Nothing new or exciting to post. This is somewhat frustrating to say, because it's been over 3 weeks since we started Elsie's feeding by mouth, and there has been very little progress. Sometimes she starts eating eagerly, only to become overwhelmed and frustrated shortly after starting. Sometimes she refuses to wake up to eat. It's hard to say if she uses sleep as a coping mechanism, to deal with the confusion and frustration of eating by going back to sleep. Or maybe she's not getting enough restful sleep in her room with 5 other babies, two nurses, constantly beeping machines, and the many parents, visitors, doctors, and various other people going in and out all day and night, and is simply too tired to eat. We don't know what the problem is. We do know that she has a lot of issues with overwhelming sensory information; which means that she's still extremely sensitive and wary to touch, mostly around her face.
The OTs and primary nurses are working with us to help her overcome her issues, but it is a struggle to stay patient. It doesn't help when we have countless people asking us every day when Elsie is going to be home. I don't mean to offend anyone, and I know that people are just curious and want to know, but please don't ask when she'll be home. It's too heartbreaking to admit that we still don't know. Yes, we know that it's 2 & 1/2 weeks past her due date. Yes, we know that she's as big as a full-term baby. In fact, when people ask me lately how big she is, I cringe inside and sometimes fudge the details, because I know what's coming next: "She's that big?! And she's not home yet?!" Guess what, there are more important things to deal with than how much she weighs. I'm sorry if that seems rude of me to say, but believe me, we'll tell you when she's coming home! We'll shout it from the rooftops! In the meantime, please be understanding and don't ask. Elsie will come home when it's safe for her to come home. She still has to be cleared of the ROP before she can leave the hospital; that is our biggest hang-up right now. If she still hasn't gotten the hang of eating by then, she might come home with a feeding tube. Right now, it's all just a wait and see.
Something that I try to keep in mind is that, despite the fact that Elsie is 42 weeks old, or two weeks old "adjusted-age", she is going to be developmentally behind her peers for a while. She went through a very traumatic and extremely early birth. Did you know that if Elsie had been born just a few days earlier, that the doctors probably wouldn't have attempted to save her life? She wouldn't have been viable, or able to live on her own, even with the support of the amazing medical technology. If she had been any earlier, we might have only been able to hold her after she was born and be with her as she passed away.
We give thanks every day that she has come so far, that she has miraculously survived with surprisingly few problems. We give thanks every day for our miracle baby. We long for the day when we can be done with hospitals and separations. Thank you all for your endless support; I know that we are loved and prayed for by so many people, and we can feel it. We have been blessed in un-measurable ways during the past 136 days. I apologize if this posts seems a little negative; I didn't intend for it to be that way. I'm just saying it how it is. Thank you for helping us in so many ways throughout our NBICU journey. It would have been so difficult and lonely without all of your support.