Giving Thanks Challenge ~ {Day #14}

Thanksgiving Challenge ~ Day #14

Topic: Noelle
Title: A Special Letter

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}

As the submissions for Noelle's birthday book have been arriving in our inbox, it has been humbling for me to once again be reminded of how many people have loved and prayed so earnestly for our little girl.  Some are friends from years past, others for only a short time.  They hail from all corners of the globe; and there are many whom we have never met face to face, but the miracle of Noelle and the bond of Christ have created a connection.  Whether a short note of prayer or a long letter filled with memories, each submission is precious to us as we create this memory book that is so dear to our hearts.  I have realized that this book is not for Noelle alone, not even for our family alone.  These notes and letters, written with careful thought and much love, are a reminder of God's continuing miracles and grace in this life.  So as some have requested, we will be sharing the submissions from time to time so that all may be encouraged by them.  We truly appreciate each and every one and thank you from the bottom of our hearts for the time and love you have so graciously poured into this effort.  Tonight, I share one that we received today that immediately transported me back to the moment Noelle was born and the incredible uncertainty mixed with both joy and sorrow that were felt that day.  As I read this, tears filled my eyes and clogged my throat, and I was reminded once again of the amazing grace and miracle that God granted to us.  We are so very blessed...

Birthday Book Submission from Christina Burton, RN (FMC NICU):

~Christie & Christina (Our OR NICU nurses) holding Noelle on Discharge Day~

 

Dear Sweet Noelle,

I was one of the RNs in the OR the day you were born.  I had been updated on your mother’s history and what had been going on during her pregnancy.  What I “assumed” was that you would be delivered and after you were assessed by the NICU team, we would give you to your parents so that they would hold you while you passed away.  Because of your estimated size at birth, I “assumed “  we would not be able to maintain your life with the equipment we had in the NICU. 

Your birthday was yet another day in my life that has taught me that I cannot “assume” anything when God is in charge.  You were so very tiny when the OB surgeon lifted you from your mother’s uterus.  I stood at a distance while Dr. Tatum and other members of the NICU team began working with you.  I would be lying if I said that I thought you would make it out of the OR alive……I truly “assumed” that you were too small.  As the team continued to work on you, I saw you move around and heard you make a very small cry.    Dr. Tatum succeeded in getting you intubated and we took you to your bed spot in NIC1, bed 3.  I will admit that again I did not believe that you would survive much longer once we got you to the NICU.  I didn’t feel like the equipment could sustain your tiny body.  How anyone was ever able to insert an umbilical line in your cord I did not understand at that time.  I must admit that during your admission (done by your admit nurse Amanda Lamm RN) I questioned whether we were doing the right thing.  I knew that your parents had already been told that you would probably not survive in utereo much less survive long outside the womb.  I wondered if it would be easier if you had passed away right after birth rather than get your parents’ hopes up, and then they possibly have to make difficult decisions about what to do.

As the days went by and I got to know you and your wonderful parents, I realized that my “assuming” was wrong.  You got very sick and gave the NICU staff and your family many scares.  But through it all, I grew to love you and pray for you to survive.  I learned more about your story and what a gift from God you really were.  I learned about the love your parents share and the love they had for you, even before you were born….no matter what.  What I had “assumed” after many years of working in the NICU was all proved wrong.  I had lost sight, those many years in the NICU making me somewhat jaded and hardened at times, that miracles do happen every day.  You Noelle, are a true miracle.  A miracle from God, given to two of the most God loving people I have ever had the pleasure of knowing. 

I am so glad I was in that OR the day you were born.  I am glad I got to know you and your parents.  I am glad that you survived against all kinds of odds and “assumptions”.  I am glad that God is using you and your parents as a living testament of His love for us all and for the power of prayer. 

Noelle, I am grateful that you and your parents came in to my life.  I feel privileged to have been a part of the beginning of your life.  I know that God is always present in my life, but I am so thankful that you came along to remind me to not “assume” and to remember that ultimately, no matter what, God is in charge!  Funny how a little 12.55oz miracle baby has helped bring so many people to God and open up their hearts to allow Him in.

I look forward to continuing to watch you grow and cannot wait to see what else God has in store for you and all of those around you!

Love,

Christina Burton RN

Forsyth Medical Center

NICU

***There are only 2 days left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are putting the book together and enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

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 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 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 71 ~ (February 16th)

Today was pretty uneventful overall as Noelle continued to adjust to being in a new place.  While she definitely could not be termed as a fussy baby, she cries more than I have seen her do before, and it just seems to take longer to get her settled into comfortable positions.  I think a lot of it is the bed is made up differently than to what she is accustomed, and the acid reflux makes her more uncomfortable in certain positions.  All in all though, she rested better today, and I held her for periods of time in the morning and afternoon, and that seemed to help settle her down as well and give her something reminiscent of our familiar routine.  Her eyes did not look as red and swollen today, and the one that had bled some originally seems to have cleared up....just in time for another eye exam in the morning.  We are really praying for some definitive answers from this exam tomorrow morning.  They could say that she needs the surgery right away based on the progression they see, or they could choose to continue observing her (in which case, we will request that she continue to be observed at Forsyth).  Thank you so much for praying for us.  We need a lot of wisdom and patience right now as we have had to advocate on her behalf the last two days like never before.  We will update as soon as possible after her eye exam tomorrow and let you know how things are proceeding.  In closing tonight, I'm just going to list some of the blessings that I have been focusing on the past couple of days as we try to adjust to all this change.  God is teaching me to be content right where He places me, and to rest in Him yet again.  Thank you for also praying with us to that end.

Current Blessings:
~Noelle has the same Neonatologists who have been seeing her since day one.  While the rest of the medical staff/care is different, her head doctors are the same, and it's comforting that they know her and her history and can continue to diagnose accordingly.
~The Neonatologist who has been following her the past two days is the same one who toured us through the NICU 3 days before she was born, who was at her delivery, and who has been with her during her two most difficult sick periods since she was born.  We were so happy to see his face on Wednesday morning!!

Ultimately, we know that God has a purpose through this, and while we do not understand at all, we can continue to rest in His goodness.

Quick Update

Noelle just turned 29 days old, and it looks as if she is turning the corner.  Only time will tell, but she started doing better last night, and is satting better with her oxygen saturation. They actually were able to start weaning her, and she is down to about 85% on her oxygen, so that is a good sign.  They will do an echocardiogram today to see her heart function and determine if it is responding, but clinically they are already seeing good signs.  As the doctor put it this morning, "the last two days we were headed downhill, and now it seems we are heading back up."  They still say it will be some time before she is fully recovered from this particular issue, but everyone is very encouraged at what they are seeing.  Thank you for continuing to pray!!

NICU Day 28 (January 4th)

Today has been an incredibly difficult day.  I walked in the NICU this morning to see her sitting at 100% oxygen again and her saturation level still dropping.  It was reminiscent of Saturday all over again only she has not recovered as well today.  Saturday was a "bump" according to the doctor but he described today as a "hill" possibly turning into a mountain.  On Saturday, we knew that her ductus was open and causing issues, but today it is closed and they are unsure as to what is wrong.  She could be fighting infection or she could be struggling with renal issues.  They checked her abdomen for abcesses and NEC but those do not seem to be the issue.  They do think she may have pulmonary hypertension but it still is not certain.  As of an hour ago, the doctor said the next 24 hours are "touch and go" and they have given us a room here at the hospital to stay the night so we can be nearby.  Tom took the day off of work after they called us early this morning that things were not going well and has been at the hospital all day as well.  Noelle has had different procedures, x-rays, ultrasounds, etc...going on since 11:00 last night when things first started going downhill, and she has been awake for a good part of this even through most of today.  It's encouraging to see her alert and active and still fighting the nurses when they do a procedure--that is a good sign, and yet she needs to rest.  My heart broke today as I talked to her and she looked at me with eyes wide open.  It hurts to see her lying there with multiple things poked into her and tubes and wires all over the place and machines beeping; and yet as I poured my heart out to my heavenly Father tonight, I was reminded that He understands my heart beyond measure.  Not only did He watch His Son die, but He watched Him in agony leading up to His death as His Son begged Him to "let this cup pass from me."  What parent would not give in to their child's earnest pleading like that?  And yet God did not.  He loved us so much that He still gave His only Son so that I might have eternal life.  My hurt and pain right now can't even begin to compare to His.  And so we leave our hearts in His hands because just as He saw the "bigger picture" with His own Son and carried His plan through for His glory, so He will do with us.  This does not mean that everything will be okay in human terms, but it does mean that everything is okay because His plan will be accomplished, and He will be glorified.  Does that make our hearts hurt less as we travel this road?  No, but it does bring peace to know our Savior is in control and is with us each step of the way.  Thank you for continuing in prayer with us.

12/5 Echocardiogram Update

Today was not very successful in the medical sense.  Noelle was curled up with everything in front of her heart and refused to budge except for a small wave of her hand once in a while.  Of course she was moving plenty about an hour afterwards!!  So, we have to go back next Tuesday for another echocardiogram.  They were able to see a few things, and what they saw seemed to be "normal" but they said to take that with a grain of salt since none of their pictures were clear.  Still, it was encouraging to hear that nothing is glaringly wrong as of yet.  There is still fluid around her heart which they want to monitor closely, but sometimes babies are born with this and as long as it doesn't increase or develop in other areas, they tend to leave it alone and the babies are usually fine.  After the echocardiogram, we then met with a neonatologist who gave us a tour of the NICU at Forsyth and sat down and talked with us at length about possible outcomes and paths to take with our future care.  The information was scary and overwhelming in a lot of ways as there is still a long road ahead if Noelle is born at such a small size, even without heart complications; but it was also encouraging to see the level of care which they extend, and the communication between our doctors this past week (after switching all our care over to Wake Forest...long story) has been incredible.  The neonatologist already knew Noelle's name!!  Ultimately, we know that God has sustained us all this far, and Noelle still rests in His hands whether she is in the womb or in the NICU, and He alone will determine her outcome.  In the meantime, we have to discuss and start making decisions about how soon we will enter the hospital and begin constant monitoring of her heart and blood flow along with some other things.  We're hoping to put it off for at least a couple more weeks and let Noelle grow and be able to make some plans for that time period, but for now we'll just keep going one day at a time and see how things progress.  We'll continue to keep you posted as we find each new thing out--it's an amazing journey for certain!!  Thanks again for praying...I know we say that every time, but you have no idea how that encourages our hearts.  We know that God's plan is already determined, but it still is an incredible encouragement to know that others are bringing Noelle, by name, before His throne.  Thank you.

Sincerely,

Tom and Jill