Sunday, November 18, 2012

Giving Thanks Challenge ~ {Days #16 & 17}

Thanksgiving Challenge ~ Day #16 & 17
Topic: Noelle
Title: The Birthday Book & Precious Relationships

{If you are new to this challenge, you can catch up on the details here, and please feel free to join along at any time...}


~Developing the Book Cover~
Day #16: The Birthday Book

We want to say a special thank you to each of those who took the time and love to write a note or letter for Noelle's birthday book.  We are in the process of answering each one of you; but in the meantime, we wanted to attempt an expression of just how much this means to us.  Our desire is for Noelle to one day understand how God's grace has been absolutely lavished on her little life, since the moment of conception.  We know that He has a plan and purpose for her, and this book is yet another snapshot of just that.  Since she will have no memories of all that has taken place through the past year, this book will serve as a piece of tangible evidence to her of God's grace and the love and prayers of so many people.  We are beyond blessed to have had your faithful prayers through these many months, and the submissions for this book are simply an extension of all the thoughts and prayers through this past year.  "Thank you" is hardly enough, but it seems that it is the most we can say at times.  Whether or not you had the time to be a part of this project, if you have spent any time praying or doing an act of kindness for us, we truly appreciate your impact on the life of our family.  Thank you.

~The Book In Progress~



Day #17: Precious Relationships
I could spend days listing individuals whom we have met along this journey and tell stories of all they have done for us, and someday I do hope to be able to individually thank them.  But as I scroll through the memories of person after person who touched our lives, the list seems to grow longer and longer, overwhelming me with God's goodness and the efforts of so many to aid the life of one so very small.  I can truly say that I would not trade this past year if it meant that I would never know these individuals.  Some are doctors and nurses; others belong to the news crew.  Some cleaned the floors and emptied the trash in Noelle's space each day, while yet others wrote us notes and prayed from around the world.  Many we have met face to face, and others we have not.  But all of them have become friends, some even very close.  They have walked with us, cried with us, laughed and shared joy with us, and supported us; and when coupled with the relationships we have already treasured for years ~now grown closer through this trial~ I find that our lives have been abundantly blessed.  God was so gracious to give us not only our sweet baby but also the new friendships and deepening of old friendships which we have received through this experience.

***Bob Buckley with our local FOX 8 news station will be doing another update, airing on Tuesday, November 20th during the 10:00 evening news hour (previous reports may be see here).  If you would like to watch it live and are not local, you may watch the livestream hereA special report on the FMC NICU will be aired tomorrow night during the 10:00 evening news hour to show some of the results of the fabulous work these people do each day.  Links will be provided after the stories air if you are unable to watch them live.***

Thursday, November 15, 2012

Giving Thanks Challenge ~ {Day #15}

Thanksgiving Challenge ~ Day #15
Topic: Noelle
Title: A Much Improved Health Report

{If you are new to this challenge, you can catch up on the details here, and please feel free to join along at any time...}

I have been blessed to experience very few health challenges in my life; and the few things I encountered along the way have all been manageable with very little medical intervention.  And although I come from a family full of medical personnel, we all seem to do our best to pursue a more "natural" route and avoid medicines and the doctors' offices as much as possible.   So this year has been one of much change, especially in the way we have mentally handled things.  Noelle's severe health issues and compromised immune system have never afforded us the option to allow things to run their natural course, as this choice would have taken her life more than once.  So while I look forward to the day we begin eliminating medications and crossing issues of the list, in the meantime I am very grateful for the medical intervention we have received with so many doctors and medications and treatments made available to her.  This has been a big week for us, not simply because we had so many appointments, but because these were very crucial follow up visits after giving her body some time to heal from her last bout with pulmonary hypertension and the long hospital stay.  We expected some good news, based on her clinical condition we were seeing at home; but I think we were still surprised at the level to which she had improved.  We could spend a full day being thankful for each one of these following items:

1.  Noelle's pulmonary hypertension is greatly reduced, and her heart is demonstrating normal function once again.
2.  She is doing so well with her saturation levels, she is now allowed to be sans oxygen during her wake times (she still wears it while sleeping only).
3.  We will be eliminating one of her medications within the next couple of weeks.
4.  She has shown good overall growth in the last three months.  They did increase her calories to help her continued growth, which has slowed down; but her long term growth is still looking great.
5.  Her plagiocephaly has improved immensely, and it appears that she is in her final eight week stretch of wearing her helmet.
~Left Side: Noelle's flattened head, 4 months ago~ ~Right Side: Noelle's head this week...almost completely round!~

The summary is that her overall health report is very much improved, and her entire medical team is extremely pleased with her progress.  So although it has been a full and very busy week, the subsequent good news from each doctor has given us much encouragement and yet another reason to be ever thankful.

Wednesday, November 14, 2012

Giving Thanks Challenge ~ {Day #14}

Thanksgiving Challenge ~ Day #14
Topic: Noelle
Title: A Special Letter

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

As the submissions for Noelle's birthday book have been arriving in our inbox, it has been humbling for me to once again be reminded of how many people have loved and prayed so earnestly for our little girl.  Some are friends from years past, others for only a short time.  They hail from all corners of the globe; and there are many whom we have never met face to face, but the miracle of Noelle and the bond of Christ have created a connection.  Whether a short note of prayer or a long letter filled with memories, each submission is precious to us as we create this memory book that is so dear to our hearts.  I have realized that this book is not for Noelle alone, not even for our family alone.  These notes and letters, written with careful thought and much love, are a reminder of God's continuing miracles and grace in this life.  So as some have requested, we will be sharing the submissions from time to time so that all may be encouraged by them.  We truly appreciate each and every one and thank you from the bottom of our hearts for the time and love you have so graciously poured into this effort.  Tonight, I share one that we received today that immediately transported me back to the moment Noelle was born and the incredible uncertainty mixed with both joy and sorrow that were felt that day.  As I read this, tears filled my eyes and clogged my throat, and I was reminded once again of the amazing grace and miracle that God granted to us.  We are so very blessed...

Birthday Book Submission from Christina Burton, RN (FMC NICU):
~Christie & Christina (Our OR NICU nurses) holding Noelle on Discharge Day~
 
Dear Sweet Noelle,
I was one of the RNs in the OR the day you were born.  I had been updated on your mother’s history and what had been going on during her pregnancy.  What I “assumed” was that you would be delivered and after you were assessed by the NICU team, we would give you to your parents so that they would hold you while you passed away.  Because of your estimated size at birth, I “assumed “  we would not be able to maintain your life with the equipment we had in the NICU. 
Your birthday was yet another day in my life that has taught me that I cannot “assume” anything when God is in charge.  You were so very tiny when the OB surgeon lifted you from your mother’s uterus.  I stood at a distance while Dr. Tatum and other members of the NICU team began working with you.  I would be lying if I said that I thought you would make it out of the OR alive……I truly “assumed” that you were too small.  As the team continued to work on you, I saw you move around and heard you make a very small cry.    Dr. Tatum succeeded in getting you intubated and we took you to your bed spot in NIC1, bed 3.  I will admit that again I did not believe that you would survive much longer once we got you to the NICU.  I didn’t feel like the equipment could sustain your tiny body.  How anyone was ever able to insert an umbilical line in your cord I did not understand at that time.  I must admit that during your admission (done by your admit nurse Amanda Lamm RN) I questioned whether we were doing the right thing.  I knew that your parents had already been told that you would probably not survive in utereo much less survive long outside the womb.  I wondered if it would be easier if you had passed away right after birth rather than get your parents’ hopes up, and then they possibly have to make difficult decisions about what to do.
As the days went by and I got to know you and your wonderful parents, I realized that my “assuming” was wrong.  You got very sick and gave the NICU staff and your family many scares.  But through it all, I grew to love you and pray for you to survive.  I learned more about your story and what a gift from God you really were.  I learned about the love your parents share and the love they had for you, even before you were born….no matter what.  What I had “assumed” after many years of working in the NICU was all proved wrong.  I had lost sight, those many years in the NICU making me somewhat jaded and hardened at times, that miracles do happen every day.  You Noelle, are a true miracle.  A miracle from God, given to two of the most God loving people I have ever had the pleasure of knowing. 
I am so glad I was in that OR the day you were born.  I am glad I got to know you and your parents.  I am glad that you survived against all kinds of odds and “assumptions”.  I am glad that God is using you and your parents as a living testament of His love for us all and for the power of prayer. 
Noelle, I am grateful that you and your parents came in to my life.  I feel privileged to have been a part of the beginning of your life.  I know that God is always present in my life, but I am so thankful that you came along to remind me to not “assume” and to remember that ultimately, no matter what, God is in charge!  Funny how a little 12.55oz miracle baby has helped bring so many people to God and open up their hearts to allow Him in.
I look forward to continuing to watch you grow and cannot wait to see what else God has in store for you and all of those around you!
Love,
Christina Burton RN
Forsyth Medical Center
NICU

***There are only 2 days left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are putting the book together and enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Tuesday, November 13, 2012

Giving Thanks Challenge ~ {Day #13}

Thanksgiving Challenge ~ Day #13
Topic: Noelle
Title: This Baby's Laugh

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

Tonight, the video says it all {I apologize for the poor quality, but I was capturing this moment on my own while making her laugh at the same time}.  Enjoy!!!



***There are only 3 days left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are putting the book together and enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Sunday, November 11, 2012

Giving Thanks Challenge ~ {Days #10-12}

Thanksgiving Challenge ~ Days #10-12
Topic: Noelle
Title: Great Grandparents, Our Church Body, & Noelle's Medical Team

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

I am woefully behind on posting yesterday and today, and with an extremely busy week being already underway, I have decided to catch up the posts on which I am behind, as well as get ahead by one post and include tomorrow's thankfulness challenge.  Unfortunately, this may happen a few times over the next couple of weeks, due to our schedule; but my heart and mind are still dwelling on this challenge, even if I do not have the time to write it out each day.  Thank you to all who have commented and participated along the way.  You have been a blessing to me!

Day #10: Great Grandparents
~Four Generations (Noelle: 4 months old)~
Many children are blessed to have loving grandparents, but few are privileged to meet their great grandparents.  I was one of those few, being the daughter of very young parents and grandparents. The memories I have of my great grandparents are not many, but they are precious to me; and I am thankful for the heritage they have left in my family.  I still have one great grandma living who will {the Lord willing} be visiting and meeting Noelle next week; and we are eagerly anticipating the opportunity to spend time with her and capture a five generation picture {which I am sure to cherish forever}.  This will be possible since my mom now resides here, and her parents {my grandparents / Noelle's great grandparents} live within a two hour distance; so we are blessed to see them fairly often.  I do not know how much time the Lord has given to us with them, but I am grateful for the opportunity that Noelle has to grow up near them and know them.  They are incredibly special people in our lives; and every time we visit, we envision Noelle one day walking hand in hand with them through the vegetable and fruit gardens, sneaking a bite of a plump, red strawberry or a juicy blueberry, gently tossing feed to organically raised chickens, or swinging on the porch in the summer breeze.  G-Pa and Gigi are very much loved, and we thank God for the opportunity to live so close and spend time with them!


~The Boyers: One of many, always ready to answer our call~
Day #11: Our Church Body
Throughout the course of the first several months after Noelle was born, we were often asked if we had family in the local area, causing smiles to cross our faces.  "Yes and No" was always the reply, followed by a short explanation of the fact that we did not have blood-related relatives in the immediate area; however, we did have our church family, and they were supporting us in ways we had never even imagined.  While one friend organized freezer meals, another picked up lunch and brought it to us at the NICU.  Others "kidnapped" us for an hour to escape the hospital and grab a bite to eat, and still more provided gift cards for gas, food, and other needs we had not even stopped to consider.  This and so much more was done for us; but beyond the physical needs for which they cared, the spiritual needs were met as well while they earnestly prayed, visited, sent notes and cards, and encouraged us in every way possible during our journey.  Of course there were many who did some of these things from long distance as well, but there is something special about having that connection with someone nearby, someone who will pick up the phone at any hour of the day or night and drop everything they are doing to get on their knees and pray or come and sit with you at the hospital as you wait for your child to go through surgery....again.  Our blessing was that this "someone" was not just one single person.  We had and still have an entire list of these "someones" who have made themselves available to us for absolutely anything we might need and more.  Anything I could say here would never be adequate enough to thank our church body for all that they have done and continue to do for our family.  We are blessed beyond measure to belong to a body that truly endeavors to practice Christ-likeness to others in a very tangible manner.  Thank you, Twin City Bible Church!  We love you and thank God for you all!!!


Day #12: Noelle's Medical Team
As we embark upon a week full of appointments {six, just for Noelle alone...}, I can sometimes become overwhelmed.  Planning and coordinating efforts for this amount of appointments takes some time and preparation, and it is easy for me to choose the wrong perspective and begin complaining.  However, when I step back and evaluate things honestly, I can be nothing but thankful for these appointments and the doctors who care for Noelle, many though they may be.  The plethora of medical team members has been incredibly beneficial to us through these months since our discharge form the NICU; and the combined effort of them all has helped bring Noelle to the point she is today.  I truly like every single one of her doctors and am so pleased with their care and the time they take with Noelle and with us as parents, answering any question we might have.  So although this week will be tiring, I can be only thankful that each one of these people have helped make it possible for Noelle to live at home with us; and all the appointments in the world could not overshadow the thankfulness in my heart for that.  {P.S.  We hope to report some good progress in Noelle's health by the end of this week!}


If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  

***Do not forget there is less than one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Friday, November 9, 2012

Giving Thanks Challenge ~ {Day #9}

Thanksgiving Challenge ~ Day #9
Topic: Noelle
Title: Oxygen {as in the kind you get from a tank}

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}


Oxygen paraphernalia decorates our home these days as it fills corners and weaves its clear, thick tubing through the living room and down the hallway and into the bedroom, or wherever the little girl who is attached to the end of it happens to be.  A box-like machine creates the oxygen Noelle needs on a constant basis, while a large back-up tank and small transport tanks sit on stand-by for emergency power outages or trips to the doctors' offices.  Although it requires some attention and maintenance once in a while or even some additional preparation time before going somewhere, it has become our normal way of life; and we rarely think twice about it anymore.  Well, most of the time.  There have been times in the past, especially when we first brought Noelle home, that I was much more eager to be rid of this inconvenience.  However, I was also grateful to have her off the ventilator and needing only a very low support of oxygen, so my emotions were somewhat mixed.  But that all changed drastically after her eighteen day stay in the hospital a few short months ago.  After weaning off the oxygen for a short time in April, she had begun a very slow and steady decline; and the lack of additional oxygen, although not the cause, became a contributor for aggravating her pulmonary hypertension flare-up.  Needless to say, between that and all of her sleep apnea and study issues, I have not been nearly so eager to wean her this time.  In fact, I have actually preferred that she have the support.  We are often asked when she will be completely sans oxygen, and our answer is the same as what the doctors say to us, "she will tell us."  It is a standard statement that we often hear with much of her care, meaning that they do not really know and can only watch her little body for signs of being ready to take the next steps.  So we wait {patiently, I hope}; and look forward to her appointments on Monday that may give us the signs of improvement necessary to take another step forward and begin the weaning process once again.  They will do it over a long, slow process this time; but I am grateful that Noelle is able to have this same breathing support at home that she once had in the hospital for so long.  Any amount of inconvenience is entirely worth the effort in order to have our sweet girl home with us at all times.  So while I have not always had this attitude on this particular aspect of Noelle's care, I can thank God that He has changed my heart and made me grateful for both the additional oxygen support for Noelle, as well as the natural oxygen He provides for us every moment of every single day. 


If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  

***Do not forget there is less than one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Thursday, November 8, 2012

Eleven Months Old / Giving Thanks Challenge ~ {Day #8}

Thanksgiving Challenge ~ Day #8
Topic: Noelle
Title: Eleven Months Old

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

~Really, Mom?~
I can hardly believe that I just wrote the title, "Eleven Months Old."  Where has the time gone?  There have been so many days through these months that I have not dared to think beyond the next hour or the next day, let alone dream about reaching her first birthday; and yet, here we are celebrating eleven precious months with our little girl and entering the home stretch to her one year birthday.  I am overwhelmingly amazed at God's goodness to us and thank Him for each precious moment we have been given with this little girl.  She weighed 10 lbs. / 10 oz. today and continues to fight and grow, tiny though she still may be.  Happy Eleven Month Birthday, Noelle!!  We love you!!!

{Although she is still on oxygen 24/7, she is doing well enough for us to remove the cannula for short moments of time, such as snapping pictures. }

If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  


***Do not forget there is only one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***