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!!***

And the Miracles Continue...

~Tired Girl after the Sleep Study Night~

Many of you remembered and were praying fervently for Noelle's sleep study last week.  Personally, I thought it had gone well, based upon the monitor reading through the night {I took our own monitor this time so that I would have some indicator of her saturation levels through the night}.  However, I had thought the previous sleep study had gone well until the results came back; so I was cautiously optimistic this time around.  During the weeks in between the two studies, we had been very aggressive about addressing Noelle's reflux issues {through medication, sleep positions, holding her upright for long periods of time after feedings, etc...}, but she had a terrible flare up the week before this study which made me somewhat nervous.  We adjusted her medication again, and that had seemed to help; but we still did not know how this would affect the study this time around.  She actually did not sleep very well that night and woke up crying a few times {I think she was just extremely uncomfortable with everything that was attached to her}, so I really had no idea what to expect as far as the results were concerned.  We were tired girls the next day, but I was grateful to be past the whole experience since she gets pretty upset by the time they are done gluing and taping everything to her.  Then came the waiting.  "Waiting" seems to be one of our hallmark lessons of this past year {more on that in a later post}; and while we certainly have not mastered this trait, we have learned that it does not help our situation to worry through the waiting process.  I secretly hoped to have the results the next day {as we did last time}; but when we did not, I took comfort in God's perfect timing and wondered if maybe the longer waiting period meant that the situation was not as urgent this time.  The sleep study was on Wednesday night, and by Friday night we had still not heard anything and would have to wait through the weekend.  We enjoyed some wonderful, rare family time together, and Noelle even laughed several times, making me earnestly hope that we would not be losing that wonderful sound to a tracheotomy.  Most of today passed {the business hours, anyway} with still no word; but then suddenly the phone rang, the caller ID reflecting "Wake Forest."  My heart skipped a few beats as I picked it up, and the conversation that followed went like this:

Me: "Hello?"
Pulmonologist: "This is Dr. ____.  Is this a good time to talk?"
Me: "Yes, it is.
Pulmonologist: Well, her sleep study results are normal.
Me: W-w-what? 
Pulmonologist: They are basically normal!!  The normal overall grade is "1" or less, and she was at "0.5."
Me: Really?!!!
Pulmonologist: Yes!!  I say "basically" because she had one desaturation episode associated with an apnic episode in which she dropped her levels to 85, but it was only one time.
Me: That is great!!
Pulmonologist: Yes it is!!  She went from severe, severe, severe, SEVERE sleep apnea to completely normal, and I am so pleased!!  It shows you how bad reflux can truly be...

We discussed a few more things before ending the conversation, but I was in some shock.  We had hoped and prayed for some improvement; and God demonstrated how small our faith is {once again} and how big He is by completely eliminating the improvement clause and jumping right to normal range.  Noelle went from an average of forty episodes per hour to only one through the entire night.  Our hearts are filled with awe of our great God and extreme thankfulness that we are not scheduling her for a tracheotomy procedure.  Would He be less great if things had turned out differently?  Absolutely not.  We would have walked the tracheotomy path if that is what was best for Noelle in the larger scheme of things; but as her parents, we are so grateful that God intervened, and she is not going through such a traumatic event.  Now, we are ready to truly settle into this lock down period and attempt to stay as healthy as possible through these winter months, hopefully avoiding any setbacks or hospital stays.  We cannot thank you enough for your many prayers for this sleep study issue and your continued prayers for Noelle's health.  We are incredibly grateful from the very bottom of our hearts.

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~

PICU Day 16 ~ Full Update

~Chilling before the swallow study...hungry & sleepy~

Today was a very busy day with various tests and changes, but it was encouraging to move forward with some things in an attempt to seek answers, as opposed to simply waiting for some other symptom to surface.  The day began at midnight with the Lovenox shot, but Noelle actually settled quite quickly afterwards and was able to sleep until they needed to draw labs at 4:00a.m.  Unfortunately, her central line was no longer pulling back, so they had to stick her separately to obtain what they needed; but of course, it took three times to secure the full amount required for the tests they needed to run.  Thankfully, I was allowed to give her a partial feed with her bottle and distract/console her and then spend some time cuddling as well.

Actually, the consoling is probably more for myself than for her as she recovers quite quickly now that she is feeling so much better.  It still takes a toll on her, but our happy girl bounces back and often has smiles for everyone as soon as they are done messing with her.

~Sleep finally won out~

Through the night, the nurses had been carefully recording all of Noelle's desats for the pulmonology department to review, but she had had only a few and had self recovered quickly.  However, two hours after her early morning bottle, she starting desatting back to back, giving better insight into some of the things I had described previously to the doctors.  While I do not like to see these things happening, I am thankful that it is happening while we are still in the hospital so the medical team can see for themselves what I have seen and suspected for weeks.  7:00a.m. brought the need to obtain a blood gas; but she was so tired that she simply showed some discomfort but did not open her eyes and settled back into a deep sleep after they were done.  

~These echocardiograms are not so bad!!~

The large concern presented here as they discovered that Noelle's CO2 levels were significantly high, but other things were on target so it puzzled the medical staff greatly.  We reviewed things again through morning rounds, and the cardiologist decided to further consult with the GI and pulmonology departments for the various issues we were still experiencing.  The determination was to send her for a full swallow test to be certain she was not aspirating while feeding, as well as to see if they might possibly detect any signs of reflux (this is not the test used for reflux, but they can sometimes see indications).  This test was amazing to watch!  We traveled to a different floor (which is no easy task with a baby on oxygen and monitors...the equipment they can attach to her hospital crib is impressive!!), and entered a radiology room that had a very large machine.  They put Noelle in a little seat behind the machine, and I was allowed to sit a distance away and watch the results on a computer screen.

~Sporting a new headband from Auntie Em~

~Early Morning Bottle~

They put a small amount of dye into her milk and then fed her as she sat in the baby seat, all while the machine took an x-ray video of her progress.  The x-ray video portrayed on my computer screen and literally showed the milk in her mouth, the swallow motion, and the milk coursing through her little body down to her stomach.  It was incredibly enlightening and was fun to watch!!  Thankfully, she passed the swallow test with flying colors, but they did see signs of reflux (for which I was thankful...we have known for months that she is refluxing but were not sure of the severity).  That gave a pretty definitive answer to the desat episodes; and they decided to switch her medication in an attempt to better control the issue.  From there, we traveled back to her room and met the ultrasound technician to perform her echocardiogram, on which we hope to have results back today (we are looking for better function of the right side of her heart as well as lowered pulmonary pressures).  We consulted with the pulmonology department in the afternoon, and they are puzzled by this high CO2 level and are not willing to let her go home with this issue unsolved.  Unfortunately, because it is so unusual, they are trying some different therapies/treatments but are not sure of the cause or the solution for this issue.  Consequently we started some PT chest therapy and albuterol treatments for 24 hours, and they will recheck the blood gas at the end of the day to see if any changes have occurred. We then were informed that although we are still sorting through these final issues, Noelle was stable enough to move to "the floor" (which is really only a few doors down from where we were currently), so we made the transition to the much larger and more private room.  The evening was spent doing laundry (yes, we feel we fully live here now!!), and getting back to Noelle's regular feeding schedule as well as the therapy schedule for the night.  Of course the amount of time that needed to occur between the feeds was different than the therapy, which was different than the shot, which was different than the labs.  So needless to say, it was an eventful night; but thankfully, Noelle seemed to rest very well in between all of the interruptions.  We are hopeful that after getting back to full bottle feeds and the repeat blood gas that we will be cleared to go home and continue care as an outpatient.  We are so thankful for the little things that God allows to happen to encourage us and strengthen us along this path and are excited at the possibility of going home very soon!  Thank you for praying along with us.

PICU Day 14 ~ (July 8, 2012)

~Giving Nurse Jacy a Goodbye High Five~

Noelle turned seven months old today and celebrated by graduating to the Intermediate Care Unit where they keep the high acuity patients.  We still have one more level to step down {what they call "the floor"} before she can go home, but we are one step closer.  Oddly enough, all of these units are connected in a "U" shape, but the PICU has its own entrance.  So now we come through a different set of doors and have a completely different care staff {other than the main doctors, who remain the same}.  The atmosphere is quite different and much more noisy than where we were previously; and unfortunately, Noelle has taken careful notice of these facts.  I did not expect such a reaction from her since we moved only a few steps down the hall, but it is different enough for her to feel unsettled and scared when she wakes up and does not recognize her surroundings.  Thankfully, we still have our own room and can both still stay with her and be close for her every need.  The parameters for moving to the next level have not been revealed to us yet, but we do know that the doctors would like to complete some further studies before she goes home.  The latest theory is that she may be aspirating some of her milk when she eats or refluxes as she still chokes fairly often when she eats her bottle {preemies often mix up the eating sequence: suck, swallow, breathe, and instead often breathe in before swallowing, causing themselves to choke}.  She has gotten better about it since she was in the NICU, but it is still pretty severe  and even still scary to us and would cause most people to panic if they saw one of her episodes.

~Getting rocked by Daddy after waking up scared~

These possible aspirations could explain the trigger to this aggravation of the pulmonary hypertension, and so a swallow test and perhaps a barium test will be performed to determine if there is any issue and if they can help her in some way.  We are hoping for some definitive results from these studies and even some solutions that may prevent us from being back here shortly.  A sleep study has also been mentioned since she still tends to desat at night while sleeping deeply, and they want to be certain that there is not a true issue either.  The blood clot in her leg is still of utmost concern although they were able to detect a faint pulse in her foot throughout the day, encouraging us greatly.  We will continue with the levonox shots for at least four more days and are praying that will be the end of those with only a partial baby aspirin being the therapy used at home.  Noelle weighed 6lbs. 1oz. today which is encouraging because she is consistently above 6lbs now, but slightly discouraging since she was 6lbs. 2oz. two weeks ago before all of this started, and we have not yet progressed past our baseline from that time.  However, we are hopeful that once she fully recovers from this issue that she will start hitting larger growth spurts as her heart continues to heal and quits burning extra calories trying to function properly.  I am sure there is more that I am forgetting, but I will have to write tomorrow concerning anything missed.  Tonight will be filled with lots of snuggles as we attempt to help Noelle adjust to her new space, and we truly thank you for your prayers as we traverse all of these transitions in an effort to make one more step toward home.  Thank you.

PICU Day 4 ~ (June 28, 2012)

~Saying "hello" to Daddy after his day at work~

We are settling into this place for the long haul as more findings today raised more questions, requiring more tests with Noelle's heart.  One of her cardiologists {who has followed her heart from before she was born} spent quite a bit of time doing yet another echocardiogram this morning so that she could compare images from yesterday as well as images from the past 7+ months of echocardiograms.  After much time and consulting with the cardiac team, they have determined that there are some definite abnormalities with Noelle's heart, but they are uncertain as to how this is affecting her or if it is impacting the current situation or not.  The right side of her heart is still not functioning although we have seen clinical improvement with her; but while several of her issues are common with pulmonary hypertension, she also has several things that are not typical and thus giving them more cause for concern {especially considering that there is no clue as to why she suddenly started doing poorly again}.  So they have decided to perform the heart catheterization next week and hopefully be able to make some determinations and a care plan from that point.  Worst case scenario {as of what we know right now}, she would require some type of heart surgery to fix the issues they believe they are seeing {and contrary to some misinformation floating out there, we are not anywhere close to facing a heart transplant at this juncture}.  Still, there is much we do not know, and so we just continue to wait and see what God unfolds for this precious little girl.  Today was a tough day in many respects, not so much because of this news but because of the daily things that begin to wear on you during hospital stays such as this.  The various tests, IV sticks, blood draws, and heel sticks take an extreme toll on her tiny body, especially when the blood for her labs constantly clots or a vein collapses and requires them to stick her multiple times during the day.  I hate the scared look in her eyes that wonders "what is coming next," and yet I am also thankful that she will not remember any of this.  There are certainly residual effects from all of it, but we have seen her reactions change during her time at home as she realizes that touch is positive in that environment; so I am encouraged that we can reach that point again with her after a lot of love and time at home once again.  Days like this are very hard on her physically, and they are emotionally draining for me.  However, when she is able to have a good nap and wake up acting as if she does not remember any of the things she experienced, the hard parts of the day just melt away.  That little smile does wonders for my heart, and she spent a long time tonight just talking, smiling, and playing with us before she settled into a deep sleep once again.  Of course we snapped all kinds of pictures, which I will share at the end of the post {but we did not even begin to capture all of the smiles she was sharing tonight!!}.  Some positive news from today was that they are nearly certain that the acid reflux was causing her desaturations yesterday, and the ng tube has nearly eliminated them today and made it possible to wean her oxygen flow down to a much lower amount {comparatively}.  As we have experienced many times through this journey, God continues to place us into situations with Noelle that do not provide immediate answers and cause us to constantly depend upon Him for strength and comfort.  He truly has carried us through these many months of unknowns, and we have confidence He will continue to do so through these coming weeks as we seek to make the best decisions for Noelle's health.  Please pray for wisdom for both us and especially the doctors and for rest and health for all of us, and we hope to report uneventful days through the weekend as they attempt to help Noelle rest and build as much strength as possible in preparation for this procedure early next week. While we cannot usually respond, we do read your many encouraging comments and notes of prayer for our little family; and we appreciate it more than we could every possibly communicate in words. Your fervent prayers before God's throne are a testament to the body of Christ and an encouragement to our hearts.  Thank you.

~Rested & Contented Little Girl~

~Sparkling Eyes~

~Precious Girl~

~This is our "normal" happy girl!!~

~Sweet smiles for Daddy~

~Hello, camera!!~

~Shall I pose for you?~

~Sitting up like a big girl (with help, of course!)~

~Excited about the goofy noises that Mommy makes~

~I can make my own goofy noises too!!~

~...and goofy faces...~

~....and priceless smiles.~

~Happy, Happy, Happy!!~

~We can make it through some more of these days, Mom!!~

~Tiny but brave little fighter~

NICU Day 71 ~ (February 16th)

Today was pretty uneventful overall as Noelle continued to adjust to being in a new place.  While she definitely could not be termed as a fussy baby, she cries more than I have seen her do before, and it just seems to take longer to get her settled into comfortable positions.  I think a lot of it is the bed is made up differently than to what she is accustomed, and the acid reflux makes her more uncomfortable in certain positions.  All in all though, she rested better today, and I held her for periods of time in the morning and afternoon, and that seemed to help settle her down as well and give her something reminiscent of our familiar routine.  Her eyes did not look as red and swollen today, and the one that had bled some originally seems to have cleared up....just in time for another eye exam in the morning.  We are really praying for some definitive answers from this exam tomorrow morning.  They could say that she needs the surgery right away based on the progression they see, or they could choose to continue observing her (in which case, we will request that she continue to be observed at Forsyth).  Thank you so much for praying for us.  We need a lot of wisdom and patience right now as we have had to advocate on her behalf the last two days like never before.  We will update as soon as possible after her eye exam tomorrow and let you know how things are proceeding.  In closing tonight, I'm just going to list some of the blessings that I have been focusing on the past couple of days as we try to adjust to all this change.  God is teaching me to be content right where He places me, and to rest in Him yet again.  Thank you for also praying with us to that end.

Current Blessings:
~Noelle has the same Neonatologists who have been seeing her since day one.  While the rest of the medical staff/care is different, her head doctors are the same, and it's comforting that they know her and her history and can continue to diagnose accordingly.
~The Neonatologist who has been following her the past two days is the same one who toured us through the NICU 3 days before she was born, who was at her delivery, and who has been with her during her two most difficult sick periods since she was born.  We were so happy to see his face on Wednesday morning!!

Ultimately, we know that God has a purpose through this, and while we do not understand at all, we can continue to rest in His goodness.

NICU Day 65 ~ (February 10th)

After a bit of a rough night last night, Noelle recovered well and had a pretty good day today.  Her acid reflux is still causing issues, but they were able to give her something to help clear out her intestines last night, and that seemed to help her for now.  She had a busy night with x-rays and lab work, but the results from both of those came back normal, so we're grateful that she seems to be feeling better today.  Many have wondered about her acid reflux and what might affect her, but after much discussion with the medical staff, it is not related to my diet.  The acid reflux is caused because she is so tiny, and her stomach just has difficulty handling all of that milk at one time.  She needs all that milk to grow, and yet the high amount causes the acid reflux, so "we can't win for losing" on this one.  Thankfully, she is continuing to grow and now weighs 870 grams / 1 lb. 14 oz.  We are getting so close to 2 lbs. and are excited to be reaching another milestone with her!!  Our time with her today was really special.  She is becoming so alert and responsive to us, and I thoroughly enjoyed watching her respond to Tom as he read to her this afternoon.  She completely turned her head toward his voice and just stared with eyes wide open.  It was incredibly sweet to watch such a tiny little person respond like that.  She definitely knows her daddy!!

~Listening to Daddy Read~

We also discovered today that "when the parents are away, the nurses will play!!"  Noelle has a little stuffed giraffe given to her by Kaci, one of our nurses' daughters, and it sits on her isolette.  We have commented before, that she is small enough to ride it, but last night our nurse decided to have some fun and play with Noelle and her giraffe.  The result was a CD of pictures for us entitled "Rodeo Noelle,"  and the pictures are just too cute not to share.  We love our nurses and are glad they have fun with our little girl while they are taking such good care of her.  

Thank you for continuing to pray for our sweet little girl, and we look forward to sharing more of these moments that God gives us with her.

NICU Day 63 ~ (February 8th)

Noelle turned 2 months old today, and I can hardly believe it!!  Overall, she is still doing really well with the main issue right now still being her acid reflux, and it seems that is just going to take some time.  Hopefully she can outgrow it before they have to resort to medications or (worse case scenario) surgery.  She had several episodes today where she dropped her heart rate due to the reflux; but for the most part, she just rested today, and we each got to spend some time holding her.  I think one of my favorite sights is watching her and Tom doing Kanga Care (skin to skin contact) together.  She just snuggles right up with him, and it's a sweet image to see her tiny little body nestled into his.  So, while the dropping of her heart rate made my heart rate increase a few times today, overall it was a pretty "boring" day, and we are thankful for that.  We still appreciate your continued prayers and hope to report another good day tomorrow!!

NICU Day 62 ~ (February 7th)

Noelle had a fantastic day today, and we are finally starting to feel like we're really settling into some kind of routine.  It still is not the same every day, but it is getting less stressful, so it feels like we are at least getting the hang of this (well, sort of anyway).  It definitely helps that she is doing so well right now and also that we are able to interact with her so much more.  We were able to spend a lot of time with her today, and while she was sleepy for most of that, she did wake up for her bath and spent quite a bit of time interacting with us for a while.  Watching her tiny eyes follow our voices or having her reach up with both her hands and hold tightly to our fingers brings such joy to our hearts, and we do not take for granted the fact that we are able to do these things with her.  She weighed in at 1 lb. 13 oz. tonight which means that she has gained one pound since she was born almost 9 weeks ago!!  She also did really well with her oxygen levels today and did not have as many episodes as the last few days, so we're hoping that means the acid reflux is improving.  We are so thankful to God for our tiny bundle of joy and thank Him for His goodness to us.

(And yes (for my friends that I know will ask :-)...her onesie says "Daddy's Princess" on it.  She gets to be a princess while in the hospital only.  We do not want to raise a spoiled little diva!!  But Daddy still enjoyed dressing her in this tonight.   She definitely already has him wound around every tiny finger!!)

NICU Days 59-61 ~ (February 4th-6th)

Noelle continues to do very well, everything considered.  It is really getting fun as we spend time with her, and she has more wakeful periods of time in which she can interact with us.  It is also a huge blessing to be able to hold her so much.  She currently weighs 800 grams / 1 lb. 12 oz. and seems to be on a good trend of gaining weight and growing.  They have had to increase her oxygen flow in the last couple of days to help with the acid reflux, so hopefully that will help her recover from that more quickly and be able to start weaning down on her oxygen again.  She also received a blood transfusion over the weekend as her hemoglobin was low, and hopefully the added blood will help her digestion and consequently help the acid reflux as well.  She seemed to do better this afternoon with the reflux, so we're hoping that is a good sign of progress that will continue.  She will start receiving physical therapy soon.  Term babies "float" in fluid until they are born, relieving pressure from their limbs.  However, preemies are lying in a bed, and although they are switched in positions every few hours, they still often develop issues with their limbs.  The issue should hopefully resolve with physical therapy which we will need to continue daily with her even once she is home.  It's a little overwhelming some days as we start to grasp everything that is involved with bringing home a preemie baby, and yet when we think of how far God has brought us, we cannot help but continue to trust that He will sustain us and see us through all the issues she still needs to overcome.  He has been so incredibly gracious to us thus far, and we are thankful once again that He is sovereign over all things.  Thank you for continuing to pray for our family!!

NICU Day 58 ~ (February 3rd)

Noelle had a great day today overall, and she has maintained her weight the last two days (no gain or loss).  She is still experiencing the acid reflux, but they were still able to wean her oxygen flow again today and she handled it well.  She is doing so well that the nurses are already starting to estimate how much longer she will be in NIC 1.  There are two sides to our NICU.  NIC 1 has the more critical babies (where we have been the past 8 weeks), and NIC 2 is babies that are stable and much closer to going home.  The "graduation" to NIC 2 is significant to parents because of everything it represents, and it is exciting and a little scary all at the same time to think that that day is quickly approaching.  All of the nurses rotate both sides, but some nurses can work weeks on one side before working the other side again.  I must admit, that I am a little (okay, VERY MUCH) attached to our little space that we occupy in NIC 1 and the nurses that we have on a consistent basis.  Some weeks, the care changes daily, and other weeks you will get the same nurse for days in a row or nights in a row.  I like that part.  I enjoy getting to know and build relationships with nurses that are consistently taking care of her.  However, that said, we have never had a bad experience with even one of the nurses in the NICU.  We definitely are much closer to certain ones and have gotten to know them really well, but even the ones that we don't know as well have been really good with her.  We have no complaints.  And so, when the time comes to say "good bye" to our little space in NIC 1, it will be exciting and bittersweet all at the same time.  Even I think that is a little strange to say, but when your life is lived in the NICU, nothing is quite "normal."  I know that we will meet more new nurses on the other side and develop relationships with them too, and I hope that some of the nurses we have now will rotate into NIC 2 more often once we are there.  Words just cannot express the thankfulness in our hearts for these precious people ~ people who do not view this as their "job."  It is their passion; and when they care for your baby, it is from their heart.  I could never say enough about them or to them in thankfulness for their service to our family.  And so, we start mentally preparing for the day that we show up to the NICU, and the front desk informs us that we have "graduated."  It will be a giant step closer to coming home.

NICU Day 56 ~ (February 1st)

Overall, Noelle had a really good day.  The main prayer request is for her acid reflux.  She is experiencing it quite a bit, and it often causes her to hold her breath and drop her heart rate creating "episodes."  It is very common with preemies, and the main thing that helps it is growth.  So, we are praying for both the acid reflux to subside and her growth to continue upward.  She is doing very well otherwise, for which we are very thankful.  I hope we can report improvement tomorrow!!  Thank you for praying!!

NICU Day 53 (January 29th)

Noelle had another really good, quiet day overall.  She gained 30 grams putting her at 700 grams total (or 1 lb. 8.7 oz.).  She is only 12 grams away from doubling her birth weight so we are hoping she reaches that and then passes it by very soon.  They do believe that she is probably experiencing quite a bit of acid reflux due to her small size.  She has been having quite a bit of desatting lately but she always brings herself right back up.  It is typical with acid reflux, so we are hoping that it gets better as she continues to grow.  Some days, she seems to sleep so deeply that it does not bother her too much, and other days it really seems to make her uncomfortable.  Today was a deep sleeping day so hopefully that means continued growth spurts.  We did not hold her today--she was on the cold side with her body temperature so we kept her in her isolette and piled on the warm blankets.  Other than those things, it was a pretty uneventful day. 

On the subject of Noelle but a slightly different note, there is a story airing on FOX 8 News (our local news station), this Thursday evening at 10:00p.m.  A lot of people have been asking about it so I will explain some of the background.  This story actually began back in October when we thought we were facing a fatal condition with Noelle.  We had contacted the NILMDTS organization ("Now I Lay Me Down to Sleep") which does volunteer photography for parents who have lost or will lose their baby.  It took us quite some time to reach the point where we would consider photographs if Noelle was stillborn, but in the end, we thought it would be the only thing we would have left to document the short time we would have with her and the only thing we might have to share with future children.  So we contacted the NILMDTS photographer for our area and were introduced to Tammy.  She met with us and learned our situation and offered to do a maternity session for us (which pictures many of you have now seen) and then to be there when Noelle was born to take photographs for us as well.  She also told us that FOX 8 had contacted her hoping to do a story on NILMDTS and to follow a couple going through the process.  The decision was up to us, and we told her we would pray about it.  Our initial reaction was "no way!!"  Things were difficult enough without cameras being in our face, but as we talked through things together and prayed about it, we had a change of heart.  It was yet another opportunity to document our journey with Noelle for our future children to see (keep in mind that at this point, we are preparing for Noelle's stillbirth) as well as to possibly be a testimony to the community.  We agreed to meet with Bob Buckley and then make our decision.  After meeting with him and Eric, his photographer, we agreed to move forward with them, understanding that we could back out at any time and after making it clear that our faith in God was preeminent in our lives, and we did not want that fact hidden from the story.  So they have been following us for quite some time and were there at the ultrasound when we first heard positive news and thought things might be changing with Noelle's outcome.  They still chose to follow the story even though the circumstances changed and the first part is now airing this week.  If you do not have a TV or if you are not local, FOX 8 has a livestream on their website, so you can watch it here (http://www.myfox8.com/news/livestreaming/) at 10:00p.m. eastern standard time on Thursday, February 2nd.  It will be shared by Bob Buckley in the "Buckley Report" sometime within the newscast.  We are constantly amazed at the relationships that continue to develop out of Noelle's situation, and we're praying that God just continues to use as as vessels for His glory.  Thank you for continuing to pray with us to that end!!