Fifteen Days Adjusted

Over the past week, we have been reminded that you don't stop being the parents of a preemie when you leave the hospital.

Things were going swimmingly until Tuesday morning. I was quietly munching my cereal at the breakfast table, when I heard Lisa issue an urgent distress call from the upstairs bedroom. By the time I hit the top of the stairs, she had given routing instructions: "Get the bulb syringe!" I dashed to the nursery to fetch this little plastic item. When I reached the bedroom, Lisa had Miles face down over her knee, cajoling him to breathe. She took the bulb syringe and plunged it into Miles' mouth and nostrils, sucking out bits of mucous. Finally, Miles started to quietly sputter and it was evident he was breathing again. He slept heavily the rest of the afternoon and did not recover his energy until the evening, but otherwise showed no ill effects from the incident.

Lisa explained that Miles had been laying next to her in bed, just coming out of sleep, when she noticed that he suddenly stopped breathing and began staring into space, his eyes half shut, limbs flexed out tensely. When she inserted the bulb syringe into his mouth, his tongue was blue. Not a good sign. Fortunately, she had been right there to revive him. But revive him from what? That remained the question of the week.

Initially, we suspected that he had been choking. Miles has some digestion/reflux issues, and it's possible that this triggered the episode. But over the next few days, after consulting with a multitude of doctors, a number of competing hypotheses emerged, such as a seizure or an apnea event.

Needless to say, we were completely shaken by this event. We had been home for ten days, and largely settled into a routine. Previously, Miles' handful of lingering medical issues had seemed very manageable. Suddenly, we feared that this incident could have resulted in tragedy if Lisa had not been in the room. We had to puzzle over what had occurred and whether it might happen again. Suddenly all the nervousness and uncertainty of Miles' first night at home returned, with an added layer of menace. Any sense that we were in control of events vanished.

Lisa took Miles to see the pediatrician that afternoon, and a string of appointments followed over the next few days. Although there was no repetition of the incident, as a precaution Miles spent Thursday night under monitoring at Children's Hospital. After all of his struggles in the NICU and Special Care Unit, we felt terrible about readmitting Miles to the hospital, even for just a night. But it turned out that Children's is a bright, cheery place, and Miles enjoyed a fairly comfortable, uneventful stay.


Then Friday night we participated in a "sleep study" at Overlake Hospital. This involved Miles being hooked up to a spaghetti of monitoring cables while he attempted to amass the required six hours of sleep notwithstanding his obvious discomfort. Mom and Dad also struggled to sleep in an adjacent bed, with less discomfort and less success. Lisa claims that this was one of the worst Miles days thus far . . . he was inconsolable with over thirty probes pushed onto the surface of his little bald head.


Nonetheless, the monitors gathered a vast array of data on Miles' breathing, heart and brain activity. We are not sure whether any of these tests will tell us what happened last Tuesday. Actually, there is only a very slim chance that we will ever know what happened to little Miles on Tuesday. We can only hope that it was a one-time event, or at least that it was somehow less serious than it appeared.

We took Miles home again Saturday morning. After a long sleep, he seems to have recovered his bearings and looks fairly relaxed. His feedings are going more smoothly. This morning he took his first full meal via breast. He continues to grow in leaps and bounds, having cracked four kilos (8 lbs., 15 oz.) Gradually, our nervousness is receding a bit as we return to our new routine. Still, we are a far cry from breathing easily.

We are discovering that parenthood is a very uncertain business. Part of it is learning to live with a certain level of fear. At the same time, there's no joy that compares to having our little boy home safe with us. We just have to do everything we can to keep him that way.

Project Muffinhead: The First Two Weeks at Home

(Yawn). We apologize to our faithful readers for the recent paucity of posts. It's like we've purchased a new alarm clock for which we have not yet read the instruction manual. We've got a.m. mixed up with p.m., when we hit the snooze alarm it just turns up the volume, and the classical music station has been replaced with white noise. In short, we've been bleary-eyed, somnambulant zombies for most of the past ten days.

But happy zombies, of course. Miles is a delight both asleep and awake, even if we find it hard to distinguish between the two states ourselves.


We've definitely got our hands full with this little fellow. Mom and Dad felt they showed considerable devotion in their twice daily visits to the NICU and ISCU, not to mention the psychological exhaustion the process entailed. But let's face it, that job wasn't exactly 24/7. And with a bevy of highly skilled nurses within a diaper's throw at all times, there was a wide margin for error. No more. Now Miles' safety and well-being must be our constant practice as well as preoccupation.


It came as no surprise that our lives as new parents are revolving in a very tight orbit around little Miles. But it is remarkable how much of the routine is centered on milk--and the extraction, storage, heating, administration, processing and disposal thereof, each step of which consumes more time than one would have thought possible, with each cycle flowing inexorably into the next.


Amidst this milky haze, the wonderment of having our boy home is still sinking in. We are still doing a double take every time we realize -- in the middle of giving Miles a bath or having dinner with him seated in a place of honor at the table -- that he really has come home from the hospital.


Last week, Miles paid his first visit to his pediatrician's office. For a boy of his age, of course, Miles has considerable experience with the medical profession, so he played it pretty cool. But he didn't have much experience with mirrors, which made the initial encounters with his own image pretty darn interesting:


-Dean

(In our next installment, an update on medical news and all the latest Project Muffinhead developments).

Miles' First Walkies

As much as Miles' horizons were broadened by the move from Swedish Hospital to our house, we were still talking about a kid whose experience of the world was limited to a handful of indoor spaces.

Well, no more.

Miles has taken his first breaths of fresh air in the outside world, as we took him for a spin through Ravenna Park in his new stroller.

Miles was impressed. "It's a big world out there," he commented. He's got that right.

A Message From Miles

Miles has asked us to thank all the doctors, nurses and staff at Swedish Hospital who helped him along through the eventful first 84 days of his life.

There were a lot of poignant moments on Friday as Miles said goodbye to nurses who cared for him around the clock in the Special Care Unit, the NICU, and (before he was even born) in the Antepartum Unit.

We could tell that Miles was a special favorite of many of the nurses. What were the clues? Well, they repeatedly told us he was, and vehemently denied that they say this about all the babies.

We are looking forward to showing off a growing Miles to the nurses at future NICU reunions. In the meantime, we hope they'll check in at this site from time to time to see their handiwork in action.

-Dean

No Place Like Home

After 22 days in the Antepartum Ward, one very long day in Labor and Delivery, two days in the Postpartum Ward, 56 days in the Neonatal Intensive Care Unit and 28 days in the Infant Special Care Nursery, we are home.


After three days on intravenous magnesium sulfate, countless ultrasounds, nine days in the Trendelenburg position, 19 days with a catheter, one amniocentesis, 15 hours of pitocin-induced labor and eight minutes of pushing, we are home.

After five days on a ventilator, three blood transfusions, one patent ductus arteriosus ligation (heart surgery), six weeks on a CPAP machine and ten weeks of gavage feeding, we are home.


There is no place like home.


February 9th is a day I will never forget. Our neonatologist, Dr. Jennings, took great pleasure striding into our room and saying, "I bet you are really disappointed that I am going to discharge you today". With my son in my arms, I broke down trying to absorb the magnitude of what this meant for little Miles. His life could finally be filled with the love and peace that Dino and I have so desperately wanted to share with him.


While I am filled with the overwhelming joy with having our son all to ourselves, I am also quite cognizant of the difficult journey that is just behind us. I would have never made it as I had without the courage and support of my wonderful husband and also our family and friends. Words are hard to find to express my gratitude for all of the loving support that we received from the very beginning. Thank you from the bottom of my heart for the outward and constant encouragement you gave to Dean and me during our challenging journey. Knowing that so many people were there for us allowed us to focus on little Miles who needed us more than he will ever know. It has taken a village to bring this boy home, and again, I lovingly thank you for being a part of it.

-Lisa

The Magical Nursery Tour

Join Miles as he explores his new digs.

The Eaglet Has Landed

Home at last, home at last, Miles is home at last!

Hostage Release Imminent

SEATTLE (Feb. 9) -- Negotiators announced a breakthrough this morning in the Miles Falvy hostage drama at Swedish Hospital.

"Release of the boy is imminent," said one highly placed intermediary, who cautioned that the deal could still fall through. "The doctors have signed off, he has passed his physicial therapy exam and car seat check." What could stop him now? "Maybe unpaid parking tickets," the official replied.

Subscribe to Automatic Updates

While feedback on the new Miles Files site has been largely positive, a number of our original CarePage readers have lamented the lack of automatic e-mail notification of updates to the blog.

Well, our readers' wishes are our command here at The Miles Files. We have listened, and we have heard you. Today we are pleased to offer you the option of receiving automatic e-mail notification when the blog is updated.

If you would like to receive these updates, just send your name and e-mail address to milesfalvy@gmail.com. An update will be sent to you via a googlegroups message board.

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-The Editors

All the News That's Fit to Blog

Folks, there's a lot of news to report tonight in Miles World. So sit back, relax and enjoy the show.

In our top story, a senior official at Swedish Hospital has confirmed that Miles Falvy could be released to his parents' custody as early as Friday, February 9. The official, who requested anonymity because he does not wish to be subpoenaed, cautioned that the release was contingent on Miles' continued success with ad lib feedings. These unscheduled feedings, which began yesterday, have been a big hit so far.

Miles himself declined to comment in connection with this story, although he did burp.

In a pre-dawn bombshell, Special Care Nurse Margaret announced that Miles had pulled out his own gavage tube. As with the nasal canula a few weeks ago, Miles has assumed authoritative control over his own care. Once again, the doctors agreed that the tube was no longer necessary, and his bright and shiny face is finally unobscured by medical devices. (Film at 11). Congratulations, Miles! We can't imagine how much more comfortable that feels. (Although I suppose if we wanted to find out, we could just put a tube down our own noses for two months.)

And, for the first time since he was born back on November 18, Miles is spending the night with his mom. Lisa and Miles have moved into a private room in the Special Care Unit, where she will take care of him all night and all day tomorrow. "I'm not leaving without my baby," Lisa vowed. Dad plans to follow tomorrow, which (not uncoincidentally) happens to be Miles' original due date.

So hold on to your hats, and watch this space for breaking news!

Tuesday Night at the Improv

After many weeks on a fairly rigid schedule of being fed every three hours, Miles moved to "ad lib" feeds today. That means he gets to wake up when he wants, and feed when he's hungry. Sounds like the good life, doesn't it?

All of this means the big day is getting closer...

Eight Pounder

Before a hushed crowd in the Special Care Nursery tonight, Miles took aim at eight pounds. He sailed over the crossbar with room to spare, landing on the scale with a Fosbury Flop at 8 lbs., 1 oz.

Mom and Dad couldn't be prouder!

The Conductor

Our young maestro tries his hand at some orchestral maneuvers.

Hostage Still Captive

Efforts to negotiate the release of our little hostage have not yet borne fruit. His captors insist that he must be able to consume all of his meals via the bottle for two entire days before they will consider a release. There are other factors at play as well, but the "nippling" requirement is the biggie. He's close, oh so close. Meanwhile he continues to grow bigger and bigger in the confines of Nursery Eleven in the Infant Special Care Unit. He's up to 7 lbs. 13 oz. Something's working as we expect him to tip the scales at eight pounds in the next several days....

-Lisa