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.

NICU Day 119 ~ (April 16th)

~Noelle after waking up tonight~

Today was a long day but it ended well, and we are beginning to see the light at the end of the tunnel in this bump in the road.  We walked into rounds this morning with who else but Dr. Tatum, and we were incredibly comforted and relieved to have him looking after Noelle today as he knows her so incredibly well.  The day started off slow with little change from yesterday.  Noelle rested very well and would open her eyes from time to time to acknowledge our presence but still seemed quite out of it and not really herself.  They continued to wean her ventilator settings but it was looking as if it would be tomorrow before anything major would happen as far as extubation.  However, around 8:00 this evening, she fully awakened to an alert state and made it clear that she was ready for that tube to come out!

~Getting ready to extubate~

She was breathing extremely well over the ventilator and was making a concerted effort get the tube out herself.  After running a breathing test, they determined that she was indeed ready and the tube came out, and she was put back onto the nasal cannula with oxygen flow.

~It's out!!~

 She still has a replogle tube down her throat to draw any air off her stomach while it is still recovering from the surgery, but we're thankful to have the breathing tube out and see her getting back to her normal self.

~Happy Girl!!~

She was alert and awake for quite some time, and her nurse gave us a mobile which Tom set up for her to watch and listen to while we are gone tonight.

~Watching and listening to her new mobile~

Thank you so much for your continued prayers for our sweet little girl.  Our prayer now is for her stomach to "wake up" from the anesthesia and things to start moving through so we can begin feeding her again.  It looks as if Thursday will probably be the earliest day which we come home, but we'll continue to take it one day at a time and not rush the process.   We want her to be fully ready and possibly even weaned off the oxygen completely.  We look forward to another good report full of progress tomorrow!!

NICU Day 74 ~ (February 19th)

While we would not term today as "rough", it certainly was not an "easy" day in the NICU.  When we called and checked on Noelle this morning, they had stopped her feeds due to the amount of residual she'd had through the night (although I strongly felt a lot of this was possibly positional....I had requested for her to be put on her tummy through the night but it did not happen).  She also had jumped up 70 grams (obviously due to all the IV fluids), and her blood sugar had jumped up a lot from where it had been previously.  We went straight to the hospital for rounds so that we could talk to the doctor ourselves regarding her care.  Thankfully, her doctor was on top of things and already prescribing what we were requesting when we walked in the door today.  Still, things have still not gone quite as we had hoped.  The one main positive thing from today was that she was extubated and put back on the nasal cannula.  She definitely seems more comfortable having the tube out of her throat, and it was nice to see her take another step toward getting back to her "baseline" of where she was before she was transferred.  They still have not started her feeds as of yet,and obviously this has a domino effect.  Our prayer is that sometime tonight, she will be able to start back on her feeds and decreasing on the IV fluids and just getting back to normal.  Please pray for wisdom and patience for us as well.  Due to her first few days after being transferred and events that happened, we have definitely become more assertive regarding her care and it is difficult at times to know how hard to push for what we feel she needs or how much to trust the medical staff in these situations since they just do not know her as we do.  One step at a time, we hope she continues to recover from the surgery and get back to her normal self and start growing again.  I hope we have even better news to report tomorrow!!

NICU Day 44 (January 20th)

Noelle had an absolutely fantastic day today!!  She graduated to the cannula for a short time and just had oxygen flow.  It was amazing to see her whole face without all the big tubes and hat and things wrapped around it.  We can hardly believe what we are seeing only two weeks after her last big dip in the roller coaster ride.  Everyone is amazed at her progress, and even some of her nurses have said that it could only be of God.  Incredible!!  We never dreamed we would be this far with her only two weeks after such a severe episode, and we know so much of it can be attributed to the power of prayer and cannot thank you enough for the part you have played in her tiny little life.  We still have a long ways to go, but the steps we have been able to take in the last couple of weeks are such an encouragement.  It is fun to dream about the day when she might come home and all the things that go along with that.  We did hear a teeny tiny little cry from her tonight!!  There never was a sweeter sound in all the world.  She is still a little hoarse and raspy from the tube being down her throat, but she is making tiny noises nonetheless, and they are music to our ears.  The main thing now is for her to grow.  She did lose some weight (part of that is due to the fact that she was extubated and all the tubes that go along with that), so we are hoping that she gets back up to doubling her birth weight soon (she is currently 640 grams).  Another prayer request is for her hypothyroidism.  Some babies outgrow this (as is our prayer for her) and others have it the rest of the their lives.  If she does have to deal with this the rest of her life, then we will take it!!  But if God chooses to heal her of this as well, it would be another added blessing.  Other than that, we just enjoyed our time with her today.  She will go back and forth from the CPAP to the cannula until she can just stay on the cannula until she is off oxygen completely (we hope and pray it goes this way...it should, as long as she does not have a setback).  I hope we can put up some great pictures tomorrow in which you can see most of her face!!  Thank you for sharing in our joys and our sorrows through this process and for praying accordingly.

NICU Day 43 (January 19th)

We are so excited to be reaching new milestones with Noelle.  Today she was extubated and graduated to the CPAP machine!!!  They were not planning on doing it quite this soon (they were going to give her a little more time to grow), but her tube had a leak and needed to be changed so they decided to go ahead and switch her over and see how she does.  So far, she has done extremely well and has already been weaned on her settings twice.  They have warned us that this could be temporary.  She could get tired and worn out from breathing on her own after a period of time and may have to go back on the ventilator and grow some more.  We are trying to mentally prepare ourselves for this, but right now we are just rejoicing at her progress!!  It is so fun to see her tiny little mouth, and now we will be able to hear her tiny little cry.  Whoever thought that a cry would be such sweet music to one's ears?!!  Noelle's other milestone was gaining 10 more grams and more than doubling her birth weight.  They are hoping she will continue a steady gain of approximately 1/2 oz. (or 15 grams) per day.  Tomorrow should present yet another milestone as they plan on removing her PICC line.  We are so excited to see machines being moved away from her bedside and others being turned off.  She had a steady stream of nurses coming by this evening checking out her progress...she has quite the fan club (as they themselves put it), and many of them even call in and check on her during their days off.  We are so incredibly grateful for the care that she is receiving and thank God once again for placing us where He did during this time.  It is also encouraging to us to share with the nurses that so many people are praying for Noelle and have them be excited about that and acknowledge how powerful prayer is.  We're praying that it gives us many opportunities to share Christ with all those we are encountering so thank you for being a part of that testimony and praying for us!!

NICU Day 37 (January 13th)

We had yet another really good day with Noelle.  She is a completely different baby than she was a week ago, and the doctors and nurses are just amazed!!  It is incredible to go from one end (your nurse crying as she says good bye to you for the evening after a really bad day) to the other end (everyone just smiling and happy about her progress), and we know that it is only of God that she has made a complete 180* turn this week.  Thank you for your persistent prayer before God's throne for her--God truly uses it in our lives to bring glory to Him and cause us to recognize our complete dependence on Him for every step of life.  They continued to wean her ventilator settings today since she is doing so well, and basically she is now just on the minimum.  They could be more aggressive about weaning her and extubating her, but since she is still so small, the doctor is not anxious to do that--everything is to be done in tiny baby steps with her.  So, she will probably sit at these settings until her oxygen level is down to 21% (this is room air / what we breathe).  She has been sitting anywhere between 25% and 35% consistently so she really doesn't have far to go for that!!  We don't want them to rush things, but we are really excited about her being extubated soon...just the fact that it is starting to be discussed is incredible, especially after last week!!  Her echocardiogram revealed that her heart is still continuing to improve.  They are going to continue her heart medication until it is more improved, but they were able to wean her nitric oxide more based on what they saw.  That is still a matter of prayer and yet a huge praise at the same time!!  We are so grateful for God's evident hand on her life.  We are really enjoying our time with her, and it is fun to start seeing her personality come to life.  She definitely knows what she likes and does not like!!  She seems to be a content baby as long as she is not being poked or prodded or held down in any way.  The nurses are amazed at how strongly she pushes against them when they are trying to do a procedure on her!!  I hate to see her crying and pushing against them, and yet I am thankful that she isn't just lying there and being apathetic about it.  On the other hand, she is really responsive and loves to hold and squeeze our fingers or follow our voices with her eyes--so sweet to watch.  She also has made it clear that she prefers to sleep on her tummy as opposed to her back, and she likes her back to be rubbed as well.  These seem to be such little things in one sense, and yet it is fun to see some of these traits that we know will be evident for the rest of her life.  We continue to thank God for our tiny miracle and praise Him for what He has done and what we have faith He will continue to do.

NICU Day 36 (January 12th)

~Tom truly holding Noelle for the first time~

Noelle turned 5 weeks old today...I can hardly believe it!!  She was
doing well enough that Tom was able to hold her for the first time
(Kanga Care) for an hour this evening.  An hour has never gone by so
fast!  They continued to wean her ventilator settings today (slightly)
as she was responding well to that, so that is a huge praise.  We're
hoping that she can come off of that machine within the next week or so
and be extubated and move to a CPAP machine.  I can't wait to see her
little mouth!!  I'm also looking forward to her being more
comfortable--she is moving so much more these days that it often affects
the position of her tube and bothers her.  She weighed in tonight at 1
lb. 7 oz. so we're excited to see progress there as well.  It is already
hard to imagine how tiny she was when she was born.   She is still so
small and yet she is very close to doubling her birth weight.  She will
receive an echocardiogram tomorrow so we're looking forward to seeing
how her heart is doing at this point.  Other than that, there is not
much to report (which is a good thing!).  As always, thank you for

praying!!