched Abigail's video would have missed out.

We also would have missed out on knowing what incredibly kind and generous people we have surrounding us in this moment.

My dad meeting Abigail

I think God meant for this to happen. All of it. Sometimes I almost think I understand, though I can only see a small part of the grand plan. I know He loves us. I know there's more to life than what we see. I have found a reason to choose the light every day. That's the miracle of Abigail for me and our family. We choose light because it's where Abigail rests. We choose light because it's the home of our someday reunion.

God bless you in your own challenges as you choose light over darkness, kindness over isolation, and hope over despair. May God be with you in peace and joy!


GoFundMe for Medical Costs

Wednesday, 17 June 2020

Completion (GoFundMe Update3)

Phew, I just turned in my final literature review and the last assignment in my Neuroscience Advanced Writing class! I am done with another class! Pre-paper, my grade is 99% so I'm feeling pretty hopeful for an A in the class.

Since I'm closing the book, so to speak, on this class, I put all of the studies I read for the final paper into a binder. This doesn't include the online textbook reading I also did. Even though I wouldn't put this class up there with Biology and Chemistry in terms of difficulty, it was a challenge to read and interpret the data I chose to write about. I am just as relieved to see this class come to a close as I was excited about it beginning.

I hoped that studying neural tube defects after Abigail died from one would be therapeutic, and it definitely has been. It's also been extremely emotional at times, as all therapeutic treatments are. I had a mini health crisis in the middle of the term, but fortunately it wasn't on a day we had class. Doing it all online, thanks to Covid-19, actually saved me from having to travel by myself thirty-five minutes each way after a fainting episode of unknown cause. I don't know if Fall semester will be online, too, but I'm grateful at least that this term and next term are online.

I was also added yesterday to a Facebook support group for survivors of AFE (amniotic fluid embolism). The first thing I did was look up "vasovagal syncope" to see if it was something commonly experienced by AFE survivors. I was actually relieved when I found that others had similar experiences. I have a lot to process now because I've been warned that Sheehan's Syndrome is common after AFE. I already knew from my own scary experience losing consciousness that I would need to be aware of my nutrient levels, particularly electrolytes. This was a heads up that hormone levels may also be an issue. I am hoping vitamins will help my body to start regulating its own hormones so I won't need to supplement with synthetic hormones.

Who knew this experience would make me an expert in so many little known diseases? 😊

Our GoFundMe campaign to cover our medical expenses has been going so well, thanks to the generosity of so many new and old friends, family, and even a few friends of friends. Your kindness and gifts have blessed us in two ways: 1) the financial relief which cannot be overstated! and 2) the emotional relief to see such love expressed. We know we are not alone in this, the most difficult experience of our lives. Thank you!

We stand at $3,614 raised with GoFundMe and $129 donated outside.

That means we still need $1,329 to reach our goal and pay all the medical bills. Please consider sharing this fundraiser link:

https://gf.me/u/x7ftk4

I'll close by sharing a few pictures of the flowers blooming in Abigail's memorial garden in our front yard right now.

yellow snapdragon

pink and white begonias

purple violas

a budding white shasta daisy


Sunday, 24 May 2020

Abigail's 3-Month Birthday

Babe, Smile, Newborn, Small Child, Boy, Person, Smiles
Source: https://pixabay.com/photos/babe-smile-newborn-small-child-boy-2972221/

Tommorow, Abigail will have been 3 months old. She would be chubby and nap a lot. She would be able to respond to sounds, and make them as well. She would begin to smile a lot and start learning how to roll around on her blanket. I would hold her every time I got the chance and look into her beautiful face.

Today I asked my family how they are going to celebrate Abigail's 3-month birthday (Daniel and Ben couldn't do it because they are at their grandparents house).

Here is the video:

And me? I'm going (try) to sketch a picture of Abigail and put it on one of my mirrors so that I can see it every day when I wake up.

Happy Birthday, Abigail!

Wednesday, 1 April 2020

Collateral Beauty and Getting Old is a Gift


Abigail is a gift.

She came like a shooting star, passing through the night sky of our lives, then vanishing from our view. But her beauty and the majesty of her mission stay forever in our minds.

During America's stay-at-home order for the Covid-19 Coronavirus pandemic, which some people have suggested should be known as The Great Pause, many have pondered aloud about the blessings of Coronavirus. Obviously, pandemics are frightening. We worry for ourselves and our loved ones and we feel protective, isolated, and uncertain as we take steps to "flatten the curve" and mitigate the disaster suggested in the word "pandemic." However, many people have seen beauty in the sudden pause, the forced rest, the togetherness of families, the spontaneous and planned acts of charity, the productive and compassionate use of technology to connect and bring hope. It's all beautiful when you look at it that way.

How we look at things makes a big difference in the message we receive from it.

Shortly after getting out of the hospital, Bill and I watched Jumanji II again. It was a movie we had watched twice in the theatre while I was pregnant with Abigail. The timing of the comedian/actors was impeccable and I found myself laughing through the movie both times. We bought it as soon as it came out digitally so we could watch it at home.

This time as I watched it, I tried to remember how much I had enjoyed it before, and how Abigail had kicked up a storm in my womb as I laughed and laughed. There were sweet moments in the movie, too--lessons for the characters to learn and express. Self-appreciation, the importance of leaning on your friends in your vulnerability, and forgiveness.

When I first got home from the hospital, I was relieved to be home and not in a hospital. I was happy to have access to my other children again, to comfort them and enjoy their personalities. And I was driven toward the work that had to be done for Abigail's funeral. Many of the arrangements had already been planned and prepared beforehand. The casket had been made. The funeral gown had been purchased. The burial plot was ready and waiting, and I had written my love note eulogy while still in the hospital. But there were still things to do. I focused on helping Bill to gather his thoughts for what he wanted to say, encouraging our sons to practice the song they were to sing at the funeral: "Families Can Be Together Forever." I focused on welcoming family who came from out of town to help us honor Abigail. All of this felt natural and precious and time slowed down for it.


But after the funeral, I felt physically and emotionally exhausted. It was finally time to feel the backward motion of what can best be described as emotional whiplash. Had it really happened at all? Had Abigail been born, spent her whole life on earth in one day, and gone on to heaven? Had we buried her already? All in less than one week? My head and my heart spun with the surreal speed with which the entire thing had taken place. Time is a luxury we take for granted.

Now that Abigail was gone, I didn't want time. It seemed to stretch out in front of me for miles with no rest stops, an unending march toward my own death so far in the distance. I just wanted to crawl into that hole with Abigail and be buried, too. The fact that I had died, that my heart had stopped, actually gave me a worse case of survivor's guilt. Why was this sweet spirit gone and my crotchety old self still here? I'm 36 years old, but I feel ancient. Life has been incredibly long and more painful than I ever could have imagined before living it. I felt tired. I prayed and prayed and prayed for God to help me to feel like living again. He sent me little messages, in the form of a special card written by a friend or the words to a song, the embrace of a child, the face of my husband.

I could barely pay attention to the movie as we sat on our bed watching Jumanji II. My heart was broken and my will felt so weak. I related less to Danny Glover's cheerful, smiling character who always saw the silver lining and more to Danny DeVito's grouchy old man. His character had just undergone hip surgery and all he would say to anyone who would listen was how much getting old stank. Never get old, he advised his grandson, the main character of the film who was going through his own existential crisis.

Yeah, I thought darkly. Never get old.

But that moment of resonance was only leading me inevitably to the moment at the end of the movie when his character arc would be complete, and when he would say the line that struck me to the core.

As he's playing a video game with his grandson, he starts the familiar phrase he's been saying through the whole movie. "Growing old..."

"Yeah, yeah, I know," his grandson interrupts. "Growing old sucks."

But no, that's not how he was going to end it this time. "Growing old," he says instead, "is a gift." Cue the twinkle in his eye. My spirit felt like a live wire inside me, and I knew God was watching me watch this movie and putting that scene in my path so I would experience this moment.

I knew it was wisdom. And I knew, of course, that life was a gift from our Heavenly Parents to us. It just didn't feel like one anymore. Abigail's life had been a gift. I hung onto that fact, and I added to it the message I had felt resonate in my bones: my life is a gift. Living right now is a gift.

Since then, I have continued to receive these little messages all around me, because I've been looking for them. My search for meaning intensified the day we received Abigail's original diagnosis of anencephaly on November 8, 2019. After her death on February 26, 2020, this search goes on. I am especially looking forward to the April General Conference of The Church of Jesus Christ of Latter-day Saints this weekend because the words of living prophets are a bounty of little messages when you're open to receiving them.

Today, I tell people I am doing pretty well. I cry and I struggle against thoughts of worthiness and worthwhileness. I try to get back that surety that I have felt at various times in my life, the surety that allowed me to walk through the fire with Abigail in the first place. And I watch for messages from the Lord. I need them now more than ever before in my life. I need them just to get out of bed in the morning. They continue to come through my children's hugs and tears, through my husband's words and glances, through scripture, in movies and music and books, through friends and flowers, even a cloudy sky.

We are all walking forward.

Shortly after I came home from the hospital, I moved Abigail's bassinet into my bedroom, right by my side of the bed, under the window. It's where I would have put it if she had lived and we had brought her home. It's where I needed it now, even though she wasn't here anymore. I filled it with a box of 4x6 photos, mostly black and white, of Abigail's feet and hands and my children holding her, and Bill walking through the hospital with her like her sentinel in his Batman shirt.


And I filled it with baby blankets, all the ones she used in her hospital stay and the big one that had covered her throughout the night, the one my mom had crocheted just for her. On the top of the pile I put the preemie sleeper outfit that she had worn throughout that special day of being alive with us. It was a turquoise blue and said "Little Sister" in pink letters. It rested now, lifeless, on top of a swaddling blanket still stained, despite washing, from the piece of the placenta that had been her crown and constant companion in this life.


For the first week, I stopped by the bassinet before getting back in bed, and lifted the tiny outfit and blanket to my face. I tried to inhale whatever of her essence remained in the weave of the fabric. Until one day I lifted it and couldn't smell her anymore. I still looked at it, and held the big crocheted blanket my mom had made. It was almost as big as Abigail, all folded up on itself, and I held it to my chest as if it were her.



After we planted her cherry tree, I looked out the window as I held the blanket and imagined the cherry tree in full bloom with all its temporary seasonal glory.

When my kids came to visit me in my room during my recovery, they sidled past the bassinet and tried not to bump it too much because they knew that would upset me. We had family prayers around our bed, seven people crowded around on their knees with their arms folded as we prayed together each night before bed. The bassinet made it quite crowded on my side.

I knew I couldn't keep the bassinet there forever, but I wanted her blankets and her little owl where I could reach them when I needed them. Thankfully, one night I had a stroke of inspiration. That happens often when you stay up an extra hour lying in bed without distractions. I planned it all out in my mind, and then this bench became the solution.


Before we moved, it was put outside while we tiled most of the floors in our old house. When I asked the boys to keep busy painting the table and chairs white, someone painted this bench, too. It looked like a child had painted it. When we moved the furniture into the new house, there was no place for this window seat. The new kitchen had no outside wall and no window for a window seat. I put it outside by the grill and forgot about it. The other day I pulled out the cordless sander and did my best to add to its character, bring out some of that pretty burgundy red. My body is still very sore, so I only managed to give it a little more character, but I'm happy with my efforts. The bassinet is gone. All the blankets are in this storage bench, and the owl sits on top.


This will be a good place to sit and watch the cherry tree in bloom.

I sent the picture of the bench to my mom and sisters. My mom said, "You're not forgetting, just moving forward." That is right.

*sigh*

This is hard but necessary.

Abigail has been gone a month. I don't think I will ever get over it. But I am getting through it. We all are.

Last week, Bill and I pulled out another favorite movie, Collateral Beauty. I had been afraid to watch it because Will Smith's main character is a man who recently lost his six-year-old daughter to a rare disease.


It hits so close to home, but I needed to watch it again. His journey to acceptance involves writing letters to the three abstractions: Time, Love, and Death. So many of the things he writes to them are poetic versions of my own grief-stricken thoughts. In the case of this film, the title is the lesson, but the audience goes on the same journey as the main character to accept it--because at first it sounds like fluffy nonsense. The stages of grief do not often brook fluffy nonsense. We have to go through all of the main character's conversations with Time, Love, Death, and his ex-wife, before we can believe that there is any such thing as collateral beauty.

"It's there," the ex-wife promises him. And it really is. Bill and I have seen it, felt it, practically swam in it at times.

God is good all the time. There is a Divine Order, as Jeff Olsen says in his book, Knowing. Everything is in Divine Order, though it doesn't often feel that way to us. A simple search of chaos theory on the internet tells us how much we don't know about the way nature functions. What looks like chaos is actually order, and it is designed.

Whatever you're going through, I hope this can be one of your messages for the moment you need it. You are known and loved, cherished even. The way we cherish Abigail times infinity.

God not only loves us each profoundly, but there is a plan for our ultimate happiness. It can't be seen in intricate detail because the future is to be lived moment by moment. So I try to be content with my little messages: the glass butterfly I found in Abigail's garden (or did it find me?); the March snowfall that covered everything in a silent, serene white veil; the pandemic that halted the world for my grief.

There is definitely such a thing as collateral beauty. It's the part that makes life a gift worth living.

Wednesday, 25 March 2020

How Do We Love You? Let Me Count the Ways




Today we celebrate Abigail's one month birthday. Life has slowed down since Abigail's birth and funeral, and not just for us. The whole world seems to be in the grip of the Covid-19 Coronavirus pandemic. Most of the traffic on our roads is delivery trucks. People are sheltering-in-place at home, whole families working from home. Not much changed for us, but the rest of the world seemed to slow down with us. I'm actually grateful for this, not the disease or the pandemic, but the quiet. It's almost like a moment of silence. Just a week before, I had been saying here on the blog and to my family that it felt like life should slow down. I didn't like how quickly she came, then left, and was honored and buried. The next step in that sequence is either for her to be forgotten or to be consciously remembered. We have been working consciously to remember Abigail.

The FedEx man brought Abigail's angel memorial statue on March 20. We barely dared to take it partially out of its packaging. The last step is to get it and the stone set in concrete with a flower vase over Abigail's grave. I'm eager to get it set. The process of burial just doesn't seem complete until this is done.



Bill and I want to thank all who donated to this memorial fund, from the bottom of our hearts. This has meant so much to us!! We want to remember Abigail in as many ways that we can. 

Our family has been self-quarantining like most everyone else. When we got too stir crazy, we took Saturday, March 21st to go hiking in Payson Canyon. We were going to do the Grotto hike but the road is still closed so we walked up the road for the same distance we would have on the hike and then turned around. Luckily, we saw several waterfalls along the way, and it snowed so we felt like we were in a snow globe, too. 



On our way back from the hike, we picked up a sweet stella cherry tree from a local nursery and planted it in memory of Abigail Réileen. We'll be able to see it bloom from our bedroom window, though maybe not this first year. 🌸🍒


I really wanted to celebrate her one month birthday like this, so I'm grateful to Bill for making it happen, though we did the actual planting a few days before.

This arrived Saturday, as well. Now I can carry a lock of her hair with me, and her name near my heart.


It is very up and down at our house. I think a lot of people are dealing with cabin fever. That can mean more opportunities for interpersonal conflict. One minute, we have this kind of teamwork to surprise Mom (sweet angels) and the next minute there's a war of words that escalates to physical conflict. Ay, me. We need more angels.


Our canvas prints from Costco came in the mail yesterday. It's so special to me to have these where we can see them all the time. This family wall is not done, but it's feeling fuller and that makes me happy. I want to put up a montage of all the boys holding their baby sister so they will remember their personal connection with her on that special day she was born.



Angel Watch, which has been very kind and helpful throughout our experience with Abigail, had to cancel our visit yesterday because of Covid-19 and social distancing protocol. I was a little disappointed, but I understood.

We've found ourselves feeling grateful for the timing of our experience. As dear friends get ready to welcome their own babies into the world, there is so much anxiety about going to the hospital and how their experience will be different because of Covid-19. We pray for them. I cannot imagine having Abigail and my near-death-event in a hospital today. Even if Abigail had been born three weeks later, on her due date, the pandemic would already have been declared, and even husbands are being kept out of birthing rooms today in many hospitals. Bill might not have been allowed in the operating room!

The beautiful family celebration that happened in the labor and delivery room, in which all of Abigail's present family members got to meet her and hold her and be photographed with her, would not have happened today. How different would our grieving process have been then? I shudder to think of it. My heart couldn't have withstood that. 

I'm already struggling to be grateful for what did happen. I asked God to help me to feel more grateful for my life. He put several books in my path, some that are old friends from my library, and some that are new kindle ebooks. I've been presented with passages about how precious life is, how good the Savior is for all He endured so He could succor us, and I've also been given stories of the suffering and subsequent gratitude of others. 

Last night when I couldn't stop crying or fall sleep, I searched amniotic fluid embolism stories online and discovered a website to support survivors of AFE and their families. AFE is why my heart stopped, according to the doctors' best understanding. In my case, my heart stopped for 20-30 seconds, long enough for brain activity to cease, but my heart was immediately restarted at that point by a shot of epinephrine into my IV. I didn't even need a blood transfusion.

But my experience with AFE was rare. In many cases, mothers who experience an AFE event die, or they incur serious and lasting injury. In many cases, babies die, too. I read one woman's experience of fighting for her life on and off for weeks while her baby went home with her husband and her other children. Not only did she suffer so many traumatic health events in the hospital during those weeks, but she suffered the guilt and loss of not being able to spend her baby's first month with her. If that had happened to me, I would have completely missed Abigail's one day on earth. What I have called our best day ever wouldn't have happened. 

Fortunately, this woman did get to go home eventually, and she got to raise her baby. I don't get to raise Abigail right now, and that's where the heaviest grief is coming from. Scriptures teach that faith and fear cannot coexist. But what about grief and gratitude? This is me today, wearing my necklaces to remember Abigail.


I'm wearing a shirt I bought before Abigail's birth. It was actually the shirt I wore the day she died. It says, "Blessed." And the sticker is one Corbin picked out for me. Ironically, it's a character named Joy. So today, on March 25, 2020, as we remember Abigail on her one month birthday, I'm wearing all the reminders of gratitude and joy. Even Abigail's name means joy.

Throughout this ordeal, we have been the recipients of many acts of love and remembrance for Abigail. I have never done anything to deserve all of those acts of love, and yet people have given them anyway. I feel grateful for them. Today, two friends remembered Abigail through thoughtful gifts.

This beautiful gift made my husband cry.


This one helped my back to stop crying.
(Lava Bag, made by my friends the Coopers at Lavahq.com to heat my soreness away.)

We all need these tender mercies. Here's an uplifting article from my church about all the many ways people are reaching out to each other to minister during this collective experience of isolation. We have felt the love of angels in human form ministering to us. Thank you!

I know that somehow we are made to be able to feel both grief and gratitude at the same time because it is happening to me all the time lately. I am sort of like a hurt child whose mother has her arms open wide to receive her, but I can't bring myself to surrender to her embrace. I felt God asking me today why I am resisting His love. I don't mean to do that, but I have to admit that by refusing to feel gratitude I am resisting the joy that comes only through that pure love of Christ. Maybe the grief and gratitude paradox is resolved in Jill Thomas's HOPE WORKS talk, "Seeing Green."


Yes, it's blue, and yes, it's yellow, but at the same time, it's something altogether different. I'm not at the peaceful place Jill seems to be when she gives this beautiful talk, but her words, and the words of so many other people who see green, have given me hope that one day I will.

Until that beautiful green day, I will keep giving love to my children, on both sides of the veil. And we will remember Abigail today and always.