Giving Thanks Challenge ~ (Days #23 ~ 28}

Thanksgiving Challenge ~ Days #23 ~ 27

Topic: Noelle

{If you are new to this challenge, you can catch up on the details here}



The past Thanksgiving week has been extremely busy, yet filled with much joy as we were able to spend time with our family {Day #23}.

~Noelle celebrating Thanksgiving in her outfit, handmade just for her with love by Auntie Em~

Because of all that has transpired since June, we were unsure if we would be able to travel and were also constrained by the health of everyone who would be surrounding us.  Flu shots had to be administered to all, good health had to be maintained, and other various guidelines followed {which is no easy task when you are trying to connect your family from five states}.  We cautiously prepared, keeping in touch with everyone planning to attend and always being ready to stay home and employ Plan B if it became necessary.  However, after a final check-up on Monday and knowing that one of my sisters is a PICU nurse and another family member is a Pediatric Intensivist, we were cleared to go as far as Noelle was concerned.

~We were unable to obtain a picture of the entire group, but we did get all the girls!~

Tuesday was our departure day; and by God's grace, we made it to that point with everyone having met the needed requirements.  We packed {and packed, and packed some more!} and began our drive {no flying for us for a long while yet, due to exposure} to my sister's home in Kentucky.  Along the way, we had the wonderful blessing of stopping at my grandparents home and capturing a five generation photograph {Day #24}, as my great grandmother was visiting them for the holiday. 

~Five Generations~

What a precious moment this was, and I am so grateful to have been able to spend time with my great grandma and snap these photos that we will cherish forever.  On Wednesday, we continued our drive to Kentucky; and while a little tired of the car seat at times, Noelle did extremely well on her first road trip.  Upon arrival, we were greeted with smiles of joy from loved ones who have long prayed and anticipated the moment of meeting our little miracle; and any fears of how the situation might be handled through the week were immediately quelled as everyone gave space and utilized the hand soap and hand sanitizer that were readily available throughout the house.  One of my favorite aspects of this trip was that Noelle was able to meet her sweet cousin {Day #25} on this trip.  Although she was supposed to be five weeks older and the first grandchild, Ellie is two months younger and now the second grandchild on our side of the family.  However, you would never know it to see the two of them together!

~Noelle & Ellie, standing side by side~

As we did a little candid photo shoot with them before leaving {after Purelling Ellie from head to toe...literally!}, we were certain that we could see a budding friendship destined to last for the rest of their lives {well, perhaps it was wishful thinking, but we will assume that to be true for now!}.

It was so enjoyable to spend the Thanksgiving holiday with our family, especially as we rejoiced in the little miracle we held in our arms.  We traveled home with full and thankful hearts, refreshed with the sweet fellowship we had shared throughout the week.  As we unpacked and settled back into our routine, I was reminded of how grateful I am for the layout of our apartment {Day #26}.  This may seem silly; but in our situation, it has significance.  While at my sister's, we were able to borrow Ellie's video monitor while Noelle took naps upstairs in the bedroom.  Had we not had that device, I would have been sitting in the hallway through all of her naps, making sure her oxygen saturation stayed level since the pulse oximeter alarm could not be heard downstairs.  However, at home, we have one level, and Noelle's cradle and monitors sit directly inside our bedroom and can be seen all the way down the hallway.  I can hear her and her alarms throughout the apartment, and I realized not only how convenient this has become for us, but also how comforting it is to know that she is just that close all through the day.  She is continuing to progress well, and although she is still gaining weight slowly {weighing 10 lbs. / 13 oz. today} and is somewhat behind in her gross motor skills, she is still moving forward, and we are enjoying every moment.  She is beginning to sit up {Day #27} with some support, and I think she may be doing it completely on her own by her birthday!

~Practicing Sitting Up~

Milestones such as this mean so much to us, as each one represents yet another aspect of God's grace in her growth and health.  Finally, as I perused pictures today for this post, I was reminded of yet another special blessing for which I am thankful: Noelle's eyesight {Day #28}.  Many of you remember that she received eye surgery for ROP in February, but what I have not mentioned on the blog {due to the events of June that followed shortly after her last eye appointment} is that although her last exam still showed positive results as far as the ROP was concerned, the opthamologist believed that she is going nearsighted and would need glasses by the time she is one year old.  Honestly, glasses are the least of our concern, since we are just grateful that she can see at all!  This diagnosis has yet to be confirmed until our appointment on December 10th; but after watching her closely through the last several months, I am not certain this will be the case.  She seems to be able to see across the room without difficulty, and this was confirmed by the following photo.  As her Uncle Nathan held her in one part of the kitchen during our Thanksgiving holiday, Noelle caught a glimpse of her daddy on the other side of the room, and her response was captured in this picture.  Need I say more?  To say we are grateful seems hardly enough...

~Smiling at Daddy across the room~

PICU Day 18 ~ Full Update

~Smiles after being told we were going home!!~

Today started like every other hospital day with the Lovenox shot at midnight, a bottle, a few hours of sleep, and then labs and another bottle at 4:00a.m.  I was especially anxious to get this particular set of labs over since they were planning on doing an arterial stick in the hopes of getting a more accurate reading for the blood gas.  The arterial sticks are more difficult than even the regular ones they take each day; and at Baptist, the nurses are not allowed to do them.  So a respiratory therapist came and tried once, failed, and they decided to simply do a regular blood draw from the vein.  Thankfully, we had a good nurse who had been able to do it in one try the previous night and again got it in one try this morning.  We were especially looking forward to these results since they would tell us the CO2 level in her blood and let us know whether or not we were on our way home.  Mid morning brought an x-ray, but this was different than all the other x-rays which we had had done at the bedside (with a machine they wheel around the hospital).  Instead they brought in a wheelchair with an attached oxygen tank, had me hold Noelle while seated in the chair, hooked Noelle up to the tank, and then took us up one floor to the radiology lab to have a fully detailed x-ray done.

~Final hospital snuggles with Daddy~

~Almost ready to go...~

Poor little Noelle did not know what to think when they strapped her to a board with her arms above her head and took pictures with her lying flat and then on her side (she was strapped to the board and her face was quite funny as she was "suspended").  Late morning, the medical team finally made their rounds and had three great things to report to us: 1. The CO2 level was still on the high side but was significantly better than the previous day, 2. The blood clot in her leg was completely gone and thus the Lovenox shots would not be required any longer, and 3. We were going home!!!  That news was music to our ears, but we could not rush out the door as there were reports and prescriptions and final procedures to complete.  The news of the blood clot was an extra special praise to us as it could have been quite serious and caused some damage, but it was also a praise since it meant we would not be required to continue those shots at home (which I was dreading, even though I would have figured out some way to deal with it...without doing it myself!).   It was also one less thing to concern us and to watch closely, amidst the many other issues

~A friendly reminder to well-meaning people~

for which we were already facing extra doctor appointments and close following.  The rest of the day was spent with the typical feeding schedule, vital signs, filling prescriptions, speaking with various specialists and other medical staff, visiting with a dear friend from church, getting discharge instructions, scheduling follow-up appointments, and packing up everything from our 2 1/2 week stay.   By the time we had done all of that, signed our discharge papers, made multiple trips to the car with our stuff, connected Noelle to our own portable oxygen tank, and situated her in her carseat, it was after 8:00p.m.; but we did not care since we were going to be going home!!  With some final snapshots and a few goodbyes, we were on our way; and walking through those hospital doors to the outside world felt like true freedom.  I had not stepped outside that facility in five days and had made it home only a few times during the entire 18 days, so I was especially looking forward to having my family all together in our own space once again, with no more midnight shots, no 4:00a.m. and 4:00p.m. labs, no more x-rays or ultrasounds, and so many other things.  The sleepless nights would continue~that is just part of being a parents; but we would still get more sleep than we did in the hospital, and it would certainly be more restful.  We made it home around 9:00p.m. and

~Fully enclosed & ready to ride~

~Ready to leave our room~

connected Noelle to her oxygen machine and pulse oximeter, unloaded our vehicles, fed her, and readied for our first night home.  It was an adjustment~mostly because the pulse oximeter decided to false alarm multiple times through the night.  However, Noelle rested very well without the usual interruptions she was used to experiencing, and the smile she gave me first thing the next morning melted my heart and made me so thankful to God for bringing us through this event in the manner that He did.  It was not without fears or struggles or tears; but it was also never without true peace, and the fears and struggles were dealt with best when left at His feet. 

~Sweet smiles after the first night home~

So now what?  We continue to make the adjustments of being home with a baby that is on oxygen, a monitor, and multiple medications while also making multiple trips a week to various doctors; but while challenging, it is worth every effort~especially when we consider the alternative.  This trip through the ER and PICU was certainly not easy, but we also saw many other children in those places who did not walk out the hospital doors and who will not walk out those doors with the same results which we did.  It keeps things in perspective for us, even as we walk our own road.  We have been warned that more hospital stays are likely in our future, given the severity of Noelle's lung condition; however, we also know that we will not end up there again without God's sovereign allowance.  So we walk through these days with caution, with protection, and ultimately with trust, knowing that He has gone before us; and we look forward to the days when we can "relax" and deal with the "easy" things such as teething, trips and falls, stitches, broken bones, and the various emergencies that "normal" children and parents face on a daily basis.  In the meantime, we do not take one day for granted and continue to thank God for this precious miracle that grows more and more dear to us each passing day.  May God richly bless you for your fervent prayers on our family's behalf.

PICU Day 17 ~ Full Update

Day 17 in the hospital showed more improvement and gave hope to coming home, but with the blood clot and the high CO2 issue hanging over our heads, we were not sure when it would truly happen.  Noelle tried to squeeze in some sleep amidst the breathing treatments, chest PT, regular feedings, assessments, and various other tests and procedures that seem to arise each day while here.  Her morning exam looked positive, but everyone seemed to be waiting on the blood gas results to be repeated that night as well as the ultrasound on her blood clot, scheduled for the next morning.  The CO2 issue was especially concerning to the medical team and had them puzzled, so we did not get our hopes too high at the prospect of leaving soon.  During the late afternoon, the ultrasound tech arrived to scan her leg, and we were pleasantly surprised to discover the time had been changed from the following morning, which meant we would have answers by early the next day.  At nearly the same time, we were informed that the blood gas had been rescheduled for the next morning and would be clustered with her 4:00a.m. labs.  We were very glad she would not be stuck an extra time and were thankful to finally have something clustered within her care plan but were slightly disappointed to wait for the blood gas results.

~Kim and little Kara~

Tom sweetly took full responsibility for Noelle's care through the evening as I met with a fellow NICU mom, Kim Huggins, for dinner (in the hospital...thankfully, they have Subway!!) and was able to visit one of her little daughters in the Baptist NICU.  We had met several weeks prior on a day when Tom and I had taken Noelle to see her Forsyth NICU family.  She recognized us from reading the blog, which the nurses had shared with her; and as we began to talk that day, a connection was made between two people who have shared some very similar and yet very different experiences through their NICU journies.  Kim and Kevin were expecting twin girls when Kim's water spontaneously broke at 25 weeks, and Kara and Kahlan were born.  Kahlan lived 18 precious, yet heart wrenching hours; and her identical twin, Kara, has bravely fought a difficult battle through the past several weeks in the NICU.  Since that initial meeting, I have followed Kara's progress through the Huggins' Caring Bridge page (http://www.caringbridge.org/visit/karahuggins) and thus was aware when this little family made the transition to Baptist for ROP issues (same as Noelle) and connected again with them when we visited Baptist for an appointment for Noelle and then later the same day were admitted into the hospital through the ED.

~Sweet little Kara~

The last few weeks, Kara and Noelle were on the same floor but in separate, locked down areas; so Kim and I kept up on each other and met a couple of times during our stay and spent time visiting.  Please pray for this sweet little family who, like us, desired children from God and have now lost one and are fighting hard with the other one.  Kara has surprised the doctors on multiple occasions with her progress, especially considering everything she has gone through; and yet, they are a long way from determining what issues they will truly face with her down the road.  At this time, she weighs nearly 4lbs.; and they are waiting for her to gain a few more ounces to determine if she will need a shunt surgery, after which they would like to return to Forsyth (like we did) and allow Kara to continue to grow until she is able to go home.  As I looked at tiny Kara, it reminded me so much of the days that we spent with Noelle as she lived in that little isolette.  Those days sometimes seem like a lifetime ago; but most days, it seems as if we are still right in the middle of our NICU journey ~ it has simply changed form.  But as Kim and I discussed, God continues to give us grace for each issue which we encounter with our precious girls; and we "simply" leave it in His hands and take it one day at a time.  I know Kevin, Kim, and Kara would be extremely grateful to have others praying for them as they walk through these difficult days; and we continue to truly appreciate your constant prayers for Noelle.

PICU Day 18 ~ {July 12, 2012}

A full update will be coming sometime in the next few days, but we did want to thank people for praying and let everyone know that we are home!!!  God was gracious in so many ways, and you will understand more when we have a moment to share details.  We still spent a full day at the hospital today and arrived home around 9:00PM and are quickly trying to adapt again to being attached full time to oxygen as well as a pulse oximeter amidst the other adjustments of things such as administering all of her new medications according to the proper schedule.  However, it is worth every single "inconvenience" just to be home with our sweet girl.  Thank you for praying so earnestly for us, and we look forward to sharing the details very soon.  To God be the glory....great things HE has done!!!

PICU Day 17 ~ (July 11, 2012)

Today was another full day, although not nearly as crazy as yesterday; but the short, interrupted nights of the past couple weeks are catching up with us, so I will again post a more complete update tomorrow.  Noelle continues to do well and there is possible talk of her going home tomorrow, but we still have some pending tests that need to first be cleared.  Thank you for your continued prayers, and please enjoy these sweet videos of Noelle from today.  Now that she is feeling better, it seems her personality is being demonstrated more and more all the time!! The first video is more of her expressing her opinion on her hospital stay, and the second one is greeting her Daddy when he arrived at the hospital after working today.  I hope you enjoy these almost as much as we do!!

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 16 ~ {July 10, 2012}

I will post more details in the morning; but things are going well overall, although we did have an unexpected setback again today.  Nothing incredibly serious as of yet, but something they definitely need to address before we are allowed to go home.  Today was a very full day beginning at midnight last night, and tonight will be very busy again with various shots, feedings, labs, and therapies scheduled back to back.  I am barely keeping my eyes open, so I will write more in the morning when I am more coherent and can remember all that happened today.  Thank you for praying!!

*PICU Day 15 {July 9, 2012}

~The Beginning of  "Everything goes in the mouth"~

Today was a better day as Noelle quickly adjusted to her new space and has now settled quite well.  She was finally able to get some sleep through the night, even while being awakened in the middle of the night for a shot and lab draws {at two different times}; but she calmed quickly and went back to sleep and also took restful naps throughout the day.  There is a marked difference in her when she actually rests while sleeping, and she is able to do this more, partly because I have started limiting the medical staff as to when they can bother her.  Now that she is no longer critical, it just is not necessary for her to be assessed and have various vitals taken so many times in a row by so many different people {i.e. I appreciate the great care; but at this point, listening to her heart 5 or 6 times in a two hour period is a bit excessive}.  Consequently, I now ask them to wait until she is awake, and the result is a contented, smiling baby during her wakeful periods.  Her favorite part of today was when they allowed her to take a bottle while being evaluated by the speech pathologist; and thankfully, she did extremely well.  There was a hint of discussion about the possible need for her to continue to be fed by tube once home, in order to avoid the choking episodes; but she does so well overall, that it looks as if we might be able to adjust some things ourselves in how we feed her and simply be more vigilant during her bottle sessions.  She will be evaluated again tomorrow with a larger amount, and then the medical team will make their assessment and determine where to go from there.  For now, they are allowing her to take a bottle every four hours and are continuing to feed her by tube during the off periods so that she is still obtaining all the necessary calories.  I must admit that I have truly missed feeding her and thoroughly enjoyed that special time today~especially the sweet snuggle time afterwards!!

~I LOVE my new Zebra Cuddle Rattle from Barbie!!~

There are still a few more issues to be resolved such as an evaluation of her desatting episodes at night, her reflux, her oxygen weaning, and the levels of her Lovenox shots along with the blood clot in her leg.  She will undergo another echocardiogram tomorrow to recheck the function of her heart, and another ultrasound will be performed later this week to see how things with the blood clot are progressing.  The encouraging news is that "home" was mentioned today, and the cardiologist thinks it is possible we will be there by the end of this week.  While not trying to get ahead of ourselves, we are still very hopeful that this will be the case and are eagerly anticipating that time.  In the meantime, we are learning to rest and be patient, knowing that God already has the date set and will bring us to that point in His time {but that is so very much easier said than actually done...it is a moment by moment process at some points during the days!!}.  Thank you for your faithful prayers, and we hope to report another great day of progress again tomorrow.

*She is no longer in the PICU, but I have not yet figured out a new title and decided to leave things for now since she is still within the same unit*

PICU Day 14 ~ (July 8, 2012)

~Giving Nurse Jacy a Goodbye High Five~

Noelle turned seven months old today and celebrated by graduating to the Intermediate Care Unit where they keep the high acuity patients.  We still have one more level to step down {what they call "the floor"} before she can go home, but we are one step closer.  Oddly enough, all of these units are connected in a "U" shape, but the PICU has its own entrance.  So now we come through a different set of doors and have a completely different care staff {other than the main doctors, who remain the same}.  The atmosphere is quite different and much more noisy than where we were previously; and unfortunately, Noelle has taken careful notice of these facts.  I did not expect such a reaction from her since we moved only a few steps down the hall, but it is different enough for her to feel unsettled and scared when she wakes up and does not recognize her surroundings.  Thankfully, we still have our own room and can both still stay with her and be close for her every need.  The parameters for moving to the next level have not been revealed to us yet, but we do know that the doctors would like to complete some further studies before she goes home.  The latest theory is that she may be aspirating some of her milk when she eats or refluxes as she still chokes fairly often when she eats her bottle {preemies often mix up the eating sequence: suck, swallow, breathe, and instead often breathe in before swallowing, causing themselves to choke}.  She has gotten better about it since she was in the NICU, but it is still pretty severe  and even still scary to us and would cause most people to panic if they saw one of her episodes.

~Getting rocked by Daddy after waking up scared~

These possible aspirations could explain the trigger to this aggravation of the pulmonary hypertension, and so a swallow test and perhaps a barium test will be performed to determine if there is any issue and if they can help her in some way.  We are hoping for some definitive results from these studies and even some solutions that may prevent us from being back here shortly.  A sleep study has also been mentioned since she still tends to desat at night while sleeping deeply, and they want to be certain that there is not a true issue either.  The blood clot in her leg is still of utmost concern although they were able to detect a faint pulse in her foot throughout the day, encouraging us greatly.  We will continue with the levonox shots for at least four more days and are praying that will be the end of those with only a partial baby aspirin being the therapy used at home.  Noelle weighed 6lbs. 1oz. today which is encouraging because she is consistently above 6lbs now, but slightly discouraging since she was 6lbs. 2oz. two weeks ago before all of this started, and we have not yet progressed past our baseline from that time.  However, we are hopeful that once she fully recovers from this issue that she will start hitting larger growth spurts as her heart continues to heal and quits burning extra calories trying to function properly.  I am sure there is more that I am forgetting, but I will have to write tomorrow concerning anything missed.  Tonight will be filled with lots of snuggles as we attempt to help Noelle adjust to her new space, and we truly thank you for your prayers as we traverse all of these transitions in an effort to make one more step toward home.  Thank you.

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 10 ~ {July 4, 2012}

~Nearing the end of the extubation process~

We missed the fireworks tonight, but Noelle provided her own little 4th of July celebration that was enough for us.  It was not without some drama, but she was extubated today and is doing quite well, considering the overall circumstances.  At this time last night, we thought the extubation might happen some time today; but this morning the medical team informed us that they would prefer to do a long, slow wean and have her come off the ventilator sometime Thursday or Friday.  This did not bother us since this is the fourth time we have been through this process, and we always want to be sure that she is fully awake and ready to have that support removed.  However, she began to wake up this afternoon and really start fighting the ventilator, and they decided it was the time for extubation to take place.  At first, things seemed to be going normally; but we quickly saw that Noelle was not responding as she should once the breathing tube was removed.  This is not a completely abnormal response, so they gave her some extra oxygen and watched for her to recover and start breathing on her own, but this still did not happen.  Several things were happening all at once, but they bagged her to provide manual breaths along with oxygen and kept working with her.  She would take a breath when stimulated but then had difficulty moving the air in her system, so she would then stop and clamp down.  It was nerve racking to watch her little body struggling to adjust while hearing the monitor sounding because of a drop in her heart rate and oxygen levels.  The team continued to manually help her and work with her and also decided to administer a drug to reverse the effects of the pain/sedation medication {Fentanyl} and allow her to awake; and thankfully, the tiny amount they gave her worked almost immediately.  The doctor had told her this was her last chance before they reinserted the breathing tub; but she opened her eyes, began to cry, and started breathing and moving air on her own, allowing us all to breathe a sigh of relief.  The entire process took more than 30 minutes and was the most difficult extubation we have ever experienced with her. 

~Exhausted but ventilator free Baby Girl~

Perhaps it was her way of celebrating the 4th and making up for the fact that she cannot watch fireworks tonight or wear her sweet little 4th of July outfit that Mommy has been saving for her for weeks!  Either way, we are grateful that she is now doing well without the ventilator and having very few desaturation episodes thus far.  She does still have the blood clot issue in her leg, but it appears to be better than last night and slowly responding to the medication, so we are hopeful that it will be resolved within the next day and her circulation back to normal.  We hope you had a wonderful 4th of July holiday and appreciate your continued concern and prayers for us.

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!!}.