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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 > Favor to ask all of you - creating a care plan for the nurses at my hospital for loss moms

Hi Ladies and Gents.

I have been doing alot of soul searching lately and I have come to a point in my grief - I am 9.5 months into my grief of my fullterm still born baby girl-. that I need to help the moms who will be affected by loss at my hospital. make a checklist/careplan for the nurses to go by to prepare and to facilitate the best experience for the parents before their baby is born. I want to do this, as no one walked me through what it was going to look like, what I would/should do to create long lasting memroies for myself and for my family who were there to meet my baby.

Im asking for input. what did you love about your experience with your lost baby? what did you wish would have been done? what do you wish you didnt regret?

For example. I love that my nurse pulled my husband aside on the night before she was born to check in with him. I love that the nurses provided us with an outfit and a crochet blanket for pictures. I loved the professional photos that we got from Now you lay me down to sleep. I wish I had known I could have bathed her, I wish I could have dressed her in her own clothes and swadlded her in her blanket that she was to go home in. I regret not introducing my baby to her grandparents myself, I was too doped up and out of it to know what was going on. I wish I didnt have visitors who overstayed their welcome so that we could have our own time with her. I regret not holding her longer, not talking to her more, not taking in every ounce of her body and weight.

No one gave us a picture of what was going to happen, what it will be like, suggestions for what was to come. I wish they had. I want to make up a package for the nurses, or a love letter to the parents who will be giving birth. So that they love every minute of the time they have with their baby and have no regrets.

your input would be helpful and much appreciated.

Thank you in advance.
January 27, 2017 | Unregistered Commenterstill0517
Hi

I think this is a wonderful idea. I wish we had have had something! Iike this.

I did not get to full term when our little girl arrived one Sunday unannounced. So my experience iis completely different in many ways.

Whilst at full term, and any sane person would expect milk to drop in, making me ormy husband aware that the trauma wasn't over with the birth, but there would be more, milk will come in.

In hospital, we felt rushed to masks decisions, and not all the information was available. Neither of us could process what people were saying to us. In many ways having a leaflet or letter(s) from other loss parents, giving us an idea of what people were trying to tell us. To help us process.

I would suggest that photos are taken as a matter of course. We declined, asdasd I was terrified, then we held her and she was beautiful. She was so tiny and perfect. I never thought to ask them thgen to take photos. So we have none and it breaks my heart that I will in time forget tged look of her nose, her face.

I assume bevcause we were not full term the offer to clothe and wash our little girl was not there. In fact we felt that we had to leave the room really quickly. No one explained that it was OK to stay.

I don't know if my experience counts or helps, but thank you for listening. Thank you from all those that your kind thought will help

Emma
January 28, 2017 | Unregistered CommenterEmma
Thank you for your reply Emma, I am sorry to hear about your baby girl. I am saddened that you felt rushed :( that time is so precious. I want to help other loss moms as you and I are to know that it is OK to take your time, OK to change your mind etc. Hugs to you, your husband and to your daughter in heaven
January 28, 2017 | Unregistered Commenterstill0517
Emma, I had a very similar experience as you when I delivered my baby girl at 18 weeks last January. I woke up in labor and went immediately to the hospital but delivered her about 20 minutes after we arrived. It took another hour before I delivered the placenta and the whole experience was overwhelming. I very much regret that no one offered to take a photo. Luckily the funeral home took her footprints and those are so precious to me. I wish we would have had more time with her but since it was a miscarriage our hospital encouraged us to leave shortly after the placenta was delivered. My dad went like this, 6:30 woke up in labor, 7 got to hospital, 7:17 she was born, 7:25 she died, 8:10 placenta was delivered and we left the hospital at 9:30. I had no time to process what happened and I was just told to follow up with my OB in 7 days. I had no idea that my milk would come in or how to stop it. I had no idea how much bleeding postpartum was normal. It was a scary time. Thank goodness for this and other online communities that discussed late misscarriages/early stillbirth and the women there who answered my questions and helped me sort out my feelings. It wasn't until my followup at my OB that I was given any support info. My hospital has support groups for grieving parents but because 18 weeks is a miscarriage, I wasn't given any of that info.
January 28, 2017 | Unregistered CommenterOliviasmom
My heart aches for you mothers who didn't receive the support you so desperately needed. My daughter in law and son have been receiving help from "Angel Watch" to prepare for the birth and death of their daughter. Perhaps you could contact them to receive some of their materials to help other parents in their time of grief. How grateful I am for the compassionate people who are helping to prepare us to say hello and goodbye to our sweet little baby. Hugs and prayers for all of you.
January 28, 2017 | Unregistered CommenterC
Oliviasmom,

I am so sorry for your loss and the awful treatment you received. I find the fact that between 12 sees and 24 weeks we are in limbo disgusting. There are no pathways to support before during or after. Nothing. It is like we and our longed for babies don't count.

I get that there is very little that can be done to save our babies before 24 weeks. But how we are treated is important. For me, it means I will probably never get to hold and support a living child, as this experience has been so traumatic for my husband.

I was laughed at in A&E, no your waters haven't broken, we can't see the cervix for all the blood go away, stop wasting our time. I sat on our sofa for 3 hours in discomfort, not pain, just uncomfortable, I wentbtobthe toilet and said to my husband I need to push, but if I do our daughter is coming. I had no choice, there she was dangling outside of me, in our toilet bowl. I can still see her now. Her tiny beautiful body. Ambulance came did their business, took us to hospital, delivered placenta in front if those that sent me home. Only because I refused to stay without my husband did we get put in the Berevement room on maternity.
I have been promised that there will be a proper pathway for patients of gestation between 12-24weeks. I will be chasing that.

Stillo517, I forgot my manners and didn't say how sorry I am for your loss.
January 29, 2017 | Unregistered CommenterEmma
I have so many thoughts on this topic. I wish nurses wouldn't have tried to comfort me with their words and platitudes. Things like how they would hold their own babies extra tight, or anything about God, or how they hoped to see me again under different circumstances someday, or how they could tell my husband and I would be great parents. We were beyond comforting. Just say you're sorry, that we're not alone even though we'll feel like it, that it's not fair, that we didn't deserve it, that they'll listen to any questions or concerns we have, that there's no hurry to leave, etc. Don't bring up religion at a time like this, when the patient is someone you don't even know. And I wish they'd been more attentive and observant. I should not have had to call someone to come empty our trash. My husband shouldn't have had to ask if our bathroom could get cleaned (it had bloodstains from a previous patient...). We shouldn't have had to fret over getting more water or basic supplies. I wish I could have stayed longer. I wish they had a better place for my baby to stay when we had visitors and didn't want everyone in the room staring at us at the same time as the baby. I wish we knew we could wash her. Could we have taken her home? I still don't know for sure, but one person who works for another local hospital said you can do that. I was never given the option. Someone should have called and checked on me. No one ever did - not the hospital, not the OB, not anyone from the medical field. I was teetering on suicidal, and no one even knew or cared. I wish I'd held her even longer and hadn't let her leave my sight for more than a few minutes. I wish I'd placed an immediate ban on visitors; I was very overwhelmed by the crowd. Thank you for making a difference for women who will follow in our traumatic footsteps. I felt very unsupported and am grateful for people like you who care.
January 30, 2017 | Unregistered CommenterNM
I wish we'd been allowed to touch him and see him as often as we wanted to (he was connected to machines in another room and we were only allowed in to see him during certain hours) and then the nurses tried to keep us from touching him for fear of "overstimulation" what crap!

When his prognosis was terminal, I wish they would have been more prompt at disconnecting the machines and honoring our wishes to take him outdoors. I wish they would have told us we could take him home. I would like to have taken him home and given us more time to grieve with his body, to hold him and kiss him more.
February 2, 2017 | Unregistered CommenterEm
Thank you all for your input. I will let you know how it goes with creating this plan of care. I am so sorry we have to share in this together. Thankfully we have each other. And we can maybe make it a bit easier for future loss mom's.
February 3, 2017 | Unregistered CommenterStill0517
My experience was a little different in that my baby died right as he was delivered at 42 weeks. We had no warning (other than the warnings from the fetal monitor). A doula called Now I Lay Me Down to Sleep, and I am very grateful for those pictures. We had an outfit for Moses, since we thought he'd be coming home, and we did bathe him and dress him. We kept him with us in the room for two days and held him as much as we wanted. I wish that someone had put some kind of jewelry on him. A ring or something that I could then have worn to continue to keep him as close to my body as possible. I have a lot of wishes about the way I was treated. I was told my placenta was "ratty," and my OB never came to see me. When I did see her a week later, she said I wasn't validating her feelings. So I think there could be a lot of counseling for hospital staff, but maybe it's a little different when they are in CYA mode.
February 4, 2017 | Unregistered Commenterx
This is such a wonderful idea, and so necessary. Our son had been diagnosed with a fatal condition at 20 weeks, so my husband and I had a lot of time to prepare. We were able to get some wonderful support in place— from a bereavement doula to a infant loss therapist to a funeral home director. Without these wonderful people, we would have been completely lost. I went into labor early (36 weeks), had an easy delivery and we got five wonderful hours with our son before he passed away. Here are a few things I’m so glad we knew ahead of time, and also a few lessons we learned:


- You have rights! They are different in every state, but hospitals often follow rote protocols that you are allowed to refuse. Don’t let yourself be bullied.

- In California (and I believe in most states), you are allowed by law to take your baby home with you. The hospital we delivered at tried to take our son to the morgue and we had to fight tooth and nail to keep him with us and for the hospital to allow us to take him when we were discharged. Our funeral home director had to send a representative to the hospital in order for the hospital staff to relent. Had we not known this ahead of time, we would have believed the nurses that it was a requirement to hand our son over to them. I know it sounds weird to some people to want to take your baby home, and I’m sure it’s not right for everyone, but the extra time was so healing for us and it was absolutely worth fighting for. Things had been moving so fast up until that point, but when we got him home, we were finally able to just be with him. We took him to the funeral home ourselves the next day.

- Take photos! If you’re worried that they’ll be too upsetting, you don’t have to look at them right away, or ever. But our photos of our son are my most prized possessions now.

- Keepsakes are important. We weren’t focusing on it at the time, but I’m so grateful that our doula was. She swiped several things for us: The blanket that was first put on our son after he was born. The stethoscope my husband used to listen to his heart. The gown I was wearing when I delivered him. The towel we used to bathe him. It’s all important to me.

- Get hand and footprints! We brought some of our favorite childrens' books to the hospital and put our son’s footprints in them. We also brought extra paper for prints and now have his handprints framed.

- Keeping your baby cool is key to keeping him or her with you longer. Some hospitals offer things called Cuddle Cots, or you can request ice packs. (We had to fight the nursing staff to get ice packs for our son.)

- The postpartum nurses were afraid to take care of us after our son passed away. No one checked me before I left the hospital, no one talked me though postpartum care, no one told me how to keep my milk from coming in. I would have been lost without our doula.

- If you don’t want your milk to come in, buy Ace bandages and very tightly wrap your breasts as soon as you can after giving birth. Ice them in 10-15 minute increments multiple times a day, and don’t let them sit under hot water in the shower. If you do that for 3-5 days, you should be able to avoid having your milk come in.

- If you have time to prepare, get your birth plan in place and discuss it in detail with your doctor. If you want to take your baby home, I’d also discuss this with your doctor so any potential issue with the hospital can be dealt with beforehand.

- We had an informal backyard memorial for our son with our family members a couple days after we lost him. For people who want to talk about their child, it’s a great thing to do. It let our families know they shouldn’t be afraid to bring him up and that talking about him and sharing photos was healing for us.

- Strongly consider hiring a doula. Even if you can’t find someone experienced in cases of loss, having an extra support there will be a huge help and allow you and your partner to focus on your baby. Talk to your doula ahead of time about things you want to have happen, whether it’s taking photos or helping you remember to do things like get prints. I would recommend this even if you have family who can be there with you— the day will likely be emotional for them, too.

- Be unafraid to ask for things like space— this is not the time to be worried about being polite. You, your partner and your baby come first. There were several times that we asked everyone to clear the room to give us time with our son alone.
February 15, 2017 | Unregistered CommenterAllison
thank you all again for your thoughts towards this. Allison, thank you so much for your bulletins. And I am sorry for all of your losses.
February 20, 2017 | Unregistered Commenterstill0517