Wednesday, June 18, 2008

No cath tomorrow...

I spent about 7 hours today at the hospital with both my kids by myself... Pretty sure I won't be doing that again anytime soon. It wasn't too bad for the first 6, but the last hour Benson was absolutley done with anything to do with the hospital, but Bela wasn't too sure she was ready for us to leave. She was wide awake and sorta fussy. She looked starving, so I asked the nurse if she could start her feeds early. Then I waited and waited some more. And then some more. I contemplated nursing but didn't want her to get too much all at once so I didn't. Meanwhile Benson is ripping off his shirt because he got a quarter sized wet spot from his juice on it and yelling 'get this off me mommy!' at the top of his lungs. So I take it off and he starts pulling on my legs saying I wanna go home, I wanna go home about 50 times. All the while I'm still waiting for her to bring the food in for Bela who was getting madder my the minute. Finally 15 minutes AFTER she was supposed to get fed in the first place she brings in some FROZEN milk to start thawing out. Normally I wouldn't be annoyed because the nurses have a lot going on at all times, but not today. Our nurse was just s-l-o-w. Anyway, it really was very nice most of the day to be with both of them. It's rare that I get to be with them both. We had a 'picnic' on the floor in Bela's room. She joined us on the floor in her bouncy seat and was loving being able to be part of the action and watch Benson do all his crazy moves. It was fun. Today was really the first day Bela took real notice to Benson and focused right on him like crazy. It's been almost a month since she was 'healthy' and at home, and up until a few days ago, she hasn't really focused on anyone. But not anymore...she is soo alert and loves to look right at people and give them huge smiles. She seems to have really realized that she's got some serious entertainment in her big brother. Benson thinks his sister is pretty neat too.. He tells most everyone that we meet, 'I have a baby Bela and she's at the hospital!' I'm sure people wonder about that, but he's pretty proud to talk about her. Everyone that comes in the room can't believe how great she looks and how far she has come. I got some great news today...she went up a good amount in weight last night, and so looking at her average weight gain over the last two weeks, she has gained an average of 40 grams a day! I know that dosn't mean much to most of you, but that is amazing weight gain for Bela!! If fact, her nurse was saying if she continued at that rate, she'd probably even have to go DOWN in calories!! As she was saying it she said, 'I can't even believe I'm saying that about Bela, but it's true!' So yeah for Bela! SHe feels and looks much heavier to me (I know, I know, she's still about the size of the average newborn, but she' growing!)
Also, Bela has most likely been bumped to Friday for her Cath. Her cardiologist (the one doing the cath) has been at a conference (on hybrid procedures :)) all week and dosn't get back til late tonight. Her ICU docs cancelled her cath for tomorrow because they think he might reevaluate doing a cath on her at all right now based on the great progress she has made. He was pretty adamant about doing one on her before he left, so chances are he won't change his mind and she'll still go on Friday, but he is going to meet with us tomorrow, assess her, and discuss it with us. So once again, change of plans with no new sure plans made. We should know more tomorrow.
Another good day and more good news. I got to dress Bela today, and actually got to take her out of her room for some walks around the unit...it was great. We were moved a couple days ago to the 'healthy' side of the unit. We've never ever been there before, so it was nice to know that we've finally been considered 'healthy' (all relative). We have spent most of our time in the complete opposite corner, so that was a welcomed change. I love days like today. You really come to appreciate days that are slow, non-painful, and are spent together, days that are sorta rare when you are blessed with a heart baby... but we'll take however many we can get and hope for many, many more!
I'm home with Benson tonight while Tan is taking the late shift tonight. Bens is about to watch his 'one show' that he gets to watch every night before going to bed, and he just came in and asked, 'mommy, do you wanna come sit next to me and get comfy?' How can I resist that?! Bye for now!

14 comments:

Ryan and Holly Gibb said...

Thanks for the update Avery. I'm SO happy to hear that Bela is doing better this week. She really is such a fighter! She is such a strength to us all, not to mention the rest of you too. The picnic on the floor makes me smile.

AL and ALI said...

what a great day! you do such a great job in finding the precious happy times amidst all the craziness.

TC Jolley said...

Yeah, I'm so glad you had a good day with the kiddo's (well except for that last hour)! We love Bela and are praying for her, you guys are so strong and such great examples. Thanks!

Kimmie said...

Hi Avery! Glad that you had a good day. Little Bela is a doll! You are all amazing and are in our prayers.
Kimmie

La said...

love bela. love bens. love you. love tan. we will miss you guys at the lake. kiss your cute kids for their auntie la.

S & K said...

Oh that comment by Benson is adorable and with that face of his I don't know how you can ever tell him no! I'm so glad the day was just a 'normal' lazy, slow day you definitely need more of those! I'm SOOOOOOOOOOOO happy Bela is gaining "all" that weight, she is ever more just a miracle and a half! Keep us posted on the new updates! Hoping she won't have to do the cath!!!! Let me know if I can take Bens any, any, any, anytime day or night. Ethan keeps thinking he's coming over everyday, so I know he'd be pumped to have him!!! Have a good one! Love ya!

Erin said...

Great news on Bela! She's being a good little girl and hopefully she will just keep on going! What a fun experience to spend the day with the kids...having fun no matter where or how...that's what family is all about. You are a great mom Avery and it sounds like the payoff came in being able to cuddle with your little man at the end of the day!

Simmons Family: said...

SO happy to hear that Bela is feeling better! It's not fun to get bumped from a procedure, but hopefully they will get it done...it will give them a lot of insight into her little heart! Maybe they won't find anything out of the norm and wouldn't that be fantastic??

I laughed when I read about the nurse... I've had my fair share of SLOW ones and I just put my two cents in now :).

Andrea

Branton Family said...

I am so happy to hear Bela is doing so much better. Tell Benson he can have our Bella to play with when Zach comes for surgery on the 2nd. Hopefully, you all will be home and we won't see you. . .but if you are still at the hospital, we will definitely keep you all company! Take care. Amy

PS. Thanks for staying updated on Zach's progress. I honestly don't know how you have the time to do it, but we appreciate it!

Mom said...

Tanner and Avery,
I so enjoy reading your blog and am so grateful when you can report such great news as this one was. What a blessing Bela has been already to your family and to all that know of her and love her. I would agree with everyone that you and Tanner are amazing. Your faith has increased mine. How fun that you got to take care of both of your little ones too. Much Love, Janet

Sally said...

Oh...I am so happy little Bela is growing! I am coming home tomorrow so let me know when Bens can come play next week.

The Silly Nilly Gasser Family said...

You are so great at taking the good times when they come. A picnic in the hospital. So cute. May there be many picnics where ever your family chooses for many many years.

Wendy said...

You are such a great example to me. I read your posts and am amazed at the faith and understanding you have. Bela is truly teaching us all about the big picture and understanding our true purpose. I am touched by her and your family. I pray that all goes well with her and she gains more weight. I am blessed to know you guys and I enjoyed talking to you last week. Good luck with everything this week!

Chad Bennett said...

I am so glad I finally found you guys. I am an old high school friend of Tanners and have thinking of you guys lately. Tell Tanner to call me at 801 three five eight - 5536.