Guilt, Part I- NICU parent guilt, a how-to

I should have felt parent guilt a long time ago. It was hinted at by side comments from people when they found out that I, a mother of two, was not a stay-at-home mom. Pitied looks. Side comments about how they grew up so fast, and didn't I want to cherish this time with them? And here I thought I was cherishing my time with them.

My dear friend had an MA and two (and now four) kids. She also got a pitied look from people when they asked what she was doing with her degree and she responded that she was a stay at home mom for her adorable boys. Wouldn't they be too sheltered? Wouldn't they like to be in a preschool environment?

Seems you can't win. There's plenty of reason to feel guilty.

Steve (my spouse) told me to tell those that asked that we'd talked about the work thing a lot, and we'd decided that since my girls enjoyed daycare and Steve enjoyed his job so much, we felt it was really best for family dynamics if he continue to be a working parent rather than a stay-at-home dad. "Why does it always have to be you they ask?" he said.  I love my partner.

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But NICU guilt is different. It's harder to brush off, harder to fight, harder to grasp.

Picture this: your baby is sick, maybe dying. Your children at home have had their world turned upside down - first by their mom being suddenly put on hospitalized bedrest, and then a few weeks later just as things settled down, by a rush back  in to the hospital in the middle of a mommy-daughter craft time. Now all of a sudden they have a baby brother, but they can't see him because he's too fragile. They're worried.

Things are so uncertain. You are sick with two forms of sepsis. (Er - if you're a guy, just pretend you're a woman here.) Your c-section scars mean you can't pick up your older children. [guilt] Your child in the NICU can't be touched because his paper-thin skin is so underdeveloped it would hurt him. His eyes are fused shut. You don't know why, but your body failed him. [guilt] He should still be in your womb, he should still be there for three to four more months.  But he's a week old and weak. You can't drive to the hospital on your own. [guilt] You can't take your older children with you. [more guilt] This means that you and your partner can't spend much time together. One of you is always with the children at home, the other at the hospital. 

You make things work for a while. Then work starts up again - for both of you. There's no choice. Your household depends on two incomes - or at least an income and a half - but going to half time means that you lose your paid maternity leave, that you have to pay it back. So you put your older kids on the school bus and trudge back in to work. You wait until after the girls have had the supper your spouse cooked before you head back in to the NICU. You spend your weekends there to make up for the missed weekdays.

You miss a surgery to stay at work. It seems odd in retrospect, but if it fails, you'll have to send your son to Detroit so they can reattach his retina. Hours away, and you'll have to go with him. You don't have enough time off for that. Your partner attends the surgery so that your son is not alone. You should both be there, but really, it's only his eyes. You couldn't do anything to help anyway. It's not like the last time, this is a minor surgery, he's not going to die. Just his vision.

NICU nurses explain to each other during shift change why you're not there - why neither of you are ever there during the day, except for the two hours twice a week that your husband can get in to be around when doctors round. [guilt.]

It's okay at first, your baby is still unaware of his world. The NICU nurses take good care of him, and you are banking your last three weeks of maternity leave for the day he's released.

But then he grows up in the NICU. He knows you - the sound of your voice and your smell. You're his mom, and you're one of his favorites. He is stable and wants to be held and played with. [guilt] He misses you when you're gone. [guilt] He has learned to cry. [heart-pang]

You want to spend every moment you can with him.

Four months in, with no end in sight, means your daughters miss you too. Your oldest starts screaming at the world more, your youngest goes back to bed wetting. [guilt] You rarely talk to your spouse any more. [guilt] You can't even have babysitters over without being embarrassed at the state of the house. Clothes no longer get folded, they're just washed, rifled through, worn wrinkled, and thrown back down the stairs in a heap to be washed. [guilt] Saturdays are mis-matched sock days. Dishes are never done except for pump supplies which seem to take two hours a day to wash. You wonder why you never purchased a dishwasher.

You're failing at this parent thing. There's so much guilt.

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No one told me about NICU guilt. It's hard to manage, hard to have it not consume you. But you can take steps to ease things

How do you fix NICU guilt?

You probably can't. But here are my tips for helping make it a bit easier:

1. Accept a C+ job as good enough. As parents we want to be perfect. When a child is hospitalized, you can't. Perfect is out of the question, so accept good-enough.

I learned this from a wise friend years before our JAM session began. She and her husband were both in grad school getting their PhDs. They were writing dissertations, teaching college courses, homeschooling their ten year old, taking him to swim practice, and had another baby on the way.  By my count they had at least three full-time jobs.

"How do you do it?" I asked her.

"I do a B+ job on everything, and an A+ job on one thing. Each week that one thing changes." 

THIS was the most impressive and refreshing piece of parenting advice I'd ever heard. She went on to say that sometimes she focused on being an amazing home school parent. Other times on getting the kitchen REALLY clean, and other times she sent her son off to his room with a book, ignored the dishes, and spent the day writing her dissertation. She learned to focus. 

As a NICU parent, don't go for B+. Accept C+ in nearly everything. You're going for survive, not thrive. Throw a load of much-needed underwear in the washer, and call it a day. Don't even bother folding.

2. Acknowledge that this isn't forever. I don't know why, but that helps. Eventually your child will be home, there will be no more NICUs. For now, you're growing deep roots. Don't expect fruit. 

3. Outsource & accept help. In economics they talk about comparitive advantage. YES, you as a parent might be the best person to take your older kids to the park, AND you're also the best person to be at your son's bedside in the NICU. But you can't do both. Someone else can (and is very willing to) take your kids to the park, and they'll only be marginally less good at it than you. (Sometimes, if it's a favorite aunt, they'll actually probably be better at it than you.) Thus, outsource. Let other people bring you meals or watch your other kids. Accept as much help as you can. Free you up to be the mom or dad you need to be for your NICU baby.

4. Focus. This is the hardest bit, but it's also the most helpful. I know so many parents that get consumed by NICU guilt. When they're in the NICU they worry about their kids at home. When they're at home, they worry about their NICU baby. When they're at work, they're really not there at all -- they're just trying to get their head on because life is so fragmented. Their head is always in three spots, sometimes more, always feeling the pressures of the other places.

This all goes back to point one. Know that you will get a chance to be with your baby or your at-home children or at work each day, and spend your time focusing on where you are that moment. If you're with your kids, invest in them. If you're at work, make a check list and work through it. If you're in the NICU, rest in the knowledge that (presumably) someone else has things covered at home/work, and let your attention be focused on your sick child.

5. Create a schedule. This really helps with number four. It was so much easier for me to be at work or with my girls if I knew that there was another time that I'd be at the NICU. My partner and I made a commitment to have one of us parents be at the NICU every day for some amount of time. In the 150 days we were there, we only broke this commitment twice, when we were both too sick to enter the NICU. That's not too bad.

If you're a single parent, get a dear friend or grandparent to help with the NICU duties so that on occasion you can have a night-off. The road is long and occasionally you'll either get sick or just worn, and you'll find yourself having to stay home. Knowing that your baby still is being seen by a care giver will help you rest away from the NICU. (Most NICUs have a program or training an alternate caregiver must go through to be allowed access to the NICU, check with your NICU social worker or the front desk).

If you are living far from the NICU, also make a schedule. It may be a weekly rotation of responsibilities instead of a daily dip into each area, but, again, knowing you're not "abandoning" your baby in the NICU or "neglecting" your family at home (horrible words - strike them from your vocabulary!) will help you be okay with feeling split between two places.

Wow. Doesn't that look marvelous?  Isn't it amazing how easily I've lined up just exactly how to survive NICU guilt?  This woman had it all together!

...

Except I didn't. I don't. It's not that easy. I promise this - if you are a new NICU parent reading this, your heart will be pulled in hundreds of directions and it will hurt, no matter how much you plan to make it work. Maybe this advice will help a little. Maybe not. Know this, though - you're not alone, and you are okay. It will get better.

Hang in there.

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Parents of Preemies / Hospitalized Children -- Please help! Share below what things helped YOU stay sane in the NICU / PICU / hospital. Feel free to link back to your blog.

Coming up - Part two: Survivor Guilt