After having such good news yesterday, I was so excited to see Rachel today and just be happy. When I got into the NICU, I was invited by the nurse to sit in on "rounds" about Rachel. Basically, a doctor and nurses discuss each patient and what their issues are during a meeting. I thought, "Well, I would love to do that and be able to hear only good news this time. I mean, It's only been overnight, what could possibly be wrong that I don't know of?"
So I go in to the meeting and they start talking about Rachel and her having the tube out, and the meds she's on and then they say something about Rickets. My eyes nearly bugged out of my head. I glance over at Rachel's nurse with a look like, did I hear that right?? Yes, she now has Rickets! I am seriously so angry right now I could scream. I am past being sad and feeling sorry for my girl. I am now so angry that we can't even have ONE FREAKING DAY of good news with out the other shoe dropping. I am to the point where I don't even feel like bothering with being optimistic. I think I'll just expect everything to go wrong now so I won't keep being disappointed time after time. Doesn't she have enough issues? What Down syndrome isn't enough? Being born 10 weeks early wasn't enough? Duodenal Atresia wasn't enough? A VSD isn't enough?! No, No, let's throw Rickets in to the mix and make it even more interesting.
Tomorrow they will preform the dye test on her stomach and I'm not even going to think good thoughts. I'm just going to walk in tomorrow and expect them to tell me that something is wrong and she won't be able to be fed (which is supposed to get rid of the Rickets in 3 months) and she's going to have X many more issues. I'm so tired of this crap. Where is that corner that we are supposed to turn?
Maggie,
ReplyDeleteHang in there, I know it seems all bad but there is good in this mess too. Rachel is getting better every day, she is not giving up. She is working to get stronger and yes there have been some setbacks. It will pass and she will be home soon. The good thing is that she doesn't know she is having difficulty. She is just a little powerhouse that will survive. Take comfort in that.
Love you,
Now you understand my "Power of Negative Thinking" way of dealing with life. You think of the worst and, then, when that doesn't happen, you are happy with anything better than that. Sorry to hear about the rickets - but - she'll get through this and so will you Mag. Just think how happy you will be to have her home. Love you all! Mom
ReplyDeleteMaggie, I'm sorry that you all are having such a tough time. I'm praying that Rachel does well with her test and that you only get good news from here on out.
ReplyDeleteMy heart goes out to you both. I hope and pray that no more problems arise so you can get a sense of normality back in your lives and bring Rachel home. Just hang in there a little longer.
ReplyDeleteI will keep praying for Rachel!!
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