Tuesday, April 23, 2013

March of Dimes Research

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.

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.

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.

Tuesday, April 24, 2012

Happy Birthday to My Angels

Dear Caiden and Kaylie,

A year ago today I held you in my arms. We had so little time to spend with you. So many hopes and dreams were packed into those few fleeting hours. So many "I love yous" were left unsaid.

This last year has been a struggle. For the first six months we said that we would give anything to have you back in our arms. But then we conceived Jordyn. How could we say that we would give up this new precious life to have you back? We had to work through those feelings and realize that we still love you with all our hearts, even while we love this growing new life.

As part of our grieving process, we looked for an outlet. We found that in the March of Dimes. We were so pleased that in the first year we were able to raise over $1,800 with only about 3 weeks of fundraising. The walk, which took place less than a month after your birth, was very emotional, but a great culmination to a crazy month.

After the walk, I started making hats and blankets to donate back to the hospital to give other families the comfort that we had received from the hats and blankets we received for you. This lead to the formation of An Angel's Love. We made our first donation back to the hospital in September. We are making another donation today in your memory.

Since last year's March for Babies, Daddy and I have continued our involvement in the March of Dimes. We gave a speech at the Nurse of the Year Awards Gala, where we talked about the wonderful nurses who cared for us during our stay in the hospital. I was lucky enough to get to go back to the hospital and ask them to be the presenting sponsor for this year's walk. They accepted, which has made this year's walk so much more successful already.

Daddy has been planning a softball tournament in your names. We have put a lot of work into it and it is all finally starting to pay off. He has been spreading the word to anyone and everyone, making sure that your lives mean something and that we can make a difference for others in your names. Now, a month before this year's walk, we have already far surpassed last year's fundraising, and we are still going strong.

All that we have done over the past year has been made possible because of you two. We wish for all the world that we could have you with us. But since that is not possible, we are grateful for what you have given us: a cause to pour all of our passion into.

We will continue to carry you in our hearts everywhere we go. We will often wonder what your lives would have been like: when would you have said your first word or taken your first step? would you have been an athlete? where would you have gone to college? who would you have married? what career would you have chosen? But through all these milestones, we will always remember what you have given us. I only hope that we can give back as much as we have received.

On this very special day, Happy Birthday to my twin angels. <3<3



Wednesday, January 25, 2012

The Cerclage

A cerclage is a procedure to place a stitch or stitches in the cervix of a pregnant woman to keep the cervix closed as long as possible. This can be done as an emergency procedure if a woman's cervix is found to be opening (or shortening) too early, as long as her water hasn't broken. This can also be done as a preventative measure when there is reason to believe that there may be a problem later in the pregnancy.

Although we don't have an answer as to what went wrong in our last pregnancy, we know that the cervix opened too early. That early opening may have perpetuated everything else that happened, or some other culprit may have caused the cervix to open early. Either way, my doctor recommended we have the procedure done. He said if we agreed, it would be done around 13 weeks, once the risk of spontaneous miscarriage was significantly decreased.

The benefits of the procedure include: strengthening the cervix, keeping the cervix closed beyond when it may have opened on its own, and providing piece of mind to couples who have experienced a previous loss. The risks include: all the normal risks that come with any surgery with anesthesia (infection, permanent injury, death, etc.), and also the risk of disrupting the pregnancy, causing miscarriage.

My husband was on board with the procedure from the beginning, but I was less sure. For one, I hated to admit that there might be something wrong with me that had caused our loss. Second, it made me nervous to interfere with nature, especially considering the risks. In the end, I decided that we could either worry about the procedure and, as long as it went well, be somewhat more relaxed for the rest of the pregnancy, or we could worry for the whole pregnancy. I decided the former would be a little easier.

After our trip to the ER the Sunday before the surgery, when I was convinced my cervix might be opening already (and everyone in the ER looked at us like we were crazy), it became clear that this was a very good idea. (The outcome of the ER visit was that everything was fine, and when we explained our history to the ER doctors and nurses, they were much more understanding of why we were so crazy).

We went in for the surgery on Wednesday, January 11th. We were very nervous. The nerves were made worse when, before the surgery, the nurse could not find the baby's heartbeat, nor could my doctor. After many nerve racking minutes, the nurse brought an ultrasound machine. The baby quickly appeared on the ultrasound screen, with a strong heartbeat (150bpm). Apparently the labor floor (which is where they performed the surgery) is not well equipped to hear tiny babies' hearts. The nurse assured us that their Doppler equipment was not as sophisticated as the equipment at my doctor's office. After the surgery, they again could not find the heartbeat with the Doppler, so they again used the ultrasound machine to confirm that the baby was fine.

Before the surgery, they gave me a spinal (like an epidural, but the medicine goes into the spinal space instead of the epidural space - that's how the nurse described it). I was already in the OR and couldn't hold my husband's hand as I had hoped, so my nurse held my hand. The nurse anesthetist had warned me that my blood pressure could drop which could cause me to vomit or faint. Plus I had heard that the needle for an epidural was painful. I was most concerned about the consequences of the anesthesia, rather than the surgery itself. The needle was painful, but not unbearable and I had no problems after the medicine went in. The hardest part after that was throwing modesty to the wind while wide awake in a room with about 10 people in it!

Once the surgery was over, I went to a recovery room for an hour and then back to a regular room until I could be released. The only hiccup in the recovery was that I couldn't pee until several hours after the surgery because the numbness had not subsided enough. While I was recovering, one of our wonderful nurses from our stay in April stopped in to say hello. She said she had tried to change her schedule when she heard that we would be there, but she wasn't able to make it work. However, she had to come in for a meeting, so she stopped in to say hello to us.

When I was finally able to leave, I went home to rest with my feet up for a few days. The doctor said everything went very well, and I got the thumbs up to return to normal activities at my follow up appointment the next week. Hopefully this procedure will give us the peace of mind we hoped for in this rollercoaster ride.

Friday, January 13, 2012

The Birth Certificate

Until a new bill recently passed, New York State did not acknowledge the birth of any baby born still (birth certificates are called "Certificate of Live Birth", not applicable if the baby was born still). In addition, the parents do not receive a copy of the fetal death certificate, unless they request it (not exactly something you are thinking to ask for in the hospital). You can request the certificate after the fact, but must have the request notarized. There is no need for a name of the baby on the death certificate, so they baby remains unacknowledged. As far as New York State is concerned, the baby was never born, so therefore, a baby never actually died; they only acknowledge the termination of the pregnancy.

Thanks to some very dedicated mothers, this will soon change. Beginning in March, New York State will offer Certificates of Stillbirth. The law is retroactive, so anyone who has had a stillbirth (at more than 20 weeks gestation) can request a birth certificate for their baby. (Our stillbirth was at 20 weeks and 4 days, so we cross the required threshold to qualify.)

After coming home from the hospital, it took a while to sink in that we would not receive birth certificates. Once it did, we were very upset, but poured our energy into the March of Dimes. We were so grateful to these wonderfully dedicated mothers for making this happen. We are very excited for March, when we can request the certificates for our babies. We will proudly display them as proof that our babies were, in fact, born.

Thursday, January 5, 2012

Trying Again

In an effort to cope with the loss of our twins, my husband announced (to anyone who would listen) that we would be trying again as soon as the doctor gave us the okay. I wasn't sure that I would be ready right away, but I was devastated when the doctor told us at our follow up appointment that he recommended we wait six months before trying again. Our grief over the loss of the twins was three-fold: (1) the loss of Caiden and Kaylie - a pain that would dull with time, but could never go away completely, no matter how many more children we have, (2) the loss of the excitement of twins - this part could be relieved if we have twins again in the future, but my doctor assured me that in all likelihood we will never conceive twins again (what he perceived to be good news, but I took as another devastating blow), and (3) the loss of having a baby, especially while all of our friends were bringing home healthy babies. The last, at least, was something that we could fix by starting to try again. So, although I didn't want to start trying the next week, I thought a month or two would be a good waiting period.

At my follow up appointment to the D&C, the doctor had changed his mind. He said that it was good to wait six months to allow my body to return to normal before getting pregnant again, but since we didn't know that we would be successful on our first try, he thought it was okay for us to start trying sooner. I was ecstatic! Much sooner than I had originally anticipated, I would be able to do something to relieve some of our grief.

However, I did not anticipate the emotional roller coaster that was to come. I knew that when I was pregnant again it would be the craziest roller coaster ride we had ever been on, but I didn't expect the effort to get us there would also be a roller coaster. Over several agonizing months, we experienced the roller coaster - the raw emotions of "moving forward" after our loss (not that we were forgetting or minimizing our loss, but working to move forward nonetheless), the tears with every negative pregnancy test from sadness that we were unsuccessful yet again and frustration about the unfairness that we had to go through the roller coaster again the next month. During this time, I lived my life two weeks at a time: two weeks of doing whatever I wanted: drinking, eating raw cookie dough, getting tattoos (okay only one), and two weeks of being on my best behavior in case we had been successful.

However, thankfully, after these agonizing months, we had a positive pregnancy test! I had expected to be filled with mixed emotions and most likely more scared than happy at the sight of those two little pink lines, but just the opposite happened. I was over the moon! Scared, of course, but that was secondary to my excitement. I took the test on a Sunday morning. I was the lector at church later that morning. At my church, the lector sits all by themselves, to the side of the Altar. It was a good thing I was alone, because during the quiet prayer times, I could barely keep the tears of excitement out of my eyes.

One additional exciting note is that the due date is our wedding anniversary! I fully expect a roller coaster of emotions until then (or whenever the baby decides to arrive), but I hope that I can enjoy every crazy minute of it. I know all too well that things can go terribly wrong in a heartbeat, and then all you have to look back on are the pictures and memories. So my goal is to get as many pictures, videos, audio files of our baby as possible and make as many memories as one small family can manage over the next several months. If anything goes wrong, at least we will have these things to remind us of happier times, and if we end up with a healthy baby, we will have even more to treasure.