My Little Sunshine

Throughout my life, I have had several "sunshines."  

As a teenager and through part of college, there was Brianna.  

Brianna battles Cerebral Palsy.  I had the privilege of working with her in several capacities at summer camp.  Brianna LOVED attending Mid-South Youth Camp in Henderson, TN.  However, her wheelchair and physical limitations made an outdoor camp a bit of a challenge for her.  She never let it stop her.  The weeks she attended each summer, she was accompanied by either her aunt or myself as her care-taker.  We helped her bathe, get dressed, fix her hair, eat, go to the bathroom, complete her physical therapy, take meds...you name it.  We also helped her take in the camp activities.  We took her swimming, we took her to the lake, we took her to the scavenger hunt, carried her flights of stairs when ramps were not available.  We stayed by her side day and night.  To say I was exhausted at the end of one of these weeks would be an understatement.     

To say I wasn't uplifted by the end of one of these weeks would be a lie.  I learned so many valuable lessons from this sweet girl!  I can remember holding her hands as her parents or her physical therapist would complete her leg exercises.  Her joints were often so stiff that this caused her unbearable amounts of pain.  Through each session.  Brianna would smile, because she was just happy to be at camp with the rest of the kids!  She might have tears running down her face because of the pain...but she was smiling all the while!   My favorite place to take her was to the pavilion where we had our devotionals and periods of singing each day.  I can remember countless times where I sat there, tears streaming down my face, smiling - unable to sing - because of the joy and love and passion Brianna had for our Lord.  Due to the severity of her Cerebral Palsy, she was unable to clearly say many words.  Brianna never let this stop her.  She sang every song at the top of her lungs with so much passion and excitement!  

Brianna was a little bit of sunshine in my life!

In my second year of teaching fifth grade, I found Taylor(and several others).

This particular year, I had a packed classroom.  Nine or ten of my students that year had special needs.  Some of these needs ranged from severe dyslexia to manic-bipolar to severe anxiety to rage issues to epilepsy and many others.  Taylor was one of my students from August to Christmas that year.  Taylor, like Brianna, lives with Cerebral Palsy.  Through all of the frustrations of the hectic and challenging classroom that year, I could always count on a smile from Taylor.  You couldn't help but love him!  Yes, teaching with a little boy like Taylor in the room could be very difficult at times.  He needed constant attention.  He needed someone to help him eat, use the restroom, write his name, and read.  He needed someone to help him up and down the hall and around the room, and he needed someone to help him get to the bus on time.  Add in the other issues faced by my students that year, and it is amazing my hair isn't gray yet...

The awesome thing about that year, with all of its challenges, is that I can look back and smile.  I had little bits of sunshine in each and every day.  Some days, it was an enthusiastic Taylor flagging me down just to smile and tell me he good morning.  Some days the sunshine was from a child, who had such severe rage issues his couldn't get his words straight, calm down long enough to tell me he loved me.  Even now when I run into some of those former students or their parents, I am reminded of how great a child's love can be!  As a teacher, my job was to teach these students where they were.  I don't know if I succeeded in helping each of those students with their challenges or not.  I pray that I did.  However, I do know that, because of the little sunshines I had in my room that year, I can look back and smile.  (Sometimes I have to laugh at some memories to keep from crying, because I really am not sure how I survived at times!)

Taylor was a little bit of sunshine in my life!

Now I have my sweet, energetic, clown.  

Life with a CF child is not always easy.  I would never wish for anyone to battle Cystic Fibrosis, and I pray for a cure.  Through the hours of therapy and the hundreds of pills, there are times I grow weary as a momma.  There are times I can't help but ask why.

  

Then she looks at me with her perfect toothy grin, and it all fades away.  All of the shadows of doubt in my mind grow a little lighter because of the perfect ray of sunshine God has placed in my life.  

Her body is not perfect.  Considerable amounts of time and money go into her daily care, and those amounts will only increase as she gets older.  Through it all, I have learned so much!  I have learned the amazing power of prayer.  I have learned how important your family support system is.  I have learned that, though sometimes you have to look a little closer, there are always silver linings.  There is aways a little bit of sunshine...even on the darkest days.

On a daily basis, she is my little sunshine.  

My blood is curdling tonight.  I came across a few articles telling of "parents" who have sued medical companies and doctors on the grounds of "wrongful birth."  These beautiful, innocent children were born with different challenges:  some with downs syndrome, some with physical deformities, some with a multitude of challenges; and the parents are seeking "justice."  In many of the cases I read tonight, these parents had gone through the genetic testing that is offered during pregnancy to check for some of the more common possible problems.  These parents are suing, and winning, cases on the grounds of "wrongful birth."  They say their child was wrongfully born because the doctors and the tests were wrong, and their child was born with the problems the tests said they had a 50-50 percent chance of not having.  Some of the parents say that, had they had the correct information, they would have terminated the pregnancy.  Some of the parents say they love their child deeply, but the care is such a drain emotionally and financially that they deserve to be paid for the poor information that was given to them before and at the time of their child's birth.  What do these sweet children think of all of this?  Do they feel the love their parents say that have for them?  Do they feel like their lives are valued? 

My heart is heavy tonight.  My mind races to the "what-ifs" of the sweet sunshines that have crossed my path.  What if the parents of those children had known about the difficulties they would face and had aborted them?  What if they had to grow up in houses where their births were referred to as "wrongful"?  What if they never felt loved?  Would they be able to spread love and joy to others with whom they cross? 

My prayer tonight is that we once again begin to see the value of human life as God intended for us to see it.  My prayer tonight is that each one of us holds our children a little closer each day.  My prayer tonight is that children whose parents do not realize the blessings children bring can find love from a teacher or a grandparent or a mentor.  

My prayer is that we all search for the sunshine God has provided in the unlikely places and thank Him for it.  

Thank You!

I realized this morning that it has been 3 weeks since my last post.  Needless to say, we have been a bit on the crazy/hectic/busy side of things around here.  

I wanted to take a moment to just say "Thank You!"  

Thank you to all the people that have prayed and continue praying for Harper as she battles Cystic Fibrosis.

Thank you to everyone who donated money to the Cystic Fibrosis Foundation through our Great Strides event this past Saturday. (If you haven't donated yet and would like to, click the link in the right hand column…it's not too late!)

Thank you to my work family at CA for your donations to our cause. It is a huge blessing to us to be a part of this family!

Thank you to our dear friends and family who were came out to support our team at the 5k run and walk this weekend.

Thank you to our local Walmart employees for taking part, even though you didn't know us beforehand.  We are honored to know you know!

Thank you to our sweet church family.  There are way too many things to list here for which we are thankful to you!

Thank you to the Nashville chapter of CFF and the coordinators of Superhero Strides 5k run and the Great Strides walk.  The event was a huge success, and we are already looking forward to next year!

Our sweet Harper's face was smiling bright on a sign right beside the 5k finish line. 

 The day offered hope for us.  

Hope as we saw adults who have battled CF their entire lives with their children and families. 

Hope as we saw how passionately others are fighting and working to make CF stand for Cure Found.

Hope as we met other parents with CF children who offered a smile, a prayer, a kind word, and a phone number; because we are all in this together!

We are so blessed to be surrounded by a support group as strong as ours!  

Spiritual Beauty

A few years ago, some ladies and I put together a retreat for a group of High School girls.  The topic was beauty.  Over the course of the weekend, we had breakout sessions on how to be beautiful as daughters of the King.  My topic for breakout sessions was "Spiritual Beauty," and I think I was more blessed by my study than the girls to whom I spoke during the sessions. 

In my personal Bible study and preparation for the weekend, I came across Psalm 139.  Until this time in my life, this was one of those psalms that I had read...but I had not really focused on.  Yes, there were key verses (vs.13-14, in particular) that I had always liked and remembered, but I had not really meditated on the psalm as a whole. Until now.  As I sat and spoke with small groups of some of the most beautiful (inside and out) girls you will ever meet, tears came to my eyes.  There we were sitting out on the deck of a beautiful lodge surrounded by God's creation talking about beauty.  I tried to give examples of women in my life who were and are spiritually beautiful.  

* Women like Mrs. Lisa Key: a wife, mother, teacher, daughter of our King.  I never had the opportunity to have Mrs. Key as a high school teacher due to transferring schools, but I was blessed to have her as a teacher at Horizons during the summers.  She was beautiful.  The world lost a beautiful person to cancer when she died, but I know she is in a huge mansion in Heaven with our Lord.  (I can make these same comments a few years later about Mrs. Hope Shull).

* Women like my sister, Rachel.  The first time my sister went to Haiti with my dad and me, she saw a need.  She postponed her senior year of college and moved to Haiti for a year to help our missionary there.  She has always been one of my heroes.  (I don't know if I have ever told her that.)

* Women like my mother who raised 5 children.  I have never met a more selfless, patient, kind and caring lady.  She has one of the most tender hearts and the love she has for our Lord is evident in every aspect of her life.  

(Since this time, I have added so many people to this list of amazing Christian examples. God has blessed my life in so many ways by the people He put in it!)

I had the girls give their examples of what Spiritual Beauty is, and we talked about what we could do in our lives to have this kind of spiritual beauty.  As we finished our discussion we read Psalm 139.  

There are many people who might think I'm crazy for using this psalm in a discussion about spiritual beauty, but I would like to ask you to read and meditate on this passage for a few minutes.  Pray this as a prayer.  Does it scare you that He knows your thoughts and words before you do (vs. 2-6)? Does it scare you that you can never escape His omnipresence (vs. 7-12)?  Does it bring alarm that He can search the innermost feelings and thoughts of your heart?  Or, does it bring peace.  As Christians, we should strive for such a strong spiritual beauty.  We should strive for such a pure heart that allows us to pray this prayer and genuinely mean it.  We should strive for a heart that can pray this prayer with an earnest longing for God to lead us closer to Him.

I believe when I can do that, I will be one step closer to being spiritually beautiful!

Psalm 139

English Standard Version (ESV)

Search Me, O God, and Know My Heart

To the choirmaster. A Psalm of David.

139 O Lord, you have searched me and known me!
² You know when I sit down and when I rise up;
    you discern my thoughts from afar.
³ You search out my path and my lying down
    and are acquainted with all my ways.
⁴ Even before a word is on my tongue,
    behold, O Lord, you know it altogether.
⁵ You hem me in, behind and before,
    and lay your hand upon me.
⁶ Such knowledge is too wonderful for me;
    it is high; I cannot attain it.

⁷ Where shall I go from your Spirit?
    Or where shall I flee from your presence?
⁸ If I ascend to heaven, you are there!
    If I make my bed in Sheol, you are there!
⁹ If I take the wings of the morning
    and dwell in the uttermost parts of the sea,
¹⁰ even there your hand shall lead me,
    and your right hand shall hold me.
¹¹ If I say, “Surely the darkness shall cover me,
    and the light about me be night,”
¹² even the darkness is not dark to you;
    the night is bright as the day,
    for darkness is as light with you.

¹³ For you formed my inward parts;
    you knitted me together in my mother's womb.
¹⁴ I praise you, for I am fearfully and wonderfully made.^[a]
Wonderful are your works;
    my soul knows it very well.
¹⁵ My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
¹⁶ Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

¹⁷ How precious to me are your thoughts, O God!
    How vast is the sum of them!
¹⁸ If I would count them, they are more than the sand.
    I awake, and I am still with you.

¹⁹ Oh that you would slay the wicked, O God!
    O men of blood, depart from me!
²⁰ They speak against you with malicious intent;
    your enemies take your name in vain.^[b]
21 Do I not hate those who hate you, O Lord?
    And do I not loathe those who rise up against you?
²² I hate them with complete hatred;
    I count them my enemies.

²³ Search me, O God, and know my heart!
    Try me and know my thoughts!^[c]
24 And see if there be any grievous way in me,
    and lead me in the way everlasting!^[d]

"I'm sorry...I have to go to church tomorrow..."

Have you ever been invited to an event and found yourself declining the invitation in this way?  

Unfortunately, if we are honest, many of us would say we have.  Maybe, we used this "excuse" when we were in junior  high or high school and we were still in that, "My Parents Make Me Go to Church" phase.  Maybe, it was when we were in college and knew we needed to go attend worship with our brethren, but not yet were we fully appreciative of this time or fully convinced this time was very much needed in our lives.  

How do you feel about that statement now?

Growing up, I heard preachers and Bible class teachers talk about how I needed to change my attitude from "I have to..." to "I get to..." or, even better, "I am blessed to..."  At some point in my adolescence, I grasped the more positive attitude, and I really felt blessed to be able to worship with my family.  Eventually, attending worship became more of a habit.  I remember a time not long after graduating college that my spiritual life really suffered because of this.  I was living on my own, teaching school, and worshiping with an incredible church family.  I was teaching the 4-5 year old Sunday school class and a Wednesday night huddle group with some teenage girls.  Sounds great right?  The problem was with all that was going on, I felt alone and lost.  My attitude wasn't what it should have been.  I attended worship because it was expected of me.  Don't me wrong.  I LOVED teaching the Bible classes.  I have to admit, however, that there were some Sunday mornings where I would have been quite tempted to sleep in had I not had the responsibility of teaching.  Thank God for the opportunity I had to teach precious 4-5 year olds, because it kept me going!  One Sunday morning, I was especially in a low spot, I planned on going to worship, teaching, and ducking out before I could really be noticed.  A sweet friend of mine caught me and really encouraged me to attend our weekly lunch and small group Bible study.  Reluctantly, I went with her.  By the end of the small group Bible study, I was sitting there with tears streaming down my face!  What we discussed and studied from God's word was EXACTLY what I needed that day!  I had not been speaking the words "I have to go...," but I had been living those words.  I had become very lukewarm in my walk with God.  Shame on me!  

Have you ever felt this way?  I pray that you haven't.  The reality, though, is that many of you probably have.  If you are there now, I urge you to reach out to someone with whom you can be open and honest.  Someone with whom you can share your burdens(Galatians 6:2) and who will pray for you.  Pray that God will prick your heart and help you to see the importance and necessity of worshipping Him.  Pray that God will guide you back to Him before it is too late. 

This past Sunday morning, I was blessed to be able to attend worship with my family for the first time as a family of three.  I was blessed to be able to attend worship with my husband for only the second time in 7 months!  This had been a true case of forgetting how blessed you are until it is gone.  For months I have kissed my husband goodbye as he left for worship each week.  For months, we have been praying that Flu season would quickly make its exit so that Harper would be able to attend worship with us.  When we received the "green light" from our daughter's doctor on the Thursday before, I was giddy with excitement!  This whole week since Easter Sunday, my attitude has been completely different.  I have been happier; I have been more energetic; I have been excited.  Several times today I have found myself talking to Harper about what we needed to do before tomorrow (bath, early bedtime, etc.) because we get to go to church again tomorrow! What a BLESSING!!

There is a reason God commanded us to assemble together on the first day of every week.  He, in His infinite wisdom, knew we would need a reminder of His love and sacrifice at the beginning of every week.  He knew we needed to start every week with Him at the forefront.  He knew we would need the encouragement and time of fellowship with our brothers and sisters.  We are commanded to worship Him, yes.  This is not something for which we should be sorry!  On the contrary, because we are Christians, we are BLESSED with the opportunity to worship Him!  What an incredible privilege!  

As we face the beginning of another week, it is my prayer that we approach worship with an attitude of thanksgiving and humility.  It is my prayer that we put away the feeling of obligation and the apathetic motions.  It is my prayer that we stop apologizing for following our Father's command to assemble with other Christians to praise His name.  The gathering together of the saints is a weekly celebration of the Lord's sacrifice for us.  It is a weekly reminder of His unending love for us.  It is my prayer that we regularly thank God for blessing us with the opportunities He places in our lives:  opportunities to study His word, opportunities to fellowship with brethren, opportunities to grow, opportunities to worship Him. 

My Sundays and Wednesday evenings are booked from here on out.  I will not apologize or make excuses.  I will praise the Lord...I AM BLESSED!

Just Breathe...

Have you ever stopped to think about your breathing?

For most of us, this is something we never have to contemplate.  We never have to worry whether or not the next breath we take is going to be effective enough to provide the oxygen that our bodies need.  This is such a blessing!

I've never really experienced the flu.  Growing up, if I came down with a sickness, it was usually either strep throat or a really bad sinus infection.  Several of these sinus infections have moved into my chest causing my breathing to be quite uncomfortable.  As much as I think of myself as being strong...when I get a sinus infection like that, I'm a whimp!  I gripe and complain and feel like I'm never going to be able to breathe again!  Just when I think the worst, the medicine kicks in.  I wake up one morning, and the weight is off of my chest.  I breathe in that crisp morning air, and the life is good again! 

I'm blessed.  I have healthy lungs, and I don't have to worry about daily medicines or therapy to help me clear my lungs.  

For many people, however, this is not the case.  Too many people go through their lives struggling for their next breath.  Too many people spend hours each day being diligent to  exercise and go through respiratory therapy in order to be healthy and avoid hospitalization.  Too many people struggle with Cystic Fibrosis.  

Because of this reality, I'm about to do something that I've spent most of my life DREADING AND AVOIDING!  I'm about to ask you for your financial support.  I've never been bothered by giving money to different causes, but the thought of asking for money has always terrified me!  When I was younger, as much as I enjoyed the fun assemblies with all the prizes for things like the Magazine Drive or Jump Rope for Heart or any other number of fundraisers, in reality the actual asking for support part really terrified me!  Maybe I just wasn't very good at "selling the product."  Maybe I just didn't WANT to ask.  Maybe I just didn't care enough.  

I'm asking now.  I'm asking for Harper.  I'm asking for all of the people who woke up this morning and faced Respiratory Therapy before drinking their morning coffee or brushing their teeth and take a handful of pills before every meal.  I'm asking for the people who are about to turn 30 knowing that the average life expectancy of a person with Cystic Fibrosis is 37 years old.  I'm asking for their families and children.  I'm asking for the researchers and scientists who work tirelessly day and night trying to find a cure.  I'm asking for the doctors and nurses who love their patients and want a cure found.  I'm asking for the moms and dads who are sitting in a small room right now waiting to hear whether or not their child might have CF and wondering what their future will look like as a family.  

I'm asking for me because I've finally found something that I'm grabs my passion and doesn't let go!  I'm asking because I have seen the positive things the Cystic Fibrosis Foundation has already done.  I'm asking because I want to see a cure found for Cystic Fibrosis in Harper's lifetime!  

There is a Great Strides walk being held in Murfreesboro, TN, on May 18th.  I will be there with my family and friends as part of "Harper's Hope."  I will be walking for Harper. I am walking to raise money so that a cure can be found.  

I'm asking you to help!  To the right of my blog page, you will see a button with the Great Strides CFF logo on it.  Please click on this button and give your support!  If you are in the Middle TN area and would like to be a part of our team and walk with us, scroll to the bottom of the page and join our team!  If you are unable to walk but would like to donate money, scroll to the bottom of the page (after looking at the adorable picture of my sweet Harper!) and click donate now!  

Any amount is greatly appreciated!  My goal right now is set for $600, but I would really LOVE to surpass that and raise $1000!  That is my unofficial goal! 
UPDATE:  We have surpassed $600!  Thank you for those that have already donated!  Let's make it to $1000!  It is now my official goal!!
 Please help me reach this goal before May!  

Thank you in advance...and I'll get back to normal blogposts from here on out!  ;)

Time's a Flyin! Part 3...So what now?

In my last post, I shared with you several of my emotions surrounding Harper's stay in the NICU and the possibility of her diagnosis.  What I didn't share were the "Silver Linings" Barry and I found.  We didn't always see it, but God was and still is blessing us daily.  

Here are three of these blessings:

1.  We live within an hour of one of the best CF clinics in the nation.  (I don't know if this is actually a proven fact, but I would put our medical support team up against any in the country!)  God was taking care of us!

2.  We have an incredible set of doctors, nurses, respiratory therapists, and nutritionists helping us take care of our baby girl!  Not only do they genuinely care about Harper's health, they care about how Barry and I are dealing with all of it!  As our doctor told us the news, he gave us some explanations and information.  He then took time to sit with us and answer questions.  As the daughter of a doctor, I understand how busy doctors are when they are in the office.  There are constantly people waiting to be seen, charts waiting to be signed, phone calls waiting to be returned, and prescriptions waiting to be sent.  On that morning, you would have thought we were the only people in the building and that there were no other issues waiting to have the doctor's attention.  He sat with us as long as we needed him.  He answered every question we had.  For the most part, I sat there silently holding Harper with tears slowly rolling down my face.  When he saw this, he addressed me and took time to comfort me and let me know it was okay to be upset.  He let me know he and the rest of the team are a phone call or email away any time of the day whenever we had questions.  He didn't leave our room until he knew that we would be okay.  In so many ways, he reminds me of the kind of doctor my dad is to his patients: one that cares about every aspect of his patients' well-being.  God was taking care of us!

3. We didn't see the blessing of having a week to let the possibility of CF sink in to our brains before actually hearing the diagnosis.  During the week of waiting, the uncertainty was exhausting and scary.  However, looking back over the situation, having that week was a blessing.  You see, when we met with our wonderful doctor for the first time, he gave us a great deal of information about Cystic Fibrosis.  He taught us about what the two defective genes cause the body to do.  He also talked to us about several of his patients that are thriving.  He gave us positive statistics to assure us this didn't have to be a horrible, awful thing.  (Don't get me wrong...CF is never good...but it isn't as bad as it used to be with medical advancements!)  Having that week gave us time to soak in all of the information.  When we went in a week later, hearing the diagnosis was hard, but it wasn't half as hard as it would have been if we had heard it the first week we went in for the sweat test!  God was taking care of us!

So what now?  

Because we had that week to chew on the possibility, we were able to take the news and process it a little better with the doctor that morning.  We were able to say, "This is not what we wanted, but it is what it is.  So what now?" To close out the story of our journey over the last 6 months, I thought I'd share a bit of our routine along with some of the ways Harper's care has progressed.  

At 3 weeks old, Harper began an enzyme treatment.  Because the Cystic affects her pancreas, Harper's body is unable to break down and absorb the nutrients from the food as efficiently as you or I.  To counteract this, we give Harper enzymes.  At 3 weeks old, we started her on 1/2 a capsule of enzymes before every feeding.  As she grows, we increase the amount by 1/2 a capsule to accommodate her growth.  Over the course of 5 months, Harper's enzymes have increased from 1/2 capsule every meal to 3 1/2 capsules!  It is amazing to me how she works the little beads down!  

This picture is a bit dark, but the canister at the top shows the amount of enzymes Harper began taking, 1/2 capsule.  The bottom canister shows the amount she is currently taking, 3 1/2 capsules.  There are about 18-20 little pellets in each capsule.  We thought 10 pellets was a lot for her when she first began this regimen!  Boy were we wrong!  She now takes down around 70 pellets like a champ!  Wow! 

Not long after beginning enzymes, the nutritionist started Harper on a higher calorie diet.  For most of her daily feedings, we now combine pumped milk with high calorie preemie formula and salt to help her gain weight.  CF patients often have to have a great deal more calories per day simply to maintain their weight compared to a normal, healthy person.

A little before Harper turned 3 months old, we started respiratory therapy.  For now, this consists of us breaking the thick, sticky mucous in her lungs free by patting 10 spots around her chest and back for about 30 minutes in the morning and 30 minutes in the evening.  Most days Harper does well with this routine.  It is really all in the timing, though!  If she is already tired or hungry, she gets a bit cranky and it makes for a very long half hour!  Baby Einstein works wonders for us these days!  

These are the percussion instruments.  They are made of a very soft rubber that vibrates Harper's lungs to break the mucous loose.  It feels like a massage on her back!

This week the doctor asked us to start another step to her respiratory therapy.  Before chest percussions, we now giver her Albuterol through a nebulizer.  So far, she is handling this process well.  

We are also a part of a nutritional study.  Before each visit, we journal everything Harper eats for 3 days.  We also log information about her diapers, her cough, her pain, and her mood.  We also carry in a stool sample and a urine sample.  That's probably the best part of this study!  (If you could hear me say that last sentence out loud, you would hear the sarcasm dripping out of every word!)  

Harper has come such a long way since the tiny 5 lb baby we first took to Vanderbilt for a sweat test!  

She has almost tripled her weight, and the doctors are thrilled with her progress!  We are in the groove of her treatments, and the doctors are adding new steps as they see fit.  We also have been able to cut back on our trips to Vanderbilt to every other month!  That's a huge jump for us!  

The biggest blessing of all is that beautiful smiling baby!  

God is taking care of us on a daily basis.  We see His love in different ways every day.  Today, we saw it in the love of our church family and they help they have provided to us.  We are loved, and we are blessed!  

We are still unable to worship as a family of 3 with our Highland family, but we are growing closer each day!  I'm so eagerly awaiting that day!  

Highland people:  wash your hands and get plenty of Vitamin C!  No more getting the Flu and colds and Strep allowed!  Harper needs to make her debut to church soon!  

Time's a Flyin! Part 2

The first couple of days in the hospital were wonderful!  We had a beautiful baby girl, who was healthy and perfect!  She spent a little less than an hour in the NICU after her birth because she appeared to be a little "sluggish."  Because of her prematurity, the doctors wanted to monitor her for a little while to make sure she was okay.  In less than an hour, the wonderful nurses brought Harper back into the room with us and said she was great!  What a blessing!  We spent Friday and Saturday basically staring at our little angel and praising God for how blessed we are!  

September 1, 2012
1 day old

On Sunday, I was discharged from the hospital with the understanding that I could stay in the room as a  hospitality until Harper was discharged.  The doctors wanted to keep her for a couple of extra days until she got the hang of eating.  This is something that is very common in babies born just a few weeks early; they haven't fully developed the sucking reflex needed for eating. 

 That afternoon as we were feeding Harper, everything seemed to "click"!  Harper started eating and did a great job!  She got the hang of eating and WANTED to keep eating!  This was a HUGE deal, and our wonderful nurse and lactation consultant were super excited!  All of the sudden, I noticed what looked like a shadow spreading over Harper's face.  I looked at the window.  There was no change in how the sun was coming through the window.  I looked back at Harper, and the "shadow" had spread, and she had become very still. In her excitement to start eating, Harper had stopped breathing.  The nurse quickly got her moving and breathing again and decided to put her on a monitor to make sure her vitals were okay.  We thought maybe this "dusky spell" was due to her just getting too much milk too quickly resulting in her choking a bit.  So, we spent the rest of the afternoon wrestling with wires and a machine that beeped every time Harper moved the wrong way!  To say it was a bit stressful is an understatement!  That evening, we decided to ask the night staff to watch her during the night because of the beeping.  The sent her to NICU with the understanding that it would just be for the night and that they would run some tests to see what had caused the episode.  

Barry and I decided we would try to get some rest.  All I remember happening next is waking up as the nurse was telling us they had admitted Harper to the NICU.  The dusky spell had really concerned them, and they wanted to keep her there.  I don't remember much of the rest of that conversation.  The next morning, Barry filled me in on the details:  Harper was admitted to the NICU, tests were being run to to rule out causes for the dusky spell, they inserted a feeding tube in Harper's nose, and they inserted an IV port as a precautionary measure in case the she had an infection of some sort.  Barry went to see her that morning while I was getting cleaned up and and tried to prepare me for what I would see when we walked into see her for the first time.  Because she was so tiny, they had to put the IV port into a vein in her head.  That combined with the feeding tube was a bit more than I could handle at first...especially less an 72 hour after giving birth!  (I thought about inserting a picture of her at this point, but it still bothers me to look at the pictures with all the tubes!) I was on a hormone high, and the tears started flowing!  We stayed for her feeding, and then the nurse let us do "Kangaroo Care" with her before we put her back down to rest.  We went back that afternoon for her next feeding, and she had pulled the feeding tube out by herself!  She was eating so well at this point that the nurse decided it would be okay to leave it out.  The IV port also came out once the test results came back ruling out infection.  They decided the dusky spell must have been the result of her immaturity in the eating department.  

Over the course of the next few days, Harper had a few more dusky spells.  I affectionately began calling them "Blueberry Spells" because she looked like the little girl from Willie Wonka...blueberry from her head spreading down.  Our LC loved that name for it! After a few bouts under the lights to pull out the jaundice, Harper seemed to be on the up and up! 

Harper liked the "tanning bed" a little too much!  As soon as they put the
 mask on her she sprawled out and went right to sleep!

We spent a week in the NICU.  There were many ups and downs.  There were times that it seemed like for every one step forward, we were pushed two steps back.  Harper had to show two things before being discharged:  1.  She had to go 5 days without another episode, and 2. She had to stop losing weight and start gaining some back.  At her smallest, she got down to 5 lbs, 2 oz.  She was nothing but skin and bones and cheeks!  

This picture was taken on Sunday, September 9.
Harper had just been brought to our room to stay for the night!
This was the first time she had been out of NICU since the week before!

We were finally discharged on Monday, September 10.  We had an appointment with our pediatrician the next morning, and we were told we should receive the results of the second set of blood work screening they did.  The first set came back elevated, so they redrew and sent it off again.  We were told they were testing for things like Cystic Fibrosis.  We tried not to let this bother us too much, because, after all...there is no CF in my family at all.  We settled in at home with my amazing Mom there to help us for a few days.  

We went to our appointment the next morning, and we made plans to go back on a weekly basis until Harper regained her birth weight.  We also were told we would be called as soon as the screening results came back.  We received the call Friday, September 14, that Harper's 2nd screening was elevated even higher.  They were sending us to Vanderbilt for a sweat test...

When we went for the sweat test, we spent a horrible day in a little box of a room.  Harper went through the sweat test screaming, and we waited.  We waited for the results.  After what seemed like an eternity, the doctor came in to the room and told us the results were inconclusive.  Harper was too small to get enough sweat to test for CF.  The doctor gave us a lot of information about Cystic and started Harper on enzymes with instructions to come back for a weight check up in one week.  Before we left, they drew some blood so they could do genetic testing on Harper.  We were told that the longer we don't hear back about these results, probably the better.  The doc said that if Harper has one of the common strands of CF, it would show up immediately.

So we went home, and we waited.

I wish I could include a scripture at this point that helped me get through this week.  This week of waiting.  This week of "What if?"  This week of "Why?"  

The truth is, though, I was kind of numb.  I didn't want to think about the possibilities.  I didn't want to people to tell me stories of others they knew who went through these same types of tests and came out just fine.  I didn't want to see people.  I didn't want to do anything but cuddle with my 3 week old and my husband.  I didn't want to talk about any of it.  My personality is to be very optimistic in most cases.  There was a part of me that was very optimistic that Harper didn't have CF and that this was all going to blow over as a big scare.  I kept reasoning that her newborn screening came back elevated both times because she was born prematurely and was under different stresses in the NICU.  There are a number of different reasons that could have caused a false elevation in the screening.  Right?  Then reason would set in, and I realized there was a very real possibility Harper could have Cystic Fibrosis.  I so badly wanted to go back the next week and have them tell us the blood work had not come back yet.  I convinced myself that my gut feeling was that Harper didn't have the defective genes.  I was a bit of a mess that week with lots of ups and downs. 

Looking back now, there were a few things that really made an impression on me.  As I've said in a previous post, my brother reminded me of others praying for us when we didn't think we had the strength or the words to pray.  That meant and still means so much to me!  Another huge impact on my life at the time was our pediatrician.  We went back to his office for a weight check on Tuesday before going back to Vanderbilt on Wednesday.  After he finished his once over of Harper, he got to talking to us about the next day's visit to Vandy.  As he got ready to leave, he stopped at the door, looked us in the eye and said, "I'm praying for you!"  What an incredible thing to know that your daughter's doctor is a strong, Godly man who knows the importance of prayer!  I think about that often, even now, because I know he meant it!  Finally, I relied on the faith that the Holy Spirit would intercede for me in my prayers.  There have been countless times when I have broken down in tears, crying so hard I couldn't catch my breath while trying to pray.  The words just wouldn't come.  I was so exhausted - physically, mentally, and spiritually.  I'm thankful now that the uncertainty only lasted a little over a week.  

^{Romans 8: 26-27}

²⁶ In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; ²⁷ and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the^[j]saints according to the will of God.

**Disclaimer:  I promise my next post will be much more upbeat and positive.  I wanted to be very honest about some of the feelings I had during this time.  Thanks for taking time to read!

Time's a Flyin! Part 1

In honor of Harper turning 6 months old this week, I thought I'd spend a few posts sharing a little of what life has been like in the Throneberry household for the last few months.  

On August 29, Barry had a speaking engagement in Cleveland, TN.  So, around noon that day, we headed out thinking it was just another week.  We had made plans to stay with my wonderful in-laws that night to divide our drive back home a little.  At almost 35 weeks along in my pregnancy, I was very thankful for that decision!  The drive to Cleveland was long and quite uncomfortable.  It seemed like Harper was rolling over every hour or so right onto my bladder!  I could not get comfortable in the car at all!  We finally made it to Cleveland; Barry did a wonderful job speaking; we visited with our friends Stephen and Kaycee for a bit; and then we headed back to Middle Tennessee.  That night, I remember waking up more often than I had been...which at that point in my life meant I woke up every hour, rather than every two hours!  I decided I had just reached that point in pregnancy where I was just going to be uncomfortable from then on out.  Up to this point, I had experienced a relatively easy pregnancy.  My morning sickness was fairly mild, especially when I compared it to that of some of my closest friends and family!  I really had nothing about which to complain! 

August 30, 2010, will be a day we will always remember!  We woke up that morning and had a wonderful breakfast with Barry's parents before heading home to a pretty normal Thursday.

This was the last picture taken of us as a couple before becoming parents!
We were standing outside Barry's parents' house about to head home to our doctor's appointment! 

 We were scheduled to have an ultrasound and weekly check-up with our doctor that afternoon, and we were planning on having a quiet, relaxing weekend.  After the ultrasound where we saw our beautiful girl, we sat and joked about what it would be like if the doc said Harper was going to come early.  We had decided it would be the perfect weekend for future birthday parties because of Labor Day.  We laughed about what it would be like to call our families and tell them Harper was coming early...we thought there was NO way it would actually happen!  Let's be honest...I had had a few Braxton Hicks contractions...few and far between...but that was it!!  Or so I thought...

The doctor started asking me questions about contractions and how I was feeling and if I had experienced any unusual pain.  When I told her I hadn't felt any real contractions, she was floored!  Apparently, I was dilated to a 5...half way to where I needed to be to deliver!  Wait, what!??!!  With strict instructions to not make any stops between the doctor's office and the hospital, Barry and I headed to the ER.  My doctor wanted to admit me for observation with the understanding that if the baby did not come that night I would be on bed rest for the remainder of my pregnancy.  

Unsure of how to feel/what to think at this point, we arrived at the hospital and got settled into the room we would be in for the night.  My wonderful husband pulled me into a hug and said a prayer for us before the nurse returned, and we waited...  As we started watching the machines, I realized I had probably been having contractions since the day before!  All those times I thought Harper was punching my bladder...the pain in the middle of the night...all contractions!  They just didn't feel like my abdomen was contracting because I had too much fluid!  As soon as the doctor finished with her scheduled patients that afternoon, she came to the hospital and gave us the news: HARPER WAS GOING TO BE AN AUGUST BABY!  She told us that, based on the amount of fluid I had, the fact that Harper had not dropped at all, some of the monitor readings each time I had a contraction, and the fact that I was already dilated to 5 cm, she was worried that if we went home and waited, something much worse that a possible NICU stay could happen.  

Pitocin was started and phone calls were made.  We were having a baby!  After only about an hour and a half, I had progressed to a 7!  I was feeling pretty good at this point.  I really wanted to go without an epidural.  (My original plan was no epidural unless for some reason labor needed to be induced and pitocin was administered...game changer!)  I was up walking and visiting with my mom and husband; we watched some football; and we laughed...a lot!  Every hour or so, our sweet nurse came in and checked on me and pushed a few buttons to increase the pitocin.  Eventually, the contractions started becoming more uncomfortable.  Not so painful that I couldn't handle it though.  Honestly, the most pain I felt for a long time was the penicillin that was pumped into my arm every 4 hours!  It felt like my arm was on fire!  

There was a slight problem...the pitocin was increased to the highest possible level, contractions were coming so quickly I couldn't catch my breath, it was 3:30 AM, and I was still stuck at a 7!  I realized I would be receiving another round of fire in my arm and was feeling really dejected because of the lack of progress at the point.  I had been awake for almost 20 hours with very little sleep before then, and I was exhausted.  With a tear rolling down my face, I decided it was time for an epidural.  I don't know who was more shocked:  my sweet husband or our wonderful nurse.  Both were very sweet to ask me if I was sure this was what I wanted.  As much as I wanted to continue without, at this point, I knew I needed sleep more that the ability to say that I did it all naturally!  I also knew that with exhaustion setting in, it would be much more difficult to handle the pain of the rapidly coming contractions combined with another round of penicillin in my arm.  Within 30 minutes of receiving the epidural, I was able to fall asleep!  Glorious Sleep!  

Around 6:30 am, the doctor came in to check on my progress.  I think at this point, I may have progressed to an 8, but the doctor was getting worried that Harper wasn't here yet and decided that we would have to have a Ceserean if something didn't happen quickly.  She gave us until 8:00 AM...Harper must have been really listening, because when the doctor came back at 8:00, we were ready to go!  By 8:21 AM, Harper had made her grand entrance!  

Harper Elizabeth
5 lbs 14 oz, 18.5 in 

To say she changed our plans would be an understatement!  We thought we had a few more weeks of planning before we entered the world of parenthood.  We thought we would have time for a mini-vacation as a family of 2 before Harper came.  I even had a haircut and a mani/pedi scheduled for a few days before Harper's due date.  We had plans.  You know what the awesome thing is?  As scary as it was to have Harper come before she was really finished cooking, looking into her eyes 5 weeks early was such a beautiful treat!  We were blessed with 5 extra weeks of loving on our incredible baby girl!  

This sudden change in MY plans got me to thinking...sometimes we are so busy making our own plans of what our lives are going to be like, that we forget to look for the blessings God has planned for us!  I may not always understand the path on which He leads me.  Sometimes I will have to endure pain.  Sometimes I will not get my way.  What a great thing it is know know that if I continue to follow His will for my life, the blessings of His eternal reward for me will outshine anything I could imagine for myself!  

Luke 1:46-55

New American Standard Bible (NASB)

The Magnificat

⁴⁶ And Mary said:

“My soul ^[a]exalts the Lord,
⁴⁷ And my spirit has rejoiced in God my Savior.
⁴⁸ “For He has had regard for the humble state of His ^[b]bondslave;
For behold, from this time on all generations will count me blessed.
⁴⁹ “For the Mighty One has done great things for me;
And holy is His name.
⁵⁰ “And His mercy is ^[c]upon generation after generation
Toward those who fear Him.
⁵¹ “He has done ^[d]mighty deeds with His arm;
He has scattered those who were proud in the ^[e]thoughts of their heart.
⁵² “He has brought down rulers from their thrones,
And has exalted those who were humble.
⁵³ “He has filled the hungry with good things;
And sent away the rich empty-handed.
⁵⁴ “He has given help to Israel His servant,
^[f]In remembrance of His mercy,
⁵⁵ As He spoke to our fathers,
To Abraham and his ^[g]descendants forever.”

I've included the Magnificat from Luke chapter 1.  I'm not trying to compare myself to Mary in any way; rather, I'm borrowing her words of praise to the Lord.  At a time when Mary's life was being turned upside down in many ways, she set the example to praise the Lord for all He does for us! In the future, I pray that I can follow her example more often in my life!