I don't know if this is right, if i am writing for everyone to hear to get some help or if I am just writing for me to write. It doesn't feel real. I've never done a blog or discussion board before. But i followed a link on neonatal death to here and it said it helped and i will do anything that helps just now.
I am a doctor, so is my husband. We have a beautiful 16 month old healthy daughter and our baby boy was due 2nd May. After an uneventful , healthy, low risk pregnancy I started my maternity leave on the 10th April-excited to have the nesting time to cook, decorate and prepare for "The Peanut" arriving.Had a tiny bit of blood on loo paper thursday morning but no show or leaking waters.On friday 18th ( 37 weeks +) at 9pm I woke up with an aching right shoulder-like a badly pulled muscle or strain -it got worse over the next few hours so I went downstairs to get a hot water bottle and take paracetamol. Didn't want to keep my husband B awake I got more and more uncomfortable , developing abdominal pain esp under my right ribs and eventually called labour ward who said to come in. I called my husband down who was a bit shocked at the state of me but i didn't want to disturb our daughter for no reason so i called an ambulance to go in to get checked. By the time they got here I was on my hands and knees and eveyryone was thinking i was in labour or something had happened with the baby. I was taken staright to labour ward given an ultrasound which showed the baby was fine, I was not in labour but that my uterus was contracting( irritable they said) so I was given diamorphine and settled over the next 12 hours. urine test showed possible infection so antibiotics given. Then I started to get a temperature. So I was kept in and monitored and after 1 day of shivering ( rigors of high temp) changed to intravenous antibiotics. Blood tests showed slightly raised inflammatory markers but nothing more specific. Waited 2 more days -still getting temps 'til had ultrasound. Team were thinking maybe gallbladder or kidney infection now. Scan unremarkable and placenta and baby still seemed fine. Obstetrician spoke to microbiology who added in another antibiotic orally- to cover unusual/atypical infections and got a chest x ray-which was normal.
Tuesday the 40 min daily CTG showed a few decelerations so midwives monitored me one to one on labour ward but CTG was normal for subsequent 7 hours.
Wednesday still getting temps so obstetrican wanted a perfusion scan of my lungs- which was normal- no pulmonary embolism.In view of that although our baby seemed to just be running a fast CTG( probably secondary to my temp) they decided to induce me at 38 weeks plus 2 days. I had a temp up to 39 degrees for at least 6 hours that days-shivering and feeling so cold despite intravenous paracetamol to try to control it. I had a precipitant labour- only used a tens machine but our baby henry was delivered quickly at 0215 on thursday 21 April. I was so proud of my self-I didn't shout or scream or swear-my mum was birth partner for first half and my husband was there for pushing stage onwards.

Our midwife was amazing and so we were shocked when the baby came out blue and quiet. The cord was around his neck but that was sorted out and the neonatal docs. said he only needed 2 assisted breaths and his Initial Apgar 2 became 9 at 10 mins.We were so frightened that he had been starved of oxygen and would have cerebral palsy but the neonatal docs. reassured us and when we saw him on SCBU everyone was smiling. I went back down to postnatal ward exhausted but happy. Our 3.3kg(7lb4oz)baby boy Henry had arrived!!Hopefully now I would stop having temperatures and they could take closer care of our baby Henry.A lumbar puncture the next day was borderline for neonatal meningitis so Henry was given IV antibiotics too-planned for 10 days.
In the morning ward round the paediatricians again reassured us and all Henry's examinations and medical observations were encouraging. I continued to spike a temperature for the next 36 hours so my medical team continued to worry about me with more blood tests. I was hand expressing and breastfeeding and pumping to give Henry as much milk as I could. Over the next 2 days Henry continued to improve-his monitoring reduced and he was out of a incubator and the feeding tube ( for top ups of formula when my milk was not enough) was removed. I went up 3 hourly to breast feed.We brought grandparents and our daughter in to see him. A first family photo ;-).So overjoyed that he was recovering from his rocky start without any longterm problems apparent.My husband, B did some skin to skin/kangaroo nursing and the worry slowly slipped away.
I cannot tell you how wonderful it was when the next day they brought him down to my room ( 4 days old) as he was "too noisy " ,"too well" and wanted his mummy!! I grinned like a cheshire cat. To hold him was bliss. My Mum and daughter visited, held him, stroked his face. Neonatal docs planned to complete course of antibiotics- go home 1st May!! Hooray!

That night Henry was in his bedside cot or in my bed as i just felt that wonderful glow of closeness and i took photos and stroked him and fed him every time he squeaked (Midwives telling me off-I must rest etc..)He was so beautiful. He had my chin! Such soft, soft cheeks and slate grey eyes and to feel him grasp my finger in his hand was paradise! The next day( 5 days old!) my husband came to visit - found me with Henry on my chest and a BIG SMLE on my face-so just the 3 of us could spend some time together. We had a wonderful day listening to classic fm and cooing over him. Such a sense of peace and grace and calm for the 3 of us.Neonatal docs checked him again. We took photos of him sleeping and really, finally started to relax. He was OK! My husband went home to put our daughter to dinner/bath and bed. Henry needs his antibiotics so we trundle upstairs but his cannula has tissued and it takes the registrar 3 goes to resite it and take some blood. While the needle is put in his hand I give him my finger to suck and his eyes are open looking at me ."Oh brave boy, you are SUCH a trooper".

Finally! we go back to our room and I just enjoy the time cuddling Henry-laughing at how drunk he got on breast milk.Changed his bottom-wrestling with boy bits and trying not to get wee'd on!He did a proper breastfeeding Poo too ;-) No more meconium. Yay! I had NO temperature all day-we were both on the mend!! Sweaty occasionally but apparently that happens as your milk comes in-Fab! So feeling reassured, relaxed, hopeful and content i put my beautiful delicate boy on my chest to burp and kissed his head and breathed him him and enjoyed the cuddle-drowsy and content.
The next thing I know I jerk alert-something is wrong.Henry's breathing is not right.He's gasping. I pull him off my chest and he is limp and floppy and blue. I hit the alarm the care assistent comes in seconds and I say "Get the midwife!!" . I do a sternal rub( to stimulate him-his he just asleep??) he squeezes my finger but then I see he does another abnormal gasp. He's apnoeic- I can't make him respond.
The midwife is in in seconds. I look at her and she grabs him. I am saying "Oh God , oh God Henry-his breathing !!" and shaking. I know he has stopped breathing. She and I run to the resus trolly with other midwives coming either side to hold me up. My slippers skidding on the floor. I'm wretching and shouting for Henry.The midwives squeeze me take me next door as the paediatric crash team pile in to work on Henry.Then i remember having my head in my hands, screaming and howling. They phoned B-he was there in 15 minutes. His face as white as a sheet.He holds on to me. I am cold and blank-I recount so far. I am numbly waiting for news. He says-"I think he's gone. "
The obstericians face is tear streaked and worried. Apparently Henry responded initially well . I was so afraid I had fallen asleep while he was in trouble and not acted fast enough. They tell me his initial improvement means I was sensitive to the change in his breathing and acted fast-thank god.
But then an hour passes- still they are all running i and out.The obsterician anad neonatal consultant come in. Their faces say it all. He isn't responding-he's dying. His heart rate is too slow. There is nothing they can do.
They bring him to us while he is still making a few breathing movements and his heart is slowly beating.He dies in our arms while we sing nursery rhymes, lullabies and kiss his face, his eyes, his hands and his feet. He drips blood onto my husband's hand- we taste it- to take him into us somehow.After a few hours the neonatal consultant comes in and examines him and says he has definately gone. They talk about a postmortem. Have seen them before , understand they are needed- wnat answers why this happened. We hold him longer- can't leave him alone. The taste of our tears on his forehead is so strong. I can't stop kissing him. He looks asleep.My husband is dissolving.We ask the midwife to take photos of the 3 of us. They do and tell us that one of them will sit with him with the light on all night, with classic fm on so we are not leaving him alone or in darkness. We swaddle him in the blanket he had since birth( knitted by a friend of my mum's),Cut off a lock of both our hair and place one in each hand, kiss him again, tuck in his teddy from grandma and say good night and goodbye. My things are thrown into a cab. I am still in my pyjamas.We run home to our daughter.
That was 6 days ago. He has now been dead longer than he was alive. It is like a bad dream. But I 'm not going to wake up. The doorbell isn't going to ring-"I'm sorry there has been a terrible mistake-someone else's baby died. Here is Henry!" . This is real. The gap between what SHOULD be and what IS- feels too immense to be real. Storms of weeping have stopped long enough for me to write this.
Can someone help me?

Oh, Sally, I am so sorry for the tragic loss of your beloved Henry. I'm so happy you had those wonderful days with him (and it sounds like you really took so much joy in his presence), but I'm so incredibly brokenhearted that he was taken away. I wish there were something I could do to truly help, but all I can do is tell you how sorry I am. This place has been a huge comfort to me, a place of truth and beauty where I can be in the company of sad sisters who know what this feels like. It will never be okay that Henry died. But it does get easier. My daughter Pearl (also my second child) died 11 months ago of a cord accident at 36 weeks. Although I still miss her terribly, and always will, I feel so much better than I did in the first few months. The loss of a child is horrible and brutal, and I'm so very sorry that you find yourself here. These are stupid sayings, but true nonetheless: Hang in there. One day at a time. Let your family and friends hold you up as much as they're able. It will not be easy, but you will make it through this. xoxox

I'm so, so sorry, Sally. There just aren't words for how horrible this is. When my son died it helped to come here and know that everyone understood, but really there is no feeling better right away. Let yourself feel what you feel. Your Henry is precious and loved and very very missed. I wish there were a way to ease this pain. It really is true that only time will help. It's been 16 months since I said goodbye to my Aiden and I still miss him every day, but I am happy now and the pain when it comes is not so raw. My only advice is to hold your daughter and husband close and cry, or scream, whenever you need to. I'll be thinking of you. Remember to take care of yourself.

Your story made me cry. I am so, so sorry for the loss of your precious son, your beautiful Henry. It's so senseless and unfair. I am so glad your midwives cared enough to make sure he was not left alone and in the dark.

The pain will get worse (seems impossible I know) before it gets better (and that will bring issues all its own). But we will sit with you and remember Henry with you.

I'm so sorry you need us but I'm glad you've found your way here.

Oh, Sally. I am just so sorry and sad for you and your family. My heart breaks for you, knowing you are in the early days and depths of grief. There are no words to make any of this better. Know that you are not alone and that we will remember Henry with you. I'm sure he was gorgeous. Henry is a beautiful name for a beautiful boy. Sending you much love.

Sally, I am so sorry for the loss of Henry. It is all too unfair and unbelievably heart-breaking. I wish there was some way I could help you but I don't know that there is. But I will remember your son with you and be here when you need to talk about him and how you are feeling. Sending you and your family love during this terrible time.

Sally, sweet, heartbroken mother. I am so, so sorry. I am crying with you, that your beautiful Henry isn't here. It's so wrong.

I don't know if I can help you - I can listen. I can read. I can tell you that, unfortunately, you are not alone, that all of us here are sitting with you, tears in our eyes, hearts heavy, ready to hold you close and sit silently with you while you wail and despair.

Right now, everything will feel a bit too much, a bit too surreal, a bit too hard. And you will feel that way for awhile. And your family will be just as shell-shocked. Right now, all you need do is keep breathing. Other things will come in time. It seems impossible to think of now, any time in which this crushing disorientation will cease to be - but it too passes, it won't last forever.

For now - there are plenty of things to read through in the archives if you like. Jen - one of our contributors - lost her little girl a few weeks after birth, in a sudden affliction. Jeanette - one of our regular posters, whose blog can be found on our other forum page - lost her daughter Florence shortly after an otherwise normal, healthy birth. Sometimes it helps to know someone has gone through something close to what you have - sometimes it helps to have a guiding light.

Oh, Sally. I wish I could hold you right now, and be with you. If you need someone to chat with - I think we're on different continents - please email me. I'm nearly always reachable at eashepard@gmail.com.

We are thinking of you, your husband and daughter, and your precious, loved little Henry.

I'm so sorry, Sally. Your loss is incomprehensible. Thank you for telling the story of precious Henry's life. His life mattered, and he is infinitely valuable. With love and sadness...

"The gap between what SHOULD be and what IS- feels too immense to be real."

Yes, oh yes. Dear Sally, you may find in the days and weeks to come that the world is a newly strange place. I hope you can find comfort as I have in this place.

Much love,
Christy

Dear Sally,
My most heartfelt condolences on the loss of your precious son Henry. It has yet to get any easier for me to welcome anyone here to Glow, and in the depths of the earliest days, I know how bleak and scary and horrific your world must feel. I can offer that this place has been my lifeline in the (almost 8) months since my son died (36 hours after his birth at 41 weeks).

I remember my early days, hearing "it will get harder before it gets easier" from women who have walked this path before me and that thought just absolutely terrifying me, feeling/knowing that it couldn't possibly get any harder than it felt at that very moment. I think, in retrospect, it helped me to hear that it *shifts* - sometimes for the "better" and sometimes for the "more difficult." Grief is an ever changing and morphing phenomenon, and I don't profess to be any sort of expert over it; I can only offer that I have become more intimate with it in the last 8 months than I would ever wish anyone to have to...There will be days where you aren't quite sure if you remember how to breathe, and there will be days where you take a deep, nourishing breath into your lungs and know that there is beauty, and even comfort, to be found all around us in this confusing world. I do know that the intensity of the shock you are currently feeling, at least in my own experience, will shift significantly over time.

Please continue to share here with us, or just read along silently, or bookmark this page if it all feels too confusing and raw for you to be here just this soon. For me, I found glow in the very early days of my loss, but it wasn't maybe until a month or so later that I started to feel comfortable sharing "out loud." Know that we are all sitting beside you, albeit virtually, abiding in the pain of your loss.

My email is linked to my name, and please know you can email me as well, anytime. Even if you just need to tell me Henry's story, again. Or tell me how missed he is, how loved he is.

As you can maybe see from the responses above, this community does not allow a mother to grieve her child's loss alone. The women here understand me in a way that no one else can, and for that, I am eternally grateful.

With love, and care, and again, my most heartfelt sadness at your loss,
sarah

Dear Sally,

I am so sorry you have lost your son. I lost my little boy Freddie this time last year; like you he was born in difficulties but without obvious cause and he lived in SCBU for a while. He even seemed to be getting better, though never as well as your henry seemed to be and then he got pneumonia and died.

What you are going through is terrible and dark and difficult. It is a long road; you will get to a new normal, but it will take time and you have to learn so many things about how to live with this.

But you will make it.

I've been saved by my blog (you can click on many of our names, mine is called patchofpuddles, I have other living children) and by reading and communicating with others, both on blogs and here.

We'll hold you up and keep you going. Come and find us.

Oh, Sally, I am so sorry that your beautiful Henry can't be here with you. I know the feeling of wishing that it was all just an awful, terrible mistake because it is so awful and terrible that you just can't believe that it can be real.

You will survive this. It may not seem possible, but you will. You used the word "dissolve" and I believe that, in losing a child, our old selves dissolve. Our hearts and souls fall apart. But, over time, you will put yourself back together. You will never, ever be the same. The scars will never leave... but you will be a close enough approximation of yourself. It will take time... maybe even a lot of time... but it will happen. It will just be a new "normal."

I am so glad that you found us. This place is a safe haven. We all understand. We will cry with you and rage with you and question the sad ways of the world with you. Most of all, we will remember your Henry with you. Please come back to us whenever you need support because we will be here for you.

You, your husband and your Henry will be in my thoughts, Sally.

Sally, first off, I am so very sorry, there is no pain greater than this one, and it is so great I know you feel you are drowning (and you are, truly, there is no lying about it or prettying it up). Our own son was named Henry as well, he passed away three and a half days after birth August 7th, 2009. Reading your story was quite painful for me, and I know writing it was beyond that.

Will you survive this? Yes. Will you want to? Probably not for a very long time. You are in the hardest stage of all right now, the most painful and it so difficult to see when you will not feel that huge grief that is suffocating you. I am almost two years out, it is starting to get better. I am not healed. We will never be healed, any of us, but I do feel joy again, I do laugh, I do want to get up in the morning. You will feel that too. For me it started to get better at about the 6-9 month mark, but I was also pregnant again which gave me a sense of hope.

My best advice is to hold tight to your daughter, let her save you, let her be the reason why you continue to take your breaths. My son is the only reason why I survived our own Henry dying, he truly saved me from myself.

So much love to you. Please write me personally if you ever need to vent or have anything you want to talk about: mindybizzell@yahoo.com

Oh no. I'm new enough to posting here that I haven't seen that many moms arrive. It breaks my heart and I welcome you just the same.

The world will feel a very foreign place for a very long time. I didn't come to Glow for many months. I hope you know there is a community here for you and Henry. I am so sorry he is not with you. Take good care of yourself, especially during these early days, and Go Slow.

Oh sally, I am so desperately sorry for the loss of your Henry. Reading through your story and knowing that moment so well when everything changed forever is still so painful and its 8 months on for me.

All of the women above have so beautifully described this journey and I hope this will bring you comfort I just wanted to share some really simple practical coping skills that helped me.

I found in the early days when that terror and panic grabs you so frequently that talking to my son helped - I felt it brought him closer to me, I would feel much more calm after having talked to him, at times my hb and I talked to him out loud together.

In the first few weeks we immersed ourselves in nature, just listening to the tress rustling or waves on a beach made me feel my sons presence. Noticing the sun shining or the stars at night felt right.

Someone told me to treat ourselves like children - nurture yourself and do exactly what you want to do, take everything so slowly and gently, get back to the basics of surviving.

For me a simple breathing exercise, firmly rooting my feet to the ground and paying attention to my breathing was very helpful, it got me though some really difficult moments. As another poster said, just feel what you feel.

I'm not sure any of this will help but I really just wanted to reach out to you.

I wish you peace and strength on this journey.

I am so sorry for your loss, Sally. Henry's story is heartbreaking. The loss of a child is among the worst things a person can go through. I know what you mean by wanting it to be a dream. Two years have passed since my loss and some days I still wish that was all a bad dream.

These ladies gave you wonderful advises. I will just add, be patient and accept grief. It comes in different forms and changes through time. I found it very helpful to read what other mothers in the same situation had to say about their feelings and thoughts. It made me understand what was happening to me and assured me I was not going crazy.

I wish you can find peace soon. Again, I'm so so sorry.

Sally, I'm trying to think of some sort of comforting words for you, or just something...

Nothing can take away this pain you're feeling, this just shouldn't be and your son Henry should be there in your arms.

I agree with all the honest, heartfelt words of wisdom above. I am in my 8th month of grieving my daughter and I'm trying to remember some points that helped me in those dark days.

Know that you're not alone; it is a well worn path and there is so much take in.
You decide what you are ready for, but be gentle with yourself.
Lean on others, let them take up the slack.
Keep communications open with your loved ones - although that is one of the most difficult things I found.
Its okay to fall apart, it takes time to function and get to know you again.
You will not forget Henry or those precious memories you had together, you will treasure those as the pain gets easier to manage over time.

Know that losing your child is the hardest thing that you will ever have to live through - but you will live life again, find joy and happiness too. But that is for later; right now grieving is a way of loving him, let yourself love him Sally. Miss him and let your heart ache without restriction.

Remembering Henry with you

Sally,

I am so, so sorry for the loss of your beautiful Henry. You are not alone in remembering him.

Many of the ladies above have given you great advice. I'm almost 9 months out now from my loss and I remember in the early days how much I time I spent on sites like Glow, just reading and absorbing other's stories. It made me feel less alone.

The one piece of advice I can give is to just let out the feelings. Scream, cry, get angry...whatever you need to do. Just let it out. I tried at first to keep the anger inside since I didn't want to upset anyone, even my husband. But, it built up and around 2 months in, I just lost it...screaming and sobbing in the shower. Not a pretty sight for my husband when he walked into the bathroom. And it scared him tremendously. And to be honest, scared the hell out me too. If I'd maybe let it out earlier, or more slowly over time, maybe I wouldn't have exploded quite so much. You are allowed to be angry. You have been robbed of the most precious thing, your son Henry. It's not fair, it doesn't have a purpose, there is no reason good enough for him to be gone. If anyone tries to tell you differently, they are plain wrong.

Remembering your baby boy with you.

Dear Sally,

Loving and grieving your beautiful Henry with you. All I can do is sit here with you and cry with you, but that's what I'm doing. I'm so sorry.

Sally,
I'm so sorry that you lost your son Henry. Your story and Henry's story was so filled with moments of uncertainty and reassurance. Your feelings of pain are palpable. I am sitting with you in this pain. You are not alone.

Oh Sally.. my deepest condolences to you. I am so very sorry for the loss of your precious Henry. I know that these days are among the most difficult you will face, and while I am so sorry that you have had to find this place, my heart is lifted to know that at the very least you will find those who completely understand and can off you tremendous support.
Many of us here have living children as well.. I just wanted to encourage you to reach out to anyone whose voice you connect with as this journey is undoubtedly one that can be made lighter with the support of those who understand what you and your family are going through. My heart aches for you, your husband, and for your daughter as you grieve the life of your beloved Henry and adjust to this new life you have found yourself thrust into.
Sending you much strength and light....

Thank you to everyone who replied. It has been 3 weeks and I have just felt up to reading this site again.Your messages help me feel less alone. Will keep going, am mum to my beautiful girl and wife to my wonderful husband.Will keep breathing. Funeral in 7 days time. Makes me feel sick thinking about it. At least we have been lucky enough to be given a plot that means when we die we will be buried with him.It is a comfort to know we will be physically close forever in time.I think it will probably be the last thought that will go through my mind as I eventually die. That thought brings me a little peace.