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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

for one and all > Newly Loss Mom

Hi Glow Community,

My husband and I lost our first borne, our son, Carter in February. It's a pain I have no words for. I've been reading the forums and articles for the last few weeks... I just now feel I'm in a state to share and gain some guidance.

I had a uncomplicated pregnancy. Our little guy was super active. Always moving around and kicking. We had a ultrasound at 32 weeks scheduled for February 6th. The ultrasound went well, the technician even joked about him moving so much she couldn't capture a good picture. 8 days later my life forever changed.

On Valentine's Day, I noticed he wasn't moving around as much as I was use to. When I got home from work he was still pretty quiet. I called the after hours line and explained; their recommendation was to come in. To paraphrase a really long story, I was admitted to Labor and Delivery due to decreased fetal movement. Heartbeat was strong but he wasn't moving around. I was placed on continuous 24 hour monitoring. The next morning, 2/15, I had a BPP test (Biophysicial Profile Test) - measures movement, heartbeat, breathing, tone. The total score a baby can get for that test is a 10. Our sweet Carter scored a 2. It was horrifying to hear that number and it was even more horrifying to see my once super active boy completely still on the ultrasound screen. The high risk OB physician was concerned about the perfusion to his brain. She recommend an immediate C-section.

Carter was delivered on 2/15. I was exactly 33 weeks. He was rushed to the NICU and put on a ventilator. After 24 hour EEG monitoring and a MRI my husband and I were told that Carter had suffered significant brain trauma due to loss of oxygen in utero. He was not going to be able to live a meaningful life - he would be confined to 24 hour care and likely have a short life span. My husband and I were devastated and made the most difficult decision we've ever had to make. We did not want him to suffer. We withdrew life support and held our sweet boy as he took his final breath. That was February 18th, 3 days later.

In a matter of 4 days my whole life changed. I was pregnant. Then I wasn't pregnant. Then I had a beautiful baby boy. And then I had to say goodbye. One of the biggest struggles is this feeling like I'm 'crazy.' It all happened so fast that I can't really wrap my head around it. Was I really pregnant? Did I get to spend 3 days with my son? Which, then I feel guilty and ashamed for even thinking because OF COURSE it happened!

This grieving process is just so much. I can have a handful of feelings within 60 seconds of each other. The shock, pain, sadness, guilt, devastation, longing and yearning is almost too much to handle. The questions that plague my mind - the "why's" and "what if's" and the worst one "should I have known/did I miss something." The physicians can't explain why the perfusion to the brain just stopped (we are waiting on autopsy results - as of now the placenta and cord were all functioning properly). I mean, 32 weeks he was perfect and then 8 days later, we are in this unthinkable situation.

How do you deal with all of this? How did you get through those first few months? It's so isolating. I feel I only connect with people who have been in this situation. I'm heartbroken. I just wish I could hold Carter in my arms again. I feel like part of me died when he did. There is this gaping hole in my heart. I was so ready to take on this new chapter. I'm trying to be grateful for the time that I did have - I was able to meet him, hold him, and most importantly shower him with love. But, right now, the pain is overwhelming. It's all I feel. Pain. Numb. Cold.

A newly loss mom,
Jenna (Carter's Mom)
March 21, 2017 | Unregistered CommenterJenna
Dear Jenna,
Firstly, how very sorry I am that you find yourself here because it means you have suffered the unimaginable. But I'm glad you have found us, because we are here for you. We can empathize with and sympathize with your pain and suffering, your sorrow, devastation, anger, fear, guilt, all of it. Because we've been there and are there, right with you. You are not alone. Our Evelyn passed away 7 months ago and all of what you are describing is just how I remember feeling those first early weeks. Others on here gently reminded me how little time had gone by, and how raw and fresh it all was, to be patient and compassionate with myself, and to allow myself to feel everything I needed to feel. I was validated as a bereaved parent and assured that I wasn't crazy. So now it is my turn to comfort another and reassure you that you are not crazy. Not at all. You are grieving your Carter, your child, and that is indescribable pain. My motto has been 'one day at a time.' Because that's all we can do. That's how we manage, how we cope. I have so much else that I'd like to say but I'll stop for now -- just know that we're here for you. This community is a lifeline and I am grateful for it every day. I hope you feel the same as time goes on. Sending love and hugs to you from afar. Your Carter is in my heart.
March 21, 2017 | Unregistered CommenterMelissa
Dear Jenna, I am so sorry for the loss of your sweet, perfect Carter. Oh these first few weeks are awful. The shock is so huge, the grief so raw, everything upside down, and really, at the beginning, feeding yourself, taking a shower, getting out of bed, it's insurmountable. I found comfort early on in something I read here (digging through the archives): be patient, gentle and kind to yourself and ask those around you to do the same. I also loved reading that grief is love, turned inside out so I add loving to patient, gentle and kind. What helped me a little later was finding a good therapist, one who specializes in this kind of loss and joining a support group. I found ours in our area through the MISS foundation. They run groups for parents who have suffered a perinatal loss. Sending you lots of gentleness, kindness, patience and love.
March 21, 2017 | Unregistered CommenterAB
Dear Jenna,

I'm so so sorry for the loss of your Carter and that you find yourself here with us. I am also a relative newcomer here. Glow has been a source of community and comfort, both things that I haven't been able to find much of "in real life" since losing our son Raspberry with a very similar story in December. Everything is still so fresh for you. The pain is raw. It will hurt for a long time. But you will keep breathing. Remember, you are forever Carter's mother and your love for him is everlasting and unconditional and limitless.

We are here for you.
March 21, 2017 | Unregistered CommenterSteph
Dear Jenna, I am so terribly sorry for the loss of your gorgeous boy Carter. Even though we all wish we weren't here this is good place to find. I lost my daughter Eleanor 4 months ago today. She was born by emergency c section at term but died a few hours afterwards. It is the most awful pain to go through and the emotions are horrific. You are also still recovering from major emergency surgery which just adds to the misery. I was actually quite glad of the physical pain as it gave me something else to focus on too. I echo the words of AB be patient and kind to yourself. Allow your loved ones to be kind to you and be kind to them too as they are also hurting.
I also feel that a little part of me died with my daughter and I think probably aspects of us do change so profoundly that feels like that. Seeing joy in the world, the happy innocence - all gone. Hopefully only gone for now, I still haven't got them back but I can see some good things again, the love of my husband, sister and mum, the support of my dad- which has surprised and impressed me and the beautiful magnolia tree in my neighbours garden which reminds me that Spring will still come. All being said I am still crying every day but as others say it is only because we love them so much and wanted them so much.
I also found that in the first few weeks just trying to do something small for you each day, going for a walk round the block, cleaning your teeth, eating something you like - although it seems futile and pointless for a while- becomes part of your day again.
Wishing you lots of love, remembering Carter too and wishing you all a peaceful day today
March 22, 2017 | Unregistered CommenterKE
I'm so, so sorry for your loss. I lost my daughter, Eilidh, on 2 February when I was 36 weeks pregnant. She was stillborn. It's been super hard, but I've been very grateful for communities like this. One thing that I hear echoed so many times is how isolating it can be after you have a loss. It definitely helps me to connect with other parents who have been on the same journey.
March 22, 2017 | Unregistered Commenterkiaulune
Thank you so much for all the wonderful and encouraging words. I feel fortunate to have found a community where we can all support and comfort one another. No one knows our pain like we do.

Melissa, I am so sorry for your loss of your sweet baby girl, Evelyn. She is in my heart. I agree with the motto "one day at a time." After another day ends, it's another day we have persevered. Loss Moms really are the strongest. I hope to be in the same position in 7 months where I can offer support to a new loss mom. Though, I hate that there continues to be newcomers to this club we didn't sign up for.

AB, thank you so much. I love what you said.. grief is love, turned inside out. I'll think I'll add that to my collection of quotes. My husband and I have been attending our local HAND chapter (Helping After Neonatal Death) and find those immensely helpful. Just being around similar people is therapeutic.

Steph, I am so sorry for your loss of Raspberry. He is in my heart. Returning to "real life" is so difficult. And we have to create our "new-normal" because nothing is the same. We are profoundly changed. I hope that you continue to keep breathing as well.

KE, I am so sorry for your loss of Eleanor. She is in my heart. I imagine 4 months is still fresh. I don't think you can experience this type of loss and not be changed. I agree, seeing beauty is hard right now. But like you, I am holding onto my husband and family. Finding comfort where I can with walking and writing in my journal. Hopefully the beauty will return to us one day but I imagine it will always be a little tainted. Knowing how precious life is and how quickly it can change.

Kiaulune, I am so sorry for your loss of Eilidh. She is in my heart. With a similar loss timeline I imagine you feel a lot of what I feel. I am glad you found the Glow community. It's nice we can have a place to turn to.

Sending love to all of you. Wishing you a peaceful day.
March 22, 2017 | Unregistered CommenterJenna
Hi Jenna. I am so very sorry about the loss of little Carter, and that you find yourself here. I have lost my 5 1/2 week old son Brandon back in December so I am also fairly new, but what I can say is that grief comes in waves, sometimes you have fairly calm moments and, like a massive wave it washes over you before you know what is coming. I hope you are sleeping ok, sleep has been and still is a big issue for me. I am glad you are getting help from a support group and from family. Do whatever you need to do to let some of the pain out, wail, scream, cry, whatever you need to do... wishing you peace.
March 22, 2017 | Unregistered CommenterCristiane
Oh Jenna,

I am so sorry. You've found the right place, although I'm sorry you have a reason to be here.

It's hard to escape that "I must be crazy" feeling. Thoughts like, was I actually pregnant? Did I really make it that far? I actually thought I'd bring a baby home? My daughter's perfect nursery and my neatly packed hospital bags are like bizarre artifacts from some museum about my distant past. And then there's crazy mixed with what-ifs and guilt... Was I crazy to think things were going okay at X point in time when maybe they weren't? Was I crazy to assume that this uncomplicated pregnancy would remain that way?

I'm sorry the "whys" and what-ifs are plaguing you. I really don't know of anyone in these shoes who hasn't wrestled with those a whole, whole lot. Especially when there are so many examples of others all around us with live, healthy babies, it's really hard not to think we must have somehow done something wrong, not noticed something someone else would have or that we should have, etc. "Should I have known?" and "Did I miss something?" are two of my biggies as well. There's a thread earlier on these grief boards that Nada started that was called "Addressing guilt with logic." I might encourage you to read that thread. It helped me a lot, and I vented a lot of my feelings into it as well. I continue to need logic to basically attempt to talk myself out of some of the guilt. Sometimes it works a bit; sometimes it does not. I do have to remind myself on a regular basis that I had an extremely healthy pregnancy with no risk factors or red flags - so why would I have thought I needed to be on the lookout for some sort of looming tragedy... which would have been completely out of character for how the entire rest of my pregnancy had panned out, and would be unprecedented in my entire world/network. I have no example of anyone needing to behave in whatever sudden, unexpected, heroic measures I would have needed to magically do in order to save my child. Yet I continue to daydream every day about doing just that - magically, heroically saving her. It's in my nature; I'm her mother.

Jenna, the first few months are really, truly, soul-crushingly, hauntingly, searingly awful. I'm really sorry that you are in that initial season. The pure torture of that initial phase changes a little over time, but the pain and longing and raw grief remains. Still, when I think about the first few months, I'm scared for my life. I wanted to die. My best advice is just to "do the next thing." Meaning, stay alive until you eat something for breakfast, then stay alive until you have lunch, then dinner, then until you brush your teeth, then until bed, etc. At first those initial markers of time were as far-reaching and ambitious as I could do. Slowly the sense of time has mostly returned, where I can think about days from now without my mind shutting down. You might not be ready for this yet (I know I wasn't at first), but eventually you might somewhat enjoy pampering yourself a little. You might not even feel right about doing that at first or for a while, but I feel like it helped some, at least to get through the days. Things like taking a hot bubble bath, or going to a movie, or doing a home project. My self-concept has taken such a beating after failing to bring my daughter safely into the world - I have had to remind myself that I'm still good at anything. Even if that's just folding a load of laundry - I have had to prove to myself that I do know how to do that well. I might not know how to bring a live child into this world, but I know how to fold a damn load of laundry. It's sad and feels pathetic, but I think it's important to rediscover things that make you, YOU. Things that you are good at or have an interest in. It's been a slow and grueling process.

You're already doing this, but I'd also encourage you to use these Glow boards like a lifeline. They are crucial. Sometimes I'll be going about my day, feeling incredibly sorry for my reality and how it feels like I'm the only one in it, and I'll think about Glow and stories I've read here and will immediately feel a small measure of comfort. It's so important but difficult to feel fully understood, which is where typical support systems can fall short, especially if they involve people who are enjoying their live motherhood. It's no fault of theirs, but it's hard for us. You might even find comfort in reading some stories from parents who came long before you. I go back to really old threads sometimes and can hear my own pain in those parents' writing. It helps me to feel slightly less hand-picked for misery when I know others are fighting these same battles.

For what it's worth, it sounds like you did everything right, everything a human could ever know to do, and more. You noticed something concerning, you acted on it, you got to a medical provider quickly, you had testing done, you had a surgery that you knew would provide Carter the safest delivery at that point. I can't think of one thing you could have done differently or should have known. And like you said, your pregnancy was uncomplicated in the first place, so why/how would you suspect anything like this to happen?

You mentioned feeling so ready to take on this new chapter. I hear you on that. It's so cruel to be one thousand percent ready for this life change, and then you're back at your empty, silent home, like, "Now what??" The lack of activity or hustle-bustle or round-the-clock to-dos... It's so, so sad. I don't think there was anything that helped that hollow feeling for a long time, but eventually I found other ways to keep busy. Things that were satisfying for me and also still felt productive, like redecorating a room or doing yard work. Once I returned to work, that helped with rebuilding a pace in my days, but it came with its own endless cruelties - so that's another story.

My biggest outlet then and now is writing. I hope that whenever you feel that surge to express yourself and your feelings, you'll come here on Glow and spill. We will gladly read and respond and relate.

Hugs and love to you and Carter. xo
March 22, 2017 | Unregistered CommenterNM
Dear Jenna, I am so sorry for the loss of your beautiful son, Carter. There are no words to describe the kind of heart break that such an experience brings. My heart and thoughts go out to you. I have a similar story from a year ago. In February 2016, at 33w6d pregnant, I went to see my OB for a routine check up, two days after I had my 3rd trimester ultrasound with very normal results. At the appointment, my daughter's heartbeat was shown to have fallen to an adult's level. I was rushed to the hospital for an emergency c-section. It turns out her umbilical cord was knotted and wrapped around her ankle and neck several times, leading to reduced oxygen flow. EEG and MRI test results showed severe brain injuries as a result, and we also faced the very difficult decision of taking her off life support. When she was 4 days old, the ventilator was taken off, and she passed away peacefully in our arms.

Over the past year, I have been consumed at various times with disbelief, anger (and at times, rage), anxiety, guilt, feelings of failure, frustration with friends and family, but also instances of positivity and gratitude as I have remembered the moments I had with my daughter and as I reflect on my own resilience in persevering through one of the most unimaginable tragedies that a person can suffer. My advice is to be very compassionate with yourself - there will be times when you feel like you are finally moving to a better place when suddenly intense grief, anxiety and/or anger washes over you afresh. I have learned that it is better not to fight it and to allow yourself to feel it. I have leaned upon a handful of close friends and family who have been most compassionate and supportive. I have resisted calls from others - including my husband - to "push" myself "out of my comfort zone." I have skipped all baby showers, children's birthday parties, family events, and weddings to avoid babies, discussion of babies, people who have recently had babies, and certain family members who are highly likely to make insensitive remarks about my dear baby. My relationships have forever changed as a result - some for the better, some for worse - but that happens throughout life with various types of experiences, I suppose. Self-preservation measures have been critical for me, and I find that compassion for oneself is paramount. Over time, the tears will flow less frequently, though know that there is no time stamp on grief - it has been over a year and I am now 4 months along with my second child, and it does not change the pain I feel or the anger and jealousy evoked by seeing or hearing about another pregnant woman.

Practical steps which have really helped me cope have included exercise as well as yoga and meditation/mindfulness classes. Journaling, including writing about what I am grateful for or happy about, has helped me express my emotions and try to shift to positive thinking. I also joined a perinatal loss group at my hospital and have been seeing a therapist regularly, which have really helped me with realizing that I am not crazy and my emotions are very natural given the trauma I experienced. Finally, over the past year, I have taken a number of creative classes to help me express my emotions - from fiction writing to painting to cooking to sewing/knitting/weaving - these classes have been a lifesaver, providing both distraction and emotional release. I have never been a creative person (I work in numbers all day long), and I believe one of the greatest gifts my daughter has given me is this newfound interest in development of my creative expression.

Again, I am so so sorry for your loss. My best wishes as you go through this journey. It does get better bit by bit. Sending all of my love...
March 23, 2017 | Unregistered CommenterZ's Mom
Cristiane, I am so sorry for the loss of your son, Brandon. He will be in my heart and thoughts. Waves is such a good description. In one moment I feel slightly lighter or for a minute find myself distracted and then the pain and sadness hit ten times worse. It's a constant battle of a few ups and then downs and further downs. Wishing you peace as well.

NM, thank you for all the kind words. I will definitely look into that particular post about guilt. It's so true what you said. When we had uncomplicated pregnancies, no risk factors, and no red flags... why would we even think to prepare for some unexpected event? I personally thought I was in the clear. Simply waiting for the day I could hold Carter in my arms. I think there should be more emphasis on things that can go wrong. Not to scare women but to educate. Most believe once the 12 week mark has been met, it is smooth sailing from there. All of us know, all to well, that is just not the case.
I'm working on the self care. It's hard because when I do take a moment for a bath or walk outside I almost feel guilty. Like, how can you be doing this? Your child died less than 2 months ago. Again, I try to turn it around. Carter wouldn't want me to suffer. I don't believe any of our children would want us to be unhappy and suffer the rest of our lives. It's hard but I try to stay strong for him.
It sounds like you did everything right as well. We both know we would never do anything to intentionally harm our child. We are their mothers and would do anything to protect them.

Z's Mom, thank you for your guidance. I'm so sorry for the loss of your daughter. Our stories really are so similar. My heart breaks for you. I know when my husband and I received the devastating MRI results my heart shattered. You just know in that minute there isn't anything you can do to protect your child. And you make the decision that will ultimately destroy you but eases your child's suffering. It is so painful to think and relive Carter's last moments. But I am so grateful we were with him in those final moments. He knew, as I'm sure your daughter did, nothing but love.
I'm actually looking into some creative outlets like you mentioned. I really do find peace in writing in my journal, so maybe a creative writing course. We will continue with our HAND support group and started recently with a therapist.
I wish you all the best with your pregnancy and the delivery of a healthy baby. You will continue to be in my thoughts.

Sending lots of love to everyone.
March 23, 2017 | Unregistered CommenterJenna