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

Look Who Is Standing!

Sweet people … I can’t quite tell you the thrill and sob-filled joy and delight which accompanies watching your child overcome. This week, Uriah started standing. He’s initiating standing and supporting himself for seconds at a time. He still needs support but wow

Wow

I don’t think we can appreciate how much strength, balance, mental concentration, and work goes into growing up. Babies without delays roll over, crawl, stand, walk, and eat without any fuss; babies with delay require months (or years) of therapies, special equipment and exercises, occasional medications to strengthen or loosen muscles, personalized shoes and braces, and hours of repetitive play. 

These children are warriors! Hard-working, adventurous, striving little warriors eager to do life their way. 

And how exciting when we see their sweat, tears, and work pay off! 

Love from a very excited mama, 

Frannie

Baby Update: 37 Days Old and Growing!

 

Hello, sweet people!

Uriah is now 37 days old! What a beautiful thing it has been to have him in our lives! There have been several exciting blessings over the last few weeks and I’ll share them below!

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Here I am holding Uriah for the first time when he was 3 weeks old. What a special, delightful moment. So special!

Here we are at 28 days old when Uriah got his breathing tube out! This was a glorious day! Just the day before I had asked the doctor for a best case scenario of when the tube would come out and she had replied a week. The next morning we walked in to him being extubated! 😀 Since then I have heard him make lots of grunts and squeaks and one cry (he couldn’t make sounds while intubated). (Isn’t this picture adorable! He makes the cutest face when he looks at us! His forehead wrinkles are to die for!)

Uriah celebrated his first Christmas wearing clothes for the very first time! How stylish! 😉

Eyes wide open! We love it when our little boy is wake; he’s so fun! He is starting to wake up before meal times and occasionally sucks on his hand and thumb! He is eating 68 mils every three hours! Woohoo!!

Some other exciting news:

  • Uriah is no longer intubated or on CPAP; his breathing support is simply a flowing, humidified oxygen which is being weaned as he is able to tolerate it
  • He is holding his own temperature and may be moved to a real crib soon!
  • A speech therapist has begun meeting Uriah as we begin “swallow therapy.” Right now he gets all of his meals through an NG tube but we dip a paci into milk and let him practice sucking (which he seems to really like!). We hope to get a swallow study done this week which will tell us how well he is able to suck, swallow, and breath.
  • Uriah is more active than ever! This is day 5 or 6 of being totally morphine free (required for his surgeries) and we really think he enjoys not being sedated. And we sure love watching him move, stretch, and interact more often!
  • Last week, Uriah had a pretty serious blood acid issue which mystified the doctors. He wasn’t responding to a large dose of medicine they had given him to correct the high levels which led the doctors to believe he had a metabolic disorder; ultrasounds were taken of his kidneys and liver while genetics were requested. Yet, none of the specialists could find a reason for him to be referred to them; his kidneys and liver did not seem to be involved and the geneticist felt he didn’t have the right symptoms for a gene issue. The high dose of ineffective medicine upset his tummy and led to him being dehydrated so a new medicine was chosen. We thank the Lord that he began to show improvement and now his levels have remained normal for the last 3 days! We still do not know what caused the issue but we are blessed it has disappeared!
  • Uriah has the sweetest personality! He is so content, patient, interested, and sweet. He rarely cries even during hard things like heel pricks for blood draws. He works really hard at focusing on our faces and lifts his eyebrows when he is interested in something.
  • Our little 5 weeker (who should technically still be in my tummy at 38 weeks!) is now 6 pounds and a few ounces.
  • Uriah’s shunt seems to be working really well. The incision site has healed nicely and his head has stabilized, not loosing fluid too fast or too slow.

Thank you for all of the love, prayers, and sweet words you have sent to us! We are blessed and loved. God is so good!

I want to start blogging again but, to be honest, I have no idea what to write. I feel like I’m still in survival mode and all I can think about is Uriah, snuggling with Dalton, being with my family, going home, and coffee. Oh, and sweets. I’ve got a huge addiction to sweets I’m trying to master. And also Netflix. I’m sort of addicted to Call the Midwives and Lost again. I keep feeling like I have to figure out who I am … I’m a mom now but I’m not able to do all the mommy stuff one would normally do. I’m not busy changing diapers and breastfeeding; I have to wait to do all of that. I’m too tired to think spiritual thoughts other than mere whispers to the Lord. I haven’t made a homemade dinner in ages and haven’t been home since my water broke in September. Maybe I’m going through my mid-life crisis as I am turning 27 in a few weeks and am realizing that I am closer to 30 than 20. The beautiful thing is that it’s okay that I am changing; I just need to be able to go with the flow. 😉

Anyway, I love and appreciate each of you. Thank you for following our journey and blessing us along the way. God is a good, good Father and we have seen Him work so much good in our lives through this difficult time.

Love, blessings, and coffee,

Frannie

Resting after Surgery // Our NICU Journey

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It’s a quiet, early morning at our Ronald McDonald House. I’ve found my way into the large kitchen and brewed a pot of hot coffee. This is my quiet time to reflect on all that life has involved. I’m sitting by the lumpy, lit Christmas tree reading Psalms 9 by the twinkling lights.

We’ve made it. Uriah is 19 days old today and it feels like we’ve made it. His shunt, meant to drain the build up of cerebral fluid, was successfully placed yesterday afternoon and already his head has decreased in size by .9 . I’ve been told that children who are old enough to speak often say their heads feel better the day of surgery. I imagine Uriah may be feeling some of the benefits of the decreased pressure. (This makes my mommy-heart want to weep with joy!)

We’ve made it. We’ve walked through premature rupture of membranes, bed rest, infection, a placental tear, and a labor/c-section that wasn’t typical. We’ve made it through 19 days of intubation, iv lines, a TE Fistula surgery, a newly placed NG feeding tube, and now, finally, the shunt placement.

And all I want to do in my quiet, coffee-filled, Christmas tree lit spare moment is cry and laugh and sing and cry some more.

God has been amazingly, wonderfully here and good. “I will praise thee, O LORD, with my whole heart; I will show forth all thy marvelous works. I will be glad and rejoice in thee; I will sing praise unto thy name, O thou most High. When my enemies are turned back, they shall fall and perish at they presence. For thou hast maintained my right and my cause …” Psalms 9 

We still have a journey ahead of us. Shunts fail and get infected; they need to be replaced and sometimes frequently. Uriah’s still recovering from pneumonia-like illness and his little right lung is still healing from being mucous-filled and occasionally collapses. We have no idea what amount of damage was caused by the pressure build-up and we have no idea how much his brain will “fluff”.” (Although we have very high hopes and have been given a good prognosis). And along with the recovery from the CF build-up our little one may face difficulties reaching milestones since he was born early.

But all of that can wait. All of those unknowns can be faced one step at a time. Because today our little boy has less pressure in his head than ever before. Today, our little one has conquered his last foreseen surgery (although realistically there may be more). But for today, we’ve made it. Today we get to focus purely on recovery and growth and feedings and milestones and being weaned from the ventilator. Today, the sun is shining brighter than it has all week and my heart feels lighter than it has in a long while.

Thank You, Father, for caring for us. Thank You for giving us such a brave, strong, sweet little boy. Thank You for his Hydrocephalus and for his pneumonia and for his TE Fistula. They are things I wish I could take away and never make him face but they are things You have been Victor and Healer in and You are wise in all that You send to us. Thank You for caring for us through other people; thank You for the financial gifts, encouraging cards, and sweet messages and visits you’ve sent us through friends and family and strangers. We have never been without and we have never seen You fail and I trust You in this journey.  

What journey are you facing today? Are you at the beginning, middle, or end? Have you seen God carry you through or are you in a waiting phase? Comment below — I’d love to be able to pray for you.

Love, blessings, and coffee (and a chocolate cupcake) 😉 ,

Frannie

8 Days Old and So Adorable

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We’re pretty crazy about this Uriah Boy. He’s such a special addition to our family and I am in awe at the gift God has given! (Aren’t these pictures so fun!? Someone sweet took them and left them by Uriah’s bed; they’re so much better than my phone pictures!)

Uriah’s TE Fistula surgery went well yesterday. It was a tense day for Mommy as the surgery was considered high risk due to his breathing patterns and young age. But God carried us through! The surgeon was very pleased with the results and we’re hoping that after a few tests are down (to make sure there are no leaks) that Uriah will be finally able to eat real food! (He’s been on a nutritional IV formula so far).

I’m excited because his recovery means we are taking steps to getting rid of the ventilator. I’m thankful for the extra help but the plastic tubes naturally make mucus which can cause breathing problems!

We are extra thankful because Uriah’s blood tests are have been improving. His CO2 levels after the surgery were dangerously high and have taken several hours to lower. But today they appeared much better! He’s also being treated for pneumonia (although it is only a suspicion that he has it) because some of his tummy acid was found in his trachea during the surgery. (This happened because of the TE Fistula). Hopefully, he will avoid a full blown infection!

Today I am thankful because I got to kiss my sweet little boy for the first time! My c-section incision has been healing wonderfully but I haven’t been able to bend. Today I was able to bend forward without pain and it was so sweet being able to kiss my son for the first time. Also, we got into the Ronald McDonald House today! It’s so nice to have a permanent place to call home till Uriah is discharged (we’re hoping around his original due date in January).

Tomorrow I plan to spend the day reading books to Uriah. He’s still pretty sleepy from his surgery but that doesn’t matter! It will still be special to read and let him hear my voice.

Thank you all for your prayers. We SO appreciate them!! God is carrying all of us through — Thank You, LORD, for being such a good Savior and Maker!!

Love, blessings, and coffee,

Frannie