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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 > Suggestions for those few minutes with baby

Our granddaughter will be born in a few days. Miraculously, despite expectations, she has lived to be full term. We do not expect to have long with her because of her heart and lung problems, so I am asking for advice to be certain we do not have regrets about precious memories we may overlook. What were the most beautiful moments with your babies? What should we make certain we do as we say hello and goodbye? My heart is heavy and my tears seem non stop but we are grateful her family has been able to love her for these past 40 weeks. She will enter this world and leave it knowing she is deeply loved. Forever. Our precious little miracle.
March 7, 2017 | Unregistered CommenterC
C, Thinking of you and your family as you say hello and goodbye. Right off the top of my head, two things stand out to me that you may want. Lots of skin to skin contact and photos/video. The photos are heartbreaking, but they are also a link to reality. She really was here, she really is loved. I don't know if your area has any photographers from the organization, "Now I Lay Me Down To Sleep," but I have read they do wonderful work and they are not intrusive. Link: https://www.nowilaymedowntosleep.org/
March 7, 2017 | Unregistered CommenterJill A.
I second Jill A's comment. The hospital arranged for a photographer from Now I Lay Me Down To Sleep (a volunteer, free service) to come and photograph our family following our daughter's passing and they are absolutely treasured photos. It took me awhile to be able to look at them but now I look at them every day and am beyond thankful we have them. Also, video if you can. We just used a cell phone to video our daughter because her premature birth was sudden and out of the blue so we didn't have the ability to prepare to bring along a better device but if you have access to an actual camcorder or camera with a video function, that may be something you can plan to bring along. If your family is religious, perhaps think about asking a priest or pastor to baptize your granddaughter or have her christened. Encourage your family to read to her, sing to her, rock her, hold her, listen to music together, do as much as you can with her in the time you have, even after she passes. Because our daughter was in the NICU locally and then transferred emergently to a higher level NICU in another city, I was never able to hold her when she was living but we were able to spend just shy of 24 hrs with our Evelyn after her passing and we took full advantage of every moment. Your family is my thoughts and heart -- sending you all comfort, peace, strength, and love <3
March 7, 2017 | Unregistered CommenterMelissa
Those moments that she will be with you are going to be so precious. the now you lay me down to sleep, was a great service,

however they will be coming after she has passed. I would hire a private photographer who could be there and take photos of that precious baby girl that will be coming into your world then. Those pictures of your moments with her, your meeting her, the skin to skin with mom and dad while she is with you will be precious to have. there are many birth photographers out there, they dont have to be there when she is born but they can be there waiting to come in once she has been delivered to capture those moments for you.

My heart breaks for you and your family. that little girl has only known love. sing, talk to her, cuddle and rock her. sending you lots of love
March 7, 2017 | Unregistered Commenterstill0517
C, I'm so sorry that your family is going through this.

The main thing to know is that it's not over once your granddaughter passes away. Nowadays it's customary to encourage parents to spend time with their baby's body, and to interact with it for a while (sometimes a few days) in order to make memories. If the parents have just a few minutes, they will probably want to hold their baby, and I agree with everyone else about making photos. But once she passes away, they will still be able to bathe her, dress her, hold her, take a lock of her hair, make hand and footprints. If any of this seems weird to you, please know that it's a completely normal impulse.

It's also most probably all right to buy things for the baby. I treasure the few things we bought for my Nadia (she was my second child, so we didn't get much). Still, always ask the parents whether they want a certain type of involvement or not. Sometimes family offers to clear the child's room of baby stuff, but most of us would feel completely outraged at that (even though I understand why it might seem like a good idea). Just keep asking. They are lucky to have you with them on this journey.
March 7, 2017 | Unregistered CommenterAna
Dear C, I'm so sorry that you and your family are going through this, that you have to make these plans for your granddaughter. My heart goes out to you. There have already been many great suggestions. You are packing so much into a short period of time. Getting high quality photos and videos is so important. Even if the parents don't feel up to looking at them for a long time, they may eventually, and I don't think you can have too many. I'm almost five years out from my daughte's death and I wish we had more photos. I also wish we'd hired a photographer instead of trying to take them ourselves. It's hard to capture the best images yourself because of all you're going through. Having videos is also a wonderful idea.

The parents should think through who they want present and who will meet the baby. This can be hard, particularly if there are siblings. It can be hard to know what to do and there is no right answer. Every family will decide differently.

The suggestions for what to do after the baby passes are all very good. Spending time with the baby, all the time they want, is really important. There will never be enough time, so making sure they are not rushed is critical. As one other person mentioned, some families are even opting to take their babies home after they pass. This may sound strange, but it is becoming a more common practice. There is a very good article about this in psychology today:

https://www.psychologytoday.com/blog/laugh-cry-live/201403/providing-after-death-care-home-when-baby-dies

At the end of the article there are some perspectives from parents who have taken their babies home. The article also mentions cuddle cots and other methods that help extend the time at home.A funeral home can help as well.

Hopefully your son/daughter is working with a perinatal hospice team at the hospital to prepare for the birth. They can tell you what services they provide and then you can see if there are other things you want to prepare for. It's likely that they will make hand and foot prints with ink, but you may want to bring a kit to make plaster casts as well. You'll want to have special clothes and blankets, some to bury or cremate with the baby, some to keep.

There are no right or wrong answers. It is so hard to know what they will want to have as memories. From my own experience, I am more unhappy about things I did not do than anything we did. I would only choose to do more if we had it to do over again. I am thinking of you, your family, your granddaughter. I wish you all courage, strength, and grace for the times ahead. Please come back here for support and please suggest Glow to the parents when they are looking for resources. Love to all of you.
March 7, 2017 | Unregistered CommenterAurelia
Thank you all for your compassionate suggestions gleaned from your own heartbreaking experiences. She will be born tomorrow and naturally I cannot sleep. Too many thoughts running through my mind. Christening and burial gowns, 2 pair tiny beaded socks, 2 crocheted blankets with mom and dad ready to take to the hospital, along with other things. New coloring books and crayons and colored pencils and games and treats and stuffed animals for brothers and sisters as we wait to meet her. Photographer and videographer on call. Check lists in my head. Sorrow in my heart. Tears on my face. Thank you all for your prayers.
March 8, 2017 | Unregistered CommenterC
Dear C, I'll be thinking of you and your family tomorrow. Holding you in my heart in love and prayer. Have a joyous day, full of love and tears and gain and loss and excitement and surprises, laughter and heartbreak. May this little girl be passed from love to love to love. Peace, Jill A.
March 8, 2017 | Unregistered CommenterJill A.
C, I am thinking of your family today and sending comfort and love your way. You are not alone.
March 9, 2017 | Unregistered CommenterMelissa
C, I am holding you and your family in my heart today and asking God to hold you all so tightly. Like Melissa said, you're not alone.

With love.
March 9, 2017 | Unregistered CommenterLeah
C Thinking of you and your family and that precious baby girl this weekend and tonight. Hugs and love to you all
March 12, 2017 | Unregistered CommenterStill0517
Thank you all. It has been a difficult few days (5 months) but we have been strengthened through the kindness and prayers of so many. We were surprised that instead of being less than 4 lbs she tipped the scale at 5 1/2 lbs! Beautiful baby with lots of dark hair who lived just long enough to hear her mommy and daddy tell her how much they loved her and what a blessing it is for them to be her parents. I am in awe of their courage and raw emotion. Lots of tears today as we held her service - they asked all four grandparents to speak which was incredibly difficult but helped me to put into words some of my feelings. Baby Alyssa has been a gift for all of us as we have seen so many acts of kindness from so many people. May God bless all of you with the comfort and support we have received. We know lots of dark days and nights are still to come but trust that we will survive with the grace all of you have shown. Thank you again for your kindness and compassion.
March 13, 2017 | Unregistered CommenterC
C, Thank you thinking to give us an update. For taking the time and thought to let us know what happened. I am so sorry she died. I know you expected it and did not plan for anything else, but it is always a shock anyway. I'm glad her parents and family got to love her, though. Peace to you all.
March 14, 2017 | Unregistered CommenterJill A.
C, I've been thinking about you all these days and I also want to say thank you for taking the time to get back to us. You are always welcome on Glow, in all the dark days ahead (and the lighter ones as well).
March 14, 2017 | Unregistered CommenterAna
Just reading this now. What a wonderful Grandmother and mother you are. I am glad you were able to spend a peaceful moment with your sweet granddaughter.
March 16, 2017 | Unregistered CommenterH