My Hope and Stay: June 2011

Monday, June 27, 2011

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!

Saturday, June 11, 2011

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!)

Thursday, June 9, 2011

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.