August 1st is already a special day, and this Friday it’s going to be even more special. On the 2 year anniversary of my twins coming home from the hospital, we will be meeting the people that helped save my babies lives, and other fighters/survivors/heroes/strongest people in the world, like my boys.
As many of you know, my twins spent 91 and 93 days in the Neonatal Intensive Care Unit (NICU) of St. Joseph’s Hospital, after being born at 25 weeks, 5 days. You can read the full story of my pregnancy and their birth right here, but just to catch you up, they were born prematurely because of Twin to Twin Transfusion Syndrome (TTTS) and Selective Intrauterine Growth Restriction (SIUGR.) Both are conditions of the placenta, where one twin gets too much of the placenta, and one doesn’t get enough. When the babies were born, one weighed 1 lb 7 oz and the other, 2 lbs 2 oz.
This year we’ll be celebrating their NICUversary in Twinsburg, Ohio with the TTTS Foundation at Twins Days. The founder of the TTTS Foundation, Mary, lost one of her twin boys to the Syndrome, and started the Foundation in their honor. She was one of the first people I spoke to when I found out I was having twins. This is their 25th anniversary.
The Foundation, and Mary especially, works tirelessly to educate mothers and doctors about TTTS, and the importance of constant monitoring during a twin pregnancy. She also connects people to great doctors, like mine, Dr. Julian De Lia.
Since I am the consummate worry wart, as soon as I found out I was having twins, I started doing research on any and every complication. With a stroke of luck, the first website I came across was Mary’s. To add to that the luck, the leading expert on TTTS, Dr. Julian De Lia, is based out of my hometown of Milwaukee, WI. Mary and my Obstetrician got me in touch with him as soon as I found out I was having Identical (Mono/Di twins,) or twins that share a placenta. For this kind of pregnancy, monitoring is key.
(photo from twinpossible.com)
What is monitoring? For a twin pregnancy where the babies share a placenta, this means weekly or biweekly ultrasounds and blood flow readings. TTTS can move quickly, so doctors need to measure the size of the babies, the size difference of their sacks, and the way the blood is flowing from the placenta to them. These are just the bare minimum facts, so if you, or someone you know is expecting identical twins, please visit the TTTS Foundation for more information.
While I wish my babies wouldn’t have had any of the complications or hardships they endured, I am forever thankful for the people I met because of them….and a whole bunch of them are going to be at Twins Days this weekend.
Mary has a booth every year to promote awareness of TTTS, and since it’s the 25th anniversary, there’s going to be a celebration. Many of the women and men I’ve met through support groups will also be there. Dr. De Lia is joining us! We’re having a dinner, and even marching in the Twin’s parade.
To say I am excited, is a huge understatement. I will be meeting people that supported me through my pregnancy, our hospital stay, and through every other crazy “twin” or “preemie” thing that has happened since. I’m sure there will be lots of tears, hugs, and pictures…and I will share everything with you when we get back!