BOOM!

Happy 2012!  The new year has started off with a BOOM!  That'd be a little funnier if you spent any time around the Murphy house.  JG usually flourishes his stories with a lot of sound effects, particularly, "BOOM!"--he somehow manages to make this word have two syllables with a southern accent. bu-oom! ;-)  So, on with the new year!  Although, I am holding out on taking down the Christmas tree. 

Audrey finished her string of doctor appointments.  She has been cleared for everything but water so we are gently introducing juice.  She's not quite sure what to do with a cup or a sippy cup.  It'll be a challenge...  The pediatric surgeon who met with us says that we've come about as far as we can with her NG-tube and that Audrey would be a good candidate for a g-tube, now that she's been cleared by pulmonology and cardiology.  In fact, our appointment with the cardiologist brought great news!  Her pressures and structure are normal, so Dr. Garn gave her a free-and-clear pass until October when she turns 2!  She'll continue her meds for pulmonary hypertension, but they have not increased since she first went on them in the hospital.  She's essentially "normal" in the heart department and weaning herself off the medicince as she grows.  So...g-tube...We still are waiting on the official medical clearance by cardiology because she will require a cardiac anesthesiologist.  Amazingly, this will be her first surgery despite her involved history.  And, not so surprisingly, there's a whole new emotion for Mom and Dad for this one.  The doctor says the procedure takes 20-30 minutes and it requires one night in the hospital.  She'll have a few days of pain medication and we're not sure what the practical challenges will be.  I think the biggest question is how it will affect her sleeping, since she has always slept on her tummy.  I fear a huge interruption in her sleep schedule with a lot of long nights.  I'm hoping that the absence of the NG-tube will help to reduce her reflux, too, since it won't be there to hold open that upper sphincter.  We're still unsure of when the surgery will be--maybe next week or the end of January.  Audrey is having more and more difficulty with the NG-tubes.  They are lasting only a week and changing them is absolute torture for her.  I think it's the cause of much, if not all, of her gagging and I believe it is not helping her feeding/swallowing progress.  Who would want to swallow anything when you have a tube down the back of your throat?!  Yet, she is definitely growing!  At her 15-month well-check appointment on Monday she was in the 25th percentile for weight (21.3 lbs!!) and 44th%tile for height (30.3"!!)--most significantly--that's for a 15-month old baby!  If you compare her against 12-month old babies (her "adjusted age," which she is "supposed" to be), she is in the 54th%tile for weight and 85th%tile for height!!  Dr. James said that babies who arrive early, even as early as Audrey did, typically make up all the ground that they're going to make up by about 18 months....at least size-wise, not developmentally, such as motor and communication skills.  But our little girl is "gaining" great ground in those arenas, too!  She is crawling!  She is pulling herself up on tables and cribs, etc.  She is laughing so much more than ever before.  She's added words and signs just in the past few weeks!  I captured her "scrunchy face" in one of the pictures below.  She is turning into such a ham!  She is such a happy little girl right now!  A fact that lends itself to one of my main hesitations about having the surgery right now...it seems terrible timing to upset the apple cart now that she's doing so well overall, but we do believe that she'll be so much more comfortable in the long run. 

JG is back to school.  We had his parent-teacher conference last week.  He received terrific reports.  His strongest skill seemed to be his ability to communicate his ideas, both verbally and in writing. ;-)  He says he enjoys playground, friends and bible stories the most.  He was a little reluctant to get back into the swing of school.  We managed to get farther off our bedtime schedule than ever before, so it was a little rough getting back to early nights and early mornings.  He and Daddy did a lot of fishing during vacation.  The three of us went fishing on New Years...absolutely no luck, but he was perfectly content!  He got a new bow as a late Christmas present from our friend Bill and I can hardly stand it.  He's becoming such a big boy!  And so much like Daddy...well, make that Dad...and Mom.  According to him he's too old to call us Mommy and Daddy as of last week.  I knew that change isn't all it's cracked up to be!!  :'-(  I begged and pleaded for him to still call me Mommy at home...I respected that he didn't want to in front of his friends...he has obliged me a few times, but I am afraid that train is fastly disappearing on the horizon.

Our kids are doin' us in, that's all there is to it!  I will post updates on Audrey's surgery date and results.  Please say an extra prayer for her as we all meet this new challenge together.  In the meantime, I hope you enjoy the photos!  We have some beautiful kids if I do say so myself!

JG begged to hold his sister...he's the best big brother!

this is the face that she makes when she laughs and when you say, "cheese!"

I tried to photoshop the gooby tape edges and the sweet potato stains on her forehead,

but I suppose these are simply the facts of our life right now! ;-)

our beautiful butterfly

our funny butterfly

future heartbreaker, I'm sure

  I didn't notice the carvings until after I took the photo <3

a picture worth 1000 words...2000 if he's doing the talking

needs a few more inches and a tad bit more muscle

but don't tell him I said that! ;-)

the shirt says it all, but we don't hold it against her!

We all want to leave the tree up all year! JG is all for it

& I have a special husband who truly likes Christmas!

We've always given each other an ornament every year

and each special occasion or vacation usually is

commemorated with an ornament.  This tree

represents 100's of special moments for our family.

I like the top of our tree the best...I'm not a "bling" kinda girl,

but our tree just explodes with sparkle!  Plus, I put all the

most precious ornaments toward the top.

The Best Christmas Ever

Merry Christmas to all our friends and family!  It has been a precious Christmas season this year, filled with so many moments of happiness and truly--wonderstruck awe.  It started the day after Thanksgiving, which officially is the earliest I've ever commenced decorating, but James Gerald was eager to decorate his gingerbread house, oh...pretty much since Halloween.  I'm not sure why they sell gingerbread houses so early, but it was great motivation for several weeks!  In early December, Santa sent one of his elves to live at our house.  He was dutifully named "Wiley," and provided even more motivation since, after all, he returned to the North Pole each night to talk to Santa about the goings-on at the Murphy home.  He only skipped his charge for a couple nights when Grandmom stayed in the room in which he was hiding--he didn't want to "freak her out."  I don't believe any children will be reading this, so I guess I can admit that we simply forgot to help Wiley find a new spot one evening...Grandmom came to spend the night and served as a convenient and rational explanation as to why Wiley didn't move...but then he had to stay there until Grandmom left!  I wish I would've requested an elf from Santa years ago when my friend Katy first told me about them...Wiley has added so many moments of pure childlike wonder.

A whole new generation of Murphy hunters has been confirmed.  James took Mini bird hunting a few weeks ago and despite his caring heart for animals, JG apparently was able to separate the two entities.  Genetics won out in a HUGE way.  Mini was over the moon about the entire experience...so was Daddy for that matter!

James Gerald had his Christmas party at school.  Another gingerbread house was painstakingly created, plus, the candy selection was much more fun this time!  They sang two songs and rocked out for the parents...unfortunately my camera card filled up half way through the first of two songs, so I'm going to have to get a copy of my son doing what can only be described as heavy-metal-guitar-thrashing-legs-in-the-air jumps!  Oh yeah he did.  And I have no idea where he gets that from...truly.

Audrey continues to progess.  It's amazing how many things changed in the week following my last post.  She battled a cold for about two weeks and it thankfully avoided her lungs.  She was not a happy camper and we said a lot of prayers that we could manage it successfully at home rather than necessitating a hospital stay.  Audrey has begun to crawl--she's really just at the beginning stages of crawling and not actually technically crawling.  She gets on all fours and bobs or manages this inch-worm motion on her tummy.  I know that she knows the potential for crawling and she's trying so hard to master it.  She sits, twists, gets on all fours, plops to her tummy, rolls to her back, bends to sit up and starts all over again.  She's relentless in so many of her pursuits...always has been! ;-)  She also is beginning to say her first words!  Much to my pleasure, her favorite word is "booka-booka."  I think she just likes saying it, but it is what she says for her favorite pasttime of books.  She is grabbing, pushing, pulling, and making this sound that makes everyone pay notice...sort of her version of "hey!"  Her hands are starting to move in a way that tells me she likely has a few new signs in the near future.  Just tonight she did a lot with her hands to join in "The Itsy Bitsy Spider." ;-) She accomplishes so much week to week.  Just tonight she started doing the goal that her occupational therapist set for her about a week and a half ago.  That seems to be her timeline.  She has therapy every week, but we alternate physical therapy and occupational therapy.  At each two week mark, she tends to be mastering the goals that were set a month prior, just starting to "get" the goals that were set two weeks ago, and she leaves every appointment with a new goal to add to the list. 

She has some tests on Tuesday for her GI/feeding.  She'll have a swallowing test, which will tell us what consistency of food/liquid is safe for her swallow without the risk of aspiration into her lungs.  The last one she had was in July and at that point, she hadn't had anything to eat/drink in four months.  Needless to say, we're expecting the go-ahead for something other than "honey thick."  She'll also have an "upper GI" test which will tell us at what volume her stomach might reflux.  I think it gives us additional information, but I'm just not sure what that is.  On Wednesday, we have a consultation with the pediatric surgeon for a G-tube.  Three months ago I told her GI doctor that I believed my acceptable threshold was 6 more months of the tube in order to avoid surgery.  Just recently he "guesstimated" another 6 months.  Of course, that is an educated projection based on experience, but by no means a guarantee.  Right now, Audrey only eats about 30 from actual food. Of her 825 calories total, she has a long way to go.  She's growing and gaining weight, though!  She weighed in at 20 pounds, 7 ounces last Friday!  But she's having a really hard time with the NG tube.  As much as we don't like the idea of surgery, we really believe that she'll do better without the NG tube...more progress, faster.  And the g-tube is not permanent.  That's a whole other subject, but I think it's fair to say we are going into the meeting "pro-G-tube."

The highlight of the season was our visit with Santa.  Thanks to friends Janice and Gary, we were able to have a "private session" with Santa Claus.  Every year since JG was born, they have invited us to their home on Christmas Eve for a special visit with Santa.  They invite their grandchildren as well as the neighborhood kids.  Santa brings a special "early" present for each child, we sing songs and he does magic tricks and hands out candy canes. I have to tell you, as a mom, these moments continue to make the all-time "Best Moments" list and definitely the favorite photos list!  This year, they extended to us an even more precious opportunity...since Audrey really shouldn't/can't be in a group of people at this time of year, I had set out to have Kori (Audrey's nurse) work for a few hours on Christmas Eve this year.  When Janice called and told us that Santa was confirmed for 30 minutes prior to everyone else's arrival, I didn't know what to say!  This was the best Christmas ever!  As you can imagine, JG didn't waste any time familiarizing himself to Santa this year.  Audrey on the other hand, needed a little time to inspect and observe.  Santa's glasses peeked her curiosity and we successfully redirected her attention to the little pompom at the end of his hat.  At one point, JG was on one knee chattering Santa's ear off, and Audrey was on the other knee tugging at his head/hat.  It was a priceless moment...I had tears in my eyes I was laughing so much.  I love my kids <3

Santa wrote JG a letter this year and told him that he was leaving an extra present this year (Santa usually only brings one present other than little stocking stuffers) because he knew that JG had been an extremely helpful and responsible boy this year.  In consideration of all the changes and challenges, JG's efforts were especially noteworthy.  He wrote to JG that he would overlook sneaking the peanut butter candies over the past two weeks (Wiley told on him, but to JG's credit, he didn't steal anymore after being informed that they weren't healthy peanut butter on the inside).  Santa also explained that he wasn't giving anyone in the Murphy family any rocks this year since they had all worked so hard through the changes and challenges to love each other and help each other all year long.  And...despite JG's sincere request for rocks, Santa assured him that he could find some rocks in the backyard for his turtle habitat.  I suppose Daddy was the only one who really lost out on that deal since JG had offered to buy his rocks from him for a quarter a piece. 

My family never ceases to amaze me.  We all are very grateful this holiday season for the birth of our Savior, whose life made all of these precious moments on Earth possible.  We have the most sincere thanks to all of our friends and family who have supported us this past year.  Thank you for your words of encouragement, helping hands, thoughtful gifts and earnest prayers.  Life is good, God is good, and we have so many blessings in life that make all the challenges worthwhile. 

We wish all of you a very merry Christmas and a bountiful new year!  I hope you enjoy the pictures!

 gingerbread and tigers ;-)

 our elf, Wiley

 'tis the Season for a whole new generation

 kindergarten Christmas party

 JG's masterpiece

 buddies

 bedtime

 um, at least I have fewer dishes to wash?

 pretty Christmas girl

 storytime

 peek-a-boo! little Miss camera-hog

 JG and his imagination

 look at that balance!

toothy smiles ;-)

 my golden-eyed boy

finger-lickin' good bananas

 "and that's all I'm askin' for Santa."

 "...brother on the the other hand has a long list..."

 "...see here, I don't need them for Christmas..."

 Christmas Eve family ornament suspense

 Christmas morning reindeer slippers

 MERRY CHRISTMAS!

Love for My Fans

Another scrapbook by Smilebox

Above is a link to a Smilebox journal that I created as a thank you to everyone who supported Audrey over the past year.  Before I get started, I just wanted to give everyone some directions for optimizing the Smilebox experience.  First, pause the show right after you start it.  This will allow you to scroll through the pages at your own pace; otherwise, the pages flip too quickly.  Also, you can click on each picture to view it up-close.  I apologize for some of the tiny font-it was a formatted layout for which I couldn't do much other than add pictures!  I hope my photo selection illustrates the growth, both physical and emotional, over the past year.  Enjoy!!

We have so many thank you's to convey to so many people for the encouragement they gave us, the gifts they shared, the prayers they lifted and the helping hands they extended.  I cannot believe that a year has passed!  Audrey simply is BLOOMING! 

Her personality is incredible!  She makes us so happy every day!  Plus, she's funny! Quite the character!  I guess I shouldn't be surprised to say that she is chattering and working on lots of sounds.  She's not using any sounds/words consistently, but there are a few that she seems to use intentionally on occasion—suspiciously, she seems to be getting really good at saying "mom" and "up."  She absolutely ADORES her boys--Daddy and brother--and she always has big smiles for grandmas and grandpas.  Her nurse Kori holds a special place in all of our hearts and Audrey loves her Kori so very much.  She has a splishy-splashy blast each night in the bath tub and more water ends up out of the tub than in the tub.  Her red octopus bath toy used to be her favorite; now she likes her orange fish-fish the best…yet I suspect that froggie is vying for the top spot.  Audrey is eating food...not much, but we continue to give her a little bit each day just to keep the sensation familiar.  She has imposed a veggie-ban in her diet, much to my dismay.  For those of you who know me, you know how hard that is for me!  Actually, she will eat carrots as well as sweet potatoes mixed with applesauce...I guess that counts?  I suppose it’s really a ban on anything green :-(  Audrey likes her baby TV and she eagerly welcomes the white V-I-Z-I-O letters that don the TV screen upon powering-up.  Her personalities and preferences have emerged with a force as great as you could imagine given her history.  Her absolute favorite pastime is reading books—she loves books.  We read a dozen books a day.  It brings me such joy to see her intently look at each picture and each character and turn the pages by herself.  She may be a bookworm someday, but I also wouldn’t be surprised if my little girl who spent her first months in near complete isolation ends up cherishing the beauty of the outdoors.  She loves to sit outside.  Most of the time, she only is able to sit near the open door, but when the temperature permits, we sometimes pull the length of her tubes all the way outside and soak up the sunshine.  Words cannot describe the beauty in her lifting her sweet face toward the sun as she smiles and closes her eyes to enjoy the moment. 

Her giggles are the BEST.  Sometimes, she giggles for no apparent reason—it’s such a treat to guess what she must be thinking at the time.  Most of the time her giggles are aimed at her brother—who is our resident expert in making Audrey happy.  It doesn’t matter what he’s doing—he has reduced her to giggles by tossing a pumpkin in the air, springing “BOO!” from behind corners, and dancing, shaking and singing (simultaneously).  Nothing he does makes sense.  Nothing he does is prepared.  But he genuinely loves to make her happy and her response to him always is heartwarming.  She also is fascinated by bubbles—soapy bubbles and bubblegum bubbles.  She becomes wiggly and giggly as she extends her little pointer finger to pop them!

I believe I have another “silky” baby…hers is pink and she already clings to her “silky” blanky waaaay more than brother ever did, which is saying something!  (I should probably purchase a few back-ups?) 

Audrey still requires oxygen and although we don’t have any objective measures of her lung tissue and lung function, her pulmonologist says that the best indication of progress is that she is growing and her oxygen saturation levels remain high.  Also, she is slowly but slowly—and a bit surely—coming down on her oxygen levels.  He said one of the worst mistakes that we can make is to wean her oxygen too quickly.  As far as her prognosis—we still don’t really know what to expect.  In fact, at our last visit, Dr. Woodward apologized for taking a while to come in to the room with us due to the fact that he’d taken time to show his two medical residents her lung scans.  In his words, he wanted to give them the opportunity to view the scan because “as you well know by now, we just don’t get the chance to see something like that.” 

Her greatest risk for her respiratory health is the flu season and RSV season that is in effect.  We don’t take Audrey outside the house for anything more than a doctor’s appointment, and even then we try and limit those.  James Gerald has accepted a routine of changing clothes as soon as he gets home.  Washing hands is a must.  Depending on where we’ve ventured in our day, sometimes coming in the door means going straight to the shower.  He’s really good about it because he cares about his sister so much.  It may sound extreme but the flu and RSV really are life-threatening to her.  Her doctors agree that much of progress is due to progress as much as it’s due to a lack of regression due to illness.  By the grace of God Audrey has stayed well!

She still has a feeding tube.  I imagine that we’ll talk more decidedly about a g-tube (a tube that goes directly into her stomach through her side).  I just don’t know how we’ll get away from it, I really don’t.  But I think we are increasingly accepting of the idea.  The nasal-gastric tube is just awful.  Imagine having a spaghetti noodle down the back of your throat all of the time!  She started condensed feedings during the day about a month ago; she still receives a continuous drip of feeds at night.  She’s been doing “OK” with the change, but her tummy still has difficulty with the increased volumes.  She spits up 1 or 2 or 3 times a day, which might mean that the doctor will suggest the fundoplication procedure in addition to the g-tube, which basically wraps the stomach around itself at the top in order to prevent reflux.  She’s not drinking from a bottle.  She really has lost the “sucking” behavior—not to mention that she’s been cleared only for “honey-thick” consistency, which would be quite difficult to suck through a tiny hole!  Her solid foods are limited to about 8-10 different flavors, but even on a good day she doesn’t eat more than half a jar of baby food. We’ll see.

Audrey is sitting up by herself and she likes to stand up, too.  She actually doesn’t need too much support.  She can hold herself up with your fingers, or the side of the crib, but she does like standing up against the back of the couch and looking outside the best!  She’s still not rolling over and although it may seem a moot point by now, she really does need to work on the reaching and rotating that is required in the move.  She seems to be meeting all her developmental goals with time.  Time seems to be the common theme for Audrey according to her doctors and therapists.  It truly is encouraging to read updates and reports from the month prior—it seems like things that she wasn’t doing at the time are no longer deficits for her.  She has shown us so much growth!   

We have such a special bond with our little girl.  She captures our hearts and amazes us with her resilience and strength.  She continues to be a little miracle!

Thank you so much to everyone!  I hope that you have enjoyed this long overdue update.  I am happy to report that life seems to be achieving a state of normalcy.  Not that our lives could ever truly be considered “normal,” but there is much more peace and routine! ;-)  Our lives have been irrevocably changed and we are so very blessed to have so many wonderful people whose hearts have been touched by our little girl. 

Blessings

"Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths."  Proverbs 3:5-6 NIV

"Finally brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.  Philippians 4:8 NIV

I've been accused a time or two of being a Pollyanna.  Some have worried that I just "don't deal" with the uglies in life--afraid that some inevitable and explosive emotional breakdown surely must be around the corner for all that I seemingly am avoiding. Some have complimented me for being much stronger than I really am.  Truthfully, like most other average, mostly-mentally-sane, simple individuals--it's a little bit of each.  I probably am a "glass half full," "silver-lining," "make lemonade" kinda gal.  There are days when I am keenly aware of all the beauty in the world and just refuse to see the world in any other way.  There are days when I just can't muster the spirit to address the things that I should and instead spend the entire day avoiding taking the first step.  But most days, I take the good with the bad and try to remember to thank God for the whole lot.  And I think the average, mostly-mentally-sane, simple individual can carve out a relatively happy existence with their life-guage on "medium."  But that's not our world: no one is perfect, life is messy, responsibilities are complicated...not to mention there is a warfare for our souls all around us.  So we have to trust that God guides our path through the good and the bad and that He sometimes uses both to help us grow.

Several weeks ago, one of our associate pastors spoke about how life does not happen according to our plan.  I had spent the previous seven months learning that lesson, so I laughed aloud a few times during the service in a "don't I know it!" kinda way only because I think I can appreciate the sentiment at this point in my life--but I certainly didn't at one time.  The verses that I shared at the beginning are two that helped me very much throughout the worst moments with Audrey.  It's not our plan; it's His, and we must trust that He knows what we NEED.  And every time I thought it couldn't possibly get worse--I saw something that showed me otherwise.  Blessings--they come in all different forms, and they are abundant, if only we open our hearts and eyes.  So, I hope either one of these verses can help your heart if you find yourself in the one of life's not-so-cheery moments.  Also, there is a song that absolutely touched my heart.  Audrey had already been transferred to Phoenix Children's Hospital--which was a very stressful transition--and I was pulling into Walmart...at the moment, I was burdened by how frustrating this transition had become--how things had been going so well, with so much hope, only to be upturned so abruptly.  It seemed like my grief and fear had sparked like wildfire, all anew.  It was a new set of scary, a new set of "what-if's," and we weren't with the medical team who had seen us through so many challenges.  It was a new team, a new teacher, and we were the new kids on the block.  Nothing seemed familiar or safe. I remember turning on the radio to stop the momentum of miserable thoughts running through my head.  I only caught the last half of the song, but I remember sitting there on my smarter-than-me phone, typing in as many of the lyrics that I could remember.  I NEEDED to hear this entire song, because I know that it was meant for me in that moment.  I hope that you all take a few minutes to follow this link.  It is a beautiful song and a beautiful message.  It may seem an impossible concept to hold in your heart when life seems only to be pear-shaped, but what if...WHAT IF!  The name of the song is "Blessings," by Laura Story.  You’ll just have to listen!  http://www.youtube.com/watch?v=1CSVqHcdhXQ

We had a disappointing week with Audrey's doctor appointments.  I was so hoping that our appointment with her GI doctor would bring good news.  Instead, I fear we're at the precipice of yet another impossible decision.  Point #1, however, I should forewarn you is that we don’t know quite yet what our options are, so there’s a good chance that all of my stomach churning is unnecessary.  But moms and dads don’t work that way, do we?  So I'm going to write about it anyway!  hmph. Point #2, a doctor’s notion of timing and “quickly” is not the same as ours, wouldn’t you agree?  I honestly went into that appointment with the expectation that we were within a defined time-frame to lose the feeding tube.  A month?  Two months? 3?  Instead, her doctor wants to err on the side of caution, in consideration of her lungs, and either continue the NJ tube for an indefinite length of time or have Audrey undergo a surgery to place a G-tube—a tube that is inserted into her stomach for enteral feedings, as well as a procedure called a “fundoplication,” which surgically creates a “band” around the top of her stomach to eliminate reflux.  Currently, she spits up.  Because her feeding tube goes into her intestines, there isn’t much to spit up—saliva, mucous, bile…poor little girl!  To complicate that, the NJ tube keeps both of the sphincters—one at the top of the stomach and one at the bottom—open.  It’s not like they are held “wide open,” but they aren’t permitted to close entirely.  James and I have believed for some time that the NJ tube is the primary cause of this spitting up.  Any time there’s a force imparted on her—whether it’s her respiratory treatments, or pushing her meds through the tube, or changing positions—it’s our belief that the presence of this tube in the back of her throat is the primary cause of her gagging.  The doctor says that if she is refluxing now, she’ll reflux when she has something in her stomach, and it’s too great a risk for her lungs.  We personally don’t believe that she is aspirating—for as much as she spits up, it seems like her lung status would be compromised rather than progressing.  But the swallow study isn't for another month!  And we have nothing to go on other than our “guts.”  “Parental instinct…”  But it’s really hard to press the doctor when he is erring on the side of caution in respect to your child’s greatest weakness.  What are we supposed to say?  "No, go ahead and risk it...we give you permission."  ??!!  We still don’t know if the Pulmonologist is going to give her the “go-ahead.”  When we first transferred to PCH, it was on the premise that these procedures may happen.  However, her pulmonologist told us almost immediately that she was not a candidate for any type of surgical procedure that required ventilation.  Her lungs, on top of prematurity and lung disease, were further compromised and damaged by the very ventilator that kept her alive.  Two months on a ventilator is a LONG time.  So, I’m just not sure what her lung status will allow.  My inclination is to hope that her pulmonologist says, “no way, no how.”  But I also acknowledge that I don’t know much about the procedure that is being recommended and I'm just plain scared.  It’s not that I have a problem with her having a g-tube; I just don’t want her to have to undergo the surgery.  I don’t want her to have to go back on the ventilator.  I don’t want her to go under anesthesia.  We’re talking about a baby who has never followed what doctors know to be “typical!”  If it were as easy as getting your ears pierced—I wouldn’t mind her having a button on her tummy that houses a tube into her stomach.  I’m OK with making clothing selections that are based on being able to fit over a feeding bag.  I’m OK with the extra care that will be required to care for the site on her tummy.  I'm OK with all the day-to-day considerations that a G-tube entails.  But that’s not at all what we’re talking about.  We’re talking about a baby whose lung status is precarious at best, and even though I can’t imagine the pulmonologist giving her the go-ahead, if he did, I can’t believe that her lungs have progressed that much to be well within the “safe” zone.  In other words, if she’s in the “safe zone,” it seems like she would just barely be in the safe zone—too close for comfort for a mom.  And, yes, I know no doctor is going to proceed in contradiction to the risks, so again, this mental anguish is probably just wasted effort…but it’s just another reminder that none of this is my plan, all of it is complicated and we just have to have faith. 

Apart from this latest medical fork-in-the-road, Audrey is doing well!  I think the best new things about her are that her hair is growing—she has enough to clip a bow!—and she is laughing a LOT (for her, that is, as she’s still a pretty serious sort!), especially at her brother’s antics.  And she is growing!  The doctor was very encouraging about her growth and response to nutrition.  This has never seemed to be an issue for her, despite her teeny-tiny start! ;-) She weighed 16 pounds, 10 ounces last week!  She has gained 15 pounds since she was born!  And she's officially "on the charts" at her chronological age!  At least for weight...length and head size are another measurement.  Plus, when you compare her to babies at her "adjusted" age--she's really on the charts!  Also, we’re down another medicine!  From the original 12 medicines, we’re down to just 6, and two of those are her respiratory inhalers.  James and I believe that she’s doing better in the past two week, simply as a result from cutting out 5 medicines during this time. 

Thanks again for your prayers and love for Audrey!  The Murphy Family is blessed!

What's Normal Anyway?

I tend to have a full brain on an average day. It's fair to say that my brain has been on overload for about, oh, 8 months? As I sit here pondering what to write about, I cannot deny that there is laughing coming from somewhere inside my own mind!  Who am I kidding?  There are about 100 topics that I could write about in a fashion similar to babbling...what is it called when you type endless babble?  My intention is to provide regular updates about the Murphy family--particularly our little Audrey, who has captured the hearts of many around the world; however, something tells me that this "blog thing" will be therapeutic!  So, as I think about what to write, I take in my surroundings.  Here is the on-the-spot Murphy update: JG is playing Wii fishing--catching the "Big One" (wow, he is so much like his dad!). Audrey is in her swing, persisting to rub her tape off her face as she typically does when she gets sleepy.  So, in between his fish-on-the-line inspired "oh yeahs," JG is telling me, "Mommy, Audrey is pulling her tape off!" ("Thanks buddy")  JPM is sleeping in on a Saturday morning...for which he's entitled after his week.  Plus, he's going to be on Audrey-duty all afternoon while we're at a birthday party.  I'm thinking about making pancakes for breakfast as a special treat for my son, eggs for the protein-focused adults and strawberries--so we can eat them before they spoil.  Pause....And now, 30 minutes later, Audrey has completed her gagging spell that usually happens after her respiratory treatments, we've logged a tummy-time session, the three of us snuggled to watch a baby cartoon, and she's down for a nap.  JG sat with us, baby-talked to his sister so lovingly...they held hands while we sat in the recliner.  It was a pinnacle moment of sweetness for any Mom.  He kissed her atop her head before I put her in her crib.  And then he was off to search the house for a "treasure" to give his friend at his birthday party later today. Apparently, the yet-to-be-purchased Batman something-or-other that we hope to find at Target on our way to the party is not sufficient.  My son wants to give something more meaningful...in addition to the Batman toy, of course, but more personal, nonetheless.  Another pinnacle moment: my son is a very thoughtful little boy.  Murphy is still sleeping.  The medicine alarm is going off.  The feeding pump alarm is going off.  How I managed to get her down for a nap and not notice the time is beyond me.  I've sent JG on a search for some wrapping paper, and in between typing words, I am verbally instructing him how to wrap a present for the first time by himself.  Gasp...he's using the big scissors.   The end product: seashells that he collected in Florida wrapped not-so-neatly in a tissue box.  I love him so!  He's already picked out his clothes to wear for the day: ASU football pants and an ASU t-shirt.  HUGE surprise. (not really) Oh well.  I'll remind him later that his pants have a hole in a not-so great spot.  I don't want to interrupt his attempt to create static electricity in his hair as he rubs his head on my couch cushions.  Oh, I'm really not certain he's a normal kid.  All these alarms are not normal.  Sleeping in on a Saturday definitely is no longer normal.  And then it hits me: this may be as close to normal as we'll ever get.  And if that's the case, I will consider it a blessing.  Which explains the ironic chuckling in the back of my head...

The other day, as I was leaving the house to go into the office, JG displayed a heart-wrenching tantrum.  Tears, sitting on the floor, howling about how many days it will take me to return.  And then, in his desperation, he tried to play an old card from a killer hand: "I just want everything to be normal!"  See, about 4 months ago, he said this for the very first time and it absolutely crushed me.  And who could blame him?  I felt that way, too!  That phrase brought this Mom to her knees.  Since then, we've talked about it, exhausted the subject and moved on.  Yet he obviously remembered the power that this phrase yeilded, so I guess he thought he'd go for broke.  It didn't work.  The truth is buddy, this IS normal.  So let's go over it again.  Remember?  We have a NEW normal...do we really want our old normal anyway?  Afterall, our old normal didn't have Audrey in it.  Our old normal had us running around a lot more.  How do you explain to a 5 year old that our old normal had less purpose?  How do you explain to a 5 year old (and his parents) that being tied to home isn't a bad thing?  I'm certain the next several years will require a few sacrifices and accommodations, but it's made us slow down and focus on what can be enjoyed a little closer to home than "normal."  And then he asks, "but when will we get to go to Hawaii again?"  Ironically, this was the last thing, in his mind, that we did before our life became "not normal."  Hawaii...normal...ha, I wish. 

So, I'm off to make some pancakes...a fairly normal thing for a Saturday morning wouldn't you agree?

A look back at "Normal in Paradise"

9/23/10

Kailua State Park Beach near the house

9/23/10

JG @ wedding*

*all weddings should have a beach for kids to run

Daddy & JG

Mommy (& Audrey) & JG

9/25/10

Air Show @ Marine Corps Base

9/26/10

Daddy & JG playing football

Murphy Family, est. 1998

Happy #12 Anniversary!

(4 days before the beginning of a new normal!)

Small But Mighty Murphy

Hello All!

This blog was created for Audrey's "Fan Club," who has followed her progress from her remarkable introduction to this world.  I have officially reached the maximum photo allowance on her CarePages, which is her hospital blog, and I know everyone is eager to see what a 16 pound 7 ounce Audrey looks like!  But first, I want to tell everyone about the page itself.  Throughout this entire experience, I've spent a lot of time on my knees, praying that our baby girl could remain with us.  There were many, many, many days when I felt as if I couldn't possibly meet the day...fallen, broken, afraid.  Yet, somehow, every day, God gave me the strength to meet the challenge.  I titled my blog "My Hope and Stay" because of a song that seemed to always play at the most inspired moments.  The song is by Chris Tomlin and the verse that meant so much to me is:

So teach my song to rise to You
When temptation comes my way
And when I cannot stand I'll fall on You
Jesus You're my hope and stay

It's been awhile since I've posted anything...been a little busy around here! ;-)  I just want to start out by saying thank you, again, for all of your prayers and wishes for our Audrey.  She is thriving; she continues to bloom!  The Murphy family truly is blessed.

There have been so many changes since my last CarePages post.  Audrey has been home just over two months now.  She is happy, healthy and growing.  She laughs and smiles.  She jabbers and coos. She watches and observes.  She loves looking at her brother...she loves being held.  She sleeps a LOT, but we know she has a lot of healing to do.  And she works so hard...we're so proud of her!  When she's awake, she loves to play in her jungle gym, rock in her swing and look at herself in the mirror. I don't blame her--I spend countless long moments, staring at her, marveling in the miracle that she is!  She is a very serious sort.  We have to work hard for her smiles!  Zooming through the air and zerberts seem to do the trick! She is particularly fond of the plastic parrot on her "Baby Einstein Exersaucer"--she tells it lots of stories.  She may possibly be a future Olympic swimmer--backstroke, as she especially loves kicking in her bathtub.  All seriousness is abandoned when the splashing commences!  She is sleeping through the night, for the most part.  She's a bit of a chuckle-head, making squeaks and peeps all night long.  Over the past 3-4 weeks, we began nursing 4 nights a week which gives us some rest.  I've figured out a way to put her formula on ice--literally--so that I don't have to wake up every few hours to refill her feeding pump. I've ventured out, just the two of us, three times--doctor, ER & Walgreens.  I'm eager for the day when our destinations include the park, bookstore and ice cream!  She has such a fabulous disposition.  Very serious, very observant.  It's almost as if she's making up for having a very dull visual environment for the first five months of her life.  Baby TV is like eye candy for her! :-) Her greatest gripe is the tape on her face.  Neither one of us enjoys that very much...I have to find my "Mommy of Steel" place within...she cries, gives me "the look," and generally let's me know just how much she hates it.

Her doctors are pleased with her progress.  We're just starting therapies such as occupational, physical and feeding therapies.  It's actually been a nice opportunity to go back to Cardon's Children's Hospital and sneak in a visit with the doctors and nurses and staff who became such a crucial part of our lives while Audrey was there.  Audrey is greeted like a celebrity--everyone coming out into the hall to say hello.  We feel sincerely welcomed; I know many parents have difficulty returning to that setting, but it's such an emotional "home" in a weird sort of way for me.  These are the people who helped our baby girl and gave her a chance!  During our last visit, Dr. Waterkotte commented about how Audrey is "our miracle," and how she's such a "shot in the arm" for the entire staff--showing them what they work toward each day.  As a parent, I couldn't be more grateful or in awe of that team and it means the world to me that they hold Audrey in their hearts in the way that they do. 

I guess the plan is to continue services there until we can find therapists to come to our house.  She works so hard at her therapy appointments, and each time she does something that I didn't realize she could do!  She seems to be just-about on track for her adjusted age--that's how old she's "supposed" to be.  I still can't believe that she's 8 months old!  But the goal is to work toward lessening the gap between her "adjusted age" and her "chronological age."  Probably the biggest obstacle in the near future is to get rid of her feeding tube....her GI doctor says that we can discuss the topic at our appointment on the 22nd.  Yay!  I've given her "tastes" of apples, carrots, peaches and grapes.  This involves rubbing these on her lips and allowing her to lick them just for the taste, as she's not allowed to take anything by mouth.  Her faces are precious!  Her favorite, by far, was the peach.  :-)  We went to the pulmonologist yesterday; Dr. Woodward still cannot give us a definite timeline for things like Audrey no longer needing to be on oxygen, but he makes us optimistic about Audrey just needing time.  I feel confident that we're past considerations like tracheostomies and g-tubes.  I don't know that she'll be an Olympic sprinter ;-) but her budding personality and proven determination will serve her well!  The little battles won certainly are momentous!  We have cut out 3 of her 12 medicines, and are working on a 4th from that list.  If she responds well to its absence, we actually get to cut out a 5th medicine which she takes to counteract the side effects of #4!?!   It is humbling how much this little girl endures!  I wrote the "experts" about a month ago regarding the results of the genetic testing.  I don't completely understand the implications of their response, but I think, all in all, that their opinion is good news and supports the concept of "just needing time."  It's easy to get caught up in the unknown.   I find myself thinking things like, "when she gets to this milestone, I'll feel better" or "once she starts doing 'X' I won't worry as much."  I often have to remind myself simply to enjoy the everyday moments with her. And then when I think about how fast five years with James Gerald has flown by...I quickly start to focus on as much smooching and squishing those cheeks as I can! :)

For now, I'll just end with a message to all to never lose faith in God's plan for you...it's not always your own, that's for sure, but always trust that He knows what you need.  Here are some pictures to recap just how precious our moments are and how abundant and miraculous life can be.  I hope you enjoy the pictures.

Taken on my BIRTHDAY 10/6/10

Just to remind you how teeny tiny I was.

Taken 11/18/10 @ 7 weeks

Holding hands with my bear.

Taken 6/10/11

Now look at us! I'm so much bigger than my bear!

Taken 3/11/11

Pizza Day!

Can you tell by my look that I'm not sure about going home?

Taken 4/23/11

In my Easter basket with my bunny



 Taken 4/23/11

In my beautiful Easter dress with Best Brother

 Taken 6/9/11

So beautiful.

Taken 6/9/11

Me & my chins...all clean after bath

Taken 6/10/11

Tummy-time with my favorite pop-up toy.