I looked back at a couple blog entries from December 2011. I knew absolutely nothing. I am still learning. However, I know mountains more now then 15 months ago. I didn't know how to correctly spell Gastroschisis, I didn't even know what exactly Arthrogryposis was. I was terrified of what was to come.
It seemed like eternity for Anabelle to join us. I remember having such mixed emotions. I couldn't wait to hold my baby girl. But no one could tell me how long I might have with her, or what to expect at all. I knew that she was ok while still in my belly, but how would she be outside?! It was terrifying. And then the day came. March 1, 2012. Such a roller coaster day. I was so out of it because of all the lovely pain killers they gave me. I remember when I finally got to see her, and tried to ask, 'How is she doing?', I'm sure it came out as 'Keolnlsdu aslkdnfo uoasdnl'. Or at least that's how it felt by the stares I got.
Now were just shy of a year later. If you told me we'd be here be a year ago, I'd probably laugh in your face. I didn't even want to think this far into the future. It was because the doctors didn't think that Anabelle was as amazing as she is. I couldn't imagine life without her.
I won't lie though. It hasn't been all rainbows and unicorns. The beginning was rough. Really rough. Thankfully we have had amazing support. Not only from our family and friends, but from total strangers. We have been blessed to meet tons of other families online who have years of experience. I'm not sure we'd be as strong of a family now if we didn't have this support. It's a group of people who have already been there, done that. They have encouraged us to do what we think is best, as well as offer up some well learned tips. We have only meet a few of the families in person, but I don't feel like they are strangers. With them this road isn't so rough. It's so wonderful to have questions and have tons of people to turn to for advice.
When I think about how far Anabelle has come, I am overcome with joy. From doctors telling us that she'd never do anything, to today, where she sat for hours and played with her sisters and laughed her head off. But that's a mix of emotions. Doctors don't know everything. And some people think what they say is stone. And to me that is terrifying. Because sometimes they are wrong. Like they were with my wonderful baby. They told me to consider my options. The genetic counselor we were working with during that time push our 'options' on us. During our most fragile time. Just hurts to think that these people can influence families to make these life changing choices and take their wonderful babies away from them. I am so thankful we didn't listen to those doctors. Don't get me wrong, they were nice during our care, but... only after we made them understand our feelings. That this is our baby, and a diagnosis, or lack thereof, doesn't change that.
Today I tried to do a photo shot of the girls for their birthdays. Spring time in the Polk household is Birthday season! Four out of five members celebrate. Today was primarily for Anabelle's birthday. It is just wonderful to have all of them home, together, healthy and happy (mostly).
(And yes, we are that family who does matching outfits for pictures)
She is a natural!
Hanging out upside down! Loves it because it allows her to move her arms :)
Time for all three!
She's not sure about this pose...
And...she's done!
Not even a wardrobe change and her animals could salvage this shot
She was so tired from sitting for so long, she took a nap from about 3 to 6, and then woke up for about an hour, and slept since. I guess a photo shot is a great way to knock her out :) Good thing, because this one didn't turn out as I planned or wanted exactly. Which just means another great night of sleeping for the parents!
Thanks to everyone for EVERYTHING. Everything has gotten us to this this point, and I am so thankful.
More to come.
With love,
The Polks
Ahhh...so very cute. And I'm so proud to be Grammy to all my grandkids!
ReplyDeleteHi!
ReplyDeleteFirst of all I want to say that your kids are GORGEOUS!!!
I was searching for Arthrogryposis when I came across of your blog.
I recently had a baby, actually she was born last December 14, 2012 but we were unable to bring her home 3 months after. Just like you we were told by the Dr. that they found something wrong with Her from the ultrasound. We were also told that she might not make it till my due date which December 12th or if she does make it, that she will not survive outside. 6 months later and lots of testing and dr.'s appt And praying, Elizabeth
is doing good.
Let me tell you a litlle bit something about her. She was Also diagnosis with arthrogryposis. She have a left club foot, But now wearing boots and bar after 9 weeks of casting to correct her foot. Also in g-tube (ng tube for the first 2 1/2 months) since she was not allowed to feed thru her amount On her 2nd day, because she can't swallow. Currently on omeprazolye Medication for her acid reflux. Get a weekly visit from nurse to check her lungs and vital. Has an OT 3x times a week, who also come to our house.
All I want to say is that YOU are such good mom. Annabelle is lucky to have you. I'm so amazed how you managed to do all that and look after your family. I hope I can be As strong and focused like you. I'm sure What I had experienced right now is just a pinch compare to yours.
I know that our babies will get better. I know that they are tough and strong and they going to fight. Look how
Much Annabelle have changed already. She such an amazing girl.
I hope you continue to write about her and her progress. You are an inspiration to all the moms out threre who are also experiencing the same.
Thank you for giving us hope!
Take care.
Hi!!! Thank you so much for your kind words! I'm so sorry I haven't updated lately. It's been very busy around here :)
ReplyDeleteI would love to chat more with you! I am part of a wonderful non-profit AMC community! There are AMC'ers, parents, grandparents, siblings, etc.. It's been wonderful. I'd love to share with you if you're not yet. The site is amcsupport.org. They're multiple Facebook groups too.
I would love to just catch up and share too. It's always nice knowing you're not alone.
Again, thank you for your kind words. You are an amazing mommy too! You know how some days wear on you more than others, but you also know there is light at the end of the tunnel. Oh, and most moms will tell you.. The first year is the hardest!! Elizabeth is special to have you as her mommy :)
Glad to hear from you! I hope all is well with you and your family. How's Annabelle doing?
ReplyDeleteSorry I've been slacking!! Anabelle is doing good. I'm going to start posting more frequently, sorry. How is Elizabeth doing? And you?
ReplyDeleteElizabeth is doing good. She will be turning one next month. I can't believe how time flies. :) hope you don't mind if ask how she's doing in terms of feeding. Is she still in tube? Elizabeth still in tube but I'm still hoping that one day that she will able to eat normal (by mouth) :)
ReplyDeleteHappy belated birthday! I will be posting an update today! With her becoming more mobile, our days have become increasingly busier! I thought it was crazy before...
DeleteIn short; Ana is still tube feed. She has a swallow study last June and is still at moderate to severe risk for aspiration. We just had a follow up with her speech therapist. She allowed us to continue giving tastes, with increased amounts being eaten. She's allowed to have the quick dissolving yogurt chips, and LOVES them. We need to moderate her intake as she still can aspirate.