Songs for the Christian Mom in the NICU

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It’s laundry day at the Ronald McDonald House and, while I wait for my load to finish drying, I thought I’d share some of the songs that have inspired, encouraged, and helped me over the last several months when my waters broke at 24 weeks, the 6 weeks of bed rest in hospital, and now on our NICU journey.

I’ve discovered that there are days when all I an do is sing a song to the Lord … I have no mental energy to pray other than whispering single sentences as I walk the hospital hallways looking for coffee or a pumping room. There was also a time when I needed to cry, you know, the gut-hurting, throat-pounding sort of cry, but my stomach hurt too much from my c-section and I didn’t feel that I had the time or privacy necessary for the cry I was needing. #UglyCrier #HusbandLovesMeAnyways #He’sAGem Singing or listening to music was the emotional release I needed during the time when I couldn’t shed tears.

I would love to know what songs are carrying you in your season of life? Share below in a comment! 

Love, blessings, and coffee,

Frannie

Hello, Mommyhood. Goodbye, Perfection. (NICU Style)

A 2 minute read about embracing mommyhood and releasing fear @ AuthenticVirtue.com

It’s an interesting thing being a first time mom. Even more interesting is learning how to care for your first child in the confines of NICU walls. Between the breathing tubes, alarms, flashing lights, and wires there is a beautiful, tiny, precious soul yearning for your love, care, and touch.

For me, it’s a stretching experience learning to mom in the NICU. I’m a hesitant person naturally; I tend to take to new projects and experiences cautiously until I know I can handle the situation successfully.

But babies can’t wait for that amount of confidence.

I realized my hesitancy for caring for Uriah came from my stifling, constricting desire for perfection. A million excuses of why I shouldn’t do something filled my terror-filled heart. I’m not capable of changing his diaper; what if I make him choke? I’m not qualified to pick him up; what if I hurt his neck? I can’t hold him; what if he should need suctioning? There were a million reasons for why the nurse should help Uriah instead of I. A million what-if’s keeping me from cradling my son as only I could. A million possibilities of what I could do wrong.

One day, I held Uriah up against my chest for the first time. He was breathing-tube free, IV free, and around 6 weeks old — high time for some good cuddling. The physical therapist, who placed him on my chest, left the room and eventually Uriah began to slump into an adorable, albeit uncomfortable, lump. He needed to be lifted into a more comfortable position.

I struggled to place my hands where they needed to be to support his head and body so I asked Dalton to help me. In the midst of four hands, two bodies, and my worried whispers we managed to get Uriah back into the position he needed to be but not before his head bobbed a bit recklessly like all new born heads do.

And guess what? He didn’t die. He didn’t break or fall a part like I had been dreading. Oh, he got wide eyed wondering what on earth was so hard about lifting a seven pound baby up mom’s chest. I got a look like, “Wow, Mom, why was that so rough?” but that was the extent of it. My little, fragile NICU baby survived my inexperienced handling. He braved my imperfections and came out fine if not better.

Motherhood isn’t about being perfect. It isn’t about how awesome you are at kangaroo care or how attentive the nurses think you are. Motherhood isn’t dependent on the amount of ounces you can pump or how fast you can change a diaper. In that moment I learned the same lesson I’ve been learning forever: my worth isn’t dependent on how well I do something.  

So, dear Momma, take a piece of advice from me. Breathe. Breathe in, breathe out, and relax. You won’t be perfect. You’ll struggle, you’ll learn, and you’ll grow. And so will your baby — thanks to you.

Welcome to Mommyhood. A new place to embrace the fact that you’re worth more than your performance an accept the grace of your loving friend, Jesus.

What do you think? Are there challenges in your life forcing you to face your imperfections? Do you need prayer as your brave this season of life? Comment below — I love to hear from friends and this is a great place for community. 

Love, blessings, and late night coffees,

Frannie

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Baby Update: 37 Days Old and Growing!

 

Hello, sweet people!

Uriah is now 37 days old! What a beautiful thing it has been to have him in our lives! There have been several exciting blessings over the last few weeks and I’ll share them below!

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Here I am holding Uriah for the first time when he was 3 weeks old. What a special, delightful moment. So special!

Here we are at 28 days old when Uriah got his breathing tube out! This was a glorious day! Just the day before I had asked the doctor for a best case scenario of when the tube would come out and she had replied a week. The next morning we walked in to him being extubated! 😀 Since then I have heard him make lots of grunts and squeaks and one cry (he couldn’t make sounds while intubated). (Isn’t this picture adorable! He makes the cutest face when he looks at us! His forehead wrinkles are to die for!)

Uriah celebrated his first Christmas wearing clothes for the very first time! How stylish! 😉

Eyes wide open! We love it when our little boy is wake; he’s so fun! He is starting to wake up before meal times and occasionally sucks on his hand and thumb! He is eating 68 mils every three hours! Woohoo!!

Some other exciting news:

  • Uriah is no longer intubated or on CPAP; his breathing support is simply a flowing, humidified oxygen which is being weaned as he is able to tolerate it
  • He is holding his own temperature and may be moved to a real crib soon!
  • A speech therapist has begun meeting Uriah as we begin “swallow therapy.” Right now he gets all of his meals through an NG tube but we dip a paci into milk and let him practice sucking (which he seems to really like!). We hope to get a swallow study done this week which will tell us how well he is able to suck, swallow, and breath.
  • Uriah is more active than ever! This is day 5 or 6 of being totally morphine free (required for his surgeries) and we really think he enjoys not being sedated. And we sure love watching him move, stretch, and interact more often!
  • Last week, Uriah had a pretty serious blood acid issue which mystified the doctors. He wasn’t responding to a large dose of medicine they had given him to correct the high levels which led the doctors to believe he had a metabolic disorder; ultrasounds were taken of his kidneys and liver while genetics were requested. Yet, none of the specialists could find a reason for him to be referred to them; his kidneys and liver did not seem to be involved and the geneticist felt he didn’t have the right symptoms for a gene issue. The high dose of ineffective medicine upset his tummy and led to him being dehydrated so a new medicine was chosen. We thank the Lord that he began to show improvement and now his levels have remained normal for the last 3 days! We still do not know what caused the issue but we are blessed it has disappeared!
  • Uriah has the sweetest personality! He is so content, patient, interested, and sweet. He rarely cries even during hard things like heel pricks for blood draws. He works really hard at focusing on our faces and lifts his eyebrows when he is interested in something.
  • Our little 5 weeker (who should technically still be in my tummy at 38 weeks!) is now 6 pounds and a few ounces.
  • Uriah’s shunt seems to be working really well. The incision site has healed nicely and his head has stabilized, not loosing fluid too fast or too slow.

Thank you for all of the love, prayers, and sweet words you have sent to us! We are blessed and loved. God is so good!

I want to start blogging again but, to be honest, I have no idea what to write. I feel like I’m still in survival mode and all I can think about is Uriah, snuggling with Dalton, being with my family, going home, and coffee. Oh, and sweets. I’ve got a huge addiction to sweets I’m trying to master. And also Netflix. I’m sort of addicted to Call the Midwives and Lost again. I keep feeling like I have to figure out who I am … I’m a mom now but I’m not able to do all the mommy stuff one would normally do. I’m not busy changing diapers and breastfeeding; I have to wait to do all of that. I’m too tired to think spiritual thoughts other than mere whispers to the Lord. I haven’t made a homemade dinner in ages and haven’t been home since my water broke in September. Maybe I’m going through my mid-life crisis as I am turning 27 in a few weeks and am realizing that I am closer to 30 than 20. The beautiful thing is that it’s okay that I am changing; I just need to be able to go with the flow. 😉

Anyway, I love and appreciate each of you. Thank you for following our journey and blessing us along the way. God is a good, good Father and we have seen Him work so much good in our lives through this difficult time.

Love, blessings, and coffee,

Frannie

Resting after Surgery // Our NICU Journey

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It’s a quiet, early morning at our Ronald McDonald House. I’ve found my way into the large kitchen and brewed a pot of hot coffee. This is my quiet time to reflect on all that life has involved. I’m sitting by the lumpy, lit Christmas tree reading Psalms 9 by the twinkling lights.

We’ve made it. Uriah is 19 days old today and it feels like we’ve made it. His shunt, meant to drain the build up of cerebral fluid, was successfully placed yesterday afternoon and already his head has decreased in size by .9 . I’ve been told that children who are old enough to speak often say their heads feel better the day of surgery. I imagine Uriah may be feeling some of the benefits of the decreased pressure. (This makes my mommy-heart want to weep with joy!)

We’ve made it. We’ve walked through premature rupture of membranes, bed rest, infection, a placental tear, and a labor/c-section that wasn’t typical. We’ve made it through 19 days of intubation, iv lines, a TE Fistula surgery, a newly placed NG feeding tube, and now, finally, the shunt placement.

And all I want to do in my quiet, coffee-filled, Christmas tree lit spare moment is cry and laugh and sing and cry some more.

God has been amazingly, wonderfully here and good. “I will praise thee, O LORD, with my whole heart; I will show forth all thy marvelous works. I will be glad and rejoice in thee; I will sing praise unto thy name, O thou most High. When my enemies are turned back, they shall fall and perish at they presence. For thou hast maintained my right and my cause …” Psalms 9 

We still have a journey ahead of us. Shunts fail and get infected; they need to be replaced and sometimes frequently. Uriah’s still recovering from pneumonia-like illness and his little right lung is still healing from being mucous-filled and occasionally collapses. We have no idea what amount of damage was caused by the pressure build-up and we have no idea how much his brain will “fluff”.” (Although we have very high hopes and have been given a good prognosis). And along with the recovery from the CF build-up our little one may face difficulties reaching milestones since he was born early.

But all of that can wait. All of those unknowns can be faced one step at a time. Because today our little boy has less pressure in his head than ever before. Today, our little one has conquered his last foreseen surgery (although realistically there may be more). But for today, we’ve made it. Today we get to focus purely on recovery and growth and feedings and milestones and being weaned from the ventilator. Today, the sun is shining brighter than it has all week and my heart feels lighter than it has in a long while.

Thank You, Father, for caring for us. Thank You for giving us such a brave, strong, sweet little boy. Thank You for his Hydrocephalus and for his pneumonia and for his TE Fistula. They are things I wish I could take away and never make him face but they are things You have been Victor and Healer in and You are wise in all that You send to us. Thank You for caring for us through other people; thank You for the financial gifts, encouraging cards, and sweet messages and visits you’ve sent us through friends and family and strangers. We have never been without and we have never seen You fail and I trust You in this journey.  

What journey are you facing today? Are you at the beginning, middle, or end? Have you seen God carry you through or are you in a waiting phase? Comment below — I’d love to be able to pray for you.

Love, blessings, and coffee (and a chocolate cupcake) 😉 ,

Frannie

11 Days Old Update with Prayer Requests and Praises in Our NICU Journey

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Good morning, sweet people. Thank you for all of the comments, emails, prayers, and encouragement you have poured on our family. Today, Uriah is 11 days old!! What an amazing thing it is to have a son!

Currently, he is still recovering from his TE Fistula surgery. It was harder on him than the doctors predicted and his blood work is showing a drop in platelets; he had a blood transfusion this morning. They’re also treating him for pneumonia and infection although it is still unclear if his little body actually has an infection or is just recovering from the stress of surgery or a combination of both. He is still dependent on the ventilator and we’re unsure if that is due to the possible infection, swelling from surgery, or the effects of the sedation and medication they have him on as he heals. (Although he is breathing on his own! It’s just that his breathing isn’t as effective as it needs to be … but we’re getting there!)

When I think of all the pokes, prods, and discomfort my sweet boy endures every day I want to weep! He is such a brave soul and contented baby; technically, he should still be growing in my tummy at 34 weeks but here he is! And even though we couldn’t hear him if he did cry (the ventilator blocks his vocal cords) he only grimaces when he is uncomfortable … not even one cry yet! (Dalton says he must have inherited my sunny disposition). 🙂

Some specific prayer requests are:

  • That Uriah heals fully from his TE Fistula surgery (esophagus/trachea)
  • That swelling would go down (which would help him come off the ventilator)
  • That any infection would be defeated
  • That his shunt surgery (next week?) would go well

Our lives are starting to find a new normal. We were so blessed and excited to be able to move into one of the Ronald McDonald Houses; we have a comfy room with three twin beds (ha!). We’ve pushed two of the beds together and are using the third for a table. I’ve got to say, after 65 days in a hospital bed and couch we are loving sleeping side by side in the softest mattress ever.

Our days typically involve me getting up at 5 in the morning to pump, Dalton delivers the milk to our mini fridge in the (big, beautiful!) kitchen, and then I head to the dining room, make coffee, and spend some quiet time reading, praying, and catching up on bills and paperwork. I’ll normally make breakfast (it’s fun to be able to do things again after bed rest!) and then we head to the hospital around 7:30 or so to make the doctor’s rounds. (I love hearing their plans, catching up with their ideas, and having a moment to ask questions).

Then we begin the cycle of visiting with Uriah — stroking his head, holding his feet, talking to him, watching him sleep, visiting with his nurse, wiping his little mouth, and reading to him. The day typically moves on to pumping time, visiting time, lunch time, pumping time, visiting time, pumping time, and occasionally we’ll squeeze an afternoon walk in there to refresh and relax. Then it’s visiting time and eventually we head home. Leaving is the hardest so I make sure I hover over Uriah and speak words of peace and promise over him.

We’ve been here just over a week and have decided that it would be fun and relaxing to add a date night back into our lives and also one morning a week where one of us goes to the hospital first while the other sleeps in and then we switch. That way we both can get some good quiet time and one-on-one time with Uriah.

Overall, I’ve got to say that we are really blessed. This journey is hard but it also full of joy.

There is joy in seeing Uriah’ beautiful, pink skin every morning. Joy in his opening his eyes and wiggling his eyebrows as he tries to focus on the things around him. Happiness in kissing his hand. And so much love in watching him simply be … he simply is the cutest baby around! 😉

There is joy in watching Dalton place his big hands around his child and speak softly to him. Joy in watching Uriah wake up to the sound of Daddy’s voice.

There is joy in being with Dalton during this hard time. It is fun bonding with my husband post pregnancy, post bed rest, post c-section recovery. I’m no longer wheel chair dependent and I can walk without much pain at all. 🙂

There is joy in the Lord. Over the last several months He has shown me how good, attentive, and caring He really is. I’ve learned that God really does answer prayer. I’ve seen countless good things come to us: we didn’t have a miscarriage, I didn’t go into labor when my water broke, I didn’t get an infection, Uriah grew for 64 days in low fluid levels, my placenta did not tear entirely, I got the c-section I wanted (due to the Hydrocephalus) but I also labored for several hours (days?) which was a good experience (haha! painful but good!), Uriah did finally breath after 8 minutes (and he had oxygen the entire time), we transferred to a better hospital, his diagnoses has been changed, Uriah’s TE Fistula surgery went better than expected, and soon he will be getting a shunt.

We are blessed and God deserves all the glory for the work He has done in our lives.

This is a super long post but I there is so much to say! Overall, there is joy in all of the crazy, exhausting details because this is the child we prayed for and he is utterly, entirely, delightfully perfect and wonderful. We are so blessed.

With much love, blessings, and coffee,

Frannie

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

A Happy Day // Hospital Update

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We have a wonderful, wonderful update.

This Thanksgiving we spent the day transferring Uriah to St. Louis Children’s Hospital. It was a busy day but a decision we are so glad we made. Uriah was 4 days old when he took his first big ambulance ride!

We transferred when our Neurosurgeon team gave a very elusive, negative prognosis and treatment plan. Basically, they felt there was too little brain tissue to bother inserting a shunt (and therefore relieving the pressure in his head). They felt the risks and common difficulties of a shunt were too high and would only recommend it if Uriah’s head got too large and difficult for us to care for. They said his brain was so underdeveloped that he was blind and most likely deaf and that he would have very little motor control.

Needless to say, we needed a second opinion. I have had months and weeks to research, read, and connect with families with similar diagnoses’ and I knew how beneficial a shunt could be to Uriah. I also knew that parents of babies with these sort of brain anomalies are often told that their children would would have the poorest quality of life with enormous difficulties.

I thank the Lord for my amazing husband! Within moments of the doctors leaving, Dalton jumped into action, planning how to send off MRI’s, and asking me who I knew we could connect with. By the end of the night we knew we had to transfer to St. Louis Children’s Hospital.

This afternoon part of the Neurosurgeon team met with us to discuss Uriah’s care.

And guess what?! After reviewing Uriah’s scans and examining him they say he does not have Holoprosensephaly (where the front part of the brain did not divide). They do not know why the last hospital gave him that diagnosis.They believe that his brain did in fact divide properly but that his severe case of Hydrocephalus compressed it.

They want to insert a shunt and believe his brain is very likely to “fluff up” or “sponge out” once the pressure has been relieved! And while his brain may never be fully formed like yours or mine and developmental delays and special needs are likely they see no reason for him to be blind.

I cannot tell you what this means to us. To leave behind a hospital that encouraged us to do nothing but manage the symptoms of Uriah’s pressure and enter one that believed a shunt would be very beneficial to him is absolutely … I have no words. (All I want to do is cry tears of happiness but that hurts my incision so I just sit in awe and thanksgiving and ponder all the possibilities our Uriah Boy has). 🙂

When we left the last hospital Dalton and I knew that it was a possibility to be given the same treatment plan in St. Louis. And we knew that if Uriah was meant to be blind, deaf, and benefit more from a lack of treatment than we would love him just as strongly. But we just *had* to know if the doctors were right. We just had to have a second opinion. ***We wanted his brain to be given a chance to “fluff out” and recover from the damage the blockage created.*** We wanted him to be given a chance.

My new mommy-heart is so full. There is no greater gift than being given a chance, both spiritually and physically, and we thank God for giving us both. I am thankful we were given the time to prepare, research, and connect with families with similar stories so we would know how to respond (all that bed rest proved useful in more ways than one!). I am thankful for a husband who is bold enough to demand second opinions and question professionals (I’m not so much) 😉 . I am thankful that Children’s accepted Uriah’s case and gave him the medical attention and examination he needed. I am thankful for a medical team who personally meets with us. And I thank the LORD for the better diagnosis. I was prepared to love a little boy with two life-altering diagnosis … to be told he has only one (and the relatively more minor one at that!) is something I never thought I’d hear. I honestly can’t believe it.

Thank you all for your prayers. We’re currently holed away in a hotel room and I am enjoying being able to finally put my swollen feet up and drink coffee in peace. We’ll be right back to Uriah’s bed tomorrow morning but for the moment we rest and smile little happy smiles to ourselves over the good news. We love our son so much, no matter what his diagnosis and abilities, but this news is truly refreshing.

As far as upcoming surgeries, Uriah’s TE Fistula (esophagus/trachea) surgery is being tentatively planned for this Monday (it was rescheduled when we changed hospitals) and then his shunt surgery will follow in the coming weeks after he has rested and recovered from the first.

We still have a long road ahead of us but this makes the difficulties so much easier to wade through. Is there anything better than a chance?

Love and blessings,

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

Thankfulness and Hospital Updates

AuthenticVirtue.com

Today I am thankful for …

Day 25 of still not going into labor! My water broke 25 days ago at 24 weeks and, praise the LORD, Uriah is still safely within my womb at 27 weeks and 4 days. That leaves about 46 days until the doctors feel he would be grown enough to meet the world at 34 weeks; time is flying by!

A hospital room with a beautiful view; I can see the leaves changing and the sun rises on this side of the building.

Nurses and doctors who are both kind and professional.

Dalton Duncan … he is so much the best ever. He had a long, four-day weekend with me and every moment was a joy. We’re in the process of applications and he willingly went home and dug around in our files searching for every article necessary. He washed laundry so I’d have fresh jammies. He fluffs my pillows and makes my bed. Wheelchair rides with him are fun, special, sunshine filled moments. He surprised me with a (delicious!) cheese burger and order of cheese fries (which I’d been craving). He prays over me and talks to Uriah every day. I am so, SO blessed to have such a dedicated, loving man. Thank you, Lord, for my husband!

Uriah Lee Duncan … is also a real joy in our lives. Even though we haven’t met this little man we are so excited as we dream of his eventual birth. What color will his hair be? Will he be a quiet baby or a crier? How much time will he need to spend in the NICU? I dream of bringing him home, outside picnics, and watching him experience grass, snow, and summer heat for the first time. I’m excited that he will be with us for Christmas this year … even though he’ll be in the NICU (most likely) we three can celebrate our Savior’s birth together!  We both yearn for the day when we can take him home and introduce him to our cozy nest and begin finding a new normal of life with a baby; one day, we can take him on our weekly trip to Aldi. Maybe one day we can take him on a cruise.

And while we do not know the extent of his abilities or disabilities we are looking forward to watching him grow, helping him be all that he is meant to be. I’ll focus on stimulation, reading, and daily working in books and audio into his life. Dalton will focus on exercises, stretches and at-home physical therapies he may need to strengthen and relax his muscles. And together we will love, cherish, and enjoy this little boy, one day man, God so purposefully placed in our lives. He is the child we prayed for and we cannot wait to meet him.

Finally, I am thankful for how good God has been to us. Our entire pregnancy has been a bit abnormal but I’ve seen how God has carried us through every moment. I used to wonder why I experienced a misdiagnosed miscarriage and the scariness of bleeding/spotting early in our pregnancy; what purpose could God have had for those experiences? Now, I am thankful for it; the pain and sorrow of those times prepared me for the pain and sorrow and trauma of being told our son had brain abnormalities. I have experienced very little pain in my life; it’s mostly been sunshine, and rainbows, and beauty. So, the two weeks of a misdiagnosed miscarriage toughened (in a good way) the soft skin of my heart enough that discovering Uriah had Lobar HPE and Hydrocephalus wasn’t as difficult a blow as it could have been. At least I still had my son and God has a tremendous purpose for his life; nothing is an accident with the Lord, everything is planned and ordained.

There are countless other ways we have seen God walk with us during this time. Encouraging notes and gifts from family and friends. When I was first admitted to the hospital it was during Dalton’s weekend and he had an extra day off; a huge blessing during those first scary hours! My fluid is very low but I keep producing (some weeks I’m even higher than others!). I’ve been able to connect with real-life families who have children with Hydrocephalus and Holoprosensephaly (which is super helpful as Googling only presents the worst-case scenarios). Our applications for financial help have been processed and begun. And countless, countless other gifts make it known to us that we are not alone, not forgotten, and not misplaced.

God is so very, very good and we love Him.

What are you thankful for today? How have you seen God working in your life lately? Share in a comment below; I love hearing from you!   

Love, blessings, and coffee,

Frannie

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Welcome, friend!