Alice Posted June 5, 2014 Share Posted June 5, 2014 So sorry you and your family are going through this. I'm a pediatrician and I don't think you are nuts at all. I've seen several families go through the death of a baby or child and each family grieves in their own way. In my experience, what seems to most important is that people are allowed to grieve. Even if the baby wasn't at home, it's not like his siblings wouldn't be grieving. I can't give better advice than the advice given earlier by those who have lived through something similar. I think the idea for contacting hospice is a great one.I was going to also suggest you could talk to your pediatrician, who might have resources for counselors for the kids. It might even be good to have them talk to someone before the birth so they are comfortable with the person ahead of time. I don't know who at the hospital you've talked to, but unless they are the people who made you feel like you were nuts, you might call the NICU and ask them if they have any contacts for siblings. They definitely deal with infant death all the time and usually have counselors who are available for families. Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 5, 2014 Share Posted June 5, 2014 I am sorry, this must be difficult to go through. I think bringing the baby home is the right thing. As far as counseling, you may want to check with hospice in your area. My local hospice has excellent grief counseling and has support groups. If yours doesn't they probably maintain a list of grief counselors. Quote Link to comment Share on other sites More sharing options...
applethyme Posted June 5, 2014 Share Posted June 5, 2014 :grouphug: :grouphug: Our local hospice has a childrens grief counselor as well as a summer camp for kids who have lost a loved one. Quote Link to comment Share on other sites More sharing options...
Just Another Jen Posted June 5, 2014 Share Posted June 5, 2014 Our youngest had Trisomy 18 and died in utero at 22 weeks. Our plan had been to bring him home. We had only known for 2 weeks so it all happened pretty fast for us. My then 3 yo doesn't remember anything from that time (he is 8 now). Our older kids do remember and no matter how long your baby lives for, your kids have a sibling that they will love and lose. I think finding a supportive team now is key. Talk to hospice and get a team lined up who has some experience with babies. I am so sorry you have to go through this. You are absolutely doing the right thing. Hugs. Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 5, 2014 Share Posted June 5, 2014 One of my best friends had a baby with trisomy 18 last year. I was amazed by how much pressure to abort they received, and how condescending the medical staff was in light of their refusal. They stayed strong, and we're able to spend a blessed hour with their son before he passed away. I'm the mom of a severely disabled child, who wasn't expected to live more than a few years. You've made the main decision, now just allow yourself flexibility while walking it out. Let this be a season of trusting yourself and whatever decisions you find yourself needing to make along the way. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted June 5, 2014 Share Posted June 5, 2014 :grouphug: Have you checked online support groups? I think you are going in the right direction. I know the prognosis is low for reaching first birthday, however, my ds (down syndrome) attended a special needs preschool will a boy who had trisomy 18. The boy is 11 now. Sometime after preschool her dh's career took them to England and then Brazil. I think they are back in the states on the west coast now. They have 2 younger dc so initially they didn't have any siblings to prepare or explain to. The boy has significant needs, but he's doing well and the family is doing well. Anyway, I just wanted to let you know there are other outcomes. It's hard to imagine when you just see statistics. Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted June 5, 2014 Share Posted June 5, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted June 5, 2014 Share Posted June 5, 2014 :grouphug: :grouphug: :grouphug: I, too, would want to bring my baby home. I am so sorry you and your family must walk down this path. You will be in my prayers. Quote Link to comment Share on other sites More sharing options...
PrairieSong Posted June 5, 2014 Share Posted June 5, 2014 I'm so very sorry about your baby! I would do the exact same thing and bring my baby home to be with the family, to let all the siblings show him/her love and say goodbye. I will pray for you. {{{hugs}}} Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted June 5, 2014 Share Posted June 5, 2014 :grouphug: I am very sorry. I would want to do the same. I would make sure the kids are prepared, of course. My Mom and her siblings had something similar happen, but the baby never made it home. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted June 5, 2014 Share Posted June 5, 2014 Feel free to pm me if you want to know the dynamics of how things went down in our house in terms of sibling grief. In terms of resources: *www.castingkeepsakes.com--we did 3d molds of me holding my dd's hand; every detail down to the pores and lines of our skin came out *silver thumbprint necklaces--there are a variety of kits out there--I did a thumbprint of all of my children, and I wear that as a subtle piece of keepsake jewelry There is also a group (and I can track down the information for you) that does photography in hospital. Having tangible photographs and video has been very helpful as my kids reprocess with each developmental stage how things played out. Child life was also great about talking about stuff with my kids. They also had a great lending library of books dealing with death for children. Quote Link to comment Share on other sites More sharing options...
catz Posted June 5, 2014 Share Posted June 5, 2014 I do not have experience, but I wanted to say that I don't think you're nuts. Many hugs as you traverse this sad path. I agree. You're not nuts at all. You're giving your sweet baby and good life and possibly a good death surrounded by love. You're teaching your children death is a natural part of life. It's all beautiful and good. I would do the same as well. I know people who have walked this path. Sending you much love and peace. :grouphug: Quote Link to comment Share on other sites More sharing options...
Annie Laurie Posted June 5, 2014 Share Posted June 5, 2014 I'm so sorry. Whatever you and your husband feel is the right thing to do is the right thing to do. :grouphug: Quote Link to comment Share on other sites More sharing options...
texasmama Posted June 5, 2014 Share Posted June 5, 2014 (((hugs))) for your mama heart. I think your goal to bring your baby home is beautiful. I agree that having a mystical sibling dying in a hospital is "weirder" than having a real, sick baby at home. Because you know that your baby has a fatal genetic disorder, you can prepare your other children and then walk this together. Due to the ages of your kids, they will obviously experience the eventual loss very differently. Where are you located? I wish you were near me. I would love to work with your family around this issue of loss. I just keep thinking how sacred this experience is and will be for your family, mama. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Annie Elle Posted June 5, 2014 Share Posted June 5, 2014 Please consider hospice. As a hospice nurse, we do more than just care for the patient. We also have counseling services for family members that continue for 13 months after the death for those that need it. Quote Link to comment Share on other sites More sharing options...
HRAAB Posted June 5, 2014 Share Posted June 5, 2014 No, you're not nuts. :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Scrub Jay Posted June 5, 2014 Share Posted June 5, 2014 I am very sorry. An online friend had a daughter with Trisomy 18. She has shared her story and there was even a book. https://www.nowilaymedowntosleep.org/faqs/darcy-anne-ramos/ Just sharing in case you find her story helpful (she is very religious, just FYI). Quote Link to comment Share on other sites More sharing options...
lamppost Posted June 5, 2014 Share Posted June 5, 2014 There is also a group (and I can track down the information for you) that does photography in hospital. Having tangible photographs and video has been very helpful as my kids reprocess with each developmental stage how things played out. Here it is: https://www.nowilaymedowntosleep.org/ And another organization: http://stringofpearlsonline.org/ Quote Link to comment Share on other sites More sharing options...
goldberry Posted June 5, 2014 Share Posted June 5, 2014 Not comparable in any way, but when DD was little, her grandma and another friend had to have pets put to sleep. When our own kitty was at her end (DD was 5) she expressed to me about "pets going to the vet and never coming back". As you mentioned, she was imagining what was happening since she did not know the reality. We made a decision to involve her in the process, she got to see kitty after the cat was dead, touch her, etc. She was sad, but not horrified or traumatized, and it was so much better than "pets disappearing at the vet". You are not nuts at all, I would make the same choice. ETA, it also helps cement the concept of family. We go through these things, they are bad sometimes, but we go through them together, as a family. Quote Link to comment Share on other sites More sharing options...
basketcase Posted June 5, 2014 Share Posted June 5, 2014 I'm adding a link to a blog post written by the friend of a friend. It refers often to her faith, but I immediately thought of it because these are parents with older children who made the same choice you did, when pregnant wih a child with the same condition. I love that their sweet baby was virtually never laid down during her short life. It's an emotional read. http://www.mormonwomen.com/2014/03/13/loving-allegra/ Quote Link to comment Share on other sites More sharing options...
wonderchica Posted June 5, 2014 Share Posted June 5, 2014 I would like to reply as someone who lost a sibling at a young age. I was five when my brother passed away after a 3 week hospital stay, his whole life. He was never able to come home, although I did meet him and hold him and we were at the hospital the whole time. I was five, but gifted so maybe experienced the event a little differently than typical fives. My mom read an article years later that said children often go through the grieving process several times as they age and reach new developmental levels. Age allows children to understand and grieve in a different way. For me, in order to process my brother's death I needed to talk about it constantly. My parents tried to let me do that but it was just too difficult for them. I suggest getting your children some sort of grief counseling, with a neutral person they can talk to so it won't be so overwhelming to you. I think not being able to "talk it out" freely hindered me a lot. Your child's life and death will profoundly change you and your family. It just won't be the same again. It can be hard for children to understand why things are different now. That's something I struggled with a lot as a child. Quote Link to comment Share on other sites More sharing options...
Word Nerd Posted June 6, 2014 Share Posted June 6, 2014 :grouphug: I'm sorry you and your family have to go through this and make these decisions, and I'm sorry for the others here who have lost children as well. Quote Link to comment Share on other sites More sharing options...
Ohdanigirl Posted June 6, 2014 Share Posted June 6, 2014 I'm so sorry. I don't think I can be of much help, but I am sending many hugs and prayers your way. I believe your heart is leading you in the right direction. Shame on anyone for suggesting you are nuts for your decision. You previous baby has every right to spend ever blessed day surrounded in love, and your other DC have every right to offer and share in that love. As far as their reactions, I can say that littles will likely ask many question and find a need to talk. Regardless of how little they may know a sibling, it does not change the fact that they to will be grieving. If you can find anyone for them to reach out to, please do. I never mentioned it here before, but dh's daughter passed in an accident this past August. I assumed that my DC would not be very affected, because they had not met her. It was only this past week that my oldest broke down crying for his sister. They were two years apart and had spent many hours IMing each other via Facebook. I feel terrible that he had been grieving inwardly all this time. I know it is very different from your situation, but children develop strong bonds and love so much easier than we adults. Any memories you can give to your children and yourself will be cherished gifts. Again, many hugs. Quote Link to comment Share on other sites More sharing options...
LucyStoner Posted June 6, 2014 Share Posted June 6, 2014 I am very sorry that you are facing such a heart wrenching situation. In your shoes, I would do the same. I don't think you are crazy. Not one tiny bit. Quote Link to comment Share on other sites More sharing options...
EmilyGF Posted June 21, 2014 Author Share Posted June 21, 2014 Thanks for the input and personal stories. Our son lived for 90 minutes and we were able to involve our older children with him. We all held him for his short life. As the pediatrician realized that he was dead, our 2.5 year old patted him on the head and said, "Bye bye baby!" as he left the room. We named him Joseph Barnabas. Quote Link to comment Share on other sites More sharing options...
MrsMommy Posted June 21, 2014 Share Posted June 21, 2014 I am so sorry for your loss. Quote Link to comment Share on other sites More sharing options...
Corraleno Posted June 21, 2014 Share Posted June 21, 2014 I'm so sorry, Emily. :crying: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted June 21, 2014 Share Posted June 21, 2014 I'm sorry, Emily. It sounds like his short life was drenched in the love and support of his parents and siblings. Beautiful. :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted June 21, 2014 Share Posted June 21, 2014 I am so sorry for your loss and am thankful you were able to involve the siblings in the way you had wanted. (((Hugs))) Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted June 21, 2014 Share Posted June 21, 2014 so sorry for your loss of baby Joseph. Quote Link to comment Share on other sites More sharing options...
texasmama Posted June 21, 2014 Share Posted June 21, 2014 Thoughts and prayers to you and your family. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Liz CA Posted June 21, 2014 Share Posted June 21, 2014 Responding to your update: :grouphug: I am glad everyone got to see him and you know he felt loved and cared for. Praying for comfort for you all. Quote Link to comment Share on other sites More sharing options...
G5052 Posted June 21, 2014 Share Posted June 21, 2014 Thanks for the input and personal stories. Our son lived for 90 minutes and we were able to involve our older children with him. We all held him for his short life. As the pediatrician realized that he was dead, our 2.5 year old patted him on the head and said, "Bye bye baby!" as he left the room. We named him Joseph Barnabas. I'm so sorry to hear that this chapter came quietly to a close. It must be so hard for you all! :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
BrittanyM Posted June 21, 2014 Share Posted June 21, 2014 I am so glad you were able to make some memories with baby Joey and I will keep you in my prayers. I am so sorry. Quote Link to comment Share on other sites More sharing options...
Cinder Posted June 21, 2014 Share Posted June 21, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
TracyP Posted June 21, 2014 Share Posted June 21, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Twigs Posted June 21, 2014 Share Posted June 21, 2014 I am so very sorry. My heart weeps for you. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Pink and Green Mom Posted June 21, 2014 Share Posted June 21, 2014 I am so, so sorry. :grouphug: Quote Link to comment Share on other sites More sharing options...
mumto2 Posted June 21, 2014 Share Posted June 21, 2014 I am so sorry. :grouphug: Quote Link to comment Share on other sites More sharing options...
umsami Posted June 21, 2014 Share Posted June 21, 2014 I am so sorry for the loss, but happy you and your family got that time with him…however short. Rest in peace, little Joseph Barnabus. You and your family will be in my prayers. Quote Link to comment Share on other sites More sharing options...
TCB Posted June 21, 2014 Share Posted June 21, 2014 I am so sorry for your loss of your baby :grouphug: Quote Link to comment Share on other sites More sharing options...
Eagle Posted June 21, 2014 Share Posted June 21, 2014 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted June 21, 2014 Share Posted June 21, 2014 I am so sorry. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Soror Posted June 21, 2014 Share Posted June 21, 2014 I'm so sorry for your loss :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Stacia Posted June 21, 2014 Share Posted June 21, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
lmrich Posted June 21, 2014 Share Posted June 21, 2014 So sorry. Your grace and strength have amazed me. You will be in my prayers. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted June 21, 2014 Share Posted June 21, 2014 Awwww, I have a Joey, too. I'm thankful you and your baby and family had time together and support. I'm sorry for your loss. :grouphug: Quote Link to comment Share on other sites More sharing options...
elfgivas Posted June 21, 2014 Share Posted June 21, 2014 :grouphug: :grouphug: :grouphug: i am glad everyone got to spend time together. i am so sorry for your loss. blessings, ann Quote Link to comment Share on other sites More sharing options...
Tress Posted June 21, 2014 Share Posted June 21, 2014 I'm so sorry for your loss. :grouphug: I'm glad you got to hold Joseph and surround him with your love. Quote Link to comment Share on other sites More sharing options...
clarkacademy Posted June 21, 2014 Share Posted June 21, 2014 so very sorry :grouphug: Quote Link to comment Share on other sites More sharing options...
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