Thank You

I just got back from watching the Texans game with my family.


Go Texans!!!
~20 weeks 4 days~

It was big fun and not just because we won 😉
My husband’s voice is now hoarse from excited yelling and I am stuffed full of football party foods. I ate a bunch of cornbread with honey hoping the sugar would get baby moving around, but he wouldn’t cooperate as usual (he started moving after we left!). haha My mom and meme sat on the floor with me rubbing my tummy trying to feel him. He was shy but gave a few little kicks.

We chatted about, well, just stuff. Then we spent the rest of the time talking about DS and our excitement to meet baby (thank you to my new friends who sent me some awesome resources…I have already begun a very big list of questions!).
What I want to say at this point is that I am simply blown away by the number of people who have reached out to us. Not just personally or even on my FB…but the out-pouring of love from people I don’t even know. My blog has had more activity than almost ever because of the complete strangers who have reached out to love on us.
We certainly are not alone. God is showing us His unconditional love through the support of everyone our unborn son has already touched.

Some new questions:
-What is the risk of stillbirth?? I’ve suddenly been seeing this word in my DS research and it scares me!
-Any suggestions for online groups? 🙂

Symptoms:
-Mild swelling in hands and feet when standing too long
-Map of blue veins now appears on the sides of my tummy!
-Sniffly nose
-Sore ab muscles and belly button (and he’s going to grow more!!)

Surprise:
I’m pretty sure we have decided on his name!! (And his siblings yet to come haha) But I don’t know if I am ready to reveal it yet. Barry feels 100% about the name. It hasn’t been on many of our lists, but we went a different direction once we found out his diagnosis. I don’t know if I just anticipated the name we liked best for a different child or if I feel that because of his diagnosis he deserves a different name. So I think I need to work through that part emotionally before I am ready to spill the beans.

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20 Replies to “Thank You”

  1. The risk of still birth scared me too but I don’t think it’s extremely high and you should have a pretty normal pregnancy. Bennett was actually my easiest and most comfortable pregnancy. I did have non-stress tests starting at 34 weeks because babies with DS can have issues more than other babies but all was fine. Also have you had a fetal echo? Definitely ask for one since the risk for heart defects is higher. Bennett had an AVSD (most common amongst our kiddos) and it was good to know and prepare for. He was very healthy at birth even with his heart defect and went to the regular nursery so a heart defect doesn’t always mean a sick baby. Of course he did have surgery a few months after.

    The best online group for DS that I’ve found is the baby center DS pregnancy group as well as baby center DS group. If you google it, it will come up. I lived on their while I was pregnant and visited the board where people already had their child-tons of information and a very loving and caring group.

    1. Thank you so much for that info- I will probably live on those boards too (considering how involved I got with other boards during our IVF haha).
      When we meet with my doc on Monday, I plan to ask him about the fetal echo. So far my high risk OB was unable to find any abnormalities with his heart, so that does look promising, although I know things can develop as we get further into the pregnancy.

      This pregnancy has been filled with anxiety and abnormalities! lol I hope he can be as easy as Bennett was 🙂

  2. I heard about your blog from a DS-connection. My son Joe is 8 1/2 years old. We have a photo blog that follows our family. I am wishing you the best as you plan for the arrival of your baby boy!

  3. One more thing: I imagine that someone has sent you the essay “Welcome to Holland.” In case they haven’t here is a video I made for Down Syndrome Day a couple of years ago. I have used it often when I have given community education talks. The one thing I always say to new parents of kids with down syndrome is that I wish I could go back in time I tell the me who received the diagnosis in 2003 that we would be happier than I could possibly know. In our journey over the past 8 years, we have rarely found “easy” but we have always found “good.”

    Here is the link: http://www.onetruemedia.com/shared?p=99eaf6ace6c9e1844f5bbd&skin_id=801&utm_source=otm&utm_medium=text_url

    Best wishes,

    Amy, mom to Emma and Joe

  4. We had one of our designer-genes-friend family over for dinner last night and we were laughing about the statistics. We both decided that you might as well not worry about all of the specific things that are “more likely” because, frankly, everything is more likely. BUT, with that being said, just because it’s more likely, doesn’t mean that it’s THAT much MORE likely. Like, instead of 1:6000 for something, it might be 1:6001, lol. There’s a book that our Down Syndrome Association sends to all new parents, and I’m not sure why. It’s called “Babies with Down Syndrome” and all it does is outline ALL of the possibilities. I thought it was my duty to read it when I was pregnant, and I really shouldn’t have bothered. There’s no point in worrying about things that you don’t even know if you’ll have to mess with. I’m an information monger, I’ll admit. But I think this is one time when you need to put that part of your brain to rest. You can read up on what life will be like. What toys to register for. Meet with other families. But I don’t think I’d waste my energy on knowing all of the potential issues, because, really, it doesn’t matter until you have to cross that bridge.

    SO, yes, there is an elevated risk for stillbirth/miscarriage. The first thing to know is that if you’ve made it this far, it’s HUGE. A lot of the miscarriage statistics are for the first trimester. Second, I’d talk with your OB and ask what it means for the rest of your pregnancy. Ask what his plan is for you for the next 20 weeks. We started monthly appointments with the Perinatologist (MFM), and then we were to start NSTs at about 34 weeks. And, like Adrienne said, make sure you ask for a fetal echo (usually around 24 weeks, I think- they have to be big enough to see the anatomy) if they haven’t scheduled one already. With all that, your little one should be very closely watched (this is, by the way, the BIGGEST benefit of knowing beforehand- the stillbirth rate is SO MUCH LESS because they’re actively watching!). The biggest thing is to trust your instincts. If you don’t feel like something isn’t right, get in with your OB. They should be willing to let you come in for an appointment at any time if you think something is up. Even if it’s for an NST (you can do those as early as about 30 weeks) just for reassurance. In the beginning, I felt like I was overreacting and that my OB was going to “hate” me, lol, but that’s what they’re there for. And that’s what you’re paying them for. Never hesitate to bug ’em! 🙂

    As far as online groups, I like the one at downsyndromejourney.forumotion.com. The kids are a little older, but they’re more positive there than some of the other forums. And they’re very caring an eager to answer questions for everyone. Also, there’s a newer-ish facebook page that’s not too bad; it’s harder to follow than the forums because of the format, but it seems like most of the kids on there are younger, and it’s fun to see all of the pictures. You have to be added to it, though, by someone already on. If you’d like, I can add you- just email me at aimeesbowlofcherries@gmail.com and let me know.

    1. Aimee,
      You are so right, I am an information monger as well….but I don’t want to worry myself for no reason. I just want to know what to look for and what to ask should the situation arise.
      My other huge fear- luekemia! I know, not even something I should be thinking about, but I am!! Especially since it is not recommended that babies with DS have their cord blood banked (that’s what I’ve read at least…) so it’s a concern. I just want to protect my little guy the best I can!! 🙂
      I PM’ed you also about the group 🙂

  5. I agree that the babies with medical complications do certainly excel and surpass their peers in areas too, around a setback here and there and sometimes tough situations for parents at first but it generally passes and these kids fly and THRIVE

    I read old postings of a blog that cited a 75% survival ratio after one year. I can’t find where that was. I would perhaps GUESS that more kids with DS might be born premature, often maybe due to heart or digestive complications (guessing again) but I hear plenty of stories of kids with low birth weights and premature and again–these kids ALSO often do great too.

    My thought/inspiration from within or above depending on your perspective and views along my own personal journey here (a path I was sure but not certain I was on beyond 2% odds as it was the amnio I refused to get that lead to the unprofessional comments I was trying my best to process) was this insight:

    A diagnosis is not a prognosis.

    We knew nothing about his contribution to this world and from the odds your son has already faced? I’d say – look out, we are ALL about to learn a lot from him.

    Hugs and peace and write down a few key thoughts on that

    – what to say and do book/blog (hug!!)
    – resources for extended family & friends (still looking here!! But downsyndromepregancy.com is developing a great one they say, yippee)

    -what info is best for the positive blood test result recipients?

  6. lol! i just noticed you have my name as my blog! it’s actually called I Just Love You and pudge and zippy are now pudge and biggie even though her blog address is the same. 🙂

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