Journal of a Wee Boy’s Life and Aftermath

We used this page to post updates during Javid’s life and for a brief time after he died. It’s structured in reverse chronological order, so the earliest posts are at the bottom.

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June 9, 2007

Someone observing the two of us interact on an airplane might be forgiven for arriving at the completely incorrect conclusion that Ana Lisa is not a very nice person. Much as my dear S.O. tries—and she does try—she fails miserably in any attempt to take seriously my fear of heights. When my flingers clench around the armrest at liftoff, the muscles on the side of her mouth begin to twitch. As she reaches over in let’s-be-generous-and-call-it-authentic compassion to take my hand, only to encounter a sweaty palm, her breathing becomes ragged and her shoulders start to quiver. And oh if she catches me doing that classic panic move, the one where the plane veers one direction and I lean my body the other to, you know, balance things out a bit … then she’s gone. Her eyes may plead forgiveness, but her body is off to the races of mirth, tossed and tumbled by the gales of…

Heh. Even makes me laugh sometimes, and I’m the one with the neurosis.

Against her better judgment because, well, the status quo was such a durn gigglepalooza, a while back she began coaching me to lean into the turns. And it really does help, when I have the presence of mind to do it. I’ll probably never find flying completely enjoyable, but this one little trick allows me to avoid some of the out-of-control feeling.

A dear friend recently gave us When Things Fall Apart by Pema Chödrön, who writes about learning to “lean into the sharp points.” We’ve been trying to do that as we’re able, embracing the experience of grieving Javid instead of running away from it. Most of the time it works but, like when there’s a sudden dip while flying, we have moments where we get caught unawares and recoil, hearts racing and gasping for breath.

This week while tooling along my greatly missed off-road path along Lincoln Drive, I got knocked on my arse. Not even in the slightest bit figuratively. The knocker was another cyclist who came barreling down a hill (around a blind curve, on a gravel surface no less) apparently in search of a meeting of the minds … or rather skulls. Which was mediated a bit by two helmets, thankfully.

We both lay there, groaning a bit and gingerly probing for signs of damage, then rose to test wobbly legs and wheels. He apologized a lot, which he should have, and I asked him with as much politeness as I could muster to please be more careful in the future.

I suppose it’s never good to find yourself sprawled on your back, limbs akimbo, gasping for breath thinking, “Am I all right?” and have the predominant feeling be of déjà vu. Almost a month and a half later, there’s still a surreality to Wee Boy’s death that leaves us prone to forgetting followed by shocked recall. When our minds are present, we can manage at times to lean in a bit, finding some measure of sweetness in the sudden remembering. Harder are the moments when we’re distracted, only to wake up to find ourselves already in mid-cascade.

In our relationship we play different roles with each other at different times, but in general I tend to be the the figure-it-out-on-the-fly guy while Ana Lisa thinks things through more planfully. One of her many good ideas is to plan some of our remembering of the boy. So we try to build some of that, almost ritualistically, into our living. Deliberately finding ways to keep him in our minds does seem to help some with the painful moments of suddenly remembering that he’s gone.

British biologist Lewis Wolpert once pointed out that “there are many more molecules in a glass of water than there are glasses of water in the sea.” How peculiar to realize the odds are quite high any time either of us drinks a glass of water that some of that water once passed through Javid’s tiny body. In so many ways his presence continues to blend with ours.

For those (like me) for whom images help with remembering, we’ve finally added video clips of Javid’s memorial to the Memorial page. Check them out if you’re interested. And don’t forget to hydrate, to keep leaning in to the continual commingling of ourselves with each person and thing with which we share this wee planet.

 

June 1, 2007

For the first time since Javid’s birth, I broke the rules yesterday. (This is Tony the Super Rebel writing here). Rather than dutifully detour from my normal bike route to grunt up the steep Ridge Avenue incline into Roxborough, I ventured past the “Closed for Construction” signs and reclaimed my greatly missed off-road path along Lincoln Drive. Other than having to carry my bike past some construction workers at one point, I was happy as a clam … with legs … who knows how to ride a bicycle … and has a brain at least large enough to be aware of happiness. That happy.

The total distance to work is the same for both routes. The difference lies in the intensity of the climb. Whereas my preferred route traces a leisurely 1 3/4-mile climb up from the Schuylkill River to Mount Airy, the Ridge Avenue detour knocks the “mile-and” off the front of the three quarters and cackles as it watches me sweat and strain.

After taking some pride over the winter months from my ability to, well, “power up” isn’t the right phrase for sure, but maybe “not be utterly defeated by” the Ridge Avenue wall, I was glad yesterday to follow the milder path. And that’s how it’s felt lately. We’re finding ourselves notably lacking in ambition and energy. We keep moving, but it’s more of a meander than a stride.

We’ve been trying to notice what’s happening, and this is the best we’ve come up with so far: Much of the time we’re doing pretty well, finding joy in our tasks and pleasure in the company of others. When we’re not doing well, though, mostly what we’re feeling is hurt and sad. It’s not THAT different, but in one very fundamental way it is, from how things were when Wee Boy was alive. Then, much of the time we were also doing pretty well. But when we were not, mostly we were scared.

We’re not afraid anymore. Not true, of course; we fear lots of things. But we’re not, as we were so often before, scared for Javid. Now we’re just sad. Shown love in so many ways, supported beyond what we might have ever even hoped for. But inevitably sad.

It’s a strange transition, from scared to sad. It feels different in our bodies. There’s a dullness. It may be something as simple as the absence of adrenalin, which we think our bodies produced plenty of over the last half year, but we’re feeling kind of faded. And not the world-weary, slightly romantic kind of faded. This is a thrown-in-the-washer-with-a-buncha-rocks forced kind of fading that mostly just leaves us feeling banged up.

A week ago today we went and brought Javid’s ashes home. Lena and Phil Lakjer of Huff & Lakjer Funeral Home in Lansdale are long-time family friends, and stepped in with characteristic generosity and compassion to handle the care of Javid’s body. Here again another example of our wealth represented in the web of relationships surrounding us.

Making ourselves go and get his ashes was hard, though. It hurt to know that this was the first time we had ever had him in our car. Ana Lisa cradled the small container on the way home, and of course we thought of holding him. When we brought his ashes into the house, it felt like such a cruel distortion of the glad homecoming we had once envisioned. And finally to carry them up to where they’ll stay, for now, in what would have been his room … well, we wept. A lot.

And now, like so many other things we’ve had occasion to dread since last October, we’re both finding that we can move forward in the face of what hurts, and that it takes a lot out of us. Like Ani DiFranco, we’re trying to evolve. But, freshly sad in the face of fears realized, we’ll settle for the gentle slope round the back rather than try to heave ourselves directly up the high cliffs before us.

As the weeks pass, we’ve watched with wonder as people continue to send us cards, to call, and to reach out in other ways. Thank you. One of the gentle slopes we’ve found ourselves on recently is less energy for writing. There’s much we still would like to write about, and this website continues to feel very comforting and connecting for us. We also thank you for understanding that some of what helps right now is to at times be silent.

 

May 21, 2007

Neither of us is stranger to the occasional heartfelt TGIF, but rarely have we greeted a weekend so fervently! Just making it through last week felt like an achievement. And now how quickly saunters another Monday around the bend, acting all casual and innocent as if it just had no idea how unwelcome it was.

We’re still feeling a noticeable afterglow from the weekend of Javid’s memorial. Thank you again to so many of you. Curling around the edges of the warm feeling, of course, is still much sadness about the loss of our son. We’ve been trying to find ways to understand and navigate this period, where we regularly get caught up by such sudden strong emotions. On the one hand we welcome them, because even desperately missing the Boy feels like a way of marking his significance to us. But it can also be so jarring, especially when the moments sometimes come at such unexpected times and places.

One curious thing we’ve noticed is that feelings of warmth and closeness somehow seem linked to sadness. It’s very odd in the midst of feeling happy and content to suddenly get teary. And it’s one thing if it’s when we’re with adults, who by and large would (we think!) understand. It’s another thing entirely to be hanging out with our neighbor kids or the grease ‘n greph. It probably would be possible to pull off something like, “I’m sad about Javid, but I’m happy to be with you.” But so far we’ve generally gone for the “hey-check-out-that-bird!”-(quick-dash-away-the-offending-moisture) technique. :-)

There are many little things that hurt. With people it’s clear the basic formula is that pain is almost never caused intentionally. More often the hurts are related to places, things or just moments in time. We’re finding there to be a rich abundance of them. The week after Javid’s death was the worst, as we realized just how many little things in our house were reminders of him. And then there was the deciding what to do with them, whether to leave them, move them, pack them up, or even throw them out! Every move, pack or pitch, no matter how sensible, brought a stab of inner remorse. Are we packing away the Boy? Sweeping him aside?

But there was also a necessary survival component. The aftermath of his death was full of what Carl Sagan called “routine interplanetary violence,” referring to the constant collisions of the early formation of the solar system. With such a profusion of small jaggedy material flying all over the place, of course things are going to constantly smash into each other. Not to clear a path meant every glance fell on something. Going around corners, looking in drawers, even closing a window on the computer desktop and suddenly seeing Lil Boy peering out at us. So many perils sprinkled all around we eventually just had to bring some order to our system, which for quite a while now we’ve taken such pleasure from having revolve around the son.

We’re both clearly surviving and clearly way messed up. A lot of this sucks a lot. We miss him and we miss him and we miss him. And life still somehow manages to hold much sweetness. Blending his particular Niblety goodness with other joys of living seems like a task that will take a while. But we’re still grateful for every wee moment.

(Oh, we’re still working away at the Memorial page. Figuring out how to turn the slideshow into something that could be viewed on-line took much longer than we’d hoped, but it now seems to work.)

 

May 16, 2007

After saying good-bye to the last of our wonderful visitors on Monday, we’ve had to spend some time in the last days focusing on work. We love our jobs, but this is definitely one of those weeks when it’s hard to focus.

We’re just starting to pull together some things from Saturday, which we will then put on the Memorial page. It’s definitely a work in progress at this point, so if you check it out you might want to also check in again a week or so from now. Right now it’s mostly just got pictures of a few things that people left after the neighborhood gathering. If you’re missing a plate, make sure to check if one of the ones we have matches yours. We’ll happily work to get it back to you.

We’re hoping to eventually have access through that page to a video of the memorial, for those who may be interested.

 

May 13, 2007

About yesterday and all of you who flew like an Iggle … to the sea, who straddled and rattled the rails, Daryl barreled down the byways, rolled round the bend or crept out from under the covers. Who bent thoughts, who fired lobes, who kythed. Who sang and spoke. Who sliced, sautéed and schlepped, then gobbled, grazed and schlurpped. Whose bodies gave and whose hearts sent very scary hairy bear hugs. Who channeled Tony’s brother Dave, six years old, hands thrown back mouth open to the sky singing “Rain rain rain, what’s so bad about rain?” However you joined with us in seeing off and gathering in the Wee One … just this:

He would have loved every minute of it.

Thank you for yesterday, and the days before yesterday. Now may today be a happy day for all of you, those who mother biologically and those whose mothering laughs softly and knowingly as it zydeco swings beyond the limits of gender and blood.

 

May 11, 2007

“…then laugh, leaning back in my arms, for life is not a paragraph, and death i think is no parenthesis”

– e.e. cummings

So many people have been reaching out to us in so many ways mighty and wee. We don’t know quite even how to react. (As evidenced by the fact that we’re now cobbling words together like “quite even.”)

We want to say we’re taken aback, but really what it feels like is being taken up on your strong backs and born along, with seemingly both the greatest of ease and the greatest of pleasure. And as we glide where we should stumble we wonder, you lovable louts, do you recognize what a motley crew you make? Do you know what varied “world” “views” produce the same formula with such small deviation: “I can’t find the words/There aren’t words for a time like this/I wish I knew what to say” followed by just … the … perfect … thing we needed to hear at right that moment.

Y’all are some amazing folk, you are. We can’t wait and we’re scared to herd together your disparate derrières in one location. But mostly we can’t wait. How rare and how right that there be things about tomorrow we find ourselves looking forward to. And if we’re tired, sometimes preoccupied, and often sad, how lovely to have people anticipate and forgive. You’ve given us so much.

If on top of all the rest you’re wishing—masochists—for yet one more way to show support, join with us in wishing the forbearance of Chaac, the Mayan god of storms, who (ironically in this case) is also referred to as “he who gives food away to other people.” The weather reports have been teasing us for several days, sometimes predicting rain for tomorrow and sometimes not. We have a place to be indoors for the potluck gathering, but we’d much prefer to be outside on our block if possible.

We feel like a glitchy iPod (meaning no disrespect to those of you who still hold on to your records, broken or otherwise), but thank you. Thank you for the e-mails, the guestbook entries, the cards, the phone calls, the food, the flowers, the gifts both to us and to others in Javid’s honor. All the kindnesses. Our cup flows over.

 

May 4, 2007

It seems fitting somehow. After looking into having Javid’s memorial at Methodist, Presbyterian, Quaker, Catholic and Mennonite churches, the Ethical Society, a Garden, an Arboretum and several schools, we ended up settling on a place where representatives from any of them plus the local biker gang could sit together and feel welcomed and appreciated.

Javid’s memorial will be held on Saturday, May 12 at 2:30 p.m. at the First Unitarian Church, 2121 Chestnut Street here in Philadelphia. We would like to invite any of you who are so inclined or able to accompany us.

Because once we get you together we know we’re not going to want to let you go, we’d also like to invite people to a gathering after the memorial back on our block. If the weather doesn’t cooperate, we’ll migrate into the basement of the Calvary Center on the corner of 48th and Baltimore. Whether we end up inside or outside, we’d love for you to consider extending your time with us and honoring Javid by sitting around, eating and chatting up our neighbors.

We’ll be compiling and updating information about both “events” on a separate Memorial page, which you can also access from the main page of this web site.

 

May 3, 2007

We are still finalizing details about the site and the exact time, but are now sure that Javid’s memorial will be on Saturday afternoon, May 12. We would love for all to come join us as you wish or are able.

 

May 2, 2007

Several people have inquired about charitable donations that could be made in Javid’s name or spirit. We’ve put together a page with some ideas, for those who may be interested.

 

April 30, 2007

Yesterday and today we’ve taken some first steps toward planning a memorial for Javid. We originally thought we might try for this Saturday, but it’s been a bit complicated to schedule. So we are now hoping to be able to have the memorial on May 12. Once we have a date, time and place firmed up, we’ll post it here.

Thank you to the many of you who have left such lovely posts in our Guestbook, sent e-mails, cards, flowers, plants, brought food glorious food or called. We were amazed Saturday morning to have the first other-than-Guestbook-entry arrive at our doorstep in the form of flowers sent by Ana Lisa’s cousin Obie and his wife Kari … who live in southern Sudan. How intimate the world becomes through this wide, wide web!

For those who prefer writing and/or sending things they can wrap their fingers around, here is our physical address:

We’d like to wrap our fingers and our arms around the lot of you for being so nice to us in the last days and months. Thanks again.

 

April 29, 2007

It’s a cruel crazy beautiful world
Every time you wake up I hope it’s under a blue sky
It’s a cruel crazy beautiful world
One day when you wake up I will have to say goodbye
It’s your world so live in it

Beyond the door, strange cruel beautiful years lie waiting for you
It kills me to know you won’t escape loneliness,
Maybe you lose hope too
Ayeye ayeye jesse mfana ayeye ayeye

When I feel your small body close to mine
I feel weak and strong at the same time
So few years to give you wings to fly
Show you stars to guide your ship by

It’s your world so live in it

Johnny Clegg, excerpted from “Cruel Crazy Beautiful World”

Hey.

Since yesterday afternoon it’s been getting clearer. Time to start writing again.

But a gulf (like one of those rural Guatemalan “potholes” whose muck can swallow up a tractor trailer) seems to have opened up between the intent and desire and the ability to sit down and produce coherent sentences. It’s all Eighth-Grade-Tony—skinny and gawky and sprouting like a weed, voice cracking baritone and soprano, feet all tangled up with each other. Too much change too intensely too fast. Fronting and collapsing. Giggling and sobbing. Girding up our loins and curling in agony around the “family jewels.” Everything jars and jangles and irritates, but silence holds the greater menace. Better the noise, even when the needle skips and screeches.

Yesterday morning at about 10:30 Ana Lisa’s parents, brother Steve and sister-in-law Nadia—the last of many gentle companions in recent days—left to go home. After a week of great stress and the marathon that was the last few days of Javid’s life, we both needed and dreaded to be alone. An empty house is such a thing of peace and horror.

Lassitude. Languor. Verbs like “slog” were created for just this moment. We can’t make the smallest decisions. We check with each other, over and over. “How’re you doing?” “What do you feel like doing now?” Neither of us knows, and each keeps hoping the other will.

After a day of both pain and peace … no, peace isn’t right, peace is grit between the teeth. Friday was a day of shalom with all the weight on the Om, deep and reverberating. Yawning chasms of hurt enveloped in full acceptance. We held our little boy as he stopped breathing and we wept and wailed. And after we cried for a time and then didn’t and then did again, we stood up and walked out to our family. Our tears were gone for the moment and we could let them cry for us.

After Friday and Thursday and Wednesday Tuesday Monday Sunday which we want to write about and want to tell but not today, we got to Saturday 3 a.m. and a sick, startled waking. Javid gone. So final. We twisted and grappled with the demons of doubt, felt ourselves tip and yaw. And we wrestled with ourselves and with each other, questioning and doubting. Testing. And we cried and talked and eventually even laughed at ourselves a little. Exhibit A in the Pieces of Work Gallery.

Would you like to know a way we’ve been fooling ourselves for a long time? By pretending for even a moment that we’ve ever accepted being completely powerless over what happened with Javid. For months we’ve been coaching and reminding ourselves that we don’t have any control over the situation. Crap. Right from the beginning we’ve scrapped and scrabbled to latch onto any little thing that we thought might somehow help him.

Javid’s ending is our failing. We think we need to face the fact that we believe that, whether or not it’s true. The losses and regrets are mountainous.

Friday afternoon after Javid died and we went out to let our family in to see his body, Wee Boy’s grandparents, aunts and uncles and a dear friend entered the room to touch him and to hold him, disconnected now from all the tubes and wires and all the machines. That, we think, may have been our moment of greatest grief. We always wanted a kid that could be passed around, and hate that so many of our family and friends never got to hold him. We wanted him to be healthy and hardy, sure. But we also longed for him to be hardy of mind and spirit—so certain he was and would be appreciated and valued by the one holding him that he would never need look back when passed on to the next. So surrounded in unconditional love that when he finally got to go out into the cruel crazy beautiful world he could be like Kurt Vonnegut’s sister Alice, who “never thought of her awful luck as being anything but accidents in a very busy place. Good for her.” Unlike his parents, who need to keep reminding themselves, we wanted him to know in his bones that “all is well” even when it sure doesn’t seem so.

In the many months of Javid’s hospitalization, we soothed our sadness over not getting to care for him with the joy of him having so many other true care givers. Javid’s nurses and therapists have been his Mommies and Daddies in so many marvelous ways. His doctors have wept with us and cared for him and us all along the way.

And you, you all have been the Host, the Chorus. And maybe that’s what we’ve been trying to do with the pictures and words on this web site, pass him around to all of you. Communal baby. Like a rock concert where the singer dives off the stage and is held up and moved around—effortlessly—by the hands of the crowd.

And it hurts that all that loving didn’t pull him through. And the disappointment is bitter. And we do blame ourselves, for somehow not caring enough or believing enough or being committed or convincing or eloquent enough. Whatever.

We know we’ll get there, wherever “there” is. We are thankful for so much and so many. And he was a wonderful little boy, whose absence leaves us impoverished but whose life enriched us more than we can say. Salaam, Wee Boy. Shalom.

 

April 27, 2007

10 p.m.

Our dear, sweet Javid died tonight at about 5:15 p.m., around the same time he was born last October 8. This week we had to make decisions that influenced the time and manner of his passing, which we will write more about later. Tonight we are mostly just sad and really exhausted.

More to come but we want to communicate how much the words and presence of so many of you have buoyed us up through this excruciating week. Thank you…

9 a.m.

We want you all to know that we’re so very grateful and feel so very held by you. Thank you for caring about and for the three of us.

We will write more soon, but these are hard days and the words feel all wrung out of us at the moment.

 

April 25, 2007

So many of the inhabitants of our nightmares have just been wrapped up in a bow and dropped on our doorstep. Not only is Wee Boy on the oscillator, heavily sedated and at very high settings, but we’re being presented with options … all of which we hate. Abruptly we’ve watched our fears coalesce into the one we’ve dreaded most from the beginning—the need to make decisions without the path being clear. This cup among the whole dinner set is the one we wish with all our hearts to have taken from us.

Once we hitched a ride in the Sinai Peninsula. The friendly Egyptian man who picked us up quickly accelerated and soon was “driving like Jehu” down the empty desert road at speeds in excess of 90 mph. After some 10 minutes he casually reached between the seats, pulled out a bottle of whiskey, and took a loooong pull. A moment passed as we slowly registered what had just happened, but he must eventually have noticed the look of we don’t even know what on our faces because he flashed us a grin in the rearview mirror and quickly reassured us: “Don’t worry, I strong for this.” And on we flew.

Well, we’re not strong for this. Nope. This makes us want to curl up into a mewling little ball or skitter away into the deepest recesses of our minds.

Yet here we are. And here he is. And he’s such a dear boy, and he’s been so very strong. And he lays there, with his chest bouncing and jiggling from the oscillator, and despite all the efforts to keep him calm and relaxed he fights through the sedation, opens his eyes and looks at us. And we melt and we weep.

And we’re not strong. Not for this.

 

April 24, 2007

While we’d love to be able to report that the Lil Boy is doing better, that doesn’t seem to be the case. He’s up again on his oxygen needs, despite being sedated pretty heavily. We just heard that they’re going to be switching him back to the oscillating ventilator to try to give him extra support. That feels like a big step backward to us.

They’re holding off on the echocardiogram for now, not because they don’t think it’s related to the pulmonary hypertension but because they’re quite sure it is and are trying to tax him as little as possible.

If there were a coded system for emotional states, you could go ahead and color us miserable right about now.

 

April 23, 2007

4 p.m.

We were able to get in to the hospital for a short time late this morning and met the Niblet’s new attending, Dr. Munson. Although they still hadn’t done an echocardiogram, Doc Munson was quite sure his recent troubles are related to the pulmonary hypertension. They’ve tinkered a bit with his settings, and he’s now hanging out at about 78 to 80 percent oxygen support.

One of Dr. Munson’s recommendations is to again sedate him pretty heavily, to see if he can ride it through. They’re going to use methadone this time for the sedation. Morphine, Viagra, methadone … Wee Boy sure is getting to work his way through a smorgasbord of mood-altering pharmaceuticals, i’nt he?

Depending on what the echo shows and how he seems to do through the week, they might still consider moving forward with the trach. It very well may get delayed, as well.

Dr. Munson said he’s seen some kids come through this and others get worse. Boy does this sound familiar. What’s the phrase?: “Familiarity breeds contempt.” It is indeed true we’re finding ourselves decidedly lacking in warm fuzzies toward the various woes that seem determined to take a run at our kid.

We’re both at work, a little distracted of course.

9 a.m.

Car door slams, wheels spin away and suddenly we find ourselves plopped on our dusty butts right back in the Town of Oh How We Hate Being Here. Javid’s not doing well again. Uggh.

Over Friday and Saturday Javid’s ventilator needs climbed slowly but steadily. By Sunday morning he was up once more at the dreaded 100 percent on his oxygen support.

For much of that time he appeared restless and irritable. They’ve been giving him extra morphine to settle him down, because prior to Saturday night he hadn’t really slept for about a day and a half. On Saturday they made a bunch of adjustments and checked out different possibilities, including looking to see if there might be some kind of infection. In the end they didn’t find any signs of infection or obvious other problems with his lungs or airway.

On Sunday afternoon they changed his breathing tube, which he’d had for about a month. Initially he responded very well, dropping from 100 percent oxygen support to just 55 percent. However, once he woke up from the sedation they gave him for the reintubation, the numbers started to climb once again. According to Nurse Maureen, who had him during the day shifts from Friday through Sunday, that probably meant his positive reaction was due more to the enforced relaxation of the sedation than to a significant problem with the previous tube.

Apparently through the night he was mostly in the 70s, but just a short time ago when we called in he was once again up at 100.

Our fear is that this is a reoccurrence of the pulmonary hypertension that had him in such a precarious place two months ago. The climb through higher and higher ventilator settings sounds awfully familiar in that regard. We know the CHOP folk are concerned about the pulmonary hypertension, too. Last night they tried to do an echocardiogram, but weren’t able to complete it so it got rescheduled for today. Once that gets done we may know more. As has been true so often during these months, we’re both impatient for that information, and dread what we may learn.

It’s another beautiful day outside here in Philly, but it’s pretty hard to enjoy at the moment! We’re worried.

 

April 20, 2007

We think we got good news yesterday from the hearing test. The Boy’s wee left ear measured close to normal. His wee right one didn’t, but when they looked at his ear drum it appeared stiff, which apparently is a common sign that there’s fluid behind it. So before being tested again, he needs to be evaluated and treated by the ear, nose and throat specialists.

The results were exciting on many levels. First, to have it confirmed that he has hearing of any kind is wonderful. We thought he did, but it’s hard not to feel anxious when you get the word that your kid “failed” a hearing test. Secondly, to learn that the problem may be a mechanical one that can be fixed is way better than the alternative. When we heard the news yesterday it was worth a hearty “phone five” across the city between our respective work sites.

The third and fourth reasons we got all excited have more to do with the involvement of the ear, nose and throat specialists. It just so happens the Spanish word for ear, nose and throat specialist is Tony’s absolute number one super favoritest word in the whole Spanish language. Otorrinolaringólogo. Isn’t that just wonderful? The first time he learned it Wee Boy’s Daddy laughed out loud, and now he starts giggling every time he gets a chance to say it. Otorrinolaringólogo. Otorrinolaringólogo. Just makes you happy to be alive, doesn’t it?

Reason for excitement #4: Lest anyone think those crazy Spanish-speaking folk get all the fun, isn’t it great that there’s a medical specialty encompassing three body parts as varied in form and function as the ear, the nose and the throat? It makes us think of other wonderful conglomerations, like the Bureau of Alcohol, Tobacco, Firearms and Explosives … which used to be known as just the Bureau of Alcohol, Tobacco and Firearms until someone (probably in marketing) apparently pointed out that it seemed to be missing that little extra “pop.”

Little Boy can hear. Makes us happy. Yay.

 

April 18, 2007

The Boy may still be small but the news is big and a bit daunting. Yesterday we had a family meeting—or as we like to refer to it, a (high-pitched nasally voice) “fambly” meeting—with Javid’s attending, Dr. Ades. She told us that after having Javid at CHOP for several weeks, and on the heels of all the tests they’ve been running, they are indeed going to recommend he get a tracheostomy. Gulp. We knew this was likely, but now that it’s actually on the table we’re pretty scared and more than a little sad. The surgery itself is frightening and we hate the idea of his little body having to go under a knife again. And while we recognize this is probably the best thing for him at this point, we’re also grieving how this will impact his (and our) next several years.

The trach surgery could happen as soon as next week! Because he has a problem with reflux as well, they will also be installing a gastrostomy (GT) tube and performing a procedure to tighten the valve between the esophagus and the stomach. If we didn’t know better, we’d say all this is starting to sound like auto mechanic work. Case in point: the valve tightening is called a Nissen fundoplication, which also proves once and for all that the medical profession MUST have a sense of humor.

Since he’ll be under anesthesia, they may also take the opportunity to repair two hernias that currently have his testicles looking a bit generously proportioned. ‘Nuff said about that.

The wonder of all this is that he’d have no more tubes coming out of his face, and should then start being able to move his head around freely and learning to use his mouth to suck and swallow. We just wish it didn’t have to involve multiple surgeries spanning, if not from head to toe then from, er, nuts to nose. Poor boy!

Dr. Ades told us that he would likely get sicker for a short period after the surgery, and that they would be keeping him quite sedated for several days. If he responds well, they’ll change the initial trach tube after a week, and at that point he should start being more awake and more mobile. Post-surgery will involve an extended period, probably two to three months, where his job is to get more stable and ours is to be educated in the care of his trach and GT tubes.

If all this works out, the Grand Niblet Homecoming might be sometime in mid to late summer. He would probably leave the hospital still on a ventilator, but with an extra mobile ventilator that could be used to take him on trips or to the park. He would also apparently be eligible for a good bit of in-home nursing as long as he has the trach tube. Since that would be for at least a year, and more likely two, another adjustment we’ll be having to make is to other people in our home. Looks like there are two people in West Philly who are going to have to get a little better at keeping their house clean! Maybe this will be the experience that finally turns us into the neat and orderly types we’ve always aspired to be. Uh huh.

Let’s see, what can we tell you that doesn’t have to do with a trach? He’s had a pretty restful four or five days on the heels of a somewhat end of last week. It may have been that his pressure support settings had been lowered a little too quickly or a little too far. Whichever, after appearing to tolerate the lowered settings for a while he seemed to hit some kind of wall last Wednesday afternoon. It made us nervous, but fortunately his reaction wasn’t extreme nor were the adjustments that had to be made to bring him back into equilibrium. They bumped him back up on some of the pressure supports, and after a day or so he was much more relaxed. He gives every impression of being the kind of Niblet who responds better to coaxing than to prodding. If we can remember that, it may come in very handy later—say when he’s 15 or so….

Regarding the tests that he’s been subjected to since the transfer to CHOP, we’ve learned a few things. It seems, at least for now, his pulmonary hypertension doesn’t appear to be getting worse (and may be showing some teeny weeny signs of getting better). We also (finally!) heard the good news that Lil Boy for sure doesn’t have cystic fibrosis. We didn’t really think he did, but some of the symptoms of his chronic lung disease are also quite common in cystic fibrosis. They’ve been talking about conducting a definitive test for almost a month now, but somehow it never seemed to happen. When we finally heard the news on Sunday, we thanked the good doctor, waited until no one else was around, then exchanged a surreptitious no-look high five. :-)

Topping tomorrow’s anxiety list is a scheduled ABR diagnostic hearing test, on the heels of the initial hearing screen which Javid “otherly passed” last week. We would love to find ourselves post-test tomorrow mounting a reprise of Sunday’s high-five, but are trying to prepare for the possibility that Wee Boy may have hearing loss. Guess we’ll figure out what to do and how to feel once we know more.

Other than that, what we’ve heard is that the rest of his tests have generally not shown anything remarkable. That means no abnormal growths, blood clots, fistulas, etc. Rather they seem to confirm that Wee Boy is indeed a baby with chronic lung disease brought on by prematurity. No news there!

 

April 11, 2007

Sunday at 5:13 p.m. marked six months of spinning round and round on Javid’s Crazy Carousel Ride. We feel a little dizzy, but exhilarated.

In the last week and a half they’ve been able to wean many of his breathing support settings. Some of the settings are still high, but others have come down to levels we haven’t seen for quite a while. That’s been very encouraging. He’s also been getting a lot of tests, only some of which we know the results from. Tony sat for a while with one of the residents yesterday, and then when Ana Lisa got in for the evening shift she got to talk to a physician’s assistant. We didn’t plan the double team, we just both were running during the day and didn’t communicate much. The nice thing about both having had a chance to check in was we got to compare notes at the end of the day.

So here’s what we think we know. A “milk scan” last Friday did show some evidence of reflux, meaning stuff is coming back up from his stomach into his esophagus. With reflux there’s risk of him aspirating stomach contents down into his lungs—better known in some circles as the ole’ “down the wrong pipe” syndrome. To cut down the risk of aspiration, Javid’s nurse pushed his feeding tube further down in, right on past his stomach and into the duodenum. Although this sounded all gastric bypassy to us, apparently it’s a quite common step taken with intubated babies like Javid. Since he’s getting fed very slowly, the storage function of the stomach isn’t really needed at this point.

Basically the strategy seems to mimic a simple conflict resolution strategy among children. Take Javid’s Aunt Bev, for example, when she was younger and sitting at the piano to practice. She’s the esophagus. (Just wait for the rest of the story before protesting the analogy, sis.) Now take Javid’s Uncle Dave, four years younger and all excited about “helping” his sister with her piano playing. He’s Ana Lisa’s breast milk. (See, wouldn’t you rather be the esophagus? Sorry Dave.) So Ana Lisa’s breast milk (aka “Dave”) doesn’t really have any business hanging out above the stomach, just like Uncle Davey’s “help” undoubtedly would have scuttled any possibility of Auntie Bev getting a career out of all her hard work.

So “Dave” is currently getting sent down to the very entrance to the intestines, around the curve of the stomach where it won’t even be able to see “Bev” and so won’t be tempted to come back up and mess with her. We don’t really know a whole lot about physiology, but it seems like good psychology, at least.

Moving on. In yet another example of a test looking for something we hadn’t even considered worrying about, a ventilation-perfusion scan (better known as a V-Q scan because, well we don’t really know but maybe just because a V-P scan might sound like it was looking for evidence of Dick Cheney) showed no signs of any blood clots in his lungs. Yikes and yay all at the same time. The V-Q scan apparently also showed that there are no major disparities between the ways different parts of his lungs are processing oxygen. We don’t really know what that means yet.

Wee Boy also had another echocardiogram last week. All we’ve learned so far about that is that if there had been something particularly worrisome we would have heard. No news, good news.

Most of the tests mentioned so far have trended toward the anxiety relieving. One that has us stressing a little was an initial hearing screen, which Javid failed. The news came a bit out of left field, since we’ve often been told by his nurses that they considered him particularly sensitive to sound. He’s had a sound maker in his bed for a long time to partially drown out all the monitor bells and whistles, and he has seemed to respond to it. On the other hand, he has been on medication at different times that apparently can interfere with hearing development. So we’re not really sure what to think. We’ve been told that this initial test is not always accurate, and that things like wax or fluid buildup in his ears might also have played a role. So over the weekend he got ear drops, and this Friday they’ll perform a more in-depth test.

Obviously we’re hoping our little boy can hear. But we’re also grateful for how many things he is able to do. He seems to have avoided needing laser surgery. Since the intestinal surgery in the fall, his eating has gone great (well, except for “Dave” messing with “Bev”). He’s growing in size, strength and awareness.

Compared to where we found ourselves six months ago (and of course pending any potential other shoe droppage), life is pretty good right now.

Happy 6 month birthday to the Boy!

“Remember, Ginger Rogers did everything Fred Astaire did, but backwards and in high heels.”

Faith Whittlesey

p.s. A note from Javid’s Daddy: Yesterday marked another significant anniversary—half a year of Ana Lisa “pumping lumps.”

On top of the anxieties we’ve both shared, AL’s had to deal with preeclampsia, a C-section, blood pressure fluctuations for several months, as well as all the hormonal and body shape changes that come with any pregnancy and delivery. Through all of that—six times a day, every single day—she’s strapped on that pumping gear and let her boobs get yanked on by a machine, even when it hurt so bad it made her cry.

It seems quite clear from whence comes Wee Boy’s fighting spirit. “Backward and in high heels,” baby. You’re amazing.

 

April 5, 2007

All’s pretty quiet on the West Philly front. Wee Boy’s been quite stable for about two and a half weeks now, which is more wonderful than we can say but of course brings some accompanying “wait for the other shoe to drop” anxieties. Today he’s down to about 51 percent oxygen support, and has even managed to get weaned a bit on some of his pressure settings.

He was scheduled for a gob of tests this week, but a number are still pending and look likely to spill over into next week. We did find out, thankfully, that there was no evidence of a fistula between his esophagus and trachea. The road less travelled is all well and good Mr. Frost, but not when it’s between your stomach and lungs!

Little by little he, and we, have been settling in at CHOP. We’ve liked the nurses he’s had so far, and they seem to be taking good care of him, which we greatly appreciate of course! It’s strange, though, having to learn a whole new system and new group of caregivers.

Both of us have found ourselves feeling a bit lonely this week, even as we’ve been relating to and generally enjoying the folks at CHOP. There are 20-30 nurses on the team that cares for Javid, so that’s a goodly number of people to get to know. We’ve met a few of the doctors, but not his current attending physician or fellow as of yet. We’ve been told his attending will have him for this week and the two following. Then there are respiratory therapists (one of whom Ana Lisa thinks is the object of Niblety flirtation) and a host of specialists, as well as all of the receptionists and orderlies. It all adds up to quite a crowd of new people in our life.

We feel a little as if we were moving onto a new block, and hoping the other kids will like us! Maybe if we brought in a new ball…? :-) Much as we’d wish it not to take time and effort to adjust, of course it does. And of course it’s a process for the CHOP folk to get to know us, as well. (What’s to know? We’re nice—end of discussion! And no, siblings are not allowed to weigh in here.)

We learned from our months at Pennsy that NICU staff encounter all kinds of things in relating to parents, so it makes sense to us that the CHOP staff is feeling us out as we’re trying to do the same with them. It’s an interesting challenge to feel anxious and vulnerable while also trying to find ways to communicate that we’re relatively sane. It would help of course if that were actually true….

Ah well, we’re trying not to overthink things. Or rather, when we inevitably do, we’re trying to catch ourselves and at least get a good laugh about how silly we are. (Here siblings are allowed to chime in … a little. But no co-workers.)

 

March 30, 2007

Just writing a quick note to report that Javid’s bronchoscopy is done and seems to have gone well. We even got to see the video, which of course Tony immediately asked for a copy of. If we get it maybe we’ll figure out a way to post images of the inside of Javid, instead of the same old boring shots of his outside. Think of it as a kind of WeeBodyWorlds. We got to see the setup before the procedure and had it described to us. Basically they sent a long tube with a scope at the end of it down through his breathing tube. The scope also had the ability to squirt in saline to loosen up nasty stuff, as well as suction capability. That part of the procedure was called a lavage. Doesn’t that all sound cool and refreshing? Someday maybe someone will invent a bathtub with a lavage button. (Yes, yes, we know there’s someone out there who wants to pipe in with a crack about bidets. We were planning to take the high road and not go there.)

We’ve learned a few things already, although it sounds like other information will take some time coming. They found collapsing in some areas, and some small cysts. Apparently both things are pretty common in babies with chronic lung disease. Obviously there is scarring, but that was not something that could be directly seen in the bronchoscopy. There were no huge cysts, however, or obvious signs of abnormal growth.

The one thing they did find in abundance was thick secretions. No surprise, but yuck. They suctioned out a good bit, and put little drops of Dornase on the rest of it to “encourage” it to break up. The pulmonologist that we spoke to said the secretions were likely a sign of on-going infection. What they suctioned out will now be sent off to the lab, and if they can identify specific bugs they’ll try to target them specifically.

We had a chance to sit down and talk with his current Attending about some of the tests they’ll likely run over the next week as they build a treatment plan for Javid, but frankly we’ve forgotten most of the conversation! We do know they want to check out the possibility that there might be a fistula between his trachea and esophagus allowing food to enter his lungs.

So anyway, right now we’re feeling grateful that the lungosuction seems to have gone well, and that there don’t seem to have been any big surprises. We’re also finding ourselves taking some comfort from feeling like there are some new options for testing and treatment at CHOP that may really help the little tyke. It’s a nice way to end the week.

 

March 29, 2007

Javid’s getting a bit of a break day today, although it’s not really that much of a break when the day includes an EKG, blood work, etc. He seems to be handling it fine so far, hanging out in the 60s on his oxygen support and generally appearing restful. That doesn’t mean he hasn’t had his moments of upset. There’s something terribly poignant about seeing his face contort, his eyes clench, and his mouth open to let out … nothing, because of the tube. On the one hand we’re not exactly complaining about not hearing a bunch of baby cries. On the other, we’d love for his lungs to be in a condition for him to let out a thunderous wail.

Tomorrow in the early afternoon he’s scheduled to get a CT scan. This will hopefully give the pulmonologist a better view of his lungs than yesterday’s X-ray, for the bronchoscopy which will shortly follow. We’ve been told that the bronchoscopy is not considered a complicated procedure, and that the swelling in his heart shouldn’t increase the risk greatly.

We’re both nervous that he’s having another doc take a dive inside his body, and eager to see if the “lungosuction” can maybe help him some. We’re a bit leery of losing some of the comfort that comes from clouded vision. Ignorance can be, well, if not bliss exactly then at least delusionally soothing. We think the bronchoscopy will give the doctors a much clearer picture of the actual condition of Javid’s lungs, and it’s not likely to be pretty! So look for us to sound a bit chastened after tomorrow. What we’re hoping is that the news has some nice things mixed in with the scary.

We shall see. In the meantime we’re enjoying meeting some of the nurses and doctors. And have we mentioned that his new quarters are quite stunning? Y’all will have to come hang with us in Javid’s new crib. Well, he’ll be the one in the crib, which will be in his crib, if you feel me….

 

March 28, 2007

If not developmentally then at least geographically, Wee Man took a few steps closer to home today. Late in the morning he was transferred from Pennsylvania Hospital to the Children’s Hospital of Philadelphia (CHOP).

We were both scheduled for the same work-related meeting this morning (yes, even in our work lives we’re an undifferentiated ego mass). But Ana Lisa left early and Tony bailed completely so we could see him off from Pennsy and then check in on him briefly at CHOP. Javid’s nurses at Pennsy had him all prepped, and the transfer went off seemingly without any negative impact on Little-Boy-Hope-He-Doesn’t-Please-Oh-Please-Let-Him-Not-Turn-Blue.

As a result at least in part, we suspect, of some artful maneuvering on the part of the Pennsy staff, he even got a bed in the fancy new wing of the CHOP NICU. It must be a sign of their professionalism (or maybe just their maturity relative to, well, ours) that the Pennsy folk keep treating us so nicely despite all our teasing. Whatever the reason, it’s impossible to express how wonderfully our whole family has been cared for by the staff at Pennsylvania Hospital. Y’all deserve all the respect in the Universe … and Tony just finished reading Pale Blue Dot, so we’re imagining a pretty huge amount of respect here. Javid’s not the only one that’s survived these months because of you. What do you rock? (Lemme hear you now…) Our … Socks! :-)

Anyway, Wheezy McCheesy may still have scarred lungs, a swollen heart and a tube down his throat, but he sure shouldn’t have any complaints about the plush new accommodations. And it seems apparent that for where he’s at, CHOP is the place he should be.

Speaking of the place one should be, we’re both (albeit reluctantly) off and about our work lives for the rest of the day. So we’ll end here, and continue writing more once there’s more to write.

 

March 27, 2007

Just a short update tonight: Tomorrow it appears Javid will be transferred to CHOP. He may (or may not) then have the bronchoscopy on Thursday or Friday.

The last week and a half have been blissfully steady for him and for us. The nebulized (gas or fine spray) antibiotic he started receiving two weekends ago seems to have had a significant impact on the bacteria in his lungs. And the other medication, which we finally remember the name of—Dornase—seems to also be helping to break down his lung secretions. Whether it’s all attributable to that or not, he’s had about 10 days of relative stability. Our mental health has likewise improved—at least back closer to what passes for “normal” in our case….

So now we’re off to CHOP, in the process leaving behind so many wonderful people at Pennsylvania Hospital … including some that—whether they like it or not!—have now been elevated (or relegated, depending on their perspective and tolerance for crazy relatives) to the role of honorary family members.

We’re nervous but also curious to see what’s to come.

Stay tuned… :-)

 

March 22, 2007

Hi everybody. Javid seems to have leveled out a bit in the last several days, once again back in the 60s and 70s on oxygen support. His lung secretions are much reduced, likely due to the new medication he started getting over the weekend (we still don’t remember what it’s called).

It’s looking more likely that he will be transferred to CHOP, possibly over the weekend or early next week. We’re feeling a combination of nerves, excitement and resignation about the move. We’re nervous because in moving to CHOP he will likely be facing some interventions that carry some risks for him. We’re excited because it sounds like he might get some help from those interventions. The resignation comes from recognizing that the move means some pretty significant changes, not all of which are welcome.

The biggest change, as we’ve mentioned before, is leaving behind the wonderful nurses and doctors at Pennsylvania Hospital. Right now it feels a bit surreal. In the face of the upcoming move and work and hanging out with the boy, what we wish for is a period of quiet where we could really think about and try to articulate what these people have meant to us. In reality, we likely won’t have that any time soon. So we’ll probably look for little ways to communicate what can’t be fully communicated in little ways, and count on the perceptiveness of these highly attuned people to “get” how grateful we are and how indebted we feel.

The other change involves a kind of settling in. That feels strange to say almost six months into this. But for much of this time we’ve been pretty focused on Javid advancing as quickly as possible through a number of stages of preemiehood, with the goal of getting him home as soon as could be.

In heading to CHOP, we’re most likely looking at a much slower, more extended process. It’s also one that very probably will include a tracheostomy. In our end-of-rotation chat with Dr. Wade, she told us that she doesn’t remember a child with anything like Javid’s constellation of issues who didn’t end up with a trach. So we’re working to accept that this will likely be part of his future. Again, it somehow becomes easier to accept if it means his survival.

Javid not making it through all this is another scenario that we’re trying not to run away from. Okay, that’s not really true—we often shy away skittishly from having to think or talk about it. But we’re trying to have our flights be fewer, and to become more courageous in facing the possibility and talking about it, between ourselves and with others. We’re finding in doing so that it’s not just we who have a hard time “going there.” Yesterday Tony talked about it with one of his colleagues at the health center where he spends part of his work week. Her response was to say “Oh no!” and literally walk away! Boy does that reaction make sense to us…. :-)

As has been the case at every stage of this process, however, the Teeny Tiny Round Mound of Rebound continues to prove himself stubbornly resilient, bouncing back time and again from what feels to us like the brink of disaster. In the words of the immortal Dick Vitale (it is NCAA Tournament time, after all), “he’s a diaper dandy baby!” Or was that, “he’s a diaper dandy, baby!” Anyway, we’re proud of our little son, and rooting for him to “make it to the dance.” Thanks for cheering along with us.

On a completely different note, if you check out our guestbook you’ll now find a new security measure before you can post a message. About two weeks ago the guestbook suddenly started getting spammed. Tony would take down the messages as soon as he saw them, but they just kept on coming. Apparently the page had been found by a “spam bot,” a computer program that fishes around on the Web looking for webpage forms to automatically fill in with spam messages.

Fortunately with some advice from a college friend (thanks Scott-o!) and a big assist from our cousin-in-law Michele Yoder, the guestbook now sports a “captcha,” a small graphic of letters and numbers that you need to read and type into the page. We hope this will let all of you meat-brained (no, we didn’t say meat-headed!) folk out there through with little bother, while foiling the cyberminds.

The weather is lovely here in Philadelphia. We hope wherever you are you’re taking advantage of the fact that Spring has now sprung!

 

March 19, 2007

Javid’s had several days of ups and downs. That’s meant a number of times when his oxygen support on the ventilator has had to be raised to 100 percent. He also had his pressure settings raised a bit.

Our ups and downs tend to shadow the Little Man’s. We try hard not to get anxious with every visit to 100 percent-ville, but it’s one of those things that’s much easier to talk about doing than to actually accomplish. We know we often put too much emphasis on that one number. But there’s something quite primal it sets off for both of us, an inner cry of “Up against the edge!” For all the coaching, pep talking, venting, distracting and leaning on others that we try, in the end we do just spend a lot of time feeling afraid.

“A child of five would understand this. Send someone to fetch a child of five.”

Groucho Marx

On Friday we had a long talk with Dr. Wade before she finished her rotation. Since then we also had good long conversations with Nurse Nicole (who’s in for a treat when she sees the menu Tony’s prepared for the next outing) and Dr. Sam Garber, who’s rotating back onto Javid’s case. Fortunately everyone is very accommodating when our recall is limited or distorted and we have to go back and ask all over again. That said, we feel like we’ve learned a lot, even if we’ve probably only absorbed about 1/4 of what we’ve heard.

For instance, Javid’s recurring problems with infection-causing bacteria in his lungs have not gone away. On Saturday morning he finished a 21-day cycle of intravenous antibiotics. They test periodic samples of his, well, they’d probably call it sputum or something, but essentially it’s his lung juice. (Sorry if you’re eating when you read this.) The bacteria in the samples register as sensitive to the drugs, but even after this megacycle of antibiotics they’re still fairly plentiful.

One suspicion is that his lungs may have so much junk in them that the drugs aren’t penetrating. So as of this weekend he’s been getting an aerosol antibiotic and another medicine to try to help him absorb the gunk out of his lungs into his body. He may also be headed toward a bronchoscopy, where they would put a scope down into his lungs to look around and suction out the nasty stuff. It would have two potential benefits. One is that suctioning out the lungs might open things up a bit. Even at the best of times Javid’s lungs are somewhat collapsed. The doctors are also wondering if they may find, tucked down into parts of the lungs they’re not currently able to access, other as-yet-to-be-identified bacteria. If so, they might be able to target those specific bugs with a subsequent round of antibiotics.

Frankly the bronchoscopy sounds wonderful to us—we’ve already started referring to it lovingly as “lungosuction.” However, to have it done Javid would need to be moved back to CHOP. So we’re steeling ourselves for a change of venue and, much more significantly, a change in his caregivers. The more real that becomes the stranger it feels. Just check out our guestbook from the weekend for a taste of how weird and wonderful Javid’s current nurses are. We love them and already pine for them whenever they’re off for several days at a time. So moving over to CHOP will have anxieties for us apart from Javid’s health.

We continue to be grateful to so many of you for investing so much of yourselves in us and our well-being. We’re also trying to be good about self-care, although that works better some times than others. Tony rides the bike his parents bought him when he was 13 all over town. Ana Lisa continues to “go to yogurt.” And we aren’t talking about Irish yoga, tempting as that may sound at times. The Lil Leprechaun says to wish you all a belated Happy St. Patty’s Day, by the way.

“Children are natural mimics who act like their parents despite every effort to teach them good manners.”

Anonymous

This week the Yoder clan will be zipping into town for our yearly holiday gathering. We planned it for March way back before Javid was born, thinking he would be home by now. But of course he’s too ornery to have waited to be born full-term, or to have gone ahead and quickly grown a bunch of healthy new lung tissue. We’re sad not to have everybody, including Javid, together in our house. But it’s still going to be fun to have the clan in town.

And maybe while they’re here they can help us convince their grandson and nephew to go ahead and get himself healthy.

 

March 15, 2007

Et tu machina aspiratia?

After almost a full week of Javid slowly creeping down on his oxygen support needs, we again heard the unwelcome words “100 percent” when we called in for a report this morning.

Poor Nurse Jill had to give us the word, which in the end boiled down to a polite fiction. She pretended to believe we were taking in the information she so helpfully provided, and we pretended we heard more than “100 percent” preceded and followed by the Peanuts TV special “adult voice.”

Apparently during the night some moisture or gunk or something coughed up by Wee Boy got into the sensor in his breathing tube, causing the ventilator to read incorrectly and provide him with more breaths than he needed. This was uncomfortable for him, so he got upset. And when he gets upset, as we’ve written about before, he needs more support, which can be more upsetting, which can create the need for more support, etc. etc. Vicious cycle. (Mean, nasty, vindictive cycle. Bad cycle. Insecure cycle that feels the need to mask its vulnerability by fronting the appearance of strength. Cycle that really, when you think about it, is to be pitied for its lack of ability to authentically connect with others. There there, poor cycle, let it go now. We’re all here for you.)

Okaaaay then. On we go.

The good news is this latest episode wasn’t really about anything going wrong with Javid. It was the ventilator. Of course, that’s not exactly comforting either, since he’s so reliant on that machine. As Tony wrote to a group of his college friends this morning, it just ain’t right to have to worry about stupid machine sensors messing up your kid.

But it’s all good now. By mid-morning his oxygen was down in the 80s and in the middle of the afternoon Jill sent us a text message saying “50 percent and so comfortable he’s drooling!” (Does it mean we’re hovering if the nurses feel they have to send us text messages? Naah, that’s just crazy talk.)

By the evening the offending machine and its co-conspirators had retreated to the Plains of Philippi and were preparing a last-ditch stand against the forces of Octavius and Mark Antony. Actually, what happened is the new-fangled ventilator with the color monitor and the musical alarms got swapped out for one of the oldies but goodies. Fewer bells and whistles, but … well, actually, there’s no obvious downside to that, is there? Fewer bells and whistles, AND fewer fancy but glitchy sensors. Yet another victory for the tortoise over the hare.

Javid did get another echocardiogram on Monday, and apparently Dr. Cardió looked at it on Tuesday or Wednesday. Or at least we heard rumors of his passing…. What we’ve heard so far is “basically the same, maybe just a little bit better.” We’re hoping to ask for more details tomorrow.

We’ve also heard a few rumblings about a possible move to CHOP for a trach evaluation. Amazing how that now doesn’t sound like the terrible news it once would have … although certainly scary. We don’t know much at this point, and are under the impression that it hasn’t actually reached the level of a plan yet. Undoubtedly it will depend a lot on how he does over the next weeks.

Leaving the Pennsylvania Hospital ICN after five-some months would be traumatic in and of itself. It’s hard to imagine not having Javid’s nurses to lean on, for one thing. We’re thinking of packing them up with his things and taking them along with us wherever we end up going next.

That’s seems reasonable, right?

 

March 11, 2007

Not much has really changed in the last days except our mood. Maybe it’s the warmer weather. Maybe it’s all the wonderfully warm words y’all have written in our Guestbook. Maybe it’s that we’ve now had a chance to hold him again after a two-week dry spell. Whatever the reason, we’re feeling in better spirits this weekend.

After spending a good bit of Wednesday and Thursday back up in the 90s and 100 on oxygen support, Javid has managed to come back down so that now he’s more often in the 60s and 70s than the 80s or 90s, and even hung out for a while in the high 50s this morning. He’s also tolerated (dare we hope enjoyed?) being held by us for two-hour-or-so stretches each of the last three days. Today he was completely sacked out the whole time, which is what they’re wishing for as much as possible of these days. Yesterday and the day before he woke up quite a bit, and seemed very aware of us. It’s fun to notice him noticing us noticing him noticing us … okay, we’ll stop. In any case, it’s fun.

His improvement over the last few days is likely due to some adjustments made by his doctor. He continues to get diuretics to keep fluid off of his lungs. Late in the week he also started getting a steroid—we don’t remember what it’s called but if he makes it through all this he may have to accept that any accomplishments in his life be followed by an asterix:

* used performance enhancing drugs

The purpose of the steroid, if we understand correctly, is to lessen swelling in his lungs. He’s had so much scarring, and such persistent infection in his poor airbags that Dr. Wade wanted to try this to see if it would help him any. We told her fine, but if we end up with a child who ripples with muscles, has tiny little testicles, and talks like Ahnold, then by golly “we’ll be back.” (Okay, we didn’t actually say that, but wouldn’t it have been funny if we had!)

Tomorrow he’s going to get another echocardiogram, although as Dr. Wade explained to us last week, it will only represent a snapshot of one moment, that may or may not accurately reflect his “normal” state. In other words, if he’s really relaxed he might end up looking better than he actually is, and vice versa. So we’re trying to get our heads and bodies (’cause the old adrenalin factor is certainly a part of this mix) a little more disconnected from the results of specific tests, or the ups and downs of a given day. We’re trying to emulate the tortoise, rather than the hare, in our approach—no easy task for Tony, especially, who both physically owns this t-shirt and it’s description of how he experiences the world. But we’re trying. We’re trying to pace ourselves, be gentle with ourselves, laugh, find balance. Ana Lisa even took in a couple of yoga classes, now and forevermore referred to in our house as “going to yogurt.”

It seems to be working a little. :-)

 

March 7, 2007

It’s like a jungle sometimes, it makes me wonder
How I keep from going under

Grandmaster Flash and the Furious Five, “The Message

Wow, this has been a truly exhausting couple of weeks. We’re finding that one after the other the indicators of stress and tiredness have come a’knockin’. So we’re alternately feeling lethargic and manic. Our patience is much thinner than usual. We’re skittish and avoidant. We spiral and “catastrophize.” We often feel overwhelmed. We’re VERY moody and have to work hard not to get snappy, even (especially?) with each other. And have we mentioned that we’re tired? Boy are we tired.

We mentioned in yesterday’s post that we’d had a sobering conversation with Javid’s doctor. Dr. Kelly Wade just rotated on to his case for the next several weeks. She’s usually over at Children’s Hospital, but occasionally comes over to Pennsylvania Hospital. We remembered each other from when Javid went to CHOP for his intestinal surgery—he had participated in a study that she’s been conducting. That’s our kid, always looking to contribute to the greater good. :-)

Anyway, the conversation was a hard one, but (probably!) ultimately an important one. While we much prefer conversations from which we walk away feeling “bucked up” (what a weird phrase), there’s something to be said for plain truth as well. Not that there aren’t times when we’d be happy to settle for a little truthiness.

So here’s the gist of the truth sans varnish. Wee Boy has a chance to make it, but the chance is relatively small. He’s in a very precarious place, and any of a number of challenges could come along to push his little body to a place where his caretakers and the machines can no longer support him.

Truth #2: The risks aren’t front-end loaded. In other words, even the best case scenario will more likely than not be a long, slow process, and there are real dangers to his survival at any number of stages scattered throughout the next two years or so.

The two things Javid has going for him at this time are that he is growing, and he did seem to have some positive response to the nitric oxide treatment. Growth is really the only possible route out of this mess.

Dr. Wade told us she didn’t expect to see any, even small, signs of improvement for several weeks, minimum. The best to hope for is equilibrium. What he needs is to rest, relax, stay calm, and grow.

With such a sunny shine to the forecast, can you blame us for wishing the truth were a bit more truthy? But how to retreat into what we “wish to be true” when we’re not even really sure what to hope for right now?

Today in the Philadelphia Inquirer one of the columnists interviewed a U.S. soldier recently returned from Afghanistan. One comment he made stuck with us: “(Courage is) not an absence of fear. That’s insanity. I was always scared. Courage is not letting the fear get the best of you.”

Here’s some truth: we’re scared. Is it getting the best of us at times? You betch’yer sweet bippy (another weird phrase).

And have we mentioned that we’re tired? Boy are we tired.

 

March 6, 2007

Hey everyone. Sorry it’s been a few days since we’ve updated. We hit a real wall this weekend in terms of our energy level. This story about describes our ability to function….

Javid is about the same. We had a long, pretty sobering conversation with his current doctor today, which we will write more about soon. For now, though, we’re grateful that he’s managed to hang out in the 60s and 70s on his oxygen support, with some unwelcome forays into the 80s, 90s and of course, sometimes, much as we hate it, 100.

By now the nurses are well aware how much it messes with us when he goes up to 100 percent on his oxygen support. Monday morning we called in and could only admire the skill with which Nurse Jill used every trick in the book not to have to tell us that he was, again, up at 100. After we hung up we agreed that it was important to recognize a true artist at work. :-)

We will write more soon. Thanks to all of you for thinking of us and caring for us.

p.s. Lil Boy’s flirting with 7 pounds! In a two-day period he put on 1/3 of his original birth weight. That’s just scary….

 

March 2, 2007

Motivated in part by the fear of getting our butts handed to us in a sling by Tony’s cousin Marcia, here’s another update.

Actually, in the last two days we had a combination of busyness and exhaustion catch up with us a bit. Javid’s had some ups and downs, but is generally hanging in. Tony, on the other hand, has caught a bit of a cold. As a result, all of our information about Javid is second-hand as well, since we’re trying to be extra careful right now not to expose him to any additional bugs.

We’ve still not heard from the cardiologist. Although we don’t really expect to hear anything different from him than from Dr. Gerdes, we’ve jokingly begun to talk about Waiting for Cardió (emphasis on the “o”):

Tony:

I hear nothing.

Ana Lisa:

Hsst! (They listen. Tony loses his balance, almost falls. He clutches the arm of Ana Lisa, who totters. They listen, huddled together.) Nor I.

Sighs of relief. They relax and separate.

Tony:
You gave me a fright.
Ana Lisa:
I thought it was he.
Tony:
Who?
Ana Lisa:
Cardió.
Tony:
Pah! The wind in the reeds.
Ana Lisa:
I could have sworn I heard shouts.
Tony:
And why would he shout?
Ana Lisa:
At his horse.

Silence.

Yesterday morning was the one somewhat tense time in the last few days, as Javid’s oxygen requirement again climbed to 100 percent for a while. It turned out he again had some congestion and maybe the beginnings of some collapsing in one part of his lungs. A few diuretics later, combined with some massaging of chest and back with a vibrator and he again came down into more comfortable (for the parents, since it’s all about us anyway) territory of 60ish percent. Although we were relieved, we fully plan to have a serious conversation with the Boy about the perils of brinkmanship.

He’s also packing on the ounces, weighing in at the moment around 6 lbs., 7 oz.! Who is this giant and what did he do, eat our baby?!? As Dr. Gerdes told us last week, growth is ultimately the best route out of the situation he finds himself in. So we’re very happy that the combination of Ana Lisa’s breast milk and high calorie formula seems to be acting like Miracle-GroTM. We’re crossing our fingers and toes (heck, we’d be crossing other people’s digits if they didn’t keep taking out restraining orders against us) that the new blood vessel growth in his lungs will keep apace of the rest of his body. Even though the heart is the current focus, it’s really mostly about the lungs right now.

We’re still in the process of orienting to the new reality created by last week’s diagnosis of pulmonary hypertension. The first shift is adjusting to what will likely be weeks (months?) of high ventilator settings, much reduced margin for error, and, if everything goes okay, a slooowwwww return to where we thought we were pre-diagnosis. The second shift is simply throwing out whatever range of possible homecoming dates we had concocted in our minds. That’s all up in the air at this point.

Although we, of course, don’t particularly like having to make these shifts, we’ll take them over the alternative! It’s great to be nine days post-finding out about the hypertension, and have him here, growing, eating, filling diapers and having nurses (instead of us!) empty said diapers, gradually expanding his awareness, and generally being a cute little Fighting Niblet.

Go Niblets!

 

February 28, 2007

We’ve still not heard this morning from the cardiologist, so we continue to operate on the hope that initial reports on yesterday’s echocardiogram hold true. Javid had what is for him right now a fine night, with a good “blood gas” (CO2 of 53!) this morning and oxygen saturation holding steady in the mid to high 90s. His high pressure support settings stayed the same, but they were able to wean his oxygen support down a bit to the mid 80s.

We’re finding that our pressures seem to be slowly settling, and our thought processes gradually returning to their “normal” state. Not that that’s anything to write home about….

Overheard this morning:

Ana Lisa, very seriously, “I’m anxious.”
Tony, concerned, “Really?”
Ana Lisa, “What if I hate the color of the upstairs bathroom?”
Both stare at each other for a long moment, then slowly dissolve into mirth…

Overseen and (unfortunately) overheard:

Tony cavorting around the kitchen singing “Celebration” upon discovering there were Grape-Nuts and he didn’t have to settle for Quinoa Flakes (blecchy!) for breakfast.

Truly this is a family with more than one small being focused mainly on creature comforts. Yesterday’s Hobbit quote (with thanks to Aunt Gloria for the reference) has had us wishing muchly just to snuggle down in a warm and dry hole in the ground instead of facing the scary journey before us.

How fortunate, then, to have so many of The Wise to guide our path, as well as such a strong Company of the solid and enduring, the bright-eyed and far-seeing, and the valiant and passionate even in the face of mortality. All we have to do is look to the Guestbook, to our e-mail inboxes or to our refrigerator (!) to be reminded of this, as well as to take in with joy all the other merry hobbits around us, joking and rhyming and enjoying good food and drink even in the very shadow of the mirky forest.

Thank you to all of you for your wisdom, strength and humor—you make even halflings feel stout of heart and full of stature. (And not a Wormtongue or a Sackville-Baggins among you. Truly a marvel.)

 

February 27, 2007

“Straight through the forest is your way now,” Gandalf said. “Don’t stray off the track!—if you do, it is a thousand to one you will never find it again and never get out of Mirkwood…”

“Do we really have to go through?” groaned the hobbit.

“Yes, you do!” said the wizard, “if you want to get to the other side. You must either go through or give up … And I am not going to allow you to back out now, Mr. Baggins….

“Stick to the forest-track, keep your spirits up, hope for the best, and with a tremendous slice of luck you will come out one day.”

J.R.R. Tolkien, The Hobbit.

We’re fresh off the phone with a report from Dr. Jeff Gerdes. The echocardiogram was done this morning, and although the cardiologist may not get a chance to look at it until tomorrow, Jeff told us there were some positive signs. Apparently what registered as a leaky valve last week looks to have tightened up some. Ironically, because the valve has sealed up some, it’s less possible to get a measure of the pressure inside the heart. However, the wall between the two chambers of the heart, which was bulging one direction (thus indicating greater pressure in the one side than the other) looks to have corrected itself somewhat.

We still have to wait for Dr. Ewing to give it the official imprimatur, so look for Tony’s fingernails to continue begging for mercy in the meantime. But we’re definitely finding ourselves more able to focus than yesterday.

We’ll post more when we know more, but for now we’re cautiously festive (i.e., streamers allowed—where would be we be without streamers—but no kazoos).

 

February 26, 2007

7 p.m.

Well saints n’ begorrah if the little laddy hain’t gone and sucker punched us with some good news!

We just got off the phone with Dr. Sam, and the EEG came back clean. While the test can’t entirely rule out that he did any seizing during the night, there were no signs of seizures while the test was done nor of any other electrical problems in his brain. (Tony suspects he often has electrical problems in his own brain, and doesn’t really understand what all the fuss is about.)

With his ventilator settings still quite high, and his first echocardiogram since being diagnosed with pulmonary hypertension scheduled for tomorrow, there’s clearly not much space to catch more than a celebratory breath. But hey, today’s boogie monster just got banished back to the anxiety closet. That’s worth at least one good cheer!

We can’t hear you…! :-)

11 a.m.

What one hand gives, the other hand seems quite bent set on snatching away!

As Dr. Abassi had hoped the night before, Javid seems to have caught up somewhat on his oxygen processing. As of mid-morning his oxygen support was down in the high 70s.

However, we received the daunting news this morning from Nurse Nicole that she had twice seen Lil Boy act in a way during the night that made her suspect he might be having seizures. So this morning the doctor ordered an EEG. Apparently we’ll find out the results sometime this afternoon.

We of course weren’t excited in the least to hear of another potential health risk. It’s hard to have a number of things seem to follow one after the other and not start thinking that we’re watching the beginning of a trend. We hope not.

 

February 25, 2007

8:30 p.m.

Javid is back up to very high settings again. As of 6:30 p.m. when we were in to visit, he was at 100 percent oxygen again. We’re very worried about him. While there we had a conversation with Dr. Abassi, the dear doctor who was his first neonatologist after his birth. She said what she thinks/hopes is happening is that it often takes the oxygen levels some time to catch up after the collapsed lung issue has been fixed. If that is indeed what is going on right now, she hopes his O2 levels will start coming down some time over night. Nurse Jill did a stellar job keeping up with his secretions today, but they are thick and abundant again and it’s pretty clear the infection is back—he’s been on antibiotics for three days so far.

We’re worried and trying desperately to distract ourselves, since all we can do is wait right now.

11 a.m.

Happy Birthday Tony! It’s his 39th today (yes, a year from 40!). So far, it’s been kind of a rough start, but we’re hoping the day gets better as it goes along….

So we had another scare this morning, when we called the hospital for our 8 a.m. check-in to find out that Javid had a rough night. Apparently, he was desatting quite a bit and his CO2 levels were too high, so early this morning they did a chest X-ray, which showed that part of his lung had collapsed. They turned up his pressures, Nurse Jill turned him on his side and tried to loosen up some secretions, and they were considering putting him back on the oscillator again if things didn’t look good at his 9 a.m. reading. Thankfully, when we called again at 9:30 AM, it sounded like his CO2 number was down, so the oscillator change is off the table for now. We’re hoping his O2 interventions can come down a little today from 78 percent. Saturday afternoon he got down as far as 58 percent for a while.

We suspect Javid didn’t just want all the attention on his daddy today! But, in honor of Tony (yes, this is AL writing) I’d just like to make it known that there is no one I’d rather go through a truly crap-a-licious situation than Tony, who’s kept me laughing through it all and somehow maintained his optimism through so much. Happy birthday, my dear….

 

February 24, 2007

Again the news is a bit toward the positive. Since yesterday he’s come down a couple of percentage points on his oxygen settings, and his carbon dioxide readings were the lowest they’ve been for a while, 68 percent. That’s still high for most of us humans, but his C02 levels have trended high for so long that his body has adjusted. So 68 percent is actually a pretty good result for him.

We had a good meeting yesterday with Dr. Jeff Gerdes, Nurse Jill and the social worker Debbie, who we’ve been hearing bragged up for a while but who we hadn’t had the chance to meet until yesterday because she’s been out on leave.

The general tone of the meeting was still a good deal of concern, but with some sense of optimism. We asked Tom what importance he attached to the lowered oxygen settings and he said that while they are not a definitive measure in any way, they are a good sign. Apparently when he walked in that morning and saw that the settings were in the 60s as opposed to the 90s, he arm-pumped an “all right!” :-) He did caution us that there’s no way to know ahead of time whether this will continue as a trend or not. And another piece of information he told us is that even if Javid is able to get through this critical stage, there’s a fairly wide range of possible recovery times from pulmonary hypertension, up to several months.

“The Woods” became the chosen analogy for the day, so we might as well use it here also. Javid is definitely not “out of the woods” with the pulmonary hypertension. And if he manages to get through those “woods” there are still others to navigate. We laughed (you know, that tension relief kind of laugh) in recognizing that “the woods” we lived in great anxiety of last week, such as Javid having to get a tracheostomy, suddenly feel like sun-lit meadow. Okay, now we’re getting carried away analogy-wise. But y’all get the idea. The fear that Javid will eventually have to get a trach, so close to the surface in the last number of weeks, has firmly lodged itself for the moment over in Anxiety for Another Day.

We found ourselves calming somewhat yesterday from the frenetic edginess of the previous days. Maybe we’re just beginning to adjust to the new terrain. But it certainly also helped to have some hope that the treatments may be having an impact. We’re trying not to flee into “it’ll all work out” denial (attractive as that sounds!). But we’re also choosing to indulge in some hope, and to stay mindful of how nice it is having this little boy right here right now. We also want you to know how touched we are by the ways so many of you have reached out to us this week. We’d love to respond to each of you individually, but please know how truly grateful we are.

“Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end.”

– Scott Adams

 

February 23, 2007

So we went to bed and woke up with news that seemed somewhat hopeful. At about 5:30 yesterday afternoon Javid started needing somewhat less oxygen support. As of this morning he is on 65 percent oxygen, compared to 95 to 100 percent the previous few days.

This was the first indication we had of a positive reaction to the treatment. What we don’t know yet is if it’s a trend. If it does end up being a trend, we also don’t know if the change will be fast enough. In our conversation with Javid’s cardiologist on Wednesday night, he described the treatment of Lil Boy’s pulmonary hypertension as a race.

We’ll likely be learning more as the next few days go by. Early this afternoon we have a meeting scheduled with Dr. Gerdes, so maybe we’ll come away with a clearer idea whether the treatment seems to be having the desired effect or not. We think we may hear that it’s too early to know.

Thanks to so many of you for your gestures of caring and support. We feel very held by all of you, and that’s wonderful.

 

February 22, 2007

The Big Bad now has a name: pulmonary hypertension. We met with the cardiologist, Dr. Ewing, and Dr. Tom Mollen last night and they explained to us that because of how hard his lungs have been working, the pressure on one side of his heart has been about the same as the pressure in his arms and legs. Since it’s only supposed to be about 1/4 of that, that side of the heart is enlarging.

The doctors have started giving him nitric oxide as well as the Viagra. The nitric oxide is to supplement what the body naturally produces, and the Viagra is to allow the body to use the nitric oxide efficiently. Or at least that’s our lay understanding of the process!

So apparently there are two important time frames. The next four or five days are extremely critical. It’s likely he will require a lot of support during that period. After that period has passed they should have some sense of whether or not he is responding to the treatments. Dr. Ewing let us know that the situation is very serious, with no way of knowing whether his body will be able to handle it. Dr. Mollen told us that one advantage is that they know the source of the hypertension. Apparently pulmonary hypertension in adults is often diagnosed very late, and not at a stage where it responds well to treatment. One upside is that Javid is young enough that he’ll still be growing lung tissue for quite a while. The downside is that lung tissue grows very slowly, and it may not happen fast enough.

If, and it sounds like at best we’re going to be hanging out in “if” territory for a while, Javid can make it through the five days and show some sign of improvement, the second time frame is an additional three to four weeks in which he would need to be stimulated very little, and hopefully his body could slowly readjust.

If, again if, he can make it through all of that, there are additional implications such as some increased likelihood of a tracheostomy. On the far end of this scary period it is probable that his heart would be able to recover with little long-term effect.

So the fears have a really clear focus, and it’s name is today, tomorrow, and the few days after that. It seems pretty clear that there’s very little margin for adjustment. They’re trying the one treatment that they think has a shot, but aren’t at all sure how it will go.

For the next little while, our emotional state will probably be most accurately described as: arrrrggh….

Arrrrrggh….

Thanks to all of you for your many kind words and thoughts. We greatly appreciate your accompaniment, from near or far.

 

February 21, 2007

Okay, so this is a familiar, entirely unwelcome, and extremely raw place we suddenly find ourselves back in.

Monday afternoon Javid’s ventilator needs started to rise rather quickly. He then had a pretty restless night.

Yesterday Dr. Gerdes told us that he wanted to change the ventilator tube, because it seemed to be too small and was letting air escape around it. They did that in the afternoon, and apparently the bigger tube went in pretty easily. We were hoping the new tube would help him quite a bit, and for a while it did seem to. But he again had a kind of rough night last night.

Today they did an echocardiogram. We have known for a while that Javid had some enlargement on one side of his heart. Apparently this is quite common in preemies, especially those with chronic lungs. Up until today whenever it was mentioned it was accompanied by a comment that the amount of enlargement was not of concern at that point. Today’s echo showed some further enlargement of his heart, enough to where Dr. Gerdes now wants to be careful about not stressing his heart out further.

So today Javid got started back on a couple of antibiotics, in case part of this is a reoccurrence of the infection. He also began a regimen of generic Viagra. (We hope for the day when we’ll feel up for cracking Viagra jokes, but today’s not that day.) Viagra has the effect of getting the smooth muscles that line artery walls to relax. When they relax, blood flow increases, relieving stress from the heart. Or at least that’s the hope with Javid.

We had the chance to sit down and talk some to Dr. Gerdes today. He is the head of the Intensive Care Nursery at Pennsylvania Hospital. It has also been our experience with him that he is a generally pretty reassuring and positive presence. In addition to relying on his medical knowledge, we’ve availed ourselves on several occasions of his calm and optimism for a little borrowed ego strength!

Today Dr. Gerdes told us he was was concerned about the changes in Javid’s support needs. We asked him if the concern included worry that Javid might not make it, and he said that while that’s always part of the equation with every preemie, this did raise his concern level somewhat. Some of the concern is related to how high his ventilator settings currently are and correspondingly how much less room there is to keep going up. He was very nice about it, and had other things to say about Javid’s general appearance of health and how he thought that factored in to the risk levels. But as you can imagine, we’re pretty scared right now. Different risks bring different degrees of fear, obviously, and it royally bites to find ourselves back to worrying about risk of death. We had hoped to leave that concern to the professionals. :-s

Mostly right now we just feel like curling up into a ball. We’re trying to give ourselves permission to do that some, to ask for alone time when we need it and for people time when that feels right. The amazing thing we find over and over is how attuned so many of you are to our flip-flopping moods and needs. We can’t tell you what a gift that is.

 

February 19, 2007

Hello all,

Sorry for the long space between updates again! We needed a little recovery time from the latest extubation attempt, but are feeling better now. We had a nice conversation on Friday night with Dr. Gerdes, who is taking Javid’s case for the next couple weeks. He seemed relatively unfazed by how long it is taking for Javid to get off the tube, and thinks Javid needs a little time to get bigger before we try again. He’s seen lots of babies with chronic lungs, and didn’t think we are at the point of the trach yet. Sounds like there are some different options and while that’s on the list, they have some things to try before that would happen. He and Dr. Garber, who’s had Javid the last several weeks, are going to powwow and figure out what direction they’ll go this week.

Other than that, Javid’s been doing good on the tube, with the settings starting to come down again. We found out he has another fracture in his right arm, again the result of fragile bones and possibly all the “handling” required searching for veins that can still accommodate IVs. His weight tends to fluctuate, but he weighed in last night at 5 pounds, 9 ounces!! He’s definitely looking bigger and more substantial, for which we are so grateful. And we think he likes Dr. Suess since the nurses tell us that he listens really intently whenever they turn on the recording of us reading about Sneeches and Loxes and Bartholomew Cubbins’ 500 hats.

We’ve been having nice bath times with him at night, with Nurse Patti there to cheer us on (and laugh at us) while we muddle through getting the boy clean through all the tubes. We are frankly quite impressed with ourselves and get excited for bath time now. Javid’s usually pretty alert right before or after bath, and then (sometimes) settles down very easily in our arms once he’s all re-diapered, dressed and wrapped up. There’s nothing more relaxing than a “Baby J” (as one of Ana Lisa’s co-workers calls him) all wrapped up and sleeping peacefully in our arms.

Anyhow, we’re not sure exactly what this week will bring for Javid, but will try and keep you updated. Thanks for sticking with us!

 

February 14, 2007

Just as Douglas Adams’ answer to the ultimate question of Life, the Universe, and Everything was 42, Javid’s “To Infinity … and Beyond!” turned out in this instance to be 95 1/2 hours. This morning at 6 a.m.—just a measly 30 minutes shy of four complete days—he wearily accepted back his ventilator tube.

The call from Dr. Garber at the hospital was not the happiest Valentine’s Day news we’ve ever received. But we’re encouraged that he was able to stay off longer this time, and shows obvious signs of growth and developing strength. And we’re grateful to all the wonderful people at Pennsylvania Hospital who supported him and rooted for him as he made this latest attempt. Thanks also to all of you for caring about him and about us as we’re going through this (rather torturously slow at times!) process.

Baby steps. (Sorry, it was just begging to be said.)

 

February 13, 2007

9:30 a.m.

Seventy-five hours, but not without some struggle. Javid seems to be getting more annoyed with the CPAP machine (no surprise—imagine have the exhaust end of a Shop-Vac strapped tightly to your nose). As he gets more annoyed, though, he tends to clench his body, which in turn makes it harder to breathe, frustrating him even more.

We’re hoping this is a hump he can get over, but are definitely in wait-and-see mode.

 

February 12, 2007

4:30 p.m.

Fifty-eight hours—a personal best! Now, à la Buzz Lightyear, “To Infinity … and Beyond!”

8:30 a.m.

Javid had a nice restful night. Fifty hours and counting off the ventilator…

February 11, 2007

6:30 p.m.

Thirty-six hours and counting!

February 10, 2007

Okay, the count begins again! At 6:30 this morning Nurse Patti pulled his tube, and 12 hours later he’s still tubeless.

The first few hours were pretty rocky. His oxygen saturation levels were low at various times during the night, so the immediate reason to pull the tube this morning was that they suspected he had a “tube booger.” Indeed, when they yanked it they apparently found it covered with grody phlegminess. Poor little boy!

Anyway, after losing the tube he got put on a nasal cannula for a while, since the last time he was extubated he was on a CPAP and fought against it as mightily as his little body would permit. The cannula is less bothersome, but also doesn’t provide as much pressurized support for his breathing. This morning even the cannula seemed to bug him, so when we went in early he was “desatting” quite a bit.

By mid-morning it was clear the cannula wasn’t cutting it, so Nurse Jill and Doctor Tom switched him back over to the CPAP. In a classic case of “well, well, well … it doesn’t seem so bad compared to something worse, does it now?” Javid apparently (we weren’t there at the time) welcomed the added support of the CPAP, and soon was “satting” much better. So well, indeed, that by the time we got backthinking we might help keep him calm by holding himhe was so zonked out we just let him be.

Since then Lil Boy has been chillin’, barely waking up even to say howdy and listen to the story Nana Lapp read to him when she and Pop Pop stopped by for an afternoon visit.

Tonight we were sitting and doing some figuring. As of today Javid is four months and two days old, and for all but four and half days of that he’s been on a ventilator of some sort. That means if he could stay off for good this time it would have been essentially four months on the tube, a nice round number. Four months would be easy to remember, a good thing for Tony, whose math skillz have deteriorated sadly since back in the day.

Anyway, please root for our little boy to stay off the tube, for his own good and for the sake of Tony’s flagging brain cells!

 

February 4, 2007

So far so good. Since having to go back on the tube on Wednesday, Javid has been able to tolerate lowered settings on the ventilator. He seems to be having a good weekend, with the exception of a sore derrière after a reaction to some extra calories they put in his breast milk to try and bulk him up.

Tony had a very helpful conversation with Doctor Sam Garber on Friday, and we were encouraged to hear that they may try to extubate Javid again as early as Sunday (today!) or Monday, depending on how he does.

Doctor Sam was generally pleased with how Javid did on both his extubations. The two things that appear to have been holding Javid up from getting off the vent have been not enough strength and secretions in his lungs. Both apparently often come with the territory of chronic lungs on a small 24-weeker.

They have a couple of ideas about how to address both in the next extubation. One possibility is to alternate between the CPAPwhich gives Javid more support but which he seems to HATE because it’s uncomfortable, causing him to waste a lot of energy crying and tensing upand the high flow nasal cannula, which provides less support but doesn’t irritate him nearly as much.

During the last try, giving him diuretics seemed to really help get the fluid off his lungs, so they are thinking of ways to do that while balancing the problem that they can also stress his system some and flush good stuff out of him.

It’s all a balancing act, with pros and cons for every intervention. But we’re so grateful to have folks who know what they’re doing! So … this week you may be able to carry on with the chanting for Javid as he continues to attempt life without Señor Tubo.

 

February 1, 2007

Javid’s been back on the ventilator for a little over a day now. For some reason it’s not nearly as much fun to count the passing time with the tube in as when it’s out.

We didn’t get a chance to talk to the doctor today, so we don’t know for sure what “the plan” is at the moment. Maybe we’ll know more after tomorrow. For today, it was nice to see him doing well when we went in.

 

January 31, 2007

10:30 p.m.

At 9 tonight Lil Boy got a new tube. We’re bummed, of course, but glad that he’s breathing easier. He made it 57 1/2 hours this time, almost a full day more than the last attempt.

He’s resting easily in the wake of all the hubbub, so we’re now going to go try to do the same.

1:30 p.m.

Fifty hours and counting….

8 a.m.

As of this morning, Javid is still off the breathing tube. It’s a new record!

Yesterday we were with him for most of the afternoon. Ana Lisa was still coming down from being sick, so Tony got to be the holder yet again. Not that he’s rubbing it in anyone’s face or anything….

For most of the afternoon things were pretty calm, but around 4 p.m. Lil Boy got kind of upset. (”Yep, missing his mom,” some wiseacre comments knowingly from the peanut gallery.) The challenge with him getting upset is that he tends to tense up quite a bit, including his lung muscle (”connected to his … heart muscle, the heart muscle connected to his … stomach muscle, the stomach muscle connected to the … fact that his parents are social workers who have only the vaguest concept of how the human body is put together“).

So clamping down like he did yesterday meant that it got harder for him to breathe, which then seemed to upset him more and make him tense up yet further. Fortunately Nurse Caryn, Doctor Tom and Respirator Therapist Bill were there to coach and coax him through the “episode,” all the while lending ego strength to the anxious ‘rents. An hour later we were all much improved.

One fun thing we haven’t got to witness yet, but have heard about, is the Little Swinger getting to hang out in what we’ve always referred to (admiringly) as a “lobotomizer.” We are, of course, talking about something like this:

Apparently if he can hang on CPAP, he’ll be considered licensed to drive one of these little honeys. Sweet.

The other news from yesterday was that he made it through another week without needing laser surgery. The ophthalmologist even declared one of his eyes a little improved. We’re still hoping he’ll be able to permanently dodge this particular bull… er … beam. So that was great news.

 

January 30, 2007

Twenty-four hours and counting….

1…2…3. Breathe, Javid, breathe!

 

January 29, 2007

The latest:

Javid’s tube was successfully removed again at 11:30 a.m. today, with Tony watching rather squeamishly. He (Javid, not Tony, who eventually pulled it together) has been on a CPAP machine since then, and while his oxygen levels and heart rate stayed pretty stable, he let his fury be known by crying most of the afternoon.

We’ve been told that sometimes bigger babies (how exciting that he’s now considered a bigger baby!) can be bugged by the CPAP gear. But it sounds like the valiant Nurse Jill (and othersthey’re just passing him all around!) ended up holding him much of the afternoon and finally got him calmed down around 4:30ish. By the time Ana Lisa came in at 5:30 p.m., he was peacefully sleeping. (When all this is over, we’re seriously taking you guys home with us…)

So the little Elephant Boy is on relatively high intervention levels on the machine, but looking good as of 8:30 p.m. They will be watching to make sure he does not have to struggle a lot to breathe, which would be a reason to bring the tube back again (spurn the thought … ptoi, ptoi). So, so far so good. Ten hours and counting…!!!

 

January 28, 2007

Quick update:

Javid is back down on his vent settings and they are going to try and extubate him again tomorrow morning. He (and we!) could use all the positive vibes you can send this way for the next couple of days.

We are of course very much hoping he can keep that durn tube out this time … while also trying to keep reminding ourselves that this is a process that may or may not include multiple attempts at getting him off of the respirator.

Anyway, we’ll try to keep posting updates during the week. Thanks for all your love, thoughts, prayers, cards.

Here’s to a tube-free week, unless of course they’re of the Internet variety.

 

January 23, 2007

10:30 p.m.

Woo frickin’ hoo! The ophthalmologist proclaimed Javid’s eyes “boring” again today, and said there was no immediate need for laser surgery. He also said that because Javid is now full term, it is still possible but becomes less likely that he will need the surgery.

We’re so happy we could pee our pants (just like the boy).

Okay, it’s really time for bed!

2 p.m.

Hey, in an alternate universe (which Tony firmly believes exists, by the way) this would have been Javid’s official due date! Maybe it’s fitting, then, that this short update will mostly be focused on what’s pending or, um … due.

(For anyone who just groaned, you might want to consider yourself fortunate not to have been subjected to another possible word play, connecting the words “due” and “dooky.” Javid has, after all, certainly not had any difficulties in that department recently. Considering where he was at the end of November, we’re very grateful that his digestive system seems to be ingesting and excreting so efficiently. Especially ’cause, as we understand they say in the medical profession (or a reasonable facsimile thereof), “Our number one test is your number two!” This became the rueful mantra of Mama Kanga last night when little Roo started off with the infant equivalent of a dutch oven (Tony, puffed up with pride: “That’s m’boy!”) then proceeded to bust a bomb right through his diaper onto her shirt and stomach!)

Short update. Yah. Okay, so we’re “celebrating” Javid’s original due date by finding out whether he needs laser surgery for his eyes. Apparently the ophthalmologist last week said it looked likely. He or one of his colleagues is coming back today for a follow-up exam, and our understanding is that the surgery could happen either today or tomorrow. Obviously we hope for him not to need the surgery. If he does, however, it’s wonderful to have it as an option.

In anticipation of this possible surgery, which would have required putting the boy back on a breathing tube anyway, there have been no further efforts to extubate him since last week. He’s still not back to where he was on the ventilator settings before his last attempt, but his lung secretions have lessened since Sunday when he was put back on antibiotics. We’ve been working to ratchet our expectations back to a slower pace, recognizing that he is indeed making advances. Just not as quickly as we would wish! :-s

Thanks again to all of you who have written in to the guestbook, sent us e-mails, cooked for us, called us, and generally wrapped us in your warm regard. You all deserve big, fat sloppy wet kisses and we plan to lay them on you whenever we get the chance, regardless of how you may try to squirm away.

 

January 20, 2007

Hi all,

So it seems we’ve been on the down swing of the roller coaster since Thursday. (Hey wait, isn’t that supposed to be the fun part? What’s wrong with this picture?) Mr. Breathing Tube is back. It sounds like Javid’s poor little body just got tired out from slugging through breathing around all the secretions. He was much happier back on the vent, for which we are grateful. (Okay bud, we’ll take you back, but just for NOW!) On the other hand, the nurses and docs have told us that is not unexpected and Javid did a great job being off for 36 hours.

Given that he may need laser eye surgery this Tuesday, they decided another attempt to banish El Tubo wouldn’t likely happen until the end of this week or into the next at the earliest.

Today, then, we found out Javid has yet another infection. Yes, it’s pseudo-jerkface-nastypants (and although this may surprise you, that is indeed the technical term), together with one of his buddies causing Javid to have tons of secretions. This of course makes his breathing more difficult and means higher settings on the ventilator.

This morning they threw him on two antibiotics. We hope they’ll start taking effect quickly. The good news—as the nurse practitioner reminded us today—is that as long as the Big Bad is bacterial they can treat it (as opposed to viral, which they just have to wait out).

In other more sobering news, we found out Thursday that a brain scan showed a slightly larger space between Javid’s skull and brain than normal. This may mean nothing, but it could be correlated with higher risk of developmental delays ranging from the very serious to the barely perceptible. The most difficult piece of this is that there will be no way of knowing much before about a year. So, while we were aware that there are always developmental risks for preemies born as early and small as Javid, it became more real for us this week.

The idea of waiting a year or more to know much feels like Chinese water torture, but we’re trying to remind ourselves to take things one day at a time … instead of tormenting ourselves by creating vivid mental inventories of all the horrific possibilities. (One of us has just a bit more of a tendency to do this than the other, as some of you can imagine or know from first-hand experience). We’ve noticed a propensity for frequent meltdowns when we forget the day-at-a-time thing—really not helpful. On the other hand, Nurse Patti kindly reminded us that Einstein had a small brain. Hey, we’ll take it!

 

January 18, 2007

And how quickly the mood doth shift. We just got off the phone with the hospital and Javid, after valiantly plugging away for about 36 hours, had to go back on the ventilator tonight. We’re bumming, of course. It was obvious today when we were there that all the nurses and docs were very happy for him and for us. So were we! It was great to be able to look at his face without the tube getting in the way.

It does sound like he’s much more comfortable now, which we’re happy about. And we’re also glad that Grandparents Yoder and Pop Pop Lapp all got to see him today off the tube.

Now we just have to adjust our expectations a bit. Which, coming on the heels of irrational exuberance, doesn’t make for a very cheery Mama and Papa Bear tonight. Tempted to growl and grumble at the world comes closer to describing the mood! Ah well, if Baby Cub can relax and get some rest, maybe we should follow his lead.

 

January 17, 2007

Three cheers for Javid and the Pennsylvania Hospital staff! After a couple of doses of steroids, at about 9 a.m. this morning the fabulous hospital staff successfully managed to rid him of the confines of his breathing tube!!! As of 8 p.m. tonight he was still managing to maintain his oxygen levels on just a high flow nasal cannula.

Javid has lately been showing signs that he’s ready for the relationship with Señor Tubo to be over. He first tried the, “it’s not you, it’s me” line, but Mr. T didn’t seem to be too big on indirect communication. So in the last couple days he’s been yanking away, grabbing at it, tonguing it, trying to cough it out, etc. And today it seemed to get the message, at least for now!

We managed to get in to celebrate with him for a short time this morning. It was overwhelming to see his entire little face with only a bit of tape on it, and him sucking away at his pacifier! The kid has some serious jaw muscles, which is starting to make Ana Lisa a little nervous!

Anyway, this feels like a momentous step, even though we recognize that staying off the tube might be a struggle at first, and going back on the ventilator isn’t out of the question if he has trouble. In the meantime we are celebrating his success, which gives the Pseudomonas goobers less room to hide and his poor little lungs and throat time to heal.

All of this is helping us deal with the other bit of news from yesterday. He had his weekly eye exam and though the message was cryptic, the ophthalmologist indicated that it’s pretty likely Javid will need the laser surgery next week. He said he was going to bring his laser along with him to next week’s appointment … okay, not so cryptic … that was our denial speaking. The bad news about that is that it would require him to go back on a ventilator again. The good news is that it sounds like once babies are off and have to go back on just for the surgery, they often are able to extubate again after only a couple of days. We will keep you posted.

In the meantime, send Javid good lung energy for the next couple days so he can stay strong off the ventilator! And, did we sufficiently thank the staff at PA hospital for all their hard work and dedication? It’s not even possible. Y’all rock our socks.

 

January 14, 2007

Time for an update! This has in general been a good week for Javid and for us. He’s been creeping slowly down on his ventilator settings, to the point where there is serious talk about removing his breathing tube and trying to help him make the transition to a less invasive form of breathing support, such as CPAP or a nasal cannula.

Javid jumped the gun a bit by pulling out his tube all by himself Monday night. We’ve been learning that this happens, and that sometimes it’s not a bad thing in that it can provide an opportunity for his caregivers to see how he would do on other breathing support. Indeed certain unnamed (you know who you are! :-) ) nurses have been very unsubtly rooting for him to “get that thing on out of there.”

So anyway, after his spur-of-the-moment extubation Javid spent about 45 minutes on CPAP, before having to get a new tube. We were disappointed, of course, that he had to go back on the ventilator. But we’re excited that he seems to be getting closer. The doctors think he has some swelling in the upper part of his throat, common after such a long time on the tube. So as part of the attempt to get him off of the ventilator, he will likely be getting some steroids this week to make the swelling go down.

Another thing we’re watching for is any developments in his on-going tango with the pseudomonas bacterium. Pseudomonas psucks; have we mentioned that already? On Thursday night Javid completed 10 days of pretty hefty antibiotics, which appeared to help him greatly. Hi pattern over the last months, however, has been to do great on antibiotics, then about two days after the treatment ends to start showing new signs of infection. So while the doctors would like him to have a break from the antibiotics, it will depend on how he does now that they’re stopped.

What else? Well, how ’bout this: Lil boy now weighs 4 lbs. 3 oz.! Not too shabby. He’s continuing to schlurp down hefty quantities of Ana Lisa’s milk, which is great because we’ve got our freezer and a neighbor’s jammed with the stuff. Another exciting element of the move to less breathing support is the opportunity to get him started on breast feeding. We’ve heard that this can be challenging with babies who have been intubated for so long, but also that the Pennsylvania Hospital ICN has had good success with getting it to happen. No disrespect to the pumpalump, but Ana Lisa wouldn’t mind having a little space in their togetherness. She’s looking forward to breastfeeding, and we’re hoping Javid is too.

It sounds unlikely that Javid will be coming home by his due date, January 23. We’re hoping it’s not too much longer after that, although we of course want him to come home when he’s ready. Frankly, we can use a little more time to get the house together. Right now there’s a huge hole between our first and second floors, waiting to be filled by a stairway.

Before and after
(plus a short video for the truly curious)

We were hoping to have that major project completed before Christmas, but our wonderful City of Brotherly Love took its good old time approving the permit. Fortunately the project is moving along quickly now, and soon we’ll be adding two bedrooms, a bath and an office to our living space. We’re having a hard time wrapping our heads around the idea of such a humungous home. But Tony is determined to show that with a home office he can actually keep his papers in some semblance of order. (If our child grows up a compulsively reactive neat freak, we’ll have some idea of how that all panned out.)

 

January 7, 2007

Sorry for the long gap between updates. Tony’s computer, from which we do all of our web page updating, seems to have entered it’s adolescent years and has been acting somewhat oppositional. We’re been debating whether to view this shift as a “necessary pruning to make way for the more efficient information-processing” of adulthood … or a sign that it’s time to upgrade. For now we’re stumbling along.

Javid has had a wonderful couple of days. The new antibiotic he started getting this week (which we’re still referring to in lay language as “Pippri-something-or-other”) seems to have kicked some pseudomonas tushie for the meantime. So Javid has been hanging out for the last two to three days in the 30s on his oxygen setting and doing quite well otherwise. He’s still got plenty of nasty secretions, possibly due just to the fact of having a tube down his throat for the 92nd day! He’s now 13 weeks old, or 37 weeks gestational age, and around 3 pounds 13 ounces. That’s 4 times his birth weight!

Now the big goal is to get him off the tube, which it seems will require some good timing on the part of the docs so that nasty Mr. P or some other evil infection doesn’t come along to set things back again. It’s looking pretty likely at this point that he’ll need to come home at least on oxygen, but we’re really hoping to avoid the tracheotomy that he could need if he still needs support of a ventilator.

So us, we’ve been loving the kangaroo role … though Ana Lisa’s been having a hard time accepting the days it is not her turn to kangaroo. She’s been dropping “subtle” comments like, “Tony, you look tired, are you sure you’re up for kangarooing? You know, if not I could take your turn for you, so you could get some rest.”

So far that’s been completely ineffective. Hmmmm, what other little tricks could she come up with? Any ideas, people?

 

January 2, 2007

Happy New Year everyone!

At the request/demand of certain nurses who are supposed to be relaxing on their days off, we are doing an update NOW. :-)

So, since Javid managed to get to a pretty stable place on his new-fangled ventilator last week, we got to start kangarooing him again. It’s been amazing to be able to hold him and have him occasionally gaze up into our eyes wondering whose huge face is staring down at him. We’ve been managing to share the kangaroo time, each of us getting a turn every other day. However, Ana Lisa would like it to be known that she holds the record on uninterrupted kangarooing at 2 hours, 5 minutes. Yes, it’s true, we are incredibly petty—keeps our minds occupied….

As you can see in the photos, he’s been looking like he used a little too much “tan in a can” of late, so they had to put him under the bilirubin lights again on Sunday. As of tonight, he’s still Little Boy Blue until he gets his bili levels down.

After a great day yesterday (O2 in the 30s!), today Javid started creeping up on his support needs again and having thicker, yellower secretions. He was up to 60-something on the O2 and 26 on his pressure when we came in, which means he needed more support to be able to breathe well. They changed his tube and suctioned him out and he seemed to be responding better tonight. They are starting him on yet another antibiotic—something called Pippri-something-or-other, which apparently is used quite rarely at Pennsylvania Hospital but more often at CHOP. Doctor Gollub told us tonight that they are bringing out the big guns to go after the pseudomonas, since it seems to be pretty nasty and persistent in Javid’s case. We are of course concerned about the infection not going away and have entertained all manner of scary thoughts like infections mutating and becoming resistant to the antibiotics. At the same time, we know they are doing all they can and working with CHOP infectious disease folks to try and lick this thing.

In case we didn’t mention it before, we REALLY hate pseudomonas. Really. It’s a very mean, stupid, bacterium and we’re sorry if that sounds harsh but it’s just how we feel.…

 

December 27, 2006

After what felt like a rather restful day yesterday, today began with a bit of a start with an early morning call from Nurse Patti (who, by the way, if you’re going to have to get a call from the hospital with potentially scary news about your child, we highly recommend!). During the night Javid had thick and plentiful lung secretions, and eventually his carbon dioxide levels started rising. There was discussion about whether to move him back to the oscillator, but eventually they decided to replace his breathing tube. In the process of doing so (and informing us of this was the reason for Patti’s call), his heart rate dropped to the point where they needed to do chest compressions on him for a short while. After the reintubation, however, his heart rate went right back up, and by morning time he was resting easily.

Having watched too many corny medical shows (please don’t ask us to name them, we’re too embarrassed), chest compressions sounded scary. But Patti assured us (about four times in the one conversation … thanks for making sure it actually registered, Patti! :-) ) that there’s nothing wrong with Javid’s heart, he just needed some support through the procedure.

He also got put back on antibiotics, which hopefully will help to clear up the lung secretions. We imagine that if he was bigger and didn’t have a breathing tube in him, he’d be hacking and wheezing with the pneumonia right now. As it is, his nurses are needing to work hard to keep him breathing clearly. Fortunately they seem to be managing so far!

The positive piece of all this is that he’s now been on the conventional ventilator for two days, and so far seems to be tolerating it pretty well. While aware that he may need to be switched back to the oscillator at some point, we’re happy to see that he seems to have gotten stronger since the last time he made the switch.

Another bit of relatively good news we got was from his fourth eye exam yesterday. He’s apparently right where he was the week before when the ophthalmologist pronounced his eyes “boring.” Although his eyes haven’t improved, not getting worse at this stage is a good thing and may be an indicator that his eyes will eventually correct themselves.

A rather surreal thing we learned tonight was that an X-ray detected signs of healing in his femur bone, meaning that at some point in the last days or weeks he fractured his femur. Very strange to hear that our little preemie son had a broken leg! But apparently this is common, especially in kids who have gone a long time without breast milk, which contains more calcium than the nutrient solution he was getting before. The doc told us that technically he has rickets—once again, common in preemies and a problem that generally fixes itself on its own. Yay for breast milk!

Supposedly the break is already healing, and we shouldn’t worry. Fortunately we never worry….

We were in this evening with Tony’s siblings, and Javid looked great. He was resting very comfortably, and all of his settings were fine. While it may be that he’s already learned to put his best face forward for family (!), we were encouraged to see him looking so good, and even sporting a cute yellow shirt.

 

December 26, 2006

 

Quick morning update: Javid seems to be doing better this morning. They gave him a new breathing tube last night, and switched him from the oscillator to a conventional ventilator. As of this morning he seemed to be liking the switch, breathing more easily and not having as much problem with secretions.

The other change is to the way he’s being fed—as he was apparently developing a little reflux. Up until now he’s been getting his milk through a tube into his stomach from an open syringe hung above him. Gravity emptied the bottle into his belly, usually over about 10 minutes. Last night he got switched to a pump system that feeds him more gradually, apparently taking up to an hour for each feed.

Who knows, maybe he’ll develop better table manners than his father, whose face appears in the dictionary under the definition “inhaler.”

Joy shared, increased!

 

December 25, 2006

Merry Christmas everyone! Just a quick update about Javid. He completed his 7-day run of antibiotics yesterday for the pneumonia, and today it seems he has pneumonia again (or still has it).

His O2 intervention levels went pretty high today, which is not a great sign. It seems clear at this point that he has chronic lung disease, or bronchopulmonary dysplasia (BPD), which from what we’re getting indicates that the machines he’s been on for so long have damaged his lungs, which can happen. It also means that fixing it can be slow.

The good news is that lung tissue continues to grow up until about age 7, and that kids who get BPD can get rid of it by age 2 or 3 if it’s not too severe. The catch-22 right now is that the longer he’s on the ventilator (which he seems to need right now to keep his lungs working), the harder it is to get rid of things like pneumonia and other infections. Having the tube in him makes it easier for these things to sit around and fester but right now he needs it to keep his breathing on track. There’s talk of trying him on the conventional ventilator again sometime in the relatively near future, but he’d have to improve (meaning lower) his oscillator settings for that to happen.

So, it’s been kind of a rough X-mas day for us and for him, though we’re so glad his nurses and docs are taking such good care of him.

Keep his little lungs in your thoughts (and if you’ve got extra good vibes, our mental health too! :-{ ) We’re feelin’ pretty blue.

Best of holiday wishes to all of you and thank you for thinking of us on this roller coaster ride. Like Spider Robinson said, “Pain shared is lessened; joy shared, increased.”

 

December 20, 2006

Javid had his third eye exam yesterday, and the results were BORRRRRRIIINNNNNNNGGGG! Apparently that’s our ophthalmologist’s standard joke for when he examines a patient and finds no problem, or at least no worsening of an existing problem. We comforted ourselves at this terrible affront to the dignity of our son’s eyesight with the reminder that the “affronter” comes from a branch of medicine apparently suffering from diarrhea of the consonants. Honestly, just how many h’s and l’s does a word really need? “Ophthalmology.” (Oh great, now I’ve sprayed all over my clean shirt.)

:-)

Silly pre-morning coffee meanderings aside, we were heartened to hear that at least for now Javid’s eyes are, if by no means in great shape, at least not deteriorating yet to the point of needing laser surgery. So that’s officially in the category of “worry for another day.”

On the pneumonia front there is much that sounds like good news. Since being switched to the new antibiotic on Sunday, Javid’s lungs seem to be headed in a positive direction. The color of the secretions in his lungs has improved, and little by little he’s creeping back down on the ventilator settings. The rumblings we’re hearing at Pennsylvania Hospital are that once he seems to have recovered pretty well from the infection, they’ll consider taking another shot at changing his breathing support, either to the conventional ventilator or to a CPAP machine. We’re eager for him to make the switch, because either would allow us to hold him. But the idea of him no longer having a tube down his throat, as would happen if he can successfully transition to CPAP, is really exciting. Not to mention that it apparently looks like scuba diving gear, which might herald the birth of a whole new line of parental musings about preemie recreation. He is, after all, the nephew of an uncle who once avowed a hankering to organize and participate in the first Guillain-Barré Olympics. With such quirky genes, we suspect Javid might jump at the chance to test his mettle competing with other preemies.

Hmm. Just how much deprogramming is this child eventually going to need?

p.s. Hippo Boy weighed in last night at 3 lbs. 12 oz.!

 

December 17, 2006

Here’s the good news:

  1. Javid has been steadily increasing his intake of Ana Lisa’s breast milk.
  2. He’s pooping up a storm (sorry nurses!).
  3. He’s tolerating lower and lower settings on the oscillating ventilator, a sign that his lungs are improving.
  4. They are estimating his weight at around 3 pounds 5 oz or so! He’s HUGE!
  5. We found out tonight that Nurse Nicole is a Reiki master and has occasionally been doing Reiki on Javid … thanks Nicole, that makes us feel so good!

Here’s the other-than-good news:

  1. He’s got an infection in his lungs again (really the same one he’s had recurrently since he was born)
  2. The infection was resistant to the antibiotic they put him on initially, so they had to switch him to a new one today.
  3. They tried him on the conventional ventilator again today, so we got ourselves all excited about kangaroo care again tonight. But then they had to switch him back to the oscillator since the infection gave him lots of lung “goobers” (or secretions as the more “eddycated” might say), making the breathing difficult. So our hopes were dashed.
  4. Eye exam coming up on Tuesday.

OK, one more good thing is that, if we may say so ourselves, he’s quite the handsome little guy. Did you see that muscle in his arm?

 

December 14, 2006

Javid is back at Pennsylvania Hospital! We are so pleased and relieved to be “home” again. When we met with the CHOP doctor yesterday morning, the first words out of her mouth were, “Javid’s doing so well, that we are going to send him back to Pennsylvania Hospital!” That was the best news we’d heard in a while. As of tonight at 9 p.m., he is up to 14 cc’s of breast milk every three hours and so far doing well on it, which is great news for the belly issues. It was wonderful to get back to Pennsy and see Nurse Jill and Nurse Patti, and to hear how excited they were about his progress and how “good he looks!” We really missed the warm and encouraging environment at Pennsylvania Hospital, and the fabulous staff who so clearly care about Javid.

Of course every time we’re flying high something comes along and knocks us on our tailbone. Yesterday when we asked about Javid’s respiratory health, the CHOP doctor said that he has very sick lungs—stiff and undeveloped. We’ve been hearing words like “chronic lung disease,” from nurses and something called Bronchopulmonary Dysplasia (BPD). BPD could apparently make it difficult for him to get off the ventilator, and take a while (even post discharge) for him to breathe on his own, fight infection, etc. At the same time, as the doc told us, “Javid has surprised us many times before!”

The other sobering news is that he was diagnosed on Tuesday by the CHOP ophthalmologist with Retinopathy of Prematurity, which is apparently a somewhat common eye problem in preemies in which the blood vessels in the eye develop abnormally. If untreated it can (emphasis on can, not does, because it sometime resolves itself without intervention) advance to the point at which the retina detaches, causing blindness. We were warned that he could need laser eye surgery for this as soon as next week, which scares us of course, but which we also understand is performed quite regularly and often with good effect. So we are trying to gear ourselves up for that possibility.

A million thanks for continuing to keep Javid and us in your thoughts. We’ll try to keep the updates coming and not hold ourselves to making them this long every time!

 

December 8, 2006

Javid was born two months ago today! There’s something surreal about writing that, since the timeframe both seems like forever and just a snap of the fingers. We’ve been told that this doubled-up sense of time, as being both endless and fleeting, is typical of parenthood in general. So now we know what we have to look forward to for the rest of our lives… :-)

With a few bumps along the way, Javid has had a generally good week. As we were warned would happen, he swelled up in the wake of the surgery (see pictures from December 3). We were very glad to know ahead of time that this would happen, because boy did it ever happen. The poor kid looked like Violet Beauregarde, sans the blueberry coloring. Even though the boy has now effectively been “juiced,” we do hope he learned his lesson:

Oompa Loompa doom-pa-dee-do
I have another puzzle for you
Oompa Loompa doom-pa-da-dee
If you are wise, you’ll listen to me

Gum chewing’s fine when it’s once in a while
It stops you from smoking and brightens your smile
But it’s repulsive, revolting, and wrong
Chewing and chewing all day long

The way that a cow does

Oompa Loompa doom-pa-dee-da
Given good manners, you will go far
You will live in happiness too
Like the Oompa Loompa doom-pa-dee-do

Notwithstanding Roald Dahl’s backhanded slap at cows, these are certainly words to live by.

So now we’re all in a holding pattern, awaiting the rebound of Javid’s digestive system after surgery. The next big milestone is (hopefully) getting him introduced and firmly established on Ana Lisa’s breast milk. The two previous attempts have been foiled by drainage through the intestinal hole that has now been fixed. We have great hopes that the third time will be the charm, and that Javid will be able to start benefiting from all the goodies contained in what Ana Lisa has so slavishly produced over the last two months.

We were told that it would probably take 10-14 days for Javid’s digestive system to be ready to start reintroducing breast milk. Today is day nine. They’ve told us they’re starting to hear faint rumblings in his stomach and bowels, so he seems to be headed in the right direction. Even when they begin they’ll be starting over from scratch. In the first days they’ll give him such miniscule amounts it won’t really register for him nutritionally. The point is to “prime the pump”—to get his stomach and bowels used to the idea of processing something. Then, if it’s similar to the process used when he was at Pennsylvania Hospital, they’ll very gradually up the frequency with which he gets fed the small amount, and eventually start increasing the quantity. If his body shows that he’s handling things (read: good lung and heart action, but most critically, pooping!) they’ll keep upping the amounts until he’s only being fed that way.

Besides all the nutritional advantages of breast milk, getting him on “full feeds” would mean one less needle into his poor abused veins, and consequently one less potential route for infectious material to enter his body. Not to mention that our freezer and our neighbors’ freezer are getting pretty full of bottles!

So today the sun is shining. We know there are other challenges down the road (eventually weening him off ventilator support, checking the development of his eyesight, etc.) But right now we’re feeling happy that our little son seems to have such a resilient body. We’re grateful to all of you who have been so caring of us and of him. And of course we have a debt that can never be repaid to the wonderful nurses and doctors of Pennsylvania Hospital and CHOP. There’s much to be thankful for.

 

November 29, 2006

Phew! We’re pretty exhausted, and if we’re tired imagine how things must be for the poor boy. Javid had his surgery today. It was scheduled for 9:30 a.m., so we dutifully showed up at 8:30. Unfortunately he needed some further preparation by the nurses before surgery, so he got bumped back to a later time. In the meantime they tried to switch him from the oscillating ventilator to a regular ventilator, but eventually decided that he would do better on the oscillator and switched him back.

The surgery finally began around 1:30 p.m., and including preparation and wrap-up lasted for about two and a half hours. Dr. Mattei, a surgeon with a great reputation and who is delightful in person, told us it went very well! He found a hole in Javid’s small intestine, and about half an inch of somewhat irritated-looking intestine on either side of the hole. So he snipped out about an inch-long segment, sewed it back together, and tucked it all back in. His exact quote was: “The two ends both looked so healthy, I couldn’t resist sewing them back together.” We say, way to go with your impulses, Dr. Mattei! :-) Since another option was for Javid to have a temporary ileostomy (bringing the small intestine out to the surface to allow his stool to be collected in a bag at his side), we felt very fortunate that it was possible to sew him all back up at the end. And of course we’re tremendously relieved that there was no sign of that nasty nasty NEC.

Apparently Javid’s vitals stayed pretty steady through the procedure. We’ve been warned that almost all preemie babies who have abdominal surgery swell up considerably and require higher levels of breathing support for a while. So while he looked good when we left him tonight, we’re expecting that the next time we see him he may be back to being Suma Javid.

The attending doctor told us as we left that the result of the surgery appeared to be a best-case scenario. We’re feeling so fortunate, while aware that he may easily be somewhat sick over the next days. In the long run it can’t hurt to have his bowels less hole-y, however.

Thanks to all of you who have been rooting for him today. We really felt your presence!

 

November 28, 2006

Javid is spending his first night at CHOP after safely making the move today. Surgery is scheduled for tomorrow morning at 9:30 a.m.-ish. His estimated weight right now (after subtracting for some lingering puffiness) is 2 lbs. 11 oz. Go Javid!

We’re of course hoping that the surgery goes well tomorrow, and are grateful for any positive thoughts, energy, prayers and vibes anyone may choose to send in his direction! Thank you!

 

November 24, 2006

Happy Thanksgiving! Our apologies for the lack of posts in the last week. Ana Lisa went back to work on Monday, which was hard but got better as the week went along.

Fortunately it was a short week and she has workmates who have been doing an amazing job helping out while she’s been gone.

We’ve also had some more moments of anxiety and feeling overwhelmed. As per usual, the week brought a combination of good and scary news. Way over on the positive side, both Tony and Ana Lisa got to experience Kangaroo care for the first time on Saturday and Sunday. That was both amazing and very scary, since this was the first (and as it turns out, only, so far) chance either of us has had to hold Javid.

Saturday night marked the first attempt at “kangarooing.” Javid was changed to a standard ventilator in the latter part of last week. He had a bit of a difficult day on Saturday, which meant that Ana Lisa’s KC time that night was tricky, since he needed extra oxygen most of the time she held him. Patti, the nurse on duty that night, warned us before we started that the first time is sometimes hard, because it’s a new experience for the baby. Patti valiantly supported both Javid and us as we went through the experience, however. Even though it was hard, it was also wonderful.

The next night Nurse Tonya assisted as Javid did much better with Tony, spending over an hour chillin’ on Tony’s bare chest! Ana Lisa tried not to take it personally, and felt better when the nurses told her they discovered late the night before that his tube had some gunk in it that was partially blocking his airway. (Unfortunately that didn’t entirely prevent Tony from gloating—just a little.) When we told his nurses (who shall remain nameless) about our little competition, they sheepishly admitted that they regularly do the same, saying to one another during shift changes, “Wow, really, he didn’t do well with you? He was great for me!” Good to know we’re not the only ones!

Late Sunday night Javid’s CO2 levels rose, and he was put back on the oscillating ventilator. While on the oscillator he can’t be moved around as easily, so further kangaroo care will have to wait until he’s back on the regular ventilator.

On Monday we found out the disappointing news that he had more leakage out of the drain in his abdomen. In Javid’s second week after birth there were some concerns about how his belly was feeling. X-rays weren’t able to show very much, so he had some incisions made in his abdomen to allow drainage. While he was too small at the time to do much exploring during the surgery, the doctors believed that it was likely he had a small perforation in his intestines. At that point they told us these things can sometimes heal themselves over time. Given how small he was, they didn’t want to do reparative surgery in the hopes that would happen. So, the surgeon put in some little drains to let any fluid out and to monitor the progress.

Over the last month or so since then, he’s periodically had a little “stuff” come out of the drain, but there was still a possibility that it was old “stuff” and therefore not as much of a concern. Over this weekend, after being back on feeds again for several days, he had what looked like stool come out of the drain. Although he is also “voiding” the way he’s supposed to, this made them concerned about what they think might be a “fistula.” This kind of fistula (not to be confused with the rock band of the same name) apparently is a connection where there shouldn’t be one, in this case possibly between the intestines and somewhere in the abdomen.

So the plan at this point is to do reparative surgery next Wednesday, November 29. He’ll have to be moved from Pennsylvania Hospital to Children’s Hospital of Philadelphia (CHOP) (about two miles away) the day before the surgery. Pennsylvania Hospital and CHOP are both part of the University of Pennsylvania Health System, and both have reputations as excellent hospitals. CHOP, located in West Philadelphia where we live, is actually quite a bit closer than Pennsylvania Hospital. But at this point we’re comfortable where Javid is at, and hope he will be able to return there after the surgery. If the surgery goes very well, we’ve been told Javid could return after four or five days. If he would need a follow-up surgery or some such thing, he could potentially stay longer.

This news that Javid would need another surgery initially threw us into terrified, frozen “freakout” mode. This slowly subsided to “consistently worried” mode as the week went on and we learned more. (Hmmm, maybe we should consider creating a color-coded alert system to communicate the level of scared and worried we are each day….)

Javid needs to be in really excellent shape for the surgery, meaning no infections and no lung issues. Otherwise it could postponed, which to us sounds torturous! It’s already really hard to be patient with five days to go. We learned this afternoon that one of his blood cultures came back positive for infection, which was disappointing but from what we understand, not unexpected. They had already put him on antibiotics to get him ready for surgery. Nurse Patti and Doctor Gollub encouraged us by saying there was likely enough time before the surgery for the antibiotics to knock out the infection. They will test several times before the surgery, so we’re really rooting for everything to come back negative.

So all this to say that Javid can use all the good vibes, prayers, energy, thoughts, and anything else you can muster up in the next week.

In the midst of all of this week’s frustrations, we’ve also been very aware today of all the many things we have to be thankful for. Here is a short list:

  • Ana Lisa’s good health in the wake of the preeclampsia
  • All the many competent and warm-hearted professionals who are working with and caring for Javid
  • Living near an excellent hospital system that we’ve come to rely on and trust
  • Access to health care and health insurance, which so many people don’t have
  • Being able to go through this with each other to lean on (so hard to imagine having to do it alone)
  • A wonderful support network, including friends, family, co-workers, bosses, and people we sometimes don’t even know who send us encouraging posts on this website
  • A tough little son who is doing well in so many ways despite entering the world so early
  • So many, many other things

Thanks to all of you for caring for us. We hope you have a lovely weekend.

p.s. We hope you have a good vacation, Nurse Jill!

 

November 17, 2006

Javid is back on the breast milk again, as of 4 p.m. yesterday. He lost 2 oz. of what the nurses tell us was likely pure fluid from yesterday, which was good. A too tiny amount of pee in one of his diapers today made us all worried that he was going back to not peeing again, but he improved since then and soaked a diaper tonight.

He still looks very puffy and really needs to lose more fluid. He weighed in this morning at 3 lbs., 2 oz., which sounds good. But much more than we’d like of that is water that he had been retaining, so it’s tough to tell how much of that is “baby meat” and how much is fluid.

Nurse Caryn also told us today that Javid has some infectious material in his lungs again. So he’s back on antibiotics, and they’re doing some tests to make sure it’s not in his blood. All of his other vitals are looking good, however. Yesterday he was switched from the oscillating ventilator to a conventional ventilator, which allows his lungs to work a little bit. So far he’s doing well with the switch, with oxygen and carbon dioxide staying generally at or near the hoped-for levels.

We got the exciting news from the night-time nurse that we can do kangaroo care now that he’s on the new vent! So, pending unforeseen setbacks, we have a date with the nurse to try our first kangaroo session tomorrow night! We were going to Rock-Paper-Scissors to see who got to go first, but Ana Lisa played the “who had preeclampsia and who’s been pumping for six weeks” card. Tony’s still grumbling.

 

November 15, 2006

To any of you who joined us in our chanting last night and today, thank you! It certainly seems to have worked for Javid’s parents, at least! We were laughing today when we realized that we both had interrupted our mad dashes into the ICN to check on whether he had peed yet … for potty breaks of our own.

As of this morning Javid started to move a little bit of liquid on through, and since then has been peeing fairly regularly, if not yet at the amounts that the doctors would like. Lil boy’s a bit of a puff ball as a result, but seems to be heading in the right direction. An ultrasound found no apparent problems with the status of his kidney and bladder, which is great! The milk feeds were stopped again at midnight last night until his outflow can balance out the intake. If he can keep the ole’ irrigation system flowing, they’ll likely start him again on Friday.

Today marks 30 weeks gestational age. Tony had a bit of a rough time with turning 30, so we’re hoping Javid is better adjusted.

 

November 14, 2006

Javid turned five weeks old as of Sunday, and the big news of the week is that he started back on breast milk yesterday. They decided to start him where they left off, which means they will slowly be increasing his amounts each day based on his weight. Javid’s weight as of yesterday was 2 pounds, 5 ounces, some of which is surely fluid but it’s still nice to know he’s gaining. Today he was up to 3 cc’s every two hours!

If all goes smoothly (it’s beginning to sink in that that really is an “if”`) he should be up to full breast milk feeds in about seven days. Ana Lisa talked to the doctor yesterday, who seemed very positive and eager to get him back on milk. And as of today, he was doing just fine with no “belly worries.”

The biggest challenge of the day was that as of 5 p.m. he had not yet peed and so was retaining some fluid. Tony came in to find the doc cracking jokes about putting his little hand in warm water to get things flowing. We found out later the doctor had actually changed the little noisemaker we brought in from the steam train sound to a water sound called “ebb tide”!

Following today’s visit, cousins Maggie and Edwin, Auntie Amy and Ana Lisa were inspired to start chanting “1,2,3. Pee, Javid, pee!”

Edwin, age 1½, mostly joined us with the “pee” part, and even after we stopped, continued to randomly say, “Pee! Pee!”

 

November 10, 2006

Javid is doing quite well at the moment. He’s had several days in a row of pretty stable settings and gradual reduction in his puffiness. He now weighs more than 2 pounds! He’s also opening his eyes quite a bit more, and using his hands in ways that feel more intention, like sticking his thumb in his mouth or covering his eyes. For several days he has had no more draining from his abdomen, and (this probably qualifies as “oversharing”) his stool is starting to change from meconium to the real deal. We’re hearing from the nurses and docs that if he continues to do as well over the weekend, they’re continuing with the plan to reintroduce breast milk on Monday.

We’ve probably been spending as much or more time in these days thinking and talking about our own “condition” as about the boy’s. We notice, for example, that we carry around a pretty constant certain amount of anxiety … and that as a result we’re very sensitive—at times—to scary information. It doesn’t always even matter if it has anything directly to do with how Javid is doing at a given moment.

Wednesday night was a good example. We were really happy because it was his one-month birthday and he was doing well. So we were feeling great. Tony was on the web looking up references to “wimpy white boys,” since Nurse Jill had told us that statistically white males tend to be the most fragile of all preemies. It came up because she had mentioned that Javid was doing very well and was “certainly no wimpy white boy.” Tony, who has many memories of feeling like a wimpy white boy, of course immediately wanted to find out more and, if possible, put it on the webpage. So he went surfing and found a page created by the mother of a preemie to share photos and news about her preemie son. Tony called over Ana Lisa in excitement, and we started reading, thinking how great it was that we could check out somebody else’s preemie baby page.

Literally two sentences down from where Tony had read up to before calling Ana Lisa over, the mother explained that one week before he was scheduled to come home from the hospital, her son had become sick and passed away.

We both recoiled from the computer … Tony literally pushing the machine back. We were both pretty upset for a while before we could bring ourselves back into a state of some equilibrium.

And that brings us to something else we’ve been noticing about out current state … much of the time most accurately described as in a certain amount of denial. :-) We’re learning—and not always smoothly—that we can take in certain amounts and kinds of information in any given moment, but sometimes no more than that. Also, the boundary between what’s tolerable and what’s not is more rigid than normal … hence the recoiling.

So we know of course that Javid’s state is very fluid, that there are still many challenges to overcome, and that the path to him coming home has no guarantees. But there are ways in which we choose not to know it at times, as a form of self preservation.

This too shall pass

It seems that almost every time we’re flying high feeling good about where things are, something will come along to take the wind out of our sails. At the same time, we’ve also found the reverse to be true—every time we’re feeling low, something seems to come along to lift us up. There are many examples, but the most recent was yesterday when we were visiting Javid. While we were hanging out with him, his nurse went up to the front for a while. When she came back her face was lit up. It turned out a former resident of the ICN, a 25-week preemie named Amber, was visiting with her parents. She’s now 2 years old, and doing great. It was amazing to see how excited our nurse was as she looked at Tony and said, “When you’re out of here, you need to come back like this!”

We had a chance to meet Amber and talk to her parents. She’s a lovely, lively little girl, and it was wonderful to see how happy and relaxed (well, relatively—she is a 2-year-old after all) her parents looked. They told us stories from their experience with a premature daughter, some of which was terribly frightening sounding. But we were completely disarmed hearing the stories, because the whole time we were looking at this obviously healthy little girl. We were almost floating when we walked away.

The experience reminded us once again how wonderfully we’ve felt supported by so many of you, and we wanted to thank you again. To all the parents of preemies who’ve popped out of the woodwork, your knowledge and understanding has been unbelievable. And to all the friends, family and colleagues who’ve been keeping us in your thoughts, cooking for us and sending us wonderful messages and cards, there’s no way to tell you how much it’s meant.

Thank you.

 

November 7, 2006

Javid had a good day. He’s still looking pretty puffy, but noticeably better than Sunday. His oxygen settings also got lowered some more today, after having been a bit elevated over the weekend. Of the cultures that were taken last Saturday, the only positive was for some infection in the mucous from his lungs, so they are switching one of his antibiotics to target that more specifically. There’s no sign of infection in his blood or abdomen at this point, which is a big relief since his abdomen is of primary concern during this time of trying to introduce him to a breast milk diet.

Today we met the surgeon who had performed the surgery on Javid’s belly some two weeks ago. Dr. Mattei took a look at Javid’s belly and said he was pleased with how soft it was. He and Dr. Gollub, one of Javid’s primary doctors, said that they would likely keep him off of breast milk until next Monday. Dr. Mattei mentioned the dreaded NEC, while both he and Dr. Gollub agreed that it was not very likely that Javid has NEC at this point. Preemies can be at some risk for NEC around the time when they start ingesting breast milk, although ironically a breast milk diet (compared to formula, for example) can apparently lower that risk somewhat. So they’re watching for NEC, of course, but also less-scary-but-still-of-concern problems like a pinhole perforation or some kind of pinching of his bowels. He’s urinating regularly and made another stool again today, so his “plumbing” seems to be working pretty good. The doctors told us many smaller problems fix themselves if given time. We’re trying to learn patience. Dr. Mattei did say that if something would develop that would require another surgery, Javid is growing to a point where the surgery would be less risky. That’s good news, we guess!

 

November 6, 2006

Hello everyone,

Javid’s been through a bit of a rough patch but he seems to be on the mend. For about a day and a half over the weekend he didn’t eliminate anything, and seemed to be retaining a lot of water. It was tough to see Javid looking swollen, but the docs and nurses tell us this is quite common for babies this size. The nurse has been referring to Javid as the Pillsbury Doughboy. Tony thinks that’s cute but completely dated, and would have been more satisfied with a Puff Daddy reference. Ana Lisa just rolls her eyes at both nurse and Tony.

The doctors suspended Javid’s breast milk ingestion until they can be sure that there’s not something bad happening in his stomach or intestines. They put him on antibiotics against the chance that it might be a developing infection and did a bunch of tests. So far all the cultures taken from his IV entrance, stool and lungs have come back negative for infection, although we found out that the cultures have to sit for 72 hours before they’re sure nothing will develop.

Last night when Tony was in, Javid was quiet and stable for his whole visit. Ana Lisa arrived later when he was going up and down a bit on his settings, which is always difficult. Today we left the poor guy alone, because we were the sick ones! Tony’s had a cold for two solid weeks, and today it seemed to be settling deeper down in his chest. So he’s now on antibiotics, apparently experiencing some kind of sympathy preemie symptoms. Ana Lisa, who avoided Tony’s cold for a week and a half seems to have gotten it too now. We decided that parents who were in such a bad state had better leave the caring of their son to the professionals.

So over the phone we’ve been hearing reports that Javid had a good day. He’s urinating again and made his fourth stool today (not that we’re counting … and aren’t you glad to know, anyway?). He probably won’t be started back on breast milk until this weekend at the earliest, but the X-rays are showing no signs of anything truly scary like NEC, thankfully.

We’re grateful that he seems to be on the mend, while of course anxious for him to keep growing so he can get to a place where there’s a little more margin of error. Ana Lisa printed up a few photos of Javid today to have at home. She put one in a picture frame, handed it to Tony, and within 30 seconds he dropped it! Are y’all sure you’re ready to trust us with a baby? Maybe we need these months.…

 

November 4, 2006 (first posted update)

Just a quick update on Javid. He’s now been on a small amount of breast milk for a week, and the docs have felt great about how it has been going—his digestive system seems to be working well so far, as indicated by three relatively large stools. The doc we talked to yesterday was so pleased with how he was handling the breast milk that he decided to move him forward a little faster than planned on his feeding schedule. His weight (a bit of an estimate because of all the tubes and wires connected to him) as of yesterday was somewhere between 1 lb 7 oz and 1 lb 10 oz. Even though that still leaves him a tiny little chap, it marks a big change in percentage of body mass—the equivalent of Tony putting on 100 lbs in less than a month!

This morning when we called, they said they had some readings they are a little concerned about that might indicate infection somewhere, so they took him off the breast milk feeds temporarily until they can figure out what is going on (for a more accurate understanding of Javid’s relationship to breast milk, go to the website and click on the link to “all milk diet” in the November 3rd entry—courtesy of Tony, of course :-) —Ana Lisa thinks poor Javid is doomed to a life of inappropriate humor). We just called again to hear that he seems to be reacting positively to the antibiotics they’ve started him on, but that they’ll take it slowly and want him to be solidly back to where he was yesterday before reintroducing the breast milk. This was disappointing news, but we are hoping this latest issue can be dealt with through antibiotics, and that it will not be something more serious.

The doc we met with yesterday, Dr. Gollub, said he is very proud of Javid, and that there must be a lot of people pulling for him. They’ve been pleased and a little surprised that Javid has not had any bleeding in his head, because apparently many babies born at this stage do. His risk of a head bleed went down dramatically after the first week so the likelihood of it happening now is relatively low. The goal for him in the next several weeks is to slowly increase the breast milk feeds, and eventually, once he bulks up, to think about taking him off the oscillator to a lower level ventilator. Once he comes off that, we may be able to begin holding him but that may take a bit. Dr. Gollub told us yesterday that the first thing he does when he comes into the unit is to run to check on Javid to see how he’s doing—kind of a big deal since it’s a relatively large unit! Tony’s comment to Ana Lisa notwithstanding (“I’ll bet he says that to all the parents…” :-) ), it’s clear they are really pulling for him in there too.

So, Javid could continue to use the good vibes, energy, prayers and thoughts, as they figure out what’s going on now. Thanks again to all of you for caring about this little guy and for your continued emails, cards and phone calls. We so appreciate them.

Ana Lisa and Tony

P.S. We are adding an “update” link to the top of the website so that you can check out the latest there too. It should be up sometime today and we will add any significant events there from now on.

 

October 29, 2006, birth announcement

Dear friends, family, and colleagues,

Some of you know already but we wanted to more officially announce the birth of our son, Javid Fynn Lapp Yoder on October 8th, 2006 at 5:13 p.m. You may also know that this event came much earlier than expected, at only 24½ weeks, due to Ana Lisa having a severe and pretty scary case of preeclampsia. Because of this, Javid (pronounced “Jah-vid,” as in “java”) was extremely small, weighing only 15 ounces—just under a pound—at birth. He remains at the hospital and will continue to be there for quite some time. In his first nine days he had two surgeries, one to close a hole between the chambers of his heart, and one to deal with the drainage from a small perforation in his intestines. When he had the heart surgery the doctor told us that the membrane he would be putting a clip into would be the consistency of a wet Kleenex! The abdominal surgery, although described to us as lower risk, created worries because of how fragile his digestive system is at this point. His response to both surgeries, however, has been very positive so far. His breathing improved quite markedly after the first surgery, and the drainage in his abdomen seems to be clearing up steadily over the last week and a half.

Both the early birth and his very small size have meant that Javid has needed and will continue to need a lot of intervention, and that things can change pretty rapidly. He has been pretty stable over the last week, for which we are very grateful. His neonatologist tells us she is impressed with how well he has been doing, describing him as “small but mighty”! (Which when communicated to Tony’s college friends led to his first nickname: “Altoid.”) We don’t know what the coming weeks will bring with Javid, and can only expect that it will continue to be challenging as he is still working hard to get to a more stable place. We are trying to take things one day at a time, since our experience so far and everything we understand is that this will continue to be a rollercoaster. We’re learning that it takes effort to manage anxiety! At the same time we are so grateful that Ana Lisa’s health is rapidly improving and for each moment we have with Javid Fynn.

In our first extended meeting with his neonatologist, Dr. Abassi, she told us that he is a tough little guy who has “very good genes”—we mixed them up special. :-) We’ve been so impressed with all of his nurses and doctors, but especially Dr. Abassi, who in the midst of all this has been not only clearly competent but also quite caring of us.

Ana Lisa is doing much better in the wake of her C-section, and was discharged from the hospital on Friday, October 13th. She did have to go back into the hospital for several hours this week after an attempt to take her off the blood pressure medicine a bit early didn’t work out so well. So now the doctor is letting her body take the slow route back to recovery. She will be on medical leave from work for several more weeks until the doctor is comfortable that the blood pressure issues resulting from the preeclampsia are back to normal. We are grateful that she is feeling much better and healing well from the surgery.

The most up-to-date news on Javid is that this week he was doing well on the oscillator so they took a stab at switching him to a regular ventilator. He did great for about 36 hours, but then his carbon dioxide levels started to climb and they switched him back. Friday the doctor told us that it was a good thing to try, but that it really wasn’t important to push that part at this point. What they’re more interested in is him being as strong and healthy as possible for early next week, when they hope to start introducing minute amounts of breast milk into his system through a tube. Apparently that will tax his digestive process in a new way, so although there are many benefits to getting him on Ana Lisa’s milk, they’ll take it slowly at first to see how his body handles it. So we’re both grateful for the last week or so when he’s been doing consistently well, and gearing ourselves up for what may be a challenging transition for him … and us!

For those of you who may be curious, we considered Javid’s name for the first time only the night before Ana Lisa went into the hospital as we were sitting around with some friends after dinner. We were casually talking about names, thinking we had another 3 months to mull it over! Who knew where we’d be in just a few short hours. Javid comes from Arabic roots and means “alive” or “living.” We liked the meaning before all this went down, but it became much more significant after the events that followed that night. Fynn we mostly just like the sound of—maybe we were subconsciously wishing him a Huck Finn-esque sense of play and enjoyment of living. We gave him both of our last names since we don’t want to have to document p/maternity when we take him traveling, although we expect him to use Yoder more. There are already a couple of Lapp grandchildren in this generation, so we figured we’d help out the Yoders with this one!

We are attaching a link to photos—some are from his first week, when he was still under a lot of blue lights and looked like a small, blue chicken with a pair of big shades. So be forewarned if you want to brave looking at those photos! The most recent are from this week, and his coloring is looking a little better. He’s still a scrawny little fellow, but Ana Lisa and others already have some theories about what parts of him look like whom. Ana Lisa thinks Javid’s forehead wrinkles like his father’s. And she and Tony’s boss both think he got his nose from Tony … poor kid! Grandparents Yoder think the shape of his head reminds them of their daughter. Someone even weighed in with the opinion that Javid has Tony’s knees, which was actually an ego stroker since we’re both of the opinion that Tony’s knees are mighty fine.… :-)

We’ll likely keep adding photos and comments to the same web page, so if you check back periodically you may be able to get a sense of how Javid is developing. We haven’t had time to add much text to the page at this point, except for a few silly things designed to keep us (and maybe you all?) laughing in the midst of all this.

Here’s the link:

http://www.weeplanet.com/index.php/javid/javid-fynn-lapp-yoder/

Today at 5:13 p.m. Javid will have spent three weeks living on the outside. We’re proud of his strength of will that has translated into some increased physical strength. We’re celebrating every ounce of increased weight and every lowered setting on the machines that are keeping him going. We’re also finding that although we keep reminding ourselves to expect challenges, our spirits get rocked pretty easily whenever there’s a fallback or reversal. When Javid had just been born the doctors assured us that they would inform us if something important happened, but also told us that the things they would be calling us about would be things that they considered important. Having lived through three weeks of watching numbers go up and down, listening to beeps and watching lights flash, we’re learning to take comfort in having some sense that if they’re not calling us he’s doing okay for now.

We know a lot of you have had us very present in your minds and hearts over last weeks. We’ve already experienced and expect plenty more ups and downs, but we’ve also been amazed by the wonderful company on this new journey. We are so grateful for your warm thoughts, encouraging messages, emails, flowers, cards, food, phone calls, visits, hugs, prayers, tears and laughter, which have sustained us through the darker moments of the last weeks. You deserve more than a group e-mail in response!

Warmest of wishes to all of you.

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