Marks of Grace

Scars.  Most of us have them.  Most of us wish them away.  They are typically a result of pain, perhaps an accident or maybe a planned medical procedure.  Some are minor and appear only for a short time, while others linger for a lifetime, even if they do fade to some extent.  They are typically an unpleasant reminder of a traumatic experience or an unexpected health issue; and they come in all shapes and sizes.  I have learned a lot about scars over the last couple of years as Noelle has added to her “collection.”  They can grow.  I had no idea that the tiniest of needles and pricks could leave scars that would turn into discernible marks as time passed and Noelle increased in size.  They certainly are not what one would call pretty; but God had graciously begun to develop my perspective on scars, long before we ever walked this path with our sweet girl.

DSCN8886

~Thankful for the scar that allowed the enjoyment of the Christmas season from a new position~

Several years ago, the daughter of some dear friends of ours had an accident with a dresser drawer that left a deep cut and required stitches just above her mouth.  She was very young, yet old enough to begin feeling self conscious about such things, especially since it was so prominent on her face through the healing process.  But I will never forget what her daddy told her during a moment in which she was struggling.

“It is a mark of God’s grace.” 

This phrase has stuck with me through the years that followed.  As her daddy gently guided her into a thankful spirit for how God had protected her {since an understanding of the full situation made one realize the consequences could have been much more dire}, he also urged a change in perspective of something that most would consider unsightly.  I cannot say that I had a particular outlook on scars prior to that encounter, but I was challenged in that moment to choose an unusual perspective on the scars which I did have; and when we began to experience scar after scar with Noelle, this lesson was always forefront in my mind.  I am grateful today that I have not regretted a single scar that she carries on her little body.  Yes, they signify pain and suffering to some degree, for scars do not happen without some measure of these types of experiences in our lives.  But truly they are precious to me; and each one signifies a battle, a fight won, another day of life so graciously granted to us.  So thank you, Andrew Scott, for the lived out lesson so many years ago.  It pointed to our Savior who bears the scars of all He has done for us.  It daily reminds me of the Gospel.

Comments { 4 }

Neurosurgery ~ Day #3

DSCN8808

~Sweetest moment of the day…discharged, and walking out with Daddy~

As soon as we have some time this week, we will give a full recap with pictures as promised earlier; but this picture sums up our entire day since Noelle was released from the hospital and allowed to come home.  We could not have imagined or hoped that we would be home within forty-eight hours of her surgery’s completion; but we are so grateful to know that we will wake up on Monday morning and begin our week at home.  To say that Noelle is thrilled to be home would be quite the understatement; and we have thoroughly enjoyed watching her settle in this evening and completely return to her normal self.  So for tonight, we will simply enjoy being in our own beds again and thank God for His unspeakable goodness to us.  “Thank you” just does not seem enough…

Comments { 2 }

Neurosurgery ~ Day #2

DSCN8770

A clean, exhausted girl ready for a little walk to the Christmas tree.

Approximately 30 hours have passed since Noelle came out of surgery, and we are really beginning to gain back our sweet girl’s normal self.  Last night went much better than expected, considering her pain through the evening; and she was able to sleep for approximately eight hours, crying out only when disturbed a couple of times.  Today did not go quite as smoothly as she really woke up, became aware of her surroundings, and adjusted to the pain, nausea, and the flared reflux that became evident throughout most of the day.  Everything was managed well though, and we had several moments in which we were able to distract her and get her to talk or even faintly smile, encouraging our hearts greatly.  After some further apparent discomfort and a vomiting episode this afternoon, she seemed to turn a corner; and we were able to giver her a semblance of a bath, new bed linens, a little walk to the Christmas tree out in the hall, and even a small dinner.  An evening nap gave her some renewed energy for a while, and she was more herself than ever, although a subdued form of it.  Even the neurosurgeon who came to check on her tonight received a smile, which was shocking to all of us since she fusses at most anyone she does not recognize right now.  Her incision is being closely watched for spinal fluid leakage and infection; and although there have been a few times today where it was questioned if leaking was occurring, it has not proved to be the case so far upon closer examination; and we are grateful she seems to be healing well thus far.  Already they have allowed her to disconnect from the monitor {another thing we have never had happen here until discharge, but we will take it!}, and she is attached only to an IV which is simply dripping a very low dose of fluid to keep the line open, just in case it were needed for an emergency.  We were able to hold her again late this afternoon, and we soaked up every moment of the sweet cuddles she gave to us.  At the moment, she is peacefully resting once again; and I am looking forward to joining her in slumber in a few moments.  Overall, it has been a really good day; and we are extremely pleased with her progress.  We realize there will still be some bumps ahead as she adjusts to healing as well as the therapy of learning to use some new muscles; but today, we are simply thankful and excited to be on this side of the surgery with the first day behind us on this road to recovery.  As always, we are grateful for your prayers and love through this process ~ it certainly lightens the load when there are so many brothers and sisters in Christ upholding us in this way.  Thank you.

Comments { 0 }

Neurosurgery ~ Day #1

DSCN8754

~Waiting, staying warm, & being distracted before the surgery~

Surgery is done, Noelle is settled in her room, and we could not be more grateful to God for how He orchestrated events today.  Nothing really went as predicted, but we were mentally prepared for that since it is typical of hospital schedules.  Noelle’s surgery started approximately three hours later than planned, and the little trooper did great even though she had not eaten since eight o’clock last night.  The surroundings made her nervous {as usual, since she typically gets stuck with a needle in one way or another at most doctor appointments}; but about an hour before the surgery they administered a drug that made her relaxed and drowsy, making the rest of the pre-surgery process much easier on both baby and mommy!  The “see you later” was not my favorite part of the day, but even that went more smoothly than we expected, and Noelle handled the transition better than ever before.  Then the waiting began.  Thankfully, we had many friends and family checking on us, praying for us, coming by and visiting us, and encouraging us all throughout the day.  The time passed relatively fast with periodic updates from the OR that all was going well; and another three hours later, the neurosurgeon was standing in front of us with the full report of all that had transpired.  Of course his first words were that they had experienced a couple of unexpected complications; but he was quick to clarify that they were not too serious, only causing them to take longer than they originally expected.  The cord had not been attached as simply as they had hoped and required additional thought, time, and precision; but the end result was that they were able to successfully release the spinal cord, for which we are thankful.  The other issue that occurred was some small skin tearing as they removed some of the surgical drapes {which is not desired since it is prone to infection, but which can be common in young pediatric patients}.  This will be carefully watched along with the surgical site over the next few days, but we are hopeful that proper care will aid a quick healing process.  Noelle came back to us extubated {we never even had to see the breathing tube or ventilator this time!} which has never happened with any of her past surgeries, so we were especially thankful and thrilled for this added blessing.  We are now adjusting in a new way since we are accustomed to ventilator noises and monitor alarms consistently sounding for at least a few days after such a procedure.  Our room is now very quiet in comparison!  As we have settled into the evening and Noelle has begun to awaken, she has shown both positive signs of her normal self as well as negative signs that she is indeed in a fair amount of pain.  We are relieved that she seems to be easily distracted most of the time, and her pain is being managed as much as possible with medications.  We will continue to update over the next few days as she begins the healing process, but we thank you for your love, support, and prayers through this time.  We have been nothing but encouraged throughout the day, and God was more than gracious to us along the way.  We are once again humbled by His goodness and faithfulness to us.

 

***We will share more pictures soon as we have more time and energy***

Comments { 1 }

On the eve of surgery…

DSCN8681

~The little ham on her 2nd birthday~

As many of you are aware, Noelle goes in tomorrow morning for surgery to de-tether her spinal cord {more information on this condition can be seen here }.  You would think I would be used to this by now and in many ways I am, but in a lot of other ways I still am not.  Preparing for this particular surgery has been entirely different for us since all three of Noelle’s previous procedures were more emergent in nature, usually giving us little {if any} time to mentally or physically prepare ahead of time.  This time, we were given the choice on whether or not to proceed in this way, making our decision much more difficult.  We spent time praying and discussing, weighing all the pros and consequences of doing it or not.  In the end, God gave us peace about the decision, directing us through the process even down to the final timing of the surgery.  We deliberately pushed the date out to December {for a lot of reasons, too many to share on here at the moment}, not knowing that Noelle would have only recently begun to walk as we neared the date.  God’s timing is impeccable, and the medical team has been thrilled that she has learned the motion and motivation for walking before the surgery, but she has also not established a pattern or gait which will hopefully more easily allow her to adjust to a proper walking pattern after the surgery as she begins to work and use the correct muscles {if all goes as hoped/planned}.  We have been so grateful to have these weeks to continue to pray and spend time together creating special memories as a family, and we are looking forward to what lies beyond the surgery and all the possibilities this surgery may allow for her.  But if I were to be completely honest with you, I would also tell you that in many ways I am not excited about tomorrow or the coming days in the hospital.  The memories of Noelle’s first 8 months and life in and out of the hospital are very fresh, and we are more aware than ever of the risks that lie before us.  The papers we have signed this time {and many times} declare that our baby may have brain damage, develop _____ complications {the blank is filled with a variety of things}, or even die.  You might be surprised though to find that these are not things that keep me up at night or that make me sober about entering the hospital again.  No, instead it is the “daily grind” of the procedures and hospital life that I do not relish in these situations ~the IV sticks, the blood sugar pricks, the blood draws for labs, the constant beeping of the monitors, the endless parade of medical personnel, etc….  And yet, it is also these things for which I am thankful, for they are necessary and {mostly} helpful in this process to better health for Noelle.  So while I am not thrilled about putting Noelle through the “no fun” stuff of the next several days, I am also hopeful for the end results.  I do not lie awake at night worried about the possibility of brain damage, complications, or death because Noelle’s life and well-being are not sustained by her medical team, but by our great God~as we have so clearly seen in the past.  And when the negative memories come to mind, I choose not to dwell on the “daily grind” things of hospital life, for they will pass.  Ultimately, I am grateful.  God is faithful and will see us through once again ~ regardless of the final outcome, that fact is certain.  So you may find us tired, you might see concern and watchfulness in our eyes, you might even see tears beneath the surface; but I pray you will also see smiles of joy, much hope, and true peace.  No matter what happens, we are thankful to know that He sovereignly holds the future, and in Him we trust.  Thank you for praying with us to that end.

 

***We will do our very best to update the blog with details as we are able throughout Noelle’s surgery and hospital stay.  Thank you for your many words of encouragement and your prayers.  We truly appreciate them all, even if we are not able to individually respond at the time.***

Comments { 1 }

Two Years Old

Nolle4176

Our dear Noelle,

On this day, your second birthday, we cannot help the tears that glisten our eyes as we reflect upon the life that God has allowed us to experience with you.  The journey has been long and difficult and certainly has not been void of pain, struggle, and many tears; but it has also been amazing, incredible, and full of more joy and happiness than we might have ever imagined or hoped.  Through your tiny life, we have seen God work and display His power and might; and over the past twelve months, we have watched Him grow and change you from a baby into a toddler, encountering growth and change in our own lives through the process.  We often recall the days of uncertainty, the vigorous fight between life and death, the sweet milestones, the heart wrenching setbacks, the relationships forged, the endless beeps, the sleepless nights, the surgical waiting room ~ the list is endless.  Although many memories bring sorrow for what you had to physically endure, even those moments are filled with gratitude for what God has done in your life.  On the day you were born, no one could have imagined this day or what it might look like.  They did not know that you would have just recently begun to independently walk, that you would be able to enjoy birthday cake for the first time, that you would still be a relatively tiny person, that you would laugh with delight when your daddy walked through the door, or that you would puff out your cheeks and say “Boo!”  when asked, “What does the cow say?”  The “normal” or typically mundane has become significant to us, and we treasure each day that God has allowed us with you.  You are a constant reminder of His grace to us, and we are daily humbled by all He has done for us through you.  We pray for you, little one, that you will one day know our Savior, experience His salvation personally, and truly reflect His grace through your life.  Our tears today are full of joy, an evidence of hearts overflowing with love for our great God and subsequently for you; and we look forward to continuing to watch His hand at work in your life.  Happy Birthday, precious girl.  Our lives could not be sweeter…

Love,

Daddy & Mommy

jill-8725-001*Photos courtesy of Deborah Hendrix http://portraitsbydeborah.com/

Comments { 8 }

FOX 8 Update

PageLines- WGHP--Fox-8----Greensboro---Winston-Salem--NC.jpg

Many of you have learned about our journey and faithfully followed the stories through Noelle’s first year on our local FOX 8 news channel that Bob Buckley weaved through his special reports.  Another update is scheduled to air tonight on our local FOX 8 station at 10:00 EST.  If you are not local and would like to view the story live, you can watch the newscast online at http://myfox8.com/on-air/live-streaming/.  We will also post the story after it airs and is uploaded to the FOX 8 website.  It is amazing that we are nearing two years with our sweet miracle, and we are so thankful for these documented memories.  They are more pieces of evidence to help Noelle one day understand all that God has done in her precious life.

Comments { 2 }

Twenty-three Months Old

DSCN8553

~Twenty-three Months Old~

Twenty-three months.  Wow.  I can hardly believe we are only a few short weeks from celebrating two years with our sweet girl ~ this year has flown by so quickly.  The last month has been busy, to say the least.  We have yet to have a month without doctor appointments, but this month was especially busy with various appointments each week on top of her regular therapies.  Included in those was a pretty important MRI which resulted in some heavy decision making for our family, but we will share more details about that in just a bit.  Despite the craziness, we managed to pack in a trip to the pumpkin patch as well as a unique little farmers’ market, and we generally just enjoyed our time together as we were able.

DSCN8472

~My Size Pumpkin~

Noelle added some fun tricks to her repertoire in the forms of sticking out her tongue with a “lalala” {when asked where her tongue is} and placing both hands on her head when asked where her hair is {although that one does not entirely count since this is also the “answer” given in response to where is her nose, eyes, ears…anything besides her tongue}.  She continued to make strides in her ability to eat some new things through occupational therapy and also added to her capabilities in physical therapy by learning to come down the stairs by herself, get to a standing position without assistance, and walk.  Yes, as of today, she is WALKING!!!

DSCN8483

~First Pumpkin Patch Trip~

She has taken a couple of steps a few times over the past three months and has no trouble pushing an object while walking behind it, but she has struggled to reach the point of being able to “take off” and gain the consistency needed to make one step after another completely on her own.  But today, on her twenty-third month “birthday,” it all came together as she worked with Beth, her physical therapist; and we could not be more thrilled for her to reach this incredible milestone.  We never doubted that she would walk, but because she has been on the verge of it for so many weeks, we were beginning to be concerned that she would not be able to do it completely on her own until after her surgery.  But I am getting ahead of myself and need to back up and explain…

DSCN8512

~Early Morning MRI Go Time~

Six months ago, Noelle had an MRI performed on her spine, confirming that her spinal cord was indeed tethered as well as revealing a growing cyst that was of great concern.  It was the cyst that caused us to be repeating the MRI again so soon since the tethered spinal cord was not presenting an issue at the time.  The procedure was similar to that of six months prior, although it took quite a bit longer due to Noelle’s issues with anesthesia {last time she stopped breathing, and they had to remove her from the machine during the procedure}.  Thankfully, while our waiting time was significantly increased, she never stopped breathing and handled things well overall, although it was early evening before she began to truly act like herself again.

DSCN8515

~Sweet, groggy smiles after the MRI~

We were extremely grateful to learn that the cyst had not increased in size {it had possibly decreased by a millimeter or two}; but after reading the MRI images and examining Noelle in person, her neurosurgeon recommended that it was time for us to proceed with the surgery to de-tether her spinal cord.  It was not a decision we had to make immediately as it was not an emergency situation; but Noelle’s improper attempts at walking were revealing extreme weakness and thus tightness in the muscles typically used for walking, strongly indicating that the tethered spinal cord was creating the issue and not allowing things to function normally for her.

DSCN8521

~Very groggy, but still ready to bust out of here!~

We spent several days in prayer to God and in consultation with her physical therapist and other trusted friends/medical professionals, finally reaching the conclusion that it was the right time for us to move forward with the surgery.  We will continue to share more as the time approaches and more details are made available to us, but she is currently scheduled for surgery on December 13th, and we truly appreciate your continued prayers for our precious girl.

DSCN8539

~A little more coherent, waiting for the results~

But for today and the next few weeks, we have decided to simply enjoy these precious milestones that continue to occur in her life, peacefully trusting that God is continuing to guide and uphold us on this incredible journey.  I had originally thought that I would do some sort of thanksgiving challenge through the month of November, as I did last year; but while time has not allowed for that much writing during these busy days, it has not changed the realization of how God has reshaped our hearts as we have traveled this path.  The attitude of a grateful heart is not simply for November, and I am forever grateful that He is teaching us to marvel at the small things while recognizing Him through it.  This “big” 16 lb. girl who came to us in such a tiny package has been the instrument of grace to us in more ways than I could ever hope to capture in word; but we bear the marks in our changing lives, and for that we say, “Thank you, Lord.”  Celebrating twenty-three months could not be sweeter…

DSCN8503

~With thankful hearts…~

Comments { 7 }

Twenty-One & Twenty-Two Months Old

DSCN8360

~Growing Up~

Since Noelle turned twenty-two months old today, I figured it was time to finally catch up on the last two months that I have missed.  We have been so grateful to experience such normal things with her this summer, and we packed in what we could while the weather continued to stay warm through these last few weeks.  In addition to all of that, we also enjoyed watching our baby truly transition into the toddler stage as she began to walk while pushing things, took her first couple of steps on her own, turned into a little monkey climber, and demonstrated through her growing personality that she is quite the ham!  Her health continues to improve as she avoids common illness, although it has still been evident that we must continue to aggressively battle the reflux.  However, once we came through our last flare-up, she finally turned a corner in her eating abilities and has experienced a growth spurt unlike we have seen all summer, now weighing close to 16 lbs.  Our days are full of training, therapy, and so much love and laughter that our hearts are simply full as we pray with her each night and thank God for her.  Pictures always seem to tell the story best, so here are some highlights from the last several weeks that we have enjoyed…

DSCN8319

~She has turned into quite the little “helper”~

DSCN8345

~Our little monkey (and yes, she figured out herself to pull the drawer out and climb on it!)~

DSCN8355

~Working hard to figure out this walking thing~

DSCN8370

~Enjoying two favorite pastimes: eating ice cream and watching cars drive by (she loves them!)~

DSCN8388

~Fun at the playground~

DSCN8397

~Loves to help Daddy too~

DSCN8419

~The best view on our walks~

DSCN8429

~She met a horse…~

DSCN8435

~…and a puppy (more on him in a future post)~

DSCN8440

~She discovered a love of chocolate chip cookies!~

DSCN8454

~Nearly anything with a motor captures her fascination (and her desire to “help”)~

The growth we see these days extends far beyond her size and reaches to her understanding and responses to us in various situations.  In a recent evaluation, she averaged a 12 month level, so we still have a lot of catching up to do; but thankfully we have therapies in place to assist us in this regard, and although it requires great attention, time, and diligence, I do not find it to be tedious, especially considering our overall circumstances of the past two years.  It is a joy to to spend my days with her, and I treasure these moments that now seem to quickly pass us by.  The next few weeks hold more specialist appointments, one of which includes a repeat MRI and evaluation of her spine after the report we received last April.  We have not seen any concerning symptoms arise, so we are hopeful and praying that the issue has resolved in these last few months.  We will continue to keep you updated and are also excited to share a new series of posts that will be coming this fall as we truly begin to reflect on what God has taught us thus far through this experience.  We look forward to remembering all that God has done and thanking Him as we mentally traverse this journey once again and see how He has grown us.  In closing, I will share one of my favorite pictures of the summer…I cannot thank God enough for this man who is not only my husband and best friend, but also the best daddy this little girl could ever want.  Their relationship to me is priceless…

DSCN8445

~Best Buds~

Comments { 9 }

Twenty Months Old

Well, since we are only a few days away from our twenty-first month post, I figured I had better catch up on this one!  I had every good intention of having this done much earlier; but life happens, and we have been busy enjoying the last few weeks of summer before we settle in for the cooler weather once again.  Noelle’s twentieth month was packed full of activities such as swimming at the pool, visits with her great grandparents {two sets of them!}, celebrating mommy’s and daddy’s third wedding anniversary, a trip to Kentucky to see two of her cousins, as well as her continued therapies and doctor appointments.  Amidst all of that, we marked one of the sweetest milestones thus far….one year out of the hospital.  This one was incredibly significant to us because after we nearly lost Noelle {again} last June, we were guaranteed by some that she would not make it through the winter without at least one more journey through the PICU.  However, even though we experienced one of the worst flu/RSV seasons in ten years, God had different plans and kept her free from all the common illnesses that plague many people during those particular months.  To say that we were relieved and thankful does not even begin to express our emotions on the subject, and we continue to thank God for each day that He allows us with our precious girl.  As always, the days are best expressed in pictures, so here are just a few snapshots we captured of Noelle’s life through this month.  We look forward to sharing more in a few days!

DSCN8230

~ Always Daddy’s Girl ~

DSCN8241

~ Celebrating 3 years of marriage and 20 months with this sweet girl ~

DSC_0389

~ Enjoying bath time with cousin Ellie ~

DSC_0405

~ A week of fun and play together! ~

DSC_0458

~ The “My Daddy vs. My Uncle Josh” stare down ~

DSC_0407

~ Watching the big truck outside ~

DSCN8250

~ Trying out our new sun chair from “Ju” (Grandma Jan) ~

DSC_0435

~ Sweet laughter at the pool (and one of my favorite photos of the summer) ~

Comments { 4 }