Free Printables for Private Home Nursing Binders

Having medically complex kiddos is an amazing, unique responsibility that has ordinary parents thinking about and doing un-ordinary things. One of those unique aspects is private, home nursing.

Good, bad, or indifferent, home nursing is tricky business. I created these free Nursing Communication Book labels to help families communicate and interact better with the nurses working in their home. Each file has nine 8.5 x 11 inch pages that you can print, three-hole punch, and place in a binder. Then, get creative by making your binder unique to your family by writing or typing your family’s specific information.

 

Having home nursing can be a huge blessing but it can also be a huge burden. I believe having a Nursing Communication Book is a simple, easy way to keep everyone on the same page. Have a single spot for house rules, emergency plans, and contact information will eliminate confusion and excuses for irresponsible behavior.

Want your relationship with your nursing staff to be excellent? I highly recommend reading Charrisse Montgomery’s book Home Care CEO. I read this quick, easy-to-read book while we were still in the NICU and got so many excellent ideas for managing the medical side of my son’s home care.

For the blue file click on this Dropbox link and download it. For the purple file follow this Dropbox link. 🙂 Please comment below if you have any questions. I’m sorry I cannot currently write the specifics behind each label; it would be impossible to write a welcome page or a list of house rules that each family could use. But hopefully, these simple labels will inspire you and bring you one step closer to a respectful, productive relationship with the nursing staff working in your home.

This is an example of my notebook. 🙂 (Click on the pictures for a larger view).

With love, blessings, and coffee,

Frannie

Our Family’s Fall Time Bucket List

Fall is finally approaching our corner of the Midwest and we are already enjoying every sunny yet perfectly chilled day, changing leaves, and blossoming golden rod. Now that I don’t break into a soggy, soaking sweat each time I step outside, Uriah and I have been enjoying one mile walks to our down town center. We’ve had the best of times.

As wonderful as fall is we’re enjoying an even greater blessing, Uriah’s good health. With no sickness hanging around I’m planning a few fun fall-themed activities. After all, this will be the first fall he is well enough to enjoy! 🙂

With a little bit of planning I think we can conquer the bucket list I made above. Since traveling with Uriah currently means traveling with several pieces of equipment and requires two drivers at all times I want to keep things simple to avoid burnout and frustration. I’ll also be following this cute tutorial for the hand print banner! 

Of course, Uriah won’t be able to do all these things; he’s not old enough or ready to drink hot chocolate. But he can watch Momma mix the drinks up, play with marshmallows, and smell the spices that are required for all the deliciousness. And playing in a creek merely means dipping his toes into the running water since full swimming is a little out of his league. But that’s the beauty of this list; it is adaptable and flexible to your own special family and needs.

Follow this Dropbox link and download your own adorable Fall Favorite (free!) printable. 🙂

With love, blessings, and coffee,

Frannie

Parenting is Hard and Holy Work

We’ve officially been home from the NICU for 74 days. Having Uriah safe and in our own little nest has been more exciting and more fun than ever expected. I love having him to kiss and hold and read to at any moment of the day. I love watching his developing milestones take place on my own living room floor. And I adore the moments I catch him smiling because he’s happy in his home.

But motherhood is a lot more than I ever thought it would be. About once a week I find myself having a mini-anxiety session where I ponder the question all mothers do … am I doing enough? On top of that, I fancy having a child who requires special cares multiplies our fear that we are failing our little people.

Eventually, that worry snowballs into a once a month cry-fest where I turn to my husband’s strong chest and sob tears that have to come out. Stuttering cries fill our small bedroom because what if Uriah doesn’t develop properly because of me? Because, as all special need parents know, playtime isn’t just playtime any more; it’s physical and occupational therapy. Eating isn’t about getting your baby to latch or getting them to like all their food groups; it’s about watching for silent aspiration and pneumonia. And every time you run out of the house for thirty seconds to drop the garbage into the bin you run back in because what if your baby’s ventilator disconnected from the trach. It’s rereading the Resuscitation Instructions once a week so you’re as prepared as possible for something to go wrong with your medically complex child. It’s greedily counting the medical supplies shipped to your home once a month and then going to the store to buy all the regular things your ordinary yet not so ordinary baby needs.

It’s so much and sometimes I feel like I don’t measure up.

Mom, if you ever feel this way, I know. I feel all the feels with you. Parenting is responsibility. And special cares or not, it is hard.

The beautiful thing is that this hard thing we’re doing? It’s a God thing. Children are gifts from God; they’re not add-ons to your already full life. They’re not the next step in life. And they are never mistakes. God’s Word makes it clear that our babies are fearfully and wonderfully made and rewards. And if God is in it it is holy. And all that hardness? It’s meant to make you more holy.

So, that baby who is fussing, or that toddler who is out of control, or that teenager who lives a busy and sometimes wildly confusing life, they’re all God things. (He’s also there for all the one’s taking care of an ailing spouse or family member.) It’s holy, hard work but that means God will be in it.

I cannot tell you the times I have seen God come in an lift my weary heart. He did it from the very beginning, during my misdiagnosed miscarriage, through the very scary first trimester, when my water broke at 24 weeks, during my 63 days on hospitalized bed rest, and during the 7 months Uriah lived in the NICU. God showed up and personally walked us through the hardest season we have endured.

And He’s here. God is still walking me through the nights when I feel like I simply didn’t measure up. He’s here, ready to bear my burden and give me grace, on the days when I’m afraid I didn’t do enough.

He’s here and He is more than enough. 

Sweet friend, I know. I know that this blog post isn’t going to fix the anxiety-filled nights or worried-filled days. I know that you can enter the morning feeling like Wonder Woman and go to bed feeling like a stinking pile of failure.

Despite how you feel, I want to encourage you to embrace the truth — that this hard work you’re doing? God will walk you through it if you let Him. And He will let the hard work be holy work if we let Him work in us.

I’d love to hear about your experiences of parenthood? Tell me your stories! I love hearing from you? 

Love, blessings, and coffee,

Frannie

Catching Up with You // Day 179 in the NICU

Keeping in touch @ AuthenticVirtue.com

Hello, sweet people. Ages have past since the last real update on Uriah; in fact, the last time I shared about our little guy’s progress he was only 3 1/2 months old. Now, he is two days away from 6 months. Let me share with you some of the amazing, hard, wonderful things we’ve been through over the last 5 months!

We have been in the NICU a total of 179 days. We’ve seen our little guy go through SO much and have been amazed by the goodness of God in his life.

Uriah has finally gotten used to his trach. The tracheotomy felt like a last resort but it has ended up being one of the best decisions we could have made. Now that he is no longer on the ventilator and breathing tube Uriah has so much freedom! I’m able to pick him up, play with him, do tummy time and roll around on the floor.

Speaking of tummy time, Uriah loves it! He loves to hold his head up on his own and is beginning to roll over! (Which is a lot for someone with a head in the 99th percentile!) 😀 He loves to stroke his hair, suck on his hands, and especially likes to bang his toys as hard as he can.

He’s begun teething and drools without end. The sad thing about having a trach is that it can keep you from using your voice; the doctors had told me not to expect to hear when Uriah cries, coos, or laughs. And while I cannot hear him in those traditional ways I was surprised and thrilled when he began making sounds around his trach. It’s a lot of gurgling breathing sounds but I’m positive he makes most of the noises on purpose — after all, he wants to talk and knows this is the only way he can! This morning I mimicked his gurgles and he got the funniest look on his face … I guess I was speaking his language!

Right now, we are hoping to go home in 6 to 8 weeks. Uriah has still not gotten to eat by mouth because it was discovered that his TE Fistula had reconnected and there was a small leak from his esophagus into his trachea and lungs. He has had two small procedures where they cauterize and place glue over the connection hoping that this will seal up the leak.

Hopefully, he will have a Swallow Study done next week and, if there is no leak, we can begin the process of eating! For a baby who is 6 months old and has never been able to eat by mouth this will be a ginormous task. But, we believe God is incredibly good and kind and that His ultimate will is best. Instead of being anxious over this step we’re finding ways to be thankful that we have even gotten this far!

This is a fun stage to be entering. As we think about going home in the next two months I’ve begun talking with private nursing agencies and had an inspector come to our home to ensure it would meet Uriah’s equipment needs. Sometimes, I am overwhelmed when I think about how different life will be — nighttime nurses in our home, carrying an “army’s worth” of supplies when we leave the home (or even move to a different room), and calling the electric company to put us on the “priority list” in case of a power outage are just a few things to consider.

But then I watch my baby boy play. This is a living, thriving, happy baby who was given so little hope in the beginning. This is the baby who watches me walk around his bed even though we were told he was blind. This is the baby who loves to listen to music even though we were told he was likely deaf. And this is the miracle who is thriving even though we were told there was too much damage to even try the necessary procedure. Being Uriah’s mom is a role I absolutely love and it is sweet.

Please keep lifting our family up in prayers as we near the finish of our NICU season. Some specific requests are:

  • For Uriah’s Swallow Study to be successful and the TE Fistula repaired so that we can begin eating by mouth
  • For Uriah to have the drive and want to to eat by mouth
  • For his current case of tracheitis (bacteria in his trach) to be controlled and subdued
  • For his little, upcoming teeth 🙂
  • For Dalton and I to have renewed joy and strength … I’ll tell ya, being separated most of the week for several months is not fun, not easy, and not enjoyable! But, I have to brag on Dalton! Every week, he finds ways to bless and encourage me. He is always finding ways to bring me refreshment even though he is the one working and alone all week. Thank You, Lord God, for giving me such a man!
  • For God’s will concerning private nursing. We are required to have someone awake with Uriah at all times because of his trach so we are applying for night nursing to help as we can’t be awake all the time and live normal, healthy, thriving lives.

And most importantly, thank you for all the love and prayers you have given us. There are days when I still can’t believe I’m not at home … it feels almost surreal to be away from home this long. But you have made this time not only bearable but time to enjoy, grow, and be blessed in. We thank God for you!

With love, blessings, and coffee,

Frannie 

Making Memories in the NICU

Crafting good moments in the NICU can be hard. When pregnant you prepare for all the normal, beautiful things a healthy pregnancy brings. You decorate the nursery, stock up on diapers, and prepare your home for baby’s arrival. Special memories happen every moment — from the time you bring your little one home every moment is a new memory and something you’ll cherish forever.

But what happens when you don’t get to bring your baby home? What if days, weeks, and months trickle by while your little one fights for life in the hospital? For most families, making memories at home just happens but for many NICU parents, memories feel a lot more like PTSD.

We’ve been in the NICU for (almost) 5 months. It wasn’t until Uriah was 2 months old that I realized I had been unconsciously holding back on making memories. Thoughts like, I’ll be a real mom when I am solely in charge of my Uriah’s care and we’ll do special things when we’re out of this place in back in the real world silently affected my behavior.

I mean, how do you make memories when you can’t even pick up your baby because he’s in an incubator, with a breathing tube, and a picc line iv? How do you create special moments when you’re always surrounded by staff, always hearing loud alarms, and always afraid for your little one’s life? How do you make the moments between morphine drips, infections, and surgeries fun?

Sweet parent, if you’re in a similar situation, it can feel trivial and too hard to focus on making memories with your little one. You may feel like waiting to get home before you start creating special moments; you may even be too afraid to do special things with your child until you know, for sure, if he or she is even coming home.

I know. I’ve been there.

But, at some point in your NICU-parent career, you’ll wake up and realize that this is your story. This moment in the NICU is as much a part of your motherhood as anything to come. Your baby will never again be a baby. He will grow up, one month at a time, and you’ll look back and wonder where your tiny, darling preemie went.

I know. I’m there. (I mean, how did I become a parent to a fourteen pound, babbling baby boy?)

So, how do NICU parents make special memories when life is anything but perfect?

With intention. It’s very easy to let hours slip by when you spend most of your time in a hospital. Right now, my life revolves around pumping, arriving at the hospital, grabbing a cup of coffee, meeting with doctors, playing with Uriah, physical therapy, changing diapers, putting Uriah to bed, pumping, eating lunch, giving Uriah a bath, trach tie changes, playtime and therapy, naptime, pumping, and going back to the Ronald McDonald House.

When I am not purposeful, those hours fly by. Sometimes, I literally cannot remember what kept me busy all day and, for the life of me, I can’t figure out why I am so tired.

I am purposing to be intentional. I’m going to slow down. Here’s to really playing with my little boy instead of worrying about whether or not we’re meeting milestones. Here’s to reading him his favorite book and taking the time to really give Dr. Seuss the drama he deserves. Here’s to holding the pacifier patiently, changing the diapers endlessly, and making trach changes as fun as they can be.

Because, Mom, this is your moment. This is your motherhood. And you’ll never get these days back. Here are some specific ways to make memories when your child is in the NICU:

  • Read dramatically to your child … and watch their facial expressions
  • Forget milestones … celebrate every victory
  • Really take in your child … admire her gummy grin, cherish his sparkling eyes, enjoy her tiny, perfect feet
  • Take pictures … really good ones where you see more of the baby than wires, if possible
  • Sing nursery rhymes … do the hand motions of Itsy Bitsy Spider and Patty Cake
  • Learn how to maneuver around the tubes and wires so you can pick up your little one yourself … or enjoy simply resting your hands on your preemie and feeling they’re warmth
  • Decorate your baby’s area … make a Likes and Dislikes poster for the staff … scrapbook pictures … draw a nametag and hang it on baby’s incubator
  • Take time to meet other NICU parents … really listen to their stories … really pray for them when you think of their stories
  • Do things for your baby with your spouse, if possible
  • Offer to bring your nurse a glass of ice water … or a $.25 Laffy Taffy
  • Create a schedule your baby can get used to around the staff’s schedule
  • Forget milestones (oh, did I say that already? That’s because this is probably the most important thing you can do for yourself and your baby).

These are just a few ideas that have helped us make memories. Yes, I can’t wait to get home. But more than that, I want to make these days special for Uriah. I want to be able to look back on these days and say, Yea, those days were hard but we sure had a few good moments, didn’t we? 

Talking about making the most of our moments why don’t you hop over to my new friend Stephanie’s blog, The Vintage Modern Wife. She has a brilliant, beautiful post about creating a sensory filled Easter for her little one. I think she has some EXCELLENT ideas for making this Easter special, especially if you have a little on in the hospital.

NICU parents, what are some ways you have made special memories while in the hospital? Are there any budget-friendly, space-friendly ideas you could share with us? I’d love to hear!

Love, blessings, and coffee,

Frannie