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Old 08-03-2010, 01:23 PM   #1
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UPDATE 9/13 - U/S today. Scared & wondering if anyone has had a similar experience??

Posted in the Dec DDC but figured I'd get more replies here..

US was an hour and a half ago.
Tech did her thing and then the doctor came in and looked again. She said that the brain and heart didn't look the way they should and that she wasn't happy with the pictures and she's "suspicious" that something is wrong and I'm measuring at only 17 weeks, so over two weeks behind. She said she couldn't tell me anything more than that but that she wanted me to go to the children's hospital in the city for a fetal scan.
My doctor just called. he's not in tomorrow but he wants me to go in at noon to see another doctor.. Like I said, I JUST had the u/s.. I'm so scared.

What could this even be? She is suspicious, but she refused to tell us what she thinks it may be and I'm so worried.

UPDATE:
Went to the Doctor and he told us that it appears that one of the chambers in the heart is underdeveloped and that the structures separating the parts of the brain appear to be missing. He said that it looks like this is not a viable pregnancy. They're going to get me into the city in the next week and we'll have the baby after it's confirmed.
Thank you all so much for your kind words.

Update 2:
I STILL have not heard from the hospital, so I called my doctor today and insisted that he tell me exactly what was in the u/s report. He said that my baby has Hypoplastic Left Heart Syndrome (HLHS) and that in the brain it is missing the choroid plexus, he said it's the part that produces cerebral spinal cord fluid. The baby is also missing the septum pellucidum, and the thalamus should be in two parts but it appears to be fused together.
If my baby lives, it probably wouldn't get the heart transplant it needs and it wouldn't be able to do much at all because of all of the brain issues

Update 3:
not much of an update at all, but I do have my detailed scan tomorrow in the city.
I'd been dealing with my family dr. and his practice b/c my OB was away on vacation, but he called me late Monday night after reading my ultrasound report. He talked to me for half an hour and answered every question I had. He reassured me that I can carry on for as long as I want to and that because this is not an abortion, but an early induction, there is no law against delivering at anytime I want.
My husband and I have put a lot of thought and tears into this decision, and we know now after talking with many different people, (religious friends and family, a special education teacher, rehabilitation workers) that if our baby can live, and not suffer, we will carry on. If, however, we find out that this baby will be in pain, that it won't have a quality of life that we would wish for our child (the ability to play with it's siblings, to smile and laugh) we can't carry on. I've struggled with this and thought long and hard about it, but I cannot bear to see my baby in pain if there is no hope for survival.
Again, we're not giving up on this baby. We will seek answers to all of our questions and speak to the specialists we need to speak to before any deciison is made. This has been the longest and hardest week of my life, and although I know many of you may not agree with my feelings and decisions, I really hope that you respect them and don't judge me for them.
No decision I make is being done to escape hard work and a special needs child (come on, I'm legally blind), but out of love for a baby that we tried for almost a year for.
Please send all of your positive thoughts and energy our way. Maybe, just maybe, we'll get good news tomorrow.

UPDATE 4:
We went to the children's hospital yesterday. We spoke with three specialists and they all told us basically the same thing, BUT, nobody, absolutely none of them, pushed us to induce at any time. It is our decision and we were supported by the entire staff when we discussed our concerns.
We were told, and were able to see for ourselves, that our precious baby girl has a severe heart condition. It appears that along with HLHS she has another heart condition as well and it just doesn't look good for her.
On top of the heart conditions, she is missing both the front of her brain and the back of her brain, one you need for basic bodily function, and one you need for your motor skills.
She also apperas to have facial deformities and nobody could find her stomach.
Needless to say, it's been a hard week and a half. Thank you again for your support.



UPDATE 8/20
I wasn't going to post this here because it's so fresh to me, and I don't want to hear comments that will only upset me further, but I feel I owe it to you women for supporting me and offering the kind words and support the way you have.

My daughter, Finley, was born at 10:40pm on Wednesday August 18th. She was moving slightly, but she was moving. The nurse cleaned her up quickly, checked her heartbeat and gave her to my husband to cuddle. We were shocked since we didn't expect her to live until her birth. We were told then that we may have her for minutes or hours. We were unsure of the time, but we knew that as long as her heart was beating, she would not be put down.
My parents arrived an hour later and she was still alive, although she had been unconscious from shortly after her birth. It was like she was sleeping. Nanny and Papa got to cuddle her. We tried not to cry while we were with her, but it was impossible not to. Like my husband said, as you hold her, you think about the other two kids at home and how you'll never get to see her do the things that we see them do.The things we sometimes take for granted.
They were correct about her facial issues, and I'm not comfortable going into the details here, but she was still absolutely perfect to us. We looked at her closely, put our wedding rings on her, took pictures, and kissed her over and over.

I know this is not the decision every parent would make, but we truly do believe, as do all of her care providers, that she had Trisomy 13. Miracles do happen, and the odd baby does reach their first birthday, but many do not even make it to term. Finley was VERY small for her gestational age, and this was also working against her. She was still very active, and I hoped that delivering her now would at least give us a few short minutes with her.

I couldn't let her die inside of me. I needed to do this now and though I struggled with the choice for two weeks, in the end, even though I'm not all that relgiious, I believe that we did receive a miracle. She lived for over two hours in our arms, and I do not regret my choice. She may have been unconscious, but she felt my husband, my parents and myself. She was cuddled and kissed and tole she was loved just as she would have been if she had been born full-term or still.

Again, thank you so much for the support. I'm at peace with my decision and although I've cried so much the past two days, and I'm sure the funeral today will be incredibly hard, I feel like we did what we had to do to allow her to pass away with dignity and as little suffering as possible. I would never judge another woman in my shoes, regardless of their decision, because unless you've been there it's impossible to fully comprehend the emotions. Delivering her now in no way implies that I love her any less than if I had had her full-term and she had lived for two minutes or one year. She is my daughter and I will always miss and long for her.

Update 9/13
Hi Mamas
It's been nearly four weeks since my sweet girl was lost.
I got a call today with my amnio results. Finley did not have straight Trisomy 13, she had an unbalanced Robertsonian translocation of chromosomes 13 and 14. They suggest that we get tested since we could be carriers due to it being a translocation, but we're TTC again and I'm not prepared to hear that it was me or my husband that caused this awful thing to happen to my precious daughter.
They told me that if we are carriers, then we have up to a fifteen percent chance of it happening again, but if we're not carriers, then it's a one or two percent chance. I'm heartbroken that it was a translocation. It could still be a fluke, but the chances are higher that it was my fault I knew I shouldn't have gotten the amnio. I wasn't freaking out until now.
I do, however, feel better knowing exactly what was wrong with Finley. I've been suffering with so many emotions from regret to anger and jealousy of other pregnant women (I know, that sounds horible ) but I know for sure that she was far too sick to live. The doctor assured me today that if she lived, she would not have lived long and this was extremely serious.
I am hopeful that I'll be pregnant again soon, but it's also so scary. I keep hoping that the next baby isn't as sick. I can't go through this again. I mis her so much and just wish I could feel her kicks again, but I know that I did what I had to do to protect her from any suffering.

I said no to testing, but I wonder if I should.. fifteen percent is high-ish. But if they say it was me, I don't know if I will be able to handle it.

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Last edited by CandiceM; 09-13-2010 at 03:20 PM. Reason: Update
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Old 08-03-2010, 01:32 PM   #2
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

I don't know, but wanted to offer some I'm sorry mama... hang in there.
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Old 08-03-2010, 02:05 PM   #3
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

(((HUGS))) hopefully its nothing!
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Old 08-03-2010, 02:21 PM   #4
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

Hopefully it is nothing, mama! Wish I had some advice. I can only imagine how scared you must feel. Big hugs!
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Old 08-03-2010, 02:28 PM   #5
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

Good luck mama! We will be thinking about you.
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Old 08-03-2010, 02:28 PM   #6
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

I'm sorry they couldn't tell you any more information. I would definitely be questioning too. I'm sure they aren't able to tell you specifics until they look again, but it would've been nice to clarify what "not right" means. I am praying for you Mama. I pray it is nothing, please keep us posted.
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Old 08-03-2010, 02:29 PM   #7
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

Oh Candice <3 I am praying for you and your bean and as you know I know were you are at. It MAY be just fine and even if not you can deal with this mama!! Hugs
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Old 08-03-2010, 02:30 PM   #8
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

I'm not sure of what could be going on but wanted to offer
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Old 08-03-2010, 02:31 PM   #9
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

Mama. Keep us updated and hopefully it's nothing but a small baby. I will keep you in my thoughts and prayers.
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Old 08-03-2010, 02:34 PM   #10
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Re: Ultrasound was today.. Scared and wondering if anyone has had a similar experienc

I too hope the detailed scans show nothing, I'm sorry you are going through a scary time right now.
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