This is it, the best two pictures out of 37!! A few days ago, Callie tried to pick up Gracie when Tom and I were out of the room and somehow got her feeding tube pulled out. She needed new little stickers for her oxygen so I thought I would take the opportunity to snap a few photos 'tubeless'. However, she was fussy and it didn't work out to well. Her cheeks look chubbier without the tubes and I hope her nostrils go back to normal someday!! The home health nurse said they would. I walked all around the house with her just because I could. It almost made me cry, being able to just walk unattached and free with my baby, what a thought. In the last week I have replaced her feeding tube twice and had to push it back in another 3 times. I'm becoming a pro and Gracie seems to get better about it every time. Gracie has had a pretty good week. She is still throwing up a fair amount though. I am still feeding her every two hours for an hour and continuous at night. She seems to not like her Zantac and Enalapril medicine. Those two seem to go right down and come right back up. I talked to the pharmacist at PCMC and will try to tweak a few things this week with her meds.
She is gaining weight but very slowly. She now weighs 10 lbs. 13 oz. she has gained about 1 1/2 ounces a week for the last two weeks. A normal baby gains anywhere between 3-6 ounces in a week. My pediatrician is concerned about her coughing and said that it is just not normal for babies to cough and gag. It's really frustrating though because Ear, Nose and Throat went down and checked things out twice and did not see anything wrong. My ped thinks it could possibly be a side effect of the Enalapril. Otherwise it is probably her reflux and he is concerned that she is aspirating into her lungs a little bit with each cough and that is not good. I am going to talk to cardiology tomorrow and ask them about it.
Other than that, Gracie is smiling a lot more now which is really fun. Thanks again for all of your comments of support!!
17 comments:
Beautiful pictures! She is a precious little girl and lucky to have the family she does. I hope you find out about her coughing and gagging. It would be nice to have one less thing to worry about. How fun that she is smiling more. Can't wait to see a picture. Love you, Susan
WOW! I have never seen her without tubes! SO cute. Someday soon you will be able to walk with her around the house and take her wherever you want. You will look back on these day and wonder how you did it all. You are doing a great job!
What a treat to see her "tubeless" and to walk around with her! Little things can mean so much! She is so darling.
I Hope they can figure out how to help her with the gagging and coughing.
I have been checking and worring with no updates and when I looked today and saw her Tubeless I just SMILED:-)
She is simply BEAUTIFUL!!!
Praying for you.
I remember so vividly about being able to walk around with Nevaeh "tubeless!" It is such a wonderful feeling. I think I even cried a couple of times myself just because of the "normalcy" that it gave me to do that!
As for the nostrils... they will go back down. Vaeh had an NG or NJ tube for nearly 10 months & her's both went down. Just takes a little time:0)
On the coughing front... if Gracie has been diagnosed with reflux (GERD), coughing is VERY normal. Matter of fact, when I researched it after Vaeh was diagnosed coughing was mentioned quite often. The gagging... has your pediatrician ever had a tube down his/ her nose running the back of the throat?!? Of course she's going to gag! I don't know a kid with one that doesn't. Vaeh has a very hyper gag now. So from one mom to another with feeding tube issues, all sounds like normal stuff from our experience! Sorry I got wordy, but hope it helps!
Tina & Vaeh:0)
http://nevaehkaylenewalp.blogspot.com/
She's a beauty, that's for sure. I see a future Miss America in the works! You are an awesome mom! I admire you so much.
I remember how amazing it was to be able to carry my tube free baby around the first few times as well. What an awesome feeling! I started taking everything off her face once a week, to replace the feeding tube, O2 stickers, etc., and so I would use the opportunity to give her a bath, take pictures, dance with her, and parade her around the house like nobody’s business. I would also try to give her a bottle without the feeding tube as well (she would drink more without the tube in the back of her throat).
Also, I don’t know if you are already doing this, but we used to motor Carla around the house in a stroller - throw the O2 tank in the back and that way we didn’t have to drag the darned thing around by hand, it made life a LOT easier.
I’m glad Gracie is improving, our family will continue to pray for yours. What a beautiful daughter you have :)
Jen Wright
She's so cute with or without the tubes. Marci was so excited to see her smile the other day. She also organized her spice cupboard after seeing yours. Maybe I'll get to that one day this week. I want to see a picture of yours!
I just find it super hard to believe that Gracie could even take a picture that wasn't perfect! She is the cutest little thing and I just want to squeeze those chubby cheeks! Isn't it wonderful without tubes (at least for a few minutes)? I am sure you've become quite the master with them though. I would push Annabelle's rolling stand all around while she was on a feed just to make myself feel like we were going somewhere...although it was usually best just to sit still and not move so she'd have a better chance of keeping the milk down. I am sure you follow...
Thanks for the beautiful pictures! She is so precious!
Heart hugs & prayers~ Rebecca
The pics look great and her scratches seem to be healing too! What a cutie! As always, thanks for the update and she continues to be in our prayers! (As do you!)
Wow! Gracie looks great! How fun to see her without the tubes. She is such a little cutie! I loved getting to "tend" her the other day. Her smile is the cutest and you can really see her fiesty little personality show through. Love it! And it was fun to hang out. Thanks for the recipes too - I tried the Steak House Potatoes yesterday - awesome!
I just did the tubless pics with Owen last week and he looked like a different baby! Gracie is ADORABLE and I love that i'm not the only one that takes 30 some pictures to find two good ones :).
Her feeding issues sound EXACTLY like Owen once again. He still gags and coughs and I just feel aweful for him.
Can't wait to see some smiley pics...she really looks fantastic!!
Andrea
She's darling... next time you have her tubes off (on purpose) call me and we can do a little photo shoot. She's darling, anything of her is perfect. Our thoughts and prayers are with you! XOXOX
Shana
She's so beautiful.
Love those cheeks!
2 out of 37! Well seems like she is a perfectly normal baby!! It sure is crazy how such cute babies can be difficult to photograph!
She is beautiful and growing up!
Wow - what beautiful pictures. To see your sweet girlie without all the mechanics and plastic made me want to cry. She is such a special spirit.
Oh my gosh! What a beauty - I can't imagine how you must feel after all this time to hold your angel "unattached" and kiss those darling cheeks! I can't wait to see her on Monday..looking forward to it! Love ya! Lisa
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