The speech pathologist came to see Clara in the morning. He agreed that the structure of her tongue is hindering her ability to eat, but he was also pretty concerned about her breathing and how that is affecting her eating. Ever since she was born she has sounded very congested and hoarse. The doctors and nurses kept telling us that this is normal for babies that have the kind of surgery that she had, but the speech pathologist thought it was excessive for being two weeks out from her surgery. He noticed that she was having to work pretty hard at breathing and sometimes make the choice between eating and breathing (breathing always wins out of course). This is probably why she doesn't have the stamina to nurse for more than 10 minutes at a time. So he said he would talk to the surgeon about doing a chest x-ray and possibly another esophagram to see if she has inflammation in her airway or if her repair site is stricturing. They did the chest x-ray yesterday morning, but we haven't heard the results yet.
When they came to do rounds on her they said they were going to clip her frenulum. Finally! We've been wanting them to do this for the past week and today it's going to happen. The occupational therapist said it will probably still take Clara some time to learn to breastfeed well though. Even though they are clipping her frenulum which will allow her more movement of her tongue, she won't know right away what to do with her new found freedom. But it's definitely a step in the right direction.
We also started bottle feeding yesterday. We're still nursing a few times a day, but otherwise using a bottle. It's going okay, but the breathing issue is still there so we have to pace her with the bottle. If we don't she tends to take too many sucks without a breath and then she spits it all out in order to breath. And so far she is not consistent in the volumes she is taking from the bottle - anywhere from 20 ml to 50+ ml per feeding.
When the occupational therapist was working with us yesterday on bottle feeding techniques for Clara she estimated that since they are clipping her tongue we will probably be able to take her home by Monday or Tuesday, if not sooner. We're trying not to get our hopes up, but we're excited about the possibility of this being true.
So yesterday felt like a good day with lots of good developments. We're praying that things really take off once they clip her tongue and that she'll be leaving the hospital soon.
On a more personal note about Clara, she's definitely a little girl with some attitude. Every time we have a new nurse working with her they comment on the fact that she really doesn't have an in-between setting. She's either perfectly content or all fired up about something. If she decides she's not happy, her wind up period is almost non-existent. Now this isn't always the case, but usually. Our girl's got some spunk!
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