Giving Thanks Challenge ~ {Day #30}

Thanksgiving Challenge ~ Day #30

Topic: Noelle
Title: You

{If you are new to this challenge, you can catch up on the details here }

On the final day of this Thanksgiving challenge, I cannot help but be thankful for you.  Yes, you, the one reading this post.   This experience has opened up a completely new world to me ~ a world I thought I did not need.  The process into blogging this journey has not been without great thought, but it has been so much more rewarding than I ever dreamed possible.  So many of you have cried with us, prayed earnestly for us, laughed with us, and shared in as much of our experience as you possibly could do.  You have written kind notes and comments, sent thoughtful gifts for our baby girl, provided gift cards and funds to supply food and gas needs while in the hospital, and you have encouraged us most by your unending, faithful prayers.  I never would have imagined how one, tiny baby could touch so many lives; and we are humbled to watch God using her journey to draw others to Himself.  As we close this Thanksgiving challenge {although not in our hearts}, the overflow of this month seems to be spilling over and culminating as we turn to celebrate Noelle's first birthday in just over one week.  My heart is so full as I work on some special projects for this momentous occasion; and as I look at my precious daughter these days, tears often fill my eyes as my lips whisper, "thank you, God."  I am grateful that He knows my heart, and my simple words are enough.  The postings this week will be rare {if any} as we prepare a special project to launch on the blog on her birthday, December 8th.  As a prelude to that surprise, I am sharing a look back at the early days, the very beginning of this journey.  Thank you for walking this journey with us.

Noelle ~ A Look Back from Jill Aguiar on Vimeo.

A look back at Noelle's introduction to life and her first four months in the NICU.

Music credit is "Wonderfully Made" from the "Hidden in My Heart" collection by Breakaway Music.

Giving Thanks Challenge ~ {Day #29}

Thanksgiving Challenge ~ Day #29

Topic: Noelle
Title: Reflux

{If you are new to this challenge, you can catch up on the details here }

As we approach the end of this week and the end of this particular challenge, I look back and truly see a work of God in my heart.  I must admit that most of the subject items each day have been easy things for which to be thankful.  There have been a few sprinkled through the month that have been challenges, but even those do not seem so difficult in light of the worst things we have experienced over the course of the previous fifteen months.  But as Noelle had another reflux flare-up this past week, I realized this was one particular issue for which I had not ever chosen to be thankful.  In fact, I have despised it.  The hiccups, coughing, and throwing up copious amounts of her feedings have frustrated and discouraged me, leaving me in tears on more than one occasion.  In everything give thanks.  The command from I Thessalonians pricks my conscience and echoes through my mind like the resounding notes of gently plucked harp strings.  The context is not lost on me as I ponder the words, for it is is preceded by the directives to rejoice evermore and pray without ceasing and followed with the reminder that this is God's will in Christ Jesus.  I cannot give thanks in my own strength; it must come from Him.  Many sermons on this passage have met my ears through the years, but I need yet another reminder of the true meaning behind the words.  Upon some closer examination, the text becomes more convicting as the individual words come into focus and then meld with their surrounding context.  Consulting of definitions and commentaries, while perhaps providing further detail, reveals that it is truly "that simple."  Each word is literal in its meaning, and we are to give.thanks.in.everything.  Even reflux.  So as my mind chooses to obey the command and urges my heart to follow suit, I find myself praying tonight with a thankful heart for reflux.  But now it is no longer the issue of reflux.  No, God has uncovered the pride in my heart, shining light on this area in my life that needs such change.  While it is a lesson that my sinful self will need to be reminded of again {as this is already not the first time}, I am thankful tonight that my God is ever loving and patient to use this challenge  to teach me that I must in everything, give thanks.

Giving Thanks Challenge ~ (Days #23 ~ 28}

Thanksgiving Challenge ~ Days #23 ~ 27

Topic: Noelle

{If you are new to this challenge, you can catch up on the details here}



The past Thanksgiving week has been extremely busy, yet filled with much joy as we were able to spend time with our family {Day #23}.

~Noelle celebrating Thanksgiving in her outfit, handmade just for her with love by Auntie Em~

Because of all that has transpired since June, we were unsure if we would be able to travel and were also constrained by the health of everyone who would be surrounding us.  Flu shots had to be administered to all, good health had to be maintained, and other various guidelines followed {which is no easy task when you are trying to connect your family from five states}.  We cautiously prepared, keeping in touch with everyone planning to attend and always being ready to stay home and employ Plan B if it became necessary.  However, after a final check-up on Monday and knowing that one of my sisters is a PICU nurse and another family member is a Pediatric Intensivist, we were cleared to go as far as Noelle was concerned.

~We were unable to obtain a picture of the entire group, but we did get all the girls!~

Tuesday was our departure day; and by God's grace, we made it to that point with everyone having met the needed requirements.  We packed {and packed, and packed some more!} and began our drive {no flying for us for a long while yet, due to exposure} to my sister's home in Kentucky.  Along the way, we had the wonderful blessing of stopping at my grandparents home and capturing a five generation photograph {Day #24}, as my great grandmother was visiting them for the holiday. 

~Five Generations~

What a precious moment this was, and I am so grateful to have been able to spend time with my great grandma and snap these photos that we will cherish forever.  On Wednesday, we continued our drive to Kentucky; and while a little tired of the car seat at times, Noelle did extremely well on her first road trip.  Upon arrival, we were greeted with smiles of joy from loved ones who have long prayed and anticipated the moment of meeting our little miracle; and any fears of how the situation might be handled through the week were immediately quelled as everyone gave space and utilized the hand soap and hand sanitizer that were readily available throughout the house.  One of my favorite aspects of this trip was that Noelle was able to meet her sweet cousin {Day #25} on this trip.  Although she was supposed to be five weeks older and the first grandchild, Ellie is two months younger and now the second grandchild on our side of the family.  However, you would never know it to see the two of them together!

~Noelle & Ellie, standing side by side~

As we did a little candid photo shoot with them before leaving {after Purelling Ellie from head to toe...literally!}, we were certain that we could see a budding friendship destined to last for the rest of their lives {well, perhaps it was wishful thinking, but we will assume that to be true for now!}.

It was so enjoyable to spend the Thanksgiving holiday with our family, especially as we rejoiced in the little miracle we held in our arms.  We traveled home with full and thankful hearts, refreshed with the sweet fellowship we had shared throughout the week.  As we unpacked and settled back into our routine, I was reminded of how grateful I am for the layout of our apartment {Day #26}.  This may seem silly; but in our situation, it has significance.  While at my sister's, we were able to borrow Ellie's video monitor while Noelle took naps upstairs in the bedroom.  Had we not had that device, I would have been sitting in the hallway through all of her naps, making sure her oxygen saturation stayed level since the pulse oximeter alarm could not be heard downstairs.  However, at home, we have one level, and Noelle's cradle and monitors sit directly inside our bedroom and can be seen all the way down the hallway.  I can hear her and her alarms throughout the apartment, and I realized not only how convenient this has become for us, but also how comforting it is to know that she is just that close all through the day.  She is continuing to progress well, and although she is still gaining weight slowly {weighing 10 lbs. / 13 oz. today} and is somewhat behind in her gross motor skills, she is still moving forward, and we are enjoying every moment.  She is beginning to sit up {Day #27} with some support, and I think she may be doing it completely on her own by her birthday!

~Practicing Sitting Up~

Milestones such as this mean so much to us, as each one represents yet another aspect of God's grace in her growth and health.  Finally, as I perused pictures today for this post, I was reminded of yet another special blessing for which I am thankful: Noelle's eyesight {Day #28}.  Many of you remember that she received eye surgery for ROP in February, but what I have not mentioned on the blog {due to the events of June that followed shortly after her last eye appointment} is that although her last exam still showed positive results as far as the ROP was concerned, the opthamologist believed that she is going nearsighted and would need glasses by the time she is one year old.  Honestly, glasses are the least of our concern, since we are just grateful that she can see at all!  This diagnosis has yet to be confirmed until our appointment on December 10th; but after watching her closely through the last several months, I am not certain this will be the case.  She seems to be able to see across the room without difficulty, and this was confirmed by the following photo.  As her Uncle Nathan held her in one part of the kitchen during our Thanksgiving holiday, Noelle caught a glimpse of her daddy on the other side of the room, and her response was captured in this picture.  Need I say more?  To say we are grateful seems hardly enough...

~Smiling at Daddy across the room~

Giving Thanks Challenge ~ {Days #18~22}

Thanksgiving Challenge ~ Day #18~22

Topic: Noelle

I have much catching up to do and a full heart as we wish you a wonderul Thanksgiving Day, continuing this season of thanks to God for all He has done.

{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...}


Day #18: Noelle's Cry

A dear friend from college, Amber Olson, recently sent me a poem she wrote with Noelle's cry as the subject.  It brought tears to my eyes as it so poetically captured our feelings on this precious sound, especially during those early months.  This poem says it all {thank you so much, Amber, for this beautiful piece}:

The Cry

Most parents do their utmost

To prevent a child's cry.

We shush and rock and bounce them,

Softly sing a lullabye.

We ache when they are hurting,

And they can not tell us why.

But there was a day a year ago,

When parents strained their ears.

They longed to hear the noise

That often signals baby tears.

And you could hear a pin drop,

As they tried to quell their fears.

For they'd been given awful news

That a mommy's heart had rent,

And the shadows under daddy's eyes,

Proved nights in prayer he'd spent,

And they hoped just to kiss their baby,

Before she off to heaven went.

But a tiny little fighter,

Would make all predictions lie,

And the gracious God of heaven,

Would great miracles supply,

And there were tears - but tears of gladness

When they heard their baby cry.

Amber Olson

November 16, 2012

Day #19: Health Care

One year ago at this time, we were in the process of switching all of our prenatal care over to our specialist.  Up until that time, we had continued to be seen by my regular OB/GYN doctor along with my specialist, since the OB doctor followed my care while the specialist closely monitored Noelle.  It was complicated and meant that I was being seen by one of them every single week; but at the time, we expected to deliver Noelle as a stillborn baby and did not see any reason to find another care provider in the midst of everything we were facing.  The week before Thanksgiving brought the first glimmer of hope we had ever been given; and although we still had no idea what was in store, we cautiously clung to hope and began to consider our options if Noelle happened to be born living.  Still, we did not immediately think to investigate NICU facilities or doctors since this was an entirely new world to us, and we still had no idea what was ahead.  However, all of that began to change when I went in for a check-upwith my regular OB doctor only a couple of days before Thanksgiving.  I had planned to fly and be with family over the holiday, as long as Noelle's heartbeat was still strong, and was excited to hear that fast, strong little sound as soon as the doppler touched my tummy.  But the appointment took a very negative turn as soon as the doctor entered.  She had reviewed our previous week's ultrasound {the one with the first good news we had ever heard} and had come back with a completely different perspective; and although she did not use the term "abortion" {we had absolutely forbidden the mention of it since before there were "issues"} she continually stressed to us that our baby would never be "normal" and she very obviously had a different view on how she would handle our situation. Tom and I left that day, feeling as if every hope we had received the week prior had just been thrown on to the ground and stomped into oblivion.  It was terrible.  I was extremely upset, especially since this doctor would be in the delivery room with us; and if Noelle did happen to survive through the birth, it made us wonder what she would or would not do regarding her care.  We never wanted extreme measures to be taken, but we also wanted everything reasonably possible to be done, if she had a fighting chance.  It still took another twenty-four hours for us pray, talk and work through the situation, seek counsel, and speak with our specialist and genetic counselor; but the final result was that we switchedour entire care over to our specialists, which meant changing clinics/hospital from Greensboro to Winston Salem.  Little did we know that God was weaving His goodand perfect plan through that appointment that seemed so absolutely terrible.  Within two weeks, Noelle would be born, with the exact doctors in the exact facility with the most perfect NICU possible for us and our situation.  I would never choose to repeat that day over again, but I am incredibly grateful to God for using that situation to push us to make the choices necessary in our health care.  He truly put us in the perfect place, in His perfect time.

Day #20: Buckley Reports

When we first met Bob Buckley and his photographer, Eric Sander, we were apprehensive and very leery of allowing them to follow our story. At the time, we had been told that Noelle would not survive, and they wanted to create a story surrounding the Now I Lay Me Down To Sleep foundation, which provides bereavement photography for families who lose their precious babies.  After a conversation over lunch with many questions, much prayer, discussion, and thought, we finally agreed to proceed with their following our story.  Our desire was to make other families aware of this option for grieving families as well as to document what we thought would be the last few weeks we would have with Noelle.  To our surprise and joy, the story has developed into much more than any of us every imagined, and on November 20th, FOX 8 News ran the fifth segment of this story.  This particular clip focused on Noelle's upcoming first birthday; and it has been enjoyable to reflect on this past year, not only with Noelle but also with Bob Buckley, Eric, and Ferlon {his most recent photographer} as we had the opportunity to spend much time with them and get to know them through this process.  They have done a wonderful job with each part of the story, and we have been truly grateful for their hard work and the unforgettable memories they have preserved on film for us.  They have faithfully endeavored to portray what is true, especially as we have shared our faith; and we have thoroughly enjoyed working with them.  If you missed the story on Tuesday night, you can always watch it again here.  Thank you, Bob, Eric, Ferlon, and the FOX 8 News team for all you have done for us through this past year! 

 

Day #21: Sweet Smile

The pictures say it all...

Day #22: Noelle on Thanksgiving Day

I am overwhelmed today as I remember one year ago and all that we were contemplating at the time.  Noelle was making her tiny presence known throughout each day; and I was treasuring each kick as the very last.  We spent time with family, doing all of our normal traditions; but try as we might, nothing was quite the same.  A weight was on our hearts and minds, and I could not help but wonder if the subsequent holiday seasons through the years would be reminders of great sorrow or great joy.  We are thankful every day for this precious miracle, but this Thanksgiving and Christmas season are especially dear to our hearts, considering all that we experienced during this time last year.  As I look at my baby girl today and kiss her sweet cheeks, smile into her eyes, and cuddle her oh so close, I breathe yet another prayer of humble thanks to God for all that He has done.  To say that we are truly blessed hardly seems to be adequate, but we are indeed blessed beyond measure.  Thank you, God.

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!!***