Thursday, July 30, 2009

29 july

well, well, well...

Jaime is a cuddle bug. He will not leave my side until after lunch. Which for him is about 2 pm of course. But he's wonderful. And those pucker kisses he's always giving out can't help but make me smile.

And I'm very thankful for those little things that keep me smiling.

I've been getting back into an angry rut re: Maryn. I'm pissed at the world because she shouldn't have to go through any of this. She's done nothing wrong. I just wanna punch something. Possibly myself. But then I get more and more pissed for feeling this way. Joy of the never-ending spiral.

Maryn has been spitting more. Ok, not just spitting, but projectile vomitting. Seriously. I guess she hit the chair that is about 1 1/2 feet away from her crib this morning. And pretty much after every feeding. Thought it might be only when she doesn't burp. Nope. Maybe if we suction her too quickly. Not that. Perhaps she needs to stay upright for a while after eating. Didn't help.

*I* think it's due to a change in formula. Doc said it could be some stomach stinosis (sp) thingy (narrowing just below the stomach leading to small intestine). Only fix for that would be surgery. YAY! (Insert glare here) Well, the tests for that came back negative. So no surgery needed, but no clear cause to the problem either. So, she's off formula for 24 hours. On pedialyte. Yumm-o. They'll try to reintroduce probably the same formula tomorrow, since the thought is she might just have a stomach bug. (Of course, she's not showing any other signs of being sick - no temp, no poop problems, no lethargy, and she still wants and tries to eat) If that doesn't go well, I'll be convinced that it's the formula. But here's to hoping I'm wrong - I don't wanna see my girl go through that!

Oh, and some doctors need to be impaled through their self-centered, heartless torsos. Of course I'm kidding, but there are some terrible ones out there. Today, I asked to talk to the neurologist. When he came in, he looked all confused and told me "I thought I already explained all this to your husband." Um, yeah. But he's not a doc, and I'm not a doc. So I wanted to talk to the doc personally! Get some answers to my questions that David didn't know to ask! You schmuck. Needless to say, we won't be seeing him again. Thankfully a little birdy told me that Jaime's old neuro is back in town and working in schmuck's office.

And we have been trained on portable suction machine, regular suction machine, infant CPR with a trach, apnea monitor, humidity thingy, portable oxygen tank, main oxygen machine with add-on, and back-up oxygen tank for emergencies. All since Monday. I have blue painters' tape on these things to help me remember what the hell does what. I think I'm secretly being trained to be a car mechanic.

Ya wonder why I needed a night out?

Saturday, July 25, 2009

24 July

Ok, I'm in a sentimental mood. Consider yourself warned.

First, Maryn is holding her own. She's weighing 6-8 1/2. Eating decent (still at 5 bottles), but spitting a little more. They did put her on some oxygen though, as she was sat-ing in the upper 80s/lower 90s. Great for a preemie, but now that she's considered term, the doc wants her in the mid 90s. I'm having a bit of a time trying to convince myself that this isn't a set back. I *know* it's going to help her grow, and that growing is pretty much the most important thing for her right now, but still. I liked it when she wasn't hooked up to as many wires/tubes. It's nothing huge, but, oh hell, I don't know.

I am just so darn thankful for all the wonderful people at Children's that have saved my daughter. Thanks to them, she is alive today. I swear anyone in Omaha who even thinks of going elsewhere is a complete fool. Seriously. They are now more than nurses, more than friends. These people are my family. Amy, Cheryl, Sunny, Emily, Mandi, JoAnn, Kristen, Heather, Stephanie, Kelley, many others who aren't coming to mind at this ridiculous hour. They have kept me going, never letting me give up. They always point out the bright side of even the darkest days. They make you believe that miracles can happen, even when it seems impossible. How do you thank somebody for giving you the awesome gift of your own daughter?

Thursday, July 23, 2009

23 July

Wow. I totally suck. It's been days since I've updated. And what a few days it has been!

First, Jaime loves to give kisses. Has for a while. Today, he started giving his giraffe Melman kisses. He puckers and does the "mwah" sound effects and all. But will someone please explain another obsession of his to me? He likes to rub his butt on the floor when I change him. No, not like he has an itch or anything. And he giggles while doing it! Yeah, he's gonna kill me for putting that out in cyberland when he gets older, but whatever.

Maryn took her first bottle on Monday. Downed the whole thing. They started her on 3 bottles a day. Now, she's up to 5 bottles a day. MRI tomorrow to just check things out. They don't expect to get a lot of new info, but it won't hurt. And they aren't putting her under anesthesia for it. If they did, she'd have to go back on the vent. NOT OK! So I'm glad about that. She's up to 6 lb 9 oz as of last night. She's having more "awake" moments too. Up for about 2 hours with me this afternoon. Of course, my mind draws a blank and I have no idea what to do to entertain a 3 month old/newborn. She has a new dolly - a trached Minnie Mouse. :) I have to get pictures of that. And learn how to post them here. Ok, I'm really rambling aimlessly and I can't think. Off to read...

Saturday, July 18, 2009

18 July

I guess it's officially the 18th, but anyway.

The vent is gone. Auntie Cheryl was right. :) Took her straight off and put the trach collar on. Decent blood gasses (something in the 50s) and SATs mostly in the lower 90s. I talked with the Respiratory Therapist this afternoon, and she had already taken the machine out of Maryn's room. I swear if I ever see that cursed thing again, it's going out our 5th floor window.

AND I suctioned her twice today. You proud of me Auntie Amy? David even tried it. Yeah, it's scary, but whatever. At least we've been seeing her get suctioned every hour or so when she was on the vent, so it's not completely foreign to us. Just the technique and all. I managed to screw up with the glove the first time, but I'm happy to be entertainment for the night crew.

We can hold her now too. The Neo had said no, but we asked the ENT yesterday. He was fine with it as long as we disconnected any tubing stuff before we moved her. Man, that was wonderful. He didn't get far before I had her in my arms. Actually, he was still writing the OK order down in her chart!

And Jaime is a stinker as always. We had a meeting with his case worker today, JoDell. We really like her, and she was just coming over to talk and get updates. Well, we sit down, and she says hi to Jaime. Right away, he looks at her and says "bye-bye!" Waving too. It was just too cute. Every time she'd ask him something, she's get the same response. Stinker I tell you!

Wednesday, July 15, 2009

Happy Due Date (yeah right) July 15

Well, it's done. And I have to say that as awful as it was, I now can see that it is a blessing in disguise. She did need the trach. We just couldn't tell until the doc got in there.

They had to reintubate during the procedure. Well, during her first bronch, he was able to get a 3.5 tube in easily. At the 2nd bronch, he could only get a 3.0 in. Today, the 3.0 wouldn't even work. So, that means that the swelling was still there and actually worse. I guess I kind of look at it like a callous. The ET tube kept rubbing and rubbing on a certain area, so it got bigger. But if you stop messing with the callous for a period of time, it will likely get smaller. That's the hope - the swelling will decrease over the next several months, and she will grow, so that we can get rid of the trach in roughly a year.

And she was breathing so much easier. I thought she was doing fine before, working a little, but not terribly hard. Only now can I appreciate the difference. No more pulling to try to get a full breath in. I can't explain it in words - it was something you just have to see.

So yeah, I'm more confident with our decision. Yes, it's going to suck to have to deal with the extra trach crap. Yes, I still feel completely responsible for putting her through this. Yes, I'm impatient and want her off the vent and in my arms NOW. But if it's what's best for her, then I'll find a way to deal. Very possibly using agave nectar, but still.

I must also say a huge thank you to everyone who sent prayers up for her. Keep 'em coming. They seem to be working. It's weird - going through all this makes me feel completely alone and yet very loved and lucky at the same time. That's because of you, my friends. You don't let me give up. You give me a hug when I need it and a smack of reality when I freak. Thank you.

Tuesday, July 14, 2009

14 july

this sucks. this isn't fair. i'm pissed at the world. i hate...i don't know.

got the news today that the doc thinks maryn needs the trach. i thought she was doing so well, fighting the good fight and all. but the benefit of the steroids is maxed out, and the squeeking is still there. we could try and make it still, but the odds are that she'd need it down the road. one cold or sinus infection over the next 6-12 months or so, and she'd be back on the vent. and that's the last thing i want for her, as the ET tube seems to make everything worse. so yeah, we're doing it. tomorrow morning at 7. gee, kinda overshadows the fact that she finally got to meet her big brother today. and that pisses me off too.

and stupid people who are selfish aren't helping the situation. sorry i'm inconveniencing anyone now that i have to think about my daughter having surgery. and jaime's so hard to take care of.

so please pray for a quick surgery, fast healing, and some peace of mind for her mom and dad. we just want to do the best thing for her.

Wednesday, July 8, 2009

Day 100

yup, my baby girl is officially 100 days old today.

Nothing big today. Doc thinks she looks even better today than she did yesterday. She's still squeeking, but it was a little better. They took her down from 3 1/2 L to 3L. Still don't really know what that means, but I know it's a good thing. She's still on her continuous feeds - doc doesn't want to mess with anything else until we pretty much know if she's gonna fly with the triple-H stuff or not.

yesterday's brain ultrasound was stable again. Doc things we might have missed the bullet on the shunt stuff. Definitely a good thing.

And Jaime is now obsessed with trying to eat my nose. Really.

Tuesday, July 7, 2009

7 july

well, we are still off the vent. Blood gasses still look good. They are going up a touch (43, 50, 53), but they are still lower than most of her gasses were while she was vented! She does have a touch of strider (squeeking from a floppy airway) and is working to breathe, but she's hanging! No additional oxygen, and they actually took her down a big on the high flow stuff (from 4 to 3 1/2. I have no real clue as to what that means, but it's just for those of you medically peoples out there.) She gets her last dose of steroids tonight, so tomorrow night is the next big hurdle. Things could get worse as they wear off. So I'm contemplating staying at the hossy overnight. We'll see. The doc says that if we make it through the weekend without having to be reintubated, that she should fly. I just don't know if I can handle a set-back at this point, so please pray for success!

Jaime has been just a dream. Last night, he went to sleep so well. I started to rock him and David went outside to pull his car into the garage. By the time David got back in, Jaime was out! I just love cuddling with him. Oh, and he didn't have oatmeal for breakfast!!! I went out on a limb and tried soggy cocoa krispies. it took a while, but he ate the whole thing!!!

Have I mentioned recently that my kids are the best?

Oh, and good luck at home Miss Zoey!!!

Monday, July 6, 2009

6 July 5:00

Still on the high humidity stuff. 4 litres, roughly 30% oxygen. She has not alarmed since getting switched over. In fact, her SATs have remained in the 90s. **knocking on EVERYTHING wood in reach**

It was so nice being able to pick her up on my own, when I wanted to. And if we got uncomfortable, we could readjust on our own. Such simple things can really bring such pleasure.

But of course, I'm still afraid to get my hopes up. If she's still off the vent come weekend time, we should be good. But she's been off for a while before. I desperately want this to work, and she's doing so well right now. So how do you NOT get your hopes up?

6 July 12:30

Tube is out. We are on humidified high-flow. Right around 30%. SAT-ing 97, heartrate of 157. Two blood gasses ordered for later. Those will be the biggest hurdle. then getting off the steroid. Doc says we should know if we're gonna fly by the weekend.

Saturday, July 4, 2009

4 july

fingers crossed. we have started the steroids (though IV, at least today).

3 july

same old same old. They are still sucking more and more gunk out of her. Nothing showing signs of infection though. Blood work, xray and labs are normal. So as of right now, the plan still is steroids tomorrow and extubation on Monday.

And she hit 6 pounds tonight!

Jaime seems to like being back home. We spent the whole day together. He'd follow me around. I survived a tickle attack. And he now likes to "go crazy" which means he kicks or stomps a lot while laughing. A little wiggling mixed in too. And he tries to say "go crazy." So cute.

Wednesday, July 1, 2009

happy 3 month birthday

Nothing too spectacular going on, but I wanted to publically wish my baby girl a happy birthday.

She's had fewer "episodes" since getting reintubated yesterday. Seems like putting it in a little farther/further (whatever) is bothering her less. She should be having an upper GI study done Thursday. Just a precursor to the possible g-button next week. Nothing big. And she was FINALLY decent for Nurse Amy.

I did some scrapbooking of my girl today. Got home and showed Jaime one of the pages. It was so cute. He started reaching for it. I asked him if he wanted to give baby sister's picture a kiss. And he leaned in to do it! I can't wait until I can let the two of them meet. yeah, that part sucks.

Oh, and she's officially gained 4 pounds since birth. 4lbs in 3 months. IDK, but sounds good to me.

And lastly, I must send a shout-out (yeah, I'm that old) to my buddy Logan who finally got to go home. Happy late 7 month birthday buddy! Glad you are where you belong.