From July 27th
"Dear Family and Friends,
Today marks one month since we went to USC for surgery to try to save both our babies from TTTS. Although this month has felt like an eternity and time has seemed to stand still for us, we are excited to report that our survivor twin, who we have named Quinton Ellis (Ellis was my maternal great grandmother's name), is making a real strong comeback! 30 days marks a big milestone for us, because if most survivors of TTTS make it to this point, they have a much better prognosis moving ahead.
Yesterday we were seen by specialists at Rady’s Children’s Hospital for a Fetal echocardiography which is an ultrasound test done during pregnancy to evaluate the heart of the unborn baby. Echocardiography assesses the heart's structures and function. Given the trauma that had occurred to him while supporting his brother and the surgery, our team of doctors wanted to make sure that Quinton’s heart was indeed healing and functioning properly. The TTTS had put a huge strain on his heart and the perinatologist had noticed some abnormalities in our previous visits, hence the EKG. After another excruciatingly long 3-hour appointment and scan, the doctor pulled us into her office to consult. We were of course on pins and needles with high anxiety again, these appointments never seem to get easier now. Yet, she smiled and gave us the great news that his heart had recovered and she saw no issues and had no concerns! Yay! Finally some really good news and some really happy tears for once!
We are 24 weeks this week and Quinton has also reached 1 whole pound! He is still quite small but he is kicking me every day to remind me he is growing and thriving despite it all. I was advised to eat like a WWE wrestler so I am doing my best! The doctors have to monitor us each week for possible cord entanglement with his brother, but so far so good and no need for me to be on hospitalized bed rest yet.
So obviously we are celebrating with this victory and we feel so grateful to have made it this far. And at the same time, it is still a struggle each day as we continue to grapple with the loss of our other son, who we named, Jude Angelo. We loved the name Jude from the Beatles infamous, Hey Jude, and the lyrics/backstory fit perfectly. Angelo is from my maternal grandfather's side of the family, it clearly means angel in Italian; Jude is our little angel.
I just can’t help but want to educate myself on this syndrome and the road that lies ahead for us. This is a really touching article with circumstances so similar to ours. Feel free to read if you like:
http://www.news.com.au/lifestyle/parenting/javier-abela-still-thinks-of-his-twin-brother-he-lost-in-the-womb-to-rare-twintotwin-transfusion-syndrome/news-story/1bd6341fe95bf4435044c3c5d56526c9
Masayon does not yet know of the twin, Jude. He knows that Quinton has been sick and is healing, so mommy has to rest a lot, not an easy concept for a busy 5-year-old to comprehend. Mommy is a little "boring" these days but he is so sweet to us with lots of love and hugs. He likes to tell Quinton about skateboarding tricks and how he will teach him someday. We have spoken to many professionals, counselors and our pediatrician who have all advised us that he is not developmentally ready for us to explain this circumstance to him; his brain is not there yet. So we ask kindly that if you see Masayon that you please don't mention the loss or twin for now. He has been pretty scared these days after all the hospital and doctors visits, as well as seeing his parents cope and we all know kids feel everything. Someday we will share with him about both of his brothers, as they will always be our sons. But for now, we want to keep that private for us so we can handle it properly for our circumstances; it's just a personal choice.
One way we have honored Jude, was going on a family beach walk one morning to find a special rock for him. Thank you to my dad for bringing this beach rock from San Diego all the way to the high sierra mountains of California (representing how important the ocean and mountains are to our family) on his annual backpack trip, so that Jude will have a beautiful and peaceful place to be; he has quite the view! Photos attached.
Thank you to both of my parents and Mark’s parents for giving Masayon stability and love in a really challenging time. Thank you to all of our amazing friends and family for the love and support you have provided us; we would not be able to get through this without our support system. We will continue to try to keep you posted so thank you for all your continued love, thoughts and prayers.
With love,
Mark and Abs"
