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. 

Happy First Birthday, Noelle!!!

 

Today, at 11:27a.m., Noelle turned one year old and marked one of the sweetest milestones in her life thus far.  Knowing that there were many days and weeks in which we never even dreamed of this day, makes reaching it that much more special to us.

So how do we celebrate such an incredible event in her life?  Probably not as you would expect, since many one year old babies have quite the party.  But since we are in the midst of lock down season and still ever mindful of her health, that could not be an option for us.  Instead, it is a day full of memories, thankfulness, and precious family time together.  So rather than a party with friends and presents, we are spending the day delivering a sweet treat and a Happy Birthday card to our NICU family (sans Noelle due to lock down), for this celebration is as much theirs as it is ours.  The day also still holds a few presents and cupcakes (although for pictures only and not to be eaten by the little person who still has no teeth) as we enjoy this special day as a family, remembering how different things were one year ago at this time.

While preparing this slideshow of her first year and formatting the entries for her birthday book (which so many of you lovingly submitted), we have been overwhelmed yet again by God's goodness to us through these many months.  Words just cannot express our true emotions today, and these feelings are often demonstrated with flowing tears of joy.  So with very thankful hearts to a God who has been gracious beyond measure, we celebrate this first birthday with our precious miracle.  Happy Birthday, sweet Noelle!!!

~Birthday Outfit made with love by Auntie Em~

In celebration with us, please enjoy the slideshow and birthday book links below...

Noelle's First Year from Grace Outpoured on Vimeo.
A photographic journal of Noelle's first year of her miracle life.
Music Credit: "Precious Life" from the "Hidden in My Heart" collection by Breakaway Music

For a preview of Noelle's birthday book, you may click and view here.

Giving Thanks Challenge ~ {Day #30}

Thanksgiving Challenge ~ Day #30

Topic: Noelle
Title: You

{If you are new to this challenge, you can catch up on the details here }

On the final day of this Thanksgiving challenge, I cannot help but be thankful for you.  Yes, you, the one reading this post.   This experience has opened up a completely new world to me ~ a world I thought I did not need.  The process into blogging this journey has not been without great thought, but it has been so much more rewarding than I ever dreamed possible.  So many of you have cried with us, prayed earnestly for us, laughed with us, and shared in as much of our experience as you possibly could do.  You have written kind notes and comments, sent thoughtful gifts for our baby girl, provided gift cards and funds to supply food and gas needs while in the hospital, and you have encouraged us most by your unending, faithful prayers.  I never would have imagined how one, tiny baby could touch so many lives; and we are humbled to watch God using her journey to draw others to Himself.  As we close this Thanksgiving challenge {although not in our hearts}, the overflow of this month seems to be spilling over and culminating as we turn to celebrate Noelle's first birthday in just over one week.  My heart is so full as I work on some special projects for this momentous occasion; and as I look at my precious daughter these days, tears often fill my eyes as my lips whisper, "thank you, God."  I am grateful that He knows my heart, and my simple words are enough.  The postings this week will be rare {if any} as we prepare a special project to launch on the blog on her birthday, December 8th.  As a prelude to that surprise, I am sharing a look back at the early days, the very beginning of this journey.  Thank you for walking this journey with us.

Noelle ~ A Look Back from Jill Aguiar on Vimeo.

A look back at Noelle's introduction to life and her first four months in the NICU.

Music credit is "Wonderfully Made" from the "Hidden in My Heart" collection by Breakaway Music.

Giving Thanks Challenge ~ {Day #29}

Thanksgiving Challenge ~ Day #29

Topic: Noelle
Title: Reflux

{If you are new to this challenge, you can catch up on the details here }

As we approach the end of this week and the end of this particular challenge, I look back and truly see a work of God in my heart.  I must admit that most of the subject items each day have been easy things for which to be thankful.  There have been a few sprinkled through the month that have been challenges, but even those do not seem so difficult in light of the worst things we have experienced over the course of the previous fifteen months.  But as Noelle had another reflux flare-up this past week, I realized this was one particular issue for which I had not ever chosen to be thankful.  In fact, I have despised it.  The hiccups, coughing, and throwing up copious amounts of her feedings have frustrated and discouraged me, leaving me in tears on more than one occasion.  In everything give thanks.  The command from I Thessalonians pricks my conscience and echoes through my mind like the resounding notes of gently plucked harp strings.  The context is not lost on me as I ponder the words, for it is is preceded by the directives to rejoice evermore and pray without ceasing and followed with the reminder that this is God's will in Christ Jesus.  I cannot give thanks in my own strength; it must come from Him.  Many sermons on this passage have met my ears through the years, but I need yet another reminder of the true meaning behind the words.  Upon some closer examination, the text becomes more convicting as the individual words come into focus and then meld with their surrounding context.  Consulting of definitions and commentaries, while perhaps providing further detail, reveals that it is truly "that simple."  Each word is literal in its meaning, and we are to give.thanks.in.everything.  Even reflux.  So as my mind chooses to obey the command and urges my heart to follow suit, I find myself praying tonight with a thankful heart for reflux.  But now it is no longer the issue of reflux.  No, God has uncovered the pride in my heart, shining light on this area in my life that needs such change.  While it is a lesson that my sinful self will need to be reminded of again {as this is already not the first time}, I am thankful tonight that my God is ever loving and patient to use this challenge  to teach me that I must in everything, give thanks.

Giving Thanks Challenge ~ (Days #23 ~ 28}

Thanksgiving Challenge ~ Days #23 ~ 27

Topic: Noelle

{If you are new to this challenge, you can catch up on the details here}



The past Thanksgiving week has been extremely busy, yet filled with much joy as we were able to spend time with our family {Day #23}.

~Noelle celebrating Thanksgiving in her outfit, handmade just for her with love by Auntie Em~

Because of all that has transpired since June, we were unsure if we would be able to travel and were also constrained by the health of everyone who would be surrounding us.  Flu shots had to be administered to all, good health had to be maintained, and other various guidelines followed {which is no easy task when you are trying to connect your family from five states}.  We cautiously prepared, keeping in touch with everyone planning to attend and always being ready to stay home and employ Plan B if it became necessary.  However, after a final check-up on Monday and knowing that one of my sisters is a PICU nurse and another family member is a Pediatric Intensivist, we were cleared to go as far as Noelle was concerned.

~We were unable to obtain a picture of the entire group, but we did get all the girls!~

Tuesday was our departure day; and by God's grace, we made it to that point with everyone having met the needed requirements.  We packed {and packed, and packed some more!} and began our drive {no flying for us for a long while yet, due to exposure} to my sister's home in Kentucky.  Along the way, we had the wonderful blessing of stopping at my grandparents home and capturing a five generation photograph {Day #24}, as my great grandmother was visiting them for the holiday. 

~Five Generations~

What a precious moment this was, and I am so grateful to have been able to spend time with my great grandma and snap these photos that we will cherish forever.  On Wednesday, we continued our drive to Kentucky; and while a little tired of the car seat at times, Noelle did extremely well on her first road trip.  Upon arrival, we were greeted with smiles of joy from loved ones who have long prayed and anticipated the moment of meeting our little miracle; and any fears of how the situation might be handled through the week were immediately quelled as everyone gave space and utilized the hand soap and hand sanitizer that were readily available throughout the house.  One of my favorite aspects of this trip was that Noelle was able to meet her sweet cousin {Day #25} on this trip.  Although she was supposed to be five weeks older and the first grandchild, Ellie is two months younger and now the second grandchild on our side of the family.  However, you would never know it to see the two of them together!

~Noelle & Ellie, standing side by side~

As we did a little candid photo shoot with them before leaving {after Purelling Ellie from head to toe...literally!}, we were certain that we could see a budding friendship destined to last for the rest of their lives {well, perhaps it was wishful thinking, but we will assume that to be true for now!}.

It was so enjoyable to spend the Thanksgiving holiday with our family, especially as we rejoiced in the little miracle we held in our arms.  We traveled home with full and thankful hearts, refreshed with the sweet fellowship we had shared throughout the week.  As we unpacked and settled back into our routine, I was reminded of how grateful I am for the layout of our apartment {Day #26}.  This may seem silly; but in our situation, it has significance.  While at my sister's, we were able to borrow Ellie's video monitor while Noelle took naps upstairs in the bedroom.  Had we not had that device, I would have been sitting in the hallway through all of her naps, making sure her oxygen saturation stayed level since the pulse oximeter alarm could not be heard downstairs.  However, at home, we have one level, and Noelle's cradle and monitors sit directly inside our bedroom and can be seen all the way down the hallway.  I can hear her and her alarms throughout the apartment, and I realized not only how convenient this has become for us, but also how comforting it is to know that she is just that close all through the day.  She is continuing to progress well, and although she is still gaining weight slowly {weighing 10 lbs. / 13 oz. today} and is somewhat behind in her gross motor skills, she is still moving forward, and we are enjoying every moment.  She is beginning to sit up {Day #27} with some support, and I think she may be doing it completely on her own by her birthday!

~Practicing Sitting Up~

Milestones such as this mean so much to us, as each one represents yet another aspect of God's grace in her growth and health.  Finally, as I perused pictures today for this post, I was reminded of yet another special blessing for which I am thankful: Noelle's eyesight {Day #28}.  Many of you remember that she received eye surgery for ROP in February, but what I have not mentioned on the blog {due to the events of June that followed shortly after her last eye appointment} is that although her last exam still showed positive results as far as the ROP was concerned, the opthamologist believed that she is going nearsighted and would need glasses by the time she is one year old.  Honestly, glasses are the least of our concern, since we are just grateful that she can see at all!  This diagnosis has yet to be confirmed until our appointment on December 10th; but after watching her closely through the last several months, I am not certain this will be the case.  She seems to be able to see across the room without difficulty, and this was confirmed by the following photo.  As her Uncle Nathan held her in one part of the kitchen during our Thanksgiving holiday, Noelle caught a glimpse of her daddy on the other side of the room, and her response was captured in this picture.  Need I say more?  To say we are grateful seems hardly enough...

~Smiling at Daddy across the room~