Giving Thanks Challenge ~ {Day #15}

Thanksgiving Challenge ~ Day #15

Topic: Noelle
Title: A Much Improved Health Report

{If you are new to this challenge, you can catch up on the details here, and please feel free to join along at any time...}

I have been blessed to experience very few health challenges in my life; and the few things I encountered along the way have all been manageable with very little medical intervention.  And although I come from a family full of medical personnel, we all seem to do our best to pursue a more "natural" route and avoid medicines and the doctors' offices as much as possible.   So this year has been one of much change, especially in the way we have mentally handled things.  Noelle's severe health issues and compromised immune system have never afforded us the option to allow things to run their natural course, as this choice would have taken her life more than once.  So while I look forward to the day we begin eliminating medications and crossing issues of the list, in the meantime I am very grateful for the medical intervention we have received with so many doctors and medications and treatments made available to her.  This has been a big week for us, not simply because we had so many appointments, but because these were very crucial follow up visits after giving her body some time to heal from her last bout with pulmonary hypertension and the long hospital stay.  We expected some good news, based on her clinical condition we were seeing at home; but I think we were still surprised at the level to which she had improved.  We could spend a full day being thankful for each one of these following items:

1.  Noelle's pulmonary hypertension is greatly reduced, and her heart is demonstrating normal function once again.
2.  She is doing so well with her saturation levels, she is now allowed to be sans oxygen during her wake times (she still wears it while sleeping only).
3.  We will be eliminating one of her medications within the next couple of weeks.
4.  She has shown good overall growth in the last three months.  They did increase her calories to help her continued growth, which has slowed down; but her long term growth is still looking great.
5.  Her plagiocephaly has improved immensely, and it appears that she is in her final eight week stretch of wearing her helmet.

~Left Side: Noelle's flattened head, 4 months ago~ ~Right Side: Noelle's head this week...almost completely round!~

The summary is that her overall health report is very much improved, and her entire medical team is extremely pleased with her progress.  So although it has been a full and very busy week, the subsequent good news from each doctor has given us much encouragement and yet another reason to be ever thankful.

Giving Thanks Challenge ~ {Day #9}

Thanksgiving Challenge ~ Day #9

Topic: Noelle
Title: Oxygen {as in the kind you get from a tank}

{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...}


Oxygen paraphernalia decorates our home these days as it fills corners and weaves its clear, thick tubing through the living room and down the hallway and into the bedroom, or wherever the little girl who is attached to the end of it happens to be.  A box-like machine creates the oxygen Noelle needs on a constant basis, while a large back-up tank and small transport tanks sit on stand-by for emergency power outages or trips to the doctors' offices.  Although it requires some attention and maintenance once in a while or even some additional preparation time before going somewhere, it has become our normal way of life; and we rarely think twice about it anymore.  Well, most of the time.  There have been times in the past, especially when we first brought Noelle home, that I was much more eager to be rid of this inconvenience.  However, I was also grateful to have her off the ventilator and needing only a very low support of oxygen, so my emotions were somewhat mixed.  But that all changed drastically after her eighteen day stay in the hospital a few short months ago.  After weaning off the oxygen for a short time in April, she had begun a very slow and steady decline; and the lack of additional oxygen, although not the cause, became a contributor for aggravating her pulmonary hypertension flare-up.  Needless to say, between that and all of her sleep apnea and study issues, I have not been nearly so eager to wean her this time.  In fact, I have actually preferred that she have the support.  We are often asked when she will be completely sans oxygen, and our answer is the same as what the doctors say to us, "she will tell us."  It is a standard statement that we often hear with much of her care, meaning that they do not really know and can only watch her little body for signs of being ready to take the next steps.  So we wait {patiently, I hope}; and look forward to her appointments on Monday that may give us the signs of improvement necessary to take another step forward and begin the weaning process once again.  They will do it over a long, slow process this time; but I am grateful that Noelle is able to have this same breathing support at home that she once had in the hospital for so long.  Any amount of inconvenience is entirely worth the effort in order to have our sweet girl home with us at all times.  So while I have not always had this attitude on this particular aspect of Noelle's care, I can thank God that He has changed my heart and made me grateful for both the additional oxygen support for Noelle, as well as the natural oxygen He provides for us every moment of every single day. 

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

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

Update After Update...

This post will include updates on Baby Shane, Baby Kara, and our own Baby Noelle...


Baby Shane

~Baby Shane with no ventilator tubes!~

~Bright Eyed~

If you missed the original post, you can read about Shane here.  Scott shared this updated today: "Holding steady for now.  Extubated the other day, but failed w/o a cannula. Had trouble over the weekend detoxing, experiencing withdrawal from the pain meds {which we were told were 10x stronger than morphine}. Still can't hold him until the chest tube is out...may try clamping it tomorrow or the next day. Removal is contingent on him being able to sustain normal breathing for an extended period of time."  Please continue to pray for the Logan family as Scott started his new job this week a couple hours away from Philadelphia {where Shane is currently located}, and I am sure they have a lot of details to sort through, not only with Shane's situation but also with a new move across the state from their home in Reading.  If you would still like to help this family, donations can still be made through the website Standing with Shane to aid them with the daily expenses they are currently facing in this situation.  Most of all, thank you for your continued prayers!!


Baby Kara

~Kara & her nurse Sonya, as Kara leaves the hospital~

~Kara taking a bottle~

This sweet little miracle continues to amaze people with the strides she is taking each day.  If you missed the original post about her, you can read it here, and you can also catch up on her daily progress at her own Caring Bridge site, http://www.caringbridge.org/visit/karahuggins.  Kara now weighs just over 5lbs., is on only 25cc of oxygen, and was able to go home yesterday after 114 days in the NICU!!  

Please continue to pray for her and her parents {Kevin and Kim} as they adjust to life at home with Kara {and yet, without precious Kahlan} and still are uncertain what they will face down the road with Kara due to her original brain bleed.  So far, she is doing far better than anyone ever expected, and we thank God for this amazing miracle that continues to display His power and might to all that see and know of her. 

Baby Noelle

~This rice cereal is not bad...~

~...but I still like my fingers better!~

This little girl continues to keep me on my toes as we persist through multiple appointments and an overload of information!  I am constantly made more aware of the host of issues that so many children face and am ever grateful that God never gives us more than we can handle {or should I say, what HE can handle through us!}.  Noelle had a wonderful report after an echocardiogram and an appointment with her cardiologist on Monday.  The pulmonary hypertension is greatly reduced, and the function of her heart is much improved, to the point that her cardiologist does not have to repeat the echocardiogram or see her for three more months!!  This news was very encouraging to us since we take a lot of our cues from her medical team, and their urgency for her to be seen often tells us their level of concern {for there is never a lack, if it is necessary}.  She will still be on oxygen for quite some time since we will not even discuss weaning it until November {depending on how she is doing at that point}; but it has become a part of life for us, and I would truly rather she be on the oxygen than more medications to help her heart and lung issues.  Yesterday, she had a full check-up with her pediatrician, since we have created our own well-check schedule for Noelle on top of the constant monitoring she is already receiving, and she weighed 7lbs. 12.5oz. {and yes, we count every gram and half ounce!}.  I had expected her to pass 8lbs. by now, but because she is getting older  {even by her adjusted age of 5 1/2 months} we are uncertain as to how her growth rate will now happen.  Thankfully, everyone is looking at things over a long period, and she is doing pretty well by those standards.  We will just have a tiny girl on our hands for a very long time, and I am going to continue enjoying this very long baby stage and the small, newborn clothes.  Someday, I know I will wish she is this small again!!  In the meantime, Noelle is being allowed to try some "big girl" things such as sleeping through the night and eating rice cereal, both of which are going quite well.  I was actually a little disappointed at her lack of response to the rice cereal but should have expected it since she has had a variety of medications put into her mouth for months.  Hopefully, we will get some more animated reactions when she graduates to fruit and vegetables!  We are looking forward to getting through next week which includes appointments with her neonatologists and child developmental services {CDSA} along with a sleep study which will require an overnight stay in the hospital.  Our hope is that the results of this study will complete a picture for proper diagnosis of her many oxygen de-saturation episodes that happen while she is sleeping.  After all of that, it appears that we finally have a week free of appointments before they start again in September; and while the schedule truly does not bother us considering all we have been through, we are looking forward to the short break.  As always, thank you for sharing in our many joys and for continuing to pray for our little girl; and we look forward to sharing again how God continues to work in our lives.

Eight Months Old

~Sweet, 8 Month Old Girl~

Noelle turned 8 months old today, and the days seem to be over before they have even begun sometimes.  What a delight this tiny treasure is to us, and we thank God for each and every day with her.  The past few weeks have been very busy with follow up doctor appointments and various other life happenings; but amidst it all, this little girl continues to make good progress in her growth and weighed 7lbs. 11oz. at her appointment on Monday.  Again, I was hoping to reach the 8lb. mark by the time we came to this day; but she is very close, and I believe she will pass the 9lb. mark before her 9 month birthday and finally obtain {and then exceed} the average of 1lb./month.

~First Sunday at church as a family~

This past weekend was very special to us as Noelle's pulmonologist allowed us to venture out a bit more in the form of attending church on Sunday morning.  What an incredible joy it was for me to be able to participate in the service and hear the preaching of the Word along with the rest of the body of believers.  Months have passed since I have been able to attend due to our circumstances; and while online services and messages help tremendously, they do not quite compare with taking part in the service for yourself.  Tom was always willing to trade off with me, but with his commitments and the things I personally had to do to care for Noelle, we just could not make it work before now.  My heart was full; and the music, preaching, and fellowship were an incredible encouragement to my heart.  It was not without strict rules for us as parents {including, but not limited to: no nursery and absolutely no touching from others}; but while I was a little nervous about it, we were more excited than anything else to be able to attend for the first time as a family.  It means even more to us since we will be put on "lockdown" again in October and not allowed to take Noelle into public places again as we tread through the winter and spring months, attempting to avoid colds, pertussis, RSV, and flu viruses that could land us back in the hospital with potentially serious issues and major setbacks in her health and growth, since most anything she might catch would probably elevate her to a critical condition very quickly.  If we can make it through this upcoming season, the pulmonologist is very optimistic for our activities next summer.  However, we still must also clear some other major things with our cardiologist and are looking forward to our first follow up visit with him next week and hope to gain a care plan for how her pulmonary hypertension {PPHN} will be managed long term, now that we are home.  It takes quite the effort to coordinate a plan of attack for this little girl, and we continue to be amazed and thankful at the communication among all of the physicians, therapists, and other medical personnel that follow her.   Specifically, we ask prayer for her lungs as they continue to grow and heal.  This is not just a concern through the winter; but even now we have been unable to wean her any further on her oxygen, demonstrating that there is still much damage to overcome with both the chronic lung disease and the pulmonary hypertension combined.  Otherwise, she is clinically doing very well, and we praise God for her progress.  To celebrate her 8 month birthday, I am posting a few pictures from an album I created {which some of you have already seen} entitled, "A Series of Smiles."  This little girl smiles all the time and consequently generates many extra smiles from her mommy and daddy throughout the day.  Thank you for your continued prayers for our little miracle!!

~My Favorite!  I LOVE this smile!!~

~Happy Girl~

~Bright Eyes~

~"Huh?"~

~Squeals of delight!~

~LOVES to talk!!!~

Cruising Speed

~Styling in my new helmet~

~Tiny Feet~

Although I would not trade one single day we have had with our sweet girl, the days we are now experiencing with her are ones that I wish I could bottle and keep forever.  Before now, the days were precious to us and yet often excruciating at the same time.  We have had many good days along our journey, even through the NICU and PICU at various times; but every gram/ounce was a struggle and ground was often lost in those days.  Even once we reached the point of consistent, daily weight gain, we still never touched the goal of a "normal" baby, gaining approximately an ounce per day; and one of the major things we discovered through this past PICU journey was that her heart was working so hard against the pulmonary hypertension, it was stealing all of her extra growing calories and using them to fight her increasing lung and heart problems.

~I just don't know how these things happen, Mom!~

Now that those issues are under control with continuing treatment in the forms of oxygen and medications, those calories can again be used for growth; and we are finally seeing the kind of weight gain we have been anticipating since she originally came home from the NICU, thus reaching "cruising speed."

~Someone has found their thumb!~

Yesterday at one of her appointments, she weighed 7lbs. 7 oz., and the newborn clothes are finally fitting well as she fills out.  Her developmental skills also seem to be increasing and changing daily, and the sweet smiles and little "words" are beginning to create a sense of true normalcy as we still navigate the multiple ramifications of her micro-preemie birth.

~Sitting up like a big girl~

A minor issue was also addressed this past week as the back of her head has been becoming increasingly more flat and creating pressure points, so she was fitted with a helmet that she will wear for the next four to six months.  It does not seem to bother her much at all, and our happy baby continues to thrive now that she is back home in her own surroundings.

~Playing with Daddy at the Dr. Appt.~

~With Grandpa Aguiar~

Along with her appointments, the past several days have been busy with various activities and also brought visits with several people, including her Grandpa Aguiar, who was excited to hold her for the first time.  We are incredibly grateful for the family and church family that God has given to us through the years and are so blessed by their love and support, especially through this past year.
Today, as we celebrated two years of marriage together, I thanked God for the man He has given to me to stand by my side as we walk through life.  These past two years have been filled with adventure, learning, trials, and much growing as God has used this covenant to change and mold us to become more like Him.  Through it all, Tom has been lovingly constant and faithful, and I have seen him grow and change by leaps and bounds and am so grateful for this man whom God has chosen to lead our family.  My heart is also undergoing a transformation, and it amazes me how God continues to reveal sin and change me through my spouse.  Noelle has added a completely new dimension to this life journey, making the past year feel as long as ten years at some points; but God has been faithful, and we are ever grateful for the manner in which He has chosen to glorify Himself through her tiny life.  We enjoyed some sweet reminiscing as we celebrated today; and as we treasure our many memories together, we look forward to how God will continue to work in and through our lives to make Himself known and glorified to this world.  Thank you for your continued prayers for our family as we seek to live out the covenant which we signed on that precious day, only two years ago:

Because God has ordained our love and prepared us for each other, we desire to become husband and wife.  Together we will be vessels for His service in accordance with His plan, so that in all areas of our life, Christ will have the preeminence.  Ever honoring God's guidance by His Spirit through His Word, we will live our lives first unto God, even above each other and all others.  Through the pressures of the present and uncertainties of the future, we promise to be faithful, to be loving, to honor and cherish, to strengthen and encourage, to help and to comfort, endeavoring by the grace of God to always reflect Christ's relationship with His bride, the church, for as long as we both shall live.

PICU Day 11 ~ {July 5, 2012}

~To say we are "attached" is the understatement of the year (although we have actually been even more attached than this in the past!!).  It is difficult to see, but we are hooked to the monitor in the background (with multiple cords), the IV pole (with multiple lines), the oxygen pole and the nitric oxide...I stopped counting when I reached 10 lines.  Just one more thing I have learned not to take for granted....a completely unattached, cord/line/tube free baby.~

~Snuggling with Barbie~

Noelle had one of her best days in quite some time; and while it is still going to take some time to work through these issues and reach a point of stability at a level which she can safely go home, the improvement is marked, and we are thankful to see our little girl clearly feeling much better.  The medical team is moving slowly with the weaning process on her nitric oxide and milrinone in the hopes that she will be able to transition easily to her oral medications which she can continue at home.  This past week, it has begun to hit us what a serious issue we are facing with this pulmonary hypertension.  After her life and death episode with the hypertension in January, we faced a multitude of other issues; and the pulmonary hypertension migrated to the back of our minds with the assumption that it would always continue to get better with time.  We have since learned otherwise and now know that this will be a long and tedious haul that must be closely monitored and managed.  But as I discussed with a fellow NICU mom today, God gives us grace for the exact issues which our own micro-preemie baby faces.  It is funny that we look at our fellow micro-preemie families' circumstances and hope that our own micro-preemie does not go through their neighbors' issues, and they feel the same with us.  Of course, these babies often experience many of the same problems; but then again, they each follow their own course, making each family's journey individually unique.  The road is very difficult, and the tears flow often; but the joys are also tremendous, and God draws us ever closer to Him, teaching us many incredible lessons and broadening our perspective to dimensions never before imagined.  While I would never knowingly choose to walk this path again, I can honestly say that I would not trade this past year; and the little miracle in my arms and the many relationships we have formed are only some of the greatest blessings we now have as a result of this trial. 

Noelle had many visitors again today, including our long time family friend, Barbie, who flew out to see her for a few days, as well as two of her FMC nurses.  I love it that she still recognizes her FMC nurses' voices and responds so sweetly to them.  She also loves the snuggle time in those very familiar arms, and I look forward to the days when she can begin to understand all that they have done for her. 

~Cat Nap with Daddy~

The care plan continues to develop as Noelle responds to various treatments, but once she has weaned from the milrinone and nitric oxide, we can move out of the PICU to the step down cardiac unit and into a regular room (although we are perfectly content with the room we have...it is more than we ever imagined in a situation like this).  We are hopeful this will happen by next week, bringing us that much closer to going home again.  We are mentally preparing to be on oxygen full time, to be on a longer list of medications, and to be extremely limited in our outings for quite some time; but this is for a season of time that will pass, and the consequences of handling things otherwise are simply not worth it.  Thank you for praying through these days of waiting and trusting, and we look forward to seeing how God continues to grow and use this tiny girl for His glory.

PICU Day 9 ~ (July 3, 2012)

What a day!!  It all started in the wee hours of the morning as Noelle's peripheral IV came out and a new one had to be inserted.  The process took some time since she is a difficult stick, but they were able to obtain it in one try this time with a location on her head.  I have mixed emotions about the head IVs since I hate the location; but they usually last longer than the feet or hands, and she cannot rub it, pull it, kick it, swat it {you get the picture....she has lost more than one IV in these manners}.  I was happy she was stuck only once; but that was short lived when a few hours later, they discovered her head was bleeding out from the IV site.  Then began the long and tedious attempt for another IV insertion.  We have been through this process multiple times this week beginning in the ER on day one, when it took seven attempts to place the first IV.  Peripheral IVs last only so long and when they do not flush or they simply come out, another one must be placed; and because Noelle is such a difficult stick {due to so many IVs in the past as well as her small size}, this can mean multiple sticks before success is reached.  Counting the IV attempts, blood draws, heel sticks, and  toe sticks, I calculated that she has been stuck more than 50 times this past week; and by today, I decided that something better must be done and made my wishes clear to the medical staff {as graciously as possible, but with urgency and concerned, watery eyes}.  I know it is a necessary evil which we have endured probably a few hundred times through the last seven months {and that is not an exaggeration}, but she can only tolerate so much; and since our request for a PICC line was refused a few days ago, I found it ironic that it was brought up by the staff today as a solution to the problem of constantly sticking her.  {I will say that we have been very happy with her overall care this time around; but an extremely high standard was set at FMC, and our expectations are thus very high as well}.  One thing quickly led to another at this point, and when they informed me of some medication changes while rounding on Noelle a short while later, I started questioning the direction of her care plan.  Thankfully, the cardiologist was nearby, and they quickly called him over to explain their current decisions.  I believe a misunderstanding had taken place since we had never intended to halt the original care plan while seeking a second opinion from Boston, but that was the impression given.  So after a short discussion, we were told that Noelle's original procedure spot for today had opened up again, and we could proceed with the heart catheterization according to our original schedule, if we so desired.  We had hoped to hear from Boston just for confirmation, but Tom and I discussed it and felt strongly that we should not delay any further but proceed for the sake of Noelle's health and the need for a confirmed care plan.  Things again progressed quickly from this point and after enjoying some sweet smiles and snuggles with Noelle, the cardiologist arrived to discuss the procedure and sign the paperwork.  Just as he was arriving, the specialist from Boston called and confirmed that he felt the care plan was what they would do themselves and that the heart catheterization was the next move they would also take, but he did not see anything pressing that made him feel a transfer was necessary for them to do at this time.  We were especially thankful to God for this affirmation of our decision and proceeded with the cardiologist through the next steps.  It is daunting to listen to and discuss the process of such a procedure along with the possible risks and side effects, and it makes us even more thankful that Noelle ultimately never rests in the hands of her current medical team but in our great God who loves her even more than we do.  Not long afterwards, she was being wheeled away; and I was very grateful for some dear friends from our church who came to sit and visit with us as we waited.  They dropped everything they were doing and rushed to the hospital to be with us during a time that would otherwise have seemed to drag on continuously.  The procedure took some time, and they experienced some issues with her ventilation process that they did not expect and actually had not seen in other patients; but she still did well overall, and everyone was ultimately very pleased with the final results.  They were able to obtain a baseline measurement of the pulmonary pressures and are happy to say that she is no longer the severe case that she was upon arrival last week, but she is now a moderate case {although they still consider this very serious in the realm of pulmonary hypertension, it does display good improvement, for which we are grateful}.  The best news of all was that though her heart anatomy was a-typical and not what they normally see, everything still originates in the right locations and is directed correctly {although it does not take the expected path~surprise, surprise!!} and is within normal range and obviously normal for Noelle.  This came as a huge relief after the multiple issues through this past week.

~Puffy from the procedure but very alert and wondering "Why do these people keep sticking all these tubes down my throat and nose?!!"~

Noelle finally arrived back in the PICU and though she slept deeply for some time, she has already started waking up and showing some signs of a very alert state.  Based on what we have seen so far, there is a strong possibility she will come off the ventilator tomorrow, and we can begin the rest of the therapy needed to start managing her pulmonary hypertension and hopefully avoid another serious setback such as this one.  One other main concern tonight is that they believe she has developed a blood clot in one leg, have started treatment necessary to manage it, and are closely monitoring it at this point.  We are pretty tired after such a long week and an especially long day, but we are also incredibly grateful to God for the answers that He provided today through this procedure.  While we are just beginning to understand the seriousness of her pulmonary hypertension and the long road it will be, things could have been much much worse; and God graciously spared us during this time.  My little joy tonight?  They were able place a central line while she was under anesthesia this afternoon, and so peripheral IVs and blood sticks are unnecessary for a few days until they place a longer lasting PICC line (I wish we could steal you for that, Keri Prybolo!! {Keri was one of our nurse practitioners at FMC, and she placed Noelle's very first PICC line with one try when she was still less than 15oz.!!}).  No one will estimate how much longer they think we will be in the hospital, but all evidence shared indicates that it will still take some time.  Regardless, we just rejoice in the huge blessings God gave us today and thank and praise Him for all He has done.  Your participation through encouragement and prayers means so much and continues to point back to the great God we serve.

PICU Day 8 ~ (July 2, 2012)

~Daddy's Girl~

Today did not bring any new information as far as a transfer to Boston is concerned, but we still made headway with some communication and hope to have some feedback from them by late tomorrow.  One of Noelle's current cardiologists contacted a specialist in Boston that has expertise in pulmonary hypertension combined with cardiac issues, and he should be contacting us personally with some information as soon as he has the opportunity to review Noelle's records {well, the summary of them anyway...the actual records literally fill several large 3 ring binders!!}  I spoke with this specialist's office today a couple of times and was very encouraged by their helpful attitudes and the time they spent with me on the phone.

~Playing with Daddy~

Whether or not we transfer there, the second opinion is still valuable to us; and we are also thankful for the open attitude of the medical staff here with this request of ours in pursuit of the best care for our daughter.  They have been extremely understanding, and most of them have stated that they would do the exact same thing if they were in our position.  Because we are still waiting on these answers, the heart catheterization that was scheduled for tomorrow has been postponed {possibly to Thursday}.  No one wants to put Noelle through an extra procedure if Boston takes one look at her records and feels that they should perform the heart catheterization themselves.  However, there are still many unanswered questions without the information from the heart catheterization and extra hurdles to cross without a confirmed diagnosis, and so our hope and prayer is that we can do it here and gain some more information before making the next big decision with her care.

~Got it!!~

In the meantime, Noelle had the best night {last night} and the best day today that she has had in almost two weeks.  She was definitely feeling more like her normal self, and it was encouraging to see her so happy throughout the entire day.  It seems the nitric oxide is helping her lungs once again, and the current plan is to leave her on it until she gets through this next procedure.  God has been incredibly gracious to us and sent us much encouragement, especially through these past couple of days as many friends from our church and nurses from FMC have visited us.  I truly miss being able to attend church and enjoy fellowship with our brothers and sisters in Christ; but we also know that this is for a season and do enjoy the times we have with others in the meantime.  It is an incredible encouragement to our hearts; and in a strange sense, it gives us a sense of normalcy amidst the ever changing situations we are currently experiencing.  Our hearts never cease to be grateful for your love and prayers for us~it is a comfort and joy to us amidst the storm.

PICU Day 7 ~ (July 1, 2012)

Today was another day of waiting as we did not receive any answers yet in our request for information from Boston.  It appears it will take longer than we originally thought since some of her files are so large, they cannot be sent electronically but must be physically sent up to Boston.  We are seeking some information through a couple more avenues, but it is very possible that we will continue to proceed as originally planned with the heart catheterization on Tuesday and gain as much information as possible before making any further decisions.

~Listening to Aunt Donna singing sweet lullabies~

In the meantime, Noelle had a fairly good night last night with fewer desats than most other nights this week.  Today she was a social butterfly as several people from our church visited us {a huge encouragement to us!}, and her Aunt Donna from Forsyth came to see her and soak up some snuggles.  We have been so blessed to have the input of our FMC family through this process.  While Noelle no longer lives in the NICU, they still keep up with her and care for her as their own, and their advice holds a lot of weight with us as they love Noelle and have her best interest at heart.

~So comfy in such familiar arms~

We know that God will guide and direct us, showing us His desired path for us in this process; and if He chooses for us to make this transition to Boston, then He will pave the way and make things clear.  We will continue to keep everyone posted as we are informed of each new step in this process, and we truly appreciate your prayers for wisdom and guidance as we walk this path of so many unknowns {unknown to us, but thankfully not unknown to Him!!}.

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 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~