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....

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~

Eleven Months Old / Giving Thanks Challenge ~ {Day #8}

Thanksgiving Challenge ~ Day #8

Topic: Noelle
Title: Eleven Months Old

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

~Really, Mom?~

I can hardly believe that I just wrote the title, "Eleven Months Old."  Where has the time gone?  There have been so many days through these months that I have not dared to think beyond the next hour or the next day, let alone dream about reaching her first birthday; and yet, here we are celebrating eleven precious months with our little girl and entering the home stretch to her one year birthday.  I am overwhelmingly amazed at God's goodness to us and thank Him for each precious moment we have been given with this little girl.  She weighed 10 lbs. / 10 oz. today and continues to fight and grow, tiny though she still may be.  Happy Eleven Month Birthday, Noelle!!  We love you!!!

{Although she is still on oxygen 24/7, she is doing well enough for us to remove the cannula for short moments of time, such as snapping pictures. }

If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  

***Do not forget there is only one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Giving Thanks Challenge ~ {Day #5}

Thanksgiving Challenge ~ Day #5

Topic: Noelle
Title: Growth

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

  

For this challenge, I have encouraged many of you to choose something that is currently a trial in your life and focus on aspects of it for which to be thankful; and because I myself have some of those challenges in Noelle's situation, I will be weaving in some of these items during this thirty day challenge.  

 

To be completely honest, I still have days where I struggle with Noelle's overall lack of growth.  For a mom of a micro-preemie baby, it can be stressful to adhere to a strict feeding schedule, attempting to cram as many calories possible into my baby during the day, and yet still yielding such small results for my efforts.   It has gotten easier.  Each pound that we have reached has lessened the stress level, but I think I often feel personally responsible for her growth, or lack thereof.  Of course the severe reflux has not helped issues along the way since we have had to experiment with her intake and medication levels in order to try and keep food down; and she is also burning a lot of calories during her waking moments since she never.stops.moving!  A hand is always waving or a foot is constantly kicking, and these are things we would never want discourage, especially developmentally.  Until last week, I thought we had finally crossed a hurdle.  Noelle had finally averaged a pound per month by her ten month birthday and had experienced her best two month growth period ever.  We made it past the sleep study and seemed to have the reflux mostly under control, and I really thought we would finally cruise a little faster, or at least maintain a more consistent growth rate.  But all of that changed at her appointment last Monday when we discovered she had gained only five ounces in three weeks, weighing 10 lbs./4oz.  Making it even harder, I know of so many other micro-preemie babies who, once they reached "term" and arrived home, started growing like weeds; and now you would never guess that they spent months in the NICU when they were first born.  So there have been discouraging moments and days, endless efforts, additional feedings, various sleeping positions, and even tears; but in the end, I have to remember that Noelle's growth is not my responsibility.  It is God's.  Of course this does not negate my responsibility as a mother to feed and care for my little girl; but ultimately, God is growing Noelle, not me.  He has determined her size and weight and her "normal," and I must relax and remember that her growth and progress will not happen by the chart.  So instead, I choose to focus on God's continued goodness, especially in her growth, and never forget the place in which we started.  Today, she weighs 10 lbs./8oz.; but in perspective, she weighs 168 ounces or 14 times her birth weight!!  Now that is something for which to be thankful!!

***Do not forget there are less than two weeks left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Ten Months Old

~Ten Months Old~

I just cannot believe that our baby girl is ten months old today ~ it hardly seems possible!!  The changes continue to amaze us, and we are soaking up every wonderful minute with our little blessing.  Our first week of lock down was a delightful change of pace with no doctor appointments (the first week with no appointments since early June!); and we kicked off this period with a special visit from Noelle's Auntie Kari and Auntie Barbie.  Noelle absolutely loved the company and all the extra attention and snuggles, and I enjoyed the sweet fellowship during the few short days they were here.  Unfortunately, Noelle's reflux flared pretty badly again this past weekend, so we moved up one of her doctor appointments by a couple of days to today.  Her medication has been weight adjusted thus far, so this flare up was evidence that she had outgrown her dose and was in need of a new calculation.  Thankfully, her pediatrician was able to put her on the maximum dose possible (now that she is big enough); and we are all hopeful that this new dose will improve the situation so that we may get more positive results on the sleep study next week.  The added benefit to today's appointment was that we were able to see how much weight she has gained, and she weighed 9lbs. 15oz.  That is the closest she has ever come to averaging 1 lb. / month, and I was excited to see her progress.  The rest of this post will be in pictures, but I am hoping to post more regularly again once we have a chance to get past our appointments this week and really settle into our routine of being at home all the time.  These coming months are going to be quite fun as this little girl makes us laugh in new ways every day; and we continue to thank God for your many prayers as we take one day at a time, seeking to wade through this time period in the healthiest way possible.

 Ten Month Activities

~Sitting up with a little boppy help!~

~A New Friend...~

~Helping Daddy Read~

~A little someone figured out that there are bows on her helmet...~

~Meeting Auntie Kari for the first time~

~Playing with Mommy's chin~

~Saying "See You Soon" to Auntie Kari...~

~....and to Aunt Barbie too~

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~

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!!~