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*Miscarriage/Loss Mentioned* Expectant Loss 'Birth Plan'

RachelRex00RachelRex00 member
in Late Term and Child Loss
I'm sorry if this is the wrong place to post this, but I wasn't sure where this, and I, really belong in the community right now. I am pregnant with our first child and we found out at 16 weeks that there is a serious problem with the baby's bladder not emptying which then causes lack of fluid and inability for other organs to grow. We've been told that we will lose our baby either by miscarriage or shortly after birth. As horrible and devastating as this news was for us, we were blessed to get it so early so that we've had time to emotionally prepare (as much as we can). Now that we are at 31 weeks, we are trying to prepare as much as we can for the birth. Based on the information and opinions we've received from our many doctors, we are not planning on consenting to any procedures or surgeries for our little one after birth. If we are blessed enough for them to be born alive we want to simply spend all the time we have with them, and not have them taken from us for any reason. I know ours is a unique situation, but I am trying to plan ahead on how to communicate this to our nurses and staff. Does anyone who's maybe been through anything similar or just birth in general have any ideas on the best way to do this? My current thought is for my husband and I to write up a 'birth plan' to put in our file so all our caregivers are aware of the situation but then I worry that some might not take the time to read it and the last thing I want to do is be explaining why I'm not giving the nurses my baby when I'm trying to bond with them. Any help or advice would be appreciated.
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Re: *Miscarriage/Loss Mentioned* Expectant Loss 'Birth Plan'

  • Auki13Auki13 member
    First of all, I am so sorry you are going through this.  It is not an easy process at all.  We were in a similar situation, but with a different diagnoses and we decided to carry to term as well.  We did create a special birth plan after reading a few books about how others "planned" for the birth and death of their little one and we were very at peace with how the day itself went.  We also contacted the perinatal loss specialist at the hospital who was able to go through our plan with us and was there the day I delivered.  She was incredibly helpful following through with our plans and went above and beyond to make sure our wishes were followed through.  I am not sure exactly how much information you would like, but please feel free to private message me or contact me here on this board if you would like more information about our personal birth plan.  We focused on getting in as many memories as possible (we didn't know if Annabelle would be born alive or not, but we were blessed with an hour before she passed) and made sure to get lots of pictures, hand and footprints, and kept her in our room for as long as we wanted.  
    Also, I am not sure if you have been in contact with NILMDTS, but they are a non-profit organization that takes professional pictures of your little one and are trained at taking pictures of babies who are still born, or born with terminal diagnoses.  We treasure our pictures from them, and I definitely recommend contacting them.
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  • Suern9870Suern9870 member
    As an RN I can tell you that nurses "report off" to each other; they'll fill each other in on your medical history and the babies' condition whenever there is a change of shift or even if your primary nurse just goes on a break.  You may need to fill the first nurse in as far as your birth plan, and putting it in writing wouldn't hurt, but each subsequent nurse should be aware of your situation and what your plans are. I'm sorry you're going through this.  
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  • cherrycobblercherrycobbler member
    I'm so sorry you are going through this.  I don't have any specific experience with your situation, but wanted to offer what I can.  I would think that writing a birth plan is a good start, but if your doctor will be there for the delivery I would hope that they would inform the rest of the staff about your situation and your wishes will be respected.  You could also contact the chaplain at the hospital, they might have some advise for you as well or can steer you in the right direction.  There is also a Bump Loss Blog link at the top of the page (and my sig) and there is a "what to expect" section with some ideas that might help you make the most of your time with your little one.  I wish you a peaceful delivery. 
    BFP#1: EDD 10/11/11 Our sweet boy Robin was born 7 weeks a little early on 8/23/11 due to HELLP syndrome, unfortunately he was diagnosed with Trisomy13 and left us on 8/29/11. BFP#2: EDD 10/13/13
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  • RachelRex00RachelRex00 member
    Thank you so much. I feel a lot less worried now. I was so nervous I was going to have to relate our situation to each nurse which is something I definitely did not want to have to do. Auki, I'm sorry to hear that you've been through a similar situation. Thank you so much for your kind words. I'm going to look into that NILMDTS group, what a wonderful group of people. Thanks again :)
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  • pb127pb127 member
    You're in the right place, and I'm sorry you have to be here. I second Auki's suggestion of NILMDTS, I treasure our pictures.  Thinking of you in the weeks ahead. *hugs*
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  • ally2011ally2011 member

    There is another loss mom here who has been through this too, Careyalis, I will page her.

    I agree with contacting your hospital, there is definitely someone there that should be able to help you.  Your OB may know, or if you try L&D and explain they should be able to help point you in the right direction.  There is likely a palliative care unit that could help, and I would also definitely call your local Hospice.  If they are anything like ours, they will have some resources.

    And just FYI on the post about, the initials stand for Now I Lay Me Down To Sleep.

    I am incredibly sorry for what you are going through.  We are all here for you, you are absolutely in the right place.  I remember calling the funeral home before my daughter was born and just thinking how surreal it all was.  We are here to help you through....it is a long, hard road, but it is better with others who understand.

    Hugs,

    Jenn 

    We are so thankful that our second daughter, Lillian Elizabeth "Lily", was born healthy and happy on February 11, 2013.  We love her to pieces.  

    We lost our first daughter, Hannah Grace on May 4, 2011.  She was buried on May 14 during a beautiful service at my home church. We are grateful that if she could not be here with us, that she is healed and whole with the Lord. We look forward to the day when we will get to meet her. We love her so much.


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  • careyaliscareyalis member
    I am so very sorry for your situation.  Like Jenn said, we had a similar experience with our daughter this past February.  My blog link is below if you are interested in reading Avery's story.  I would be more than happy to answer any questions that you may have, no matter how personal or tough they are to answer.  I was so thankful to have people like Auki to talk to when I was carrying to term and I treasure all of the special memories that we were able to make during our daughter's short life.  I am going to pm you all of my info.  Please please please do not hesitat to call or email.  I can email you my birth plan if you would like as well.  You are in my thoughts and prayers!



    My angel Avery- 2/16/12, My rainbow Blake= 3/4/13, Joyfully awaiting #3 5/11/15
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  • Bread09Bread09 member

    I'm so sorry that you're going through this.  We found out at our 19 week level two u/s that twin A had serious complications.  The likelihood of her surviving seemed to change from week to week depending on her growth and depended on so many factors and as much as we held out hope, looking back, we had a ton of odds stacked against us.  We found out a few weeks before I gave birth that she would not survive as she had stopped growing and her fluid was disappearing. 

    i went into planning mode and I second a lot of what the others said--especially using NILMDTS.  Those pictures we have of her are so wonderful.  I also recommend the book "The Gift of Time."  At our hospital, (I was at a very high risk hospital) there was a team of nurses that would work with families in situations like this or with other loss situations.  They were great about reporting to each other and we only had to say things once.  I was stressed about that as well especially because I knew I was having a c-section.  I ended up having a complicated c-section, but they did bring her to me right away and let me hold her and then my husband took her to family and to be baptized while they were dealing with me.  It actually all worked out smoothly.  Also, our hospital had a nurse take pics (she does photography on the side) in the OR as my daughter (and my son) were being born so we got great pics there too since they wouldn't allow anyone extra in the OR (like the woman from NILMDTS--she took pics when we were in our room). 

    I'm sorry this is so scattered.  Please let me know if there is anything else I can do.  I will be thinking of you and your family.

    TTC #1 since 4/09
    2/21/11: IVF #1 Begins and results in TWINS!
    11/4/11: The twins are born at 36w4d!
    11/5/11: We said goodbye to our sweet baby girl as she was born with multiple complications and a severe heart defect, Hypoplastic Left Heart Syndrome.
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