Giving Thanks Challenge ~ {Day #15}

Thanksgiving Challenge ~ Day #15

Topic: Noelle
Title: A Much Improved Health Report

{If you are new to this challenge, you can catch up on the details here, and please feel free to join along at any time...}

I have been blessed to experience very few health challenges in my life; and the few things I encountered along the way have all been manageable with very little medical intervention.  And although I come from a family full of medical personnel, we all seem to do our best to pursue a more "natural" route and avoid medicines and the doctors' offices as much as possible.   So this year has been one of much change, especially in the way we have mentally handled things.  Noelle's severe health issues and compromised immune system have never afforded us the option to allow things to run their natural course, as this choice would have taken her life more than once.  So while I look forward to the day we begin eliminating medications and crossing issues of the list, in the meantime I am very grateful for the medical intervention we have received with so many doctors and medications and treatments made available to her.  This has been a big week for us, not simply because we had so many appointments, but because these were very crucial follow up visits after giving her body some time to heal from her last bout with pulmonary hypertension and the long hospital stay.  We expected some good news, based on her clinical condition we were seeing at home; but I think we were still surprised at the level to which she had improved.  We could spend a full day being thankful for each one of these following items:

1.  Noelle's pulmonary hypertension is greatly reduced, and her heart is demonstrating normal function once again.
2.  She is doing so well with her saturation levels, she is now allowed to be sans oxygen during her wake times (she still wears it while sleeping only).
3.  We will be eliminating one of her medications within the next couple of weeks.
4.  She has shown good overall growth in the last three months.  They did increase her calories to help her continued growth, which has slowed down; but her long term growth is still looking great.
5.  Her plagiocephaly has improved immensely, and it appears that she is in her final eight week stretch of wearing her helmet.

~Left Side: Noelle's flattened head, 4 months ago~ ~Right Side: Noelle's head this week...almost completely round!~

The summary is that her overall health report is very much improved, and her entire medical team is extremely pleased with her progress.  So although it has been a full and very busy week, the subsequent good news from each doctor has given us much encouragement and yet another reason to be ever thankful.

Giving Thanks Challenge ~ {Day #9}

Thanksgiving Challenge ~ Day #9

Topic: Noelle
Title: Oxygen {as in the kind you get from a tank}

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


Oxygen paraphernalia decorates our home these days as it fills corners and weaves its clear, thick tubing through the living room and down the hallway and into the bedroom, or wherever the little girl who is attached to the end of it happens to be.  A box-like machine creates the oxygen Noelle needs on a constant basis, while a large back-up tank and small transport tanks sit on stand-by for emergency power outages or trips to the doctors' offices.  Although it requires some attention and maintenance once in a while or even some additional preparation time before going somewhere, it has become our normal way of life; and we rarely think twice about it anymore.  Well, most of the time.  There have been times in the past, especially when we first brought Noelle home, that I was much more eager to be rid of this inconvenience.  However, I was also grateful to have her off the ventilator and needing only a very low support of oxygen, so my emotions were somewhat mixed.  But that all changed drastically after her eighteen day stay in the hospital a few short months ago.  After weaning off the oxygen for a short time in April, she had begun a very slow and steady decline; and the lack of additional oxygen, although not the cause, became a contributor for aggravating her pulmonary hypertension flare-up.  Needless to say, between that and all of her sleep apnea and study issues, I have not been nearly so eager to wean her this time.  In fact, I have actually preferred that she have the support.  We are often asked when she will be completely sans oxygen, and our answer is the same as what the doctors say to us, "she will tell us."  It is a standard statement that we often hear with much of her care, meaning that they do not really know and can only watch her little body for signs of being ready to take the next steps.  So we wait {patiently, I hope}; and look forward to her appointments on Monday that may give us the signs of improvement necessary to take another step forward and begin the weaning process once again.  They will do it over a long, slow process this time; but I am grateful that Noelle is able to have this same breathing support at home that she once had in the hospital for so long.  Any amount of inconvenience is entirely worth the effort in order to have our sweet girl home with us at all times.  So while I have not always had this attitude on this particular aspect of Noelle's care, I can thank God that He has changed my heart and made me grateful for both the additional oxygen support for Noelle, as well as the natural oxygen He provides for us every moment of every single day. 

If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  

***Do not forget there is less than one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Eleven Months Old / Giving Thanks Challenge ~ {Day #8}

Thanksgiving Challenge ~ Day #8

Topic: Noelle
Title: Eleven Months Old

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

~Really, Mom?~

I can hardly believe that I just wrote the title, "Eleven Months Old."  Where has the time gone?  There have been so many days through these months that I have not dared to think beyond the next hour or the next day, let alone dream about reaching her first birthday; and yet, here we are celebrating eleven precious months with our little girl and entering the home stretch to her one year birthday.  I am overwhelmingly amazed at God's goodness to us and thank Him for each precious moment we have been given with this little girl.  She weighed 10 lbs. / 10 oz. today and continues to fight and grow, tiny though she still may be.  Happy Eleven Month Birthday, Noelle!!  We love you!!!

{Although she is still on oxygen 24/7, she is doing well enough for us to remove the cannula for short moments of time, such as snapping pictures. }

If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  

***Do not forget there is only one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***

Update After Update...

This post will include updates on Baby Shane, Baby Kara, and our own Baby Noelle...


Baby Shane

~Baby Shane with no ventilator tubes!~

~Bright Eyed~

If you missed the original post, you can read about Shane here.  Scott shared this updated today: "Holding steady for now.  Extubated the other day, but failed w/o a cannula. Had trouble over the weekend detoxing, experiencing withdrawal from the pain meds {which we were told were 10x stronger than morphine}. Still can't hold him until the chest tube is out...may try clamping it tomorrow or the next day. Removal is contingent on him being able to sustain normal breathing for an extended period of time."  Please continue to pray for the Logan family as Scott started his new job this week a couple hours away from Philadelphia {where Shane is currently located}, and I am sure they have a lot of details to sort through, not only with Shane's situation but also with a new move across the state from their home in Reading.  If you would still like to help this family, donations can still be made through the website Standing with Shane to aid them with the daily expenses they are currently facing in this situation.  Most of all, thank you for your continued prayers!!


Baby Kara

~Kara & her nurse Sonya, as Kara leaves the hospital~

~Kara taking a bottle~

This sweet little miracle continues to amaze people with the strides she is taking each day.  If you missed the original post about her, you can read it here, and you can also catch up on her daily progress at her own Caring Bridge site, http://www.caringbridge.org/visit/karahuggins.  Kara now weighs just over 5lbs., is on only 25cc of oxygen, and was able to go home yesterday after 114 days in the NICU!!  

Please continue to pray for her and her parents {Kevin and Kim} as they adjust to life at home with Kara {and yet, without precious Kahlan} and still are uncertain what they will face down the road with Kara due to her original brain bleed.  So far, she is doing far better than anyone ever expected, and we thank God for this amazing miracle that continues to display His power and might to all that see and know of her. 

Baby Noelle

~This rice cereal is not bad...~

~...but I still like my fingers better!~

This little girl continues to keep me on my toes as we persist through multiple appointments and an overload of information!  I am constantly made more aware of the host of issues that so many children face and am ever grateful that God never gives us more than we can handle {or should I say, what HE can handle through us!}.  Noelle had a wonderful report after an echocardiogram and an appointment with her cardiologist on Monday.  The pulmonary hypertension is greatly reduced, and the function of her heart is much improved, to the point that her cardiologist does not have to repeat the echocardiogram or see her for three more months!!  This news was very encouraging to us since we take a lot of our cues from her medical team, and their urgency for her to be seen often tells us their level of concern {for there is never a lack, if it is necessary}.  She will still be on oxygen for quite some time since we will not even discuss weaning it until November {depending on how she is doing at that point}; but it has become a part of life for us, and I would truly rather she be on the oxygen than more medications to help her heart and lung issues.  Yesterday, she had a full check-up with her pediatrician, since we have created our own well-check schedule for Noelle on top of the constant monitoring she is already receiving, and she weighed 7lbs. 12.5oz. {and yes, we count every gram and half ounce!}.  I had expected her to pass 8lbs. by now, but because she is getting older  {even by her adjusted age of 5 1/2 months} we are uncertain as to how her growth rate will now happen.  Thankfully, everyone is looking at things over a long period, and she is doing pretty well by those standards.  We will just have a tiny girl on our hands for a very long time, and I am going to continue enjoying this very long baby stage and the small, newborn clothes.  Someday, I know I will wish she is this small again!!  In the meantime, Noelle is being allowed to try some "big girl" things such as sleeping through the night and eating rice cereal, both of which are going quite well.  I was actually a little disappointed at her lack of response to the rice cereal but should have expected it since she has had a variety of medications put into her mouth for months.  Hopefully, we will get some more animated reactions when she graduates to fruit and vegetables!  We are looking forward to getting through next week which includes appointments with her neonatologists and child developmental services {CDSA} along with a sleep study which will require an overnight stay in the hospital.  Our hope is that the results of this study will complete a picture for proper diagnosis of her many oxygen de-saturation episodes that happen while she is sleeping.  After all of that, it appears that we finally have a week free of appointments before they start again in September; and while the schedule truly does not bother us considering all we have been through, we are looking forward to the short break.  As always, thank you for sharing in our many joys and for continuing to pray for our little girl; and we look forward to sharing again how God continues to work in our lives.

PICU Day 18 ~ Full Update

~Smiles after being told we were going home!!~

Today started like every other hospital day with the Lovenox shot at midnight, a bottle, a few hours of sleep, and then labs and another bottle at 4:00a.m.  I was especially anxious to get this particular set of labs over since they were planning on doing an arterial stick in the hopes of getting a more accurate reading for the blood gas.  The arterial sticks are more difficult than even the regular ones they take each day; and at Baptist, the nurses are not allowed to do them.  So a respiratory therapist came and tried once, failed, and they decided to simply do a regular blood draw from the vein.  Thankfully, we had a good nurse who had been able to do it in one try the previous night and again got it in one try this morning.  We were especially looking forward to these results since they would tell us the CO2 level in her blood and let us know whether or not we were on our way home.  Mid morning brought an x-ray, but this was different than all the other x-rays which we had had done at the bedside (with a machine they wheel around the hospital).  Instead they brought in a wheelchair with an attached oxygen tank, had me hold Noelle while seated in the chair, hooked Noelle up to the tank, and then took us up one floor to the radiology lab to have a fully detailed x-ray done.

~Final hospital snuggles with Daddy~

~Almost ready to go...~

Poor little Noelle did not know what to think when they strapped her to a board with her arms above her head and took pictures with her lying flat and then on her side (she was strapped to the board and her face was quite funny as she was "suspended").  Late morning, the medical team finally made their rounds and had three great things to report to us: 1. The CO2 level was still on the high side but was significantly better than the previous day, 2. The blood clot in her leg was completely gone and thus the Lovenox shots would not be required any longer, and 3. We were going home!!!  That news was music to our ears, but we could not rush out the door as there were reports and prescriptions and final procedures to complete.  The news of the blood clot was an extra special praise to us as it could have been quite serious and caused some damage, but it was also a praise since it meant we would not be required to continue those shots at home (which I was dreading, even though I would have figured out some way to deal with it...without doing it myself!).   It was also one less thing to concern us and to watch closely, amidst the many other issues

~A friendly reminder to well-meaning people~

for which we were already facing extra doctor appointments and close following.  The rest of the day was spent with the typical feeding schedule, vital signs, filling prescriptions, speaking with various specialists and other medical staff, visiting with a dear friend from church, getting discharge instructions, scheduling follow-up appointments, and packing up everything from our 2 1/2 week stay.   By the time we had done all of that, signed our discharge papers, made multiple trips to the car with our stuff, connected Noelle to our own portable oxygen tank, and situated her in her carseat, it was after 8:00p.m.; but we did not care since we were going to be going home!!  With some final snapshots and a few goodbyes, we were on our way; and walking through those hospital doors to the outside world felt like true freedom.  I had not stepped outside that facility in five days and had made it home only a few times during the entire 18 days, so I was especially looking forward to having my family all together in our own space once again, with no more midnight shots, no 4:00a.m. and 4:00p.m. labs, no more x-rays or ultrasounds, and so many other things.  The sleepless nights would continue~that is just part of being a parents; but we would still get more sleep than we did in the hospital, and it would certainly be more restful.  We made it home around 9:00p.m. and

~Fully enclosed & ready to ride~

~Ready to leave our room~

connected Noelle to her oxygen machine and pulse oximeter, unloaded our vehicles, fed her, and readied for our first night home.  It was an adjustment~mostly because the pulse oximeter decided to false alarm multiple times through the night.  However, Noelle rested very well without the usual interruptions she was used to experiencing, and the smile she gave me first thing the next morning melted my heart and made me so thankful to God for bringing us through this event in the manner that He did.  It was not without fears or struggles or tears; but it was also never without true peace, and the fears and struggles were dealt with best when left at His feet. 

~Sweet smiles after the first night home~

So now what?  We continue to make the adjustments of being home with a baby that is on oxygen, a monitor, and multiple medications while also making multiple trips a week to various doctors; but while challenging, it is worth every effort~especially when we consider the alternative.  This trip through the ER and PICU was certainly not easy, but we also saw many other children in those places who did not walk out the hospital doors and who will not walk out those doors with the same results which we did.  It keeps things in perspective for us, even as we walk our own road.  We have been warned that more hospital stays are likely in our future, given the severity of Noelle's lung condition; however, we also know that we will not end up there again without God's sovereign allowance.  So we walk through these days with caution, with protection, and ultimately with trust, knowing that He has gone before us; and we look forward to the days when we can "relax" and deal with the "easy" things such as teething, trips and falls, stitches, broken bones, and the various emergencies that "normal" children and parents face on a daily basis.  In the meantime, we do not take one day for granted and continue to thank God for this precious miracle that grows more and more dear to us each passing day.  May God richly bless you for your fervent prayers on our family's behalf.

PICU Day 18 ~ {July 12, 2012}

A full update will be coming sometime in the next few days, but we did want to thank people for praying and let everyone know that we are home!!!  God was gracious in so many ways, and you will understand more when we have a moment to share details.  We still spent a full day at the hospital today and arrived home around 9:00PM and are quickly trying to adapt again to being attached full time to oxygen as well as a pulse oximeter amidst the other adjustments of things such as administering all of her new medications according to the proper schedule.  However, it is worth every single "inconvenience" just to be home with our sweet girl.  Thank you for praying so earnestly for us, and we look forward to sharing the details very soon.  To God be the glory....great things HE has done!!!

PICU Day 12 ~ {July 6, 2012}

Today was a fairly uneventful day, and progress was made through weaning of the nitric oxide and the high flow nasal cannula.  Noelle should be completely off the nitric oxide by tomorrow morning, and she is currently on 2 liters through the regular nasal cannula, and we hope to continue to wean that before going home {we do not expect to wean completely off the oxygen but hope she is able to do well with less support than she is currently receiving}.  If she tolerates the absence of the nitric oxide, then the milrinone will be weaned through the weekend, and she can move out of the PICU.  She will then be monitored to be certain she is tolerating all of her medications well, and she will start taking her feeds by bottle again.  We will still be here for several days, but I think discharge may come sooner than everyone thought possible.  However, one day at a time; and for now, we are enjoying the little things we are able to do again to mimic her schedule at home when we have opportunity.  She enjoyed a partial bath tonight {we cannot submerge her since her heart catheter sites are still bandaged}, and we were even able to maneuver her various cords so that she could slip her arms through her little sleeper, partially wearing it and making her more comfortable for bed tonight.  I will post the rest of the day in a video and pictures.  Her poor little voice is so hoarse from the ventilator tube, but it makes her cry that much cuter to us!!  As always, thank you for your persistent prayers; and we hope to report more great progress tomorrow.

~Getting all the tubes & cords situated after the bath~

~Precious Smile actually caught on camera!!~

~Silly Face~

 ~Noelle telling us about her hospital stay~

PICU Day 3 ~ (June 27, 2012)

~Exhausted Little Girl~

While today was not an unsuccessful day, it was not a day of progression as we had hoped.  Noelle is still in the PICU; and at this point, we are unsure as to when she will transfer to the step down cardiac unit.  The attending physician for the PICU expects us to be here through the weekend, and the cardiologist seemed to indicate that we will be in the hospital for some time, even once we transfer to the step down unit.  There are still many questions right now and even more seem to be raised as we continue to go along in this process.  Another echocardiogram was performed today, and they spent approximately 3 hours scanning, evaluating, and taking multiple pictures for further review.  We should get a full report tomorrow, but the early report was that the right side of her heart is still not functioning well.  They are increasing her oral medication to help this, and hopefully she will respond accordingly.  A heart catheterization has been mentioned as the next possible procedure that will be done in order to measure the pulmonary hypertension level, so we are mentally preparing for her to be ventilated again for a short time as they will put her to sleep while they perform it.  She finally began to truly sleep again today, for which we are extremely grateful. Any time she has gone through highly stressful instances, she has been overstimulated to the point of extreme exhaustion.  Over the course of Monday afternoon through this morning, she had "slept" {it was not usually restful sleep} a total of approximately 12 hours; and for a baby that typically sleeps 16+ hours a day, it was beginning to take a huge toll.  However, along with that deep sleep today, she began experiencing some significant desaturations, and they are still trying to determine if these are due to reflux issues or if this is still a heart issue.  Consequently, they raised her oxygen flow once again {which they had weaned yesterday} and decided to insert an ng tube into her intestines to continue feeding her.  This should eliminate the reflux as they bypass the stomach and allow them to determine if the reflux is the actual issue or if they need to start her back on the milrinone medication for her heart function.  We are thankful that she can rest through the night and not be bothered with burning calories and losing sleep while eating her bottles and hope that this results in some marked improvement tomorrow, at least in her disposition.  You will notice in the pictures that her poor little fontanelle is quite sunken, and this is due to the diuretics they have been giving her to rid the fluid around her heart and in her lungs.  Thankfully, her lungs looked more clear on the x-ray today so they were able to decrease the dosage of the diuretics and hope her little head gets back to normal soon.

~Playing with her favorite toy~

I was encouraged to receive two smiles today...the first in a week!!  Those little smiles made my day, and she even spent a little time tonight playing with her favorite toy frog.  Those little moments of "normalcy" help tremendously as we wade through the serious issues.  Ultimately, through the numerous details and the host of unknowns, we continue to rest in God's hands and His sovereign plan as He reveals it moment by moment. Thank you for your fervent prayers for our sweet girl, and we look forward to what tomorrow will bring.

Most Recent Happenings / PICU Days 1 & 2 ~ (June 25th & 26th, 2012)

We will continue to post as we are able and will add pictures when possible, but Noelle has been admitted once again to Baptist as of yesterday.  She had not been herself for a few days, and I thought it was possibly due to her thyroid levels which we were having checked Monday morning.  Those levels actually came back too high {instead of too low, which I had wrongly suspected}, so yesterday afternoon I took Noelle to her pediatrician to address the lack of eating and constant drowsiness she was displaying.  However, when I pulled her out of her car seat at the pediatrician's office, she was a dusky purple color, fussing, and just not looking well.  They quickly grabbed some oxygen and a pulse oximeter {which proved her levels were very low} and called 911.  Within minutes, we were at the ED and being rushed through stabilization procedures and the admission process; and after an x-ray and echocardiogram, it was determined that her pulmonary hypertension is elevated once again and has caused the right side of her heart to fail.  This has also started leading to other issues such as swelling of her heart, slight depression of her left ventricle, fluid around her heart, and liver enlargement as well.   They do believe we caught it in the early stages, but it is unclear at this point how things will progress.  We are thankful that she has responded well to the treatment thus far (the same treatment she was given in January for this issue: milrinone and nitric oxide), and they are working on changing over this treatment to oral medications so that she can be managed at home after a few days and followed as an outpatient.  The large concern is that they are not sure what set things in motion for this to happen again, and this issue could go either way over time.  It could continue to get better and heal with time or it could worsen again and eventually need further intervention to keep her heart functioning.  Many things have been presented, but there are so many "what ifs" that we are just focusing on what we know and how she is currently responding in the moment.  She was acting more like her old self last night and this morning, although this afternoon she has reverted somewhat again; but we believe that is due to her large lack of sleep through the past 24 hours more than anything else.  Please pray for rest and strength...mostly for Noelle but for all of us, as well as continued wisdom for the doctors as they seek to understand what is happening, why it is happening, and how to properly treat what is happening.  Amidst the chaos, drama, and the multiple unknowns, there is still immense peace; and we know that God is continuing to shape and mold His plan for our little family.  Some lyrics from an old song kept floating through my head and were a comfort last night....

There is peace, there is calm in the midst of the storm,

The Lord is there beside me.

He gives grace, He gives power, He gives strength for each hour...

...

There is joy in my soul, for the Lord has control, 

And beneath are His everlasting arms.

Thank you for your faithful, constant prayers.  We will continue to update as we are able and as we have access to the internet.

Growing Girl

~Growing into her carseat!~

~Love play time with Daddy~

Our little girl seems to be growing right before our eyes these days, and we are loving every minute of this joyous process.  Perhaps that perspective seems somewhat unrealistic, but this does not mean that we are perfect or have everything under control or that we are never tired or exhausted with the normal, new parent issues.  We still experience all of that and must work through things just as any other set of parents or married couple.  What it does mean is that when I am tempted to look to myself and be selfish in any way, God directs my gaze to the precious miracle in my arms and consequently that gaze turns upwards to Him and can then only praise Him for all that He has done and is continuing to do in our lives.  He is working to change us, to stretch us and grow us into fit vessels for Him; and this process has not stopped simply because we have left the stresses of the NICU and have our baby in our arms.  I am so grateful for a God who uses multiple ways in our lives to conform us into His image and look forward to these coming years as we endeavor to raise Noelle for Christ and consequently become molded, changed, and stretched in completely new ways entirely!

~"I have no idea how this happened, Mom!"

Noelle finally seems to have settled into life with oxygen again.  She still does not appreciate the cannula in her nose and is forever inventing ways to get it out; but she does not get upset quite like she did those first few days after being put back on it.  She has become a master at getting the cannula off while she is sleeping, and I am constantly amazed to find it sitting neatly beside her head {as if I just laid it neatly beside her} or around her arm or completely out of her bed.  While she wears it the majority of the time, it certainly helps that she is not required to wear it when she is awake and not eating; and she can fully enjoy her playtime without any hindrance from the pesky thing. 

~Caught a wink & a smile~

She is smiling more and more every day, but they are difficult to catch on camera.  If she catches a glimpse of the camera, she stops looking at you and stares only at the little black box, which she seems to find quite fascinating.  We capture those sweet smiles whenever possible though!!

~My Grandpa Hummel's cradle~

For the past several weeks, Noelle has been sleeping in the bassinet which is a part of our stroller system.  It sat neatly on my nightstand right next to my head and was perfect for our situation when she came home.  In the meantime, my mom and grandma made a bumper pad {which attaches at the bottom so there are no spaces under which Noelle can slide} to fit this very dear cradle of my Grandpa Hummel's.  We believe this special piece was used even another generation before him, but we know for certain that Noelle is the fourth {if not the fifth} generation to sleep in this cradle.  I have fond memories of this piece as my mom used it for me and my siblings, and I am so thankful to be able to now use it for Noelle.  My task was to finish sewing the buttons onto the bumper pad, which I completed last week; so Noelle transitioned from the bassinet to the cradle a week ago and has done really well in her larger space.  She is still sleeping in our room and will continue to do so for the next few months, and I am in no rush to move her from our room or this cradle!!

~Walking outside with Gigi (Great Grandma)~

We finally were able to take Noelle on her first short trip to my grandparents home {approximately 90 minutes away} and spend the day last weekend.  We love visiting here and spending time with my grandparents and are so excited for Noelle to have the experience of growing up close to them, knowing them, and playing in the gardens.  Noelle's favorite part of the day was snuggling with Gigi {Great Grandma} and getting to know a voice that will soon be very familiar to her.What a blessing it is to have them so close to us!!

~"Can you just pat my back forever?"~

While newborn clothes still have plenty of room for her to grow, we are excited that her preemie clothes are becoming too small; and we have begun the transition into the next size.  We look forward to one day soon being able to report having reached the 6lb. mark!  Thank you once again for your continued prayers for our precious, growing miracle!! 

Little Miss Houdini & Mother's Day Weekend

~Oxygen back in the nose...not a happy camper!!~

Well, the tiny person in our household is not very happy with her mother tonight.  We had an appointment two weeks ago at which we discovered that Noelle's oxygen levels were borderline, but they agreed to watch it for a bit longer and wait until we made it through her echocardiogram this past week.  Unfortunately, the echocardiogram revealed that her pulmonary hypertension has not yet resolved, and they are also seeing a possible defect which may or may not be an issue for her at some point.  We will meet with the cardiologist in early July to determine what {if any} course of action needs to be taken, and she will probably be followed periodically for an undetermined amount of time regardless of what they decide based on this particular ultrasound.  The defect is an issue that presented itself shortly after she was born; but then because so many other critical issues arose, this specific finding was forgotten until just recently.  The great news is that she has not been affected clinically by these results.  She has presented no symptoms or major signs of distress, and so it is possible that this is her own normal; however, because it is not "normal" across the board, it will take some special follow-up care through the coming months.  They do not feel that the defect and the pulmonary hypertension are related, so our hope is that as the hypertension continues to resolve that she will be able to come off the oxygen completely again.  In the meantime, they do not want her heart working extra to help her breathe, and so they determined at her appointment today that her oxygen saturation levels are required to be higher instead of the borderline which she has been maintaining.  She is not required to wear the cannula at all times but only while eating and sleeping {which is most of the time}.  The next few days will take some adapting once again as we are "attached," but we easily fell into a system tonight for which I am thankful.  However, Little Miss Houdini has other ideas.  After nearly a month of freedom, she is far from thrilled at the accessory which again adorns her face and has tried many things to rid herself of the bothersome thing including {but not limited to} the following actions: pitiful looks, vigorous shaking of the head, sneezing, spitting, rubbing, and the tried and true good, hard yank.  The coming weeks should be quite the adventure since it will be more than a month before the appointments which address these particular issues will be upon us.

~Saturday Morning Brunch~

 On a sweeter note, we enjoyed a wonderful Mother's Day weekend as a family and spent much time together in thankfulness to God for such a special day.  Tom treated me to breakfast at one of our favorite spots on Saturday, and we actually spent part of Sunday at the NICU with some of her NICU mommies.

~Mother/Daughter Picture...and so begins the endeavor to get good pictures with a baby...~

Noelle actually fit into her very first newborn outfit for the occasion as the style still accommodated her small size.  All other newborn clothes are currently too big, but we have them washed and ready for this growing girl!  She weighed 5 lbs. 2 oz. today and is growing well in all areas, and we are very excited to pass the 5 lb. mark and enter into a "normal" birth weight range.  We will continue to update on her progress and so appreciate the continued prayers for our little miracle.  Honestly, today is not considered a setback.  Clinically, she is doing very well with no changes, and so this extra support is simply to keep her body from burning calories in an area which is not necessary for her to do.  I've included some pictures of her little outfit on Mother's Day, and thank you once again for praying for our sweet girl and helping us make this past weekend possible.  We are truly blessed beyond measure.

~Mother's Day Outfit~

~Captured one smile!!~

~Ballet Slipper Tights~

~A shot of my complete outfit~

Settling into Home

~Sweet, Sleeping Baby~

My heart is full this week as we have enjoyed so many sweet moments with Noelle being home.  It is an entirely different experience now that she is off her oxygen, and we have adjusted quickly to the freedom of navigating around our home without being attached to machines and monitors.  We have also had our moments of concern and adaptation as we begin to encounter issues with her that are often normal for term babies but must be monitored more closely with her due to her still small size {i.e. spitting up}.  God continues to teach us that He is in control, and we must "be anxious for nothing" and always trust Him with our precious daughter's life.  Noelle seems to be recovering well from the surgery; and thankfully, her Hirschsprungs biopsy came back negative!!!  We are so grateful to God for this outcome and truly appreciate all those who have been praying concerning this issue. 

~Eating with Grandma Wagner~

~Studying faces intently~

Grandpa and Grandma Wagner visited for a few hours on their way through town, and they soaked up some snuggle time with Noelle while we enjoyed the sweet fellowship with them. 

~Sound Asleep with Grandpa Wagner~

Monday was our busy day this week as Noelle was evaluated in our home by Child Developmental Services, and we were very encouraged at her progress.  She is testing right at her adjusted age {2 months} and even ahead in several areas.  She is behind in communication, but we have already seen changes in that over the past two days, and they expect that to improve the longer she is home and interacting with us.  The tests did not compensate for her prematurity or length of time in the NICU, so we were very pleased to see her doing so well.  After that, we bundled up and were off to the pediatrician for a post-discharge follow-up and a weight check which turned out to be a great post-surgery number at 4 lbs. 3 oz.!!  The doctor was very pleased with how she seems to be recovering, and we will continue to follow-up with our pediatrician as well as the surgeon over the next few weeks.  Thankfully, we have been able to settle into home since Monday with no further appointments scheduled until later next week.  This is the first time for us to have this many days in a row at home with no appointments, and we have been enjoying the time to settle into a new routine and allow Noelle to truly feel at home in her own surroundings.  Each day reveals new progress with her as she realizes that she is receiving positive touch and patterns develop in her schedule. 

~Bundled up and ready to go~

~Yes, I'm in here somewhere!~

Our favorite thing with her began just a few days ago as she began to purposefully smile once in a while.  It is so sweet to see her little eyes crinkle with joy as she responds to our voices and antics.  She has become very watchful and intently looks into our eyes often when we are holding her or talking to her, and I am seeing just a glimpse into what lies ahead as our little daughter begins to watch every step we choose, word we speak, and action we take.  What an incredible responsibility God has given us in raising this little one for Him, and we are thankful that His grace will continue to sustain us as He molds each one of us through this process.

~Playing with Daddy~

~Studying Daddy~

~Smiling at Daddy~

~Midnight Snuggles with Mommy~

Now that we are settling into a new routine, I cannot begin to explain what it means to have her home.  I think some of my most favorite moments come in the middle of the night as I feed her and snuggle her.  While it was always comforting to call up to the NICU throughout the night, it is entirely different to simply look for myself and see how she is doing and then to pick her up and hold her close.  These were experiences I did not have for the first four months, and I'm thankful to take full advantage of them now!!

~Content, Tiny Girl~

Overall, she is a very content and happy baby and typically cries only when something is bothering her.  We are very blessed to have such a tough little fighter on our hands, and we look forward to seeing her grow and watching her personality continue to come through in the years to come.  Thank you so much for your many prayers, and we look forward to sharing how God continues to grow our sweet bundle of joy!!