When we were writing the obituary for Caiden and Kaylie, we wanted to ask for charitable donations in lieu of flowers. I thought about where donations could be made. The babies had received hats and blankets, which meant a lot to us, so I picked Project Linus. I remembered seeing March of Dimes commercials when I was younger about giving every baby a healthy start, so I decided they would be the other charity. I did not know much about either charity at the time.
When we got home from the hospital, I started to look at the March of Dimes' website to learn more about them. I found out that the annual March for Babies was in just a few weeks and decided to sign up for it. I posted a link on facebook and sent out a few e-mails asking for donations. I spent my idle time planning for the walk. As the walk approached, I worried that once it was over, I would have too much time on my hands for my own good while in the thick of the grieving process, so I contacted the March of Dimes and asked to be connected with the local chapter.
I met with the local chapter and began forming a relationship with the people there. I joined the Family Teams Committee that meets once a month and I have attended, as a guest or volunteer, a number of March of Dimes events. Chris and I were asked to serve as the Ambassador Family for the Nurse of the Year Awards in 2011. Our responsibilities as the Ambassador Family centered around a speech we would give at the event. In preparing our speech, I asked if the March of Dimes was funding any research related to preventing pre-term birth specifically for pregnancy of multiples. The answer was that there was no research currently underway specific to pregnancy of multiples, but that any findings that applied to singleton pregnancies should apply to multiples too. I found out that there was research currently funded in Buffalo, just an hour down the road from us and I was happy to add that to my speech.
The diagnosis from my early delivery was suspected incompetent cervix (IC). Incompetent cervix is just how it sounds: the cervix does not behave as it should and it opens prematurely. After successfully carrying a subsequent pregnancy to term and beyond, and being on Pitocin for 18 hours of labor because my cervix did not want to open, the doctors suggested that IC may not be what caused my pre-term labor and that it was simply caused by "the stress of having twins". While it's comforting to know that I likely do not have IC, "the stress of having twins" doesn't sound like much of a diagnosis to me, especially because people have twins all the time. IC has relatively effective treatments available, but how do you treat "the stress of having twins", other than attempting to prevent a subsequent twin pregnancy? The lack of a diagnosis or even a suspicion as to what went wrong is very disheartening. How do we know that whatever happened then won't happen again? What if we end up pregnant with twins again? Are we doomed to lose them too?
Recently, I looked at the March of Dimes prematurity research page. This page summarizes some of the research that they are funding. I was surprised and thrilled to find that they are funding research for uterine stretching (commonly found in pregnancies of multiples and pregnancies with excess amniotic fluid). This research looks at the tie between uterine stretching and pre-term labor. If they find a link, further research can look for a way to predict and prevent the pre-term labor.
This research gives me hope. If a link is found between uterine stretching and pre-term labor, I would be much more comfortable believing that was the cause of my pre-term labor than "the stress of having twins". It also gives me a diagnosis, which would provide some comfort and make it easier to explain to others. (Saying that I lost twins because my body couldn't handle "the stress" makes me feel inferior when women give birth to healthy twins all the time. - NOTE that I now know of a number of women who have lost twins in similar situations, but those cases are clearly not as public as the women who give birth to healthy twins.)
In addition, if a link is found between uterine stretching and pre-term labor, new research can begin to determine preventative measures. These preventative measures may or may not be found during my childbearing years, but even if not, it will help spare others from the grief of losing a twin pregnancy to pre-term labor.
I have been a strong supporter of the March of Dimes since coming home from the hospital. I believe in all the work they do. Being involved in their mission has given me comfort and hope since the beginning. But now, with the new research underway, my hope and optimism is stronger than ever.
*Thank you for reading my post. Please consider making a donation to the March of Dimes through the banner to the right to help fund all the important research they do, including the study mentioned in this post. Find out more about their research here: http://www.marchofdimes.com/research/prematurity_grants.html.
Tuesday, April 23, 2013
Sunday, March 24, 2013
The Hardest Time of Year
As Easter approaches and I struggle with reliving every moment of our loss, I reflect on why this is such a hard time of year:
Caiden and Kaylie were born on Easter Sunday 2011. We and our families are Catholic and observe Lent. Lent has become a particularly hard time of year for me. Before Lent began in 2012, I assured everyone that I would be fine at Easter. After all, we certainly hadn't celebrated Easter in the hospital, and other than knowing that it was Easter, our loss had no ties to that day. However, what I didn't consider was everything that led up to Easter and how much that would remind me of my pregnancy. Simple things like trying to find a non-meat entree on Fridays served as a powerful reminder of that same time the previous year. No, Easter itself did not hold a direct tie to our loss, but all of the reminders along the way make it a difficult time. Add on top of that making a sacrifice for Lent. How do you sacrifice more than your first born son and daughter?
At the same time that Easter is approaching, April 24th is also nearing. Caiden and Kaylie were actually born on April 24th and this is the day that we commemorate their birth. In addition, we are gearing up for the March for Babies in the same timeframe. All of these things come together to form the perfect storm of emotions.
I love the work that we do with the March of Dimes. I am proud of the money we have raised to date and hope to continue to be a Top 5 team for years to come. I intend to involve Jordyn in the events as well, teaching her the importance of giving back. However, it is an emotionally hard road leading up to the walk. There are a number of events that we attend during this time where we tell our story. We also share our story all over facebook in an effort to prompt our friends and family to join our team or make a donation. We contact a lot of local businesses requesting donations or other support, which includes our story in brief. I've had a lot of practice, so the story is now concise and the words easily leave my lips, but every time I share or prepare to share this brief story I remember the whole story. I relive the highs and the lows and I replay the whatifs over and over.
I expected that last year, the first year after our loss, would be hard. I knew that every new milestone, each holiday that passed, would hold a certain amount of pain. But I thought the second year would be easier. Especially now that we have a healthy daughter to appreciate and we are building on last year's very successful fundraiser, I expected to breeze through the season emotionally.
I know now that this season will continue to bring highs and lows. We will experience Easter in a new way this year with Jordyn. We will celebrate another successful fundraiser and fundraising season when we wrap up in May/June. I will feel good about giving back and even more, I will feel good about remembering our babies. But I understand now that remembering our babies comes with both grief and joy.
Caiden and Kaylie were born on Easter Sunday 2011. We and our families are Catholic and observe Lent. Lent has become a particularly hard time of year for me. Before Lent began in 2012, I assured everyone that I would be fine at Easter. After all, we certainly hadn't celebrated Easter in the hospital, and other than knowing that it was Easter, our loss had no ties to that day. However, what I didn't consider was everything that led up to Easter and how much that would remind me of my pregnancy. Simple things like trying to find a non-meat entree on Fridays served as a powerful reminder of that same time the previous year. No, Easter itself did not hold a direct tie to our loss, but all of the reminders along the way make it a difficult time. Add on top of that making a sacrifice for Lent. How do you sacrifice more than your first born son and daughter?
At the same time that Easter is approaching, April 24th is also nearing. Caiden and Kaylie were actually born on April 24th and this is the day that we commemorate their birth. In addition, we are gearing up for the March for Babies in the same timeframe. All of these things come together to form the perfect storm of emotions.
I love the work that we do with the March of Dimes. I am proud of the money we have raised to date and hope to continue to be a Top 5 team for years to come. I intend to involve Jordyn in the events as well, teaching her the importance of giving back. However, it is an emotionally hard road leading up to the walk. There are a number of events that we attend during this time where we tell our story. We also share our story all over facebook in an effort to prompt our friends and family to join our team or make a donation. We contact a lot of local businesses requesting donations or other support, which includes our story in brief. I've had a lot of practice, so the story is now concise and the words easily leave my lips, but every time I share or prepare to share this brief story I remember the whole story. I relive the highs and the lows and I replay the whatifs over and over.
I expected that last year, the first year after our loss, would be hard. I knew that every new milestone, each holiday that passed, would hold a certain amount of pain. But I thought the second year would be easier. Especially now that we have a healthy daughter to appreciate and we are building on last year's very successful fundraiser, I expected to breeze through the season emotionally.
I know now that this season will continue to bring highs and lows. We will experience Easter in a new way this year with Jordyn. We will celebrate another successful fundraiser and fundraising season when we wrap up in May/June. I will feel good about giving back and even more, I will feel good about remembering our babies. But I understand now that remembering our babies comes with both grief and joy.
Friday, February 22, 2013
What a Difference a Year Makes
As I hung the ornaments on the Christmas tree this year, I reflected back on what a difference a year makes.
Last year Christmas was a difficult time. We had lost our twins eight months earlier. We had had some time to grieve, but each new holiday was hard. I watched (through facebook) as friends that I had been pregnant with were gearing up for their baby's first Christmas. I participated in all kinds of traditions that I had been looking forward to my babies experiencing with me. We knew before Thanksgiving that we were expecting again, which did help to dull the pain, but only a little.
As Christmas loomed, I had a conversation with a sales guy that made the season harder. In an effort to connect with me so that he'd have a better chance to get the sale, he started a conversation about kids at Christmas. He began by asking if I had any kids, a painful question in itself. When I said no, he asked if I wanted them. I really felt it was none of his business, but didn't feel I could say that to him, so I answered yes. Then he went on for probably five minutes about how magical Christmas is when you get to experience it with your children. In retrospect I wish that I had stopped him and explained that I was painfully aware of how magical Christmas should have been in 2011, with twins opening presents for the first time. At least then I wouldn't have suffered in silence.
Christmas time was also hard because in an effort to avoid upsetting me, many of my close family and friends didn't mention Caiden and Kaylie at all. It really reinforced for me the saying I had heard, "The name of my child may bring tears to my eyes, but it never fails to be music to my ears". Even when others didn't mention their names, they were still forefront on my mind.
In 2011, we received a number of "memory" Christmas ornaments, which we hung on the tree. My heart was so heavy as I hung those ornaments. Those ornaments meant a lot to me and I was glad to be able to incorporate Caiden and Kaylie in our Christmas traditions. However, those ornaments also reinforced all that we had lost and what we were missing out on. This year, they were still displayed prominently on our tree, but it was much easier to hang them. The whole Christmas spirit was very different this year. This year, Christmas was about celebration. We were thrilled to have Jordyn here to celebrate it with us. We were also grateful for a number of connections we had made because of our loss. We met some very good friends along our journey and found a cause that we could both pour our grief into.
Each year Christmas, and holidays in general, will be a time that we especially remember what we have lost. I hope that these reminders of our loss will also remind us to "never take one single breath for granted" because every moment is so precious.
Last year Christmas was a difficult time. We had lost our twins eight months earlier. We had had some time to grieve, but each new holiday was hard. I watched (through facebook) as friends that I had been pregnant with were gearing up for their baby's first Christmas. I participated in all kinds of traditions that I had been looking forward to my babies experiencing with me. We knew before Thanksgiving that we were expecting again, which did help to dull the pain, but only a little.
As Christmas loomed, I had a conversation with a sales guy that made the season harder. In an effort to connect with me so that he'd have a better chance to get the sale, he started a conversation about kids at Christmas. He began by asking if I had any kids, a painful question in itself. When I said no, he asked if I wanted them. I really felt it was none of his business, but didn't feel I could say that to him, so I answered yes. Then he went on for probably five minutes about how magical Christmas is when you get to experience it with your children. In retrospect I wish that I had stopped him and explained that I was painfully aware of how magical Christmas should have been in 2011, with twins opening presents for the first time. At least then I wouldn't have suffered in silence.
Christmas time was also hard because in an effort to avoid upsetting me, many of my close family and friends didn't mention Caiden and Kaylie at all. It really reinforced for me the saying I had heard, "The name of my child may bring tears to my eyes, but it never fails to be music to my ears". Even when others didn't mention their names, they were still forefront on my mind.
In 2011, we received a number of "memory" Christmas ornaments, which we hung on the tree. My heart was so heavy as I hung those ornaments. Those ornaments meant a lot to me and I was glad to be able to incorporate Caiden and Kaylie in our Christmas traditions. However, those ornaments also reinforced all that we had lost and what we were missing out on. This year, they were still displayed prominently on our tree, but it was much easier to hang them. The whole Christmas spirit was very different this year. This year, Christmas was about celebration. We were thrilled to have Jordyn here to celebrate it with us. We were also grateful for a number of connections we had made because of our loss. We met some very good friends along our journey and found a cause that we could both pour our grief into.
Each year Christmas, and holidays in general, will be a time that we especially remember what we have lost. I hope that these reminders of our loss will also remind us to "never take one single breath for granted" because every moment is so precious.
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