PICU Day 10 ~ {July 4, 2012}

~Nearing the end of the extubation process~

We missed the fireworks tonight, but Noelle provided her own little 4th of July celebration that was enough for us.  It was not without some drama, but she was extubated today and is doing quite well, considering the overall circumstances.  At this time last night, we thought the extubation might happen some time today; but this morning the medical team informed us that they would prefer to do a long, slow wean and have her come off the ventilator sometime Thursday or Friday.  This did not bother us since this is the fourth time we have been through this process, and we always want to be sure that she is fully awake and ready to have that support removed.  However, she began to wake up this afternoon and really start fighting the ventilator, and they decided it was the time for extubation to take place.  At first, things seemed to be going normally; but we quickly saw that Noelle was not responding as she should once the breathing tube was removed.  This is not a completely abnormal response, so they gave her some extra oxygen and watched for her to recover and start breathing on her own, but this still did not happen.  Several things were happening all at once, but they bagged her to provide manual breaths along with oxygen and kept working with her.  She would take a breath when stimulated but then had difficulty moving the air in her system, so she would then stop and clamp down.  It was nerve racking to watch her little body struggling to adjust while hearing the monitor sounding because of a drop in her heart rate and oxygen levels.  The team continued to manually help her and work with her and also decided to administer a drug to reverse the effects of the pain/sedation medication {Fentanyl} and allow her to awake; and thankfully, the tiny amount they gave her worked almost immediately.  The doctor had told her this was her last chance before they reinserted the breathing tub; but she opened her eyes, began to cry, and started breathing and moving air on her own, allowing us all to breathe a sigh of relief.  The entire process took more than 30 minutes and was the most difficult extubation we have ever experienced with her. 

~Exhausted but ventilator free Baby Girl~

Perhaps it was her way of celebrating the 4th and making up for the fact that she cannot watch fireworks tonight or wear her sweet little 4th of July outfit that Mommy has been saving for her for weeks!  Either way, we are grateful that she is now doing well without the ventilator and having very few desaturation episodes thus far.  She does still have the blood clot issue in her leg, but it appears to be better than last night and slowly responding to the medication, so we are hopeful that it will be resolved within the next day and her circulation back to normal.  We hope you had a wonderful 4th of July holiday and appreciate your continued concern and prayers for us.

PICU Day 9 ~ (July 3, 2012)

What a day!!  It all started in the wee hours of the morning as Noelle's peripheral IV came out and a new one had to be inserted.  The process took some time since she is a difficult stick, but they were able to obtain it in one try this time with a location on her head.  I have mixed emotions about the head IVs since I hate the location; but they usually last longer than the feet or hands, and she cannot rub it, pull it, kick it, swat it {you get the picture....she has lost more than one IV in these manners}.  I was happy she was stuck only once; but that was short lived when a few hours later, they discovered her head was bleeding out from the IV site.  Then began the long and tedious attempt for another IV insertion.  We have been through this process multiple times this week beginning in the ER on day one, when it took seven attempts to place the first IV.  Peripheral IVs last only so long and when they do not flush or they simply come out, another one must be placed; and because Noelle is such a difficult stick {due to so many IVs in the past as well as her small size}, this can mean multiple sticks before success is reached.  Counting the IV attempts, blood draws, heel sticks, and  toe sticks, I calculated that she has been stuck more than 50 times this past week; and by today, I decided that something better must be done and made my wishes clear to the medical staff {as graciously as possible, but with urgency and concerned, watery eyes}.  I know it is a necessary evil which we have endured probably a few hundred times through the last seven months {and that is not an exaggeration}, but she can only tolerate so much; and since our request for a PICC line was refused a few days ago, I found it ironic that it was brought up by the staff today as a solution to the problem of constantly sticking her.  {I will say that we have been very happy with her overall care this time around; but an extremely high standard was set at FMC, and our expectations are thus very high as well}.  One thing quickly led to another at this point, and when they informed me of some medication changes while rounding on Noelle a short while later, I started questioning the direction of her care plan.  Thankfully, the cardiologist was nearby, and they quickly called him over to explain their current decisions.  I believe a misunderstanding had taken place since we had never intended to halt the original care plan while seeking a second opinion from Boston, but that was the impression given.  So after a short discussion, we were told that Noelle's original procedure spot for today had opened up again, and we could proceed with the heart catheterization according to our original schedule, if we so desired.  We had hoped to hear from Boston just for confirmation, but Tom and I discussed it and felt strongly that we should not delay any further but proceed for the sake of Noelle's health and the need for a confirmed care plan.  Things again progressed quickly from this point and after enjoying some sweet smiles and snuggles with Noelle, the cardiologist arrived to discuss the procedure and sign the paperwork.  Just as he was arriving, the specialist from Boston called and confirmed that he felt the care plan was what they would do themselves and that the heart catheterization was the next move they would also take, but he did not see anything pressing that made him feel a transfer was necessary for them to do at this time.  We were especially thankful to God for this affirmation of our decision and proceeded with the cardiologist through the next steps.  It is daunting to listen to and discuss the process of such a procedure along with the possible risks and side effects, and it makes us even more thankful that Noelle ultimately never rests in the hands of her current medical team but in our great God who loves her even more than we do.  Not long afterwards, she was being wheeled away; and I was very grateful for some dear friends from our church who came to sit and visit with us as we waited.  They dropped everything they were doing and rushed to the hospital to be with us during a time that would otherwise have seemed to drag on continuously.  The procedure took some time, and they experienced some issues with her ventilation process that they did not expect and actually had not seen in other patients; but she still did well overall, and everyone was ultimately very pleased with the final results.  They were able to obtain a baseline measurement of the pulmonary pressures and are happy to say that she is no longer the severe case that she was upon arrival last week, but she is now a moderate case {although they still consider this very serious in the realm of pulmonary hypertension, it does display good improvement, for which we are grateful}.  The best news of all was that though her heart anatomy was a-typical and not what they normally see, everything still originates in the right locations and is directed correctly {although it does not take the expected path~surprise, surprise!!} and is within normal range and obviously normal for Noelle.  This came as a huge relief after the multiple issues through this past week.

~Puffy from the procedure but very alert and wondering "Why do these people keep sticking all these tubes down my throat and nose?!!"~

Noelle finally arrived back in the PICU and though she slept deeply for some time, she has already started waking up and showing some signs of a very alert state.  Based on what we have seen so far, there is a strong possibility she will come off the ventilator tomorrow, and we can begin the rest of the therapy needed to start managing her pulmonary hypertension and hopefully avoid another serious setback such as this one.  One other main concern tonight is that they believe she has developed a blood clot in one leg, have started treatment necessary to manage it, and are closely monitoring it at this point.  We are pretty tired after such a long week and an especially long day, but we are also incredibly grateful to God for the answers that He provided today through this procedure.  While we are just beginning to understand the seriousness of her pulmonary hypertension and the long road it will be, things could have been much much worse; and God graciously spared us during this time.  My little joy tonight?  They were able place a central line while she was under anesthesia this afternoon, and so peripheral IVs and blood sticks are unnecessary for a few days until they place a longer lasting PICC line (I wish we could steal you for that, Keri Prybolo!! {Keri was one of our nurse practitioners at FMC, and she placed Noelle's very first PICC line with one try when she was still less than 15oz.!!}).  No one will estimate how much longer they think we will be in the hospital, but all evidence shared indicates that it will still take some time.  Regardless, we just rejoice in the huge blessings God gave us today and thank and praise Him for all He has done.  Your participation through encouragement and prayers means so much and continues to point back to the great God we serve.

NICU Day 119 ~ (April 16th)

~Noelle after waking up tonight~

Today was a long day but it ended well, and we are beginning to see the light at the end of the tunnel in this bump in the road.  We walked into rounds this morning with who else but Dr. Tatum, and we were incredibly comforted and relieved to have him looking after Noelle today as he knows her so incredibly well.  The day started off slow with little change from yesterday.  Noelle rested very well and would open her eyes from time to time to acknowledge our presence but still seemed quite out of it and not really herself.  They continued to wean her ventilator settings but it was looking as if it would be tomorrow before anything major would happen as far as extubation.  However, around 8:00 this evening, she fully awakened to an alert state and made it clear that she was ready for that tube to come out!

~Getting ready to extubate~

She was breathing extremely well over the ventilator and was making a concerted effort get the tube out herself.  After running a breathing test, they determined that she was indeed ready and the tube came out, and she was put back onto the nasal cannula with oxygen flow.

~It's out!!~

 She still has a replogle tube down her throat to draw any air off her stomach while it is still recovering from the surgery, but we're thankful to have the breathing tube out and see her getting back to her normal self.

~Happy Girl!!~

She was alert and awake for quite some time, and her nurse gave us a mobile which Tom set up for her to watch and listen to while we are gone tonight.

~Watching and listening to her new mobile~

Thank you so much for your continued prayers for our sweet little girl.  Our prayer now is for her stomach to "wake up" from the anesthesia and things to start moving through so we can begin feeding her again.  It looks as if Thursday will probably be the earliest day which we come home, but we'll continue to take it one day at a time and not rush the process.   We want her to be fully ready and possibly even weaned off the oxygen completely.  We look forward to another good report full of progress tomorrow!!

NICU Day 118 ~ (April 15th)

Yes, you read the title correctly, and we are counting NICU days again as Noelle had emergency surgery last night and was readmitted into the NICU at Baptist for recovery.  She is doing well overall, but the last 30+ hours have been quite the ride, and this post will be a little lengthy in catching up the details.  I have debated many times in my mind as to how much I should share, but ultimately we desire for people to pray specifically for Noelle and hope that these details will fade in people's minds as she grows old enough to understand herself all that has happened these first several months in her life. 

~The sweet baby cupcakes that Travis & Tawn made for our baby shower~

 Yesterday began with the joyous occasion of a baby shower for Noelle at the generosity of sweet friends from our church family, and I enjoyed a wonderful time with many of the women in our church while Tom stayed home with Noelle.

~Four Generations~

We then said "see you later" to my mom who had been able to visit while  out here for an event in Greenville, SC.  My grandparents had also come over for the morning so my grandma could attend the baby shower, so we were able to get some special pictures before everyone left.

~My grandparents & Noelle's great grandparents~

~Our little family~

Soon after that, we headed up to the NICU at Forsyth to deliver leftover cupcakes, to visit, and to also have Noelle's nurses check out her inguinal hernias.  Before we had been discharged on April 2nd, they had taught me how to reduce her hernias and what to watch in regards to them.  Last Thursday we saw a surgeon who was unable to reduce her hernia for the first time.  I had not had any issues prior but we left with the instructions to let her know if it still was not reducing in a few days.  I knew what else to watch from the Forsyth nurses, so when it started turning pink on Friday night and even more red on Saturday, it was time to get it seen.  We received confirmation on Saturday afternoon when her nurses took one look at it and told us to go get it checked out, thus beginning our "bump in the road" of the last 30+ hours.

~Waiting in our triage room in the ER~

We arrived at the children's hospital ER around 6:00p.m. and while we spent some time waiting through the next six hours, the majority of the period was involved with evaluations and many attempts to reduce the hernia.  Finally, after a combined effort on the part of several doctors and the pediatric surgeon, they determined that they had no recourse but to proceed with emergency surgery.  The concern was that something was caught {often intestine}, and when it reaches the point which Noelle's had, it usually means something has been compromised.  She went into surgery at approximately midnight and was out of surgery and into recovery in the NICU within 2 1/2 hours.  The surgery went well overall, but they did discover that one of her ovaries and fallopian tubes had been caught and twisted in the hernia and had died, requiring removal.  While the results saddened us, it honestly was good news in light of the entire picture and all the possibilities that had been present.  Had it involved compromised intestine, the surgery would have been much more difficult and the recovery much longer.  Her body should adapt and operate very well with only the one ovary, and we are very thankful for God's guidance and protection through the process.

~Noelle recovering after surgery~

We were able to see her shortly after she was admitted into the NICU, and it was heartbreaking to see her tiny body after so many hours of trauma.  She was extremely pale and still under the influence of the anesthesia, but she did hold onto our fingers and showed faint signs of her normal self. 

~Holding onto Daddy's finger~

~Holding onto Mommy's finger~

We went home and slept for a few hours before heading back up to the hospital and were encouraged to see more signs of improvement as the afternoon progressed.  They expect her to be extubated sometime tonight or early tomorrow, and we hope to be home by Wednesday at the latest.  Ultimately, we know that God had this timing already planned and had everything in place for her to receive the care He desired on this specific day.  We knew she would eventually need this surgery, we had just planned for it several months down the road and were not expecting this to happen in the manner that it did.  Still, we are very grateful that we can "check this off the list" of things to be accomplished in Noelle's tiny life and pray that she will recover quickly and be back to her normal self.

Tonight, she looked much better than she did nearly 24 hours previously, and we cannot thank you enough for your continued prayers.  Our biggest concern right now is her breathing and the need to come off of the ventilator as soon as possible.  She already has CLD {chronic lung disease}, and each day on the ventilator only adds to the issues with her lungs.  We will continue with daily updates while she is in the NICU and look forward to the day we can again bring her home.  Thank you so much for you continued love and support and your faithful prayers before the throne of grace.  God has been faithful to see us to this day and will not leave us for one moment of this process.  We are ever grateful that He holds our days in His loving hands.

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 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 43 (January 19th)

We are so excited to be reaching new milestones with Noelle.  Today she was extubated and graduated to the CPAP machine!!!  They were not planning on doing it quite this soon (they were going to give her a little more time to grow), but her tube had a leak and needed to be changed so they decided to go ahead and switch her over and see how she does.  So far, she has done extremely well and has already been weaned on her settings twice.  They have warned us that this could be temporary.  She could get tired and worn out from breathing on her own after a period of time and may have to go back on the ventilator and grow some more.  We are trying to mentally prepare ourselves for this, but right now we are just rejoicing at her progress!!  It is so fun to see her tiny little mouth, and now we will be able to hear her tiny little cry.  Whoever thought that a cry would be such sweet music to one's ears?!!  Noelle's other milestone was gaining 10 more grams and more than doubling her birth weight.  They are hoping she will continue a steady gain of approximately 1/2 oz. (or 15 grams) per day.  Tomorrow should present yet another milestone as they plan on removing her PICC line.  We are so excited to see machines being moved away from her bedside and others being turned off.  She had a steady stream of nurses coming by this evening checking out her progress...she has quite the fan club (as they themselves put it), and many of them even call in and check on her during their days off.  We are so incredibly grateful for the care that she is receiving and thank God once again for placing us where He did during this time.  It is also encouraging to us to share with the nurses that so many people are praying for Noelle and have them be excited about that and acknowledge how powerful prayer is.  We're praying that it gives us many opportunities to share Christ with all those we are encountering so thank you for being a part of that testimony and praying for us!!

NICU Day 41 (January 17th)

Thankfully, there really is nothing new to report today.  The doctors are still working on switching her medications over so that we can get rid of the PICC line soon.  It will still be a few days as they will wait to see how she tolerates everything with the switch and then take the pic line out.  We are really looking forward to that--it means that much less that is attached to her and makes her much easier to hold!!  The same discussion is still going on as far as her ventilator as well so I imagine we will be seeing something happening with that by the end of this week.  She had an eye exam today which was good.  It showed that her eyes are immature as of yet, but that is to be expected since she is still so small.  Preemies eyes are prone to a lot of different things including blindness, so we are just thankful that she is doing well so far.  She did have testing done that showed early signs of Rickets due to the lack of nutrition when she was off her feeds for so long (they supplement what they can in the IV fluid but it doesn't always cut it).  They are giving her a supplement to help with this and hopefully counteract any further progression and reverse the level that she already has.  I believe we forgot to report that all of her blood work which they were testing genetically came back completely normal--no chromosomal issues at all.  It doesn't rule out all syndromes, but at this point it looks as if she was just extremely small.  We may have some answers for that as well as we just got the pathology report back on the placenta.  The doctors have ordered some blood work for me to determine if I have a blood disorder (I already have one), and this may have caused the issues with the placenta and thus the small growth for her.  We are praying that they get some answers from this as it could really help us avoid issues like this in future pregnancies.  Another prayer request is that it seems I am trying to fight a cold.  It is not full blown yet but seemed to get a little worse this afternoon and so I stayed home from the hospital tonight.  It's tough to stay away but it's the best thing I can do for her right now.  A cold or flu virus in her fragile body could turn all of these good days in the exact opposite direction so we are earnestly praying that she stays healthy during this time and doing our best not to expose her in any way.  We're so thankful to God for each day of life He has given to Noelle and especially grateful for this past week of good days.  We pray that it continues in that direction and that we can report another good day again tomorrow.

***Huge Praise: the cold turned out to be only allergies!***

NICU Day 40 (January 16th)

As I type "Day 40" I can hardly even believe it has been that many days since Noelle was born.  Really?  So much has happened during that time, it's almost unbelievable.  We are still almost 5 1/2 weeks out from her original due date and even at that, she was measuring only about the size of a 22-23 week baby when she was born one day shy of 29 weeks.  Her nurse practitioner said today, "I came and looked at her today and couldn't believe how much she'd grown, and then I was even shocked that I was thinking that about a baby that currently weighs only 630 grams!!"  She did lose some weight and is down to about 1 lb. 6 oz. currently.  This is normal, but we are hoping that she starts packing on the ounces more quickly since she is starting to do so much better.  They weaned her off the nitric oxide completely today and are discussing moving her medications over to oral ones so that we can also get rid of her PICC line soon.  It's nice to see machines and lines disappear from her bedside!!  The big discussion is now is when to take her off the ventilator and try her on the CPAP machine.  We are excited for them to do it soon and yet at the same time do not want them to rush it if she isn't ready.  It looks as if it may happen this week though since she is on the lowest settings on her ventilator, and they can't wean her any more.  It looks like they will have to give her a little mask when they move to the CPAP because the smallest nose prong tube is still too big for her little nose!!  All in all, it still was a "boring" day, and we are so thankful to God for that.  Thank you for rejoicing and continually praying with us!!

NICU Days 38 & 39 (January 14th & 15th)

The last couple of days have been "boring" days as they call them in the NICU...the very best kind.  It means that she is doing well, and there is nothing significant to report.  She is on the lowest possible settings with the ventilator, and her nitric oxide for her heart has been weaned again as well, and she may be off of that completely by next week.  They could also try to wean her completely off the ventilator very soon, but the doctor is not wanting to be aggressive with that since she is still so small, so it may be a little bit of time before that happens.  She now weighs 1 lb. 8.3 oz. so she is very close to doubling her birth weight!!  Other than that, she has just been resting and growing.  It's nice to be able to tell that she is feeling so much better.  She sleeps more peacefully, and she is much more content even when she is awake.  Even taking her temperature does not seem to bother her like it used to this past week.  We are so thankful to have these uneventful days and see her doing so well.
Some have asked us to share specifically how you can pray for us, so I will list some things below:

~Our Marriage--The last few months have been some of the most trying that we have been through as a couple, and we have been drawn closer to God and to each other through it.  But please pray that we walk in the Spirit and do not allow the pressure of our situation to cause us to be proud and selfish and treat each other wrongly.  We're definitely learning that we have to communicate even more during this time and guard against assumptions or certain expectations.  Overall, we feel God has really protected us in this area, but we've definitely had our moments that we've had to sit down and really talk through things.  Of course we had to all this before, but at times right now it seems more heightened than before, so we definitely appreciate your prayers in that regard.  (And please don't think that we aren't getting along or are really struggling in our marriage.  We really are doing very well overall and this has truly strengthened our relationship, but we want to be on guard and protect our relationship with each other and thus are just being transparent and appreciate your prayers).

~Health and Rest--we are right in the midst of cold and flu season, but with preemies being so prone to any kind of infection, it is necessary for us to stay healthy in order for us to visit her and be of any benefit to her.  We really appreciate those of you who have stayed away or kept us away during times that  you or your children or sick.  It means so much to us that you think of how such a thing as the common cold could impact Noelle.  We're learning right now that sometimes we have to make the decision to stay at home and get some extra rest as opposed to being at the hospital for that period of time.  We're still up here every day, but sometimes we leave earlier or come up later so that we can do our best to stay healthy.

~Increased milk supply to keep up with Noelle's growth and provide for her needs.

Thank you once again for your love and care toward us and for your genuine concern.  We hope to report another "boring" day tomorrow!!

NICU Day 37 (January 13th)

We had yet another really good day with Noelle.  She is a completely different baby than she was a week ago, and the doctors and nurses are just amazed!!  It is incredible to go from one end (your nurse crying as she says good bye to you for the evening after a really bad day) to the other end (everyone just smiling and happy about her progress), and we know that it is only of God that she has made a complete 180* turn this week.  Thank you for your persistent prayer before God's throne for her--God truly uses it in our lives to bring glory to Him and cause us to recognize our complete dependence on Him for every step of life.  They continued to wean her ventilator settings today since she is doing so well, and basically she is now just on the minimum.  They could be more aggressive about weaning her and extubating her, but since she is still so small, the doctor is not anxious to do that--everything is to be done in tiny baby steps with her.  So, she will probably sit at these settings until her oxygen level is down to 21% (this is room air / what we breathe).  She has been sitting anywhere between 25% and 35% consistently so she really doesn't have far to go for that!!  We don't want them to rush things, but we are really excited about her being extubated soon...just the fact that it is starting to be discussed is incredible, especially after last week!!  Her echocardiogram revealed that her heart is still continuing to improve.  They are going to continue her heart medication until it is more improved, but they were able to wean her nitric oxide more based on what they saw.  That is still a matter of prayer and yet a huge praise at the same time!!  We are so grateful for God's evident hand on her life.  We are really enjoying our time with her, and it is fun to start seeing her personality come to life.  She definitely knows what she likes and does not like!!  She seems to be a content baby as long as she is not being poked or prodded or held down in any way.  The nurses are amazed at how strongly she pushes against them when they are trying to do a procedure on her!!  I hate to see her crying and pushing against them, and yet I am thankful that she isn't just lying there and being apathetic about it.  On the other hand, she is really responsive and loves to hold and squeeze our fingers or follow our voices with her eyes--so sweet to watch.  She also has made it clear that she prefers to sleep on her tummy as opposed to her back, and she likes her back to be rubbed as well.  These seem to be such little things in one sense, and yet it is fun to see some of these traits that we know will be evident for the rest of her life.  We continue to thank God for our tiny miracle and praise Him for what He has done and what we have faith He will continue to do.

NICU Day 36 (January 12th)

~Tom truly holding Noelle for the first time~

Noelle turned 5 weeks old today...I can hardly believe it!!  She was
doing well enough that Tom was able to hold her for the first time
(Kanga Care) for an hour this evening.  An hour has never gone by so
fast!  They continued to wean her ventilator settings today (slightly)
as she was responding well to that, so that is a huge praise.  We're
hoping that she can come off of that machine within the next week or so
and be extubated and move to a CPAP machine.  I can't wait to see her
little mouth!!  I'm also looking forward to her being more
comfortable--she is moving so much more these days that it often affects
the position of her tube and bothers her.  She weighed in tonight at 1
lb. 7 oz. so we're excited to see progress there as well.  It is already
hard to imagine how tiny she was when she was born.   She is still so
small and yet she is very close to doubling her birth weight.  She will
receive an echocardiogram tomorrow so we're looking forward to seeing
how her heart is doing at this point.  Other than that, there is not
much to report (which is a good thing!).  As always, thank you for

praying!!

NICU Day 35 (January 11th)

God was very gracious in giving us another good day with Noelle.  She actually came off her jet ventilator today and is now on a conventional one.  Hopefully she can stay off this time and continue weaning down until she is breathing completely on her own.  Typically they go from the ventilator to a CPAP machine so we are hoping that can happen soon.  She did not gain any weight but she did not lose either, and they increased her feeds once again so hopefully that will help her continue to gain weight.  She really is starting to look and act like a normal term baby--which is fun to watch.  Today she was even a little fussy (although we cannot actually hear her crying with the tube down her throat, we can see her little face all screwed up and her mouth wide open when she is crying), but mommy was able to settle her down by rubbing her back or patting her on her little diaper.  As far as her heart, they are planning on repeating another echocardiogram on Friday so we are praying that continues to show improvement as well.  For us, it is taking some time to figure out a new "normal" schedule.  With so many ups and downs the last couple of weeks, this is the first week for us to really get back to some sense of reality at home...bills, laundry, etc...all the stuff that does not stop just because your life seems to be on hold for the moment.  Plus, we are on the same schedule as any other family with a term baby which they are nursing, and that includes middle of the night "feedings" as well.  It is the one way we really can be involved with Noelle right now in contributing to her care. As always, thank you so much not only for praying but for letting us know that you are praying...it's an incredible encouragement to our hearts.

NICU Day 27 (January 3rd)

We are thanking God for another good day with Noelle.  She was quite opinionated today and was letting everyone know that she wanted to be left alone!!  They think it's a good sign that she is feeling better while on the other hand, it is giving us a glimpse of what we're in for!!  We'll take it though!!  The echocardiogram revealed that she had a very small PDA (opening in her ductus); however, they did not hear a heart murmur today so they think it may have closed off and will check again in a couple of weeks to confirm it...HUGE praise!!!  She gained again and weighs 610 grams although they believe she will drop some of this as she is retaining fluid right now.  But, she is looking bigger and is not overly puffy so they think some of it is actual weight gain along with the fluid, so hopefully when she starts feeding again on Saturday we will really start seeing those numbers climb.  Overall, it was an uneventful day (and we love those!!).  The main goal of the doctors right now is to get her weaned off the ventilator.  It's important they do this soon as the longer she is on it the more likely she is to get lung disease.  Thank you so much for praying for our little girl!!  I hope we can report another good day to you tomorrow.

NICU Day 26 (January 2nd)

Today was an evidence of all the prayers for Noelle.  She is very stable and had a great day, for which we are very thankful.  She had the echocardiogram today so we should hopefully know for certain tomorrow whether or not the ductus is closed.  The tech did not see it on the ultrasound today, so the doctor wants the cardiologist to review it to be certain.  Clinically, her stats show improvement, and they are not sure if that is due to the ductus or the antibiotics fighting off an infection.  Either way, we are grateful.  She had a "lab holiday" today which means that she was stable enough for them to "leave her alone" and not get blood work for the entire day.  We especially love this because it means she is not getting stuck.  She was able to be weaned on her ventilator settings a little more today which was another great sign.  The longer she is on the ventilator, the more potential there is for lung disease/damage so the sooner she can get off of it, the better.  We know we still have many days ahead and the roller coaster is not finished yet, but we are thankful that we rest in the hands of a loving and gracious God who is guiding us each step of the way and who gives us these encouraging days amidst the ups and downs.  Thank you so much for praying for us.

NICU Day 23 (December 30th)

Today was a pretty stable day for Noelle, and we are so thankful for that after the last few days of dipping up and down on the roller coaster.  They did an echocardiogram today to check on her PDA and hopefully will have the results of that tomorrow.  They also did another cranial ultrasound to make sure that the blood clot in her brain is diminishing and resolving itself, so hopefully we will have those results tomorrow as well.  They took her off the jet ventilator today and then put her back onto it again as they are trying to figure out the best settings to help drain the fluid in her lungs that has collected because of the PDA.  It has its pros and cons both medically and comfortably for her as she does not like the jet ventilator as well and often tries to breathe over it (which they do not want her to do when she is on it....it defeats its purpose).  She also gets extremely agitated on it so they finally gave her a fentanyl drip to help her calm down, and she seems to be doing much better.  She was alert for quite a bit tonight, and it is fun to talk to her and watch her eyes follow our voices as we speak and read to her.  She definitely seems to recognize our voices--so we try to speak to her when things are calm and not when people are poking her--we don't want her associating us with pain and prodding!!  She also reached 510 grams today, praise the Lord!!  She is even physically starting to look a little bigger, and it's exciting to see the small amounts of growth in her.  We are so thankful for these past 3 weeks and thank God for each and every day that He gives us with her.  She has blessed our lives so much already, and we are ever grateful to Him for how He is using her to mold and change us and draw us closer to Him.  Thank you for being a part of that process with us!!

NICU Day 20 (December 27th)

 ***Written by Chris McDowell, Jill's Mother***

Yesterday the doctors noted a heart murmur which they were hoping was due to low hemoglobin.  She received her transfusion yesterday and was pretty stable.  pH level in her blood gases were just barely under the norm, but they were consistent with her heel stick which they said was good.  This morning they felt the heart murmur was a bit more pronounced and during morning rounds the nurse changed her diaper and there was some blood in the stools.  They quickly began ordering different tests to try and determine the cause.  The xray revealed that her intestines are fine (so no NEC at this point).  The echocardiogram showed that the ductus arteriosis (an opening in the heart that helps shunt blood away from the lungs and to the body when the baby is in the womb and begins to close within a few hours to a few days after birth) was actually more enlarged than it has been.  They knew it was open -- this can take a while with the preemies, but because it is more open it is shunting blood away from intestinal circulation (thus the blood in the stools).  If this does not improve to a certain level then Noelle is in danger of going into congestive heart failure.  One drug that helps with this also restricts blood flow so due to the fact that her intestines are already sensitive they will not use that.  She is not a good candidate for surgery at this point -- she weighs 440 grams and they have not done this surgery on a baby less than 500 grams.  At this point in time they feel their only option is treatment with ibuprofen (it's specially formulated).  It will be given once every 24 hours (over a 30 minute window) and for the next 3 days.  They also put her back on the jet ventilator which will help them regulate her blood pH levels which could help with the closing of the PDA (patent ductus arteriosus).
This is life in the NICU.  Things can seem to be going along nice and steady and one thing can tip everything upside down.
We truly know that God has given a gift of 20 days thus far and our prayer is if it be His will that He would graciously guide the doctors and through His strength Noelle's body would respond to the treatments. 
We appreciate your love and prayers so much. 
God Bless.

NICU Day 15 (December 22nd)

Noelle had the best day yet today according to the doctors.  She turned two weeks old today, and her progress is pleasing to all of them!!  She is doing so well on the new ventilator that they completely took the jet ventilator away from her bedside today.  Her lung has improved and no longer has any collapsed areas, and they are hoping that they can wean her from this machine and go to a CPAP machine within the next 10 days or so.  It would be incredible to have her breathing tube removed!!  She is tolerating her feeds so well that they have decided to start boosting them every 12 hours instead of every 24.  She still is not anywhere close to what she should be getting, but at least she is slowly increasing each day, and that is a great sign.  The highlight of the day was that Jill got to hold her for 3 hours!!!  She snuggled right in and went to sleep for most of the time, although we have started discovering today that she definitely likes to be sucking on something whether her fingers or the pacifier that the nurse found for her.  It is the smallest one they had, but it is still half the size of her face!!  Still, she took right to it, breathing tube and all and loved having the tip of it in her mouth to comfort her today.  She also reached 440 grams or 1 lb. in weight today, so that is another huge milestone for us!!  They are hoping to increase her caloric intake from the 60 calories she has been getting to a whopping 120 calories very soon and would like to see her gaining about an ounce every two days.  We thank God for yet another good day in the NICU with our precious girl and pray that He continues to use us as a testimony of His grace to all who are watching her. 

NICU Day 14 (December 21st)

Noelle had a good day overall today.  They still have her on the new ventilator and have not put her back onto the jet ventilator as of yet so we're hoping this will stick with her and she can graduate to the CPAP machine in another 10 days or so.  Her white blood count was lower today and no news has come back regarding an infection as of yet, so we're thankful for that.  Her blood sugar has been stable, and they are trying to adjust her different fats/nutrition that she receives to help her start putting on weight and growing.  We did find out today that she had what they consider to be a level 2 brain bleed.  They re-evaluated her last cranial ultrasound with a neurologist and believe they saw a small blood clot; however, this level is not usually anything that has long term effects, and she does not seem to have any side effects currently from it.  They will continue to do ultrasounds every week or two to monitor it just to be safe, but they believe we are past the worst danger point for her to develop anything further with it.  There still is a concern for her to develop NEC, and this will be the most crucial for the next month or so.  Currently, she is tolerating her feeds very well, and they bumped her to .6 today so we are thankful for that too.  Overall, a good day and another day down.  She will be two weeks old in just a few more hours!!  Thanking God for each day...