Bela Girl

We were able to come home after the apt. They were a little unsure of what to do with her, there was talk of admitting her for IV nutrition so we could keep the NG out for a few days and let her nose heal, but we decided against it. Beth inserted her NG and then her nose bled for the next 45 minutes. She could see how bad it was. So she was put on flonase and zyrtec to try and stop the congetion and open up her airways so she can breathe and hopefully heal faster. I gave her one dose last night and the difference was huge. I put her down last night at 5:45 and she is STILL asleep at 9:30! She was so exhausted from not sleeping and she can fnially breathe! When I checked on her this morning she had no snot in her nose! You can still hear it when she breathes but if feels so nice to see her get some relief after 2 months. So we'll continue this for a few days and hopefully she'll fight through this virus she has and get over it quickly. I just got her RSV swab results a...

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 agai...

...That is how I'm feeling today. This weekend the cold that Bela has had since our last hopsital stay the day after Thanksgiving has all the sudden gotten a lot worse. She is just plain miserable. She is so junky, her nose is constantly full of yellow snot--so she can't breathe very well and her little lips and hands turn blue. She has a yucky cough, and worst of all, last night she spiked a fever.. Since she's had this cold we've watched for other symptoms like de-sating, fever, difficulty breathing, or vomiting and until today thankfully she's had none of them so we've been able to stay at home and try to get her well. But no matter what we've done she just coudln't kick it. And last night when she felt hot when I went in to get her I felt my heart sink.. So now we just wait and see what direction she goes. It has stayed right between 100-101, and if it goes above 101 we have to go to the hospital. It shouldn't be that big of a deal to g...

Here's a TON of pictures of the last month or so.. My mom has been asking me to put up pictures of Christmas since Christmas morning..sorry mom. Here they are.. Some random shots.. in some of these you'll notice the absence of the very annoying NG tube!! She has been able to have "NG vacations" as her cardiologist put it because she is now eating baby food pretty darn good. The vacations only last about 3/4s the day for now, but it is SO nice to not be 100% dependant on that thing. Whenever we take it out her congestion and cough go away and they come right back when it is put back in... :( Someday soon I hope to be rid of it, but she still has a ways to go because she WILL NOT take her liquids!! This is my bugger on his first day of PRIMARY!! I have a child in primary.. super wierd for me.. We came home on New Years Eve to this: She didn't want to miss out on ringing in the new year... It is the only night in the last 4 months she has woken up like that...

This is Tanner after several months of not posting. It has been a hard two days for a heart parent. One of my dearest friends from high school lost his 6 week old daughter Jersey yesterday. She was born with a heart defect but had severe lung and kidney issues. We love Chris and Heidi and ask all our friends and blog followers to pray for them this week.