A Life Full of "Grace Outpoured"

My husband is amazing.  Not only does he endeavor to lead our family in a godly manner, he does it while also juggling a full time job, school, and the every day responsibilities of a husband and father.  I do not believe I have ever met someone who works as hard as he does all day, who then comes home and helps as much as he does.  I am truly blessed.  As he finishes his mechanical engineering degree, it often means less time with us than is ideal; but it is for a relatively short amount of time and worth the small sacrifices we must make in order for it to happen.  In one of his classes this semester, he is learning to cut various materials with different machines; and yesterday, he came home and surprised me with the above pictured one-quarter inch thick aluminum cutout.  We had discussed it a few times, and I knew he was working on the piece, but I really had little concept of how it would actually turn out.  The picture does not capture its full beauty or craftsmanship, but I was blown away.  It is gorgeous.  I am excited to select a finishing color and one day hang it in Noelle's room with some surrounding pictures, as yet another constant reminder of God's grace in her life.  We truly live a life full of "grace outpoured."

***We are still working on getting things transferred over to our own website and are excited to announce the new site and the first book {hopefully} very soon!!***

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!

Thirteen Months Old & Christmas Past

~Morning Playtime for a Thirteen Month Old Little Girl~

This past month has been gone in a blink, and I can hardly believe all that has transpired in just a few short weeks.  We celebrated the one year birthday of our precious girl, waded through end of the year doctor appointments, threw in a foot surgery (mine, just something minor), enjoyed Christmas as a family, plodded through our first cold of the season (again mine, requiring a constant mask, a host of vitamins and Mucinex, and sleeping in another room for several days), and welcomed the New Year with much anticipation for the coming year and all God has in store for us in the days ahead.

~Christmas Eve and ready for sleep!~

Today, as we marked yet another "birthday," I was reminded of how far we have come.  Noelle weighed 12lbs. / 3 oz. and had an Occupational Therapy (OT) evaluation today since her eating skills of solid foods are nowhere near even the level of her adjusted age.  Her severe prematurity, continued health issues, and acid reflux still affect much of our day to day life and schedule; and the normal milestones do not come naturally for her or for us.  Each skill that is obtained takes careful thought, much patience, and consistent effort.

~Our little family on Christmas Day 2012~

However, while days like today remind me of how far she still has to go, they are also a sweet indication of how far she has truly come.  Her therapists are often surprised at how quickly she adapts and responds once she is given the right exercises or "tools" to achieve the next step; and on my part, I am grateful for the intervention and expertise of others who understand babies with special needs like Noelle.  I have a completely new understanding and appreciation for those who work with children as well as for other mothers (and fathers) who have children with special needs of all levels, but who work to understand their child and endeavor to help them in the best ways possible. 

~Each gift was a new fascination!~

 Still, when all is said and done, it is one of the most enjoyable "tasks" I have ever undertaken, and my heart is so glad to be at home daily with our precious miracle and soaking up every new thing she encounters.

~Sweet gifts from friends we soon hope to meet face to face~

As a family, we especially enjoyed watching her do this while she experienced Christmas this year in a completely different way than last year, as she participated in opening gifts (well, playing with the paper anyway!) and fussing over each little thing she received. 

~Enjoying her new pictures from her little friends~

The true Christmas story of Christ humbling Himself and descending to earth as a baby to become the Savior of the world has become more and more precious to me through these past two Christmas seasons, and I am thankful that He continues to drive the Gospel deeper into my heart through these moments.   As we celebrated His birth with our family this Christmas, we also took special joy in both Noelle's birth and her cousin Ellie's as well.  We were so glad these two could spend this special time together, even if they were not fully aware of the event or each other!  Below is our attempt of getting a Christmas picture of them together, providing us some good laughs if not a good picture.  We continue to thank God for each precious day with our miracle and look forward to celebrating more Christmas seasons just as special as this one.

~"Ellie, won't you take a picture with me?"~

~"Let's stand up and see who is bigger..."~

~"Well, at least I'm still older..."~

"Where are you going, Ellie?"

~"I'll just play with my shoes til you come back.."~

~"These are so pretty and fun!"~

~"Whoa now!  Glad you're back, but where did my shoe go?"~

~"Hey, sit still for just a minute so I can get my shoe"~

~"Oh look left..."

"Oh wait, go right..."

~"Now they want us to look up?!!"~

~"Merry Christmas, everyone.  This is the best you're gonna get!"

 Stay tuned for some exciting changes and announcements in the next couple of weeks that we are really looking forward to sharing with you....

Happy New Year!!!

While in the midst of catching up on posts, we could not miss out on wishing you a Happy New Year today!  We are incredibly grateful to God for all that He has done for us through this past year as grace has truly been outpoured on us in ways I never dreamed imaginable.  His ways are truly better than ours, and we are so thankful to see His demonstration of grace in our lives.  This is a time when I cannot help but look back and remember what we were doing only a short twelve months ago.  On this day last year, we experienced a fairly good NICU day in the midst of what would be some of the most difficult and life threatening days we would ever experience with Noelle while in the NICU.  Each day was a long and tedious struggle through those first weeks, but the weeks surrounding Christmas and the early New Year were especially trying; and God both tested and strengthened our faith during those heart wrenching moments of hanging between life and death with our precious girl.  Today, while life is a far cry from those days, it still feels as if we live only steps from the NICU; and I still find myself going through a type of withdrawal, remembering incredibly hard and yet precious times spent in that scary and yet wonderful place.  It was scary because of the situation.  It was wonderful because of the people.  So as we wish every one of you a very happy new year, we again say a special thank you to our dear FMC NICU family who has made it possible for us to take the above family picture today.  God gave us an extra special blessing in you. 

HAPPY NEW YEAR!!!

Da-Da

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

Drum Roll, Please....

Since returning from Thanksgiving, it has been so enjoyable to feel as if we are truly settling into this lock down period.  No appointments were scheduled for several days in a row; and while our lives seemed no less busy, it was nice to keep our little girl at home and attempt to create a consistent standard of normal around here.  Well, it was fun to try anyway!  Noelle, as social as she is, seems to enjoy being in "her space" and not being dragged out of the house multiple times a week, and I am glad to see that her personality does not seem to be hindered in any way as we keep her from people during this sick season.  Thankfully, her appointments have begun to space further apart as she continues to improve in various different areas of health and does not need to be seen as often, but because so many specialists follow her, it is impossible to avoid them altogether through this entire lock down period.  Since her early NICU days, we were cautioned that she would most likely need different forms of therapy upon discharge.  Premature babies often struggle with gross and fine motor skills, speech, and various other types of developmental milestones since they entered the world in such a traumatic way and spent so much time in an unnatural environment as their bodies matured outside the womb to a stable status.  We have been blessed that Noelle has not struggled in several areas that we expected, but she was not able to bypass them all; so when we were told it was time for her to begin physical therapy, I was not surprised.  She had an initial appointment at a rehab center {which put my heart in my throat from all the people and germs present!}; but after that first evaluation, we were told she qualified to have in-home therapy sessions, which we began nearly two weeks ago.  I must admit that I was overwhelmed at the end of the first session in our home, but it was from an encouraging standpoint.  For while there were many things wrong, I was being given the tools to help Noelle and hopefully fix the problems without seeking extreme intervention.  Already, I have been very excited to see improvement in several areas, just in a matter of days.  Things that she has been trying to do for weeks, such as sitting on her own, are all of a sudden beginning to become reality.  It has taken a change in the way we act and think {for example, we now must hold her in a different way than what is "normal" or comfortable, and she must wear specially formed inserts in her shoes}, but these little actions add up through the day and result in progress gained, which is very encouraging to see.  It means that we should be able to avoid things like custom made shoes for her currently turned out feet or braces to help her walk.  We have been more than willing to consider any of these things, but we are also grateful to be learning how to help Noelle reach new milestones without taking extreme measures. 

However, at one of her appointments this past Monday, we discovered that there is one "therapy" we will not be avoiding; and that would be...{drum roll, please}...

~Getting Fitted for New Glasses~

... a set of tiny glasses. 

Although she is doing quite well and compensating for her inability {considering her ROP issues and previous surgery,},Noelle still seems to be nearsighted and allows one eye to move out of sync with the other when she is tired or distracted.  It is nothing serious {especially since we were originally facing the possibility of her going blind}, but we do want to act on it as soon as possible since her eyesight affects areas of her brain development as she is learning images and attaching recognition to them in the state which she currently sees them.  We would prefer that she accurately be able to view things and thus send the correct identification messages to her brain.  On the advice of our opthamologist, we are selecting frames that are practical and comfortable for her little face and will save the adorable frames for a later time {although this mommy is still exploring possibilities of making these just a little cuter).  Her glasses will look a little differently than what you see in the photo since these are simply for fitting purposes; but in another four to six weeks, tiny spectacles will begin to adorn this sweet face during all waking moments.  I think that she just might like them...

A Sweet Celebration

Many have asked for birthday pictures; and while we did not have a large party, I realized that we have a little girl who is well loved and hardly forgotten, party or not.  Over the last couple of weeks, gifts and cards came through the mail, through friends at work and church, and through family.  Combining all of that with the plethora of facebook comments and email wishes for a Happy Birthday still made for quite the event in our household on Saturday evening.  

Although she cannot eat cake (especially since she is still barely taking one teaspoon of stage one baby food each day), we could not forgo the traditional birthday pictures and so made cupcakes for the occasion.

She was fascinated with the flickering flame as Tom lit her candle; but thankfully, she did not try to touch it as we snapped pictures.

We did give her a little taste of the frosting, but it was NOT a hit (which gives great hope to this momma who would much prefer to have a pie-loving buddy in this house, since Daddy is all.about.cake!).  

Opening gifts was a bit hilarious since we had to wipe most things down before she could touch them, but she was patient and never knew the difference.  She received so many thoughtful things (and we tried to capture pictures of everything, although some of them are far too fuzzy to post since she was enjoying them so much!).... 

A stuffed dog from Grandpa & Grandma Wagner (the only clear picture of it we could capture)...

A printed picture and thoughtful poem written for her by Lorraine Woodle...

Lots of books from Aunt Donna...

The cutest ever socks and a warm fuzzy sleeper from Grandpa & Grandma Aguiar...

Special wool socks made in Colorado from Uncle Denny & Aunt Susan...

A beautiful, soft coat & matching headband from PaPa & MaMa Boyer...

 A large teddy bear from Helzberger's (who sent it for her after my Mom shopped there for this occasion)...

(Loves ribbon....)

 A keepsake charm bracelet from Grandma McDowell to be able to add charms through the years...

 A nativity set from Grandma McDowell (notice that she is sitting up all by herself...another MILESTONE reached!!!)....

And finally, Tom's thoughtful co-workers collaborated together to get her a few special things to mark this momentous occasion.  The first gift has already generated much discussion in this household as to how it will be handled (Daddy especially is very particular on how, when, and where this will be used, for which Mommy is VERY grateful), but she was quite taken with it and would have kept playing with it until we took her to bed!

(Aunt Kayla, I know this will make you proud!!)...

...and one of the other gifts caused smiles to cross all of our faces.  Perhaps, this product will just do the trick for us through this next year.  Thank you, Honda Flight Test Team!!

So although we were not physically surrounded with people on this joyous occasion, we still felt and experienced the love and encouragement of so many through your cards, gifts, phone calls, texts, and comments.  It was a celebration, regardless of the circumstances, and we truly appreciate you joining with us.  We thank God for this first year with Noelle; and while it has been incredibly difficult through many days, we would not trade one moment of the time He has allowed us with her.  We look forward to this next year and watching Him continue to grow her and use her for His glory.