What’s Inside My Emergency Hospital Bag

Sometimes emergencies happen and, when you’re a family with medically complex issues, inpatient hospital stays are something you need to prepare for. No one wants their child to catch a cold and end up in the hospital for a week but it does happen (it’s happened three for us) and a little preparation can help that impromptu trip more comfortable. 

That’s why I pack an Emergency Hospital Bag. I leave the bag hanging, ready to grab, in the event I need to call an ambulance or hop in the car for a trip to our Children’s Hospital. It’s sort of like a diaper bag but for parents and kiddos. After we get home (and I’ve showered, slept, and Netflixed … priorities 😉 ) I re-stock the bag, getting it ready for the next unplanned hospital visit. 

Today, I’m sharing what’s inside my emergency bag — I promise, I’ve used this bag several times and I’m always so thankful to have it on hand!

Necessities:

Clothes: I have one change of clothes for myself and Uriah. For myself, I like to take modest, relaxed pj type clothes so that I can have something decent to wear while I wash the outfit I came with. I also keep a spare headscarf. For Uriah, I keep a couple onesies with pants, one pj zip up, socks, bibs, and burp cloths on hand.

Toiletries: Travel size deodorant, toothbrush and paste, Tylenol (for the inevitable headaches that come with exhaustion, stress, and busyness), chapstick and lotion. (The hospital air is SO dry! You’ll be happy you brought it!)

$5 and meal vouchers: When your little one catches a cold and a minor sickness turns into an ambulance ride, increased ventilator settings, and multiple IV pricks you won’t have time to eat let alone keep tabs on your checking account. I keep $5 in my bag because sometimes you really, REALLY need a cafeteria Dr. Pepper and burger and a freebie $5 snack can be the pick-me-up you need. 

I also tuck away spare meal vouchers and use these throughout the stay. What is a meal voucher? It is happiness for the inpatient mom or dad who can’t leave their little one. Ask to see your floor’s social worker and request meal vouchers (which they often do for families who live more than 30 miles from the hospital).  

(And don’t be embarrassed. I know it feels like a hand-out but, sweet person, it’s not. You and/or your insurance are paying oodles and many hospitals are happy to offer meals. It’s super beneficial because you’re able to call a meal in and not leave your little. Just ask. 🙂 )

Comfort Items: 

Think happy, time-passing things. In my bag I have a magazine, a few toys for Uriah, my sleeping eye mask, a book I’ve been meaning to read, and peanut butter crackers.

For Christmas, D gave me a beautiful thermos and coffee cup set; it was one of my favorite gifts since he knows how much coffee comforts me during stressful times. I’ll plan on filling it up at the Ronald McDonald room and sipping on it throughout the day.

I’ve also got a handwritten note with Scripture a friend gave me when we began our NICU journey — it always encourages!

You could also throw in: slippers, a cozy blanket, earphones, travel size laundry soap, adult coloring books and pencils, travel size games (I’ve got BananaGram) sleeping mask, stationary, chocolate, phone charger, and your Bible.  

The key is to keep your bag light yet packed full of goodies that will make your hospital stay more comfortable. 

Whenever I get a chance to pack for a long hospital stay I bring along my diffuser (with Thieves and Lavender essential oils), extra outfits for Uriah, several of Uriah’s favorite toys and books, and I’m hoping to purchase a small french press one of these days. Goodbye nasty hospital coffee! Ha! 

But life is unpredictable so having a light, prepared, on-hand Emergency Bag gives peace of mind. Sometimes, making life easier requires just a little effort and preplanning but it’s absolutely worth it!

Tell me — are you a medically complex family? How do you prepare for unexpected hospital stays? What is in your Emergency Bag? Leave a comment below! I’d love to hear your thoughts! 

Happy packing!

Frannie

My Advice to New Trach Parents

My heart goes out to parents with children who have a tracheostomy and/or rely on a ventilator for airway. We’re currently in the middle of that adventure and though there are some hard and taxing days I wouldn’t change my son being able to breath safely and well for anything!

Here are 5 bits of encouragement and trach life hacks we’ve learned along the way.

1) It will get better … but it’s going to be a hard road for a while.

For a lot of parents, a tracheostomy is a last resort we pray never comes and when it does we expect immediate relief.

But sweet parent, it might not happen that way. I’ve found it’s very common for children to struggle immensely after getting their trach. It’s a whole new ball game from intubation.

Our son experienced multiple blue spells and codes during the first few weeks after the tracheostomy. There was one day when I literally said goodbye because the issues where so mysterious and complex; they were talking about giving him paralyzers so his body would relax and get his carbon dioxide back into safe numbers. It was horrible.

Here’s what needed changed: vent settings especially the PEEP needed raised, frequent suctioning, and most importantly, our son needed a longer trach.

That day I thought we were losing Uriah? It was the same day ENT finally did a scope, discovered he needed a longer trach, and it proved to be the “magic” we needed to give Uriah some relief; the trach wasn’t long enough to keep his bronchial open (TBM).

Of course, every child is unique and each reason for a tracheostomy is different. I’m just sharing what helped us overcome those hard, early days of #trachlife.

2) Listen to the doctors … but listen to your gut most of all.

You will come to know your child best; doctors specialize in medicine and diagnosis’ while you specialize in your child. We highly respect our medical team’s opinions but I’ve discovered that no one knows our son like we do!

I have woken up in the middle of the night, listened to the way Uriah was breathing, and known he was coming down with a sickness before it ever presented itself.

Your gut, instincts, and advocacy are vital in how well your child thrives.

And all the good doctors will tell you so!

3) Learn to go solo

When we first came home from the NICU, trach and tie changes were a two person job that involved sweat, nervous anxiety, and preparation.

Only when Uriah showed us he was stable and only when we were comfortable did we learn to change trachs solo. (If your child does not tolerate trach changes then do not make things worse by going solo!)

But if your child is stable, tolerates changes well, and you have a game plan in mind, it’s a good skill to master. Things happen and you might be by yourself when you need to do a sudden, unplanned trach or tie change.

My tips?

  • Practice changing the ties while someone is close by in case you need help.
  • Always have your new trach, ties, padding, wipes, and other tools ready and laid out on something sterile and clean before you start.
  • Train your child to sit still. It won’t happen immediately but eventually you’ll learn. You know how hard wrestling a toddler is to change a diaper? Imagine trying to put a piece of important plastic back into their tiny neck while they try to escape!

4) Suction, saline, and tie padding

You’ll learn the words and all the tricks associated with them! Here are a few tips our NICU nurses and fellow #TrachParents taught me.

  • Do not suction too deep, it will cause irritation, damage, bleeding, and soreness.
  • But don’t be afraid to suction! Your little one needs to breathe and that means suctioning until the goop is gone (or do a trach change). One trick is to squeeze a few droplets from a saline bullet into the trach to help clear any plugs that may have formed. But caution! Only a few droplets and suction immediately as you don’t want to drown your little!
  • It’s very common for the sensitive skin beneath the trach ties to break down, turn red, and even open into sores! Thankfully, Uriah has never had an issue with that and I think it’s partly due to being faithful in changing his ties and keeping clean, dry padding underneath. We used to use Mepilex to wick away moisture but now we use 4×4 Split Sponges cut in half and love it.

5) Nursing can be helpful … but do what’s best for your family.

Some NICUs will give you the option for home nursing; most likely, your child will qualify for so many hours a month and you can choose to use the hours in the day or nighttime hours depending on the availability of nurses.

And while some parents need nursing (because their child is unstable or highly care intensive) know that you do have the choice.

We chose not to have nursing and it was the best decision for our family. We’re a introverted couple who enjoy family time; we never felt comfortable with the idea of someone being in our home while we were sleeping or working. There were too many variables for us to consider nursing an option. (We did try nursing for about 2 months after being home for 5 but it ended up not working out and that’s okay! Our nurse was awesome but due to some insurance issues we moved on)

So, how do we do it without nursing?

  • We take “night shifts” when I am responsible for any weekday night alarms or cares that need addressed and my husband is responsible for weekend nights.
  • I learned how to drive solo by taking it slow, knowing my route, keeping the suction in the passenger seat while hooked up to Uriah in the back, and learning how to listen for secretions. I only drive solo when running errands in town; I’ve never attempted a long-distance drive.
  • Create a routine that works for your family! Find ways to move your child around, give them sensory input, play, and activities! Once you find your routine life gets so much easier.
  • If your child tolerates it, try using a baby carrier! It’s super fun; the only issue is that the vent and equipment can be cumbersome and super heavy. It’s possible to buy backpack straps for your ventilator and a smaller, more portable suction.
  • Organize, organize, organize! Once you find a place for all of the medical supplies life get’s so much easier!
  • We use a small utility cart from Sam’s Club to carry all of Uriah’s home medical equipment (vent, suction, pulse ox, water bag and heater, Ambubag, and feeding pump). It’s much easier to move then the large vent stand your DME will set you up with.
  • Order a medical grade stroller from whoever supplies your therapy services. I cried when I originally ordered Uriah’s Zippy Stroller (because it looked medical and I wanted something normal for once!). But I couldn’t live without his stroller — it keeps his back aligned and in good posture, it’s super sturdy and holds all his equipment, and I can take it anywhere because the wheels are large. It is heavy and bulky but worth it! (If you cannot order a medical grade stroller then try a double stroller!)

Trust me, it will get easier. You’ll need time to find out what works best for your family.

That’s it! Please, remember that I am not a medical professional so always consult your medical team. I’m just a mama who wants to share what has made our trach life so much easier!

Please let me know how you and your little one are doing? Trach life is challenging and sometimes scary but learning from each other helps lighten the load!

Happy adventuring!

Frannie

Self-doubt in Motherhood

A sweet but vague truth has been spinning inside my mind and, to help put it all together, I’m going to try and put the thoughts into words …

That guilt you’re feeling (the mommy guilt) … it’s a lie.

The fears you have about your child’s development and people skills … they’re a lie.

Any doubt or anxiety plaguing you about your child or your ability to mother … all lies.

Being introspective, I wrestle terribly with self-doubt, fear, and guilt over my role as mother and how my little will turn out. I put value on doing well which means any sign of delay, struggle, or failure sinks me to my knees.

Currently, one struggle of mine is learning how to handle Uriah’s tantrums since he isn’t yet able to communicate with many words. As we walk through these (wonderful!) toddler years, I’m seeing a sweet independence develop within Uriah; we’re learning how to help him deal with those emotions constructively and Biblically.

When a melt down happens or Uriah is unusually fussy, the enemy whispers lies into my heart — if you were a better mom he’d be able to communicate better; if you had only spent more one-on-one time with him today he wouldn’t be throwing a fit; if you don’t respond well this time you’ll train his character poorly and he’ll always be rebellious …

I could go on and on describing the daily onslaught of lies I hear about my role as mother. I’m sure you can too.

But, sweet mama, let’s listen to truth. Let’s identify the anxious, condemning thoughts for exactly what they are — lies meant to tear you down and make you less effective as a mom.

Then, fling your burdens, gaze at Christ, and focus on the truth He has spoken over you

You are God’s workmanship created for good works that God has ordained

Mama, you have been called to be your Little’s mother. God created you to help them grow into people who love and do good. You are called, so you have been equipped.

You are a new creature in Christ which means old habits of fear, anxiety, and condemnation are over

God will help you guide your children’s character towards godliness. Because you yourself are learning and growing into the image of Christ you’ll be able to gently guide your own children.

And remember, you are never alone

God promises that “because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name. He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him.”

If you are feeling conviction about your parenting or priorities, repent and move on. But the next time you feel crippled by self-doubt, worry, or guilt remember Whose you are and Who is living in you.

You’re not alone, mama. We have been called and chosen for this role — let’s believe that truth and cling to it!

Happy weekending!

Frannie

My 3 Favorite Ways to Play with my Toddler

As a twenty-eight year old, first time mama, I’m learning a lot about the special relationship between mother and child and one of the most important life lessons I’m currently learning is how to play.

There’s something so beautiful and exciting when you see your child grasp new forms of play. Some of my forever memories will include watching Uriah motion to his favorite song or roar at me when I sneak up close.

Play is not only good for our little’s development but it makes for a happier life. Playing with your babies turns the tired, long, hard days of motherhood into days of joy, laughter, and memories.

Here are 3 of my favorite ways I play with my toddler!

Songs with hand motions

We LOVE singing songs — every morning, I start the day by turning on the bedroom light and singing our favorite morning song. The days are full of music and Uriah sings too! (Which is quite a joy and accomplishment considering most children with trachs cannot make sound). 

Some of our favorite hand motioned songs include Itsy, Bitsy Spider, Head And Shoulders, Wheels on the Bus, and Patticake.

Hide and Seek

Even though Uriah isn’t yet walking we have a fabulous time playing hide and seek! I hop down on all fours and crawl around, hiding behind furniture and around corners. Uriah loves looking for mama and the victory of finding me!

Playing Pretend

Ah, this is the best! We’re starting to enter the more advanced stages of play which include pretending. I love watching Uriah drive his cars or walk his little toy animals across the floor. It really is the best!

A friend recently gave me more ideas for pretend play and they included:

Playing with your toddler really is limitless and you don’t have to have expensive toys to make it successful! All of the ideas above basically involve time, effort, and you smiling.

(And to the special parents out there with children who may have medical issues and developmental delays — you can play too! I know it’s hard (and you have a million things to do) but your little one needs you to be their playmate as well as their caretaker, advocate, and appointment maker. They need your smiles and laughter!)

So here’s to all of my fellow mamas who choose to take the time to play. And here’s to motherhood — the snot, chores, hugs, late nights, tickles, and life lessons all rolled into a sweet and precious relationship between mother and child. Enjoy!

Frannie

What are some of your favorite play activities you do with your baby/toddler? What’s your favorite hand motion song? Leave me a comment below! I’d love to hear your thoughts!

When Your Child Looks Different

In 2016 my water unexpectedly broke at 24 weeks landing us in our local hospital. I spent the next 63 days hoping and praying that I could stay pregnant for as long as possible. Those were long, hard weeks.

When you experience PPROM (preterm premature rupture of the membrains) you never really know how much time you’ll get with your baby. There are a million fears that plague you as you rest in bed and experience a high-risk pregnancy.

Add to the fact that we had been told our son had possible facial anomalies and the fear factor rose a million degrees. I worried — what if my baby has a misshapen nose or only one eye? (These were real issues we dealt with as the ultrasound was unreliable and the diagnosis we received can cause such anomalies). What if my baby is rejected by this world? What if he will be bullied? What if … 

That was when God sent this book to my room and began teaching me.


Pumpkin Patch Blessings is written by Kim Washburn and illustrated by Jacqueline East. I love this book because each page has a corresponding Bible verse, gorgeous illustration, and precious fall-themed rhyme.

I cherish this book because it taught me that no matter our physical appearance, disability, or challenge we are just right.

The first time I read Pumpkin Patch Blessings I cried. My worried, weary-worn mama’s heart cried as I read the truest of words:

Some pumpkins are bumpy.

Some are bumpy, bruised, small, or tilted. And some babies are born differently-abled. Diagnosis’ abound, medical complexities exist, and anomalies are something many face.

But that doesn’t mean they’re not right. Every child, every person, is formed in the image of God. That includes your baby, dear mama, who may have a physical impairment. Your baby with Downs Syndrome or severe eczema or Hydrocephalus. That precious soul hasn’t been forgotten or made by mistake.

They were hand-crafted by a God Who cares beyond what we can even imagine.

He didn’t make a mistake … He just chose to make someone extra unique for His glory. Your baby isn’t forgotten — he’s just right. 

I know it’s silly that a child’s book could give me so much hope but it did. It was in that moment that I embraced my child for whoever they would be and however they would be born. So what if my child was born bumpy? We would deal with it. We would love, cherish, and support that little one as they dive into life and find their purpose.

Are you a mama of a kiddo with medical complexities? How have you dealt with the differences you notice? I love hearing from mama’s walking through the same journey! 🙂 I’d love to hear your thoughts! 

Love, blessings, and lots of coffee! 

Frannie