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

Parenting is Hard and Holy Work

We’ve officially been home from the NICU for 74 days. Having Uriah safe and in our own little nest has been more exciting and more fun than ever expected. I love having him to kiss and hold and read to at any moment of the day. I love watching his developing milestones take place on my own living room floor. And I adore the moments I catch him smiling because he’s happy in his home.

But motherhood is a lot more than I ever thought it would be. About once a week I find myself having a mini-anxiety session where I ponder the question all mothers do … am I doing enough? On top of that, I fancy having a child who requires special cares multiplies our fear that we are failing our little people.

Eventually, that worry snowballs into a once a month cry-fest where I turn to my husband’s strong chest and sob tears that have to come out. Stuttering cries fill our small bedroom because what if Uriah doesn’t develop properly because of me? Because, as all special need parents know, playtime isn’t just playtime any more; it’s physical and occupational therapy. Eating isn’t about getting your baby to latch or getting them to like all their food groups; it’s about watching for silent aspiration and pneumonia. And every time you run out of the house for thirty seconds to drop the garbage into the bin you run back in because what if your baby’s ventilator disconnected from the trach. It’s rereading the Resuscitation Instructions once a week so you’re as prepared as possible for something to go wrong with your medically complex child. It’s greedily counting the medical supplies shipped to your home once a month and then going to the store to buy all the regular things your ordinary yet not so ordinary baby needs.

It’s so much and sometimes I feel like I don’t measure up.

Mom, if you ever feel this way, I know. I feel all the feels with you. Parenting is responsibility. And special cares or not, it is hard.

The beautiful thing is that this hard thing we’re doing? It’s a God thing. Children are gifts from God; they’re not add-ons to your already full life. They’re not the next step in life. And they are never mistakes. God’s Word makes it clear that our babies are fearfully and wonderfully made and rewards. And if God is in it it is holy. And all that hardness? It’s meant to make you more holy.

So, that baby who is fussing, or that toddler who is out of control, or that teenager who lives a busy and sometimes wildly confusing life, they’re all God things. (He’s also there for all the one’s taking care of an ailing spouse or family member.) It’s holy, hard work but that means God will be in it.

I cannot tell you the times I have seen God come in an lift my weary heart. He did it from the very beginning, during my misdiagnosed miscarriage, through the very scary first trimester, when my water broke at 24 weeks, during my 63 days on hospitalized bed rest, and during the 7 months Uriah lived in the NICU. God showed up and personally walked us through the hardest season we have endured.

And He’s here. God is still walking me through the nights when I feel like I simply didn’t measure up. He’s here, ready to bear my burden and give me grace, on the days when I’m afraid I didn’t do enough.

He’s here and He is more than enough. 

Sweet friend, I know. I know that this blog post isn’t going to fix the anxiety-filled nights or worried-filled days. I know that you can enter the morning feeling like Wonder Woman and go to bed feeling like a stinking pile of failure.

Despite how you feel, I want to encourage you to embrace the truth — that this hard work you’re doing? God will walk you through it if you let Him. And He will let the hard work be holy work if we let Him work in us.

I’d love to hear about your experiences of parenthood? Tell me your stories! I love hearing from you? 

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 

Making Memories in the NICU

Crafting good moments in the NICU can be hard. When pregnant you prepare for all the normal, beautiful things a healthy pregnancy brings. You decorate the nursery, stock up on diapers, and prepare your home for baby’s arrival. Special memories happen every moment — from the time you bring your little one home every moment is a new memory and something you’ll cherish forever.

But what happens when you don’t get to bring your baby home? What if days, weeks, and months trickle by while your little one fights for life in the hospital? For most families, making memories at home just happens but for many NICU parents, memories feel a lot more like PTSD.

We’ve been in the NICU for (almost) 5 months. It wasn’t until Uriah was 2 months old that I realized I had been unconsciously holding back on making memories. Thoughts like, I’ll be a real mom when I am solely in charge of my Uriah’s care and we’ll do special things when we’re out of this place in back in the real world silently affected my behavior.

I mean, how do you make memories when you can’t even pick up your baby because he’s in an incubator, with a breathing tube, and a picc line iv? How do you create special moments when you’re always surrounded by staff, always hearing loud alarms, and always afraid for your little one’s life? How do you make the moments between morphine drips, infections, and surgeries fun?

Sweet parent, if you’re in a similar situation, it can feel trivial and too hard to focus on making memories with your little one. You may feel like waiting to get home before you start creating special moments; you may even be too afraid to do special things with your child until you know, for sure, if he or she is even coming home.

I know. I’ve been there.

But, at some point in your NICU-parent career, you’ll wake up and realize that this is your story. This moment in the NICU is as much a part of your motherhood as anything to come. Your baby will never again be a baby. He will grow up, one month at a time, and you’ll look back and wonder where your tiny, darling preemie went.

I know. I’m there. (I mean, how did I become a parent to a fourteen pound, babbling baby boy?)

So, how do NICU parents make special memories when life is anything but perfect?

With intention. It’s very easy to let hours slip by when you spend most of your time in a hospital. Right now, my life revolves around pumping, arriving at the hospital, grabbing a cup of coffee, meeting with doctors, playing with Uriah, physical therapy, changing diapers, putting Uriah to bed, pumping, eating lunch, giving Uriah a bath, trach tie changes, playtime and therapy, naptime, pumping, and going back to the Ronald McDonald House.

When I am not purposeful, those hours fly by. Sometimes, I literally cannot remember what kept me busy all day and, for the life of me, I can’t figure out why I am so tired.

I am purposing to be intentional. I’m going to slow down. Here’s to really playing with my little boy instead of worrying about whether or not we’re meeting milestones. Here’s to reading him his favorite book and taking the time to really give Dr. Seuss the drama he deserves. Here’s to holding the pacifier patiently, changing the diapers endlessly, and making trach changes as fun as they can be.

Because, Mom, this is your moment. This is your motherhood. And you’ll never get these days back. Here are some specific ways to make memories when your child is in the NICU:

  • Read dramatically to your child … and watch their facial expressions
  • Forget milestones … celebrate every victory
  • Really take in your child … admire her gummy grin, cherish his sparkling eyes, enjoy her tiny, perfect feet
  • Take pictures … really good ones where you see more of the baby than wires, if possible
  • Sing nursery rhymes … do the hand motions of Itsy Bitsy Spider and Patty Cake
  • Learn how to maneuver around the tubes and wires so you can pick up your little one yourself … or enjoy simply resting your hands on your preemie and feeling they’re warmth
  • Decorate your baby’s area … make a Likes and Dislikes poster for the staff … scrapbook pictures … draw a nametag and hang it on baby’s incubator
  • Take time to meet other NICU parents … really listen to their stories … really pray for them when you think of their stories
  • Do things for your baby with your spouse, if possible
  • Offer to bring your nurse a glass of ice water … or a $.25 Laffy Taffy
  • Create a schedule your baby can get used to around the staff’s schedule
  • Forget milestones (oh, did I say that already? That’s because this is probably the most important thing you can do for yourself and your baby).

These are just a few ideas that have helped us make memories. Yes, I can’t wait to get home. But more than that, I want to make these days special for Uriah. I want to be able to look back on these days and say, Yea, those days were hard but we sure had a few good moments, didn’t we? 

Talking about making the most of our moments why don’t you hop over to my new friend Stephanie’s blog, The Vintage Modern Wife. She has a brilliant, beautiful post about creating a sensory filled Easter for her little one. I think she has some EXCELLENT ideas for making this Easter special, especially if you have a little on in the hospital.

NICU parents, what are some ways you have made special memories while in the hospital? Are there any budget-friendly, space-friendly ideas you could share with us? I’d love to hear!

Love, blessings, and coffee,

Frannie