Stability

Our most recent Wednesday clinic at Children’s was fairly productive.  The two-hour albumin infusion Annaka now gets every week, which moves much of the excess tummy fluid into her bloodstream and is followed by a ten-minute Lasik infusion that flushes it out her kidneys, worked well.  The decreased belly size allows her to breathe easier, which lets her do everything else easier, too.  She was super-talkative all evening and spent a good chunk of time chewing on her toes, a normal baby privilege in which she so rarely gets to indulge.

As always, we met with one of her doctors, who classified her as “stable sick.”  She still needs a new liver, but she isn’t really getting any worse, or at least not quickly enough to cause him concern.  Six weeks ago, however, this was not his diagnosis.  When he saw her in the hospital during her first bacterial infection of the summer, he said she would need a new organ within two months.  Well, we’re creeping up on the two-month mark and as of right now her surgeons seem confident they can wait for an organ more suitable for her size.

This is both good and bad.  Obviously we want her to get the best organ available even if it means being patient, and yes, we have struggled with all the moral and ethical grayness that desire brings with it.  At the same time, though, waiting is hard.  She is sick and we want her to get better.  Much of our lives are kind of on a “pause” button.  Her babyhood, like all babyhoods, is fleeting.  We have already watched our other two children grow up too quickly, and so we are stuck between this yearning to keep her little and an intense desire to wade through this mucky season as quickly as we can.

As always, though, each visit to Children’s carries with it yet another visceral reminder that things could be much, much worse.  It seems that in every elevator ride, we meet yet another family struggling through a diagnosis we can barely fathom.

I’ve mulled over Annaka’s ability to stay stable.  Much of it has to do with the prayers, of course, and her doctor called her a “fighter,” which I think is true.  (Anytime I get close enough, she eagerly scratches or slaps my face.)  There’s more to it than mere disposition, though.  Annaka is the product of great parenting, and what I mean by that is, she has the best mom in the world.

I know I’m biased, but consider these facts:

 For starters, her mom is basically a nurse without the crazy hours and student debt.

 JaLana’s background in science, especially anatomy, and her almost manic attention to detail makes her more than just a well-informed advocate.  When the doctors or nurses throw around all that medical terminology, JaLana actually understands what they’re saying.  She asks questions that sound like they’re coming from a med student because she has spent a crazy amount of time doing research on Annaka’s condition and a thousand other potential conditions.  Granted, this has meant she doesn’t really sleep, but it also means that she can not only care for Annaka’s current needs, she already knows what her needs might be weeks, months, years down the road.  So I’m not at all embarrassed to say that my role in all this is to play with Annaka, change diapers, drive them places, and wash the insane amount of bottles used each day.  I teach English.  I know my skill set, and it isn’t flushing the Broviac.

Secondly, her mom is a grocery store. 

JaLana chose to nurse our other two kids to good results and was determined to do the same with Annaka. Buffeted by mounds of research and multiple G.I. doctors telling her how good it was, JaLana has endured the intense schedule that providing homemade milk has required, which currently looks something like this:

Around 9:00 P.M. she expresses milk to put into Annaka’s overnight bag.  This milk is fortified with a high calorie formula especially designed for babies with liver failure.  This milk is fed through Annaka’s N.G. tube at a rate of 50 milliliters per hour.  She is supposed to get 500 milliliters overnight, so it’s a ten-hour session.

 Around 10 P.M. Annaka receives 4 different medicines and her broviac line is flushed to prevent a blood clot from forming in the line.

At 1:30 A.M. JaLana wakes up and expresses more milk.  This usually takes about fifteen minutes.  She then mixes the milk with the formula and adds it to Annaka’s overnight bag.  If JaLana is super-lucky she might be back to sleep by 2:15 A.M., but this rarely happens.

At 5:00 A.M. JaLana wakes up to express more milk.  This milk will later be frozen and stored for future use.  She has to express this milk, though, in order to keep her supply where it needs to be.  If she slows down her schedule, her body will stop producing.  This summer she has been able to go back to sleep after this, but starting next week, once school starts, she will be up for the day. 

Around 8:00 A.M. or so, she will express more milk.  This will become Annaka’s 11:00 O’clock bottle. 

Annaka usually gets off her overnight feed between nine and ten in the morning.  Because of nasal drainage, she throws up every morning.  Every day, without fail, she will throw up, often on me. Kind of gross, but it’s the only way her little body can get rid of all the mucus that has built up overnight. Somewhere between throwing up and her 11:00 O’clock bottle, we give Annaka her seven morning prescriptions.

JaLana will express again around noon, depending on the day’s schedule.  Annaka usually drinks anywhere from one to two ounces of her 11:00 bottle and then has to be tube fed the remaining two ounces.  Annaka has to get four, four-ounce bottles during the day, each of which are fortified with the high-calorie formula.  Each feeding usually takes about an hour, and is the only way she can gain any weight.

JaLana will express again in the late afternoon, around 2:00pm.  Annaka takes a bottle at two and at five and at eight, so, from two to three, from five to six, from eight to nine, she is being fed a bottle, most of it through her N.G. tube.  She is often asleep for much of this; sometimes she is awake and tries to grab her tube, or, for extra good measure, she fills her pants and leaks some on my lap.

JaLana will express again around 9:00pm to start the cycle again.  In a 24 hour period, we freeze about ten, six ounce bags of milk.  It’s insane.  If breast milk was cocaine we’d have a yacht the size of a barn.  But hey, it absolutely has played a huge part in keeping Annaka as healthy as possible, and all that frozen milk will also play a part down the road.

Finally, her mom is in her face. 

When Annaka sleeps during the day, saturated as she is by intense sibling noise, JaLana often holds her so she stays asleep, knowing she needs the rest.  When Annaka sleeps at night, JaLana takes the first shift on the couch.  (Someone has to sleep next to her in case she throws up at night, which she often does)  During the day, when Annaka is awake, JaLana makes sure she has some kind of human interaction.  This is how babies learn best, and since Annaka has so few waking hours, compared to most babies, JaLana tries to get the most out of them by reading to her, talking to her, playing with her.  I do too, of course, but I would also be content to just pop her in one of those baby jumpers on occasion.  If JaLana has anything to do with it, though, Annaka is getting talked to by someone. 

Regardless, at the beginning of this summer, we assumed the transplant would be complete before we went back to school.  I think the doctors thought that too, but here we are, less than a week from going back, looking forward to September and hoping that with it comes a new body part.

Nap

Annaka is a great sleeper.  She’s a champion at taking naps and often sleeps right through the night until morning.  While we often had to tip-toe around her brother and sister while they slept as infants, Annaka is often able to rest peacefully through some of the most absurd racket.

Unfortunately, she sleeps so well because she’s exhausted.  As I’ve mentioned before, the liver damage causes ascites in her belly, a watery swelling that pushes up into her lungs.  When she breathes, she often takes air as if she’s just run a sprint. Since she does this all day long every day, she literally wears herself out by just breathing.

Now we often look at our other two kids in disbelief, shocked by their remarkable health, a condition we had merely taken for granted most of their lives.

JaLana and I often ask ourselves, and each other, “If she’s happy now, with an organ that barely works, with tubes jutting out of her body and a belly the size of a volleyball, what is she going to be like when she’s, well, ‘fixed?’”

Because Annaka doesn’t know it’s not normal to have a feeding tube sticking out of her nose.  She doesn’t understand why people wince the first time they see the Broviac catheter hanging out of her chest.  Her belly has always been in the way, stunting her physical development, limiting her ability to move and  learn about her world.

This is all she knows.

What will she be like when she can know much, much more?

I’ve always considered myself a pretty optimistic, relatively positive-thinking person, but living with Annaka this summer, as her personality has started to come into its own, I’ve had to reconsider how limited my so called “upbeatness” really is.

I look at my baby girl, and I know she’s uncomfortable because I can see it in her eyes, yet she smiles.

She smiles and she reaches for my face and then pulls it to her own to offer me her sloppy, baby-version of a kiss.  She lights up at just the sound of her mom’s voice.  She’s happy.  She should be miserable, right?   She should be afraid, anxious about her future, angry at God for making her the way she’s made?

But she isn’t.  She smiles and she plays, fascinated by her ability to move the bright red block from her left hand to her right.  She watches her ridiculously loud siblings karate kick each other across the floor; she listens while her silly parents argue about another silly grocery list.

She smiles, she closes her eyes, and she once again falls asleep.