NICU Day 121 ~ (April 18th)

~Can you see what is missing?!!!~

Noelle made huge strides today and even set some new milestones in her little life.  She did so well through yesterday and last night that they decided to remove the replogle tube and allow her to begin eating again, which she thoroughly enjoyed.  Of course she does not understand why she has not been allowed to eat, and so she holds the bottle in her mouth as if you will never ever feed her again!!  The term in the NICU for not being allowed to eat is "N-P-O" {which is an abbreviation for a latin term}, and so the standing joke is that she will probably always greatly dislike those letters for some "odd" reason. She has lost some weight, which is typical of going through surgery and not eating for a few days; but she is already eating like a champ and should be back up to that 4 lb. mark in no time.  The surgeon was also able to perform her {quite painless} biopsy for Hirschsprung disease so we should have some results back in a couple of weeks.   However, the best part of today and the biggest answer to prayer is that Noelle has come off her oxygen support entirely and is breathing room air!!  Overnight they had been able to wean her down to the levels on which she had been while at home {which was an extremely low flow}; so today they decided to do a trial run on room air and see how she did.  We began the trial at 11:30a.m., and she is still going strong and doing extremely well.  Her cannula came out a few hours after that, so she is one happy girl with nearly everything gone from her face; and we are thoroughly enjoying looking at her tiny face with nothing sticking to it!!  She still has an IV heplock in her head which they will remove once they are certain she is tolerating her feeds well and no longer in need of any fluids, which should be within the next 24 hours.  Tomorrow will be the day we find out if she is coming home in the afternoon or if they are keeping her one more night for observation.  Either decision is fine with us at this point, but we are getting very excited to have her home with us again.  We have missed having her here {well, the few hours we are here each night anyway!} and are looking forward to settling into what we hope will be a semi-normal lifestyle for a while.  Thank you so much for continuing to pray for her.  I really do not think we would be where we are today without the prayers of so many faithful believers.  God has been amazing in how He has moved so many to lift our precious little girl up in prayer to Him, and we are ever grateful for how He has used such a vast multitude of people in the life of our little family.  Thank you for sharing in our extreme joy tonight, and we very soon look forward to reporting another sweet home coming day.

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!!