PICU Day 16 ~ Full Update

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

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

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

~Sleep finally won out~

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

~These echocardiograms are not so bad!!~

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

~Sporting a new headband from Auntie Em~

~Early Morning Bottle~

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

PICU Day 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.

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.

Little Miss Houdini & Mother's Day Weekend

~Oxygen back in the nose...not a happy camper!!~

Well, the tiny person in our household is not very happy with her mother tonight.  We had an appointment two weeks ago at which we discovered that Noelle's oxygen levels were borderline, but they agreed to watch it for a bit longer and wait until we made it through her echocardiogram this past week.  Unfortunately, the echocardiogram revealed that her pulmonary hypertension has not yet resolved, and they are also seeing a possible defect which may or may not be an issue for her at some point.  We will meet with the cardiologist in early July to determine what {if any} course of action needs to be taken, and she will probably be followed periodically for an undetermined amount of time regardless of what they decide based on this particular ultrasound.  The defect is an issue that presented itself shortly after she was born; but then because so many other critical issues arose, this specific finding was forgotten until just recently.  The great news is that she has not been affected clinically by these results.  She has presented no symptoms or major signs of distress, and so it is possible that this is her own normal; however, because it is not "normal" across the board, it will take some special follow-up care through the coming months.  They do not feel that the defect and the pulmonary hypertension are related, so our hope is that as the hypertension continues to resolve that she will be able to come off the oxygen completely again.  In the meantime, they do not want her heart working extra to help her breathe, and so they determined at her appointment today that her oxygen saturation levels are required to be higher instead of the borderline which she has been maintaining.  She is not required to wear the cannula at all times but only while eating and sleeping {which is most of the time}.  The next few days will take some adapting once again as we are "attached," but we easily fell into a system tonight for which I am thankful.  However, Little Miss Houdini has other ideas.  After nearly a month of freedom, she is far from thrilled at the accessory which again adorns her face and has tried many things to rid herself of the bothersome thing including {but not limited to} the following actions: pitiful looks, vigorous shaking of the head, sneezing, spitting, rubbing, and the tried and true good, hard yank.  The coming weeks should be quite the adventure since it will be more than a month before the appointments which address these particular issues will be upon us.

~Saturday Morning Brunch~

 On a sweeter note, we enjoyed a wonderful Mother's Day weekend as a family and spent much time together in thankfulness to God for such a special day.  Tom treated me to breakfast at one of our favorite spots on Saturday, and we actually spent part of Sunday at the NICU with some of her NICU mommies.

~Mother/Daughter Picture...and so begins the endeavor to get good pictures with a baby...~

Noelle actually fit into her very first newborn outfit for the occasion as the style still accommodated her small size.  All other newborn clothes are currently too big, but we have them washed and ready for this growing girl!  She weighed 5 lbs. 2 oz. today and is growing well in all areas, and we are very excited to pass the 5 lb. mark and enter into a "normal" birth weight range.  We will continue to update on her progress and so appreciate the continued prayers for our little miracle.  Honestly, today is not considered a setback.  Clinically, she is doing very well with no changes, and so this extra support is simply to keep her body from burning calories in an area which is not necessary for her to do.  I've included some pictures of her little outfit on Mother's Day, and thank you once again for praying for our sweet girl and helping us make this past weekend possible.  We are truly blessed beyond measure.

~Mother's Day Outfit~

~Captured one smile!!~

~Ballet Slipper Tights~

~A shot of my complete outfit~

NICU Day 46 (January 22nd)

NICU Day 45 (January 21st)

It was another really good day in the NICU with Noelle.  We are getting spoiled with so many good days in a row, but we hope it continues.  Noelle was doing so well on the cannula this morning that they finally quit switching her between that and the CPAP and just left her on the cannula.  So far, she has continued to do really well with it!!  We even got to hold her tonight for a little while and thoroughly enjoyed watching her tiny face (I wore a mask and gown as I have never developed any other symptoms than the pressure in my ears, but we wanted to play it safe).  She absolutely loves her pacifier!!  It fills her mouth, but it definitely quiets her down when she starts to get a little fussy.  She has definitely starting to build up muscle tone as well.  Tonight, as she lay on her tummy, she pushed herself up and completely turned her head from one side to the other.  It is incredible to watch such a tiny baby do something like that!!  They decided to leave the PICC line in for one more day so we are really hoping that it does come out tomorrow.  She will also receive an echocardiogram tomorrow to double check the function of her heart since they stopped her heart medication today.  Other than that, we are just enjoying these good days with her and watching her grow.  God has been so gracious to us, and we thank Him for another day of Noelle's little life.

NICU Day 42 (January 18th)

Noelle had another really good day, and it is so nice to be able to report that so many days in a row!!  There still was not much going on today although we are told that very soon the doctors will be setting larger goals for her to reach since she has been doing well for so many days.  She weighed in this morning at 710 grams so just 2 grams shy of doubling her birth weight!!  She will probably drop again and go back and forth for a bit, but it's nice to see that 700 number.  In other words, 1 lb. 9 oz.!  They are almost finished either weaning her meds or transferring them to oral meds so that her PICC line can be removed.  We are pretty excited for that to come out.  A huge praise is that the echocardiogram results came back to today and revealed that her heart is doing significantly better!!  They were able to cut her heart medication in half and will discontinue it by the end of the week.  It's amazing what a different baby she is from two weeks ago today.  Two weeks ago we were faced with the prospect of possibly losing her, and today she is almost fully recovered from that issue and beginning to tackle so many others.  God has been so gracious to us, and we thank and praise Him for how He has worked in her tiny body.  Our hope and prayer is that she starts steadily growing at this point and that she can exceed the goals that the doctors set for her each day.  I am still not visiting the hospital although this cold still hasn't really onset as of yet.  Hopefully it gets better before getting worse.  Thank you so much for praying for all of us as a family.  It is amazing to see the evidence of those prayers right before our eyes as we watch Noelle, and we truly appreciate it.

***HUGE Praise: the "cold" turned out to be simply allergies***

NICU Day 37 (January 13th)

We had yet another really good day with Noelle.  She is a completely different baby than she was a week ago, and the doctors and nurses are just amazed!!  It is incredible to go from one end (your nurse crying as she says good bye to you for the evening after a really bad day) to the other end (everyone just smiling and happy about her progress), and we know that it is only of God that she has made a complete 180* turn this week.  Thank you for your persistent prayer before God's throne for her--God truly uses it in our lives to bring glory to Him and cause us to recognize our complete dependence on Him for every step of life.  They continued to wean her ventilator settings today since she is doing so well, and basically she is now just on the minimum.  They could be more aggressive about weaning her and extubating her, but since she is still so small, the doctor is not anxious to do that--everything is to be done in tiny baby steps with her.  So, she will probably sit at these settings until her oxygen level is down to 21% (this is room air / what we breathe).  She has been sitting anywhere between 25% and 35% consistently so she really doesn't have far to go for that!!  We don't want them to rush things, but we are really excited about her being extubated soon...just the fact that it is starting to be discussed is incredible, especially after last week!!  Her echocardiogram revealed that her heart is still continuing to improve.  They are going to continue her heart medication until it is more improved, but they were able to wean her nitric oxide more based on what they saw.  That is still a matter of prayer and yet a huge praise at the same time!!  We are so grateful for God's evident hand on her life.  We are really enjoying our time with her, and it is fun to start seeing her personality come to life.  She definitely knows what she likes and does not like!!  She seems to be a content baby as long as she is not being poked or prodded or held down in any way.  The nurses are amazed at how strongly she pushes against them when they are trying to do a procedure on her!!  I hate to see her crying and pushing against them, and yet I am thankful that she isn't just lying there and being apathetic about it.  On the other hand, she is really responsive and loves to hold and squeeze our fingers or follow our voices with her eyes--so sweet to watch.  She also has made it clear that she prefers to sleep on her tummy as opposed to her back, and she likes her back to be rubbed as well.  These seem to be such little things in one sense, and yet it is fun to see some of these traits that we know will be evident for the rest of her life.  We continue to thank God for our tiny miracle and praise Him for what He has done and what we have faith He will continue to do.

NICU Day 36 (January 12th)

~Tom truly holding Noelle for the first time~

Noelle turned 5 weeks old today...I can hardly believe it!!  She was
doing well enough that Tom was able to hold her for the first time
(Kanga Care) for an hour this evening.  An hour has never gone by so
fast!  They continued to wean her ventilator settings today (slightly)
as she was responding well to that, so that is a huge praise.  We're
hoping that she can come off of that machine within the next week or so
and be extubated and move to a CPAP machine.  I can't wait to see her
little mouth!!  I'm also looking forward to her being more
comfortable--she is moving so much more these days that it often affects
the position of her tube and bothers her.  She weighed in tonight at 1
lb. 7 oz. so we're excited to see progress there as well.  It is already
hard to imagine how tiny she was when she was born.   She is still so
small and yet she is very close to doubling her birth weight.  She will
receive an echocardiogram tomorrow so we're looking forward to seeing
how her heart is doing at this point.  Other than that, there is not
much to report (which is a good thing!).  As always, thank you for

praying!!

NICU Day 35 (January 11th)

God was very gracious in giving us another good day with Noelle.  She actually came off her jet ventilator today and is now on a conventional one.  Hopefully she can stay off this time and continue weaning down until she is breathing completely on her own.  Typically they go from the ventilator to a CPAP machine so we are hoping that can happen soon.  She did not gain any weight but she did not lose either, and they increased her feeds once again so hopefully that will help her continue to gain weight.  She really is starting to look and act like a normal term baby--which is fun to watch.  Today she was even a little fussy (although we cannot actually hear her crying with the tube down her throat, we can see her little face all screwed up and her mouth wide open when she is crying), but mommy was able to settle her down by rubbing her back or patting her on her little diaper.  As far as her heart, they are planning on repeating another echocardiogram on Friday so we are praying that continues to show improvement as well.  For us, it is taking some time to figure out a new "normal" schedule.  With so many ups and downs the last couple of weeks, this is the first week for us to really get back to some sense of reality at home...bills, laundry, etc...all the stuff that does not stop just because your life seems to be on hold for the moment.  Plus, we are on the same schedule as any other family with a term baby which they are nursing, and that includes middle of the night "feedings" as well.  It is the one way we really can be involved with Noelle right now in contributing to her care. As always, thank you so much not only for praying but for letting us know that you are praying...it's an incredible encouragement to our hearts.

NICU Day 34 (January 10th)

Today was very similar to yesterday and there were not many changes made in Noelle's care.  They did increase her feeds again as she is tolerating them very well at this time, and she has put on some weight.  She weighed in at 610 grams or 1 lb. 5 oz.  We received the results back on her echocardiogram and they showed very slight improvement with her heart but nothing significant.  The left side seems to be working well, but the function of the right side is still poor.  The doctors think it is going to take some time for this to be corrected since the hypertension was/is so severe.  So that is our main prayer request....that her heart will continue to heal and be able to function at full capacity very soon.  They will repeat the echocardiogram again in a few days to check the progress.  Other than that, she seems to be feeling much better than even the last couple of days.  She was more active today than ever and was very responsive...especially when she was awake.  It's so fun to see her respond to us talking to her and touching her...especially since we cannot hold her right now.  We truly appreciate all your prayers and are thankful to report yet another day of God's gracious goodness to us.

NICU Day 33 (January 9th)

We are thanking God for yet another pretty uneventful day with Noelle.  She was able to rest and just take it easy for most of the day.  They did do the echocardiogram, but we do not yet have the results back.  Hopefully we will learn tomorrow that the pulmonary hypertension is getting better.  Clinically, she is doing very well.  They were able to wean her ventilator settings even more today and she sat between 35% and 40% oxygen for most of the day.  She did lose some weight again, so our prayer is that she will really start gaining weight and growing.  She should have more than doubled her weight by now since she is 4 1/2 weeks old, but she has had too many setbacks for her body to be able to do this.  Hopefully as other things get better, her body will respond to the milk correctly and gain weight and grow.  We continue to pray for her heart as well that it will grow stronger and constrict better.  She is currently on medication to help this, so our prayer is that once the hypertension starts getting better and they wean her medication that her heart will continue doing well on its own.  Lord willing, we are looking forward to more "uneventful" days up ahead!!

NICU Day 32 (January 8th)

Noelle is one month old today!!  Some days have been easy, others excruciating, and yet overall the time has gone by incredibly fast.  The NICU is quickly starting to feel like our second home...especially as we really get to know the nurses and other staff that take care of Noelle all the time.  The gratitude in your heart cannot be compared for those who take care of your child in a way that you cannot during that time.  We're so very very thankful for the doctors and nurses who care for her.   Most of them come and check on her when they are working their shift--even if they do not have her themselves that day.  We're allowed to call anytime, day or night to check on her when we are not up there, and we can visit anytime day or night--no restrictions.  So we definitely feel like we live there since we spend more waking hours there than we do anywhere else.  It can be stressful at times (okay, a lot of times!!), but at the same time it's such a comfort for us to be there.  The events that led us to even deliver at that hospital were completely God orchestrated, and that makes it even easier to rest in where He has placed us during this time.  This past week was one of the most difficult yet, and still God was faithful to see us through.  Would He have been less faithful had the circumstances turned out differently?  Not at all.  However, we're thankful for His gracious goodness in our family and for the circumstances in which we now stand with Noelle.  She is still doing well overall--considering the events this past week.  They continued to wean her ventilator settings today, and they also started to wean the nitric oxide she is on for the pulmonary hypertension.  She has tolerated the new settings all day today so they will try more tomorrow.  They were also able to bump up her feeds today, so she is now receiving a whopping two teaspoons per day!!  They will continue to increase this as she tolerates it.  For her size, she should be receiving about 12 teaspoons a day, but they have to work up to this amount so that her stomach gets used to handling that amount and digesting it properly.  They will do another echocardiogram tomorrow to check the function of her heart, so we're hoping to see good progress with that.  Thank you for praising God along with us for how far she has come and continuing to pray along with us for the road she still has to travel. 

NICU Day 30 (January 6th)

We continued to see small improvements with Noelle throughout today.  They are all "slight" and yet so significant to us, and the doctors have told us that it will still be a long process...that no drastic changes will be seen in a short time.  Still, there was improvement, and when we left tonight, she was down to 62% with her oxygen.  She hasn't been that low since Tuesday!!  The echocardiogram revealed slight improvement in her heart function, but again...they did not expect drastic changes.  She still has severe pulmonary hypertension, but her clinical condition has not been this good in days.  She weighed in at 590 grams last night (they weigh her every night at midnight), and we have to keep in mind that this includes her diaper (tiny as it is), heplock, pic line, etc....  It is down quite a bit from a few days ago but this is actually good because she had been retaining quite a bit of fluid through this whole process and is finally getting rid of all of it.  We continue to take it one day at a time, and the medical team will do everything in tiny baby steps with her--nothing gets changed suddenly or aggressively in her situation at this point.  She is also still sedated pretty well although she still is responsive and moving...just not alert and awake.  They need her just to rest so that her heart can recover without her fighting and pulling strength from it.  We thank you from the bottom of our hearts for your prayer and your continued prayer.  We're so thankful for the loving care God demonstrates to us through the body of Christ. 

Quick Update

Noelle just turned 29 days old, and it looks as if she is turning the corner.  Only time will tell, but she started doing better last night, and is satting better with her oxygen saturation. They actually were able to start weaning her, and she is down to about 85% on her oxygen, so that is a good sign.  They will do an echocardiogram today to see her heart function and determine if it is responding, but clinically they are already seeing good signs.  As the doctor put it this morning, "the last two days we were headed downhill, and now it seems we are heading back up."  They still say it will be some time before she is fully recovered from this particular issue, but everyone is very encouraged at what they are seeing.  Thank you for continuing to pray!!

NICU Day 29 (January 5th)

Noelle turned 4 weeks old today, and I wish we could be more excited about that and not be facing what we are currently.  Nothing really has changed since the last update.  She is somewhat stable at this point and had an okay afternoon without desatting.  About 5:00PM she started struggling with her oxygen saturation again so they suctioned her, moved her position and adjusted her pressures.  It helped some, but she still is sitting just under where she should be with her saturation, so the alarm is constantly beeping on the monitor right now.  They have started her on a different medication to hopefully help her heart constrict better, and they will check the echocardiogram tomorrow to see if she is responding at all to the treatment.  For those who have mentioned it or asked, we do have a little recorder in her isolette (thanks to our Flock from our church) on which we recorded ourselves singing to her, reading to her and praying with her, so we push play on it and the nurses do as well every so often so that she hears our voices even when we are not there.  It's down to a matter of waiting right now...waiting to see how her body responds to the treatment; waiting to see how God chooses to work in and through this situation.  I wish we could respond to each person individually and thank you for your prayers--you will never know the encouragement it is to our hearts.  Thank you.

NICU Day 27 (January 3rd)

We are thanking God for another good day with Noelle.  She was quite opinionated today and was letting everyone know that she wanted to be left alone!!  They think it's a good sign that she is feeling better while on the other hand, it is giving us a glimpse of what we're in for!!  We'll take it though!!  The echocardiogram revealed that she had a very small PDA (opening in her ductus); however, they did not hear a heart murmur today so they think it may have closed off and will check again in a couple of weeks to confirm it...HUGE praise!!!  She gained again and weighs 610 grams although they believe she will drop some of this as she is retaining fluid right now.  But, she is looking bigger and is not overly puffy so they think some of it is actual weight gain along with the fluid, so hopefully when she starts feeding again on Saturday we will really start seeing those numbers climb.  Overall, it was an uneventful day (and we love those!!).  The main goal of the doctors right now is to get her weaned off the ventilator.  It's important they do this soon as the longer she is on it the more likely she is to get lung disease.  Thank you so much for praying for our little girl!!  I hope we can report another good day to you tomorrow.

NICU Day 26 (January 2nd)

Today was an evidence of all the prayers for Noelle.  She is very stable and had a great day, for which we are very thankful.  She had the echocardiogram today so we should hopefully know for certain tomorrow whether or not the ductus is closed.  The tech did not see it on the ultrasound today, so the doctor wants the cardiologist to review it to be certain.  Clinically, her stats show improvement, and they are not sure if that is due to the ductus or the antibiotics fighting off an infection.  Either way, we are grateful.  She had a "lab holiday" today which means that she was stable enough for them to "leave her alone" and not get blood work for the entire day.  We especially love this because it means she is not getting stuck.  She was able to be weaned on her ventilator settings a little more today which was another great sign.  The longer she is on the ventilator, the more potential there is for lung disease/damage so the sooner she can get off of it, the better.  We know we still have many days ahead and the roller coaster is not finished yet, but we are thankful that we rest in the hands of a loving and gracious God who is guiding us each step of the way and who gives us these encouraging days amidst the ups and downs.  Thank you so much for praying for us.

NICU Day 25 (January 1st)

Noelle said "Happy New Year" to us with a much better day than yesterday!!  Her nurse this afternoon even made a comment on how well the afternoon went with her stats and attributed it to prayer.  She sees us praying with Noelle at different times and has heard us talk about how many people are praying for her, and it was a testimony back to us to see her recognize that prayer was playing such a huge part in Noelle's status.  It's just another reminder to us that people are watching even when we don't realize it.  It's easy to get caught up in our situation and become self focused with what is going with us right now, but God was just reminding us once again that this is still about Him, and all the glory needs to go to Him.  Noelle received her last dose of Indocin today and will receive another echocardiogram tomorrow to see if it has affected the ductus at all.  We are praying hard that it is working.  If it doesn't work, they may try one more round of Indocin; otherwise we have to consider the surgery which involves transferring to the children's hospital, a new team of doctors, not to mention the procedure itself.  If it happens, then we know that God has a reason for us to be there, but humanly we are praying that it doesn't come to that.  Other than waiting for those results, there is not much new to report.  Her stats did not swing nearly as much today, and she stayed around 50% oxygen saturation today (give or take some) which is MUCH better than the 100% she was at for a while yesterday.  So thank you for your continued prayers, and we hope to report good news on her ductus tomorrow.  Happy New Year!!!