Monday, January 19, 2009

Better Today

Thank you so much for your sweet, encouaraging comments, and for the suggestions about the G-tube. I think we are going to go ahead and do it, I feel that it is what is best for Bela at this point and the right thing to do. It is going to be very hard for me to hand her over again though, even for a small procedure compared to what she has been through. I am dreading sending her off with the surgoen, but I am really looking forward to life without an NG! Without the daily frusterations and pain that it involves. I can't wait to see all of her face and let her cheeks, nose, and throat heal. I can't wait for the enormous pressure I feel to get her to eat (and get the tube out) to be gone. Once the G-tube is healed it won't bother Bela at all, she won't even know it's there, so we'll be able to just take it at her pace. We'll still work hard at getting her to eat, but go as slowly as she needs it to be able to make eating a positive, enjoyable thing again, something she dosn't have to be afraid of. Now that I have made the decision I'm ready to go ahead with it, and I feel so much relief.
We've managed to stay out of the hospital...so far. Last night she was still burning up all night. In between motrin doses it got up to 102.5. With motrin it would linger around 100.8. She slept horribly and coudln't get comfortable.. When she woke up from her first nap around 10 she seemed a little better. She was at least perked up a little and could hold her head up. Her color looked much better today too. She still had a temp all day but it stayed around 99.8. I'm hoping for a better night tonight so she can rest. We started her on azythromycin yesterday and I hope that it helps. Her last antiobiotic did nothing, so if this is still viral it won't do anything for her. Her drs want to see her first thing tomorrow so we're going in for some tests and to see what her sats are. I finally turned my pulse oximeter monitor in a couple weeks ago and I don't like not knowing what her saturations are. I'm used to being able to check and it makes me so nervous. They're worried it's RSV... Oh I pray it's not!! It's just plain hard to have a sick baby, and when I know she's so fragile and weak already it's so scary. I wonder if it will always be like this, but I so hope not. I'll post after her apt tomorrow.. hopefully we'll come home.. :)

7 comments:

Erin said...

Hey there my friend just read all your updates...so sorry to hear the events of the last few days. I left you a message today as I had not seen you in church and now I know why. Poor Bela and she looked so good the other week when you guys walked by. Anyway, I am glad you have made a choice that you feel good about and that will hopefully take away some of the stress and pressure. I have friends with kids with G-tubes and it does help to get the liquids and nutrition in when they struggle eating. Their kids have done well with it and most have been able to start eating on their own and they are slowly working to get the tube removed. You just need to do what is best for Miss Bela. Well I look forward to seeing you tomorrow if all goes well...and our prayers will be with you for a good doc appt tomorrow. NO RSV...we have been down that path!

Amber said...

I am so glad that you feel such peace about your decision...RSV was my first thought last night...praying against it. Glad to see an update.

Auburn said...

It sounds like a good choice with the g-tube. I'm sure it feels better to be moving forward and having that positive feeling is probably comforting because you know that feeling comes from above!! I hope that your doc appointment goes well tomorrow!

angie said...

i hope everything goes well ave! stu and i have been praying for you and little bels ever since we heard sunday. i read a little bit about the new tube bela is getting and it sounds like it will be so good for her. i'm sure you read everything about it already, but i happened across a blog that you might like,

http://www.themomcrowd.com/tube-feeding-your-child

she talks about her baby girl who had a NG first and then they went for the G-tube. it's all pretty positive and seemed sort of similar to bela's situation, so i thought it might help you feel more comfortable. i hope you guys can come home soon! i don't have anything going on tomorrow if you want someone to watch bens, i bet we can even do a play date with my little brothers if he's up for it! let me know :)

lundgrenville said...

Oh Avery-

I pray that Bela doesnt have RSV.....my absolute worst fear for you...Lets just say that Grayci had RSV last year....and its a miracle she is still here.
Bela is very strong and she has a purpose here on this earth..She will be okay and I have faith that all will go well!
Although I didnt want to have an opinion in regards to the G-tube...I am confident that you made the right decision.
You are in our prayers!!
Hugs-

The Simmons Family said...

Way to make a decision! I think it's going to be the best for Ms. Bela. Hopefully she'll start eating and you won't have it too long.

We're praying for you today. Hopefully things are ok with Bela and she just has a bug. RSV would be just plain aweful. Does she get the synagsis shots? I thought they couldn't get it then... guess anything is possible!

Watching for an update.

Andrea

grandma debi said...

Hi Girtie, eu te amo muito. I couldn't be prouder of you (without being "prideful")! Bela and Benson are the luckiest to have you for their mommy, and I'm the luckiest to have you for my "filha". You are inspiring.