Looking In On (Part 2)

I don’t mean to be shallow or superficial or anything (and go ahead and judge me for saying this), but sometimes looks are everything. Physical appearance matters, and sometimes for a lot, it turns out. In a roundabout way, let me explain.

David has a pretty incredible primary nurse. Her name is Sam. She was assigned to David in the ICN the early morning he was born and now that she’s his primary she’ll be with him every day that she works until he leaves. We love Sam. David loves Sam. Sam loves David. It’s a storybook plot. Sam cares about David enough that when he got sick last week, she called in on her day off to check on him. That makes us feel well cared for. She also listens to us and responds to our concerns, sometimes before we even express them. And this past week, while David had been sick and plateauing on his oscillator settings and looking as though he would never ever in a hundred years come off of it, Sam listened to us very closely.

Two days after David got sick he puffed out like a blowfish, to the point where he could barely open his eyes. It’s understandable that being sick, fighting an infection with antibiotics, receiving a sedative for the jiggling oscillator and taking fluids through an IV would turn him into a sponge. I started to call him the marshmellow man, because that’s what he looked like. I was calling him names, not to be cute, but because by the weekend I had a deep down concern about it, like even though I knew it was a normal reaction to everything his body was dealing with, I didn’t like it. I didn’t like the way he looked. And Sam knew this, from my nervous name-calling. So when I walked into the ICN on Monday morning with my fingers crossed that the downswing had curved back up and found out that David had once again increased his oxygen needs through the night and was still swollen like a tick, Sam had already developed a plan. It wasn’t to consider the undesired steroid option to give David’s lungs the boost they need. She wanted to give David a diuretic, and she requested to the doc to do just that.

So that’s what they did on Monday morning. They gave David a diuretic, and he literally peed his face off. I don’t say “literally” to be emphatic. Here is a photo of David on Sunday afternoon, which is what he still looked like on Monday morning, and what he had looked like for almost a week. Below that photo is a photo from Tuesday, after he was given the diuretic, and after he had literally peed his face off.

Sunday Afternoon

Tuesday Afternoon

Only hours after beginning his diuretic diet, all of David’s oscillator settings came down considerably, and by yesterday morning he was moved back to the conventional ventilator. Tomorrow there is talk of extubation. But we won’t get our hopes up.

He is feeling better from his infection. But in this case it also took looking past the med charts and numbers and machines and desats and settings and straight into the incubator—to David and his swollen little body—and to say, he just looks uncomfortable.

Plus, yesterday he turned one month old and he wanted to have a good day.

Based on a January 29 due date, we’re 1/3 of the way home. I put up his advent calendar today (thanks, Prue) to help us count up the days of December.

J & G & D

Picture Day

Yesterday was picture day in the ICN. Although David isn’t in school yet, the idea of picture day had me longing for turtlenecks, large brown glasses, slobbery retainers and awkward smiles in front of a white sheet in the lunch room.

Graham + Jane = True Love (and most definitely an awkward dorky son. Sorry, David)

Yesterday was family picture day, courtesy of Kathleen White, a local professional photographer, and the March of Dimes. Kathleen generously offers a free monthly photography session to all parents of children in the ICN. Like the Tuesday night harp music, it’s another perk of having a preemie. We got there early and dressed David up in an outfit that he still can’t fit into, and then nurse Sam ordered a special stretcher-chair to his bedside so that I could lie level to his isolette and he could Kangaroo with me for the pictures. Because of the oscillator machine and its stiff plastic tubing, which makes it hard to move him, David had not been out for a week.

After a bit of a production, the three of us gathered around together and had our first pictures taken as a family.

David had a hard time smiling with his mouthguard in.

I wish I could say David was feeling and looking his best for picture day. Unfortunately he wasn’t, and we could tell that from his puffy eyes and his increased oxygen needs. I need to go back and re-write a few of my earlier posts, because although they were true at the time, they’re not as true now. David is not just premature, he is sick. And he’s no longer taking the common course, but rather “his own course” because he’s a “puzzlement,” as the doctor claimed yesterday. These are not comments that make us feel great. And I have held off from writing through the weekend because I don’t like to write to you until I have processed my thoughts and feelings.

They have not identified his infection yet and it’s not clearing up as fast as they hoped. He finishes his antibiotics today, but the consensus is that it might not be a bacterial infection. They’re still checking for a viral infection. That he has an infection is not the biggest problem, it’s his inability to be weaned from the oscillator that is concerning, and the infection is certainly not helping the process. We’re told that the longer he stays on it (the machine) the longer he stays in it (the ICN) and the longer road he will have to recovery once he leaves. We’re fine with taking a longer road; we’re not as fine with not knowing where it’s headed (it makes us uncomfortable and fearful). But that’s the daily struggle in this place, and although we can’t know all the outcomes, like when he’ll leave and what future problems he might face, we still have to take it in sometimes strained and wobbly strides.

After picture day and his Kangaroo care session he had a better afternoon. A week of meds and isolation and an unidentified illness…maybe what he really needs right now is just an extra dose of snuggle time.

Be back with the good news soon.

J & G & D

What’s Common is Uncommon

I mentioned in a previous post that the two words we like to hear most are the words common and normal. This statement stands true. We do think our son is pretty great, and we always will, but I can tell you for sure that it’s also a relief to be reminded that David is nothing exceptional. He’s nothing special; he’s quite normal and ordinary, in fact. And as I walked the halls of the hospital on Monday night, forcing the ever so impervious and silencing lump out of my throat and the unwanted “this-was-not-how-it-was-supposed-to-be” feeling that I have guarded myself against for the past three weeks, I reminded myself of this, that this is all very normal.

That David suddenly fell ill late on Monday afternoon with an infection in his lungs and possibly another in his blood, is something we should have better prepared ourselves for, something we should have remembered would most likely happen. Because this happens often. In the ICN, babies get sick and babies get better. But that it seemed to hit both of us so hard I think is also a reminder that, yes, although this is common, it is also the most uncommon thing in the world. What I mean to say is that we were both reminded of the singularity of our experience in the ICN, that although we can expect the sudden downturn of events (lots of people have experienced what we’re experiencing), it doesn’t make the experience any less sudden and saddening and singular.

Although they haven’t identified his infections yet, David will be fine in no time. He’s on a general antibiotic and a new breathing machine called an oscillator, which jiggles him like jello pudding. It’s weird, sort of like a vibrating chair. The oscillator does two things: it forces continuous air into his lungs to keep them constantly inflated while also providing him with breaths. This will give him a rest and help him to spend more time recovering. He’s turned from pink to pale back to pink in no time.

His "thumb" is up for recovery.

I spoke too soon in my last post. The clothes are back off and the IV is back in, so no modeling pictures just yet. Maybe after Thanksgiving, when he’s recovered and putting on weight again, because by then he’ll hopefully be back to eating his 147.2 calories of milk per day. What’s that, like a bite of pie?

This will be holiday #2 of 4 in the ICN. We don’t mind, though; David wasn’t supposed to be “out” for the holidays anyway 😉

Enjoy your feasts and families.

J & G & D

Mr. Potato Head

I learned a new term in the ICN this morning: “toaster head.” If you know a preemie or have had a preemie you might be familiar with the preemie-ness of preemies—the long head and skinny-around-the-eyes look that most preemies have for a short time once they leave the ICN. David’s nurse put him on his back after his noontime meal today. She said she likes to help alleviate “toaster head” whenever possible. Toaster head? My son is suffering from toaster head? Is that like electric shock? Will he lose his hair and eyeballs?

Premature babies, especially those like David who require extra ventilator support for extended amounts of time, have to sleep on their sides with their heads either facing to the left or to the right. Rarely are they able to sleep on their backs, because it takes a bit of engineering to rig up an apparatus to keep the breathing tube in place. That means their heads grow long and thin and somewhat flat, like a piece of toast. And the shape sticks for some time after they are discharged.

To save him from the na-na-na-boo-boos on the playground, David is undergoing his first treatment for toaster head. (Someone should make a cartoon out of this. You could call it, “Mr. Toaster Head and the Incubator Adventures.”)

Frankly, I think he looks more like Mr. Potato Head. And Mr. Potato Head is cool.

Mr. Potato Head

Mr. Potato Head Wannabe

It was nice to hear today’s diagnosis spoken as a full term. Everything else has been spoken as an acronym, or, more aptly, spoken as preterm language, because it’s never carried out. It’s like texting, doctor edition: because of David’s RDS (respiratory distress syndrome) he is now suffering from BPD (bronchopulmonary dysplasia) and with all the PIPs and PEEPs and XYZs he will eventually need to be tested for ROP (retinopathy of prematurity) because the O2 and BPM going to his brain could cause vision loss.

What I have just told you is all ATS (a true scenario). But for today, we’re not going to stress over it. David has toaster head and they’re going to try to treat it. But what’s even better news, he’s wearing clothes! Yes. His bilirubin is cleared out, his IV has been removed, so with fewer cords and no need for a tan, he can wear clothes now.

Be sure, he’ll be modeling a few gift outfits in the coming posts.

Overall, we have had a few “good” days, and we’re riding on them. As soon as David comes off this ventilator the days could get rocky again. But for now, he’s 30 weeks and rounding out 3 pounds. That is to say, he’s doing the most he can as best he can, so that’s a good boy.

Xs and Os,

J & G & MTH (Mr. Toaster Head)

Trading Scents

It’s curious to note some of the things that I have come to love in the past twenty days, like, for example, the smell of plastic tubes. I have never ever liked the smell of plastic, or at least I have never considered whether or not I like it.

The ICN/March of Dimes provided us with a welcome bag when David was first admitted into the nursery. In this bag we found another bag filled with two itty bitty flannel blankets called “lovies.” I always have a lovie with me and David always has a lovie with him. We trade lovies each day. The purpose of the lovies is to provide David with my scent in his incubator, which helps to comfort him.

The thing about these lovies is that, when I take his out and trade it with mine, his always smells so unmistakably of plastic. His whole incubator smells of plastic. On the inside, it’s just David, his blankets and his tubes. And although I don’t want to know my son by the smell of plastic, in a strange way, I actually find it deeply comforting. The smell is so strong and so particular, and so him (at least for right now)that I can’t help but feel attached to it.

Lovies and tubes keep him strong.

David is still, as they say, “swinging.” For the past week they have tried to wean him down on his ventilator settings, but his oxygen needs continue to swing from high to low. Today he is steady. Yesterday he was not. Tomorrow, who knows. It’s up to him. This is just how it goes, and how it will continue to go. Overall, though, he looks healthy, he’s squirmy, he opens his eyes a lot more and he’s growing. He’s 2lbs 12oz!

Hangin' with one of his many girlfriends.

Today is World Prematurity Day. You probably didn’t know this and I only know this because the March of Dimes organization is hosting a lunch and chat session here at the ICN. They’ve provided goodies and blankets for all the babies in the nursery, food and information for the parents, and a string of ICN graduate handprints to help us all remember that there will be life after this.

I don't know Logan, but his mom, Barclay, has been so very kind to e-mail me with oodles of information on how to survive the ICN.

Kangaroo care with Mom tonight. We’ll probably read him “Katy and the Big Snow” since he knows “Mike Mulligan and His Steam Shovel” by heart already.

J & G & D

Looking In On

Graham and I have always been appreciative of the fact that we have such a supportive community of friends and family, but we never knew that, in a situation like this—an unwanted but not unbearable situation that will, in the end, be okay—we would be so well thought of and looked after for days and days and days. David has just started his third week in the ICN. The amount of calls, voicemails, texts, emails, facebook messages, facebook posts, hospital visits, blog visits, blog comments, dinner drop-offs, drop-ins, flowers on the counter, cards in the box, invitations to go out for lunch, to meet for dinner, or to just simply step outside and take a walk, to get some air, remain, well, endless, and coming to us like breaths on a ventilator: steady and stable.

A simple, modest blog thank you from us back to you hardly seems enough.

But a thank you is what we want to give. Thanks for thinking of us and our son, whom most of you have never even met. Thanks for taking the time to check in, for caring, because it means a lot, and although we might not (but hope to) get around to thanking you all individually, we want to at least thank you here, collectively. Your collective support—even the shortest note and the passing “thinking of you”—have not gone unnoticed. Their collective, reverberating positive effects have helped us to “get through” our days in the ICN, to help us see past all the Purell pumps and the monitor noises and the tubes, to a day when David will be home. The thoughtful attention we’ve received has also helped us to remember something important in this life: to have regard for others, because although I’m trying here, I can’t really tell you how nice it is to know that as we watch after our son (and fret over his every twitch, furrowed brow and drop in heart rate), you watch after us.

So, thanks, all of you.

We haven’t updated in a few days but David had a fairly good weekend. He finished his indomethacin and as of yesterday his PDA was significantly smaller. As I said before, an open PDA in a micropreemie like David is extremely common. Of all the words we’ve heard in the ICN the two we like most are common and normal. He is right on track for his gestational age. He turned 29 weeks yesterday. The 30 week milestone is in sight!

His lungs are also looking better. This is the second of two x-rays I’ve seen. All I know is that black is good and gray indicates something is not quite right. He has much less “gray” in his lungs now, and the doctor thinks the smaller PDA is contributing to this. 

The next course of action is for David to take it slow, eat and gain weight. If he doesn’t come off the ventilator in the next week, we’re told not to panic. If he can gain weight and strength he will eventually be able to repair his lungs on his own, and start breathing with less support. Yesterday I thought back to when I measured David’s progress in my womb based on the size of fruit or vegetable he was each week. He started out as a lentil, grew to a lima bean and then an apple, and then, eventually, a melon. Every Sunday he changed shape and size and developed a new skill: he could stretch his fingers, he could suck his thumb, he could hear! I no longer think of him as a particular fruit. He’s a human, and all those developmental phases are taking place in front of us now, which, when I step back and think about it, is something quite astonishing.

                                      David will often touch his own face. The developmental therapist says this is his way of self-soothing.

                                                                                           Skin-to-skin Kangaroo care with Dad.

Tomorrow is Tuesday, harp day.

On that note, I thought I would include a poem that was sent to me by the number one card writer I know, Emily Copeland. This is a poem by Mary Oliver and it’s one of my favorites. Please do not feel pressured to read it, especially if poetry turns you sour. Please don’t read it if that’s the case. And if you just want to read my most favorite parts, I have cliff-noted them in bold and italics. If you want to read the whole thing, then by all means, read away. I encourage you to read it slowly.

Messenger by Mary Oliver

My work is loving the world.
Here the sunflowers, there the hummingbird—
equal seekers of sweetness.
Here the quickening yeast; there the blue plums.
Here the clam deep in the speckled sand.

Are my boots old? Is my coat torn?
Am I no longer young, and still half-perfect? Let me
keep my mind on what matters,
which is my work,

which is mostly standing still and learning to be
astonished.
The phoebe, the delphinium.
The sheep in the pasture, and the pasture.
Which is mostly rejoicing, since all the ingredients are here,

which is gratitude, to be given a mind and a heart
and these body-clothes,
a mouth with which to give shouts of joy
to the moth and the wren, to the sleepy dug-up clam,
telling them all, over and over, how it is
that we live forever.

Regards,

J & G & D

Save the PDA for high school, David.

Yesterday David started a new round of a medicine called indomethacin. He was treated with indomethacin immediately after birth. It’s used for neural protection. It’s also used to help with something called PDA (patent ductus arteriosus, (not public display of affection)), which is a common heart problem in premature babies. A valve is open in his heart that shouldn’t be open anymore. If he were still in the womb it would and should be open, but since he’s out it needs to be closed. When full term babies are born the first deep breath they take in has enough force to close this valve. David did not come out taking deep breaths of air and therefore this valve never closed.

His treatment ends this morning at 11am. He has been NPO the whole time (no idea what NPO stands for) but I do know what it means: no food during treatment. That means he hasn’t eaten since Wednesday night. He looks hungry to me. They will do another echo (heart ultrasound) this afternoon to determine whether the indomethacin worked.

They detected David’s open PDA by first hearing a murmur on Wednesday. As of yesterday, David’s murmur was significantly louder. At first I thought this was a bad thing. Doctor Suresh, who uses analogies to explain medical terms and procedures, said that if the murmur gets louder then the open PDA is most likely closing. He used the analogy of a wide river and a small brook. You do not hear the Connecticut river flowing because there is such a large passageway through which the water flows. You do, however, hear the babbling brook in your backyard, because the passage is small and therefore more turbulant. A louder murmur is potentially a result of a smaller passageway, a closing PDA.

His PDA could also have been the reason he started to struggle to breathe well on his own. As of last night he had been weaned off the pressure on his ventilator settings. If he can stay stable at room air (the oxygen level we breathe) with low breaths-per-minute he will come off the ventilator and be put back on his CPAP. We will find out all these results today.

                                                                                     For now, he says, just let me sleep.

J & G & D