i am resting. we are waiting. it will be 24-48 hours before we get preliminary results from the CVS. those findings will tell us if the baby has: downs, trisomy, trisomy 21 or turners. the rest of the results wont come for 7-10 days.
now, the preliminary results might only test for 4 syndromes, but those 4 syndromes equate to 80% of all chromosomal problems.
1130am
my phone rings. it's sandy, the genetic counselor. she starts with: "i have great news!" the preliminary results are all negative! that is fantastic. she asks if we'd like to know the gender...heck yah! i put her on speakerphone. she tells us that we are having a baby GIRL! we both tear up. ask her a few more questions. hang up. then, embrace for what felt like 10 minutes. we were excited for the "good" news and even more excited about the idea of having a girl. and, a bonus, we already knew her name: Estella Ray.
from this moment on, we could send good thoughts to estella. prayers can be in her name. there is a different level of attachment when you know the gender and have a name.
also, because of our decision to fight, we decided to share our news with more people. we figured that the more people praying for Estella Ray, the better off she will be. we began to send out emails, make phone call, and, if you are reading this, establish a blog.
we want everyone who knows and loves her to stay updated. we want you to share your good/bad stories of similar issues. (personally, i get even more strength through others stories.) please send messages to Estella Ray. she will get strength through those who love her.
thank you for caring. thank you for listening. continue to look back for updates. we are hoping to get the final CVS results next week. pray for negative results, please. if those come back negative, we will be heading down a different "path." but, at least we'll be closer to knowing what we may be able to do to bring Estella Ray into this world.
Saturday, January 29, 2011
January 26, 2011
the last 24 hours were spent online. searching for stories, medical research, anything we could find about CH and edema. there is tons of information about CH, not much about edema. there were positive outcomes about baby's with CH. these stories gave us hope. and, to be honest, gave me the first feelings of strength. i finally realized that i could fight for this baby. if my doctors wouldnt, i would. anthony felt the same way. we came to agreement that we would fight for this baby.
130pm
we go in for the CVS test. there are 2 options for this test; one is needle in the belly (no thank you), the other is vaginally (yes, please). apparently, i would not have a choice. on this particular day, with this particular doctor, i would be having needle in belly. let freaking out begin. i warned him of my fear of needles. he didnt really seem to care. he found the placenta and begin to do set-up. i asked him if he could check and make sure there was still a heartbeat. honestly, i was terrified to know...there, in fact, was a heartbeat. let's continue.
yes, the needle in the belly really sucked. then, they had to give me another shot in the rear end because of my blood type. crappy day. i went home to rest (required for 24 hours following the procedure).
thus begins the wait for preliminary results...
130pm
we go in for the CVS test. there are 2 options for this test; one is needle in the belly (no thank you), the other is vaginally (yes, please). apparently, i would not have a choice. on this particular day, with this particular doctor, i would be having needle in belly. let freaking out begin. i warned him of my fear of needles. he didnt really seem to care. he found the placenta and begin to do set-up. i asked him if he could check and make sure there was still a heartbeat. honestly, i was terrified to know...there, in fact, was a heartbeat. let's continue.
yes, the needle in the belly really sucked. then, they had to give me another shot in the rear end because of my blood type. crappy day. i went home to rest (required for 24 hours following the procedure).
thus begins the wait for preliminary results...
January 25, 2011
i wake up at 3am. i cant sleep. the words NUCHAL TRANSLUCENCY repeat in my mind. i get on the internet and look for every story i can find about thick nuchal translucency. i find as many good as bad. but, if anything, i just have more questions.
we get an appt to see Dr. Fuller at 950am. we stop by the 11th floor to pick up a copy of the report from the night before. in the time it took to go from 11th to the 14th floor, i was able to google a phrase that is on the report: cystic hygroma. before Dr. Fuller enters the room, i read "1% of babies are found to have cystic hygroma and not many survive to term." she enters. the look on her face confirms what i've just read on my phone. all i ask her, "it's not good, is it?" she shakes her head "no." i break down. the next 5 minutes are spent trying to make sense out of what is going on. she explains that it is not our fault. it's completely random. she is sorry. she didnt think this would have any effect on us trying to have another baby. she even stated that maybe "you knew in your heart" because of the fear i'd had in the few months of knowing i was pregnant. she gave us a card and sent us downstairs to the perinatal center to schedule an appt with a genetic counselor.
we walk down the LONG hallway of our dr's office. passing by, what i seemed to think was an abnormal number of healthy, pregnant women. women who had the "glow." here i am, with a pooch, but i am dark. the light has been shut off from my glow. i'd just been told that i'd never meet my baby. they were lucky. i was not.
we went to the 7th floor. i cannot control my emotions. i cannot even speak well enough for the receptionist to understand my name. anthony helps the lady with her questions. another woman comes out to chat with us. she begins to tear up at that site of me. she gets us in that day. we have an appt with a genetic counselor at 1245pm. and, i still really dont understand what this all means...
1245pm
we meet sandy. very kind-hearted, soft-spoken lady. she goes through our family history. nothing to really speak to. we have a healthy 4 year old. hmmmm. so, she gives us a small biology lesson of chromosomes and what i bring, what anthony brings...blah blah blah...we start asking questions. "what are the chances that our baby will survive?" she couldnt give us an answer. heck, i would have been happy with a 5% chance. but, she couldnt give us anything concrete. all she could give us was that our baby had a 50% chance of chromosomal abnormality or a 50% chance of some other birth defect. we ask about the birth defect category. there isnt really an answer for that either. it seems, it's a catch all for anything that may be wrong with the baby. thanks?
next steps were to try and find out about chromosome problems. to do that, i would have a CVS test (pretty much, a early-stage amnio). the answers to this test would tell us if the baby has any chromosomal problem. ok. sign me up.
now, the big question is, if it's not a chromosome problem, how do we find out what the problem is...well, you have to wait. we cannot really take a good look at the baby's heart until 18-19 weeks.
as time went by in our meeting, our counselor notified us that she suspected a heart problem. based on another finding that we'd ignored in the U/S results. apparently, along with a cystic hygroma, our baby had "soft tissue edema." she explained that this was fluid in the baby's chest. in her opinion, this finding was the most devastating part of the finding. great. we have 2 things going against us now. we hadnt researched about edema. we didnt know what questions to ask. so, we walked out of her office with a little more confusion and even more reason to believe that our baby was dying.
we get an appt to see Dr. Fuller at 950am. we stop by the 11th floor to pick up a copy of the report from the night before. in the time it took to go from 11th to the 14th floor, i was able to google a phrase that is on the report: cystic hygroma. before Dr. Fuller enters the room, i read "1% of babies are found to have cystic hygroma and not many survive to term." she enters. the look on her face confirms what i've just read on my phone. all i ask her, "it's not good, is it?" she shakes her head "no." i break down. the next 5 minutes are spent trying to make sense out of what is going on. she explains that it is not our fault. it's completely random. she is sorry. she didnt think this would have any effect on us trying to have another baby. she even stated that maybe "you knew in your heart" because of the fear i'd had in the few months of knowing i was pregnant. she gave us a card and sent us downstairs to the perinatal center to schedule an appt with a genetic counselor.
we walk down the LONG hallway of our dr's office. passing by, what i seemed to think was an abnormal number of healthy, pregnant women. women who had the "glow." here i am, with a pooch, but i am dark. the light has been shut off from my glow. i'd just been told that i'd never meet my baby. they were lucky. i was not.
we went to the 7th floor. i cannot control my emotions. i cannot even speak well enough for the receptionist to understand my name. anthony helps the lady with her questions. another woman comes out to chat with us. she begins to tear up at that site of me. she gets us in that day. we have an appt with a genetic counselor at 1245pm. and, i still really dont understand what this all means...
1245pm
we meet sandy. very kind-hearted, soft-spoken lady. she goes through our family history. nothing to really speak to. we have a healthy 4 year old. hmmmm. so, she gives us a small biology lesson of chromosomes and what i bring, what anthony brings...blah blah blah...we start asking questions. "what are the chances that our baby will survive?" she couldnt give us an answer. heck, i would have been happy with a 5% chance. but, she couldnt give us anything concrete. all she could give us was that our baby had a 50% chance of chromosomal abnormality or a 50% chance of some other birth defect. we ask about the birth defect category. there isnt really an answer for that either. it seems, it's a catch all for anything that may be wrong with the baby. thanks?
next steps were to try and find out about chromosome problems. to do that, i would have a CVS test (pretty much, a early-stage amnio). the answers to this test would tell us if the baby has any chromosomal problem. ok. sign me up.
now, the big question is, if it's not a chromosome problem, how do we find out what the problem is...well, you have to wait. we cannot really take a good look at the baby's heart until 18-19 weeks.
as time went by in our meeting, our counselor notified us that she suspected a heart problem. based on another finding that we'd ignored in the U/S results. apparently, along with a cystic hygroma, our baby had "soft tissue edema." she explained that this was fluid in the baby's chest. in her opinion, this finding was the most devastating part of the finding. great. we have 2 things going against us now. we hadnt researched about edema. we didnt know what questions to ask. so, we walked out of her office with a little more confusion and even more reason to believe that our baby was dying.
January 24, 2011
the day is finally hear! we havent seen our baby is so long! we know, based on the babycenter.com updates that we will see a semblance of a person. the hours are going by SO SLOW at work...finally, it's time. anthony's downstairs. we get to see our baby!
at this point, i am at 10.5 weeks. the earliest you can go into this screening. being the impatient person i am, i had to schedule the appt at the first available date. seeing the baby just brings me such joy.
we head into the U/S room. i ask the tech if she will be able to tell us if she sees any problems. she lets us know that the radiologist will come in after the scan and discuss his findings either way. she scans for about 20 minutes. she points out hands, arms, feet, toes, etc. all the good stuff. she taking measurement, but we aren't really paying attention. we are just watching the baby. basking in the glow of the new addition to our family. wondering the babies gender. how big/small he/she will be when they come out, etc.
the tech leaves for 5 minutes and returns with the radiologist. the first words out of his mouth, "congratulations!" yes, it feels good. but, the next 5 minutes of words will forever change our outlook on the pregnancy. the hopes for our future family. the idea that we might not have a healthy baby.
he explains that the nuchal translucency is measuring thick. and, this is a signal that something is wrong with the baby. that the baby is at high risk for a birth defect. honestly, after those words, everything else was kinda white noise. he just kept talking about having to "go down a different path." using hand gestures of pathways. it really did feel like a dream state. the only thing i could ask was "what is the measurement and what is a normal range?"
so, we walked out of the scan knowing that a normal range is 1-2mm and our baby had a measurement of 3.7mm. not really knowing what this really meant, it just didnt seem good.
i looked to a friend who had a similar experience for more information. she helped guide me through understanding the stats that she'd been given and what all of this means (or could mean) to us and our baby. based on more information, we had reason to believe that this reading could be a false-positive. that, having this screen done before 11.5 weeks could be too early. there was hope! we went to bed feeling terrified, but thinking this could all be a nightmare that could end very soon.
8-10 weeks
in the coming days, life was good. not much nausea. just tired. i'd come home. put on pjs. settle into the pillows and the chair. anthony would cook. we'd eat. we'd go to bed. it was a ritual.
we talked about the baby very little. again, we were very excited, but were realistic that we were in the "scary zone." we used most of baby-talk time to chat with ely about "hypothetically" having a brother or sister. ely was EXTREMELY clear to us. he ONLY wanted a sister. and, her name would be "baby ruby" (my BF daughters name). we brought him around friends who had new babies. we thought all of these experiences would be helpful for our future. we had not planned on telling ely until we got to 12 weeks and had the final "thumbs up" that our baby was doing well. it's really hard to keep exciting news from him. but, we did.
POP! we took a picture at 8 weeks (see pic). my tummy looked pretty normal. (of course, not flat. but, then again, my tummy hasnt been flat since i was in college.) within days of taking the 8-week photo...POP! my tummy popped. WHAT? WAIT! this is way too early. i wasnt planning on telling work for 3-4 more weeks! how would i hide this pooch??? maternity clothes already? i compared my tummy size to the blog i had created when i was pregnant with ely. WHOA...i was the same size at 9 weeks as i was at 5 months with ely. ARGH! i refused to take a picture until i was 12 weeks. that would make it seem a little more normal, right?
the time is so slow...we get to see our baby again on 1/24/11. 1st trimester screening (U/S). we were on pins/needles!
January 7, 2011
at this point, i am 8 weeks pregnant. over the last 4 days, i had severe morning sickness. ICK! very similar to my sickness when i was pregnant with ely. (that last from week 7-15!) but, all the sudden it stopped. no nausea. no lightheaded feelings. not nearly as tired. boobs were not sore. what was going on??? i began to freak out. i had been so worried about miscarriage since the day we found out...was this a sign? i thought, surely not. there would be cramps. bleeding. so, what does anyone do in this day/age...head to the internet. i felt assured that information on the web would help me relax. there is no way that losing symptoms is a sign of miscarriage, right? well, apparently, it can be. i found tons of stories of women who know longer "felt" pregnant. and, within weeks, found out their baby did pass away in utero. sometimes the body just doesnt know how to pass the baby. introducing, freak out phase 2. i called my doc's nurse in a panic. crying. but, also feeling really stupid. she was so kind and understanding. she squeezed me in that day. she said, "let's just take a look and see how the baby is doing." i was so thankful and fearful at the same time.
a few hours later and walked into my doc's office. this time, head down. terrified. Dr. Fuller asked me some questions and immediately brought me into the U/S room. i had a wad of kleenex and a pounding heart. LUCKILY, so did our baby. baby was fine. measured at 8 weeks. heart was racing. whew. again, i was able to walk out, head held high. heart filled with love and hopes for the future.
Name(s) discussion
well, we didnt need to discuss girls names. that had been decided even before ely was born. when we were pregnant with ely, we had boy and girl names chosen. obviously, ely took the boy name. but, we always had held estella in our heart if we ever had a girl. estella is honor of my maternal grandmother. her name was estelle. toward the end of granny's time with us, i had told her if i ever had a girl, i would honor her with her name. this was way before i'd even met anthony. thank goodness he like this version of estelle :).
as for the middle name, that did adjust a little bit from our name option 5 years ago. we conceived this baby within days of a tragic loss in my family. my stepdad, alan ray huls (AKA: cowboy) unexpectedly passed away. this was a horrible loss and left us devastated. alan had always treated me as his own daughter. he loved me unconditionally. he taught me kindness. he taught me how to be self-deprecating. he made me laugh every time i spoke to him. he was a guidepost for me. i wouldnt be who i am today, without him. knowing we were "trying" around the time he passed away, we immediately agreed that we'd honor alan in some way. knowing that if we conceived during this time, alan's spirit would live within this child. so, with the first name of estella, we decided to use alan's middle name for a baby girls middle name...so, if we had a girl, her name would be Estella Ray. we thought is was perfect!
as for a boys name, the struggles continued. we talked a lot about options for boys names. after weeks of discussion, we tabled it. we knew it would be MONTHS before we'd even find out the gender. so, we decided to wait it out.
as for the middle name, that did adjust a little bit from our name option 5 years ago. we conceived this baby within days of a tragic loss in my family. my stepdad, alan ray huls (AKA: cowboy) unexpectedly passed away. this was a horrible loss and left us devastated. alan had always treated me as his own daughter. he loved me unconditionally. he taught me kindness. he taught me how to be self-deprecating. he made me laugh every time i spoke to him. he was a guidepost for me. i wouldnt be who i am today, without him. knowing we were "trying" around the time he passed away, we immediately agreed that we'd honor alan in some way. knowing that if we conceived during this time, alan's spirit would live within this child. so, with the first name of estella, we decided to use alan's middle name for a baby girls middle name...so, if we had a girl, her name would be Estella Ray. we thought is was perfect!
as for a boys name, the struggles continued. we talked a lot about options for boys names. after weeks of discussion, we tabled it. we knew it would be MONTHS before we'd even find out the gender. so, we decided to wait it out.
December 27, 2010
the day we'd been waiting for...the day to see our baby. anxious and excited, we entered the waiting room. unfortunately, my OB/GYN for the last 13 years had moved to Indiana. so, not only were we meeting our new baby for the first time, but we were meeting our new doctor.
immediately, we felt comfort with Dr. Fuller. whew...she was patient with all of our questions. amazing how much you can forget in 5 years! after a 30 minuted Q&A session, we went to the Ultrasound (U/S) room to see our baby. there he/she was. tiny. unrecognizable. a blob, really. but, we could see a heartbeat! that was amazing. at only 6.5 weeks gestation, seeing a heartbeat is not a given. (see pictures)
anthony and i walked out of the office glowing. heads held high. feeling on top of the world. (honestly, we'd not discussed the baby a lot. we knew that anything could happen. we wanted to see him/her before we got our hopes up.) now, the baby was confirmed. we could finally talk about him/her. as we got into the car, anthony said, "can we talk about names?" we felt like we could talk about the future. that felt amazing.
December 12, 2010
after months of bad news and hard times in our household, we found out we were expecting. this time, it was a little more planned. we had just started trying, and were surprised how quickly we conceived (again). we felt very blessed and were excited of the news. of course, it was really early in the process (about 4 weeks). so, we cautiously celebrated. we scheduled our first OB appt for 12/27/10. waiting weeks to see our baby was slight torture. but, we knew he/she would be worth the wait.
this was what our family needed. we ALL needed something positive to look forward to. we needed hope. a new baby would bring love and strength to us all.
this was what our family needed. we ALL needed something positive to look forward to. we needed hope. a new baby would bring love and strength to us all.
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