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 #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.

Cruising Speed

~Styling in my new helmet~

~Tiny Feet~

Although I would not trade one single day we have had with our sweet girl, the days we are now experiencing with her are ones that I wish I could bottle and keep forever.  Before now, the days were precious to us and yet often excruciating at the same time.  We have had many good days along our journey, even through the NICU and PICU at various times; but every gram/ounce was a struggle and ground was often lost in those days.  Even once we reached the point of consistent, daily weight gain, we still never touched the goal of a "normal" baby, gaining approximately an ounce per day; and one of the major things we discovered through this past PICU journey was that her heart was working so hard against the pulmonary hypertension, it was stealing all of her extra growing calories and using them to fight her increasing lung and heart problems.

~I just don't know how these things happen, Mom!~

Now that those issues are under control with continuing treatment in the forms of oxygen and medications, those calories can again be used for growth; and we are finally seeing the kind of weight gain we have been anticipating since she originally came home from the NICU, thus reaching "cruising speed."

~Someone has found their thumb!~

Yesterday at one of her appointments, she weighed 7lbs. 7 oz., and the newborn clothes are finally fitting well as she fills out.  Her developmental skills also seem to be increasing and changing daily, and the sweet smiles and little "words" are beginning to create a sense of true normalcy as we still navigate the multiple ramifications of her micro-preemie birth.

~Sitting up like a big girl~

A minor issue was also addressed this past week as the back of her head has been becoming increasingly more flat and creating pressure points, so she was fitted with a helmet that she will wear for the next four to six months.  It does not seem to bother her much at all, and our happy baby continues to thrive now that she is back home in her own surroundings.

~Playing with Daddy at the Dr. Appt.~

~With Grandpa Aguiar~

Along with her appointments, the past several days have been busy with various activities and also brought visits with several people, including her Grandpa Aguiar, who was excited to hold her for the first time.  We are incredibly grateful for the family and church family that God has given to us through the years and are so blessed by their love and support, especially through this past year.
Today, as we celebrated two years of marriage together, I thanked God for the man He has given to me to stand by my side as we walk through life.  These past two years have been filled with adventure, learning, trials, and much growing as God has used this covenant to change and mold us to become more like Him.  Through it all, Tom has been lovingly constant and faithful, and I have seen him grow and change by leaps and bounds and am so grateful for this man whom God has chosen to lead our family.  My heart is also undergoing a transformation, and it amazes me how God continues to reveal sin and change me through my spouse.  Noelle has added a completely new dimension to this life journey, making the past year feel as long as ten years at some points; but God has been faithful, and we are ever grateful for the manner in which He has chosen to glorify Himself through her tiny life.  We enjoyed some sweet reminiscing as we celebrated today; and as we treasure our many memories together, we look forward to how God will continue to work in and through our lives to make Himself known and glorified to this world.  Thank you for your continued prayers for our family as we seek to live out the covenant which we signed on that precious day, only two years ago:

Because God has ordained our love and prepared us for each other, we desire to become husband and wife.  Together we will be vessels for His service in accordance with His plan, so that in all areas of our life, Christ will have the preeminence.  Ever honoring God's guidance by His Spirit through His Word, we will live our lives first unto God, even above each other and all others.  Through the pressures of the present and uncertainties of the future, we promise to be faithful, to be loving, to honor and cherish, to strengthen and encourage, to help and to comfort, endeavoring by the grace of God to always reflect Christ's relationship with His bride, the church, for as long as we both shall live.