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.
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.”
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.
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.
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.
And it was wonderful.
I had only held him for a short moment after his birth and then not again since.
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.
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!
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.
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.
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.
Taking off the monitor leads.
His rig at the beginning—day of life #2
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.
Henry in his first hour home, day of life #16.
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!