Thursday, February 19, 2009

The Mighty Madeline

. . . We last left our premie superheroine ready to pit her intestinal strength against the ultimate baby food: Mama Milk.

Having conquered penguin food in record time, the Mighty Madeline Quinn convinced her keepers that she was prepared for this arduous undertaking.

Alas, neither her ambition, nor her appetite, proved prepared to handle the formidable and menacing Mother's Milk.

The Mighty Madeline Quinn's pace was slowed not only by the weight of drenched diapers, but also the ghastly gas that crippled her from leaping out of her crib and seizing the world at large. . . (or at least that coveted stash of pacifiers).

And so, our dear superheroine has been reduced to being fed penguin food -- yet again.

While she succumbs to the distasteful pre-digested food, the Mighty Madeline Quinn refuses to surrender her ability to ripen in her own way. Tonight, she proved she's striving to be a heavy-hitter as she weighed in at a full 5 lbs!

It is a night of discrete excitement as so much more is to come when (days from now) she again tries to prevail over the ever-potent breastmilk.

Stay tuned for the next episode from the adventures and triumphs of the Mighty Madeline Quinn . . .

Tuesday, February 17, 2009

A Separate Reality

Having gone for nearly four weeks without much sunlight, I have been thoroughly enveloped into the shadowy folds of the NICU. Sadly, Quinn knows no other reality.

When I spin stories for her about the dog back in California waiting to lick her milk mustache, the cat who will always purr her into a good mood, or the oodles of family and friends eager to fawn over her father's likeness, Quinn's eyes betray that talk of a different home doesn't make a modicum of sense to her. And, I have to admit, I'm starting to wonder if the hospital isn't indeed our home, and this strange sense of time isn't a loop we may never escape.

Here, the day isn't over until the next one begins. . . The edges of each smudge into the other and memories collide to confuse any sense of a point in time. Oddly enough, it sounds as though Jack's days are very similar in how they blur together in his separate and Afghani reality.

A day, two, or several ago (who knows!), I splurged for some flavor of my former life at Whole Foods (better known to some as "Whole Check"). As if it were normal, I stood outside the backseat of my rental car, while ravaging (what Jack would call) the "lickies and chewies" I had bought.

A woman who approached me took her own life in her hands when she thought it worth interrupting my feast. From under her cloud of cigarette smoke, she asked if I could spot her some cash. Turns out her daughter was stuck in Provo, having gone into early labor, and was "so far from home" that by pooling money perhaps this woman could bring her daughter and grandchild back.

I wasn't sure whether to snarl because this woman got so close to my food, or to choke on the irony of her story. . . (particularly the punchline that Provo was "far" considering it's less than 50 miles from Salt Lake). Needless to say, I shooed her away from stealing my food. . . and my identity.

Although this place tends to feel isolating and removed from normalcy, it is a our home and way of life for now, and I am resigned to this fact.

Fortunately, we now get to experience the happier side of the NICU as Quinn continues to improve. Tonight, she is off the penguin food and is only digesting breastmilk. She is almost back to the weight and stage of progress she was at a week ago when everything seemed to come undone. What a difference a week can make -- in any place, and at any time.

All the best from this side of reality,
The Murphys

Monday, February 16, 2009

Reading the Tea Leaves

Since Wednesday, Quinn has been on close observation for any indications she is continuing to have trouble digesting her food. As the nurse and I crane over each new diaper to look for signs of blood or improved absorption, I feel as though we are reading the tea leaves for Quinn's digestive fortune.

The all-breastmilk plan was quickly foiled when she restarted her antics of shooting her mother with explosive diarrhea when within close range (she's just testing my reflexes and sense of humor I'm sure).

Yesterday morning I had bargained with the doctors to not reintroduce formula for another day or two until her system proved to be able to digest plain breastmilk. My hope that Quinn was over this setback and back on the mend were further dampened by her continued lethargy and the brevity of her states of alertness. I argued that if they gave her formula and it caused yet another upset (or worse, another bloody stool), then she might have an even harder time recovering.

For the moment the doctors acquiesced, but by yesterday afternoon her loose stools caused them to decide to give her nourishment through a formula that is so simplistic it's as if it were predigested (meet Quinn the penguin!).

Within six hours, that formula did it's magic and for the first time in weeks Quinn was pooping like she hadn't been marinating in salt water. (Who needs antidepressants when poop can bring infinite happiness?!)

The other spectacular thing is that along with putting her gut back on track, the penguin food also brought back Quinn's fiestiness (as she demonstrated when I put her to the breast and she immediately tried to gum me to death). So, our girl is definitely back and with a bite!

All the best from the bowels of the NICU!
J & the Penguin

Saturday, February 14, 2009

Fingers Crossed

Keep your fingers crossed -- because so far, it looks like Quinn has averted a real medical crisis.

Her gaggle of doctors and nurses are divided on the theory of what caused her bloody stool earlier this week. Some are certain the increase in her (blood) platelets is an indication her body was wrestling with a virus; others contend her explosive diarrhea started when formula was added to bulk up my breastmilk, which would suggest she has a sensitivity to it. It will take a few more days to figure out, if we can at all, what caused this blip in her progress.

Either way, Jack and I are nothing less than grateful, and pretty close to euphoric that this scare is not materializing into anything more.

For me, it feels like I awoke from two of the worst nightmares I could have in one night . . . As in a twist of fortune, the night Quinn's health seemed to come undone, Jack was suddenly out of touch. It wasn't clear why he didn't call when he emailed to say he would, but I tried through the night not to let my worries expand to that other quadrant of my little universe. Thankfully, by the next morning, both he and our girl proved to be just fine.

That I didn't totally crumble under the uncertainty of both Jack and Quinn's well-being wasn't because I found a stash of superhuman strength in some hospital cabinet, or had learned the secret behind Ronald McDonald's perma-smile . . . Rather, it was from the resounding support and compassion that every member of the hospital staff expressed to me (I think the cleaning lady even reached out to show she cared as she asked me to move the *&@! ouf of her way).

There were not many dry eyes when people stopped by Quinn's room to hold me up with a hug. Some felt they were being "unprofessional" by showing emotion for a patient in front of a parent; whereas all I saw were professionals who understood the gravity of what we as NICU parents, and all humans at some juncture, endure when all our hopes and expectations hang in the balance.

Slowly, Quinn is regaining her strength and is now back to basic feedings of breastmilk through a tube in her nose. She is showing a renewed interest in life as she squirms and roots for food shortly before a feeding, and then afterward stares endlessly at Jack's picture. Tonight, I will sleep soundly knowing she is on the mend.

Thank you all for your concern, encouragement and support. . . It certainly worked and helped keep me sane.

All the best from the snow-capped NICU,
Mama Murphy

Thursday, February 12, 2009

Strollercoaster

Whatever endorphins I built up the other day were completely burned up yesterday afternoon.

Just as the nurse and I were excitedly preparing Madeline Quinn for her first bath ever, we discovered blood in her diaper. For those of you not medically inclined, read: not good.

Trying not to let the nurse's face send me into an orbit of panic, I waited until the room was flooded with medical staff to accept the reality that things might have taken a turn for the worse with our little girl.

They immediately started drawing blood, urine, and doing a physical assessment to try and understand what could cause the blood in her stool. She is one of the tougher patients for an IV, but they eventually got one started to deliver two different kinds of antibiotics in case it was what they feared -- necrotizing entercolitis, aka "nec." Essentially, this is yet another mysterious condition that occurs with premies that if not caught early enough causes the intestines to die, which can be fatal.

Starting yesterday afternoon, Quinn started to receive a barrage of x-rays every six hours. This wasn't so bad, at least from her perspective, compared to the garden-hose of a tube they left stuck down her throat to ensure that nothing remained or collected in her stomach. The poor kid was perpetually choking on that dumb tube, while whacking her IV around, and squirming to get out of reach as the nurses attached -- and then detached -- sticky leads for every kind of monitor to every (and I mean EVERY) part of her body.

Watching helplessly from the sidelines, the scariest moments were when she wasn't being feisty or annoyed, but was lethargic and out of sorts.... Since seeing that bloody diaper, the night passed by so slowly it felt as if my own life was hemorrhaging out with every passing moment of uncertainty.

As of this morning her diagnosis has changed. According to the top radiologist, her x-rays suggest that it is not nec, but either a virus or, slightly less likely, a reaction to the formula they use to fortify breastmilk. Originally, they said she would be on IV fluids and antibiotics for 7-14 days, and in order to give her intestines a rest they would withhold food for anywhere from 7-21 days. For a kid who is hungry half an hour before her next feeding (which is every three hours), I felt especially bad for what she was about to endure.

Fortunately, if her bloodwork and x-rays continue to lack strong indications for nec, they will discontinue the IV and let her go back on breastmilk (alone) tomorrow!

I'll keep up with the latest here on her blog... In the meantime, thank you for all your support and thoughts of health!

J & the kid


Tuesday, February 10, 2009

The Face of God

Considering I can hardly recognize people I met five minutes ago, it is nothing short of miraculous that our little Quinn can recognize the sound of my voice, my blurred face, and my scent (not sure that last one is a good thing).

Initially I thought Quinn kept averting her eyes from me when I held her because I too find it painful to look at my image after only a few hours of sleep here and there. That was until the lactation specialist enlightened me to a baby's body language. While these little beings don't come with an instruction manual, and they differ in size and temperament, they apparently have the same language. Forget cracking Navajo code, whoever figured this language out deserves to have a galaxy named after them.

To my surprise and relief, it turns out Quinn doesn't find my image disagreeable at all... In fact, she is so overwhelmed when she looks in my direction and recognizes me as "Mom" that she has to look away -- as if looking at the sun. What compliment could top that?!? As impossible as it seems, she makes it irresistible for me to grow all the more twitterpated with her.

Now, if I am like the face of the sun then you can only image how she'll react when Quinn meets her Daddy... Undoubtedly, it will be like seeing the face of God. Being his female clone, she is quite literally "made in the image of" him. I can hardly wait to see her expression!

In the meantime, Quinn's face is filling in nicely as she tips the balance to 4.5 lbs!!! Even though I see her multiple times a day, I too can track how much she has changed in the last two weeks. As of the other night, she is back on oxygen, but the lowest dose via nasal cannula.

Even though I knew it was probably coming, that bump in the road was a bit of a blow to my mood yesterday. Since my new purpose in life (other than to make moo) is to be whatever role model I can, the least I can do is to show the kid how to relax and remember to breathe. So, today I am successfully working on staving off that blue feeling by indulging in nutritious meals, extra rest, and a healthy dose of endorphins (from exercise, and holding the kid of course -- remember this Utah!).

Have to go try and plump up the kid some more...
Until next time, be well!
The Murphy Tribe

Sunday, February 8, 2009

Milk This!

So, now I fully appreciate the saying about crying over "spilled milk." More than twice a nurse has had to toss out some of the breast milk I bled, sweat, and cried to make. Apparently for premies, the stuff is no good after 24-hrs unless frozen in some space-age freezer. It took all my self-control not to let my head spin, my eyes roll back, and have my tongue deliver a serious lashing when this happened for a second and third time. And if two particularly sensitive areas of my anatomy could be vocal, they wouldn't just cry, they would have a full-blown conniption. So, go head, cry over some spilled milk... Some poor cow (or Mom) worked hard to make that stuff!

Speaking of Milk Maids though, the head nurse (a real battle-axe that I fortunately have won favor with -- you won't live long if you tick this lady off) admitted that she was about to accuse me of making friends with the Milkman as Madeline Quinn's looks become more distinctly not mine, and don't look much like they would belong to someone named "Jack Murphy." When she saw Jack's picture hanging in Quinn's crib, she said it all made sense (unless of course, those are just pictures of the Milkman).

It's true. Quinn looks nothing like me. In fact, it's kind of creepy considering it looks like I gave birth to my husband, or at least his clone with a bow. No need for a paternity test here; although whether or not she inherited any of my DNA (other than her extremely efficient digestive system) is yet to be discerned.

She is eating well, although she again lost a few grams yesterday. Her room is a bit on the cool side, so I wonder if she had to burn extra calories staying warm, or just got exhausted after we burned through multiple diapers (yeah, rethinking that cotton-diaper plan considering how many loads of laundry and gallons of water they might translate into). I know I was exhausted just watching her be so productive.

It also looks like she might be put back on oxygen, at least for feedings. We've been using "blow by" oxygen, which just means having some flowing nearby but not actually through a nasal cannula. That's worked quite well, except for tonight when even with oxygen next to her face her saturation levels dipped quite low.

In any case, it isn't much of set-back, if one at all... Quinn is otherwise very stable and quite content spending most of her time sleeping (and growing!).

Hope each of you had a relaxing and enjoyable weekend.

All the best from Utah!
Mama Murph

Friday, February 6, 2009

Groundhog's Day

Feels fitting that this past Monday was Groundhog's Day because that's truly how every day passes at the NICU. There is some sort of weird time vortex that must occur somewhere between the parking lot and the scrub-in sink because even though it feels like I've been here for more than two weeks, it seems like the clock just spins away and yet I have little to show for all those hours.

The other night though, two other NICU moms and I stepped out of the routine and went out to celebrate one's birthday over dinner. Rather than getting all dolled up, we each raced to our respective corners to pump breast milk (what I like to call "make moo") so as to reset the clock on how much time we would have out (about 1.5 hrs). How life has changed in oh so little time.

Initially, we each felt a little guilty and reluctant to leave the hospital when we could all be hanging over our kids (as if staring at them did any good). Then it occurred to me that this is the only time we can afford to have professional nurses, with all the cutting-edge equipment, essentially babysit our kids. If any time, this is our chance to take a nap, go out for dinner, or type mindless stuff on a blog. So, we went without guilt and stayed out well beyond our (pumping) curfew... and as predicted, all of our kids were safely tucked in their beds when we returned.

During dinner I did have one stroke of genius... or so I like to think. We were discussing how to keep our sanity, or our spouse's, while getting up multiple times in the night to feed our babies when we go home. It sounds like a lot of parents sleep in separate rooms so that at least one person stays coherent while the other one slips into the irrational realm being so sleep deprived. (Not sure what that says that Jack might get more rest in a combat zone than at home...)

But, here's my contribution to society: why not create a human version of hampster food dispensers?!? If anything, it has to be less problematic and tempermental than Mom's body... and the kid could go ahead and take out all her aggression by gnawing the thing to shreds without anyone getting marred in the process. Brilliant, I know.

In other news though, Madeline Quinn is poking right along. She regained the weight she lost the other day, and is maintaining her body temperature. My reflexes are adjusting to her sense of humor as I almost got out of the line of fire in time yesterday while changing her diaper.

Yeah, and I know I wasn't specific before, didn't want to gross anyone out, but let's just summarize by saying we're talking about the fragrant stuff that she is aiming and shooting. My idea of getting back at my parents was to hurl all over the place, on command. Hopefully, Quinn isn't perfecting her own version of this!

Thank you again to everyone for all your support, emails, phone calls, and prayers. It's definitely helping!
Mini Murph Mama

Thursday, February 5, 2009

Don't Make Me Angry...

My sister just flew out for a visit over the weekend, and while here she reminded me of what a difficult kid I was (I like to add the caveat: at times)...

Even though people love to blame t.v. for their child's behavior, I don't think I can get away with claiming that my favorite show (the Incredible Hulk) taught me that there was no return once you "made me angry!"

Thankfully, Quinn appears to be nothing like me in this respect. This little girl has tubes up her nose, down her throat, monitors stuck to her chest and feet, people fussing with her multiple times a day, and yet she almost never cries. She is just the happiest baby, easiest to appease, and if angered - quick to forgive.

Our Mini Murphy seems to save her largest protest for when I'm changing her diaper. Today, she made a real statement by getting not just me and everything in her bed, but the wall at the end of the room too. (Really hoping this won't be a lifelong habit.)

Other than that, Quinn continues to do well. Although she lost a bit of weight, it wasn't enough to cause concern because overall her body is still adjusting to have to regulate its own temperature in an open crib. The only unfortunate change is that she is now regularly having "A's" and "B's," which are spells of apnea and bradycardia (a slowing of her heart rate).

This too almost appears to be a form of expression as she seems to have them as I'm preparing to leave the hospital... ("mean mommy!")

So, in addition to learning how to breathe, maintain her body heat, and digest on her own, Quinn also seems to be mastering how to tug on my heartstrings. Guess that just comes with the territory of parenthood, and considering what a turd I could be to my parents, its some quick karma I must deserve too.

Hope all is well with you,
Mama Murphy

Tuesday, February 3, 2009

Madeline and Modern Medicine

When President Kennedy's son was born 5 1/2 weeks early in 1963, there was nothing that could be done to save him because his lungs were still too undeveloped for what medicine could support. Today, a child born at that gestational week 34 is an easy patient.

Born at 30 weeks, Madeline Quinn is definitely benefiting from modern medicine. In fact, it seems as though she is fast-tracking in the NICU as she makes progress virtually every day...

She has recovered from the pneumonia they detected when she was three days old, which had her on a CPAP - an uncomfortable way of delivering high pressure humidified oxygen. Quinn then was on a nasal cannula, but as of this weekend has been taken off that and is breathing room air. Because her airway is underdeveloped, she does have some issues with apnea and low oxygen saturation. This seems to especially be a problem when I am holding her and she becomes so relaxed she stops breathing, or when she is receiving a feeding (through a tube that goes up her nose and into her stomach). So they might put her on oxygen for when she is being fed.

The big milestone of the week occurred when Miss Madeline Quinn crossed over the 4lb threshold. For the last few days her ability to maintain her own body heat was monitored and she did well enough to graduate out of the incubator. As of yesterday, she is now out of the "aquarium" and into a regular crib. Now that she is dressed in clothing and swaddled like a little burrito to help keep her warm, she is all the cuter!

Hope this finds each and all of you well!
Mama Murphy