Thursday, August 20, 2009

20 August

First - a public apology for my husband and father being uber-cranky towards people who didn't deserve it today!

Finally got the endoscope done. 645 - nothing scheduled. 815 - it's scheduled for noon. 900 - moving it to 10. 1030 - call from anesthesia about pre-op stuff. Ugh. What a headache. Hence the Starbucks Grande Latte, a bag of mini-Heath bars, a bag of mini-Mr. Goodbars, and a skim milk for lunch!

Surgeon never called me before everything. Thankfully, I knew what the deal was. But he still should have called me beforehand. My parents were able to make it there in time, despite the mess. And afterwards, I got a message from the surgeon that everything went well. Everything looked fine, and they are sending the biopsied stuff off to be tested. Should know results in a few days. And Awesome Auntie Cheryl also called me. Princess was doing well, wiggling around and all.

Then I get the lovely news that they are doing another upper GI Friday. Um, Doc, when were you going to tell me THAT? I don't know who dropped the ball, but I'm trying to stay calm. Not easy when you don't know what the hell is going on.

Headaches aside, she was a sweet little darling tonight. Cuddle time on her tummy with Mommy. And dressing in hot pink - headband and all!

Wednesday, August 19, 2009

19 August

Same shit, different day.

The docs tapped Maryn on Monday and Tuesday, hoping that would fix the spitting. Some thought that if there was a pressure build-up in her head (from the bleed, etc), that could be the cause. So far, I haven't noticed a huge difference. A little, yes. But I think things overall have been getting better over the past 2 weeks. VERY slowly, but still an improvement. So of course I'm left wondering what to do if they recommend the shunt. Is it too early to tell for sure or not? Ugh. At least she decided to show her doctor what she can do by spitting in front of him yesterday. It was decent, but not tremendous (only hit the floor, not the chair). He was, um, impressed? Oh, and tomorrow she goes in for an endoscopy and biopsy to see if she's developed a protein/milk intolerance or allergy. But we don't know when yet. And I have to work. And David has to work. So I'm seriously cranky. And we might not be able to get OUR nurse. Yeah, she's as much my nurse as Maryn's.

So needless to say, I'm annoyed and pissy. I really don't know how much longer I can take this. How much strength could I possibly have left. I just want my baby girl...

Saturday, August 15, 2009

15 August

Nothing new going on in the Page household. We are still in a holding pattern. Neo is checking with neurosurgery again to see if we can try tapping the reservoir on the off chance it might help with all her spitting. Basically, just making sure there isn't a big risk or anything. If that helps, then we are back in for the shunt (BOO! So not cool at this point.). If that doesn't, or if surgeon says do not tap, we're looking at a GI endoscope to look for protein intolerances, etc.

I am just getting tired of all this. Let me bring my baby girl home already!

Tuesday, August 11, 2009

11 August

Well, baby girl managed to hit 7lbs 1oz on Sunday night! At 4 months old, she's now the size of the average newborn. Strange to think about it like that.

she's still spitting. Doc is trying her on erythromiacin (sp) to help her GI motility. Aka, he wants her to poop more. That's one thing that drives me batty about this medical stuff. Stop making everything sound so freaking fancy! Sheesh! Emesis (puking)! Stooling (pooping)! Secretions (phlegm and spit)! English please. :) Ok, off my soap box. Anyway, doc decided to do this because he's at a loss. Doesn't know what else to try, and this was something the GI docs had mentioned. She very well could just be a spitty baby. I'm ok with that, as long as we are sure there isn't some bigger problem causing everything. But I get the feeling that the doc is afraid to send her home this spitty because he doesn't know how I will handle it. Poor guy - I bawled in front of him about a week ago, and I think it completely freaked him out. Like he actually looked scared. God bless him. It's just how I deal - he did everything right, and I appreciate his candor.

But on the good side, she was awake, alert and interacting for about 3+ hours tonight. David and I showed up to receive a gift from the Wishing Well Foundation (Children's Hospital and State Troopers), and Maryn was starving. She ate her 70 ccs (which she later spit maybe 20 of). "Smiled" for the pictures, and then wanted to play. We played with her new toy from the foundation for a while. She kept getting one of the duck's feet. So cute. Oh, she also continued to taunt me, the nurses and the RTs by punching her HME/O2 off. Typical.

Jaime is trying so hard to be a big boy. He desperately wants to walk. David and I will sit on the floor and Jaime will "walk" between us. Sometimes, he'll take a few steps while holding on to only one finger on one side. He gets so proud of himself when he does that. Big smiles. And he's so smart too. He knows several body parts and understands so much. I am so lucky to be these kids' mom!

Saturday, August 8, 2009

8 Aug

Quick, before my headache meds knock me out....

Maryn got switched to a new formula today. GI docs wanted to try something more broken down. Never heard of this stuff before - progestamil or something like that. No idea where I'd get it if it works. But so far, so good. She took just shy of 3 oz (that's right 3, not 2!) and didn't spit yet. I stayed for about 2 hours after she ate, so I'm guessing it should stay down if it hadn't come back up yet.

I bought her some headbands today. I'm guessing she's not fond of getting bows stuck to her head with KY anymore, so we'll see if she likes these better. Will post pics when 1) I get off my arse and load them onto the computer and 2) when I figure out how to get them from computer to here. Shouldn't be hard, but then again, none of this should have been so difficult.

God bless the amazing women who have signed up to take care of Maryn once she comes home. Whenever that will be. Not only JoAnn, but now I find out for sure that Emily and Mandi will each basically be covering a shift a week. So now I can sleep at least 3 nights! I know they'll be "working," but since they'll be in my house, they're REALLY gonna become my family.

Jaime is adorable as ever. Loves talking on the phone. He'll grab it and start kissing it especially if David or my mom are on it. Oh, and he officially says "honk." We get his nose and say honk, then he does it to himself. So cute. Sometimes he'll even honk my nose. And I'm teaching him what the word "sing" means. He's starting to get it, so at his rate, he'll have it down pat by Wednesday

Wednesday, August 5, 2009

5 Aug

Ugh. I'm back at work. So prepare yourself for lots of whining and bitching in the near future.

But Jaime is so freakin' cute. He LOVES to dance to the radio while eating breakfast. He puts his fists out and bounces them up and down. And he totally knows what he's doing. You can see it in his eyes. My mom taught him this naaaaa-na-na-na-naaaaa song. He'll dance if you sing it, then start saying "na-na-na" to encourage you to keep going. LOVE IT!

Maryn is stable. No news from the neurosurgeon, which of course is driving me batty. Why they can't make it in to see her within 36 hours is beyond me. I just want an answer dammit. Is pressure building up in her brain or not? And the resident who came by seemed clueless. No answers whatsoever. I thought he just needed an Oreo and a glass of milk.

I did convince the doc to switch her, at least temporarily, back to the original formula. I can't tell you how many times I've heard "but she can't go home on that formula" over the past week. First, shut up about it! I wanted to breastfeed her, but I was so sick, that there was no way. So thanks for reminding me! Second, don't tell me that is this ends up being the ONLY thing she can tolerate that we won't be able to get it. Yeah, it might be a pain in the ass, but don't tell me it's impossible. There has to be some way if that's what it takes. Third, if it doesn't help with the vomitting, at least we'll know for sure that's not the problem.

Now for me - I swear if one more person tells me how wonderful or special or strong I am, I am going to puncture my eardrums! Seriously people. Stop feeling sorry for me. Yeah, I hate this situation more than anything. But I also have the two most beautiful kids in the world. I wouldn't trade them for all the tea in China. Yes, it's hard. But any parent worth their salt would do the same. I have to just suck it kup and deal with it. I whine, complain, piss and moan, cry, etc, but it's just my way of dealing. You know how I hate the lack of control. So please, if you're searching for something to say to me, tell me how beautiful my kids are. Tell me how glad you are to see Maryn getting so big. Tell me that Jaime's smile makes you melt. Just don't pity me please. This is hard enough as it is, and that just might push me over the edge.

Monday, August 3, 2009

3 August

Venting again...

Ok, so we are still dealing with the vomit issue. She's not projectiling any more, but still spitting. New doc wonders if it's her brain that's causing the problem. Even though the ventricle size has been stable, there could be more pressure than thought. And if that's the case, we might still be in for the shunt. Waiting for ultrasound results.

And of course I'm battling the anger demon about it. For crying out loud, WTF has she done to deserve this? Huh? Playing the cards you're dealt? I don't think so. Cards don't work in the game of football. Would someone PLEASE just tell me WTH is going on? I'm tired. I'm tired of having to choose between my son and my daughter every moment of every day. I'm tired of wondering how I can afford gas to get to the hospital to see my daughter. I'm tired of the "wait and see" answers. I'm tired of people telling me that I'm so strong for dealing with all this. I'm tired of getting angry.

I just want to get my baby girl home.

Saturday, August 1, 2009

1 Aug

I have yet to see Maryn today, but here's the latest. I'm at "work" and need something to keep me awake.

First, after thinking the worst about her tummy, things seem to be "looking up." No aspirating her food, and yes, they still are dying it Smurf blue. Nothing like that coming out of her trach. Back on 22 cal Neosure. Low and behold, she is spitting again. At least from what I hear, it's not projectile any more. So she got switched to Alimentum. Spit still after the first bottle of it, but it may take a few days for her system to adjust to it. We'll see. Not the most ideal situation, as it's not "formulated" to grow preemies, but it's better than nothing!

Insurance sucks. They are arguing about whether or not home nursing care is "medically necessary." Umm, yeah. Let's try and teach a stranger with no experience how to use the 7 different machines in our house. Plus how to change Maryn's trach, or clean it, or suction, or how she can play, or.... Idiots. We are going to find a way for it to happen one way or another.

And when we find a way, I am so pleased that JoAnn is going to be one of her nurses! Monday and Thursday nights I guess. So I am declaring that she is Charge Nurse of the Page household. At least I know I'll be able to sleep those nights. Maryn will definitely be in good hands. :) Now who else that we know wants to take other shifts?