BLMs and those who have had critically ill children in the hospital:
I need your suggestions!
We are starting the process of getting memory boxes together for Children's Hospital and comfort kits for families in the PICU. We have come up with several good ideas but are still looking for some more.
Memory Boxes: What gave you the most comfort? What would you have liked to have? Did you do anything unique to preserve your child's memory? If you received grief information- what did you get? Was it helpful or a waste? Anything you didn't like?
Comfort kits for the PICU: these will be for families who have a critically ill child that was emergently admitted to the ICU. We want to provide things to make their stay more comfortable and tolerable. These will be things for the families that had no time to prepare for a hospital stay and whose child is to sick to leave. What would you like in the hospital? Anything you wish you had to make time go fast or just make you more physically comfortable??
Thank you!!
Mama and her Angel
our last picture together
In Ellie's Memory...
- Tiffany
- A wife and mommy trying to make sense of my infertility issues, son's autism and the sudden death of our beautiful 9 month old. Just trying to make my way down this broken road.
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9 comments:
Thanks!!! I am so ready for the little one to get better. The crying is about to make me go crazy at times. I can't think straight lol, cook, clean, etc until my husband got home. I had to wait for him so he could help me. He had to hold him while I tried to clean and cook. I hope you had a great day today. Praying for you!!!
I am not a BML but my volunteer work does put me in touch with families in medical crisis. One thing I hear that is oft over looked is real Kleenex or Puffs. Most hospitals have the cheap,commercial grade sand paper tissue. NOT what you need when you are shedding many a tear.
What a wonderful idea... just some ideas off the top of my head and ideas I've heard from others blogs - instant camera or details of a photographer who takes photos in these circumstances, little bag for a lock of their hair, details of counselling support services, info/brochure of service that might deliver pre-prepared food.. plenty of information about how NICU works and orientation to the place... teddy/toy. I was given a lot of brochures re bereavement counselling and stillbirth support services which I found useful after I left the hospital but not relevant for your purposes. If their child passes away then the direct contact details of a funeral service (ideally with an infant specialist) that can guide them through the service/burial process - we would not have known where to start. Will let you know if I think of any other ideas xoxo
A journal and pen. Sometimes you just need to pour your heart out.
My memory box was/is so dear to me.
1. There was a home made blanket that they wrapped Eden in when they first brought her to me. (I was going to have it buried with her, but I kept it because it had her smell)
2. The outfit we buried her in was also handmade. My baby looked like an angel, dressed in white. God bless the person who made that dress.
3. There were poems and notes from the ladies who were in charge of making the memory boxes and putting things in them. The poems and letters were so heart felt, and when I was ready I read them.
4. Of course our from the hospital are priceless. They took some as well as a family friend.
Tiffany, here is a link to my own memory box project, hopefully it will give you a few ideas: http://wingsofaddie.blogspot.com/p/memory-boxes.html
Good luck with yours! I will say that for families with children in the PICU or NICU, journals and writing utensils are priceless!
I received a memory box of my son, and it contained a small knitted blanket that they had wrapped him in. The hospital had also put in his arm bands and measuring tape they used. I wish they would have given me the baby blanket that they first wrapped him up in and the one I held him in. Also, this is not something you can put in a box, but info needs to be out there about encouraging parents to take pictures. It never crossed our minds--we were in a state of shock. We could have taken photos of him even with our cell phones! The hospital did give me a lovely basket containing several things. Pamphlets on stillbirth, grief etc. I really did not read them until weeks later. Online was much more helpful--so maybe info on online sites is needed. The basket had a children's book about babies/dying/Heaven. Helpful for really little ones, my older kids did not like it. It also contained a journal and pen, tea cup and herbal teas, pretty shower gel, and an angel pin. Tea cup was and still is my favorite.
also, like New Year Mum said-good info on exactly where to go for funeral/cemetary services. We had brochures from a couple different local places that specialized in pre born babies/infants. With out that info we would have been lost.
My children were never in the PICU, but two times I had infants who were emergently admitted (one at 6 weeks due to kidney infection which lasted in a weekend stay and one at 4 weeks with severe RSV which lasted for a week long stay). With both I can remember just being so cold especially at night. Warm, heavy blankets and warm socks would be good. Also, I remember how much I needed chapstick and good water to drink--I think from the dry air. Both my babies were small and had stopped their nursing schedule because of being so sick. I was so engorged. Maybe a breast pump--even just a hand held one--could be available for nursing moms who experience a disruption to nursing. Also, it may make them feel like they are doing something useful by pumping milk for later use when baby can take it.
I can't think of anything that would make the time go by faster when you are there. Newspaper and magazine articles seem so trivial when you are there.
Hope it helps
Some really, really good ideas ladies! Thank you!
Tiffany,
One of my daughter's best friends (age 4) was urgently admitted to PICU yesterday and has an aggressive cancer. A tumor was removed from his abdomen during a 5 hour surgery and he was diagnosed with B Cell lymphoma. The doctors say its treatable, but the treatment is horrific (chemo, radiation, tons of yucky meds,etc). We are devastated and in shock. I am writing here because I remembered this post, and wanted ideas of things I could bring to his family. He is starting 8 days of intense treatment today. If there are any more ideas that you have that are not posted here, please feel free to email me or post again here and I will check it.
My nurse friend suggested a good blanket also, good snacks, and good instant coffee like Starbucks Via. I also thought maybe some art supplies/workbooks for him to pass the time? Maybe a DVD or a small toy?? Also, if you have advice for me on how/when to drop it off. Do I need to call first, or can I just take it to the nurses station and leave a note? As a parent, would you like to know I was there dropping it off or not? My kids have a yucky cough, so I know they cannot come. I feel fine, but am still worried about any kind of germs being passed to the parents. Sorry for rambling, but this is such a nightmare for all of us. I've read from so many posters online that the worst thing to do is just "tell me if you need anything" because they cannot really ask for help as it is all so overwhelming. So I don't want to just sit back and wait to be enlisted, but I also don't want to bug anyone either. Any advice would be so appreciated. And please also think of sweet Hudson Kadlecek today, and his family who is hurting so deeply.
XOXO
Beth
mbethwilliamsATgmailDOTcom
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