i had been anxiously awaiting our appointment since it was scheduled. i called three days in a row and then once more to see if we could get in earlier than the original date given to us. luckily, after day two of checking there had been an opening for a whole week earlier. enter august twenty second, two thousand twelve.
the morning passed by incredibly slow on wednesday. i found myself counting down the hours and not exactly on top of my mom-game. finally the time came to leave. good thing we were late because so was the clinic. after filling all the paperwork out we waited another 25 minutes before the ultrasound. once we got settled into the ultrasound room, the tech got to work. it was clear to me as soon as we could see our sweet baby on the screen that the cystic hygroma was enormous. it appeared to be the same size as baby's head. i don't know if it was really that big, but goodness, it had definitely not gotten smaller. the fluid around baby's body was also still there. that's called hydrops. essentially it's edema and it could be occurring anywhere in baby's body. in the liver, heart, pancreas, lungs etc. i expressed my shock at the size of the hygroma and asked the tech if she thought it was huge as well, to which she replied, "it's pretty big." she finished up doing what she needed to and went to get the dr. hwang (who was amazingly gentle and sweet). he came in and looked at the baby himself on the ultrasound machine. we learned from him that the cystic hygroma is septated, which means that there are pockets within it. this means the increase for chromosomal error goes up by 70 percent. dr. hwang also said two things that ring in our ears every day: "your baby is sick" and "this is very concerning." i think jeff and i were in such shock that it was still there we forgot most of our questions for him, and believe me, we have a bajillion of them. we talked a bit about an amniocentesis or a cvs as possibilities for discovering chromosome anomalies, and i had prepared for maybe having an amnio done, but he would have wanted to do a cvs since i was too early for the other. i hadn't done much researching on a cvs procedure and what is all involved, but i knew it was just as invasive as an amniocentesis. i was feeling anxious about it all until dr. hwang told us about a brand spanking new way of going about getting the same results as the other two options. neither jeff nor i can remember what it's called, but all they had to do was take my blood and they can somehow figure out baby's chromosomes and any errors. a blessing from god right there.
after concluding with dr. hwang, having the overall feeling of 'this is not going to turn out well,' we headed into a room to have my blood drawn and then we were able to head home. another ultrasound and fetal echocardiogram are scheduled in a month, and in two weeks i head to mcfarland clinic for a routine appointment- but mainly to see if baby's heart is still beating. i'll be seen every two weeks, with an ultrasound done every month until one of two things happen. either i make it to term and have this baby or i don't. we are trying to prepare for the latter...if you can even prepare for something like that.
i don't mean to sound morbid or pessimistic or as though i don't think god can perform a miracle, but this is a borderline severe case, according to our doctor. hydrops alone carries the risk of miscarriage between 60-90%. this baby could easily go into heart failure from trying to feed the fluid around it's body and the hygroma on top of supplying enough to each organ for normal growth. the odds are stacked up against our little peanut. a septated cystic hygroma only happens in about 1 in 285. that's
less than one percent. we already know from the cystic hygroma that baby's lymphatic system has an error in it, otherwise fluid would not be backing up. we're not sure how baby's heart is holding up at this point, but it was strong at our appointment.
i'm sure you are wondering how i'm doing. heart broken, distracted, and constant worrying are all a part of daily life. i've done plenty of crying and continue to have my moments from time to time. it's a difficult task grieving this news and keeping life normal for our boys. simply put, life is overwhelming. it's hard to find motivation to do simple household tasks. the rest of this pregnancy, however long it lasts, will go by much slower. anticipating every appointment, hoping and praying for a heart to keep beating. for our baby to keep fighting. we appreciate all of you who continue to lift us up in prayer.
