Awareness

As many of you know, and some of you don’t, the reason that Joe and I had to find the wonderful Carol to be a gestational surrogate for us is because at the age of 27 I was diagnosed with colorectal cancer. Before they radiated the heck out of me (and determined that putting shields in to lift my ovaries wouldn’t work), I went through a whirlwind egg-retrieval and embryo-making.

I am outrageously lucky and blessed that my treatments worked and today I am very healthy, give or take the missing section of my insides which makes eating french fries a rare luxury. In 2010 I celebrated being 5 years cancer-free by learning how to run (run being very broadly interpreted) and completing my first 4 mile race- the Get Your Rear in Gear run/walk. Last year’s run was put on hold for The Semicolons (get it?) due to the arrival of Mr. Ben, but this year we picked up our running shoes again.



~The 2010 team

This year’s Semicolon’s were quite distinguished. Due to Joe’s t-shirt design skills, we won “Most Creative Team”, and our very own Bill came in 5th overall, which gave him time to run home and freshen up while the rest of us straggled behind (though Cristina came in a respectable 21st for Women). My time was 54min, due mainly to my technique of only running during downhill grades. I didn’t really keep up with my training, and downhill running is way more fun. Even Ben participated, waking the 4 miles in style (his stroller) with his Grandma.

Team Semicolons during the 2012 race
~This year’s “most creative” team

I have to thank everyone who put up with my incessant begging on Facebook, and extra thanks to those who donated, and extra-extra thanks to those brave folks who met us at Prospect Park insanely early on a Sunday morning to support colon cancer awareness and early detection, and of course those that showed up a little later to cheer us at the finish line. To get on my soapbox for a moment, if you have a family history of colorectal cancer, OR are over 50, please get a colonoscopy and catch anything potentially cancerous before it turns into cancer. Trust me. Chemo, radiation and surgery are way less fun than the brief discomfort of a colonoscopy. Colon cancer is the number 2 most fatal cancer, but it is also one of the easiest to detect. And it is not, much to my surprise, an old man’s disease.

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A full weekend!

We have had a fun weekend with Benjamin getting to see lots of family. First Carol and family visited and her kids got to meet Ben for the first time. It was really nice to have everyone together. We played some games and ate some NYC pizza and Benjamin had some stories read to him and showed off all his new tricks.

And the next day we celebrated Amy’s brother Kevin’s birthday. Ben’s Gram got him some Giants gear and since the Steelers are out Ben thought it was ok to root for the Giants with his uncle and the rest of Amy’s family. Turns out he’s a good luck charm and the Giants won.

All this visiting does a number on Benjamin though – it really screws up his eating for some reason. The smallest change in schedule and level of stuff going on throws him for a loop and then the next few days he makes it so hard to feed him. Hopefully this will get better but right now it is super frustrating.

PPROM memories

One year ago this week began a seriously scary time. It was then that Carol’s water broke – PPROM – at 19 weeks. I don’t know how much you know about PPROM – but it happening at 19 weeks is bad – like almost no hope bad – like assuming that infection or bleeding will end the pregnancy within hours bad.

We talk a lot about Benjamin’s prematurity and the challenges involved but that month before he was born changed everything. PPROM (Preterm Premature Rupture of Membranes) is scary. But if you read the support sites or the facebook groups for the women going through this – you will be amazed by the hope they share and the strength they give each other. Carol had that hope and that strength times ten and she never gave up on our baby. No one would have ever blamed her if she did. I think part of each of us imagined we were just prolonging the heartache – the odds were so slim.

Carol (for those of you joining us mid-story) was our gestational surrogate – she carried our embryo (later fetus, later Benjamin). To a lot of people the idea of a surrogate is strange. Some imagine it is some sort of business relationship or a situation we would later hide from our child and pretend never happened. But let me tell you this – I cannot imagine another person, who we only knew for a few months, who would have done everything she did for our son. When we started, Carol might have been our surrogate, but by the time we got through it all, Carol was family. And Carol’s family was family. She was amazing throughout the hospital stays, the never-ending bedrest, the time away from her husband and children and doing everything she could to last one more day to let Benjamin cook.

The month between the PPROM and when Benjamin was born was rough. I don’t think any of us slept much, we were scared of the phone ringing, Amy and I didn’t know what to do with ourselves. But every time the doctors did another ultrasound (which was pretty much constantly) they seemed surprised Carol kept going. And go she did – just over the border of viability. 23 weeks, 3 days.

So, though we have said it many many times- Thank you Carol, thank you Carol’s family, thank you Carol’s friends and everyone who supported her and us and Benjamin.

And if you have stumbled upon Benjamin’s blog because you or someone you love are dealing with PPROM – please stay hopeful. While Amy and I would never have gotten to be parents without doctors and science – they only get you so far. That last stretch was all faith.

Carol and Amy

Carol and Amy - after the very first ultrasound (before things got scary)

A Benjamin Story – on Risk! (the podcast)

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

Happy 8 Months!

We have several milestones to celebrate:
Benjamin is 8 months old
Benjamin turned 4 months adjusted
Benjamin has been home from the hospital for one month

Ben sits on the chair with Woods the Bear

8 Months Old with Woods

We had a great visit from Carol and Conrad on their way abroad to visit one of their other surrogate families. It was great for them to be able to see Benjamin at home and not in the hospital, and to come full circle in our journey.

While they were here Benjamin took them on a tour of downtown Manhattan. We all went across the Brooklyn Bridge- surprisingly a first time for all of us (though Joe once walked half-way). There’s some construction going on, so the Brooklyn side is a little claustrophobic, but it was a fun way to get into Manhattan without driving, especially now that we’re nervous to take Ben on the germ filled subway. We visited Joe in his office, his coworkers got to meet Benjamin, and we saw the WTC memorial from Joe’s bird’s eye view. Now Carol and Conrad are lounging on a beautiful beach, and we’re incredibly jealous!

Benjamin has been sleeping in his own crib in his own room for a whole week. He’s been doing great- sleeping through the night, with several long naps during the day. Crazy kid. His eating is all over the place, but at least he likes to sleep. He’s also so self-sufficient that it’s funny. In his swing, or during tummy time, or even when he wakes up, he can sit there and babble and eat his hands and keep himself amused. He’s been verbalizing and cooing a lot, and the patterns sound like talking, which is really cute.

Here are some pictures from the past week and a half. Enjoy!

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Grow Ben Grow

Benjamin is now 2 lbs 10 oz and had a very good weekend. Carol came to visit with Ruth, Karen and Kristin and everyone was so happy to see how “big” he has gotten. Carol even got to hear his cry and he opened his eyes for her too. And with this trip up our chest freezer is officially full to the brim with milk! But no worries, we now have a second chest freezer for Carol to fill. Ben better start eating more soon! It’s a bit crazy, but our dining room now looks like an ice cream shop. So grateful that Carol keeps pumping for him – he is doing really great on milk.

What has happened so far…

Jan 10 2011: Carol (our surrogate)’s water broke – PPROM at 19 weeks 3 days and is admitted into the hospital. Baby has a strong heartbeat but no amniotic fluid. The doctors give us a 1% chance of survival. They observe her and ultimately send her home. If she can make it to 23 weeks, the baby has a 20% chance.

Feb 6:  Carol went to the hospital Wed night with bleeding and then contractions (22w 5d). Amy and I went out there Thurs until today. The contractions are under control but the bleeding comes back at night when the baby gets active. We’re now at 23.2 and hoping he stays in as long as possible (she will be in the hospital until delivery now). Baby has strong heartbeat and is doing well – but still little to no fluid.

Feb 7: Our son, Benjamin Charles, was born today – 17 weeks early – and is critical but stable. He’s just 1 lbs 12 oz but one heck of a fighter.

Feb 10: A bit of a rough day for Benjamin but he is holding in there. It is so nerve-wracking watching the nurses and doctors constantly adjusting things to compensate for his prematurity. They keep reminding us he is not out of the woods by a long shot. But watching him wiggle and stretch you can see the will to live is strong.

Feb 11: Rough going here- Benjamin needed a transfusion last night to bring his blood count up. Also his kidneys had stopped working yesterday – bad news. They gave him meds and finally today after a day and a half he wet his diaper again. Even the dr cheered. His lungs and blood pressure are still troublesome, but we have hope. I donated blood today special for him for when he needs more. Grateful for another day.

Feb 12: A better day so far for Benjamin. His kidneys are still not 100% but a big improvement from earlier yesterday. Lung x-rays show some improvement and his numbers look good – oxygen is down to under 40%. Though things can change at any moment, we are going to enjoy this one. He is also getting grandparent visitors today! (Janice, Charlie, and Edie)

Feb 13: Benjamin had another good day. *knocks wood*. He needed another transfusion yesterday but that is expected with all the blood they take for tests. Kidney function is improving and even lung x-rays are better. Amy and I continue to be grateful for each day, the extreme kindness of friends and the generosity of strangers

Feb 14: Benjamin was moved to a new ventilator today, and he’s going to be started back on milk. He gave me a few scares with his breathing before the ventilator was set, but he’s doing well now. He had a brain sonogram this morning and it looks good. He’s still losing fluid weight, but hopefully the milk and lipids will start fattening him up soon. Happy first week Benjamin!

Feb 16: Ben had a good day yesterday and a good night last night. They removed him from his main line and he’ll get a picc line today. He’s getting fewer labs done and he’s doing well on his new ventilator. Thank you all so much for your love and thoughts. They also took him off of dopamine and are upping his milk feedings. Go Benjamin Go!

Feb 17: Today (for now) Benjamin is off all his medications. He is getting TPN and milk for nutrition, but right now all his systems are doing what they should. With his fancy new picc line he can lay on his belly, which puts less pressure on his organs and helps open his lungs

Feb 18: So we had our “state of the baby” with Benjamin’s medical entourage: Everyone is pleased with his progress so far. The goal for now is to gain weight and not get an infection. He is gaining a little already but is not back to birth weight yet. He will probably need surgery to close a PDA (an opening between the pulmonary artery and the aorta that normally closes on term babies) but they are going to wait for now.

Feb 24: Benjamin has been having some liver issues, but they should clear up when his milk intake increases (he’s up to 4ml, 8 times a day). His blood gas levels have been off today too but they have been trying to tweak things to make them better. Overall though he is doing pretty well and is almost back to birth weight.

Feb 25: Benjamin’s 18th day was mostly uneventful, which is the way I like ’em. He got a blood transfusion and was put on a medicine to help with his liver function. He’s gaining weight and is nearly at his 1lb 12oz birthweight. Today is 26 weeks gestation. There are still 14 weeks until he would be officially ready to be born.

Feb 28: Benjamin had a banner day today. Gained 10grams, got rid of that pesky ventilator leak and was pretty mellow all day. Also, moving to NY is looking imminent! More details by Wednesday. The people in Lancaster have been amazing, but there’s no place like home.