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Pregnant after IF
babystinkbreath
member
Devastated
babystinkbreath
member
This morning has been the worst day of my life, and I have had many days that I didn't think I could ever top.
My poor little girl has some major problems with her brain. The exact condition is Aqueductal Stenosis, meaning that there is a block across one of the parts of the brain causing a build up on fluid. We really don't have a lot of information at this point but we know that we need to go for more testing and a 2nd opinion.
I spent the whole u/s in tears because I just knew something was wrong. And when the doctor was going over everything with us I burst into tears again. I'm basically a huge hot mess today. So is DH.
Her suggestion was 1) get an amnio with chrom testing and a micro array testing, 2) genetic counseling, and 3) consult with a neurosurgeon.
I had another break down when she said neurosurgeon because my Mom works in the Neurology Dept of the one of the best children's hosp in the country. As unfair as all this is, I guess it is some sort of luck that we have personal connections with some of the best peda neurologists in the country.
My Mom went into full nurse mode when I told her and started making phone calls to her boss. And the prenatal diagnosis center at CHOP will be calling me this afternoon to schedule an appointment for a 2nd opinion. I'm not sure when they will be able to fit me in but the next steps will be to get all my medical records to bring with me. And we will prob discuss an ammio, more u/s, a fetal MRI etc. so that we can get as much info as we can.
I guess the good news is that they don't think this is T18 because there were no other markers. But we need to figure out if this is some sort of other genetic problem (which amnio woud tell) or if this is an isolated malformation. According to my neurologist friends this is not incompatable with life and can be managed. But this most likely means that baby will have to have major brain surgery very shortly after being born.
I'm just so heart broken and just can't make sense of this. How is it fair that this little girl will have to fight so hard and have some much stacked against her before she is even born. DH and I just trying to cope and figure out what is next. Any T+Ps you can send my way would be very appreciated.
~Lauren~
**SAIF always welcome.**
After 2+ years, 3 losses, 3 surgeries, 2 IVFs and 1 FET our little girl is here.
my read shelf:
Read in 2011: 56/55
Read in 2012: 31/30
Read in 2013: 1/25
This discussion has been closed.
Re: Devastated
2/21/11: IVF #1 Begins and results in TWINS!
11/4/11: The twins are born at 36w4d!
11/5/11: We said goodbye to our sweet baby girl as she was born with multiple complications and a severe heart defect, Hypoplastic Left Heart Syndrome.
I am so, so sorry. Hopefully with your mom's connections you can get some answers soon. Sending tons of T&Ps your way!
11/2010 DH SA good...01/2011 HSG is clear...01/2011 Consult with RE
suprise BFP but m/c on 2/7/11
03/2011 50 mg clomid=BFN
04/2011 clomid+bromocriptine+IUI=BFP at 11dpiui
Beta #1(11dpiui)=33, Beta #2 (13dpiui)=96, Beta #3 (20dpiui)=1910, Beta #4 (26dpiui)=20,134
5 REs + 3 surgical hysteroscopies for septum/lap + 3 failed IUIs
IVF w/ICSI/AH & acu = BFP!, unexplained spontaneous m/c @ 8w2d (our little girl),
FET w/acu = BFP!, B/G twins!, lost MP @19w, dx w/funneling cervix @20w,
twins nearly lost to IC @21w, saved by rescue cerclage, 17P & 16w of bedrest
Our twins born @36w4d via CS when A came foot first
Thankful for every day
My hearts hurts for you so much. I hope that further testing shows a good prognosis and I am so glad you have the best resources at your disposal.
Tons of positive thoughts your way !!!!!
Early loss 10/08
Lap 1/09
IVF #1 "natural IVF" - 1 egg retrieved, missed m/c
Tried several mini-stim cycles with no response
Switched clinics - dx'd as carrier for Fragile X
IVF #2 MDL protocol Jan/Feb converted to IUI, BFN
IVF #2 take 2: Antagonist, one embie, BFN
IVF #3: Antagonist, no fertilization
One last ditch effort at OE IVF (antagonist with Clomid) cancelled
DE cycle #1 Jan/Feb 2011, BFP, ectopic
DE cycle #2 June/July 2011 - BFP
10/28/11 Baby girl lost at 17 weeks due to pre-term labor. We love and miss you.
DE cycle #3 June/July 2012 - BFP, twins, both heartbeats stopped, D&C
2 frosties but don't know what's next
FET Dec 2012: BFP! Praying this one sticks for the long haul!
Beta #1 (9.15.11) ~ 437!!! Beta #2 (9.19.11) ~ 1,854!!! EDD 05.24.2012 TWINS!!!
Make a pregnancy ticker
After 2+ years and multiple treatment cycles,
including an IVF vacation in Costa Rica/Panama,
IVF #2 brought us our miracle baby!
Surprise! Baby Boy is on the way!
IUI#2 - 01/07/09 = BFP!!! Twins!! Pre-term labor 20 weeks
IUI#3 - 1/31/10 = BFP!!!! M/C - 8wks
IVF #1 - 7/2010 = c/p
FET - 9/2010 = another c/p
IUI#4 - 2/14/11 = BFP!
Because we're fancy like that.
4 Clomid cycles + 3 IUIs w/ injectables + 1 IVF = 1 m/c, 1 ectopic
FET May 2011 = BFP! Beta 1 (8dp5dt): 336, Beta 2 (12dp5dt): 2033, Beta 3 (14dp5dt): 4706
? So thankful for our little guys, born at 33 weeks. ?
My heart sank when I saw the title of your post! I am so very sorry and will continue to pray for your precious little girl. The only words of comfort I can give is that CHOP is a fabulous hospital and the doctors truly are the best in the country. It gives me great comfort to know its in our backyard, and that the best pedi neuros in the US will be involved in your baby's care if needed.
Lots of prayers for your family!
Our Journey to Brenden
IVF #1: 4/11(Follistim/Menopur/Ganirelix) 10 retrieved/8 mature and all 8 fertilized / 2 embies transferred ... nothing to freeze Beta 5/10 = BFN
IVF Take 2 Long Lupron July 2011
ER 7/3/11 (our 6th anniversary) - 8 retrieved/7 mature/fert ....ET 7/6/11 - 2 beautiful grade A 8 cell embryos
Beta 7/18/11 - 149!!! Beta 7/21/11 - 311 Beta 7/28/11 - 2,000 8/5/11 - Empty Sac 8/8/11 - There's a yolk sac and maybe a heartbeat 8/12/11 - Fetal pole, yolk sac, heartbeat 8/18/11 - Baby looks GREAT!
3 babies waiting on ice
Oh, sweetie, I am so heartbroken for you. I know what it's like to get bad news and worry about our little babies. It's not fair that they have to start fighting so young. But guess what? They made it this far, they are big time fighters, and I am hoping they will exceed all expectations every step of the way.
If there's anything at all I can do, even if it is just to talk, please PM me. I'll keep you guys and your beautiful girl in my T&Ps.
Huge hugs, we are all here for you.
Jan to April 2010 - Clomid - All BFN
June 2010 - IVF - BFN
Oct 2010 - FET #1 - BFN
Dec 2010 - endometrial biopsy
Jan 2011 - Surprise BFP! - m/c at 6w5d
March 2011 - FET #2. Thawed 11 Day 1 embryos; 5 'exploded' / possible lab error?
ET 4/2/11 transferred 1 blast & 1 morula
Beta#1 10dp5dt =81; Beta#2 12dp5dt =222 Beta#3 16dp5dt =1337
It's a BOY!!!
Unexplained IF
Clomid cycle 1-3 - BFN IUI 1-3 - BFN
TTC #2 with PCOS since September 2009
BFP, Femara 7.5mg, Ovidrel, IUI. Beta #1 17dpIUI -495 Beta #2 19dpIUI-1031
Lovebugs2012
My Blog
PCOS, RPL, & Anti Cardiolipin Antibody
Huuuuuge hugs coming your way!
IVF # 1 ~ Antagonist ~ ER 1/27/11~ ET 1/30/11 ~ + HPT 7dp3dt
DD born med-free on 10/24/11
IVF #1: 4-11-11= Transferred 1 beautiful blastocyst I named "Nugget"
5 Snowbabies! Beta#1 4/21= BFP! 226; Beta#2 4/25= 944
DS born 12/14/11
Baby #2 FET Nov/Dec 2013
12/13 Beta#1=BFP 349; 12/16 Beta#2=1,089. First ultrasound 12/26. DS#2 born 8/8/14
~~PAIF/SAIF Always Welcome~~
TTC since 2007
6 IUIs, 3 IVFs, and 2 m/c :< PCOS, Blood Clotting Disorder & MFI
IVF #2 Aug 2011 is a BFN:<
IVF #3 March 2012 is a BFN
Not sure what to do now. Sad and lost.
I am so so sorry. Lots of T&Ps for you and your little girl. Please keep us updated.
((hugs))
I am so sorry
I wish you all the best as you go through testing. Hopefully the condition is manageable and everything will work out well.
Just something to maybe give you some hope - my boss' daughter was pg with her 2nd, a little girl. At her anatomy scan they told here there was serious issues with fluid around her heart (not positive about the exact issue). Her only chance for survival was considered radical surgery in utero, yup, in utero. Of the 10 babies this was performed on, only 4 survived. The odds weren't good.
One month later, while they were still making arrangements, meeting with docs, etc, she had another u/s that showed the fluid was GONE! Here doctors at CHOP (I am from south jersey) told her it was a miracle. He said that he had never seen anything like it. When she was born she still needed surgery, but the in utero surgery was unnecessary.
Here's hoping you are blessed in the future with better news. I will be thinking about you and your little girl.
TTC Since 10/08 4 IUIs=BFNx4
IVF#1=BFP!! Twins!!
Bradley and Billy born and lost on 2/2/11 at 19w2d due to pPROM/PTL. I miss you, little angels.
IVF#2=BFN
IVF#3=c/p IVF#4=Empty Follicle Syndrome; 1 mature, fertilized, & made it to blast. 5dt of "the lone ranger" on 9/6. Please stick, little one!
TTC Since April 2010
Dx: Hypothyroid, High FSH, Low progesterone, Blocked left tube
BFP 5-2-11; m/c 5-9-11
July 2011: 50 mg Clomid + Ovidrel + IUI #1 (7/13) + Progesterone = BFP!!
EDD: 4/04/12
TTC since 1/2008
Blythe Elizabeth is here March 27,2012
Oh Lauren, I am so sorry that the news was not better.
I absolutely believe it is a blessing that you have a foot in to the exact doctors she'll need. Sending you all the thoughs prayers and hugs I can through this rough time.