Thursday, September 1, 2011

Princess Preemie Primer via Natasha at Normally Insane

Its Princess Preemie Primer Thursday again.  Today's primer is brought to you by Natasha at Normally Insane.  Natasha is the mother of Sunshine and Little Miss and an angel, Jamie.  You should check out her blog where she is balancing grief and joy, home and career.  She crafts alot, sleeps little, and survives on caffeine.  Struggling to be Normally Insane.  You can also find Natasha on Twitter.   

Today Natasha is talking about something I didn't know about until I read her post.  Ambiguous loss is a feeling that a lot of preemie parents feel, but don't realize that there is actually a term for the feelings they are experiencing.  I'll let Natasha tell you the rest.

When I volunteered to write this post I left myself with a quandary. What in the world would I write?! I could simply tell you my daughter’s story. Share the harrowing weeks we spent fighting for her life and praying for my cervix to hold long enough to give her a fighting chance. I could tell you about the days that we spent hunched over her isollete, counting grams of her weight gain, holding our breath as she held hers and restarting our hearts as she did hers. But then I decided that I am going to share something else with you, something that hopefully can offer you a glimpse in the trauma that is premature birth.

My daughter was born at 27 weeks. To say that it was unexpected would be a lie. We knew that she was in a rush. At 22 weeks my cervix disappeared completely, despite progesterone shots and a circlage. From that point on “one day at a time” became my mantra and each day became a victory in its own right. So, no, I cannot say that I did not expect an early appearance. To say that it was welcomed though is a lie as well. I still remember the bitter tears as my OB walked through the door of my hospital room and my protests trying to convince the universe at large that it was too early. She came in a flurry of activity. She cried. We were ecstatic that she was alive and then in a matter of minutes she was whisked away. We have had long chat with neonatologist before this day. We knew what was to come after birth. One thing that I was not prepared for was the reaction of those around us, or better yet, my reaction to them.

When a baby is born it marks an occasion to celebrate. There are gifts. There is usually food and there are many visitors. A new life enters the world with a lot of hopes and dreams riding on its tiny shoulder. People say “congrats!” without even thinking. But when I heard congratulations on the birth of our daughter I recoiled. Some days I was ready to scream “Why would you congratulate me?!” After all, my body failed her. I, the parent, the one that supposed to protect her, failed her miserably. Those were the very bad days. On other days I would wearily nod my head and brush it aside as I rushed to or from the hospital, entirely overwhelmed with exhaustion of daily NICU routine. Either way, the congratulations were not welcomed. I did not know how to respond to them. I felt guilty (yet bazillionth reason to feel guilty) that I was not rejoicing in the birth of my daughter as much as others seem to be. How could I feel grief if my child was alive, and seemingly doing well?!

I think it took me about a month to get to the point where I felt any joy and, consequently, where I could whole heartedly say “thank you, she is doing well”. It was not until much later that I stumbled on an article (here) that put a name on this limbo state of emotions. They called it “ambiguous loss”, or a “loss that is not clearly defined or does not bring closure”. I think having a description of what I was feeling brought some sort of validity to it (see, I am not entirely insane). It makes sense after all. As a parent of a premature baby you do experience loss, even if your child thrives. I lost the last three months of my pregnancy. I lost the typical worries and joys of a new parent. Instead, I tried to make sense of medical terminology, tried to be an advocate for my child, and all the while even basic things like holding and feeding were done under watchful eyes of nurses. I lost something each day as the door of NICU closed behind me on my way home

The premature birth is traumatic event for everyone involved and parents are very much included. What I felt was normal. If you have a baby in NICU, give yourself a break on this one. It is OK to feel like you have lost something. And if you know someone that has a baby in NICU, be kind to them. The emotions that go along with NICU stay can be very confusing to the new parents. There are days that are bad and congratulations are hard to hear. There are days that you don’t want to talk about how it is going and you don’t want to think about what is to come next. Don’t judge and give them a break. Sit next to them. What they are feeling is OK. They are not being ungrateful. They are just very tired and very overwhelmed by the whole thing.

My daughter is going to be 4 in October. She is doing well. She is thriving and living up to her NICU “feisty” moniker. There are still days that I grieve the loss of the perfect pregnancy with her, but, especially on those days, I am very aware of how blessed we are that she came home.

Thanks, Natasha, for helping me realize I wasn't alone and that what I was feeling was 'normal'!


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