guilt of a preemie mom

all preemie parents- let's be real- moms deal with guilt. wren is just about 10 months old and i'm still overcome with it periodically. not only do i think about the possible hardships she could face in the future, but looking back i remember all that she's gone through.

in the beginning i felt guilty looking at my baby for the first time in a picture, when i was still too groggy to go visit her... hearing the updates from her daddy.. about how cute she was... and that she was needing help to breathe. then staring through that clear plastic at my baby.... nauseous from the surgery, the meds, and the warmth of the nicu... so sick that i couldn't stay next to her. and every time i left it was just as hard as that first time. blaming myself for what happened- what had we done? that poor baby... all the pain and trials she would face weighed on me. i took refuge in knowledge, learning everything i could about all things preemie. i kept up an emotional wall when i thought of her. she was my daughter, but the guilt and grief were too much... if i opened my heart and gave myself over to being her mommy i could be heartbroken.. things were so sketchy. the nicu is a roller coaster ride, two steps forward, one step back. i remember the first time i told her i loved her... i just sobbed and sobbed.... i sobbed because i hadn't said it sooner. i was dealing with so much self-loathing, so much stress, so much worry... and there was my heart, inside that isolette, and i couldn't even hold her when i wanted to. i felt blessed with every diaper i changed. and i hated that we didn't have her home. i hated that i couldn't keep her in my body- that i couldn't care for her longer! that i couldn't give her what she needed! i couldn't even take care of my baby inside, and that left me unable to care for her outside while she was stuck in the nicu. when i took her home i was constantly jealous of other termie moms. people who weren't dealing with monitors and oxygen, people who didn't have to worry about germs or physical therapy for their infants... they didn't have to worry about feeding issues or weight gain. they could just be a normal happy family.

if you have a baby in the nicu, or recently out of the nicu, or long-time out of the nice, if you had a termie with complications, or you had a perfectly healthy baby and complications yourself.... just know that what you're going through right now is totally normal. any time we have experiences outside of what we expect, our mind grieves a little... the loss of what was expected. whether we expected a natural water birth, a healthy baby, or something silly like a full term pregnancy... all of those are things that we have to adjust to not having.

it takes time. some issues take longer than others. as the baby's health stabilizes, the first time you're able to feed them, the first time they wear clothes, with every smile and sweet snuggle when you get them home.. with every milestone that that precious baby hits it will open up your heart a little more and make all the horrors of the nicu seem a little further away. now, with wren getting so big, and doing so much, my main worries (and therefore my guilt) rest in her developmental issues. will she have CP? will she have a learning disability of some sort? and those are things that we won't have an answer to for a few more years to come.

how to deal

  • make a sympathetic friend. they should have experience with the nicu, preemies, trauma in general, or be the most sensitive person you could imagine meeting. (most people without personal experience are bound to say the wrong thing. and even if, by chance, they don't say the wrong thing, you're likely to dismiss what they say because "they've never been there".) 
  • join a support group. this can be a message board, a group in your area- or at your nicu specifically. i can't stress enough the importance of talking to people who have been there... sharing your pains, asking your questions, venting about stupid nurses or a day full of desats.
  • rely on your spouse for support- but don't expect them to be in the same place emotionally. it is vitally important that you come together with your husband/wife during this time of hardship. (like any time of hardship, you will either come together, or be torn apart.) that said, my husband and i were consistently experiencing different emotions, requiring different things, processing information differently. he was extremely supportive- but mostly he was just putting up with my crazy. (i had to visit at least once- preferably twice per day. her bed had to be cute with matching blankets. she had to have little signs and pictures. i was crying all the time hating myself because i couldn't cook her longer- he was just going to work and doing his thing, dealing with the situation. as women, we're emotional... as men, they're fixers. there's a problem, they deal with it... they don't sit in a room and cry about it weeks later. usually.) so don't get angry when they think you're being nuts for buying a mobile that fits the nicu bed specifically... or they think one visit per day is enough. they love your little one too- they may just be handling it differently.
  • see a professional counselor... talk to a trusted spiritual advisor. this can do wonders. even moms i've known who were skeptical have been happy with the results of seeing someone. you have to make sure you see someone who is compassionate, aware of the situation, and that you click with. anyone that doesn't meet those requirements is just a waste of your time. (because you won't feel like you can open up- and that's the whole point- right?)
remember... many parents have been where you are... and they all felt the same way.


Little M and Baby G said...

I really feel that only a NICU parent knows what it is like to be a NICU parent.

And oh, the guilt. No matter how many times I tell myself that I had no control over how low my placenta attached, I still feel guilty.

Sonia, Gary and Lydia said...

It's hard to worry about developmental delays without other parents thinking I'm being paranoid. I really do dislike when people say, 'Kids develop at different paces.' Well, I think preemie parents, of all people, would know that! And if I didn't have a valid reason to worry, I would absolutely respect that I might be overly-anxious about it. Thanks for the post.

Michelle said...

Thak you for your blog! I was struggling to connect my feelings and I feel like you have so many of them right here!

Thank you!

My name is PJ. said...

This was very informative! It's hard to wrap your head around unless you've been in those shoes.

Jenny said...

I don't know what that's like but don't feel guilty if you can help it. Nobody gets an instruction manual in these situations. Sending you wishes of hugs and peace.