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 - after the very first ultrasound (before things got scary)
Over the past day I’ve been watching people post to Facebook and Twitter how hard 2011 was and how they are glad it’s over. Part of me definitely agrees with that. It was a rough year, almost from the get-go. I thought about how it contained days worse than any I could remember. Months where my heart would stop every time the phone rang.
But I cannot look back at any day and wish it away – Amy and I would go through every one of those days again because it brought us here. It brought us the happiest days we have ever had. It brought us a little boy who in spite of it all laughs easily and snuggles often.
This coming year will be sure to have challenges too – but as long as the rewards are as great as this past year, 2012 can bring it.
Ben joined us (before he passed out in true rock-star style) to celebrate New Year’s Eve last night:
Franca and Ben plan a trip to Italy
"I've been told there's champagne on new years..."
Aunt Cristina gives Ben the giggles
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
Yesterday Benjamin had his follow-up with the eye surgeon and we were not surprised by the news. The blood has finally cleared up in the right eye, but unfortunately the situation there is similar to his left eye – the retinas are folded. What does this mean? Since the retinas are still stiff and are not unfolding, Ben will have extremely impaired vision – as in almost no vision. We suspect he can see very bright lights, as he reacts sometimes to the sun and lights shined directly into his eyes, but he probably can’t see much past lights and shadows. The surgeon said there isn’t anything more that can be done at this time. But he hopes that over time (as in a year or more) his retinas will become softer and then he can attempt to re-attach them. We have another appointment in 2 months and at that point we will see where we are. We will probably also consider a second opinion to fully explore our options, but Dr Lopez is _the_ guy for this sort of thing.
The funny thing is – Amy and I left the appointment not too shaken up about it. We had already come to terms with this and expected to hear the news. We are ok with it.
You may say “With technology always changing you shouldn’t give up hope.” The thing is, we aren’t going to place our hopes in some future technology – otherwise I’d be researching longer pants for when technology can make me 6 foot tall. Ben is what Ben is – and we’re going to make the most of what that means.
It will be different – yeah. But it’s not like we have ever raised a kid before anyway. As I told a doctor today when he told us to let him know if we noticed anything unusual – “We’re first-time parents – it’s all unusual to us.”
We’ll figure it all out, and Ben is going to be great.
Also, on a related note, Amy and I recently watched a trailer for an upcoming documentary on blind teenagers that really moved us. I shared it on Facebook, but I also want to share it here.
The film seems to be a labor of love – you can find out more about it here: http://www.doyoudreamincolor.org/
We had an appointment with a gastroenterologist today to get some insight into Ben’s reflux. His pediatrician recommended a doctor who coincidentally is at CHONY, so we made a quick visit up to the NICU and got to see a few of our favorite nurses (We’ll be back on Thursday if we missed you!). We also ran into another NICU graduate, Rebecca, who looked wonderful!
Anyway, the gastroenterologist we were there to see was a bit old-school and gruff. He wasn’t surprised by the reflux and expected it to clear up around the time Ben is pulling himself up to stand (the esophagus muscles develop stronger around the same time the trunk does). He was not touchy-feely and didn’t even crack a smile during our appointment. But then towards the end he said something – “You know – that child is a miracle. When I first became a doctor, there was no way a 23-week baby would survive. But here you are holding your son. He has a hard road ahead of him, but here he is.”
I’m not sure if this was his way of putting the relatively minor issue of reflux in perspective, but it reminded us of everything it took to get here.
If you look back at these posts most of them are positive, optimistic and funny (or at least trying to be). But there were so many nights and days when we didn’t think Benjamin would make it. I mean, thinking back at the night when Carol’s water broke at 19 weeks and the doctors just gave us a 2% chance to reach viability, we really only had a miracle to hope for.
So thanks grumpy old doctor for reminding us. (For the record Amy thought he was perfectly nice).
I had found this abstract of a medical publication when we were doing general research on micropreemies early on. Most of these types of things are really dry and scientific, and by just reading the title “Why do we help a micropreemie to live?” I was sure it was going to be unsettling. To my amazement, it was incredibly moving. I tried looking for it while writing the “Choices” post, to show a doctor’s point of view, but wasn’t able to find it. When I stumbled upon it again tonight I thought I would share.
Helping a “micropreemie” to live by aggressive interventions may sometimes seem unnatural. However, utilitarian assessment of benefits derived from lifesaving efforts for a micropreemie is considered inappropriate. The goal in treating premature infants has advanced from fetal salvage to achieving “intact survival”, which represents a new therapeutic target. In this way, the record for lifesaving in extremely low-birthweight infants is continually being broken. Why do we help a micropreemie to live? Moral and ethical emotions are the underlying reasons for the aggressive care devoted to premature infants, including micropreemies. Such human feelings might even be considered the purpose of life. Human emotion is the impetus for aggressive efforts to improve the survival prospects of premature infants. The beautiful and delicate nature of a newborn is compelling. The high-order emotion of empathy for another’s misfortune is also important. Most human emotions are related to an awareness of death, and micropreemies are near death. In Oriental thought, a human being is a growing product of nature. Forces of nature and changes in a living being follow nature’s rules. First and foremost, an individual life is part of the long chain of existence beginning before the self and continuing beyond it. An immature human being, even a newborn, is simultaneously a complete entity and part of nature’s long chain of being, which has a wholeness of its own that affirms a micropreemie’s right to life. A fetus is a member of human society in the sense that there is an overall reverence for life as a quality that lives on. CONCLUSION: The limit that bioethics must not exceed is the sanctity of life. We believe that the birth of a micropreemie is an important and serious event. We profoundly wish that a micropreemie might live and thrive, because we on earth must live with the continual presence and imminence of death.
-Takahashi S, Endo A, Minato M., Department of Pediatrics, Nihon University, Nerima Hikarigaoka Hospital, Tokyo, Japan.
I found myself reading a blog from a mother of twin preemies, a boy and a girl, almost two. The daughter who was ventilator bound, very suddenly passed last month. It is heartbreakingly sad to read her story, but I was so amazed by the strength of the mom.
The reason I bring her up is that there was something she included in her last post that has really stuck with me:
There’s a man who does the Ironman triathlon out in Hawaii every year with his disabled son in tow. A son who he pulls swimming, biking and of course running. Their name is “Team Hoyt” if you’d like to look them up. Year after year I’ve watched him and heard his story. The questions were always the same. “Wouldn’t it be easier to do this enormous physical task without pulling your son?”His answer was always the same. “I couldn’t do this without my son”.