This Time Last Year: Learning About Hydrocephalus

September 8th, 2016 I drove to our high-risk specialist for a twenty-two week check up on Uriah. I remember feeling pretty good about our appointment; it had been at least four weeks since my last emergency room visit where I lost blood and thought, for the third or fourth time, I was miscarrying. Although, to be honest, we had had so many difficult issues in my pregnancy that getting an ultrasound always made me feel slightly uneasy — like, today might be the day I again learn something is wrong.

But we were doing okay; my subchorionic hematomas were disappearing, my misdiagnosed miscarriage was beginning to be a past memory, and we had a closet full of little girl dresses for our daughter. (Since we had been told it was a girl a few weeks prior).

I settled onto the little recliner and let the technician wave her ultrasound wand over my growing belly; we chatted but I could tell something was wrong. Small tears trickled down her face as she tried to remain professional. A sinking feeling settled in but we pushed through the exam. When I told her we we’re expecting a girl and asked for a confirmation I got to experience one of those funny moments when I’m told, “No, it’s a boy; see here?” I laughed to myself because, why shouldn’t the gender be wrong; it had already been a chaotic first pregnancy why not add a little comedy to it? I imagined naming him Isaac for laughter since it was too silly not to laugh.

She left and it took an abnormally long time for our doctor to appear. Again, the sinking feeling filled me. I had seen tears, hadn’t I? Eventually, the specialist arrived and, by the look of his face, I knew I could ask confidently, “Something’s wrong, isn’t it?” He asked me how knew and I commented on his very sweet but teary-eyed tech. He nodded, I asked to get off the recliner and sit in a real chair. Bad news shouldn’t be received while reclining.

Your little boy has a condition called Hydrocephalus. His brain is being compressed. His femurs and thigh bones are measuring short. This often goes hand-in-hand with trisomies. Like Down Syndrome? Yes, or Trisomy 13 or 18; both are incompatible with life. You’re son will need to be born in a specialized NICU by c-section; I recommended delivering early in a hospital in St. Louis. 

What do we do now?

There a number of tests we could take to rule out the possibilities of trisomies but I’ll be honest, they run a risk to the baby and premature labor. I won’t even offer a termination because I think you won’t accept one. You mean an abortion? No, we wouldn’t considerate that. We’ll need to do weekly ultrasounds to keep track of the baby’s head circumference and growth.

I’m not really sure what happened after that; I know I thanked him for his kindness and confidence in our God Who believed all life deserved to be born. I also told him to thank the teary-eyed tech for being so kind.

I scheduled the next appointment, walked to the car, unpeeled a banana and began to cry over that messy breakfast. I cried and I cried. I wanted to call Dalton but he was working and I hate giving him bad news over the phone. I wanted to call Mom but knew I wanted to talk to Dalton before anyone else. So, I called my wonderful friend and husband. The good news is that you’re having a son. The bad news is that there are some problems with his brain and bones. Maybe a Trisomy like Down Syndrome. Can you come home?

The day proceeded slowly; I cried while I drove home. Cried over how unfair it was to receive more bad news. Tears over the thought that my precious baby could be suffering that moment. Fear of the c-section and grief of losing the home birth we wanted. Tears because what did this mean for our little boy? What did a compressed brain mean for his future? What did a Trisomy mean? Could we really be one of those families who experience a child born incompatible with life?

The rest of the afternoon was spent at home with Dalton, who is an amazing comforter. I remember our land-lord showing up to do some painting in the house and Dalton asking him to come back later, we just got some bad news, he said. We chuckled over the gender mix up and ate ice cream, exhaustion filling our hearts.

I talked with our parents; telling them about the dubious medical diagnosis. Mom and Dad worked with some wonderful friends who had a precious daughter with the same diagnosis. They quickly called them and received the amazing love and understanding and practical advice you get from someone who has been in your shoes. Mom and Dad called back and told me about the connection and repeated the hope our friends had given.

And then I went to bed. The day had ended and we had survived. This precious baby boy with difficulties was still growing, still miraculous, and still ours. I’d spend the next few weeks re-writing my new birth plan to include a c-section and NICU two hours away; I’d google Hydrocephalus and then wish I hadn’t. I’d feel moments of pity and grief. I would write this blog post and we would begin to receive countless prayers and love from our friends and family. I would connect with a private Facebook group specifically for those with Hydrocephalus and I would be embraced by an amazing community. I would write this post 8 days after our ultrasound sharing all the blessings God was sending our way.

Little did I know my water would break in 10 days.

It’s amazing to be one year from this event; it feels like yesterday. Maybe that’s because our live’s went on a 9 month pause?

Yet, if given the chance, I would change none of it. Yes, it hurts. Yes, it’s hard. Yes, I still cringe when I think of the memories. And yes, I wish I could make easier on Uriah.

But look at this precious baby. Look at what God has done in his little life. Look at the joy, the fun, the sweetness, and the miracles he has given us. 

I imagine that this time next year the bad memories will hurt a little less and the new ones, the memories we make this year, will be closer to the surface. I want Uriah’s first library visit to be the memory I think of this time next year. I want to remember the friends we’ve grown closer too and the family too. I want to reflect on how adorable and healthy Uriah is and how blessed we are.

I hope my reflecting over the past isn’t turning into a broken record for you, sweet readers. I process life through words and writing and, to be honest, I don’t know if I’ll ever get over the hurt broken dreams bring. So I’m sorry if my reflection bores you; but this is how I work through life’s experiences. This is how I ponder God’s hand and how I move on from the pain and rejoice in the midst of it. I admit I’m still learning to get over the hurts and difficulties  but I thank God for His perfect will and plan for our lives — including all of the pain He’s helped us walk through.

With love, blessings, and coffee, 

Frannie

Welcome Home // The End of Our 218 Days in the NICU

Hello, sweet, sweet peoples!

It has been far too long. There’s been a lot going on (not to mention a laptop needing a repair shop). Most wonderfully, we are home! After 63 days of hospitalized bedrest and 218 days in the NICU (281 all together!) the Duncan #partyof3 finally made it home.

We were discharged from St. Louis Children’s Hospital June 26th; we’ve been home a grand total of 42 days. It is absolutely glorious! Forty-two days to begin adjusting to having a baby at home. Forty-two mornings waking up to being in the same house, in our own beds, and forty-two nights of baths, snuggling, and enjoying every moment together at last.

Here are some pictures of our days together! (Click on them for a larger view) 🙂

We are so thankful to be home. Uriah’s life has been a full adventure and God has been exceedingly good to us! Sometimes, as I rock Uriah to sleep, I ponder the events of the last 10 months. From the moment my water broke at 24 weeks (and even beyond that!) all the way to Uriah being born and having multiple surgeries, close calls, and the difficulties living 2 hours way from home God has been present, loving us and preparing us every step of the way.

There is still a lot of growth and development we are working on but Uriah is making amazing progress! He just weaned off his oxygen (woohoo!) and we will begin discussing ventilator weans at his next appointment. His g-button has healed nicely and we do weekly tastings of thickened milk; sadly, it’s still not safe for him to eat by mouth (due to silent aspiration) but, Lord willing, we will get there. These things just take time, patience, and hard work. 🙂 His VP shunt seems to be working perfectly! We had his 6 month shunt anniversary in May; it’s often said that if a shunt lasts 6 months it is a good possibility it will work for quite a time. Below is a comparison of his first MRI (on the far right) taken at birth, to an MRI done after the shunt was placed (middle), and the most current MRI (far left). See the amazing difference in those white areas of the brain? That is the brain’s ventricles shrinking as the brain expands and the excess cerebral fluid drains away. What a blessing!

As far as personality and development Uriah is absolutely wonderful! He has the sweetest, funnest personality ever. He loves to chew on everything, stick his tongue on Mom and Dad when we kiss him, talk around his trach, roll on the floor, play with his toys, and listen to music and Mommy read. He loves snuggling with his bear-bear (a grey, silky bear and blanket) before bed and then he sleeps a full 8 hours (usually). He’s always happy to wake up and start the day — a true beam of sunshine in our lives!

 

Some things we are looking forward to? Starting weekly physical therapy visits! 🙂 Uriah loves to roll around but before he can start crawling he needs more muscle development in his neck, core, and arms and tummy time plus therapy will really help! We’re also excited for his highchair which should be arriving this week! I can’t wait for him to have a special place to sit with a tray! And, one day, we’ll feel more comfortable taking Uriah on trips so we can go visit our family. That will be exciting!

There’s so much more to share but I’ll hold off till a later day; I can’t wait to begin writing again. Being home is, for me, such a special time and I adore the mundane, daily tasks I get to accomplish. Cooking, baking, decorating, cleaning … it all has a new meaning after being away since last September. 🙂 I’m sure one day I’ll grow tired of the never-ending tasks but for now I savor them and squeeze them in between the moments of play, snuggling, and work with Uriah.

In the mean time, thank you all for your love, prayers, and friendship. I so appreciate your being patient with my lack of commenting. Our laptop is currently out of commission but once repaired I hope to be back in this community again. Until then!

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

How Will You Inspire Your Year?

What word will power you through 2017?

There’s something delicious about writing those first few words of a story. You can never quite tell where they will take you. – Miss Potter

There is something delicious about new things. New books, new houses, new clothes — they all carry an innate specialness. Even more importantly, new years are something to be look forward to.

It’s time for me to begin planning for the year ahead. Last year I really benefited from choosing a word and making it the theme of the year. 2016 was the year I chose delight.

This year, my theme for 2017 is the word season.

I’m in a time of life where I need to remember our lives are made up of seasons. In the last 135 days I’ve been home twice. My sweet 2 month old is in the NICU and some days I forget that real life is lived outside hospital walls. It’s important for me to remember that this is only a season of life; a short paragraph in our story.

The beautiful thing about seasons is that they are each unique and require different attitudes and actions from us. During spring we prepare gardens, clean homes, and refresh closets while summer days find us sweating in the sun; autumn is full of harvest and winter rest, lit fires, and warm blankets.

Our live’s seasons are also unique and require different attitudes and actions. I don’t want to waste these days dreaming of our homecoming or dreading the hours spent in the hospital. I want this season of life to count for something.

So, what does this mean practically?

I want to find ways to make the most of our time in the NICU.

I want to pursue my husband and marriage even while this season of life has us apart most of the week. I also want to find courage and creativity in seasoning our marriage with more romance and encouraging other women to do the same. (You know, spice things up?) 😉

I want to find creative ways to tell our story and God’s goodness throughout this entire season.

I want to invest in people.

I want to organize and declutter our home now so that when Uriah comes home I can focus (more easily) on him than on the stuff around me.

I want to get to know my Lord better during this season of whispered prayers, exhaustion, stress, and rough introduction to motherhood.

I want to sow now, so that later I may reap a good harvest. 

What’s your theme for 2017? Do you make resolutions or are you a word sort of person? Are you as surprised by February’s arrival as I am? 🙂 Share your thoughts below!

Love, blessings, and coffee,

Frannie