The Neonatal Intensive Care Unit (NICU) is a place where newborns are taken to when they are in need of medical care. Some babies need life saving efforts, such as breathing support, others only need precautionary monitoring of sugar levels before going home in a few days.
Here, many doctors (neonatologists), nurses, and therapists work hand in hand to provide specialized care to these newborns.
A lot goes on in the walls of the NICU, and many different stories happen each day, some short, some long, but all are traumatic.
My daughter spent 148 days in the NICU after being born 3.5 months early. Here are the things that I wish someone told me.
You are about to experience some of the most unnatural motherly things (eg not being able to hold your baby when you want, not being able to feed your baby how you planned, etc).You will have to be OK with not having any control. It’s scary but the more you fight it, the harder it will be.
There are a lot of wires and tubes connected to your baby, and they are all connected to a machine that will beep A LOT. You are about to learn so many medical terms and you will have lots of questions. Bring a journal to not only write down your baby’s daily progress, but to write down questions that come to you throughout the day.
You will be the most scared you will ever be and fear if your baby will live. Take it one
day
hour at a time. Try to not focus on the unforeseen future.
You are going to see a lot of different things, babies with deformities, babies with their organs outside of their body, babies only weighing 1 pound, and even babies dying. This is going to be traumatic, whether it is your baby or not.
You are not going to like all of your nurses and you will have to advocate for your baby to have the best care. Find ones you do like and jive well with, and ask them to be one of your primary nurses. You will feel more at ease leaving your baby with them.
You are going to have to make very tough decisions. Some related to blood transfusions, surgeries, and what to give for nutrition. Ask questions, do your research, and trust yourself. Also know, whatever choice you decide, you made it with the best intentions and the knowledge you had at the moment.
You are going to feel extremely alone and isolated, even if you have a partner and/or family nearby. But, please please know, you are not. 1 out of 10 babies are born premature, this number jumps higher when you factor in other medical conditions that require NICU care.
You are going to feel anger and guilt at the world, and at yourself. This is a natural response. Acknowledge your emotions, and honor them.
You will have days where you don’t know if you can keep going. Remember it is OK to not be OK. Find ways to engage in self care here. Whether that’s taking a hot bath, going for a run, watching a movie, just do it.
You will lose all sense of time and feel helpless a lot. When you experience trauma, your mind and body react as if in survival mode, time isn’t important anymore. This is also a typical response to an untypical event.
Your relationship with the baby’s father is going to hit some hard times. Both of you are going through a lot. Allow yourselves space to do this, but also realize that you both could be a big asset to one another.
You are going to wonder how you will financially survive. And it will be a struggle to find the right choice for your family. Seek out resources with the hospital social worker. There may be medical programs your baby could qualify for that could lighten the financial burden.
You are going to question what you could have done differently so this never happened. Again, a very normal reaction. Our brains are wired to find the WHY. When we don’t have one, we look for anything that can explain it, usually that’s US. Know that this does not equate to actuality, but a grieving process.
You will feel defeated because your baby will make a step forward, and then take two steps back. And, it will happen in almost every aspect of their journey. Take a breath, take many. The NICU journey is a test of many things, patience, courage, endurance. Never is it a test of your worth. Don’t beat yourself up and don’t second guess your experience.
One thing is for certain, the NICU is filled with uncertainties. I will not say that it is a blessing, even though having access to this level of medical care is, but because sometimes stories do not end “happily”.
However, I will say this, whether you get to take your baby home or not, you are changed… forever. You witness the strength and courage of your little baby fighting to be here, and are overcome by this inexplicable love. Your heart is never the same. You develop this newfound appreciation for the little things in life and never, ever, take things for granted. Your precious baby did that–and that is what I take away from my 148-day NICU stint.
As a mom, your life gets busy. Whether you work outside of the home, inside of the home, or both, you are constantly juggling multiple things at once–your house duties, baby duties, work duties…some days it feels like there aren’t enough hours in the day. At least, it does for me.
I am a work-at-home-mom (WAHM). I mostly stay at home with my girl (something I am very blessed to be able to do), but I also run a counseling program for a non-profit, teach psychology to college students, practice counseling, and blog. It can be a lot, but I LOVE all of it. And I wouldn’t change anything about it. So, anything to make my life easier is something I am willing to explore.
Disclosure: This post may contain affiliate links that earn me a small commission, at no additional cost to you. I only recommend products I personally use and love, or think my readers will find useful. View full disclaimer.
Here are 13 things that has made my life easier that I think some of you could also benefit from:
HEADPHONE ORGANIZER I can’t tell you how many times I have fumbled with my headphones trying to untangle them to answer a call or listen to some music. This inexpensive headphone organizer does the trick and comes in cute colors!
REVLON HAIR BRUSH DRYER When I first saw another mom rave about this, I was skeptical and thought it was gimmicky. But boy am I glad I was wrong. This thing is life changing! I can dry and style my hair in one go, and my hair looks so quaff within 10 mins!
LEGGINGS WITH POCKETS Do I need to say more? Every mom has a pair or two, or six of these and the pockets make running around easy. You can put your phone, card, and keys in them, so your hands are free to wrangle, I mean hold your child.
STARBUCKS READY BREW COFFEE I don’t know about you, but hot coffee seems like a unicorn these days. This actually tastes like the drinks from Starbucks and you can have it hot or cold!
NOT YOUR MOTHER’S DRY SHAMPOO So, I naturally have oily hair, and need to wash every day or every other day. But who has time for this?? NOT ME. Even with the revlon hair brush dryer, I am not one to want to style every single day. Now I can go 2-3 days and LOOK put together. Just don’t touch it.
GYMBOSS TIMER I wholeheartedly believe that working out should be prioritized. Now, I am not perfect and there are days where I don’t but those are usually when I am sick or physically unable to. I am also not one to go to the gym and work out for an hour either. I like short, intense workouts that will give me that good-feeling afterwards. This timer makes it possible for me to do this from the comforts of my own home. I usually do 50 seconds exercise, 10 seconds rest for a total of 12-15 minutes each morning.
BULLET JOURNAL (BUJO) I need a way to organize my life, and my bujo lets me do just that. I use a blank dotted journal (like this one) and create my monthly and weekly spreads, the flexibility allows me to create what suits my life at the moment. It isn’t for everyone but it works for me because I can make lists, draw out plans, record important things anywhere without having multiple notebooks and planners to tote around.
BLOCK SCHEDULER On top of my bujo, I find using block scheduling a necessity when it comes to organizing my time life so that I can get my tasks done. I first learned about block scheduling when I was in grad school and it was a life saver. You essentially block off time slots for specific tasks, like house chores, meal planning, work stuff, anything you can imagine. but I even use it to visualize my entire day, like when I have me time, when I can do house things, when I spend undivided baby time. Of course, my days don’t always follow this strict timeline but having a guide definitely helps me to keep on track on what is important to me.
OIL DIFFUSER Now I won’t get all earthy crunchy here but I do use an oil diffuser to help me have a better night’s rest. I diffuse lavender as I lay down for bed and I have noticed my sleep is of better quality. I have actually been able to sleep less but better, giving me more time to get stuff done.
SILICONE RING This may sound minuscule but wearing this instead of my wedding ring has made things bit easier. I used to get my ring caught on stuff and worried about it getting too dirty cleaning or doing projects, so I would constantly take it off and put it back on, which I almost lost one day in a parking lot! Plus, these rings are cheap and come it cute colors/designs. Both my husband and I rock these, and we love them.
POP SOCKET Now I know what you are thinking, we aren’t 16! But let me tell you how much it has made a difference. I use my phone a good bit, for work, for entertainment, for socializing (I FaceTime and Skype A LOT to stay in touch with people), for shopping (ahem) Amazon, and it makes holding my phone so much easier. No more weird indentation on my pinky!
GROCERY PICK UP This isn’t technically a “thing”, but more of a service. A direly needed service. I shop at Harris Teeter and love that I can do that from my phone and pick it up curbside. I would also mention delivery services but I use it VERY sparingly as they mark up items to compensate for the fees.
GOOD WATER BOTTLE I can’t stress how important it is to drink plenty of water. But sometimes you just don’t have time or you forget while doing a million things. I find having a highly accessible yet portable water bottle to be key. You don’t worry about it spilling and it requires minimal effort! I like ones with straws because I don’t have to “open” anything, but they aren’t entirely spill proof. If y’all have any suggestions on water bottles, I would love to know!
I would love to hear what you must-haves are. Leave a comment below!
I know what you are thinking…she doesn’t like to be a mom?!? (GASP) How not? Or…like most of us, you are thinking… FINALLY, SOMEONE ADMITS IT.
Being a mom is tough. It is the one “job” where you are not given any directions and yet are pressured to be phenomenal at it, all of the time. Of course, it isn’t always explicitly stated so, but the message is there.
I have been a mom for almost 20 months, and though it may not be anywhere as long as many of you, I wanted to share my experience and validate that sometimes being a mom isn’t rainbows and butterflies..
I don’t like being a mom because…
I am winging it 20/7 of the time and the pressure to perform makes me sweat… and I don’t like to sweat
I love to sleep and I don’t get to do that as much as I would like anymore
I eat so fast that I don’t even taste my food so in turn I shove a lot more in a shorter amount of time on an infrequent basis which…see below
My body is no longer mine. There are rolls in places I didn’t know could exist and bumps in places that I don’t want to list (hey, that just rhymed 😉 )
I do everything in this hurried fashion because there is always a pair of arms tugging on me or this high pitch pterodactyl squeal coming at me in the most inopportune times
I’ve lost my cool more times than I’d like to admit… I’ve yelled in frustration and have had to take A LOT of breaks and then sat on my kitchen floor crying. Yeah…not the glorious side of parenting.
I get so worked up sometimes about doing “what’s right” and it gives me such anxiety
We live in a world where we have to be vigilant of abductors and hurting another is commonplace, and it terrifies me to think of losing her
Even when I am “alone” I am not away from the many tabs open in my mind
I am plain old tired
Maybe this is just adulthood, magnified. Definitely magnified. Having to put another’s wellbeing before yours is the epitome of adulthood, except that as a mom, that person is no longer your significant other, friend, even your job….it’s now your own flesh and blood, one that you are solely responsible for to keep safe, healthy, and thriving.
So yes–I don’t like being a mom…but the truth is I love being a mom because…
I get a rush in being present with my daughter, living and learning as we go. I get to do something new each day and that’s freakin’ exhilarating.
I have learned to prioritize my health better so although I sleep less, I sleep well and have more time during daylight, I even make a point to exercise every morning to start my day
And as I lay down to go to sleep, I get this excitement to see my girl’s face in the morning. Like, I miss her even after spending many minutes begging getting her to sleep
Even though I don’t get to eat like I used to (all leisurely and crap), I do enjoy the times I get to even more.
She is the only one who knows how my heart sounds from inside, and how her body melts into mine when I hold her–like puzzle pieces coming together…that is priceless
When she raises her arms towards me, and I am so consumed with the fifteen tasks in front of me, I am blissfully reminded of her love for me and it is so beautiful
I often find that I am pushed to my limits, mainly my patience (if you know what I mean, of course you do), and each day I cherish how much I grow because of her
I love the force of being a mama-bear, it is this fire within me that makes me beam with pride. I wear my mama-bear crown high.
I believe wholeheartedly that she will make (has made) a difference in this world and I get a hand in that–that’s pretty amazing.
No matter how busy life gets and how tired I feel, I realize that after it is all said and done, I have been blessed with this gift. Not only is she a gift to me, what I am to her is also a gift. Who I am, who I strive to be for her, is nothing short of a gift.
You know, before her, I was never one to love children…in fact, I was bewildered how some people could get so giddy about children. But, now I know. Once you experience firsthand how amazing it is to see this little human being grow and learn right before your eyes, it changes you.
I get to witness a true miracle. She came into this world at 1lb 10oz and fought so hard to be here, and never ceases to amaze me with her resilience, strength, and courage. Getting to see how much she learns and grows every single day is nothing short of a blessing, and it literally makes my heart melt each time.
The sweet innocence in her eyes, and the silliness she brings into my day gives me so much joy that makes it ALL worth it. So when, I am in one of my ‘I dislike this mom stuff’ (which is totally OK), I remind myself that this exhaustion from the early years is a season of life for us, one that will drift and I will miss her arms coming towards me one day. So, I vow to stay as present as possible, be my best self for us, to be grateful, and cherish these sweet moments. Because this is the hardest job I will ever love.
Being a mom to a tubie is not easy. It is actually pretty confusing, especially in the beginning, and very frightening. I have been on this tubie journey for 15 months now and want to share some of my tubie mom wisdom, so maybe it can make your life a little less stressful, because let’s face it–life is anything but easy right now!
Disclosure: This post may contain affiliate links that earn me a small commission, at no additional cost to you. I only recommend products I personally use and love, or think my readers will find useful. View full disclaimer.
Please keep in mind that this list is for informational purposes and it is not to be taken as medical advice. This is what worked for MY child but yours may have different needs. You need to discuss this with your child’s medical provider before trying any of these or do so at your own risk.
Use a pencil box like this one here to house syringes, meds, and extension while out and about.
I keep her miracle syringes for feeding and medications, as well as her extension in here.
I think I got this one really cheap from Target.
Accept the fact that you WILL feed the bed. If you have already, Congrats! You have joined the club. I have a waterproof cover on her mattress (like this one), PLUS two dog pee pads under her fitted sheet. This way, it isn’t that big of a mess to clean up when it happens.
Waterproof cover on the bottom, Two pee pads, then put fitted sheet on top.
Ta-Da! Bed that will minimize clean up when you feed the bed.
Vomiting will happen. Unfortunately. Keep puke buckets around the house. I literally used whatever I could find that was easy to wash out (e.g. plastic tray, toy bucket, even a small baking pan…don’t ask). Also helpful to line everything with a dog pee pad. We ordered ours by a 100ct box off Amazon.
Make a G-tube emergency kit. In fact, make three! One for each car, and one for the house. Here is a look at one of my mini kits. I also have bigger ones (check out my post on g-tube emergency kits) that have a feeding bag and back up formula in case of a bigger emergency.
Johnson & Johnson Mini First Aid kit – you can find these for $0.99 at Walmart or Target
Filled with all the essentials should I need to replace her G-tube: backup button, lubricant, syringe, extension, alcohol wipes, gauze and bandaid in case the balloon malfunctions and I need to tape the button in place. (got this idea off another mom on Pinterest).
Hoard as much supplies as you can. It is stressful to think you will run out of “life-saving” supplies. Ask your durable medical equipment (DME) company for as much as you can (e.g. back up buttons, feeding bags, extensions, syringes, gauze pads, tape, formula, etc.), and just donate to another tubie mom later if you don’t need them.
Join the Facebook Group for feeding tubes: G-Tube Babies (G/J), (J), (N/G), and (N/J). These mommas are such a wonderful resource for support, tips, and place for supplies.
Always double check the bag is closed tight (the lid can be difficult to close tight the first time around).
If you are using a Kangaroo or Infinity pump, make sure to get all the air out of the bag so in case your bag tips, it won’t pump air in the line. And, learn the trick to priming the line without holding the Prime button down.
Have your DME’s number saved on your phone. There will be emergencies and you will need to contact them quickly. Don’t search paperwork for that.
Change the settings on your pump so it DOES NOT beep when done. Get sleep! Find the PDF for the Infinity Teal pump here. Scroll down to page 19.
When we give continuous feeds overnight, we use a lunch bag with icepacks so I did not have to get up and refill. Ours looks like this.
Cute little lunch bag from Target
I sewed some soft velcro to hold the bag
This is how it looks with feeding bag and ice pack
How we hang it on our IV pole in her room
I will add that the rate we set the pump overnight is very slow that when the formula/food reaches to her tummy, it is room temp and not cold anymore. (note: use caution and consult with your medical providers to see if your formula/food is cleared to do this!).
Make a chart / schedule for all the feeds and medications. It will ease your tired mind and allow others to follow directions so you can get a break.
This is what I give to our nurses when they are here.
And…my husband. Lol jk
Watch and learn how to reinsert a g-tube. It will happen. I panicked and screamed the first time it happened but I took a deep breath and put on my big girl panties. You can do it too!
Not all babies are the same. If your baby continues to vomit or have problems with feeds, and your GI doctor/nutritionist don’t seem to really help, get a second, third, fourth opinion!! Unfortunately providers don’t have all the answers and us mommas need to advocate for our babies.
Get a feeding pump backpack from your DME or make one! I have both and LOVE my waterproof owl one. I ordered it here. We use it even though we don’t use the pump during the day anymore. I put her food, button supplies, emergency kit, diaper, wipes, etc. in it. It makes traveling so much easier and cute!
Our cute waterproof Owl back pack
G-tube kit
Inside of what we normally carry: diaper, wipes, pacifier, travel case with feeding supplies
Our old setup when we used the pump all of her feeds
The feeding line runs through the inside and into the front smaller pocket to the pump, then out the front
GET THE MIRACLE O-RING SYRINGES. PERIOD. You will not regret this. The disposable ones from the DME have caused me to send food flying to my ceiling and the roof of my car, twice. They cost about $3 something for a 60ml syringe from this website. The numbers don’t rub off and they last months! No joke! Worth. Every. Penny.
When I have needed to vent my girl’s tummy, I found connecting the extension to a large 60ml syringe without the plunger worked best. I just have her lay on her back, hold it above her tummy to allow air to travel upwards. It is burptastic!
In case of an emergency, I have GENTLY pulled back with an empty syringe to check for stomach contents when I had to replace a button instead of going into a hospital and expose her to nasty germs (note: If you decide to do this, use so much caution and be very gentle as to not pull when there is resistance).
Use a mommy hook to hang the feeding pump bag from your stroller, like this one.
In this journey you will become many things, and wear many hats, a nutritionist, a gastroenterologist, a feeding therapist, even a scientist. You will learn to try different things and record results each step of the way in hopes for positive change. Keep a journal! See how I used my bujo for this.
This was from July 2018 when I tracked her bottle intake. You can see I note vomiting, bowel movements, and really any changes in meds or things I think could affect outcome
This is from November 2018. As you can see I became a little more lax and did not track intake as much here. I think this is where I shifted to not obsess/stress over it every day
I don’t know your story exactly or where you live, but if your child has a feeding tube, there is a chance that they will qualify for Medicaid based solely on medical need, even if you are over the income requirement. Look into medical waivers in your state as well (if offered in your state), you will probably qualify for in home nursing care. We live in SC and thankfully have these resources available. Initially I said no to nursing, but I am glad I took a chance. It has been a major blessing! I can now work part-time, run errands, do housework, and even have some me-time because of this wonderful resource.
Last and most important, don’t forget to breathe. Tubie life is not for the faint at heart but you got this! We never thought feeding issues were going to be in our future as a mom, but these kiddos are strong and so so special. I swear my girl has taught me so much being her mom, things I don’t think non-tubie moms could ever know.
Take a bow momma–you are amongst the badass tubie mom crew. Wear your crown high, and if you falter… have no fear, we have to stand together. No? Too much? Yeah, Okay, I know. I am just so tired that I get all giddy 😉
Again, please keep in mind that this list is for informational purposes and is not to be taken as medical advice. This is what worked for MY child but yours may have different needs. You need to discuss this with your child’s medical provider before trying any of these or do so at your own risk..
What are some things you have learned along your tubie journey? I would love to hear from you!
My daughter was born at 26 weeks gestation and was in the NICU for 148 days. She left the NICU with oxygen support and a feeding tube. Feeding was her biggest hurdle and it came to a point where that was her last “check box” before being discharged from the NICU, so we decided to get the gastrostomy tube (G-tube) and bring her home. That was 15 months ago.
Our Tubie journey has been one heck of a ride and I would be lying if I said I was happy about it the whole entire time. Here is a list of things I wish I didn’t have to say:
Some children have difficulty with walking. Some children have difficulty with talking. Some children have difficulty with eating–that is my child.
It is probably one of the most unnatural ways to eat, but this is the only way my daughter could eat. This was a very difficult notion to grasp…I fought real hard against this. The thought of “my child could not survive without this” killed me.
People will stare. Some make remarks. Others ignore. None feel good.
I count calories, I calculate macros, I measure water intake, I measure EVERYTHING…because I am trained to. The doctors in the NICU and countless GI experts and nutritionists drill into my exhausted mom-brain to properly nourish my child. To do otherwise is insinuated as neglectful. Sadly, eating has become a medical procedure.
I am exhausted. I have tried literally everything under the sun to get my child to eat…
My brain is fried. I have researched hours upon hours on why she won’t eat, and I have spent countless hours exhausting all measures with appointments and tests.
I don’t know when the tube will come out. Nor do our doctors and therapists. It used to eat me up inside wondering why can’t my child just do the most simple thing as eat?!
I have to schedule my days around her feeding schedule, which many would consider fairly typical of any oral eating child. But what you don’t know is that I am also scheduling around all of the little nuances too (e.g. splitting up a 3oz meal into two with a 30 minute break, not giving too much water too fast and waiting 15 minutes before starting the feed, allowing an hour of rest after, etc.). Not to mention needing to keep her fairly confined so I can connect her to the extension and feed her.
I have dealt with a pukery of a life for months. And no, IT ISN’T SPIT UP. She vomits.
I can’t just have anyone watch her. Using a g-tube requires training and A LOT of trust. Things can go awry quick.
Leaving home without a g-tube backup is not an option.
At any point in time, my bag may look like I am a druggie with all the syringes and medications.
I have probably (I say probably because I don’t know your story) done more laundry than the average new mom. Courtesy of the vomit and bed feeding incidents.
I grieve over the idea of simply orally feeding my child. I may have even unknowingly stared at another mom feeding their child and cried inside.
I can convert metrics to ounces VERY WELL.
BUT I ALSO….
Love my child to pieces and am blessed to have her.
Know the tube doesn’t define my daughter, she is MORE than just how she eats. I don’t want her to define herself by this so I won’t, and you shouldn’t either.
Have accepted this is our norm and she is who she is…A wonderfully stubborn and bright little girl.
Am grateful for medical advances to allow us to keep her alive, but I also feel deep down she would somehow kick life’s butt regardless.
Would prefer if people would just ask me about her feeding tube rather than stare, blatantly ignore, or make ignorant remarks.
Have stopped measuring every little thing. Trying to de-medicalize feeding IS NOT easy but yet so liberating at the same time. I still make sure she is properly nourished but I am thankful she is healthy enough for me to “treat” her as a typical oral eating toddler, sort of. She eats an awesome diet of nutritious foods now, just blended and tubed.
Have stopped searching incessantly for medical reasons because, well, I have already done it all. But also because it wasn’t healthy to put myself under such stress.
Continue to go to doctor and feeding therapy appointments frequently and even travel 3 hours for specialists, because it’s still important to me to provide the best care possible.
No longer cry and scream every time she vomits, partly because it has slowed down a lot, but mostly because I am overcome by compassion when it happens.
Still have trained professionals watch after my daughter because this too is important to me. It is also very expensive.
Am a pro at inserting a g-tube if needed but still prefer to not have to!
Have made a super cute feeding backpack for my daughter that houses all of her stuff. Because we cute like that.
Enjoy laundry now because I have got the KonMari Method bug, and I LIKE IT.
I have also reached the stage of acceptance with my grief. It was NOT an easy journey and I’d be lying if there weren’t fleeting moments of fear and sadness when I think about her tubie future. But I no longer am filled with angst and jealousy. Just pure love and compassion. She did that to me.
P. S. If I am snappy about you asking “when the tube will come out?”, it isn’t because I am mad at you. It isn’t because I am offended. It is because I am tired. Tired because I ask myself that question countless times a day. Because our doctors and therapists don’t even know. Even though I have accepted it, I still like to have some normalcy in conversations. So feel free to ask me about her, what she’s doing, how she’s doing, and let me bring that up. It just isn’t the one thing I want to talk about with everyone all day, that’s all. I still love ya though.
😉
Here is a pic of my Happy Tubie. Don’t mind the hair, she just woke up from a nap while mommy was folding laundry.
This is the smile she gives when I ask her where her button is.
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.
Here is a pic of my Happy Tubie. Don’t mind the hair, she just woke up from a nap while mommy was folding laundry.