Fun and memorable way to celebrate your Girl Scouts’ achievements!
Whether you have a Daisy Scout and are in the process of earning petals or are working on a different badge or journey patch, grab these certificates to celebrate their hard work and dedication.
In the first year of Girl Scouts, you are likely working towards earning the Daisy flower badges. There are 11 total possible badges for the Daisy in your life – 1 promise center and 10 petals – each representing a core value of the Girl Scouts.
If you are working towards a different badge, say the World Thinking Day Patch or the Buddy Camper Badge, these fully customizable certificates are perfect for celebrating these accomplishments! They are entirely customizable in a few easy steps and reusable for all the different types of badges, patches, and journeys your girl achieves.
Chinese New Year falls on February 10th this year and 2024 is the year of the Dragon. Traditionally, adults hand out red envelopes with money inside them to children, family members, friends, and even coworkers to wish them luck, health, and abundance.
The amount you place inside the red envelope can vary depending on closeness of the relationship, but generally vary from $5-$100, ($5 for acquaintances, $10 for friends, $20+ for your own children, and $100+ for close elders).
Unfortunately (not really because it’s still money) the envelopes you usually find in stores and markets are pretty plain and very traditional. Hence I decided to design some that were a little cuter and more to my style to hand out this year.
Download and print these with the pdf file. Assembly requires some cutting and gluing, and takes less than a couple of minutes to do! I recommend using card stock paper for a more sturdy envelope. Each one prints on a US Letter sized sheet, and the final product fits US Dollars perfectly!
Start off the new year right by wishing others well with these red envelopes!
When you have a troop of 15+ girls, it can get awfully confusing and overwhelming to remember which girl earned what petals. And, with absences and/or changes in volunteers, it can be even harder to track whether those petals were handed out at the meetings.
Make your life easier by getting this Daisy Petal Chart and Tracker place it into your leader binder so you can focus on the more important parts, the girls and their experiences!
Also, recommend using a zipper pencil pouch or hard pencil case to hold all the petal badges, and these fun Daisy Petal Certificates to give to each girl for a memorable experience. You can present these during a meeting or ceremony, or hand them out to parents to honor their dedication and hard work.
Whether you are a new tubie mom or a mom with many moons under your belt, I think we can all attest to the fact that tubie life IS HARD.
It’s hard not only for the many reasons that can lead to our babies having a tube (e.g. countless uncertainties and diagnoses, numerous hospital/doctor visits, food aversions, weekly therapy appointments, etc.), it’s hard because it isn’t what we thought motherhood was going to be.
None of our daily routines look like what we envisioned and it’s frustrating beyond words some days. Gagging, vomiting, severe food aversions, are all a reality for many of us and it’s mentally and physically exhausting.
My little L had her gtube placed while in the NICU and we were nervous but we were so excited to finally have our babygirl home.
My tired exhausted self enjoying some snuggle time.
To say it was a learning curve is an understatement. Unbeknownst to me, this was going to be one of the hardest journeys second to the NICU.
My husband and I were exhausted from the regimented feeding schedule and all the processes that accompanied tubie life. Clamp, meds, unclamp, flush, clamp, beep beep, clamp… repeat. Sound familiar?
Not to mention I was pumping around the clock and dealing with wretched clogged milk ducts every single day.
And….. our L vomited A LOT. We were told to keep offering her the bottle, and if your babe was anything like ours, it was a struggle each time.
Precisely how we all felt about feeding time.
We would not only pour our energy to do all the tricks to get her to eat but we also poured our hearts and hopes, only to be disappointed 95% of the time. She never drank more than 30ml at one feed and this was rare.
But then, she’d puke that up more than half of the time.
L’s first time drinking 1/2oz for us. Yes, she did puke it up shortly after…
I was exhausted and overwhelmed.
I remember crying in disappointment, not in her, but in me. Why can’t my girl eat? What am I doing wrong? Why is she puking all the time?
Then I remember crying in anger. This can’t be a good life for her! Why is this happening to us?? Why is she puking?! Why won’t she just eat??! Why can’t the doctors or therapists help us!?
Then after hours of researching, I would feel encouraged to find a solution. If only I did x, y, z, then that’ll fix everything.
Only to find that it wasn’t… again, my hopes were crushed and I felt discouraged many days.
As you can see, motherhood for me wasn’t the joyous time everyone protested it to be. Don’t get me wrong, I love my girl more than anything but I felt so angry all the time.
Until, I did this.
I was in one of my lows with tubie life. L must have puked 5-6 times that day and I was exhausted from cleaning up vomit and smelling like it. I was tired of being house ridden because we were afraid of the pukery in the car or in public.
L with her infamous puke bucket
After my boo hoo cry, I remember thinking, this isn’t a good life for ANY OF US. I was so stressed out, my marriage was on the rocks, and I knew my girl could feel it.
Then it hit me. I don’t want my L to grow up thinking all she is worth is whether she can eat or not. So I had to stop focusing so much on that. Read that again.
There is so much more to L than her ability to eat. She was cooing, smiling, shaking toys. She had come so far from her little 1lb 10oz self. But if I wanted her to grow up knowing how amazing she was/is, then it had to start with me.
I had to make the shift from “Did she eat? How much? Did she puke? Oh nooo!! Dangit! How was she positioned? What is wrong now?” to
“Oh, she tried some! Cool.”
“As long as her food experience is positive.”
“Look at everything else she is learning.”
“She’s alive, I’m alive.”
“So what if she has a tube all her life? She’ll be quirky as all hell.”
I want L to have a healthy relationship with food. Not a stressful one. So again, this has to start with me.
Once I made this shift in my thinking, it was life changing. It wasn’t an immediate 180 but I felt so much more peace. Feedings weren’t as stressful anymore. There wasn’t this undue pressure 6-7 times a day. I was more able to enjoy motherhood and my marriage again.
And, coincidentally or not, she started to drink more or at least allow things in and around her mouth without gagging and puking.
Even as a licensed therapist I struggled with tubie life… it took me 6+ months to get to this place and I needed this perspective change.
This isn’t to say I gave up trying to find out the source of her vomiting or inability to eat, but there wasn’t this pressure to figure it all out right then and there.
There were still moments of disappointment and frustration but they became less intense and less frequent with time and practice.
This was a new way of thinking and like any other skill, I had to keep practicing to become better at it..for it to become second nature.
Your brain is like a muscle, and the way you think is a skill. Learning something new will take time and practice for you to be good at it.
So allow yourself some grace as you learn a new way of thinking. Allow yourself to feel what you feel but gently nudge yourself to think differently, to believe differently as you’d like a best friend to do for you when you’re upset about something.
I know for damn sure it isn’t easy. But you’re not alone mamas. Whether it is a gtube, CP, trach, mobility issue, speech issue, whatever the struggle is, we all struggle and it’s a process of grieving. So many of us out there struggle with this very thing, though our plates may look different, we still feel the weight.
So, please feel free to comment about your tubie (or special needs) mama journey and your own experience with the ‘shift’. It may just be the one thing another mama needs to hear.
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.
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.
Cute little lunch bag from Target
This is how it looks with feeding bag and ice pack
Our cute waterproof Owl back pack
Inside of what we normally carry: diaper, wipes, pacifier, travel case with feeding supplies
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.
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!)
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.
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. 🙂
What are some tips/tricks that you have learned for traveling with a tubie? Leave a comment below and share the wealth 🙂
So, it hit me tonight that I haven’t posted a new blog in OVER 4 WEEKS!! I honestly thought it was only 1 maybe 2 weeks. Time has seriously flown by. It wasn’t all a blur though, I took Lucy to Florida to visit family a couple of weeks ago, which was SO needed. I missed my family.
And, honestly I miss seeing Lucy with my family now. But, that’s not what this post is about, so back on track.
I have felt less-enthused about blogging, and at first, I had no clue why. But, as I reflect on these past couple of weeks, I realize that I was feeling a bit lost with my life.
First, I got caught up in selling vacuums. Yes, I know. I know. WHAT THE HECK right? Well…..let’s just say I now know I am not meant for sales, ever. That is 9 days I can never get back. JK. It was a lesson well learned and I got a pretty damn awesome vacuum out of it.
Then, I was approached by the chair of the non-profit I work with about entering in a somewhat new role. One that would take considerably more of my time each week. Regardless of how nervous I was am to take on this new responsibility, it all excites me. I can’t wait to start creating a new program!
What has me lost is the ugly truth that I have been half-assing the non-mom-parts of my life, and it became so apparent to me while I sat at my work desk with very little to show. I had all these expectations of how being a working mom would look like. I wanted to do so much and leave my mark, but I hadn’t and it bothered me.
Don’t get me wrong, I love being a mom, in fact I love it more than anything else. It brings me so much joy. But, where was the other part of me that craved recognition and prestige? Hibernating. It was hibernating under all the diaper changes, feeding schedules, doctors appointments, and never ending housework. It was also hiding under a lot of fear.
Until now.
I am tired of feeling defeated by all the what-ifs in my head and sitting paralyzed by my fears.
What if it is pointless?
What if I waste my time?
What if it doesn’t make a difference?
What if I fail and look like a complete fool?
What if I don’t know what to do?
What if I get too overwhelmed?
What if I hate it?
What if I regret it?
What if someone is better than me at it?
Maybe some of these thoughts are no stranger to your own head. You know it isn’t a pretty place to be. You feel overwhelmed by your own self. (what kind of crap is that, right?) And that kind of stress is the most daunting because you cannot just walk away from it.
Until now.
I had to sit down and get my head back in the game. I knew I had to start with the most important question…
WHAT do I want?
Think about what is important to you. What are the things that really matter to you? Is it family? Is it creating? Is it working? Is it traveling? This surely isn’t a black/white thing, and you may end up with a pie chart when it’s all said and done.
For me, I want to be the best wife, mom, sister, and friend I can be. I want to help others. And I want to make shit, period.
WHY do I want it?
This step is soooo important. I wholeheartedly believe that when you know the why, you will figure out the how, no matter how hard it is.
So ask yourself, why do you want to focus on __________ ? Do this for each focus in the previous question.
Because I love my family. Because I find value in having social support. Because I have skills that can make a difference in others’ lives. Because I am artsy fartsy and I feel good writing and creating.
Then, I had to see how it would be possible.
It isn’t a matter of IF it will be possible, because you already know the why. So, this step is a matter of logistics. Will you need to rework your schedule? Try BLOCK SCHEDULING. Will you need to revamp your self-care? Will you need to reestablish boundaries? Will you need to make some changes to your inner circle? to your work? Will you need to put yourself out there?
I created a new block schedule where I carved out chunks of time to see if I could even swing this new professional role and adding another day to my other job into my already busy schedule.
Next, I had to create the plan.
This will clearly look different for everyone. Write down the steps it would take to not just “reach” your goal, but live a life aligned with your values, your “what-matters”.
For me, it meant a 1 year goal of going heavy on getting clinical hours under my belt so I could have the freedom to create my own work with as little restrictions in the future.
It meant that I will consciously spend my time more wisely, and stop mindlessly scrolling on social media. It meant that I will make it a point to nurture all the parts of me: wife, mother, sister, friend, professional counselor, blogger, and creator.
I revisited my block schedule and went into more detail. I carved out time devoted to both of my professional roles, adding in time to be with my husband and Lucy, making sure I have me time every day (this is where the housework, personal stuff, and artsy / organizing / writing stuff goes), self-care choices (sleep schedule, work out time, bath time, planner time, etc.), planning trips to visit family and friends, and the ever-important flex time. Flex time is free time to do whatever it is that floats my boat at that time. It might be time to complete something from earlier that day, tackle a task that popped up that week, or have an impromptu outing with Lucy.
I don’t believe every hour should be planned to a T, because let’s face it. Life doesn’t follow no dang schedule, unless you are in jail that is. But, guidelines do help and allows you to keep focused on the things that matter to you.
Plan it. Put it into motion.
And, this is where you take a list of small behavioral changes that align with your vision and run with it. Even if you have 8 lists like me, do it a little bit each day. This is how you cultivate joy and bring your dreams into fruition.
Some of my things included: have outside playtime with Lucy every day, have date night weekly, make a list of workshops I want to run, attend a monthly craft event, go goodwill hunting (because this also feeds my soul), etc.
And just like that, I was no longer less-enthused. I was actually hyped to get shit done again.
When you are feeling lost, sit back and take a breather. Find out what you want, why you want it, and then the rest will follow. And even if you find yourself answering YES to any of those scary thoughts earlier, just know that those too can also be answered with your reasons why.
One of my reasons why: Being with her <3
Lucy and I with my two beautiful sisters at the Blueberry Festival. Lucy is being a gracious taste-tester.
Hoping you all find peace in the midst of the chaos of juggling all of your roles. Remember, you are enough, and always will be, period.
We always say to treat others like how we would like to be treated, but the truth is… we often treat others how we DO treat ourselves. And, it ain’t pretty.
Have you ever taken a moment and reflected on how you talk to yourself? Maybe it goes something like this, “Gosh, I’m such an idiot… why did I do that?” or “That is so dumb of me to think this way” or “Nobody likes me because I am too boring” or “I’m not a good enough mom/friend/wife/sister”, or my favorite “what is wrong with me????”
Let’s pause here a minute.
Have you ever said these things to your friends? your loved ones? even a coworker? I’m going to guess, no. But, maybe you have in a less direct way. I see these things happen on social media ALL THE TIME. Mom shaming or just shaming in general is so prevalent and it literally makes me sick.
I have learned over the years that people put others down because that is how they react to themselves when they feel like their behavior is “bad” or “wrong”. We project our own stuff onto others.
I say all of this to bring to light the real issue…. our focus shouldn’t just be on building compassion for others but on developing self-compassion.
When we can collectively engage in self-compassion, we will naturally give it others. Our focus needs to be on improving our selves in order to have a second order effect on our society.
If you think about it, how can we tell others to have compassion for another when we continue to berate ourselves day in and day out? That is like asking someone to tie another person’s shoe when they cannot tie their own shoe.
So, I am sure you are wondering how do we develop self-compassion?? The answer is quite ironic.
Treat yourself how you would treat others.
Be your own BFF. We often treat our best friends soooooo much better than we treat ourselves. So, the first step is to be your own best friend forever. Quit being mean to yourself. Watch your self-talk and ask yourself, would you blatantly say this to your BFF’s face? If the answer is a no, then change it.
Honor yourself. Don’t beat yourself up for what you think, feel, and do. This only leads to self-criticism. Honor what you think, feel, and do. Remind yourself that you do your best. And, your best changes from minute to minute. Have empathy for yourself.
Give yourself grace. Be thoughtful and courteous to yourself. Treat yourself with respect and try to not put impossible standards upon yourself. Let it go.
Invest in yourself. When we invest in another person, we inherently build a sense of understanding and love for them, and all that they strive to do, including their failures. It’s important that we do the same for ourselves. Creating a vision board is one way to start doing this!
Build healthy boundaries. So often, people harp about having boundaries with others, which are definitely important, but we neglect the boundaries we have with ourselves. I have been guilty of allowing myself get pushed around by my own self. Honor your desires. Respect your needs. Stop beating yourself up. Allow yourself to take care of your self, say NO when you want or need to. And be quick to catch your negative self-talk.
Of course, these are all easier said than done. It is going to take time and lots of practice to make these habits. Awareness is key though. When you catch yourself doing any of the self-compassion-killing things, just acknowledge it, and try harder next time.
Stop focusing on all of your “failures” and “shortcomings” and look at yourself as a whole, be mindful of yourself.
Eventually, that window will become smaller and smaller, and you will be able to practice self-compassion more consistently.
In essence, trying to have more self-compassion is an act of self-compassion in itself. So you are already in the right direction. I wholeheartedly believe that with these “simple” steps, our world could be a better place. Or at least we will treat each other a little bit better and we will love ourselves that much more.
I challenge you today. Hug yourself. Do something you want and need today, purely for yourself. You deserve the best. You deserve to be your best, whatever that may be at this moment in time.
How do you practice self-compassion? I would love to know, leave a comment below!
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.
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.
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.
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.
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.
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.
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.
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.
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!
NBC’s hit show, This Is Us, has captured many hearts since its debut in September 2016. Recently, this show has aired an episode where Kate has a preemie at 28 weeks gestation, and it has had created an uproar amongst the preemie community all across the world.
Some moms have stated, “I was crying so hard…it hit too close to home”, and others have blatantly said they “can’t bring themselves to watch it”.
Moms who have had preemies all experience trauma. Their birthing stories are far from the normal sweet moments we all envision after becoming pregnant. Many moms are hospitalized days or weeks prior to try and prolong pregnancy through the use of medications and medical interventions. Others are whisked into emergency surgeries due to life threatening complications such as HELPP or placenta previa. All of these moms are frightened down to their bones that their baby may die or live with life threatening or altering conditions.
If the birth was not traumatic enough, the aftermath may even be worse. Typically, these preemie families spend months in the Neotnatal Intensive Care Unit (NICU) afterwards as their baby learns to do the most basic functions, such as breathing, eating, and keeping their heart rate going.
Here, these families are greeted with so many heavy emotions, fear, panic, worry, guilt, exhaustion, confusion, sadness, helplessness. The list goes on and so does the time in the NICU.
Many preemie moms share that even after their discharge from the NICU, they are scathed for life. The trauma continues. Often, these preemie babies do suffer from lifelong conditions (eg cerebral palsy, genetic abnormalities, feeding disorders, etc) that lead to a life of special needs no mom ever imagined.
When Kate’s water ruptured spontaneously, my heart immediately sank. First, I feared the worst, but then, I felt this weird jealousy. I KNOW, RIGHT? It was as if I was like, “yeah, no way… she will probably carry to term. Lucky her.” Now, don’t get me wrong. Never, EVER, do I wish the NICU upon anyone. But for a fleeting moment, some of my darker emotions from the early NICU days came over me.
Then, Kate and her husband, Toby, meet their baby in the NICU and the tears flow. They flow hard. My instant reaction was to shut it off but I forced myself to watch it. I didn’t want to avoid my fears. So, I grabbed my tissues and sobbed along.
NBC / Rob Batzdorff
NBC did a wonderful job capturing all the nuances of the NICU, the beeping, the wires, and most importantly, the baby. It all looked so real.
I don’t know about you, but I empathize so hard when I watch This Is Us. It gives me all the feels, and this episode was no exception. All of my emotions came rushing back, the sadness, the fear, the worry, the despair…all of it. I was scared for Kate and Toby. Not just for the immediate situation, but what was to come.
I just kept repeating, “Oh my god…he is so small…. he is so tiny”
It made me realize how small my L was, but I never “knew” it. Of course I knew how much she weighed and saw her every single day, but it never truly registered until that night. It seriously made me think about how numb I was in our NICU days.
My post-show reactions are conflicting. I hate that it was so hard for me to watch it. But, I love what this episode has done for everyone else.
My sweet L (26 weeker) at just a couple of weeks old
It has given us preemie moms a voice. It has shown the world (the millions of viewers at least) a glimpse of our reality. Of course, I have yet to see what is to come on the upcoming episodes, but I am inclined to think that it will increase the awareness of our journey and let non-NICU families “feel” and understand our world a little better. And, hopefully it will bring to light the importance of mental health during a medical trauma that many have been unaware of up until now.
Unfortunately, moms of preemies, including myself, will likely continue to be triggered through the upcoming episodes. I know I have cringed a little at the thought of the next episode but I am also excited to join Kate’s journey (if you can’t tell already, I’m the type to get real involved in shows 🙂 ).
NICU PTSD is real. Certain sights, smells, noises, and situations can trigger strong emotions, and even make functioning difficult for some. But, I’m here to tell you that it shows up in all degrees. It isn’t always the clinical PTSD we are familiar of when we think of combat veterans. It is in the mom who cries and trembles after a they watch a television show of a NICU. It is in the mom who spends countless hours taking care of her special needs child every day but then falls apart at night when she finally gets a moment to break down.
I don’t say this to scare or diagnose. Actually, quite the opposite. I say this to validate our experiences as preemie moms. And, to know that regardless of the degree of PTSD some of us walk around with, you are not broken. You are living through a very traumatic experience. You are not crazy. You are not alone. You are most definitely not a problem to be fixed, but rather healed.
These recent episodes have helped me to see that I, too, have some degree of PTSD from our NICU journey, and that is OK. It is OK to not be OK, and I will be OK.
It is my hope that these new episodes will nudge some moms out there to seek professional counseling to work through their experiences. I cannot stress enough how vital it has been for me to heal through counseling.
And for those who are already working through their experiences, I hope this helps them to feel validated and just a bit more desensitized to the trauma so that each show day gets just a little easier to bear.
I would love to hear how this episode has been for you. NICU mom or not. All experiences welcome. Leave a comment below!
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.
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
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.
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:
Alcohol wipe You never know when you’ll need it, especially if you have dropped any items
G-tube button Ours is a AMT Mini One
Lubricant I got this from our g-tube kit, but you can easily use chapstick, or so I am told
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
Syringe I include a 5ml syringe so you can inflate the balloon with water
Extension Important if you forget yours, lose it, drop it in nasty stuff, and need to give baby some meds, food, water, etc.
Gauze Something clean for absorbing or wiping away the area
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!
Here is my big emergency kit opened
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 🙂
