Friday, April 29, 2011

A Talk With The NICU Coordinator and Nurse

The head of volunteer services had sent me an email the other day wanting to talk to me about how I was doing in the NICU since it had been a couple weeks since I started. She also mentioned in her email that she was wondering how I was handling being there in regards to the loss of my baby.  I never once mentioned to the volunteer coordinator anything about me ever being pregnant or that I lost Liam.
Sure I would love to tell everybody about Liam and my true reasoning behind wanting to help cuddle babies in the NICU. I thought though that if I told her about Liam she wouldn't think I'd be emotionally stable enough to handle it or that maybe I would be one of the crazy people that would steal a baby. Remembering of course what I learned in orientation that the most common people to steal a baby is a mother who has recently lost a child. 
I was getting nervous to want to go into to talk to her but sent her an email back that I would stop in on Thursday(yesterday) after my NICU shift. I was assuming that the girl who trained me in is who probably told the coordinator about my recent babyloss. I was wondering if she would share this info I told her about my life or keep it to herself. 
So I was right about my trainer telling the coordinator about Liam. The good news is that she didn't care. She was just concerned about me and just wanted to know a little more about my situation. She explained to me that everyone has their own reasoning for why they want to volunteer and thinks that it is wonderful that I want to be there to help those babies. She also informed me she understands my grief because she had lost a child also, her child was older, but the pain is the same. She also said that if I ever am having a rough day that she fully understands if I can't make it in for my shift. She also let me know that even if its in the middle of my shift and I start having a hard time, that it is okay if I need to get up and leave early. That was so nice to hear her say that to me.

Yesterday I also received a phone call from my favorite nurse. Last time we spoke I asked her if there was any way I could get in touch with any of the other fetal surgery moms that had lost there babies also. She said she searched but that the two moms who lost their babies following surgery that were in the MOMS study were done at another hospital, which I knew, but because of that she can't get access to their info. She also looked through other fetal surgery cases that they have done and it appears that I just seem to be the only one to have my baby die in surgery, which I knew also since the doctors told me after surgery. She was sorry she couldn't help me more but in a way it is good to hear that she can't find any similar cases like mine. I guess that just proves that I went to the best possible doctors, it just sucks that I have to be the one and only.
Truthfully though, since I have talked to those two fetal surgery moms, whose babies lived and are growing and healthy, about their pregnancies following the fetal surgery and have all of you blm's for support, I have found a lot of hope and some much needed comfort. Still don't like the situation, and will always wish that things could have ended differently, but don't we all.

Dear Friends,
If you were to ask me to measure the love I have
for any member of my family,
I would be hard pressed to answer.
Surely my love is higher than mountain tops
And deeper than the oceans
And broader than all the deserts in the world.
So too is my love for the baby who has died.
How can I be asked to pack away mementos and memories
and not speak his name?
He is and always will be a part of me.
No one can crate the depths of the ocean,
The breadth of the deserts,
Nor can my love be boxed and carried away.
Dear friends,
Please do not set limits on my grief.
Neither my love
Nor the depths of my sorrow can be measured.
I am unable to heal on a timetable set by another.
Weeks and months have no meaning
when set against the measure of my love.
Walk with me please, this difficult road of recovery,
I promise you I will heal,
When I have grieved enough for me.

By Eloise Cole, taken from the dead baby club blog


  1. I'm so glad that the talk with the coordinator was a supportive one! Also I'm actually somewhat shocked that there were no other fetal surgery cases that ended with the death of a baby. I guess that shows how far modern medicine has come. It just sucks that modern medicine couldn't have saved our babies too.

  2. That is so nice that the coordinator is understanding. It must be a huge relief for you! I can only try to imagine how hard it must be, that your case is the only one that you can find! I'm always here, even though we started out with different stories, we're walking the same path!
    Sending you and Liam lots of Love!

  3. Lovely that your coordinator is so compassionate.... I admire you so much for doing this work for little NICU bubs when it must be so heart-wrenching for you. Thank you for sharing that poem... it's beautiful xoxo

  4. I love the poem. Thanks for posting. I just realized today how close our baby's names our...Liam & Leia. They are both such beautiful names. Thinking of you and Liam.

  5. Liam and Leia- defnitely two very beautiful names

  6. I love that the co-ordinator was so open and helpful. And a loss for her too? So much more common than I ever though (hoped/dreamed/imagined).

    Glad you're continuing to do this. So amazing.

  7. Wow, Im glad you have met some understanding people in this. Nice to have her to relate to and know how this is. That is great your doing this. thanks for sharing.


    -Isha @ I am for you



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