**Disclaimer - if you are wanting to read a fun post about Addie, you won't hurt my feelings if you want to skip this one. This one is mostly for my NICU mom friends - past, future, and present - and for friends of other moms in the NICU now or in the future.
Let me be clear, I'm not sharing this story for sympathy's sake or for a pat on the back or for any reason other than I feel a responsibility to share some insight into my re-wired emotional landscape and that I hope it helps someone else extend a little extra grace to a friend in the future. I have been incredibly hesitant to share this post because it is very personal, a little embarrassing to discuss, and I am afraid that it may change how others perceive me. That being said, as a NICU survivor, I believe that I have a very real responsibility to share both the good and the bad in our lives. Our life is amazing, but you don't survive something like 166 days in the NICU without some residual baggage. Until Addie, I didn't know anyone with a micro preemie, and I only knew a handful of friends with babies born between 34 and 40 weeks. Very few people know parents of micro preemies, so when they are thrown into that world there is a very real sense of being completely alone. I want to be a resource for those parents and also for their friends, and I am honored to offer any insight that I can. For now, I will share a glimpse into one of the more difficult and unexpected emotional responses that comes after a traumatic birth experience. It is more difficult in that it can impact friendships and relationships short or long term. The birth of a new baby is something that you expect your friends to be present for. ..but for me at least, it is one of the most difficult things in the world to face.**
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Living in the present. ..sounds so simple but it is so.hard. to do in our world today. In general, we are always looking to tomorrow - what's next, how soon until I can (drive, date, go to college, get a real job, buy a house, get married, have babies, pay off my car, sell my house, get a new job, etc, etc) - or living in the past - why did I do that, what was I thinking, I can't believe I dated so-and-so, remember when life was easy. Living in the present is hard, but I'm trying to do a better job of focusing on today because I'm learning that tomorrow will be here all too soon, especially now that I'm a mommy. Addie is growing like a weed and absolutely thriving. We are beyond blessed!! She is practically walking on her own - a few steps here and there - and is starting to chatter more as she crawls through the house. My house and my heart are full and warm these days. I'm trying so hard to savor the moments, not stress the small stuff, and generally freeze time because somehow in the exhaustion of the last 23 months, my tiny, pound and a half baby has grown into a beautiful little girl. I swear it happened when I wasn't looking, but then, I rarely take my eyes off of her (she's a whirlwind these days!) so I'm not sure when it actually happened.
Another reason that I'm focusing on the now and not the future or the past is that the future is still uncertain (Will she catch up? Will she ever be out of therapy?? Will she really learn to eat and get rid of her Gtube??? Will her quality of life be what we dream it will be for her?) and the past is still tender. My focus tonight is on the past since I ran square into it recently. I finally went on a journey (not really a journey - it's less than 10 minutes from my house - but it felt like a journey back in time in some ways) I knew was inevitable, and in some ways it went better than expected and in other ways I fell apart like I feared.
I can't speak for other NICU moms, but for me, I have walked and driven by the hospital where I was initially admitted for pre-term labor with a stubborn refusal to really acknowledge its towering stare on me as I passed by, all while carefully watching it out of the corner of my eye (as if a hospital can reach out and "get" me. ..I'm not saying any of this makes sense). I had never been in this particular hospital before the night we went there to try to stop my labor, and as a result, that's all I associate with that building. I had walked through the sliding doors, into the beautifully appointed lobby, found the right set of elevators and travelled up to the 2nd floor. ..and I left in an ambulance bound for Fort Sanders where there were doctors who thought they may be able to help if they could get me there fast enough. It sounds so bizarre. ..but that building embodies every emotion that I feel when I allow myself to go back to May 10, 2011. It stands as a monument to the day my life fell apart and any shred of innocence was lost. As you can imagine, I haven't been in a hurry to go back. I can't even look at the building. ..walking into it can't possibly go well.
I have not only avoided the hospital, but, like many preemie moms, I'm incredibly skittish about visiting new babies and their families in the hospital. It's not their fault, and I want to be clear that I never, EVER begrudge anyone their term, healthy delivery. I promise. I really don't. I'm more thrilled than the average mom every time my friends and their friends and their friends friends reach viability and later deliver a healthy, term baby because I know now that there are no guarantees. I'm on pins and needles more than most until I hear that baby is here, happy and healthy because I know from months in the NICU what can happen even with term babies. I don't wish this journey on anyone and certainly not my dear friends. So, I wait anxiously until I hear that mom and baby are both doing really well, and then I breathe a sigh of relief. This is the best part for me. They're healthy and safe. They won't ever know how truly fortunate they truly are, and I'm so thankful for that.
While I am incredibly thrilled for those families, my heart aches a little, remembering the dreams I had for our growing family. So, out of self preservation (and a healthy dose of fear), I haven't been to visit any newborns in the hospital. I had never had that experience before Addie, and having it after just sounds like I'm putting myself in a very dangerous situation emotionally. I want to celebrate with my friends, and I am incredibly happy. ..but I was afraid I may not seem very celebratory or happy if I went to visit at the hospital. I am ok once they are home, but putting myself in the delivery room after baby has arrived just has been more than I could face. So - to my friends that I haven't visited. ..now you know why. I love you all the same, but I just couldn't do it. To see the warmer actually filled with a baby and not staring ominously at me, threatening to rip my not yet viable baby from my womb. ..and the balloons and happy flowers and friends and family passing perfectly healthy baby around (where IS the hand sanitizer?!). ..not seeing it first hand was my last line of defense. I didn't want to see what I had missed out on, and I was afraid it would make that ache in my heart even bigger.
That brings me to recent events, when a very dear friend had her baby. At that hospital, of course. I needed to go visit.. .I can't explain it, but I just had to go to show my support and love for this tiny new person. It seemed important that I not wait until she went home. So, exactly 23 months from the date I went into pre-term labor (seriously, to the day.. what are the odds?!), I walked back through those sliding doors, through the lobby, up the elevators and stood at the same desk where a scared 29 year old girl tearfully stuttered that she was there to meet the doctor on call because she thought something was wrong with her baby. ..and yes, she was just 22 weeks along. Ironic, isn't it, that not only did I face my fear of the hospital, but I went along that exact same path at roughly the very hour I went the last time. I'm not going to lie, my head was a little spinny at this point, but I powered through chanting "focus, just focus, this is NOT a big deal" and I frantically tried to find my friend's room so I didn't see anything else that was too familiar. Whew. I'm exhausted all over again. I found her room, and we had a lovely visit! Since I had never been in one of their delivery rooms, I could forget where I was. The new mommy was as beautiful as ever, and baby was beyond precious! For the first time in my life, I got to hold a newborn. It was the newest baby I have ever held, including my own. ..and I just wanted to stare. Pure perfection. Absolutely amazing little nose, eyes and lips - and that hair! Let me also be clear, Addie was the most beautiful baby I have ever seen, so I am in no way down playing her perfection here. I just hadn't been able to hold this newness so close and take it all in before. The visit was a success, and I am so incredibly glad I went.
A funny thing happened on my way out. Once I got back to the desk where I checked in not so many months ago, and as the elevator reached the lobby, it was all I could do not to sprint out. On one hand, I kept thinking, "So this is what it's like to actually walk out of here. .." and on the other, I kept telling myself to stop overreacting and forget it. Think about something else. All the while, my eyes kept darting around like something or someone was going to get me. As I walked back to the car in the warm spring air, I started to feel cold and clammy and my mouth went dry. ..my hands were shaking and the tears started. I remember trying to become smaller, hands clasped and then wrapped around my body. I know the men I passed walking up towards the hospital must have thought something tragic had happened in that building. They were right, but it happened nearly 2 years ago. Back in the car, I couldn't move. I couldn't leave. I just sat there, gasping, crying, not even thinking really. I saw a duck family waddle through the parking lot - weird, I know, but I remember thinking I would remember that detail. It made me laugh a little and helped me start working out of my funk. I laughed again, this time because of the irony, thinking that on this day that had started off with such a huge milestone - Addie's first zoo play date - would be tinged by the ache this building brought back. This is when Addie and our present pulled me back. Forget the irony. How can I be so devastated when we went to the zoo WITH Addie - and she did so incredibly well! Twenty three months ago, we didn't know if we would get a moment with her. ..let alone 23 months and a trip to the zoo! Yes, this building holds terrible memories. Yes, going to visit newborns in the hospital will still be a true labor of love for me. Yes, the events of Addie's first year of life were incredibly traumatic, and I have learned that moving past those things doesn't happen overnight. But the BandAid has been ripped off. Another step towards reclaiming my life has been taken. I discovered a new weapon when the world starts to close in. ..the present. Live.In.The.Present. Even while thinking that, I know that not every NICU parents comes home with a baby or has the successes we have had.. .I have seen both first hand, and I know how blessed we are. Some parents never even make it to the NICU.. I know how excruciatingly hard our experience has been, but I also know that many parents have faced far worse. So, living in the present brings me full circle to how I spend 99.9% of my days - Simply Thankful.
I'm sharing this so that when a friend, a sister, an acquaintance has a moment where the past comes leaping into the present or if they avoid certain situations, you can be understanding and kind. Even if it seems like it should have been long enough for someone to move on from a traumatic event, that individual may have just relived the entire experience just last night or earlier today. Different people respond to different triggers, and there's no way to know what may do it for an individual. Some NICU parents are taken back in time by beeps or alarms that are the same pitch as the alarms in the NICU. For others, it's going by the Children's Hospital. Some of us are aware of some of our triggers (for me, it was that hospital, delivery rooms and my OB's office) and some triggers catch you off guard (One night I woke up to the rhythm of Addie's breathing and the sound of the humidifier and for some reason it took me back to the days of sleeping at the Fort, when listening to her on the heart rate monitor was the only way I could halfway sleep. It was such a real moment, but thankfully I somehow managed to quietly cry myself back to sleep.). It's all still very, very real and surprisingly close to the surface. Time absolutely helps heal wounds, but scars remain. I know I would have a hard time relating to someone in my situation before I lived it. ..so I'm sharing to give you a glimpse into a world that someone else may have a hard time explaining.
Let me close by saying that there are resources available for NICU parents, both in the hospital and after discharge. PTSD is incredibly common in both men and women following a NICU stay. The longer the hospitalization, the more likely one or both parents are likely to experience symptoms of PTSD. I never saw anyone to talk through my experiences or my reactions / emotions during or following my hospitalization and our NICU stay, so I am not saying that I have experienced PTSD. I do know from what I have read about it that I have had some of the symptoms and experiences commonly associated with it, and now that I'm on the other side of it, I probably should have sought some help along the way. NICU parents are at a disadvantage because they have a medically fragile child at home, and it seems impossible to find time to do something for yourself when you're in the thick of it. That being said, if you or someone you know has been through a similar experience, please be aware that there are resources available to help if you will just reach out. Even if it's not actually PTSD, dealing with a traumatic birth and subsequent hospitalization is mentally and emotionally taxing, and in retrospect, I think both parents and child(ren) can benefit from some form of counseling along the way. I know that may not always be an option, but at the very least join an online support group, find others who have been through similar situations, and never, ever stop talking to someone (anyone!), whether that be your mom, your best friend, your spouse, or your NICU family.
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