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.
So, it hit me tonight that I haven’t posted a new blog in OVER 4 WEEKS!! I honestly thought it was only 1 maybe 2 weeks. Time has seriously flown by. It wasn’t all a blur though, I took Lucy to Florida to visit family a couple of weeks ago, which was SO needed. I missed my family.
And, honestly I miss seeing Lucy with my family now. But, that’s not what this post is about, so back on track.
I have felt less-enthused about blogging, and at first, I had no clue why. But, as I reflect on these past couple of weeks, I realize that I was feeling a bit lost with my life.
First, I got caught up in selling vacuums. Yes, I know. I know. WHAT THE HECK right? Well…..let’s just say I now know I am not meant for sales, ever. That is 9 days I can never get back. JK. It was a lesson well learned and I got a pretty damn awesome vacuum out of it.
Then, I was approached by the chair of the non-profit I work with about entering in a somewhat new role. One that would take considerably more of my time each week. Regardless of how nervous I was am to take on this new responsibility, it all excites me. I can’t wait to start creating a new program!
What has me lost is the ugly truth that I have been half-assing the non-mom-parts of my life, and it became so apparent to me while I sat at my work desk with very little to show. I had all these expectations of how being a working mom would look like. I wanted to do so much and leave my mark, but I hadn’t and it bothered me.
Don’t get me wrong, I love being a mom, in fact I love it more than anything else. It brings me so much joy. But, where was the other part of me that craved recognition and prestige? Hibernating. It was hibernating under all the diaper changes, feeding schedules, doctors appointments, and never ending housework. It was also hiding under a lot of fear.
Until now.
I am tired of feeling defeated by all the what-ifs in my head and sitting paralyzed by my fears.
What if it is pointless?
What if I waste my time?
What if it doesn’t make a difference?
What if I fail and look like a complete fool?
What if I don’t know what to do?
What if I get too overwhelmed?
What if I hate it?
What if I regret it?
What if someone is better than me at it?
Maybe some of these thoughts are no stranger to your own head. You know it isn’t a pretty place to be. You feel overwhelmed by your own self. (what kind of crap is that, right?) And that kind of stress is the most daunting because you cannot just walk away from it.
Until now.
I had to sit down and get my head back in the game. I knew I had to start with the most important question…
WHAT do I want?
Think about what is important to you. What are the things that really matter to you? Is it family? Is it creating? Is it working? Is it traveling? This surely isn’t a black/white thing, and you may end up with a pie chart when it’s all said and done.
For me, I want to be the best wife, mom, sister, and friend I can be. I want to help others. And I want to make shit, period.
WHY do I want it?
This step is soooo important. I wholeheartedly believe that when you know the why, you will figure out the how, no matter how hard it is.
So ask yourself, why do you want to focus on __________ ? Do this for each focus in the previous question.
Because I love my family. Because I find value in having social support. Because I have skills that can make a difference in others’ lives. Because I am artsy fartsy and I feel good writing and creating.
Then, I had to see how it would be possible.
It isn’t a matter of IF it will be possible, because you already know the why. So, this step is a matter of logistics. Will you need to rework your schedule? Try BLOCK SCHEDULING. Will you need to revamp your self-care? Will you need to reestablish boundaries? Will you need to make some changes to your inner circle? to your work? Will you need to put yourself out there?
I created a new block schedule where I carved out chunks of time to see if I could even swing this new professional role and adding another day to my other job into my already busy schedule.
Next, I had to create the plan.
This will clearly look different for everyone. Write down the steps it would take to not just “reach” your goal, but live a life aligned with your values, your “what-matters”.
For me, it meant a 1 year goal of going heavy on getting clinical hours under my belt so I could have the freedom to create my own work with as little restrictions in the future.
It meant that I will consciously spend my time more wisely, and stop mindlessly scrolling on social media. It meant that I will make it a point to nurture all the parts of me: wife, mother, sister, friend, professional counselor, blogger, and creator.
I revisited my block schedule and went into more detail. I carved out time devoted to both of my professional roles, adding in time to be with my husband and Lucy, making sure I have me time every day (this is where the housework, personal stuff, and artsy / organizing / writing stuff goes), self-care choices (sleep schedule, work out time, bath time, planner time, etc.), planning trips to visit family and friends, and the ever-important flex time. Flex time is free time to do whatever it is that floats my boat at that time. It might be time to complete something from earlier that day, tackle a task that popped up that week, or have an impromptu outing with Lucy.
I don’t believe every hour should be planned to a T, because let’s face it. Life doesn’t follow no dang schedule, unless you are in jail that is. But, guidelines do help and allows you to keep focused on the things that matter to you.
Plan it. Put it into motion.
And, this is where you take a list of small behavioral changes that align with your vision and run with it. Even if you have 8 lists like me, do it a little bit each day. This is how you cultivate joy and bring your dreams into fruition.
Some of my things included: have outside playtime with Lucy every day, have date night weekly, make a list of workshops I want to run, attend a monthly craft event, go goodwill hunting (because this also feeds my soul), etc.
And just like that, I was no longer less-enthused. I was actually hyped to get shit done again.
When you are feeling lost, sit back and take a breather. Find out what you want, why you want it, and then the rest will follow. And even if you find yourself answering YES to any of those scary thoughts earlier, just know that those too can also be answered with your reasons why.
One of my reasons why: Being with her <3
Lucy and I with my two beautiful sisters at the Blueberry Festival. Lucy is being a gracious taste-tester.
Hoping you all find peace in the midst of the chaos of juggling all of your roles. Remember, you are enough, and always will be, period.
We always say to treat others like how we would like to be treated, but the truth is… we often treat others how we DO treat ourselves. And, it ain’t pretty.
Have you ever taken a moment and reflected on how you talk to yourself? Maybe it goes something like this, “Gosh, I’m such an idiot… why did I do that?” or “That is so dumb of me to think this way” or “Nobody likes me because I am too boring” or “I’m not a good enough mom/friend/wife/sister”, or my favorite “what is wrong with me????”
Let’s pause here a minute.
Have you ever said these things to your friends? your loved ones? even a coworker? I’m going to guess, no. But, maybe you have in a less direct way. I see these things happen on social media ALL THE TIME. Mom shaming or just shaming in general is so prevalent and it literally makes me sick.
I have learned over the years that people put others down because that is how they react to themselves when they feel like their behavior is “bad” or “wrong”. We project our own stuff onto others.
I say all of this to bring to light the real issue…. our focus shouldn’t just be on building compassion for others but on developing self-compassion.
When we can collectively engage in self-compassion, we will naturally give it others. Our focus needs to be on improving our selves in order to have a second order effect on our society.
If you think about it, how can we tell others to have compassion for another when we continue to berate ourselves day in and day out? That is like asking someone to tie another person’s shoe when they cannot tie their own shoe.
So, I am sure you are wondering how do we develop self-compassion?? The answer is quite ironic.
Treat yourself how you would treat others.
Be your own BFF. We often treat our best friends soooooo much better than we treat ourselves. So, the first step is to be your own best friend forever. Quit being mean to yourself. Watch your self-talk and ask yourself, would you blatantly say this to your BFF’s face? If the answer is a no, then change it.
Honor yourself. Don’t beat yourself up for what you think, feel, and do. This only leads to self-criticism. Honor what you think, feel, and do. Remind yourself that you do your best. And, your best changes from minute to minute. Have empathy for yourself.
Give yourself grace. Be thoughtful and courteous to yourself. Treat yourself with respect and try to not put impossible standards upon yourself. Let it go.
Invest in yourself. When we invest in another person, we inherently build a sense of understanding and love for them, and all that they strive to do, including their failures. It’s important that we do the same for ourselves. Creating a vision board is one way to start doing this!
Build healthy boundaries. So often, people harp about having boundaries with others, which are definitely important, but we neglect the boundaries we have with ourselves. I have been guilty of allowing myself get pushed around by my own self. Honor your desires. Respect your needs. Stop beating yourself up. Allow yourself to take care of your self, say NO when you want or need to. And be quick to catch your negative self-talk.
Of course, these are all easier said than done. It is going to take time and lots of practice to make these habits. Awareness is key though. When you catch yourself doing any of the self-compassion-killing things, just acknowledge it, and try harder next time.
Stop focusing on all of your “failures” and “shortcomings” and look at yourself as a whole, be mindful of yourself.
Eventually, that window will become smaller and smaller, and you will be able to practice self-compassion more consistently.
In essence, trying to have more self-compassion is an act of self-compassion in itself. So you are already in the right direction. I wholeheartedly believe that with these “simple” steps, our world could be a better place. Or at least we will treat each other a little bit better and we will love ourselves that much more.
I challenge you today. Hug yourself. Do something you want and need today, purely for yourself. You deserve the best. You deserve to be your best, whatever that may be at this moment in time.
How do you practice self-compassion? I would love to know, leave a comment below!
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.
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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.
