PICU Day 13 ~ {July 7, 2012}

~Playing with Barbie~

Today was another fairly uneventful day, and we spent the morning visiting with Barbie as she had to head back to Colorado this afternoon.  It was a very short visit; but we were very thankful to see her even for a short time, and Noelle enjoyed the extra playtime and snuggles she received from her.  She sweetly spoiled us while she was here and made sure we were taken care of well during her visit, and we cannot thank her enough for taking time out of her busy schedule to come be with us during this time.  It appears that we will be here for at least another week as they try to completely stabilize Noelle and regulate her on all her medications before she goes home.  The blood clot in her right leg is still an area of concern, and the doctors have been consulting amongst each other as well as with some other departments as to how to handle this issue in the best possible manner.  They discontinued the heparin drip yesterday and tried to transition her to baby aspirin; but this morning, her foot was cool again and the pulse could not be felt or heard by doppler. After much discussion amongst themselves, the attending PICU physician and a hematologist came and met with us to review the issue, family history, possible future risks, and the current planned course of action to treat with Lovenox.  Unfortunately, this means that Noelle gets a little shot in her tummy every 12 hours; so it is obviously not my favorite solution.

~Sweet Snuggles~

However, even if they put her back on heparin, it would require more sticks for lab results to manage the therapy levels in her blood; so that is not an ideal answer either.  We are just praying that God will resolve this issue within the next week so that we are not required to continue the shots at home (which I know I cannot do anyway...I will drive her somewhere twice a day to have someone else do it before I will do it myself!!).  Thankfully, they were able to doppler a pulse in her little foot this afternoon and tonight, so we are hoping it stays this time (they have been able to do it from time to time, but not consistently).  The good news is that she weaned off the nitric oxide last night and the milrinone this afternoon and has shown no signs of negative reactions as of yet.  We thank God for each hour that passes in which she seems to do better and better and hope we are truly on the path to going back home.  While tired and a little weary of living at the hospital, we are very grateful for the care she is receiving and do not want to take Noelle home any sooner than she is physically ready.  Her sweet smile helps carry us through these days, and we thank God for this precious little girl that we love so much.  Barbie took some family pictures on her own camera last night and actually captured a shot of all three of us smiling at once!!  I absolutely love this picture of Noelle, and it does my heart a world of good to see such happy expressions captured on that cute little face!!  Your prayers continue to be appreciated more than we can communicate in words.  Thank you.

~First "all looking & smiling" family picture~

PICU Day 12 ~ {July 6, 2012}

Today was a fairly uneventful day, and progress was made through weaning of the nitric oxide and the high flow nasal cannula.  Noelle should be completely off the nitric oxide by tomorrow morning, and she is currently on 2 liters through the regular nasal cannula, and we hope to continue to wean that before going home {we do not expect to wean completely off the oxygen but hope she is able to do well with less support than she is currently receiving}.  If she tolerates the absence of the nitric oxide, then the milrinone will be weaned through the weekend, and she can move out of the PICU.  She will then be monitored to be certain she is tolerating all of her medications well, and she will start taking her feeds by bottle again.  We will still be here for several days, but I think discharge may come sooner than everyone thought possible.  However, one day at a time; and for now, we are enjoying the little things we are able to do again to mimic her schedule at home when we have opportunity.  She enjoyed a partial bath tonight {we cannot submerge her since her heart catheter sites are still bandaged}, and we were even able to maneuver her various cords so that she could slip her arms through her little sleeper, partially wearing it and making her more comfortable for bed tonight.  I will post the rest of the day in a video and pictures.  Her poor little voice is so hoarse from the ventilator tube, but it makes her cry that much cuter to us!!  As always, thank you for your persistent prayers; and we hope to report more great progress tomorrow.

~Getting all the tubes & cords situated after the bath~

~Precious Smile actually caught on camera!!~

~Silly Face~

 ~Noelle telling us about her hospital stay~

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 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 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 Days 1 & 2 in Photos with Update

~Settling into our PICU room late Monday evening~

~A very big bed for a very little person~

~Trying to get comfortable~

~Not too sure about all this!!~

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

~Finally being allowed to eat again this morning~

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

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

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

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

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

The Lord is there beside me.

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

...

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

And beneath are His everlasting arms.

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

NICU Day 40 (January 16th)

As I type "Day 40" I can hardly even believe it has been that many days since Noelle was born.  Really?  So much has happened during that time, it's almost unbelievable.  We are still almost 5 1/2 weeks out from her original due date and even at that, she was measuring only about the size of a 22-23 week baby when she was born one day shy of 29 weeks.  Her nurse practitioner said today, "I came and looked at her today and couldn't believe how much she'd grown, and then I was even shocked that I was thinking that about a baby that currently weighs only 630 grams!!"  She did lose some weight and is down to about 1 lb. 6 oz. currently.  This is normal, but we are hoping that she starts packing on the ounces more quickly since she is starting to do so much better.  They weaned her off the nitric oxide completely today and are discussing moving her medications over to oral ones so that we can also get rid of her PICC line soon.  It's nice to see machines and lines disappear from her bedside!!  The big discussion is now is when to take her off the ventilator and try her on the CPAP machine.  We are excited for them to do it soon and yet at the same time do not want them to rush it if she isn't ready.  It looks as if it may happen this week though since she is on the lowest settings on her ventilator, and they can't wean her any more.  It looks like they will have to give her a little mask when they move to the CPAP because the smallest nose prong tube is still too big for her little nose!!  All in all, it still was a "boring" day, and we are so thankful to God for that.  Thank you for rejoicing and continually praying with us!!

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 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. 

Addendum to Day 28

They did confirm that she does have pulmonary hypertension. She is on nitric oxide to help, but as they told us tonight: some preemies pull through and others do not. It's a minute by minute/hour by hour "wait and see" right now. She rests (as always) in God's hands. We can't tell you how much we appreciate your prayers. Thank you.