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.

Heart Catheterization Outcome

We will post a full update with tonight's end of the day post, but Noelle came through the procedure pretty well.  There were a few unexpected issues with her ventilation during the procedure, but the outcome was very positive overall.  The most concerning issues with the supposed abnormalities of her heart proved to be false; and while her heart anatomy is a-typical, it still has correct function and still falls within a normal realm.  We are thanking God for the developments today and the findings of this test, and cannot thank you enough for your prayers.  More details will follow in the final post tonight.

Heart Catheterization Update

~Last minute snuggles with Daddy~

~Ready to go...~

We had a very crazy morning and will provide more details in our post at the end of the day, but the short story is that we proceeded with the heart catheterization today, and Noelle was just taken down for the procedure.  The Lord also provided further confirmation that we had made the right decision as Boston called right as we met with the cardiologist and stated that they would be following the exact same course of treatment and would not recommend a transfer at this point in time.  We have been read the list of risks for this procedure from minor irritations to death; but as Tom prayed for Noelle before she was taken, we are thankful that she rests in God's hands.

~Sweet, Oblivious Baby Girl~

This will take some time, so we will update this evening after she is settled back into her room and the cardiologist meets with us to provide the results.  Thank you so much for praying for our sweet girl through this process!!

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 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.