as a mother, i want nothing but the very best for my children. i'm not sure i know a mother who doesn't feel like that. we want our kids to grow healthy and happy and have every chance at every opportunity in life. we want their lives to be better than our own and try our hardest to make sure that happens. so when circumstances sort of spiral out of control and we can't fix things, like they have for me, lately, what's a mama to do. to feel. to respond.
i received a call from the genetic counselor at our perinatal clinic last tuesday. she left a message simply saying she had the results of our verified test and to give her a call at the clinic, or if she wasn't there, she left her cell number...yeah, not a great sign. when we received the positive news regarding the trisomies 13, 18 and 21 the nurse who called told me the results in a voice message. seeing as how this was not a nurse calling, but the genetic counselor, i knew. so i called her back and she confirmed my suspicions. our daughter has turner syndrome. after i got off the phone with her, i sat at our dining room table for a few minutes staring at the wall, trying to absorb this information. i knew jeff was on his way home, so i sent him a quick text saying i had news, but wanted to tell him in person. and then the tears came. a few minutes later jeff came flying through the door searching my face for an answer. all i could manage to blurt out was 'she has turner syndrome,' and the lump in my throat took over and i couldn't do anything but sit and weep.
from last tuesday until yesterday afternoon i was a hot mess. anxiety set in once again and i couldn't bring myself to buy my sweet little girl anything more. no clothes, no blankets, nothing. i couldn't allow myself to get any more attached than i already was. i wanted to protect myself the only way i knew how from the worst possible scenario. i had already pictured her in the outfits we've bought and it was like a knife in my heart to think she may never wear those. i knew from the reading i had done that the majority of turner syndrome girls have heart defects, and what's more is the majority don't make it to term. there's also the physical drawbacks and i was grieving those possibilities as well.
yesterday afternoon we had another ultrasound. i wasn't as nervous or anxious before this one as i had been in the past, and i'm not entirely sure why, other than maybe i was expecting the worst. it was kind of a big deal seeing as they were doing a fetal echocardiogram...taking a detailed look at her heart to check for any defects.
i sat on the table as the tech squirted the warm jelly onto my stomach, staring at the t.v. screen in front of me. i wanted to see her. badly. i wanted to see her heart beating, to see her wiggling around doing her dance routine. i longed to see her little face. and she did not disappoint. she is the stinking cutest little girl i have ever seen in my life. ever. her profile is beautiful. her legs are perfect. her feet are needing some attention from my lips. i am completely smitten with her. yes, she still has the hygroma, and yes there is some fluid around her skull. but her heart is in perfect condition. perfect. condition. there is no fluid internally, either, which is amazing. she seems to be a perfectly healthy sweet little babe, aside from her diagnosis. enter big sigh of relief.
when our tech was done she left to show the results to the doctor. a few minutes later doctor mandsager, our tech, and two students (what?) walked through the door to do another scan and talk about the results. wasn't expecting to see students, but it makes sense seeing as how we're a pretty rare case in pregnancy world. doctor mandsager told us that her heart seemed to be just fine. we're not out of the woods yet, but he is reasonably optimistic for a good outcome. meaning, baby girl has a better chance (70-80%) of making it than not. enter second big sigh of relief. we need to continue to monitor the fluid around her skull and the hygroma, but both jeff and i could tell a big difference in his attitude -more positive- since our last ultrasound...which was only three weeks prior. we talked a little about turner syndrome and what that typically looks like. unfortunately our little girl will not be able to have children biologically and that hurts both jeff and i. yes, there's always adoption, and maybe that's where god will lead her. but the fact still sucks. she will be shorter than most, although i've done some reading suggesting to start a growth hormone around the age of four, and by doing so she'd have a pretty good chance at attaining an average height. if we didn't do that, she could very well be four and a half feet tall. and then around the age of thirteen she would start estrogen. this is all very case based, so it may look different once she's finally here, but it gives us an idea. and at our next appointment we will talk with the genetic counselor who will most likely be able to give us more information and answers....i hope.
after leaving the clinic, jeff and i went to have some lunch and all i could think about is how happy i was. i finally felt she was going to be okay. tears pooled my eyes as i ate and looked at her photo. we talked about how much it hurts us she won't have her own children (biologically), but how thankful we are she is a fighter. i also mentioned how wonderful it will be to tell her someday that she was very sick and the odds were against her, but god performed a miracle, and she is here for a reason.
needless to say, since the very beginning of this pregnancy...well, i guess since our first prenatal appointment, there has been every emotion invented running around in my head. i have felt every single one of them. my poor family. but more on that in another post.
thanks for checking in on us. i'll leave you with a couple photos.
i received a call from the genetic counselor at our perinatal clinic last tuesday. she left a message simply saying she had the results of our verified test and to give her a call at the clinic, or if she wasn't there, she left her cell number...yeah, not a great sign. when we received the positive news regarding the trisomies 13, 18 and 21 the nurse who called told me the results in a voice message. seeing as how this was not a nurse calling, but the genetic counselor, i knew. so i called her back and she confirmed my suspicions. our daughter has turner syndrome. after i got off the phone with her, i sat at our dining room table for a few minutes staring at the wall, trying to absorb this information. i knew jeff was on his way home, so i sent him a quick text saying i had news, but wanted to tell him in person. and then the tears came. a few minutes later jeff came flying through the door searching my face for an answer. all i could manage to blurt out was 'she has turner syndrome,' and the lump in my throat took over and i couldn't do anything but sit and weep.
from last tuesday until yesterday afternoon i was a hot mess. anxiety set in once again and i couldn't bring myself to buy my sweet little girl anything more. no clothes, no blankets, nothing. i couldn't allow myself to get any more attached than i already was. i wanted to protect myself the only way i knew how from the worst possible scenario. i had already pictured her in the outfits we've bought and it was like a knife in my heart to think she may never wear those. i knew from the reading i had done that the majority of turner syndrome girls have heart defects, and what's more is the majority don't make it to term. there's also the physical drawbacks and i was grieving those possibilities as well.
yesterday afternoon we had another ultrasound. i wasn't as nervous or anxious before this one as i had been in the past, and i'm not entirely sure why, other than maybe i was expecting the worst. it was kind of a big deal seeing as they were doing a fetal echocardiogram...taking a detailed look at her heart to check for any defects.
i sat on the table as the tech squirted the warm jelly onto my stomach, staring at the t.v. screen in front of me. i wanted to see her. badly. i wanted to see her heart beating, to see her wiggling around doing her dance routine. i longed to see her little face. and she did not disappoint. she is the stinking cutest little girl i have ever seen in my life. ever. her profile is beautiful. her legs are perfect. her feet are needing some attention from my lips. i am completely smitten with her. yes, she still has the hygroma, and yes there is some fluid around her skull. but her heart is in perfect condition. perfect. condition. there is no fluid internally, either, which is amazing. she seems to be a perfectly healthy sweet little babe, aside from her diagnosis. enter big sigh of relief.
when our tech was done she left to show the results to the doctor. a few minutes later doctor mandsager, our tech, and two students (what?) walked through the door to do another scan and talk about the results. wasn't expecting to see students, but it makes sense seeing as how we're a pretty rare case in pregnancy world. doctor mandsager told us that her heart seemed to be just fine. we're not out of the woods yet, but he is reasonably optimistic for a good outcome. meaning, baby girl has a better chance (70-80%) of making it than not. enter second big sigh of relief. we need to continue to monitor the fluid around her skull and the hygroma, but both jeff and i could tell a big difference in his attitude -more positive- since our last ultrasound...which was only three weeks prior. we talked a little about turner syndrome and what that typically looks like. unfortunately our little girl will not be able to have children biologically and that hurts both jeff and i. yes, there's always adoption, and maybe that's where god will lead her. but the fact still sucks. she will be shorter than most, although i've done some reading suggesting to start a growth hormone around the age of four, and by doing so she'd have a pretty good chance at attaining an average height. if we didn't do that, she could very well be four and a half feet tall. and then around the age of thirteen she would start estrogen. this is all very case based, so it may look different once she's finally here, but it gives us an idea. and at our next appointment we will talk with the genetic counselor who will most likely be able to give us more information and answers....i hope.
after leaving the clinic, jeff and i went to have some lunch and all i could think about is how happy i was. i finally felt she was going to be okay. tears pooled my eyes as i ate and looked at her photo. we talked about how much it hurts us she won't have her own children (biologically), but how thankful we are she is a fighter. i also mentioned how wonderful it will be to tell her someday that she was very sick and the odds were against her, but god performed a miracle, and she is here for a reason.
needless to say, since the very beginning of this pregnancy...well, i guess since our first prenatal appointment, there has been every emotion invented running around in my head. i have felt every single one of them. my poor family. but more on that in another post.
thanks for checking in on us. i'll leave you with a couple photos.
21 weeks
