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. 

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~

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!!~