Escape From the Rainforest

Caught on film: Miles executes a tricky auto-reversal to elude the confines of his play area.

Laser Floyd

Another week, another medical procedure. No mortal danger this time, just a visit to the dermatologist at Children's Hospital to treat Miles' hemangioma with a laser. This very noticeable feature adjacent to Miles' upper lip has been growing steadily since a few days after his birth. Although hemangiomas are not dangerous, they can grow to be rather large and take 2-10 years to fade away. The larger a hemanioma gets, the more likely it is to leave scarring. In Miles' case, the hemangioma is present not only above his lip on the outside of his mouth, but also to a lesser extent on the inside of his mouth, which could interfere with his ability to properly suckle. In order to limit the physical (and eventually social) discomfort that might ensue, we decided to set up Miles with the laser treatment.


Our friendly neighborhood pediatric dermatologist, Dr. Francis, gave Miles his first taste of the laser on Thursday. We were a little nervous about subjecting Miles to yet another encounter with modern medicine, but the whole thing turned out to be far less traumatic than a typical blood draw. Our major task was to help hold him still while the nurse blindfolded him ("He won't like this") and iced his lip. Then Dr. Francis zapped the hemangioma a dozen times or so with the laser. Just to set our minds at ease, she gave me a sample of the laser on the back of my hand. To my relief, I could barely feel it.


Miles was relieved, too, when it was all over. We were told to expect no immediate change in the size of the hemangioma, as this first treatment was merely designed to arrest its growth. Miles will go back several more times to begin rolling the hemangioma back--yet another chapter in our saga of medical wonders.

Changing Table Follies

Say hello to the Ten Pounder.

Alligator on the Loose!

Woodland Park Zoo has reported the escape of a dangerous alligator. All North Seattle neighborhoods should be on the lookout.

Quarantined

It's been an odd week in the Falvy household as I battle to shake off a head cold. Being sick is never pleasant, but now we have the added challenge of ensuring that the affliction doesn't make the epidemiological jump to Miles. Given the delicate state of his preemie breathing apparatus, a bout with respiratory syncytial virus (RSV) could be a very serious setback. Miles has received several anti-RSV innoculations, but the risk is still considerable during the winter cold-and-flu season. That's why we've avoided taking Miles to public places, and have exercised great vigilance over the health condition of his visitors.

Daddy's cold, therefore, poses a clear and present danger to Miles' security. The solution? Quarantine.

The paternal entity has been encouraged to spend as much time at work as possible. When home, he has been banished to the basement for most of the past week, and compelled to don a surgical mask when venturing above ground. Though kept well-supplied with meals, snacks and DVDs, he's been a bit lonely.

But by far the heaviest burden has fallen on Mommy, whose already preponderant share of the day-to-day parenting has been extended around the clock. She has been holding up quite well under the circumstances, but is understandably eager for her partner's return to the fray.

Fortunately, the worst of the cold has passed, and so far Miles and Lisa appear to have avoided infection. Let's hope it stays that way, so Daddy and Miles can get reacquainted!

-Dean

Bjørn to Run

Miles has gone mobile! This week he completed his first circuit around Green Lake.

Perhaps more notably, during "Tummy Time" in his Rainforest play set, Miles actually turned himself over onto his back, completely unassisted. He has yet to repeat the feat, but we will have to be wary of this new and formidable power.

-Dean

The Wedge

The past week has been smooth sailing in Miles World, relatively speaking.

In medical news, there have been no major incidents to report. The Very Serious Event of Feb. 20 has not reoccured, thankfully. Choking as a result of reflux is once again the leading theory of the cause. As a result, Miles is taking some tasty anti-reflux medication. Instead of spending his nights in the cradle, Miles now is sleeping at about a 30 degree angle, thanks to The Wedge:


The Wedge was custom built for Miles by Occupational Therapy at Children's Hospital. It looks a little like something you'd find in a medieval dungeon, except that it's made out of foam.

It may not look terribly comfortable, but Miles does seem to be sleeping better since the arrival of The Wedge.


Nevertheless, his habits remain decidedly nocturnal. We are amazed at how peacefully he can spend his days in epic naps, interrupted only briefly for feedings. Then suddenly he perks up around midnight and wants to stay up all night partying.

I tell ya, these kids today.

-Dean

Project Muffinhead Update

This week we feel almost as though we are back to normal. We have lingering fears that will likely last a lifetime. Someone said to me over the last week, "Well, that won't be the last time you save your son's life". It was a poignant statement and one that somehow normalized the intensity of our situation.

The last week has been filled with more medical appointments that one would think possible for a little being pushing nine pounds. Miles has been prompt and quasi-present for all of them. I think his favorite appointment would have to be a tie between chest x-rays (which involved sleeping on his side) and the consultation with his sleep doctor (who knew there was such a specialty!) which in his case involved lots of sleeping while mom and dad asked questions.

What we mostly know is that we will never know what happened last week. We have gathered quite a bit of information about our son, which quite frankly, makes me feel more comfortable about some of his concerning behaviors . . . . oh you know, things like wheezing, pulling breaths against his chest, rapid respiratory rates, head bobbing while breathing and not to mention a few others.

The best news is that the sleep study suggested that Miles' heart rate, oxygen saturation levels and brain activity were all very normal. That led us to discount somewhat a couple of the possible explanations (seizure, apnea) for last week's episode.

Miles has a mild form of bronchial pulmonary displasia (BPD). This is a chronic lung disease that he will outgrow. It is stiff lung tissue that is a result of being on prolonged assisted oxygen. As little Miles grows new lung tissue, he will outgrow this condition. His condition is mild enough that it will not be treated at this point. We will visit his pulmonary doctor in six weeks to make sure that the condition is not worsening. It reinforces our need to be vigilant about his level of exposure to public places. Dean and I have also adopted mildly compulsive hand-washing practices.

Miles also has reflux or GER. This is likely the cause of his episode last week. I believe this only because I saw a similar, though more mild, event occur yesterday that was clearly a reflux event. Miles' reflux relates to the immaturity of the muscles around his esphonageal sphincter and his windpipe. It is possible that he has liquid (as in breast milk) pooling up between the two, which ultimately causes him to choke. We will undergo another test to determine if this is the case and if so, the treatment is an easy one--thickening breast milk with rice cereal to make it easier for him to completely swallow. Miles' choking episodes are very severe and will require him to sleep on a specially fashioned inclined wedge. Somehow I find it ironic that I had to lie with my feet up in the air in order to get him here, and now that he's here, he has to lie with his head up in the air.

Yes, going to sleep at night is a little scary, but we take the precautions that we can and we believe as we have all along that our son is going to be ok. So we shut our eyes and know that the little Muffinhead will be letting us know sooner rather than later that he's alive and thriving and ready to EAT!

Every sleeping breath Miles takes is punctuated by auditory accompaniment. Many sounds remind us of rare bird noises and other tracks simply sound like a family of chain saws. When things go quiet . . . we wait for a few seconds and take a closer look. So far, so good.

Is Miles breast feeding? Sort of.... Miles came home from the hospital drinking breast milk from a bottle. Thanks to the wonders of pumping, we have several thousand ounces stored in a deep freeze in our garage. So, if breast feeding doesn't work, he will be drinking the stuff for a while! But really, Miles and I have been working hard on transitioning most of his feeds to breast. We have a breast-feeding scale in our home on which we weigh him before and after each breast feed to see exactly how he has done in this department. We are working closely with a lactation consultant on our transition plan. As like all things with Miles, it's a little bit forward and a little bit back. I am confident that we will find a spot that feels right for us. Yesterday morning, Miles had his entire breakfast from the breast (which we have not duplicated yet, but we are hopeful).

Over and over again, Dean and I are showered with well wishes, prayers and compliments of how we are handling our situation. We are so thankful to have this support, and don't know where we would be without it. As a result, we are doing really quite well. Yes, a vacation has a certain draw to it right about now, but life is not so bad for us. Every condition that our son has been diagnosed with is something that he will almost certainly outgrow. Finally, we are able to settle in a bit in our home and begin dreaming about sharing the world with the littlest Falvy. Life isn't so bad.

-Lisa