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 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 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.