sids

Pregnancy after SIDS

Hi there, it has been awhile since I have updated my blog. My last post was right before the 2 year anniversary of Grey’s passing. It has now been over 3 years and I literally can’t believe that much time as gone by. My sweet boy should have been filling our hearts with so much life and joy, I just miss him so much. I think of him every day and is absence is always felt. I can’t say what I thought I would feel, over time, in the immediate after because I was numb and in shock for so long. I know now that the pain will never go away. Nothing is like losing a child. It is natural to want to compare your feelings to something, but…there is nothing. I still wonder why? Why my Grey? Why me? Why do I have to live with this pain? I know that the first two years were the hardest years of my life. I avoided friends and family and constantly felt insecure, sad, lonely and lost. I wondered how I could live out the rest of my life. The passing of time hasn’t made it any better, but the intensity of the pain has lifted.

In the English language there are orphans and widows, but there is no word for the parents who lose a child. That is how awful the loss is.

I did have a mission that kept me motivated and pushing forward and that was to give him a sibling. If you know me, this is not news, we are expecting a baby girl in May! After the disaster of our first fertility clinic we sought out a second opinion and found a new doctor and a new plan. By that time, however, we had spent all our extra money and needed revenue to move forward. I knew we had equity in our house but we first tried to get a grant but, unfortunately, we did not get selected. We then went forward with a refi on our house and started with our new clinic in February 2019. We had our first embryo transfer in March and it failed. I wanted to start again right away and we were scheduled for another transfer in July. I developed a cyst that had to get aspirated while we were prepping my lining for the embryo. The procedure to drain the cyst was supposed to be easy peasy but my body had an intense reaction to the internal pain. I almost passed out after getting off the elevator after the procedure and had to be assisted walking to a sitting area where I promptly puked in a super stinky garbage can. I suppose I am happy I got it in the can. I was in pretty bad pain for the next 2 days. Then, just days before the transfer the doctor stopped all meds to “give my body a rest” and I ovulated. That meant our transfer was canceled. I mean, are you kidding me? We were getting real tired of all the appointments and waiting. So much waiting. It would be another 3 months until we could try again but, the wait was worth it! We had a positive pregnancy test at the end of last September.

0-2 — First transfer, much needed vacation, intention in the sand, second transfer, 1st ultra sound.

Let me discuss what it is like to be pregnant after infant loss and infertility treatment. It is terrifying. When I was pregnant with Grey it was the happiest time in my life. I would laugh and laugh and go to sleep dreaming about our future lives. I wanted that back and I thought I would get it back. But, no — that is not how it worked. After getting my positive test I was scared to go to the bathroom, my hands would shake and I was certain I would see red. I was scared to sneeze or cough, to exercise or do yoga. My husband and I barely talked about the pregnancy for the first 3 months. In fact, I had kept quiet to most of my friends and family that we were even still trying. I only confided in my best friend, mother-in-law and aunt. The pain of the previous attempts and all the sharing was just too much. I wanted to simply tell my loved ones we were pregnant. We finally told our families on Thanksgiving and the announced to the world (via facebook) in mid-December. After our announcement I was convinced something would go wrong. I was absolutely terrified that the baby’s heart would stop beating. I was getting myself so worked up and crying and panicking daily. A co-worker asked me how I was doing and I burst into tears and let all my feelings out. This woman had a late pregnancy loss with one of her children and she knew exactly how I was feeling, which was so comforting. We bought a baby doppler that night so I could listen for her heartbeat whenever I wanted and that provided so much relief. I told myself to pull it together as I did not want my nervousness and fear passing to the baby. Getting pregnant is just one step in the process.

Right now I am 31.5 weeks pregnant. Since I started to feel her move I have finally been able to feel excited and looking forward to our future. Loss mom’s will say that your next baby is not a replacement baby. That is so very true. I will admit that I really understood that after finding out we were having a girl. I wanted a boy. I want my Grey. I knew once that pink balloon popped that I had hoped for a boy, a baby who might look like Grey. I had to come to terms that he will only live in my heart. It sounds so silly an petty to have those thoughts, but I did. Now, I am just so very, very grateful and so happy that we get to be parents to our little girl. I can’t wait to meet her, to see her personality, to watch her grow and to be her mommy. What have other loss mom’s felt during their subsequent pregnancies? I would love to hear from you.

The Darkness

It is very important to me to provide information about SIDS, what I have discovered and share current research. My hope is that other loss moms have found my blog and are gaining some comfort or insights from my posts. I was reading through my blog posts and started to get worried that I wasn’t expressing how I really feel on my day-to-day. Being a mom who has lost her child is on my mind everyday from the second I wake-up until I lay my head to sleep at night and sometimes into my dreams. Focusing on hope, love and community helps me get through each day. I feel like it is important for me to share some of the real darkness I have felt. I’m sharing this because I get comfort knowing that other moms experience similar pain, grief is so lonely and not easy to talk about. Yes– I get up and take care of myself, go to work, make dinner, care for my home, spend time with friends, smile and laugh. My inner struggle, my darkness, I keep secret– scared of sharing my true feelings and emotions with others.

Several months after the shock of losing Grey settled in I put a lot of thought into taking my own life. How could I go on? My pain was immense. I had a few freeway road rage incidents where I didn’t care if the end result was me driving into a wall. I researched how to take my own life, what pills could I take, could I poison myself? Can I sit in my car in the garage? Would someone do it for me when I was out walking the dog? I got my husband’s gun and held it in my hands and wondered where I would pull the trigger. I thought I was being slick and hiding these thoughts until my husband asked me if I was going to hurt myself. I reassured him that I wouldn’t but, honestly, I was scared that I might.

I haven’t touched Grey’s room. His dirty clothes are still in the hamper – his 6 and 12 month outfits hanging in the closet. His room still smells like a baby and I feel his presence when I go in there. Sometimes, I go in and rock in the chair and smell his clothes and think of him in my arms. I sleep with his favorite baby blanket and look for it in the night to make sure that it is covering me or that I am touching it in some way.

Grey’s urn is on my nightstand.

I imagine sometimes that he is with us. When I am relaxing outside I imagine him playing near me. When we go places or do fun things I always wish he was with us. I cried for 4 hours on a road trip awhile back – used to crying in private, I couldn’t hide my tears and pain from Stacy. Why did this happen?? My Dad had been battling cancer for a few years and passed away just 5 months after Grey. Still deeply mourning my son, I could’t separate my grief, I imagined him with me at the hospital. I envisioned him sitting on the hospital bed with his grandpa, bringing us light at a dark time.

When I am working and I start to cry at my desk I try to make my way to the bathroom unnoticed. I cry in the stall and learned to lean my head over my knees and let my tears drop down to the floor. I often cry in my car, it is the only place that I am really alone with my thoughts. I have screamed at the top of my lungs driving down the street because sometimes crying isn’t enough.

I see other moms who have had babies since losing Grey and I can barely contain my tears– oftentimes avoiding an interaction at all costs. It takes a lot of effort and planning to be around babies and kids that are the same age as Grey. I could not attend my nieces 5th birthday this year – I sat in the parking lot of the pizza parlor sobbing uncontrollably and trying to convince myself I was strong enough to go inside.

I feel sorry for myself, a lot.

I had to stop social media for a significant amount of time. I currently use it–cautiously. I had to unfollow some friends and even block a few. I have had pregnancy and birth announcements put me out for an entire day. I also had to quit HGTV (and a few other shows I used to watch) – one family had a particularly cute pregnancy announcement at the end of their segment and I ended up having to take the next day off of work. Media is extremely triggering.

I am truly happy for you –just so very sad for myself.

Today marks one week from Grey’s second angelversary, I can’t believe it has been two years. It feels like yesterday and also like a thousand years ago….a happy dream or another life. I will say that each day has gotten better but the emptiness I feel without him will always be heavy on my heart.

I want to end today’s post with a quote I found in the Guardian:

“Compassion literally means to suffer alongside. The greatest gift we can give the bereaved, with the loneliness that accompanies loss, is to not run away”

Taking pictures in the afternoon light ~March 6, 2017~

Resources and Research

Hi everyone! October is SIDS awareness month and is so very important to myself, my husband and our families to share information about SIDS and SIDS research. We need to find a cure! [edit: ‘finding a cure’ doesn’t seem like the right terminology since the cause is still unknown. Maybe we should say, find a cause?] If you live in Eastern Washington or Idaho our non-profit that provides grief support and education is Inland Northwest SIDS/SUID Foundation. Just a few weeks ago they held their annual Run for the Angels and Family Fun day in Coeur d’Alene, Idaho. Our family and close friends showed up to support us and our Grey. It was a beautiful day and a great way to raise awareness and needed funding for a vital foundation. This was their 4th annual run, if you live in the area look for it next year, it will always be held in October. The foundation does an amazing job of honoring our babies and making it a fun event for the whole family with coffee and food on site, music, a silent auction, face painting, bouncy castles and a 5k run.

Part of Team Grey, we are so thankful for you.

Balloon release for our angels, “somewhere over the rainbow blue birds fly”

Another local foundation for SIDS is in Seattle, the Aaron Matthew SIDS Research Guild of Seattle Children’s Hospital, and it is absolutely amazing. They are funding crucial research to figuring out why our babies go to sleep and not wake up. They are using the power of technology from Microsoft data scientists and partnering with amazing doctors at Seattle Children’s Hospital (as well as other hospitals from across the country) to work on this mystery. They posted on their site this important and sad fact, “there has been little to no improvement in the rate of death since the mid-90’s. SIDS strikes without warning and leaves few clues about its cause. The causes are unknown.” A current campaign, First Steps for SIDS, runs through January 1st 2019 and you can donate as little as $5 and every dollar raised will be matched up to $100K. Just think, if every person following me on Instagram donated $5 we could raise $2,635 and that would be doubled by the match, wow! All proceeds go towards research. If you came across this blog after January 2019 and you want to donate to Seattle Children’s Hospital SIDS research you can go to their site and donate at any time, all links are shared below.

A SIDS mom that I have met shared with me the important work she is doing on the East Coast to raise awarness and dollars via her non-profit she created for her son, Knox Blocks. She fights for our babies daily and has been in contact with Boston Children’s Hospital and Harvard Medical as they are also working on unlocking the mystery. She shared this important and shocking information, “What we do know is that SIDS kills more babies between the ages of 0-12 months old in ONE YEAR than cancer kills children between the ages of 0-19 yrs old in one year. Reread that sentence and let it sink in.”

Funding is critical and every dollar counts because it truly is more than safe sleep! Here are some links for research and support.

Aaron Matthew SIDS Research Guild of Seattle Children’s Hospital

http://www.inwsids.org/

https://firststepsforsids.org/

https://www.knoxblocks.org/

http://www.childrenshospital.org

American SIDS Institute

My beautiful boy ~February 25, 2017~ I will always fight for you.

Grief

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”
— Washington Irving

I woke up the other day and as I was laying in bed I was thinking, if I don’t start my period today I will take a pregnancy test, Stacy and I have been trying to conceive for 13 months. We had been getting fertility treatments (more on that process later) and I decided to take a month off, to give my body some time away from the medications. Maybe I will be one of those stories– the woman who gets pregnant after fertility treatments stop?! Maybe it will be like when I found out I was pregnant with Grey, no real symptoms, just not starting my cycle and hoping pregnancy was the reason?! I thought–don’t get too excited. I went to the bathroom and there it was, old aunt flo. Damn, damn, damn! I laid back in bed and I thought that I don’t have to cry about it, I have been through this before. But, yeah – that didn’t happen.

I spent most of the day crying and wondering why? Why won’t my body give me another baby? Having trouble conceiving after loss adds another layer of intense grief to my every day pain. At first, I was so hopeful that we were going to give Grey a sibling. But, as time continues to pass and my time away from Grey gets longer and longer, I am often filled with fear and sadness. We are still trying, I am not ready to give up, but now we are also exploring other options on how to expand our family.

I think about everything that I am missing out on, pretty much daily. My son should be 19 months old– walking, taking, growing, eating, laughing, falling and playing with his cousins and friends. I should be going on playdates, taking a gazillion pictures and planning fun things for us to do. We should be lounging at the lake or hanging out at home with the dogs. I should be a over-worked, exhausted and happy mom. Grey was supposed to bring me closer to people. Lately, I feel so far away from everyone and very, very lonely. I get nervous going out into the world, scared to meet a stranger who may ask me if I have any children. I feel embarrassed and ashamed that I am not strong enough to ask about or to spend time with the kiddos who are the same age as Grey. Not that I have not been around children, I work with families, I see babies and children every day. I just dreamt so much about my future with Grey and his friends and their mama’s – I am still working through that loss as well.

I think back onto the person that I used to be; happy, fun, a party planner, a positive person, someone who was there for her friends and family. Another loss mom and I were having a conversation about our grief and she said, “it makes you feel so selfish.” Whammo! Yes! She was so right and I felt relief when she said that. It is in my nature to be a giver and, right now, I just don’t have it in me. It is okay to be protective of myself and my emotions. Still, I mourn be the old me, I want to go back to when it was us and Grey and the future. Time feels like it is standing still for me while everyone around me is growing and moving and living.

I wonder sometimes what it is like to be someone who shares their truth more? I admire some of the loss mom’s out there that can share their feelings on social media regularly. Would it make me feel better if I was more like that? I likely can’t change how I share my truth and how often I do it, maybe that will change as time goes on. This blogs helps as it is important to talk about infant/child loss no matter how heavy it feels. Right now, I take things day by day and acknowledge little successes. The way I feel now won’t be the way I feel forever, will it? I think about a future and try to imagine it being happy.

Be brave

Be courageous

Focus on hope

What is Sudden Infant Death Syndrome? I try to think back on what I thought about SIDS prior to loosing Grey and it is hard to remember what I knew or what I thought I knew about SIDS. When I would think of all the potential things that could happen to my son it was not at the top of my list. I remember getting so scared that he would get kidnapped. I stayed up some nights thinking about how could I put a tracking device on him. What if I turned my back for a second at the store or at the park? What if someone was babysitting him and they didn’t have their eyes on him for a few minutes? A babysitter will not love him or worry about him the way that I will. What if he runs behind a car that is backing up or chokes on a toy? How will I keep him safe when we go to the lake? I would think of endless possible scenarios and how I would prevent them from happening.

We practiced all safe sleep practices; have baby in a bassinet by your bed, don’t let baby get too hot, don’t put baby on soft sleep surface– check, check, check. Baby monitor -check. Breastfeed- check. Nothing in the crib with baby while sleeping, don’t let baby co-sleep with parents– check, check. Saying the words, “SIDS prevention tips” makes me crazy and so, so mad. See, the reality is there is NO WAY to prevent SIDS. That is a tough sentence to write and a very hard reality, I question that truth often. How is it even possible? Why does a healthy baby go to sleep and not wake up? The reality of losing your child to SIDS, to not having an actual answer as to why your child died, is incredibly painful. Trust me, I asked all the questions. I made sure that no stone was unturned in figuring out what happened to Grey. When I spoke to the medical examiner on the phone she told me that babies that die from SIDS simply shut off. I asked her if anything was blocking his airway and she assured me that she would be able to tell from the autopsy if something was. She told me that we did nothing wrong and that there was nothing that we could do.

So what is it? Here are the facts….

Major cause of death in infants 1 month to 1 year of age, with most deaths occurring between 2 and 4 months.
Sudden and silent– the infant is seemingly healthy
A death often associated with sleep and with no sings of suffering
A recognized medical disorder
Determined only after an autopsy, an examination of the death scene, and a review of the infants and family’s clinical histories.
An infant death that leaves unanswered questions, causing intense grief for parents and families.

What it is not…

Preventable
Suffocation
Caused by vomiting and choking or by minor illness
Caused by vaccines or other immunizations
Child abuse or neglect
The cause of every unexpected infant death

Research that is being conducted to find an answer has several different theories or risks that can lead up to the event. There is the Triple Risk Model as per the above graphic– it is not one thing that will cause a SIDS death but several risk factors that all have to align at the same time. The biggest and most promising research being done is on brain abnormalities in our babies, “infants who die of SIDS may have abnormalities in several parts of the brainstem.” The research also states, “infants were found to have decreased binding of serotonin in the nucleus raphe obscurus { }, as well as four other brain regions.” Basically, a disconnect between the brain the the respiratory system -they stop communicating and breathing stops. Our babies arousal alert system stops and they don’t know that they are in danger. This is why all the emphasis put on the safe sleep campaign rubs me the wrong way. Babies are still dying and, I believe, we are not looking into the other reasons with as much vigor. It is so easy to promote safe sleep, it is simple, understandable and easy to communicate the message. When we start taking about brain abnormalities and the respiratory system it gets difficult to understand and explain. I have learned that 20% of babies that die from SIDS are in child care, was that his outside stressor? The questions can be endless and the heartbreak is tremendous. More money and time needs to be put into research to unlock the mystery of SIDS. Please see the links below for more information.

Research used was taken from Northwest Infant Survival and SIDS Alliance website: What is SIDS (PDF).

https://www.nwsids.org/

http://sidsguild.org/

https://news.microsoft.com/features/love-aaron-children-may-susceptible-sids/

https://owletcare.com/

March 17th

“The death of a baby is like a stone cast into the stillness of a quiet pool; the concentric ripples of despair sweep out in all directions, affecting many, many people.”

This post may be upsetting, trigger.

I was nearing the end of my maternity leave. I started back to work part-time, as a way to ease Grey, and myself, into daycare and our time apart. It was a Friday, his second full day at daycare. I dropped him off and headed to work. At lunch I had contemplated stopping by to visit as the sitter’s house was less than 10 minutes from work but I thought, it’s the weekend, I want to get him home early. That decision has endlessly haunted me. I had just gotten back from running errands during lunch. It was a little after 12:30 and I was showing a co-worker a video of Grey. He walked away and I noticed that I had missed a call, it was the babysitter. Before I had a chance to call back she called again,

“Grey’s not breathing!” she cried

“What?!”

“Ambulance is on the way”

I hung up the phone and ran out of the office. It had snowed the night before so the roads were slick and snowy, I was driving so fast and I didn’t care. I managed to call Stacy and tell him what was happening, not having any information for him as I just wanted to get to Grey. When I turned the corner I saw that the ambulance was already there. I ran into the house and saw my son on the floor. The EMT was already administering CPR and I went into a state of complete shock. My tiny, helpless son was surrounded by technicians and next thing I remember is them telling me that they were heading to the hospital. Did I want to ride in the ambulance or someone would drive me? “I am staying with my son!” I shouted. I had to be assisted to the ambulance and they put me in the front seat, not allowing me in the back with Grey.

Driving to the hospital I was just saying, “please, please, please, please” over and over, praying so hard for Grey to be ok. When we arrived, I saw my husband running into the hospital. The next moments are like flashes, getting escorted into the hospital, two hospital chaplains waiting for us, my husband arriving. I was hyperventilating and I heard him say under his breath, “be strong.” I took some big deep breaths of air and thought, this is the best hospital for children, Grey will be ok. Next thing I know, the doctor walked into the room and knelt down by Stacy, “I am sorry, your son is dead.” I just screamed and wailed. NO! No, no, no, no, no. How could this be happening? This isn’t real.

They told us that we could see him. We walked into the operating room and he was on the table. How could this be?! I embraced my son and kissed him and rubbed his head. I had my face to his cheek, kissing him and looking at him, “Grey?” He looked so peaceful, like he could wake up and look at me with his big, beautiful eyes. A police officer came into the room and said that he needed to examine Grey, we stepped out and my mother in law and Aunt had arrived.

The police officer informed us that they were conducting an investigation to find out what happened. He stated that at this point, they did not find any neglect on the part of the babysitter but assured us that a full investigation would occur. We went back into to OR to spend time with Grey and to say our final goodbyes. Leaving him was devastating, I didn’t want to. How could I leave without my son?

We went home and I went into Grey’s room, grabbed a handful of his clothes and blankets and laid in our bed. Our families and friends came over and I couldn’t move, they came into our room and hugged us, provided what support they could. That evening, after everyone left and Stacy was asleep I was still just, awake, confused, in shock. I called my best friend, Leah, and she came over right away. I hadn’t yet actually cried and that was bothering me. Realizing now that the shock was preventing me from that release. When she came over and it was just us I was able to let go – crying harder than imaginable. Also, my milk was in and way ready to come out- I was in pain from needing to breast feed. I left my pump at work so Leah went and bought me a pump at Target. I pumped, and cried, and cried and cried.

Why do I want to share the story of this day? Because after Grey died I scoured the internet looking for answers. What happened, why? What did other families experience? Why did my perfectly healthy baby go to sleep and not wake up? I was so grateful for the strong and brave moms out there that were able to share their stories. I hope that by sharing Grey’s story it may provide comfort and healing to other moms. As I am writing this post it has been over a year since that day and I have just found the strength to share. My love for Grey continues to grow and I will fight for him forever.

My very last picture of Grey ~March 15, 2017~

Welcome ~ About

Grey Rowan Everly

Thanks for joining me!

“I didn’t want to kiss you goodbye, that was the trouble; I wanted to kiss you goodnight. And there’s a lot of difference.” Ernest Hemingway

Hi my name is Sasha, I live in the Great Pacific Northwest with my husband, Stacy, our 2 dogs and our beautiful angel baby, Grey. We had 87 magical days with our son before he was taken from us by the mystery of SIDS on March 17th, 2017. The days and months since his passing have been the most challenging times I have ever experienced. I get asked sometimes, “How do you do it?” or “I couldn’t imagine,” and honestly, I agree! I can’t imagine and I don’t know. I think about the love I have for my son and it simultaneously fills me with incredible joy and crushing sadness. One thing I know for sure, I am so thankful for my support system; my husband, family, friends and co-workers. I am thankful for the other SIDS mom’s I have met and the internet, really, the internet! Reading other families stories, seeing normal people affected by SIDS and how they are coping makes this journey a little less isolating. This blog is my way of honoring my son and his beautiful time with us, because really, all I want to do is talk about him everyday. I want him to be proud of me. Sharing his story and my journey feels right, no matter how terrified I am to do it.