NICU Day 84 ~ (February 29th)

Noelle had a good day today, all things considered.  She is up to her full feeding amount again and seems to be tolerating it well so far.  Today was basically a resting/growing day, and we are thankful to have an uneventful day after the events of the past couple of weeks.  A lot of people have wondered what I do all day...if I just sit by her bedside at the hospital, if I have things to keep me busy or if I get bored, and the answer is really none of the above.  Each day is different and often I plan my schedule for the day, only to have it completely changed around depending on what specifically is going on with Noelle; but in this post, I will give a little bit of an idea of what one of my days might look like.

The day mainly revolves around the pumping schedule which is every 2-3 hours, even through the night.  It's important to keep up with this so that we can provide the best nutrition possible for Noelle in order for her to grow.  Many days I am at the hospital around 9:00 or so for morning rounds.  This is when the medical team reviews Noelle's current status and goes over the care plan for the day.  A lot of things are discussed during this time, and it is the best time for us to be updated on everything that concerns her.  We have learned a lot through 3 months of rounds and developed relationships with much of her care team.  Rounds can happen anytime between 9:00 and noon, so I'm usually there for at least a few hours.  Of course the pumping schedule continues there but in between and around that, I am usually spending time with Noelle in the form of helping with her vital signs, changing her diapers, feeding her a bottle or nursing her, or holding her (usually Kanga Care ~ skin to skin).  I try to head home in the early afternoon to take care of things there such as bills, laundry, or cleaning or I run necessary errands.  Often Tom will then pick me up on his way to the hospital after work, and we will spend the evening with her, participating in many of the same things which I did in the morning.  Honestly, that is an "ideal" day, and one of those has not happened in a while.  I had planned a day like that yesterday, but then one thing after another kept happening which prevented me from going home, and so I was at the hospital all the way through the day until we left that night.  A lot of days end up like that especially when something is going on with her and they are running any kind of test.  So honestly, rarely do I get moments to just sit by her bedside and catch up on something.  It happens from time to time, and I do have things with me "just in case" but the majority of the time, I am busy in some way; and the older she has gotten the more I have been able to do with her and for her.  The nurses are really fantastic about involving us parents as much as possible and teaching us how to do so many things for her that it really makes us feel like parents even though we live life in the NICU right now.   Thank you for praying for Noelle and also for us as a family.  It's certainly trying some days as we feel like we are constantly trying to settle into a new "normal" that just will not stay consistent enough in order to really adjust; but we would not trade one moment with our precious little girl for any of that.  FOX 8 ran an update story on her tonight and will follow up again when she finally gets to come home.  Below is the link if you would like to see it.  (One correction to the story....we were originally being seen at Women's Hospital/Moses Cone for our pregnancy, but we switched our care shortly before she was born, and Noelle was born at Forsyth and has been cared for in the NICU there her entire life except for the one week she was at Baptist/Brenner's for her eye surgery.  We cannot say enough about our Forsyth family and are grateful each day that we are there).  I hope we can report another "boring" day tomorrow!!

http://myfox8.com/2012/02/29/buckley-report-baby-noelle-update/

NICU Day 83 ~ (February 28th)

Today was an encouraging day overall.  While we did not receive actual answers as to what is going on with Noelle's tummy, her doctor did develop a care plan after consulting with the surgeon at Baptist, and it helps to have some direction for the next few weeks.  The surgeon felt she was too small to even begin diagnostics and so the plan is to just let her grow through the next month or so and then re-evaluate and see if the issue is still present and needing attention or if it resolves itself with her developmental growth.  Obviously our prayer is that God would just heal any issues that might be present, but we also know that He may have other plans.  We are possibly already facing one or two surgeries for her later on down the road (after she has been home), but if this particular issue ends up being a problem, then they will have to address it before she is allowed to come home as they cannot take the risk of her intestines perforating.  So, we can settle in again and just focus on the growing process for now and hopefully deal with this issue later.  They are helping her to keep her system cleared out so that we don't experience what happened last Saturday, but she was able to start eating again today, making us all happy!  She also had a follow up eye exam which was fantastic!!  The doctor reported that her eyes look much much better, and she is on her way to doing very well with her eye sight.  It was such an encouragement to hear that and just have another confirmation of God's guidance with her health and care.  We know He will continue to do so with the other issues we still have to face in the days ahead.  She now weighs 2 lbs. 2 oz. and will hopefully start cruising along with her growth now that she is eating again.  Flu season restrictions require that we wear masks at all times in the NICU, but thankfully we are still allowed to hold her and do all of the normal daily care things we were able to do before the restrictions were put in place.  We look forward to hopefully having a few "uneventful" weeks of Noelle's growth and improvement.  Thank you for your encouragement and for continuing to uphold us in prayer. 

NICU Day 82 ~ (February 27th)

Today was more of the same from the last two days and no real answers as of yet as to what is going on with Noelle's tummy.  This could be normal for her or it could be something more serious which will require treatment.  They ran a test today to try and determine if she has any blockages and are having the images evaluated at Baptist by the pediatric surgeons tomorrow.  They have brought up some possibilities to us of what it might be; but until we have further details, I will refrain from listing "ifs."  Our prayer right now is that the surgeons tomorrow will be able to tell from the x-ray images if there is an issue or not.  This honestly may be typical for her and something that she will outgrow.  While she has had this issue present itself in the last few months, it certainly has not been constant; and she possibly just might have a sensitive stomach to which we will have to pay close attention.  However, she might have an issue which may require future surgical help.  Either way, we continue to leave her in God's hands for Him to work His good will.  That is easier said than done, but it really is all we can do.  He has brought us this far, and He will not forsake us now.  In the meantime, she is still not allowed to eat so that is another reason we are hoping we can get some answers tomorrow.  The poor little girl is hungry!!  On a very positive note, she has been weaning extremely well on her oxygen.  She actually has been sitting at 21% (which is room air/what we breathe), and her flow has been reduced to "low flow" and just keeps getting lower.  Our tiny girl may be breathing without any assistance at all in the next few days!!  She is really starting to act more her age and that includes little things like the smile reflex.  She especially does it when her daddy is talking to her, and it is really sweet to watch.  It's tough to catch on camera since it happens so quickly, but we caught this snapshot of her today.  Thank you for keeping her in your prayers!!

NICU Days 80 & 81 ~ (February 25th & 26th)

The last couple of days have been a little up and down again as we "climbed another small hill" with Noelle.  Her little tummy has always been on the large side, but yesterday afternoon it was distended a lot more than what is even normal for her (her nurses who are used to her tummy size were even scared that her intestines had possibly perforated).  She has had more x-rays on her tummy than I can remember through the past few months, but they did another one and thankfully determined that her colon was healthy, but there was a lot of trapped air that needed to move through.  So, her feeds were stopped yet again, a tube inserted down her throat, and glycerin suppositories were given to help drain the air.  In turn, it also meant that another IV had to be inserted so that she could receive fluids while she was not able to eat.  She typically is not a fussy baby, but she does cry when she is being poked and moved around sometimes.  However, last night, she was nearly inconsolable for quite some time.  She had been awake for hours and was overly tired and had also figured out that she was hungry.  It tore at my heart to see her crying so hard and yet be helpless to give her what I knew would comfort her.  It's a lesson learned in parenting in that sometimes we cannot give our children something good because it is not good for them at that present time.  I know God does this with me, and I do not often recognize it at the time.  Going through this with Noelle has shown us that God has a greater good which He is working out even while humanly it seems like a "bad" situation.  I shed tears with my daughter last night as I watched her struggle, but the mom in me still wanted and did what was best overall for her, and I am so thankful God does that for me over and over again even when I "cry" and do not understand.  Noelle finally fell asleep last night and slept almost straight through the night and then continued to do well today.  Her tummy is much better than yesterday and hopefully they will be able to start her feeds again sometime tomorrow.  We enjoyed holding her and spending time with her today and are praying that she gets past this issue very soon and continues to thrive again.  We so appreciate your continued prayers for our little family!!

~Here are some pictures of Noelle from yesterday before everything happened with her tummy.  Her nurse dressed her up for the day and let her wear her little doll shoes from her Aunt Laura and Uncle Josh.  We're excited to say that she has nearly outgrown them!!~

NICU Day 79 ~ (February 24th)

February 24, 2012 ~ Noelle's original due date.  Instead of celebrating her new birth today, we are celebrating 11 wonderful weeks with our precious miracle.  It was the day before Father's Day last year when we discovered I was pregnant with Noelle, and we were beyond excited that God was growing our family.  Six months ago, we were told this day would never arrive, and we thought it would go down in our journal as one of anticipation which was turned into sorrow.  For weeks, we planned for and expected Noelle's stillbirth while still hoping for a miracle, and God in His incredible goodness granted just that...our tiny Christmas miracle.  The road since then has been rough and filled with both incredible anguish as well as exhilarating joy as we have watched Noelle struggle and fight for life and then reach a point of thriving and growing like a "normal" baby.  I cannot even begin to describe the gamut of emotions felt today, but the summation of them was extreme joy and deep thankfulness to God for all that He has graciously done.  We do not deserve our sweet little daughter, but we are so grateful He has allowed us to have her during this time.  Noelle celebrated today by "being a big girl" and taking 3 bottles...

having normal wake/sleep times...

and wearing her little monkey sleeper from her grandma (McDowell).

The actuality of her someday being with us at home is becoming more and more real each day.  Thank you so much for sharing in our sweet joy today and for praying for our precious little girl.

NICU Day 78 ~ (February 23rd)

Well, flu season was officially declared this afternoon in the NICU which means no visitors except for parents until they declare flu season to be over.  We are just thankful that it has taken so long for cases to pop up around here.  It has been so incredibly warm that people have not been inside as much passing along their germs, and so the flu season around here this year should be much shorter than in the past.  This is the latest they can ever remember having shut everything down!!  Noelle had a great day though and just seems to be cruising along.  She is taking her bottles like a champ, and they condensed her feeds again today, so she is almost to the point of getting them just like a term baby (every 3 hours over approximately 30 minutes).  Then once she is taking all of those by bottle and not just by feeding tube, she will have completed one of the requirements for going home!!  It's amazing how far she has come in just the past two days!!  She is finally back to weighing 2 lbs. again.  She had dropped weight while she was gone, so it is good to see her getting back on track and starting to take off again with her weight.  She is starting to be awake for longer periods of time, and today we noticed that she can definitely see bold pictures in black and white.  Her nurse taped a picture with bold black lines to the top of her isolette, and she spent about 40 minutes on her back, completely content, just looking around and especially at that picture.  Most babies need tummy time....Noelle needs back time!!  I'm posting a couple of videos of her from today.  In one of them, you can hear her sweet little cry...I love it!!  Thank you for sharing in these fun moments we are now having with her and for continuing in prayer for our precious little girl.

NICU Day 77 ~ (February 22nd)

Noelle continued to settle back into "home" today and did extremely well.  I expected it to take a few days to get her back into the routine she had before we transferred, but she is already cruising along and even took her entire bottle tonight (three hours worth of food).  The most she has ever taken (the morning of the day we transferred) was about two hours worth, so for her first bottle in more than a week to be the full amount was pretty exciting to us.  Oh, and I cannot believe I forgot to mention this yesterday, but she is now in NIC 2!!!  We'll be here for a while, but we are one giant step closer to bringing her home with us, and that time is becoming more and more real as each day passes.  We had a great time holding her and loving on her tonight.  This is what she seems to do lately whenever we get ready to leave at night...she pops her eyes wide open (and of course then we can't leave)!! 

She is perfectly content to just look around, lie there peacefully, and listen to us read stories or sing to her on her recorder.  I think she is really enjoying not being poked for a blood sugar every few hours!!  Tonight she will be getting the royal treatment with a "spa" bath, so she should sleep really well after that.  Thank you so much for continuing to pray for our sweet little girl.  We look forward to sharing more "fun" times with her!!

NICU Day 76 ~ (February 21st)

If yesterday we were weary, then today we are on top of the world!!  We are back "home" and could not be happier to see our tiny girl so comfortable and already settled back into her surroundings.  The transition back was an absolute breeze, and all afternoon she slept deeply (like I have not seen all this past week).

~Pleasant Dreams~

We had planned on going in today and speaking with our neonatologist about the events of the past week and requesting to be transferred back, but we did not have to do any of that.  Noelle's eye exam was complete before 8:00a.m., and the results were very positive; so when the doctor came over to meet with us, she immediately told us that Noelle was cleared to go back!!  We were surprised because the opthamologist had told us not to expect any improvement before next week.  God was so good to us though and had already clearly paved the way for us to return "home" today.  We arrived back early this afternoon, and she obviously was so comfortable being back in her onesie and snuggled in again.  She slept extremely well and thoroughly enjoyed being free of heel sticks and IV fluids.  Now she just needs to sleep, eat, and grow!!  We truly believe the requirements she has to meet for coming home with us will fall into place as she gets bigger and puts on some weight.  She has been breathing really well the last couple of days and has weaned on her oxygen nicely.  The next few days, we'll be trying to get her back on track with her feeds and starting up her bottle feeds and nursing again.  

 ~Snuggling with Daddy~

We thoroughly enjoyed our time with her tonight.  She was so calm and opened her eyes wide like I have never seen with her before!!  I could even see the iris in her eye, whereas before they have always just looked like black spots.  I couldn't quit snapping pictures, so here are a couple:

 ~Sweet Baby Girl~

 

We were welcomed back with arms wide open, and we cannot say thank you enough to the people who facilitated her transport,  to you for your prayers, and ultimately to God for His sovereign hand through this process.  I think all three of us will sleep well tonight!!

NICU Day 75 ~ (February 20th)

Wow.  Day 75.  If I had one word to sum it up, it would be "weary."  This past week has been the longest yet, outside of the week Noelle was so sick with her heart issues.  We have sincerely tried our hardest to adapt to our new surroundings and deal with her current situation as best as possible, but it seems that circumstances happen almost each day that make us anxious to get back to Forsyth.  Of course none of this is intentional, and all of the individual people which we have met or worked with here are really nice, but when it comes to your baby, "unintentional" just is not okay.  Everything should be done intentionally and should be closely watched.  The NICU is a field where human error just is not and cannot be tolerated like it might be in other fields.  Today, it was an infiltrated IV, and I cry every time I see her poor little arm, swollen to twice its normal size.

~Poor Little Swollen Arm~

Of course some of these things "just happen" at times, but often (like today), they could have been avoided had things been watched more closely or done differently.  So please pray for us as we talk with our neonatologist tomorrow about transferring back to Forsyth and having her monitored from there.  The same opthamologist would be examining her eyes in either place, and although it would mean a transfer back if for some reason she needed a repeat surgery, this seems less traumatic to us in light of the entire picture.  Please pray for gracious spirits and wisdom as we seek to have our tiny daughter in the best place possible for her care and growth.  Is God still sovereign over all that has happened?  Yes indeed.  However, that does not mean we have to stand idly by and let "whatever" take place.  I especially hate being put into positions to deal with things like this, but I am beginning to learn what the term "mother bear" means, and while we do not like the position, we will do whatever necessary to insure the best possible situation for Noelle.  Thankfully, God already knows what will happen tomorrow and how this will play out, and we can continue to rest in Him.  Thank you so much for your prayers.

NICU Day 74 ~ (February 19th)

While we would not term today as "rough", it certainly was not an "easy" day in the NICU.  When we called and checked on Noelle this morning, they had stopped her feeds due to the amount of residual she'd had through the night (although I strongly felt a lot of this was possibly positional....I had requested for her to be put on her tummy through the night but it did not happen).  She also had jumped up 70 grams (obviously due to all the IV fluids), and her blood sugar had jumped up a lot from where it had been previously.  We went straight to the hospital for rounds so that we could talk to the doctor ourselves regarding her care.  Thankfully, her doctor was on top of things and already prescribing what we were requesting when we walked in the door today.  Still, things have still not gone quite as we had hoped.  The one main positive thing from today was that she was extubated and put back on the nasal cannula.  She definitely seems more comfortable having the tube out of her throat, and it was nice to see her take another step toward getting back to her "baseline" of where she was before she was transferred.  They still have not started her feeds as of yet,and obviously this has a domino effect.  Our prayer is that sometime tonight, she will be able to start back on her feeds and decreasing on the IV fluids and just getting back to normal.  Please pray for wisdom and patience for us as well.  Due to her first few days after being transferred and events that happened, we have definitely become more assertive regarding her care and it is difficult at times to know how hard to push for what we feel she needs or how much to trust the medical staff in these situations since they just do not know her as we do.  One step at a time, we hope she continues to recover from the surgery and get back to her normal self and start growing again.  I hope we have even better news to report tomorrow!!

NICU Day 73 ~ (February 18th)

 ~Sweet Baby Girl (Headband: courtesy of Chastity Gomez)

Noelle had a pretty good day today and was able to rest most of the time...well, in between the eye drops every hour and the heel sticks to check her blood sugar almost every hour.  That was the main struggle today--her blood sugar.  It was pretty low all day while they adjusted various fluids, but finally tonight it seemed to be back in normal ranges and stabilizing.  We are very grateful for that since "central line" was mentioned as a final resort if they could not get it stabilized.  She has not had that in weeks, and we do not want that being put back into her.  We're praying that her blood sugar continues to stay stable so they can start increasing her feeds and getting her back to her "baseline" where she was before all of this started on Tuesday.  She has not gained any weight this week, and she needs her food in order to be able to start growing again.  She has been able to wean down on her ventilator settings today, so hopefully she will be extubated sometime tomorrow.  

 ~Teddy Bear IV Tape~

While she did sleep most of the day, she certainly was not out of it and was her feisty self, pushing back against things being done to her.  It is nice to see that side of her again and know that she seems to be feeling better.  The swelling and redness in her eyes is already decreasing, and she is just looking more comfortable overall.  I hope we can report tomorrow that she is off the ventilator and increasing on her feeds again and getting back to where she was originally.  Thank you for continuing to pray!!

NICU Day 72 ~ (February 17th)

Thank you so very much for all your prayers today as Noelle went through her eye surgery.  We spoke with the opthamologist shortly after it was done, and he said they were able to get an even better look at her eyes after she was sedated, and they were a little worse than they originally appeared.  He said that the surgery was definitely the right choice and that they felt they had caught the issue at just the right time.  We talked through some further logistics with him such as what to expect over the next few years and whether or not the surgery would ever need to be repeated (it is possible it may need to be repeated at some point); but for now, he was very happy with how things had gone and expects her to do well as a result of today's procedure.  It was hard to watch her get wheeled away to the OR today; but she was in great hands, and we were very comfortable with the doctor God provided to care for her through all of this.  She now receives drops in her eyes every hour for these first 24 hours and then the dosage slowly backs down from there.  She is intubated and on the ventilator at this point, but she is doing very well with that and will probably be off of that within the next couple of days.  They told us to expect her to sleep for the next day or two after coming through anesthesia, but only a few hours after coming out of surgery, she popped her eyes open!!  She was pretty "zonked" otherwise and not moving around much, but she was definitely awake and recognizing our voices again.  We actually just checked on her a bit ago, and she had somehow worked the tape off her face around her tube, so they had to reposition that again for her.  She seems ready to extubate herself already!!  We're so thankful to God that she is through the surgery and appearing to do so well.  They will follow up tomorrow and then on Tuesday but do not expect to see much progress within that period of time, so the "telling" eye exam will be one week from Tuesday in which we expect to also get the clearance to go back "home" to Forsyth.  We are already in countdown mode and cannot wait to get her back to her original environment.  The staff at Baptist has been very nice; and after today, we were especially grateful for the care she received, but we are also very ready to get her back into her normal routine in familiar surroundings with the people who love her.  God was so gracious today in giving us a definitive path to walk, and we cannot thank Him enough for that.  Thank you for lifting us up in prayer all day today.  We had true peace through this process and knew that we were far from being alone through this procedure today.  We will share some pictures and hopefully more good news tomorrow!!

Noelle's Eyes Update ~ (February 17th)

Noelle had her follow up eye exam this morning, and based on that, they have decided to send her for laser eye surgery this afternoon between 1:00 and 2:00p.m.  The surgery will take a couple of hours from start to finish, and she will be intubated and sedated.  Our prayer for her is that she tolerates everything well and that the surgery does not overly stress her yet again.  As far as the surgery, our prayer is that it is successful in stopping the growth of the extra vessels and tearing the retina from the back of her eye, causing blindness.  This surgery usually is very successful, and they feel they have caught the issue early.  We're very thankful that God has revealed some purpose in being transferred here.  He did not have to do that, and He could have had us wait here indefinitely, but He graciously did not make us walk through that this time.  We have a revealed purpose in being here, and we also have a time frame in which she can be transferred back to Forsyth, provided everything goes well with her recovery.  Regardless of how the surgery goes, she still could have eye issues the rest of her life...it's the life of a preemie, and some have problems and others have none.  All in all, it honestly has been one of the least of my worries in light of all the issues she has faced or could have faced in the past ten weeks.  My heart would certainly grieve if Noelle could not see and experience things normally, but in comparison to the heart issues they thought she originally might have, this seems to pale.  I'm probably more nervous today about how she will handle the intubation and anesthesia.  Either way, we're grateful yet again for how God orchestrated the moving of our care just a couple of weeks before she was born.  Could He have prevented these issues from the start?  Of course.  But this has how He has chosen to work...through medicine, and we're again thankful that we ultimately rest in His hands.  Thank you for praying along with us.  I know we keep saying that, but I simply cannot seem to find other words that would express our deep appreciation for everyone's love, care and concern and ultimately prayers.  Thank you.

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.

NICU Day 70 ~ (February 15th)

This post will be short and we'll provide more details tomorrow after we get some rest, but Noelle finally seems to have settled into her new surroundings after a rough first night.  She is finally back on full feeds and has weaned down on her oxygen to nearly the levels she was at before being transferred.  They have decided to repeat another eye exam on Friday and from there hopefully determine whether she is going straight to surgery or whether they are going to keep her longer for more observation.  We will provide a more detailed post tomorrow but just wanted to let everyone know that she is okay right now.  Thank you so much for praying for us.

NICU Day 69 ~ (February 14th)

Well, our Valentine's Day ended up being pretty rough, to say the least.  It started out well with no changes being made to Noelle's care, and she had a good morning although her acid reflux was still bothering her quite a bit.  Still, I was able to hold her for a short while and spend some sweet time with her.  However, everything changed this afternoon after her eye exam.  I had left the hospital for a few hours to get some things done and received a phone call from the NICU.  My heart always skips a beat when I see that number, but they informed me that she was okay but that they wanted my consent to transfer her to Baptist for laser eye surgery.  The vessels in her eyes are growing too quickly and need to be dealt with as soon as possible.  Tom and I gave our consent and rushed to the hospital in time to meet the transport team and say goodbye to our Forsyth NICU family.  They have assured us that we will be allowed to return once she has been cleared after the surgery, but we're still looking at a week or two being away from our "home."  I knew I would have mixed emotions the day that Noelle moved to NIC 2, so being transferred completely out of the hospital in which we have lived the past 9+ weeks was/is extremely disconcerting.  We had lots of hugs "goodbye" with promises that we would see everyone again soon, and we're praying that that will indeed be the case.

 ~Exhausted Sweet Baby Girl~

Noelle seemed to handle the transport fairly well, but by the time she was starting to get settled into her new place, I could tell she was getting very tired.  She had been awake for quite some time, and since she was being admitted into another hospital, she was constantly being touched, poked, and prodded.  She had to have yet another eye exam, and shortly after that is when she decided she had had enough.  She clamped down, quit breathing, and as Tom half jokingly put it tonight, "she proceeded to take another 10 years off our lives!!"  She has done this once before, but today the episode lasted longer, and they had to do some chest compressions and bag her for about 30-45 seconds.  They almost intubated her again, but thankfully she recovered and started breathing on her own.  The evening still has been up and down as she has had one "brady" (dropping of her rate) after another.  She is absolutely exhausted, and it is obvious that she knows she is not in familiar surroundings.  I never thought I would be wanting to hear the alarm sounds from our old NICU, but after the new monitor sounds all evening, I found myself just wanting to hear the normal alarms to which I am accustomed.  I know what every one of those sounds mean, but here, everything is different.

 

 ~Holding Mommy's Hand & Trying to Get Comfortable~

She finally seemed to settle down late tonight, and we are praying she gets some good rest and can adjust well to her new environment.  She will have to have another eye exam tomorrow, and from there surgery will be determined.  I know it is probably harder on us than it is her, but she is definitely aware on some level that these are not her regular nurses, and this is not her normal space.  It was incredibly hard to leave her tonight.  At "home," all of her nurses know her, her likes and dislikes, her history, her tendencies, and they really do love her and care for her incredibly well.  The nurses here are good as well, but the atmosphere here is completely different than what we had before.  Honestly, I dislike it all very very much, and God is teaching me patience and a new level of contentment like never before.

 ~Noelle's New Corner~

There are still blessings through this.  Her doctors are exactly the same, since all of her neonatologists at Forsyth are actually from Baptist.  It is also a huge blessing that she is here for something more "minor."  Twice, they have had her papers ready to transfer her when they thought she was developing NEC and another time during all the issues with her heart.  Thankfully, this issue is not as serious in many respects.  Still, it's scary and disconcerting, and we're praying that she can do well through this and be back "home" at Forsyth very soon.  We are now readjusting our schedules and plans again so that we can be available to her as much as possible through all of the transitions and procedures. We should learn more tomorrow about what is exactly happening with her eyes and what the ramifications are for her, and we will definitely continue to keep everyone posted.  Thank you so very much for praying for us.  I know that you have not stopped even through the good days, and that is an incredible encouragement to us as we hit the "rougher" days.  God continues to make Himself real to us and show us that He is in control, not us, and we know He will continue to see us through.

NICU Day 68 ~ (February 13th)

Two years ago today, Tom got down on one knee and asked me to be his wife.  It was a beautiful, wintry day with snowflakes and mountains included; and while life certainly was not carefree at the time, we were filled with excitement and anticipation for the future, completely oblivious to what God had in store for us.  The past several months have been incredibly trying, and yet we have been drawn closer to God and to each other through the process.  We are not the same people, and for that I am grateful.  Not that we are better or have become more spiritual, but God has used marriage and other circumstances to reveal sin that must be forsaken, and He continues to mold us and shape us as He now uses Noelle in our lives as well as the circumstances surrounding all of us.  Do I feel drawn closer to God?  Yes.  But I am also seeing even more how wicked my heart is and how much I still need Him to change me.  While circumstances like ours are not always easy, I am thankful that God always has a purpose and that we do not go through things because of a whim.  If there is one major lesson I have learned from this, it is that I cannot go through one minute without fully relying on Christ.  You would think we would have this down by now, but no.  He continues to remind us of this fact.  This whole process has been one of waiting...waiting for the next ultrasound, the next test result, the next possible answer, etc...  Amidst all of the waiting, we really have received no human answers for "why" all of this happened.  And so the doctors warn us that this could happen again with future pregnancies or it could have been a one time occurrence.  Even after all these months of learning to wait on God and to trust Him for each step of the way, I was initially upset and disappointed to hear that there was no human explanation.  You would think that I would have learned by now that regardless of what man says, God will still have His way in our lives, and He alone will determine our paths.  But I am still a sinner, and I humanly was hoping for something "concrete" on which to hold.  But God in His good grace did not give it to me.  He has determined that we must rely on Him for every step not only with Noelle but also with possible future children.  I should be doing this anyway, but in His graciousness, He has placed us in circumstances that make us do exactly that.  It has been a very full and busy two years, and sometimes I can remember our engagement day like yesterday, but I am also very grateful for where we are now and am glad to look back and see how God has worked in our lives to this day.  Noelle had another pretty "boring" day, and we love being able to see His sovereign hand continuing to hold and guide us, knowing that He will never leave us or fail us.  What a good God we serve.

NICU Day 67 ~ (February 12th)

 ~Noelle's Home Away from Home~

Noelle had an absolutely fantastic day today, and we praise God for the progress we continue to see in her.  The main thing they did today was to take the first step in condensing her feeds, which is the beginning process of getting her down to taking her feeds every 3 hours like a regular baby.  Then once she can take all of those feeds by bottle every 3 hours, she will have completed one of the major steps for being allowed to come home.  She has handled the first several hours of the condensing very well, so we are praying that this continues and that she can go to the next step soon.  She also is currently still taking a bottle once a day and is doing extremely well with that.  It seems like she is crossing milestones faster and faster these days which is encouraging after sometimes waiting weeks in the beginning for her to reach even one goal.  We cannot wait to report when she reaches another milestone!!  Thank you for rejoicing and praying with us.

P.S. Kari, she loves her "Aunt Kari Blanket" you made for her.  When we drape it across her isolette, it blocks out much of the light and noise and allows her to rest well.  It also is the talk of the NICU, and makes the other babies wish they had one too ;-).  Love you!!

NICU Day 66 ~ (February 11th)

Noelle had a fantastic, "boring" day today!!  She had a few minor episodes in which she dropped her heart rate, but she was usually able to recover on her own, so they did not even record them.  She really is beginning to act like her gestational age with more waking periods all the time, and we're thoroughly enjoying each passing day with her as we get to interact with her more and more.  The exciting milestone to report today is....(drumroll please!!)....she reached the 2 lb. weight mark!!!  We are thrilled that she is consistently growing and putting on weight...she is finally taking off, and it is a joy to watch her grow like this.  The next goal is to reach 1,000 grams, and she is only 90 grams away from doing that, so we may reach that even this week.  God continues to demonstrate His gracious goodness in our lives.  Thank you for praying!!

NICU Day 65 ~ (February 10th)

After a bit of a rough night last night, Noelle recovered well and had a pretty good day today.  Her acid reflux is still causing issues, but they were able to give her something to help clear out her intestines last night, and that seemed to help her for now.  She had a busy night with x-rays and lab work, but the results from both of those came back normal, so we're grateful that she seems to be feeling better today.  Many have wondered about her acid reflux and what might affect her, but after much discussion with the medical staff, it is not related to my diet.  The acid reflux is caused because she is so tiny, and her stomach just has difficulty handling all of that milk at one time.  She needs all that milk to grow, and yet the high amount causes the acid reflux, so "we can't win for losing" on this one.  Thankfully, she is continuing to grow and now weighs 870 grams / 1 lb. 14 oz.  We are getting so close to 2 lbs. and are excited to be reaching another milestone with her!!  Our time with her today was really special.  She is becoming so alert and responsive to us, and I thoroughly enjoyed watching her respond to Tom as he read to her this afternoon.  She completely turned her head toward his voice and just stared with eyes wide open.  It was incredibly sweet to watch such a tiny little person respond like that.  She definitely knows her daddy!!

~Listening to Daddy Read~

We also discovered today that "when the parents are away, the nurses will play!!"  Noelle has a little stuffed giraffe given to her by Kaci, one of our nurses' daughters, and it sits on her isolette.  We have commented before, that she is small enough to ride it, but last night our nurse decided to have some fun and play with Noelle and her giraffe.  The result was a CD of pictures for us entitled "Rodeo Noelle,"  and the pictures are just too cute not to share.  We love our nurses and are glad they have fun with our little girl while they are taking such good care of her.  

Thank you for continuing to pray for our sweet little girl, and we look forward to sharing more of these moments that God gives us with her.

NICU Day 64 ~ (February 9th)

 ~December 8, 2011~

Nine weeks ago today, Noelle was born into this world, and as I look back on the pictures from that day, tears fill my eyes.  Tears of hope and joy; tears of grief and sorrow.  The grief and sorrow pass quickly, but they were part of the process.  No mother wants their baby to be "kicked out" of the womb, but that is exactly what happened.  Instead of being a place for her to be nurtured and to grow, it had become a hostile environment which was very quickly taking her little life.  Whether it is something like that or a completely different situation, the final result ends up being the same for most preemie mothers, and whatever the circumstances that led them there, they now are living life with their baby in the NICU.  It's not an easy road.  Each medication, each tube, each blood draw, each probe (the list is endless) is another reminder that this baby should not yet be here.  They should still be safely growing inside, oblivious to this kind of a world in which they now live.  But that isn't the case, and so I think every preemie family goes through some sort of grieving process in working through this type of situation.  However, when you believe as we do, that God is completely sovereign in all things, it puts a completely different perspective on that grief.  Instead of torturing ourselves with "why" and "how" and "what did we do wrong" or "what should we have done differently," we can rest instead in the knowledge that God had Noelle's birth date and method planned before the dawn of time.  Knowing that He is the Sustainer of her life, whether she is in the womb or not, brings an incredible comfort to our hearts, and nothing we could have planned or done would have changed the events of nine weeks ago.

 ~February 9, 2012~

And so enters the hope and joy.  I think ours was magnified simply because we did not even expect to reach a day in which she had a chance at life.  We knew all things were possible with God, and yet we did our best to rest in His sovereign plan as He revealed it to us bit by bit.  With one small cry a moment after she was born, hope filled our hearts like never before, and we dared to dream what life might be like with our tiny miracle.  In many ways, that day seems like yesterday, and in other ways the last nine weeks feel like an eternity.  Sometimes I cannot seem to remember what "normal" life is like, but that does not sadden me.  I am so incredibly grateful for this ever changing new "normal" and am very excited for the continuing changes that are to come.  Our little girl is doing so much better than anyone ever thought or imagined would be possible.  Yes, there is still a lot to overcome, but God continues to show Himself faithful, and we stand in awe of Him as we watch this miracle unfold before our eyes.  Thank you for being a part of that with us and continually bringing us before His throne.

NICU Day 63 ~ (February 8th)

Noelle turned 2 months old today, and I can hardly believe it!!  Overall, she is still doing really well with the main issue right now still being her acid reflux, and it seems that is just going to take some time.  Hopefully she can outgrow it before they have to resort to medications or (worse case scenario) surgery.  She had several episodes today where she dropped her heart rate due to the reflux; but for the most part, she just rested today, and we each got to spend some time holding her.  I think one of my favorite sights is watching her and Tom doing Kanga Care (skin to skin contact) together.  She just snuggles right up with him, and it's a sweet image to see her tiny little body nestled into his.  So, while the dropping of her heart rate made my heart rate increase a few times today, overall it was a pretty "boring" day, and we are thankful for that.  We still appreciate your continued prayers and hope to report another good day tomorrow!!

NICU Day 62 ~ (February 7th)

Noelle had a fantastic day today, and we are finally starting to feel like we're really settling into some kind of routine.  It still is not the same every day, but it is getting less stressful, so it feels like we are at least getting the hang of this (well, sort of anyway).  It definitely helps that she is doing so well right now and also that we are able to interact with her so much more.  We were able to spend a lot of time with her today, and while she was sleepy for most of that, she did wake up for her bath and spent quite a bit of time interacting with us for a while.  Watching her tiny eyes follow our voices or having her reach up with both her hands and hold tightly to our fingers brings such joy to our hearts, and we do not take for granted the fact that we are able to do these things with her.  She weighed in at 1 lb. 13 oz. tonight which means that she has gained one pound since she was born almost 9 weeks ago!!  She also did really well with her oxygen levels today and did not have as many episodes as the last few days, so we're hoping that means the acid reflux is improving.  We are so thankful to God for our tiny bundle of joy and thank Him for His goodness to us.

(And yes (for my friends that I know will ask :-)...her onesie says "Daddy's Princess" on it.  She gets to be a princess while in the hospital only.  We do not want to raise a spoiled little diva!!  But Daddy still enjoyed dressing her in this tonight.   She definitely already has him wound around every tiny finger!!)

NICU Days 59-61 ~ (February 4th-6th)

Noelle continues to do very well, everything considered.  It is really getting fun as we spend time with her, and she has more wakeful periods of time in which she can interact with us.  It is also a huge blessing to be able to hold her so much.  She currently weighs 800 grams / 1 lb. 12 oz. and seems to be on a good trend of gaining weight and growing.  They have had to increase her oxygen flow in the last couple of days to help with the acid reflux, so hopefully that will help her recover from that more quickly and be able to start weaning down on her oxygen again.  She also received a blood transfusion over the weekend as her hemoglobin was low, and hopefully the added blood will help her digestion and consequently help the acid reflux as well.  She seemed to do better this afternoon with the reflux, so we're hoping that is a good sign of progress that will continue.  She will start receiving physical therapy soon.  Term babies "float" in fluid until they are born, relieving pressure from their limbs.  However, preemies are lying in a bed, and although they are switched in positions every few hours, they still often develop issues with their limbs.  The issue should hopefully resolve with physical therapy which we will need to continue daily with her even once she is home.  It's a little overwhelming some days as we start to grasp everything that is involved with bringing home a preemie baby, and yet when we think of how far God has brought us, we cannot help but continue to trust that He will sustain us and see us through all the issues she still needs to overcome.  He has been so incredibly gracious to us thus far, and we are thankful once again that He is sovereign over all things.  Thank you for continuing to pray for our family!!

NICU Day 58 ~ (February 3rd)

Noelle had a great day today overall, and she has maintained her weight the last two days (no gain or loss).  She is still experiencing the acid reflux, but they were still able to wean her oxygen flow again today and she handled it well.  She is doing so well that the nurses are already starting to estimate how much longer she will be in NIC 1.  There are two sides to our NICU.  NIC 1 has the more critical babies (where we have been the past 8 weeks), and NIC 2 is babies that are stable and much closer to going home.  The "graduation" to NIC 2 is significant to parents because of everything it represents, and it is exciting and a little scary all at the same time to think that that day is quickly approaching.  All of the nurses rotate both sides, but some nurses can work weeks on one side before working the other side again.  I must admit, that I am a little (okay, VERY MUCH) attached to our little space that we occupy in NIC 1 and the nurses that we have on a consistent basis.  Some weeks, the care changes daily, and other weeks you will get the same nurse for days in a row or nights in a row.  I like that part.  I enjoy getting to know and build relationships with nurses that are consistently taking care of her.  However, that said, we have never had a bad experience with even one of the nurses in the NICU.  We definitely are much closer to certain ones and have gotten to know them really well, but even the ones that we don't know as well have been really good with her.  We have no complaints.  And so, when the time comes to say "good bye" to our little space in NIC 1, it will be exciting and bittersweet all at the same time.  Even I think that is a little strange to say, but when your life is lived in the NICU, nothing is quite "normal."  I know that we will meet more new nurses on the other side and develop relationships with them too, and I hope that some of the nurses we have now will rotate into NIC 2 more often once we are there.  Words just cannot express the thankfulness in our hearts for these precious people ~ people who do not view this as their "job."  It is their passion; and when they care for your baby, it is from their heart.  I could never say enough about them or to them in thankfulness for their service to our family.  And so, we start mentally preparing for the day that we show up to the NICU, and the front desk informs us that we have "graduated."  It will be a giant step closer to coming home.

NICU Day 57 ~ (February 2nd)

Noelle turned 8 weeks old at 11:27AM today, and it was a little ironic that we had "flashbacks" in the NICU today.  Her little "neighbors" have all switched over in the past few days...one even this afternoon.  It was amazing to witness the preparation and the process for another little one entering the NICU and be reminded of what would have been happening the morning that Noelle was born.  The team was prepped and prepared and was fully aware of what was happening upstairs, long before the baby was born and actually made it into the NICU.  The care and dedication is so evident, and we were thankful yet again for all the people that have cared for Noelle not only on the day she was born but through the past 8 weeks.  We have made true friends that we will have for life, and we are ever grateful for these new relationships and especially for how they have impacted our daughter.  We also were reminded of the "old days."  How quickly we forget things that we were still experiencing only a few short weeks ago...things like heel pricks and blood gases, PICC lines and heplocks, blood transfusions and antibiotics, PIP and PEEP (on the ventilator settings), and the list goes on and on.  Our tiny miracle now weighs 1 lb. 11 oz., is starting to take her feeds from a bottle, and is breathing on her own with some oxygen support.  Do we still have a long road to walk?  Yes.  Are we going home any time soon? No.  But by God's grace, we have come incredibly far, and we were reminded of that today.  Do the prayer requests continue?  Yes.  But for today, we are just going to say, "Thank you, Lord, and we praise You for what You have done and for what You will continue to do."

***As a reminder: if you are interested, Noelle's story is airing on our local FOX 8 news channel tonight at 10:00PM in the Bob Buckley's report.  If you are not local or do not have a television, you can watch it livestream online here: http://www.myfox8.com/news/livestreaming/ .

NICU Day 56 ~ (February 1st)

Overall, Noelle had a really good day.  The main prayer request is for her acid reflux.  She is experiencing it quite a bit, and it often causes her to hold her breath and drop her heart rate creating "episodes."  It is very common with preemies, and the main thing that helps it is growth.  So, we are praying for both the acid reflux to subside and her growth to continue upward.  She is doing very well otherwise, for which we are very thankful.  I hope we can report improvement tomorrow!!  Thank you for praying!!

NICU Day 55 (January 31st)

Noelle had another really good day, and we are so excited to be able to report that she is growing and visibly starting to look like a different baby!!  She currently weighs 1 lb. 10 oz. and is consistently starting to put on weight.  She had another eye exam which showed that her eyes were still premature/immature but no other issues were present, which is another huge praise.  Tom was able to spend a couple of hours holding her, feeding her a bottle, and playing with her tonight, which he thoroughly enjoyed.  The tiny goofball was doing little pullups!!  She would grab his finger with both hands and pull herself up towards it, and she repeated this several times in a row.  He also has a game with her where he will push against one of her hands, and then she will push back against him.  It is sweet to watch them "play" and exciting to see her so responsive.  I stayed home again today as I came down with a case of pink eye and had to get eye drops from the doctor.  I am no longer contagious after 24 hours so we're thankful for that, but in the meantime, everything is getting washed and scrubbed down since we have no idea where I picked it up.  Thank you so much for continuing to pray for our little family.  It is easy to focus on "small" things that can be scary and worry about all the sickness being passed around, but then God reminds us that He is still the One in control, and ultimately it is He who is protecting Noelle, not us.   We are so thankful we can rest in a powerful, sovereign God who loves our little girl more than we ever possibly could.

***As it turns out, I simply have allergies and am not contagious~huge praise!!~

NICU Day 54 (January 30th)

Tonight's post will be short and sweet as Noelle had another really good, "boring" day.  She gained another 20 grams, putting her at approximately 1 lb. 9 oz.  That is a huge praise, and we are hoping this weight gain trend continues!!  Her oxygen was slightly weaned again today, and she has tolerated it really well so far.  We were able to spend some special time with her today as she was really alert for a period of time and even took a good portion of her bottle today.  Thank you so much for praying for her continued health and growth!!

NICU Day 53 (January 29th)

Noelle had another really good, quiet day overall.  She gained 30 grams putting her at 700 grams total (or 1 lb. 8.7 oz.).  She is only 12 grams away from doubling her birth weight so we are hoping she reaches that and then passes it by very soon.  They do believe that she is probably experiencing quite a bit of acid reflux due to her small size.  She has been having quite a bit of desatting lately but she always brings herself right back up.  It is typical with acid reflux, so we are hoping that it gets better as she continues to grow.  Some days, she seems to sleep so deeply that it does not bother her too much, and other days it really seems to make her uncomfortable.  Today was a deep sleeping day so hopefully that means continued growth spurts.  We did not hold her today--she was on the cold side with her body temperature so we kept her in her isolette and piled on the warm blankets.  Other than those things, it was a pretty uneventful day. 

On the subject of Noelle but a slightly different note, there is a story airing on FOX 8 News (our local news station), this Thursday evening at 10:00p.m.  A lot of people have been asking about it so I will explain some of the background.  This story actually began back in October when we thought we were facing a fatal condition with Noelle.  We had contacted the NILMDTS organization ("Now I Lay Me Down to Sleep") which does volunteer photography for parents who have lost or will lose their baby.  It took us quite some time to reach the point where we would consider photographs if Noelle was stillborn, but in the end, we thought it would be the only thing we would have left to document the short time we would have with her and the only thing we might have to share with future children.  So we contacted the NILMDTS photographer for our area and were introduced to Tammy.  She met with us and learned our situation and offered to do a maternity session for us (which pictures many of you have now seen) and then to be there when Noelle was born to take photographs for us as well.  She also told us that FOX 8 had contacted her hoping to do a story on NILMDTS and to follow a couple going through the process.  The decision was up to us, and we told her we would pray about it.  Our initial reaction was "no way!!"  Things were difficult enough without cameras being in our face, but as we talked through things together and prayed about it, we had a change of heart.  It was yet another opportunity to document our journey with Noelle for our future children to see (keep in mind that at this point, we are preparing for Noelle's stillbirth) as well as to possibly be a testimony to the community.  We agreed to meet with Bob Buckley and then make our decision.  After meeting with him and Eric, his photographer, we agreed to move forward with them, understanding that we could back out at any time and after making it clear that our faith in God was preeminent in our lives, and we did not want that fact hidden from the story.  So they have been following us for quite some time and were there at the ultrasound when we first heard positive news and thought things might be changing with Noelle's outcome.  They still chose to follow the story even though the circumstances changed and the first part is now airing this week.  If you do not have a TV or if you are not local, FOX 8 has a livestream on their website, so you can watch it here (http://www.myfox8.com/news/livestreaming/) at 10:00p.m. eastern standard time on Thursday, February 2nd.  It will be shared by Bob Buckley in the "Buckley Report" sometime within the newscast.  We are constantly amazed at the relationships that continue to develop out of Noelle's situation, and we're praying that God just continues to use as as vessels for His glory.  Thank you for continuing to pray with us to that end!!

NICU Day 52 (January 28th)

Normally you would think that people would get tired of hearing the same report day after day, but in this case it is not so.  Another "boring" day is absolutely the best news to both share and hear when your life is lived in the NICU.  Noelle had another sleeping/growing day, and we just enjoyed spending time with her.  Our main prayer requests for her are as follows:

~Her growth.  She lost the 10 grams she gained yesterday, and it's a constant back and forth.  This is normal, and it's encouraging that overall she is still moving forward, but it is very slow going and we're praying that she starts hitting larger growth spurts soon.

~Her oxygen weaning.  They were able to wean her oxygen pressure slightly last night, and she has tolerated it very well.  We are praying she continues to follow this path and do well so they can keep weaning her until she is on room air very soon.  It's great that she's on the cannula, and yet we're already looking forward to the day when she can get rid of it...mainly because it makes her tiny nose sore!!

~Her body temperature.  One of the "tests" she has to pass before coming home is being able to maintain her body temperature in an open crib.  Currently, we can only have her out of her isolette for a short period of time before her temperature starts dropping so we're praying that her body can start regulating itself soon and adjusting its own temperature.

~Her feeds.  She is doing extremely well right now taking a bottle once a day, but the rest of her feeding is on a continuous drip.  Eventually they will "condense" her and start feeding her over shorter periods of time until she is eating every 3 hours.  They will continue to do this through a feeding tube and slowly start adding an additional bottle feeding each day until she can take all of her feeds by bottle (another requirement before she is able to go home).  This can take time as preemies stomachs have to adjust to the food hitting their stomach over shorter periods of time and taking the bottle can get tiring for them.  Our prayer is that she will tolerate these upcoming changes just as well as she has the one bottle feeding a day.

~Her continued health.  She currently is doing very well, and we're especially grateful that the weather has been so mild and thus limited the flu season here so far.  Our prayer is that this will continue, and that she will not be exposed/catch any virus going around but will be able to keep growing and doing well with "boring" days through the rest of her time in the NICU.

Overall, we are very encouraged.  For the very first time, the medical staff is telling us that we can "breathe easy" and that they believe she is past the most difficult and crucial time period.  She is doing remarkably well for her size, and so they continue to treat her according to her gestational age and not her weight.  She would have been 36 weeks yesterday, and she is on track with that in many ways except for her weight.  At this point, we are not anticipating bringing her home before March, and I am mentally preparing myself for April or later just so I do not get my hopes up too soon.  Thank you so much for constantly keeping our family before the throne of God.  You are an incredible encouragement to us, and we cannot thank you enough.

NICU Day 51 (January 27th)

Today was another really "boring" day in the NICU.  Noelle gained 10 grams, putting her at 1 lb. 8 oz so we are closing in on doubling her birth weight again.  She took her bottle like a champ today, but she mainly just rested and grew.  Her pituitary gland study was determined to be just fine, so we are thankful for that.  They are actually decreasing her thyroid medicine a little bit, so we are hoping it is a sign that perhaps she can eventually keep adjusting her body and grow out of the issue.  She may not, but we are hoping she does.  Other than that, it was a pretty uneventful day...the very best kind!!  As always, thank you for praying!!

NICU Day 50 (January 26th)

~Aunt Donna Holding Tiny Noelle~

Day 50 in the NICU!!  Wow!!  So many milestones have been reached.  First, we had to get through the first 24 hours and then the first 48.  After that, it was 2 weeks, then a month...now we are at day 50 and closing in on 2 months.  So much has happened during that time period and through it all, God has drawn us closer to Himself and made Himself even more real to us and taught us so much through this process, and we know it has only just begun.  Noelle was really sleepy today.  Normally, she will wake up every four hours with her diaper change, but today she would just kind of peek one eye and then go right back to sleep.  She was not lethargic...just sleeping deeply.  It is great to see because it means that she is growing and not burning calories moving around and being awake.  She was alert for a short time tonight but we got her put right back to sleep before we came home.  She gained 40 grams yesterday and weighed in at approximately 1 lb. 7 oz. so if she can keep on that path of growth and weight gain, we will be doing really well.  They are currently running some panels on her pituitary gland since she has had issues with her thyroid and blood pressure at the same time.  Hopefully the answers from that will give them direction on how to adjust her medication (if needed) and help her continue to grow.  She is doing well on her cannula, but she has not been able to wean down on that as of yet so we are praying that she can start doing that soon as well and get down to room air and breathe completely on her own.  We are so thankful to be reporting another good day with our little girl.  Thank you, Lord!!!

NICU Day 49 (January 25th)

~Learning to Take a Bottle...One Drop At A Time~

Noelle had another really good day in the NICU.  In fact, today's morning rounds with the medical staff were the shortest she has ever had in the past 6+ weeks!!  The summary: she needs to grow.  So that is it...just like a term baby, she now needs to eat, sleep, and grow.  Love that!!  Of course she has some other things they are monitoring, but those pale in comparison right now.  We're beginning to feel like real parents as we get to be more and more involved in her care and hold her a little more often, and it is really starting to sink in that we actually need to start preparing for her to come home!!  We are still weeks away, but we had not gotten anything ready at home since originally they told us her condition was fatal and that diagnosis began to change only a few weeks before she was born, and then since then...well...life has been turned upside down!  It is fun to start dreaming and planning for that time in our lives....it is a relatively short time away!!   Thank you so much for praying for our little family.  We are overwhelmed with God's grace and goodness in our lives and so appreciate your part in praying for that as well.