Seriously?

Edit::::
Moments after posting this, I read some humbling, terrible news from a friend of mine whose daughter is struggling. Please say a prayer that this family finds comfort and a miracle in their time of need. My problems below are insignificant and this family has already been through so much. They deserve a piece of happiness.

Callista had her decompression surgery Tuesday afternoon. They did a bronchoscopy before the actual surgery while she was under to make sure there were no abnormalities. It was completely normal. The surgery was estimated to last around 4 hours but we were closer to six or seven by the time they completed. The neurosurgeon feels like he was successful in decompressing as much as he wanted to and is hopeful that it fixes her swallowing/sensation issues. He said it was pretty squished in there, so we're optimistic about the results. I was a nervous wreck of course and cried my eyes out when they took her away from me. But she was giggling and smiling the entire time before they took her, so I knew that was a sign we were doing the right thing.Right now she is still intubated and on pain meds but she was waking up a little this evening before we headed home. They are hoping to have her off the vent tomorrow.

Yesterday was a pretty miserable day for Casey and I. We had gotten so used to having a room with some light and privacy. We've now been moved to another NICU where there's no windows in sight and instead of rooms there are just curtains. You hear every beep, cry, and conversation in the entire unit. Our curtain doesn't even close all the way so there's absolutely no privacy for us. With her vent machine in there, there's barely any room for the two of us to be in there, let alone if someone comes to visit. My favorite part is that staff just randomly walk into your "room" and start chatting with each other as if you're not even there... I don't mind idle chatter but seriously, you have to squeeze into our little space to do it? So I was a little (okay, a LOT) grumpy yesterday just for being forced to sit in a tiny, dark space for hours on end listening to the baby next to us scream his head off the entire time. Since Callie was still pretty drugged up we decided to leave a bit early. On the way home, I asked Casey if he'd like to go see The Hunger Games with me since we haven't had a moment to ourselves in so long. We went to the movies and about a half hour into it the electricity went out. Once they got everything up and running again, our movie played for about 15 minutes with no sound at a pretty crucial part. Since I read the books I knew what was happening, but everyone who didn't was probably at a complete loss. They got the sound back on again but didn't skip back so we could see the part we missed (ugh!). They "made up for it" by handing out movie passes at the end of the movie (movie pass = ticket to movies that doesn't work for anything new/good/you want to see). We headed home and about five minutes down the road, my car breaks down. Just died. No warning. We had to get towed to my dad's garage and ended up getting home a little after midnight. Fun times...

I feel like everything is just kicking the crap out of me right now. If it's karma trying to teach me a lesson, fine. But at least let me know what the lesson is that I'm supposed to be learning. I think we deserve something good to happen to us now after everything we've been to but it just keeps piling on. Time is ticking for me now, only two more weeks left until I have to return to work and no sign of home in sight. Things need to turn around for us really fast now.

I'll update on how she does off the vent later (she was already quite ticked this afternoon about it all). Thanks for following our story,over 7000 hits now, it's crazy!!! We love you all and appreciate your prayers and support so much.

Terrified.

Terrified is what I am. Callista will be undergoing a decompression surgery tomorrow at noon. It's a fairly common procedure for children with spina bifida, but not usually on babies as young as Callie. I had a good talk with her neurosurgeon this morning and he's confident in the procedure, but I'm still a nervous wreck. I'd feel better if there were more parents who had to do this so young, but after posting in forums, I only found two other parents who had to go through this around the same age, and these posts were old.

I spent all day just cuddling with her. The irrational part of me spent the day crying, wondering if this would be one of the last times I'd hold her, the last time I'd see her smile, the last time I'd hear her laugh. I know this isn't the way I should be thinking, and I'm trying so hard not to. Again, this is not the first child to have this surgery nor will she be the last. I do have faith that things will turn out just fine, and I truly hope this will solve her breathing problems and we can head towards going home. But even though I know these thoughts are irrational, it won't stop me from freaking out tomorrow when they take her off to the OR...

Please remember us in your prayers tomorrow and following surgery for a speedy recovery. We appreciate it so much and they're very much needed.

One thing after another

Callista has been doing so well over the last week. She's been more awake and alert.  She still wasn't swallowing until yesterday. When I was holding her yesterday I actually heard her swallow twice. We really thought we were making progress. Until today of course, because every time we think we're going forward, we go backward. She had a swallow test today and while she did swallow, they told us her swallows did not align. She did not have any sucking reflex. They said they were not officially done with the study for another two days but their recommendations at this time were to continue OT with occupational therapy and to put in a gastric feeding tube.

I'm so frustrated right now. This is just one more thing to add to our long list of things. I've had it. How am I supposed to keep my sanity in all this? I think things are happening just to piss with me now. How about the fact that we got stuck at the hospital last night because of tornado warnings? Again, one more thing. And I was so frustrated today because the doctor in charge of the study brought up my folic acid intake not once but twice. The first time, I assumed it was just a question. He asked me if I was taking my folic acid before I got pregnant. I informed him I was on prenatal vitamins for years before I became pregnant. Not more than ten minutes later and he asked me again if I was taking ENOUGH folic acid before I got pregnant. Uh, did we not just discuss this? And then randomly after that he continued to go on about how he doesn't usually see spina bifida in children when the mom took her folic acid. Sorry buddy, let me introduce you to all the women I've met online who are in the same position I am. We took our folic acid and it still happened. I was also disappointed because this guy is supposed to be awesome and the only thing we've jumped to is a tube in her stomach.

I want to talk to our neurosurgeon first before we move forward with anything. I do not want her to go through this surgery as a temporary fix and then have to still do the decompression surgery to fix the actual problem. I just have a hard time thinking after how many weeks we had of swallowing just fine and then all the sudden we have no other option? I'd rather hear what neuro has to say.

Another frustration I have right now is that every new person who sees her wants to "diagnose" her with something new. Literally, every time... I've had things brought up about her eyes, her legs, her head movement, and her thumb placement. Seriously guys, we have enough to worry about, lay off. I will say I'm so happy to have been moved from the PICU to the NICU. They know a heck of a lot more about babies. And we've had some pretty great nurses the majority of the time. I do worry though that she's not getting held and cuddled when I'm not there because she is fed through a tube and not by bottle. Which leads me to the fact that the day I have to go back to work is looming so close to me and the thought of it is making me sick. The thought of having to go about my job and be productive and be myself is just sickening to me. I can't do it. I just don't know what to do. I didn't ask to have this happen to me and yet I feel like I'm getting punished in every which way possible.


As a disclaimer to any future SB mommy... These things don't happen to pretty much anyone else... I wouldn't trade my daughter for anything, but damn it's hard. Plus I came home to a cabinet full of little brown bugs last week and Mike died on Desperate Housewives. How much worse can it get?!

Beep. Beep.

Beeeeeeeep beeeeeeep beeeeeeep! Oh, wait, sorry. I guess I got caught up in all the ambiance here at the hospital. I swear I'm going to be hearing beeping for the rest of my life, even when we get home. One big difference between the NICU and the PICU is that NICU nurses stay close by and the beeps are silenced within a minute or less. PICU nurses disappear for hours on end, and the beeping is generally ignored. For instance, about 30 minutes ago I saw Callie's nurse for the first time in about three hours. She said "Oh her feeding pump is almost empty, I'll go get some milk ready... And now we're going on 10 minutes of the pump beeping profusely saying it's empty and there's no one in sight. So yeah, the beeping goes on, and on, and on, and on. Aren't I crazy enough as it is? No need to be driven there :) On top of that, I swear its a hundred degrees in here!

I told you in the last post I hoped for some good news to report, and we have some! Callista was taken off the ventilator Thursday afternoon and instead of going to the cPap, she did so well on her own that they switched her over to high flow oxygen instead. Once she had the tube out, the poor thing slept all day trying to recover. Friday she was an entirely different baby. She was opening her eyes more, chattering a little, and trying to cough on her own. She hasn't been swallowing or coughing up anything on her own since we got here. By Saturday they took her off high flow oxygen and now she's just on regular oxygen. So many steps in the right direction, it's kind of scary. Today she's been wide awake and "talking" to everyone. Grandpa K got to hold her today and she was in love! (I think Grandpa might be as well...) She stared and stared at him lol. So in a matter of a week we went from bad to worse to awesome. What the heck is going on here??

Our neurosurgeon is being very cautious right now, just waiting to see if we do in fact need to do a decompression surgery. At this point, she still doesn't swallow on her own and she does need oxygen to keep her stats up so we're still a far way away from coming home. And we're still in the realm of probably having to do the surgery. But the doctor knows what he's doing and we trust him. So we'll continue to wait and see.

We'll take this tiny pieces of good news as though they're mountains of good news because it's been so long since we've had something to be happy about. Every day it seems she is getting a little stronger (and chubbier, she's 7lbs 14oz now!). I am so thankful that it finally feels as though someone is listening to my prayers and the prayers of everyone who supports Callie. For awhile, my faith was shaken to the point of not having any. We truly needed this sign.

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!

Just Can't Win

We just cannot win...

I'm to the point where I'm tired of hearing how strong I am, how God has a plan, and how things will get better. I'm just done. I've got no patience left and I'm trying hard to keep some sort of faith but it's getting harder and harder as each day passes. Yes usually I'm a pretty positive person, but I just feel dead inside. It's a combination of being here at this stupid hospital again and having your child continually quit breathing on you. I'm just done.

She has no episodes until we get here. It's every freaking time we walk in the room. I call in the morning to see how her night went and everything always goes smoothly. Then we get here and she immediately has an episode of not breathing, heart rate dropping, etc. I'm scared to even look at or touch my own daughter because every time I do, she has some sort of fit.

Everyone wants to go on and on about how strong I am. Here's how strong I am. I cry EVERY DAY. I cry when I'm in the shower. I cry when I read about all these girls/women who are having happy, healthy babies and the worst thing they are worried about is the weight they will gain. I get mad when people tell me "God has a plan" because this is not His plan for me. Why would he do this to me? I get aggravated when people tell me "God doesn't give you more than you can handle". Because this is now more than I can handle. I cannot handle sitting here just watching my daughter struggle, not being able to hold her because if I do, she will stop breathing. I cannot handle being in this hospital one more freaking day. I cannot handle the questions of how is she, what's going on, what do you know, how will they fix it, when do you get to come home. I am just done.

I'd say I'm sorry for the negativity, but right now I'm not. Right now I need to be angry at my situation because for the last seven months of my life I've put on a smiling face, I've pretended to be happy, and I'm not. And I've expended too much energy trying to be what everyone thought I was and I can tell how much it's wearing on me by the look of my eyes, my dark circles, and my body. I'm not bitter, I'm just dead inside for now, and I'm allowed to be.