Nine Months Old

~Sweet, 9 Month Old Baby Girl~

~Blurry, but My Favorite: Love these Smiles!!~

I can hardly believe this little girl is nine months old today!  There were many days when I was not sure we would ever make it this far; but by God's grace, we are enjoying this precious gift who is growing like a little weed.  She still did not quite average 1lb./month as she weighed 8lbs. 12oz. this week; but she is close, and everyone is quite pleased with her growth.  The last few weeks have been very full for us, not only with multiple doctor appointments but also with the weighty results and projected treatment of the sleep apnea and waiting on the doctors to consult and develop a plan.  We did not share many details earlier since we needed to process the news ourselves, and we also did not want to cause undue alarm if the proposed treatment was dismissed by the rest of her medical team.  However, it was and is still being seriously considered, and so we are facing the possibility of a tracheotomy to solve the sleep apnea issues.  This came as a complete shock to us since Noelle has been doing so well, and her doctors almost did not proceed with the sleep study originally.  I truly thought it would confirm some reflux issues but nothing more serious than that, and it took us a few days to wrap our heads around the information, once the ENT highly recommended it almost two weeks ago.  Thankfully, he still had to consult with Noelle's cardiologist and pulmonologist who were greatly concerned but not as extremely urgent about it since they had seen progress with her since her last hospital stay.  The last ten days were filled with much discussion among them, and we finally learned the new plan at Noelle's pulmonology appointment on Thursday.

~Snuggling with Gigi on the Porch Swing~

The medical team has decided to repeat the sleep study on October 17th; but if the results are the same, then they will proceed with the tracheotomy {or tracheostomy~the term is interchangeable}.  I will admit that I initially struggled with this issue more than I ever expected, especially considering how many life and death situations we have already come through in the past several months with Noelle.  However, after much wrestling with it, I realized that I had become quite attached to our new "normal" life, especially since I felt as if we could "see the light at the end of the tunnel" and hoped to be completely "normal" again by next summer {i.e.~oxygen free, fewer doctor appointments, fewer medications, fewer restrictions, etc...}.  The tracheotomy completely threatened {well, it totally dashed} any hope of that normality returning for many months...years even, since the ENT specialist had prepared us to have it inserted for a minimum of two to three years.  It also meant another very long hospital stay since we would be admitted for a minimum of one month for the surgery and the intense training we would receive to care for Noelle in her new condition.  The other ramifications are incredibly numerous for day to day life as well as long term development and plans, and they become overwhelming when we dwell on them; but in the end, God revealed my sin to me and reminded me once again that it is His plan that is is best for Noelle and our family, and I am not to become attached to my own dreams and plans.  If we truly desire for Him to be glorified, then we must live that in our daily walk, regardless of the painful circumstances we endure.  Now, I can truly say that we are at peace with whatever the results turn out to be next month.

~Grandma is my new Snuggle Buddy!!~

This does not mean that we do not have fears that must be surrendered or tears that easily flow, but it does mean that we know that the same God who gave life and breath to Noelle and brought her to today is also the same God who will sustain us through this next chapter, however it comes to be written.  In the meantime, we are doing everything humanly possible to help the situation in the form of controlling her reflux.  Noelle's medications has been nearly doubled {due to her weight gain}, and we are using and performing every other reflux aid we can possibly do.  We know that reflux can reflect as apnea episodes, so we are trying to eliminate these as much as possible so that we can get as much of an accurate reading as possible in a few weeks.  Thankfully, my mom has recently moved here and is a tremendous help during this time, especially as we work through these issues.  We truly appreciate your prayers in this matter.  Selfishly, we pray that it will not come to this while ultimately desiring that God's will be done in both Noelle's little life and our family's life as a whole.  We will certainly continue to update but will not have any further information on this issue until the end of October.  In the meantime, we continue to enjoy this sweet girl and her precious smiles each day as she grows and continues to change right before our eyes.  Happy Nine Month Birthday, Noelle!!!

~~~More pictures of life with Noelle the past few weeks~~~

~I am reaching for toys now!!~

~Sweet Snuggles with Grandma~

~What was THAT noise?!!~

~Visiting with Aunt Donna at the NICU~

~A Nap on Gigi's Porch Swing~

~What a life!!~

PICU Day 7 ~ (July 1, 2012)

Today was another day of waiting as we did not receive any answers yet in our request for information from Boston.  It appears it will take longer than we originally thought since some of her files are so large, they cannot be sent electronically but must be physically sent up to Boston.  We are seeking some information through a couple more avenues, but it is very possible that we will continue to proceed as originally planned with the heart catheterization on Tuesday and gain as much information as possible before making any further decisions.

~Listening to Aunt Donna singing sweet lullabies~

In the meantime, Noelle had a fairly good night last night with fewer desats than most other nights this week.  Today she was a social butterfly as several people from our church visited us {a huge encouragement to us!}, and her Aunt Donna from Forsyth came to see her and soak up some snuggles.  We have been so blessed to have the input of our FMC family through this process.  While Noelle no longer lives in the NICU, they still keep up with her and care for her as their own, and their advice holds a lot of weight with us as they love Noelle and have her best interest at heart.

~So comfy in such familiar arms~

We know that God will guide and direct us, showing us His desired path for us in this process; and if He chooses for us to make this transition to Boston, then He will pave the way and make things clear.  We will continue to keep everyone posted as we are informed of each new step in this process, and we truly appreciate your prayers for wisdom and guidance as we walk this path of so many unknowns {unknown to us, but thankfully not unknown to Him!!}.

NICU Day 117/Home Coming Day ~ (April 2nd)

What an amazing day this turned out to be, filled with grateful hearts and an incredible amount of love.  The day was incredibly bittersweet as we said "see you later" to our NICU family whom we have grown to love immensely.  No words could even begin to describe how thankful we are, not only for the care we received the past four months but also the love and friendships we now have through this journey.  I think the pictures along with the FOX 8 newscast describe that day better than I could ever communicate in words, so please enjoy these special memories captured on "film."

(The people included are not even half of the team that has taken care of her these many weeks.  We still need to go back and capture some pictures we missed with several people!! Thank you, Joy and Lori, for taking so many pictures!)

~Dianne, Noelle's nurse her last night in the NICU (Noelle loved snuggle time with her)~

~We love Dr. Tatum and are so very thankful to God for him and the role he played in Noelle's care~

~Lori, one of Noelle's awesome nurses~

~Dr. Helderman, another of Noelle's wonderful neonatologists~

~Christi & Christina: Noelle's fantastic delivery nurses~

~I asked Donna to dress Noelle in her home going outfit.  It was especially fitting since Donna was the one to dress her for the very first time!~

~All dressed and read to go and snuggling with Aunt Donna (who came in on her day off to see us leave)~

~Noelle's message for the Forsyth NICU (courtesy of Auntie Em ;-)~

~Removing Noelle's things...something I just could not bring myself to do~

~Forever bonded together (I have talked with her at least once a day since Monday!!)~

~Taking it all in~

~Amanda holds a special place in our hearts~

~Joy, one of Noelle's amazing respiratory therapists~

~Candace, another of Noelle's sweet nurses~

~I love all the memories we have with Amy, Noelle's respiratory therapist (her mother made this precious blanket for Noelle)~

~One final kiss before entering the carseat~

~Tiny feet~

~Comfy, Cozy~

~Almost ready to go!!~ 
 

~One final "see you later..."~

~Happy family~

~Home, Sweet Home~

~I think I like it here!!~

NICU Day 113 ~ (March 29th)

~Surprised.  Excited.  Overwhelmed.  Thrilled.  Thankful.~

~Still in her "big girl" crib~

These are some of the words which describe the gamut of emotions today as we heard the new care plan developed by our medical team: NOELLE IS COMING HOME!!!!!  She has basically reached all of the necessary benchmarks, and they have decided that they can do the biopsy as an outpatient procedure in a few weeks after she has put on some more weight.  The current plan is for her to be discharged on Monday if all goes well over the weekend.  The first few weeks will be busy with the adjustment and doctors' appointments, but we are absolutely thrilled to be bringing our baby girl home with us.  Words simply cannot describe the emotions after such a long journey, but we have a new family in the NICU which we will greatly miss and look forward to visiting them as often as possible.  We cannot even begin to communicate the love and gratitude in our hearts for this incredible group of people who have made this day possible for our little family, and we are excited for the day when Noelle will be old enough to begin understanding who these people are and the impact they have made on her life.  God was incredibly gracious to us in placing us where He did throughout this process, and we are so grateful to Him for His incredibly loving care in our lives.  

Noelle still had a busy day today as we began to prepare for her discharge.  She had an MRI on her spinal cord to evaluate her tethered cord {we will receive results later, and it will probably need to be monitored for some time and possibly will require surgery}.  

~Preparing to go downstairs for her MRI with Aunt Donna~

She also received her "2 month" immunizations which made her really cry and broke my heart AND her Aunt Donna's heart.  Donna was her nurse today and even had a different nurse administer the shots so she would not have to be the "big bad meanie!"  

~Daddy enjoying some of the benefits of the open crib~

We still have a few other procedures to complete and some logistical things to sort, but we are on the fast track, and I know this weekend will fly by as we prepare what we can for her to live at home with us.  From the bottom of our hearts, thank you for your persistent, continued prayers before the throne of grace.  We look forward to sharing "the countdown" with you!!!

NICU Day 102 ~ ( March 18th)

~Getting Warm after Bath Time~

Noelle had a pretty uneventful day as she continued her trend of growth.   Last night (after our blog post), we called the hospital to get her weight, and she had gained 20 grams.  Tonight we weighed her before her bath, and she had gained another 20 grams for a grand total of 1, 290 grams / 2 lbs. 13.5oz.  We are very excited that she should reach 3 lbs. this week!!  We are still praying for wisdom for her medical team as they seek how to handle her possible tummy issues.  Our prayer is that when they repeat the x-ray test that they will be able to make a definitive decision and not have to move forward with a biopsy.  She should be big enough for them to re-test in approximately one week to ten days, and we're thankful to be getting closer to decision points on which our home going hinges.  We are thoroughly enjoying our growing baby girl and are amazed at how "big" she is each time we see her.
My favorite parts of today include the following:
~Her Aunt Donna snuggling her while I had to be gone for church
~Bath & Snuggle time
~Her night nurse letting me know that she would snuggle her tonight when she got her out to feed her

~Sleepy, Snuggly Girl~

I'm so incredibly grateful for the nurses and other medical staff (respiratory therapists, nurse practitioners, etc...) that take care of our sweet girl.  Words could never begin to express how much these people mean to our family.  We love you, NICU family!!!

NICU Day 98 ~ (March 14th)

A Day in Pictures

Noelle had a very busy day today amidst all of her normal eating and sleeping times.   She conversed with Daddy....

...played airplane pacifier with Daddy...

...took a nap with Daddy...

...took a bottle from Aunt Donna...

...snuggled with Aunt Donna...

...cuddled with Mommy...

...tried out her doll swing (outside of her isolette) while Mommy was busy and could not hold her...

...(this picture gives some perspective of size)...

...visited with Uncle Jim...

...listened to stories on her recorder and took a nap in her swing...

...took a quick bath and weighed in at 1,200 grams / 2 lbs. 10 oz.!! (They usually weigh her in the middle of the night but tonight we got to weigh her early since it was bath night.  She weighed in at 1,180 grams last night and gained another 20 today!!)...

...took another bottle and went right to sleep.

We love and miss you, sweet girl, and cannot wait to see you again tomorrow!!  Good night...