Here's a picture from Milo's birthday party (also showing the amazing cake that Laurie made) and a great one from his one-year photoshoot.
Tuesday, August 13, 2013
Happy (belated) birthday, Milo!
This post comes a little late, but we very happily celebrated Milo's first birthday a little over a month ago. It is so hard to believe that we really went through all the craziness that we experienced last year when we look at his adorable little face. He's really just a perfectly happy, healthy little kid. He's recently started walking and continues to meet every developmental milestone. You'd never know how close we came to losing him.
Here's a picture from Milo's birthday party (also showing the amazing cake that Laurie made) and a great one from his one-year photoshoot.
Here's a picture from Milo's birthday party (also showing the amazing cake that Laurie made) and a great one from his one-year photoshoot.
Saturday, March 2, 2013
Happy birthday, Thomas
A year ago today, we had just learned that our "baby A" was already on his way to being born, far too soon at only 18 weeks. We were told that our "baby B" had almost no chance of survival, and had to push our doctor to try a Delayed Interval Delivery. Almost exactly 1 year ago as I type this (around noon), Thomas was born far too soon and we were left desperately hoping that his twin brother Milo would beat the nearly insurmountable odds stacked against him.
It's very hard to look back and wonder about what could have been with Thomas. Had we gotten the cerclage placed just a little earlier, maybe both of our boys would have made it. Maybe if our original doctors had been more proactive, we'd have had that chance. At the same time, we know what a gift Thomas gave us, gave his brother. By hanging in there as long as he did, Thomas gave our doctors a chance to do a very controlled Delayed Interval Delivery in optimal circumstances, which ultimately gave Milo the best chance possible. Still, today we are missing Thomas very much.
But a year ago today, we also decided to take charge of Laurie's pregnancy and stop just listening to our doctors without questioning. We didn't accept what was offered to us without a challenge--we learned enough to know what to ask about and demanded the type of care we thought made the most sense. And we shared in hopes that others would learn from our experiences. We've already been in touch with a few people through this blog who did just that, and we're proud that Thomas' legacy lives on through their survivors.
130 days after we lost Thomas, Milo finally joined us, our miracle baby. His brothers were surely watching out for him from above and keeping him safe during the many months that Laurie spent on bed rest.
It's very hard to look back and wonder about what could have been with Thomas. Had we gotten the cerclage placed just a little earlier, maybe both of our boys would have made it. Maybe if our original doctors had been more proactive, we'd have had that chance. At the same time, we know what a gift Thomas gave us, gave his brother. By hanging in there as long as he did, Thomas gave our doctors a chance to do a very controlled Delayed Interval Delivery in optimal circumstances, which ultimately gave Milo the best chance possible. Still, today we are missing Thomas very much.
But a year ago today, we also decided to take charge of Laurie's pregnancy and stop just listening to our doctors without questioning. We didn't accept what was offered to us without a challenge--we learned enough to know what to ask about and demanded the type of care we thought made the most sense. And we shared in hopes that others would learn from our experiences. We've already been in touch with a few people through this blog who did just that, and we're proud that Thomas' legacy lives on through their survivors.
130 days after we lost Thomas, Milo finally joined us, our miracle baby. His brothers were surely watching out for him from above and keeping him safe during the many months that Laurie spent on bed rest.
Wednesday, February 6, 2013
Twins and Cervical Insufficiency/Incompetent Cervix: Top 5 Things to Know for Moms Expecting Multiples
In the world of blogs, everyone loves a top 5 list, right? And as I have spent a lot of time participating in various online communities related to incompetent cervix/cervical insufficiency, I see a lot of the same questions again and again. So I thought I'd write up a quick post to respond to a lot of things that Moms expecting multiples with diagnosed IC or with suspected/possible IC should know. Just some little odds and ends we learned along the way during our journey in talking to a very large number of doctors, and doing lots of our own research as well.
Monday, October 15, 2012
Pregnancy and Infant Loss Remembrance Day
Today, October 15th, is Pregnancy and Infant Loss Remembrance Day.
Obviously, as you can see from our story, we've had our share of losses. At 7 PM, I'm not sure exactly what I'll be doing, whether it's lighting a candle, flipping on the porch light, or more likely than not, just thinking about Thomas and Joseph while giving Milo a bath, but either way it's definitely a day where the thoughts of our two angels will be heavy on my mind.
For those who have their own experiences with miscarriage, stillbirth, and infant loss, or have family members and friends who have had losses, I hope you'll spare a few moments tonight and find your own way to remember.
Obviously, as you can see from our story, we've had our share of losses. At 7 PM, I'm not sure exactly what I'll be doing, whether it's lighting a candle, flipping on the porch light, or more likely than not, just thinking about Thomas and Joseph while giving Milo a bath, but either way it's definitely a day where the thoughts of our two angels will be heavy on my mind.
For those who have their own experiences with miscarriage, stillbirth, and infant loss, or have family members and friends who have had losses, I hope you'll spare a few moments tonight and find your own way to remember.
Friday, August 3, 2012
Is it time to take the Cervical Pessary seriously?
So in the world of cervical insufficiency, there's a number of interventions that doctors use to try and stop the cervix from changing. We've witnessed cerclages and medicinal interventions first-hand (as Laurie had Progesterone injections and some tocolytic drugs like Indocin). One thing I came across in my research and actually mentioned to our Perinatologist as a possible option while we were in the hospital trying to save the twins that he more or less laughed off was the idea of using a cervical pessary either instead of or in addition to a cerclage as a way to help provide stability to the cervix.
What is a pessary? This picture more or less shows what it is:
It's basically a plastic donut-looking thing that is placed around the part of the cervix that protrudes into the vaginal canal. It seems that it mostly is used to help with cases of uterine or cervical prolapse to hold the cervix in place and prevent it from dropping into the vagina (I guess it's used more with bladder/incontinence issues resulting from prolapse), but some retrospective studies had mentioned about occasions of using a pessary to help stabilize the cervix in lieu of or in addition to a cerclage. In general, I don't think most doctors really considered them a normal intervention and didn't put much credence in the idea of a pessary to really make a difference in trying to help someone with CI. Our doctors certainly didn't think much of them.
Well, just in the last few months, a study was published out of Spain where the doctors actually did a randomized multi-center trial and demonstrated significantly reduced rates of delivery prior to 34 weeks with a pessary. The women in the trial were all diagnosed with possible cervical insufficiency based on ultrasound, with less than 2.5 centimeters of cervix between 20-23 weeks. In the women who did not have a pessary, 27% had delivery prior to 34 weeks. In the pessary group, only 6% delivered prior to 34 weeks. And there were no serious adverse effects reported. Certainly, more research needs to be done, but this study is the first really ringing endorsement of the pessary as a very low-impact, low-risk, inexpensive way to stabilize a weak cervix.
It just makes me wonder--if the doctors at our hospital had put a pessary in place to help stabilize Laurie's cervix until the cerclage could be placed, would that have made a difference for us? Would it have kept her stable for even an extra few days? Who else could benefit from this? What about a pessary for someone who has had PPROM and thus isn't a cerclage candidate due to infection risk? Certainly hoping that other doctors will take a cue from this Spanish study and give the pessary a closer look.
What is a pessary? This picture more or less shows what it is:
It's basically a plastic donut-looking thing that is placed around the part of the cervix that protrudes into the vaginal canal. It seems that it mostly is used to help with cases of uterine or cervical prolapse to hold the cervix in place and prevent it from dropping into the vagina (I guess it's used more with bladder/incontinence issues resulting from prolapse), but some retrospective studies had mentioned about occasions of using a pessary to help stabilize the cervix in lieu of or in addition to a cerclage. In general, I don't think most doctors really considered them a normal intervention and didn't put much credence in the idea of a pessary to really make a difference in trying to help someone with CI. Our doctors certainly didn't think much of them.
Well, just in the last few months, a study was published out of Spain where the doctors actually did a randomized multi-center trial and demonstrated significantly reduced rates of delivery prior to 34 weeks with a pessary. The women in the trial were all diagnosed with possible cervical insufficiency based on ultrasound, with less than 2.5 centimeters of cervix between 20-23 weeks. In the women who did not have a pessary, 27% had delivery prior to 34 weeks. In the pessary group, only 6% delivered prior to 34 weeks. And there were no serious adverse effects reported. Certainly, more research needs to be done, but this study is the first really ringing endorsement of the pessary as a very low-impact, low-risk, inexpensive way to stabilize a weak cervix.
It just makes me wonder--if the doctors at our hospital had put a pessary in place to help stabilize Laurie's cervix until the cerclage could be placed, would that have made a difference for us? Would it have kept her stable for even an extra few days? Who else could benefit from this? What about a pessary for someone who has had PPROM and thus isn't a cerclage candidate due to infection risk? Certainly hoping that other doctors will take a cue from this Spanish study and give the pessary a closer look.
Sunday, July 15, 2012
Yet another advocacy example
Milo has been alive for just a few days, and already we've had a case where advocating for a level of care ended up being important. When I called our Pediatrician to let them know Milo was born, they said they didn't need to see him until his 2-week well appointment. We were a little concerned about waiting 2 weeks for his first checkup, especially given his small size, and talked to a number of doctors and nurses at the hospital before we left. They all suggested we should be seen sooner.
So we called back the Pediatrician and ended up being seen the day after discharge. This ended up being really important as Milo was a little jaundiced (very common for any newborns, more common in ones born pre-term or right around term), enough that the doctors wanted him to get a jaundice blood test. And the test levels were high enough that he needed to be rechecked the next day.
The most important good news is that his levels were lower the second day, so the docs aren't too worried anymore, and that's great. But once again, it's another example of how you really need to advocate for the care you think is important, which doesn't always match with what your doctor might think.
And while I'm here, why not share another picture of our awesome and definitely not jaundiced little miracle.
So we called back the Pediatrician and ended up being seen the day after discharge. This ended up being really important as Milo was a little jaundiced (very common for any newborns, more common in ones born pre-term or right around term), enough that the doctors wanted him to get a jaundice blood test. And the test levels were high enough that he needed to be rechecked the next day.
The most important good news is that his levels were lower the second day, so the docs aren't too worried anymore, and that's great. But once again, it's another example of how you really need to advocate for the care you think is important, which doesn't always match with what your doctor might think.
And while I'm here, why not share another picture of our awesome and definitely not jaundiced little miracle.
Saturday, July 7, 2012
Welcome!
We started this blog to tell the story of our son, Milo Thomas, and the miracles it took to bring him here, safe and healthy. We wanted people to learn from our mistakes and triumphs. The long road we have walked to parenthood has been complicated and heartbreaking, but the end of that road has been a true medical miracle.
The blog stands as a testament to what we have been through and a tribute to the two sons we lost, Joseph and Thomas, and of course to our son Milo, who we cherish every day. We'll periodically update on how Milo is doing as he grows older. We'll also share stories and information about some of the challenges we've faced (pPROM, Cervical Insufficiency and Delayed Interval Delivery) in the hopes of helping others cope with their own complicated pregnancies.
Please note that we are not doctors and nothing shared here should be constituted as medical advice. We are simply people who have experienced a few serious pregnancy complications and were able to overcome them--not by just trusting our doctors and leaving the rest up to fate, but by becoming educated advocates for the standard of care we felt was appropriate and fighting for what we felt we needed. We hope to help inform others so they can work with their own doctors and advocate for their own care in the same way that we were able to. And we hope any medical professional who happen to come across this blog takes this as an opportunity to learn more about some of the cutting-edge possibilities to deal with pregnancy complications and gets a glimpse into the human side of what a medical miracle looks like.
The blog stands as a testament to what we have been through and a tribute to the two sons we lost, Joseph and Thomas, and of course to our son Milo, who we cherish every day. We'll periodically update on how Milo is doing as he grows older. We'll also share stories and information about some of the challenges we've faced (pPROM, Cervical Insufficiency and Delayed Interval Delivery) in the hopes of helping others cope with their own complicated pregnancies.
Please note that we are not doctors and nothing shared here should be constituted as medical advice. We are simply people who have experienced a few serious pregnancy complications and were able to overcome them--not by just trusting our doctors and leaving the rest up to fate, but by becoming educated advocates for the standard of care we felt was appropriate and fighting for what we felt we needed. We hope to help inform others so they can work with their own doctors and advocate for their own care in the same way that we were able to. And we hope any medical professional who happen to come across this blog takes this as an opportunity to learn more about some of the cutting-edge possibilities to deal with pregnancy complications and gets a glimpse into the human side of what a medical miracle looks like.
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