It's hard to believe that Cora had her surgery three weeks ago. The last two months are all a blur, so much happened on little sleep and so much medical chaos that I became numb and lost track of time. It's all a very hazy fog.
I need to write about the changes I've seen in Cora, they are significant! She's like a whole new baby! She didn't go home with any pain meds, just Tylenol as needed. The day she got home she was rolling from side to side and one time she even rolled over from her back to stomach, she's reaching for her toes, she can grip and play with toys, she's constantly pulling objects to her mouth, she lays on her side, she'll lift her head up like she's doing crunches, she splashes in the tub, etc. There are more things but I'll keep it at those few. If someone is holding or playing with her, she'll actually act interested in what you're doing and study your face. Before, she couldn't play/reach/grab toys at all. She would just lay on the floor and not move much. Period. She's always had a happy disposition but now she's definitely a happy baby!
Cora was in so much discomfort and pain that she couldn't focus or think outside of her own body. Her reflux and gastric emptying was so severe it was really delaying her development and her just as a person. She couldn't do anything because of it. BUT, now she's a whole new baby and I'm so glad! I'm so happy for her, that she's comfortable and can actually play with toys and want to reach her toes or roll around without so much pain. I've been so awestruck and she's now one determined little girl.
It makes me wonder: was it solely her gastric issues that delayed her? Her MRI showed the HCC and the irregularity of the lining of the ventricle, but what if she's one of the few that it doesn't affect? Does this mean she has to ability to catch up to others her age? Does this mean she will be "normal"? Of course she has the heart defects too but those don't affect her neurologically as far as I know. I don't know the answer to this and I don't think the doctors do either. It's still a waiting game to see how she will develop on her own.
She's still in speech and physical therapy which has been going well, her physical therapist is beyond shocked at what a difference the surgery has made for her. During her session, she's relaxed and calm and not constantly fighting against the reflux, it's been so amazing to watch.
As far as speech therapy goes, I'm still meeting with Jan who's great and also Jordan (nutritionist). I'll meet with Jordan once a week until she's back on oral feeds 100%. Right now we are doing bolus feeds which change every 3-4 days. The purpose of this is to decrease the use of the pump, increase oral feeds, and increase gastric resting. She's up to four, 2 oz feedings every day and is tolerating them well. She's doing so good, I'm so happy for her! As a mom, I'm just trusting my instinct and listening to what her body is telling me. I totally forgot I'm supposed to thicken her bottles! Idiot me! So I watched her the next day or so and she was showing a few subtle signs of aspiration. Jan ordered another swallow study which is yet to be scheduled, but I'm hoping I didn't cause irreparable damage or cause her to regress.
Last week she got her first taste of solids! Jan started her on oat cereal (she's allergic to rice cereal) and she did great. We aren't using it for nutritional value, just to help her oral skills and development.