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!
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!
Comments
Kimmie
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
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!
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