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.

Noelle's Latest Trick

Noelle has taken up "silent talking" and is consequently generating much laughter in this household.  Aunt Barbie caught her on camera last week during her visit, so we thought we would share this little video to hopefully brighten your Monday afternoon.  We appreciate your continued prayers as we have the sleep study on Wednesday night and hope to have final results by early next week.  Also, do not forget The Book project as we moved up the entry deadline to allow compilation time before her birthday arrives.  Thank you to those who have begun to contribute and to you who are still planning to write ~ we truly appreciate it!!  Have a wonderful Monday and a great week!!

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~

Lock Down Commences

~I finally graduated to a "big girl" towel!!~

We officially began lock down today, although we actually began limiting our outings a week ago to those only absolutely necessary.  While we have been careful since we last discharged from the hospital, we have been allowed certain activities such as church attendance, grocery shopping (during week days at non-busy times), and similar things that did not involve large crowds.  With the arrival of October and the cooler weather, Noelle is now allowed to go to doctor appointments only, and we must keep her home the rest of the time for the next six months.  When they first explained this to me a few months ago, I was certainly willing to do it; but I was also dreading it a bit.  Six months seemed like a very long time, especially since I had been keeping her home ever since we discharged from the NICU; and I knew that even once the six months was completed, we would have to slowly begin introducing public activities again and could not just immediately resume a "normal" life.  However, as this time approached, I began to look forward to it and am actually thankful that it has arrived.  It will bring a certain amount of logistical challenges; but while I know that her health is ultimately in God's sovereign hands, it just feels more safe to be confined to home during this season when so many people become sick.  We are very hopeful that if she can do well (without setbacks) through this season, then next summer will be a different story altogether.  We have not forgotten that we still need to complete the sleep study and demonstrate improvement; but after talking with more members of her medical team and finding out further details of this past sleep study, we truly believe that she will not be receiving the tracheotomy that the ENT specialist thought she needed.  Improvement in her oxygen saturation levels has also continued in the past several weeks, and I am very thankful for my mom who has now moved here and is a tremendous help and blessing as we seek to do everything physically possible to aid Noelle's reflux issues (and consequently affect the upcoming sleep study results).  The nerves will still come as we approach that moment, but we continue to find great comfort in the fact that God has already planned our coming days.  As we close September and begin this new season, we had many blessings this past month of which I will share a few.  Thank you for your many continued prayers for our sweet miracle baby!!

~I just rolled over again!!~

September Blessings

~ Noelle began to roll over

~ We packed up nearly all the newborn clothes and began the transition to 3 month clothes

~ We have heard a couple of giggles now, and a full laugh is just under the surface

~ Noelle graduated from speech therapy 

~My mom (Noelle's snuggle buddy) now lives here

~Aunt Julie, Gigi, and G-Pa all came to visit

....and my very favorite:

~We reached the point of being at home for as many days as we have spent in the hospital this year!!!

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!!~

"She Looks Like A Science Experiment!!"

~What in the world did you do to me?!!!~

~Finally Asleep~

~Early Morning After A Restless Night~

~This really was not so fun, Mommy!!~

"She looks like a science experiment!" was the text I sent to Tom on the night of Noelle's sleep study at the hospital after the staff was finished gluing and taping sensors, wires, and tubes all over her head and face.  She tolerated it fairly well, although I did "chicken out" and allowed her to forgo wearing the helmet on top of all the various items attached to her.  Thankfully, we did not have to wait long to discover the results, but we were very surprised at what they discovered.  The pulmonologist called late the next day to tell us that Noelle had completely failed the sleep study, and they had determined that she had both obstructive and central sleep apnea.  They prefer that babies fall within a "normal" range of 1 to 10 episodes per hour, although even one episode gives them cause for concern.  Noelle averaged 39.7 episodes per hour, which has caused everyone to start jumping into action through this past week.  We were quickly scheduled to see an ENT specialist this week to determine if her adenoids and tonsils might be an issue, and everyone was hoping for an "easy fix."  However, babies this young usually do not have such issues, and Noelle (for once in her life) has fallen into that normal category with no tonsil or adenoid issues at this time.  Because of this, the treatment plan becomes much more complicated and drastic, and her medical team is currently discussing options and developing a new care plan for addressing this serious issue.  I will refrain from getting into details on the possible treatment since they are incredibly numerous and serious, but we are earnestly praying right now for God to intervene in a way that would allow us to avoid drastic or severe treatment of this issue and are hopeful that with time and growth, it may resolve itself.  The medical team is currently weighing all the pros and cons to her current issues (such as pulmonary hypertension and chronic lung disease) and determining whether or not we have that time to watch and wait or if they need to aggressively treat this as soon as possible.  In the meantime, we are waiting for answers and just enjoying each moment with our sweet girl who is filling out and looking more and more like a term baby each day.  She now weighs approximately 8lbs. 6oz., and the doctors are incredibly pleased with the growth she has demonstrated since her last hospital stay.  Thank you, as always, for your fervent and faithful prayers for our little girl.  We do not take them for granted and will continue to update on this situation as we receive information ourselves.  Below are some pictures from the last couple of weeks of sweet life with Noelle....

~Carrots!!  Pretty Bland..My Cannula Is Better!.~

~Adores Her Daddy~

~Sweet, Tiny Hands in Daddy's Big Hand~

~Loves to Look Out the Window~

~Daddy is Fascinating!!~

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.