NICU Day 122 ~ (April 19th)

Unfortunately, due to a misunderstanding with the changeover in medical staff, we were unable to bring Noelle home today.  We finally were able to sort everything out and get everyone on the same page this afternoon, but by then they had already decided to monitor her for another 24 hours on her feeds to be sure she is tolerating them well.  While it is disappointing in some respects, we are thankful that it means another 24 hours of monitoring on room air, making it a full 48 hours before she comes home without her oxygen.  We look forward to tomorrow and bringing our little girl home to enjoy both day and night!!

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 120 ~ (April 17th)

~Enjoying time with Daddy~

Today was a fairly uneventful and boring day as NICU days go, and we are grateful for it.  Noelle has not progressed quite as fast as we thought she would; but she is doing well and making good strides, and we would rather she take them more slowly and do well rather than rush the healing process and consequently have a setback at a later time.  She still was not allowed to eat today; however, by the end of the evening, her bowel sounds were returning which means that things are "waking up" and beginning to work again.  Hopefully this means that we can start feeding her again tomorrow, and we're praying that she tolerates her feeds well.  Since she is currently in the NICU, the surgeon has decided to go ahead and proceed with the Hirschsprung biopsy and put that behind us.  He would have performed it during the surgery she had Saturday night; but pathology does not work on the weekends, and they have to perform some immediate tests on the sample.  Lord willing, in a few weeks we will have an answer to some of our questions.  We were told today that this biopsy is not 100% conclusive and could be repeated again at a later time if issues continue to arise, but we will simply keep taking the information as we receive it and handle it accordingly under the current circumstances. Noelle also weaned well on her oxygen today and my hopes are up that she will be able to come off of it completely before coming home.  If not, then we are happy to keep her on it as long as is necessary, but it would be wonderful for her to come home oxygen free {at least when she is awake!  Some babies need it for a period of time only for sleeping}.  I had the opportunity to hold her for a couple of hours which was a sweet relief after empty arms for the past few days!!  Thank you so much for praying specifically for Noelle and her healing as she seems to be doing well with the pain overall unless moved around too much.  We thank God for another good day and look forward to reporting more progress tomorrow.

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 118 ~ (April 15th)

Yes, you read the title correctly, and we are counting NICU days again as Noelle had emergency surgery last night and was readmitted into the NICU at Baptist for recovery.  She is doing well overall, but the last 30+ hours have been quite the ride, and this post will be a little lengthy in catching up the details.  I have debated many times in my mind as to how much I should share, but ultimately we desire for people to pray specifically for Noelle and hope that these details will fade in people's minds as she grows old enough to understand herself all that has happened these first several months in her life. 

~The sweet baby cupcakes that Travis & Tawn made for our baby shower~

 Yesterday began with the joyous occasion of a baby shower for Noelle at the generosity of sweet friends from our church family, and I enjoyed a wonderful time with many of the women in our church while Tom stayed home with Noelle.

~Four Generations~

We then said "see you later" to my mom who had been able to visit while  out here for an event in Greenville, SC.  My grandparents had also come over for the morning so my grandma could attend the baby shower, so we were able to get some special pictures before everyone left.

~My grandparents & Noelle's great grandparents~

~Our little family~

Soon after that, we headed up to the NICU at Forsyth to deliver leftover cupcakes, to visit, and to also have Noelle's nurses check out her inguinal hernias.  Before we had been discharged on April 2nd, they had taught me how to reduce her hernias and what to watch in regards to them.  Last Thursday we saw a surgeon who was unable to reduce her hernia for the first time.  I had not had any issues prior but we left with the instructions to let her know if it still was not reducing in a few days.  I knew what else to watch from the Forsyth nurses, so when it started turning pink on Friday night and even more red on Saturday, it was time to get it seen.  We received confirmation on Saturday afternoon when her nurses took one look at it and told us to go get it checked out, thus beginning our "bump in the road" of the last 30+ hours.

~Waiting in our triage room in the ER~

We arrived at the children's hospital ER around 6:00p.m. and while we spent some time waiting through the next six hours, the majority of the period was involved with evaluations and many attempts to reduce the hernia.  Finally, after a combined effort on the part of several doctors and the pediatric surgeon, they determined that they had no recourse but to proceed with emergency surgery.  The concern was that something was caught {often intestine}, and when it reaches the point which Noelle's had, it usually means something has been compromised.  She went into surgery at approximately midnight and was out of surgery and into recovery in the NICU within 2 1/2 hours.  The surgery went well overall, but they did discover that one of her ovaries and fallopian tubes had been caught and twisted in the hernia and had died, requiring removal.  While the results saddened us, it honestly was good news in light of the entire picture and all the possibilities that had been present.  Had it involved compromised intestine, the surgery would have been much more difficult and the recovery much longer.  Her body should adapt and operate very well with only the one ovary, and we are very thankful for God's guidance and protection through the process.

~Noelle recovering after surgery~

We were able to see her shortly after she was admitted into the NICU, and it was heartbreaking to see her tiny body after so many hours of trauma.  She was extremely pale and still under the influence of the anesthesia, but she did hold onto our fingers and showed faint signs of her normal self. 

~Holding onto Daddy's finger~

~Holding onto Mommy's finger~

We went home and slept for a few hours before heading back up to the hospital and were encouraged to see more signs of improvement as the afternoon progressed.  They expect her to be extubated sometime tonight or early tomorrow, and we hope to be home by Wednesday at the latest.  Ultimately, we know that God had this timing already planned and had everything in place for her to receive the care He desired on this specific day.  We knew she would eventually need this surgery, we had just planned for it several months down the road and were not expecting this to happen in the manner that it did.  Still, we are very grateful that we can "check this off the list" of things to be accomplished in Noelle's tiny life and pray that she will recover quickly and be back to her normal self.

Tonight, she looked much better than she did nearly 24 hours previously, and we cannot thank you enough for your continued prayers.  Our biggest concern right now is her breathing and the need to come off of the ventilator as soon as possible.  She already has CLD {chronic lung disease}, and each day on the ventilator only adds to the issues with her lungs.  We will continue with daily updates while she is in the NICU and look forward to the day we can again bring her home.  Thank you so much for you continued love and support and your faithful prayers before the throne of grace.  God has been faithful to see us to this day and will not leave us for one moment of this process.  We are ever grateful that He holds our days in His loving hands.

Noelle's Evening with Daddy

Noelle absolutely loves her daddy and cranes her head towards his voice whenever she hears him talking to her.  He had some time this evening to devote just to her, and she thoroughly enjoyed their activities together.  The pictures say it all!!

~Daddy reading her a story~

~Looking at the pictures~

~Soaking up the snuggles~

~Catching a cat nap~

She currently weighs 3 lbs. 15 oz. and is in and out of doctor appointments right now for various observations and procedures.  They have postponed the biopsy for another month but now believe that it is probably unlikely that she has Hirschprungs disease.  It is definitely still a possibility, but it is encouraging that she is currently doing very well in that regard.  We also had encouraging news this week regarding her hypothyroidism and now understand that this may be a transient issue which she could outgrow.  If not, she will be treated with medication for the rest of her life, but we are thankful for the hope that this may pass and are grateful as well that it is a controllable issue, regardless of the final outcome.  Thank you for your continued prayers as we continue to wait and trust God for more answers regarding Noelle's health.  He has certainly brought us this far, and we know He will never fail us.  What a comfort in which to rest!!

Noelle's First Week Home

Our first week home with Noelle has been filled with joy and love as she settled into her new surroundings at home.  She has adapted quite well with a nearly seamless transition and overall is a very easy and good baby.  She sleeps nearly 12 hours at night and goes right back to sleep after her feedings every 3 hours.  During the day, she is content to look at her mobile, nap, listen to music, snuggle, and eat.  We are thoroughly enjoying our precious miracle; and while being at home is not free from all anxiety, God has graciously prepared us for these days, and we are truly grateful for each and every moment we have with her.  Yesterday as we thanked God for His Son, Jesus Christ, and His resurrection from the dead, we also gave thanks for 4 months of life outside the womb with Noelle.  She currently weighs 3 lbs. 12 oz. and is quickly approaching the 4 lb. mark!  She has a busy week this week with follow-up appointments, and we are hoping to get some more answers regarding the testing for her intestines.  As always, thank you so much for continuing to pray for us.  As many have reminded us, the journey is not over, but we have simply taken another path in that journey and still need prayer as much as ever.  The pictures that follow are just some of the moments we have captured during her first week in her very own surroundings.  Welcome home, Noelle!!!

~First Bottle at Home~

~First Nap at Home~

~Daddy decided to follow suit~

~First Bath at Home: She slept right through it!!~

~Snuggle Time with Daddy~

~Watching her light up ornament~

~More Sleeping...~

~Holding her own paci!~

~Napping~

~Meeting Grandma~

~Talking with Daddy~

~We took a visit back to the NICU and she weighed in at 3 lbs. 11.9 oz.  {Love Amanda's face in this one :)~

~Visiting with Meredith, one of her sweet nurses~

~Loves playing with Daddy~

~Posing in her outfit from Grandma Wagner~

~Snuggling with Grandma~

~Happy Girl~