Wednesday, November 18, 2009

(^%$^%$)(^)*& continued

She got worse overnight. I got a call shortly after David got home (my mom was there). Her hemoglobin was low. She needed a transfusion. Do I give consent? Ummmm, hellllllloooooooo? If it's going to help save my baby girl, DO IT! NOW! STOP TALKING AND GET TO WORK!!!

I get there and she's up to requiring 100% oxygen to keep her SATs up. Um, crap. I really don't have any words to describe how my heart sank. It was a cross between devastation, panic, disbelief, anger, and a few other things I can't quite identify right now. Because of that, they were transferring her to the PICU. Ok, but do I seriously have to get to know nurses on EVERY freaking floor of this hospital? Don't get me wrong, I wouldn't consider taking her anywhere else. And they are wonderful. I'm just at my wits end.

We get down there, and Dr. D is awesome. I hadn't met him before, but he had a preemie himself. So he actually understood everything I was dealing with. Both medically and as a parent. He did put her back on the vent (ok, just stop on my heart while it's lying on the floor), but I did agree that it was best for her. That way all the energy she was using to try and breathe could now be used to try and get better.

And God bless the angels that were watching over her. Yeah, like I said, all the nurses, etc are great. But there are some seriously special people there. As they were getting Maryn settled in, Steph, one of my favorite RTs from the NICU stopped in. Kid you not, I ran to her. Bawling, but it was so comforting to know that someone who knew her, who knew how special and wonderful she is, was going to be watching out for her. If I was concerned about her care before that, I now had confirmation that Maryn would receive the BEST care she could get.

Calls and texts from nurses. Ok, so they aren't just her nurses any more. They are family. Maryn's "aunties."

And then Erica and Julia from the lab stopped by. Wanting to know what was going on. Do you know how it feels when someone who was a complete stranger 8 months ago is honestly concerned about your baby? And to know that they just aren't saying it to make themselves feel better? No, they really care. I have no doubt. And the lady from the cafeteria (forgive me, I forgot your name! Bad Tasha!). You can always make me smile. You know me by name and will just chat if I need to. Sorry if y'all don't like seeing your names here, but you are special to Maryn, to me, and to my whole family. You all deserve to be recognized. While I wish we had all met under better circumstances, I thank God for giving me not only the gift that is Maryn, but also the gift of all of these wonderful people. I could not do this without you.


Yup, the title pretty much covers it.

Maryn's back in the hospital. Pneumonia. Joy. Seriously? WTF? I am so scared and so damn mad. It took just about every ounce of strength in my body to not tear my hair out. Why does this keep happening? Hasn't she been through enough?

And when are things going to start working out so that I don't have to feel like a complete failure as a mom? Dammit, I should have brought her in yesterday when I was concerned about her coughing.

Tuesday, November 17, 2009

People suck

Ok, so as my mom would say, "I'd like to say it can't get any worse, but I don't want to tempt fate." Things just completely suck around here.

Before anyone gets too worrried, the kids are ok. We are all fighting colds, but nothing serious. And they both were able to get the H1N1 vaccine a few weeks ago. So that was a big sigh of relief.

Jaime is now obsessed with "banana" and has learned to say "panda" and "bun." But the best is when he smiles and says "butt" and slaps his. What a goof.

Maryn had a decent appointment with the aerodigestive clinic. Lungs are a little wet, so she's back on a diuretic, but that's nothing new for us. It's a big cycle it seems. She's spitting like a fashionista redecorator, but again, nothing new. I swear I'm opting for hardwood floors whenever we get a chance to move. We are supposed to use the same bottle to feed her, to see if that helps make her fight a little less (yeah right, but we'll try!). And she's been running a low-grade fever for a few days now. Hovering right around 100*. If she still has it on Thursday, the doc wants us to bring her in just to make sure. But for now, we are just keeping on eye on her. She's not really showing any other signs of illness.

Now for the fun.

My "boss" at the middle school is treating me like crap. After 10 years, I guess I suddenly don't know what I am doing. Supposedly, I don't plan, I don't motivate kids, I don't set any guidelines. Ever. And she know that I never do any of this after spending 30 minutes in one class on one day. (Of course, listen to a student of mine, and she'd tell you a different story. Courtney came up to me yesterday and said "Mrs. LP, I miss you. I wish I was still in French. I am GOING to take French next year one way or another." But I had nothing to do with that I guess. At all.)

Then we get word that Coventry (insurance) and Millard have denied all nursing care for Maryn. And they say there are no more appeals we can go through. I was told that what she needs is considered "custodial" in care, not "pallative." Aka - we can show just anyone how to take care of her. It's not hard. This despite the three letter we have stating otherwise. From a pediatrician, a neonatologist and a pulmonologist. Guess those guys don't know what they are doing either.

AND they (insurance - thereby Millard) are trying to deny the claims for Jaime's Developmental Clinic visits. Because "developmental" issues are not covered. Seriously? Can a school district get any more hypocritical? But it's not just developmental in coverage! His ortho sees him for a slight spine malformation and his protrusion of his feet. The dietician sees him to make sure he has enough of the proper foods to eat since he was delayed due to his cleft (a MEDICAL condition). The neurologist sees him to see if his issues are caused by brain and/or chemical deficiencies. The geneticist sees him to test for a genetic cause for all his symptoms.

People have asked me if I'm taking this out on Millard when it is really just an insurance issue. But here's my thought. Millard decided this was the best company for it's employees. Millard agreed to THIS policy. Therefore, they agree with what the company says. They are just as guilty, if not more. That said, if this is the way this district wants to treat its employees, then this is NOT the place for me. so if anyone knows of a decent job in the Omaha area, please let me know. I'm about to go crazy here.

Saturday, November 7, 2009

7 November

Will someone please tell me how to get Baby Girl to eat? She does lots of "pretending" but no real sucking. Stinker.

We got Jaime on WIC until Maryn turns a year old. Should help out. We can get milk, juice, eggs, cereal, etc for him. Now if we can just get HIM eating eggs, cereal, etc.

Tuesday, November 3, 2009

Post-Halloween activities

Ok. I'm gonna try to beat my October count here. Think I can do it? :P

Short version of Maryn's birth story is up on my facebook account. Check there if you wanna know. At least until I get my act together and get that damn book written. I figured I've always known I wanted kids, and Lord knows we've had a tough time of it. Maybe someone out there would get something out of our story. We'll see...

Maryn was an adorable Smurfette for Halloween. Yes, I'm sick and twisted. But this was her excuse to be blue. And this time it was ok. Long yellow braids, blue sleeper. Quite cute if I say so myself. She just kept looking at me like "Mom, WTF did you just put on my head?" Jaime on the other hand, was, um, "less enthusiastic." In fact, he screamed and hid as soon as we put his costume on. He was a monkey. I thought it appropriate since he's climbing on everything, and hes current favorite word is "banana." You think he'd say it while dressed as a monkey? Of course not.

Then yesterday, since he was repeating BANANA over, and over, and over, and, well, you get the idea, I gave him an actual banana. He would not let go. At all. For about 2 hours. I finally had to pry it from his hands when I noticed (while I was feeding Maryn mind you) that he had peeled half of it and decided it would be fun to grind it into his pants and the carpet. Oh joy. Really, it wasn't that bad, but I had to chuckle.

Latest medical news...
Jaime - lumbar puncture on the 10th to check for a neurotransmitter disorder. Blood tests to check for a different genetic mutation. Vision teacher FINALLY came out to see him. Although I didn't see much in the way of help from her this visit. Wants to walk still. Doing ok with speech preschool, although my mom reports that they don't seem to comprehend his vision issues.
Maryn - shunt is stable. I *think* her spitting is getting a tad better. Watch, tonight will be a waterfall just because I jinxed it. But she's eating worth crap right now. 45 minutes and I might get 2-3 ounces in her. So I'm concerned about dehydration.

Random us news. We want to sell the house. Ok, well, I want to sell the house. Move to Papio or Millard. So PLEASE send all friends/family looking for a cute little house in a nice neighborhood our way!