One Mom’s Journey: A Lesson in Love, Life, and Loss

Written by Jodi Rooney

The fairytale starts here…

When I signed up to be a mom, I signed up for the fairytale version. I wanted an uneventful pregnancy, a quick natural childbirth, a typical stay in the hospital, baby next to me the entire time. What I got was quite different. If you ask me now, if I knew then what I know now, would I still have become a mom, the answer is an unequivocal YES. But honestly, I would have done certain things a bit differently.

The fairytale started in 2005, when we were actively trying to conceive. It only took two months and we had ourselves a “bun in the oven.” The typical symptoms of pregnancy took hold and the first three months were filled with varying emotions and nausea. The next six months were wonderful. My once girly figure gave way to a beautiful bump that I wouldn’t trade for the world. Ending my 37th week, I awoke in full labor. The baby was coming and there was nothing I could do. Six hours later my little girl was under the bright lights of the delivery room, being checked to ensure she was unaffected by a meconium-filled sac. Deep breath, she was ok.

A day and a half later, the “not what I had expected” started. My daughter was admitted to the NICU for observation for fear of dehydration and some possible obscure genetic defect. All ended well, and my daughter came home after a 2-day NICU stay – happy and healthy. We were a little worse for wear, but we had our beautiful daughter.

Fast forward to 18 months later (2007). Pregnant again. Bring on the extreme morning sickness, twice as bad as my first. I told myself I can get through it all, I really can. We were going to have 2 kids, just like we planned. I was happy. January 2008’s ultrasound confirmed differently. We were going to add not one, but two kids to our current family dynamic.

Secretly, I always wanted to have twins. There was something so unique about it. Though it had a rocky start, my fairytale was going to continue. Shocked when we heard the news from the ultrasound technician, I was also very excited. What follows is NOT what was supposed to happen. It changed my life forever and the reason why I became involved in Parent Talk’s Caring Committee, the March of Dimes, and partnering with another Parent Talk mom to start a Pre-, Peri-, and Neo-natal Loss Yahoo! Group.

The fairytale ends here…

Two months after finding out the big news, I was placed on bed rest for premature thinning of my cervix. Two weeks later – five days after my daughter turned two – I was rushed to Brigham and Women’s for what was to be an emergency c-section to deliver my sons at 25 weeks and two days gestation. For me, I was delivered into my own personal hell. I couldn’t even image what my husband was going through at the time, watching as all this played out in front of him.

My sons, later learned to be identical, laid still in the NICU weighing in at 1 pound, 15 ounces each. Hooked up to an unimaginable number of tubes and wires, they were no longer in the safe haven of my belly. I was no longer in control.

Doctors, nurses, tests, and more tests – the first two days after the birth were a war zone. We were dodging the bullets of extreme prematurity. But it wouldn’t last long. The mother of all bombs exploded right in front of our faces. We were told that Baby B (second of the boys to be born, and whom we named Brendan) had a Grade 4 brain bleed, perforated lungs, and a failing heart. Chances of survival were slim. Quality of life if he did survive? Very poor. Two parents faced with a decision no parent should ever have to make. I won’t go into any of the extreme details of how we knew what decision to make, but we trusted our hearts. On Brendan’s fourth day of life we held our baby boy until he took his last breath. At that moment, the normal in my life was no longer. I was faced with grieving for my lost son and the trials of helping my other son survive the next few months all the while ensuring my 2-year-old was getting what she needed.

“It takes a village…” comes to mind at this moment. If not for the support system we had created since moving to the area, we would not have weathered this storm as well as we did. Enter in family, friends, and Parent Talk. Food was delivered to our door, gift cards for local restaurants around the hospital were sent to us in the mail, and an outpouring of love and prayer from all we knew (and didn’t know). It was about two months into this new journey that I realized I needed to do something positive with this horrifying experience.

The fairytale is rewritten…

After 100 days in two NICUs and almost a year of isolation (for fear of RSV or other illnesses that could be transmitted to my son, Leo), I was able to really start processing all that had happened. I was able to ask myself: “How could I best give back to the community that has helped my family,” “What can I do to help others in similar situations,” and “What can I do with the resources I currently have to make a small difference in the lives of others.” The answers came to me very easily. The answers even helped me to see that I need not do this alone. My resilient family can be a part of this too. What better way to teach my children the gift of giving then by getting them involved in the cause.

Parent Talk Caring Committee

It was a friend who got the ball rolling and involved Parent Talk’s Caring Committee in supporting our family. At first it was only to help while I was on bed rest and maybe after the boys were born. I figured I would be out of commission for a few weeks and then everything would go back to “normal.” Little did I know a few weeks turned into a few months and nothing was normal about it. Through the use of a website, dinners were delivered to our door two to three times a week for more than two months. It was a blessing not to have to think about dinner when I was spending most of my day in the NICU with my son. Once back on my feet, I joined the committee and volunteer to provide meals to others who could use a little love during a stressful time. To join the committee, visit Lotsahelpinghands.

March of Dimes, March for Babies

I used to think “folic acid” when I thought of the March of Dimes (MOD). In college I participated in “Walk America” as a community project for my sorority. Little did I know that MOD would one day save my son’s life.

In Leo’s case, the MOD gave him the drug surfactant to strengthen his undeveloped lungs. In other cases, the MOD gives babies: the PKU test (an inherited condition that can cause mental retardation if left untreated); testing for over 40 inborn metabolic disorders; a newborn hearing screening; access to a NICU; and access to sonograms and ultrasounds, an innovation pioneered by March of Dimes.

On May 12, 2012 my family will participate in our fourth walk together and I am thrilled to help lead a group of families to walk in the name of Parent Talk. Click here to join the team.

Pre-, Peri-, Neo-natal Loss Group

We are out there, but we blend in with our surroundings. Our pain is hidden deep in our hearts. Our losses are unique, yet we all have lost a future we held near and dear to our hearts. We talk about our loss only when we feel it is safe to do so and with those who are truly willing to hear our pain. We look for the comfort of knowing we are not alone. The first few days in the NICU after Brendan’s death, I truly thought I was alone. It took weeks to learn that I was not. There are many in Parent Talk who have faced miscarriage, stillbirth, and newborn death, whether it be a singleton or multiples. Parent Talk has established an online Yahoo group for those who have experienced a pre-, peri- or neo-natal loss or for those who know someone who has experienced a loss and want to learn more about how they can support the family. To learn more or join the group, visit us here.

The somewhat “Happily ever after”…

It will be four years this April since the start of this unexpected journey my family has taken. For most of my life I was a believer that things do happen for a reason, we just need to wait it out, whether it takes days, months, or years, until the reason presents itself. I lost that belief when the boys were born and Brendan was taken from me. How could his death and such an early birth have any purpose in my life? It was just cruel and unjust. Four years later, I can say that the early birth and death has given my life new meaning and direction. It has opened doors I never saw myself walking through. And I am grateful. Grateful for the new friends I have met, the grieving parents I have supported, and the idea that I can make a difference, even a small one, in the life of another person.

To help reach our fundraising goal of $3,000, Parent Talk, a Needham-based non-profit organization, is combining forces every Tuesday in April with Not Your Average Joes Needham to fundraise for Parent Talk’s March for Babies team. Patrons who eat at or take out from Not Your Average Joes in Needham, and show Parent Talk’s March for Babies flyer, will have 15% of their bill donated to the team. The printable flyer is located at www.scribd.com/doc/87740193/NYACause-ParentTalk

 

Join forces with Parent Talk and help support the March of Dimes by eating at or taking out from Not Your Average Joes Needham on any Tuesday in April. And don’t forget to print and bring the team flyer with you in order for Parent Talk’s team to earn 15% of your bill. To make a direct donation to Parent Talk’s March for Babies team, visit:

http://www.marchforbabies.org/team/t1709809.

Help me raise research funds to prevent prematurity.

 www.marchforbabies.org/jodirooney

 Join the Parent Talk Team Today: http://www.marchforbabies.org/team/t1709809

Jodi Rooney lives in Needham with her husband, 2 living children, and guardian angel. Jodi is an active member in Parent Talk and a member of the NICU Parent Advisory Group at Brigham and Women’s Hospital. She is also a member of Newton Wellesley’s Planning Committee for their yearly HEAL service – a remembrance service for families who have lost a baby.