Take one step forward, two steps back

I remember in grade school, one of my favorite things was that our music teacher let us do the bunny hop at least once a week. It was amusing to know that you do all this movement and then you realize you didn't even make any progress around the circle. Back then, it was fun. Now, not so much. I feel like I'm stuck in the bunny hop but instead of making a stride forward every verse, we are taking two steps back.

My sweet baby is 6 weeks old today. And we've spent most of those weeks in the hospital. It doesn't look to be ending anytime soon either. We have a good day, where she's awake and chattering to us, we can hold her, and she can get food down her tube. Then we have two really rotten days where she sleeps the entire time, her heart rate drops, and sometimes she has apnea. Then back to a really good day after. Rinse, and repeat. We had two excellent days in a row Monday and Tuesday this week, which was exciting and uncommon for us. That is until they decided they needed a full MRI which required her to go under general anesthesia. My immediate argument to this was that I did NOT want her under general anesthesia because she already has issues breathing and I was afraid once they put her on the vent, she wouldn't be able to come off. My fears were dismissed and I was told it was no big deal and that they'd remove the tube within a few hours after her MRI. So we agreed to the MRI against my better judgement, it lasted for 3 hours and she returned to her room at 4:00pm yesterday. As of 3:00pm today, guess who is still on the ventilator... And guess who just came in to tell us they aren't going to try weaning her at all today? And.... guess who is one pissed off mommy? I'm sure you got all those answers correct.

The MRI showed that her Chiari malformation actually looks better than it did when she was born, which means it is attempting to move higher up into her head. The neuro team wants to wait and see if she improves even more before they do a decompression surgery. I understand they want to be careful because this is a big step and she is so young. However, the point I cannot seem to get across to anyone is that it does not matter where it's at, or if it continues to look better, because she had no symptoms when it looked worse and now she has symptoms. I am the last person who wants my infant to have surgery right next to her brain, but at the same time, how long do we have to sit here and look at her struggling to breath, or worse now with a tube down her throat that she clearly does not want (ex: attempting to yank it out herself at any given chance).  And it breaks my heart because when she wakes up, she has tears streaming out of her eyes now. Seeing her today in the condition she is in versus yesterday and what she looked like is just alarming. It just makes me so mad that she still has this tube when less than 24 hours ago she was functioning just fine without it and actually improving. Now I wish I was never pressured into the MRI and the anesthesia, because we wouldn't be in this situation. I let them lead me, and now I know better. My judgement will always come first from now on, because obviously they aren't doing what's in her best interest anymore.

In more bad news, my FMLA runs out on April 13th. I have to go to work April 16th or risk losing my job. Part of me says fine, whatever, because my child needs me more. But another part of me says there are no teaching jobs out there, and I like my job. I hope this all gets straightened up before I have to make the decision to leave my child or lose my job... I feel like that's one more thing to add to my plate (and right now my plate is already filled with disgusting food). For the sake of my sanity, I really need something to go right for me now. Because I don't know how much longer I can take this.

Everyone keeps telling me to take a break, get out of the hospital, do something normal. Right now this is my normal. It seems so easy to just leave and do something like go out to eat, stop at the mall, etc. It's easier said than done. And I won't be doing it any time soon. It's harder to leave her than it is to sit here with her and suffer beside her. Those "normal" things won't be pleasurable because I'll be thinking about her. Nothing I could do would take my mind off of it. I know people just search for things to say to try and make you feel better, but sometimes just knowing someone is there is enough.

I know I don't call or text my friends and family right now. I still love you all, but there's a reason. I don't want to talk about it. I don't want to relive every bad thing that happened throughout that day. I don't want people to ask me how things are going. I don't want to have a million questions thrown at me that I don't know the answer to. If I knew the answer to them, we wouldn't be in the place we are now. We'd be fixed and home and happy. But I don't, and we're not. And it just hurts too much to talk about it right now. It's just easier to write it once, get it out of my system, and keep to myself the rest of the time. I feel less like puking then.

I have to say, maybe not a less depressing post, but definitely a less angry post than the last. We appreciate all the support and thoughts everyone is sending our way. I hope eventually I have some better news to post!