I need to decide what to do with this blog. Do I want to keep it or just post on my family blog now that our princess is home. There is definitely more pics and stuff on the family blog.
Today Arina had an ENT appointment and a swallow study.
First, the good news.. although her nasal airway is extremely small, he thinks its ok to try and sedate her without general anesthesia. Of course they'll be ready if she tries to pull anything, after all, she does have that extra chromosome that screams naughtiness!
The bad news.. she aspirates just about everything you put in her mouth! She aspirated nectar thick. They tried honey, but she just cried because she couldn't suck it out. They wanted to put an NJ down right then. I called my ped, and she wants to consult a few people before going forward with a tube. We hate to take a baby that is eating great, and create an oral aversion by taking her food away. And since we've only had her a week, we don't know if she gets frequent pneumonia from aspirating.
I'm torn, on one hand, I am the one that said she needed a swallow study. She sounds horrible when she eats, and super junky afterwards. On the other hand, I am enjoying feeding a baby again, and although we knew when we adopted another DS child, that these things can happen, I really don't want a tube for her! So the next couple of days will be some real soul searching on what to do for our princess!
Also, I want to get a double stroller, but I'm torn as to which kind to buy. I was leaning toward the jogging ones, they seem to be the lightest. Any double stroller is going to be bulky, but the front and back ones seem heavy and hard to handle. Also, I need to find one that will have room for all Jax equipment. Any ideas would be greatly appreciated if you have one you really like!
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Best of luck deciding what to do about the feeding tube. I can definitely understand why you wouldn't be quick to get one for her.
ReplyDeleteAs for the blog, perhaps just link it on your family blog so that people can read about your journey to bring her home, and then continue to put all new posts just on your family blog. Just a thought!
Kayla
http://bebrandnew.blogspot.com
We have a combi and it folds up and then up again. It is super light and you can carry it on your shoulder. We love it although we havent had much success if we need to feed Noah in it with his mickey button. He has to have a ferral valve bag and it just goes from the feeding bag to that bc they arent high enough. Otherwise it would be the perfect stroller.
ReplyDeleteAlso Arina and Jax look exactly alike! And I dont mean bc they have DS, they really look alike. They were meant to be brother and sister!
Be blessed
I always assumed you would move everything to your family blog once she was home, but you know what they say about assuming... :)
ReplyDeleteThe swallow study stuff isn't fun. We had to do that with Claire, but at least she doesn't aspirate too much. I would have had a hard time with a tube too.
BOB jogging strollers are the best :) Lib was 4 1/2 and there was tons of room for her to still grow. All my friends and family use BOBs, they sale at REI. But I have no clue about the space, because Lib I don't think had as much stuff as Jax. Goodluck on your search.
ReplyDeleteI like what Teacher Girl said about linking the blog and I liked what Linnea said about Jax and Arina looking a like!
ReplyDeleteI already commented on how much I thought she looked like you :-)
Love the pictures those two will be best buds!
LOVE the two of them together:) I hate double strollers, but they can be so handy. Last time I used one was more then 15 years ago and it was like an two cheap umbralla strollers stuck together, it was too wide to fit through doorways, and the wheels did not turn so you could pull it through sideways, so it was such a pain. I know you can get large joggers, which would be great for you little guy, as he would be a long time user, and I have seen them with extra room to place feeding pumps, suction machines, etc... Good luck with that! I did want to chime in about feeding studies. These can vary by the day, to a degree. If she is asperating that badly, then she is asperating regardless, but it is very likely that if she is not currently super sick from this that with help from a SLP she will not need a feeding tube long term. Always remember that they can EASILY be removed, so agreeing to one is not giving up on her. What a horrible thing to have to deal with right now. She is super cute, and I am so happy for you guys:)
ReplyDeleteHi Lacey, I popped over from Mallory and Peach, just wanted to say your babies are beautiful! And I think you and your husband are amazing people and your children are blessed to have you, and vice versa!! I look forward to watching Makayla's progress, it must be a bit scary for you, and her, to go through all this. Thank goodness you got her home!! Take care. Christina
ReplyDeleteMight she just need to thicken her liquids with a little rice cereal. That is what we have done with our Ricky from about 8 months. And for Stas, she aspirates a little but not enough that I am doing anything about it. No illnesses and it clears well. We do Vital Stim to help with Ricky's swallowing....
ReplyDeleteBlessings.
Gretchen
Hi Lacey,
ReplyDeleteI like our double stroller but I have no idea of the name brand since we bought it in Kyiv. It is the long one-behind-the-other type, but it has a super big bucket under it for lots of stuff. It is pretty easy for me to handle but honestly I don't take them all out much without my hubby anyway...
I love the pics of Arina and Jax together. Wait till you see how much joy they will bring each other.
So Arina is an aspirator and Autumn is a puker. Makes me wonder how they managed to feed them over there, lol. Autumn never smelled like puke when we visited with her and now I am changing clothes and bibs multiple times a day and she still is icky.
Hi Lacey. I'm a new Mom just starting out on this lifes journey with my baby Chloe (4months with Ds). I just lost myself for at least 3 hours in your blogs. You and your family are a true inspiration to me. I have gained so much strength from you today. I have put you as #1 in my favorites and will check back everyday to see those beautiful babies of yours! May God continue to bless you for doing his work...
ReplyDeleteOh Lacey ... these pictures melt my heart!! Those two precious babes look like natural born siblings. They were MEANT TO BE! :)
ReplyDeletewe have a bumbleride double jogger and LOVE it! it folds down easier than other double joggers and steers VERY well.
ReplyDeleteso sorry to hear that arina is aspirating when she eats but if she is eating and has no aversions it seems like hopefully a feeding specialist might be able to help her avoid having a tube placed??? i hope so!!!! good luck with figuring out how to help her with eating safely!!!!!! can she safely eat yogurt - we thicken whitney's milk with whole milk yogurt (the thick fattening kind) just an idea :)