The 511 on Xavier
Greetings and hello to everyone.
Well, Praise God! Xavier was a champion today at the doctor!
He started out this morning being generally quiet about not eating. That's a big PTL!
He was calm and quiet during his ultrasound, so calm, in fact, that the sonographer did not have to rush. What generally takes :30 minutes went :45 because she could take her time. This was a minor miracle because Xavier was shirtless, a state he does not like and generally lets you hear about it.
The imaging was very clear and we got to see his internals in some detail. It's amazing how small his organs are and nearly inconceivable how tiny some of the duct work and piping are!
Before getting in to see the gastroenterologist, Xavier got weighed and measured. He weighed 5 pounds 1.1 ounces (2271 grams), and his length measured 17.3 inches (44 cm).
After this, we met with the gastroenterologist. It was disappointing that they did not have access to Xavier's records yet, so we had to fill her in "from the beginning." (the blog was a useful tool for numbers and dates). After collecting all we thought to tell her, the doctor left to find the resident gastroenterologist.
Dr. Shikha Sundaram, the resident gastroenterologist, after digesting all the notes taken, met with us. She explained there is a (very long) list of things that might be wrong with Xavier's liver. The one topping the list (and the most scary) is something called bilirubin atresia. This is a cascading scaring of the bilirubin tree within the liver.
The bilirubin tree is a tree of ever-branching vessels which infuse the liver. All the branches join into larger trunks leading up to the main trunk that feeds into the gall bladder. Scarring begins in the smallest branches, closing off those branches. This spreads into the larger branches, cascading all the way to the main trunk.
The only remedy for this problem is surgery, where the surgeon hunts down branches that are still open and then sews these ducts directly into the small intestine. This ensures bile can get to the intestine.
Dr. Sundaram is fairly sure Xavier does not have bilirubin atresia. She said she is 50-50 on her certainty. Both Rebecca and I have the strong sense Xavier does not have bilirubin atresia. The problem with bilirubin atresia is that it needs to be corrected within the first three months, which Xavier is just at the edge of. The reason for this is by this time, too many of the duct branches have scarred over for the surgery to do much good.
So, how do we know with better certainty about bilirubin atresia? A liver biopsy. Xavier is (tentatively) scheduled for one this Wednesday. The procedure will take about 5 minutes, but much more time will be required to put him under anesthesia, and do the ultrasound to find where the best place to push the needle to get to the liver. It also means Xavier will be spending the night at the hospital so they can watch his recovery.
The biopsy (the results of which will take three or four business days to get) will do one of three things. It will either completely show there is no bilirubin atresia in Xavier's liver, it can suggest there is no bilirubin atresia (but not conclusively throw it out as a possibility), or it can definitely show bilirubin atresia.
The middle, inconclusive result could suggest what is common with preemies who have TPN feeds (that's the vitamins and nutrients that were fed through Xavier's PICC line his first two weeks outside the womb). It is common for the TPN to encourage tiny crystals to form in the bile ducts, clogging them up. Basically, tiny gall stones. The cure for this condition is time. The liver will eventually clear them out.
These are the top two contenders for Xavier's liver problem, but there are another 298 plus possibilities.
In preparation for the surgery, more blood had to be drawn via a vein in Xavier's arm. It was here Xavier broke down a little, but who can blame him? It was interesting that it took two people to hold him down while the blood was drawn. Both the sonographer and the lab nurse were amazed by how much strength he has, especially for his size.
Great is our God, Who has not brought us this far to abandon us now. We thank you all for your prayers.
A Stork Bite
Hello to everyone.
Saturday night, Rebecca began to feel the ominous "tickle in the back of the throat" sensation. So, I told her I would watch Xavier, and she headed to bed, hopefully to sleep off whatever was trying to attach itself to her.
Xavier and I went to bed about 1:00 AM and the two of us were up again at 5:00. Rebecca took the 8:00 AM feeding to let me sleep, and I officially staggered out of bed about 10:30. I love my wife. She informed me she was going to wake me at 11:00 so I didn't sleep the day away. She knows how I hate wasting days like that, and she knew I wanted to finish pulling and connecting a cat-5 cable I started Saturday during the times Xavier was sleeping.
Rebecca, by the way, did not catch anything, for which we thank God!
As the afternoon rolled around (which, of course, is not long after 10:30) we decided to take a family stroll. We found a path along Clear Creek which had a jumping off point in Wheat Ridge, near I-70 and Wadsworth. As we strolled back to the car, Rebecca told me this was our first day as a family since Xavier was delivered. We did not have to be anywhere like the NICU, or a picnic, or store to get supplies. We had commitments to nothing and to no one. We just spent the day together, doing nothing in particular. It was relaxing, and I did get the cable attached (and the ceiling patched!), which meant no obsessing by me so I could relax.
We finished the afternoon by getting lunch/dinner at Dickey's Barbeque. The reason for the BBQ lunch is this: when we stepped outside the house to load Xavier into the car to go for our stroll, hanging in the air like Tantalus' apple was the sweet smell of slow-smoked meat glazed with tangy sauce! I consumed several calories just breathing it in. I told Rebecca, "Change of plan. We're going to drive around the neighborhood then introduce ourselves to the neighbor cooking this." We settled for Dickey's instead. Though tasty, it was no substitute for what seeded our appetite for BBQ.
Xavier has his gastroenterologist appointment tomorrow morning. No food for him after 6:00 AM. We were told 4:00, but the ultrasound lab called and told us 6:00. We can feed him a little Pedialyte, so that should help.
I have forgotten to mention them, but Xavier has two birth marks. Dr. LeBlanc pointed them out to us the day she met Xavier. Both are on his head. One is very light and above and to the rear of his right ear.
The other is the size of a quarter on the lower portion of his occipital bone. We thought the second was a pressure mark because he spends so much time on his back. Dr. LeBlanc called it a Stork Bite because it's in a place where the stork would have lifted Xavier. When his hair thickens, no one will ever know it's there.
Great is our God Who gives us rest, and today led us along green paths beside a slow-running creek. Thank you all for your prayers.
Another Doctor
Hello and greetings to everyone.
Xavier's labs results for his blood draw on Tuesday came back. The numbers, though not alarming, are concerning enough to have Xavier examined by a gastroenterologist.
The primary indicator being followed is Xavier's direct bilirubin count, which went from 2.5 a week ago to 3.17. Though Dr. Abbey considers it a small increase, still it's an increase where the last several labs have held stead at 2.5. Also, Xavier's stool color has lightened over the last week or so, another indicator his bile producing and/or delivery system is not working properly.
We have an appointment at Children's Hospital Monday morning. We get to bring in a recent diaper, properly soiled of course, for the doctor to examine. Also, it has been recommended that a "fresh" sample should be given. Xavier is good about providing those, but for one tiny complication.
As part of the exam, Xavier will have another ultrasound of his liver. This means he needs to "fast" until after the exam, meaning he cannot eat anything after 4:00 AM Monday morning. Pray for him and for Rebecca! Xavier likes his bottles and he has no problem letting you know he wants one, or complaining about your tardiness in getting one to him. He definitely believes in the "squeaky wheel" theory. With having nothing to eat for so long, Xavier may not have the raw material to provide a "fresh" sample.
His high bilirubin count has been a chronic issue with Xavier. While in the NICU, most believed it would correct itself. It still might. However, Xavier is a fighter! He will overcome this as he has overcome all the hurdles before. Though His God he will do valiantly! The prayers on his behalf will open doors and make a way for Father's provision!
Always, we thank you for your prayers and support. It is a great honor to us that so many join together to "pray it through" for Xavier.