I have been so inspired by the mothers who have lost and yet give back so much. This week is no different. Emily really made an impression on me because rather than letting her grief from losing her identical twin daughters completely consume her, she began a photo project in their honor. I know so many people have found joy in finding a beautiful place, taking a picture of it, and putting Catherine and Hattie’s names on the picture.
I admire Emily’s strength and faith. I admire her desire to comfort others when it is she who deserves to be comforted. And of course we both lost a Kathryn/Catherine. Her story began so similarly to mine in diagnosis and condition of the babies.
Please read today’s TTTS Tuesday about two sweet angels and their amazing mother!
Our TTTS Journey
Twin to Twin Transfusion Syndrome, I had never heard of it before this year. But now I am spreading awareness about it and the tragic effects it can have on babies and their families.
Last winter our journey to start a family became reality. We were so excited to become first time parents. It had been 6 years since either side of our families had welcomed a baby. My dad was battling brain cancer and he wanted to become a grandpa again so badly. The timing was wonderful! We were elated but kept it quiet until the ‘magic 12 week’ mark. At 8 weeks I went to my first ultrasound. My husband decided to not come because he’s a little squeamish about things and I myself didn’t know what to expect. He’d have lots of other appointments to come to. I told him, “Don’t worry about it, they won’t tell us anything exciting, just an estimated due date, and we can kind of figure that out.” Famous last words, it still makes me laugh. The ultrasound tech calmly said, “There’s one, and there’s two.” WHAT?!?! 2??? No way, no how! No one on either side of our families has ever had twins. I thought that was the only way twins happened, besides IVF. The tech complimented me on how cool and collected it was. I explained that I didn’t know her and didn’t want to freak out in front of her, and that I thought I was still in shock. I went to the car and called my husband to tell him everything went well and that I’d tell him details when I got home. He happened to be grocery shopping, so I made sure he had picked up beer for himself! When I got home I showed him the ultrasound pictures, to which he replied, “Do they always call it Baby A?” We had separate pictures of them and then one together. We looked at each other in disbelief for quite a while, and over the next few days wrapped our brains around it. Was our spare room big enough for 2 cribs, would my mom still provide daycare if there are 2 of them, how are we going to fit all of their stuff into our cars…? The questions were soon followed by excitement and anticipation. We always wanted 2 kids, we were just getting them at the same time. It was a good deal for me, 1 bout of morning sickness, 1 delivery, one phase of lots and lots of poopy diapers. We could do this!
So on came the morning sickness, sciatica, bad head colds, and the stretching body! Out of the 21 weeks that I carried them I felt relatively good for only 2 or 3 weeks, but feeling like crud was a small price to pay for having 2 babies. At 12 weeks I saw a Perinatologist at our local hospital, only about 10 minutes from our house. I would go there for monthly ultrasounds as they confirmed at that appointment that they were definitely momo-di, like they had suspected from my first ultrasound. I thought like most people twins were either identical or fraternal. What did mono-di mean? We met with a Genetic counselor that day who discussed TTTS with us. What it is, what it looks like, the chances were of being effected by it, and what we could do about it, We were in a good place, close to our hospital, seeing high-risk doctors, and close to Milwaukee, where one of the leading TTTS doctors practiced, and performed the surgery if we needed it. Things seemed to be going well for the most part, my morning sickness was starting to lessen, my belly was growing, and we were able to share our exciting news with people. At 16 weeks we found out we were having girls! At my 19 week appointment the fluid levels were starting to differ to a level that was concerning, I was put on immediate bed rest, while laying on my side and sipping my High Protein Boost. I was now scheduled for weekly ultrasounds, and was really scared. I knew this meant things weren’t ok. I talked with Dr. DeLia from Milwaukee who worked closely with my peri. He seemed pretty calm and collected and emailed me some resources. I knew what I had to do, so I followed his orders diligently. I am a kindergarten teacher and I was missing the last 2 weeks of school, which was emotionally difficult, put I kept my eyes on the prize! The following week at 20 weeks gestation, it looked like my hard work and determination had paid off. The fluid levels were balancing out a bit, bladders could be seen in both babies, dopplers were good, and their size was relatively similar. So I went back home and continued with the same routine. However, this time it was tougher on my emotionally and physically. Emotionally I struggled because I knew I may have to do this for 3 more months, I was missing my favorite time of the school year, and I was unable to go visit my dad whose health was deteriorating. Physically, my hips hurt from laying on my side, my back was starting to hurt, I was having awful rib pain, and I was starting to get heartburn. But I kept my eyes on the prize.
I was excited to go to my 21 week appointment; to get up and take a shower, get out of the house, see my babies, and see why I was so uncomfortable. I had blown up like a balloon. The ultrasound took FOREVER! Baby A was struggling, no measurable fluid, no visible bladder, and stuck down really low. Baby B was swimming in a ton of fluid and they were starting to worry about her heart. My cervix changed as they measure it. I was scared to death. My doctor said I would need to have the laser surgery. I sobbed and sobbed. They took us into another room where we could talk. My doctor contacted Dr. DeLia in Milwaukee, where I’d go for surgery. He wanted an amnio reduction and circlage done before I came to for the surgery. Without those 2 procedures, we would not make it to the surgery. I walked down the hallway to Labor and Delivery. All I could think in my head was, “labor and delivery? I am NOT in labor and we are NOT delivering these babies, it’s just a room where they are doing the amnio reduction.” So that night the amnio reduction was done. Both babies looked good the whole time. As the procedure went on my rib pain started to go away; it was from all of the extra fluid. They removed almost 3 liters of extra fluid! Gross! I was scheduled for a circlage in the morning, and probably surgery in the next few days. I was having some cramping or contractions after the procedure, which I was told is normal because of the amount of fluid that was removed. The uterus needs to adjust. They gave me meds to stop the contractions, but they kept coming, getting more intense and more frequent. They gave me more meds, but nothing was working. Sometime in the middle of the night my water broke. It was Baby A’s.
That’s when I knew we were in real trouble. I knew the first 12 weeks of pregnancy were scary, and having twins at the end was scary. I knew full well that they would probably be in the NICU. I knew they may not come home at the same time, but I never let myself think that they would never come home. I never, ever though we’d be in trouble at 21 weeks! My babies were coming. How do you prepare yourself for that? They were born that afternoon 9 minutes apart. Baby B, Catherine, actually made her appearance first, followed by Baby A, Hattie. They were both born sleeping as labor was too tough on their tiny bodies. They were absolutely beautiful, just so teeny tiny. Catherine was 9 inches long and Hattie was 8.5 inches. They both weighed 10.5 ounces.
The nurses dressed them in adorable matching white dresses with pink hats and wrapped them up in blankets. They were baptized, held by both grandmas and one of their grandpas, and an aunt. We were able to keep them with us for 24 hours; the most rewarding, amazing, sad, and heart wrenching 24 hours of my life! 24 hours I will cherish forever! A few days later they were buried in the cemetery behind the church were we were married, next to my husband’s grandparents.
Now what? I was frozen time. I couldn’t do anything; I wasn’t supposed to be doing anything. I was supposed to be pregnant, I was supposed to be on bed rest, I was supposed to be wearing maternity clothes. I was stuck. I cried harder then I ever knew I could cry; I cried more then I ever knew I could cry. What are you supposed to do? Where’s the guide book? I believe I had a choice, I could stay right were I was, or I could move forward. (I hate the term move on, I’d never move on from this.) I made a goal for myself; Do one thing each day; go visit my dad, cook a meal, work on my baby book for angels, write a thank you; Just 1 thing. Put one foot in front of the other and see where it leads. Little by little I started to be able to do more.
At one point during that first month after losing the girls, I stumbled across a quote. “There is no foot so small that it cannot leave an imprint on this world.” YES!!! That was it! That was my girls! I was madly in love with their amazing, little feet.
Their lives needed to mean something, they needed to be remembered.
Other people needed to know about TTTS! I drew inspiration from other TTTS angel moms that I had connected with on Facebook. Somehow, they had turned their grief into something powerful. They had taken something so sad and made it positive. As I lay in bed one night in tears, it came to me: The Catherine and Hattie Photo Challenge. I wanted people to say and write their names and talk about TTTS. Knowledge is power. The whole world needs to know about my girls and their courageous battle!
I stayed awake for hours thinking of how this could work. My tears turned into a smile. Man, did that smile feel good. I was able to remember my girls with a smile! I was on to something; something that could be big, something that could be powerful. The next morning I sat down on my computer and started typing. It poured out and my thoughts and the words came out perfectly. I posted the challenge to my two TTTS groups on Facebook. Within minutes people from all over the US had responded to the idea. Go little feet, go! Then people from other countries started to respond to the idea. Then I emailed friends and family who knew our story. Within a few days pictures started to come in. Each time I got one, I smiled a big smile (and maybe cried a few tears). My girls were telling the world about TTTS. How cool is that?
I was not at a place where I was able to share our story with all of my Facebook ‘Friends’. I had also decided when I started the Photo Challenge that it would run for a year. For their 1st birthday, on June 8th, 2013. I will pull all of the photos together to put into a book in their memory. 6 months into it I have received around 200 photos from Italy, Australia, Japan, Puerto Rico, England, France, Canada, Hawaii, North Carolina, New York, Georgia, Las Vegas, Wisconsin, and many other places in the USA. Every time I get one I know that someone has thought about Catherine and Hattie, and I can’t describe what a great feeling that is! My girls and their battle with TTTS have changed the world, one picture at a time.
“No foot is so small that it cannot leave an imprint on the world” – literally J
Do you believe in angels? I do! And here’s why…
When our identical twin daughters, Catherine and Hattie, were born sleeping at 21 weeks on June 8, 2012, I was so devastated that I needed to believe in something, anything. They were so tiny and so perfect, simply too beautiful for Earth. There was not a doubt in my mind that they were in Heaven. They were the newest, teeniest, tiniest, most beautiful angels to reach the pearly gates. I had to believe in something; I had to believe they were somewhere if they couldn’t be here with us. So that’s what it was, a belief in something wonderful, a place that was wonderful enough to have my babies.
As I sat at the cemetery preparing for their funeral a little boy from my kindergarten class was undergoing experimental brain surgery. I know teachers aren’t supposed to have favorites, but what can I say, this little boy Giovanni (Gio) is definitely one of my favorites. He suffers from an extremely rare seizure disorder, which causes him to have over 80 seizures a day! The seizures were so sever that they caused him to be non-verbal and on the autism spectrum. But all of that being said, he is an amazing boy with the most beautiful eyes and charming personality to match. Because the seizures had become so bad and his quality of life was dwindling, the decision was made for experimental surgery. That day his family and I talked to my angels all day. They needed to help him get through this; they needed to guide the gentle hands of the surgeons! We needed all of the help we could get for Gio! The surgery seemed to go okay, but now the waiting game began to see what the true outcome was. He would be in the hospital for weeks being closely monitored.
A week after he was released from the hospital I went to his house to watch him for a few hours. He was his quiet charming self, but a bit different. From the first day he walked into my room, I knew that he is a smart and inquisitive guy. He was my first student to know that I was pregnant after all! He used to put his hand on my belly, grunt, and smile at me, as if to say, “I know that you have a secret in there.” He even knew before any of the adults at school knew! But how would he react to me not being pregnant anymore? Would he even notice? How do you explain such a sad thing to him, or do you even try to? I was full of anxiety not knowing what to do, so I didn’t do anything. I walked into his house as he squealed and ran over to me; maybe I’m one of his favorites too. J
Anyway, after I was there for a little while he brought a book over to me and sat on the couch, as if to say, “Hey come and read this book to me!” So we sat there next to each other; I read. He listened. All of the sudden he touched my belly and looked up at me with the most curious brown eyes. I simply said, “Gio, the girls are in Heaven.” His expression turned to confusion. I said, “You know, they’re angels, the ones who were with you during your surgery, the ones who helped you and your doctors.” He gave me the biggest grin I had seen in months, a grin that said, “Oh ya, those girls, that’s who they were. Of course I know they were there with me and they helped me the whole time!” I was speechless! I sat on the couch stunned, fighting back tears, not able to move! Did he really see them? Were they really there helping him?
Well, next came my proof. He reached up and held onto the pendant on my necklace. My mom had bought me a necklace with a pea pod that has two peas in it, just like our identical twin girls. He held it gently and gave me that same amazing smile again. Yup! There was my proof. Angels DO exist! They are there to help us when we need them, to watch over us, and give us strength. Our babies are okay!
Hopefully this story helps you believe too. Heaven does exist and it is filled with little angels!
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