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.***

Growing On Up

~Incredibly Happy Girl~

While this first, full week home has been a time of adjustment, it has mostly been a time of joy and amazement as our tiny girl seems to be growing right before our eyes.  She weighed 6lbs. 7oz. at her doctor appointment on Monday, and I am excited to see the comparison when we go for her next weight check this coming Tuesday.

~Just so sweet~

~I LOVE to play!!~

Although I would have termed Noelle a happy and content baby before this last hospital stay, there is now a marked difference in her; and the smiles hardly seem to leave her face!  It seems that each day brings more activities, new discoveries, more "talking", and so much growing in both size and development.  It has made us realize how poorly she was probably feeling for quite some time~especially since one of the signs prior to her heart failure was that she was no longer smiling and talking; and she is doing those things so much more now than ever before.

~Aunt Donna dropped by for some snuggles~

Now, the difference is incredible, and many people have remarked how much change they can see in her pictures...imagine the difference we see in person!  This does not mean we are "out of the woods" by any means, but it does demonstrate the effectiveness of her treatment and current medications; and we are very thankful for the close follow-up care she is receiving from our medical team, as well as the continued advice and care from our FMC NICU family, who continues to follow her progress and makes suggestions and voices concerns and thoughts with her care.  It is comforting to have the support and advice from people whom we love and trust and who know our daughter's history even better than ourselves.  Knowing that they have held "mini-rounds" on Noelle with the blog information and multiple texts and phone calls, speaks volumes of their continued love and care for our precious girl.

~Milestone!!  I'm starting to push up consistently!!~

~"I love my new WubbaNub!!"~

Noelle celebrated her first week home by starting to push up (she had done it in the NICU a few times, but only when VERY upset about something being done to her),  getting a WubbaNub (a soothie pacifier with a beanie attached to help her hold it in her mouth--regular pacifiers still choke her), smiling all the time, playing uninterrupted, and sitting up in her Bumbo for the first time! 

~First time in the Bumbo...what a big girl we have now!!~

Bob Buckley with FOX 8 will be doing another update story which is set to air tomorrow night during the 10:00p.m. news.  As always, you can watch it livestream here, or the clip will be available online after the news airs.  We are continually amazed at the relationships that God continues to develop through this situation and are thankful for the wonderful job that Bob and his photographers, Eric and Ferlon, have done through these past months, portraying the story in a way that God receives the glory.  As always, thank you for continuing to pray and for sharing in our joys with our sweet girl.

NICU Day 117/Home Coming Day ~ (April 2nd)

What an amazing day this turned out to be, filled with grateful hearts and an incredible amount of love.  The day was incredibly bittersweet as we said "see you later" to our NICU family whom we have grown to love immensely.  No words could even begin to describe how thankful we are, not only for the care we received the past four months but also the love and friendships we now have through this journey.  I think the pictures along with the FOX 8 newscast describe that day better than I could ever communicate in words, so please enjoy these special memories captured on "film."

(The people included are not even half of the team that has taken care of her these many weeks.  We still need to go back and capture some pictures we missed with several people!! Thank you, Joy and Lori, for taking so many pictures!)

~Dianne, Noelle's nurse her last night in the NICU (Noelle loved snuggle time with her)~

~We love Dr. Tatum and are so very thankful to God for him and the role he played in Noelle's care~

~Lori, one of Noelle's awesome nurses~

~Dr. Helderman, another of Noelle's wonderful neonatologists~

~Christi & Christina: Noelle's fantastic delivery nurses~

~I asked Donna to dress Noelle in her home going outfit.  It was especially fitting since Donna was the one to dress her for the very first time!~

~All dressed and read to go and snuggling with Aunt Donna (who came in on her day off to see us leave)~

~Noelle's message for the Forsyth NICU (courtesy of Auntie Em ;-)~

~Removing Noelle's things...something I just could not bring myself to do~

~Forever bonded together (I have talked with her at least once a day since Monday!!)~

~Taking it all in~

~Amanda holds a special place in our hearts~

~Joy, one of Noelle's amazing respiratory therapists~

~Candace, another of Noelle's sweet nurses~

~I love all the memories we have with Amy, Noelle's respiratory therapist (her mother made this precious blanket for Noelle)~

~One final kiss before entering the carseat~

~Tiny feet~

~Comfy, Cozy~

~Almost ready to go!!~ 
 

~One final "see you later..."~

~Happy family~

~Home, Sweet Home~

~I think I like it here!!~

FOX 8 Home Coming Update

~Home, Sweet Home~

We will post an update of today at some point when we have some time after settling into home; but in the meantime, Fox 8 news is running a home coming update in the news tonight at 10:00.  You can watch the feed live here or it will be posted online after the story airs.  Today was an overwhelming day, a testament of God's incredible goodness in our lives.  Thank you for your continued prayers for our family.  We look forward to continuing to share with you how God works in and through this precious miracle He has granted to us.

***FOX 8 NEWS STORY may now be viewed here***

NICU Days 115 & 116 (March 31st & April 1st)

~Sanding the hutch for Noelle's clothes & baby items~

The last two days have been a bustle of activity as we prepared for Noelle's home coming scheduled for tomorrow.  Thankfully, we had obtained her crib early in the pregnancy but had taken it to a friend's {the Shaws} home to paint it and then ended up storing it there after our first ultrasound revealed initial bad news.  We moved to a new place only a few weeks before that sad day and once we had the first news report, we decided not to put together a room to which we would have to close the door for an amount of time if things went as the doctors said they would.  Things began to change only a few short weeks before Noelle was born; and then once she was here, we practically moved into the NICU and have lived there the past nearly 4 months.

~Alex helping Uncle Tom~

Needless to say, we never did get things painted or her room put together, so we spent Saturday performing prep work on the furniture pieces.  We are moving some things around in our home, painting them, and re-purposing them to work for our needs.  I look forward to the day when we can reveal the final results, but we were excited at how much we were able to accomplish yesterday.

~Sanded and ready for the next step~

After finishing the sanding, we met the oxygen care people at the hospital for our training on Noelle's oxygen support and apnea monitor.  We're hoping she will be free of these things after gaining a couple of more pounds, but we are thankful to have these items for our transition home.  Then came the fun part for which we have waited many days.

~Noelle getting set up on oxygen in the parenting room~

We had the privilege of spending the night in one of the parenting rooms with our little girl.  Ironically, we were assigned the same room in which we had stayed during the week in January when she had become extremely sick with pulmonary hypertension.  Thankfully, we will have more pleasant memories of that room as of last night since Noelle did very well through our trial run; and we are looking forward to our first night at home with her.

~Settling in for the night in the parenting room~

If all goes well, we will be home with her by late tomorrow afternoon and are filled with anticipation and excitement for this new path in our journey.  Simultaneously, we are saddened at the thought of saying "see you later" to our NICU family who has embraced us and taken such wonderful care of us these past many weeks.  We are so grateful to God for not only bringing us through this trial but for the way He has brought us through this trial and for the lifelong relationships we have established along the way.  We will miss everyone tremendously!!

~Amanda: Noelle's Admit Nurse & Discharge Nurse~

~Amanda admitting Noelle on December 8, 2011~

The plan tomorrow is for Amanda to be Noelle's nurse and walk us through the discharge process after morning rounds and the discharge orders are written.  This was special news to us as she was Noelle's admit nurse on the day she was born and has taken wonderful care of her at different points through the past nearly 4 months. What a bittersweet day it will be!!  Thank you so much for your continued prayers.  We know this new path will not be without its own bumps and hurdles, but God has promised to never leave or forsake us, and He will finish the work He has begun in us.  We look forward to continuing to share His goodness and declaring His glory!!

~We will certainly continue to update this blog.  I will probably cut back to once or twice a week {depending on what is happening} but will certainly continue to update everyone on Noelle's progress.  Thank you for praying!!~
~FOX 8 News is running a home coming story tomorrow evening at 10:00p.m.  We will post the link and pertinent information tomorrow evening before it airs~

NICU Day 84 ~ (February 29th)

Noelle had a good day today, all things considered.  She is up to her full feeding amount again and seems to be tolerating it well so far.  Today was basically a resting/growing day, and we are thankful to have an uneventful day after the events of the past couple of weeks.  A lot of people have wondered what I do all day...if I just sit by her bedside at the hospital, if I have things to keep me busy or if I get bored, and the answer is really none of the above.  Each day is different and often I plan my schedule for the day, only to have it completely changed around depending on what specifically is going on with Noelle; but in this post, I will give a little bit of an idea of what one of my days might look like.

The day mainly revolves around the pumping schedule which is every 2-3 hours, even through the night.  It's important to keep up with this so that we can provide the best nutrition possible for Noelle in order for her to grow.  Many days I am at the hospital around 9:00 or so for morning rounds.  This is when the medical team reviews Noelle's current status and goes over the care plan for the day.  A lot of things are discussed during this time, and it is the best time for us to be updated on everything that concerns her.  We have learned a lot through 3 months of rounds and developed relationships with much of her care team.  Rounds can happen anytime between 9:00 and noon, so I'm usually there for at least a few hours.  Of course the pumping schedule continues there but in between and around that, I am usually spending time with Noelle in the form of helping with her vital signs, changing her diapers, feeding her a bottle or nursing her, or holding her (usually Kanga Care ~ skin to skin).  I try to head home in the early afternoon to take care of things there such as bills, laundry, or cleaning or I run necessary errands.  Often Tom will then pick me up on his way to the hospital after work, and we will spend the evening with her, participating in many of the same things which I did in the morning.  Honestly, that is an "ideal" day, and one of those has not happened in a while.  I had planned a day like that yesterday, but then one thing after another kept happening which prevented me from going home, and so I was at the hospital all the way through the day until we left that night.  A lot of days end up like that especially when something is going on with her and they are running any kind of test.  So honestly, rarely do I get moments to just sit by her bedside and catch up on something.  It happens from time to time, and I do have things with me "just in case" but the majority of the time, I am busy in some way; and the older she has gotten the more I have been able to do with her and for her.  The nurses are really fantastic about involving us parents as much as possible and teaching us how to do so many things for her that it really makes us feel like parents even though we live life in the NICU right now.   Thank you for praying for Noelle and also for us as a family.  It's certainly trying some days as we feel like we are constantly trying to settle into a new "normal" that just will not stay consistent enough in order to really adjust; but we would not trade one moment with our precious little girl for any of that.  FOX 8 ran an update story on her tonight and will follow up again when she finally gets to come home.  Below is the link if you would like to see it.  (One correction to the story....we were originally being seen at Women's Hospital/Moses Cone for our pregnancy, but we switched our care shortly before she was born, and Noelle was born at Forsyth and has been cared for in the NICU there her entire life except for the one week she was at Baptist/Brenner's for her eye surgery.  We cannot say enough about our Forsyth family and are grateful each day that we are there).  I hope we can report another "boring" day tomorrow!!

http://myfox8.com/2012/02/29/buckley-report-baby-noelle-update/

NICU Day 57 ~ (February 2nd)

Noelle turned 8 weeks old at 11:27AM today, and it was a little ironic that we had "flashbacks" in the NICU today.  Her little "neighbors" have all switched over in the past few days...one even this afternoon.  It was amazing to witness the preparation and the process for another little one entering the NICU and be reminded of what would have been happening the morning that Noelle was born.  The team was prepped and prepared and was fully aware of what was happening upstairs, long before the baby was born and actually made it into the NICU.  The care and dedication is so evident, and we were thankful yet again for all the people that have cared for Noelle not only on the day she was born but through the past 8 weeks.  We have made true friends that we will have for life, and we are ever grateful for these new relationships and especially for how they have impacted our daughter.  We also were reminded of the "old days."  How quickly we forget things that we were still experiencing only a few short weeks ago...things like heel pricks and blood gases, PICC lines and heplocks, blood transfusions and antibiotics, PIP and PEEP (on the ventilator settings), and the list goes on and on.  Our tiny miracle now weighs 1 lb. 11 oz., is starting to take her feeds from a bottle, and is breathing on her own with some oxygen support.  Do we still have a long road to walk?  Yes.  Are we going home any time soon? No.  But by God's grace, we have come incredibly far, and we were reminded of that today.  Do the prayer requests continue?  Yes.  But for today, we are just going to say, "Thank you, Lord, and we praise You for what You have done and for what You will continue to do."

***As a reminder: if you are interested, Noelle's story is airing on our local FOX 8 news channel tonight at 10:00PM in the Bob Buckley's report.  If you are not local or do not have a television, you can watch it livestream online here: http://www.myfox8.com/news/livestreaming/ .

NICU Day 53 (January 29th)

Noelle had another really good, quiet day overall.  She gained 30 grams putting her at 700 grams total (or 1 lb. 8.7 oz.).  She is only 12 grams away from doubling her birth weight so we are hoping she reaches that and then passes it by very soon.  They do believe that she is probably experiencing quite a bit of acid reflux due to her small size.  She has been having quite a bit of desatting lately but she always brings herself right back up.  It is typical with acid reflux, so we are hoping that it gets better as she continues to grow.  Some days, she seems to sleep so deeply that it does not bother her too much, and other days it really seems to make her uncomfortable.  Today was a deep sleeping day so hopefully that means continued growth spurts.  We did not hold her today--she was on the cold side with her body temperature so we kept her in her isolette and piled on the warm blankets.  Other than those things, it was a pretty uneventful day. 

On the subject of Noelle but a slightly different note, there is a story airing on FOX 8 News (our local news station), this Thursday evening at 10:00p.m.  A lot of people have been asking about it so I will explain some of the background.  This story actually began back in October when we thought we were facing a fatal condition with Noelle.  We had contacted the NILMDTS organization ("Now I Lay Me Down to Sleep") which does volunteer photography for parents who have lost or will lose their baby.  It took us quite some time to reach the point where we would consider photographs if Noelle was stillborn, but in the end, we thought it would be the only thing we would have left to document the short time we would have with her and the only thing we might have to share with future children.  So we contacted the NILMDTS photographer for our area and were introduced to Tammy.  She met with us and learned our situation and offered to do a maternity session for us (which pictures many of you have now seen) and then to be there when Noelle was born to take photographs for us as well.  She also told us that FOX 8 had contacted her hoping to do a story on NILMDTS and to follow a couple going through the process.  The decision was up to us, and we told her we would pray about it.  Our initial reaction was "no way!!"  Things were difficult enough without cameras being in our face, but as we talked through things together and prayed about it, we had a change of heart.  It was yet another opportunity to document our journey with Noelle for our future children to see (keep in mind that at this point, we are preparing for Noelle's stillbirth) as well as to possibly be a testimony to the community.  We agreed to meet with Bob Buckley and then make our decision.  After meeting with him and Eric, his photographer, we agreed to move forward with them, understanding that we could back out at any time and after making it clear that our faith in God was preeminent in our lives, and we did not want that fact hidden from the story.  So they have been following us for quite some time and were there at the ultrasound when we first heard positive news and thought things might be changing with Noelle's outcome.  They still chose to follow the story even though the circumstances changed and the first part is now airing this week.  If you do not have a TV or if you are not local, FOX 8 has a livestream on their website, so you can watch it here (http://www.myfox8.com/news/livestreaming/) at 10:00p.m. eastern standard time on Thursday, February 2nd.  It will be shared by Bob Buckley in the "Buckley Report" sometime within the newscast.  We are constantly amazed at the relationships that continue to develop out of Noelle's situation, and we're praying that God just continues to use as as vessels for His glory.  Thank you for continuing to pray with us to that end!!