Grace Outpoured

Seventeen Months Old

By Jill on May 9, 2013 in Birthday

This last month has flown by once again, and I am still surprised every time I write the title of the next “birthday.” These first two years of monthly “birthdays” are important in a lot of ways for most parents, since babies change so much during this particular time period; but they are especially significant to us since once Noelle turns two, she will no longer be “age adjusted” or evaluated by her original due date. In the words of one of her therapists, it means we have a lot of catching up to do in the next seven months. However, that being said, she continues to make great strides overall, and we are thoroughly enjoying being involved with all the changes that seem to happen daily with this spunky little girl. She was quite busy this past week as she entertained her Aguiar grandparents during their first visit here together since last February when Noelle was weighing less than two pounds and fighting for life in the NICU. What a drastic difference this trip was for them as they were able to interact and play with this now 14lb. 1oz. girl and enjoy the big personality that exudes from this tiny person. She has turned into quite the little “ham” and keeps the laughter ringing often in our home. We have some details to fill in once we have a moment to catch up from the fast pace of the last few weeks; but for today, here are a few pictures with her grandparents to document another sweet milestone now passed.

~Hey! Who turned the light on? It puts a glare on my glasses…~

~Do you have your glasses on too, Grandpa?~

~Everyone looking…~

~Everyone smiling…~

~Can you guess where Daddy is?~

~Say “Cheese” again?!!~

~Thanks for coming to visit, Grandpa & Grandma Aguiar. Love you!!~

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And The Results Are…

By Jill on April 26, 2013 in Medical Tests, MRI

Yesterday was a very full and long day. We arrived at 8:45 as instructed for Noelle’s MRI and began the process of paperwork, question answering, examinations, etc. that was required before actually beginning the procedure. Although this was not Noelle’s first MRI {her first one was just over a year ago before discharging from the NICU}, it was the first one which required full sedation, due to her age and size. The reason for this testing goes back to the very beginning of her life and suspicions of a tethered spinal cord. This issue can present a multitude of different types of symptoms and problems in various different people and often requires surgery to clip it in some form; but at our neurosurgery appointment a year ago, the doctor thought there was a large possibility that Noelle’s cord was actually not tethered. Because she was only 3lbs. 8oz. and not sedated for that MRI, the images were not entirely clear, thus presenting more questions than answers and the instruction to wait until she was one year old before repeating the test. And although she was experiencing some typical preemie issues with tightness in her limbs, she was actually moving her legs fairly well, also possibly indicating that her cord was not truly tethered {although the symptoms vary widely}. So we pushed the issue to the back of our minds and honestly even forgot about it in the midst of everything else we experienced through the rest of the year…until December. Noelle turned one in December and the phone calls began to arrive, requesting us to place the procedure on the calendar; but we were in the middle of lock down during one of the worst flu seasons in ten years, causing us to be hesitant about doing an anything “elective” at that point in time. So we postponed it as long as possible, knowing all the while that it would have to be dealt with at some day soon…which came yesterday. Honestly, I was not really concerned about the results, but the sedation was another matter since it had the potential to cause breathing issues and result in intubation; and although we were assured they would do everything possible to avoid that, it was still a risk considering her history. By 9:40, we had completed all the paperwork, questions, screenings, and final details; and they were ready to take her back. Only one of us was allowed to go back with her until she went to sleep, and Tom sweetly allowed me to be that one; but I had mixed emotions since I really wanted to be with her and yet hate those moments in which I have to turn around, walk away, and leave her in the care of strangers. The good news was that they were using a sleeping gas through a mask to put her to sleep before starting the IV. The bad news was that they did not anticipate what a fighter she would be, and so it took quite a bit longer for the gas to take effect. I absolutely hated watching her struggle under the mask, but soon the angry cries and tears subsided; and I was instructed to give her a kiss and was then shown to the waiting room to endure the next couple of hours as we waited. All in all, the wait was not dreadful….not like we’ve experienced previously for other surgeries and procedures; and just shy of two hours later, we were being summoned to the back again to greet her as she awakened.

~Greeting Daddy after the MRI~

~A Cold & Groggy Girl~

We were advised that they had experienced a couple of very small hiccups in the medicine they had to administer (but we had been warned this could be the case since her liver has been exposed to so many medicines for such a long period of time over the past year). But we were thrilled to learn that our main worry, intubation, had been completely avoided; and she had done quite well overall. We were told to expect her to be “out of it” for quite some time, making us chuckle and watch the medical staff react in surprise when she started showing signs of herself in just a few short minutes.

~Coherent enough to start removing things within a few minutes!~

From that point, we simply had to wait for her to warm up her body temperature and awaken completely before we could head across the street to the hospital for the next appointment to discover the results with the neurosurgeon.

~Not too sure about this strange bottle~

~Sweet face {with sensitive skin that did not like the tape they used during the MRI}~

~Dressed and Ready to Go!!~

We were finally discharged and allowed to leave shortly after noon and made the trek across the street to wait for our next appointment. Noelle thought it was great to have Daddy around all day and thoroughly enjoyed filling the waiting time, being entertained by him…

~Playing with Daddy’s thumb~

~Laughing at Daddy’s funny faces~

~Playing peek-a-boo with Daddy~

It took quite some time for the doctor to come to our room; and when he entered, I began to understand why. He greeted us but then stopped just inside the closed door and proceeded to simply observe Noelle for what seemed like a very long time. She was in the midst of playing with the paper on the exam table; and finally he began to ask more questions about what she was doing these days. He seemed to relax a bit upon finding out that she was crawling and pulling up, but then he began to explain the reason for his long observation and his concerns. Noelle’s MRI looked quite different from the last one, which both concerned and puzzled him at the same time. Her spinal cord is indeed tethered, although she is not experiencing outward symptoms as far as we can currently tell; and there was a spot in her neck that appeared as a possible problem of pressure on her spine, but she again was not showing any symptoms that might cause us to think there was an issue. Instead, the main concern was something different. Something that appeared as a very small spot in the middle of her spine a year ago, has now grown quite large and appears to be putting a fair amount of pressure on her spine. The puzzling aspect enters at this point since the surgeon had never before seen this in babies or young children but only in adults. The solution is typically very “simple” in that surgery is performed to remove the fluid without touching the spine; but bone does have to be removed for the spot to be reached, and in Noelle’s case, the long term effects are unknown. Thankfully, he is not rushing to recommend immediate surgery but is hopeful that this can simply wait and be monitored for a while longer, repeating the MRI again in another year. Further consultations will be held early next week as he meets with some other pediatric surgeons from around the country and will discuss this “unusual” issue with them and see if they have ever encountered this and what the course of action proceeded to be.

~Our Happy Girl~

So now we continue to wait, as has become our normal, and see what develops from here. We are certainly cautiously concerned at this moment; but when your life has consisted of a multitude of drastic unknowns and possibilities of treatments and outcomes, it creates perspective for situations such as yesterday. So we just continue to take one day at a time and enjoy every moment given to us. We arrived home last night exhausted and thankful…thankful that the procedure was over, that it went well, and that the results {as always} continue to be in God’s hands. From the bottom of our hearts, thank you for your many and continued prayers and love for our precious girl. We never would have imagined this road would still have so many twists and turns, but we continue to be grateful for the grace and peace that sustains us through it. My favorite picture from the day is this last one, because no matter what kind of day you have, it just does not get any more “normal” than this…

~My messy-faced, crazy-hair girl ready for her nighttime bath~

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Answered Prayer

By Jill on April 18, 2013 in Uncategorized

There is something special about worshiping with the body of Christ on Sundays. After being able to attend only a few times over our six month lock down period, this truth has become more real and precious to me; and I treasure {more than I ever did before} the opportunity to be in church with our little family. I never felt completely isolated during that time period since the advance of technology allowed me to participate in some level, seeing and listening to the sermons. But even that did not make up for the face to face connections with people or the corporate singing of praise to God; and as a musician at heart, I especially missed this. So it is no surprise to me now that singing certain songs with the body of Christ brings a flood of emotion. This past Sunday, we sang “O Great God,” a favorite of mine for many years. I love it because from the first line, it lifts God high and then places man {me} low…where I need to be before my holy, righteous God. The song continues in this manner, showing my blindness and depravity until my heart was impacted by the gospel…

“O Great God”

by Bob Kauflin

O great God of highest heaven
Occupy my lowly heart
Own it all and reign supreme
Conquer every rebel power
Let no vice or sin remain
That resists Your holy war
You have loved and purchased me
Make me Yours forevermore

I was blinded by my sin
Had no ears to hear Your voice
Did not know Your love within
Had no taste for heaven’s joys
Then Your Spirit gave me life
Opened up Your Word to me
Through the gospel of Your Son
Gave me endless hope and peace

But while these two verses are powerful, they are setting the stage for the final verse; and as I held Noelle in my arms and sang the first line of this last verse, my breath caught, and tears welled my eyes.

Help me now to live a life
That’s dependent on Your grace

How many times have I sung these words without truly requesting this from my heart? Even now, I constantly find myself waiting to get through the next appointment, the next therapy session, the next sets of tests, the next milestone, the next….whatever it may be…until we reach “normal.” And although I am learning to not be anxious through this, it is not enough. This is my new normal; and I have prayed for it, without even truly realizing what I was asking. It hit me like a flash of lighting on Sunday morning, and I suddenly understood that God had and was answering this prayer. For as we walk this road, we are being kept in a constant state of dependence on His grace. Somehow I knew this and yet did not fully realize it in this way. The rest of the verse goes on in prayer to God and in the end, states His worthiness to be praised and the desire for God to be glorified in me. But all of this is preceded by dependence upon Him.

Keep my heart and guard my soul
From the evils that I face
You are worthy to be praised
With my every thought and deed
O great God of highest heaven
Glorify Your Name through me

So today, I am not looking and waiting for “normal” or easy or even answers to looming unknowns. Today, I am reminded that He will do what it takes in my life to make me dependent on Him. This is my prayer, and I humbly plea that He glorifies His name through me in the process.

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Sixteen Months Old

By Jill on April 8, 2013 in Birthday

~ Celebrating Spring & the end of Lockdown!! ~

The days between Noelle’s fifteen month birthday and today have been so full that I had to look back at the blog to remember what was happening in our lives only a few short weeks ago. Our little baby has transformed into a fully mobile crawler and mover and is fast making her way into the toddler stage. March brought the hint of warmer weather {although it really did not consistently arrive until just this week}, so we began easing out of our lock down period with nothing less than multiple appointments and assessments for various issues and milestones. We still avoided situations with larger crowds until reaching Easter, but we did enjoy the regained freedom to visit with people and run the occasional necessary errand.

~Assuming the Position…~

~….And We’re Off!!!~

Meanwhile, things seemed to start “clicking” faster and faster for Noelle in her physical therapy sessions; and on Tuesday of last week, she made the first attempts at unassisted crawling. By the time she reached her therapy session this past Friday, she was moving longer distances and transitioning in and out of the sitting position with little difficulty. Around the same time, she also discovered how to stand up in her cradle {nearly giving me a heart attack the first time}, but I must admit that it has been amusing to watch her pleasure over her newly acquired skills. Actually, our pleasure matches hers as we transition into a new stage of life and training with this little one.

~Big Smiles for Daddy…~

We had many good reports this last month in the various appointments we attended. Noelle graduated from her helmet, weaned down on one medication and completely off another one, began unassisted crawling and pulling up, and gained a little height and weight to reach 13lbs. 7oz. Most of all, we are especially grateful to God for keeping her so healthy and hospital-free through this past winter. She did not experience even a runny nose, and we figuratively breathed a huge sigh of relief after coming through these last six months without incident.

~…but only serious faces for Mommy~

But as we look forward to the upcoming weeks, we do have some specific prayer requests for our precious girl…

~Hypothyroidism: Noelle’s TSH levels have been extremely high the last couple months, causing us to increase her medication and take her in more frequently for labs in between her doctor appointments. Thankfully, the results a couple of weeks ago were improved, but still on a very high level, causing her doctor {and consequently us} great concern. It takes approximately six weeks for her body to adjust to the medication each time, so it is a relatively long waiting period in between results.Our prayer is that the next appointment in May will reveal levels back in the normal range and that her medication will be the right dosage.

~Feeding Issues: Although Noelle has improved somewhat in her eating skills, she is still incredibly behind in this area and really struggles with food textures. This week is a big one for us as we have a long awaited in-depth evaluation with a specialist regarding this issue as well as occupational therapy sessions beginning this week to help improve the problem. I am very grateful to finally reach this week and begin getting expert advice and instructions on how to handle this matter.

~Tethered Spinal Cord: Some of you may vaguely remember mentions of this issue while Noelle was in the NICU last year. An MRI was performed shortly before we discharged; but due to Noelle’s extremely small size at the time as well as the lack of sedation, they were unable to obtain completely clear photos and thus answers. While her neuro-surgeon is suspicious that the cord is not actually tethered, the last MRI still had some possibly concerning questions which the medical team {and we} would like to have answered now that she is older and bigger. I am not really thrilled about putting her through this procedure; but after much thought and prayer and even a postponement for several months, we have concluded it is best to clear these issues up now in hopes that we will not have to again deal with them in the future.

My heart is full….full with the wonderful memories of all that has transpired in the last few weeks and full with what the future holds in the upcoming days. But in the end, my heart is also at peace since “what the future holds” is held by our loving Father who has already faithfully seen us through so much. My concerns pale in comparison to what we have experienced in the past; and frankly {thankfully}, a certain little girl hardly gives me a moment to consider them. So tonight as we close out this little “birthday,” I simply smile at the memories of this past month and thank God for all He has done. We are incredibly blessed.

~ Happy Family ~

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The Day We Came Home….

By Jill on April 2, 2013 in One Year Ago...

~Home, Sweet Home: April 2, 2012~

So much has happened in the last few weeks that I have felt like a hamster on a spinning wheel that continues to move faster and faster with no break in the momentum whatsoever. Noelle seems to be changing hourly at times, and the early indications of warmer weather have allowed us to begin easing out of our six month lock down period. But I will save all those details for a post in the near future since today marks yet another one year anniversary for our little family. We seem to have a lot of these, but they are significant to us and some more than others. Today is one of those more significant days, since April 2nd marks the anniversary of the day on which we brought Noelle home from the NICU after 117 days of a roller coaster journey unlike anything else I have ever experienced. Milestones like this are important to our family, not just because of how far we have come, but because we want to remember how far God has brought us and from where He brought us. I can remember that day as if it were today. It was an emotional, bittersweet time as we packed up our little space in the NICU…a space which had really become our home for many weeks. We said many “see-you-laters” (I don’t do goodbyes) to our NICU family and passed through the double doors for the last time as “residents.” For the first time, we took our nearly four month old baby on a car ride to the place we called our home. At this time last year, we were settling in with a 3lb. 8oz. baby on full time oxygen and monitors; and for a few hours, we were oblivious to the stress of what we had just undertaken , simply basking in the reality that we were indeed home. Home, with our precious girl in our arms. I will never forget that day. Today, our family looks a little different. The tiny, 3lb. 8oz. baby has gained nearly 10lbs, now weighing 13lbs. 6oz. She has continued in her endeavor to add gray hairs to our heads throughout this past year, but she also is persistent in making our smiles and laughter grow each day. We still have challenges to overcome in this journey; but God has been so faithful to sustain us, and we know He will continue to provide the grace and strength we need for the task ahead. So today, we look back with grateful hearts and give thanks to God for another precious milestone reached. This one is pure joy.

~Easter 2013~

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Another Goal Passed…

By Jill on March 13, 2013 in Milestones

After a very long day full of appointments, we are very thankful to be home with hearts overflowing of good reports. I must admit that I was overwhelmed headed into this particular day. We have previously had multiple appointments in one day and have even had multiple appointments between two locations; but today was three appointments spread across town among three locations, and each appointment was more than just a check-up. So after all those hints, can you tell in this picture what was removed in our first appointment this morning?

~A very tired girl at bedtime tonight, but happy to be free from……~

Perhaps these pictures will provide further clarification….

~Taking a nap on a sunny but cold day (Fall 2012)~

~Learning to nap in the crib (Winter 2013)~

We are very happy to say that Noelle has officially completed the time needed in her helmet, and she has now “graduated” from this form of therapy! We have other exciting things to report from her appointments today but will save that for another time after some much needed sleep. As always, thank you for your many continued prayers. We look forward to sharing more with you soon!

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Fifteen Months Old

By Jill on March 8, 2013 in Birthday

Fifteen Month Old Girl ~ Our Little Explorer

Where has the time gone? I am amazed at how fast this “birthday” has rolled around this month. I think the main reason for this is that it seems so many changes have occurred within these past four weeks; and these are not just any kinds of changes but the kind that begin to make you feel as if you are losing your tiny baby.

“Lock Down Partners” (Visiting with Papa Don on his lock down after heart surgery)

I have mixed emotions on this, as do many mothers; but the one difference in my case {unlike most} is that I cannot truly be sad that we have begun to lose this stage”so quickly” for it has actually been rather long in coming! Although I would still never desire for our daughter to start life in the manner that she did, nor would I choose the many agonizing moments we have experienced, I can still be ever grateful for the fact that we have enjoyed a longer baby stage than most parents ever have the pleasure of experiencing.

One of MANY new tricks…

Being an absolute lover of this stage of life has made it all the sweeter, and I must confess that while I have fought for every ounce, every milestone, and every conquered hurdle, I have still enjoyed the sweetest side of the “consequences” to all that Noelle has endured. So while my heart gives a slight twinge at the hint of leaving this stage behind, at the same time it leaps in anticipation of all that is to come in the days and months ahead. My days with her are simply a joy, and I absolutely treasure the privilege of being the mother of this precious girl.

Physical Therapy Day~Learning to Pull Up!!

Our days this past month of have been incredibly full as therapies persisted and difficulties continue to be overcome; but emerging from this process is a busy little bee who is becoming more aware of her surroundings each day and thus realizing that her new-found mobility is a much desired asset, opening doors even wider to new and exciting possibilities. So as we look back on the past few weeks and celebrate another “birthday,” we also thank you for your continued prayers and thank God for all He has done. What a joy!!

Sweet Snuggles with Papa

Comments { 2 }

And The Emmy Goes To….

By Jill on March 7, 2013 in FOX 8

Many of you have seen and remember the various stories that Bob Buckley produced along with our local FOX 8 news station throughout this past year. What is not as well known {or given much thought} are the “behind the scenes” people who work with reporters such as Bob to shoot, create, and deliver these stories to the public in a manner that touches their hearts and minds in a lingering way. Bob and his team toil through hours of filming, interviewing, editing, writing, and so much more, to bring a story that airs for a few short minutes, while still capturing the information and complete essence of the hours upon hours of time researched and spent. A small window into this world has been opened to us as we have spent much time with Bob and his photographers through these many months. We have had the privilege of meeting and working closely with two of Bob’s photographers, Eric Sander and Ferlon Webster. Both were fantastic, and we enjoyed personally getting to know each of them during our time together. But it was Eric who sat across the table from us along with Bob in that very first meeting…the meeting in which I was certain we would politely listen to what they had to say and then {as graciously as possible} tell them that there was no way we would ever allow a news team to document or even be present for such a personal and difficult moment of our lives. It was also Eric who was present and filming during the ultrasound appointment in which we were given the first glimmer of hope; and it was Eric whom we called as they prepared us for the emergency delivery of Noelle {and having no idea what outcome to expect} on that early December morning that changed the course of our lives forever. Needless to say, we have a special bond with Eric and thus were incredibly happy for both him and Bob this last fall when we learned that they had both been nominated for Emmy awards for the work they had done on our original story. The nominations alone spoke volumes of their level of work and commitment; but these nominations turned into higher honors when the actual awards banquet arrived in January and both Bob and Eric received Emmy awards for their individual {and yet collective} efforts on this particular story.

FOX 8 Brad Jones, Bob Buckley, and Eric Sander with their Emmy Awards

It was more than well deserved for not only had they effectively portrayed the event, but they had also remained honest and true to our personal desires and most importantly, our faith in God. We could not have been more happy for two people who have become very dear to us along this journey. But our pleasure upon their behalf turned to humble surprise a few weeks ago after Bob Buckley contacted us and requested to meet in order to give something to us. I did not think too much on the subject and assumed that perhaps he wanted to pass along some extra footage from some of the later stories. We arranged a time that worked for him to drop by and see Tom and Noelle {I had taken the opportunity to run a few necessary errands since we are still on lock down and cannot take Noelle out}, so I was shocked when I arrived home and saw the “something” that Bob had delivered. It was Eric’s Emmy award.

We had not seen Eric in months since he moved across the country last summer and had been in the region for only a short time for the awards ceremony; but here, in our very own hands, was his hard-earned award. Words could not adequately describe what we felt or thought, but we were incredibly humbled at the gracious gesture that had just been extended to us. But why? For while the world around us holds these types of awards in the highest esteem, it meant something entirely different to us. It is a symbol of friendship, love, and sacrifice, an emblem of sweat, toil, and tears. But in the end, to us it is another physical reminder of God’s grace~visible evidence of a story written by Him that has now touched people’s lives forever. And so we cherish it; and we thank you, Eric, for your amazing generosity in passing along something that means so much to you not only in your career, but also in your personal endeavors…for the two are never truly separated. Even more than that, we continue to be grateful for the story that has now been so carefully documented for us to continue to share with our friends and family across the world. That is a gift for which we could never adequately express our appreciation. We look forward to the day when Noelle questions us about this award sitting in our home, and we can say to her, “let us show you a story about a tiny miracle baby….” Our hearts could not be more full. Thank you.

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Another One Year Birthday…

By Jill on February 27, 2013 in Birthday, Milestones

This past Sunday, February 24th, we passed yet another milestone in our little family. It was not one we celebrated or even particularly paid special attention, but it was on my mind all day nonetheless. Why? Although exciting, it was not because of the teeth Noelle is currently cutting {FINALLY, two bottom teeth are making an appearance!}. No, instead February 24th was Noelle’s original due date; and the thought still brings mixed emotions. The day was very full with church activities and then some unpacking as my mom continued the process of moving into her new home {for which we are very excited…she is only a couple of minutes from us!}. As we sorted through boxes, I came across a beautiful but small cut of fabric along with some ribbon and various trims. I assumed it was leftover from a dress project for one of my sisters; but when I inquired of my mom about the pieces, the answer stopped me in my tracks and reduced me to tears. The sweet items had not been a part of another outfit; but in fact, they had been purchased specifically for Noelle’s tiny funeral dress. The flood of memories were painful as I recollected days and weeks of living with the expectancy that Noelle would be stillborn and yet never giving up hope that the doctors would be wrong. The grief and sorrow from that time were overwhelming, and yet God never abandoned us or left us to despair.

~Two Teeth Smile {barely discernible but they are there!}~

And then from the other room, I heard the sound of tiny laughter, causing the tears to take on new meaning. Noelle’s original due date and this set of fabric could have always been a source of pain, but they are now far from that. Instead, they are yet another incredible reminder of God’s goodness in our lives and another piece of evidence of His continuing grace; and maybe someday, that fabric will be turned into a celebration dress. I pray we never forget…

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Happy Monday!

By Jill on February 19, 2013 in Video

This funny girl is constantly making us laugh, so we thought we would share a snippet of what we experience on a daily basis and give a sweet start to the week. Enjoy!

Laughing – Computer from Grace Outpoured on Vimeo.