Category: Parenthood

Feeding Tube, Mental Health, Micropreemie, NICU, Parenthood

The One Thing That Made Me a Happier Tubie Mom

by admin July 2, 2019

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.

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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.

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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.

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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.

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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.

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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.

Happy Shifting Mamas!

 

xx, Mary

Feeding Tube, Parenthood, Travel

Tips For Flying With a Tubie

by admin May 14, 2019

 


In March, I flew to Florida with my tubie. It was just me and her. It was her first time flying so I made sure it was a nice short flight in case things went terribly wrong. I would be lying if I didn’t say I was nervous about how things would go. I mean, it can be stressful flying with a typical toddler, mind you a tubie toddler.

When you have a special needs babe, traveling can feel daunting. See my post on 22 Tips to Keep Your Sanity as a Tubie Mom. There are so many more factors to consider and things to remember. What makes it even more overwhelming, is that every “typical” worst case scenario related to flying with a toddler is multiplied because it won’t be typical… it will be tubie-cal (haha 🙂 )

Things went… good. We had some meltdowns. We had some hiccups, but we survived. And, we plan to make another trip in the upcoming months.

So, if you are thinking of traveling with your tubie but are weary of how to even do it. Here are some things I learned that might help you.

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.

Pack extras

This sounds like a no brainer but what I mean is pack extra feeding supplies but don’t overdo it. I packed enough + one more day. If you pack too much, it can get cumbersome toting it all around.

If you’ll be gone for an extended period of time (think one or more weeks), I would consider shipping the bulk of your feeding supplies beforehand and just bringing a couple of days worth with you.

Prepare with a Book

In the month leading up to our trip, I purchased a book about flying. Maisy Goes On A Plane . This story is age appropriate and cute. It shows all the different “steps” to going on a plane and I believe it helped lessen some of the unfamiliarity for L. She’s about 2 by the way.

Get the better seats

So, flying on Allegiant, they charge next to nothing for their flights, but they charge for everything else. Still, if I don’t check any bags in, I can get away with some cheap airfare. One thing I splurged on on the return flight was extra legroom. Since L is under 2, she flew free in my lap. I will NOT be doing this again but if your babe is still quite small and not so squirmy, go for it. If your babe is like mine, get the extra legroom seats. It made our flight more comfortable, and I actually had room to reach down and grab things from our diaper bag underneath the seat in front of us.

Sometimes I even let her stand in front of me to stretch her legs and get her squirmies out.

Get to the airport early

Another seemingly no brainer but here is why. Security will flag your bags and have you step aside to check everything. I mean, everything. They had me remove all of L’s Nourish pouches and medications to be scanned and tested individually!

So, imagine, two pouches per day, five day trip, plus one extra days worth, meant 12 bags that had to be removed and tested. Plus four liquid medications, opened and tested for vapors.

Fortunately, we traveled through a regional airport that is tiny tiny, so lines were very short. Still, this process took at least an extra 15 minutes. I wasn’t counting because lucky for me, L was screaming bloody murder the entire time and could not be consoled.

Even if this process didn’t take that long, the process of taking things out and putting things back in the bag did. Which brings me to my next tip.

Put all medical supplies, food, and medications in clear plastic bags.

I put all of the Nourish pouches together in one clear trash bag, medications in a large ziploc bag, and all feeding supplies in another clear trash bag. I then placed everything in one of our rolling carry ons. Airlines will allow a carry on size luggage for free if its containing medical supplies. Don’t get stuck pulling out multiple things from different bags, you’ll thank me later.

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Diaper bag (left).   Lucy’s medical bag (right).
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L’s medications, Feeding extension, Split Gauze, Noise machine, Portable Cleaning Kit (left). Nourish pouches, Infinity bags, Infinity pump and charger (right).

You want to make sure you carry these items on in case someone loses your checked bag or it gets delayed. By placing them all in bags, you are 1) protecting them from those germy gray bins, and 2) making it easier to remove/put back during security check points.

Bring a letter of medical necessity

I requested a letter stating of L’s diagnoses and need of medications and feeding supplies to be carried onto the plane. We didn’t need it, but I would hate to think what would happen if you did and didn’t have it.

Bring your pump bag

I used our owl backpack both as our on-the-go bag and her overnight feeding station. I did not want to lug around an IV pole, so I just got a command hook and hung the bag near our bed. You could also just use command hooks and/or velcro to adhere the pump wherever you need. Cheap and easy enough.

Pack the best diaper bag possible

Here’s what I mean, airlines allow you to bring a diaper bag at no charge. So besides the usual diapering necessities, you also need to pack tubie accessories. I used a large backpack like this one, so I could put our small lunchbag (medications, ice pack, and blenderized food pouches) at the bottom plus all of our necessities.

I packed

  • 5-6 diapers (you never know if you get delayed or they’ll have a marathon of accidents),
  • a SMALL pack of wipes (meaning, a half used pack because full ones are 1) hard to carry when holding babe in the other arm, and 2) the security is going to check this too and if it’s smaller, it’s easier and faster to do),
  • a change of clothes for both you and babe. In case of a pukery hits or a messy diaper. We don’t normally have pee leakage during the day, but what do ya know. It happened while 30,000 ft in the air. And, lugging the full pack of wipes, diaper, pee pad (my disposable changing pad), trash bag for wet clothes, and babe on my hip was no feat maneuvering the tight rows on the plane.
  • Heck, pack a small diaper changing wristlet or something. It has to have been better than what I did.
  • Emergency g-tube Kit (see the kits I have here)
  • Pencil box with our g-tube supplies (see mine here), it includes 60ml syringes, extension, and medicine syringes, so if I need to feed L, I can easily with this box
  • Tons of snacks (if your child is oral). Keep these in a larger ziplock, because security might want to check this too (oddly they did for us). I also used these Ubbi snack cups that have a lid so things did not spill out when tossed around.
  • Something to drink or suck on (e.g. bottle, Paci), this helps to relieve ear pressure when flying
  • Sanitizer, Lysol wipes
  • Toys: iPad with downloaded videos from YouTube or games, Buckle pillow, Quiet Book, and the Melissa and Doug Water Wow books (these books are like the best investment EVER, tubie or not, all you need is water and they are reusable!)

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This is our mack daddy diaper backpack. I have diapers (I didn’t end up taking this much but this is the only pic I have); small pack of wipes, pencil case of feeding supplies (syringes, extension), diaper bags, cooler bag with L’s food, bottle, and medications that need to be cold.                      (Not pictured = clothes, g-tube kit, lysol wipes, and snacks). I even shoved a bit of L’s clothes in here, plus her toiletry needs.

Baby wear if you can

Of course depending on the age of your tubie, this may or may not be pertinent. But this was a life saver, because I could calm L down by holding her without actually holding her, and my hands could carry, pull, and push everything we needed.

This was a life saver while moving through the airport, especially the security check point. Because you have to place the stroller up on the machine, and trying to unload all your belongings plus holding a toddler would have been an absolute nightmare. I baby wore her until we got on the plane.

Bring a lightweight stroller + Mommy hook

Boy, oh boy, did I research this one to death. I heard of these amazing lightweight compact travel strollers that fit on the plane! But…. after hours and hours of watching videos and reading reviews, I came to find out US based airlines DO NOT let you bring strollers on board regardless of how small it is. The international flights are more family friendly and allow this practice.

I ended up choosing one that was lightweight (11lbs) and was still fairly compact and had alllllll the best things (e.g. extra large canopy, easy but deep recline, adjustable foot rest, stand up fold, and one handed folding / steering). I chose the ZOE XLC in Navy. Not only is it good for travel, but I plan to use this as my daily stroller and keep my umbrella as a backup.

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Having a stroller may sound cumbersome but I was able to toss some of my baggage on it while baby wearing L. I also put her in it to nap while we waited to board and she slept like a log. Plus, I just plain needed it while in Florida so it was a no brainer.

Use a mommy hook on the stroller to hang your pump bag to feed baby on the go.

Accept help

There will be many times when you will need that extra pair of hands, picking up a dropped toy, putting up your carry on, even pushing your stroller in front while boarding. I was pleasantly surprised how many strangers offered to help me lug everything, and it definitely made things easier.

Breathe, breathe, breathe

There will be trying moments and moments that will wreck your nerves, but you will get through it.

The things I kept thinking of during some of these moments were: the fact I will never see these folks again, so I don’t care if my child annoys them with her squealing cry or bump of their chair (I, of course, try to minimize as much as possible); and second, the joy of getting to visit my family in Florida.

Take lots of deep breaths. There will be a lot of learning moments. You learn only by living. So don’t just stop living because it is uncomfortable to learn! I don’t ever want L to feel like her “special need” is a hindrance to doing things, so I refuse to do the same.

Just think, when you are done… you will have single handedly traveled hundreds of miles as a bad ass tubie mom. 🙂

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What are some tips/tricks that you have learned for traveling with a tubie? Leave a comment below and share the wealth 🙂

xx, Mary

 

Feeding Tube, Micropreemie, Parenthood

How I Stayed Afloat As An Unemployed Special Needs Mom

by admin March 23, 2019

When you join the Special Needs Mom group, you are thrown for a loop. Everything changes about your life. Your day-to-day routines. Your relationships. Your work. Your finances. Often times, you have to give up your job to take care of your little one.

This is what happened to me when I gave birth to my micro preemie baby. She was born 3.5 months early and was in the NICU for 5 months.

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During the first month, I was out of work to recover from my c-section…which hurt like heck!

I was fortunate enough to have maternity leave so my job was protected, but it wasn’t paid. I had accumulated sick days to help cover some of our living expenses in the first few weeks. Thankfully I have a wonderful workplace where generous colleagues donated their sick time to help me out too.

When I was able, I returned to work while my babe was in the NICU. But, I was at a lost for when my baby came home. I was out of any paid time off and my position was no longer one I could fulfill. So, I had to make the difficult decision to leave my dream career so I could begin my new job, a stay-at-home-mommy.

After the first couple of months, it became very apparent to my husband and I that there was no way I could have continued to work outside of the home and still provide the care my daughter needed.

Every week was filled with numerous specialist appointments, therapies, and countless hours on the phone with insurance and medical providers. Not to mention the tube feedings and vomit clean up duties around the clock.

I was exhausted and drained every day. Although my husband works very hard and makes good money, we, like most of you, were accustomed to living off two incomes and it was a stressful time to figure out how to continue to pay for everything.

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Above the obvious suggestions of budgeting, cutting out some luxuries, consolidating, purging and selling stuff around the house, and being frugal; it wasn’t easy, but I have actually been able to thrive in my new SAHM role and here’s how:

Disclaimer: Some of the things I mention are SC state run programs, which may or may not be available to you. I still share in that maybe you can research and find something similar where you live.

  1. MEDICAID

    This wonderful yet very complicated resource provides low income families the ability to receive medical services. It is basically like health insurance that is free to qualified individuals. When my daughter was in the NICU, she automatically qualified for Medicaid due to her prematurity. But once she was discharged, that all changed because now it would be based off income. My husband made too much but we desperately needed health benefits for all of my daughter’s medical needs for appointments and supplies.

  2. TEFRA aka KATIE BECKETT

    This is medicaid for children with disabilities. This program only looks at the child, their disabilities and THEIR income, which should be zero. This program has been an absolute life saver so we could continue going to our appointments and getting feeding supplies at little to no charge.

  3. GAS MILEAGE REIMBURSEMENT

    I learned of this from our case manager. The program is through Logisticare, a transportation service for medical appointments. This program offers two things: actual transportation for Medicaid recipients to and from medical appointments, or gas mileage reimbursement if they are being driven by someone. The reimbursement rate is $0.32/mile. It isn’t a ton, but it adds up when you’re driving to specialist appointments and therapies every week and you’re getting money to do what you would normally do anyway. I generally receive anywhere from $100 to $200 a month depending on our schedule.

  4. MEDICALLY COMPLEX CHILDREN WAIVER 

    I learned about this through our caseworker. This waiver allows us to receive in-home nursing care for my daughter at no charge. My daughter qualified for this program due to her prematurity and her g-tube. The interview was fairly straightforward. They asked about her medical conditions and what it all takes to care for her throughout the day (e.g. medications, tube feedings, etc.). This has been such a blessing! I was very apprehensive at first, but I don’t know what I would do without our nurses. They have become like family, and they allow me some reprieve, as well as the ability to do part-time work and side hustles for extra money.

  5. BABYNET

    This program is typically available in all states, but it is called something different. For instance, in Florida, it is called Early Steps. It is a program geared to providing therapeutic interventions for children under the age of 3 with anything necessary for growth and development. Our Early Interventionist comes once a week to provide therapy to help L meet developmental milestones, such as grasping, climbing, walking, talking, etc.

  6. HEALTH INSURANCE PREMIUM PAYMENT (HIPP) PROGRAM

    This program is through Medicaid and is a life saver too. Currently, we have private health insurance through my husband’s employer, but since it is a smaller company, our monthly premium is insane (like a mortgage insane)! We have Medicaid as our secondary insurance, and so Medicaid has this program that will pay for the child’s insurance premiums. The notion is that this would be cheaper than being our primary insurance and paying for all of the child’s claims in fully.

These resources are beneficial in two ways: by giving us the medical support for services and supplies; and giving me the time and energy to seek out part-time employment.

I never thought I would ever need to take advantage of resources like these, but here we are. Knee deep in specialist appointments, therapy sessions, and down one full-time income. I am SO thankful that there are programs like these because honestly things would be much more stressful. Now, I am a work-at-home-mommy, and I love it.

If you are in SC, feel free to reach out and leave a comment with questions or resources. If you are in another state and have suggestions on resources, share the love below so other mamas can benefit!

xx, Mary

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Feeding Tube, Parenthood

Everything You Need as a Tubie Parent: Emergency G-Tube Kits

by admin March 11, 2019

Having a child with a G-Tube is not your typical motherly experience. Your lifestyle is… different. Not bad, just different. Whether your child has a g-tube because of genetics, prematurity, or an illness, it is an unexpected curve ball. I know you can’t plan for everything, but having a g-tube emergency kit is an absolute must. It will ease your mind, trust me. You have enough on your plate as it is.

Here are the g-tube emergency kits I have created. The first is one to toss in your diaper bag. The second is one to keep in your cars for the big emergencies, like a long trip and potential strandedness.

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Some might think having two different ones may be much, but in my opinion, you can never be too prepared when you have a special needs child.

Mini G-Tube Emergency Kit

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Johnson & Johnson Mini First Aid kit – you can find these for $0.99 at Walmart or Target

This little box is perfect to stash in your purse or diaper bag. It is big enough to house the essentials in case you need to replace your babe’s button, but small enough to not take up so much space in your bag.

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Filled with all the essentials should I need to replace her G-tube

The essential things you need to have with you in case of an g-tube emergency:

  1. Alcohol wipe You never know when you’ll need it, especially if you have dropped any items
  2. G-tube button Ours is a AMT Mini One
  3. Lubricant I got this from our g-tube kit, but you can easily use chapstick, or so I am told
  4. Blue Tee Not exactly sure what this is technically called but it looks like the tees you use in golfing. You use this to insert into the button to keep the shape’s integrity as you insert
  5. Syringe I include a 5ml syringe so you can inflate the balloon with water
  6. Extension Important if you forget yours, lose it, drop it in nasty stuff, and need to give baby some meds, food, water, etc.
  7. Gauze Something clean for absorbing or wiping away the area
  8. Bandaid This is important in case your balloon has malfunctioned and you need to tape down a button into the stoma so it does not close up. The stoma can close rather quickly if nothing is inserted, so it is important to keep the stoma open to avoid another surgery

Big G-Tube Emergency Kit

The next G-tube emergency kit is for the bigger emergencies, like being stranded on a trip without supplies of any sort, or you need to something to hold you over for 24 hours.

This is a Red Cross First Aid case I got from Target one year. It was free as long as I purchased three first-aid items (e.g. bandaids, Neosporin, etc.).

I just love the cute colors and design!

 

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Here is my big emergency kit opened

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All of the items in my big emergency g-tube kit:

  • Nourish ready-feed meal replacement L uses this as a part of her daily diet. We feed this plus a homemade blenderized diet
  • 60ml and 35ml syringes I bolus feed L’s feed now via syringe, other syringe is for water flushes
  • Infinity feed bag I have this in here just in case I need to use our pump (not pictured, and assuming I have it but if I don’t, I have my large syringes) to feed over long periods of time
  • AMT Mini One Extension
  • AMT Mini One G-tube
  • 5ml syringe to inflate g-tube balloon and/or administer medications
  • Lubricant for inserting button
  • Antiseptic wipes
  • Split Gauze To dress her stoma
  • Waterproof Bandaid In case we plan on getting wet
  • Tape If the balloon will not inflate and I need to tape the button into the stoma so it won’t close

 

There you have it folks. Both of my G-tube emergency kits, big and small… both of my sanity savers. I remember in my early tubie days, I used to feel so anxious about things going wrong and not having the tools on hand when out and about. After being a tubie mom for 15+ months, I have had to use these a handful of times. Thankfully, I never needed to scramble or freak out too much because everything was right there.

Now, I never leave home without either of them, and I no longer feel anxious about potential tubie emergencies.

I hope this was helpful to some, and that maybe you will feel a bit less stressed as a tubie parent. 🙂

 

xx, Mary

What’s in your g-tube emergency kit? Leave a comment below 🙂

Adulting, Parenthood, Personal

Why Making Friends Is So Hard As An Adult

by admin March 3, 2019

 

Confession: I am a 34-year-old mom and I don’t really have any much friends.

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My birthday just passed and as I was wished happy birthday throughout the day, I realized they were all from afar. Five years ago, my husband and I moved from Florida to North Carolina, and I still struggle with creating a circle of friends here. I still keep in touch with my group of friends in Florida but it just isn’t the same.

I keep hearing the same story from many other women that they have recently relocated and are having the hardest time building their own village. And, no…we are not those crazy chicks. We are normal, down-to-Earth, funny, and real people that legit struggle to build close and meaningful relationships as an adult.

After my ritualistic boo-hoo cry on my birthday (I know, I know.. it sounds so pitiful but my birthday has always been a sensitive time for me, but that is another post), I was on a mission to find out why it was so hard to make friends at this age.

I went through the usual questioning, Am I that unlikable? Am I a bitch? Am I that closed-off? I couldn’t understand why I felt so lonely, though sometimes I tout that this is my choice. Truth is, we all need friendships. Including myself.

First, I had to think about what a friendship meant to me before I could go digging at what was going awry.

For me, a meaningful friendship is one where you can be your self and not be afraid to verbalize your crazy thoughts for fear of judgment. It is where you know they will be there for you when you sit on your kitchen floor in tears about x, y, z, and they will know what to say to pick you back up. It is having someone to just watch shows with without any expectations to entertain. It is having support in any troubles that come your way, and having a sounding board whenever you feel uncertain. It is having someone to experience life’s joy and learn new things with. It is having someone you genuinely care about and want to add to their lives. It is having someone who accepts you for who you are. It is all of these great things and then some.

But, the problem is… we have had X amount of years to develop this schema about what a friendship should be and we sometimes (me all the time apparently) go into each interaction with such expectation. It isn’t fair to either parties. It is bound to lead to disappointment and feelings defeat, hopelessness, and loneliness.

Okay. So don’t have these high expectations. Got it. Done. But, just lowering expectations wasn’t enough…

I had to learn how to even build a meaningful relationship… like how do you even do that? Most of my friends are my family, old school friends, people who I grew up with. I can’t just get more siblings, nor could I re-grow up. So what now?

A friendship is built on trust first and foremost.

Not only trust that your friend won’t betray you, but trust that you can be your REAL self and not be judged for your silliness, or your ugliness. How many times have we felt like we could not be our authentic selves and suffered through this superficial friendships that make our skin crawl? Me, too many times.

With lifelong friends, you have had years to build this trust. You have had countless opportunities to test this trust, but with new potential friends, we carry this expectation in without allowing the time to grow this deep trust and it results in this oh-super-fun-ficial-friendships-that-make-you-gag.

I firmly believe a lot of what we think others will do, has a lot to do with our own stuff. If we think others will judge us though we don’t have anything to base this off of, it is likely a result of our own baggage… our own self-talk. As much as I practice metacognition, and self-love, I still make self-judgments here and there, and I unknowingly project this onto others, making potential friendships unappetizing.

Another thing I am noticing is, being a mom, and just adulting really makes it so hard to make friends.

Every day I am doing a million and one things, and I just don’t have the time to “hang out”. A lot of my friends came from just being somewhere together, such as school, or growing up in the same place, but when everyone is new to you and you are busy taking care of life, your energy and chances to hang out are next to nil.

Adding a traumatic life event further complicates things because sometimes it can be hard to connect. And I don’t know about you, but my threshold for BS is real low. So there might be a chance I have walked away from things that I did not feel worth it. This isn’t wrong and can be a healthy thing!

I thought I had this wonderful friendship here, but unfortunately it has hit a turning point where feelings were hurt. I am realizing it was either not a strong enough friendship and/or that it was with someone who does not want to or cannot discuss through difficult things. And, I am learning that is OK. Not every attempt will pan out. But it does not make this futile.

I wish I could give step-by-step instructions on how to have more meaningful friendships or on exactly how to be 100% OK with no friends, but that wouldn’t be helpful nor feasible. We are all different, with different lives, and different needs. But if you are like me, who crave those deep friendships but are just too dang busy or tired these days, then the change must come from within.

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So what does this all mean?

It means I will continue to cultivate the meaningful friendships I already have. Thankfully technology is on our side, so texting, calling, and video-chatting are at our fingertips. And, making plans to visit a few times a year is a priority of mine now.

It is not to say that making new friendships is off the table for me, it just means I will not hold each new-potential-friendship with an expectation destined for failure–but with a fresh new exciting start with tons of potential for all-kinds-of-friendships. Not all friendships will become those ride-or-die kinds.

It means that I need to keep it lighthearted and allow things to grow, and expect that it will take work on both ends. All friendships require this, though our lifelong ones don’t feel like it did because a lot of the early hard work happened many moons ago, and now you are in maintenance mode.

So, the next time the opportunity to have a friendship knocks on your door, answer it. Answer it with open arms and a light heart. And, if we have the chance to cross paths… you know where I stand. So…don’t make it weird, k? 😉

And maybe, the fact that I continue to have these meaningful relationships from afar means even more. Blessed, I am.

xx, Mary


 

Feeding Tube, Parenthood

22 Tips to Keep Your Sanity as a Tubie Mom

by admin February 9, 2019

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.

  1. Use a pencil box like this one here to house syringes, meds, and extension while out and about.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. Always double check the bag is closed tight (the lid can be difficult to close tight the first time around).
  8. 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.
  9. 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.
  10. 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.
  11. 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.

    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!).

  12. 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.
  13. 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!
  14. 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.
  15. 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!
  16. 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.
  17. 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!
  18. 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).
  19. Use a mommy hook to hang the feeding pump bag from your stroller, like this one.
  20. 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.
  21. 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.
  22. 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!

Last updated: February 9, 2019. 

Feeding Tube, Parenthood

Sincerely, A Tubie-Mom

by admin February 6, 2019

 

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:

  1. Some children have difficulty with walking. Some children have difficulty with talking. Some children have difficulty with eating–that is my child.
  2. 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.
  3. People will stare. Some make remarks. Others ignore. None feel good.
  4. 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.
  5. I am exhausted. I have tried literally everything under the sun to get my child to eat…
  6. 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.
  7. 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?!
  8. 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.
  9. I have dealt with a pukery of a life for months. And no, IT ISN’T SPIT UP. She vomits.
  10. I can’t just have anyone watch her. Using a g-tube requires training and A LOT of trust. Things can go awry quick.
  11. Leaving home without a g-tube backup is not an option.
  12. At any point in time, my bag may look like I am a druggie with all the syringes and medications.
  13. 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.
  14. 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.
  15. I can convert metrics to ounces VERY WELL.

BUT I ALSO….

  1. Love my child to pieces and am blessed to have her.
  2. 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.
  3. Have accepted this is our norm and she is who she is…A wonderfully stubborn and bright little girl.
  4. 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.
  5. Would prefer if people would just ask me about her feeding tube rather than stare, blatantly ignore, or make ignorant remarks.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. Still have trained professionals watch after my daughter because this too is important to me. It is also very expensive.
  11. Am a pro at inserting a g-tube if needed but still prefer to not have to!
  12. Have made a super cute feeding backpack for my daughter that houses all of her stuff. Because we cute like that.
  13. Enjoy laundry now because I have got the KonMari Method bug, and I LIKE IT.
  14. 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.

 

Mental Health, NICU, Parenthood

5 Ways to Fight for Your Mental Health

by admin January 18, 2019

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….about everything 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)

  1. 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.
  2. 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.  
  3. 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 your needs. 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 just be 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.
  4. 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.
  5. 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.

 

Mental Health, NICU, Parenthood, Trauma

Life After the NICU

by admin January 17, 2019

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.

NICU, Parenthood, Trauma

Our NICU Experience

by admin January 16, 2019

What started out as a blissful pregnancy turned into a nightmare of a birth. To this day, I wonder how we even got through it. I remember the first time I saw Lucy in the incubator. So tiny and fragile. Her skin was so red and thin. All the tubes and wires coming in and out of her. Honestly, she didn’t look like any baby I had ever seen. At this moment, it was all so surreal. I was just there. She was just there. I was in a lot of pain that day from surgery and all I wanted was to lay down and sleep.

I remember for the next two days, I did not even think I was a mom. It never registered in my brain. I did not ask to see her, instead my husband asked me to go. Looking back, I was numb. I was numb to the situation, and I was numb to the emotions. I was just surviving at that point.

I stayed in the hospital for a total of 5 days, and by day four, I started to have a desire to go down to the NICU to see Lucy. We got to hold her under our shirts (aka kangaroo care). It was bittersweet because we knew we would not be taking her with us. We knew there was so much uncertainty about whether she would make it out of the NICU. The one thought that got me through the next several weeks was that she needed to stay in the hospital to keep growing and getting stronger, it was as if the incubator was an extension of my womb.

While at home, I spent my time pumping milk every 2-3 hours day and night. It was exhausting and painful, but I kept at it because it was the one thing I could do for my girl…I mean, I couldn’t keep her safe in me. So this was it. I remember having to deal with clogged milk ducts every single day for the first four months of pumping, and although I was thankful to be able to provide this nutrition, I seriously cried and almost quit every other day.

Another thing I recall vividly was the pain from my c-section. That pain is no joke. I am thankful for a helpful husband who was there for me the entire healing process.

Every day we went to visit our little girl, even if we could only stay for an hour or so. When I left the hospital, I vowed she would not go a day without her parents by her side, so she didn’t.

As I sit here writing this, trying to recall all the ups and downs we went through…I struggle because it all seems like a blur from here. I remember in the beginning weeks, we learned how to “care” for her. We changed her diapers, and checked her temperature. Soon we became comfortable with holding her each time we visited. There were tons of wires and tubes connected to her, it was always a to-do to get her out, and I was afraid to hurt her.

Each visit we looked forward to hear how many oz she had gained and learning of the next accomplishment. Our focus shifted from hoping for a clear brain ultrasound of brain bleeds, to reducing the oxygen support on the ventilators, and then onto feeding. I can never forget the ABD’s of the NICU…Apnea, Bradycardia (Bradys), and Desaturations (Desats). The monitors would beep incessantly every time my girl’s breathing slowed too much, or her oxygen levels went too low, or her heart rate slowed too far down. And it happened A LOT. All of these conditions are so common for micro preemies, and all are so scary. I remember that Lucy had several blood transfusions, countless blood draws, sugar level checks, IVs, x-rays and ultrasounds, so much that I honestly cannot remember it all anymore. One of the hardest things was that she would have one leap of progress one day and then she would take two steps back the next day. It was truly a test of strength and patience.

A moment I remember vividly is when I had gone to visit my girl for a feeding. She had struggled to take from a bottle, and the most she had ever taken was 60 ml, that is 2 oz. She was nearing her due date at this point (when she would have been due if she were born full-term), and I remember having this gut feeling something was wrong. She was quieter than usual, and less active. I got her out of her crib and held her on my bare chest. She looked into my eyes and I instantly felt so much love and sadness at the same time. Here was this little girl that I loved so much but could not take away what was bothering her. I think this was one of the moments that I felt what people call “mother’s love”. Call me crazy, but the look in her eyes seemed like they were saying, “please, something is wrong. help me.”

I told the nurses I felt something was “off” and I waited for the doctor’s rounds. They initially thought it was normal behavior but I pressed and after doing some bloodwork, they found that she had a UTI. Thankfully it was not more serious, but I am so glad I stuck to my gut here. Mamas, listen to your gut.

The time came where all she needed to “learn” was to eat from a bottle before she could come home. Her heart and lungs were fairly stable at this point, which is such a blessing because many preemies are not as fortunate. But, the feeding never progressed despite all of our attempts and I struggled with the idea of going through with the g-tube surgery. Eventually, a nurse, whom I respected very much, said to me, “Mary, this isn’t no feeding issue that will clear in two weeks. You might as well get the tube so you can get your girl home”. She was right, and so we scheduled for the g-tube surgery the following week.

I would like to say the surgery went without any hitches but that wasn’t the case. During post-op, she had a hard time “waking up” from the anesthesia. It was significantly longer than anticipated, and when they did remove her breathing tube, she “clamped down” and her airway closed. They had to reintubate her and place her under sedation to allow the swelling in her airway to go down. This was a terrifying moment for both my husband and I. Here, we finally started to feel like parents…and yet, here we were…facing the thought of losing our little girl.

Thankfully, the second attempt was successful with the help of some steroids and breathing treatments. It was about a week or so later that we brought our little girl home, oxygen tank, monitors, and feeding pump included. We survived our 148-day long NICU journey.