Songs for the Christian Mom in the NICU

AuthenticVirtue.com

 

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.

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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.

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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

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

Dealing with Anxiety: Coffee Series

Dealing with Anxiety @ AuthenticVirtue.com

“Why art thou cast down, O my soul? and why are thou disquieted in me? hope thou in God: for I shall yet praise Him for the help of His countenance. O my God, my soul is cast down within me; therefore I will remember Thee from the land of Jordan … the LORD will command His lovingkindness in the daytime, and in the night His song shall be with me, and my prayer unto the God of my life.” Psalm 42:5,6,8

Every once in a while I catch the blues; you know, the Eeyore-like tendency to see the world colored in grey, fearful, and unhappy? And don’t worry, I sometimes felt this way before my time in the hospital.

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