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

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 

Our Thanksgiving Baby is Here!

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Say hello to our sweet baby, Uriah Lee, who arrived November 21st around 4 p.m. He has certainly had an adventurous beginning. 7 weeks early and surprising everyone as they all thought my labor pains were only Braxton-Hicks (I told them!). However early he was we are so thankful I was able to stay pregnant for so long after my water broke at 24 weeks (God gave Uriah 63 extra days to grow!).

We are so thankful God has given us this little boy. It took the NICU team 8 minutes to encourage Uriah to take his first breath (thankfully, they had oxygen on him the moment he emerged so there is no damage from that delay). That was a difficult, precious time as Dalton held my hand while he watched through a tiny window the team’s work. We both rejoiced when he told me it looked like the team was smiling and still using their stethoscopes, two signs of continued life. I focused on singing “He’s Got the Whole World in His Hands” to myself as that has been a favorite song I’ve sung to Uriah throughout our pregnancy. I can’t tell you how happy I was when they emerged with a breathing boy moving him to the NICU.

Currently, he’s two floors below us — we love finding our way to his room (although it is hard not having him right in my arms!). The brain diagnoses are still standing (Lobar Holoprosencephaly and Hydrocephalus) as well as a few new discoveries (an esophagus that is closed off, his trachea has an extra opening, and a heart valve which hasn’t closed properly, although they believe it will as many children deal with this issue which heals naturally).

Your continued prayers are important to us! If all goes as planned, Uriah’s first surgery will be this Friday (it is to open his esophagus and close the channel in his trachea). This will be followed by an eventual brain surgery where they place the shunt to drain the fluid surrounding his brain. Please pray for our special, delightful man! We are so honored to be his parents and walk this road with him. He really is the best!

My favorite things so far involve staring into his incubator and looking at his lovely, brownish hair. I love watching his eyes open and talking to him softly through the glass. Also, his little butt-chin makes me smile and he has such beautiful skin color! And honestly, his head isn’t that big! By the way, he weighed 5.35 pounds and measured … I’ll have to ask the NICU team. Some things go over your head during a c-section! 😉

We’re already smitten! God is SO good in giving us this baby boy and we thank Him for walking us through this path!

Love from a new Momma,

Frannie

One Month Ago Today: Hospital Anniversary

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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