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!
My beautiful niece Lacey, visiting from Florida got to meet Arina!
My tiny dancers with some serious bedhead!
Uh oh, look what sister found!!
True love!
Oh gorgeous - I love that last photo. Is it possible for her to have a fundoplication so she can still eat but can't aspirate? I know it means a surgery, but it could also mean a more 'normal' life in that she could enjoy food like her big brothers. Just a thought.
ReplyDeleteScratch that last comment (except for the cuteness part) I just realised she is not reflux aspirating, but getting the food in her lungs while it is on its way down so a fundo won't help.
ReplyDeleteHmmmm....dilemma.
those two are going to gang up on you!!!!!!!
ReplyDeleteToo cute, love the one where she is chewing the tube!
ReplyDeleteI am sure that you will find peace in whatever you choose. Arina is just to BEAUTIFUL Lacey!! I LOVE these pics of Arina & Jax.......makes my heart smile=)
ReplyDeleteAnd yay for family visits!! Look at all that LOVE.....*sigh*!!
Oh she is too cute! Loving the pictures. Keep posting them. Not sure what to say about the tube situation. I can totally understand your want for normalcy. Hopefully your ped with have some ideas of things you can try before just going straight to the tube.
ReplyDeleteWhen did you get her ears pierced. It's adorable
ReplyDeletebeautiful pictures, love seeing Jax and his new sister together.
ReplyDeleteLove love love the two little ones sitting side by side in the big chair. They sooo look like they belong to each other. LOVE adoption!
ReplyDeleteLacey: I look at her and just cry! I am so thankful that you rescued her! She is just absolutely adorable!
ReplyDeleteOh aspiration is so scary! they can stop breathing from it, that really sucks that thickening didn't help. I will keep praying for a solution. The tube chewing is cute! hehehe I thought so with Libby until her oxygen machine started buzzing constantly because she bit holes through it lol. Goodluck Lacey. Cute piccys.
ReplyDeleteI would be torn about the tube too :( praying for answers soon! She is so precious!f
ReplyDeleteAre Arina's ears pierced? They look like it in some pictures but not in others.
ReplyDeleteOh little Arina has found brother's toobie! She is CUTE! And that Jax boy gets cuter in every picture! You sure are having fun dressing that little girl up! And I assume her big brothers must be spoiling her just the way she deserves! Haha
ReplyDeleteOh little Arina has found brother's toobie! She is CUTE! And that Jax boy gets cuter in every picture! You sure are having fun dressing that little girl up! And I assume her big brothers must be spoiling her just the way she deserves! Haha
ReplyDeleteDid they test her with purees? Could you maybe do spoon feeding with thicker stuff, and liquid through the tube? I know it stinks, but you also know it is not the end of the world, and it quickly fades to the background. As far as loosing oral ground, if you could table feed her that would be awesome. You know, enough to keep her interested, but not thin enough to hurt her. She is not that far away (age-wise) from being able to do a chew and swallow, so maybe that will help. Good luck sweetie, not what you wanted to hear, but you sure nailed it from what she sounded like. Gotta protect those lungs!
ReplyDeleteGosh I'm totally illiterate when it comes to medical stuff...just seems such a waste to take away eating when she knows how to, to take away taste, but then again like I said I know nothin on this.
ReplyDeleteAll I know is that these are some seriously cute pictures, I love love the last one where she is really checking out her brother. Oh I love all of them the 2 of them sitting on the couch together, they are so sweet. I love that she is home with you guys, it must be such an amazing feeling, you guys have a thrilling journey ahead with her...and btw I can't get enough of pictures, been checking constantly for new ones. So keep clicking away!
Arina is so lucky to have you as her mommy.Things will work out,just as they should,I just know it.And I too,just realized,that when we talked I mentioned the wrap but was forgetting that it was on the way down that is the problem.I just know,in the end you will do what is best.you always do.
ReplyDeleteI love her earrings and I loved getting to hear her coo over the phone!
I love the pictures of Arina and Jax interacting. They both seem to be enjoying the interaction. From the video I saw of Jax with his Daddy, I can tell that even though he is very delayed, he knows how to SMILE, play (even if it is simple gazing games rather than complex play), and love, and will benefit from having a little sister to play with. I am in the process of applying to graduate school in educational psychology/special education. One of my research interests is helping individuals with profound cognitive delays communicate their needs and gain more control over their environment. I see a lot of potential in children like Jax. Even if a child's greatest accomplishment is learning to smile, they have still learned a lot. I thought Arina was younger in the earlier videos, but now she is looking more like 13 months with her hair done up and little outfits. One of my little cousins (typically developing) used to do the "airplane" when he was a baby. His parents got so excited when he did it, that he eventually learned to "airplane" to get attention. Very cute.
ReplyDeletebeautiful niece!!! And those pics are adorable!!! best buds already!!!
ReplyDeleteI had such high hopes that her swallow study would turn out good! BOO!
ReplyDeleteDid she drink a bottle at the orphanage? If so, she is obviously tolerating it, otherwise her lungs would probably be a mess by now. Is there a way to spoon feed her enough calories, by thickening milk, etc.?
This would be such a tough one! I would have a hard time deciding what to do too! Hope it all comes together for you and she tolerates everything and stays HEALTHY!
LOVE, LOVE, LOVE the pics of her and Jax together! There are both so precious! You are so blessed! Love and Hugs!!!
Love the pics - especially the last one!
ReplyDeleteMaybe she can get some tube feedings for a while, but still have a few bites of food each day. That way she won't lose her love for it, but still won't be eating enough to aspirate too much.
Oh those pictures just warmed my heart! SO SWEET!
ReplyDeleteSo much cuteness!
ReplyDeleteShe's a doll! Those photo's are priceless. I see you already had her ears pierced. You are getting right into this little girl thing aren't you?!
ReplyDeleteDid you already run out and get her little ears pierced? She is just so adorable and I'm so jealous of all the girly things you get to do to her! Love, love, love the pics of her and Jax. You are just in so much trouble with these two troublemakers! You are one smart chickie and I know that you will make the best decision for little Arina and her aspirating issues.
ReplyDeleteI have fell so far behind on my blog reading that I totally missed that you had adopted a beautiful baby girl...congratulations! My Emily also aspirated on nectar during the swallow study and is now on Honey thickener...she wouldn't drink it the first couple of days because it's pretty hard to get through the straws so we tried a few different cups. She now uses the playtex straw cup and the take and toss straw cups and those seem to be easiest. I agree with you why give her a toobie when she might just need a little bit of practice first.
ReplyDeleteLOVE the pics. Sorry to hear she's aspirating on just about everything!!! I know you have a tough decision ahead. I'm thinking of you.
ReplyDeleteI adore these pictures of them together!!
ReplyDeleteI love the pictures of the 2 littles together! And Claire loves tubing too. I think it is her favorite toy.
ReplyDelete