Hospice…to be or not to be?

Last week the hospital referred us to “Forget me not” children’s Hospice and tonight we reluctantly (all) went for a visit. Ethan and Megan chose their own outfits and graced them with their presence –
Megs rocking a witches dress and crocs, Ethan – shorts, tshirt and wellies 
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We were pleasantly surprised and found it a very peaceful place. Everyone we met there were so nice, friendly and welcoming and the kids had fun playing whilst we chatted and took a tour. The facilities are absolutely fantastic and the things they do for families are second to none. The whole experience was emotional and at times I had to take a VERY deep breath to prevent the flood gates opening!!

They do care direct from hospital and also after death too (be it before, at or after birth).. I felt quite emotional as I stood in a nursery designed to lay to rest your baby until you are ready to send them to the funeral home/for burial etc. I stared at the crib and wondered if this is where I would want Poppy to be? I then turned and asked her what death was like for a baby and how it felt to be around them once they had passed. Here I am at 35 weeks pregnant, almost ready to birth my second daughter and there I am in a chilled nursery planning her passing – The whole visit was quite surreal and has left us with a lot to think about;

  • Is this where we want to go?
  • Do we want to go soon after birth? – if so their Dr/Nurse will come to the LGI and take her for us to all go together
  • Will we just access some of their services? A day visit.. an overnight visit etc
  • Do we want them to come to our home to provide support?
  • Do we want to stay with her there once she passes? As I said they have a “Snowflake suite” , a flat designed for families to stay and visit to view the infant or child/spend time with them after death. The nursery is kept cold for obvious reasons and hence its name. If she is still born this again is an option they have offered.

Its really so much to think about, they are wonderful and offer amazing services for families like us but we need a plan and are running out of time. I like the idea of going before with the kids and making memory boxes etc, I like that their facilities make the most of the time you have as a family with your child. Everything else is so foreign I dont know how I feel and we dont know what we want to do. Its a situation in life where you literally have zero experience to draw from and are making decisions on a situation you have no idea the outcome.
One thing that troubles me the most is that this path means comfort care! What troubles me more is that it soon became apparent that the hospitals referral means that they can refer our care to someone else ASAP and that its therefore unlikely that Poppy will get the healthcare we have been seeking… If we want her home / hospice route we sacrifice the fight for feeding/breathing assistance and just have to hope for the best. If we stay in hospital, who even knows now if they will give her these things. Everyone seems to like the phrase “prolonging the inevitable”… we see it as “written off”!!!

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3 Comments

  1. August 13, 2014 / 9:24 pm

    Oh dear Mary & Nathan. I shake my head. I’d bring her HOME with support but i would want to be in control. It breaks my heart for you SORRY. She’s lived with you from the second you concieved her. DON’T LET ANYONE ON THIS EARTH TAKE HER AWAY FROM YOU. unless you agree. SORRY I Love you Mary so much. <3 XXX O:) 🙂

  2. Helen
    August 14, 2014 / 4:03 pm

    Mary, I’m so sorry to hear about your precious baby. I’ve never been through it, so I have no idea what I’d do about going to a hospice, or going home. I’ve had a few friends have to deal with a similar situation, not the same challenges exactly, but they didn’t get to bring their babies home for good. Someone may well have said to take photos and that’s all I’d say. lots of photos, even though you’ll probably be feeling the worst ever. Poppy is loved and valued, just like all babies should be. I’ve been told that the photos can really help, especially later on. Our thoughts and prayers are with you and your beautiful family.

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