Waking up..
Sorry about the lack of posts...things have been so busy latley. Little miss Bela is requiring lots more attention lately and we're loving it! Today around 2 she was completley taken off all her sedation and pain meds so she has been so alert and awake. I finally feel like I'm getting to know my little girl. She loves to look around and check things out. Today I was there for about 7 hours and she was probably awake for about 4 of those hours. It was amazing. It was the first time she would stay awake longer than a few seconds and actually focus on me. I sat right by her side all day and held her little hand and talked to her. I also got to hold her for a couple hours today. It's amazing to hold her. She's got a lot less tubes now and so it's feels more comfortable to hold her.
Yesterday when I got to the hospital she was wearing a little onsie...it was so cute. I'm sorta mad a Tanner because the last two days he took the camera with him to work so I have no new pictures. She already looks so much better than the last pictures that were posted. She got the big thing off her head that measured her oxygen and so her entire face is clear of things and it's so nice to just look at her. She also got both the IV's out of her arms, so now all she has is a central line in her neck and that is it! She is moving along beautifully. She is down to one medicine for her heart and her feeds that she is receiving by drip. We are slowly weaning her off of all oxygen because she is doing so well breathing on her own. She should be off in a couple more days.
Today I got to try bottle feeding her. Another shock...we didn't think we'd be able to do that for awhile. But she is totally wanting something to suck on. She finds her little hands to suck on and loves her binky so they decided to let her try and see how she did. She didn't really like it..she took about 3 cc's and threw it all up about 45 minutes later. It was so sad. We'll keep trying. That will probably be Bela's hardest task to master before we get to go home, but I'm so excited that we're already working at it. Her surgeon came in to look at her this afternoon and once again said how great she was doing. He said that it's very rare for a baby with her anatomy to have such great numbers (meaning her vitals). It's so nice to hear that. I know we've said this many times, but she really is exceeding all expectations of her, and we hope and pray that she continues to do so. I think it has a lot to do with the fact that she was able to get the hybrid procedure instead of the Norwood. I'm not sure what might follow her next surgery, but we'll deal with all that when we get there. It is hard to see Bela go through so much, but overall she is doing so much better than we ever thought she would, so we are so grateful. Today was a wonderful day for me. I felt like I was able to do some mothering for her for the first time, and I look forward to lots more of it.
I promise to take pictures tomorrow and get them posted. Hopefully we'll have another good night and another good day to report tomorrow.
Yesterday when I got to the hospital she was wearing a little onsie...it was so cute. I'm sorta mad a Tanner because the last two days he took the camera with him to work so I have no new pictures. She already looks so much better than the last pictures that were posted. She got the big thing off her head that measured her oxygen and so her entire face is clear of things and it's so nice to just look at her. She also got both the IV's out of her arms, so now all she has is a central line in her neck and that is it! She is moving along beautifully. She is down to one medicine for her heart and her feeds that she is receiving by drip. We are slowly weaning her off of all oxygen because she is doing so well breathing on her own. She should be off in a couple more days.
Today I got to try bottle feeding her. Another shock...we didn't think we'd be able to do that for awhile. But she is totally wanting something to suck on. She finds her little hands to suck on and loves her binky so they decided to let her try and see how she did. She didn't really like it..she took about 3 cc's and threw it all up about 45 minutes later. It was so sad. We'll keep trying. That will probably be Bela's hardest task to master before we get to go home, but I'm so excited that we're already working at it. Her surgeon came in to look at her this afternoon and once again said how great she was doing. He said that it's very rare for a baby with her anatomy to have such great numbers (meaning her vitals). It's so nice to hear that. I know we've said this many times, but she really is exceeding all expectations of her, and we hope and pray that she continues to do so. I think it has a lot to do with the fact that she was able to get the hybrid procedure instead of the Norwood. I'm not sure what might follow her next surgery, but we'll deal with all that when we get there. It is hard to see Bela go through so much, but overall she is doing so much better than we ever thought she would, so we are so grateful. Today was a wonderful day for me. I felt like I was able to do some mothering for her for the first time, and I look forward to lots more of it.
I promise to take pictures tomorrow and get them posted. Hopefully we'll have another good night and another good day to report tomorrow.
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