sids research – Sunshine in Grey

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.

365 days

It has been a year since we have been serious about getting pregnant. One morning, a month or so after Grey had passed we were driving to breakfast and Stacy asked me if I was crying the night before as we were laying in bed to sleep, “yes” I replied. A few moments later he said,

“So, are we going to have another baby or what?”

Yes! Yes, so much yes I cried. I had been wanting to talk to him about having another child but I felt like a crazy lady, like- give yourself some time. But also, in the back of my mind, thinking about my age and the reality that we should get started right away – another child would help to heal our aching hearts and fill my empty arms. Nothing became more important to me than giving our Grey a sibling. It was the strangest thing going back to trying to conceive mode, removing my IUD, tracking my cycle in my fertility app, taking prenatal and restarting acupuncture. My acupuncturist gave me a lot of hope, she said I was riding on a wave of hormones that would be good for getting pregnant again. I went back to see the doctor that delivered Grey to make sure that getting pregnant again would be safe and had my blood drawn to check my hormone levels. I wanted to recreate everything I was doing that I believed helped me conceive Grey; eating healthy, fertility smoothies, exercising, having a positive mindset (that one was very tough) even down to the scent I wore and music I listened to (reggae). Looking back, it was a good distraction and gave me something to focus on other than my grief.

Supplements, tests, acupuncture OH MY – TTC is fun!

Towards the end of August last year I started to get worried about our success in having a baby. I was constantly online reading about TTC over 40 and implemented every bit of baby making voodoo I thought could possibly help us. I decided to make an appointment with a fertility clinic to see what they had to say about our chances. When I was driving to my first appointment I got to the off ramp to the clinic and instantly started crying, I couldn’t control it. I entered the facility and let me tell you, my visit with them didn’t help the tears, in fact, when I left it felt like they pushed me off a cliff and yelled, “good luck ya old hag” after me. It was the worst. But, still we decided to follow through with treatment. I read that one can improve egg health in 90 days by eating right and taking an array of supplements. So, for the following 90 days (and subsequent days) I have pretty much been a pillar of health, full of supplements, alcohol free and caffeine limited. I wanted to make sure that if we were going to go through with IVF that I was giving myself the best possible chance by being as healthy as possible. We still tried on our own every month but it just wasn’t working out for us, it was devastating. We started our first, and only, IVF cycle in January 2018.

I am not going to sugar coat it- our IVF cycle was a complete disaster. I was diagnosed with diminished ovarian reserve which is terrible for any woman and awful if you are over forty. My RE (Reproductive Endocrinologist) suggested protocol was a mini IVF where I take less medication than a traditional IVF cycle because she predicted that I would produce the same amount of follicles on less medication as I would if I took traditional IVF medications. OK I thought, I am going to trust in the process and go with what my RE suggests. At my follicle scan I had 3 – two good-sized ones and a third smaller follicle. At my second scan the third follicle had not gotten to the size she wanted and she suggested that we flip to an IUI. I told her that I wanted to discuss with Stacy and I would get back to her. When I called her back she said that I should go in for a third scan the next morning to see what growth we got from the follicle over night. When I went in that next morning I told the nurse that I didn’t want to do the scan and I was OK with flipping to an IUI. She said we should just take a look at my follicles and see where they were at and wouldn’t ya know – the third follicle got to the size they were hoping for to move forward with an IVF cycle. I am going to stop and say – this really makes me mad, IVF is a big deal and very expensive. When you are under the age of 40 they give you package deals – some even let you pay in advance for a guarantee that you will take home a baby. If you are over 40 you get no deals, you have to pay full price for everything. Each decision that is made has to be a good one and this was not the right choice.

When we went in for our egg retrieval the RE sat next to me and said, “We can get 3, 2, 1 or 0 eggs today.” Um, excuse me – where does zero eggs come from?! Not getting any eggs was never discussed as a possibility prior to the retreival. She then said it was weird that my 3rd follicle got to the right size. What?! In my mind I thought that I was there for a reason and told myself that we will get a good result. The doc then asked me what kind of music I wanted to listen to while they put me under, reggae of course, Bob Marley. When I woke up I saw Stacy sitting next to me and the first thing I asked was how many eggs we got.

One.

We retrieved one egg, I was devastated and immediately started crying. You want as many eggs as possible and I just couldn’t believe we went through all of that for one chance. Stacy was so wonderful and positive, he did his best to make me see the good in what we had. The next day they called us to say that our egg fertilized with no issues and that they would call us in 3 days and let us know if the embryo survived and divided enough to transfer back to me. On day 3 our egg divided to a 5 cell embryo and they said that we should transfer it back to me. We went in for the procedure and when we left they called me “PUPO” – pregnant until proven otherwise.

Blowing kisses to my 3 follicles, our one embryo, the dreaded two-week wait.

You are then sent on your way and they tell you to take a pregnancy test in 2 weeks. TWO WEEKS! Guys, that is like forever when you think you might be pregnant but yet, still have to wait to see if you are. If you know me – you know that IVF did not work for us. Two weeks later I took a home pregnancy test and it couldn’t have been more negative. We were crushed.

I tried to look at the positive things that we learned while we were thinking about what we would do moving forward.

I have eggs
Our egg fertilized on its own
Stacy has super sperm
All my other hormones and levels are normal

We had enough money saved to complete 3 IUI cycles and decided to go that route. When April rolled around we had made it past the anniversary of losing Grey and I just prayed and asked God to please help us, haven’t I suffered enough? I pleaded. I am ready, my heart is open and I am so ready to be a mommy again.

Getting real serious about timing, more follicles, hope and prayers.

After 3 failed IUI and 2 medicated timed intercourse cycles I just couldn’t let it go. Does my body really have some sort of internal clock that knows that I turned 40 and it is now somehow impossible to have a baby? I got pregnant naturally at 39.8 years old, why can’t I get pregnant again?! I researched on the internet and found that my fallopian tubes could have been damaged during my c-section so I asked my RE to give me a hysterosalpingogram, or HSG test to check if my tubes are clear. We discovered that my right fallopian tube is completely blocked. I mean, seriously….WHY WASN’T THAT TEST ORDERED MONTHS AGO? I had to take that day off of work to come to terms with the results of the test, because…my right ovary is my super producer. During one of my cycles I had 4 follicles on the right another time I had three and another I had two. For two of my cycles I had nothing on the left side and others, just one. All of that time and energy spent and I feel like it was for nothing. I know we would have made different decisions if we had this knowledge months and months ago. With our finances dwindling, continuing with treatments does not feel like it will get us our baby and it is time to move on to other options.

Stacy and I had already started looking at other options on how to bring a child into our lives. I must admit that I am coming to terms with the fact that my biology will likely not be in the equation and that is hard, it’s just very hard. But then I think of all the things I have been waiting to do with my child, sometimes my heart feels like it will burst with the love that I have to share. I know that whatever is decided we will be ok as soon as that little soul enters our lives.

I would love to connect or hear from other moms that have taken alternate routes to parenthood, please leave me a comment or send a message.

You made me the happiest mama in all the land, I love you ~March 4, 2017~

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

SIDS

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/