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~