Baker's Weekend Getaway

I had been begging for a weekend getaway with Brian and Baker.

Itching to pack up and head south to the coast for a Cosmo's fish sandwich and some sand between my toes.

Or even north to Tennessee, to introduce Baker to the Chattanooga Choo Choo and the aquarium.

I got my weekend getaway, all right.

Almost forty-eight uninterrupted hours with my two boys.

Unfortunately, we were booked in Room 203 at one of Mississippi's finest, 

and dined on hospital food and takeout.

I'm not sure when it started.

Baker had been throwing up for a few days, 

but I attributed it to the antibiotics he was taking for strep throat.

But then, he started moaning, running a fever, and acting uncharacteristically lethargic.

He would be totally fine, then very, very sick.

Like the picnic I posted about a few days earlier - 

we were having fun, making memories, waving at neighbors, 

and then all of a sudden, Baker was throwing up everywhere.

After his bath, he was fine again.

This happened on and off for a few days.

Everyone who saw him said the same, "He's just not acting like Baker."

And, I know it sounds silly, but he smelled sick.

I knew something was wrong, but I didn't know what.

By Friday, it had escalated.

We left school that afternoon bound for his pediatrician's office.

Almost immediately after loading him into his car seat, he threw up.

I pulled over, cleaned him up, and wrapped him in a cotton blanket, 

as he had yucked on all other spares.

By the time we pulled into the parking lot, he was vomiting uncontrollably again and had extreme diarrhea.

He was crying, and so was I.

We were a sight for sure!

The doctor did a stool sample and a CBC, and determined Baker has Rotavirus.

They admitted Baker to the hospital immediately for severe dehydration.

If the doctor hadn't seen the evidence, she might not have believed me.

This smile is quite deceiving.

Upon arrival, they weighed him, took his vitals, and prepped him for an IV.

That was the worst.

The IV attempts.

Because he was so dehydrated, his veins were much less prominent.

The first time we went into the procedure room, three different nurses stuck him five different times.

I watched.

As they held him down, and wriggled the needles this way and that.

As he screamed bloody murder.

I watched.

And I prayed out loud. 

And I kissed his face.

And sang in his ears.

And combed my fingers through his hair.

It was awful.

I finally jerked him up off the bed, out of the restraints, 

and just held his little shaking body until he fell asleep.

The next shift of nurses came in.

The doctor was adamant he get an IV, so they tried again.

Brian was there by then.

The three of us held each other as they tried unsuccessfully three more times.

A few hours passed, and  because his dehydration was worsening, they tried a feeding tube through both his mouth and nose.

Again, we held him down as they forced tubes through his screaming.

As we predicted, this was unsuccessful. 

Baker gagged the entire time and was convulsing.

I was close to wrapping him up and walking out.

I promised to keep him hydrated through the night - waking hourly to feed him.

His blood work Saturday morning evidenced slight improvement.

We continued bottle feedings and diligent prayers for our little.

And by this morning,

he had a wet diaper, and tears, and even a runny nose.

All things that were absent in the presence of dehydration.

Those of you who follow me on Instagram and Facebook, saw pictures of smiles in the midst.

That's what I wanted to take away from the weekend.

Nurses and doctors who were present for Baker's birth visiting their favorite patient, 

Bama scrubs to rival their State ones,

blowing kisses and kisses and kisses,

playing on his daddy's iPad, 

rocking out during breathing treatments.

 

That's my boy.

He's a fighter.

A smiler.

A day brightener.

His symptoms will likely continue for the next several days.

The doctors cautioned against relapse.

We will keep him out of school this week, in hopes that he will continue to heal and gain strength.

This is the tough part about being a working mama.

I need to work, but I need to stay home with my baby.

This is still new territory for me.

And I'm slowly learning my way, the perfect balance of the two.

I'm still on the hunt for a weekend getaway.

One that doesn't involve checking vitals every four hours and changing yellow highlighter colored poo with a smell that just won't quit.

When in Doubt, Picnic

Brian surprised me by getting home before me today.

Yippee skippy!

This hasn't happened since he started working in Tuscaloosa.

 

We took advantage of the beautiful day, and took the party outside.

Because an evening this lovely practically begs for a picnic in the front yard.

 

 

This, my friends, is just what I needed.

We have had a super wonderful, super hectic week.

 

Yesterday, we went to Children's Hospital in Birmingham to see a

Pediatric ENT.

We went for two reasons:

One, Baker has had strep five times in about seven weeks,

and two, we still needed to address his hearing.

 

This was the most perfect visit.

I fully believe the people there have been strategically placed to brighten days, cure hurts, and lift spirits.

And they did just that.

From the red wagons, to the easy smiles,

many of my prayers were answered in a single doctor visit yesterday.

 

We started the visit with an Audiologist.

I could have hugged her.

She was so wonderful with my baby boy, and also with his nervous mama.

Baker just gravitated to her, and she was so informative.

She first did the same hearing screen that all babies have at birth.

 

A side note, Baker passed his hearing screen in the NICU,

but has yet to pass another hearing test.

 

After this, we went into a sound proof room.

For a moment, I pretended I was competing for the diamond crown in Miss America.

Tucked away in the sound booth so I wouldn't hear Miss Oklahoma's scripted answer for world peace.

I had traded in my black skinnies for sequins and ... ahem.

 

The Audiologist went outside the room and made sounds of varying pitches and volumes in several different monitors to see how Baker responded to each.

 

He did really well acknowledging sounds on his left side,

but never seemed to notice the noises on his right.

This could be because he was tired, it was at the end of the test,

there is fluid in his ears, or because there really is a hearing deficiency.

He presented below normal range in all areas.

And while this was not the news we wanted to hear, we were comforted in their plan to couple results of both the Audiologist and ENT and proceed from there.

 

We then saw the doctor, his nurse, and his nurse practitioner.

They were all wonderful.

They checked, and scanned, and swabbed, and listened to, and shined light on, and explained, and comforted.

 

This Friday, May 3, will be a big day for Baker Boy.

We will go to Children's Hospital early that morning to have tubes put in his ears, adenoids taken out, and a brain stem response hearing test.

It is described in detail here.

 

This test is one we have been considering,

but wouldn't even think of putting him to sleep for a hearing test.

However, this is the perfect opportunity to combine the procedures.

The Audiologist described it as a hearing test that takes his participation out.

And since the two will be done in conjunction, we will be able to tell if it was all of the fluid in his ears causing the negative results, or if there really is a hearing problem we need to address.

 

We will likely have the results before Baker is out of recovery.

They promised he would be new as new by Friday afternoon.

 

Children are incredibly resilient.

I am daily amazed by Baker's strength.

 

As you say a prayer for Baker, please also say one for a sweet friend.

He is having the same surgery on Monday,

and I think his mama is as apprehensive as I am.

 

We covet your prayers and well wishes.

In All Things

This morning, I woke up before the alarm sounded.

Before the sweet melody of my baby boy calling for his mama drifted over the monitor.

Before the coffee did its glorious thing indicating my morning vice was ready to awaken my sleepy self.

Before the sun's light and birth broke the horizon.

So here I sit, 

quietly, careful to not wake my two sleeping blessings.

I have already put the computer down twice.

Tiptoeing to my bedroom and then to Baker's.

I had the chance to do something I rarely take the opportunity to do.

To say a prayer, wish a blessing over both my sleeping husband and my sleeping son.

What a gift these two are.

An evidence of God's faithfulness.

An answered prayer.

Brian, an answer to my parents', who began praying from my birth for a Godly man for their daughter.

Baker, an answer to many prayers, who has been a source of incredible life and love.

And that's what is resonating on my heart this morning.

Thankfulness.

I have so much, the world offers so much, that could steal my joy.

Cause worry, and fear, and dread, and hopelessness.

But, this life, this one life I get. 

I choose to live in joy, in love, in hope.

I took out my camera as the computer warmed my knees and began scrolling through the pictures of yesterday.

Just another Saturday.

Not really anything out of the ordinary.

But, with every click, as my skin stretched across my face, my smile brightened, and my eyes welled with joyful tears.

Thankfulness.

I forget that sometimes.

To be thankful.

In all circumstances.

But then I am reminded of new mercies and amazing grace.

I see azaleas dancing in the morning breeze.

I see books and toys covering my floor, evidence of a fun late night play time with my little. 

I see laundry mountaining on my loveseat, and am thankful for a husband who does both his chores and mine.

I hear the soothing hum of the humidifier, and have to go take one more peek at my sleeping angel. 

I hear my big bear of a puppy dog step out to greet the morning, and do the most precious old man stretch.

I see. And I hear. And I love.

I continued with my camera.

And I saw these.

Ones I took during Baker's bath.

And I smiled some more.

And I think I even let out some sighs. 

The deep breath. 

Life is very, very good sighs.

Because, even in a makeshift bathtub on a Saturday evening, there is thanksgiving in this house.

There's stirring, and movement now.

There's more I could say.

There always is.

But none of my words compares to His word.

"Rejoice always. 

Pray continually. 

Give thanks in all circumstances, for this is God's will for you in Christ Jesus."

1 Thessalonians 5:16-18

My Favorite

As a teacher, I vowed never to ever have a favorite student, 

if you asked, I couldn't choose an absolutely favorite dinner,

my favorite color changes every year,

but favorite day.

Easy peasy.

Ask me.

I will tell you the same thing.

Every single time.

Saturday!

This girl right here,

I love a Saturday!

And based on these smiles, I think my boys feel the same.

They begin with morning snuggles and sweet sugar.

And playing with my silly little monkey.

Then, I broke Mommy Rule Number 654, and gave my boy biscuits with syrup this morning.

I swore he would have nothing of the sort.

Ever.

Yep, one more thing I have crossed off of my Never Will I Ever list.

I'm not sure if he liked the syrup.

What do you think?

Itty bitty toofie love.

Then, we made a really tough move from the kitchen to the living room for some silly face making with Daddy.

And finally got outside to enjoy the sunshine.

Saturday.

My favorite.

Making memories with these two.

It wins every time.

Easy peasy.

Blogging is not for me

I have said it all along.

Blogging is not for me.

 

As blogging became the new "it" thing.

Blogging is not for me.

 

Even while I was immersed in reading others' blogs.

Blogging is not for me.

 

Praying alongside them as they struggled with infertility,

battled cancer with their children,

shared life and love, and bared their souls for the world to see.

Blogging is not for me.

 

We miscarried, and then struggled getting pregnant again.

Blogging is not for me.

 

We found out we were having a baby boy!

Blogging is not for me.

 

We found out there was a 1 in 6 chance our William Baker Bell

would have Down Syndrome.

Blogging is not for me.

 

We celebrated with family and friends and shared the joys of being pregnant,

captured ultrasound pictures and forwarded them to all of the doting aunts,

heard heartbeats and felt kicks, and picked out bedding, and put together the perfect room, and did everything we could to prepare for the baby who would soon greet us.

Blogging is not for me.

 

We met and fell instantly in love with our Baker and life was forever changed.

Blogging is not for me.

 

From the NICU, we sent out hourly and daily updates with stats, most recent reports from the doctors, weight gain and loss, feeding celebrations and setbacks, pictures, fears, his diagnosis, to those anxiously awaiting.

Blogging is not for me.

 

A friend even suggested starting a blog to share Baker with the world.

Blogging is not for me.

 

Now, 110 posts in, I still have days when I say it.

Blogging is not for me.

It still baffles me that people read this, seek out our story, celebrate with us, laugh with us, cry with us, share life with us.

I am daily humbled at the overwhelming response, publicly and privately.

Most often, I write like blogging is not for me.

I write authentically, boldly, honestly, sometimes humorously about our life and how the Lord uses us to bring honor and glory to His kingdom.

 

Thank you for being here.

Thank you for visiting and leaving your mark on our lives.

We are coming daily closer to celebrating our first year with Baker.

God has used you in incredible ways to provide us with encouragement, strength, knowledge, and hope.

I am forever thankful.

Maybe this blogging thing will work out after all.

 

Besides, who can keep pictures like this tucked away in a computer file.

 

Everytime.

"Say cheese, Baker."

And this is what I get.
Everytime.

 

 

Be still my heart.

 

 

Friends and Family

I've shared before how fortunate we are to have such wonderful friends and family and this past week has proven just how invaluable they are over and over and over.

 

My mother-in-law picks Baker up two days a week.

I am so grateful for her.

And Baker loves his BeBe!

 

 

Yesterday morning, my father drove over to visit for a few hours.

I spent more time visiting than picture taking.

 

But as the three of us were all talking, and reading,

and playing with Baker's favorite ball, I noticed something.

Baker's hand and my dad's kept finding one another.

Regardless of what we were doing, their hands were touching.

And this, being the sappy girl I am, touched me so.

 

My dad's hands, weathered, and scarred, and etched with memories of bandaging skinned knees, and turning pages of favorite books, scrambling his world famous "Daddy Eggs."

A work of art, having touched so many lives in his short fifty-seven years.

 

And Baker's, free from any. A blank canvas ready to make their profound mark on the world.

 

It was a special morning, and a special memory I will forever cherish.

 

 

 

Brian and I have been in full-on house selling mode,

and a special friend's birthday provided just the reprieve we needed.

We (and by we, I mean Brian) traded the drills, and paint brushes,

and toolbelts, for an afternoon at Summer Sno

and then dinner at DePalma's.

 

That's a killer combo right there.

 

 

Getting some snuggles before leaving my Little with his Nana, DD, Uncle David, and Jasmine. Yes, they are wonderful babysitters, and no, they are not available. I have kindly booked their calendars indefinitely.

 

 

These girls.

I love them so!

 

Happy Birthday, Mal!

 

And happy friends and family weekend to me.

There's nothing better than making memories and cherishing time spent with loved ones.

Eleven Months

This time eleven months ago, I was getting ready to meet my baby boy.

 

I had been waddling around for months,

feeling him wiggle and squirm and have crazy hiccups,

and instinctively resting my hands on my growing belly,

and singing his name,

and rocking in his chair,

and thumbing through the clothes in his closet,

and organizing diapers and wipes and washcloths and towels just so,

and packing bags and wishing and hoping and dreaming.

 

I had imagined this little being we had been ogling over,

but never, in all my wildest dreams,

could I have fathomed this.

 

The love he brings to our family is so big.

The way he smiles with his whole body,

and pats my shoulder when I hold him just like I do his,

and nestles his cheek underneath my chin and mutters,

"mmmmm" like he's perfectly content to stay there forever and ever.

The way he grabs my cheeks with both of his hands and plants a wet one right smack dab on my kisser,

and giggles when his daddy sends him soaring towards the sky,

and loves life out loud.

 

Big time, out loud life loving.

 

Happy Eleven Months, Baby Baker.

 

 

We love you, sweet angel baby.

We love you so, so much.

Golly, y'all!

We started off the week with a doctor's appointment with Baker's Pediatric Opthamologist.

It was a great visit!

 

The doctor checked his eyes and reported that glasses were in Little Man's near future.

Fortunately, his farsightedness astigmatism have not increased in severity.

Unfortunately, they have not decreased either.

We'll recheck in October and create a plan at that visit.

 

For some reason, it was extremely hot in the office.

So, we shucked Baker's shirt.

 

Shirt shucked. Spring sprung.

Glory.

 

 

Another day.

Another doctor visit.

Bronchitis and strep.

Bleh.

But, have you ever seen fingers and baby legs that made a bandage look so darn cute?

Bugs and Scooby have never been so lucky.

Golly, y'all!

 

 

Antibiotics ain't got nothing on this kind of medicine.

 

 

It's tough to beat baby snuggles,

but I think my favorite part of the week so far was this.

 

Last week, Baker's Speech Therapist told us that he needed to work on using objects for their intended purpose.

Toothbrush to the mouth, brush to the noggin, washcloth to the face, and phone to the ear.

And would you know, a few short days later, 

with Moriah Peters belting "I Choose Jesus,"

Baker Boy picked that phone up and sang right along.

 

That boy. I tell you what!

Golly, y'all!

 

 

My big boy is becoming less and less interested in bottles and sippy cups and wants to drink straight out of a cup.

An Alabama stadium cup to be exact.

Attaboy, Bake.

 

 

I just tucked Baker in for the last time as a ten month old.

Tomorrow, my boy will be an eleven month old.

And tonight, I will go cry myself to sleep.

An almost one year old.

Golly, y'all!

The Upside of Down

I had a moment this afternoon that took me right back to the very beginning.

The feelings of helplessness.

The feelings of sheer worry.

The feelings of my hopes and dreams drowning.

The feelings of loneliness.

The feelings of a mama scared to death about the future,

and what it may or may not hold.

 

We had to go to the hospital for Baker's blood work today.

We sat in the same waiting room, were called to the same business office to chat with Mrs. Charlotte and be branded with the ever familiar hospital bracelet, were carted to another waiting room with the same CourtTV blaring on from the box on the wall, then sat in the same cold, blue recliner in the sterile room smelling of alcohol and adhesive

waiting for the dreaded stick.

 

And then, it happened.

 

Baker blew one of those adorable raspberries, fake coughed,

and then laid his head on my shoulder, patted my back,

and let out out a loud breath, a hearty, content exhale.

And that groan, and those love pats, and silly boy sillies,

conveyed in his almost 11 month language,

"It's all good, Mama. This is all good. I'm all good.

Mama, we got this."

And then, I snapped out of it.

 

We hadn't been there in months and months and months.

In the beginning, it was every couple of days.

I was terrified that would be our new normal.

And if it had, well, that would have been okay, too.

 

But it isn't.

And I am thankful.

 

In the beginning, those feelings pervaded.

But now, I think my feelings align with those of most other mamas.

Feelings of pride and joy so intense that I would walk around with "Baker's Mom" plastered to my chest I'm so darn pleased he's mine, and I am his.

Feelings of love, such great love.

 

I found myself just gazing down at him this weekend.

Thinking about where he was and where he is.

The tears fell as I watched him interact with his toys,

as I watched him pass his cookie from hand to hand,

as I watched him "tap your hand on the green light," over and over in perfect sync with the elicited rhythm of his favorite drum,

as I watched him get frustrated and then get even with that dadblasted crawling thing.

Things that I may have taken for granted if he wasn't made just perfectly him.

 

He is incredible.

And I know you other mamas and daddies see that in yours too.

Incredible.

 

Perfectly made.

Every nook and cranny and muscle and bone. 

And those parts, crafted together so beautifully.

And this wee little baby, daily changing into my little boy.

But don't let me fool you, that Baker Bell will always be my baby.

 

I am a better person, a better mama,

a better friend, a better wife for this journey with Baker.

 

I find joy in each and every day.

 

Meredith, you told me I would, and you were right.

I am thankful to find joy in each and every day.

The little and the big and the littles that ever so methodically lead to the big.

 

I see beauty.

 

I am often told Baker doesn't look like he has Down Syndrome.

I think that's intended as a compliment,

but I don't mind that he looks like he has Down Syndrome.

He does.

He has the physical characteristics.

And that's ok.

I think children with Down Syndrome are even more beautiful than typical children.

Seriously.

You've seen Baker.

But have you seen our friends Walker or Wren or Ruthie or Ethan?

Gorgeous.

In every sense of the word.

Maybe, it's because God has given me eyes to see beauty differently.

Or, maybe, God has made children with Down Syndrome specially.

Beautifully.

 

I see the good in others.

I see God's faithfulness played out daily.

I see answered prayers.

I see, and live, and feel strength.

I see life.

I see willfulness.

I see sweetness.

I see love that's infectious.

I see hope.

 

The Upside of Down.

 

Up wins.

 

Up always wins.

Books

"The more you read, the more you know, the more you learn,

the more places you'll go."

- Dr. Seuss

I love reading and I always have. I am linking up with Kelly today, as she features her favorite children's books. I am doing this in two parts. One, just good ole' books to read aloud to all children, and the second, books that are especially beneficial for children with special needs.

Some of my favorite books to read aloud are ones that are upbeat, repetitive, involve children in the reading, and allow for fun voices and voice inflection. These are fun to read aloud to a classroom of elementary students, or to my most captive audience of one. The one and only, love of my life Baker Doodlebug Bell.

 These two books are fun for all children - both typical children and children with special needs. Although no guarantees adults in the room won't be drawn to these read alouds as well.

The Pout, Pout Fish

 

The repetition, and sing-song chorus in this one are too much fun.

Don't Let the Pigeon Drive the Bus

 

There are several Pigeon books, all fabulous!

They each involve the audience in not letting the ever-persuasive pigeon get his way.

 

And these three are books that Baker's therapists have promoted time and again. These all elicit a cause/effect relationship, which is vitally important to all children, but especially children with special needs. Even if you have a typically developing child, I would encourage you to allow your children to have exposure to these types of books.

 

Baker loves "The Wheels on the Bus!" It is a song we have been singing probably since the day we brought him home from the hospital. Although, then, corny me was likely singing the "The Wheels on the Murano..."

 

But this edition allows Baker to press the buttons on the side of the book to make the given noise. We rarely travel anywhere without this book. And I rarely make it a full day at work without humming this to myself. It's permanently ingrained in my brain, threatening never to leave. Ever.

 

The Wheels on the Bus

 

 

Pat the Bunny,

and other touch and feel books

 

 

Children with Down Syndrome are typically very sensitive to textures. Baker's occupational therapy frequently involves various objects and surfaces. Last week, they even sat him in a bucket of dried beans! We practice rubbing the bottoms of his feet on leather, denim, cool surfaces, hard surfaces, carpets, sand, grass, etc. so that when he begins walking, he will feel comfortable walking anywhere. Books like Pat the Bunny are great for increasing his exposure to differinng textures.  

 

Tickle Monster

 

 

We got this for Baker for Christmas. It comes with Tickle Monster gloves and we have a blast reading it together! There is always a serious case of hiccups accompanying the close of the final page.

 

Most of the time, it doesn't matter what you read with your child.

Just read!