Whether you are a new tubie mom or a mom with many moons under your belt, I think we can all attest to the fact that tubie life IS HARD.
It’s hard not only for the many reasons that can lead to our babies having a tube (e.g. countless uncertainties and diagnoses, numerous hospital/doctor visits, food aversions, weekly therapy appointments, etc.), it’s hard because it isn’t what we thought motherhood was going to be.
None of our daily routines look like what we envisioned and it’s frustrating beyond words some days. Gagging, vomiting, severe food aversions, are all a reality for many of us and it’s mentally and physically exhausting.
My little L had her gtube placed while in the NICU and we were nervous but we were so excited to finally have our babygirl home.
My tired exhausted self enjoying some snuggle time.
To say it was a learning curve is an understatement. Unbeknownst to me, this was going to be one of the hardest journeys second to the NICU.
My husband and I were exhausted from the regimented feeding schedule and all the processes that accompanied tubie life. Clamp, meds, unclamp, flush, clamp, beep beep, clamp… repeat. Sound familiar?
Not to mention I was pumping around the clock and dealing with wretched clogged milk ducts every single day.
And….. our L vomited A LOT. We were told to keep offering her the bottle, and if your babe was anything like ours, it was a struggle each time.
Precisely how we all felt about feeding time.
We would not only pour our energy to do all the tricks to get her to eat but we also poured our hearts and hopes, only to be disappointed 95% of the time. She never drank more than 30ml at one feed and this was rare.
But then, she’d puke that up more than half of the time.
L’s first time drinking 1/2oz for us. Yes, she did puke it up shortly after…
I was exhausted and overwhelmed.
I remember crying in disappointment, not in her, but in me. Why can’t my girl eat? What am I doing wrong? Why is she puking all the time?
Then I remember crying in anger. This can’t be a good life for her! Why is this happening to us?? Why is she puking?! Why won’t she just eat??! Why can’t the doctors or therapists help us!?
Then after hours of researching, I would feel encouraged to find a solution. If only I did x, y, z, then that’ll fix everything.
Only to find that it wasn’t… again, my hopes were crushed and I felt discouraged many days.
As you can see, motherhood for me wasn’t the joyous time everyone protested it to be. Don’t get me wrong, I love my girl more than anything but I felt so angry all the time.
Until, I did this.
I was in one of my lows with tubie life. L must have puked 5-6 times that day and I was exhausted from cleaning up vomit and smelling like it. I was tired of being house ridden because we were afraid of the pukery in the car or in public.
L with her infamous puke bucket
After my boo hoo cry, I remember thinking, this isn’t a good life for ANY OF US. I was so stressed out, my marriage was on the rocks, and I knew my girl could feel it.
Then it hit me. I don’t want my L to grow up thinking all she is worth is whether she can eat or not. So I had to stop focusing so much on that. Read that again.
There is so much more to L than her ability to eat. She was cooing, smiling, shaking toys. She had come so far from her little 1lb 10oz self. But if I wanted her to grow up knowing how amazing she was/is, then it had to start with me.
I had to make the shift from “Did she eat? How much? Did she puke? Oh nooo!! Dangit! How was she positioned? What is wrong now?” to
“Oh, she tried some! Cool.”
“As long as her food experience is positive.”
“Look at everything else she is learning.”
“She’s alive, I’m alive.”
“So what if she has a tube all her life? She’ll be quirky as all hell.”
I want L to have a healthy relationship with food. Not a stressful one. So again, this has to start with me.
Once I made this shift in my thinking, it was life changing. It wasn’t an immediate 180 but I felt so much more peace. Feedings weren’t as stressful anymore. There wasn’t this undue pressure 6-7 times a day. I was more able to enjoy motherhood and my marriage again.
And, coincidentally or not, she started to drink more or at least allow things in and around her mouth without gagging and puking.
Even as a licensed therapist I struggled with tubie life… it took me 6+ months to get to this place and I needed this perspective change.
This isn’t to say I gave up trying to find out the source of her vomiting or inability to eat, but there wasn’t this pressure to figure it all out right then and there.
There were still moments of disappointment and frustration but they became less intense and less frequent with time and practice.
This was a new way of thinking and like any other skill, I had to keep practicing to become better at it..for it to become second nature.
Your brain is like a muscle, and the way you think is a skill. Learning something new will take time and practice for you to be good at it.
So allow yourself some grace as you learn a new way of thinking. Allow yourself to feel what you feel but gently nudge yourself to think differently, to believe differently as you’d like a best friend to do for you when you’re upset about something.
I know for damn sure it isn’t easy. But you’re not alone mamas. Whether it is a gtube, CP, trach, mobility issue, speech issue, whatever the struggle is, we all struggle and it’s a process of grieving. So many of us out there struggle with this very thing, though our plates may look different, we still feel the weight.
So, please feel free to comment about your tubie (or special needs) mama journey and your own experience with the ‘shift’. It may just be the one thing another mama needs to hear.
NBC’s hit show, This Is Us, has captured many hearts since its debut in September 2016. Recently, this show has aired an episode where Kate has a preemie at 28 weeks gestation, and it has had created an uproar amongst the preemie community all across the world.
Some moms have stated, “I was crying so hard…it hit too close to home”, and others have blatantly said they “can’t bring themselves to watch it”.
Moms who have had preemies all experience trauma. Their birthing stories are far from the normal sweet moments we all envision after becoming pregnant. Many moms are hospitalized days or weeks prior to try and prolong pregnancy through the use of medications and medical interventions. Others are whisked into emergency surgeries due to life threatening complications such as HELPP or placenta previa. All of these moms are frightened down to their bones that their baby may die or live with life threatening or altering conditions.
If the birth was not traumatic enough, the aftermath may even be worse. Typically, these preemie families spend months in the Neotnatal Intensive Care Unit (NICU) afterwards as their baby learns to do the most basic functions, such as breathing, eating, and keeping their heart rate going.
Here, these families are greeted with so many heavy emotions, fear, panic, worry, guilt, exhaustion, confusion, sadness, helplessness. The list goes on and so does the time in the NICU.
Many preemie moms share that even after their discharge from the NICU, they are scathed for life. The trauma continues. Often, these preemie babies do suffer from lifelong conditions (eg cerebral palsy, genetic abnormalities, feeding disorders, etc) that lead to a life of special needs no mom ever imagined.
When Kate’s water ruptured spontaneously, my heart immediately sank. First, I feared the worst, but then, I felt this weird jealousy. I KNOW, RIGHT? It was as if I was like, “yeah, no way… she will probably carry to term. Lucky her.” Now, don’t get me wrong. Never, EVER, do I wish the NICU upon anyone. But for a fleeting moment, some of my darker emotions from the early NICU days came over me.
Then, Kate and her husband, Toby, meet their baby in the NICU and the tears flow. They flow hard. My instant reaction was to shut it off but I forced myself to watch it. I didn’t want to avoid my fears. So, I grabbed my tissues and sobbed along.
NBC / Rob Batzdorff
NBC did a wonderful job capturing all the nuances of the NICU, the beeping, the wires, and most importantly, the baby. It all looked so real.
I don’t know about you, but I empathize so hard when I watch This Is Us. It gives me all the feels, and this episode was no exception. All of my emotions came rushing back, the sadness, the fear, the worry, the despair…all of it. I was scared for Kate and Toby. Not just for the immediate situation, but what was to come.
I just kept repeating, “Oh my god…he is so small…. he is so tiny”
It made me realize how small my L was, but I never “knew” it. Of course I knew how much she weighed and saw her every single day, but it never truly registered until that night. It seriously made me think about how numb I was in our NICU days.
My post-show reactions are conflicting. I hate that it was so hard for me to watch it. But, I love what this episode has done for everyone else.
My sweet L (26 weeker) at just a couple of weeks old
It has given us preemie moms a voice. It has shown the world (the millions of viewers at least) a glimpse of our reality. Of course, I have yet to see what is to come on the upcoming episodes, but I am inclined to think that it will increase the awareness of our journey and let non-NICU families “feel” and understand our world a little better. And, hopefully it will bring to light the importance of mental health during a medical trauma that many have been unaware of up until now.
Unfortunately, moms of preemies, including myself, will likely continue to be triggered through the upcoming episodes. I know I have cringed a little at the thought of the next episode but I am also excited to join Kate’s journey (if you can’t tell already, I’m the type to get real involved in shows 🙂 ).
NICU PTSD is real. Certain sights, smells, noises, and situations can trigger strong emotions, and even make functioning difficult for some. But, I’m here to tell you that it shows up in all degrees. It isn’t always the clinical PTSD we are familiar of when we think of combat veterans. It is in the mom who cries and trembles after a they watch a television show of a NICU. It is in the mom who spends countless hours taking care of her special needs child every day but then falls apart at night when she finally gets a moment to break down.
I don’t say this to scare or diagnose. Actually, quite the opposite. I say this to validate our experiences as preemie moms. And, to know that regardless of the degree of PTSD some of us walk around with, you are not broken. You are living through a very traumatic experience. You are not crazy. You are not alone. You are most definitely not a problem to be fixed, but rather healed.
These recent episodes have helped me to see that I, too, have some degree of PTSD from our NICU journey, and that is OK. It is OK to not be OK, and I will be OK.
It is my hope that these new episodes will nudge some moms out there to seek professional counseling to work through their experiences. I cannot stress enough how vital it has been for me to heal through counseling.
And for those who are already working through their experiences, I hope this helps them to feel validated and just a bit more desensitized to the trauma so that each show day gets just a little easier to bear.
I would love to hear how this episode has been for you. NICU mom or not. All experiences welcome. Leave a comment below!
Me and my girl when she was about 2 months old (35 weeks)
Everyone knows that new moms or already-moms-with-new-babies are going through an adjustment bringing a new human being into their homes. People also know that there are a lot of hormonal changes going on and all fear the dreaded postpartum yuck (postpartum depression and anxiety).
But what many people don’t talk about is what moms of babies in the NICU go through. My daughter was born at 26 weeks gestation and lived in the NICU for 148 days. As a new mom and a mental health counselor by profession, I am here to share with you a piece of my personal journey and how I dealt with it.
Disclaimer: This post is for informational purposes only and should not be taken as professional advice. Please consult a professional or use this information at your own risk. View full disclaimer.
5 Emotions I Experienced in the NICU and How I dealt with it
1. Nothing
You read right. Nothing. For the first several days, I felt nothing. I was numb. When people asked me about Lucy, I rattled off facts about her weight, oxygen needs, and any other medical condition I was told. I became a reporter. I did not feel like a mom because on some strange level, she didn’t feel like mine. Yes–the sign said she was, and the medical staff referred to me as mom, but I just did not feel like one.
I was only able to see her 1-3 hours a day, and even then, a lot of the times I was just looking through a clear plastic box at her sleeping. It wasn’t the picturesque new-mom stuff you envision when you first find out you are pregnant. So, naturally, I felt detached from her because I was in so many ways. I felt robbed of the physical and emotional bonding that would have happened if I had a normal birthing experience.
On some level, this was my brain’s way of protecting me from the very real potential of losing her. So I had to keep from loving too much because it would just hurt too much. In general, this protective mechanism is a very important tool our brain utilizes to keep us from painful situations–a fundamental way that keeps us going.
How I dealt with it. First of all, I never faulted myself for feeling the way I did. When I realized I was “detached”, I asked other NICU moms if they felt the same. The responses were astounding. I wasn’t alone. They validated all the things I thought and felt, and reassured me that things would change on its own time. I did, however, make sure to do what felt comfortable for me at that moment. This meant, going for one hour some days because that was all I was up for. This meant, grabbing a few of the free knitted goodies from the NICU washroom because that was how I showered her with love. This meant, I kept a journal and wrote down her weight, number of events, diagnoses, etc.
Feeling numb and detached is OK. Many would be quick to say this is a clear sign of postpartum depression. Yes–maybe in a normal birthing experience and you felt this way for weeks after taking baby home. Even then, it is still OK. It is important to monitor it and make a quick phone call to your provider if anything. But this isn’t the same and should not be categorized the same in my opinion.
2. Fear
This one sounds like a no brainer but the fear in having a baby in the NICU is UNREAL. Just imagine a time when you had a close relative or friend get into a bad car accident, and they were in the hospital… you were in shock. You probably grabbed your phone and keys and rushed to the hospital, legs shaking, palms sweating, heart racing, and mind thinking of the worst. It is that sick to the stomach gut feeling that we all dread. That, right there is how it feels to have a baby in the NICU, but it is like that for every single day, every hour, and for weeks if not months.
When anyone receives bad news, our body interprets this information as a sign of danger. Danger of loss, danger of hurt, danger of pain. It triggers hormonal responses in our brain that influences how our body feels. I won’t get too technical here but all those bodily sensations of imminent danger affects our entire body. Our heart rate, breathing, muscles, tension, digestive system, etc.
Our brain has gone into survival mode, and whether that looks like fight, flight, or freeze for you, it is a real thing. And when we are under this kind of stress for a length of time, it is as if our body’s are “sick” wreaking havoc on our immune systems and overall health, physical and mental.
How I dealt with it. I wish it were a clear cut answer. I just remember that I took A LOT of deep breaths. I knew I was in a fight/flight/freeze mode because I could feel it in my mind and body. I was anxious and afraid every day, though some days were less than others. I knew I needed to interrupt the cycle my brain and body kept looping through…
My brain interpreted danger and so my body reacted, and then my body became so used to feeling that way, that sometimes it triggered my brain to release more hormones to help prepare for danger. It was a vicious cycle and as a counselor, I KNEW IT…and to be honest, there were times it was really hard to stop it.
But when I did notice my stress levels happening, I honored it. I did not fault myself for feeling this way. I knew this was a typical response to an untypical situation. I took my deep breaths and centered myself with the present moment. I looked around the room, focused on things around me, how the chair felt under my legs. I focused on my breath entering and leaving my body, how my chest and diaphragm moved up and down. I had to ground myself.
I allowed myself to cry. I allowed myself to scream. I did not fight it. In my experience, fighting it makes it worse. So I noticed it and focused on sending calming messages back to my brain by calming my body. This sometimes looked like a nap, doing a quick 12-minute HiiT workout, a vent session to my sister/friend/support group, or finding my happy place by writing, creating, or organizing.
3. Anger
I remember being so angry. I was angry at myself. I was angry at my body for failing a full-term pregnancy. I was angry at the fact my family was so far away. I was angry that I had to put my dog down. I was angry that I was in pain. I was angry at the hospital social worker who did nothing to help me. I was angry that people did not get it. I was angry that I couldn’t just fix it. I was angry at pregnant women around me. I was just angry at life for doing this to me. So many times I questioned, WHY ME? What did I do to deserve this?
Then I realized that was the wrong question. It was a complete cognitive error on my part. Personalization. This did not happen to me because of my character. Nor was it someone else’s fault. It just happened.
How I dealt with it. I am not going to lie. Many of my relationships went through hard times because I was angry and lashed out at them. Yes–even me and my therapist-y self. You will notice a pattern here, but I just allowed myself to be angry. We NICU parents have the right to be angry, period.
Anger is a secondary emotion. It is a result of another emotion, sadness, hurt, fear, shame, etc. It isn’t wrong.
Now, I did not allow myself to go break windows or call people obscenities, but I did distance myself from others at times, and I even had difficult conversations with others. Honestly, those who were real friends understood and did not leave.
I had to realize that this was not anyone’s fault. I had to stop thinking about the worst case scenario, about how awful things would be, because that only fueled my anger. And to be honest, I did not know how things would turn out. Another cognitive error on my part, fortune-telling. I had to nip that in the butt whenever I started to go down that rabbit hole.
4. Guilt
As if being a parent does not already come with a serving of mom-guilt, but knowing your body did not “do its job”–it drove that mom-guilt in deeper. Why did my body fail this one job it was made for? That–right there, was the very thought that plagued my inner self even without my conscious knowledge.
The weekend I began having contractions, I was making a new slip cover for my couch. I was knee deep in fabric, foam, batting, etc. and I was heartbroken over my dog, Charlie, dying. I cried so much because that was going to be our last weekend with him. We planned to put him down that following Tuesday when the vet re-opened. So I wondered a lot if my stress caused me to go into preterm labor.
I also have a bicornuate uterus (heart shaped). My OB told me on my first ultrasound and reassured me that no major complications would occur. But, after returning for my postpartum checkup, my doctor said “Oh, it must have been your heart shaped uterus [that caused the preterm labor].” WHAT?? I immediately felt awful. Just another reason for me to blame myself. Great.
How I dealt with it. You probably already know what I am going to say by now. I allowed myself to feel this but I did not let it fester. Knowledge was power here. The more I learned about preterm birth, the more I learned it was an idiopathic occurrence, meaning it happens for many reasons and yet no reasons at all. I read articles, I googled, I read other NICU mom’s stories. They all concluded the same message: it is not your fault.
I mean, there are women out there who use drugs and still have full-term births. So, no…it was not a direct result of my weekend shenanigans, or because my uterus is shaped differently.
I would be lying if I said this guilt never crosses my mind anymore, because it does but its strength is much milder if existent most days. This is even after my mother-in-law accused me of causing my daughter’s prematurity and health issues (we won’t go there today).
I do wonder A LOT about whether this will happen again if I were to get pregnant in the future. Because I do want to get pregnant again. This mere thought sends me panicking some days and I just realize that I am not ready. And, that’s OK too.
5. Sadness
I’ll be honest, sadness was not an initial emotion for me. I felt the others more strongly than this one. I think my sadness was really personal. Nobody understood it… even the other NICU moms on Facebook, were blindly circling through all of these other emotions and sadness never really looked “the same” as another’s. My sadness came out on my drives to and from places, tears would stream down my face because I felt helpless. Helpless as a mom, helpless as a woman, just…helpless. Nothing was in my control anymore.
I was sad for my little girl who was fighting so hard to be here with us. I was sad for my marriage that was literally hanging on by a thread some days. I was sad for my loneliness. I was sad for my uncertain future.
I was sad for everything that was lost. Everything that was going to be lost because of the long term issues that lied ahead.
How I dealt with it. I won’t even repeat myself here…but this emotion was one that I was almost oblivious to because it was disguised as “Oh, I’m Okay” anytime someone checked in on me. Mostly because I had to be OK. I had to fight for my babygirl and that meant putting my big girl panties on. I think my sadness became real when I allowed myself to love her. It may be different for you, but this was how it unfolded for me.
When moments of sadness surfaced, I acknowledged it and reminded myself it was OK to not be OK. I was sad because I cared. I had to make sure it did not consume me though. I had to stop myself from going down a negative Nancy hole. Sometimes this looked like getting up to take my dog for a walk around the neighborhood, FaceTiming my sister or my friends, planning for something (e.g. nursery, next week’s meals, baby shower, etc.), or getting my nails done.
One thing I made sure to do every day though was to cultivate gratitude. Even with our circumstances, I forced myself to find the good in it. Some days I was happy to have a work family that was so supportive, to have the means to do our weekly meal planning, to have a running vehicle to go to the hospital, to be able to pump milk for her, to be able to watch Friends while I pumped, other days I was grateful the fact she was just alive. It could have been worse. It could always be worse. Find gratitude where you can. It will always serve you well.
____________
There you have it, five emotions that I experienced being a NICU mom. This experience has been one ginormous grieving cycle. But, through grief, you discover your strength (because you are a badass NICU parent!), and you find faith… faith in that things can be OK again despite how your picture looks now.
I hope this was validating and enlightening in some way. I know everyone’s journey is different, I hope that you will find peace along the way. It may take a very long time, but it is possible. For me, I had to allow myself these emotions. It was the only way for me to process what had happened.
Even as a counselor who is trained to do exactly this. I was unable to do it purely on my own. I needed help, and that is OK. I sought out counseling and it was my saving grace. I still experience PTSD-related symptoms to this day. Please seek out professional help. It does not mean you are weak. (Did you think I was weak while reading this?)…
For those in the Greater Charlotte area with NICU experience, you can receive FREE professional counseling through the nonprofit Pierce’s Project. It is entirely confidential and with trained counselors in the area.
Disclaimer: This post is for informational purposes only and should not be taken as professional advice. Please consult a professional or use this information at your own risk. View full disclaimer.
Too often people disregard the importance of our mental health. Other times people honestly don’t even know what it really means. Without getting too academia on you, mental health refers to the wellbeing of your mind. Our mind is where we share our thoughts….abouteverything you can imagine.
When a person experiences trauma in their lives, these images can invade our minds and can create a slew of uncomfortable thoughts and feelings. Sometimes our minds don’t even register the trauma right away and we go into survival mode.
The NICU is one place where you can find moms and dads surviving. I know this because I lived this. Even a year out, I still live this but that’s a post for another day.
I think many of you can agree that all parents know what it means to fight for their children. This comes in all shapes and sizes, whether you are working outside of the home, inside the home, or both. You do all that you can for your children. In the NICU, you fight to be with your child, you fight for the best medical care, you fight exhaustion.
As a parent, you are always fighting for them.
But you also have to fight for yourself. How can you be there for your children, like really be there if you are hanging by a thread? Our bucket can get so empty sometimes after giving so much of ourselves. Our mental health isn’t immune to stress, in fact it is so susceptible to stress.
-Yours truly
Here are 5 ways you can fight for your mental health (tried and true from a mental health counselor and a former NICU mom)
Ask for help
This may sound like a no-brainer but I will admit this may be one of the hardest things to do while going through something as traumatic and stressful as the NICU. It is hard because A) we don’t know what to ask for, B) we don’t know how to ask and C) we don’t want to ask because who wants to be a burden? Well I am here to show you the how and what, but before we get to that–let’s look at this burden thing. If you are anything like me and thousands of people out there, you don’t want to ask for help because who likes a “needy person”. Just stop right there and think about it this way… if it were your sister or brother, or a best friend going through your situation, would you think less of them if they asked you for a favor? I am guessing a hard no. So why do we place such judgment upon ourselves?
Next time someone says “Let me know if there is anything I can do”, Just believe it. Believe it without any strings.
Sit down and write down all the things that is stressing you out at the moment. For us, it was laundry, meals, and daily upkeep around the house because we were consumed with working and going back and forth to the hospital. We had NO time for any of the daily things. Our wonderful family and friends offered to bring us meals by signing up on “TakeThemAMeal.com”. You could probably do the same with house chores (though I get why some would not want a colleague cleaning their dirty laundry, maybe save this for a BFF or sibling). It is a sweet gesture, and people want to help. So please let them… it will help you to feel better (less stressed) and help them feel better as well. Trust me.
Honor your feelings
This is a biggie. You might be wondering what exactly I mean by this. Often times when we feel something, something strong and uncomfortable, like anger and sadness when you see a colleague with a very plump 8 month pregnant belly or healthy newborn, you begin to feel confused and even more upset at the ugliness boiling inside. This in turn leads to all consuming negativity in our minds creating more undue stress.
So I say, just honor those feelings. Allow them to come, notice them, and don’t be quick to judge and stomp on them. Journaling might be helpful here so you can just get them out of your head. Your feelings are valid. When we allow ourselves to feel, we are allowing ourselves the opportunity to process everything…which in turn means healing.
This doesn’t mean it’ll happen overnight, nor does it mean we should react to our upsetting thoughts and feelings…not what I’m saying at all. Just allow yourself to experience these rather normative reactions to a very unexpected situation. I mean, you wouldn’t tell your BFF to not get mad at something when they’re mad right? No, you would be supportive. Let’s be supportive of ourselves.
Self care
Ah… I am sure you have heard of this term at some point or another. You might be asking what exactly does this even mean? How do I do this? Well the answer is…it depends. The answer is not a one size fits all kind of thing. Self care is about taking care of yourself…honoring yourneeds. What one person needs is surely going to differ from the next person.
I personally needed to take time off to heal. I also needed hot baths at night. This was soothing for me, and I could justbe for 15-20 minutes without any pressures or constraints. The hot water relaxed a lot of my anxiety and stress and I religiously do it because it is what I need–and that is OK.
Think about what things you need to destress. Is it a hot bath? Girls night? Eight hours of sleep? Afternoon of video games? Time to clean the house? Whatever it is, do it. Make the time to do it. There is no shame in taking time to yourself. It is necessary and too many people overlook this. It isn’t selfish either.
Be active
So I won’t go into the biology of psychology but I will say that this has been proven over and over again in scientific studies. Being active releases endorphins. Endorphins help you feel better. Period. It isn’t just good for your physical health, but it is good, so good for your mental health. Think back on the last time you were active, and picture how you felt right after. YOU can feel this, whenever you want. And while you are at it, you can get some time of not ruminating about how things are so wrong right now.
I’m not saying you have to go to the gym 3 times a week for an hour, or go train to be a CrossFit warrior. I mean take a walk around your block, or go move some furniture around. Whatever it is, get moving. Nobody has ever said “gosh I wish I didn’t work out.” Everyone (well to my knowledge) has always expressed feeling glad they worked out. Exercise/physical activity is nature’s mood-lifting-medicine.
Talk to someone
Last and definitely not least… talk to someone. I know, it’s so cliché. But I cannot stress how therapeutic this is. Though, there is a caveat to this because if I relate this to the NICU, I recall this being such a difficult thing to do. Nobody in my “immediate circle” understood what I was going through, so it never really helped. In fact, I found myself more upset at times. We know all of our friends and family mean well, but unless they have gone through this NICU life, they can only understand so much.
So no, don’t avoid your non NICU friends and family, just know that sometimes they might say insensitive things but only because they don’t know…just seek out other supports right now. You’ll thank me later.
What I found helpful was talking to people who got it. This meant joining some NICU support groups on Facebook. There were thousands of other people out there who “got it” and just having that universality was priceless. One option is reaching out to non-profits, like Pierce’s Project, who can help you navigate the daily struggles of the NICU world. They were instrumental in helping me obtain SSI and Medicaid for my daughter, without that, we would not have been able to afford what was to come.
Another way is to seek out a mental health counselor. I say this not because I am a counselor but because this literally was my saving grace as I went through the NICU. Sure, your counselor may not have had any NICU experience but I will tell you, counselors are trained to be that supportive person you need right now. We provide a safe haven for you to release all the weight on your shoulders, and on your heart. I personally do not know what I would have done without receiving counseling myself. It gave me a safe place to talk about all the upsetting things going on in my life and all of my deepest fears with ZERO judgment. It was so relieving.
There is no shame in talking to a professional. It does not mean something is wrong with you. It means your plate is full, your bucket is empty and you need to recharge. Counseling is the most healthiest thing anyone can do for themselves.
I understand that counseling may not be feasible for many. It can be expensive and daunting trying to find someone. Thankfully there are options.
Call or log onto your insurance portal and search for a counselor, google some in your area or ask around. It’s like finding a dentist. You have to research and find one you like. Fit is so important within the counseling relationship, so don’t settle or get discouraged if the first counselor you see does not jive with you. Keep looking.
Thankfully if you are in the Greater Charlotte area, there is another amazing option—Pierce’s Project. This is a non-profit made up of former NICU parents that are devoted to helping other NICU families. I am lucky to serve on their board and run their new counseling program.
Anyone that has a NICU experience, past or present, can receive FREE counseling (up to 8 sessions) with a professional counselor. It is absolutely confidential and at your convenience. Anyone who is interested should visit http://piercesproject.com/counseling-program for more information on how to fight for your mental health.
So, now this was the fun part, right? Hah… it was surely exciting but so nerve wrecking! We soon learned that the NICU never ends at discharge.
If I am going to be real, and I always will be. I will admit I struggled to approach the discharge. Don’t get me wrong, I love my baby and I wanted to bring her home more than anything. But, in my mind I kept thinking that she would come home like a “typical term baby” would…the NICU was going to allow that to happen. It was going to help her be healthy. The g-tube went against all of that. So, I had to grieve this too, just like I had grieved a full pregnancy and all that goes along with that.
The first week, we were trying to figure out how to live life, not only as new parents but as parents with all of the gear courtesy of the NICU. It was like we had our own little NICU in our bedroom. It was a maze at times trying to sort out the cords and monitors, while learning how to use the feeding pump. Our house beeped all hours of the day and night with all the equipment. To say we were exhausted was an understatement.
I remember feeling such a strong sense of resentment towards my husband during the first few months of “becoming a parent–at home”. I am sure this picture probably resembles much of what occurs in a majority of new parent homes.
Our daughter continued to have GI problems, vomiting became a norm in our home. It was not unusual for her to vomit 3-5 times a day. I would research all hours to find a diagnosis, a specialist, a treatment, anything to help her. Then, I was also fighting with SSI and Medicaid to get coverage for my daughter. If any of you have ever had to deal with these agencies, then you know it is an unbelievably frustrating one. Long story short, I was able to get her on a medical waiver due to her medical conditions but it was a 9 month battle. And, I felt that everything was on MY shoulders, not his. It was a real dark place for my husband and I. But, I will say after some real honest moments, usually painful ones, we have fought our way through it…together, plus the help of a couple sessions with a marriage counselor.
Being a parent means being busy! Each week we have multiple appointments for either doctors or therapies. We are always monitoring something or on the lookout for another thing. But, I will say as she continues to grow and get stronger, we have “graduated” from monthly specialist visits to more infrequent bi-annual check-ups. It is just on her terms, which I should have known would be the case–typical Lucy. (grins)
I won’t go in depth of our feeding journey, because this is a heck of a story in itself. And, it is still going on. But, I will say that our girl had vomiting issues since day one of being home, and it was awful. I felt awful because she had to go through this every day, and I couldn’t fix it though I tried, I tried so hard. It became a massive science experiment, changing one variable at a time and measuring outcomes. Often times with results that did not make any sense. On top of the vomiting was the struggle with oral eating. She never really ate for us, so each feeding was a stressful event. I remember struggling a lot with the thought, “How can my baby not do something as simple as eat?”
She continues to see the GI Feeding Clinic at UNC Raleigh and receives weekly feeding therapy to help her develop the skills and desire to eat. It has been a very slow process, similar to that of the NICU, taking one step forward and taking two steps backwards. But we are grateful for the progress she has made. See, I told you the NICU never ends at discharge.
This GI feeding issue has been the crux of a lot of my stress as a new parent but I have come to live with it. And when I say live with it, I don’t mean succumbing to it…but more so, accepting it in a way that I still find love and joy through it. It wasn’t always like that, there were many ugly moments where I found myself regretting parenthood. It took a lot of processing and support to accept this as our new norm.
I am still pretty vigilant to anything that happens to Lucy, but I don’t think I would be any different even with a healthy term child. And, I still find myself in moments of healing from the NICU. I still think back on some of the losses from having a micro preemie, like a very plump belly, maternity photos, taking home my baby post delivery, etc. My eyes still well up when I reminisce on the tender moments of the NICU that rocked my soul. I can even admit that I do experience some PTSD-related reactions when things resemble a little too much of the NICU but as time goes on, it happens less and less.
Today, I am proud to say we have made great strides in this post-NICU journey. Lucy has grown stronger and is now walking and making messes everywhere like a typical toddler. She plays and laughs in a way that will surely make anyone crack up. She learns every day and I LOVE being a part of that.
My husband and I can laugh and enjoy one another again. We feel like a team again. We go on dates and we plan for the future. I mean, don’t get me wrong, I still want to throat punch him here and there, but I wouldn’t want anyone else to go through this crazy life of ours.
I no longer medicalize everything (this is huge!). And I have come back full circle into civilization again, socializing, working and making meaning out of all this, because NICU life is extremely isolating. It hasn’t been easy by any means. I still struggle at times but with time, things have gotten easier. I hope that for any of you reading this, you know things can get better.
What started out as a blissful pregnancy turned into a nightmare of a birth. To this day, I wonder how we even got through it. I remember the first time I saw Lucy in the incubator. So tiny and fragile. Her skin was so red and thin. All the tubes and wires coming in and out of her. Honestly, she didn’t look like any baby I had ever seen. At this moment, it was all so surreal. I was just there. She was just there. I was in a lot of pain that day from surgery and all I wanted was to lay down and sleep.
I remember for the next two days, I did not even think I was a mom. It never registered in my brain. I did not ask to see her, instead my husband asked me to go. Looking back, I was numb. I was numb to the situation, and I was numb to the emotions. I was just surviving at that point.
I stayed in the hospital for a total of 5 days, and by day four, I started to have a desire to go down to the NICU to see Lucy. We got to hold her under our shirts (aka kangaroo care). It was bittersweet because we knew we would not be taking her with us. We knew there was so much uncertainty about whether she would make it out of the NICU. The one thought that got me through the next several weeks was that she needed to stay in the hospital to keep growing and getting stronger, it was as if the incubator was an extension of my womb.
While at home, I spent my time pumping milk every 2-3 hours day and night. It was exhausting and painful, but I kept at it because it was the one thing I could do for my girl…I mean, I couldn’t keep her safe in me. So this was it. I remember having to deal with clogged milk ducts every single day for the first four months of pumping, and although I was thankful to be able to provide this nutrition, I seriously cried and almost quit every other day.
Another thing I recall vividly was the pain from my c-section. That pain is no joke. I am thankful for a helpful husband who was there for me the entire healing process.
Every day we went to visit our little girl, even if we could only stay for an hour or so. When I left the hospital, I vowed she would not go a day without her parents by her side, so she didn’t.
As I sit here writing this, trying to recall all the ups and downs we went through…I struggle because it all seems like a blur from here. I remember in the beginning weeks, we learned how to “care” for her. We changed her diapers, and checked her temperature. Soon we became comfortable with holding her each time we visited. There were tons of wires and tubes connected to her, it was always a to-do to get her out, and I was afraid to hurt her.
Each visit we looked forward to hear how many oz she had gained and learning of the next accomplishment. Our focus shifted from hoping for a clear brain ultrasound of brain bleeds, to reducing the oxygen support on the ventilators, and then onto feeding. I can never forget the ABD’s of the NICU…Apnea, Bradycardia (Bradys), and Desaturations (Desats). The monitors would beep incessantly every time my girl’s breathing slowed too much, or her oxygen levels went too low, or her heart rate slowed too far down. And it happened A LOT. All of these conditions are so common for micro preemies, and all are so scary. I remember that Lucy had several blood transfusions, countless blood draws, sugar level checks, IVs, x-rays and ultrasounds, so much that I honestly cannot remember it all anymore. One of the hardest things was that she would have one leap of progress one day and then she would take two steps back the next day. It was truly a test of strength and patience.
A moment I remember vividly is when I had gone to visit my girl for a feeding. She had struggled to take from a bottle, and the most she had ever taken was 60 ml, that is 2 oz. She was nearing her due date at this point (when she would have been due if she were born full-term), and I remember having this gut feeling something was wrong. She was quieter than usual, and less active. I got her out of her crib and held her on my bare chest. She looked into my eyes and I instantly felt so much love and sadness at the same time. Here was this little girl that I loved so much but could not take away what was bothering her. I think this was one of the moments that I felt what people call “mother’s love”. Call me crazy, but the look in her eyes seemed like they were saying, “please, something is wrong. help me.”
I told the nurses I felt something was “off” and I waited for the doctor’s rounds. They initially thought it was normal behavior but I pressed and after doing some bloodwork, they found that she had a UTI. Thankfully it was not more serious, but I am so glad I stuck to my gut here. Mamas, listen to your gut.
The time came where all she needed to “learn” was to eat from a bottle before she could come home. Her heart and lungs were fairly stable at this point, which is such a blessing because many preemies are not as fortunate. But, the feeding never progressed despite all of our attempts and I struggled with the idea of going through with the g-tube surgery. Eventually, a nurse, whom I respected very much, said to me, “Mary, this isn’t no feeding issue that will clear in two weeks. You might as well get the tube so you can get your girl home”. She was right, and so we scheduled for the g-tube surgery the following week.
I would like to say the surgery went without any hitches but that wasn’t the case. During post-op, she had a hard time “waking up” from the anesthesia. It was significantly longer than anticipated, and when they did remove her breathing tube, she “clamped down” and her airway closed. They had to reintubate her and place her under sedation to allow the swelling in her airway to go down. This was a terrifying moment for both my husband and I. Here, we finally started to feel like parents…and yet, here we were…facing the thought of losing our little girl.
Thankfully, the second attempt was successful with the help of some steroids and breathing treatments. It was about a week or so later that we brought our little girl home, oxygen tank, monitors, and feeding pump included. We survived our 148-day long NICU journey.
DISCLAIMER: The following information comes from my discussions with other preemie mommies as well as my own personal experience. If you find yourself upset, offended, etc. from reading this, well…we can’t be friends. Hah..I’M TOTALLY KIDDING. If you know me in person, then you know I am just kidding. I welcome discussions about things, so COME! SIT! LET’S TALK! 🙂
This topic has rang true for me throughout these past three months. I do believe that people, just. don’t. get. it. That is, unless you have had a preemie baby in the nicu then you will not understand. I know most of peoples’ comments are not ill intended, they still sting and sometimes make my blood bubble out of pure human reactivity. Because I am always for education, here is my due diligence in teaching others what not to say to a preemie parent so I can hopefully prevent some awkward silences, broken friendships, and further distress to preemie parents beyond what a nicu stay already entails. So if you care at all, don’t be a jerk and read this, k? 🙂
SO WHEN IS SHE COMING HOME? First of all, I know people may genuinely care about this and are curious. But, unless you are a real REAL close friend or family member, just save yourself. Because in reality, said preemie parent is dying to know themselves!!! And we don’t have the energy to continuously explain every detail of why they are not home. Discharge dates are not discussed in the NICU unless it’s imminent. Even then, that can change instantly if the baby just looks at the doctor differently. So, asking this question really just reminds said parent about how much of this sucks that they don’t have their baby home and how out of control they feel. INSTEAD…just know that if there was a discharge date, said preemie parent would be telling you.
YOU ARE SO LUCKY YOU DID NOT HAVE TO DEAL WITH THE LAST FEW MONTHS OF PREGNANCY, THEY SUCK! Oh, yeah? I am pretty sure they cannot suck more than having to worry if your child is going to live each day, leave them with strangers in a fragile and painful state, live in a transient state trucking to and from the hospital everyday and watching your baby being repeatedly stimulated to breathe. So, please do not compare stretch marks, bloating, swollen feet, achy joints, etc. with nicu life. We would give ANYTHING to have had our babies grow inside of us longer. Period. INSTEAD…stop trying to make light of the situation and learn to deal with uncomfortable things, such as the nicu…do not do this at the expense of these fragile families!
WHAT HAPPENED? WHAT DID YOU DO? I feel like I shouldn’t even have to explain this but I do, because people ask this, all. the. time. Let’s just clarify that prematurity is an idiopathic issue, meaning it occurs for many reasons and yet no reasons at all. It is not because the mother did not eat, it is not because the mother ran or exercised. So many mothers who have done drugs and drank while pregnant give birth to full term babies, so please do not categorize this unfortunate occurrence of prematurity with poor decisions and throw around some mom shaming. It is insulting and plain hurtful. INSTEAD…ask, Were doctors able to pinpoint a reason? That is if you are genuinely nosy, I mean curious.
I’M SURE SHE WILL BE FINE. Um, no you are not. Not even the medically trained doctors and nurses can say that, what makes you think you can? This is equivalent to the “don’t worry, it’ll be fine” again, you don’t know that and saying so just aggravates. INSTEAD…say Hope. I hope she will be fine, because that is all we can do, and it’s way more powerful to have others on our side hoping with us.
ENJOY SLEEPING WHILE YOU CAN!! This couldn’t be further from the truth. Us NICU mommies are up in the middle of the night pumping milk for our babies, because doctors drilled into our brains how it is the BEST thing you can do for your baby (I won’t even go into what it is like for moms who cannot/unable to pump), so maybe we don’t get up to feed our babies, but we are making food for them. We also don’t sleep well because we are up worrying about our babies or we lose sleep from going back and forth to the hospital and all that entails. Saying so minimizes our current struggle.
(Gasp) YOU ARE NOT NURSING?? This one gets me. How can you even be confused/shocked/bewildered by this notion? Preemie babies are usually born without the skills to even breathe, let alone suck and swallow, so nursing is not even an option for most. Even if the baby did, whether a woman nurses her baby or not is really none of your business.
LET ME KNOW IF YOU NEED ANYTHING. Famous last words. Don’t get me wrong, I know most people say this because they want to help so they offer…help. The problem is, it is a real broad serving of help and most, if not all, people I know would be too humble to ask. Not too mention most preemie parents are barely getting through each day, let alone knowing what they really need. INSTEAD…say what day is good for me to help come by to get some housework done? Do you have any allergies..? I want to cook a meal for you.
I COULD NEVER DO THIS. That’s wrong… because, well….you could. If you had to. And that is exactly what preemie parents are doing. Doing what they have to. They really don’t have a choice. INSTEAD…express your admiration of their doing it and don’t insinuate this is all a choice because none of this would be anyone’s choice.
GO HOME AND GET SOME REST. TAKE CARE OF YOURSELF. What. This doesn’t even really apply here. Going home doesn’t equate rest. See above. There are tons of house chores that have gone to the wayside, still the normal daily to-do’s, spending 3+ hours a day at the hospital, on top of finishing getting the house ready for the baby and working (yeah, many might lose their jobs and/or become homeless if they do not go back to work). There honestly isn’t enough time to “get some rest” or “take care of yourself” though we all would die to do this. INSTEAD…ask how we are doing and offer help to get the to-do’s done so mommy and daddy CAN rest or take care of themselves.
THIS IS GOD’S PLAN, HE WOULD NOT GIVE YOU ANYTHING YOU COULD NOT HANDLE. Another misled attempt at making another person feel better. I get the sentiment behind this, “let’s look at this in a more positive light”. But, more often than not, surges of anger may rise. Why would God make me go through this? What did I do to deserve this?!!!?
THE BEST THINGS COME IN SMALL PACKAGES. Just. No. Please do not try to make light of this situation. These “small” packages can’t breathe, eat, or live on their own, so no… these aren’t the best right now.
WHY ARE YOU MAD/SAD/ETC? THIS [prematurity] HAPPENS ALL THE TIME. This one literally makes my blood bubble. First off, this approach totally invalidates one’s feelings. So just because prematurity happens, I shouldn’t be upset that I did not get to birth a healthy baby? I shouldn’t be sad that I can’t take my baby home? I shouldn’t be worried sick that my baby might not make it? INSTEAD…just listen and acknowledge their struggle.
ISN’T IT HARD TO BE BACK AT WORK? You are absolutely right. It is really hard to get up every morning and report to work knowing your baby is lying in a hospital bed fighting for their life. Even worse, not being able to afford to not go to work. It isn’t even a choice. So, yeah, it’s really hard. It is even harder to be reminded of it because we are just barely functioning. INSTEAD… praise them for their strength or whatever. Just don’t reiterate how hard it is unless you want a river to flow.
DON’T BE SO PARANOID ABOUT GERMS. … this is just ignorant. I don’t mean that to be offensive by any means but it really is a demonstration of not knowing better. Preemie babies have barely no immune system, so the common cold or the “normal daily” bacteria on your hands or face can wreak havoc on a preemie’s body to the point they may be hospitalized, end up with permanent damage/delays or even die. Not to mention these preemie parents may have witnessed their babies have infections and/or have spent countless minutes washing and sanitizing before they see their babies. So yes, this “paranoia” is needed.
I KNOW EXACTLY WHAT YOU ARE GOING THROUGH. No, ya don’t! Unless you have had a preemie in the nicu, do not do this. Even if your baby was “two weeks early”. It just does not help. INSTEAD…ask about what they are going through and just listen.
Last but not least….
LET ME KNOW WHEN I CAN COME SEE HER. This one is confusing. So many people will offer to see one’s preemie in the nicu. Yet, I don’t know why??? Is this for the parents? Is this for you? Because this is definitely NOT for the baby. The baby actually needs the least amount of visitors. Remember the immune system talk? I get that it might be a gesture of kindness or something, but it is actually a burden for most preemie parents to have to say no, you may not come view my baby like it is a three eyed puppy. At this point you aren’t even asking if you can see the baby but you are basically telling them that you are, just let me know when it is convenient… Newsflash, there is no convenient time right now when they are in the nicu. I will also add that during this tough time in the nicu, it can be a very vulnerable and intimate space for many and some may not want others be around, whilst others crave it…so ask what they want/need! Ask for pictures, ask them to tell you about their baby. There are other ways to express your excitement for the new baby or to spend time with the parents. Ask to hang out with said parents because odds are you haven’t really hung out with your preemie-parent-friend. But, keep in mind this “hanging out” is going to be different now (more to come about that another day). Expect preemie parents to ramble about milestones, like getting to wear clothes, going to an open crib, or breathing all day without an episode, because these are all things term-baby-families take for granted.
Important to note that IF you have already committed one of these, know that if said preemie parent is still talking to you, then Congratulations!! You have got some awesome traits going for you, just make sure to not repeat offend, ok? You may run out of your luck. JUST KIDDING, but seriously…. just be aware of how your words might affect your preemie parents.
If you just noticed that said preemie parent does not talk to you anymore, well….an apology is probably necessitated if your relationship is to be saved.
So, there you have it. The most often said phrases to a preemie parent that probably should not be.
All food for thought. And all from a place of caring to all of the preemie families out there. 🙂
