Monday, May 20, 2013

May 20

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.

9 comments:

  1. Love you sis - you are doing a great job.

    ReplyDelete
  2. That fact always makes me sad... You ARE doing a great job. I know it's frustrating... hang in there. She will be home before you know it and then 13 years later you can look back and it's only a memory...

    ReplyDelete
  3. I always say that the "not knowing" in any situation is the hardest. Questions without answers are tough. Lots of us are still sending lots and lots of prayers your way. You guys have come a really long way!

    ReplyDelete
  4. I echo April's sentiments; "not knowing" is hard. But remember how much better you are able to handle hard things than you were in January. You'll all make it through this, too! You're all in our prayers always!!!

    ReplyDelete
  5. This post brings tears to my eyes. I understand your frustration all too well. Sometimes you wish the questions people ask would go away cause the answers hurt. You guys have come so far. Your spirit and courage are so inspiring. Thank you for your honesty in your blog.

    ReplyDelete
  6. Hard to say who this post was best for... us or you. ;) It's hard to say those things, but we need to hear them as much as you need to say them. You need to be able to ask for space and we need to know that you need it. We all love you so much and would never intentionally say something to hurt you, so it helps when you tell us what hurts.

    I want to tell you that coming home with a feeding tube is no big deal, but I know it is. But really it's not. They don't have to be permanent. She'll figure it out. She will! And when they offer you Early Intervention therapist visits at home, take them and then set boundaries. You decide when they come and for how long and you let them continue to help her, so she can rise above that kind of stuff.

    I only know my own expereince, I don't know Elsie like you do. Please forgive me if I sound preachy or say things wrong. My intention is to support you and encourage you and hopefully give you a "been there, done that" pat on the back once in a while to let you know you are not alone. You won't end up like me, you'll end up like you.

    ReplyDelete
  7. Thank you for posting this. I am proud of you, not many people would be strong enough to do so. We continue to prey for all of you. I hope that when we post stuff it gives you strength & support. I don't think that this post was negative in any way. I was actually very shocked about just a few days made all the difference in the world. Reading that actually put things into perspective more for me. I can't even imagine what you have & are going through. I somewhat understand your frustration with the feedings, but will never truly understand. All I can say is try to continue to be strong, you are an amazing woman & I look up to you in so many ways. I'm not sure if I were in your shoes I would be as strong as you are. We love and prey for you & your wonderful family always.

    ReplyDelete