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

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

Scriptures for the High-Risk Pregnancy

5 Scriptures that Give Peace During a High-Risk Pregnancy @ AuthenticVirtue.com

5 Scriptures that Give Peace During a High-Risk Pregnancy @ AuthenticVirtue.com

Across my medieval hospital desk I have index cards with various Scriptures written across them. I intended these to be read to me while I labored and birthed Uriah in our cozy home, with Dalton next to me, and a trusty midwife helping us along.

Now, the verses bring comfort in another way. My water has been ruptured for 19 days now and this is our 18th in the hospital (with 8 weeks to go, Lord willing!). There have been days when these verses were constantly being browsed over; during the first week especially I needed reminders of God’s goodness, control, and love.

Below are 5 verses which seem to always be finding their way from the plastic, gray drawer and across the fake wooden top of the desk. These are the top 5 verses I have found comfort in during our high-risk pregnancy.

“Because of his strength will I wait upon thee: for God is my defense.” Psalm 59:9

I love this verse; the whole chapter is of David spilling out his woes, fears, and impressions of his enemies, yet, in the end he determines that he will wait on God because He is his defense. Realistically, I don’t have enemies; I’m not being hunted by villains or persecuted by crooked family. But I do have enemies of the heart: fear, doubt, and faithlessness constantly harassing me. Simple, ordinary fears pummel high-risk pregnancy (fear of labor, fear of the unknown medical questions, fear of the worst case scenario). Because the strength of my enemies I will wait on You, LORD God, because You are my defense and so much stronger than the strongest foe I face. 

“For God hath not given us the spirit of fear; but of power, love, and a sound mind.” 2 Timothy 1:7

I know that 10 weeks of bed rest is the perfect time to bond with my little, rest, and prepare for the upcoming labor and life to follow. But it is so easy to let the days be consumed with the spirit of fear! I love that God has not only not given us fear but He has given us power, love, and a sound, controlled mind. As Christians, we can literally say to our mental minds, “Is this thought powered by fear? Because, if so, it is not of God and it no longer needs my attention.” We can confidently enjoy God’s gifts of power, love, and a sound mind; we don’t need to be a doormat to fear-filled thoughts.

“And Adam knew Eve his wife; and she conceived, and bare Cain, and said, I have gotten a man [with help] from the LORD.” Genesis 4:1 

I love this verse because it is simply so simple. The very first birth of the entire world was followed by words spoken by a woman who had never before experienced labor, never talked with a doctor, and never even heard the term “breech position.”

And at the end of her experience she said simply, “I have gotten a man from the Lord.” By His kindness, by His great creativeness, by His power, and by His help, she received a man-child.

And guess what, sweet, preggo person? So have you. It’s the very same Lord Who walked with Adam and Eve, Who gave them a child, and Who helped her through labor that is giving you your child.

During my high-risk bed rest, labor and pain, and all the unknown days ahead I want to remember, “I have gotten a man [with help] from the LORD.”

“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: I will make mention of Thy righteousness, even of Thine only. ” Psalm 71:14, 16

This has been one of my go-to verses from the moment we discovered Uriah may have health issues. And once I was admitted to the hospital for an early membrane rupture I again turned to this verse (I was actually repeating it to myself as we drove to the hospital).

Why? Because it gives me purpose. I will hope continually (as in I will keep on hoping when hope seems ridiculous). I will praise You more and more (because You Lord are worthy of praise even in what looks like our tragedy). I will speak of Your righteousness and salvation all day (because these are the only things worth speaking of and there are people in this hospital Who need to know you and the numbers of them are unknowable!). I will go (to bed when I feel restless, to the ultrasound when I don’t want to hear bad news, to get another heparin shot …) in the strength of the LORD. I will make mention of Your righteousness only (because it is this righteousness which makes our lives worth living).

See how deep, how real, and how applicable these words are? They’re life-giving and doable and beautiful.

“All the paths of the LORD are mercy and truth unto such as keep His covenant and His testimonies.” Psalm 25:10

Finally, a last reminder of God’s amazing purpose and kindness in our perfectly imperfect pregnancy. From a human standpoint our pregnancy has looked riddled with “mistakes.” A misdiagnosed miscarriage, a 20 week diagnosis of Hydrocephalus, an early rupture at 24 weeks with a following discovery of Lobar Holoprosensephaly, topped with 10 weeks of hospitalized bed rest and countless unknowns until our little miracle makes his appearance.

From a human viewpoint, it looks bad.

But, sweet people, it is anything but. All the paths of the LORD are mercy and truth. All of them. From the moment Uriah Lee was conceived, fashioned in the image of God, and formed with the Creator’s own hands, his path has been covered with God’s mercy and truth.

This isn’t a mistake. This isn’t an oversight. This isn’t a punishment. This isn’t bad. This isn’t the end of the world. This isn’t something to change or even wish away.

This is a path God has given us and it is filled with mercy and truth. Every day is filled with His grace. Every moment I spend in the hospital is overflowing with His goodness. Every hour Uriah remains in my womb is a gift. And every day following his birth, whether hard or easy, healed or disabled, is full of mercy and truth and graciously given by God.

And it’s the same for you, preggo Momma. I don’t know what sort of pregnancy you’re experiencing. I’m not sure if you’ve been labeled high-risk or are experiencing some trauma.

But, God’s Word is true. And every path He lets His people walk … you can guarantee it’s covered with mercy and truth.

What Scriptures brought you comfort during a hard season of your life? Share with us below in the comments — I love hearing from you! 

Love, blessings, and coffee,

Frannie

Hospital Adventure: Week 25 and a New Diagnosis

Join us for our hospital adventure with baby Uriah @ AuthenticVirtue.com Hello, sweet readers! I realized that I shared our latest hospital update with my Facebook friends but forgot you lovely souls. We met with the doctor on Monday and got a little more info on what they think is going on.

Uriah does still have Hydrocephalus (fluid on the brain) pretty significantly but they think it has been caused by him having Lobar Holoprosencephaly (where his upper front brain didn’t divide as it should).

Now, the good thing is that the “Lobar” version is the most mild version of Holoprocsencephaly.

We will not know what the outcome will be because there are so many factors with both Hydrocephalus and the Lobar Holoprosencephaly. Many kids can develop normally, some have medium learning disabilities, and some can be far worse.

But the good news is that it they think it is the “Lobar” level (the mildest version) and his other organs look good.

So, some very possible things we will have to deal with are: intellectual and mental delays or disabilities, seizures, disabilities with his motor functions (muscle control and such), possible optic problems (his sight), and he will still need a shunt placed to drain the fluid.

But, even though those may sound bad, this was good for us to hear! It will be hard but we can work with Uriah on these issues. He may never be a “level 10” intellectually (or he totally could be!) but that doesn’t mean he has to be a “level 0.” We are both dedicated to helping him grow through these things even if they take much longer for him than for other kids. We can help him by being hands-on, getting him therapy, and working with his muscles.

At least we know that he has a good chance for survival and has the mildest form of the “Lobar” level.

Plus, its been 10 days since my water broke and no contractions or labor so I’m cleared for wheel chair rides, eating lunch in the cafeteria, and going outside. 🙂 The doctor feels I have a good chance of carrying Uriah to the 34 week mark (although things can always change especially if I were to get an infection). Dalton’s already wheeled me outside into the sun and around the cafeteria (he’s still the best).

That’s our latest news. To some people this could sound bad but we actually feel hopeful again. Thank you all for your love, prayers, and support. We SO appreciate you!

Love, blessings, and coffee,

Frannie