Sorry I vanished but it has been a really stressful few weeks. I spent a lot of time mourning after I got the odds back. I tentatively began to research DS stuff because I wanted to be prepared. Well I had the amnio done last Monday (not bad in terms of pain). First, we are having a little girl (another one). She is beautiful. Second, she does have Down Syndrome. We will not terminate. Right now we're preparing ourselves as best as we can. We have another ultrasound August 8 to check for heart problems. At the 16 week scan, her heart had four chambers and appeared to be functioning well. Her name is Jude Therese. We're so happy she's alive and that it's not Tri18 even though we're scared about the future.
Congratulations on a little girl!
It sounds like it has been quite a stressful time for you all and my thoughts have been with you.
I suppose that now you know the results for certain it may take that uncertainty away for you? Now you are free to plan and research and make decisions?? (Im sorry if this is wrong. I have not been in your shoes before)
:) Happy news that her heart is looking well.
I really hope that you are ok emotionally and physically, as I imagine this would have been quite a ride and not the news you were hoping for.
I can only wish you the healthiest and easiest of pregnancies, and congratulations again on your little girl :) a beautiful name for a beautiful little spirit!
That does sound like quite a roller coaster to ride. I know for me (with other things) that knowing does help a lot - it's the time of not-knowing but knowing that there might be something to know that is most challenging. So I hope that (and it sounds like) you are feeling more settled and able to deal with whatever comes moving forward. Is your partner feeling more hopeful about the situation? I remember that when you first got the results you were worried about his response.
Wishing you loving kindness, wholeness, and health for all of you.
Than you so much for updating us, I know you have been in my thoughts. I agree that the 'not knowing' is the hardest part. I personally deal so much better when I know what I am faced with. I will keep sending loving heart energy your & her way, making sure her heart develops well & will be strong enough to support her through many happy years of life!
Thanks everyone for the kind words.
It does help to know, and although sometimes I wish I could just enjoy my pregnancy, I am glad to have some space to work through my feelings. I am researching of course but am trying to make sure I have what I call "No DS times" LOL. Just giving myself a little break from thinking, reading, etc about DS. My mom is almost too supportive and has gone kind of crazy sending me links, and books. It's nice of her but she wants to talk about all of it and I'm really not there. She doesn't quite understand that everything is not always going to be wonderful and that is going to be hard for us.
My husband is actually doing great. He's worried like crazy about money and health problems but he's pretty in love with Jude. The DS doesn't phase him, it's the "practical concerns." I also think he's worried about losing the baby once they're here, and that has him freaked out.
My midwife office has been wonderful. I was scared they were going to kick us out and the midwife I last saw was like "No! Of course not" and gave a big hug. The fetal medicine Dr, and she have been very supportive of me not terminating which I've sent learned is not a typical response. I've also been in touch with the DS community and just WOW. Everyone is super nice and just embraced us right away. I am finding it a bit difficult to find stuff on attachment parenting and DS.
GreenTea-Thank you for the update and congratulations on a seemingly healthy baby girl!! I am so glad your DH is excited! And her name is lovely mama! Our family has a fair amount of experience with DS and individuals with varying levels of ability as DH works within that community as a social worker and therapist, I truly believe that you have an amazing joy-filled journey ahead of you and the way you are embracing Jude is a testament to what a fantastic mama you are/will be!! I once read this amazing essay on what it was like to have a child with DS and thought I would share-it's called Welcome to Holland by Emily Perl Kingsley. Good luck mama and please keep us posted!
Greentea - what a roller coaster for sure! I have also been thinking about you and wondering how things were going. The fact that Jude has such a loving family is so great. I have a friend with a daughter with DS and she is such a wonderful soul! I too am an older mama 41. I have chosen a different path and haven't done any testing. I totally respect every mama's choice though. It was a very difficult path for me to choose. We did have our 20 week ultrasound last week - and often they can tell if there are signs of DS or other anomalies. Everything looked good to my untrained eye, but I haven't gotten the report from my midwife yet. I hope to get it today.
If you want to read uplifting books on DS, here are two more: Choosing Naia - a great one, but most of the book is about their choice with a lot of scientific information thrown in. A great book, but sometimes difficult to slog through the medical pieces for me (and I'm a midwife!). The other one Expecting Adam is a memoir about this woman's pregnancy. She is a very scientific factual sort of woman, who experience amazing magical unexplainable things during her pregnancy with Agam who has DS. I loved it. Both are very supportive of keeping and raising a baby with DS.
Hugs to you!
I am so glad you came to give us an update. I have really had you on my mind a lot since you posted that you had questionable results. I am SO happy to hear that all looks well with her heart! That is such a biggie with DS babies mama!
I am glad things have worked out with DH. He's a man, worrying about the practical concerns is how he's wired. This way only one of you has to worry about it.
I have to second the recommendation of the kellehampton.com blog. I came across her blog a few months ago. I went back to the beginning and read her birth story and bawled my eyes out. She is so real and raw with her feelings and all that she went through after the birth. It's so powerful.
I'm glad to hear you are finding support with other DS parents too. That kind of support has got to be priceless.
Thanks again. I do know of Hampton and while I was very moved by her birth story her blog doesn't do much for me. Her life is so so different from mine that I find it hard to relate. It just feels too glossy like a lifestyle magazine more than real life. I appreicate though that she just lives her life and that DS is just one aspect of it. There are tons of other blogs too. Right now I'm really loving Holly's House because Holly is kind of like me:P There's also one called "With a Little Moxie" that is just great. The mother has hearing loss so she writes about disabilities in general, and they do a lot of traveling.
I haven't read Expecting Adam but it's on my list. I'll add the other book. I'm reading a really good book right now called "Road Map to Holland." I'm also slowly buying more technical books as well. We're going to be a very busy household soon:)
You have a point there. I can see where you are coming from.
Congratulations on your beautiful girl with a perfect name! We had a woman at my LLL meeting last fall who was nursing her DS son at 10 months. She said it was a struggle in the beginning to work on his latch, especially when all the doctors were telling her that your couldn't breastfeed a child with downs and she should just switch to formula. She found a good Lactation Consultant and had great support from her family and at 10 months he had never had formula. She said it was definitely worth all the effort in the beginning. I'm sure you have a long and challenging, but also joy filled, road ahead of you, and I'm so glad you have already found a supportive community. :)
Congrats on a healthy baby girl! It's so normal to be excited and stressed about have a DS child. Finding others who have been through the same thing is such an important part of coping. I actually just read a study today about parents of special needs chlidren and I think it was an overwelming percentage of parents say it is very difficult raising a special needs child but that they enrich there lives so much it makes it all worth it. Hang in there and be sure to validate your worries, fears, disapointments, etc. It will help open to door to accepting this wonderful gift even if it will be a hard road to live. Lots of hugs and love to you and your family