Posts Tagged ‘NICU’

Two years already!

June 11, 2008

June 2008, Henry at 23 months

Dear Sweet Baby Henry,

Is this the last time I get to call you that, now that you are a big two-year-old-boy? Your nurses tagged you with that title as soon as we named you, but I’m not sure if the laughing, mischievous toddler that you are today can will tolerate that much longer.

Henry’s hospital name tag

Holding you last night before bed, I was overwhelmed at how far you’ve come in just two years. I love to hear you say your name (Haan-reee!) so I asked, “Where’s Henry?” You foiled me on that one, by laughing, patting my arm and saying, “Right here, Mama!”

You sing with a repertoire ranging from “Twinkle, Twinkle” and “Wiggle, Wiggle” from music class to “ABCs” and “Itsy Bitsy Spider.” When you begin the spider song, you put your hands in spider position and then wait expectantly for the rest of us to follow your example before beginning the song.

When one of us sneezes, coughs or blows our nose, you interrupt whatever you are doing to say, “Blesh you, Mama!” Or Daddy or Wo-Wo. Your sweet voice makes us laugh as you earnestly repeat everything around you.

You are such an early bird! You wake up, usually before 6 a.m., and insist on going “d’stairs!” Then, nestled in one of our laps and reading books on the couch, you’ll yawn, rub your eyes and say, “TIRED!” (Us too, Henry, us too.) All this from the boy who slept through his first six months of life.

Henry, six weeks old

All of a sudden, you love to eat. The boy who once only ate frozen peas, blueberries and raisins now has a startling affinity for food and lots of it. Your list of favorites are wide ranging, too—pancakes, waffles, vanilla soy milk, black olives, pizza, broccoli, boiled eggs, applesauce, oh, and pork, of all things. Pork tenderloin, breakfast sausage from the local butcher, sliced ham—it disappears when we place it in front of you. You, like your brother, can’t get enough fruit, and you can eat as much of it, if not more, than he can.

After outgrowing a trinity of food allergies (milk, soy and egg), you’ve only been denied nuts and chocolate. Since Easter you’ve been well aware of “CHOCOLATE CANDY, PLEASE, HAVE SOME, WANT SOME, PLEASE, CANDY!” Just the possibility of chocolate inspired your longest sentence to date and guess what—you get to have some for the first time today. Life is good, Henry, and about to get even better.

You love to walk up and down the stairs by yourself, saying “I do it!” if anyone tries to carry you. You’re a skilled climber, and although you can swing your leg up over the rail of your crib, your contented personality seems to mean that you haven’t decided to climb out of it yet, THANK YOU, ALL THINGS HOLY. If we get even another week in the crib before you shimmy over the rail, I’ll owe something HYUGE in the cosmic sense.

Henry, 23 months

You broke my heart a little when you recently stopped calling banjos “banga-boes,” but calling your daily dose of yogurt and blueberries “gogurk and babies” makes my heart sing, and your insistence that applesauce is called “OSS” is fine with me.

When you were a newborn you sometimes got “accidentally” bumped by your brother. And when you began to play together, your brother often thought it was fair game to snatch your toys. I would whisper in your ear, “Henry, the first time you swat him, I will look the other way.” And look away I did, but now I sometimes have to rescue Will. Guess you really are a tough guy—one who is awfully cute when he says, oh-so-contritely, “Sorry, Wo-wo!”

I look at your sturdy body—your round toddler belly, the face smeared with blueberries and oatmeal, your impossibly long legs, your scratched and scuffed knees and the blue play dough under your fingernails—and wonder how any part of you could ever have been so delicate as to fail you. Visiting with one of your NICU nurses a few weeks ago, it took us both a minute or two to find your sole remaining badge of courage—the small white scar near your armpit, leftover from your chest tube so long ago. You were laughing as we turned you upside down and tickled you while looking for it.

Henry, 16 days old

Just recently I updated my notes on the computer for your teachers as you moved up to a new classroom in your child care center. I reread last year’s file in amazement—words like critically ill, respiratory distress, ventilator and preemie swam in front of my eyes and seemed entirely displaced on these notes about a perfectly healthy almost-two-year-old boy.

I deleted all of them.

Henry, 23 months old

Happy Birthday, Sweet Baby Henry. We love you!

And you are not going to believe how good chocolate is.

Love,

Mama

Pat yourself on the back, part 2

April 21, 2008

So as promised this morning, the photo.

And a brief tutorial to help you understand just how incredibly fabulous this photo is. Which may not have been obvious as first glance.

The March of Dimes WalkAmerica event, April 1984, suburban New York.

Celebrity walker? Local resident John Schneider of the Dukes of Hazzard.

That’s me in the glasses and disdainful look. And the purse.

1a. The Expression

Facial expression is fabulous example of bershon, perhaps earliest known example in my photo collection. Frequently accompanied with eye roll and no-paparazzi-please-hand-in-front-of-face-gesture. If my children ever do that to me, I will buy imported chocolates and fine wine with their college funds. My mother was a SAINT to put up with me.

Friend Joanne graces my mother with a pretty smile. No bershon for her.

1b. The Glasses

While I looked like an owl or giant bug in my apricot-colored frames, I was part of a HUGE trend sweeping St. Mary’s School. When I searched the albums for this photo, I noticed TWO OTHERS in frames just as big and bug-like as mine. HOT, you might say

2. The Purses

If I remember correctly, Le Sport Sacs were the required vessel for us in seventh or eighth grade which is, I think, when this photo was taken. Joanne’s was a sophisticated gray and navy pin check; mine was classic navy. I’m sure both of them had these in them:

And maybe one of these:

And definitely one of these, even though I was walking with a friend. She had hers, too.

We were both listening to either:

A) Madonna

B) The Police

C) Michael Jackson or possibly

D) Air Supply

3. The Other People in the Photo

Not related to me or my friend, yet in my photo album for all time. My whole photo album from childhood looks like this.

4. The Outfits

Matching ‘big shirts” and while I have no idea what shirt I was wearing underneath (though I can see it is turquoise and my collar is up), I can tell you I was wearing some AWESOME jogging shorts. Probably these:

Those people on my right and left? No relation. I don’t know them.

I can confirm that these were all taken in 1984, though.

That’s my baby sister Maggie, born in June 1984. That’s me, proudly displaying my WalkAmerica teeshirt. And jogging shorts.

* * *

You’ve done it!

The team has exceeded the goal of $2,000 raised for the March of Dimes, in large part thanks to H & W readers.

I can’t begin to tell you how amazing you are. I’ll give you a few days to recover from the visual assault above and then will post the other promised gems. You know, to REWARD you.

Pat yourself on the back

April 21, 2008

Readers, you’re amazing.

From what I can tell by looking at the NICU team totals since Friday, you have raised MORE THAN $500 for the March of Dimes by supporting our NICU team on their March for Babies this coming weekend.

And the amazing part? This isn’t even all from Henry’s generous friends and family. Plenty of these gifts came from a wonderful web of Internet friends who I have NEVER EVEN met. Did I mention amazing?

PHOTO STATUS:

Due to lack of inhouse scanning ability, promised photo of walking purses plus TWO bonus photos from same era will be posted later today. I’m SO NOT dodging this, I just have an all-day photo shoot to attend for work, and I haven’t figured out how to scan and art direct at the same time, that’s all. Email me if you know how I can accomplish that!

While you’re waiting, here’s something for you to consider.

The NICU team team tally stands at $1,885 today this morning, towards their goal of $2,000. Think H & W readers can get them the rest of the way there? Even gifts of $5 will help towards that bottom line! Click here if you’d like to join in.

And of course, I have incentives.

Without having photo albums in front of me, I think I can put my hands on these gems:

Your choice of

A) a senior graduation photo from college (SERIOUS HAIR)

B) a “we’re on our way to a college formal dance” photo

C) a high school PROM photo

D) a photo of me circa 1984 when I thought it would be a great idea to have Farrah Fawcett layers? Even though I didn’t own a blow dryer? And I had wavy hair? And my mother assured me it wouldn’t be a good idea?

You can have any one of those photos (Leave your vote in the comments, and you are eligible to vote even if you already made your donation last week.) if the NICU team gets to $2,000.

In fact, if that happens, I will even let one of my sisters pick a bonus photo. You know, my younger sister Kate, who suffered with me as Bossy Older Sister? Who might pick the most embarrassing one ever as revenge?

You all are so incredibly generous, warm-hearted, thoughtful and sincere. My thanks to you, from the bottom of my heart. And think of those babies, those tiny, helpless babies that thank you, too.

Saving babies, one step at a time

April 18, 2008

Remember this little guy?

Henry, Day of Life #2

Henry, Day of Life #8

This is him today, at 22 months.

That thing he is standing on? A giant rock that he jumped off a minute later.

We remain forever grateful for the excellent care, lifesaving procedures and sophisticated equipment that were available to Henry when he was born prematurely nearly two years ago.

It comes as no surprise to us that, after spending their week caring for premature newborns, some of the members of Henry’s NICU team are taking a precious weekend day off on Sunday, April 27 to walk in the March of Dimes March for Babies.

Their walk will raise money to provide better access to prenatal care, support for families with premature babies and fund vital research, among other things.

If you’ve known a preemie,

if your child was a preemie,

if you were a preemie,

if you’re grateful that you didn’t have a preemie,

if you might someday have a preemie,

if you’d like to honor the medical professionals that cared for Henry,

or if you just think Henry is a tough guy,

I encourage you to click here and make a donation toward Henry’s NICU team goal of $2,000. They’re about halfway there—will you join us in helping them reach their goal?

And if saving premature babies isn’t enough for you, how’s this?

If any Hank & Willie reader* makes a donation to Henry’s team before Saturday, April 26, I will post a photo of me and my friend doing the March of Dimes WalkAmerica (as it was formerly called) circa 1983.

WITH OUR PURSES.

BECAUSE YOU NEED YOUR PURSE WHEN YOU WALK 20 MILES.

I’m telling you, it’s worth it for the photo alone.

*When you make a donation, send me a message or leave a comment so I know if I really am going to have to post this photo!

Edited to add: H & W readers are amazing, thank you! I’ll post the photo on Monday. I sincerely hope more friends of Henry will follow in your lead!

It’s probably Toe Fungus Awareness Month, too

November 29, 2007

Well, friends, we’ve nearly reached the end of NaBloPoMo, but we’re also nearing the end of another “National Month of” — Prematurity Awareness Month.

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It seems like a funny thing to promote awareness of—if you have a preemie or know one, you’re aware of it. And if not, what do you need to be aware of?

Plenty.

We can all be aware of that one in eight children are born prematurely, even to those women with low-risk pregnancies and excellent prenatal care.

We can be aware that premature labor can happen to any pregnant woman at any time.

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We can be aware that the economic costs—costs we all share through our insurance premiums—are staggering, with pre-term births costing more than $26 billion a year, or approximately $51,000 per baby. (My million-dollar baby hit $51,000 in expenses just within the first few days of his hospital stay—at one hospital.)

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And we can be aware that researchers working to solve so many of the mysteries of pre-term labor are supported in large part by private donations.

Today I look at my healthy 17-month-old boy born at 36 weeks, barely an official “preemie” at all and now hitting so many of his developmental milestones on time or ahead of schedule, and I hardly feel like I have a place in the preemie parenting world. It is a world in which some truly amazing former preemies are thriving despite the feeding challenges, developmental delays, vision problems, mobility impairments or other lingering side effects of prematurity.

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But then I look back on the extraordinary life-saving therapies Henry received, some that even a baby born half his size might never need, and I know that I have earned my preemie parent stripes in the trenches like any other NICU parent, even if our time there was far shorter than for some.

 

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I know that I don’t wish it on any other parent and would do anything I could to help another family avoid this. And I’m so grateful for the combination of expert neonatal clinicians and the generations of medical research that, together, allowed us to bring our baby home.

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Click here to learn more about the March of Dimes and their Take Action campaign.

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And then go find a NICU nurse or doctor and give them a hug for me.

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Part 3: In which we bring him home

June 29, 2007

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Henry, day of life #9

Again, my medical professional friends and relatives, please let me know if I got something wrong. As I said, our medical team taught us well, but it is entirely possible I lost something in my interpretation of the facts.

We celebrated a big day this week: one year since Henry came home from the hospital.

Our big celebration consisted of sitting in the backyard on a steamy hot night with a cold beer, watching Will laughing and jumping through the sprinkler and cheering Henry as he chased his rubber ball, all while marveling at how differently fragile life felt just a year ago. And then we turned on the grill and explained to Will that beer is a GROWNUP drink and he wouldn’t like it anyway.

I left you in Part 2 as Henry was wheeled off to his ambulance, mostly because I needed a break at that point. And, truth be told, it was probably the lowest point of his illness, so anything after that will be more upbeat. It was just so unbelievably hard to process that our robust 36-weeker, hardly a “real” preemie, went from having his breathing monitored overnight as a precautionary measure to this unimaginable scenario.

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Name tag on his warmer at the first hospital, made by his nurse practitioner.

When we got to Yale, his nurse, an experienced NICU practitioner, didn’t pull any punches with the gravity of his condition. She hugged me tight and said, “We are doing everything that can be done for Henry. Now he just has to decide he wants to be here with us. And he will.”

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Oscillating ventilator shaaaaaaaaking away at 700 breaths a minute.

We watched as he labored on the oscillating ventilator, despite his morphine drip to keep him completely sedated — he had already been dosed with morphine and Ativan while on the conventional ventilator, but the experience of being on the oscillator, rapidly puffing the lungs with nearly 700 “breaths” a minute is such an inhuman way to breathe that total sedation is essential.

His nurses there were as wonderful as the ones we had left at the smaller hospital. Our first nurse there was the most incredible blend of skilled neonatal clinician, psychotherapist, engineer, educator and friend, orienting us to the harsh realities of having a baby at this busy, urban hospital—and so many of his nurses there shared similar characteristics. Oversubscribed by more than 10 babies when Henry was there, his nurses still found time to make a name tag for his warmer and share some of kindest gestures I could imagine.

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One nurse on the overnight shift exclaimed when I called at 2 a.m. to check in, “I just met Henry tonight, and he is such a Henry! What a perfect name for him!” I don’t know what my silent, intubated and sedated infant did to live up to his name, but her warm words gave me confidence and inspiration—permission to imagine Henry as the healthy baby he would ultimately become.

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On the oscillator, with chest tube set to water seal.

And finally, after just a few days there, his attending physician changed our entire outlook on Henry’s illness with the first guarantee anyone had given us about him: she gave us the daily update after rounds one morning, and then reached over and patted my hand, saying, “This is FIXABLE. It will take a while, but Henry is going to go home with you, and he is going to be just fine.”

Henry received three more doses of surfactant while on the oscillator, and we watched and waited. His desats were still too significant to hold him, but after three days on the oscillator, we registered the first real victories of his newborn course: they began to wean down his settings and he tolerated it, while a head ultrasound revealed normal condition with no brain bleeds. His chest tube was set to water seal (the last step before removing it—the water allows his team to watch for bubbles, like in a tire with a hole), and the biggest news of his young life—his team cautiously stepped him down to the conventional ventilator, keeping the oscillator tube at the ready for the first 24 hours.

That same day, Henry’s nurse looked at me and said, “Wanna hold him?” I was terrified to even try, but she explained that everything with these newborns is a test—take something away and see if the baby can take it. Or subject them to stress and see if they can manage to hold their sats, or their heart rate and body temperature. He was still sedated, so she and the attending physician decided it was a good time to give it a try.

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And it was wonderful.

I had only held him for a short moment after his birth and then not again since.

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Holding Henry for the first time since birth while his doctor looked on.

Walking through the maze of warmers and isolettes of the open ward, it was hard not to notice the astoundingly small micropreemies populating the room, including a 25-weeker whose entire foot was the length of my THUMBNAIL. And I don’t have long fingernails. I look at my thumbnail now and can hardly believe it. I hope that baby had an outcome as good as Henry’s.

Henry spent another two days on the vent at the larger hospital, and then with babies stacking up to the rafters at the acute care NICU, they transported him back to our local hospital NICU. We were thrilled to have him back there.

And after another day there, Henry ticked off a few more milestones: he traded the ventilator for his old friend, the nasal canula, he began the hard work of kicking his morphine habit after his days of sedation (may you never have to witness a newborn with withdrawl tremors) and snuggled with Dad for Father’s Day. He struggled a little for a few days after extubation, but a few rounds on the nebulizer with Albuterol, plus some stern pep talks from his nurse practitioner helped him avoid reintubation. At the same time he received doses of a diuretic, and the puffy, immobile baby we had seen on the vent started shedding water to look more like the newborn we met at birth.

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Henry off the vent and on supplemental oxygen via nasal canula — the tube in his mouth is for feedings. The heart is from his lovely, wonderful nurses who put love in everything they do for our babies.

Now that Henry had decided to work on this breathing thing on his own and was ending his course of IV antibiotics, it was time to start talking about the all-important checklist of things that Henry had to accomplish to go home. He had to hold his sats at a target level (97-100%), he had to get off the radiant warmer and hold his body temp in an open crib (the plastic bassinettes used for newborns in regular maternity rooms) and most importantly, he had to learn to feed. The complicated task of sucking and swallowing while breathing can even be a challenge for some healthy full-term newborns, and it is especially tough to coordinate while still learning to breathe. His first feed was 12 ccs of breast milk delivered via syringe down his nasogastric tube, and if you are wondering what 12 ccs looks like, you wiped it off the counter the last time you did the dishes. But still!

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Henry with eyes open for the first time! Day of life #13

We tried nursing and bottle feeding later that day, but was he was still too sleepy and uncoordinated to breathe and eat at the same time. But with the help of his nurses and our excellent lactation consultant, we persevered, and within days Henry was beginning to get the idea. At the same time he was shedding equipment right and left—his umbilical arterial line was removed, his IV was removed, his chest tube was removed and finally, he was breathing room air ON HIS OWN.

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Henry looking like a real baby—dressed and swaddled, no breathing support, with just the NG tube for feedings and his monitor leads under the blanket.

Now that he was learning to feed, the final hurdle was to get him to take enough milk without having to supplement via gavage feeding, down his NG tube. The pattern was to feed until he was exhausted and asleep (about, well, a minute), then hold him while supplementing his feed while he slept off the effort. When I arrived one evening to start his now nightly bath and weigh-in, his nurse greeted me with good news—if he had gained any weight in the last 24 hours, we had the go-ahead to remove the NG tube and proceed with bottle and breastfeeding exclusively.

We stripped him, put him on the scale and….one gram! He had gained one gram in 24 hours. His nurse hugged me and said, “That’s a weight gain in my book!” And so Henry got rid of his tubes, and was left with just monitor leads. It was truly remarkable to see him wearing clothes and swaddled like a regular newborn.

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Once Henry was well enough to be covered, his nurses dressed him in fetching preemie outfits from the NICU wardrobe, complete with coordinating blankets. This handmade green blanket came home with us as a reminder of the warmth and comfort he received at our local NICU.

As Henry began to feed, I spent overnights in the family room on the unit, and one night got a special bonus—written permission from the attending to try “rooming in”—Henry slept in his bassinette in my room while the night nurses stayed vigilant on his monitors. It was the most wonderful and scary feeling to be alone with this baby for the first time—for his whole illness we had just felt like bystanders next to the clinicians who were really taking care of him, and now, finally, it was MY job to take care of him. It was also the first time since birth that he had ever been in the dark.

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Taking off the monitor leads.

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His rig at the beginning—day of life #2

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Same room, look at the difference in equipment around him! Day of life #16

Henry continued to improve his feeding skills, slowly but surely, and his doctors and nurses starting saying that magic word—HOME. He still was a sleepy, sleepy baby with sometimes too rapid respirations, but he was feeding, holding his body temperature in his open crib and holding his sats between 98-100% on room air. He passed the car seat challenge that all NICU babies take before discharge (an hour and a half on the monitors while sitting in his car seat), and it was time to take this boy home.

And so we did.

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Henry in his first hour home, day of life #16.

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Will (22 months) and Henry (16 days), together for the first time.

And as a little preview of his one-year slide show still to come, I leave you with this. Apologies for the terrible cinematography and hack editing job!



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Part 2: The first forty hours

June 22, 2007

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Henry, day of life #2, with pulse oximeter around his foot

What I have finally figured out in trying to write about Henry’s newborn illness is that there is no possible way to cram the details into a few blog entries. And, as it turns out, it isn’t necessary. I mean, do you really need to read about each hourly crisis a whole year later, especially when you already know the happy ending? I didn’t think so.

For me, writing about Henry’s medical misadventures means picking out the moments that defined the experience for us, all those moments leading up to the best outcome we could have imagined: a thriving baby boy. And in fact, the only way I CAN write about it today is because of how it all ended. My heart aches for the families of preemies without a happy outcome, and I will never take for granted that we weren’t one of them.

Writing about it now is also an opportunity for the science writer in me to learn a little more about Henry’s illness, now that I can actually stand to read medical web pages about newborn respiratory disease just PEPPERED with stats on infant mortality. Medical types and longtime viewers of ER, you’ll dig the jargon and medical links here; my sincere apologies to the rest of you. There is just no way to talk about this stuff in English. And medical professionals, if I got something wrong, please be sure to let me know. Henry’s medical team taught us well, but it’s entirely possible I lost a little something in the translation.

So, as I was saying in Part 1…

Henry arrived at 11:15 p.m. on Sunday, June 11—blue and one month ahead of schedule, but perfect, as far as we could tell. Since Will had languished in my arms for what felt like hours after his birth, I was frustrated that Henry was kept across the room from me in the minutes after his birth—I was too dazed to understand the nurses huddled around him were giving him oxygen and becoming concerned with his desperate efforts at breathing.

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Henry, 10-minutes old, June 11, 2006

Before long, one of the practitioners from the Newborn Intensive Care Unit arrived to evaluate his increasing respiratory struggle. To my secret relief, Baby Boy (as he was known then) was transferred to the NICU about 45 minutes later—his terrible, labored sounds were scaring me, and I was starting to understand he wasn’t ready to be with us.

Our nurse came by with a Polaroid of Henry on the unit, and I was shocked at the change. Instead of the sweetly swaddled newborn I had held briefly just an hour ago, he was laid out bare and exposed on a radiant warmer, with what looked like a snorkle covering the little face I had hardly seen. He was draped in wires and tubes, and the baby that had seemed so large and robust for a 36-weeker now looked painfully small.

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Henry at six hours of life, measuring 18 inches and weighing 5 pounds, 14 ounces on arrival at the NICU.
(Scale is everything—that’s a preemie-size diaper.)

In the morning, we called surprised family and friends, telling them about his arrival, and what we believed to be true—that this was a minor setback, maybe a little fluid in the lungs, and he ought to be just fine in a day or two. I had no idea then Henry wouldn’t be coming home with us at the end of my 48-hour hospital stay.

So what was wrong with him?

As one of his practitioners explained to us, “Newborns have a fairly limited repertoire. This (“this” being rapid breathing, grunting, retracting and low and/or unstable levels of oxygen saturation) is pretty much what they do when they are in trouble, and it is up to us to figure out what is causing it.”

She went on to explain that when a near-term, seemingly healthy baby with Henry’s symptoms arrives in the NICU, the one of the first things considered is transient tachypnea of the newborn (TTN), also known as wet lungs. It is usually just a mild respiratory problem, characterized by rapid breathing, that begins after birth and lasts about three days. It can be more common in babies delivered via c-section or in a very rapid delivery like Henry’s, because, well, they just don’t get all that fluid squeeeeeezed out.

His medical team hoped to pin TTN, the least complicated of newborn respiratory problems, on him, but Henry’s increasing need for breathing support and increased episodes of oxygen desaturations (“desats”) quickly trampled the benign idea of a little extra fluid in his lungs. At the same time he was started on a ten-day course of IV antibiotics for presumed pneumonia and sepsis.

Henry’s neonatologist, a truly extraordinary doctor that spent hours with us, patiently spoke with us time after time in those first 40 hours as Henry’s condition worsened. As each update session ended, he would always ask, “Do you have any other questions for me?” Our biggest questions were the most basic: “What does he have? What is wrong with him and why are we here?”

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Just hanging out

The answer was surprisingly unclear. We learned there is really no easy way to rule out pneumonia in a newborn with Henry’s symptoms, so he was treated for it whether he had it or not. Equally as likely, he showed up at the party with respiratory distress syndrome or RDS, the more baby-friendly term for respiratory failure of the newborn or the really old-fashioned moniker, hyaline membrane disease. Whatever you call it, it is a general term for the breathing difficulties endured by lungs too immature to produce adequate surfactant, an important substance produced in the lungs that helps the air sacs stay open. A developing baby naturally produces this necessary substance, BUT not until the last few weeks of pregnancy.

So how do you fix it?

When Henry first arrived in the NICU, he was started on supplemental oxygen delivered via nasal canula, but with a few significant desats and “dusky” episodes (a nice way to say your baby turned blue), he was switched to the snorkle, N-CPAP, which stands for nasal continuous positive airway pressure. We learned that CPAP is still a fairly mild form of respiratory support—a baby on CPAP will initiate every breath himself, while the pressure of the machine keeps his airways open as he exhales. The respiratory support is provided to keep the baby breathing while the lungs heal (if it is pneumonia) or start producing surfactant (if it is RDS).

But despite the support of CPAP, Henry continued having more desats. (As you sit reading this, you are probably “satting” near or at 100% oxygen saturation in your blood. The goal for Henry’s plan of care was to keep him between 90-100%. His desaturations, or “desats” were dipping into the 80s and 70s.)

We had learned to change his diaper around his tubes and leads and check some of his basic vitals during “hands-on” care, the scheduled time for changing, examining and handling babies in the NICU so they can get uninterrupted rest at other times, but he had become so fragile that even the stimulation of a diaper change sent his sats plummeting downward. Our physical contact with him was now limited to laying a hand gently against his skin without patting, rubbing or moving. The thing we wanted to do most, to hold him and touch him, was one of the most devastating things for his survival.

Careful monitoring by his team, plus more chest x-rays than I can count confirmed that Henry had a whole new layer of complications threatening his ability to breathe: on his second day of life, he developed both a pneumothorax, (an air leak into the space between the chest wall and the lungs) and a pneumomediastinum, an air leak into another part of the chest. The pressure of the air leak collapses the lung and affects the ability to breathe, so at 10:15 p.m. on June 12, at 23 hours of life, Henry’s doctor put in a chest tube (which is just what it sounds like) to drain the air leak while the lung healed.

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Henry’s chest tube is attached to that giant hose on the right, evacuating the leaked air so his lung can reinflate.

After that, it was clear that Henry wasn’t heading home any time soon, so his team celebrated his 24th hour of life by placing an umbilical arterial line, which sounds terrible, but is really a kind way to draw blood, administer meds and give nutrition to babies in it for the long haul.

The next morning, just before dawn, Henry’s nurse practioner flew into our room to advise us of his recent crisis. We were catching a few hours of sleep, our first since his birth. She pushed the door open so hard it slammed against the wall, and in those seconds before she spoke, I tried to will her to say words that I could bear to hear.

Despite the chest tube and the support from CPAP, his sick little lungs just couldn’t do their work, and the effort became too great for him to breathe on his own. At 30 hours of life, after a significant desaturation event (sats below 40% for approximately two minutes) Henry stopped breathing, and didn’t respond to tactile stimulation and blow-by oxygen, so he was intubated and put on a mechanical ventilator. We are forever grateful that Torie was at his bedside before this pre-dawn event, and responded instantly to this emergency, lessening the amount of time his brain was without precious oxygen.

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Henry on the mechanical ventilator, 32 hours of life.

Probably the most famous baby ever to succumb to respiratory distress syndrome, as many people told us once Henry was on the mend, was Patrick Bouvier Kennedy, the newborn son of President John F. Kennedy and his wife Jackie Kennedy. Young Patrick, born in 1963, was a near-term baby like Henry, but his tiny, critically-ill body became overwhelmed with respiratory distress, and he died at just 39 hours of life.

Therapies that Henry received, including CPAP, mechanical ventilation and exogenous surfactant might have saved Patrick Kennedy, but they either did not exist or were unavailable in 1963, even for the child of the President of the United States. Since the development of surfactant, survival rates for premature babies with RDS have increased dramatically and these days, most babies with RDS survive. I join legions of parents in thanking my fellow Wheaton alumna, Dr. Mary Ellen Avery, for discovering and advancing the use of surfactants in newborns with RDS. I can hardly imagine how many babies her work has saved.

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Henry all rigged up with UA line, pulse ox, IV, chest tube, endotracheal tube & vent, nasogastric tube and monitor leads. And a partridge in a pear tree.

Despite the chest tube and the full breathing support of the ventilator, Henry’s condition, already critical, continued to deteriorate on Tuesday, June 13. He was given his first dose of surfactant, but his episodes of desaturations continued and his now hourly chest x-rays were suggesting the beginning of another complication, pulmonary interstitial emphysema, and the possibility of two additional pneumothoraces (which I am pretty sure is the plural of pneumothorax. May you never need to know.).

His doctor, who had been managing Henry’s care since his arrival on the unit, came into our room, sat down and said words that are seared into my soul: “We are at the edge of what we can do for Henry here. He needs to be transported to a hospital that can offer the two remaining therapies available.”

It’s odd what you process about times like this. When his doctor inquired if we preferred New York or Boston as options for treatment for Henry, I remember thinking how thoughtful it was for him to ask which city we might like to go live in for a while, and I wondered exactly what criteria we should use to choose. And later, I remember making polite conversation with the EMTs as they waited for their precious cargo to be loaded into the mobile isolette and readied for his ambulance ride. I think I actually asked them about traffic.

But we didn’t have to choose after all, because their first choice, the acute-care NICU in our state, just an hour’s drive away, had a warmer ready for him. Henry’s doctor cautioned us that Yale-New Haven Children’s Hospital would be quite different from the intimate, 12-bed NICU at our local hospital, with constant access to the now-familiar medical team. But despite the sophisticated care he had been receiving, Henry needed a hospital offering a specialized high-frequency ventilator, called an oscillator, to allow his damaged lungs to heal. He needed the experience of a nursing staff used to caring for critically ill babies like Henry and there was the real possibility that he would need an invasive, last resort treatment for sick lungs: ECMO (extra corporeal membrane oxygenation), a heart-lung bypass treatment that takes over for diseased lungs so they can heal.

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Preparing Henry for transport

A transport team arrived, comprised of a neonatal nurse, a neonatal fellow and two EMTs. I don’t know that they wanted us there as they did the delicate work of preparing him for transport, but no one asked us to leave, even while his monitors blared warnings of his increasingly unstable blood pressure and sats. Henry’s nurse put a comforting arm around me and handed me tissue after tissue as I wept, watching the tightly choreographed movements of the transport team.

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40 hours of life—all plugged into his mobile isolette and ready to roll.

It took nearly an hour and a half to prepare his equipment and stabilize him enough to move him from the warmer to the mobile isolette—each time they were about to move him, his sats would plunge. My heart sank when he held a stable reading for about 60 seconds and his doctor said, “Go, go! Get him moving now!” I’m sure he never meant for me to hear the stark urgency in his voice, but the words are etched forever on my heart. I just kept thinking, like a mantra, they would TELL US if this baby is too sick to survive transport. They would TELL US.

Finally, after administering a paralytic medication to help him through the transport, they plugged him in and started to move. But before they left the unit the transport nurse said, “Wait! He needs a kiss from mom before he goes.” They aren’t big on kissing in the NICU (infection is one of the most deadly complications a preemie can face), so this encouragement was a gift. After a quick kiss, they closed the hatch, and rolled him towards his waiting ambulance.

(continued in Part 3)



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Angels in blue (or purple or green and sometimes in matching Crocs)

May 11, 2007

It’s National Nurses Week, and if I ever had a year to recognize the amazing nurses out there, this was it.

So thank you to the nurse midwife who, on the night Henry was born, heard something in my voice that I didn’t believe was there and coolly instructed me to get to the hospital. (I was planning to wait out those pesky contractions and see her the next day.)

And thank you to the labor nurse who didn’t flinch once as I squeezed her hands to the breaking point (and to my husband for that, too, but he isn’t a nurse :). She stayed with me and helped deliver Henry even though her shift had ended, and she didn’t go home until she had brought me a Polaroid picture of him in the NICU.

And the NICU nurses! Thank you to the NICU nurse who first taught us how to change Henry’s diaper around all the tubes and wires that draped his tiny body. And to the nurse who watched his oxygen saturation drop when she started to touch him, and calmly reached over to dial up his vent settings without saying a word. Her control of the situation, when I was too scared to even touch him, helped me stay calm, too. And when he was too fragile to be touched at all, thank you to the nurse who showed us that we could still place one gentle finger against his bare skin to let him know we were there.

And to the nurse who quietly put an arm around me, and handed me tissue after tissue as they prepared him for transport to a larger hospital, and the transport nurse who insisted that I stick my head into the mobile isolette and give Henry a kiss before he headed off to his ambulance.

And thank you to the nurse at the larger hospital who oriented us to the scary world of acute care for newborns by spending hours with us that first day. And for caring so much that she asked us to send her email updates on Henry while she was away on vacation, and for sending us a thank you note when we wrote to thank her later.

And thank you to the nurse who looked sideways at me and said, “Wanna hold him?” when just days before even touching him had caused breathing distress. She bundled up his leads and tubes and slid him into my arms. No respiratory distress. He did get a little wet from my tears, though.

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And thank you to the nurses at both hospitals that patiently took our calls at all hours of the day and night. I can remember some very warm, thoughtful and honest words coming over the phone as I sat pumping in my living room at 3 a.m. for a baby that not yet been fed. And to the nurses and lactation consultant who worked tirelessly to teach a sleepy newborn and a nervous mama how to get their acts together and nurse.

And thank you to our NICU discharge nurse, who casually said to us, “Why don’t you take his leads off, and dress him. I’m going to go start a feed and I’ll be right back.” Henry had been monitored since shortly after his birth, and we had developed an addiction to reading the numbers on the monitor, say, every minute. Take OFF the monitor leads? When we stood there dumbly, looking at her, she walked over to the monitor, turned it off and said to us, “Take him home. He is YOURS.” Nearly a year later I still have tears in my eyes telling that story.

Even though it might have been just another day at work for them, it was these incredible acts of kindness, compassion and clinical excellence that helped us tremendously, and I will remember them forever, I’m sure of it. Thank you.

. . .

And while we’re talking about nurses, Happy National Nurses Week to my college friend who must be the best labor and delivery nurse out there. If my labors lasted longer than a few hours, I would have been honored to have her by my side, and I envy the lucky moms who have had her at their labors. And to my aunt who is retiring as a nurse this year, but who has no doubt brightened the lives of all the patients who have had the privilege of having her as their nurse over the years.

Got something to say to the amazing nurses in your world?


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