PICU Days 1 & 2 in Photos with Update

~Settling into our PICU room late Monday evening~

~A very big bed for a very little person~

~Trying to get comfortable~

~Not too sure about all this!!~

~Nice, large room {we can stay with her at all times!!}~

~Finally being allowed to eat again this morning~

~Just finished the last bottle for today & starting to act more like herself~

Noelle had an encouraging day overall today, and they have already been able to take some great strides medically.  They turned off her nitric oxide and transferred her to the oral drug, and she seems to be tolerating it well so far.  They have also been able to wean her oxygen today, although she is still on a high flow rate and still has some distance to go before transferring back to the lower rate cannula she was using at home.  The medical team is hopeful that she will be able to transfer out of the PICU tomorrow into the step down cardiac unit, where they will continue to monitor her heart as she adjusts to the new medications before coming home.  We still do not yet know what we are facing long term, but no one seems to know at this point; and we will just have to wait and see how her body continues to respond to the current treatment.   We will update again tomorrow, hopefully with some good news of progress.  As always, thank you for your love and support and most of all, your prayers.

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.

Six Months Old

~Yeah for 6 months old!!~

The days pass so quickly these days as we settle into life at home and attempt to develop a consistent routine with our little girl.  You would think that after two months, we might have this down by now; but I think {I hope!} every new set of parents goes through this during that first year with a new baby.  The adjustments have been compounded with the barrage of appointments those first several weeks; but with that part starting to wane, life is seemingly more calm these days, and Noelle especially seems to like the predictability of her days.  She actually seems to be turning into quite the little homebody!  While I have attempted to keep various noises going throughout the day and night so that she does not become accustomed to pure silence, there is no getting around the fact that our home is a fairly peaceful environment.  Music, cooking shows, talking, fans, the washing machine and dryer, and even the vacuum do not make up for the alarms, multitude of voices, various machines and other babies' cries which she heard in the NICU at any given moment {often, all at the same time!}; and now that she has had consecutive days of being at home, she really seems to like and prefer her own space.  That is not to say that she still does not do well when we are out with her.  She still does quite well as long as we are not in places which are overstimulating for her {preemies overstimulate extremely easily, even months after discharge from the NICU}, and so we are slowly and carefully venturing out into uncrowded places so that we can not only accomplish a few things but so that she can also begin to slowly build her own immunities.

Noelle turned 6 months old this past week and weighed 5lbs. 11oz. as of Sunday.  I felt a small twinge of disappointment when I saw the number on the scale as I was hoping she might reach 6lbs by her six month birthday and thus average a pound a month.  However, she is very close and has had good, consistent and proportional growth, so I truly cannot complain.  It does mean that we will probably not be making Father's Day our first Sunday at church but just knowing that she will be home with us for Father's Day is gift enough.  This little girl becomes more and more precious to us each day, and we are loving every minute of watching her grow and change.  The pictures that follow will better {and more interestingly} show the changes in this sweet little miracle God has given to us.  Her expressions are priceless!!  As always, we continue to appreciate your fervent prayers for this blessing of which God has allowed us to be stewards.

 Bath time is still the most exciting part of the day...

~Goofy Tongue Grin~

~Really?  You want ANOTHER smile?~

~Well, okay!!~

~You can have as many as you like!~

~Bath time is the best!~

~Perspective~

~Sparkling Eyes~

~Bath time brings out the talker in me!~

 These pictures were taken on her official 6 month birthday...

~I LOVE my frog!!~

~I found my hands....they absolutely fascinate me!!~

~I can't figure out why he doesn't talk back....~

 We always love visiting Gigi and G'Pa....

~Snuggling with Gigi and showing off my pants from Aunt Barbie~

~I love G'pa's noises~

~Visiting with G'pa~

~Talking all about my day~

~Oh but wait...Daddy has the camera???!!~

~...I must say hello...~

~...and flash a cheesy grin!!~

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~

~ Five Months Old ~

~First family outing: a walk outside~

Some days I wonder where the time has gone these past months; other days, it seems that we have been in the midst of this journey for as long as I can remember.  Long or short, either type of day is still a good day and one for which we are very grateful to God.

~Cozy and warm in the stroller~

~Tuckered out from a long day of appointments~

~Ready for our walk~

Noelle is continually changing before our eyes, and we become easily excited at every little sign of growth that we see.

While life is still quite hectic as we have multiple doctor appointments to attend {5 this week alone!}, we are starting to see things settle down and are beginning to figure out life as a family of three.  Our precious bundle continues to adapt well at home in her own space, and she is beginning to communicate more and more each day with smiles and tiny noises.

~Checking out new toys~

~Helping Daddy work on the computer~

~Very focused..~

She weighed 4 lbs. 9 oz. last Thursday, and we are looking forward to seeing how much more weight she has gained at her appointment tomorrow.

She still is not close to fitting into newborn clothes, but she is filling out her preemie clothes more and more each day, and we cannot wait for the day when she completely outgrows them, and we can pack them away to be used for her doll clothes when she is older.

~Relaxing with Daddy~

~Sweet snuggles~

At the end of this post, I have included some extra photos of Noelle from her bath tonight in which she was all smiles, so I hope you enjoy them almost as much as we do!!

~Reading a bedtime story with Mommy~

As always, thank you for your continued prayers, and we look forward to reporting having reached the 5 lb. mark very soon!!

~Tiny but growing!!!~

~Sweet, Happy Girl~

~My face is starting to fill out!!~

~I like to smile with my eyes!!~

~...and I'll wave at you too!!~