Being a NICU Mom

I've been debating whether to write this post for a while now, unsure if I really want people to know these things, but then I read an article recently that made this statement: "feelings are just feelings. They're neither good or bad. They're nothing to be ashamed of or to hide. It's how you deal with them that makes the difference." Everyone feels angry, happy, sad, excited, envy, etc. It's how you control your reaction to these emotions - your temper outbursts, your emotional teary breakdowns, your shouts of joy - that matters. So here's my calm, rational explanation of the emotions behind being a NICU mom...and the comments that people feel the need to share.

Becoming a mom for the first time is an emotional roller coaster to start with - you're dealing with hormone levels you've never experienced; you're dealing with the fact that you have no control over your body anymore because you're sharing it with someone who doesn't know how to share yet; you're dealing with morning sickness and stretch marks and soreness and aches and pains you didn't know were possible; and you're doing all this for nine months on less sleep than you've probably ever gotten before. Somehow, when they put your baby in your arms for the first time, that overwhelming sense of calm and peace and love and joy erases every bit of it. But when you don't get to see your baby until four days later, when you don't get to feel them in your arms outside of your stomach, when you don't get to look deep into their sleepy eyes and know for yourself that they are ok - it sticks around. It doesn't all go away. Not only does all of that not go away, you add to it.

You add stress. Sure, there's lots of stress with bringing any baby home from the hospital. The stress of leaving your baby in the hospital is beyond imagination. Somehow, you're supposed to keep going. Somehow you're supposed to get out of bed. Somehow you're supposed to carry out the plans you made for nine months, despite that fact that NOTHING is the same. There's something HUGE missing from that plan. You add the stress of a million questions from everyone around you who has been waiting with you for your little bundle of joy to appear.

You add worry. What if something happens while I'm not there? How fast can I get there is something goes wrong? What if it's something really wrong and I don't make it in time? What am I supposed to tell sisters? Do I plaster a smile on and say "she's doing great!" Or do I tell them how I broke down and cried (again) when the doctor said she needs surgery (again)? 

You add disappointment. I didn't get to see her first smile. I didn't get to hold her as she went to sleep the first night. I didn't get to change her first diaper or give her her first bath. I didn't get to put her in the cute outfits people bought for her because they aren't practical for the hospital, and now she's outgrown them. She wasn't at home with us for her first Christmas - instead I spent the day alone with her at the hospital while dad tried to keep the day as normal as possible for sisters. The only newborn pictures we have of her were snapped on phones and have wires and tubes and IVs and hideous yellow surgical gowns in them. She wasn't with us for her first New Year or Valentine's Day or spring break or Easter. The disappointment of discharge getting delayed because she gets a cough, or her weight dips, or some other small, insignificant thing that can actually indicate a huge issue.

You add anger. Anger at genetics and "chance" and disease and sickness. Anger at doctors when they can't give you answers...and sometimes when they can. You add anger at the people who make comments about how "lucky" you are that you didn't have to go through the sleepless nights of being awake with a fussy newborn. Or how "unfair" it is that you don't have to worry about spit up. Or how "nice" it must be to not have a baby screaming and crying all the time. Anger at the people who make your baby's issues about them and how it effects their life - and then get mad when you don't care about that at all.

You add guilt. Mostly because you had one job: keep her safe for nine months - but there is nothing you can do to protect them from genetics. Guilt because you can't stay there 24 hours a day because there are other people who need you to. Guilt because you miss class parties and field trips for tests and surgeries. Guilt because you don't want to tell sisters everything that's going on, so you tell them half-truths or nothing at all. Guilt because you can't be everywhere for everyone like you need to be. Guilt because you have to walk away from a job that you love and try to think of every way possible to get out of it. Guilt when you have to put her back in her hospital crib and walk away for the day. Guilt because you can't be truly happy for the babies who get to go home because you're still sitting here.

You add frustration. When you're so close to the end, and something else pops up. Frustration that she's not getting better fast enough for the doctors and their charts. Frustration when there are no answers for what's going on because they've never seen anything like this happen before. Frustration with the lack of information about what to expect because everyone with this condition is so different. Frustration at systems and red tape and policies. Frustration with insurance and billing departments who are only open during the time that you are the busiest and not at all concerned about returning their call. Frustration with the days you are frustrated and don't know why. 

You add immense sadness. For everything that you've missed out on. For everything that your baby is going through. Because you can't take their place. Because you know they really need to get that IV in, despite the fact that they haven't been able to keep a vein open. Because your baby's heels look like pin cushions from all of the lab work. Because you have this huge hole in your heart when you're away from the hospital. Because on holidays you can't dwell on the fact that part of your family is missing without bringing everyone else down in misery with you.

You add helplessness. Because your baby looks at you with big huge tears in their eyes and there's nothing you can do. Because the most you can do on some days is pat their hand so that you don't dislodge any wires or tubes. 

You add heartache. Even though I'm "lucky" enough to have a baby sleeping through the night, she sleeping somewhere else. And just because she's sleeping doesn't mean I am. And every time I wake up and see the empty pack-n-play where she should be, it hurts more than you can imagine. Even though it's "unfair" that I don't have to deal with spit up, I would give anything to not have had to put my baby through a surgery that stops anything from coming up because she is unable to get anything down to start with. I would trade everything I have to not put her through the pain that it will cause when she gets ready to eat solids, or when she has an upset stomach and can't get the simple relief that comes with throwing up. And sure it's "nice" to not have a screaming, crying baby but that also means that I don't have a cooing, laughing baby either.

When a "good day" is characterized by the alarms only going off once or twice and no changes being made to her care orders. When you have a moment of panic walking around the corner to see anyone standing near her bed because something might be wrong. When you feel bad for wanting them to move the little one in the next bed because you can't stand the sound of their pain for one more day. When the family next to you starts saying they're so ready to go home and they've only been here for a few days. When you wake up in the morning and hope that it's still December and all of this has just been a realllllllly long bad dream - and then feel that twinge of pain with the reality that this is your life now. 

The next time you meet a NICU mom just give her a hug. That's what she needs most. For someone to hold her. If you're close to her, let her cry. Let her rant and rave and then say a prayer for her. Don't say it'll be ok - because you can't promise that. Don't say you can't imagine what she's going through - because you really can't. 

Feelings are just feelings. They're neither good or bad. They're nothing to be ashamed of or to hide. It's how you deal with them that makes the difference.