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