String of Pearls - This foundation, established in memory of the family's baby daughter, Pearl, provides a multitude of resources, including a kit of keepsake-making supplies and other essential items (a book called "A Gift of Time" which I HIGHLY recommend, herbal tea, a hand-knit baby blanket, cream for breast engorgement, etc). A sample birth plan can also be found here, which I found very helpful in spurring our conversations and considerations regarding what type of care we would want for her if she was born alive, and how we wanted things handled if she was not. The staff found it very helpful as well.
Perinatal Hospice - PLEASE consider looking up a perinatal hospice program in your area, if you haven't already been connected with one. Hospice is a mentality and a care model more so than a physical building, focused on providing quality of life for those with a terminal diagnosis (even unborn babies, in the case of perinatal hospice). They can help you draw up a birth/comfort care plan for your baby, hook you up with grief counseling, suggest books and other helpful resources, connect you with funeral homes that they have worked with and found to be accommodating to these situations, etc.
Still Birthday - A HUGE cache of resources that I wish I had found sooner!
The Isaac Delisle Foundation - Another plethora of resources, established by a family who has become near and dear to my heart, who lost their baby son Isaac.
Isaiah's Promise - Support for families carrying to term after a severe or fatal diagnosis.
Be Not Afraid - a private non-profit whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term.
Sustaining Grace - Helps to provide 3D-4D ultrasounds for families in need who have received a terminal diagnosis.
Keepsake Items
A Heart to Hold - Providing weighted heart-shaped pillows for grieving parents to hold, customized to the birth weight of your baby.Carrie Bears - For $50, you can send in a blanket or clothing item and have it stitched into a soft, huggable, 20-inch custom stuffed bear.
Molly Bears - A weighted bear customized to your child's birth weight, free of charge. However there is a very long waiting list (12-16 months). They open for orders once per month (on the last day of the month) with a limited number of openings.
Decorative Clay Works - A handmade terracotta tile fired with the image of your baby's sonogram (or other) photo.
GetAQuote - There are a zillion Etsy shops that make handstamped silver jewelry, but this is the particular shop that I worked with to create a necklace for my baby girl. Her prices are affordable, the work is beautiful, and she was so kind and sensitive to me in my time of need. I highly recommend her!
Keepsake Suggestions to Consider
As you plan for the birth of your baby, I'd like to offer up a few suggestions for keepsakes that you may want to consider creating. In my experience, one of the greatest blessings of having our diagnosis ahead of time was being able to prepare - we came to the hospital prepared to make as many memories as we could with our girl in the time we were given, and were able to leave with many keepsakes and no regrets.3D-4D Ultrasound - Google 3D ultrasound businesses in your area. It isn't exactly cheap (if you need help, visit sustaininggrace.org), but having a DVD of our daughter still alive and moving, a stuffed animal that plays a recording of her heartbeat, and multiple beautiful 3D sonogram photos of her is truly PRICELESS.
Maternity Photo Session - NILMDTS may do one for you free of charge, or you can spring for a paid professional photographer, or you can get a camera-savvy family member or friend to go to a pretty setting with you one day and take a few shots. You may feel too sad right now, but believe me - your raw emotions make for beautiful images that you will treasure. You're capturing the experience you had of your baby's life. It's real, and it's priceless. Just like the NILMDTS photos, you may find these photos painful to look at, but you'll never be forced to look at them if you don't want to. Capture them now, while you can, so that you won't regret not having them later.
Handprints and Footprints - Take your time and get some really good ones, even if it's just on a piece of paper. The hospital will have the ink (since they do these prints regularly anyway). You may find that you want a really good template for a tattoo (or any number of things) later on.
Clay impressions - My single most treasured keepsake of Gracie is her hand- and footprint impressions. You can buy some Crayola Airdry clay at Walmart to bring with you to the hospital, or buy a more formal "kit", or request a kit from String of Pearls. The key is preparing ahead of time and bringing this stuff to the hospital (or having someone run out and get it for you - family members and friends are ALWAYS desperate for a way to help when something like this occurs, so don't hesitate to USE THEM)!
Special Blankets/Hats - We bought two blankets, one to wrap her in after she was born and leave on throughout our time with her (that we would keep) and one for her to be buried in, that we wrapped around her before releasing her to the funeral director who came to pick her up. I'm SO glad we thought ahead and had something special for her - we even had my mother-in-law crochet her name onto it in advance (the one we kept), so it was pretty for pictures too. We also had a dear friend of ours crochet two tiny hats for her - one for her to wear while we were with her (which we kept), and an identical one for her to be buried in. Since it was custom-made she could make it extra tiny for us (based on our 19-week ultrasound head measurements), which was exactly what we needed since you otherwise can't find such a tiny hat in any store. She was going to keep making slightly larger and larger ones every couple of weeks as the pregnancy progressed, so that when the time came (whenever that might be, and whatever size she might be), we'd have a perfect hat for her. The first ones she made ended up being perfect, though!
Hang on to the hospital baby blanket! - This is one thing I neglected to do that I wish I had done. I would have used it to have a Carrie Bear made. In those first days and weeks after losing Gracie, I really would have loved to have that blanket to cuddle and sleep with. Hang on to everything from the hospital, for that matter.
Lock of Hair - If your baby has enough, keep some. I'm sure your nurse can find you an envelope to put it in if you forget one. My lil nugget was bald, but I would have definitely kept some had I had the option :)
Pre-Plan - I know that you want to avoid funeral planning like the plague, but it will be a tremendous blessing not to have to worry about any of that when the time comes. Trust me. It will also give you something to DO for your baby, which I found cathartic. It not only kept my mind busy, but made me feel like I was expressing my love to her in one of the few ways that I would be able to while she was with me. Try to think of it as your only opportunity to plan a celebration of your baby's life - seize it, and make the most of it :) Also, DON'T BE AFRAID TO ASK FOR REDUCED RATES. Many funeral homes will keep the costs minimal for you when you tell them that this is going to be a stillbirth/infant loss situation. Ask around to multiple funeral homes. I sent 5 or 6 e-mails to different funeral homes explaining the situation and what we wanted, and outright asked if they reduced their rates in situations like this (and what the cost would be). The "asking around" is also a task that you can delegate to a friend/family member who has offered to help, if you feel you're not emotionally ready to talk to funeral homes.
Book Recommendations
A Gift of Time - Continuing Your Pregnancy When Your Baby's Life is Expected to Be Brief - An excellent resource for both information and support, full of quotes from families just like yours. You will find that you are not alone in the vast array of emotions (both the beautiful and the ugly) that you are experiencing. The book also makes many helpful suggestions regarding ways to remember and memorialize your child, making logistical preparations, and working through the many stages of your grief.God Gave Us Heaven - A lovely (and short) story to help explain your loss to your baby's siblings. With tender words, Papa Bear describes to Little Cub a wonderful place, free of sadness and tears, where God warmly welcomes our loved ones after their life on earth is over.
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