What it means to be a NICU mama…

For those who know me personally, you know that I’m a NICU mom. Most people hear NICU and assume you had a teeny, tiny baby who came way too early and that everything was fine except for having to wait a long time for your baby to come home. No, my daughter was not a preemie…she was full term. Actually, she was a few days past due (in my opinion, I think she was 2 weeks or so past due, but that’s a whole other story) and we went into the hospital to be monitored just 2 days before our scheduled induction. More on that later (or maybe even another time)…

Instead of focusing on what put us in the NICU, the reason I wanted to write this was so that others know what it means to me to be a NICU mom. A few months after my daughter was born, someone told me to stop identifying myself as a NICU mom and my baby as a NICU baby. Guess what? We always will be, and damn it, we earned that title. Unless you’ve had a child in the NICU, you really do not understand it at all. While great friends and family do a great job of attempting to understand and some of them work through the emotions with us, they’ll never truly get it. And that’s okay. The point of this is just for you to try and get a better understanding of what it means to me.

Being a NICU mom means “over reacting” to any cough, sneeze, illness or injury. You’ve managed to get your child home and you do NOT want to go back to that hospital. Your mind always goes to the worst scenario…even if your kid has a small tumble, you immediately flash forward to being admitted. Seriously. It’s not something I can easily change…it’s a constant fear. While it’s not as present as it used to be (my daughter is 3 now), it’s still there. People will say “don’t worry” or “stop over reacting” but it’s not that simple. It’s almost embedded in me, programmed if you will. Learn to let me go through those moments instead of judging me for them. Two days before our daughter’s 2nd Christmas (her 1st Christmas at home) her Pediatrician diagnosed her with really bad pneumonia and bronchitis…as soon as those words came out of her mouth, I burst into tears so afraid she would be admitted and we would spend another Christmas in a hospital. Rest assured, our wonderful Pediatrician had read her chart and knew what we had experienced, so she quickly reassured me that we would be spending Christmas at home.

Being a NICU mom means that in any moment, depending on what triggers it, I can immediately be transported back to the exact moment in the NICU…the scenario, the memory, the sounds, the smells…the emotions. While some of our stay in the NICU is a bit of a blur, so much of it is still incredibly vivid. I’ll never forget the moment I first was wheeled into the NICU to the scrubbing sink (where it was mandatory to set a timer and scrub your hands/arms/elbows until you could move any further) and trying to stand up to reach the sink…I was recovering from my emergency c-section just about 10 hours before, and I instantly started to cry. Crying while washing your hands? Yes. Because I knew I was about to see my sick, sick baby for the first time since her delivery (where I only saw her for maybe 2 seconds total). About 25 minutes after she was delivered, her Neonatologist approached my bedside and asked me and my husband to sign paperwork to intubate her. I remember him asking…I remember signing…and I remember I instantly starting shaking uncontrollably. He also said we couldn’t see her at the moment, but we could call the NICU and they’d tell us when we could come. The nurse monitoring me told us that we would be able to see her before they moved me to my post-partum room. 45 minutes later when I was about to be moved, we were told we still couldn’t see her. I couldn’t gather the words or courage to speak up and ask the dreaded question that I knew I was thinking, my husband was thinking…maybe even the nurse was thinking it. I honestly still can’t say it out loud…

Being a NICU mom means that I didn’t get the “movie” moment of having my baby placed onto my chest after delivery…nope. I have no photos of us during delivery…shit, my husband wasn’t even in the damn OR when she was pulled out of my tummy. I didn’t even get to try to labor because that’s how sick she was. People tell me I’m lucky I didn’t feel any contractions, but I don’t see it that way…I don’t have the cute newborn photo’s that most of my friends have because we were in the NICU. I don’t have her first baby blanket or hat because she was in a diaper, intubated in a little incubator where I could only stick a few fingers in a hole and stroke her little leg while watching her chest move up and down just a tiny bit by a machine, all while hearing a ton of beeps not knowing what was bad or good. I remember my husband coming back from seeing her for the first time (about 5 hours after she was delivered…I couldn’t get out of bed due to the surgery, so only he could go) and he brought in a little fabric type doll. The nurse gave it to him…it was for me to wear so that it would catch my scent after several hours and then it would be placed near her so she could smell me. They also put one near her…we would swap them so I could smell her and she could smell me. I still have them to this day…

Being a NICU mom means, more than likely, that you were discharged before your baby. No, I don’t have any of those cute going home photo’s either…instead, I was wheeled out to the car, sobbing the entire way because I was just told (after seeing my daughter) that she was given medication to paralyze her so they could work on getting her lungs stronger and I couldn’t go into her room because there were too many people in there. The nurse wheeling me down to the car gave me a huge hug and said “Don’t worry mama…she’ll be okay.” Again, sobbing. I don’t remember her name…she was one of my nurses for maybe 2 hours in the post-partum room but I’ll never forget her, what she looked like, how delicately she said that to me…You know what else? It’s absolute torture hearing the baby next door cry in the post-partum wing…what I would have done to have my baby in my room. Also torturous? Having to tell almost every new nurse that your baby was not a preemie, what happened to her, etc. Really? Leave me alone people and give me my pain meds.

Being a NICU mom means never, ever forgetting the first time you got to hold your baby (she was 4 days old). Or the phone call when they tell you she’s off the ventilator – because you know that means when you go in you’ll probably, hopefully, maybe get to hold her (so you bring your camera, just in case). I’ll never forget getting to change her diaper the first time or finally hear her cry…we seriously were the happiest people when we heard her cry.
We share things on social media, but there is one thing we have never shared…the first photo my husband took of our daughter, the first time he saw her in the NICU. When she was a little over a year old, we were discussing our time in the NICU and randomly that photo came up in discussion. He said to me “I’ve never told you this, but I took that photo because…well, because I didn’t know if you’d get to see her alive.” (Excuse me while I sob as I write this…) My husband was so strong the entire time we were going through all of this…never once did I see him be fearful. He was always strong, encouraging, such a support for me…He was always asking questions to the doctors and nurses and he never left my side (or hers)! When I heard him say that about the photo, I couldn’t do anything but cry. Cry because we finally said what we had always feared out loud, and also cry because I couldn’t be there for him the way he was for me. He must have had so many burdens on him during that time and I wish I would’ve tried harder to see that. I have that photo on my phone…I keep it because sometimes I need to look at it. Sometimes I don’t know why I need to look at it, but on the rare occasion I do, I’m glad it’s there. Only a few times have I shown it to people…people who are extremely close to me as we have discussed our NICU journey. I have only “published” the photo one time…in her 1st year Shutterfly baby book. Why? Because I want her to see how incredibly strong she is and what she was able to overcome. When she’s older, she can choose who to share it with and when, but my husband and I feel that it’s not our photo to share publicly with others on such a large scale like social media.

Being a NICU mom means that the idea of going through all of this with another baby terrifies me…like I want to puke just thinking of it. So, while I love my friends and family who tease me about having another, I don’t think any of them truly understand how paralyzing that thought is. I cannot go through all of that ever again…not that it would happen, but no one can promise me it won’t. Some people may think I’m being selfish, but the thought of going through 9 months of not knowing how the birth will be, or what will happen after, just makes my anxiety go through the roof. I don’t think I’d be able to enjoy it…and at the same time, I’m so grateful we got a happy ending with our NICU stay and I’m so obsessed with our daughter that I just can’t wrap the idea of another around my big head. Let it be okay that I may not want to have another baby…and try, just try to see things from my point of view. It’s not as easy as some people think because for me, it brings back so many terrifying moments of my life.

I love my girl…I’m so proud of her and of her journey. We didn’t know it when we chose her name, but closer to her delivery we looked it up and found out it means Life. How fitting, right? When we took the maternity hospital tour and walked past the hallway door leading to the NICU, we both thought “oh, how sad…” and kept going on the tour, not looking back. Little did we know that a few weeks after that, we would be going through that door…a lot. Buzzing to get in, showing our bracelets through the camera so they would unlock the door…turning the corner into a long hallway then through another set of big doors they would unlock for us. Heading to the big sink on the left to scrub up…walking past the nurses station all the way around to the last room in the corner…Room 5…I think it was room 5. Haha. Visiting with our nurses, talking with doctors…learning medical speak (or whatever we could grasp)…coming in the morning right after rounds so we could get updates from the Doctors…coming in at night before her bath so we could do her night time routine and read to her…taking two steps forward always followed by one step back…Spending her first Christmas there…My 30th birthday there…New Years Eve…taking it day by day.

So, that’s what it means to be a NICU mama to me…

the first time I held my sweet girl