If you are new this week... Welcome! Please introduce yourself. How far along are you? 14 weeks as of today 3/4/17
How are you doing? (Mentally, physically...) mentally worried because I haven't been to the doc in almost a month so I wanna know that our baby is doing ok. I had a pain near my right Ovary last night it literally took my breath away. I'm hoping that it's just my ligaments and etc stretching I was laughing when this happend.
When is your next appointment? March 16th !
Rant/Rave/Questions? nope
GTKY: What kind of music do you normally listen to? Do you have a favorite band, artist, or song? I listen to everything ( no, really) I have everything from Bluegrass folk, classic rock , hip hop, country etc
@jmn1985 have you ever had sleep paralysis before seeing as you've had night terrors? I've had it twice and it was seriously some scary sh*t!! Basic gist, you wake up but your body doesn't. So you are totally still dreaming and your eyes are open so you're aware that you're in your bed but you can't F'ING move! People often think they have ghosts or demons mistakingly because it's often reported that it feels like someone is sitting on you and pinning you to the bed!! I was sooo freaked! I felt like a man was sitting on my and I could hear AND smell a leather belt...like it was being undone. I felt like if I didn't move my extremities I was going to be attacked. Finally was. Me to move and then I couldn't sleep for a week because I thought my apartment was haunted lmao. Soooo if that happens to any of you ever...know there's nothing creepy in your house and that it's an actual sleep condition. Scary as all get out though...
@Texafornian my mom has that! She woke up once in the couch saying "there's a snake on my leg!" She was dreaming Steve Irwin and his wife were throwing snakes on her but she was having an episode of sleep paralysis and couldn't move or wake up! She did stuff like that all the time! It was scary at first but then it was just like "oh someone needs to go shake mom" lol
Hi ladies! I did a quick search for this, but since I'm behind everyone in the group I thought I would just go ahead and ask.
When did you start noticing some of your symptoms taper off?
I was 10 weeks on Friday and ever since then my nausea hasn't been as bad. I know the placenta starts taking over and I won't feel as much, but I just wanted to see what everyone else's experience has been. Also, my PGAL brain is going into overdrive.
@cmar1006 although I still had some nausea after week 10, it definitely started tapering off week 10... I even saw that I made a note about it that week. I'll be 14 weeks tomorrow and my nausea was definitely at its worst weeks 7-9.
I know everyone is different, but I hope that helps!
@cmar1006 mine started tapering off during week 9, which caused me a lot of worry (pgal brain), but we had our NT scan on Friday (12w4d) and everything looks good
@jena333 awesome! I still have 2 weeks until my NT & OB appt. With twins I am constantly worried about "vanishing twin" or some other crazy thing happening.
At least my extreme fatigue and headaches are still hanging around to let me know something's going on in there.
@cmar1006 Mine started getting better around week 11, but only in the sense that I would have some good days.. some days were still awful. Those good days always worried me, though.
I'm 13+3 and it is a lot better, but I still have my moments.... not feeling cocky enough to stop the Unisom/B6 every night, lol.
Having a rough mental day for some reason today...a lot of anxiety around the pregnancy for no apparent reason - I think it's because I've started to allow myself slip into enjoying the pregnancy finally and I'm afraid it still may end badly
on the upside DH &I went to a babies r us registry event yesterday and won a diaper genie in a raffle
Me: 36 years old DH: 42 years old
Married: 05.2012 TW:
TTC #1 Since April 2016 HSG/FSH/AMH/E2/SA all normal DX: unexplained IF spontaneous BFP 01/01/2017- Alexander was born sleeping 04/13/2017 at 19w1d ic/chorio September 2017 HSG #2 & Gonal-F/Femara/Ovidrel/IUI #1 = ep (Salpingectomy of left fallopian tube) spontaneous BFP 01/02/2018 EDD Aug 30th It's a GIRL! Cerclage placed on 03/02 Cerclage removal 08/02
Had a dream last night that my water broke and I went into labor way too early at 12 weeks, it freaked me out, I thought I'd feel somewhat sager by this point.
@harleyquinn0621 sorry you are having anxiety, it feels like once you start feeling good it sneaks up on you. But is exciting that you won a diaper genie.
@heatherwilson321 I am sorry about your nightmare. The really vivid dreams suck when they are loss related. I had two last week. I hope that you have happy dreams
@harleyquinn0621 yay on the diaper genie and boo for the anxiety...hang in there!
@heatherwilson321 sorry too about your nightmare...they're scary. I'm right there with you...I keep waking up after dreams about getting a phone call about my genetics results or I'm telling someone about losing the baby, etc. wish just once I'd dream that all turned out ok! Hugs mama.
@Sugargirl1019 old wives tale is that you dream the opposite of what you're having. It was true for me both times! With DS I dreamed we were there and the ultrasound tech threw confetti and balloons at us and said "it's a girl" and with this one (girl) I had a dream that my brother threw us a gender reveal party and they all said "it's a girl" but in my dream I knew we didn't have the verifi results back and we got them back and it said boy lol!
@heatherwilson321@sugargirl1019Ugh... stupid dreams! My husband likes to remind me often that you usually dream the opposite of reality. I have no idea where he got that statistic, lol, but my mom told me the same thing last week, so I'm just going with it. Pretty sure they are only telling me that because I keep dreaming the baby is a boy and they both think its a girl, but in your cases... super healthy babies!!!
@Sugargirl1019 old wives tale is that you dream the opposite of what you're having. It was true for me both times! With DS I dreamed we were there and the ultrasound tech threw confetti and balloons at us and said "it's a girl" and with this one (girl) I had a dream that my brother threw us a gender reveal party and they all said "it's a girl" but in my dream I knew we didn't have the verifi results back and we got them back and it said boy lol!
haha, this wasn't posted when I submitted my post.
@sugargirl1019 I'm sorry you received those results. Usually children with trisomy 18 are girls so I'd have to agree with PP that you dream the opposite of reality. Do you have the next step(s) planned for confirming or denying the NIPT results?
@sugargirl1019 I'm sorry you received those results. Usually children with trisomy 18 are girls so I'd have to agree with PP that you dream the opposite of reality. Do you have the next step(s) planned for confirming or denying the NIPT results?
I think she meant in her dream she was positive for trisomy 18. @Sugargirl1019 was I mistaken?
@sugargirl1019 I'm sorry you received those results. Usually children with trisomy 18 are girls so I'd have to agree with PP that you dream the opposite of reality. Do you have the next step(s) planned for confirming or denying the NIPT results?
I think she meant in her dream she was positive for trisomy 18. @Sugargirl1019 was I mistaken?
@sugargirl1019 I'm sorry you received those results. Usually children with trisomy 18 are girls so I'd have to agree with PP that you dream the opposite of reality. Do you have the next step(s) planned for confirming or denying the NIPT results?
I think she meant in her dream she was positive for trisomy 18. @Sugargirl1019 was I mistaken?
Just a dream!! I do not have my results back!!!
But you're right now that I think of it. Trisomy 18 IS girls.. weird. I had a cousin born with trisomy 18. Maybe that's why I'm so nervous. And I have a cousin with down syndrome.
ETA: I am LOVING hearing that you dream the opposite! I'd love a little girl! I think my body is trying to adjust to the idea of a boy, just in case? I knew my first was a boy and I was thrilled the whole time. My second, I knew was a girl. Idk why I'm feeling so one-sided this time around excitement-wise!
Me: 27 years old DH: 27 years old Type 1 Diabetes since 2001, MTHFR hetero A1298T Dogs: Raider 4 yrs, Dex 4 yrs
Married in July 2014
TTC #1 since late Feb 2016
BFP #1 3/29/16 MMC: 5/5/16 BFP #2 7/6/16 SCH, D&C 8/4/16 BFP #3 12/26/16 EDD: 9/6/17 My Chart / My Diabetes/Pregnancy Blog My Type 1/TTC/Pregnancy Podcast: Juicebox Podcast Episode 118 A1Cs: 1/12/16 6.7% 5/25/16 6.0% 11/2/16 6.1% 3/22/16 5.8% 4/27/17 5.4% 6/13/17 5.3% "Sugar Fancy Tutu"
@jena333 Did you have a dating/viability scan? If so, go off that date. Otherwise, stick with what your office has otherwise you will be changing every scan. DS measured over 2 weeks ahead almost the entire time but my date didn't change because of the viability scan.
Got my panorama results...negative for tri 13/18 but positive for 21.
im so crushed, angry, frustrated, confused...little lost. I spent the morning trying to get in touch with the high risk office to get an appt. My OB sent the order over for two diff docs but apparently only one doc does cvs's...neither of the two the order is for (they're amnio). Sooo if I don't do a cvs this week I have to wait FOUR more weeks for an amnio plus 7-10 days for results putting me near 18w.
I got in with the second choice doc by my OB tomorrow morning for another level 2 ultrasound. If I want the cvs...that doc will need to switch me to the other. Shoot me. I feel like a number.
@heatherwilson321 I had some cramping while I was sleeping the other night (which isn't uncommon, I tend to cramp a little when I don't constantly sip on water, which I obviously can't do at night), and I woke myself up convinced I was having contractions. It's crazy what our minds can do. Hope you have better dreams from here on out!
This has sucked the joy out of hubby and me...we aren't discussing it any further with our parents or siblings etc because we honestly don't know what we will do... it's a horrible position to be put in.
@Texafornian I know I've already responded to you before but I just want to say again that I'm praying for you and your family and that you know we are all here for you! I wish I was closer, I would take you out to lunch and pedicures or something.
@Texafornian I'm glad you got in so you feel like something is being done, but I would be all over telling them I want the CVS asap and they better have that doc ready.
Now that you have gotten that accomplished.. do you want to look on your portal or call to find out if it's a girl or boy? I'm praying it's a false positive! But I have looked up the sweetest pictures of babies with t21 and they are such angels. I have a friend who's little boy was just born with t21, and then there's a photographer who has a middle aged princess with t21 and she is just gorgeous. If I can do anything to help you cope over the next few hours, days, weeks, please let me know.
Me: 27 years old DH: 27 years old Type 1 Diabetes since 2001, MTHFR hetero A1298T Dogs: Raider 4 yrs, Dex 4 yrs
Married in July 2014
TTC #1 since late Feb 2016
BFP #1 3/29/16 MMC: 5/5/16 BFP #2 7/6/16 SCH, D&C 8/4/16 BFP #3 12/26/16 EDD: 9/6/17 My Chart / My Diabetes/Pregnancy Blog My Type 1/TTC/Pregnancy Podcast: Juicebox Podcast Episode 118 A1Cs: 1/12/16 6.7% 5/25/16 6.0% 11/2/16 6.1% 3/22/16 5.8% 4/27/17 5.4% 6/13/17 5.3% "Sugar Fancy Tutu"
Texafornian i'm so sorry to hear about the panorama results, i'm not super familiar with that test, do you know what the accuracy percentage is? I hope it's a false positive and i'm really sorry for how you're being treated with the DRs....nothing more frustrating than feeling like you are just being passed around and no one really cares
Me: 36 years old DH: 42 years old
Married: 05.2012 TW:
TTC #1 Since April 2016 HSG/FSH/AMH/E2/SA all normal DX: unexplained IF spontaneous BFP 01/01/2017- Alexander was born sleeping 04/13/2017 at 19w1d ic/chorio September 2017 HSG #2 & Gonal-F/Femara/Ovidrel/IUI #1 = ep (Salpingectomy of left fallopian tube) spontaneous BFP 01/02/2018 EDD Aug 30th It's a GIRL! Cerclage placed on 03/02 Cerclage removal 08/02
I just saw your other post about how it's taken the joy out. I wish I could take you out for a pedicure too! I think you're perfectly right to not discuss it any further with anyone else until you have more information and a plan.
Me: 27 years old DH: 27 years old Type 1 Diabetes since 2001, MTHFR hetero A1298T Dogs: Raider 4 yrs, Dex 4 yrs
Married in July 2014
TTC #1 since late Feb 2016
BFP #1 3/29/16 MMC: 5/5/16 BFP #2 7/6/16 SCH, D&C 8/4/16 BFP #3 12/26/16 EDD: 9/6/17 My Chart / My Diabetes/Pregnancy Blog My Type 1/TTC/Pregnancy Podcast: Juicebox Podcast Episode 118 A1Cs: 1/12/16 6.7% 5/25/16 6.0% 11/2/16 6.1% 3/22/16 5.8% 4/27/17 5.4% 6/13/17 5.3% "Sugar Fancy Tutu"
@Texafornian I'm sorry about the results, and about how difficult getting the appointments you need has been. I can't even imagine being in that position. I'm still hoping for a false positive, and good results from your amnio. I can't even imagine how low you must feel right now, but keep us updated as you fee like it. We're always here if you need to talk.
@texafornian I'm just so sorry that this is ruining your happiness about this pregnancy. I keep typing out things to say to you and then think "No, don't say that..." Nothing comes out right. So, I'm just going to throw some thoughts out at you and hope something helps.
-I know that we never want anything to be "wrong" or less than happily normal with our babies. But, for me at least, I always felt like T21 would be one of the easiest to deal with. At least the life expectancy isn't super short, and quality of life can be pretty close to normal! There was a woman on the June BMB with me who's youngest son has Down's Syndrome. when you are ready, or if you ever decide you want to, I feel sure she would love to talk to you!
-It may seem like a super tiny chance right now, but there IS still a chance that your baby is perfectly, normally, healthy!
Like others have said, I wish I could be there to take you to lunch or something just to take your mind off it a little bit. Just know that we are all here for you if you need to curse, or scream, or tell use every single reason that this situation sucks. (hugs)
Holly said it so well. I have been starting and deleting responses.
I think you're making a perfect call by deciding not to discuss it with family. While the support would be nice (if they're the supportive type), you don't need to feel pressured to have all the answers right now. I think you have a pretty judgement-free zone here, if you want to talk out some feelings. So many hugs and continued prayers.
@daniellelynette thank you...I could actually REALLY use a pedi right now! Was planning on going tomorrow but well...different plans for my day now. Hoping this ultrasound magically looks different than my last...better news would be SO much more appreciated than more crappy news. lol
@Sugargirl1019 I just got off the phone with the nurse at my OB's office...she called in an order for me to get a CVS with the one doc who does it. He's out of the office tomorrow but the office IS aware (because I've called like 4 times plus my doc's office called) that time is of the essence. My doc told me to keep the level 2 ultrasound appointment I have tomorrow morning and that i'm to have the office then schedule me with the other doctor. I literally have like a 3-4 day window to get the CVS in before I'm stuck waiting for the amnio...sigh. But at least they seem to be doing SOMEthing now and not shuffling me around.
@amandarene112 from your lips to God's ears! We've been praying every day and night for a different outcome or for the tests to be wrong. I know it CAN happen so I keep hanging onto that. Just difficult to be optimistic when two tests have pointed to a negative.
@harleyquinn0621the accuracy of the blood work is like 99%. There are false positives but they're few and far between when coupled with a crappy NT scan pointing to the same thing. The CVS or an Amnio would be the only 100% accurate test as it's diagnostic.
@HollyGolightly09 my mind is all over the place. All of the people I know with children with Downs are just that...they're still littles. I don't know anyone with adult children with Downs to give me a fair perspective. My BIGGEST worry is that I won't be around to care for my child. I'm 43...realistically I could be gone in 35 years. What happens to my child who has been living at home? How does it affect the family financially? Does the burden fall to my other child? What health issues can come along with such a diagnosis? I know Downs is similar to Autism in that there's a spectrum...a child can be barely affected to extremely affected with multiple health issues pertaining to the heart, lungs, kidneys, et al. Therein lies my concern. I'm not sure what i can mentally, physically and financially take on. I've always been of the mindset that Downs is the ONE thing i'd be ok with blah blah blah but once you're actually IN those shoes...whole different gamut of emotions and thought processes. My husband is UBER Christian and said the same thing to me last week at the NT scan but today...today we both just stared at each other and we really DON'T KNOW what to do. SO much so that he doesn't want to tell his family because it's a decision for OUR family...for he and I to make. It's seriously THE worst thing to ever have to go through. I think if I was 20-25 my mindset would be absolutely different...but now that I have years...and fewer of them left...my perspective is a tad different. Right now my BFF and my neighbor (who terminated for T18 and has had 6 MC's) are around to lean on. They're helping tremendously. I totally welcome all stories from families with special needs children though...I think hearing all sides most definitely helps. In fact, one of my friends in my S14 group has a 21yo sister with Downs and is putting me in touch with her mom to gain a perspective regarding adulthood. xo
@Texafornian I completely understand your concerns... concern about later in their life is definitely something to worry about and not something I know much about either. Like you said, I only know "littles". I'm glad you have some support since you aren't telling your family (don't blame you a bit there!) I hope nothing I said came off in a judgey way... that's the last thing you need!
@texafornian I know a 23 yo girl with Down Syndrome. She's competing in the special Olympics this year. With the right interventions, they can lead fulfilling lives. Some are even able to live in granny pod type homes so they're "independent" but also have supervision close by if they need anything. Financially, your child should qualify for some sort of permanent disability/ social security benefits which would help your family provide for your LO. You could talk to your local school system and they legally have to provide resources to you from a very young age. As for your own mortality, we never truly know when we will die. My mom died at 49 when I was 23 yet my great grandma lived on her own until 99. As a parent, you just figure out who would take care of you're kids if you pass early and they still need to be taken care of. The love I see between genetically normal siblings and their Down Syndrome siblings is unbelievable. I don't envy the situation you are in and I know the legitimate stress of all the possibilities is overwhelming. However, those kids have so much love to give even though their world is a little different than ours.
@Texafornian My parents go to church with a couple who are married, live independently, and both have Downs. Hers is more complicated than his, but he is able to take care of her when she needs it. Those are the only adults I know personally, but I see stories in the news frequently of women who are teachers and models, and other married couples. I think researching adults with Downs is a great idea at this point. From my understanding, early interventions are often a huge factor is whether or not someone with Downs is independent later on in life.
I'm so glad you have good IRL support. I'm literally praying for you and this baby every time I see your screen name pop up, and every time I think of you. I don't know what I'd feel in your shoes, but I know I'd want all the help and wisdom I could get. I hope you and your DH find a lot of clarity about your decision in the days ahead!
Texafornian i have no stories personally of anyone with down's, I just want to say i'm glad you have such great support IRL and you are in my prayers as you work through such difficult emotions... I always said we would be ok if the baby had down's but like you said it becomes much harder when it becomes real and you have to think about all the things that will come along with it
Me: 36 years old DH: 42 years old
Married: 05.2012 TW:
TTC #1 Since April 2016 HSG/FSH/AMH/E2/SA all normal DX: unexplained IF spontaneous BFP 01/01/2017- Alexander was born sleeping 04/13/2017 at 19w1d ic/chorio September 2017 HSG #2 & Gonal-F/Femara/Ovidrel/IUI #1 = ep (Salpingectomy of left fallopian tube) spontaneous BFP 01/02/2018 EDD Aug 30th It's a GIRL! Cerclage placed on 03/02 Cerclage removal 08/02
@Texafornian Feeling really unoriginal here, but I'm late to the game and reading everyone's comments -- I second them and wish I could take you out for a pedicure too! Whatever you decide to do regarding further testing, know that we are all here for you and your LO, who I'm sure is absolutely darling. I bet s/he could hug you right now and say, "Don't worry, Mommy! I love you!" Virtual hugs and blessings of hope/courage/positivity. Also, I hope the doctor(s) treat you the best possible through all this!
Re: PGAL check in 3/1
How far along are you? 14 weeks as of today 3/4/17
How are you doing? (Mentally, physically...) mentally worried because I haven't been to the doc in almost a month so I wanna know that our baby is doing ok. I had a pain near my right Ovary last night it literally took my breath away. I'm hoping that it's just my ligaments and etc stretching I was laughing when this happend.
When is your next appointment?
March 16th !
Rant/Rave/Questions?
nope
GTKY: What kind of music do you normally listen to? Do you have a favorite band, artist, or song? I listen to everything ( no, really) I have everything from Bluegrass folk, classic rock , hip hop, country etc
Soooo if that happens to any of you ever...know there's nothing creepy in your house and that it's an actual sleep condition. Scary as all get out though...
**TW**
Losses:
#1: 8wks MMC 4/16
#2: 13+4 T21 + Hydrops 3/17
When did you start noticing some of your symptoms taper off?
I was 10 weeks on Friday and ever since then my nausea hasn't been as bad. I know the placenta starts taking over and I won't feel as much, but I just wanted to see what everyone else's experience has been. Also, my PGAL brain is going into overdrive.
Thanks so much, mamas!!
I know everyone is different, but I hope that helps!
At least my extreme fatigue and headaches are still hanging around to let me know something's going on in there.
I'm 13+3 and it is a lot better, but I still have my moments.... not feeling cocky enough to stop the Unisom/B6 every night, lol.
on the upside DH &I went to a babies r us registry event yesterday and won a diaper genie in a raffle
TW:
HSG/FSH/AMH/E2/SA all normal DX: unexplained IF
spontaneous BFP 01/01/2017- Alexander was born sleeping 04/13/2017 at 19w1d ic/chorio
September 2017 HSG #2 & Gonal-F/Femara/Ovidrel/IUI #1 = ep (Salpingectomy of left fallopian tube)
spontaneous BFP 01/02/2018 EDD Aug 30th It's a GIRL!
Cerclage placed on 03/02
@heatherwilson321 I am sorry about your nightmare. The really vivid dreams suck when they are loss related. I had two last week. I hope that you have happy dreams
@heatherwilson321 sorry too about your nightmare...they're scary. I'm right there with you...I keep waking up after dreams about getting a phone call about my genetics results or I'm telling someone about losing the baby, etc. wish just once I'd dream that all turned out ok! Hugs mama.
**TW**
Losses:
#1: 8wks MMC 4/16
#2: 13+4 T21 + Hydrops 3/17
Type 1 Diabetes since 2001, MTHFR hetero A1298T
Dogs: Raider 4 yrs, Dex 4 yrs
BFP #2 7/6/16 SCH, D&C 8/4/16
BFP #3 12/26/16 EDD: 9/6/17
My Chart / My Diabetes/Pregnancy Blog
My Type 1/TTC/Pregnancy Podcast:
Juicebox Podcast Episode 118
A1Cs:
1/12/16 6.7%
5/25/16 6.0%
11/2/16 6.1%
3/22/16 5.8%
4/27/17 5.4%
6/13/17 5.3%
"Sugar Fancy Tutu"
See.. healthy babies!!
But you're right now that I think of it. Trisomy 18 IS girls.. weird. I had a cousin born with trisomy 18. Maybe that's why I'm so nervous. And I have a cousin with down syndrome.
ETA: I am LOVING hearing that you dream the opposite! I'd love a little girl! I think my body is trying to adjust to the idea of a boy, just in case? I knew my first was a boy and I was thrilled the whole time. My second, I knew was a girl. Idk why I'm feeling so one-sided this time around excitement-wise!
Type 1 Diabetes since 2001, MTHFR hetero A1298T
Dogs: Raider 4 yrs, Dex 4 yrs
BFP #2 7/6/16 SCH, D&C 8/4/16
BFP #3 12/26/16 EDD: 9/6/17
My Chart / My Diabetes/Pregnancy Blog
My Type 1/TTC/Pregnancy Podcast:
Juicebox Podcast Episode 118
A1Cs:
1/12/16 6.7%
5/25/16 6.0%
11/2/16 6.1%
3/22/16 5.8%
4/27/17 5.4%
6/13/17 5.3%
"Sugar Fancy Tutu"
@Texafornian (((hugs)))
im so crushed, angry, frustrated, confused...little lost. I spent the morning trying to get in touch with the high risk office to get an appt. My OB sent the order over for two diff docs but apparently only one doc does cvs's...neither of the two the order is for (they're amnio). Sooo if I don't do a cvs this week I have to wait FOUR more weeks for an amnio plus 7-10 days for results putting me near 18w.
I got in with the second choice doc by my OB tomorrow morning for another level 2 ultrasound. If I want the cvs...that doc will need to switch me to the other. Shoot me. I feel like a number.
**TW**
Losses:
#1: 8wks MMC 4/16
#2: 13+4 T21 + Hydrops 3/17
**TW**
Losses:
#1: 8wks MMC 4/16
#2: 13+4 T21 + Hydrops 3/17
Now that you have gotten that accomplished.. do you want to look on your portal or call to find out if it's a girl or boy? I'm praying it's a false positive! But I have looked up the sweetest pictures of babies with t21 and they are such angels. I have a friend who's little boy was just born with t21, and then there's a photographer who has a middle aged princess with t21 and she is just gorgeous. If I can do anything to help you cope over the next few hours, days, weeks, please let me know.
Type 1 Diabetes since 2001, MTHFR hetero A1298T
Dogs: Raider 4 yrs, Dex 4 yrs
BFP #2 7/6/16 SCH, D&C 8/4/16
BFP #3 12/26/16 EDD: 9/6/17
My Chart / My Diabetes/Pregnancy Blog
My Type 1/TTC/Pregnancy Podcast:
Juicebox Podcast Episode 118
A1Cs:
1/12/16 6.7%
5/25/16 6.0%
11/2/16 6.1%
3/22/16 5.8%
4/27/17 5.4%
6/13/17 5.3%
"Sugar Fancy Tutu"
TW:
HSG/FSH/AMH/E2/SA all normal DX: unexplained IF
spontaneous BFP 01/01/2017- Alexander was born sleeping 04/13/2017 at 19w1d ic/chorio
September 2017 HSG #2 & Gonal-F/Femara/Ovidrel/IUI #1 = ep (Salpingectomy of left fallopian tube)
spontaneous BFP 01/02/2018 EDD Aug 30th It's a GIRL!
Cerclage placed on 03/02
Type 1 Diabetes since 2001, MTHFR hetero A1298T
Dogs: Raider 4 yrs, Dex 4 yrs
BFP #2 7/6/16 SCH, D&C 8/4/16
BFP #3 12/26/16 EDD: 9/6/17
My Chart / My Diabetes/Pregnancy Blog
My Type 1/TTC/Pregnancy Podcast:
Juicebox Podcast Episode 118
A1Cs:
1/12/16 6.7%
5/25/16 6.0%
11/2/16 6.1%
3/22/16 5.8%
4/27/17 5.4%
6/13/17 5.3%
"Sugar Fancy Tutu"
-I know that we never want anything to be "wrong" or less than happily normal with our babies. But, for me at least, I always felt like T21 would be one of the easiest to deal with. At least the life expectancy isn't super short, and quality of life can be pretty close to normal! There was a woman on the June BMB with me who's youngest son has Down's Syndrome. when you are ready, or if you ever decide you want to, I feel sure she would love to talk to you!
-It may seem like a super tiny chance right now, but there IS still a chance that your baby is perfectly, normally, healthy!
Like others have said, I wish I could be there to take you to lunch or something just to take your mind off it a little bit. Just know that we are all here for you if you need to curse, or scream, or tell use every single reason that this situation sucks. (hugs)
I think you're making a perfect call by deciding not to discuss it with family. While the support would be nice (if they're the supportive type), you don't need to feel pressured to have all the answers right now. I think you have a pretty judgement-free zone here, if you want to talk out some feelings. So many hugs and continued prayers.
@Sugargirl1019 I just got off the phone with the nurse at my OB's office...she called in an order for me to get a CVS with the one doc who does it. He's out of the office tomorrow but the office IS aware (because I've called like 4 times plus my doc's office called) that time is of the essence. My doc told me to keep the level 2 ultrasound appointment I have tomorrow morning and that i'm to have the office then schedule me with the other doctor. I literally have like a 3-4 day window to get the CVS in before I'm stuck waiting for the amnio...sigh. But at least they seem to be doing SOMEthing now and not shuffling me around.
@amandarene112 from your lips to God's ears! We've been praying every day and night for a different outcome or for the tests to be wrong. I know it CAN happen so I keep hanging onto that. Just difficult to be optimistic when two tests have pointed to a negative.
@harleyquinn0621the accuracy of the blood work is like 99%. There are false positives but they're few and far between when coupled with a crappy NT scan pointing to the same thing. The CVS or an Amnio would be the only 100% accurate test as it's diagnostic.
@HollyGolightly09 my mind is all over the place. All of the people I know with children with Downs are just that...they're still littles. I don't know anyone with adult children with Downs to give me a fair perspective. My BIGGEST worry is that I won't be around to care for my child. I'm 43...realistically I could be gone in 35 years. What happens to my child who has been living at home? How does it affect the family financially? Does the burden fall to my other child? What health issues can come along with such a diagnosis? I know Downs is similar to Autism in that there's a spectrum...a child can be barely affected to extremely affected with multiple health issues pertaining to the heart, lungs, kidneys, et al. Therein lies my concern. I'm not sure what i can mentally, physically and financially take on. I've always been of the mindset that Downs is the ONE thing i'd be ok with blah blah blah but once you're actually IN those shoes...whole different gamut of emotions and thought processes. My husband is UBER Christian and said the same thing to me last week at the NT scan but today...today we both just stared at each other and we really DON'T KNOW what to do. SO much so that he doesn't want to tell his family because it's a decision for OUR family...for he and I to make. It's seriously THE worst thing to ever have to go through. I think if I was 20-25 my mindset would be absolutely different...but now that I have years...and fewer of them left...my perspective is a tad different. Right now my BFF and my neighbor (who terminated for T18 and has had 6 MC's) are around to lean on. They're helping tremendously.
I totally welcome all stories from families with special needs children though...I think hearing all sides most definitely helps. In fact, one of my friends in my S14 group has a 21yo sister with Downs and is putting me in touch with her mom to gain a perspective regarding adulthood. xo
**TW**
Losses:
#1: 8wks MMC 4/16
#2: 13+4 T21 + Hydrops 3/17
@texafornian I know a 23 yo girl with Down Syndrome. She's competing in the special Olympics this year. With the right interventions, they can lead fulfilling lives. Some are even able to live in granny pod type homes so they're "independent" but also have supervision close by if they need anything. Financially, your child should qualify for some sort of permanent disability/ social security benefits which would help your family provide for your LO. You could talk to your local school system and they legally have to provide resources to you from a very young age. As for your own mortality, we never truly know when we will die. My mom died at 49 when I was 23 yet my great grandma lived on her own until 99. As a parent, you just figure out who would take care of you're kids if you pass early and they still need to be taken care of. The love I see between genetically normal siblings and their Down Syndrome siblings is unbelievable. I don't envy the situation you are in and I know the legitimate stress of all the possibilities is overwhelming. However, those kids have so much love to give even though their world is a little different than ours.
I'm so glad you have good IRL support. I'm literally praying for you and this baby every time I see your screen name pop up, and every time I think of you. I don't know what I'd feel in your shoes, but I know I'd want all the help and wisdom I could get. I hope you and your DH find a lot of clarity about your decision in the days ahead!
TW:
HSG/FSH/AMH/E2/SA all normal DX: unexplained IF
spontaneous BFP 01/01/2017- Alexander was born sleeping 04/13/2017 at 19w1d ic/chorio
September 2017 HSG #2 & Gonal-F/Femara/Ovidrel/IUI #1 = ep (Salpingectomy of left fallopian tube)
spontaneous BFP 01/02/2018 EDD Aug 30th It's a GIRL!
Cerclage placed on 03/02