When Life Knocks the Saint Right Out of You // Coffee Series

Coffee With You Series

There’s a lot of feelings that happen when your life is turned upside down. For me, I’ve definitely become more acquainted with fear, anxiety, and anger from being in the NICU. There’s just something about not being in control of your child’s well-being that knocks the saint right out of you.

And guess what, that’s exactly what I needed.

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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.

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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! πŸ˜€ 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! πŸ˜‰

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. πŸ˜‰

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 9Β 

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. Β 

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) πŸ˜‰ ,

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! πŸ˜‰

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