Tuesday, June 30, 2009

30 June

I'm stressed, I'm cranky, I'm about ready to pull my hair out.

Maryn self-extubated AGAIN today. I was just holding her, and she decided that she'd cough it out. Now. I guess she didn't want to wait until next week. So gee, that was fun. This after days of her broncho-spasming. And I guess yesterday, they needed to bag her SEVEN times. This damn tube is starting to get to me. I completely understand the doc wanting to go with the initial plan (steroids on Sat, extubation on Mon) so that he's around when they do everything and so that they are fully staffed (holiday this weekend and all), but it's still frustrating. Actually, I'm beyond frustrated. I'm starting to get pissed. At the world.

And we are getting ready to head back home, so let's pile on the stress. I'm looking forward to it, but it's, well....stressful! I'm worried about taking care of Jaime without help. I'm still SO tired, no matter how much I sleep. And will I still be able to make it to the hospital enough? And what about when I have to go back to...ugh...work? What then?

Oh yeah, how about $$ too? My last check was about 3/5 of the norm. Thank God for savings accounts. And I haven't even begun to look at medical bills.

And our 5th anniversary is Thursday. David, God bless him, is wanting to go all out. I'm just so at the end of my rope, I just hope I can at least moderately enjoy dinner.

Wednesday, June 24, 2009

24 June

Good news and bad news. Bad news first.

If we end up needing the trach, we will probably also do a g-button at the same time. Since she's had the vent in for such a long time, she probably has quite the oral aversion, and if they do it at the same time, that's one less need to put her under anesthesia. This came as quite a shock to me. Don't know what really to think about it yet, but I do know I'm in favor of fewer exposures to anesthesia if possible.

And the little princess has been throwing fits recently. Bradied twice yesterday while I was holding her. And today, she was playing games with her SATs all day. One second it was 93, the next we were in the 50s. And she was really agitated today. Don't know why.

So-so news. We are probably looking at another 2-3 months in the NICU. No getting out around due dates for us.

Good news. We have a 5-pounder. Actually, she's 5-2 as of tonight. She hit the 5 lb mark last night.

Monday, June 22, 2009

June 22. Ugh.

Blech, blech, blech.

Bronch was today. Still a bit of "floppiness." And now we have notable swelling. Probably caused by the ET tube in large part. So yeah, she needs the tube to breathe, but it's also making it harder for her to breathe without it. Joy. Sooooooooo....two more weeks. Doubling her reflux meds, since that can cause swelling, and on continuous feeds instead of bolus feeding (supposed to lessen reflux risks). They'll extubate in about 2 weeks, and if that doesn't work, we are really looking at a trach.

Then she starts spitting more. I hope it's just due to the continuous feeds. But of course, I'm now worried about that too.

And the eye doc came in. As far as the ROP goes, she's stable. But he noticed a "discoloration" in an upper portion of her right eye. He doesn't think it's anything major - probably just like a birthmark or something - but he's going to keep an eye on it.

And ya wonder why I get completely depressed.

Sunday, June 21, 2009

June 21 quickie

Bronch moved to Monday. Fingers crossed. Hoping for some good answers. This one's gonna take a little longer, so I'm gonna caffeine it up and grab my book. Reading the TrueBlood books. Not as good as Twilight, but hey. A girl's gotta do what a girl's gotta do.

And also hoping for a good nurse. I know one of our favorites Amy won't be there, and I'm worried we'll get someone who doesn't know Maryn. Although after almost 12 weeks, I'm starting to wonder who DOESN'T know her. But there are some. So I asked the charge nurse today to give us someone who knows her, like one of our other faves, Auntie Cheryl. Yeah, she's not really an aunt, but she might as well be. There are a few nurses who I think we are going to officially adopt into the family.

Friday, June 19, 2009

June 19

Jaime is screaming. Fun night last night. He was up until midnight. Storm alarms went off at 230. Thankfully, HE slept through that. But he was up again from 430-630. WTH is up with this all of a sudden? But of course he was full of cuddles and kisses today. So even if I was mad at him (which I wasn't), I wouldn't have been able to stay so.

Maryn is still in her big-girl crib. Fingers crossed that she's able to keep her temp up. It's so nice being able to go in there and just lean over to kiss her forehead anytime, instead of waiting to get her out. Trying to squeeze into the isolette isn't fun. Seriously.

We are loving the new room. She actually gets some sunlight. It's big in comparison. So I spent 2+ hours holding her this afternoon. She slept the whole time. I just looked out the window and read my book while cuddling. So nice.

And she's starting to outgrow her preemie clothes. There are 2 outfits that must be retired (actually re-gifted back to the NICU) because her feet are already in the bottoms. I'm curious to see if she grew any this week, as she didn't last week. Was too busy putting on the weight. Which is 4lbs 8oz as of last night by the way.

She is having another bronch on Wednesday. PLEASE pray for some answers! Preferably ones that don't involve a trach.

Off to indulge in toasted almond fudge....

Wednesday, June 17, 2009

June 17

Back on the vent. She was on high flow nasal canula for about 3 hours yesterday, but there still seems to be a problem with her airway collapsing. This just sucks. We've tried to get her off the vent at least seven times now. They are going to give her more time again. Then sometime late next week, we are headed to the OR again so ENT can do another bronch, bring her back out of the anesthesia, then look at her airway while she's awake again. Joy of joys.

At least we did get some good news. Her ventricle size was definitely smaller. So there is a real chance she won't need a shunt. Small, but real.

Plus she got upgraded to the penthouse suite. Unfortunately, it's because our friend Logan transferred to a different hospital. But we now have the "long-timer" corner room with a window. Any Maryn's boyfriend was moved next door today with his brother too. WOOHOO.

And during all this, I think I pissed off off the karma gods or something. Not only did we deal with Maryn and the vent fiasco, but i had a flat tire when I got out to the parking garage. Then I broke a plate as I was going back into the house. And Jaime woke up in the middle of the night again. i need tequila. The good stuff. In large quantities.

Thursday, June 11, 2009

June 11

Not much to tell. Maryn has now gained 1 kg since birth. 3lbs 15oz or 1790 grams. At that weight, she might get to move into a crib sometime soon. She's still on the vent, and they are hoping to wait until late next week to try getting off it again.

Jaime is a sweet bug. I came home from Dr., meeting at the hospital, and cuddling my baby girl. He needed a cuddle too, and without asking, he also gave me a kiss! I love it when he puckers. So cute.

Me, I'm done with my OB appointments until NOVEMBER! WTF am I going to do? I can't go 6 months without seeing them? Isn't that too long? It just won't feel right! So I told Kim at the desk to call me if they had any job openings coming up. Give me an excuse to go in. You know it's bad when you know a large number of staff members, and they know you too.

Sunday, June 7, 2009

June 7 - part 2

Well, at least she didn't spit up much today. I still kinda wish they would just to the xray, just to make sure. And hell, we aren't paying for it any more. Not only have we way beyond maxed out the insurance out-of-pocket (MY hospital bill alone was over $80,000, not including any of the doctors' fees), but M should be approved by Medicaid any day now.

Currently, I'm very thankful we have a certain nurse again tonight. We haven't had any bad ones with M, but the one who took over today was iffy. She was from the PICU, and I could tell she was uncomfortable dealing with M. Don't know if it was her size, the fact that she's vented, or what, but I had to basically tell her to come in and suction her. She would leave the side of the isolette down and walk away. Umm, no. She may be a preemie, but she *could* roll over (she's sure been trying to). And she ain't gonna end up on the floor. Not while I'm around. Ya wonder why my headache went all the way into my middle back earlier.

She's up to 41 cm long (about 16 inches) and her head circumference was 30 cm. That was ok - not good, not bad. We'll see how the brain u/s goes on Tuesday. She did lose about 20 oz, but that's not a concern at this point for me. Heck, the way this kid poops, she could easily poop 20oz at a time! Seriously. She did it again in her bath yesterday.

As for the monkey, he's flinging poo too. Has started to pull hair and grab at Nana's face. It's probably typical 2-year-old stuff, but it still bothers me. He's better with me about it, especially if I tell him "gentle" a lot as he's reaching for me. And he would not go to sleep tonight, so I had to put him down. Let the screaming ensue. And I'm a horrible mom. I couldn't help but chuckle. He was definitely crying his "I'm pissed" cry.

So I'm a cranky mess. My arm hurts from the Implanon. And lexapro is crap. I am so needing a night out with the girls.

The Charleston

Two steps forward. Two steps back. Ugh.

Bronch went as well as could be expected. They didn't find anything abnormal. No narrowing below the vocal cords other than a little swelling that was expected. She came back on the nasal canula. I LOVED being able to see those chubby cheeks. But she was really struggling to breathe. A few hours later, she got really pale, and her nurse (the WONDERFUL Amy) called the NNP. She just looked miserable, with eyes that just screamed "mommy, make it better." Just broke my heart. Blood gas to see how she was doing. It came back high, so they moved her to CPAP to help her out. Still lots of struggling, but she wasn't having a ton of brady or desat episodes and her color did improve a bit. The next day, Amy had her again. Thank God. Her CO2 levels were going back up, and she still was having lots of retraction and squeaking. Yeah, technical term "squeaking." Right now, I can't remember the actual term for the life of me. Even if I could, I'm pretty sure I couldn't spell it! So ENT came by and looked above her vocal cords this time. Not so good. Excess swelling there. Could be reflux, could be more. So they put her on prevacid to see if that will help. But in the mean time, she's back on the vent for roughly 2 weeks. And if the prevacid doesn't seem to help, we could be talking tracheostomy in a few weeks.

She did manage to double her birth weight as of Saturday. Even more - up to 1610 grams (790 at birth). So she's 3lbs 9oz now. Yay! But of course, the step back. She was spitting more again yesterday. Could be nothing, could be signs of tummy troubles again. If she spits more today, x-ray it is. If that is the case, PLEASE let it come back ok. If not, I am pretty sure I will go over the edge.

Tuesday, June 2, 2009

June 2

Not much news today. She's up to 3lbs 6oz, but I figure at least 1oz of that is the IV contraption attached to her left foot. But that's still a decent weight gain. Once she his 3-8, she will have officially doubled her weight since birth. Brain ultrasound was showing things were stable. The new neonate on our case mentioned there is a chance she wouldn't need a shunt. But it's too early to tell for sure. Optho came by again. Her eyes are a touch worse (zone 2, stage 2). I'm not surprised. He's just going to watch her closely. But if she hits a stage 3, we're going to start talking laser surgery. And the ENT is going to be doing the bronchoscopy some time this week, but we don't yet know exactly when.

Jaime is trying so hard to talk! Now if someone can come translate for me, I would be eternally grateful. I have no idea what he's saying most of the time. But I just pretend like I do.