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 

Small, Beautiful Dreams

AuthenticVirtue.com

We’ve had a long season waiting out fall and winter. The last 6 months have been full of unknowns, fearful nights, and anxious possibilities; I almost feel like we’ve been soldiers, working through the hard days, with our backs to the plow. Simple joys have become sweeter than ever — cozy nights and early mornings with coffee in our own home are rare treasures.

I’m also four months postpartum and I think hormones are beginning to fluctuate into a new normal; my mind is less foggy and my body is feeling better than ever. I’m so thankful for the springtime that is outside and within my heart.

I was browsing Pinterest looking for spring-time decor ideas I could use for our home when it hit me … I’m dreaming again. I’m dreaming of being home with our family (#DuncanPartyOfThree). I dream of planting flowers on the porch with Uriah in a swing beside me. My mind’s eye plays over our upcoming nights — how fun it will be to welcome Dalton home and finish dinner while he plays with our darling son. I’m dreaming of resuming weekly coffee visits with my dear coffee-loving friend while Uriah plays or naps. I ache to snuggle with my family on the couch and read, talk, and play together. To make dinners in my creamy yellow kitchen with a baby in the house and a husband who loves to come home to us every day.

There’s something so refreshing and good about dreams. I used to think that dreams needed to be big and spiritual or else they were not worthy. But these last 6 months have taught me that even the smallest dreams, done with joy and love and for the Lord, are absolutely what we need in our homes and lives. We need mothers who dream of serving their families with love. We need men who desire to work hard for their families and yearn even more for times together. It’s okay to dream about planting gardens, keeping home, and visiting with friends and reaching out to community. These hopes are small but they’re life-giving.

The beautiful thing? I remember writing a post about dreams in 2011 (I was 21 and had yet to meet Dalton). In almost every way, God has met those dreams I shared. Isn’t that beautiful? To think that I have been so blessed renews my heart with so much praise. Thank You, God, for knowing and caring for your people so well!

So, here’s to dreaming. Here’s to waiting for better days and looking forward to living life fully with those around us. Tell me … what are you dreaming about these days? Are they large and glamorous? Or quiet and gentle? I would love to hear from you! 

Love, blessings, and coffee,

Frannie

Embracing Pain // Coffee Series

Coffee With You Series

I haven’t got a lot to share lately, some days I feel like a washed up conch shell in the Caribbean, dry and bleached from the sun.

We’re having good days. Uriah is growing well. Yesterday, he tried to turn his head back and forth during tummy time; the only thing holding him up was the trach tube. He’s such a darling boy. And Dalton and I are well — it’s a hard thing being separated every week with hours between us. But we find ways to bond and eagerly await being home together soon.

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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

One Month Ago Today: Hospital Anniversary

AuthenticVirtue.com

It’s amazing to think that one month ago yesterday I spent the morning frantically changing my outfits not sure which would be best for our day out and our appointment with our midwife. I knew this wasn’t going to be the traditional check-up; we had recently gotten news of Uriah having Hydrocephalus and my midwife (being the awesome lady that she is!) had asked to continue seeing me (free of charge!) so that she could keep up with my health and be a soundboard for bad days or questions (as we’d be moving my care to a specialist).

Dalton and I drove the 30 minutes and had a hundred questions answered and someone willing to listen to our concerns. What do we do with finances? Which hospital would have the most experience? How could I best prepare for a c-section? The list was a mile long and the 20+ years of experience Susan had definitely came through. We left her home feeling hopeful and glad; we can do this. We can do this.

It was date day which means all sorts of fun in our home. We visited several Mennonite-run stores gawking at the low prices and great variety. Lunch included handmade sandwiches and trail-mix. Dalton had never been to these stops before so that always make the adventure fun. Our last stop was a shop with gorgeous pumpkins of all sizes. We were in the check-out line with a bag of brown rice and a lump of blue cheese when I had to find the restroom.

In that tiny room my water broke. I wobbled out, stood by Dalton as he finished the transaction, mentioned that I think something weird happened, and smiled when he still remembered to ask the cashier for three pumpkins. Before we hopped in the car I picked out the most adorable dwarf pumpkins and Dalton found a large, blue-ish-green specimen he loved.

One month ago yesterday, my water broke. Today is the one month anniversary of our being in the hospital. Thirty-one days of monitoring, pokes and prods, and the ever impersonal, funny question, “Have you had a bowel movement today?”

One month of unknowns, new diagnosis’, nurses, doctors, and getting to know the staff who bring me my meals and clean our room with smiling faces. One month of being more social than I have been in my life, feeling more loved by friends and family than I ever knew, and getting dressed earlier in the morning (quick, put the bra on before the nurses arrive!) than I knew routinely possible. (In normal life I get dressed after Dalton heads to work … at 9 am.) 😉

And we have been so blessed.

Since my water broke God has graciously given Uriah 32 more days to grow, thrive, and develop in my womb. Plus, with no major contractions, it looks like He may be giving us more!

Since my water broke we’ve had countless cards, goody baskets, surprise packages, promises of prayer, and financial support pour through the mail system and into our little room.

Since my water broke I’ve connected with families who have experience with Hydrocephalus and Holoprosensephaly. Amazing families who love their children without conditions or questions. People who give me hope and let me know that children with special needs are still children and worthy of every ounce of love we can give. People with children who defy doctor’s prognosis’ and expectations.

Since my water broke I’ve lived in two different hospital rooms; one for labor and delivery and the other for maternity. I’ve met so many people. Dr. Mohammed, Letensie from Eritrea, Africa, and Rita from India. Not to mention the nurses from more local areas. They all have a story to share; one had an arranged marriage which is 35 years strong and experience serving in her once war-torn country, one raises alpacas and rescues puppies she find on the street. Another invites me to the Christian church in Columbia when I’m able. Then there’s the sweetest housekeeper who raises horses and asks me questions about my Christian walk no one has ever asked before.

Since my water broke I’ve drank more water than ever before. In an hour I down 30 ounces or more. My complexion should be beaming before this is over! 😉

Since my water broke I’ve had more people see me in my jammies than I ever thought possible. But these are the people who stop by and pour their love on our family. These are the folk who take time out of their day to sit on an uncomfortable couch and ask about Uriah and his latest news.

Since my water broke Dalton has made this hospital his home. Our days have developed a routine. He heads to work early to beat the traffic and change into his uniform at home, works his 10 hour shift, drives home for a quick shower and picks up the mail and fresh laundry, then heads back to the hospital by 8 to 8:30. He pulls “Lawrence” close to my bed and we watch “Whose Line” reruns while we eat dinner. Then, he helps set up the monitoring equipment so we can hear Uriah’s heartbeat; most of the nurses are impressed with his ability to work the machinery and how much easier he makes their job. I’m just grateful because I like him snuggled so close to me. Afterwards, I get my heparin shot and we both fall asleep faster than I think possible for a bed rest patient and her easily-woken husband. He’s does this without complaint or grunt. Our weekends are full of quiet, relaxing times full of wheel chair rides outside, a special dinner, movies, and Minecraft.

Since my water broke I’ve gotten to lean closer to the Lord than ever before. Oh, I’ve had times where I’ve leaned into the Lord but there is something urgent, something necessary about drawing close to the Lord in the unknown. Since my water broke my God has taught me:

That He does, in fact, answer prayer. 

That His Word really can bring comfort and healing to the soul. 

That He is, indeed, very present. As in, He is in this room with me. 

That He cares about every need, the big and small, in our lives. 

That He does carry the pregnant woman and child like a Shepherd carries His sheep. 

That sometimes praising Him is the only way to defeat anxiety and fear. 

It’s been amazing how fast a month can pass by. When the doctor first recommended my staying here for 10 weeks I nearly choked. But time passes pleasantly, I am able to stay busy, and I’ve gotten the perfect time to bound with little Uriah before he even enters the world. Plus, this has taught me how to best be with people when I have nothing to offer them. And I’ve discovered, again, that my and Dalton’s marriage and friendship can run so much deeper; we just have to be purposeful.

Thank You, LORD, for this good month. Thank You for carrying us, like small, fragile sheep, through the wilderness. Thank You for being with us every step of the way. You are trustworthy, faithful, and full of mercy. “I will hope continually, and will yet praise thee more and more. My mouth will show forth Thy righteousness and Thy salvation all the day; for I know not the numbers thereof. I will go in the strength of the LORD God …” (Ps. 71:14,16a)

God is so very good, my friends.

Love, blessings, and coffee,

Frannie