PICU Day 6 ~ (June 30, 2012)

Most of our time today was spent cuddling Noelle since she clearly was not feeling as well as she has the past couple of days.  She had a couple of periods in which she smiled and played with her toys, but those were very short lived.  Last night, she began to have her desatting episodes again, but this time they were not related to reflux; and as they became more frequent through the night, the medical team decided to put her back on the nitric oxide.  It is extremely concerning that she initially responds well to treatment but then declines once it is removed, and it points to signs that something is aggravating the pulmonary hypertension beyond what we can see at this point.  Over the past couple of days, many people have talked to us about Noelle's situation and several have advised us to get a second opinion or switch her care entirely to Boston Children's Hospital, which is #1 in the country for cardiac issues.  We had already requested that Boston be consulted after her heart catheterization on Tuesday; but with her setback today as well as some other strongly felt opinions from trusted medical friends/family, we moved up that request and spoke with the attending doctor tonight to get the process started as early as tomorrow morning.  At this point, we do not yet know if we will be transferring, but it is a strong possibility given the suspicions with her heart, the aggravation of the pulmonary hypertension, and the hint of heart surgery.  This decision is not without much prayer, much thought, and much advice from many others and does not come without a host of other ramifications for Noelle and our entire family.  Please pray for wisdom for us as this is weighing heavily on our hearts right now.  We desire the best possible care for Noelle, but ultimately that best care is wherever God chooses to place her.  That said, we cannot ignore the urgent and trusted advice from so many dear people who love Noelle and have her best interest in mind; and so we are moving forward and just trusting that God will clearly show us how, when, and where to proceed.  We do not know how long this process will take or what Boston will advise after reviewing her records, but we will continue to keep everyone posted as we are able.  Thank you so much for your love and support and your ever constant prayers.

PICU Day 5 ~(June 29, 2012)

Today was a fairly good day with a little less "trauma" for Noelle in that they only had to stick her twice in order to draw blood for labs (and thankfully, it did not clot today).  Her care team spent most of the day trying to figure out why she began to desat again last night (all through the night), but they had changed multiple factors with her feeds and oxygen levels, and I honestly believe it was all attributed to that.  People sometimes forget that they are still dealing with a micro preemie whose system is easily overloaded; but as each day passes, the PICU team gets more familiar with her and how she responds and is learning how to handle her various issues.  Her heart catheterization is scheduled for Tuesday, and we spent a large part of the day talking with several people, seeking advice on how to handle her medical care from here.  After much consideration and many suggestions, we will be gaining a second opinion if the results from this procedure point to a heart surgery.  We still are not sure whether or not we would move her care, and much of that would depend on exactly what issues she is facing; but we were encouraged to talk to so many today (some of whom have been through multiple heart issues with their children) and discover that we do have options, not only at Baptist but also in other areas of the country.  We are earnestly seeking God's guidance in this matter as it is intimidating at times to be responsible for such large health decisions for our little girl.  There is much more to consider than just a surgery; and things such as a transport, stress, and long term care also have to be weighed as we face upcoming decisions.  Our hope and prayer is that Tuesday's procedure will shed light on many questions and help us to be able to develop a care plan and make informed decisions for Noelle's future.  Tonight's post is a bit shorter as we are going to try and catch some rest, but we truly appreciate your continued prayers and hope to report an uneventful weekend with lots of smile pictures attached!!

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~

PICU Day 3 ~ (June 27, 2012)

~Exhausted Little Girl~

While today was not an unsuccessful day, it was not a day of progression as we had hoped.  Noelle is still in the PICU; and at this point, we are unsure as to when she will transfer to the step down cardiac unit.  The attending physician for the PICU expects us to be here through the weekend, and the cardiologist seemed to indicate that we will be in the hospital for some time, even once we transfer to the step down unit.  There are still many questions right now and even more seem to be raised as we continue to go along in this process.  Another echocardiogram was performed today, and they spent approximately 3 hours scanning, evaluating, and taking multiple pictures for further review.  We should get a full report tomorrow, but the early report was that the right side of her heart is still not functioning well.  They are increasing her oral medication to help this, and hopefully she will respond accordingly.  A heart catheterization has been mentioned as the next possible procedure that will be done in order to measure the pulmonary hypertension level, so we are mentally preparing for her to be ventilated again for a short time as they will put her to sleep while they perform it.  She finally began to truly sleep again today, for which we are extremely grateful. Any time she has gone through highly stressful instances, she has been overstimulated to the point of extreme exhaustion.  Over the course of Monday afternoon through this morning, she had "slept" {it was not usually restful sleep} a total of approximately 12 hours; and for a baby that typically sleeps 16+ hours a day, it was beginning to take a huge toll.  However, along with that deep sleep today, she began experiencing some significant desaturations, and they are still trying to determine if these are due to reflux issues or if this is still a heart issue.  Consequently, they raised her oxygen flow once again {which they had weaned yesterday} and decided to insert an ng tube into her intestines to continue feeding her.  This should eliminate the reflux as they bypass the stomach and allow them to determine if the reflux is the actual issue or if they need to start her back on the milrinone medication for her heart function.  We are thankful that she can rest through the night and not be bothered with burning calories and losing sleep while eating her bottles and hope that this results in some marked improvement tomorrow, at least in her disposition.  You will notice in the pictures that her poor little fontanelle is quite sunken, and this is due to the diuretics they have been giving her to rid the fluid around her heart and in her lungs.  Thankfully, her lungs looked more clear on the x-ray today so they were able to decrease the dosage of the diuretics and hope her little head gets back to normal soon.

~Playing with her favorite toy~

I was encouraged to receive two smiles today...the first in a week!!  Those little smiles made my day, and she even spent a little time tonight playing with her favorite toy frog.  Those little moments of "normalcy" help tremendously as we wade through the serious issues.  Ultimately, through the numerous details and the host of unknowns, we continue to rest in God's hands and His sovereign plan as He reveals it moment by moment. Thank you for your fervent prayers for our sweet girl, and we look forward to what tomorrow will bring.

PICU Days 1 & 2 in Photos with Update

~Settling into our PICU room late Monday evening~

~A very big bed for a very little person~

~Trying to get comfortable~

~Not too sure about all this!!~

~Nice, large room {we can stay with her at all times!!}~

~Finally being allowed to eat again this morning~

~Just finished the last bottle for today & starting to act more like herself~

Noelle had an encouraging day overall today, and they have already been able to take some great strides medically.  They turned off her nitric oxide and transferred her to the oral drug, and she seems to be tolerating it well so far.  They have also been able to wean her oxygen today, although she is still on a high flow rate and still has some distance to go before transferring back to the lower rate cannula she was using at home.  The medical team is hopeful that she will be able to transfer out of the PICU tomorrow into the step down cardiac unit, where they will continue to monitor her heart as she adjusts to the new medications before coming home.  We still do not yet know what we are facing long term, but no one seems to know at this point; and we will just have to wait and see how her body continues to respond to the current treatment.   We will update again tomorrow, hopefully with some good news of progress.  As always, thank you for your love and support and most of all, your prayers.

Most Recent Happenings / PICU Days 1 & 2 ~ (June 25th & 26th, 2012)

We will continue to post as we are able and will add pictures when possible, but Noelle has been admitted once again to Baptist as of yesterday.  She had not been herself for a few days, and I thought it was possibly due to her thyroid levels which we were having checked Monday morning.  Those levels actually came back too high {instead of too low, which I had wrongly suspected}, so yesterday afternoon I took Noelle to her pediatrician to address the lack of eating and constant drowsiness she was displaying.  However, when I pulled her out of her car seat at the pediatrician's office, she was a dusky purple color, fussing, and just not looking well.  They quickly grabbed some oxygen and a pulse oximeter {which proved her levels were very low} and called 911.  Within minutes, we were at the ED and being rushed through stabilization procedures and the admission process; and after an x-ray and echocardiogram, it was determined that her pulmonary hypertension is elevated once again and has caused the right side of her heart to fail.  This has also started leading to other issues such as swelling of her heart, slight depression of her left ventricle, fluid around her heart, and liver enlargement as well.   They do believe we caught it in the early stages, but it is unclear at this point how things will progress.  We are thankful that she has responded well to the treatment thus far (the same treatment she was given in January for this issue: milrinone and nitric oxide), and they are working on changing over this treatment to oral medications so that she can be managed at home after a few days and followed as an outpatient.  The large concern is that they are not sure what set things in motion for this to happen again, and this issue could go either way over time.  It could continue to get better and heal with time or it could worsen again and eventually need further intervention to keep her heart functioning.  Many things have been presented, but there are so many "what ifs" that we are just focusing on what we know and how she is currently responding in the moment.  She was acting more like her old self last night and this morning, although this afternoon she has reverted somewhat again; but we believe that is due to her large lack of sleep through the past 24 hours more than anything else.  Please pray for rest and strength...mostly for Noelle but for all of us, as well as continued wisdom for the doctors as they seek to understand what is happening, why it is happening, and how to properly treat what is happening.  Amidst the chaos, drama, and the multiple unknowns, there is still immense peace; and we know that God is continuing to shape and mold His plan for our little family.  Some lyrics from an old song kept floating through my head and were a comfort last night....

There is peace, there is calm in the midst of the storm,

The Lord is there beside me.

He gives grace, He gives power, He gives strength for each hour...

...

There is joy in my soul, for the Lord has control, 

And beneath are His everlasting arms.

Thank you for your faithful, constant prayers.  We will continue to update as we are able and as we have access to the internet.

Six Months Old

~Yeah for 6 months old!!~

The days pass so quickly these days as we settle into life at home and attempt to develop a consistent routine with our little girl.  You would think that after two months, we might have this down by now; but I think {I hope!} every new set of parents goes through this during that first year with a new baby.  The adjustments have been compounded with the barrage of appointments those first several weeks; but with that part starting to wane, life is seemingly more calm these days, and Noelle especially seems to like the predictability of her days.  She actually seems to be turning into quite the little homebody!  While I have attempted to keep various noises going throughout the day and night so that she does not become accustomed to pure silence, there is no getting around the fact that our home is a fairly peaceful environment.  Music, cooking shows, talking, fans, the washing machine and dryer, and even the vacuum do not make up for the alarms, multitude of voices, various machines and other babies' cries which she heard in the NICU at any given moment {often, all at the same time!}; and now that she has had consecutive days of being at home, she really seems to like and prefer her own space.  That is not to say that she still does not do well when we are out with her.  She still does quite well as long as we are not in places which are overstimulating for her {preemies overstimulate extremely easily, even months after discharge from the NICU}, and so we are slowly and carefully venturing out into uncrowded places so that we can not only accomplish a few things but so that she can also begin to slowly build her own immunities.

Noelle turned 6 months old this past week and weighed 5lbs. 11oz. as of Sunday.  I felt a small twinge of disappointment when I saw the number on the scale as I was hoping she might reach 6lbs by her six month birthday and thus average a pound a month.  However, she is very close and has had good, consistent and proportional growth, so I truly cannot complain.  It does mean that we will probably not be making Father's Day our first Sunday at church but just knowing that she will be home with us for Father's Day is gift enough.  This little girl becomes more and more precious to us each day, and we are loving every minute of watching her grow and change.  The pictures that follow will better {and more interestingly} show the changes in this sweet little miracle God has given to us.  Her expressions are priceless!!  As always, we continue to appreciate your fervent prayers for this blessing of which God has allowed us to be stewards.

 Bath time is still the most exciting part of the day...

~Goofy Tongue Grin~

~Really?  You want ANOTHER smile?~

~Well, okay!!~

~You can have as many as you like!~

~Bath time is the best!~

~Perspective~

~Sparkling Eyes~

~Bath time brings out the talker in me!~

 These pictures were taken on her official 6 month birthday...

~I LOVE my frog!!~

~I found my hands....they absolutely fascinate me!!~

~I can't figure out why he doesn't talk back....~

 We always love visiting Gigi and G'Pa....

~Snuggling with Gigi and showing off my pants from Aunt Barbie~

~I love G'pa's noises~

~Visiting with G'pa~

~Talking all about my day~

~Oh but wait...Daddy has the camera???!!~

~...I must say hello...~

~...and flash a cheesy grin!!~