I haven't posted in a while, but Piper is deteriorating very quickly. We were in the hospital about 2 weeks ago because she started having infantile spasms, a type of seizure, and we were back at the hospital last week because she was having trouble breathing. Last night she had 8 episodes where she stopped breathing completely for about 10 seconds. We still have her angel care monitor on her bed and it went off several times during the night, and each time, she wasn't breathing. She started breathing on her own, but I really thought we were going to loose her last night. Even though she is still here, I know she won't be for much longer. Her Dr said it sounds like her disease has progressed into her breathing center and there is nothing that can be done. I'm sure many of you are wondering why we haven't rushed her to the ER. Well, we have decided that we will not allow her to be put on a ventilator, respirator, or be trached because there is no reason to. She is not going to get better. We want her to die in peace, at home, without IV's and tubes stuck in her. That being said, we know we have to make very difficult decisions very soon. We don't know what to do in regards to a funeral. We don't go to church, and we never have so having a funeral in a church just doesn't seem right to us. Even having friends over to our house for a small memorial seems a little wierd to us. None of them knew Piper very well due to the fact we had to keep her and her sisters pretty secluded because of RSV season. My husband also wants to creamate her instead of bury her. He thinks it isn't healthy to have a grave to go visit where it is inevitable that we would just sit and cry. He wants to spread her ashes somewhere and just remember the good times with her. So, I have several questions. I am trying to come up with what to do for a memorial service, and I am just at a loss. I don't have a single idea. If it wasn't for my baby, I would probably have plenty of ideas. I just can't believe that I'm having to make these decisions. I would love to hear any ideas of good ways we could honor Piper. Also, do any of you have experience with creamation? We have no ideas of where to spread her ashes. My husband mentioned spreading them in our backyard since this is the only home she ever had, but we are moving next week and I just can't bear to spread them somewhere that I can't ever go see. It's not like she has a favorite place or anything. I just don't know what to do. I apologize if these are inappropriate questions, but I didn't know where else to turn.

Mom to GGG triplets born 2/7/09 at 30wks, 1 day

Andi Elizabeth - 2 lbs, 9oz
Bella Ryan - 1 lb, 11 oz
Piper Kate - 3 lbs, 4oz - Diagnosed with Leighs Syndrome 01/2010. Passed away on 01/16/2011.

Belinda,

None of these are inappropriate questions, except for the fact that you have to even ask them. I am sorry that you have had to join this awful, awful forum on TC!

Are you involved with hospice? They can be there at home so that Piper can die there, and when the time comes help you handle things, such as moving her body and such. There are differences in what has to be done if a person dies at home, I think, and hospice probably knows what to do.

We didn't have a funeral. My husband is Jewish, I'm Catholic, which was part of it. Caitlin was stillborn, and for the life of me, I honestly couldn't think of what would be said. "God bless Caitlin, she liked to kick the crap out of my vagina when I was pregnant and it felt like being poked with knives." Didn't seem appropriate, and I think only I would have thought it was funny! Plus we had to move to a different town for the duration of my pregnancy, so we had no friends in town, and we live in Alaska, so no family. And ultimately it just wasn't something we wanted. There's nothing that says you have to have a church funeral. The funeral home can host the viewing (if you have one) and service, and you can either find a non-denominational person to handle it, or just arrange for people to speak. Or do nothing. There are no rules. Friends and family will likely come, even though they didn't "know" Piper, to offer support to you and your husband.

We did cremate Caitlin, and the funeral home took care of that. It's ultimately up to you and your husband. We originally planned to spread her ashes when we returned back home, since Anchorage was our temporary home and we didn't want her in a place where we weren't. But, the minute the woman at the funeral home gave me her urn, I changed my mind. The ashes are all I have of her - I have no photos that I can display, no living memories of her - and so I couldn't part with her. If she'd lived, even for a few minutes, and we'd been able to take photos to have something tangible, I may have felt differently. But that was our thoughts on it. There's nothing that says if you do choose cremation that you need to spread her ashes right away. Maybe when her siblings get older they can help choose a place, something that means something to them? Or maybe one day you will find the perfect spot.

There's no right or wrong in any of this, just what feels right to you and your husband. So just make sure that you really, really discuss with him (and him with you) what you're feeling, and what you want, especially with the spreading of her ashes, since once that's done, it can't be undone.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30 weeks, 2 days

We're Marching for Babies!

http://www.marchforbabies.org/asmaio

Your questions are completely appropriate; most of us have asked them before and understand.

First, for the memorial service, there are no rules, so do whatever is best for you. I really appreciated the way our pastor handled Spencer's - he came over one night with a notepad and just said, "Tell me about Spencer." He took notes and the whole service was just him talking about "small but mighty" Spencer, telling funny stories and all the little things that he did that were so particular to him. He basically just affirmed his life, even though he was only here for 21 days. It was nice for people to hear about how special he was, how unique, and a good way to honor him. We had some friends sing - they chose "Glory Baby" by Watermark and some other songs I don't remember. No one from my family spoke, we just left it at that.
My mom and sister went to the funeral parlor early that morning and set up the "stage" with pictures of Spencer with and without his siblings, blown up big and in cute frames. They hung up his blankets, some clothing and hats, and set out all the flowers that had been donated.

Having said all that, it was the most horrific, heartwrenching day, second only to the day he died. No mother should have to sit through her baby's memorial service.

We had Spencer creamated. I couldn't bear the thought of him being alone in a cemetary. He had never been alone since conception; I needed to have him near us somehow. I was such a wreck that I swung back and forth between wanting to bury his ashes somewhere personal, scattering them, keeping them, etc. Finally someone told me to hang onto them until I was in a better frame of mind and could make the right decision for me. I appreciated that advice. They're still sitting in a little box I found that is simple and just says, "Loving you forever" on it. It's not an urn - I hated the child urns and spent months searching for just the right thing. I have them high on a shelf in the kids' room - somehow it makes me feel better to know he's with his siblings where he belongs. I may change my mind later, but for now I feel calmer having them there.

Please don't be afraid to ask these questions. So many difficult, confusing things come up when a baby dies and there's no "handbook" to tell you what to do. Unfortunately, we've all been through it and can share our experiences to hopefully help you a little bit.

PS - I think it's so kind of you to let Piper stay at home during this time where she belongs and is happiest.

Belinda,

Your questions are why this forum was created. This is a club to which no one should belong - but it is good to have a place where you do not have to explain yourself.

I am Catholic, my son was cremated. We did have him buried in our Catholic cemetary in an area reserved for children. I do not visit him often or cry by his grave but it gives me comfort to know where his remains are. A friend of mine had a child die at 13mos old. They chose to scatter his ashes - that worked for them.

Our "service" consisted of me, my dh, my mom, and our daughter. My other two boys were asleep in the car. I wanted it private - it was very sad but very therapeutic, truly. It was just at the gravesite.

I understand your dh's feelings but, in the long run, would you want a place in which you could take your girls to "remember" their sister. This will always be a wound in you and in your heart. The death of a child isn't something anyone "gets over" it's something you get through.

As a pp mentioned, you may want to consider a service at a funeral home - or you can look into a local cemetary and inquire about a children's section. Not to be crass, but if you choose to cremate, it will allow you more time to make a long term decision.

I am so sorry that you and your family are having to deal with this and I admire you so much in your effort to respect the end of Piper's life by allowing her to be at home, with her family. My heart is with you.

Marie

Belinda,

Could part of your husband's desire to not have Piper buried be that he is one of those people who do not visit graves, and it would make him feel bad to know where she was, yet never visit? If that's the case, then maybe letting him know that *knowing* where she is, and having a place to visit her if you desire, is important to you, but that you would not judge or think less of him if he chose not to visit the grave.

But like Marie said, cremation allows you more time to make a decision as to what to do with Piper's remains.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30 weeks, 2 days

We're Marching for Babies!

http://www.marchforbabies.org/asmaio

Thank you for all of the advice. I know that we will decide on cremation for 2 reasons. My DH prefers it, and the more and more I think about it I don't like the idea of her in a cemetary all by herself, as pp mentioned. That just seems so sad to me. I love the idea of keeping her ashes and having her sisters help spread them one day. I also love the idea of keeping her ashes in a special spot in the girls nursery, so in a way she will always be with her sisters. I still have no idea what we will do for a memorial service. My husband has such a great attitude about people passing away and thinks their lives should always be celebrated with a party instead of a sad memorial service. I know he will feel the same about Piper and I'm starting to think that may be the best way. I don't think I will be able to sit through a typical memorial service for her. It's will just be too hard.

Mom to GGG triplets born 2/7/09 at 30wks, 1 day

Andi Elizabeth - 2 lbs, 9oz
Bella Ryan - 1 lb, 11 oz
Piper Kate - 3 lbs, 4oz - Diagnosed with Leighs Syndrome 01/2010. Passed away on 01/16/2011.

Belinda,

I think about you often, wondering how things are going for you, so I'm glad you posted. I'm sorry that Piper had such a rough night. I can't even imagine how stressful it was for you.

We did not do a funeral either. We had Alex baptized quickly, and that felt like enough of a send-off at the time. The truth is, I just haven't been able to face it. Someday, if it feels like something we want/need to do we'll do a service then. I have often thought about waiting until my survivors are older. I really have no idea what we'll ever end up doing, but for now I have been comfortable doing nothing.

We had Alex cremated. I didn't want to take a chance that we would bury Alex and then end up moving far away. Right now Alex's ashes are still in the box from the funeral home (that sounds bad, I know) but I was hoping to find a really cool artsy urn and haven't found one I love yet. Also we may spread some ashes, I have no idea where, or give some to my other kids.

I think you can do pretty much whatever you want and are comfortable with for honoring Piper. I have been to several funerals where I barely knew the person who died - I just went to support my friends, so I don't think it's weird if people didn't know Piper. Maybe someone here who actually did a service can share what they did. The only things I could think of were to include books or songs you read/sing to the girls.

I'm sorry you are having to go through this...

Allison

Mom to:
Madeline 09/2001
Jack, Evan & ^Alex^ 03/02/2008 @ 26 weeks

Belinda,

I am so sorry for what your family is going through. Knowing what will happen does not make it any easier, except that you have the opportunity to ask these questions.

It sounds to me like you have made the decision to cremate Piper's body. In retrospect, I wish I had thought to do the same, but it really wasn't brought up. I don't know if we would have done so, but I wish it was something that we considered.

We were faced with choosing a cemetary. Not knowing if we are cemetary visitors complicated this decision. We just didn't have any losses in the recent past and none geographically close. Should we choose the one far enough away and not near anything we do? Or should we choose the one that we would drive by at least weekly? Would we be saddened and reminded of our baby's death every time we drive by it? What if we ARE cemetary visitors and getting there is too time consuming and difficult?

We opted for the cemetary in town, on the main road that we drive by very often. We don't visit often, but I like that I can. I do feel guilty for not visiting "like I should". But all in all, it was the right decision.

But, if we had an opportunity to relocate, I'm not sure that I'm ready to do so. It will be 9 years on April 25, and I can't fathom leaving my baby behind. If I did move, I would ask friends to stop by now and then to clean the stone and tidy up, but it wouldn't be the same.

If you do choose to cremate, you can take your time deciding what to do with Piper's ashes. You can bury them in a cemetary or keep them on your dresser. You could check with your local government to see if you can bury them in a tribute garden at your new home. I know some have a piece of jewelry that seal some ashes inside a glass bauble that you can wear as a necklace and always keep her with you. I agree that your current backyard just doesn't seem right. My point is that you don't have to decide that part of it right away.

As far as a memorial service, you should contact the funeral home and they can discuss your options. If you are not believers in god/heaven they can tailor a service for you and hold it at the funeral home. We were not "church-goers", but when we lost our son, I wanted to have his service in a church with a minister. We were/are believers, but at the time we weren't "practicing" (if that makes sense). The funeral home made all the arrangements and found us a church near our home that was available.

Almost NOBODY that came to Danny's service had seen him. He spent 5 months in the hospital and was home for 2 months. It was late winter and early spring so we didn't even get out in the neighborhood because of weather. I remember one neighbor who didn't even know I had been pregnant, let alone having twins. He met Danny 2 days before his passing when I went for our first walk. This man was DEEPLY saddened when he heard the news and was at the service. I didn't really even know him or his wife. I mention this because you might still consider some kind of a service or gathering. It could just be a balloon release at a park that you hoped to take her. People will want to come to support you and your family. They say the funeral is for the living. It might bring you more comfort than you think.

I also wanted see if you have been in touch with eLIMBO and PSM- both are Yahoo groups for families that have lost multiples. You will get a lot of support and ideas from many that have also experienced a loss.

MonsterMom6
10 year old ^b^ b twins @ 30w5d (1 survivor) and
8 year old gggg quads @ 32w0d

Belinda,

I am so sorry that you are having to go through this. I don't know if it will help but I will share what we did when we were faced with our own baby son's terminal illness. After his leukemia relapsed and the doctors' told us there was nothing else they could do, we cared for him at home until he passed away. We did not have hospice but we did have a home health care nurse come periodically and administer any necessary medications and help with any concerns. We also worked with a local funeral home that was very helpful in planning what to do after he passed away at home.

One of the things that helped the most for me was seeing a family therapist during this time. I started going to see the therapist after I found out my son was terminal and continued to see her until a year after he passed away.

My son passed away peacefully at home surrounded by his parents and grandparents. We had a wake at the funeral home which gave us the opportunity to see many co-workers, friends, and family we had not seen since his year-long illness. We did not belong to a church at the time, but we were able to have the funeral at my SIL's church and also a small grave-side service.

We buried our son in the "baby section" of a local cemetery where we lived at the time. We visited the grave site many times the first year after he passed away and then less after time passed. I still have family in the area that are able to visit his grave site periodically.

I have no regrets today regarding our decisions at the time. I feel blessed that I was able to have him for 18 months. I am hopefully a better person and parent because of him.

I will be thinking of you during this difficult time..

Nettie
mom to ggg age 10
big sister age 14
^big brother^ 5/30/93 - 12/7/94

I just wanted to add that I also saved a lock of my son's hair and a box of his outfits that were my favorites. Even though we have had to move twice since he passed away, the box always comes with us. I periodically wash his clothes and put them away back in the box. I guess it is my way to still stay connected to him. Even after all this time...

Take care,
Nettie

I am glad that you were comfortable posting your questions here. Unfortunately we all have had to struggle with these questions as well.

I remember when after Hadley passed away I felt so much pressure to make all of the decisions and arrangements right away and ultimately the best thing that we did was wait. We did decide to have her cremated and still have her remains at home with us. My husband had wanted to scatter them somewhere but I have yet to be able to bring myself to do it. I'm sure someday if we find the right place I may be able to do it. We also did not hold a service right away. My survivors were still in the NICU and I just didn't feel like I could do it. We ended up holding a memorial for her when things were a little calmer at home and I was able to devote time to planning it. I am so glad we waited to do it, it was exactly what I wanted for her.

I am so sorry that you are going through this awful situation and having to think about this each day. You and your family are always in my thoughts.

Jessica
Mom to Parker, McKenna, ^Hadley^ born 10/9/07 28w5d
little brother Sawyer
and big sister Ashlyn
www.fourplusanangel.com

When I was in the hospital in premature labor. The doctors kept telling me if I had the trio before 24 weeks I would lose them. I knew then that we what cemetery they would be at and that I would want them all together in the same coffin. Since they all came into this world together I wanted them to be together if they all died. I got to bring them all home and at 14 months old we lost Hayden. It was the hardest thing ever. But I still knew what cemetery I wanted him in. At the time if was because I have alot of family burried at the same cemetery so it felt right. It was somewhere close so I can go to his site anytime. Sometimes I regret where we burried him because he can't have stuff at his site all the time. But the truth is I am glad he is where he is burried at. He is not far from my grandfather. Scott and I each have a plot next to him. We didn't even think about cremating him. I couldn't do it. We do have a little box with his name on it and his dates. It also has his angel picture on it. It has some of his hair in it, some other things from the hospital and then his outfit he wore the day he passed away.
As for the funeral do what you guys are comfortable with. We had calling hours and the service the next day. This is what worked for us. I needed the people around me. Alot of the people that came to the service didn't know Hayden but they knew scott and I. Or there were people there that just knew our parents. Our pastor talked we had someone sing. We didn't have anyone else talk but I kind of wish I did now. But we were not in the right frame of minds at the time.
If you want something small do it. If you want something bigger do it. I don't think it matters so much if people know Piper as much as them just trying to comfort you. But sometimes you don't want the people around and that is fine also. I am so sorry that you are going through this. I think of you guys often.

Jaclyn

http://thesheridangang.blogspot.com/

So sorry you are going through this. As Jackie said when we lost Hayden it was a shock and were lost with what to do. They had a beauitful funeral for him. We have a big family and a large church family. Most of the church knew him. We had about 250 people show up for the calling hours, the support was unreal. I am glad Jackie did not have him cremated, on bad days I go out and cry for aa long time and I talk to him. I know he is in Gods arms and i am at peace wuth it. BUT I MISS HIM SO MUCH AND IT HAS BEEN ALMSOT 3 YEARS. YOU DO WHAT YOUR HEART TELLS YOU TO DO. IF HE OOS CREAMATED I COULD NEVER LET GO OF THE ASHES. YOU ARE IN MY PRAYERS
I LOVE YOU HAYDEN GRANNY

I am sorry you have to deal with this. We cremated Alex because we needed make a quick decision. We never had any service for him. My family is not involved with the boys and dad's family is only semi involved so we wouldn't really have had any there anyway. I like the cremation because if we ever move Alex would have to stay behind with cremation we can take with us. I am still looking for an urn for him. If you have people that can come I would celebrate her life. I hope you get a few more months with Piper. I just thought of something there are places that will take pictures of you an your family for free if you have a ill child. I have had no luck getting in touch with one in my area but maybe you can try. I don't have the website though my computer deleted all my bookmarks.

Our little angel
^Alex Joseph^ (11-4/11-5)
Brennan Matthew
Christian Jacob

"
Big brother Justin 8

I am so very sorry to hear about Piper. It just seems so wrong that you are having to think about this stuff.

We lost June when she was only 6 1/2 months old. We had a service for her in our back yard a few weeks later. My husband is semi Catholic and I am not. We decided to have a spiritual service for he and his family. In between the religious parts, we read her favorite stories, some poetry that was meaningful to me and played music. We had some of her things on display and her ashes too. People also spoke about what she meant to them. We made a slide show of her life that we all watched at the end of the service. Our babies too were kept away from most everyone due to RSV season so I felt similar to you. I was surprised by how our sweet June had affected our freinds and family despite not really knowing her. The service was therapuetic for me and beautiful. It helped me to begin grieving. I was in denial that she was really gone for a long time. God, I miss her.

I also recommend getting in touch with Now I lay me down to sleep or Moment by Moment. These are both organizations that take absolutely breathtaking photographs of babies and children that are dying. I wish I had some of my children who are no longer here.

I am sending you as many hugs as you can handle. I am so so so sorry. PM me if you want to talk more.

Andrea

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