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!