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June 2016 Moms
rachieee2
member
UPDATE- Severe heart defect-she did not survive
rachieee2
member
i need some advice and many prayers... Our little girl has been diagnosed with an atrioventricular septal defect (a very severe heart condition-a hole in her heart, a small valve and transversed arteries). The markers that told us something was wrong was at 13 weeks her NT measurement was 9.7mm and each week the fluid has spread significantly to her belly and her lungs. I'm now 21.3 weeks pregnant. We had a CVS and micro array testing at 13 weeks and all chromosomal factors have been ruled out. They r thinking this was a random case of her getting it. They also suspect she has clubbed feet.
The paediatric cardiologist and the high risk OB told us this week that they don't think she will survive another five weeks. If we have a stillbirth we need to be induced and they want to do more tests on her. If by miracle we make it full term then I have to deliver in Toronto sick kids and she will undergo many high risk heart surgeries and it will mean many months in the NICU. We have a long road ahead of us either way.
I don't feel her move that much so it's hard without the reassurance that she's still ok. We have to go for weekly ultrasounds to check for a heart beat now. My anxiety is through the roof. There is nothing they can do in utero so all we can do is cling to hope that we beat the odds.
I also had a missed miscarriage last June at 12 weeks. So I already know what it's like to lose one baby. This is my second pregnancy.
I don't post on here often but I could use the support. My question is... Do I still go ahead with doing a nursery and planning as usual? Or do I wait? We bought a stroller/car seat the day before we got this news and my husband put it in a closet for now... What would u ladies do? Any support, similar stories, or advice is appreciated. Xoxo
**UPDATE**
Hi ladies. I appreciate your support and thoughtful replies.
Unfortunately Our baby girl did not survive. I had a bad feeling on Tuesday and went in to get an emergency ultrasound where we found out she had passed away
Paisley Christine Smith was born still at 755am feb 17, 2016 after 13.5 hours of labour. Weighing 1 pound 6 oz and 9 inches long. We got in as many cuddles with her as we could. Her heart condition was too big for her to overcome but she was a little fighter.
Thanks again for for all of the support. I wish you all the best with your beautiful babies and will be thinking of u all in June xo
The paediatric cardiologist and the high risk OB told us this week that they don't think she will survive another five weeks. If we have a stillbirth we need to be induced and they want to do more tests on her. If by miracle we make it full term then I have to deliver in Toronto sick kids and she will undergo many high risk heart surgeries and it will mean many months in the NICU. We have a long road ahead of us either way.
I don't feel her move that much so it's hard without the reassurance that she's still ok. We have to go for weekly ultrasounds to check for a heart beat now. My anxiety is through the roof. There is nothing they can do in utero so all we can do is cling to hope that we beat the odds.
I also had a missed miscarriage last June at 12 weeks. So I already know what it's like to lose one baby. This is my second pregnancy.
I don't post on here often but I could use the support. My question is... Do I still go ahead with doing a nursery and planning as usual? Or do I wait? We bought a stroller/car seat the day before we got this news and my husband put it in a closet for now... What would u ladies do? Any support, similar stories, or advice is appreciated. Xoxo
**UPDATE**
Hi ladies. I appreciate your support and thoughtful replies.
Unfortunately Our baby girl did not survive. I had a bad feeling on Tuesday and went in to get an emergency ultrasound where we found out she had passed away
Paisley Christine Smith was born still at 755am feb 17, 2016 after 13.5 hours of labour. Weighing 1 pound 6 oz and 9 inches long. We got in as many cuddles with her as we could. Her heart condition was too big for her to overcome but she was a little fighter.
Thanks again for for all of the support. I wish you all the best with your beautiful babies and will be thinking of u all in June xo
Re: UPDATE- Severe heart defect-she did not survive
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Triplets due 6/29/16 also from an IUI!
As far as the nursery, work on it now if you want/need something to focus on. And if everything ends up well then you can always work on the nursery while your baby is in the NICU.
Baby may be in the hospital for some time and this will give you time to purchase the frilly stuff. I would buy what's necessary to bring baby home, bare minimum but maybe add in a cute outfit or two.
Sending hugs and prayers!
TTC since 10/2010-BFP 12/23/2011
Baby 2.0 BFP 10/16/2015
My son, who is almost 2, was born with several heart defects and somehow by miracle he never needed any type of surgery. His case is "closed" but still gets echos every two years. His ductus valve remained open for too long after birth, making blood flush to the wrong parts of his body (it ended up closing naturally). He has three holes in his heart and a narrow aorta which they assumed was coarctation at birth, but ended up stopping the narrowing process in just enough time for his heart to function adequately. I know there are other mamas here who have had babies with heart defects also. Technology today is amazing, you never know what the outcome can be these days as they're progressing so quickly especially in the area of cardiology.
I wish I had more advice to offer you. As far as preparing for your baby, do what feels right.
When we we're waiting to know whether this baby has Down syndrome, I couldn't look at her room or think about being pregnant. I didn't want anyone to acknowledge that I was having a baby. After finding out she does have it, it was then that I was able to accept the truth and start preparing for her. That's just what felt right to me at those times.
This is a very raw and sensitive time for you, you need to be selfish and you need to focus on nothing but you.
I'm sending so many prayers that you'll get nothing but good news from here on out. We were told so so so many bad things, like we'd lose our baby, but that ended up not being the case. You never know! We are all here to support you when you're ready!
With that said, I personally would keep hoping but wouldn't work on a nursery or make any purchases. I would find it more painful to undo the room if the worst case scenario did happen.
I'll be thinking of you.
We we are here for you. And I will be sending hugs and prayers to you!
DST T4L
I lost my last baby halfway through gestation and haven't done a single thing to prepare for this baby even though I'm 23 weeks along. (But honestly, when I had my first son I didn't prepare much until the third trimester either. But we also didn't decorate a nursery.)
Not to sound pessimistic, but I'd either pack a bag for the hospital, or have a good idea of what I wanted to grab, in case an emergency trip is needed. (Probably a good idea for all of us, really.) That's about all the preparing I'd do until at least the third trimester.