I kept it a little quiet, but recently I took a nine-week storytelling class with Kevin Allison (from The State) through Story Studio. I had always loved to write and the recent growth of true-life storytelling events, podcasts and groups (such as The Moth and Risk!) really got me interested in the differences of storytelling orally without notes versus storytelling through writing.
I really enjoyed the class and workshopped a lot of stories ranging from silly to moving. It was part creative, part therapy – and I got a lot out of it from a story crafting aspect and from a public speaking aspect.
Kevin, the instructor, is also host of the Risk! podcast. The podcast’s theme is people telling stories they normally wouldn’t share. When he mentioned he wanted to record one of my stories for his show I knew which one he meant. It was a story that includes a really scary day with Benjamin that, before the class, we had only shared with one other person because it had shaken us up so much.
But do you know what? Telling the story helped me come to see what it meant in my journey to become a father so I agreed to put it out there into the universe. And today it was posted (on Risk! – New at This and iTunes). The story is called “Radio Story: For Benjamin by Joe .”
I do want to warn you, the podcast in general tends to be explicit and not safe for work or small children – but my story is mostly clean (minus two dirty words). You can skip straight to my story (I close out the show) at 55:00.
Listen the show (titled “New at This”) at the Risk website: Risk! – New at This or download it (free) from iTunes
Benjamin went down to the operating room yesterday, hopefully for the last time, to repair his inguinal hernia. I am beginning to think that surgeons have no imagination, because every time we speak to them after an operation they always say “It was worse/bigger/more complicated than we thought” This again was the case as they had to fix both sides and of course it was all bigger than they thought. That said, they were able to fix everything and patch him up.
Because it was an involved operation, they ended up giving him general anesthesia and putting him back on the ventilator for the surgery. By a few hours after returning to his pod (a different pod than the other day – they moved us again) he was awake, extubated, and breathing on his own. He has a couple of small incisions but hopefully not much worse for wear.
He was not happy though – he was grumpy he hadn’t eaten and was obviously in some pain. Nothing a little baby-morphine(tm) didn’t fix. Today he is back on full feeds and on the mend.
Now the only thing standing between him and h-o-m-e is finishing his anti-fungals, passing his car seat test, and avoiding infections.
Also – our little monster is now 9 pounds and 13 ounces and 20 inches long. At this rate he will be 300 pounds by Christmas.
Benjamin had a good weekend. Carol and Conrad came to visit and see his new digs and get some good i-talian food. Both missions were accomplished, and we were so glad to have them here.
Mr. Benjamin seems back to his old, squirmy self. He kicked and wiggled and looked around all weekend, pausing only to dislodge his ventilator tube this morning. He’s going to be on his antifungal medicine for 6 weeks to make sure that the infection is totally gone, but other than that, all clinical signs of infection seem to have gone away.
All this, just in time of course, for his surgery. Benjamin’s PDA ligation is scheduled for tomorrow morning- he’s 3rd on the list. Though we know that he needs the ligation, and that it will help him in many ways- it will increase blood flow to his organs, make his heart work a little less, and help his lungs develop; we also know that he doesn’t like change. The doctors said it will be a rough 24-48 hours after the surgery as his body adjusts to the different circulation path and to expect low blood pressure, high vent settings and kidney issues at first.We’re nervous that the next week will be a tough one, but we’re also hopeful that it will help him more than a short-term setback.
And for your viewing pleasure, some cuteness:
Holding mama's finger
trying to find his thumb
Wish us luck tomorrow and for a quick recovery for our little guy!
Ok- I get it now. Why they say it’s like a roller coaster – because when the downs come, they come fast.
When we last wrote, Benjamin was acting a little off (sleepy and less responsive) and they had found a fungal infection and started treating it. Also his blood pressure started dropping again so they needed to restart the dopamine. By the next day they started giving him a slew of antibiotics and a stronger anti-fungal medicine. They also ran a bunch of tests because his blood count had been low and his platelets had been low. They also redid a head ultrasound and found a grade 1 bleed in his brain. It is pretty mild and if it doesn’t grow it should not cause any problems, but it is pretty scary for us. They are going to check him out again in a month to see if it has changed.
By last night they had his blood pressure under control but his ventilator needs increased a lot. For a while they had him up to 100 breaths per minute (a few days ago we were bragging that they had him down to 18). Luckily he seemed to respond to that and they brought him down to 40 – pretty much where he started from when he got to NY.
The doctors seem to have everything under control, but it’s really scary for us. Hopefully everything was inter-related and he will bounce back quickly and will be better when the infection is kicked.
Like they say – the only way out is through… keep our little guy in your thoughts.
Benjamin made some progress today. They took him off of epinephrine and weaned him more off the dopamine. Best of all they took the arterial line out of his head so he looks a bit less scary. Benjamin’s blood pressure was pretty stable all day but he spent the day giving me grey hairs by dropping his heart rate. (though that’s a common thing for preemies). No progress on the ventilator but we’ll take what we can get.
Grandma Edie, grandpa Jay and aunt Roseann visited today too. Benjamin wiggled hello.
Benjamin had another quiet day today. They lowered his vent settings and upped his calories a bit. He is up to 2 lbs 1 oz. He was a lucky boy and had so many visitors yesterday. Amy and I also had a great time seeing friends.
I’ve told Benjamin all about NYC and he’s most excited about getting a Gray’s Papaya hotdog. I don’t have the heart to tell him that he’ll need to stick to milk for now.
nom nom pacifier