Tuesday, February 4, 2014

When Love is the Enemy

Dear Ellie,

Everything is backward here in the NICU.  All of the parental instincts that would comfort you and nurture you are instead the things that will hurt you.  Touching or kissing you will damage your skin.  Peeking beneath the blanket that covers your incubator makes you uncomfortable.  And were your mother to try to nurse you?  Unconscionable.  Your brain is so nascent that it interprets all of these gestures of love as painful invasions.  As malicious.  And so here in this place, all of the instincts we have been endowed by nature are now the enemy.  Love is the enemy.  

I feel guilty for just being here.  It doesn’t help.  I can only get in the way or be a distraction to the nurses and doctors.  Parents that come here at such an early time in a baby’s life believe they are here for their baby, but that isn't really true.  They are here for themselves.  The same is true for me.  I feel like some kind of emotional leech latched to your bedside, trying to satisfy my hunger for parenthood.  

Fortunately, though you have been put in the custody of new parents for a time.  Decades of accumulated knowledge has become your mother.  The rigid instruments of science and medicine, your father.  The cold hand of empiricism strokes your forehead. 

I’m strangely okay with this.  In a way, the unnatural seems natural.  It takes billions of dollars and scores of scientists to send a probe to Mars, yet you are far more complex than some rocket or rover.  You are human; your little brain is one of the most complex things in the Universe.  If it takes so much to send a man made object to Mars, shouldn’t it take such careful training, such vast reservoirs of knowledge, to keep you alive?      


  1. Hi Dana,
    This is beautifully written. So many wise words and a great reflection of what NICU life is like.
    My Dad (Joe Beck) filled me in on the arrival of Ellie. She is beautiful. I saw the post pop up on my FB page and felt it necessary to reach out to you- from one NICU parent to another. When I entered the world on NICU parent 2.5 years ago, i learned a lot- fast. 1) these premature babies are the strongest people that i ever had the pleasure of meeting in my entire life. 2) even though this is the most unnatural of circumstances (NICU life)... instincts are the most valuable tool that you possess. Please never second guess those instincts. It's all that is natural. Even if you aren't sure that you feel any. For me, they were there, under the surface and they would alarm. I thought maybe i was over reacting, but i wasn't. You are in every way a parent. and I would argue that you are one of the strongest parents that there is. Its not like we asked to be.... but it just is. Its not fair at all.

    I made a few mistakes when I was in the NICU and I want to share them with you only to help.
    1) I stayed out of the way thinking that if I was there too much that I was keeping the nurses and doctors from doing a god job. Major mistake. Looking back, the times that he did the best was when me or my husband were around. His CO2 levels would drop and he would brush his feet back and forth with comfort.
    To be honest I was scared- who wouldn't be?? But I never asked to change his diaper... something I could have done. I let the nurses do it. But this was one of the only ways that I could parent him and I feel regret that I allowed someone else to do it. I didn't understand my own authority. You are in charge. Even though it definitely doesn't feel like it. You are. You are protecting your child with every decision. You are parenting under the hardest of circumstances. I didn't ask to speak with the attending doctor enough. I spoke a lot with nurses and residents.... but i wish that I would have asked to speak with the resident more.

    2) I didn't take a video. Something so simple and it haunts me every day. I feel like after the whirlwind of the NICU it would be a great thing to have. No matter the outcome, it's good to be able to have proof that this happened.... because it is surreal, all of it.

    3) I didn't take enough pictures. I felt like I was taking the same picture over and over again and I deleted them. I wish that I wouldn't have done that.

    These are things I wish someone would have told me.... so i am paying it forward. I am wishing the absolute best for you guys, all three of you. Hoping that you can find courage and beauty even in these very difficult and trying times. xo- Laura

  2. Thank you Laura, I'm glad to have been able to talk to you. I've been following your own trials for some time now, through Joe. He's a wonderful man. Someone who couldn't be anything but someone's friend. I think everyone handle's the NICU differently. Some people want to go forward believing that things will be fine, even if they may not be. Others will surround themselves with success stories, hoping that by flooding their eyes with the victories of others, it will somehow define their outcome. I've been told more than once to just "stop thinking," but that makes me feel worse. All of those methods just don't seem to bring me the same comfort that it brings others.

    The cold, bare truth does. The statistics and the full spectrum of good and bad. I think it lets me come to peace with all of the potential outcomes ahead of time, and in doing so, I can go forward knowing that I will survive them.

    I'm finding that a lot of your advice is true. About the pictures and the videos. At first, I was afraid to take them because I thought that if I did and Ellie didn't make it, I wouldn't be able to forget her. I remember while Rani was on bedrest and we were facing a 22 week delivery, I decided that I wasn't going to see Ellie if she was born so soon. I didn't want her to be real. I wanted to just pretend like she never existed. But now that she's here, I can't imagine forgetting her, regardless of the outcome.

    As for touching her, the nurses have actually been very encouraging about contact, but Rani and I have always declined. If I thought it would help her, I'd do it, but at her current brain development she can't comprehend what such a touch could mean, so we're reserved about doing it.

    Thank you for writing.

  3. Dear Dana and Rani,

    Congratulations for having Ellie !

    All three of you are going through a very difficult phase of your life but remember this too will pass. Dana, I am really lost for words and I feel very numb. I just wish Ellie gives a bold fight against all the odds. Do not think Ellie might not be knowing you both. Science might say otherwise but her soul will know you both. She will derive all the strength to fight from both of you as you derive your strength from her. She will definitely feel your love and pain. Be connected with her all the time via your thoughts, do not think about science or statistics, listen to your heart. Love can never be her enemy, love is what will help her during this difficult time. Even if you do not touch her she will feel your love intuitively.

    Dana, you both must take care of yourself. Arm yourself with information, remember that all the decisions you take now will shape Ellie's destiny. It is not easy to take decisions when going through such a difficult phase so please do not hesitate to seek help whenever needed.

    I will write to you.


  4. Manju! I was so worried and saddened when your blog went cold this December. I was heartbroken by your loss. I've never wanted a happy ending for anyone more than for you. You had every right to be bitter or angry by it all, but you weren't. You picked yourself up and showed us all that there is always a way forward. An inspiration.

    I'm not really discouraged by our circumstances or our inability to do anything for little Ellie, at the moment. It's like parenthood in any particular circumstance: what's best for them is not always best for you. We're oozing love and adoration from every pore of our bodies, so yes, I believe you are right. When we feel strongly a certain way, they inevitably manifest themselves in action.