Five pounds, 1 pence

It's all smiles for Miles as we count down the rest of 2006. (And by the way, thanks, Miles, for that unexpected tax deduction!)

The young man has been growing with leaps and bounds. It seems like just yesterday we were excited that he hit 4 pounds. As of tonight, he weighs in at 5 lbs., 1 oz. There's a chubbiness to his cheeks that suggests one thing: baby.

Yesterday, Miles made a big move--from the incubator to a regular NICU crib. This means he's doing a better job of maintaining a steady temperature and doesn't need quite so much protection from the outside world (or at least from Room 5 of the NICU). The new digs make it much easier for his parents to gawk at him as well. On the downside, Miles has less noise insulation from all the hustle and bustle of the NICU than he used to. But it doesn't seem to be affecting his sleep, which has become increasingly tranquil.

-Dean

A Merry Miles Christmas

And a Happy Boxing Day to boot. As of today, Miles has been CPAP-free and going strong for a week.

Although we of course wish that Miles could have joined us at home for the holiday, he must have enjoyed a hearty Christmas dinner at the NICU, because he now weighs an impressive 4 lbs., 11 oz.

We brought his stocking in to the hospital to open with him Christmas morning, and he noted with thanks lots of nifty items both from us and from his many admirers. Nevertheless, Miles was a model of true Christmas spirit, showing far less interest in his gifts than in a warm snuggle with mom and dad.

-Dean

On the Catwalk

Miles is really settling into a nice pre-Christmas groove over at the NICU. Last night he was up to a whopping 4 lbs., 4 oz. And our overseas readers can look forward to his surpassing the 2 kilogram mark any day now.

We've received such an enthusiastic response to the "Miles Santa Hat" pictures that we've posted some more over at Google Picasa. The display format is better than here at Carepages, plus you can download your favorites and even order prints (for those die-hard fans out there).

Just click here or paste this link into your browser's address window:

http://picasaweb.google.com/deanfalvy/MilesSantaHat

-Dean

Partridge in Pear Tree

Miles continues to roll along, cuter by the day. There's also more of him: 4 lbs., 3 oz., to be exact. His breathing since coming off CPAP has been a model of consistency. In the digestion department, things are moving slowly but steadily (I'll spare you further detail).

The young man is looking pretty content, no doubt looking forward to his first Christmas.

-Dean

High Mileage

Miles had a great day today. First, he went off CPAP in the morning. That always makes him happy. More importantly, he did not have any breathing-related "incidents" all day, which means he gets to stay off CPAP. Already, he seems stronger than he did before the surgery, and certainly much better than he was in the immediate aftermath.


Miles has resumed his milk feeds (albeit at a very gradual rate) and is digesting well. To top it all off, he enjoyed being held by his mother.

Keep up the good work, Miles!

-Dad

Happy Birthday, Miles

Miles celebrates his one-month birthday today. And what a month it's been.

Most kids his age still haven't gotten out of the womb. Miles, on the other hand, not only has had heart surgery--according to the nurses, he's the heartthrob of the NICU. And, judging by all the faithful readers here, he has his own on-line fan club.

We keep hearing about people whom we don't know, who don't even know people we know, but who know people who know people who know us, who have enlisted their congregations, book clubs, yoga classes, etc. in directing prayers, meditations and assorted good thoughts for the benefit of Mr. Miles. To all those people, we say thanks. You know who you are (even if we don't).

As I told Lisa last night, it appears that Miles is already more famous than either of us will ever be. Barack Obama, watch out!

The birthday boy himself is closing in on the 4-pound mark. As of last night he was at 3 lbs. 14 1/2 oz. I believe (but am not quite sure) that there are 16 ounces in a pound. How they came up with that, I have no idea.

Miles is still recovering from the after-effects of surgery Friday afternoon. He was fairly sedated and on a ventilator until early Sunday morning. By noon, however, his fiestiness was back in full force, as the respiratory therapist found when he tried to change Miles' CPAP from mask to prongs (which Miles has never particularly liked). Miles battled me, the RT and his nurse to a standstill, and thereby earned himself an opportunity to try the more comfortable nasal canula in lieu of the CPAP. Unfortunately, he was too tired from the surgery and CPAP wrangling to make much of a go of it. After about an hour he was clearly laboring too hard with his breathing and reluctantly submitted to a return of the CPAP (albeit with the mask instead of prongs -- so his struggle was not entirely in vain).

After all his ups and downs yesterday, Miles looked much more relaxed and content this morning. He is getting back on milk feeds (no doubt a welcome development after a week of IV nutrition) and surely gathering strength for another CPAP liberation bid.

-Dean

Out of the Woods

We are pleased to report that Miles had successful surgery this afternoon to close his PDA valve.

The surgeon, Dr. Woods, informs us that the procedure went smoothly. They already have the results of the post-op x-ray, and everything looks OK.

Miles is resting sedately (or rather, sedatedly). He is breathing normal room air (which consists of 21% oxygen, in case you were wondering). He will be on a ventilator for a day or two as he recovers.

Over the course of the past few days, it became increasingly clear that the surgery was necessary, as Miles' heart murmur grew more pronounced and his breathing became more labored.

Even though we felt very confident that the surgery would go well, it is still a great relief to have it behind us. No doubt young Miles would second that emotion.

-Dean & Lisa

P.S. Miles is up to 3 lbs., 13 oz (plus whatever his PDA clamp weighs).

Ductus Redux

Miles continues to motor along on his 4th straight day off CPAP. And yesterday he weighed in at 3 lbs. 10 oz., marking the gain of his first full pound since birth. Congratulations, Miles!

So what's the catch? Well, over the last week, the nurses have reported that Miles' heart murmur is getting more pronounced, and yesterday an EKG showed that his PDA (patent ductus arteriosis) is back and getting larger. This essentially means that his heart is not pumping as efficiently as it should because blood flow is being diverted through the PDA. This in turn can cause digestive complications, among other things, although Miles' digestion has been fine so far. More info:

http://www.heartpoint.com/congpda.html

Since earlier efforts to close the PDA using medication have apparently not been successful, a ligation procedure will be necessary. It's not scheduled yet, but it will occur by the end of the week.

Although we're obviously concerned about Miles' having to go through this, we are reassured that the surgery is considered relatively routine, and hopefully will not knock him off stride for more than a couple of days. He certainly looks and acts much stronger than he did ten days ago, when the question was last under consideration.

So, we'll just keep our fingers crossed that everything goes well. Watch this space for further updates.

-Dean

They Grow Up So Fast!

Miles is now weighing in at a solid 3 lbs. 7 oz.--hardly the little chipmunk he was three weeks ago. His feedings have been steadily increased over the past week.

Yesterday morning the docs decided to give Miles another whirl off the CPAP. We told him to seize the day, since we know he's not thrilled to wear that mask on his face all the time. But he had to show that he could remember to breathe.

So far, so good. He's had some minor "episodes", but far fewer than he had last weekend. He looks much more comfortable with a nasal canula than with the CPAP, and as an added bonus we get to see much more of his cute little face. Plus they moved his gavage line from his mouth to his nose. No, we don't want to imagine what it's like to snort one's breakfast, but he certainly looks great without a tube in his mouth.

Finally, he's now wearing his little preemie clothes. Quite the fashion horse.

So, steady progress on all fronts. We're going to stay the course.

-Dean

Au bout de souffle

Miles had a good weekend off the CPAP, but by Sunday evening he was working a bit harder and having more "de-sat episodes". So he went back on the CPAP Monday morning. Miles is not exactly thrilled with having to wear all that headgear again, but it seems to have been the right call, as the last couple of days have gone very smoothly. The docs say this is all very typical. They will give him another try off CPAP in four or five days.

In the meantime, digestion is going well. Miles now tips the scales at 3 lbs. 3 oz.

Milk, it does a body good.

That's the news for now -- stay tuned for further updates.

-Dean

Breathing Space

It was a big weekend for our little lad in NICU. Saturday morning, Miles got another trial off of his CPAP.

For those joining late (or challenged by acronyms), CPAP stands for "Continuous Positive Airway Pressure". For two or three days after he was born, Miles was on a full-blown ventilator. Then, since he was able to do a fair bit of the work of breathing on his own, this was replaced by the less intrusive CPAP. This device kept a small amount of air flowing through his lungs even on the occasions when he fell asleep and forgot to keep breathing (a fairly common event for preemies). Still, Miles had to wear a small mask most of the time, along with elaborate headgear to keep it in place. We're only guessing from the fact that he tended to cry and grab at the CPAP when the respiratory therapist would put it on, but we think Miles wasn't particularly happy with the fashion statement. (Hence, most of the pictures we have posted were taken when he was on brief CPAP breaks.)

Last Sunday, Miles spent a few hours off CPAP, but had enough "episodes" (where he forgets to breathe and requires some stimulation--like tickling--to get his heart rate back up) that the doctors decided he was not quite ready for prime time.

So this weekend's test was eagerly anticipated. And we are pleased to report that 36 hours later, Miles is still off CPAP and breathing on his own! The CPAP has been replaced by a nasal cannula, which can supplement his oxygen when necessary, but Miles is now responsible for keeping the airflow going. He has had a number of episodes, but the doctors are pleased enough with his progress to keep him CPAP-free for the time being. They caution, however, that it's not unusual for a kid in his shoes to get tired after a few days off CPAP and need to go back on for a spell.

Notwithstanding this caveat, we are thrilled at this latest bit of progress, not least because we can now see much more of his cute little face.

Lisa was able to hold him again last night for an entire hour. The nurse even had us each kiss him goodnight. It was the first time that the we had seen him at such close range. Yep, he's still cute and still quite small, however he does weigh in at 3 lbs 2 oz now!

-Dean and Lisa

Settling In

As we mentioned yesterday, Miles is looking a lot more relaxed these days -- even kicking back for a casual photo shoot.

Lisa got to hold him again today. She reports that he was sucking on his hand the whole time, which certainly sounds cute.

His feeding is going reasonably well, although occasionally the milk drip is halted to clear his digestive tract. Miles is up to 3 lbs. 1 oz. today. He's not quite ready to play offensive line--but maybe free safety.

-Dean