NICU Day 114 ~ (March 30th)

~Noelle in her very first graduation cap (courtesy of Auntie Em)~

Last night, Noelle celebrated her upcoming home going with a little graduation party hosted by her Auntie Em and a few of her other nurses and NICU staff who have previously taken care of her.  

~Auntie Em & Noelle in their matching headbands (made by Auntie Em)~

She had a wonderfully "boring" day, but it was also bittersweet as we began to say "See you later" to some of our NICU family members who will not be working again before we go home.

~Noelle & her Uncle Jim~

I do not have the words to begin to say "thank you" to these incredible people.  My heart is full, and we will miss them tremendously.  We are excited for the next chapter in our lives, but we will forever be grateful for the time we spent in the Forsyth NICU and for the lifelong relationships we have developed with so many.  Part of me wishes we could slow down the next two days, but I know they will just fly on by and we will soon be home.  We look forward to many future visits as Noelle continues to grow and change.  Thank you, FMC NICU!!  We love you all dearly!!!

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 112 ~ (March 28th)

Today was full of mixed emotions as we took joy in Noelle's growth and the milestones she is reaching daily and then were disappointed to learn the preliminary advisement based on the results of the contrast x-ray.  I have refrained from saying too much before now since much of this was unconfirmed suspisions, but they have wondered for the last several weeks if Noelle may have a condition called Hirschsprung Disease.  We were uncertain if this really was the problem or if her intestines just needed to mature since her issues have been sporadic and she does not have many of the symptoms, but the x-ray today revealed enough concern that the radiologist recommended a biopsy.  This will mean a transfer back to Baptist; and beyond that, we will not know anything until tomorrow.  We are disappointed for certain since we had Noelle's homecoming within our sights, and now we have reached another setback of an undetermined amount of time.  However, as we processed the initial report, God reminded me yet again that this is not about us and also brought to mind the following blessings:

~He has a purpose in which we can rest and trust.
~Baptist is now a "familiar" place, and we now know some members of the NICU staff and also know where to park our car!!  {If you know anything about Baptist, you know it is absolutely massive!!}
~This is the best children's hospital in this area and is the place where every parent wants their child to be if they need a procedure such as this.
~Our neonatologists will still be the same familiar faces we have known for the past 16 weeks.
~Noelle also has some inguinal hernias & an umbilical hernia {both very common with preemies and especially micro preemies} which will require surgery at some point.  If she has to have surgery for Hirschsprung Disease then they can repair these at the same time, and we will not have to return for a separate surgery in a few months.

We will continue to update as we learn more tomorrow.  In the meantime, we are encouraged with our little girl's progress and are thankful that she continues to excel.  If she has surgery, it will set her back in a few things; so we're grateful for every step she can take now, making it much easier for her to return to her "baseline" after she comes through all of the necessary procedures.

~Trial Run in the Crib~

Tonight she graduated to an open crib!!  She has been maintaining her body temperature quite well over the past few days, and so she is on a trial run tonight.  It is common for babies to go back and forth for a few days between their isolette and the crib, but the fact that she is trying it out tonight is another great step and just shows how she is "growing up."  She weighed in at 1,530 grams / 3 lbs. 6 oz. tonight, and she is eating and growing like a weed!!

~This takes up much less space in the room!~

These pictures make her look much bigger than she actually is.  She is still a tiny little thing, but we're so grateful to God for her stellar progress these last several weeks {and no, she is not as long as the snugly, but she does like being wrapped in it!}.  Thank you so much for your continued prayers.  I know we would grow weary without them, and we appreciate your love and support more than we could ever express in words.

~Snuggled in for the Night~

NICU Day 111 ~ (March 27th)

Noelle had another good and "boring" day today and just continues to cruise along in her progress.  Her contrast x-ray was scheduled, and it actually worked best with the doctor to do it Wednesday evening at 5:15.  I'm not certain how fast we will have the results, but we will certainly keep everyone posted.  In the meantime, thank you for your continued prayers.  We are still learning to trust and wait only upon God, for our expectation is from Him.

We love how Noelle's nurses spend time with her at night when we are not able to be there.  Some of them even come visit her and play with her when they take a break from the babies for which they are responsible that night.  She is going to miss all of them!!

~Taking a bottle from Kayla~

~Talking to Oneicesa~

~You might remember some "Rodeo Giraffe" pictures from several weeks ago which a couple of Noelle's nurses took one night as they took care of Noelle and played with her (Post can be viewed here).  Well, last night was somewhat of a repeat, and we were presented with new Rodeo pictures today from the adventures of last night.  Here are a few of them alongside some of the pictures from a couple of months ago.  We love seeing the changes!~

...and the comparison:

NICU Day 110 ~ (March 26th)

Noelle had a great day today and weighed in tonight at 1,490 grams / 3 lbs. 4oz.  She is beginning to put some fat on those tiny bones, and it is wonderful to see her growing right before our eyes.  Her contrast x-ray is being scheduled for Thursday morning, and we are praying for definitive results/answers from this test so that we know if we are coming home shortly or being transferred for a biopsy/possible surgery.  If she does have to be transferred, I know we will humanly be disappointed and yet still know that God is in control, working out another step in His sovereign plan through our lives.  Thank you for your continued love and prayers.  We have been so incredibly encouraged by your support and outpouring of love to us through this time in our lives.  We look forward to the days and years ahead as we look back on our journey and even more clearly see God's hand of goodness guiding us along His path.  Thank you for being a part along the journey!!

Here are a few pictures from today as we discovered that Noelle loves to swing (in a "big baby" swing this time)...

~Finally, something to watch!!~

~Loving the cozy feeling~

~I'm in here somewhere!~

~It's a hit!~

~Swinging puts me right to sleep!~

NICU Day 109 ~ (March 25th)

Today was a "boring" day, and we are doing as much as possible to prepare for Noelle's homecoming.  We will post more tomorrow after {hopefully} her contrast x-ray is scheduled.  As always, thank you so much for praying!!

NICU Days 107 & 108 ~ (March 23rd & 24th)

We are thrilled that our sweet little girl weighed in at 3 lbs. 2 oz. tonight!!!  She continues to do very well and is simply eating and growing constantly these days.  We are thoroughly enjoying all the time we are able to spend with her each day as well as all the opportunities we now have to interact with her.

The fact that we are parents is becoming more and more real to us each day, and we are excited to soon be taking the next step in that journey and bringing her home.  No major decisions are made on the weekends, so today was a fairly "boring" day; and we are looking forward to Monday and discovering if she is now big enough to be scheduled for the x-ray test on her intestines.  In the meantime, we are waiting and praying and just enjoying watching her grow.  Thank you for continuing to pray!

 ~Many people have sent special items for Noelle, and the ones pictured tonight are just a couple of things that sweet friends have made specifically for Noelle.  The first item pictured is a custom made headband from Chastity Gomez (http://www.etsy.com/shop/EllaBellaCreations11) and the second is a tiny custom made bracelet from Emily Curtis (http://www.etsy.com/shop/EmmysBB).  We are so thankful for the many acts of love for our tiny girl.  Thank you!!~

NICU Day 106 ~ (March 22nd)

We are praising God that our precious little girl weighed in at 3 lbs. tonight!!  Not only that, but they also dropped two of her four medications today as she has now recovered from rickets and her labwork showed improvement in other areas as well.  The only medications she now receives are synthroid (for her hypothyroidism) and iron.  It appears that we are coming down to our final days in the NICU.  Everything hinges on the results of her intestine x-ray next week, but she is doing so well on all other accounts that they really feel that our home going is not so very far away.  The one main thing she must still overcome is the bradycardias (episodes of dropping her heart rate).  This is very common with preemies, and she seems to have outgrown the random bradycardias that she previously had; but she is such an aggressive eater that she sometimes causes herself to choke and drop her heart rate while she is eating.  She acts as if she has never been fed in her life and will never be fed again (although, who can blame her after she has been taken off her feeds so many times!!).  Thankfully, she had no episodes today, and she will have to complete 7 consecutive days of no episodes before she is allowed to leave the NICU.  She may still come home on oxygen; and to be honest, I actually would not mind that.  It would mean some inconvenience in that she would be attached to her cannula and a monitor, but that actually is a comforting thought for making the transition home.  I cannot imagine sleeping the first several nights without her hooked up to anything!!  If she weans off her oxygen before coming home, it will be great; but if she comes home with it, then that will be fine too.  So if all goes well next week, then we may be home by the middle of April!!  Mentally, we are preparing for setbacks (though none are anticipated at this point); but physically, we are in a whirlwind to get things ready for her to be at home with us 24/7.   We know this journey will simply take another turn when we reach that day, but we are excited for this "bend in the trail" and are looking forward to what God has in store for our family as we turn the corner.  Thank you so much for your continued prayers, love, and support!!

NICU Day 105 ~ (March 21st)

Today was a good day but a very long day, and that is to be expected as we trod through these days of growing and waiting to complete the necessary milestones before Noelle can come home.  She currently weighs 1,320 grams / 2 lbs. 14.5 oz. and is continuing to put on weight like a champ.  Tonight as we left and rode the elevator to the first floor, a couple of other people stepped on with us and commented on their long day.  They had been at the hospital all day long...since 8:00a.m.!!  Tom and I had a little chuckle over that one.  In months past, I might have thought the same thing after spending one long day visiting someone at the hospital, but a little perspective definitely goes a long way these days!!  The Lord gave me two encouragements this evening to continue to push me to endure through this journey.  The first was a book on our doorstep when we arrived home.

Stephen and Shannon Conley are friends of mine from college, and their little preemie son, Isaac, just turned one year old.  Shannon reached out to me several months ago when we started on this journey with Noelle as they had lost a daughter and delivered her early, just as we expected to do with Noelle.  Then the circumstances changed and she related to me again when we landed in the NICU as they had only recently come through their NICU journey with Isaac.  It has been a blessing to ask her questions and re-read through their experiences.  I think every preemie family (especially those born at less than 30 weeks) would agree that nothing can truly prepare you for this journey nor can you really understand it until you walk through it.  I know I did not.  I read through Stephen's and Shannon's journey and was concerned and prayed for them, but I had no idea what they were going through physically, emotionally, or spiritually as they battled for Isaac's life.  Thankfully, they have come through that part of the process and are enjoying their sweet little boy. But life at home has not been without its challenges either; and as we prepare for life at home with Noelle, we are thrilled and apprehensive all at the same time.  Caring for a preemie baby is often very different than a term baby; and all the things I would have done or allowed with a term baby have to be reconsidered and often changed or eliminated due to Noelle's situation.  Still, we are excited; and resources such as this will go a long way to helping us handle her at home and create a new "normal" in our lives.  So thank you, Stephen and Shannon.  This book arrived at just the right time and is an incredible blessing!!

The second encouragement came when I called and found out that Noelle's "Uncle Jim" will be watching over her tonight.  Jim has had her many times when she was in NIC 1 but has not been assigned to her since moving to NIC 2, so we were thrilled to find out he will be taking care of her tonight.  He takes such excellent care of her (as do all the nurses, but we just have special connections with some of them), and I will rest easy tonight knowing she is being cared for by him.  This is the only photo that I have so far of them together, so we will have to soon remedy that! 

I am looking forward to calling through the night and hearing, "NICU, this is Jim."  We are so thankful to God for another good day and hope to report the same again tomorrow.  Thank you for praying.

NICU Day 104 ~ (March 20th)

~Chatting with Daddy about his day~

We are thoroughly enjoying watching our precious little girl grow and change right before our eyes.  The changes that have been made even in the last two weeks are remarkable, and we are so grateful for how God continues to work in her tiny little life.  She continues to do well and make small strides in her ability to maintain her body temperature and wean on her oxygen support.

~Comfy in ruffles~

 Tonight's pictures are especially for Grandpa and Grandma Wagner who sent her some sweet little outfits.  After washing and drying them, she almost fits into this one!!  We thoroughly enjoyed dressing her in this tonight after her bath and seeing her starting to grow into even the smallest baby clothes.  Thank you, Grandma & Grandpa!!  She loves them!!

~Snuggling with Daddy~

Thank you for continuing to pray and rejoice along with us!!!

~Starting to truly fit in clothes!~

NICU Day 103 ~ (March 19th)

Tonight's post will be a short and sweet update as we are working on our taxes and starting the checklist of what must be completed before Noelle comes home.  She is continuing to do very well overall and weighed in at 1,310 grams / 2 lbs. 14 oz. tonight.  We are so very close to 3 lbs. and expect to make it there by the end of this week!!  The current plan is simply for her to grow; and hopefully by next week, she will be big enough to repeat the contrast x-ray test on her intestines so that we can move forward from there.  Again, our prayer is that this x-ray will be definitive so that no further unnecessary procedures will be performed to determine whether or not there is a problem.  Our other prayer is that she will have grown and matured enough to be past any intestinal issues that are common with preemies (and especially micro preemies).  We would also ask prayer for us as we are balancing everything we need to get done at home (before she comes home) alongside spending time with her and taking care of her at the hospital.  We are very ready to finally be at home with our little girl and look forward to the time when she can be with us every moment of the day and night.  Thank you so very much for your continued prayers.  We look forward to sharing how God continues to work tomorrow.

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 101 ~ (March 17th)

Noelle celebrated being 100 days old today and wishes everyone a Happy St. Patrick's Day with a special video surprise (and yes, she is just a little bit Irish from her mommy~maiden name: McDowell).  Enjoy!!

NICU Day 100 ~ (March 16th)

How do you celebrate day 100 in the NICU?  My first thought was to bake 100 cupcakes for our NICU family to enjoy (Yes, my husband called me crazy.  Maybe I will do that on day 100 of being home!).  My second thought was to take a good nap.  Neither happened, and it was a busy, "normal" day but one filled with grateful hearts for how far God has brought us along in this journey.  It is easy some days to try and look ahead and figure out how much longer this particular part of the path must continue, but this makes us weary in the process.  Days like today make us stop and be thankful for each step that has already been taken and praise God for His incredible goodness to us.  Noelle celebrated today by doing the following things:

~Wearing a pretty outfit from Grandma McDowell (it almost fits her now!) and headband from Chastity...

~Getting her picture taken with Dr. Tatum (the neonatologist who has been the face of comfort for us since before she was born.  We cannot say enough good things about this doctor who has taken such wonderful care of our daughter.  She has not made it easy on him!)...

~Getting her picture taken with her nurse, Jennifer, who was the first one to let Mommy hold her (in her hands for a few short moments) just a couple of days after she was born...

~Taking a bubble bath (which she really liked this time!)...

~And settling in for the night with a bottle...

While today marked day 100 in the NICU, she will actually turn 100 days old tomorrow at 11:27a.m.  We thank God for each day with our precious daughter and look forward to the days He allows us in the future.  Thank you for praying.

NICU Day 99 ~ (March 15th)

Throughout these past few months, many people have let us know they are praying for us or thinking about us in different ways.  People have reached out with notes of encouragement, meals, blankets, outfits, gift cards, and more.  Each and every word or act of kindness is a blessing to our hearts; and more than anything, the fact that people love us and care enough to pray for our family means more to our hearts than we could ever express in words.  However, there are a few instances which have brought a particular kind of smile to our faces (a type of smile for which I do not have a word to describe, but which I am sure you will understand...).  It is the words and actions of children through this process.  Around the world (literally), children who know us and children who have never met us are thinking about Noelle and praying for her, as only children can do.  There are so many things we love about this--the messages we receive from parents letting us know that their child asked them about Noelle that day, or the child who walks up to us at church and asks "Noelle's Mommy and Daddy" how Noelle is doing.  So many have reached out in different ways, and we are ever grateful for the love and concern from Noelle's "peers."  Even the 4 year old daughter of one of our nurses has taken a great interest in Noelle and likes to get special things for her.  This Noah's ark bank was her latest find, and it has been turned into a tricycle fund for Noelle.

~Noah's Ark Bank~

~In Scale at the Computer Station~

 A couple of days ago, we received a sweet letter from a family we have never met and included were three more letters from their oldest children.  Of their own accord, they each wrote a note to us and let us know that they were praying for our baby and included a special gift and a drawing (my favorite!).  We hung the drawings on Noelle's bulletin board in her room today and so appreciate the evidences of love that are filling her personal space in NIC 2.

~Sweet Drawings from Children...~

~...Hanging on Noelle's Bulletin Board~

 I am still catching up on thank you notes; but please know that if you are praying for us or have shown us an act of kindness in any form, we are grateful from the bottom of our hearts and only wish we could truly express our thankfulness adequately.  We thank God for every remembrance of you.  The picture below pretty well comprises Noelle's day of rest (I think she was tuckered out from all of her socializing yesterday!). 

~Tiny, Tired Girl~

We so appreciate your continued love and prayers for all three of us.  God is using you in a mighty way to accomplish His will in our lives, and we could not be more grateful.  Thank you.

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...