Resting after Surgery // Our NICU Journey

fullsizerender-22

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.

Read more

Encouragement and Coffee Time with Psalm 142

Scripture for the heart and encouragement with AuthenticVirtue.com

“I cried unto the Lord with my voice; with my voice unto the Lord did I make my supplication. I poured out my complaint before him; I shewed before him my trouble. When my spirit was overwhelmed within me, then thou knewest my path.

In the way wherein I walked have they privily laid a snare for me. I looked on my right hand, and beheld, but there was no man that would know me: refuge failed me; no man cared for my soul. I cried unto thee, O Lord: I said, Thou art my refuge and my portion in the land of the living.

 Attend unto my cry; for I am brought very low: deliver me from my persecutors; for they are  Bring my soul out of prison, that I may praise thy name: the righteous shall compass me about; for thou shalt deal bountifully with me.” Psalm 142, KJV

This week’s favorite Psalm was definitely Psalm 142. It was a good week full of quality time with Dalton, sweet friends, an awesome mail day, and a visit with the doctor that gave us a few answers and hope for Uriah’s health. Plus, a whole week without contractions and labor is a huge blessing!

However, there are moments when life feels hard. Preterm labor is a constant unknown when your water has broke. Infection is always a looming possibility. The extremely rare threat of the dreaded pro-clasped cord hangs above my head like a dark, menacing cloud. Then, out of the blue, some conflict arises (and you know how I hate conflict) and I cow and fail to speak up and that brings all sorts of dreaded feelings and issues. To sum it up, life can still feel hard and lonely and full of hurt even when it is full of blessings, light, and life.

When I opened my Bible this morning I cried out, “Oh, Lord, help me!” I’m reading through the Psalms and eventually came across Psalm 142. It’s simple and to the point: sometimes, only the Lord can understand and comfort us. Sometimes, human sympathy and understanding, though there, falls short. Sometimes, all we can do is “show Him our trouble, pour out our complaint, and cry unto the LORD …” We can know that we were heard and understood. The longings and cries of our heart are seen and known.

Isn’t that utterly beautiful?

With love, blessings, renewed hope, and coffee,

Frannie

Weekly Blessings

AuthenticVirtue.com

Sweet people, it has been a beautiful week. It’s been eight days since we learned of baby Uriah’s health issues and I am amazed at how quickly life goes by! I’m wanting to be more consistent with blogging but brainstorming posts and creating images seem to be the last thing my brain wants to do so be on the look out for more ordinary, day-to-day posts. I know you won’t mind. 🙂

God has been so good to us. This last week was full of unexpected blessings and I wanted to share a few of them with you! Not only does it bless my heart to tell you of how God is taking care of us but sharing our blessings reminds me to be joyful. Some of our blessings included:

The day I got our sad news Dalton was able to come home from work right away. It was *such a comfort* to have my darling man home with me that first day.

My mom surprised us with a visit! She also brought goodies along with her in the form of a pumpkin spice latte, two beautiful yellow mums, a homemade dinner, and lunch out. It was so sweet of her to give up her plans to be with me during the first two days after our ultrasound.

On Sunday night we left to see our families which is always a special time. I got to see my brother (our schedules often conflict since he’s in college and Dalton has strange weekends) which was so fun! And we got to spend a lot of time with both sides of our family. Plus, my darling Mother-in-Law sent me home with a bundle of new scarves and baby shoes! <3

Connecting with families who have experience with Hydrocephalus. It is so exciting reading about others’ experiences and learning from their words. Also, we have received hundreds of comments, texts, calls, and messages from friends and family praying for us. Thank you, thank you!

I had coffee with a very sweet friend this morning. It was so good to visit and share our hearts together. This is also the same friend who brought us a delicious, yummy meal last week! She showed up with a yummy breakfast casserole, pint of orange juice, pumpkin spice creamer, cheese, keurig cups, and pop tarts! Plus, she spoiled me with flowers and homemade chicken noodle soup today! (Aren’t we loved?)

The postman delivered a darling card from my friend, Angel. I just love mail! Plus, the Starbucks giftcard tucked inside really brought a smile to my face. <3

Fall is almost “officially” here and I’m enjoying putting up my decor, lighting candles, and listening to Christmas music.

Even though our midwife will no longer be our prenatal/pregnancy provider, she asked me to continue seeing her so she can keep tabs on my health. However, she is generously asking that we not pay, even for the months she has tended to me and baby! Plus, she offered to attend our birth and/or c-section so that I can have someone who has experience in the medical world and who I know and trust.

Sweet people, I am overwhelmed at God’s goodness!  He is so kind and loving and is using the many people in our lives to love and comfort us. Sometimes I feel overwhelmed at all that we may face but it is little (and big!) things like the above which prove to me that we are exactly where God wants us to be and that He is carrying all three of us in His hands.

What blessings did you experience this week? Do you have anything we can pray for? Leave a comment below and let’s encourage each other! 🙂

Love, blessings, and coffee,

Frannie