NICU Day 121 ~ (April 18th)

~Can you see what is missing?!!!~

Noelle made huge strides today and even set some new milestones in her little life.  She did so well through yesterday and last night that they decided to remove the replogle tube and allow her to begin eating again, which she thoroughly enjoyed.  Of course she does not understand why she has not been allowed to eat, and so she holds the bottle in her mouth as if you will never ever feed her again!!  The term in the NICU for not being allowed to eat is "N-P-O" {which is an abbreviation for a latin term}, and so the standing joke is that she will probably always greatly dislike those letters for some "odd" reason. She has lost some weight, which is typical of going through surgery and not eating for a few days; but she is already eating like a champ and should be back up to that 4 lb. mark in no time.  The surgeon was also able to perform her {quite painless} biopsy for Hirschsprung disease so we should have some results back in a couple of weeks.   However, the best part of today and the biggest answer to prayer is that Noelle has come off her oxygen support entirely and is breathing room air!!  Overnight they had been able to wean her down to the levels on which she had been while at home {which was an extremely low flow}; so today they decided to do a trial run on room air and see how she did.  We began the trial at 11:30a.m., and she is still going strong and doing extremely well.  Her cannula came out a few hours after that, so she is one happy girl with nearly everything gone from her face; and we are thoroughly enjoying looking at her tiny face with nothing sticking to it!!  She still has an IV heplock in her head which they will remove once they are certain she is tolerating her feeds well and no longer in need of any fluids, which should be within the next 24 hours.  Tomorrow will be the day we find out if she is coming home in the afternoon or if they are keeping her one more night for observation.  Either decision is fine with us at this point, but we are getting very excited to have her home with us again.  We have missed having her here {well, the few hours we are here each night anyway!} and are looking forward to settling into what we hope will be a semi-normal lifestyle for a while.  Thank you so much for continuing to pray for her.  I really do not think we would be where we are today without the prayers of so many faithful believers.  God has been amazing in how He has moved so many to lift our precious little girl up in prayer to Him, and we are ever grateful for how He has used such a vast multitude of people in the life of our little family.  Thank you for sharing in our extreme joy tonight, and we very soon look forward to reporting another sweet home coming day.

NICU Day 120 ~ (April 17th)

~Enjoying time with Daddy~

Today was a fairly uneventful and boring day as NICU days go, and we are grateful for it.  Noelle has not progressed quite as fast as we thought she would; but she is doing well and making good strides, and we would rather she take them more slowly and do well rather than rush the healing process and consequently have a setback at a later time.  She still was not allowed to eat today; however, by the end of the evening, her bowel sounds were returning which means that things are "waking up" and beginning to work again.  Hopefully this means that we can start feeding her again tomorrow, and we're praying that she tolerates her feeds well.  Since she is currently in the NICU, the surgeon has decided to go ahead and proceed with the Hirschsprung biopsy and put that behind us.  He would have performed it during the surgery she had Saturday night; but pathology does not work on the weekends, and they have to perform some immediate tests on the sample.  Lord willing, in a few weeks we will have an answer to some of our questions.  We were told today that this biopsy is not 100% conclusive and could be repeated again at a later time if issues continue to arise, but we will simply keep taking the information as we receive it and handle it accordingly under the current circumstances. Noelle also weaned well on her oxygen today and my hopes are up that she will be able to come off of it completely before coming home.  If not, then we are happy to keep her on it as long as is necessary, but it would be wonderful for her to come home oxygen free {at least when she is awake!  Some babies need it for a period of time only for sleeping}.  I had the opportunity to hold her for a couple of hours which was a sweet relief after empty arms for the past few days!!  Thank you so much for praying specifically for Noelle and her healing as she seems to be doing well with the pain overall unless moved around too much.  We thank God for another good day and look forward to reporting more progress tomorrow.

Noelle's Evening with Daddy

Noelle absolutely loves her daddy and cranes her head towards his voice whenever she hears him talking to her.  He had some time this evening to devote just to her, and she thoroughly enjoyed their activities together.  The pictures say it all!!

~Daddy reading her a story~

~Looking at the pictures~

~Soaking up the snuggles~

~Catching a cat nap~

She currently weighs 3 lbs. 15 oz. and is in and out of doctor appointments right now for various observations and procedures.  They have postponed the biopsy for another month but now believe that it is probably unlikely that she has Hirschprungs disease.  It is definitely still a possibility, but it is encouraging that she is currently doing very well in that regard.  We also had encouraging news this week regarding her hypothyroidism and now understand that this may be a transient issue which she could outgrow.  If not, she will be treated with medication for the rest of her life, but we are thankful for the hope that this may pass and are grateful as well that it is a controllable issue, regardless of the final outcome.  Thank you for your continued prayers as we continue to wait and trust God for more answers regarding Noelle's health.  He has certainly brought us this far, and we know He will never fail us.  What a comfort in which to rest!!

NICU Day 112 ~ (March 28th)

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

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

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

~Trial Run in the Crib~

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

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

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

~Snuggled in for the Night~

NICU Day 102 ~ ( March 18th)

~Getting Warm after Bath Time~

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

~Sleepy, Snuggly Girl~

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

NICU Day 91 ~ (March 7th)

Today was yet another pretty good day overall for Noelle.  She did have another episode with her tummy last night in which her intestines were dilated full of air.  They had to insert a tube down her throat again and draw some of it out; but thankfully, they did not stop her feeds.  We will not know until she grows more, but it is looking more and more like she will have at least a short visit (if not a longer one) at Baptist before she is able to go home.  While there are some other issues that will be dealt with later in her first couple years of life, intestinal issues are not something they want unsolved before she is home with us.  We are still praying that God will work yet another miracle and solve this without surgery; but we also know that if she needs any sort of procedure that Baptist is the best place to be in such a case.  In the meantime, Noelle seems to have regulated out her amounts and is not taking quite so much food as she was the last two days; but she is still eating more than her minimum requirement, so that is great for her growth.  She now weighs 1,020 grams!!  The 1,000 gram mark is quite the milestone in the NICU, and we are very excited for her to reach it, wave goodbye, and keep on going!!  Translated into pounds, this means she weighs 2 lbs. 4 oz., and she is not so very far from tripling her birth weight.

It's difficult to see in this picture, but if you look closely, you can see that Noelle is sitting up inside her isolette.  One of our nurses was kind of enough to take this picture with her phone as I forgot our camera at home today.  I will get a lot more pictures tomorrow of the entire thing, but I'm thankful to have this picture of her first time in her doll seat.  Because she is getting older, she often has wakeful periods in which she likes to interact more and not just lie down in her bed.   However, we cannot keep her out of her isolette for long periods of time because she gets too cold; so the nurses have looked for and tried several different options of bouncy seats which they have in the NICU but all of them were too large to fit inside her isolette.  Tom and I had the thought the other day to check the doll section at the store and came across a little doll high chair that also converted into a swing and a bassinet.  The full thing was still too large to fit, but one of her other nurses figured out to pop the seat portion off (which is soft and adjustable in and of itself) and just use that inside her isolette.  So Noelle had personal playtime today!  She really enjoyed sitting up and looking around at the pictures we taped inside for her to see while listening to stories on her recorder.  It is such a joy to see her "growing up" and doing normal baby things, even while she is still so tiny.  We cannot thank you enough for your continued prayers and look forward to posting more pictures tomorrow!!

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!!~