Waiting on You

Last night (Saturday), it was close to midnight before Samuel fell asleep, and I prayed over him that God would watch over and protect him as he slept. It's a strange thing... wanting your child to be safe from harm but waiting for him to have an episode.

When the first neurologist arrived around six something this morning (Sunday), I was reminded that God's plan was no seizure on night one of epilepsy monitoring (EMU). Samuel had slept well, and when the team of neurologists came an hour later, they asked questions concerning his episodes and how they normally present themselves. The attending epileptologist was grateful for my detailed descriptions and said that Samuel's sound very indicative of seizures.  She decided he would not take his medication for a second day in a row to induce seizure activity. They said we would just keep waiting.

Samuel had a long day, though. He became more frustrated and bothered by the gauze and wires, saying they itched. He played app after app, but he was just so exhausted, he wasn't too thrilled doing anything. He got a big surprise when his Aunt Jessica and Mimi came and brought a bag of goodies! He was so tired after they left that he fell asleep. While he was sleeping, another visitor came.  Daddy came and brought more cookies.

However, Samuel has been quite the tough one to break because he ignores most anyone who walks in the room - all of the nurses and doctors! He has not enjoyed getting his vitals taken or having to take his antibiotic for a cough he has / had prior to arriving. He has not talked to his nurses at all!  

Tonight ( Sunday still ), we rented a movie from the Vanderbilt DVD kiosk. The nurses told us it was like the uncool cousin version of Redbox or Netflix. They gave us a card, almost like a library or gift card, that is ours while we are here, and we can rent one movie at a time with it for free. We watched 2 tonight. Samuel thought it was great! 

It seems so simple to wait. Wait until he has an episode. Wait until we get what we need. Wait until he has a seizure then press the black button. I think that I am starting to realize that it isn't about the wait as much as it is about my surrender. I have sat in this room looking at Samuel thinking the reason we are here just cannot be possible, yet I have prayed to the Lord to protect him at least a dozen times since yesterday. Lord, if it be Your will. No matter what happens here or at home with Samuel, God is and will be exactly what we need and have been waiting for. So, tonight, as our sweet boy sleeps, if God has chosen this path for us, then I will wait.

Pictures include: waking up, smiling with Mimi, grins with Aunt Jessica, movie with Mom, napping, cookies with Daddy, and bedtime.

Be Still.

I went to bed last night with a heavy heart.  I questioned whether or not the decision we had made concerning Elias was one I was comfortable with.  I had difficulty falling asleep despite knowing that I would be waking early the next morning.  So, I wrestled with laundry, dishes, and packing bags, when I heard the Lord say, "Be still."

We woke this morning around 5:45 to prepare for our day.  Grandpa arrived around 6:30 a.m., talked with  his youngest grand boy, and anticipated his busy day ahead.  He would be watching Daniel and Samuel.  Brian, Elias, and I picked up Mimi (and Hardee's biscuits) then rushed through rush hour traffic to make it to Vanderbilt Children's Hospital five minutes earlier than we expected.


Elias was checked in, and we waited for his name to be called.

From birth, Elias has wheezed.  It's not always constant, but it never goes away.  If he's not wheezing, he's about to begin wheezing.  His wheezing has been treated with more medications than I care to mention, and we were directed to a pulmonologist at Vandy when he was 3 months old.  We were told Elias has tracheomalacia which was typical in infant wheezing.  However, with Elias' wheezing comes coughing, sicknesses like pneumonia, ear infections, bronchialitis, and a 4-day hospital stay that made us realize we no longer wanted our baby to be sick.

A week after his hospital admittance, Elias was back in the pediatrician's office with a 102 fever and wheezing.  The Children's Clinic immediately referred us back to our pediatric pulmonologist.  He was willing to see us the Monday following Thanksgiving, then per his request, we agreed to schedule a bronchoscopy the following Monday, December 3rd.

His name was called fairly quickly, and we headed back to a holding room around 9:00 a.m.  Despite having not eaten since 5:00 a.m., Elias didn't fuss.  He laughed and smiled with every single person that came in to ask us a number of questions.  I placed my hand over his chest, and much to our surprise, Elias wasn't wheezing!  The nurses heard no wheezing and said he sounded clear which would be beneficial to his procedure.  I overheard other parents explaining their children's medical histories to nurses, and I sat there with our happy baby feeling humbled.

It wasn't until 11:30 that Elias was taken back to the operating room.  I watched as the two anesthesiologists walked away with him.  My heart ached, yet I could hear the Lord urging my heart, "Be still."

The procedure itself lasted only 10 minutes.  Elias was put to sleep with a mask then two iv's were placed because babies' bodies don't always take them well - so he had two.  By 12:30, our pulmonologist was in the waiting room explaining what the bronchoscopy showed!

Our precious Elias does have tracheomalacia, an abnormal collapse of the tracheal walls.  To be simple, the cartilage in Elias' trachea is floppy and causes breathing to be noisy and labored.  He also has laryngomalacia, which is the weakening of the cartilage in his larynx.  Both of these, according to the scope, are moderate.  It was determined today that Elias has mild bronchomalacia as well.  His entire airway is weak.  He is wheezing because he was born this way, and thankfully, no treatment is necessary.  "Be still."  He will outgrow these by the age of two.

However, these findings did not explain the constant sickness Elias has.  What our doctor explained next did.  Despite how clear Elias was today, his airway was very swollen and inflamed.  The doctor noticed small spots around Elias' oropharynx (located at the back of his mouth and is the oral part of the pharynx) and that his adenoid was enlarged.  All of these help to explain some of why Elias has labored breathing, snoring, and wheezing.  He had cultures taken from his lungs today to ensure there is no infection, but our pulmonologist believes that these findings indicate one major thing...  acid reflux.

Although Elias doesn't always spit up or gag, he has the internal findings of a child with reflux.  When Elias breathes, the cartilage in his airway is weak, so he often aspirates the fluids (milk, germs, acids, etc.) back into his body causing inflammation, swelling, and sickness.

What this means is that Elias will be put on medication for acid reflux.  He has been diagnosed with reflux once or twice :) before, but small dosages never seemed to work.  Now that doctors know his condition, they can properly give him what he needs.  If we can treat his situation with medication, then nothing further will be necessary.  There are options should they not work.

Culture results will come later this week.  They will give us an indication if some or all of the swelling or inflammation in Elias' airway is caused by infection.  These results will also help determine if what Elias has actually is reflux.

All of this, and we'd still not been called back to see Elias.  I couldn't wait to see him.  "Be still".

Elias was throwing himself backwards in the nurses' arms.  He seemed angry, but he wasn't crying.  He moved as to show his frustration.  I am certain he didn't like the iv's.  They removed the one in his foot, and kept the one in his wrist covered with a small no-no.  It's like a small air cast to keep children from pulling at their cords.  Once in my arms, Elias relaxed.  A lot.  He slept in recovery.  He didn't eat.

When the nurses realized this, they sent us to a holding room so that he could rest and we could focus on getting him to drink.  Almost 2 and half hours after the bronchoscopy, Elias woke up.  He wasn't smiling, but he didn't cry.  He quickly drank 2 oz of Pedialyte while sitting with his Mimi.  We soon saw him smile.  He was still hungry and drank more. At that point, we were discharged.

Here I am, a full day later since being filled with anxiety, in complete peace.  I look over at our sweet baby and realize just how blessed I am.  Despite a few complications which are NO surprise to God, Elias is sleeping peacefully in the middle of our bed.  My heart is at rest.  I know that God is God, and all I have to be is still.  He is in control, and whatever comes next in Elias' story is God's to tell.

Be still, and know that I am God.  I will be exalted among the nations, I will be exalted in the earth!
Psalm 46:10


 

All Things Work Together

When I woke Tuesday morning (March 20) at 8:28 a.m., I found it as no accident.  On a day when I was expecting the worse (and still was), I was reminded so clearly of my favorite scripture, Romans 8:28, which states, And we know that all things work together for good to them that love the Lord...  I had no idea how timely that verse would be throughout the remainder of the day. 

I quickly got myself and the boys ready for Mother's Day Out.  Samuel had insisted on wearing his brother's John Deere hat from Grandpa, his baseball outfit, and his Scooby Doo Crocs, and I, despite my best intentions, allowed him to mismatch himself all the way into school. 

When backing out of the garage, I noticed the most beautiful tulip in our front yard...  One simple, red tulip.  My heart was overwhelmed with God.  While nothing else seems to grow in our yard other than weeds and bugs, the tree that had once been in the center of our yard had died, so Brian had planted what seemed to be rotten tulip bulbs in its place.  Two years later, this beautiful flower appeared.  I was in awe of how God had placed that one tulip in our front yard on this particular day, when I just-so-happened to be filled with fear and anxiety.

I ran errands that morning until time for my OB appointment at 10:30, expecting that this would be the appointment in which I went on bed rest.  After having had strong contractions all day on Sunday, I just imagined that at 31 weeks all of my "running" would be over.  Much to my surprise, my OB was not surprised.  He smiled gently and explained that he thought all I was experiencing was normal with my history of pre-term labor with Samuel. 

While waiting to leave my appointment, I received a text from Brian who had left work due to an injury he had received Monday while playing basketball.  He explained that he was at the chiropractor who had discovered his injury was in fact a bulging disc.  Brian was instructed to do no heavy lifting or strenuous activity for 3 weeks. 

I went about my day so thankful for God's provision of keeping me off of bed rest especially when my husband was going to be unable to lift the boys.  Stockpiling diapers, getting groceries, and running errands were my mission for the day.  I also had made plans with my sister to pick her and sweet Natalie up around 1:30 that afternoon before picking the boys up from Mother's Day Out.  Natalie was to turn 5 in just two days, so we had decided to take the cousins to McDonalds for ice cream and play.  We had originally thought we'd go to Chick Fil A in Rivergate, but I thought it'd be less crowded at White House McDonalds (and get 50 cent cones).  So, we headed to pick up the boys.

We arrived at McDonalds with three very excited kids.  Daniel and Natalie went running into the Playplace while Samuel, his normal, timid self, took his time climbing up the one step and onto the platform.  Mimi had gone to order our ice cream while Aunt Ca and I watched the kids.  I had just told Jessica that Samuel would simply climb the stairs and platform but never enter inside the Playplace.  True to his usual fashion, he crawled up the stairs but stopped just before going into the tunnel.  We'd been there a whole 7 minutes when Samuel fell face first onto the platform while Mimi still waited in line.  He screamed for Mommy when Ca got to him first, and she passed him to me.

We were certain he'd just gotten scared and that his face was hurting him.  It was just a simple fall, from the step to the platform.  He had twisted towards his left side downward onto the platform, but it wasn't anything major.  However, Samuel continued crying...  When Mimi returned with our dipped cones, Samuel would not take his - an indication that his fall was more than a scare for him.  I would go to sit down, and he would sternly say, "Stand up!" over and over again.  When his crying lasted for over 20 minutes and people began to stare, I asked Mom if she thought this was normal.  She agreed that it wasn't, so Samuel and I climbed into the van, leaving our family behind.  Just before heading out the door, I looked at him and said, "Samuel, tell Mommy what is hurting.  Can you tell me what's wrong?"  He looked up with his tear-filled eyes and quietly stated, "My leg, my leg."

Samuel was very quiet as I carried him into the pediatrician's office which was just two lights away from McDonalds.  I found it strange that while being examined, he kept his leg bent and his toes raised, resting his whole left leg on my stomach.  We waited as they decided to send us straight to imaging down the street.  Being 31 weeks pregnant, I knew I'd need to return to McDonalds to get my sister to hold Samuel for his x-rays.  The x-rays were difficult; I waited in the hallway as I listened to Samuel yell for Mommy and allowed Jessica to hold him.  Jessica knew he was in pain, and it hurt her to have to hold his leg with the grimacing expressions on his face.  I think she realized the outcome before I did.

We returned to the pediatrician's office only to be taken straight back to Room 1.  The nurse entered with a significant dose of ibuprofen for Samuel, and I believe this was my first indication that something might actually be wrong.  Moments later, our pediatrician walked in and said, "Well, he has broken his leg...  (my heart is sinking at this point) in two places."  I began to tear up because the emotions of the day were finally catching up with my hormonal, pregnant self.  She informed us that we'd be looking at 8 weeks of a cast...  and here I was, almost 32 weeks pregnant.  We really didn't have 8 weeks!

Jessica, Samuel, and I were sent to Vanderbilt Children's ER because all of the orthopaedics were closing for the day.  Thankfully, Brian was able (despite his bulging disc) to drive to McDonalds, leave his car for my mom, Daniel, and Natalie, and my father was able to take him back home where he remained on the couch for the next day. 

The wait seemed like ages in the ER, but we were home by 11:30 that night, equipped with Loritab for Samuel's pain and a cast from his thigh to his toes.  He'd had to endure the cast saw, and the doctors saw fit to saw a slit from the top of the cast to the bottom to allow for swelling.  The next few days were hard, adjusting to life with Daddy down and out, Mommy 32 weeks pregnant, and Samuel unable to walk.  He learned very quickly to scoot and crawl despite his 5-10 lb addition. 

Frustrated at the possibility of NOT playing at the train table

This is really cramping my style.

Learning to sit and sing with his cast.

2 days after the injury, a smiling Samuel

climbs his way up onto the chair.

Yesterday, Jessica and I took Samuel to the Pediatric Orthopaedics at Vanderbilt where he received another round of miserable x-rays and a new "outer" coating for his cast.  He's sporting a heavier, blue-colored cast which he will wear for only 3 weeks.  A splint may be necessary when we return to take the cast off to help him transition back to walking. 

This isn't too bad!

My mind, throughout all 8 days of this, has constantly gone back to the clock that I woke to a little over a week ago.  8:28.  As clear as the sky (and Samuel's cast) is blue, my God is still God, and He will and has already worked all things together for good.

In Fearful Awe

I've been blessed to have taken our two boys to the Emergency Room on Monday.  Although that sounds much like an oxymoron, today, I feel it is tremendously true.  As I watch them run around in their pajamas on this cold December Friday, I realize how blessed I am to have them after the scare we had on Monday.

My husband called at 10:46 a.m., asking me to look in the office for his yellow notebook as he had written some important information in it and had left it at home.  Four minutes later, I walked into the living room to find the boys in the floor with one of our red cups.  I immediately grabbed the cup out of Daniel's hands and smacked his leg, as he is quite aware that he is not allowed to drink from a cup in the living room.  However, to my surprise and fear, I realized that the liquid in the cup was not a drink my kids should have been drinking.

A few days earlier, I had been diagnosed with bronchitis, and on top of an antibiotic, I was prescribed a cough syrup with hydrocodone in it.  I was to take the syrup, a 5 mL dosage, nightly before bed to help ease the cough I'd been "plagued" with.  This, of course, did not need to be in the reach of my children, and yet this is what I found in the red cup I'd pulled from Daniel's grip.

My heart sank.  I knew that a small amount could be very dangerous in my two toddlers' bodies, so I emptied the remaining syrup from the cup back into the prescribed bottle and crying, called the pharmacist.  While she was very calm, the immensity of the whole situation was alarming to me, and I could not stop crying.  She felt that the boys had drank approximately 40 mL of the syrup and that I should very closely observe them and not allow them to sleep more than thirty minutes at a time.  I was also told to call the pediatrician to make them aware of the situation.

When I called the pediatrician, the situation became much scarier.  I was to call Poison Control immediately...

I imagine that at this point I should explain how I believe Daniel and Samuel got the medicine to begin with.  It was on top of the kitchen counter in the pharmacy bottle.  Daniel used his Sit-N-Spin to climb the counter, grab the medicine bottle, somehow get the childproof top opened, pick a cup out of the sink, pour the cough syrup into the cup, then climb back down and share with his brother.  I am still in awe of my two and a half year old's actions that day.

Upon speaking with Poison Control, I became quite hysterical.  I was to get in the car, drive to the ER, and make certain that neither child fell asleep.  IF one were to fall asleep, I needed to call 9-1-1, as the hydrocodone could keep the boys from breathing.  Somewhere in these quick minutes, I had called my sister, who had sped over to help.  She was able to keep Samuel awake in the van while on our way to the ER.  Thankfully, Daniel never even acted phased.  He was his typical energetic, humorous self.  He was actually explaining to Aunt Ca what he had done.  "I got Mommy's med-cine.  It was yucky.  Yes, I share with Samuel.  He can't not like it.  He spit it out.  It nasty." 

I'll spare the details of our 5 hour observation in the Emergency Room, as it was just that.  Five hours with two toddlers in an emergency room with no television and in their pajamas.  The best parts of that adventure were the graham cracker snacks with peanut butter, Daniel's pee-ing in the urine bag :), and receiving red popsicles once we learned that the tests were negative and the boys were okay.

The ER physician believes that either Daniel's body handled the medication well or that the bottle of medicine didn't have the correct amount of liquid in it when it was prescribed to me.  Either way, he was laughing at how adventurous my life must be on a daily basis.  I was finally able to laugh too...

It was on the following day that I broke.  I dropped the boys off at Mother's Day Out, and Daniel cried for me not to leave.  Oh, how my heart was filled with such relief that he and Samuel were okay!  No one knew how scared I'd been the day before, how guilty I felt, and how close I'd come to having some very sick children.  The tears continued to fall the entire five hours the boys were at school.  I couldn't believe how God had taken this terrible situation and caused my heart to ache for my children.  I really wanted to see them.  I didn't like them being away from me.  I had learned to appreciate their sweet faces and actions and how to NOT take them forgranted in one short day.  Holding them that afternoon after school was one of the best feelings I've ever had.  I'm in awe of how good God is.

Surgery Day!

After his birth, I noticed a small "skin tag" on Samuel's neck. At the time, the doctors believed we needed to wait until he was at least 6 months old to operate and remove it. At his 6 month well visit with the pediatrician, we set up an appointment to see a plastic surgeon at Vanderbilt. Ultrasounds showed very little, and the surgeon said that removing it would be the only way for him to know what exactly the mass was.

We have been waiting since February for our insurance to approve the surgery. After all the waiting, the process has actually happened very quickly! The surgery was approved and scheduled all in the same week! Praise God! Right on time, the spot had some noticeable changes. It had hardened and gotten a little bit larger. It never seemed to bother Samuel, though.  Others noticed, however, and it bothered us at times to hear the comments people would make regarding something our child was born with, but God knew what He has in store for Samuel Levi. 

Yesterday (April 13, 2011) was surgery day. He did amazing! Surgery was scheduled at noon, so he hadn't eaten for 12 hours. He was awaken at 11:30 p.m. on Tuesday night to eat a jar of banana/orange medley (in the dark).  He had his last bottle of milk at 3:30 a.m. on Wednesday morning. The waiting room was hard, as they ran a bit behind schedule, and he was getting very irritated.  Once we were called back, we dressed him in the cutest little pajamas, and answered a million of the same questions.  We continued to wait for the OR to open for him.  We said our goodbyes when the surgeon arrived.  From what we understand, they put a breathing tube in, put him to sleep, ran an i.v. through his left foot, and removed the mass. Recovery was difficult. He was not soothed easily. In fact, upon waking, he needed two doses of pain medicine, but was quickly relieved by a nap in his Daddy's arms. Once he ate (4 oz of Pedialyte), we were allowed to head home. We learned that the spot WAS deeper than originally suspected and was connected to the muscle.

For now,  he is on antibiotics, pain meds, and TLC for the next 5 days. He returns for a follow-up visit with the pediatric plastic surgeon on Monday, April 18th. Samuel is resting very well, and he has even crawled around and played with his "Get Well Soon" balloon from his aunt, Jessica.  Thankfully, Jessica and Mom were able to stay with Daniel while we were at the Children's Hospital.  Jessica even got us supper!  We are so blessed with such wonderful family and friends.  Thank you for your continued prayers. We didn't publicize this because we know that there are children in much more serious need of prayer, but we appreciate so much your concern for our sweet boy!

Here are some pictures from our day:

The night before surgery...

Watching Elmo with his big brother.

Here is the "mass" on his neck,

in case you've never seen it.

In the holding room, prior to surgery.

Aren't those pajamas precious?!

He was so hungry and sleepy.

Look how small he looked in that hospital bed!

Getting some play time in before surgery.

Last night, 6-7 hours after surgery.

His eyes are red as a side effect from anesthesia.

His incision is glued, stitched, and covered.

HOWEVER, he was ready for applesauce!

We Made It Home

My First Time in the Car Seat, Leaving the Hospital


My Daddy Loves Me SO Much


One of Daddy's First Times to Change Me


Taking a Nap with Mommy on the Couch


Enjoying My Bassinet

Preparing To Go Home

I'm Ready to Leave


My Going-Home Outfit


My Mimi Always Wants to Hold Me


I Napped with Mom the Day We Left


My Long Toes and Precious Foot

Our Gift From God

Sleeping at the Hospital


My Puppy Dog Mittens from My Great-Aunt, Christy


Sleeping with My Arms Up


Thank You, Christy, for My Warm Mittens

Family Photos

My Mom Was in Awe of Me


Sleeping Soundly


My Daddy is Smitten with Me


Uncle Andrew and Aunt Jessica Couldn't Get Enough of Me


Sleep is So Nice

Thank You All...

He isn't quite a day old just yet, but I cannot tell you how immensely excited we are over this little boy. He spent his first night in the nursery, and (after 23 hours of labor and no sleep) Brian and I were able to sleep soundly. Of course, Daniel came in a few times to see his momma, but he was just so sweet each time. He hasn't cried very much, but I imagine he'll find his voice soon and make sure he's heard. I am sore and exhausted, but I haven't found much time to sleep, looking forward to seeing Daniel's sweet face.

I just wanted to take a moment to thank everyone who has called, texted, emailed, and stopped by the hospital. Your love and support of our family has been incredibly overwhelming and humbling, and we deeply appreciate all you have done for us. Please continue to keep us in your prayers as we continue on this fantastic journey. We love you all, and cannot wait for you to meet our blessing, Daniel.

Love and Blessings,
Jenna, Brian, and Daniel

Daniel's Visitors

Say Hello to Daniel Benjamin!


Momma Holding Daniel for the First Time...


Daniel Drew in a Crowd...


Daniel with His Great-Grandfather, Pop


Daniel with His Grandpa

Daniel's First Day

Aunt Jessica waited patiently to hold Daniel...


Mimi was all smiles...


Daddy and Daniel


Daniel and His Family...


Dr. Nason, Daniel, and Daddy


Daniel getting checked out by the nurses after delivery...