Woke up early today to get to TCH before the doctors did their rounds on Lillian. When I got there she was in her swing, it was feeding time.. they had the feed in a large syring hooked on a machine so it timed her for an hour to eat it... We have moved up from this stage and because some of the nurses DO NOT pay attention, they do things WRONG. Was it damaging, no. But confusing to a child who doesnt know how to eat already- YES. I was frustrated from that second on. We do her feeds by gravity, more like a bottle would, we hang them up and let them flow into the tube- it is a little more tough for her belly to handle, but she has been doing fine with it. Anyways, then during rounds I had to ask the new resident to SPEAK UP- acting like she was hangin with a pack of mice!! My attending told me she thought it'd be a couple more weeks, and I said, well.. bad new Dr. Chan- it will be done and we will be out by next Thursday, I hope your willing to work with us... otherwise Im running with her!!! All she does is lay there and eat, and sometimes swing, it is NOT good for her development and you can tell she is ready for more. By this time at home she would be laying on her tummy, hearing baby music, grabbing toys, looking at so much stuff, hearing dogs bark, feeling sunshine, experiencing the world and surely that will help her develop better. I could truly understand if they had a reason, and they clearly did not. New team comes monday and they're going to want to keep her to make sure shes okay. Well, hi, Im mom, I know best, you guys did great work and now SHE'S OKAY! Thank you so much, We'll be leaving now! haha, thats how the conversation will go. Whew. Other than that, I bought her some outfits that will fit so she doesnt have to wear the same ones over and over in the hospital.. I spent time with Tara and her daughter and I just cant wait til Lilli grows a little and they have play mates! We have been patient and done what we needed to do, now we're ready to do what we want to do :0) go on walks, meet my dogs! swim, listen to music, watch cartoons, sit in all her jumpers!
Thank everyone for supporting us. I hope I am doing all the right things, I am hoping to get an email back about doing some work for the turner syndrome society, since my child will have it forever, and I could use a small income right now while I keep going to school! I would LOVE to meet other parents who have these struggles, advice and know what to prepare myself for! Hopefully Ill hear more soon!
Love you all,
Lauren & Lilli