If you have found yourself in the same spot as we did, knowing I was carrying a child unlikely to survive to term, much less through delivery or to her first birthday, I am profoundly sorry. I only hope I can help in bringing you some measure of peace by suggesting ways to create memories with, and of, your precious little one.
As we worked our way towards meeting our little princess, Hailey Grace, creating memories to sustain us in our grief became SO important. Many of the ideas I will mention I 'found' on the Carrying To Term website I have noted in the "Important Links" section, others I came up with on my own (occasionally having an original idea) or heard about from my 'Trisomy friends'....
Before the Birth:
Purchases….
1. Footprint Kit - we have Hailey's hands and feet on what was moldable clay that hardens...I don't know the longevity, but it was very simple, no mixing, no mess. (We bought it at the Discovery Channel Store).
2. Mitzpah Coin…“The Lord watch between me and thee while we are absent from one another” on a coin split in two. Our little girl is buried with one half, we have the other.
3. Preemie Clothes – at least two outfits, the gown type ones seems to work well as they are more forgiving of not knowing the right size - I LOVE having the one Hailey wore in the hospital. I took pictures of the one in which she is buried.
4. Blanket, Stuffed Animals…we made Hailey a blanket and a stuffed bear and a stuffed duck – all of with which she was buried. We also bought Meg and Ben stuffed animals FROM Hailey – a bear and a duck (it’s a long sweet, story), which they snuggle all the time.
To Do….
1. Record Fetal Heartbeat - we just used regular audio recorder (and made several copies)
2. Request 3D Sonogram (I didn't even know these existed...an alternative would have been to videotape a 'regular' sonogram).
3.Take Pictures of everything that may be buried or cremated with your child.
4. ASK, ASK, ASK questions - anything and everything is fair game.
5. Create a Birth Plan...While I had written down a Birth Plan, ours ended up being more verbal as I had a scheduled c-section and we had requested comfort care only. Others I know say their Birth Plans were invaluable in making sure their wishes were understood and followed. trisomy18support.org has links to several examples.
6. Contact Hospice for help in explaining your baby’s condition to older children and for yourself – they are wonderful.
7. Think about Funeral Arrangements ahead of time, if you can bring yourself to do so. Hopefully they will not be needed for a long time. I changed my mind a few times about what I wanted done for Hailey and we had the time to make those changes to avoid future regret (if that’s possible). One of the things I wish I had been specific about was how they used the blanket we made for Hailey…it was covering her rather than her being swaddled in it…and I didn’t feel right disturbing her. She still has her blanket filled with love…
In the Delivery/Recovery Room(s):
1. PICTURES, PICTURES, PICTURES!!! and have them professionally developed if you are able (the pictures in the hospital of my first two were yellowish due to the lighting and drugstore processing – Hailey’s were beautiful, crisp and clean). We took both color and B&W, but someone has suggested that a digital camera can switch between color and B&W?, and developers can remove color…
2. Camcorder (extra batteries) on a tripod…I wish we had done this, we don’t have a lot of footage of Hailey and taking pictures and video taping at the same time was too much. I’m not sure the docs would have allowed the video camera/tripod in the OR – might get in the way if they needed to do something quickly – but I should have asked…there are no pictures/film of my husband baptizing Hailey and her squeezing his finger as he did so (a beautiful private moment between Daddy and his princess, I guess).
3. Think as you hold your baby about remembering what it feels like - to hold, to touch, to kiss – I cannot remember what Hailey felt like…(the only saving grace is Hailey had the same soft chunky cheeks as my son, so sometimes I close my eyes and give him sweet gentle kisses while he’s sleeping so I can feel Hailey again, sometimes he even lets me do it while he’s awake!).
4. Look at your baby's whole body, including opening his/her eyes (may sound invasive as it did to me at first, but I wish we knew what her eyes looked like – the only thing that makes me ok not having seen her eyes is knowing she had to have blue eyes like the rest of us, either dark like Dad and Ben or light like Meg and Mom).
5. Naked Pictures. Every baby has to have naked pictures!
When things settle down…:
1. If you are able, have a 'composite' video produced using your favorite footage, photos, music, heartbeat, etc.
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