Exciting Changes & Announcements

Since the ending comment on my last post generated even more anticipation and questions than I imagined, I decided to go ahead and share some of that to which we were alluding by that statement.

~www.graceoutpoured.blogspot.com~

Over the past thirteen months, this blog has changed platforms and faces a few times and morphed into something far bigger than I ever imagined possible.  Most of that has been due to Noelle's journey and all that she has experienced during that time, but the blog has also begun to serve another purpose as I have had the opportunity to connect with people from various corners of the world and build relationships that I was not even aware could be there.  The blogging world is a unique community of people from all walks of life that becomes even smaller when you settle into your niche.  However, our niche is different than many others since we never sought this particular experience with Noelle; but instead, it was sovereignly place in our lives by a loving God who desired to draw us closer to Himself through trial.  As Noelle has grown and become stronger, this blog has changed with her and reflected her milestones.  And while there is still a journey to be walked that is different from the norm, the blog has consequently taken a different tone than days past of roller coaster rides and heartbreaking moments.  As we look ahead and wonder what else the future might hold, some decisions have been made concerning the direction we should take, and we are excited to say that we will soon be transitioning the blog to our very own platform/website to that of www.graceoutpoured.com and dropping the ".blogspot" part of this blog.  In some ways, it is probably more exciting for me than for you, since much of those changes are behind the scenes; but you will soon be directed to this new site and {I hope} enjoy the new look and content that will be made available to you.  In many ways, I still am unsure as to where God is leading this venture; but since He has led in every step thus far, I know He will continue to do so even as we hope and pray that days such as those spent in the PICU continue to become more and more distant.  A specific launch date has not yet been set since there is still much to accomplish {and this mommy cannot guarantee specific time devoted to this subject}, but we will certainly keep you posted and let you know as the date approaches....soon.

~Happy Girl in the last few months of her helmet {we hope!}~

As far as announcements, we had originally hoped to be telling you today that Noelle had completed the time in her helmet; but after her appointment yesterday, that is not to be so.  I cannot say that I am disappointed because I truly am not, although I would have been pretty excited to say that it was true.  We had expected it based on her last appointment, but because her fontanelle is still open and her head still has the potential to change, her medical personnel feel it best to continue with this form of therapy for at least two more months.  Since she wears it now only when putting pressure on the back of her head, the actual time she spends in it each day has become less and less; and I now have to make a conscious effort to remind myself to put it on her head during those moments.  It has evolved into yet another normality in our life, becoming a "nuisance" only when a certain little person realizes that she now has the ability and strength to remove it.  I think she notices it more now that she wears it less, than when she wore it nearly 24/7!  So hopefully this particular announcement will become official in another two months.

~Formatting & Editing For This Child I Prayed~

Our another announcement has been mentioned previously, but it is becoming more and more of a reality as I format and edit Noelle's birthday book for distribution.  I have had mixed feelings in the preparation of this book for public reading since it is so very very personal to Noelle and our family; and yet I have also been humbled and encouraged and have prayed and cried as I read through letters and notes from so many who have loved and prayed for our baby girl.  Many have asked about obtaining a copy, and we are answering that request with this book, an expansion of what we created for Noelle on her special day.  This book will include not only the submissions for the birthday book but also select NICU posts, comments left for us during those difficult days, and other special posts that relate to the overall subject, For This Child I Prayed.  Again, we do not yet have a specific launch date as I am still in the formatting and editing process while also wading through the many details of publishing a book such as this; but we do hope to make this available to you shortly after the website launch and are planning both an e-book and a printed version for whichever type you prefer. 

So amidst the crazy schedules and life happenings in the Aguiar household, these are the changes and announcements that have been brewing beneath the surface.  We are excited to share them with you and look forward to the coming weeks as things actually begin to "fall" into place.  Thank you for sharing in the excitement with us!

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!!***

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!!***

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!!***

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!!***

Giving Thanks Challenge ~ {Day #7}

Thanksgiving Challenge ~ Day #7

Topic: Noelle
Title: Soft Tufts of Hair

{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...}

This first week of the Thanksgiving challenge has been an encouragement to my heart, especially in the midst of a divided and hurting world around us.  So much has happened on a large scale this week as our country became the focus of the entire globe when tragedy struck through Hurricane Sandy and then again as our nation selected a leader for the next four years.   

~So Much Hair!~

We have been bombarded from all sides, through every avenue of social media; and although I am thankful to be informed, to have the ability to reach out and help in a small way, or to cast my vote and take a stand {regardless of the outcome}, I am especially grateful at times to escape from the chaos into my little corner of this world, my home, with the peace of Christ satisfying my heart and a sweet little bundle of grace filling my arms.  She is such a constant, physical evidence of God's grace and goodness to me; and I am glad to have the persistent reminder, especially when all is not right in the world around me.  As we cuddled this morning during her first bottle of the day, the sun streamed through the window, highlighting her soft, downy hair; and I suddenly realized where she is sending all of these calories I have been cramming into her!  She is growing out her hair, thicker and faster than I have ever before seen!  My favorite are the little new strands that stick straight up, not being long enough to lay flat just yet, and seen only when the light bounces and catches them at just the right angle.  One moment we are certain it is dark in hue; and then the light changes, revealing what appears to be a pretty, strawberry blonde.  So the final color is yet to be determined, but we are enjoying this phase of downy soft tufts of hair appearing almost daily across her little head.  In the midst of so much turmoil and struggle, I was thankful to take pleasure in something so simple and soft as brand new hair on the head of a sweet, growing baby.

~Smiles for Mommy~

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 just over a 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!!***

Giving Thanks Challenge ~ {Day #6}

Thanksgiving Challenge ~ Day #6

Topic: Noelle
Title: Lock Down

{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...}

We just recently completed our first month of lock down {explained here}; and I must say that it was not what I thought it might be.  I pictured long days and dedicated play time.  I imagined lots of extra snuggles and reading books together.  Of course a spotless home, a plethora of baking and cooking, time to write, and so much more was on the list as well.  Some of these things have happened, but usually not the way I dreamed or planned.  Cooking dinner is a regular occurrence {and a mostly enjoyable one after months in the hospital and weeks of "quick" cooking in between doctor appointments}; sweet snuggles happen often, although I can never have enough of those; and we certainly have more play time than ever before.  But in the aftermath of Hurricane Sandy and seeing the tragedy that so many have experienced, I am reminded even more to be grateful for this lock down period.  Many in that situation would love to trade places with me, to be required to stay in their home, to have the ability to cook dinner once again for their family, to wash loads of laundry, to scrub the toilet, to do the "mundane."  It will happen again.  They will move on and rebuild and create a new normal, but their lives will never be the same, both for bad and good; and the road to that new normal will be long and hard.  So today, as I am confined to my home with my sweet miracle baby, I am grateful for this mandatory period in our lives and the "mundane" that I so often take for granted and sometimes, ashamedly, even complain. I am thankful for the help I have received in the form of my mom picking up groceries and running errands.  I am excited my husband has a good job and is able to be in class, finishing his degree and endeavoring to provide well for us.  I am glad to still be allowed to vote via an absentee ballot.  And I am especially enjoying my opportunity to hold a precious little girl and have an "excuse" to be with her all day long.  Life could not be sweeter.

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 are less than two weeks 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!!***

Giving Thanks Challenge ~ {Day #4}

Thanksgiving Challenge ~ Day #4

Topic: Noelle
Title: Noelle & Her Daddy

{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...}

~Daddy's Girl~

While I am quite certain that my little daughter loves me {as much as is possible for a ten month old baby}, there is a certain person in this household whom she absolutely adores.  She is a "Daddy's Girl" through and through, and I would not have it any other way.  Their connection began before she was ever born, his voice generating most of her kicking movements throughout the pregnancy.  Watching their relationship continue to develop has been a joy for me; and even though he gets far less time with her during the week than I do, she never ceases to be amazed and awed by him.  It is how it should be with little girls and their daddies, and I hope she always has a special connection with him.  He is an incredible daddy, and I thank God for him and the father that he is to our little girl.  I could continue writing; but tonight, I think the pictures say it all...we are truly blessed.

~Daddy showing me how to find all the hidden secrets in my book!~

~Blurry, but the look of laughter is still captured~

***Do not forget there are less than two weeks 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!!***

Stopping to Snuggle

This is the first week that I truly feel as if we are on lock down.  The past few weeks have still been full with a couple of doctor appointments, the sleep study, and Tom having his wisdom teeth removed {which, if I were a "mean" wife, would have been plastered all over the internet in video form...suffice it to say that Tom under anesthesia is quite entertaining!}.  My mom also started her new jobs, so we have all been adjusting to the various schedules that occur around here.  I have long been looking forward to this week and hoping to get much accomplished around the house.  Still, many of the things I plan to do never seem to get done during the day, or they happen on a day which I did not expect.  I am really on no one's schedule but my own {well, Noelle's, that is}, but some days it seems to be a great accomplishment just to grab a shower or make dinner.  I know this is normal for moms, and I truly love falling into that category now; but some days I find myself putting Noelle in her swing or her bumbo seat or in her cradle for a nap, just so I can get something done.  There is nothing wrong with that; in fact, she needs times like these to learn to play by herself or fall asleep on her own {which she does quite well, thanks to the NICU}.  But today, it was time to stop.  Time to stop and just be with her.  It happened in the form of grabbing the camera and talking and playing with her as I tried to capture some images; it also meant holding and snuggling her as she fell asleep for her morning nap.  These are moments and days I will never get back, and I want to capture them before they are gone.  Because stopping to create these memories will someday be one of the sweetest treasures I hold.

{P.S. We will keep reminding about the book project through November 15th.  We are so thankful for the entries we have received but would love to hear from more of you, if you are able to contribute.  We really appreciate the time and love so many have you have spent on this project!  Keep them coming!!}

~Captured Moments from Today~ 

We tried on a special outfit from Aunt Sara...

Then we pulled out the headband from Grandpa & Grandma Aguiar and caught a few more...