A beautiful heart

Sunday night, I wrote a post, "Be in the Moment."

And I have.

It's meant fewer tweets, and posts to Instagram.

It's meant delayed responses to texts, and lingering at the dinner table.

It's meant rocking Baker long after he drifts off to dreams, and trips out of town on school nights for time with friends.

It's meant slowing down the pace, and leaving items undone.

It's meant time spent making memories and being in the moment with those I love the most.

Being present in each part of the week instead of just living for the weekends has made it a wonderful week.

It has made me find the special in each day.

When you really engage in conversations, and walk through Target smiling at fellow shoppers, when you stop to pray with coworkers in the teachers' lounge, and write notes of encouragement, when you drop your agenda and let another dictate the conversation, each day is special.

Thank you, Jesus, for the gift of time.

Thank you, Jesus, for the gift of relationships.

Thank you, Jesus, for the gift of time to strengthen and deepen relationships.

On Wednesday, I took a half day at work to take Baker to Children's Hospital in Birmingham.

Throughout my pregnancy, the doctors monitored Baker's heart, 

especially after we learned of the heightened chance of him being born with Down Syndrome.

In the NICU, the specialists kept a close eye on all things, especially pertaining to cardiology.

But, honestly, since then, we haven't had any check ups.

Our pediatrician said it would give her the "warm fuzzies" if we saw a cardiologist.

Now, I try not to worry too much.

And many times I fail.

For whatever reason, I worked myself into such a tizzy before this appointment, sure this would be the appointment we got bad news.

My devotional the night before was about Jesus giving, and Jesus taking away.

I was a hot mess.

Baker and I got to Birmingham too early, and stopped at McDonald's to share an ice cream cup.

You know, celebrate before, think good thoughts, happy heart thoughts.

 We strolled through the Women's and Infant's Center, the same place I had the Comprehensive Level II Ultrasound the Friday before Baker was born. 

Talk about a rush of emotions.

In the waiting room, we met a little girl who had graduated from RISE six years ago and was now in a regular education classroom in a public school system.

Baker was a perfect angel.

We sang "Bringing Home a Baby Bumblebee" something like 37 times.

He kept loving on me and rubbing my back.

 We read Highlights and rode the horsey down to town, down to town, down to town, careful not to let Little Baker fall down.

Then the nurse called us back.

She took his height and weight.

34 inches and 25.4 pounds.

Then she hooked up 10 electrodes to his bare belly and chest.

Then we waited some more.

We waited in the waiting room

Then we waited in a holding room.

Then the angel nurse took us to a very warm room.

I met the doctor.

I undressed Baker, and placed him on the bed, which he did not like very much at all.

Using an ultrasound machine, the doctor carefully inspected all of the nooks and crannies in his chest.

Baker got antsy.

The nurse gave him a lollipop and blew bubbles.

The doctor inspected some more.

And then some more.

And then, Baker signed "bumblebee."

And right there in that warm room, with the ultrasound machine capturing my son's beautiful heart, the doctor started singing "I'm Bringing Home a Baby Bumblebee."

And with those few words and few notes, he earned platinum status in my book.

He wiped Baker's chest, sat him up straight, turned on the lights, and said words I will forever remember.

"Baker does not have a Down Syndrome heart."

He checked and rechecked for holes and murmurs.

Both very common in children with Down Syndrome, and both very scary.

I already knew it.

The doctor confirmed it.

Baker has a beautiful heart. 

And one that has most certainly captured mine.

"For you created my inmost being; you knit me together in my mother's womb. 

I praise you for I am fearfully and wonderfully made; your works are wonderful, 

I know that full well. 

My frame was not hidden from you when I was made in the secret place, 

when I was woven together in the depths of the earth. 

Your eyes saw my unformed body;

 all the days ordained for me were written in your book before one of them came to be. 

How precious to me are your thoughts, God! How vast is the sum of them!"
Psalms 139:13-17

...and their Answers

In my previous post, I shared my love of questions.

There are a few questions that I especially love to answer: questions about my little.

I am by no means an expert on Down Syndrome, but in these few short months, I have tried to research and learn as much as my little brain can hold to provide the best care for Baker.

 

Here are the questions I referenced...

 

How is therapy?

How often are you going each week?

How is Baker tolerating one-hour sessions?

What is he working on in physical therapy?

What are Baker's occupational therapists' goals?

What manipulatives is he using in therapy?

How is he eating?
How is his health, especially his heart?

What are your struggles right now?

 

And here are their answers broken down by topic...

 

Therapy

 

Baker attends two 30 minute sessions of therapy twice a week for both occupational and physical therapy. Many of the skills he is working on in one overlap in the other. In addition, he also has a teacher through Early Intervention that sees him once a week. She works from a similar list of objectives, but incorporates a lot of reading, singing, and sensory recognition as well.

 

In physical therapy, his therapists are working diligently to teach him the skills and provide him with the muscle memory necessary for sitting up. His previous goals of holding his head up and rolling over have been mastered! To do this, he is spending more time on a wedge/incline, Bumbo and bouncy seats, and the exercise ball. His therapists still encourage tummy time and time spent sitting up with our assistance. It is important that he learn to associate the floor as a source of support. This is necessary for sitting, standing, and walking.

 

This week, he did something incredible in PT - when he started to tilt to one side, he braced his body by using his hands for support. This is a huge milestone for a child with Downs! We had a throw-down celebration right there in Therapy Room 1!

With Baker, we find ourselves celebrating a lot!

 

In occupational therapy, his main goal right now involves reaching for items, holding on to them, and releasing them. The manipulatives for this objective are toys, toys, and more toys! Anything bright and loud makes the toy even more appealing to Baker and useful for accomplishing this task.

 

This has been a goal that I have been able to watch him reach incrementally over the past few weeks. It has been amazing to see his strength and determination. He is such a little fighter. At first, he couldn't make his arms do what his brain wanted, but slowly, he has taught his arms how to extend forward and grasp the desired object - most often his mommy's lips, his daddy's beard, or his elephant "phant phant" that hangs from his car seat. To see the drive Baker exhibits to overcome a task that is too difficult is such an inspiration.

Therapy is hard, hard work disguised as playtime.
Who can argue with that?

 

Therapy is a learning session for Baker, obviously. But more than that, it is a time for us to learn how to help him accomplish these developmentally appropriate objectives. If he was only to do these things in therapy for 2 hours a week, he would be lagging far behind his "typical" peers; but Brian and I devote ourselves to our son, and his development - we study, we observe, we mimic, and Baker wows in response!

 

Each week, we are able to go into therapy with a praise.

Something new he has done.

One more thing to check off of Peabody's Developmental Motor Scales Analysis.

Go Bake Go!

Eating

 

The kid's a machine. Seriously.

 

As I was reading our many resource books, a commonality shared by each was that a child with DS typically has difficulty feeding. We are so thankful that Baker has no problems eating - he must take after his daddy!

 

As a newborn in the NICU, he was tube fed for the first few days of his life, then we transitioned to nipple feeding, and finally I tried breastfeeding. He breastfed on and off for the first 8 weeks of his life. Due to hypotonia and familiarity with the bottle because of his time in the NICU, I was not very successful getting him to latch on. Since then, I have been exclusively pumping, and supplementing with soy formula. He is currently taking about 5 1/2 ounces every three hours. In addition to the bottle, he has accepted spoon feedings with ease. He eats oatmeal with either apples or bananas for breakfast, and has vegetables at lunch and dinner. So far, he's tried peas, carrots, squash, and green beans.

 

Verbal Skills

 

Baker is a chatterbox! I can literally hear him talking as I am typing in the security code to enter his school. I love it! He oohhs, coos, and squeals.

Everyone talks about how much he talks!

 

He is not currently in speech therapy, but we are doing many things at home to be proactive with his speech: we encourage him to mimic vowel and consonant sounds, make kissy faces, create different shapes with his mouth, stick his tongue in and out, drink through a straw (this is something we've just begun), blow bubbles with his mouth, and manipulate his tongue in various positions.

 

To be more specific, we don't have designated therapy sessions at home, but we are very intentional about incorporating these things into our day. It has become natural for us - whether we place a toy he must reach for on his high chair, or we sing a call and response song with him as we are preparing dinner, or we sit with him on the floor encouraging stability and strength. Just like hour long therapy sessions twice a week, and frequent doctor visits, this is not a hassle, nor is it an inconvenience, it's just something we do. Like you would roll your daughter's hair or make your son his favorite sandwich for lunch.
 

Something we love to do to help our son surpass the world's expectations of him.

Health

Baker is in good health.
The only medication he takes is a supplement - Vitamin D. And the occasional gas drops. Those things are liquid gold.
He has a nebulizer (breathing machine), but we only use it on an as-needed basis.

We are monitoring his vision, hearing, bilirubin levels, and heart.

Baker is both farsighted and has astigmatism. We will visit his pediatric opthamologist again in April to reassess this diagnosis.

He failed his hearing test in August, but I am sure my boy can hear. Make that absolutely, positively, convinced he can hear - he perks up when I pop the cap off his bottle, grins ear to ear when I turn the bath water on, and bounces up and down when his daddy pulls his truck into the garage. Nevertheless, we will go back to reevalaute this in a few weeks.

Baker's bilirubin levels have been elevated since birth. Many children are born with jaundice. Normal range is 0.5-1.0; Baker's was over 9 at birth. We are now down to almost normal range, but it is still something a pediatric gastroenterologist oversees. We go back on November 29 for bloodwork to check on this. I can't think of a better birthday present for me than a healthy diagnosis for my sweets.

Lastly, his heart. This is something we have been monitoring via ultrasound since preliminary bloodwork indicated there was a heightened chance of Baker being born with Down Syndrome. He was born with a PFO on his heart. As you will read here, this is something that does not require treatment, and is not a source of concern for our doctors.

I daily thank the Lord for Baker's health.

 

Struggles

 

I'm going to try to be honest here.
 

If I were to say I am not struggling with anything, I would be dishonest.
But, while I try to be open and honest on here, there are some struggles
that I choose only to share with my husband, or my mom, or my small group of girlfriends.

I hope you will respect that, and instead of praying for a specific area of weakness, you will just lift us up.
God knows our needs.
 

I struggle with discerning God's plan in all of this. How can I use my platform as a wife to Brian, mother to Baker, child of Christ to bring honor and glory to Him.

 

I struggle with the future.
What's to come?
Baker's education, his mental and physical abilities, his health, and so on and so forth.

Jeremiah 29:11 states,

"'For I know the plans I have for you,' declares the Lord. 'Plans to prosper you, not to harm you, plans to give you a future and a hope."

A friend in Sunday School also shared a verse from Isaiah today,

"'For my thoughts are not your thoughts,

 neither are your ways my ways,' declares the Lord.
'As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9
I read that and I hear those words, and my struggles seem trivial.
God has plans, thoughts, and hopes for our Baker boy, and that's enough for me.

I will try to do another Q and A in a couple of months as Baker grows and progresses. In the meantime, ask and I will tell. You know I love talking about my little bitty.

In the words of the wise Porky Pig,
"That's All, Folks!"

For This Child, We Have Prayed: Baker's Birth Story

My husband, Brian, and I had been praying for a baby; trusting in God to provide us with a baby to love after a devastating miscarriage and several months of trying unsuccessfully to get pregnant. I will never forget that Wednesday morning in September. After my alarm went off, I went immediately to the restroom to take a pregnancy test, got back in bed, and prayed over the results with Brian. After two very long minutes, he went to the restroom to read the results; his face aglow as he proclaimed news of a baby on the way! Oh what joy! We held each other and cried, overwhelmed at the faithfulness of our Father to answer our prayers.

Over the next few weeks, we shared our incredible news with excited family and friends. Everyone celebrated the arrival of Baby Bell with us!

In December, I received a call from my doctor with the results of our quad screen. Usually I talk to his nurse; however, this time it was him on the phone. He prefaced the results with an uncharacteristically muted tone. He skipped the usual small talk and got straight to business. He began, "Often these results are not accurate; in fact, many times they offer a false positive. With that being said, your child has a 1 in 6 chance of being born with Down Syndrome." I have no idea what he said next. The words resounded in my head. My whole being was consumed with this news. My husband was not home, so I sat in my dark, quiet home, and cried. Cried for the unknown. Cried for my hopes and dreams for my baby. Cried for my little boy or little girl and the cruelty of the world towards people with special needs. Cried, and pleaded with God. Cried out in prayer, because that was all I could do.

We were referred to a specialist for a Comprehensive Level II ultrasound to check for the physical markers for Down Syndrome. Our eyes were glued to the monitor as the specialist checked for a fold in the neck, absence of nasal bone, length of femur, echogenic intracardiac focus (bright spot on the heart), among others. In the midst of those findings, we learned that Baby Bell is a Baby BOY Bell!! I have never seen my husband smile so proudly, as the doctor highlighted the very obvious male anatomy. "That's my boy! That's my boy!" exclaimed the delighted daddy to be. Of the major markers, our son had one present: an echogenic intracardiac focus. (This, we learned is present in children born with and without Down Syndrome - not a very reliable marker). None of the others were found as they scanned our little boy's perfect body  and watched him wriggle and squirm and suck his thumb for his mama and daddy to see. Oh how our hearts were filled with joy at the realization of our baby's gender, perfection of his little body, and decreased chance of our son being born with Down Syndrome.

With those results, we threw out the possible diagnosis, and chose instead to focus on the upcoming arrival of our baby boy. We had a blast pondering the best name to suit our little blessing. We decided upon William Baker - William after Brian's father, and Baker after mine. Our son would be named after two men we love dearly, who have so positively influenced our lives. We sent puzzles with his name to family and friends living out of town, inviting them to put the pieces together to figure out his oh-so-perfect name

The rest of the pregnancy was filled with joy as we were showered with love and gifts to prepare for our little one's arrival. We had frequent ultrasounds to monitor the spot on his heart, which suited us just fine! We loved watching our Baker Bell flourish into a beautiful baby on the monitor in the room we became so comfortable in.

Then, to our surprise, on Friday morning, May 11, contractions began. Not the Braxton Hicks I had come to live with. Real, live contractions! Like the ones I saw in the movies. I denied the onset of labor, as I was only 36 weeks and 4 days. It wasn't time! I hadn't nested! I had left my desk at work in shambles! None of that mattered; God had planned for us to meet our baby boy on May 11.

It was a long day, it was a good day; second to saying "I Do" to my husband, it was the best day! Labor progressed slowly, but at 11:30 that night, the doctor uttered the words we'd been anticipating, "Let's have us a baby!" We called our family back in to pray together. We prayed for Dr. C., who we have grown to love and regard as part of our family. (A little side note: Dr. C. wasn't even on call that Friday night; but had taken such an interest in our sweet baby, he proclaimed only weeks earlier that he would deliver him, no matter what, and he did). We prayed for the nurses and for the health and safety of both our baby and me as we were approaching the final moments of pregnancy. We said our goodbyes, and gave hugs and kisses for the last time before becoming a family of three.

Our family walked out at 11:40, I started pushing at 11:45, and William Baker Bell arrived at 11:46. And what a sweet arrival it was! Love at first sight! My heart grew so full as we locked eyes and he was placed on my chest. Oh, he was beautiful, and he was ours. After some time as a family of three, the nurses took him away to meet the anxious grandparents, aunts, and uncles eagerly awaiting his arrival, and then to the nursery for some obligatory tests.

The next few hours were a blur. Nurses coming in and out to check my vital signs. Hushed whispers of suspicions of Down Syndrome. Family hovering, too excited to leave. Us exhausted, a long day of labor behind us.

They kept Baker in the nursery for so long, too long. He finally made his way back to us at four o'clock in the morning to say a brief goodbye before being taken to the NICU. When we saw him the next morning, he was just as beautiful as I remembered; his tiny body covered in cords, tubes protruding from his nose and mouth. My heart ached to hold my baby boy. I celebrated my first Mother's Day sitting by his side, stroking his sweet angel hands; unable to hold him or see his eyes because of the Bili lights for severe jaundice. On that day, our suspicions were confirmed. We received the results of Baker's chromosome analysis, showing that he had been born with Down Syndrome.

We shared the news of our little one's diagnosis and comforted them with these words:

"We celebrate his health, as many babies born with Down Syndrome are born with serious health complications. Praise be to God that our baby's heart and other major organs function beautifully.

While the results of this test were somewhat of a surprise to us, they don't surprise our Heavenly Father. Just as He knows the number of hairs on our baby's head, he knows the number of chromosomes in his body. He knows our baby boy, and He knows us. This is part of His perfect plan for our lives. Psalms 139:13-4 says, "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Baker is wonderfully made by our Father, who does not make mistakes. Brian and I were chosen, specially, to be Baker's  mommy and daddy, and for that, we say, "Rejoice!" What an incredible honor for us to be chosen to love and care for this sweet baby boy.

Please don't be sad for us, as we are not saddened by this at all. This is the child for whom we have prayed so diligently. 1 Samuel 1:27-8, "I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life, he will be given over to the Lord." He needs not be labeled by a disability, rather, the only label he needs is, "ours." We love our baby boy more than we could have ever imagined. He is strong. He is beautiful. He is loved.

I cannot wait for you to meet our little Baker Bell! He has stolen many a nurse's heart all over this hospital. They all sneak into the NICU on their break for a glimpse of our little angel baby. I warn you, it's love at first sight! Unspeakable joy! His little expressions keep us snapping our camera and claiming, "That one's my favorite," only to have a new favorite in the next minute."'

Maybe I was lacking the boldness I am now striving for. Maybe the joyous feelings of Baker's birth far overshadowed any diagnosis. Maybe saying it out loud would make it real. Whatever the reasons, I could not bring myself to utter the words. I did not tell people in person or over the phone; rather I resorted to sharing this news through writing, using the mask of email. And I am so glad I did! The responses that flooded in from family and dear friends were strength in my weakness. Each person offered encouragement, allowing God to use them in a mighty way. Spoken words can be forgotten. Conversations fade. Even carefully chosen words become a distant memory. But the written word, at least these written words, cannot be erased. Those letters, Bible verses, and personal testimonies are so precious to me, forever etched into my being. I will always cherish the power of the words shared with us on that unforgettable day.

After nine long days in the NICU, we brought our little home! We are human, and I will admit to moments of weakness, but the strength our God has given us overcomes. We are thankful for our gift, our precious blessing in the form of a bitty boy named Baker. We are more smitten today than we were yesterday or the day before. He is our love, our dream come true!