Da-Da

I have a great deal on which to catch up as far as posts go.   Much has happened in the past couple of weeks, both in our family and around the world; and while tragedy and sorrow have encompassed our nation during this season, we have been especially grateful this Christmas to still see such tangible evidence of God's presence and goodness in our lives.  So more posts will come filled with the joy of this wonderful season, current happenings, and announcements for the future (hint: Noelle's birthday book is being expanded and printed for distribution!); but for today, this blog again assumes the role of chronicling the milestones in Noelle's life as she added a new sound to her vocabulary and spoke "Da-Da" for the very first time.  I think my excitement matched that of Tom when we first heard the sound and then again heard it confirmed over and over again throughout the evening.  This sweet bundle continually brings joy to our hearts, and we are so grateful to God for each precious day with her.  We look forward to soon sharing her second Christmas (but first Christmas at home) with you and celebrating the coming of a new year.  Although it is late, we wish you a very Merry Christmas!!

Happy First Birthday, Noelle!!!

 

Today, at 11:27a.m., Noelle turned one year old and marked one of the sweetest milestones in her life thus far.  Knowing that there were many days and weeks in which we never even dreamed of this day, makes reaching it that much more special to us.

So how do we celebrate such an incredible event in her life?  Probably not as you would expect, since many one year old babies have quite the party.  But since we are in the midst of lock down season and still ever mindful of her health, that could not be an option for us.  Instead, it is a day full of memories, thankfulness, and precious family time together.  So rather than a party with friends and presents, we are spending the day delivering a sweet treat and a Happy Birthday card to our NICU family (sans Noelle due to lock down), for this celebration is as much theirs as it is ours.  The day also still holds a few presents and cupcakes (although for pictures only and not to be eaten by the little person who still has no teeth) as we enjoy this special day as a family, remembering how different things were one year ago at this time.

While preparing this slideshow of her first year and formatting the entries for her birthday book (which so many of you lovingly submitted), we have been overwhelmed yet again by God's goodness to us through these many months.  Words just cannot express our true emotions today, and these feelings are often demonstrated with flowing tears of joy.  So with very thankful hearts to a God who has been gracious beyond measure, we celebrate this first birthday with our precious miracle.  Happy Birthday, sweet Noelle!!!

~Birthday Outfit made with love by Auntie Em~

In celebration with us, please enjoy the slideshow and birthday book links below...

Noelle's First Year from Grace Outpoured on Vimeo.
A photographic journal of Noelle's first year of her miracle life.
Music Credit: "Precious Life" from the "Hidden in My Heart" collection by Breakaway Music

For a preview of Noelle's birthday book, you may click and view here.

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 here.  A 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.***

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.

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!!***

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!!***