Hey everyone, I wanted to check in to thank everyone who showed so much support and to wish you nothing but happiness in the months to come. As some of you may remember, my NIPT testing came back positive for Trisomy 21 two weeks ago. I was put in a position of figuring out how to proceed but that decision was ultimately made for me. And one day I'll be grateful for that.
We had an appointment Wednesday to meet with a genetics counselor and then have CVS testing done by my peri so we could confirm the diagnosis. During the ultrasound prior to the CVS, I stupidly remarked how quiet and still Gabriel looked on the screen compared to the week before but I just didn't get it. The peri quickly came in and told us that Gabe had passed, his little heart had stopped beating. He was measuring spot on at 13wks 3days so it had just happened. My peri strongly recommended a D&E instead of waiting to miscarry naturally so I had the surgery Wednesday afternoon. To say I'm devastated is the biggest understatement in the world. I love him with all my heart and miss him so much it hurts. I can't even look at myself right now because every time I see my flat belly it just overwhelms me with grief.
I will be keeping ALL of you in my thoughts and hoping for nothing but happy and healthy babies. I will also be peeking in come November to see your beautiful pictures. But I did want to share two things with you before I go.
The first is about the NIPT. When I received the positive result, my OB told me it was over 99% accurate and I took that as a fact. I was actually curious on why she wanted me to have CVS or amnio done if it was that accurate. In talking with the genetic counselor, that number is not always accurate. She said it can vary greatly based on your individual sample. She ran the numbers on mine and it was actually 87% predictive. Still horrible, but a 13% chance of error is a HUGE difference between a 1% chance of error. I say all of this to tell you that if you ever end up in my boat with a positive NIPT, please please please have diagnostic testing done before making any decision on how to proceed. In my case it didn't matter, but it could have. Greatly.
The second thing I wanted to bring up is tricky. I guess I'll approach it this way: thank you to each and every one of you who didn't tell me to embrace my "blessing" of a Trisomy 21 diagnosis. Fact is, I wouldn't wish this "blessing" on my worst enemy. Our genetic counselor talked with us quite a bit about what a Trisomy 21 diagnosis would mean. She brought up the point that media portrays Down Syndrome typically in the very best case scenario. We see people with Downs who model and go to college and get married and doing all the things that a "typical" life affords you. But those examples are not the typical outcome of a child born with Down Syndrome. Gabe had a 70% chance of fetal demise, 50% chance of being born with a major heart defect, was 10-15x more likely to develop leukemia and/or lymphoma, had a 72% chance of hearing and/or vision problems, an increased risk of autism, a 50% chance of thyroid problems and could, at best, approach the IQ of an 8 yr old as an adult. And these were just the major things mentioned. I was told that he would experience finger pricks, shots, and blood collection approximately 100 times in his first year of life alone and we could anticipate hopsital stays every time he encountered a respiratory illness. It was going to be a hard life for my little man, at best. So my husband and I had spent the last two weeks of our lives agonizing: would it be better to bring him into this life or to terminate it? Could I actually sign a piece of paper terminating my child's life? Or could I envision myself as an old lady dying and my last thought being the agonizing question of what would happen to my disabled son once I was gone and he was left alone? And I can tell you I never experienced agony as I did trying to make that decision. In the end, although I'm still in a state of shock and blinding grief, I'm so glad I never had to make that call. With all of my heart, thank you to everyone for your compassion. It meant the world to me. And for you who sat on your high horse and advised me to embrace my blessing, I pray with all my heart you never have to experience this blessing. I hope you get to hold on to your precious healthy baby along with your lofty moral superiority.
All my love to each and every one of you. I'm really going to miss this place.
Me: 38 l DH: 41
Gavin - 8/27/10
*TW*
Gabriel - 2nd tri loss 5/17/16 Trisomy 18 & 21
Hope - 2nd tri loss 12/7/16 complications from pneumonia
Re: My Update and Goodbye *tw*
RE appt 12/2015
CD3 labs normal | HSG 1/8/16 clear | H's SA excellent
Dx: Unexplained Infertility
February 2016, cycle 16 - cycle #1 with Letrozole 5mg + TI | Progesterone=20.6
BFP 2/24/16 - EDD 11/7/16
It's a girl!
Isla Quinn born 10/29/16 at 38w5d via C/S
--------
TFAS March 2018
RE consultation 8/2/18
Suprise! BFP 8/8/18 natural cycle | EDD 4/19/19
It's a girl!
Afton Noelle born 4/10/19 at 38w5d via natural VBAC
BFP #2 3/21/16 Nora Mae born 12/6/16
BFP #3 11/27/20 EDD 8/6/21
Jan 10, 2016: Cycle 16. Femara 5mg + IUI #3 - BFN.
Feb 10, 2016: Cycle 17. No IUI or meds. Taking a break - Natural BFP Mar 5, 2016!!!! EDD Nov 16, 2016
Moving to IVF March 2016
Beta at 10dpo: 21, Beta at 12dpo: 98, Beta at 14dpo: 264, Beta at 16dpo: 745
U/S 6w6d: single beautiful heartbeat of 121bpm - It's a boy!!!!
Nov 3, 2016: Our family became complete. Welcome DS #2.
Also that was incredibly eloquent, especially for someone going through such unimaginable grief. I don't know that I would've had the strength to be so polite to those who told you to embrace the "blessing" of a T21 diagnosis.
As @DunkinDecaf said, I'm not sure I could be so polite, but people like that really have no desire to understand the complexities and challenges of life, do they. I'm sorry, and my thoughts are with you.
g
Unexplained infertility
NTNP: 10 years!
TTC: Since 2014
5 IUI: BFN
IVF 1: MC
IVF 2: BFP! DD 11/20/16
Awesome Kid #2: Due November 2016!
Lean on DH during this time and know that we're all thinking about you both!
Georgia 3/15/2012 Matilda 6/12/2014 TWINS!! Babies 3&4 EDD 11/22/2016
Married: September 2012
Began TTC: September 2015
BFP #1: 10/12/16, EDD: 06/23/15,
(pPROM, 16 wks + emergency D&E 12/31/15)
BFP #2: 03/09/16, EDD: 11/16/16
BFP 3.8.16 EDD 11.20.16
Sweet DD born at 41 weeks Feb 2015
*Diagnosed with lean PCOS*
TWINS due 11/22/2016
DD: 8/20/14; DS: 11/13/16; DD: 5/3/19; DD: 8/31/21; Baby #5 (team green) due 3/24/24