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 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.