Welcome, Abigail Therese!

Abby, 3 days oldAbby in the hospital, 3 days old

We’ve had our little Abigail Therese with us now for two weeks. I went into the hospital for my scheduled C-section just in the very first stages of labor and she was born at 7:59 AM, February 5 — 7 lbs 11 oz, 20 inches long, with a headful of hair.  I was still on the operating table when one of the nurses told us that she was “suspicious for Down Syndrome.”

So, yes, Abby has Down Syndrome.  It’s been confirmed by genetic testing.  I am not sure she is “suspicious” for it, though.  She just seems like a baby to me.

It’s taken us a little while to process her diagnosis, though.  It came as a shock, because I’d had no prenatal testing and we were not expecting any complications. I had not had any problems with the pregnancy and at my one and only ultrasound, my doctor said, “Everything looks good! I don’t see any of the markers for age-related problems.”  Which I took to mean — Down Syndrome.  Turns out that Abby’s heart defect wouldn’t have shown up that early anyway.

She has two holes in her heart, one of which (a large VSD) is more serious than the other and may (probably will) require surgery.  The good news is that VSDs are relatively common heart defects and the surgery is fairly straight-forward with excellent recovery rates.  We are praying that the holes will close on their own.  (I am asking for the intercession of St. Therese and Our Lady of Lourdes if you’re Catholic and you’d like to pray with me.  If you’re not Catholic and you want to pray with me, we’d also welcome any prayers you’d like to send Abby’s way.) Abby sees her cardiologist next week, so we’ll know more then.

Abby, 1 weekOne week old

Otherwise… she’s doing all the things that babies do.  She’s nursing — with a little bit of difficulty.  She’s sleeping — a little too much.  So she’s having some trouble gaining weight.  But she seems to have avoided many of the immediate big and much scarier problems associated with DS, and for that we are very, very grateful.  She had no NICU time at all and came home with me in three days.  And we have had extraordinary support from family and friends.

So right now I am finding out all I can about Down Syndrome.  I am ashamed at how little I knew, and how much of what I thought I knew was based on outdated stereotypes.  I gravitate toward memoirs and blogs, because I want to know what daily life is like, especially for homeschoolers.  (I would love to find more Charlotte Mason-ish blogs that show what life is like for their kids with Down Syndrome.  I have been reading Kimberlee’s blog Pondered in My Heart forever, but going back and reading her posts about Eliza with different eyes was like opening a particularly hoped for Christmas present.  I have also found the blog Prone to Wander, which is new to me, but after that, my searches have no luck.  If you know of any other blogs I should be reading, would you please leave me a comment in the combox?)

Because my husband and a few of my kids don’t want real names to be used on the blog for reasons of privacy, I’ll be calling Abby  “Rose” from now on.  In the midst of everything, one of the things I hope most to do is to plant at least one rosebush for her out in the front flower bed this spring.  Every year we talk about how we want to plant roses, and every year spring slides by and we haven’t. I think Abby needs a rosebush.

 

Comments

  1. Abby is beautiful — the name suits her perfectly. :) I’ll be praying for her health challenges and for smooth solutions to her heart issues. And those are the two blogs I would have suggested to you, so I can’t help there. I hope you find lots of inspiration for the proper tending of your little Rose! 😉

  2. Continuing to pray for your beautiful girl! Good luck at the cardiologists next week.

  3. Welcome and congratulations to all of you! Deo Gratias! Your little Rose is beautiful! That first picture is stunning, she’s so pretty.
    I remember well those early days, trying to get sleepy baby to nurse…If you have questions or just want to ‘chat’ about any of it just shoot me an email. :-) It’s a lot to process along with all the normal postpartum stuff, especially as you were surprised. I got a little teary eyed thinking of you going back and reading my posts on Eliza. (But I do that sometimes, just like this afternoon watching Eliza standing in the front row singing the Stabat Mater in Latin with all the other choristers…) 😉
    God bless!

  4. Such a beautiful baby girl and name! I will be praying for her health challenges.
    Cassie W. recently posted…Our Math Choices for 2015-2016My Profile

  5. Welcome to the world Abigail Therese {{}}xxx
    So pleased she has arrived:-) :-)
    Did all go well with your Caesar and healing this time?

    I can imagine this has been a shock to process, totally understand you throwing yourself into learning all you can :-)
    My nephew has Down Syndrome, we’ve just celebrated his 21st, and a friend’s daughter also does and she is also now 21. Certainly it’s not a ‘one size fits all’.
    One of my favourite Kimberlee’s posts about Eliza was the milk lid letter post :-)

    Mmm don’t know of any CM blogs but found this list and there are lots of large families there!
    http://www.kwikmed.org/33-syndrome-blogs/
    The first one Kelle Hampton I followed her on instagram for a time, beautiful photos

    Will pray for Abby’s heart to close. {{}} Thinking and praying for you all. Enjoy your babymoon xxx
    Erin recently posted…My Daybook: February 17th, 2016My Profile

  6. Oh and meant to say that I just love the first picture in particular, frame worthy. So adorable.
    Erin recently posted…My Daybook: February 17th, 2016My Profile

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