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

Why Nap Time Needs to be Your Time

In my early days of motherhood, nap time was a stress filled sprint — dishes, laundry, pumping, bottle washing, meal prep, medical equipment upkeep, toilet scrubbing, and bills all demanded my attention. I ran on low trying to cram my long list of to-do’s into the 3-4 hour naps Uriah took a day.

I was tired, frazzled, angst-filled, and guilt ridden because the to-do lists were never fully done.

Thankfully, my sweet, thoughtful, Mr. Fix-it sort of husband encouraged (demanded?) that I either sleep or relax during one or both of Uriah’s naps. He wasn’t keen on coming home to a freaked-out wife especially when the pressure I was feeling was my own creation.

It took several months to adjust to this new expectation — sleep (or rest) when baby rests. I’m a list-maker and relaxing and/or napping during the day made me feel unproductive, guilty, and that I was failing as a mom and wife.

Are you in the same boat? Do you struggle with feeling defeated, exhausted, and frustrated while you try to juggle motherhood and life? You are not alone, sweet mama! We have all been in your shoes. 

I think it’s important to remember that we don’t indulge in mommy time because we want to dull our exhaustion and never ending to-do lists. We enjoy mommy time because it refreshes us, equipping us to love more, feel better, and work harder. Therefore, taking time to rest is important. Mama, make nap time your time!

For me, my avenues of relaxation include reading God’s Word and connecting through prayer, catching up on my current Netflix craze, reading a favorite book, coffee, napping, being creative (blogging or crafting), decorating the house for new seasons, and having a friend for devotions and lunch. I won’t lie, I do tend to clean during nap time but that is because I enjoy cleaning and keeping up our house. But in the early days of motherhood I needed more down time so cleaning tended wait.

Tell me — what are your favorite down times? I would love to get to know you better so leave me your current Netflix craze, relaxation tip, or book? Here’s to you mama … now go take a break! 🙂 

Love and blessings, 

Frannie

To the mother in the NICU this Christmas

Advice to the mother spending Christmas in the NICU or PICU.

I see you … you’re drinking Ronald McDonald coffee you smuggled into your little one’s room sitting in the middle of IV alarms, feeding tubes, ventilator equipment, and nurses chattering in the background. You’re spending Christmas in the NICU, PICU, or surgery floor. 

I see you smiling at your baby — thankful to be with her even if she’s in a warming tank or you’re wearing those noisy isolation gowns.

Despite your smiles I know you’re struggling with tears and questions — why do we have to spend the holidays here? Why do we have to endure this?

It’s okay; I know that your burden is very real and very heavy.

Can I give you some advice as a woman who spent 281 days in the hospital with her baby?

Mama, decorate your baby’s crib. Even in the middle of the storm, you need to find ways to make these days special.

If baby can tolerate stimuli, I hope you sing her your favorite Christmas carols and dress her in the outfit you got at your baby shower.

Eat the extra cafeteria sugar cookie and take a little time to look at the Christmas lights down the street.

Give your husband an extra long kiss before he goes back to work.

Please buy a tiny Walmart tree and set it up in your Ronald McDonald apartment and enjoy the free gifts they leave hanging on your door.

This is your Christmas.

This horrible, exhausting, lonely Christmas is your Christmas and one day it will end.

One day you’ll look back at this season and wonder how the days passed so quickly.

But until then, be easy on yourself. Find ways to make these precious days count.

You need to survive these days just as much as your baby needs to survive. You need to be gentle with yourself — after all, you’ve lost so much normalcy — it’s okay for you to grieve the loss of normalcy.

It’s okay. 

Love and blessings from someone who has spent the holidays in the NICU and PICU

Frannie