Drum Roll, Please....

Since returning from Thanksgiving, it has been so enjoyable to feel as if we are truly settling into this lock down period.  No appointments were scheduled for several days in a row; and while our lives seemed no less busy, it was nice to keep our little girl at home and attempt to create a consistent standard of normal around here.  Well, it was fun to try anyway!  Noelle, as social as she is, seems to enjoy being in "her space" and not being dragged out of the house multiple times a week, and I am glad to see that her personality does not seem to be hindered in any way as we keep her from people during this sick season.  Thankfully, her appointments have begun to space further apart as she continues to improve in various different areas of health and does not need to be seen as often, but because so many specialists follow her, it is impossible to avoid them altogether through this entire lock down period.  Since her early NICU days, we were cautioned that she would most likely need different forms of therapy upon discharge.  Premature babies often struggle with gross and fine motor skills, speech, and various other types of developmental milestones since they entered the world in such a traumatic way and spent so much time in an unnatural environment as their bodies matured outside the womb to a stable status.  We have been blessed that Noelle has not struggled in several areas that we expected, but she was not able to bypass them all; so when we were told it was time for her to begin physical therapy, I was not surprised.  She had an initial appointment at a rehab center {which put my heart in my throat from all the people and germs present!}; but after that first evaluation, we were told she qualified to have in-home therapy sessions, which we began nearly two weeks ago.  I must admit that I was overwhelmed at the end of the first session in our home, but it was from an encouraging standpoint.  For while there were many things wrong, I was being given the tools to help Noelle and hopefully fix the problems without seeking extreme intervention.  Already, I have been very excited to see improvement in several areas, just in a matter of days.  Things that she has been trying to do for weeks, such as sitting on her own, are all of a sudden beginning to become reality.  It has taken a change in the way we act and think {for example, we now must hold her in a different way than what is "normal" or comfortable, and she must wear specially formed inserts in her shoes}, but these little actions add up through the day and result in progress gained, which is very encouraging to see.  It means that we should be able to avoid things like custom made shoes for her currently turned out feet or braces to help her walk.  We have been more than willing to consider any of these things, but we are also grateful to be learning how to help Noelle reach new milestones without taking extreme measures. 

However, at one of her appointments this past Monday, we discovered that there is one "therapy" we will not be avoiding; and that would be...{drum roll, please}...

~Getting Fitted for New Glasses~

... a set of tiny glasses. 

Although she is doing quite well and compensating for her inability {considering her ROP issues and previous surgery,},Noelle still seems to be nearsighted and allows one eye to move out of sync with the other when she is tired or distracted.  It is nothing serious {especially since we were originally facing the possibility of her going blind}, but we do want to act on it as soon as possible since her eyesight affects areas of her brain development as she is learning images and attaching recognition to them in the state which she currently sees them.  We would prefer that she accurately be able to view things and thus send the correct identification messages to her brain.  On the advice of our opthamologist, we are selecting frames that are practical and comfortable for her little face and will save the adorable frames for a later time {although this mommy is still exploring possibilities of making these just a little cuter).  Her glasses will look a little differently than what you see in the photo since these are simply for fitting purposes; but in another four to six weeks, tiny spectacles will begin to adorn this sweet face during all waking moments.  I think that she just might like them...

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 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 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!!

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 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!!~