Wednesday, September 18, 2013

Maggie and Violet's Story, by their mama

Post by Elisabeth
I am a mother

For many, they may not see that of me, but I am a mother. I was pregnant, watched my belly grow, could feel my daughters move and delivered them both. The difference was, they were not born alive. My husband and I did not get to take them home. We are parents to two angels.

On October 2, 2010 I married my best friend, Ryan Barlowe. We were introduced by two good friends and weren't sure the relationship would work. See, he was active duty Air Force and stationed in Anchorage, Alaska. I was working as a probation officer in Santa Barbara, California. We started talking and, boy, did we have a lot in common. We took a chance and I went to Anchorage to meet him. Since that day, we never looked back. We knew we were meant to be together. We met the challenge of a long distance relationship. Ryan proposed on May 28th, 2010 and we were married on October 2nd, 2010. I packed up my world and moved to the Final Frontier to start my life as Ryan's wife.
What an amazing journey! We always knew we wanted a family and we decided to start trying the beginning of 2012. We weren't sure what challenges we may face. You see, I'm considered high risk due to a kidney disease I was diagnosed with as a teenager. One of the side effects of the medications I was previously on was possible infertility. I had never been tested and we thought, let's just give it a shot. In March, we took a test and low and behold, we were pregnant. Our first daughter was due November 17th! We were so excited and couldn't keep it a secret. We told my mom, his parents, our friends and family. Our first appointment went well and we saw and heard baby's heartbeat. It was strong and there was our baby on the screen, bouncing around. It was surreal. We were going to be parents.

That would be our one and only appointment filled with good news. At 15 weeks we were told our little girl's brain didn't develop and she had a hole in her heart. These were signs of a chromosomal abnormality. We had heard of the risks of an amniocentesis and opted to not have it done as there was nothing we could do to change what we already knew and we knew we would always choose life. We chose to get a second opinion, as our first doctor pushed termination on us. Our new doctor understood what our goals were, to hold our baby if at all possible, even if it would only be a matter of minutes. But we wouldn’t even get a few minutes. The doctors both believed it appeared that our baby had Trisomy 18 and therefore was "incompatible with life" and there was nothing we could do to change it. Maggie was obviously compatible with life.  Her heart was beating; I could feel her move inside of me.  She was our daughter and she was going to have the longest life possible.  We chose to give her life, as long as we could. We made it to 26 weeks when our Maggie's heart stopped beating. We induced labor and delivered her on August 9, 2012. We were able to hold her, love her and spend time with her with the compassion of the hospital staff. We left the hospital, but without our little girl. We were devastated. Our world was turned upside down. We had nothing...nothing we wanted. We were parents without our baby. We'd never see her grow up, laugh, cry or even breath.

Ryan and I turned to each other through everything. We decided early on we would go to grief counseling. We actually had started the week before we lost Maggie. It helped. It was a safe place to talk about our sadness, anger, guilt and anything else we were feeling. I remember, as does my husband, what our doctor said to us after she confirmed the Trisomy 18 diagnosis and cried with us. She said something like this can either make or break a couple. She said to make it you have to realize that you both will grieve very differently and to respect that difference and don't resent it. We did grieve differently. As I would cry and become emotional, Ryan would get angry and lose himself in hobbies. But despite those differences, we turned to each other. Ryan would hold me while I cried and talk to me when I needed it. I supported Ryan's hobbies and talked him through those bouts of anger to allow us both to better understand what we were feeling and pinpoint those emotions. We actually grew closer through our sadness and grief.

We had decided to go ahead and have an autopsy performed on Maggie to confirm the diagnosis of Trisomy 18 and see what that meant for us with future children. When we got the pathology report, the prognosis was confirmed, but our doctor also told us the chance of this happening again with future pregnancies was less than 1%. Through our grief, we had a positive outlook for our future family. We could try again. And we did.
It was time to leave Alaska! My husband received new orders to Hickam AFB in Hawaii. The day before we were set to leave, we took a pregnancy test and were pregnant!! The level of excitement matched the level of fear we were experiencing. If our math was correct, we were due August 23, 2013. That was going to be just a year after we lost Maggie. But we had faith, we had to, that everything was going to be okay and this baby would be our rainbow baby; our calm after the storm of losing our first daughter.

We shared the exciting news with our families, but reserved announcements to everyone else until we got further along. We arrived to Hickam AFB and scheduled our first appointment at Tripler Medical Center with their high risk doctors and genetic counselors. At our first appointment everything was great. Baby's heartbeat was good, my health was good and all was looking good for us. Thank God! We were praying every day that this time would be different.

We went in for our 20 week ultrasound and were anticipating finding out the sex of this baby. The ultrasound was going well. Measurements were good, baby was moving and we found out we were having another girl!! It wasn't until the last few minutes that we received news that our daughter appeared to have issues with her heart. We were being referred to a pediatric cardiologist for a more thorough scan. Three long weeks we waited for that appointment obviously expecting the worst, because we had already experience the worst...losing a child.

At the appointment we found out she had a heart defect that would require heart surgery in the few first months of her little life, but was fixable. They have done these surgeries for decades and yeah it was risky, but the outlook was good. They didn't see anything else but the heart defect. We went home and cried, but were grateful it wasn't worse. So we told family and the prayers continued. We were told that the surgery couldn't be done on the island and we'd have to leave by 32 weeks to have the surgery somewhere else. We picked Primary Children's Hospital in Utah because my husband's family was there and we could stay with them. Family is so important at times like this and we didn’t have family with us before and with the Air Force in agreement of us going, we knew our baby would be taken care of.

It wasn't until we got to Utah that things started looking more dire. We were scheduled for NSTs (non stress tests) twice a week. The first few went normal with no issues, but the last one showed our little girl Violet's heart rate was taking dips and we also had high amniotic fluid. We had polyhydramnios, which they said could just be a freak thing or could be a sign of chromosomal abnormalities.  They decided to do a special ultrasound, a biophysical profile on Violet. They look for certain movements; hands, feet, fluid level and breathing. They got all of them but the breathing, so we were admitted for more long term monitoring. We also decided to do an amniocentesis. An NST was done following the amnio and her heart continued to take dips.  So they kept us admitted to the hospital until the results could come back. They were worried that Violet may have Trisomy 18, like her sister. They saw clenched hands during the ultrasound and a piece of her brain was missing that should have been there.

On Friday, July 12, 2013 we were told our baby Violet had Trisomy 18. We couldn't believe it!! How could this happen again?!?! Less than 1% chance was what we were told. This led doctors to believe either Ryan or I may carry a balanced translocation. This would mean that two of our chromosomes exchanged places on the DNA strain but would be balanced on us, but during conception would result in a chromosomal abnormality in Violet. We decided to leave the hospital and would continue with life as long as Violet could stay with us. The doctors were in agreement because they wouldn’t do any emergency procedures to save her. On the following Tuesday, we went in for our regularly scheduled appointment and our doctor told us the devastating news that Violet's heart had stopped beating. We were in shock. Fortunately, we had family with us and they drove us home in a daze. As we told the rest of the family, we were all clearly in shock. We couldn't believe this was happening again. I really believed Violet was going to shock the world and be born alive. I was broken and lost. We decided to head back to the hospital that evening to be induced. Our Violet was born sleeping on July 17, 2013.

Both of our girls are buried with my father (who passed when I was 15) in California. My husband and I returned to Hawaii and into our empty house. We had our sweet puppy, Charlotte, who is now 3 years old, to bring us some happiness and keep us from becoming too lost, as she needs us.We've started grief counseling again and it seems to be helping. Sometimes, I feel like I'm doing better this time around, almost too well. As soon as I get that feeling of guilt for doing too well, I realize I'm not doing too well. I'm doing just well enough. I have my days of total despair and tears flow readily. I'm back to work now and luckily work in an environment and with people that offer me support and compassion during this emotional time. Part of me welcomes the distraction but part of me just wants to avoid everyone and do nothing.  But I know to do that would be to open a door to a dark place I really don’t want to be in.

Ryan and I can still laugh and that alone makes me realize we'll be okay. We don't know what the chances are of Trisomy 18 happening to us again, as there just is no research on two times much less three. We told ourselves we're going to wait a year before trying again or trying anything. We know that adoption is always an option as is in vitro fertilization. Through all that we’ve gone through, we chose love and life and because of that we have no regrets. We obviously wish our girls were here with us, but for now, we lean on each other and grieve for our daughters, Maggie Elisabeth and Violet Ryan.


(we didn't have pictures taken with Maggie, which we regret, but we did with Violet.  This is of her perfect little feet and our wedding rings)


Candace Johnson said...

Hold on to that love and laughter...know that we send love and prayers every day. I pray for you two Ephesians 3:16-22...
Love more than words,
Maggie & Violet's Great Aunt Candace

Candace Johnson said...

Hold on to that love and laughter...know that we send love and prayers every day. I pray for you two Ephesians 3:16-22...
Love more than words,
Maggie & Violet's Great Aunt Candace

Anonymous said...

Beautiful words about 4 beautiful people. Know that you are in my prayers and that you are thought of daily. God gave our family two perfect little angels to watch over us and make us smile when we look to heaven for comfort. You both are strong and wonderful together and your love and faith along with family will help you through this. Love you both, Kevin Barlowe
Maggie & Voilet's Great Uncle

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