Settling into Home

~Sweet, Sleeping Baby~

My heart is full this week as we have enjoyed so many sweet moments with Noelle being home.  It is an entirely different experience now that she is off her oxygen, and we have adjusted quickly to the freedom of navigating around our home without being attached to machines and monitors.  We have also had our moments of concern and adaptation as we begin to encounter issues with her that are often normal for term babies but must be monitored more closely with her due to her still small size {i.e. spitting up}.  God continues to teach us that He is in control, and we must "be anxious for nothing" and always trust Him with our precious daughter's life.  Noelle seems to be recovering well from the surgery; and thankfully, her Hirschsprungs biopsy came back negative!!!  We are so grateful to God for this outcome and truly appreciate all those who have been praying concerning this issue. 

~Eating with Grandma Wagner~

~Studying faces intently~

Grandpa and Grandma Wagner visited for a few hours on their way through town, and they soaked up some snuggle time with Noelle while we enjoyed the sweet fellowship with them. 

~Sound Asleep with Grandpa Wagner~

Monday was our busy day this week as Noelle was evaluated in our home by Child Developmental Services, and we were very encouraged at her progress.  She is testing right at her adjusted age {2 months} and even ahead in several areas.  She is behind in communication, but we have already seen changes in that over the past two days, and they expect that to improve the longer she is home and interacting with us.  The tests did not compensate for her prematurity or length of time in the NICU, so we were very pleased to see her doing so well.  After that, we bundled up and were off to the pediatrician for a post-discharge follow-up and a weight check which turned out to be a great post-surgery number at 4 lbs. 3 oz.!!  The doctor was very pleased with how she seems to be recovering, and we will continue to follow-up with our pediatrician as well as the surgeon over the next few weeks.  Thankfully, we have been able to settle into home since Monday with no further appointments scheduled until later next week.  This is the first time for us to have this many days in a row at home with no appointments, and we have been enjoying the time to settle into a new routine and allow Noelle to truly feel at home in her own surroundings.  Each day reveals new progress with her as she realizes that she is receiving positive touch and patterns develop in her schedule. 

~Bundled up and ready to go~

~Yes, I'm in here somewhere!~

Our favorite thing with her began just a few days ago as she began to purposefully smile once in a while.  It is so sweet to see her little eyes crinkle with joy as she responds to our voices and antics.  She has become very watchful and intently looks into our eyes often when we are holding her or talking to her, and I am seeing just a glimpse into what lies ahead as our little daughter begins to watch every step we choose, word we speak, and action we take.  What an incredible responsibility God has given us in raising this little one for Him, and we are thankful that His grace will continue to sustain us as He molds each one of us through this process.

~Playing with Daddy~

~Studying Daddy~

~Smiling at Daddy~

~Midnight Snuggles with Mommy~

Now that we are settling into a new routine, I cannot begin to explain what it means to have her home.  I think some of my most favorite moments come in the middle of the night as I feed her and snuggle her.  While it was always comforting to call up to the NICU throughout the night, it is entirely different to simply look for myself and see how she is doing and then to pick her up and hold her close.  These were experiences I did not have for the first four months, and I'm thankful to take full advantage of them now!!

~Content, Tiny Girl~

Overall, she is a very content and happy baby and typically cries only when something is bothering her.  We are very blessed to have such a tough little fighter on our hands, and we look forward to seeing her grow and watching her personality continue to come through in the years to come.  Thank you so much for your many prayers, and we look forward to sharing how God continues to grow our sweet bundle of joy!!

NICU Day 123 ~ (April 20th)

~All dressed up for the trip home!!~

 After all the confusion on Thursday, I was fully prepared for a lengthy discharge process on Friday; but it was not necessary.  With one signature, a change of outfits, and the packing of a just a few items, we were out the door and on our way home!! 

~"Thank you for taking care of me!"~

We said good bye to her nurses, a couple of which had been her nurses the first time she was here in February.  She was only half her current size at that time (less than 2 lbs.), so they had enjoyed seeing how much she had grown in the previous 2 months.

~Final Goodbyes~

We did get stopped quite often on our way out due to her little tutu and headband, custom made by our sweet friend, Emily Curtis (http://www.etsy.com/shop/EmmysBB).

~Ready for the ride home~

I thoroughly enjoyed the trip home, knowing that our precious bundle was in the backseat sleeping contentedly.  She is now settling back into her own surroundings, and we are loving being mobile and able to carry her around home without being attached to machines.  While I would never wish the ER experience on her again, we are incredibly grateful for the way God orchestrated the surgeon He desired to perform the surgery, our neonatologist Dr. Tatum to be on service, and the ability for her to come off her oxygen.  In the end, it made this last week worth it and allows us to remove that surgery from the list of things to still be performed. 

~This one is a little fuzzy but too cute not to share.  Happy to be home!!~

We were very aware of your constant love and prayers this past week and thank you for your persistence in prayer on our behalf.  We look forward to sharing more milestones in Noelle's life in the days to come.

***Again, now that we are home, I will post only once or twice a week as we settle into a new routine and enjoy time together as a family***

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.