To the mother in the NICU this Christmas

Advice to the mother spending Christmas in the NICU or PICU.

I see you … you’re drinking Ronald McDonald coffee you smuggled into your little one’s room sitting in the middle of IV alarms, feeding tubes, ventilator equipment, and nurses chattering in the background. You’re spending Christmas in the NICU, PICU, or surgery floor. 

I see you smiling at your baby — thankful to be with her even if she’s in a warming tank or you’re wearing those noisy isolation gowns.

Despite your smiles I know you’re struggling with tears and questions — why do we have to spend the holidays here? Why do we have to endure this?

It’s okay; I know that your burden is very real and very heavy.

Can I give you some advice as a woman who spent 281 days in the hospital with her baby?

Mama, decorate your baby’s crib. Even in the middle of the storm, you need to find ways to make these days special.

If baby can tolerate stimuli, I hope you sing her your favorite Christmas carols and dress her in the outfit you got at your baby shower.

Eat the extra cafeteria sugar cookie and take a little time to look at the Christmas lights down the street.

Give your husband an extra long kiss before he goes back to work.

Please buy a tiny Walmart tree and set it up in your Ronald McDonald apartment and enjoy the free gifts they leave hanging on your door.

This is your Christmas.

This horrible, exhausting, lonely Christmas is your Christmas and one day it will end.

One day you’ll look back at this season and wonder how the days passed so quickly.

But until then, be easy on yourself. Find ways to make these precious days count.

You need to survive these days just as much as your baby needs to survive. You need to be gentle with yourself — after all, you’ve lost so much normalcy — it’s okay for you to grieve the loss of normalcy.

It’s okay. 

Love and blessings from someone who has spent the holidays in the NICU and PICU

Frannie

When Your Child Looks Different

In 2016 my water unexpectedly broke at 24 weeks landing us in our local hospital. I spent the next 63 days hoping and praying that I could stay pregnant for as long as possible. Those were long, hard weeks.

When you experience PPROM (preterm premature rupture of the membrains) you never really know how much time you’ll get with your baby. There are a million fears that plague you as you rest in bed and experience a high-risk pregnancy.

Add to the fact that we had been told our son had possible facial anomalies and the fear factor rose a million degrees. I worried — what if my baby has a misshapen nose or only one eye? (These were real issues we dealt with as the ultrasound was unreliable and the diagnosis we received can cause such anomalies). What if my baby is rejected by this world? What if he will be bullied? What if … 

That was when God sent this book to my room and began teaching me.


Pumpkin Patch Blessings is written by Kim Washburn and illustrated by Jacqueline East. I love this book because each page has a corresponding Bible verse, gorgeous illustration, and precious fall-themed rhyme.

I cherish this book because it taught me that no matter our physical appearance, disability, or challenge we are just right.

The first time I read Pumpkin Patch Blessings I cried. My worried, weary-worn mama’s heart cried as I read the truest of words:

Some pumpkins are bumpy.

Some are bumpy, bruised, small, or tilted. And some babies are born differently-abled. Diagnosis’ abound, medical complexities exist, and anomalies are something many face.

But that doesn’t mean they’re not right. Every child, every person, is formed in the image of God. That includes your baby, dear mama, who may have a physical impairment. Your baby with Downs Syndrome or severe eczema or Hydrocephalus. That precious soul hasn’t been forgotten or made by mistake.

They were hand-crafted by a God Who cares beyond what we can even imagine.

He didn’t make a mistake … He just chose to make someone extra unique for His glory. Your baby isn’t forgotten — he’s just right. 

I know it’s silly that a child’s book could give me so much hope but it did. It was in that moment that I embraced my child for whoever they would be and however they would be born. So what if my child was born bumpy? We would deal with it. We would love, cherish, and support that little one as they dive into life and find their purpose.

Are you a mama of a kiddo with medical complexities? How have you dealt with the differences you notice? I love hearing from mama’s walking through the same journey! 🙂 I’d love to hear your thoughts! 

Love, blessings, and lots of coffee! 

Frannie

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

Scriptures for the High-Risk Pregnancy

5 Scriptures that Give Peace During a High-Risk Pregnancy @ AuthenticVirtue.com
5 Scriptures that Give Peace During a High-Risk Pregnancy @ AuthenticVirtue.com

Across my medieval hospital desk I have index cards with various Scriptures written down. I intended these to be read while I labored with Uriah in our cozy home, with my husband and midwife keeping watch.

Now, the verses bring comfort in another way. My water has been ruptured for 19 days now and this is our 18th in the hospital (with 8 weeks to go, Lord willing!). There have been days when these verses were read over and over again; during the first week especially I needed reminders of God’s goodness, control, and love.

Below are 5 verses which seem to always be finding their way from the plastic, gray drawer and across the fake wooden top of my desk. These are the top 5 verses I have found comfort in during our high-risk pregnancy.

“Because of his strength will I wait upon thee: for God is my defense.” Psalm 59:9

I love this verse; David spilling his woes, fears, and impressions of his enemies, yet, in the end he determines that he will wait on God because He is his defense. Realistically, I don’t have enemies; I’m not being hunted by villains or persecuted by crooked family. But I do have enemies of the heart: fear, doubt, and faithlessness constantly harass me. 

Simple, ordinary fear pummels high-risk pregnancy (fear of labor, fear of the unknown medical questions, fear of the worst case scenario). Because the strength of my enemies I will wait on You, LORD God, because You are my defense and so much stronger than the strongest foe I face. 

“For God hath not given us the spirit of fear; but of power, love, and a sound mind.” 2 Timothy 1:7

I know that 10 weeks of bed rest is the perfect time to bond with my little, rest, and prepare for the upcoming labor and life to follow. But it is so easy to let the days be consumed with the spirit of fear!

I love that God has not only not given us fear but He has given us power, love, and a sound, controlled mind. As Christians, we can literally say to our mental minds, “Is this thought powered by fear? Because, if so, it is not of God and it no longer needs my attention.”

We can confidently enjoy God’s gifts of power, love, and a sound mind; we don’t need to be a doormat to fear-filled thoughts.

“And Adam knew Eve his wife; and she conceived, and bare Cain, and said, I have gotten a man [with help] from the LORD.” Genesis 4:1 

I love this verse because it is simply so simple. The very first birth of the entire world was followed by words spoken by a woman who had never before experienced labor, never talked with a doctor, and never even heard the term “breech position.”

And at the end of her experience she simply said, “I have gotten a man from the Lord.” By His kindness, by His great creativeness, by His power, and by His help, she received a man-child.

And guess what, sweet, preggo person? So have you. It’s the very same Lord Who walked with Adam and Eve, Who gave them a child, and Who helped her through labor that is giving you your child.

During my high-risk bed pregnancy, and all the unknown days ahead, I want to remember “I have gotten a man [with help] from the LORD.”

“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: I will make mention of Thy righteousness, even of Thine only. ” Psalm 71:14, 16

This has been one of my go-to verses from the moment we discovered Uriah may have health issues. And once I was admitted to the hospital for an early membrane rupture I again turned to this verse (I was actually repeating it to myself as we drove to the hospital).

Why? Because it gives me purpose. I will hope continually (as in I will keep on hoping when hope seems ridiculous). I will praise You more and more (because You Lord are worthy of praise even in what looks like our tragedy). I will speak of Your righteousness and salvation all day (because these are the only things worth speaking of and there are people in this hospital Who need to know you and the numbers of them are unknowable!). I will go (to bed when I feel restless, to the ultrasound when I don’t want to hear bad news, to get another heparin shot …) in the strength of the LORD.(because I have no strength or courage of my own …) I will make mention of Your righteousness only (because it is this righteousness which makes our lives worth living).

See how deep, how real, and how applicable these words are? They’re life-giving and doable and beautiful.

“All the paths of the LORD are mercy and truth unto such as keep His covenant and His testimonies.” Psalm 25:10

Finally, a last reminder of God’s amazing purpose and kindness in our perfectly imperfect pregnancy. From a human standpoint our pregnancy looks riddled with “mistakes.” A misdiagnosed miscarriage, a 20 week diagnosis of Hydrocephalus, an early rupture at 24 weeks with a following discovery of Lobar Holoprosensephaly, topped with 10 weeks of hospitalized bed rest and countless unknowns until our little miracle makes his appearance.

From a human viewpoint, it looks bad.

But, sweet people, it is anything but. All the paths of the LORD are mercy and truth. All of them. From the moment Uriah Lee was conceived, fashioned in the image of God, and formed with the Creator’s own hands, his path has been covered with God’s mercy and truth.

This isn’t a mistake. This isn’t an oversight. This isn’t a punishment. This isn’t bad. This isn’t the end of the world. This isn’t something to change or even wish away.

This is a path God has given us and it is filled with mercy and truth. Every day is filled with His grace. Every moment I spend in the hospital is overflowing with His goodness. Every hour Uriah remains in my womb is a gift. And every day following his birth, whether hard or easy, healed or disabled, is full of mercy and truth and graciously given by God.

And it’s the same for you, preggo Momma. I don’t know what sort of pregnancy you’re experiencing. I’m not sure if you’ve been labeled high-risk or are experiencing some trauma.

But, God’s Word is true. And every path He lets His people walk … you can guarantee it’s covered with mercy and truth.

What Scriptures brought you comfort during a hard season of your life? Share with us below in the comments — I love hearing from you! 

Love, blessings, and coffee,

Frannie