A Slideshow

Last Thursday my mom traveled up from Virginia for the second time since David was born. My mom and Tina Ashton originally planned a small baby shower to be hosted on Sunday December 4th, but with David’s early arrival it changed into a “Welcome” shower. And eventually, with the bright idea and help from some of my mom’s craftiest friends, it evolved into a wonderfully low-key preemie hat and prayer flag making party.

It was just what I wanted and needed—a chance to see a good charge of great women in one setting. A chance to sit around, craft, and chat.

We worked on two projects: making hats to donate to the ICN at Dartmouth and a prayer flag for David. Thanks to my mom’s friends Betty Richmond, Connie Davis, Dana Krusz and Sheree Kiser for doing the initial sewing for the hats in Virginia. They were a hit at the shower and they’re now a hit in the ICN. My mom sent me a poor quality phone picture of the prototype a week before she came north. I thought the hat looked nice (I couldn’t really see it), so I was completely unprepared for the (and I’m really not big on this word) adorableness of them. They’re adorable.

I splurged and took a few for David.

Prue Fisher conceived the idea and organized the making of the prayer flag. She brought her sewing machine to the party and with paint pens and markers and fabric scraps we all created it there. At the end of the shower, we hung it in the middle of our  living room.

I have read every single one of them. They’re funny, touching, artistic—all things we hope David will be, and this prayer flag is already teaching him how. Thanks for the “thoughtful” gift, Prue. We’ll use it one day to help teach David to read.

Here’s a slideshow. “The Grannies” worked their magic and showered me with a pleasant and vibrant afternoon.

The Grannies, from left to right: Ginger, Prue, Meg, Heidi and Tina

Heidi painted, ribboned and had a mattress specially made for this bassinet. It's now in the family for a third generation!

Aunt Ninnie had preemie clothes made for David. Here is my fave.

Hat Station

Prayer Flag Station, (and Cindy P. providing laughs)

Jenny B. writing her well-wishes

GG and GG

David's library Before the shower

David's library After the shower

David’s on CPAP now, which means he’s breathing without the help of a ventilator, but still with the assistance of oxygen. This evening we will hear results from his most recent electrocardiogram. The doctor wanted to check for a potential SVT (Supraventricular Tachycardia). He had an episode a few nights ago when his heart rate jumped into and stayed in the 200s for almost ten minutes. They want to rule out any potential issues, but it’s more likely that he was just agitated and too warm.

He is a bear, you know.

As always, we’ll hope for the best.

J & G & D

Finding the Middle Ground

I’m not afraid to admit that I’m thinking in stranger ways than normal. For example, every time I have taken the elevator at the hospital over the past five weeks I have restrained myself from pressing the “door close” button. This might not seem like such a strange thing, but more often than not, in a regular non-David-related elevator ride, I press the floor number and then the “door close” button to speed up the process by a few seconds, if no one else needs to get on. The strange part about this whole little anecdote is that I somehow think that pressing the close button (which feels like a negative act) will affect David’s progress in a negative way. Like if I “close doors” in one way, it will reverberate in other ways. And so my mind has now attached two completely unrelated events to make me feel that, by controlling one silly, trivial event I therefore somehow have a little more control over the much more major and uncontrollable event.

You could say that that’s just the nature of superstitious thinking, and I agree. It is. But I still think of myself as a little extra strange for doing this, especially as I stand there alone in the elevator, resisting the urge to press “door close” and to get to David a few seconds sooner.

David has had some wonderful days since I last posted. He was extubated on Wednesday and placed on NIPPV, which stands for Nasal Intermittent Positive Pressure Ventilation. Prongs up his nose now replace the tube down his throat. Although there is much less of his face for us to look at, since it’s covered by a hat that holds the tubes in place and a chin strap to keep his mouth closed, he looks so much more comfortable. And he has a voice again! Imagine the sound of a hoarse kitten. That was the sound of David’s voice after they removed the four-week-old tube from his throat.

Here is a picture of David placed in a swaddle straight jacket after his most recent temper tantrum. He’s been throwing them a lot lately. On Saturday morning it took three nusrses to replace the prongs that had fallen out of his nose, because he was flailing and tearing at tubes and batting away his nurse’s hands. So with the force of three they were able to pin him down, one nurse holding his left arm, a second holding his right arm, while the third replaced his prongs. He’s fed up with all the mess on his face and they refer to him now as “the Bear.”  But feisty also means healthy, so I say, “Bear On, David.”

We’re all finding the middle ground right now. David’s not swinging with his oxygen needs as much, and he’s finding comfort in breathing a little more steadily on his own. Graham and I stopped swinging some too. Emotionally, that is. We’re ICN five-weekers now, and experience is helping us grow calmer by the day.

David’s plans for the week: breathing and sucking. He’s in training with a pacifier. As soon as he gets the hang of suck/swallow/breathe, he can start breastfeeding. But as it goes, it’s one small physiological step at a time.

J & G & D

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