when I started this blog five years ago, I was a pet sitter and the name animal-crackers made sense. now I'm a stay-at-home-dad and freelance writer, but rather than confuse everyone by getting a different blog, it's just easier to keep posting things here.
Friday, September 30, 2005
He still has a long way to go -- two and a half months, give or take a couple of weeks. And he's still 4 pounds 11 ounces less than what Josh weighed when he was born.
Now we're actually thinking about what it'll be like to have him home. We're converting the office into a bedroom; tearing up the ugly shag carpet and polishing the green tile beneath. We'll paint the soothing lavender-blue walls a more neutral beige, to better complement the green tile.
We're not sure whether it's better to move Josh or Dylan into the office. It faces the front, which is louder and better suited for Josh. However, Josh will have a difficult enough time adjusting to Dylan. We don't need to make him feel like he's been kicked out of his room.
Thursday, September 29, 2005
"Oh fuck. Oh fuck. Fucking Jesus."
He couldn't see either of us snickering and we didn't say anything to him. So he just stopped.
Um, sorry for grossing anyone out with my last entry. The doctor is 90 percent sure it's eczema, which is just bad skin caused by stress.
Hard to believe, I know.
Today, Dylan weighed 2 pounds 9 ounces, which is where he's been three of the last five days. The other two days he weighed 2 pounds 10 ounces.
Also today, he is 30 weeks gestation. Only 10 more weeks and he's done baking.
Oh and one more piece of news. Tom Delay was indicted. By our district attorney! Whoo hoo!
Wednesday, September 28, 2005
My skank, my shame
It's entirely my own fault. I failed to follow up on a partially treated rash that had developed on my back. And when all hell busted loose five weeks ago, I gave it no thought at all.
Now I am paying the price. Because it might be fungal, the doctor is worried (rightfully so) that I might infect Dylan.
In other news, Dylan is 2 pounds 10 ounces again. He was on Monday, but dipped an ounce yesterday. Also, he has spent considerable time with the ventilator oxygen level turned to 21 percent -- the concentration we breathe everyday. He's not ready to go it alone, but his lungs are indeed improving.
Tuesday, September 27, 2005
Andrea held Dylan
From what I heard, at least. I wasn't there. Instead, I was home waiting for Josh to wake up from a four-hour nap.
That's one of the more frustrating aspects of Dylan being in the hospital. Since Josh is too young to enter the NICU, Andrea and I go separately. We could get a babysitter, but that requires coordination. And if you haven't heard, we have no coordination.
Maybe I'll get to hold him tomorrow.
Monday, September 26, 2005
It's 107 degrees
Saturday, September 24, 2005
Our freezer is packed with dozens of little bottles of milk. If we can't unload more of it soon, we might have no where to put the ice cream and knishes.
This is where they went.
Here is a picture of Lynn overlooking Neuschwanstein, the New Swan Castle.
And here's Tim in a town called Garmisch.
Tim hopes to retire from the military soon and start a second career -- maybe in photography. What do you think of these landscapes?
Thursday, September 22, 2005
Gas Truck Song (or An Apology to David Byrne)
His favorite was Kermit the Frog's "Rainbow Connection".
Then something happened several months ago. We started telling him bedtime stories and he no longer liked listening to the not-so-golden oldie. We'd sing some in the car -- "John Jacob Jingleheimer", "Grand Old Duke of York", etc. But not that often.
One of the problems is my car sucks. Cartime is the best time to sing. But my stereo barely works. So when Andree when into the hospital a little over a month ago, I started driving her car. I dug out some of my old CDs and away we went.
The first CD I grabbed -- Talking Heads' Sand in the Vaseline. The first song, "Life During Wartime."
"I don't like that song," Josh yelled from the booster seat behind me.
It's a good song. We'll just listen to it for a couple of minutes. I'll turn it down low. None of my pleas worked. He hated the song. Then I remembered he had his Matchbox garbage truck in his hands.
"But Josh, this is the Garbage Truck Song."
"The Garbage Truck Song?"
Yes, the Garbage Truck Song. We listened to it, and when it was finished Josh yelled "I want the Garbage Truck Song! I want it loud!"
We listened to it a few more times to and from the hospital and daycare. Of course, I wanted to listen to the whole CD. I tried the second song "Girlfriend is Better".
"I want the Garbage Truck Song! The Garbage Truck Song!"
"But this is the Gas Truck Song," I tried. It worked once.
"The Gas Truck Song?"
Now the whole CD has been renamed. The Tow Truck Song. The Ice Cream Truck Song. The Flower Delivery Truck Song. I can't keep them all straight, and he calls me on it when I get them confused.
That's all he wants to hear now. Talking Heads.
Then tonight, while I was getting him in bed, he started singing:
"Down, down in the basement, we hear the sound of machines."
For those who don't know, that's the second verse of the Gas Truck Song.
The nurse weighed him last night and said it hadn't changed from two days ago -- 1,090 grams.
Now on Tuesday that converted to 2 pounds 7 ounces. Last night the computer said it was 2 pounds 6 ounces.
Wednesday, September 21, 2005
Austin is quite a drive from the beach, but meteorologists say we could get 70 mph winds this far inland. So everyone in town is freakin out.
Andree and I weathered two hurricanes in 1996 -- Bertha and Fran. We lived in New Bern, NC, about a 40 minute drive from the beach. The apartment house where I lived was 50 yards from the Trent River.
When the storms hit land, Bertha had winds of 105 mph; Fran, 115 mph. By the time they reached us, their winds were about 75 mph.
I kind of wish I had some exciting story of survival to tell. But really, they were no big deal. The river rose about 12 feet, but our house was perched 15 feet above normal high tide.
I'm not worried about Andree and Josh. I do worry a little about Dylan. The hospital has generators. But so did the hospitals in New Orleans. How long with the generators last?
In the meantime, guess I'll be running to Sam's Club tomorrow morning. I hope membership still has its privileges.
Tuesday, September 20, 2005
So if I were on the same diet plan, I'd weigh 282 pounds now. Yikes.
Monday, September 19, 2005
The Big Le Joshski
"The seven pin?"
"Yes, it's red."
Sure enough, only nine pins were in the little plastic carrying case. The seven pin was gone.
"Josh, do you know where the seven pin is?"
"Yes," he declared. He went into his bedroom, opened the closet, pulled out the bottom of four drawers where his toys are kept, reached in and grabbed the missing pin. It was indeed red.
He bowled 10 frames and scored 80 points.
Sunday, September 18, 2005
Thursday was the worst of it. As mentioned previously, the doctors removed Dylan's breathing tube and replaced it with a nasal plug.
Soon after I arrived Dylan stopped breathing. It's apnea, something most people do in their sleep. Only our brains are wired to start breathing again. Dylan's is not.
The nurse rubbed his back, and he started breathing. Less than a minute later, his breathing stopped again and his blood-oxygen levels started dropping.
She rubbed his back more vigorously. He took a few more breaths. By now his whole body was turning purple. The nurse told someone to get Dr. Cho, who's at the other end of the ward.
Despite the nurse's rubbing, Dylan had stopped breathing all together. Dr. Cho arrived and busted out a hand-pump air mask -- the kind EMTs use on TV.
For the next five or 10 minutes the only thing keeping Dylan alive is the hand-pump. His heart rate was all over the place and his blood-oxygen was in the toilet.
"Are you sure you want to watch this?" Dr. Cho finally asked.
"You can wait in the lobby," he suggested.
"Is he going to be okay?"
"He'll be okay. I'll have someone come get you in a few minutes."
After more than 20 minutes the nurse came out. They had replaced Dylan's nasal plug with nasal prongs. I had wanted to take a picture and figured this was the best opportunity.
Still, Dylan wasn't stable. His lungs were exhausted and not working. After another 10 minutes of adjusting the ventilating machine, he's set.
And I was out of there. That was enough for me.
That evening during dinner, someone threw a temper tantrum and a hamburger. Unbelievable.
He won't be returning. We have neither the time nor the energy.
Thursday, September 15, 2005
Wednesday, September 14, 2005
Yesterday, I took Andree's mom to see Dylan in the morning and Andree's step-dad in the afternoon. While I was with the mom-in-law, Dyl was squirming and acting downright irritable.
"He's got a little something in his diaper," I told the nurse.
"So change it," she said.
"Um, no thank you."
"You're a stay-at-home dad, right?" she asked. "Grab a diaper."
So I got to change my first Dyl-diaper. Very full for such a little butt.
Tuesday, September 13, 2005
That means no surgery tomorrow. He'll start nursing again and in a couple of weeks should be off the IVs. Yay!
Monday, September 12, 2005
We just got off the phone with Dr. Cho and Dylan will undergo surgery Wednesday. Dyes were flushed up and down his digestive tract. And they both stopped at the same area -- where the small and large intestines meet.
So on Wednesday, a surgeon will take a look inside to find what's wrong, why the roadblock. The surgery itself sucks. But not knowing for sure what the problem might be sucks more.
Dr. Cho threw out the possibility that Dylan may have to have the lower end of his small intestine connected to a tube that would exit the body through an incision and into a bag. Later when he's old enough, the intestines would be re-attached.
Maybe we'll get to keep the shit-bag as a souvenir.
The surgery will set back Dylan's recovery. But it's necessary. It's just a matter of timing -- balancing his prematurity with the urgency of his condition.
Happy birthday, Dyl.
Sunday, September 11, 2005
Today Dr. Rivera switched Dylan to a ventilator. He still has the tube down his throat, but the other end attaches to a smaller, more portable device.
If Dylan tolerates the ventilator, tomorrow they will move him downstairs for a three-dimensional MRI of his stomach. If he doesn't tolerate it, then the doctors will have to think of another way to get him down there.
The reason is they still don't know what's going on with his digestion. Worst case: A portion of his bowels may have twisted, lost blood and died, leaving a lump of necrotic tissue in his belly. This is probably unlikely, since he's not stressed.
He could have a deformed intestine or an inflammation. And inflammation can be treated pharmaceutically. A deformity can't.
Whether Dylan makes it to the MRI room tomorrow or not, Dr. Rivera cautioned that he probably will grow tired of the ventilator and need to be switched back to the oscillator.
But for now, no shaking baby.
Fire Boat Song
Hmm hmmm hmmm,
It's kinda like a fire truck,
Dee doo doo dee,
It goes on the lake.
Saturday, September 10, 2005
Also, Andree's stepdad kicks butt in the kitchen and used to have a master plumber license. We're often hungry and our plumbing stinks, so that should work out quite nicely.
Dylan maintains his holding pattern. More mucus flushed from his intestines. Maybe he won't need surgery after all. Who knows. We haven't talked to a doctor since Thursday morning. Of course, no news is good news.
We also have heard nothing about the planned spinal tap. I'm sure a doctor would have called us if one was performed and none of the nurses know anything about it. So maybe someone decided it was better to wait. Again, who knows.
Friday, September 09, 2005
Gas and tap
Normally that's not a big deal in this family. But by having a movement Dylan has taken the first step toward feeding. That's important because the IVs put stress on his liver and lungs.
Of course, it doesn't come without bad news. The doctors fed him a dye and X-rayed his belly every hour yesterday to watch how well it flows through his system. It took a long time getting from the stomach into the intestine.
No one knows for sure what is causing the bottleneck. It could be a build-up of meconium or mucus. It could be an inflammation. Or it could be a congenital defect. If it's the a defect, then Dylan will need surgery.
And they can't perform surgery for another week because of his size. So that's another week on the IVs and more stress on his liver and lungs.
Also, we still don't know what's going on in his head. The infection is gone and his blood is clotting a little better. However, since the blood leaked into his brain, it's not unreasonable to believe bacteria did also.
And the fluid from the brain mixes with Dylan's spinal fluid. That means he needs a spinal tap to look for the bacteria.
Dylan looked better last night and the respiratory tech said his blood-oxygen levels were "impressive." So all is well today.
Wednesday, September 07, 2005
Dr. Rivera, the grand pooh-bah of NICU, was at Dylan's pod when we arrived. He and the respiratory guy were suctioning fluid from Dylan's lungs, where the bacteria in the blood had set up a new base camp. Yay.
When we came back later, the nurse had completed a second suppository and removed a butt-plug of meconium. But still no real movement.
Tomorrow, he gets another ultrasound on his head.
So yes, he's still sick. Yes, the doctors suspect blood continues to seep slowly into his brain. And no, his intestines still don't work. A trifecta of misery. A hat trick.
On the bright side, the nurse removed a godawful-fugly cover from Dylan's camper. A charity makes covers and donates them to the NICU to dampen the bright lights and loud noises. Dylan's bubble-cozy was a camouflage-esque, mottled green with deer heads. Their antlers intertwined in a grotesque display of fug.
It was replaced by what appears to be a Caribbean and/or Mexican circus of brightly colored animals and shapes. Much better.
The support group was almost laughable. There were six of us -- including the two people from the hospital. Andree and I met a very nice couple who's twins were born eight weeks early. They were the couple's first children, the culmination of eight years of effort and in vitro fertilization.
They were supposed to be the success story of how bad things can be and still have a happy ending. Then we told them the story of our three boys.
They seemed a little uncomfortable by the time we were done.
One of the lessons we learned from Jack was that grief cannot be measured. There does not exist a Federal Bureau of Grief Comparison. Judging another's loss against ours is impossible.
Mr. and Mrs. Twins were a nice couple. But this support group experience offered us nothing except free pizza and Coke.
Tuesday, September 06, 2005
Better days than this
Dylan is fine. He has an infection. A common skin bacteria worked its way into an IV. That is most likely the cause of his low platelets, which may be why the tiny injury in his brain isn't clotting properly. Or it might not. Who knows. But he's on antibiotics.
Today while I was visiting the hospital with my mom, an alarm sounded. Three nurses were taking a sterile blood sample from Dylan when it happened and for a moment I thought it was because of him. No. It's the Labor and Delivery emergency broadcasting network -- meaning another NICU baby was on the way.
The three nurses dropped what they were doing and sprinted out the door only to return a few minutes later. False alarm. Luckily, they had just finished taking the sample and didn't need to repeat the process.
The entire visit with my mom was exhausting. It seemed the whole time we were there Dylan was poked and prodded. His blood-oxygen levels dropped and he looked very uncomfortable.
Andrea and I returned later after her post-surgical check-up with the OB. She passed the exam. Dylan was doing better this evening. His ventilator was turned down but his oxygen remained high.
Andree posted some pictures of him here.
Monday, September 05, 2005
More good, more bad
They weighed Dylan today -- the first time since he was delivered. He weighed 2 pounds, 3 ounces more than he did 14 days ago. His blood chemistry -- oxygen, carbon dioxide, sodium, etc. -- look relatively good after two weeks of bouncing around.
Another ultrasound on his head this morning showed continued traces of blood in his brain. It's in the same place it was a few days ago -- the ventricles. The doctor isn't worried that it will cause damage. The real problem is what is causing the bleeding. It's not supposed to happen after he's three days old.
Dylan came up negative for hemophilia -- so no royal blood lines here.
Combined with the utter lack of movement in his intestines, the doctors believe he might have a wound in his belly that's consuming the platelets needed to stop the bleeding in the brain.
Or, given that bacteria was found in an IV, it's possible he has an infection that's destroying the platelets. He's been pumped full of antibiotics and should be able to fend off any bacteria.
Bottom line, the doctors are baffled. He looks relatively healthy for his prematurity. Except for being born 3½ months early, he has suffered no trauma.
"It's upsetting," said the doctor who designed and is in charge of the NICU.
Oh great. If that's what the grand pooh-bah is saying, what must the other doctors think?
But like AndreeB says, "Nothing means nothing until it means something."
Hurray, Dylan is officially 14 days old!
Saturday, September 03, 2005
Back to work
I did accidentally meet one of the clients today. This happens rarely, and isn't suppose to happen at all. I pulled into the driveway and saw nothing unusual. When I walked, in the TV in the family room at the back of the house was on. A little odd.
Then I walked into the kitchen and sure enough, there was KC getting things ready to leave. I scared the piss out of her.
Turns out, I hadn't checked this new paperwork that's now included in the files. If I had, I would have seen I was about five hours early. KC was very nice about the whole thing, and asked "Are you the one that just had the baby?"
Because of my sits yesterday and today, we didn't get to see Dylan until late. Friday night he was agitated when we arrived and grew increasingly pissed the more we talked to him. The nurse had to crank up the oxygen to 55 percent from 40 percent. (We breathe 21 percent.)
Tonight, he was much, much better. His oxygen was 32 percent. The nurse had pulled down the unit's lid and set the thermostat at 36.8 degrees Celsius. His body temp was 36.4 degrees. (You'll have to do the conversions yourself.)
Bad news -- bacteria was detected in one of Dylan's IVs. He is showing no signs of illness, so it's most likely that the bacteria came from the tube itself and not his blood. However, they removed the IV and now have to prick his heel every two hours to check his blood gases. Poor baby.
Also, there's no progress on his intestines. The doctors had hoped they would detect gas in them by now, which would signal it's OK to give him some breast milk. But he has no gas. Who's baby is this?
Dylan was given a teeny bit of milk the other day, but it's still sitting in his stomach. Like the bacteria, it likely means nothing serious. His innards probably just need to develop.
Friday, September 02, 2005
Thursday, September 01, 2005
More of the same
Then while Josh was in school, my mother (who is in town for a couple of weeks) and I went to see him again. He was sound asleep.
Today he gets his first sips of milk through a feeding tube. It's barely half a drop every three hours -- to test drive the intestines and such.
Andree, as you may already know from her blog, is starting to feel better. Still sleeping 14 hours a day, but she did that before Dylan.
Funny story about Josh. Last night he was playing with his grandma and hurt her as 3-year-olds are apt to do when they play. It was an accident, but still he did a couple of minutes in time out. Then I told him to tell his grandma he was sorry.
I watched from the kitchen as he told his grandma "I'm sorry." Then (my mom told me later) Josh watched me turn away. And when I wasn't looking, Josh turned to his grandma and stuck his tongue out at her.
She laughed so hard she nearly fell of the couch.