Thursday, September 27, 2012

"For This Child I Prayed..."


While many have encouraged a book writing project, we have decided that the first endeavor will be a compilation effort for Noelle's first birthday and would like to request participation from anyone willing to take part.  Since she will have no memories of how her life began, it would be wonderful for her to have something which she can read someday, which would reveal to her the many who have prayed for her through this journey.  Our desire is for her to clearly see God's hand upon her life in a very tangible way, and so we would like to collect these memories while they are fresh upon the minds of many.  The book will be named, For This Child I Prayed...., and if you would like to take part, we will be compiling the following submissions:

~Specific prayers or Scripture you prayed for Noelle
~Special memories of Noelle
~Sweet stories (there are several we have already heard from children, for example)
~Scripture or encouraging words

Submissions will be collected through Thanksgiving, and then we will compile them into a book to commemorate her first year of life outside the womb.  If you would like to participate, you may contact us in the following ways:

~Email: graceoutpoured@gmail.com
~Our Facebook Page: {Grace Outpoured} (Leave a comment with a designation of "Birthday Book" or "For This Child....")
~Grace Outpoured Blog: comments may always be left on our posts, but if you leave it on any other post than this one, please designate it the same as you would a comment on the Facebook page.

We thank you in advance for your participation, if you so choose.  More than that, we are ever grateful for each one of you who have invested in the life of our family, especially through prayer.  We hope and pray that this will be a tangible testimony of God's grace to Noelle.

{Please note that all submissions will become the property of Grace Outpoured to be used as desired for public or private publication.}

Connect With Us...


Grace Outpoured has launched a new Facebook page to continue sharing updates on Noelle as well as some possible opportunities which God seems to be developing in the coming months {the first one to be posted later today!}.  Please visit Facebook and "Like" our page {Grace Outpoured} to receive updates and notices via Facebook.  As we settle into "lock down" for the fall and winter seasons, we look forward to connecting with many of you and continuing to share how God is working in our lives.  Thank you for your support!!

Wednesday, September 26, 2012

The Day Our Lives Forever Changed ~ {One Year Ago...}



September 26, 2011 was a day we had anticipated for weeks as it was our first ultrasound, and we hoped to find out if we were having a little boy or little girl.  We had names chosen for both genders {even though we were very suspicious that we were having a baby girl} and were hoping to start envisioning nursery colors and ideas by the end of the morning.  Our appointment was scheduled early; and although the check-in process always seemed to take some time, the ultrasound itself went quite quickly.  We enjoyed watching our tiny baby on the screen while the sonographer took several pictures, confirmed our suspicions that we were having a girl, and then left the room for a while as she wanted me to walk and move around in an attempt to get Noelle into a different position so she could get the other pictures she needed.  In retrospect, I believe she was gone for such a long time consulting with the doctor on her findings; but we were oblivious to any hint of concern, being completely engrossed in talking and dreaming about our little girl.  Upon the sonographer's return, we discovered that Noelle had not budged at all, so we were given a few printed pictures and shown to the waiting room until we could meet with the doctor and discuss the results.  I remember being disappointed that I was given only a few pictures {since I had friends with refrigerators full of ultrasound photos} but figured it was due to Noelle's position and did not think much of it beyond that. After some time, which we spent texting family and friends our exciting news, we were taken to the doctor's office to discuss our baby's progress.  The next moments would bring heartbreaking news and change the course of our lives forever as the doctor informed us that they were seeing multiple "soft markers" in Noelle's measurements along with some other concerning signs, and they needed to schedule us for a high resolution ultrasound with a high risk specialist to get a more clear picture of exactly what was happening in our pregnancy.  The doctor gave us a lot of information but kept things pretty vague overall, since they honestly had no idea what we were facing.  The one thing they basically {although not concretely} ruled out was Down Syndrome, leaving us with more unanswered questions than we ever thought possible.
We left the office with the assurance that someone would call us shortly to schedule the next appointment and instructions to stay off the internet for information as much as possible.  As we sat in the car for a moment, I think the shock began to settle into our minds; and Tom took my hand and began to pray, and our tears began to flow.  We loved this little baby, Noelle Christine, with all of our hearts and were so grieved that she might face major challenges in her life.  At the time, we did not consider a fatal condition, although it had been mentioned as a possibility.  We drove away, and I began letting close family and friends know the uncertain news and asking them to pray.  Almost immediately, my best friend, Sue Shaw, contacted me back and asked if we wanted to have lunch together, understanding if we wanted some time alone together but also wanting to be there for us if we wanted to talk to someone.  She was nearly nine months pregnant with her second little boy, and we were all looking forward to the impending arrival of this little one.  Tom and I decided it would be nice to see her and Alex {her first little boy}, and even though she was being monitored for some early signs of Preeclampsia that she was experiencing, she dropped everything and came to meet us for lunch.  It was a sweet time of fellowship and encouragement as she just listened to us explain what we had been told {which was not much at the time} and then talked through a little bit of what we were thinking and feeling.  Tom and I were processing things differently, but ultimately we knew that God was in control of the situation, regardless of how things felt in the moment.  Sue offered to let our church elders know the situation, and I gladly and thankfully agreed {since contrary to what the blog now suggests, I am actually a very private person who prefers to share one-on-one and have had to learn to become more open on a much larger scale, due to our situation this past year}.  As we parted ways for the day, she assured us of her love and prayers and made sure we knew that she and Aaron {her husband} were available to us any time of the day or night that we might need them for anything.  As I look back on that day, one year ago, the memories are so vivid that it truly seems like it happened only this morning.  However, today is different because my baby girl is sleeping in her cradle, and a blog full of posts exists with evidence of a hard fought journey since that day.  I am incredibly grateful as I look at the blessing which I hold in my arms today, but I am also reminded of the blessing of my dear friend, Sue.  She was a great friend before all of this began; but since that time, she has proved her steadfastness, her faithfulness, her love, and so much more as she has sought to demonstrate Christ-likeness to us in a multitude of ways.  She and Aaron have never failed to be there for any need we have expressed {and even many we have not voiced}; and while there are many in our church body who have also faithfully and lovingly been there for many of our needs, Sue and Aaron are always the first ones we call.  Words could never express our thankfulness to God for bringing them into our lives, and we are ever grateful to Him that we are now looking back on a year full of much learning and drawing closer to Him.  His grace has truly been sufficient for it all.
~One Year Later...with Our "Huge" 9lb. 4oz. Little Girl~


Monday, September 17, 2012

Father's Day ~ {One Year Ago...}





~Best Father/Daughter Picture we could get that day....still sweet~
~Open eyes will not happen!~
~Reaction to the breeze (just a face, no crying)~
This is a post I began the day after Father's Day, but then circumstances placed us back in the hospital; and unfortunately this day was quickly relegated to the back of our minds.  However, I have always wanted to come back and finish it since it was a special time for us, especially considering the events of the past year.  It was Father's Day weekend 2011 when we discovered that we were pregnant with our very first child; and since we had been hoping and praying for a baby for several months, we were ecstatic when the test read positive.  Little did we know what the weeks ahead would bring, but we spent that first Father's Day together in much anticipation and joy as we dreamed of what life would hold with a new member in our family.  While celebrating Father's Day this year, a myriad of memories and emotions overwhelmed us, remembering where we were one year ago as well as everything through which we had come since that time period.  God's amazing grace is so evident in a multitude of ways as we look at Noelle, but I also see it as I look at Tom.  His love for children has always impressed me, but watching him through the pregnancy and then since the moment Noelle was born, has made me love him so much more than I ever thought possible.  His tender, gentle care for our little girl coupled with his protective and yet ever fun spirit is a joy to watch, and I thank God for the husband he gave to me who now has assumed the role of "Daddy."  He does it very well and works so hard to not only provide for us but also spend quality time with us in an effort to lead our family in a godly manner.  Father's Day will forever hold an extra special place in our hearts for the memory of learning we were pregnant but also because there were many days when we expected it to turn into a day of grief as we were told that Noelle would not live.  Instead, it is still a day of joy, anticipation, and great thankfulness to God for all He has done and is continuing to do in our lives. 

~This set of pictures is from Father's Day Weekend 2012~
~Always has eyes for Daddy~

~She absolutely adores him!~


 ~This set of pictures is from this past weekend....Noelle & Daddy together~

~Smiles for Daddy~

~New Toy: Chins!!~

~Fascinated by Daddy~

~A Favorite Pastime Together~

Friday, September 14, 2012

The Beginning of Mobility

~I am very focused sometimes!!~
Someone once asked me if I had a baby book in which I was logging Noelle's milestones; and it took me aback since not only did I not have such a book, but it had not even crossed my mind amidst everything else we were experiencing at the time.  But then I remembered that I did have something that documented and logged many of Noelle's milestones and so much more...this blog.  Something that I resisted for so long has now assumed many tasks for me in the forms of  a baby book, a medical history record, my memory, and so much more; and I truly appreciate the many who encouraged me to pursue this avenue of communication.  Today, this blog becomes a baby book yet again to record the first time that Noelle rolled over by herself {of course I did not capture it on camera since the little stinker waited to do it once my back was turned, but we will get it next time!}.  Honestly, another reason I have never picked up a typical baby book is because it usually has prompts for all the milestones in the months that they are supposed to occur in your baby's life.  Since Noelle does not and will not ever fall into those categories, I truly do not even keep up with the "normal" things she is supposed to be doing at her age.  It is too stressful, and I do not want to put pressure on her {or myself} for her to do things which she is not yet able or ready to do {especially since even "normal" babies have a wide range of timing for milestones}.  I have a basic idea of where she should be since we are asked the milestone questions at various appointments, but we just let her do things in her own time; and so far she is not that far off schedule, considering her adjusted age {which is calculated by her original due date}.  I am now scrambling to get the carpet cleaned and insure our home is ready for a mobile baby, since I think it will come faster than for what I am ready; but we are excited for this new phase with Noelle, and each passing day grows sweeter and sweeter with her.  I will post "rolling over" pictures whenever we finally capture them, but here are a few other pictures to view in the meantime {especially since she is beginning the transition to 3 month clothes and gaining a new wardrobe in the process!}.  Thank you for sharing in our joy with us!!

~I love my Daddy!!!~

~He is the most fascinating person in the world to me!!~

~Daddy feeding me avocados for the first time~
~These are yummy!!~







~I'm so big, I can almost fit my entire fist in my mouth!!~

~So the doctor said I could wear my helmet without the strap....haha!!~

Wednesday, September 12, 2012

The Bear in the Bathtub

~The Happy Bear Cub After a Nap~

A little she-bear cub has come to reside at the Aguiar residence lately.  I think she ate the little bird that used to coo so sweetly and softly, although I still hear that bird faintly every once in a great while.  This little cub growls all.the.time, but only when happy or extremely excited about something or just carrying on a simple conversation.  Unhappiness or urgent opinions are still expressed with fussing noises.  The cub is cute, so we have decided to keep her...as long as she lets the little bird come out and sing once in a while.  She made quite the mess this morning and needed a bath, so this is our happy little cub enjoying one of her favorite moments of the day.  Enjoy!!


Saturday, September 8, 2012

Nine Months Old


~Sweet, 9 Month Old Baby Girl~
~Blurry, but My Favorite: Love these Smiles!!~
I can hardly believe this little girl is nine months old today!  There were many days when I was not sure we would ever make it this far; but by God's grace, we are enjoying this precious gift who is growing like a little weed.  She still did not quite average 1lb./month as she weighed 8lbs. 12oz. this week; but she is close, and everyone is quite pleased with her growth.  The last few weeks have been very full for us, not only with multiple doctor appointments but also with the weighty results and projected treatment of the sleep apnea and waiting on the doctors to consult and develop a plan.  We did not share many details earlier since we needed to process the news ourselves, and we also did not want to cause undue alarm if the proposed treatment was dismissed by the rest of her medical team.  However, it was and is still being seriously considered, and so we are facing the possibility of a tracheotomy to solve the sleep apnea issues.  This came as a complete shock to us since Noelle has been doing so well, and her doctors almost did not proceed with the sleep study originally.  I truly thought it would confirm some reflux issues but nothing more serious than that, and it took us a few days to wrap our heads around the information, once the ENT highly recommended it almost two weeks ago.  Thankfully, he still had to consult with Noelle's cardiologist and pulmonologist who were greatly concerned but not as extremely urgent about it since they had seen progress with her since her last hospital stay.  The last ten days were filled with much discussion among them, and we finally learned the new plan at Noelle's pulmonology appointment on Thursday.
~Snuggling with Gigi on the Porch Swing~
The medical team has decided to repeat the sleep study on October 17th; but if the results are the same, then they will proceed with the tracheotomy {or tracheostomy~the term is interchangeable}.  I will admit that I initially struggled with this issue more than I ever expected, especially considering how many life and death situations we have already come through in the past several months with Noelle.  However, after much wrestling with it, I realized that I had become quite attached to our new "normal" life, especially since I felt as if we could "see the light at the end of the tunnel" and hoped to be completely "normal" again by next summer {i.e.~oxygen free, fewer doctor appointments, fewer medications, fewer restrictions, etc...}.  The tracheotomy completely threatened {well, it totally dashed} any hope of that normality returning for many months...years even, since the ENT specialist had prepared us to have it inserted for a minimum of two to three years.  It also meant another very long hospital stay since we would be admitted for a minimum of one month for the surgery and the intense training we would receive to care for Noelle in her new condition.  The other ramifications are incredibly numerous for day to day life as well as long term development and plans, and they become overwhelming when we dwell on them; but in the end, God revealed my sin to me and reminded me once again that it is His plan that is is best for Noelle and our family, and I am not to become attached to my own dreams and plans.  If we truly desire for Him to be glorified, then we must live that in our daily walk, regardless of the painful circumstances we endure.  Now, I can truly say that we are at peace with whatever the results turn out to be next month.
~Grandma is my new Snuggle Buddy!!~
This does not mean that we do not have fears that must be surrendered or tears that easily flow, but it does mean that we know that the same God who gave life and breath to Noelle and brought her to today is also the same God who will sustain us through this next chapter, however it comes to be written.  In the meantime, we are doing everything humanly possible to help the situation in the form of controlling her reflux.  Noelle's medications has been nearly doubled {due to her weight gain}, and we are using and performing every other reflux aid we can possibly do.  We know that reflux can reflect as apnea episodes, so we are trying to eliminate these as much as possible so that we can get as much of an accurate reading as possible in a few weeks.  Thankfully, my mom has recently moved here and is a tremendous help during this time, especially as we work through these issues.  We truly appreciate your prayers in this matter.  Selfishly, we pray that it will not come to this while ultimately desiring that God's will be done in both Noelle's little life and our family's life as a whole.  We will certainly continue to update but will not have any further information on this issue until the end of October.  In the meantime, we continue to enjoy this sweet girl and her precious smiles each day as she grows and continues to change right before our eyes.  Happy Nine Month Birthday, Noelle!!!



~~~More pictures of life with Noelle the past few weeks~~~
~I am reaching for toys now!!~
~Sweet Snuggles with Grandma~
~What was THAT noise?!!~
~Visiting with Aunt Donna at the NICU~
~A Nap on Gigi's Porch Swing~
~What a life!!~