Jaundice- already

We knew that Bo's IV feedings could lead to liver injury, we just weren't expecting it to happen so soon. We had been home a little more than a month, when his liver started to get hurt. You can see the jaundice in his skin and the whites of his eyes. Our visiting nurse said that she had some kids whose livers were so injured that they cried yellow tears. Thankfully Bo's liver has not been that badly injured. These pix were from mid-August (I'm trying to catch us up to present day, and I don't have that many pix from August with me).

Because of this, we accelerated our temporary move to Boston, where we were hoping to get an alternate lipid (sourced from fish instead of plants). The theory (contrary to popular belief) is that it is the plant-based lipids that cause the liver damage. But before we could see for ourselves, we had to duke it out with a) our insurance, b) Bo's secondary insurance (Michigan Children's Special Healthcare), and c) Bo's GI specialist. There were phone calls, faxes, visits, clinic appointments, emails and more phone calls. Meanwhile, Bo's liver is slowly disintegrating, and he is turning a brighter shade of yellow and the whites of his eyes are turning dull and green (at the corners).

Home at last

We brought baby Bo home for the first time in his life, July 9, 2007. Not only are we first-time parents, but our son has very high-tech special needs. So we were faced with late-night diaper changes, in addition to the terror of changing the dressing to his IV line ourselves (weekly). Luckily we got a stellar visiting nurse who came every day for a week, and weekly thereafter.

An explanation of Microvillous Inclusion Disease (MID). The finger-like protrusions that are microvilli are supposed to be on the surface of the intestines to give surface area for absorbing nutrients from food you have digested. His microvilli are apparently in these bubbles, or inclusions, imbedded in the tissue instead of on its surface. His biopsy looks a lot like the one on the right. Since it is so rare, there really isn't any conventional wisdom or body of knowledge around it, or the patients who have it. The belief is that none of their microvilli are in the right place and that these kids cannot absorb anything. But why does oral tylenol elixir work for Bo, then? There's no real explanation from his doc. The oldest living kids in the US are in their early 20's. They are even rarer than Bo!

At the Hive of Evil, aka Mott Children's Hospital

Jose and I were beside ourselves, wondering if he would make it to the next month or first birthday? The docs who diagnosed him told us that we had to seriously consider a small bowel transplant and probably a multivisceral transplant because the IV nutrition usually damages the liver excessively. And if his liver didn't explode in the first year of life, then he'd probably succumb to a line infection. The first MID patient they diagnosed went into liver failure by 4 months of age.

He's almost 5 weeks old here.

Tinier at 2 weeks than at birth

After 3 nerve-wracking weeks in the NICU at our local hospital and another 2 at the large university across the state, they ruled out all the more common causes of watery, explosive diarrhea that had contributed to his almost 25% loss of his birth weight, and determined that Bo had MID. There are something like 60 known cases in the entire US and less than 200 in all of the EU.

Welcome, Bo!

Jose and I welcomed our son, Bo Tseun Bernabe Verlarde-Chan, into the world on Sunday, June 3, 2007, weighing in at 6 lbs 13 oz. and 20 inches long. GUIDE TO HIS NAME:"Bo Tsuen" is of Chinese origin. The transliteration is of the Cantonese pronunciation. Bo means "treasure or treasured", and Tsuen is a word for "big river" and is his generational name. Bernabe is from the Bolivian side of the family.

He was born with a very rare and life-limiting condition that took 5 weeks and two hospitals to identify: microvillous inclusion disease. Basically, his small intestines cannot absorb the amount of nutrients he needs to live, although they do create all the enzymes needed to break down food. The microvilli, or finger-like protrusions that give the intestines all their surface area are not where they belong on the surface of the intestines, but are stuck in these bubbles (or inclusions) imbedded in the tissue instead. We were told that these children often do not make it to their third birthday, but that it wasn't a death-sentence (huh?).

To infinity and beyond

The vastness of my belly is truly alarming. While I only have 2 weeks left in the office, it is hopefully going to be at half-time to accommodate my excessive edema (feet full of fluid). These pix are from yesterday, ringing in at 34.5 weeks. I really cannot get any bigger. No, really. I'm uncomfortable sleeping, which is very sad, as that is one of my most favorite activities. And, if you are asking yourself if there are twins, the answer is no. There is only one person in there. We checked (3 ultrasounds already).

The Vanity Ultrasound

We couldn't resist and got 3d/4d ultrasound pictures and movies. I'm considering YouTubing the avi files, but am also a little squicked out by that prospect. Here are some shots of our very own Sparkle/Sprinkle Primavera in utero.