Thursday, November 11, 2010

Lots to talk about!

Lots to talk about today.
Its been a long week, appointments every day. Most were appointments that were planned before Arina came home, some were hers. I don't think I've sat down once since Monday!
First the better appointments. Jax went to trach/vent clinic on Wednesday. He's doing good from a trach standpoint. Its clear he needed that trach, and needed the vent even more. Respiratory-wise, he's doing good! Our beloved Kris gave us some new, great attachments to make life easier with the vent. I hate the attachment that has the suction on it. It just gets in his face, and I don't use that suction anyway. This new blue one swivels, so if he turns, it turns with him. We've used it one night, and we love it already!
The new


The old


Also, he weighed over 25 lbs at the clinic appointment. I immediately called Lisa and told her we need to figure out what is going on with this puffiness. He has weighed on average 22 to 23 lbs probably for the last two years. He just doesn't gain weight good. Now all the sudden he's jumped to 25, and its all in his face and chest. So the plan with him is to get an MRI of his neck and chest. That is the least invasive way to see if he has any new clots, or if his SVC is narrowed off again. I need to call and get that scheduled.

Now on to the princess. We've been deciding what to do with this girl and her aspiration issues. My ped talked to one of the top speech therapists in the state, and she doesn't think we can get by without the tube. We will talk in depth tomorrow with her about what to do, but I think we are going to do a g-tube. The speech therapist said that it will take her at least a year of hard work to get her oral skills where they need to be before she can take liquids. An NG is not feasible for that long. Plus, there are a million reasons not to do the NG. They cause ear infections in our tiny DS ears, they cause oral aversion just for the fact that they can feel that tube down their throat. The g-tube is just the best option for now.
I'm really struggling with this. Although we knew adopting a DS child, that these things come with it. We just hoped that we would not have to deal with this with her. Really, its not a big deal. Its something so easy and fixable, and not permanent. Its just that we are having so much fun feeding her bottles. We are not sure right now what she can take by mouth. We are hoping to keep feeding her baby food, and just tube the liquid. Speech therapist also said that we can't thicken all her liquids as thick as she would need it. She needs to get some free water. Ultimately we will do another, more in depth swallow study to see exactly what we can continue to feed our princess orally. But I'm really sad about this!
I don't know if it freaks me out because I find we are going down Jax path. Although I know that is ridiculous! She will continue to grow and do motor skills with a feeding tube, I'm just freaking out I think!
Plus, she woke up with a fever this morning, and has had it all day. If this turns out to be pneumonia, then we know this toobie is needed.
I do think Jax see's his new sister. I find him looking at her when they are on the floor together. She has only made him cry once so far, and I found spit up on his head, so I would cry too if my baby sister barfed on my head!!




23 comments:

Suzie said...

Come on Jax what's a little barf! Those two are the sweetest pair!

Rochelle said...

Those two are super cute together. So sorry to hear about the feeding issues with her. Praying she doesn't have pneumonia.

Jessica said...

I love these kiddos! Thats an awsome new peice for Jaxson's trach! You should sched a FEES, I have had great luck with Jonah and the FEES study!

EN said...

What cuties in their matching jammies! Best wishes that your little princess has easy problems to fix. I will say some prayers for both of them - they are the essence of all things beautiful.

Heather said...

Congratulations on having sweet Arina home with you. She sure seems to be fitting right in! What a sweetheart. Hope you can get her feeding problems figured out really quick!

Tina said...

Love love the pictures, these 2 are so sweet together, so funny how Jax is looking at her from the corner of his eyes as if to say, oh it's you again, now be careful where you spit!

It's a bit disappointing about the tube etc. I guess if it's going to help her then that might just be what to do, if she can still eat other things with her mouth that would be great, doesn't get her totally out of practice of eating, and don't worry she will be doing all the other stuff, this little girl is going to thrive feeding tube or not. Love the matching his and hers outfits.

Denise said...

I lOVE all the pictures. Are you prepared to be asked by EVERYONE if they are twins!!! So, I am completely confused by this whole feeding thing. I understand if there is an issue with aspirating and pnuemonia etc. But I don't understand how her continuing to drink from the bottle hurts her speech in the future.

Meghann said...

You're doing great! Your kids are beautiful!

Alison said...

What a pair of cuties!!

The Fluck Family said...

you have a lot on your plate and even adding a "small" thing to it makes it heavier. you are handling things great...your little princess is going to be fine! :)

Holly W said...

they are too cute together!
Good luck with the swallow studies..I know all this sucks, though in the long run it's not a super big deal, but still sucks nonetheless...

Becca said...

She's going to be just FINE, Lacey!! :-) A few hiccups along the road, but she'll hold her own, I'm sure. I love these photos with the matching jammies! Cute, cute, cute.

ANewKindOfPerfect said...

Okay, these two in their matching fuzzy jammies made me cry. They are both so freaking cute, I cannot wait to hold them both in a few weeks!!!

Chromosomally Enhanced said...

SO CuTE! REALLY!! SWEET...thinking about you...cannot imagine how busy you are..smiles

Mama Mason-Mann said...

Lacey, I'm so sorry you're hvaing to deal with the feeding stuff! Of course there's no one better to care for her and whatever she may need, but I'm sure this is still heartbreaking. You know it's not a BIG deal, but at the same time it IS a BIG deal. She's your baby and you don't want her to have a tube. It's okay to feel sad about it. But in the end, I know everything will work out. Chloe just had her g-tube site closed up and is feeding on her own (food AND liquid bottles). She didn't aspirate on her swallow study, but she sure looked like she was and she got to the point where she stopped taking liquid to protect herself. After a year and a half with a g-tube she still took to a bottle again and eating and is now 100% oral fed. So don't lose hope. Your baby girl may need a little extra help right now, but she'll come around. Love and hugs to you all!!!! btw - love the pics of Jax and Arina.

ParkerMama said...

We ADORE Kris too.

Serious adoration.

Have you asked about having a FEES done for your Princess? They can see SO much more of what is going on. Parker should have had a FEES rather than just the swallow study. The swallow didn't show one teen bit of his aspiration issues. sigh.

Carmen said...

Hey there just wanted to offer you some advice from one DS mommy to another. My 5 year old son who has DS also aspirates on any liquid not thickened to yogurt/pudding like consistency. We have avoided the tube for 4 years now and he's doing very well...if you'd like some help or have questions my email is cymorales@gmail.com :)

Tia said...

I'm so sorry the tube's needed. I don't need to sell you the benefits; you're as up on them as I am (both my girls have them). I do hope though that even with it you may be able to continue to give her thickened formula through the bottle. Even if it's just half an ounce or so that babytime cuddle is something I'm sure you've been dreaming of these past few years.

If it helps, my youngest has had a tube for years. But, once she developed enough that she could understand speech, we were able to do some intensive feeding therapy with her. And whilst she was on purees for several years she now eats whatever I eat. And is currently learning to drink more safely too. I hope that's your experience too.

And what a beautiful pair they make!
Tia

The VW's said...

Those pics of your angels in matching pj's are PRICELESS!!! You have way too much cuteness going on at your house! Big Hugs!!!

Melissa M said...

I would cry if someone puked on my head too!

Sorry about the feeding issues. I would be bummed too.

Denise sent me a message and said you all were going to be in her area over Thanksgiving. We will be there too over the weekend and would love to see you all if we can work it out!

Colleen said...

That's a cool attachment you got for the vent. I'm sorry to hear that your girl might need a feeding tube. If it helps her to not get pneuomonia though it will probably be worth it.

Linnea said...

I had a ? for ya. I see that you have a zipper jammies on Jax and his tube comes out...did you cut a hole? If so did you stitch it so it wouldnt get bigger or what? Our son has a mickey button and we have used button clothes so far but he has some zipper clothes but we thought we couldnt use them. Any advice on clothing would be great thanks so much.

be blessed
Ashlee
http://ourjourneytoadoption.beckfamily143.com/

Linnea said...

Lacey thanks so much! So the fleece I can just maybe cut and not sew? We adopted just our baby boy. Yes 4 gals and a boy, lol. Our gals wear your hair bows all the time, I took their minnie mouse ones and wear them lol. We just did Christmas pics with and 2 of the gals had the trees in their hair. Everyone loves them. TYSM! So cotton jammies will frey and I should sew but not fleece right? That would be great to wear some of those outfits.

Thanks!!
Be blessed

AShlee
http://ourjourneytoadoption.beckfamily143.com/