The List of Losses That Came With Having A Preemie

In case you have missed all the social media posts, November is Prematurity Awareness Month. This month, I’m going to attempt to write a handful of posts addressing topics that are not commonly thought about by non preemie parents.NICU Preemie

There is a great deal involved in having a preemie that I was unaware of until I found myself a preemie mother. For example, I was caught off guard when I found myself crying in front of my baby’s isolette mourning losses I had not considered.

I have addressed the losses that I am currently dealing with in a prior post. This post is a list of the losses that were immediate after Charlie’s early birth.

1) The loss of a perfect pregnancy. I know, no pregnancy is perfect. In fact, pregnancy can be out right miserable. However, I looked forward to participating in the discussions of how hard the third trimester is, detailing my weird cravings, and having funny stories about being huge. I had plans to bob in the pool all summer, to let my husband feel my baby kick in my enormous belly, and to observe my belly grow as the baseball season progressed. I had maternity clothes that I wanted to wear and pregnancy pictures that I wanted to take.

None of that happened. Instead, I was barely pregnant. For most of which, I was very sick. I had only begun to feel Charlie flutter in my belly before she was delivered. I never got to wear my maternity clothes nor take the pregnancy pictures. I think all of this particular loss is exacerbated by my knowing that I will never be pregnant again. None of these things will ever happen for me.

2) The loss of my delivery story. I had imagined my baby’s birthday from the moment I knew I was pregnant. I pictured the expression on my husband’s face when I notified him that my water had broken or that I had gone into labor. I had envisioned the hectic drive to the hospital through Northern Virginia traffic and wondered if we would make it in time. I visualized the actual delivery and joked with my husband about the big day. I daydreamed about the moment it would be over and my perfect baby would be placed on my chest to be held.

Again, these things did not occur. I was hospitalized ten days prior to Charlie’s birth. Twice, my husband had been summoned to the hospital. Each time, I asked if we were having our baby. The nurse responded by carefully choosing the vague words, “If it were my husband, I would want him here.” The second time that phrase was uttered, my husband met me in labor and delivery.

That morning, I had an emergency c section with general anesthesia. I missed my baby’s birth and as did Charlie’s dad. I did not get to see my baby until two days after her birth. It was two weeks before I was able to hold her.

3) The loss of celebration. When a baby is born, there is usually a great amount of celebration surrounding the event. After our baby was delivered at 26 weeks gestation, we hardly heard a peep. It was as if she was greeted into the world with stunned silence. Very few people sent gifts, visited, or acknowledged that we had a baby. It felt like people watched silently as she clung to life. I felt invisible as I was wheeled through the hospital lobby with empty arms when I was finally discharged. In all of the scenarios that played in my mind, I had never imagined leaving the hospital with out my baby.

4) The loss of the life that we had planned. We had picked out our new dwelling in Falls Church. I pictured riding the Metro to museums and the National Zoo. We were going to have meals with friends that lived near Metro stations. We had a life planned and we looked forward to that life.

Unfortunately, that life was impossible after Charlie’s early delivery. Now, Falls Church evokes feelings of dread each time we return to the hospital. Even if that weren’t true, the logistics of preemie life are impractical in the earlier version of life we had planned. We were forced to find a new way.

While I’m happy with our new life, I still elegiacally look at the places we were supposed to live, shop, and eat. I breathe out in an inaudible whisper to myself, “That’s where we were supposed to go” each time I pass them.

5) The loss of relationships. I have lost many relationships after Charlie’s birth. There are several reasons for this. For one, it changed how I view relationships in general. Unfortunately, some of the higher maintenance relationships are no longer worth it to me. Another reason, is that I have much less energy to invest in relationships. A third reason is that the trauma has created a vast disconnect in several relationships.

On the other hand, there are relationships that have been strengthened. I have also been surprised by a handful of people who have gone above and beyond their roles. I have not lost faith in humanity… just in some of my relationships.

6) The loss of choice. Due to Charlie’s early delivery, many things were taken out of my hands. The choices that other parents often agonize over (breast milk or formula, attachment parenting, etc) were made for me due to medical necessity. Regrettably, with the loss of choice comes a feeling of powerlessness. To me, it was a huge blow. I suppose that is why it continues to anger me when people feel the need to tell me what they think is best for me, best for my baby, or what I need.

I am sure that I will think of more losses while the topic is fresh in my mind. Preemie parents, what would you add to this list?

Happy Preemie

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

12 responses to “The List of Losses That Came With Having A Preemie

  • Heather L

    I often think about my loss of ignorance regarding prematurity. Now that I’m pregnant again, I’m somewhat mourning a “typical” pregnancy, considering all that I now know. There is no way I can relax and enjoy this pregnancy, considering what I have already experienced. As educated and aware that I am now, I often feel that “ignorance is bliss” feeling has been lost. There are little things (like not being pregnant at my baby shower and not having sent birth announcements and not having those adorable newborn photos) and then there are the big things…like loss of “innocence” in a sense, loss of former self, loss of confidence and sense of security, loss of relationships, etc. I constantly grieve the loss of a healthy start for Jack. And loss of CONTROL! That’s a big one. I have a word document saved somewhere with all kinds of thoughts on loss and grieving in regards to prematurity…guess I should dig it out. I read this somewhere and I think it describes our experience and the loss/trauma very well: “Can you imagine always feeling just a little bit broken… and that never really going away?”
    (http://www.laurencasper.com/2013/04/22/can-you-imagine/)

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    • woodra01

      There are countless losses. It seems like I encounter a new one each day. Since each one of our experiences is different, we also have differences in loses and the way we feel them. I forgot to mention the baby shower I didn’t have and the missing newborn photos. I have similar feelings about the loss of safety that I have written about in the post linked this article. The little bit broken post is beautiful. Well done!

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  • Amy

    I agree with everything you’ve posted. What I’ve been mourning a lot is the ability to take Rory everywhere with me/us. I have so much anxiety about protecting him from germs. My husband has a large family and we have several friends with young children. As we move toward the holidays, I’m acutely aware of all the fun events and gatherings we will miss. He deserves to be doted on and loved by our family and friends but keeping him healthy is most important.

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  • nikkstar

    The stupidest one that has me still mourning is the lack of announcement on Facebook. All my friends announce the arrivals on Facebook, covered with details and photos of happy parents in the background. I am still not really ‘out’ on Facebook about the difficulties we face as a family, choosing to share selective photos that show us in the best light.

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  • Nancy Brown

    My preemie was born 8 years ago at 1lb 11 oz. 25.3 days. These are great points! I will be back to read for sure. You do have a long road but you never know where it will go and where you will end up!

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  • Little Miss Moneybags

    All of these hit the spot for me! I would say that for me, one of the biggest losses was the loss of my innocence. I think I had always thought that if I worked hard and was nice, really bad things wouldn’t happen to me. Now I know that that isn’t true. I also remember realizing that despite our circumstances (25 weeker, emergency c due to placental abruption) we had a fairly easy road – our next door neighbor was the only surviving baby of triplets. Our hospital has such great outcomes for preemies, when I realized they actually couldn’t save everyone, I think my world just got a little darker.

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    • woodra01

      I agree. I thought my baby would be safe as long as I did everything right while pregnant. Not so much anymore.

      It rocked my world when it did not make sense to me which babies survived and which babies didn’t. Some babies that seemed strong would suddenly become critically ill. Other babies would miraculously defy the odds stacked against them. The whole thing conflicted with my previously understood order of the world and stole my sense of safety.

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  • Sandra

    Your blog is spot on. I just got introduced to it by a coworker and I’m subscribing. 🙂 That being said… I think the greatest loss for me was the loss of potentially having healthy pregnancies. My story was similar with the emergency c-section (the day before my baby shower, that I had planned early since I knew I was going to have a preemie). After my preemie, we tried again and had a baby with Spina Bifida. Two “special” babies… two scary pregnancies… and finding out that the issue was within me… changes your perspective. You are told not to blame yourself and then come to the stark realization that it WAS you. When people ask if I will have more I tell them “no, I count the blessings I have”… but inside, I think “no, who knows how bad that one will turn out and I just can’t go through it again”. Sad to say out loud to “regular” parents… just thoughts that preemie parents can I understand, I suppose.

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    • Becca

      Yep, that was one of the many purposes of starting this blog. Sometimes life stinks. I wanted to be able to convey my thoughts and feelings without being forced into optimism. I’ve been fortunate to have others (such as you) to share similar thoughts or perspectives. It helps me to understand our journey a little better.

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  • babylossmama

    Yes. I have lost all this, and my son as well. I’m still struggling with my anger and jealousy. As a previous commenter said, when you do everything right during pregnancy, you expect a “normal” outcome – and then you lose your innocence so quickly.

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