The sickies

My boy is sick.  Like throwing up, sleeping, not eating, fever - sick.  I just want to make him feel all better.  I'm not used to this, as he's generally a healthy kid.  I know with him in school now, he'll be exposed to a bunch of new germs (like the lice that were in his classroom last week - YUCK).  But I don't like it when my Buggy is sick. 

And when Buggy is sick, that just begs the question of when is M going to get it.  And you KNOW if J is running a fever of 101 and throwing up, that if M gets it, we are screwed.  She's just getting over some crud that came up after her bronch/GI.  Still on O2 at night.  But if she gets sick...I don't even want to think about it.  We almost spent last Thanksgiving in the hossy.  I don't want to do that again.

Revolving door

That's what I think this hospital stuff is.  Because as soon as we get out, we are back here soon enough.  Today was M's bronch and GI scope. 

Purpose of the bronch:  see if the dialation from May held.  See if her airway is improving.  Dialate further.  Outcome of the bronch:  airway did maintain some of the dialation from May.  In May, they couldn't get a 2.5 mm flexible scope down her airway - the same they used on her the night she was born.  Now, they got a diameter of 4.3.  More than I was expecting.  She does have a decent granuloma (random bubble of scar tissue) growing in her airway that will have to come out at some point, but it's not urgent right now.  Follow-up with Doc Q next month.  We will repeat the bronch/dialation every 3-4 months.

Purpose of the GI scope:  see if there were any glaring issues that could be causing her recurrent spitting.
Outcome of the GI scope:  Fundo is still in place and looks pretty decent.  Nothing obvious that is causing her spitting.  Will wait until we see the results from the biopsies say.  Could show inflammation that could cause spitting.  If not, we go from there.

Ok, now that all the medical crap is out of the way... Not to shabby of a day.  Today, other than the constant headache from yesterday (we'll deal with that later), was ok.  After working 1/2 day at school, off to the hossy.  M was cute and happy as ever.  I have to say it was "nice" not being so nervous.  We've gone through both of these procedures before, so not much "unknown" to deal with.  The tylenol made a mess, but now it's pretty easy to change out her g-button gauze.  And back she went.

I don't know why I was so anxious in the waiting room.  It wasn't nerves, but I was on edge.  So thankfully, we had visitors to keep me occupied.  My mom was there - of course!  (My dad would have been too, but he was at our house with J.)  My sis and niece showed up too.  With Starbucks.  Dude, that stuff is better than heroin!  Ok, not that I know that from experience, but you get me.  And Phyllis, a former NICU mom with me, came to check on us.  Her sweet boy Logan is at another hossy here in town, and she came by to see M.  Man, I didn't realize how much I missed her.  It's nice to have another mom that has gone to hell and back a few times understand the sarcasm and humor that accompanies it all.  And she brought M a purple horsey.  :)

The whole ordeal is a bit like deja vu.  In the waiting room:  Steph and Jodi from RT.  Anthony the pastor.  Doc H from ortho.  Doc O and Julianne from genetics.  Doc P from neurosurg.  Doc C from peds surg.  Crappo Doc L from neuro (we won't see him any more).  Then we get assigned to 412 which is where we were in June, and next door to where we were with my niece 2 weeks ago.  Our nurse was my niece's nurse on that visit. 

Coincidence?  I think not.  I think we are simply here way too much.  37 visits to be exact (according the pre-op nurses).

Money needs to grow on trees.

Whiny mommy.  This time, it's about money. 

When David and I decided to have kids, we knew money would be tight.  Food, diapers, wipes, doctors' appointments, etc.  What we didn't realize was that there are tons of "hidden fees." 

We didn't know that J would require special bottles that cost $9 each.  We didn't know that he would have SO many doctors' appointments (plastic surgeon, dentist, genetics, ENTs, pedi, neuro, optho, audio, PT, OT, feeding specialists....), thus the co-pays.  We didn't know that we would have to buy him special shoes - the $10 ones from Walmart just won't cut it with him.  We didn't know that insurance was going to deny his leg braces because it's "developmental."  (Don't get me started on they hypocracy of that one.  We'd be here all day.)  We didn't know J would still be in diapers as he approaches his 4th birthday.

We didn't know M would spend her first 5 months in the hossy.  We didn't know insurance would deny the claim for using nitric to save her life because it was not a proven drug (asshats - I'll show you the proof.)  We didn't know we'd be at the hospital so often with her that we'd learn the coffee-shop lady's name.  We didn't know she'd come home with so many machines.  We didn't know that said machines would use SO much energy (our electric bill has nearly tripled since she came home).  We didn't know we'd be so used to so many medications that we can spell them out for the doctors/nurses.  We didn't know transportation would become an issue, as my car cannot fit them both with all the bags they require.

We didn't know how financially taxing children could be.  We struggle from day to day.  I must thank God for medicaid, as we would really be in a world of hurt without that.  But sometimes, it's just not enough.  How do you explain to people that you need a new car?  Not just because you are tired of the one you have, but because you need the space for your children and their machinery.  How do you explain the need for a bigger house?  Not just because we are tired of this one or don't like it, but because with all of the kids' "stuff," we are literally tripping over their machines and contraptions.  Which bank is going to listen to those pleas?  Which utility is going to understand a tripling bill just isn't in our budget?  What do we cut out?  Soup for J?  Yogurt for him?  After all, those are some of the only things he'll eat.  Or do we go without a med?  How about the mortgage?

Ugh.  My kids are worth every cent, every headache, every argument, every smile.  I would do it again in the blink of an eye without hesitation.  And I don't mind going without all the fancy crap most moms my age have.  David is great about not requiring much for himself either.  But for once, it would be nice to NOT have to worry about how to pay for their necessities.

Don't go there. DON'T go there!...She went there.

And yet again, her timing is impeccable. 

M is scheduled for a bronch and GI scope next Wednesday.  All fine and dandy.  They want to see if her airway dialation from May held at all and perhaps get some sort of idea as to why she is yet again spitting like a pro-wrestler.  Her specialty move?  Regurgitating formula down your shirt from a foot away.  You become so distracted by the slightly sweet smelling, soggy mess, that the Princess has time to make her move for her favorite toy.  She hides her HME.  But I digress...

So anyway, she needs to be healthy.  Someone let the cat out of the bag.  The girl caught on to the plan.  And now, she's coming down with whatever her brother has. 

J got sick last week.  Fever of over 102.  Green crap coming out his nose.  A cough that has the neighbor's dog curious.  Lovely nurse just kinda went "oh, that's not bad for a kid his age."  David then asked about his seizures.  "What?  He has seizures?  Let me check."  Oy, remind me to only call when our regular nurses/docs are in office.  They want to see him.  Strep culture is negative.  But do you think the on-duty doc would do a flu swab?  Of course not.  That would make sense, especially considering we have a medically fragile preemie at home.  Someone needs a dork-slap.

So, J is working on getting better.  He throws in a seizure at school just to keep everyone on their toes.  And M, enthralled with her brother as always, has decided she wants to be just like him (minus the seizures, thank God.)  All last week, she had more secretions than usual.  But last night, the girl went yellow.  Not just a little.  Not for one suction episode.  Yellow. 

Shit.

School boy

So a whole month ago, my boy started school.  I was SO excited for him!  I knew that it was going to only help him.  J was going to interact with peers, learn so many new things, read books, play with new toys, work on walking, etc FOUR DAYS A WEEK.  I couldn't wait to see him progress.  I was grinning from ear to ear.

Dad, on the other hand, was terrified.  Were they going to take care of him?  What if the bus driver forgot him?  What if kids teased him?  Dad was in tears on the first day (and second).  I think he's coming around now though.

I had to take him out to select his own backpack.  I wanted the Wiggles, but I couldn't find one for him.  Huskers?  Batman?  SpongeBob?  Nope.  He wanted Spiderman.  Once he saw that one, that was it.  End of story.

August 23.  The day of reckoning.  For the kid who usually sleeps until 1030, getting up at 630 was a rude awakening.  Literally.  The boy was tired.

Daddy got him on the bus.  Please don't mind Dad's completely awful swim trunks that doubled at shorts that day.

All in all, it was a success.  J had a good time.  He's learning so many new words.  He's becoming more independent with walking.  He wants to go to school - the one day we couldn't do due to appointments, he kept looking at his backpack and asking for the "buff."  That's bus for you non-fluent types.  We keep in touch with his teachers through newsletters, a notebook, email, texting, etc.  Yeah, I'm one of "those" moms.  My boy is growing up.  And this mommy just couldn't be prouder.

Teeth!

Mmmmmm, finger-lickin' good.

So I FINALLY got the shot.  Her first tooth poked through back in April, and you'd think I could get a picture of it before now.  However, no such luck.  But now, after months of pictures, I see teeth!  She actually has 7 total now.  I know you can't see them all, but still - WE HAVE PROOF OF TEETH!

Maryn's baptism

Yeah, it was 2 weeks ago.  I know, 20 lashes. 

It was small and sweet.  Attended by us, my parents, my sisters, brother-in-law, and my niece.  I thought one of the Deacons was going to do the baptism, as I didn't care.  As long as it got done, I was happy.  As we walked in, I see Father Dan waiting for us.  That was a nice surprise.  We all stood around, instead of sitting, standing, rah-rah-rahing.  Again, nice.  Father Dan was very gentle with her.  And it was refreshing to see someone treat her like a person instead of just a cute little thing.  He talked to her through the entire ceremony, always warning her what was going to come next.  "Ok Maryn, I'm going to put this oil on your head now.  Nice and gentle." 

Afterwards, we posed for a few pictures.  Of course, all the good ones are on a few other cameras.  But M looked so cute in her dress (a cheap dress at that!  I found it for less than $10 at Old Navy!).

And for only the second time in her life, we were able to get a real FAMILY photo.  The beautiful church was in the background, and despite J sleeping through it all, I couldn't pass up the opportunity.  Sorry for the poor quality.  But this was so special for me.  A family.

We headed back home to eat yummies made by Nana.  I can't tell you how thankful I am for my mom, and for her loving to cook/bake!  Ignore the messy stove.  I'd rather spend time with my kids instead of cleaning!  Dreamscicle cupcakes.  Because she's a dream come true.

CDC appointments

No, it's not the Centers for Disease Control.  To us, it's the Children's Developmental Clinic.  One of those "lovely places" where you go for a big pow-wow on your kid and a gazillion docs are in-and-out for hours on end.  Ok, maybe not a gazillion, but I was completely serious about the hours!

Arrive at 8 AM.  A touch late thanks to some weird Omaha traffic.  I know it's rush hour, but I've NEVER seen it like that unless there were accidents.  Oh well.  Not like I had a hover craft handy and could zip my way past everyone. 

After all the initial blah, blah, blah, get the kids stats (J - 34 lbs, 39 inches.  M - 23 lbs, 29 inches.) and get locked away down the hall.  It's nice that we don't have to pick the kids up and transport them from room to room, but man, it sure get stuffy, boring, and SMALL in there.

So the general info on J:  Diet says we need to watch his protein, calcium and vitamin D intake.  Bump 'em up a notch.  OT wants us to think again about taking him to that other preschool.  Also we're looking into a chair for him.  Like a big stroller or mini-wheelchair.  Darn kid is kinda heavy to be toting around on my hip for too long!  Pedi said Robinul for drooling (NOT gonna do it.  Sheesh, there's no medical necessity for it!  Just social.  And um, if you're worried about my kid drooling, how about all those kids that pick their nose and eat it?).  Neuro wanted to check Keppra levels - all ok.  Ortho & PT say keep it up.  Walking with the walker is good.  No orthotics now.  Psych says head banging could be so many things.  Ignore him completely when he does it.  He won't severely injure himself.  Genetics is clueless. I will get some more testing done with me, but I told them that barring an 80%+ chance of figuring out what is going on with him, he will NOT be going through anything more invasive than a blood draw from here on out.  He's been through enough.  And he's awesome, so what's the point?

M's turn:  Neurosurg said see ya in a year unless she shows symptoms.  Ortho thinks things look ok, just keep an eye on her ankles.  OT wants a chair for her to recline and play in.  PT has us looking into a wheelchair.  Pedi needed to check her thyroid levels since she gained so much weight since she turned one.  Never mind that her fundo was 2 months after that appointment, so she stopped regurgitation 1/2 the calories we were putting into her!  Duh.  Social work checked in.  I offered to be a political nut letting "our representatives" know how they are screwing families with their "don't have a clue how it really affects patients" Medicaid changes.  Asshats.  Neuro FINALLY gave me the CP stuff.  Not that I wanted my girl to have it, but come on.  I'm not stupid.  Her signs are textbook!  Right weaker than left.  Shaking of the foot.  Clenched hand.  Weak eyes.  Blah, blah, blah.  She's at highest risk for lower extremity problems (ie - her legs, which we already are well aware of), gross/fine motor delays, learning disabilities and attention issues.  Her risk, while still a possibility, for cognitive problems is much smaller.  It sounds like a downer appointment, but it really wasn't bad.  I kinda knew what was coming, and he did end on a more positive note.  Besides, I did ask for it.

After 5 hours, go downstairs to rehab for carseat and wheelchair stuff.  At least M like the eye candy there.  The guy was on her left, so she actually turned her OWN HEAD to the LEFT to look at him.  I said for the well-being of my daughter, he now needed to live in her room, only on her left side.  :)

After another hour in rehab, on to the lab for the blood tests.  Yeah, that was fun.  At least JJ was there.  She was one of our favorite lab girls when M was still NICU.  She kinda screeched when she saw M, not wanting to believe she had gotten that big.

And after 45 minutes (now 2:45 pm), I passed J off to David.  M and I took Nurse Lynn home.  David was taking J to get a hip and spine x-ray.  Just a follow-up for scoliosis.  Doc noted a bit of a curve 2 years ago, but it's not really getting much worse.  We'll hear back on that in the next week or two.

We all came home and crashed.  I would have made it, but I accidentally skipped the coffee bar that morning!  I'm sure there's more that I'm missing, but I'm still fried.

OYA - homecoming

One year ago, we brought our miracle girl home.  After 150 days, she was coming home.  We had enough wiring to at least stretch across the county.  Would we remember how to work all this stuff?  Would we be able to keep her alive, like the amazing docs, nurses, and rest of the staff did?  Man, I didn't know.  They sure trusted us a WHOLE lot more than I thought we deserved.  But one thing I did know for sure - she couldn't possibly have been any more loved.

Fast forward.  One year after coming home, she's still showing she's such a fighter.  At least five hospitalizations since then.  Two major surgeries.  Back on the vent with pneumonia.  You know, it's become a bit of a joke - how long can we be at Children's before we see someone we know.  But through it all, she smiles and flashes those gorgeous blue eyes.  Yeah, our life isn't as easy as we had planned.  But it is so worth it.  Every ounce of stress can't touch the blessings this sweet miracle has bestowed upon us.  We are so lucky.

Baptism coming

Maryn is getting baptized in the Catholic Church on September 1.  It's important to me.  But some people are concerned that I'm forcing this religion on her.  Here's my take....

She was baptized to God the night she was born.  A very special Lutheran pastor had the honor.  But yes, I still want her baptized Catholic.  It is the religion of my family, of her namesake.  But I don't have any intention of "making" her Catholic.  That is up to her.  As she grows, she will learn the ways of many religions.  She will get to choose where she fits in best and what seems right to her.  She will make the decision on her own.  I just want to keep the door open for her if she does decide Catholicism is the direction for her.  I'm giving her that option, so it's not a big headache/hassle later on.

But no matter her choice as she grows, my daughter will know the love of her parents, her family, and the Lord.  Every day.

Welcome back

To work.  Joy of joys.

I wish it were that simple.  Back to work for just over a week now.  And how do I get greeted on day 2 with students?  A phone call.  It was from home, so like we had discussed, I let it go to voice mail.  If it's an emergency, don't leave a message and call right back.  It went to voice mail, so I figured I'd check it when I had a chance. 

Wrong decision.  Jaime had another seizure.

Just before breakfast.  Rigid for 20-30 seconds.  Again.  Fuck.  I talked with MIL about how he was doing shortly afterwards.  He was out cold for only about 30-45 minutes post-seizure this time.  While that's a big improvement, I'm still pissed that it happened at all.  His pedi knows about it now, and she suggested we talk to neuro.  We have an appointment with neuro on the 25th.

And now I was supposed to think about teaching too?  Yeah right.  Priorities people.

Into August

I hereby admonish myself for being a slacker.  There, are you happy now?  20 lashes you know.

Actually, things have been pretty crazy.  And now I'm stuck back at work when, of course, all I'd rather do is admire my kids' latest accomplishments.  So the last 3 weeks in a nutshell...

1.  Maryn's benefit was a HUGE success.  I didn't expect nearly that many people there.  It was so packed I sadly didn't make it around to everyone.  But M was a star.  Just hanging out the whole time.  Cool as a cucumber.  Figuratively at least, as the weather and amount of people there made the room feel like a sauna.  And big brother was a hit too.  Later in the evening, he walked me over to the band and started dancing in front of the lead singer.  So cute.  First order of business after the event was over was to get the Princess a new car seat. 

2.  New car seat needed because since her May surgery, she's become a chunk.  Over 22 pounds now.  In fact, on the REGULAR baby chart for a 16-month old, she's at the 33%.   And she's only 7% for length.  Ugh.  The dietician - NOT her regular one - wants to switch her to a different 30 calorie formula (right now she's on 24 calorie).  WTF?  You want my kid to be obese on top of her other issues?  I got her to come down to a 27 calorie mix, then asked my pedi about it.  She checked further, and their rationale was M's going to need the additional calories as she moves around more.  Um, right.  M doesn't walk.  She doesn't crawl.  She doesn't roll over.  WTF kind of moving are you talking about?  Seriously, it could be years before she's mobile, and you just want to pack pounds on her in the mean time?  No way!  So Daddy and I have talked, and we aren't going to up her calories right now.  When she starts moving, sure.

3.  M is eating 2 stage 2 baby foods a day.  She hates it.  Lots of gagging and retching, especially as we get started.  And it sometimes leads to her spitting up again.  Which is not supposed to be possible.  So something is up with the fundo.  Fuck.

4.  J has been seizure-free since we started meds.  I don't like the meds, but if it helps him, Mommy will deal.

5.  He has also be chatting up a storm.  He has reached that mimicking stage, so please be careful what you say around him!  You never know what's going to come out of his mouth.  Oh, and those questionable things you think you are hearing are "sock off" and "faker."  Try not to giggle too much.

NICU on Discovery Health

So there is this new program on Discovery Health about life in the NICU.  It premiered tonight. 

And no, I did not watch it.  I know it's a good thing, to try and educate the public about things like this. Heck, I wish I understood it more before our life in the NICU.  Maybe it would have been less of a shock.  And I'm sure the stories have "happy endings."  But that's not real life.  So how true is it?

I don't know if I can watch.  I don't know if I need to.  I lived it.  I breathed it.  For months.  And honestly, I don't know if I ever want to have to go back through that emotional journey again.  Ever.

And that's ok. 

Disclaimer

So it has come to my attention that a few "strangers" might be checking this blog out in the near future.  And maybe a few others that are unexpected.  Thus, I need to make a few things clear.

#1.  This is a venting forum for me.  Life is tough for everybody.  This is one of my ways of dealing.  If you don't like what I have to say, click the little red X in the upper right corner of your browser.

#2.  I'm gonna cuss.  I rarely do it in real life, but this is different.  Sometimes, there aren't any other "polite" words that get the point across.  Deal with it.

#3.  I am VERY passionate about several things.  Most importantly my kids, their lives, their rights, and the fact that they deserve the world.  What's best for them supercedes what's best for ANYONE else.

#4.  I try to stay away from politics here.  But I don't always succeed.  Know this:  I'm 100% pro-life.  And I will say God forgive you if you are not.  I don't know if I can.  I am also a pro-gay rights, anti-gun, pro-self responsibility, pro-fiscal responsibility, anti-death penalty Republican.  Keep that in mind.

#5.  Feel free to leave comments.  Please do so with some sort of identifier.  I HATE "anonymous."  Please also make them respectful towards my kids.  You don't have to like me, but my kids, as I've said, deserve the world.  And Mama Bear will fight to the death for that.

#6.  Enjoy my the stories of my beautiful children.

Benefit for Maryn

Ok, so there is this benefit for M that is going to be on the 23rd.  Here are details, as I understand them.  I'm really just letting others do their thing with it, so I'm pretty clueless, but here goes...

Who:  Anyone is invited.  Sponsored by Page Gardens.  Proceeds will benefit Maryn, my 24 weeker who is now 15 months old.
Where:  Stonebridge Christian Church (about 1/2 mile north of Maple on 156th)
When:  Friday, July 23 from 5:30-8:00 pm
What:  Donations accepted at the door.  Donations will get you raffle tickets as well.  You choose which prize(s) you want to be in the drawing for.  They include movie passes, restaurant gift cards/discounts, a month of martial arts training, salon gift cards, skin care products, etc.  Also, there will be music and food (Thank you Red Zone Barbecue, Rotella Bakery, Delicious Bakery!!)

I will be posting a public thank you to all corporate donors around the time of the benefit.  They are still coming in.

If you have questions, feel free to post them here, email me, or search "Benefit for Maryn Page" on Facebook (my sister set up that page - thanks Bear!).  Same goes if anyone would like to donate good/services for the benefit and/or raffle.

Out.

Dazed and confused.

J had another big seizure.  It was awful.  He was in my arms for the whole thing.  One moment, he was playing "mama, da-mah (that's Jaime for you non-fluent)."  The next moment my beautiful boy was completely rigid, contorted and terrified.  I just kept telling him "mama's here.  Mama's got you."  I wanted to make him feel better.  The whole thing lasted maybe 30 seconds.  I refused to let him go, even afterwards when he was completely unconscious.  He needed his mama.  Moreso, I needed to hold him.  After a call to the doc, David took him in to the ER. 

Well, either there were lots of emergencies, or they were having one hell of a coffee break.  Nearly 2 hours before I got the call from David.  I was not a happy camper.  So here's the plan - after talking to his neuro, we are starting a regiment of Keppra.  I hate the thought of him being on meds, but I don't want him to have to go through that hell again just because Mommy doesn't like drugs.  That's not fair. 

David got home with him right around 10 pm.  I guess he was asking for Mama the whole time.  And the moment I saw him, awake and semi-content, asking for Mama still, I burst into tears.  I don't think I've hugs or kissed him that much since the day he was born.  My precious, precious boy.

Some people might wonder what the big deal is.  Lots of kids have seizures.  Let them run their course, and odds are kids will out-grow them.  I wish it were that easy.  Since we don't have a diagnosis for J, everything hits me like a punch to the stomach.  Is this going to be something that kills him?  That I can't deal with.  I won't.  Not an option.

Suggestions

There are a lot of well-meaning people around.  Ones who offer to help out, watch J, bring food, just keep us company, etc.  It's a blessing to know that so many other people care about my kids, even some people who have never met them.  I am so grateful.

But every now and then, some people just need to STFU.  Odds are, no one that reads this, in case you are wondering if it's you.  But in case you need details....

- Don't pity us.  Yes, taking care of our kids is not easy.  But it is worth it.  One smile from M, or having J say "mama" as I walk in just reiterates that.  Too many people take such things for granted.  We don't, partly because we have busted our asses off to achieve those small milestones.  Showing up then having to wait in the car because you "don't know how we deal with it" just proves you are the ass I thought.  It's ok to say you are sorry to hear that M is sick again, or that J needs testing.   Just don't feel sorry that they are my kids.  I wouldn't change that ever.

- Don't tell me decisions I make for my kids aren't appropriate.  They are MINE.  I will listen to advice, etc, but don't get offended if I choose a different path.  I get to hear all sides, and all advice, from all doctors, specialists, family, friends, nurses, etc.  Odds are, you only know a portion of their thoughts.  As their parents, we know WAY more about all issues surrounding their health and development than any lay-person does.

- Keep your "it's my body" BS to yourself.  I fought for M and am damn proud of it.  And despite the risk to my life, I'd do it again in the blink of an eye.  She deserves to be around only people who think she is/was worth fighting for.

- Do not judge me if I get uneasy or panicky around pregnant women, newborns, or even TV shows (ie - A Baby Story, medical dramas, etc).  I understand all too well what is going on.  Been there.  Done that.  I still feel that fear. Daily. On my own.  Don't care to relive it just because you find it entertaining. 

- If it get sad about the "new normal" or "Holland," just give me a hug and let me be.  I don't need you arguing the awesomeness of my kids to me.  I know it better than anyone.  But that doesn't mean I can't get upset from time to time.

- Do NOT take my jokes about mass quantities of tequila seriously.  Really.  You must not know me at all if you think I'm going to become a drunk like that.  But if I want a drink or two, that's ok too.  It's not like I'm doing even that every day.  Hell, or even every week.  Most of the time not even every month.

-It's ok to live on chocolate, soda, coffee and cake for a few days if I want to.  I know my food groups.  I understand the consequences of ignoring them for a few days.  It will be ok.

Now off to take on some of that chocolate.  Saving the coffee for the morning.

June is on my shit list

Is this month over yet?  Please?

Ok, so M's SATs were getting worse and worse.  We took her back to the pedi Friday.  Growing lots of crap out of her trach, so we are doubling it up on the antibiotics.  Omnicef and bactrim.  Plus adding predinsone to the mix.  I don't want my kid to be worse, but I must admit it was reassuring when the doc told me she did hear just a bit of the wheezing I kept hearing over the previous 48 hours.

Then, just to make things fun, I get a phone call from my dad while we were in the pedi's office.  He was watching J for us.  And it looked like he had another seizure.  No shaking, but a lot like the other time I worried I missed something.  Playing like usual, tune out for a sec, then notice he's snoring on the floor.  Out like a light.  And won't wake up.  At least he was "back to baseline" within 90 minutes this time.  His best showing thus far.

Fast forward to Saturday morning.  Papa was back again helping out with the kids.  He wakes me at 7:15.  He can't get M's SAT alarm to stop going off.  It's not the alarm malfunctioning.  She can't keep her SATs up, so I crank her O2 up again.  Maxing her out on our at-home machine at 5 L.  And I still can't get her to stay above 88%.  Someone has GOT to be kidding.  So, after a phone call to the nurses' line, paging the on-call pedi, and reassessing every 10 minutes, I get to haul her back to the ER.

I must say, a bright spot in this shit-hole was ER Doc Jensen.  We'd seen him before, and I'm pretty sure he has his act together.  After listening to the story, he says that he's going to order labs, x-rays, etc, but that she will also be admitted.  Thank the Lord.  I told him that was exactly what I was hoping for.  This way I didn't have to pitch a fit to get it.  I just knew she needed to be on IV antibiotics.  He chuckled, aying he'd save me from having to pitch the fit.  I think he was smart and choosing to save himself. 

Highlights:  Admitted to 4, my favorite (not).  Needing 6+ L to maintain SATs.  Everyone thinks I'm a nut job since she looks fine, but we can only get her to 5 L at home.  Whatever.  Lots of tests run.  X-ray ok.  Labs are still in progress.  On lots of meds.  Residents are idiots (charts are there so I don't have to repeat M's life history YET AGAIN, so read the damn thing.  This is not story-time in kindergarten).  Since they are idiots, I let them panic over M's yellow/orange mouth (thanks sweet potatoes).  Morons.  

FF to Sunday.  M's doing better, despite an RT rubbing elbows with the residents.  Looks to be discharged Monday or Tuesday.  I'm fighting for Tuesday so we don't have to go through the "oops, we sent her home too early" thing again.  And now J climbs out of his pack and play, falling onto the floor screaming.  Just in time for his MRI and tubes on Tuesday.

So to steal a phrase from my most-awesome sister, I'm going to stop asking "what next?" because I think God it taking it as a challenge.

Damn fucking shit

Really? REALLY? I mean, really?

M is sick.  Again.  I'm hoping we caught it in time, but now I'm not so sure.  We don't know exactly what we are dealing with yet, but it's looking like either staph or strep based on prelim results.  Geee, fun!  If you can't feel that sarcasm from here, you really need to get a clue.

Yeah, she's still been needing a bit of oxygen all day lately, but last night, wow.  Her norm is up to 3/4 L.  Right now, as I watch her while I'm typing this, she's needing 2 1/2 L.  And it's not the monitor.  Shit.

Accepting all donations in chocolate please.

Upcoming

The latest big news - Jaime's in for ear tube surgery and an MRI on the 29th.  He's been dealing with lots of fluid in his ears the past few months.  ENT wanted to see if they would drain on their own since spring is a common time for that, but no such luck.  He's made such progress with his language, and she doesn't want it to start affecting his balance long-term, so she said let's do 'em again. 

I was all for it.  The past few weeks, mornings have been hell for the boy.  It's almost like he's gotten over-stimulated, hitting things, beating on his head, etc.  It's been awful to see him like that.  I asked if the fluid build-up could be causing this behavior (he's often going after the sides of his head, just above his ears).  Absolutely.  Whew.  Call me evil for being happy about that, but I am.  At least there is a reason for it, and it's not a seizure reason.

So we had ENT call Neuro and get the MRI at the same time.  Neuro wasn't going to put him under for just an MRI, but he was willing to piggy-back on another procedure if something else was coming up.  So there ya have it.  Tuesday, June 29.  Check in at 6, scheduled for 730.

Stay awake or stay away.

Is it really so much to ask for a person to stay awake while taking care of small children?  Really?  Of course, it doesn't matter if M is sleeping in her crib or on the floor and someone else is there.  But PUT HER DOWN if you are that tired!  My girl is too precious to risk your behavior.  And this isn't the first time. 

Over the past several weeks I've seen this person nod off while holding M many times.  She has been confronted, but the excuse of "I can't sleep at night" isn't cutting it with me. Last night, I'd had it.  M was on her lap, and she was so far out that her own head flopped back, smacking into the banister.  The response?  A giggle.  I grabbed M quickly.  Thankfully, M was oblivious to the whole thing and didn't get hurt.

I'm to the point of saying if you can't stay awake, then don't come over.  I am tired of the excuses.  I'll find other ways to deal. 

I'm just tired of people being irresponsible, especially when my kids lives and health are at stake.

Don't preach to me

As I was leaving for work this morning, I noticed that we had "THAT" nurse pulling in.  Oh joy.  Needless to say, I was not happy.  Now, you make think that she's no good with M, but that's not the case.  She does fine at the specifics of her job.  It's her mouth that needs some work.  Or maybe her filter.

She only comes out every once in a great while (thank God!).  But last time she was there, she tried pouring on the religious crap.  Don't get me wrong, I believe in God and know well of His mercy and grace.  I also know that I pay for my wrongdoing.  Because it is my fault. 

We were talking about how life is not easy with two special needs kids.  It isn't.  I'm not complaining because I adore my children just the way they are.  I am lucky and blessed to be their mom.  But having a 3-year old who could see or feed himself, or a 14 month old who could walk and breathe on her own, would make things easier.  But we deal the best we can.  She started spouting off about how God is like a gold/silversmith.  Huh?  I missed that parable in church.  She went on with how like a goldsmith hold the gold to the fire until it is pure, so God hold us to the fire until we are pure.  Until He can see his reflection is us.  All fine and dandy, until you think about how my KIDS are paying the price.  Really?  How DARE you insinuate that my kids' issues are because I am not "holy" or Godly enough!  Are you kidding me?  You have to be, because no one with 1/2 a brain would ever say such a thing to me, much less in my own house.  And the more I think about her saying this to me, the more offensive I find it.

So please, if you think of trying to justify the trials we are working through, please think twice before opening your yap.

Trying to smile

I am so glad May is almost done.  Not only am I ready to get rid of the rugrats at work, but as you know if you've been reading, this has been one hell of a month.  I am not sorry to see it go.

We got initial results on J's EEG.  No seizure activity recorded, but there was a "slowing" along the way.  Of course, we were told, that can be seen when patients are very tired.  Ummm, didn't you tell me to sleep-deprive him so he'd be tired through the test?  Geniuses, I tell you.  We see neuro later this week.  Trying not to get my hopes up, but I really hope he has something to tell us.

So basically, no answers yet. Do y'all know how SICK AND TIRED I am of no answers? Yes, no seizures is good, but then why did he have one? If we have answers, then we can work towards fixing, or at least dealing with the problem.  Metaphor:  your car breaks down in the middle of the highway.  Do you just randomly start replacing the oil, brakes, filter, transmission, starter?  NO!  You have someone figure out the problem.  Only then does your car start working better. 

But I'm trying to be positive at the same time.

M is doing quite well now.  **whispering** No throwing up since surgery!  We still are watching her O2 needs and SATs closely, but the docs are very pleased.  At least the docs I listen to are.  I don't care what the idiots who don't know her think.  She's really sleepy during the day, but then again, she's not much of an afternoon napper.  She gets her sleep in bigger chunks.  And boy, does she like to play.  She and J had a kicking contest a few days ago.  Jaime would kick, and I'd get all excited.  So Maryn would start in.  Back and forth.  So cute.  And so nice to have them back together.

J is still working on his vocabulary.  He could care less about walking right now, unless it's going to take him "oufide"  so he can play in the "gaff."  Just don't put his feet in the "gaff."  He's started to say his name.  "Damu" while patting his chest.  And two days ago, out of the blue, he came out with "awefum."  I'm trying to get him to put "damu" and "awefum" together.  :)  'Cause it's true!

Justice

When I first was hospitalized with M, before she was born, I obviously was distraught, confused, anxious, etc.  I didn't know what to do or how to get through this mess.  I was lucky enough to reconnect with a Jr. High friend of mine who had recently found herself in a similar predicament.  Ok, so we had a major falling-out, but we were young and dumb.  As adults in awful circumstances, we came back together. 

Tiffany's water broke with Justice around 22 weeks.  I was fully dialated with M at 22 weeks.  She was put on bedrest, trying to stave off contractions.  I was put on bedrest trying to stave off everything.  She lived in her hospital room.  I didn't move from mine (with the tornado being my one exception).  Her miracle was born very early - at 27 weeks in September 2008.  My miracle was born early - at 24 weeks in March 2009.

I leaned on her through my ordeal.  How did she survive the bedrest?  How did she deal with the constant fear?  How do you not drive yourself completely insane with "what ifs?"  Where do you turn when no one around you really knows what you are going through?  She gave me hope.  I'd look at pictures of her sweet boy and smile.  He gave me hope.  This is what this fight was all about.  Tiffany fought for and with her Justice.  I was fighting for and with my Maryn.

Justice came home the day before Christmas 2008 on oxygen, but not much other help.  What a gorgeous boy.  And I know his sisters were doting all over him.  But May 2010, a cold sent him back to the hospital.  It was actually the same weekend we were in the hossy after Maryn's latest surgeries.  He was having a hard time breathing.  Damn this BPD/chronic lung disease.  Justice progressively got worse and was transferred to a different hospital. 

All along, I thought he'd pull through it just like he fought off and won the fight against Swine flu last fall.  But this time, his lungs gave out last week.  Justice died in his Mommy's arms.  I have never been so devastated for someone else in my life.  It all happened too fast. 

Well-meaning people often say "I can only imagine what you are going through."  Most of the time, no, they can't.  But I can.  This is all-too real to me.  One serious illness with M, especially for the next several years, and we could be in the same boat.  In fact, she was dealing with lung disease at the same time.  The fear is crippling.  My baby girl fought this bout off.  But what about the next?  Justice and Tiffany were my "goal."  See, things really can be ok.  So while I'm grieving for the family that lost their precious boy, I'm also grieving for that one shining star in our preemie life that has now left us.

Justice, the world isn't as bright and cheery without you.  While we never met on earth, you have changed my life and the lives of so many.

Someone find me that hope and light again.  Fast, please.

Family affair

So, yeah.  Maryn seems to like the hossy.  I tell ya - the kid wants to be there because the toys must be better or something!  Sheesh!  Gonna have to take her to Babies R Us for a shop-a-thon to keep her out.

Then, of course, Jaime wants in on the whole gig.  Friday night, while I'm with Maryn and talking to her awesome home nurse Miss Mandi, I get a panicked call from David.  He's at a loss for words.  Jaime was crawling towards him, then he flopped on to his side and because shaking.  Once it stopped, David called asking what to do.  Since J was still pretty unresponsive, I told him to just call the bus.  Talk about being in shock.  Really?  Did this REALLY just happen?  Seriously?  I was completely numb, bewildered, lost, confused, angry, etc.  I'm sure you English experts can give me the appropriate adjective for this, but my dictionary skills have left the building.

God bless Mandi who said she'd stay with M while I ran downstairs to meet up with David and J in the ER.  J was just crying.  When he saw me, he held out his arms and cried "mama!"  I was the only one who could make him feel better at that time I guess.  We just cuddled, rocked, and cried for a long time.  They kept checking on J, and sometimes he was coming out of it, sometimes you wouldn't get a bit of response.  Even when we tried tickling him.  Docs ended up doing a number of tests.  Labs, ECG and CT were all normal. 

While we were waiting for those results, J did start to come around for longer periods of time.  He would bounce a little bit and give me kisses.  So he was somewhat aware of his surroundings.  Since the tests were all "normal," they sent him home. 

We were supposed to get an EEG and appointment with the neuro on Monday, but of course that's worse than pulling teeth without novocaine.  Oh, let's just wait over 2 weeks for the EEG, and neuro will see him a week after that.  Um, are you fucking nuts?  Enter mom and dad threatening to throw a hissy.  We ended up getting the EEG moved to this Thursday (tomorrow) thanks to a cancellation, and neuro is on Tuesday.  So up in the air all over again.

We're BAAAACK.

So, readmitted on the 14th.  I'm still bitter about it.  She never should have gone home.  Stupid docs. 

We ended up down in the PICU after only a few hours because she was needing 100% oxygen.  Um, NOT good.  And they needed a better nurse-to-patient ratio with being that needy.  So off we went.  Friggin' pulmo that discharged her wanted a new size trach.  God bless the Nurse Kim and RT Brooke who dealt with me, because I was having nothing to do with it.  I said that we were just told that her size was fine.  I was not going to change anything based on his recommendations.  Really, you think I'm going to trust you after such a screw-up that soon after?  Do I look that gullible?  After conferring with the awesome pulmo Doc Nelson and on of our ENTs and their recommendation to up-size, I agreed.

We did make it up to step-down care in a few days.  Her O2 needs were still all over the place, but at least it wasn't as high as it was.  Small pleasures - it is nice to have a bathroom actually in the room.

But of course, we can't just have all good news.  We started noticing M crossing her eyes more.  Optho says things are stable from his point of view.  No pun intended.  Neuro-optho wants a CT.  Duh!  That's what I told them.  But of course, mom knows nothing.  Then he gets sick, so he has to postpone his visit.  When he did make it in, he found a weakness in the outer right eye.  So we are patching her left eye for 2-hours a day.  She hates it, but at least I know it isn't hurting her.  Just annoying her.

And her trach culture started growing crap.  Clebciela.  Common for trach patients, but still a pain.  IV antibiotics.  But don't google it or anything.  I'm sure I spelled it wrong.  So my misspelling will probably give you something like a degenerative joint disease or something.

And we are still there.  And I'm still annoyed.  Nurses keep messing with her O2 sat parameters, so who knows.  Thanks to that, we don't know if she's doing better or not.  Idiots.

Have I mentioned how patient I am?

Back home

Not as much fun as I'd hoped.  I was so incredibly glad to have her back home, but the worries started piling up quickly.

We got home around 6, and by 1130 that night, she was running a fever of 99.5.  Ok, so that's not REALLY considered a fever, but it's high for her.  M's norm is about 97.5-98.  By 130am, she was up to 101.5.  Crap.  Well, I think I was using more colorful language, but I am trying to cut back on that.  And her O2 needs were up again.  AND we didn't have any Tylenol.  Frickin' recall.  Sponge baths kept her stable throughout the night, then I ran to the grocery store for generic tylenol before work.  During the day, David took her to her eye appointment (all was ok.  recheck in a year.) then off to the pedi.  Chest x-ray and bloodwork ordered.  Still gunky, still suggesting viral.  Pedi wanted CPT (chest percussion therapy) at home with nebulizers.  Would have been nice if someone showed me how to used these things once they were delivered at home.  Thankfully the nurses knew what they were doing and were able to take care of it.  Of course, she was needing 4-5 litres that night too.

Next two days, she was stable, per se.  Still needing more O2 than I'd like, but not needing more and more.  Then we get to Thursday night.  I had talked with the pulmo that I liked that afternoon, and he wanted an aspirate.  Aka testing the gunk out of her trach to make sure they knew what they were dealing with.  I was hopeful because the nurse we had that night was really experienced with respiratory stuff.  I knew things weren't good when she had to wake me at 1245.  She had M up to 5L, and her SATs were still dipping into the 80s for long periods of time.  Time to call pulmo again.  He said everything we could do at home, we were doing.  Time to head back in.  So at 130 Friday AM, M, the nurse and I were on our way back to CHS. 

And I was pissed.  Why the he!! did they send her home like this in the first place?  She never should have been discharged until she was back to her baseline.  THIS is why I had questioned things before we left.

Post-op

The day of the surgery went well.  M looked really comfortable.  She "needed" to be held once we got into her room, or so the nurse said.  Mommy sucked it up and follwed orders.  :-p

They kept her on morphine for the rest of the day.  Of course, I wanted a Mommy dose.  But I had to get home to J, and Daddy stayed with M.

Day1 post-op:  I talked to my dad before I headed up to see Baby Girl.  Papa said she was doing well.  She had a bunch of visitors - Auntie Amy, Auntie Emily, etc.  It's nice to see that she's so loved by so many.  But when I got to the hospital, I was less than happy.  My girl was swollen.  Seriously.  I don't seriously panic often any more, but I was pacing, waiting for the nurse to get ahold of surgery.  Her right eye was nearly swollen shut.  Once the surgery resident came up, he was a bit surprised.  Her incisions all looked fine, but there was a ton of excess fluid.  He checked her eye to make sure it was still "working."  He immediately cut off all IV fluids (she had started taking food by her button) and suggested we keep her off that right side.  I asked how long until we started looking at increasing her diuretic, but he said "let's try this first."  Ok, I understand.  Thankfully, just a few hours later, the swelling was noticeably improved.  Whew!

Day 2 post-op:  They were talking about sending us home.  Um, NO.  Like I feel comfortable with this g-button that NO ONE has showed me how to take care of yet.

Day 3 post-op:  She needed more oxygen overnight.  Like up to 2 1/2 litres compared to her normal 0-3/4 litre.  AKA, mom freaks a bit.  While Surg was going to discharge her, I asked for a lung doc consult.  In walks pulmo #3.  Yeah, her lungs are a bit gunky.  Let's get a chest x-ray and some blood work.  Keep her until tomorrow.  At least she's uncontrollably happy.

Day 4 post-op:  Pulmo #4 comes in to discharge.

Detailed report

Ok, so it's MUCH later.  But I tell ya, the past 10 days have been a mess.  I'll take you through the surgery then post separately for updates since.

I did go to work that morning.  Figured it would give me something to do besides freak out.  Well, not so much.  I get a call saying they wanted to move up her time from 11 to 10.  :(  I wouldn't make it there before 10, but I didn't want her to have to go without food for that extra hour.  So I gave a thumbs up.  And then my thumbs started to shake.  I got there just after they took her back.  So far, so good.  Now get me a latte.  God bless my hubby.

1) Reservoir removal went quite well.  The nurse came out to tell us that she was asleep and that the docs were just getting started.  I kid you not.  Less than 10 minutes later, Neurosurg was out saying he was done.  I was nervous since it wasn't our regular guy, but man, this one seemed to do great anyway.

2) Lower bronch was iffy.  Pulmo couldn't get a 2.8 flex scope in past her vocal cords.  Bad.  So he went through the trach to take a look.  Lower stuff looked pretty good.  I think it was the right side that he said was a little floppy, but nothing that overly concerned him at this point.  Odds are, it would stiffen up as she got bigger.

3)  Upper bronch sucked.  Her airway has basically stayed exactly the same.  Still pretty severe subglottic stenosis (aka narrowing of her airway just below her vocal cords).  ENT was able to dilate it a bit forcibly, so we shall see.  She'll need a repeat bronch later this year to check.  Two big things they will be looking for.  A) did the dilation take and B) does controlling her reflux reduce swelling?  If her airway is still too small, we are looking at another dilation September-ish then another bronch next spring/early summer.  If things haven't improved by then, major surgery.  As I like to put it, they would have to go in and "crack the straw."  Split the airway length-wise and prop it open with a piece of cartilage from a rib.  Sounds like fun to me too!  In the meantime, she is entirely trach dependent.  It is a life-saving piece of equipment for her.  She could not live without it.  Gee, I just love hearing that.  Oh, and because her airway is so narrow, they don't want to try the passy-muir valve yet.  That's the thingy that would allow her to try to vocalize.  Well, at least he DID say both of her vocal cords were moving!  It was possible that one or both would have been permanently paralyzed by her heart surgery when she was a week old.  So take that you bad news bearer!

Honestly, I don't see progress being made.  Her airway hasn't improved since she was trached, so I don't anticipate much an improvement down the road.  Some may say I'm being a pessimist.  I say I'm just trying to be realistic and prepare myself.

4)  G-button/fundo went really well.  We were prepared for that part alone to take up to 4 hours.  M was out of surgery and into recovery from everything at about 3 1/2 hours.  Pedi surg did not have to open her up completely.  Whew!  Huge sigh of relief there. 

Now I just had to wait to see her.  She took her own good-natured time in recovery, so I went to the gift shop and bought her a Hello Kitty key chain.  I thought she might like to play with it hanging down from her playmat.  Tick tock.  Tick.  Tock.

Made it

She's through the surgery.  Did really well.  We're both tired.  Will give detailed report later....

S-day

T-minus 3 hours and counting.  BLAAAAAHHHHHH!

March on

Last weekend was our local March for Babies. I had never been a part of it before, so I am now sure that everyone could tell I was a total rookie.

We had done a bunch of fundraising online, coming close to my team goal of $1000. Not bad in my opinion! My team rocks. My parents and Nicki took over for David since his STUPID work wouldn't let him off. Carrie, Dan and Lucy (looking as cute as ever) were there. And a special friend Melissa from work. I can't explain to her how much that ment to me. So Sunday was just about walking for the babies.

I was worried I wouldn't know how to get to Mahoney. After living in NE for over 15 years, I had never been there. The long line of cars stopped on the interstate lead me to the right spot. Holy crap that's a lot of people! It was heartwarming to see that so many people took the time to do something for the babies. I never imagined it being that big.  News reports later said that over 4000 people were there!

After the panic of "what to do? Where to go?" we ran in to a few friends. Auntie Mandi and her family for one. 

Then we were off.  Ok, I was off like a snail.  Dang!  I hadn't done walking like that in years!  So much so that I, and the majority of my team, took the shortcut.  Well, the shortcut was a killer hill, but it was shorter.  And we made it to the finish line. 

If the weather was better, we would have made a day out of it.  They had firetrucks, trains, music, etc.  Just awesome.  But I still can't get over the awesomeness that was all of these people caring about the babies.

Luck, Love and Superpowers - we march for ALL the babies.  One of the reasons I march.

Puh - lease!!!

Ok, so we have M's stuff scheduled for May 6.  Lots of work.  So guess what?  I'M GETTING SICK!  No, not that me getting sick is all that big of a deal, after all, it's just a spring cold.  But SHE can't get it.  I'm frustrated enough that we have to wait until May 6.  Just the thought of having to cancel, then trying to recoordinate 4 different docs with the ER is just making me nauseated.  She started to go a bit yellow over the weekend, but nothing major.  Please, please, PLEASE - if she has to get it, get it now so she has time to get over it.

Mid April

Ok, so after starting with Maryn's birth story, I've taken a bit of a break.  While it was cathartic, it was also incredibly difficult.  I tell you, at 7:30 on March 31, I bawled like a baby.  No pun intended.  I just don't know if I can finish up the rest of her "birth" story right now.  I will some day.  I promise

On to real time.

Jaime is still as sweet as sugar.  I walked in yesterday and just bent over near him.  As soon as he saw me, he reached up and repeated "MAMA" until I picked him up.  What did I do to deserve such a sweetheart?

He's being creative.  Lots of new words and games.  Did you know that a squirrel does, in fact, make a specific sound?  I sure didn't.  But just ask J, and he'll tell you what a squirrel says!  It's some sort of weird "coo" sound, but it comes from the back of his throat.  And he just invented his new "up high" game.  I can't keep up.

Maryn is being a mini-me.  Total drama and attitude.  Two days ago, she pulls out, not only her NG, but also her trach!  Little sh!t!  She's lucky I wasn't there this time.  So of course, I'm now wondering if this is the start of something regular.  Oh joy.  God help what's left of my hair if this DOES become a habit.  Of course as I'm "chatting" with her about it, I just get this completely innocent "but I'm cute and you love me Mommy" look.  How am I supposed to compete with that?  Really?  Oh, who am I kidding?  She, and her brother, have me wrapped around those little fingers so tight I don't stand a chance.

The Princess has also cut her first tooth.  I noticed on Sunday (April 11).  She had been chomping on her fingers a whole lot recently, but she finally let me try and feel around in there Sunday.  The bottom left one hasn't just poked through, almost the entire top surface is through.  And the upper left is getting close too.  Only a little late considering she should be 9 months old today. 

We've been trying to get her to eat a little bit of baby food.  Started with squash.  Negative.  Peaches?  Nope.  Sweet potatoes?  Would you believe I think she likes them?  Just like Big Brother!  The past 2 nights she's taken about 1-2 tsps without a huge fight.

Surgery is scheduled.  Thursday, May 6.  And it's a full-plate.  Come to find out that it won't just be a g-button, fundo and upper bronch with possible dialation.  Pulmonolgy also wants a lower bronch, and neurosurg is going to take out the reservoir (pre-shunt thingy).  Fun I tell you!

In the meantime 3/31-4/1

I was unconscious, but I heard this part of the story from friends and family after the fact.

My mom went to the NICU with the baby.  Our priest was unreachable, but my mother-in-law did reach the pastor that had married us.  As he was preparing to baptize her, my mom made an executive decision (that I agree with 100%).  She was to be named Maryn Elizabeth.  It's what I always wanted to name her, but I was afraid of using it if I was going to lose her.  Then I would have named her Angelique.  But she really was always my Maryn.  And my sister Carrie and her husband Dan were to be godparents.  The pictures are quite stunning.  As she was being blessed, she looked so peaceful.  But I know she was fighting something fierce. 

She gave the docs and nurses a run for their money that night.  But as I said, she was a fighter.  First, the fact that she even HAD apgar scores was a miracle.  She was trying to kick.  Of course, as the battle ensued, she began to weaken, so there were lots of interventions.  Ventilator, dopamine, art line, bili lights, nitric, etc. 

I was another catch.  I ended up seizing, going unconscious, and some stories even say I unofficially coded, deciding to breath just as they were ready to "push the button."  I was hemmorhaging like no other and transported to the ICU.  Great, BOTH of us in the ICU. 

I needed 8 out of the 9 units of blood in my body replace, plus additional blood products.  I have no idea how much of which products I got.  I do know I gained 20 pounds overnight.  I woke long enough overnight to tell the docs to just do the 2nd IV in my foot.  They had tried at least 4 spots on my left arm (I already had an IV in my right), and they were desperate.  Everything was collapsing.  "It might hurt more than usual" they said.  Whatever, you've poked me how many times with how many bruises, and you're worried about a needle in the ankle?  I didn't care.  "I wax my legs - this can't be any worse" I told them.  Gotta hang on to humor when you are trying not to die.

Turns out, e.coli had snuck in between my uterus and the bag of waters when all this started.  The antibiotics kept it in check at first, but it fought back with a vengeance once I was off them.  It entered my blood stream, leading to sepsis, septic shock and then finally DIC.  Don't ask me what the acronym literally stands for.  But in essence, my blood lost all clotting factors.  If you watched Private Practice, the one where they try to save Violet after the crazy lady steals her baby, well, that was basically me.  Minus the nutso.

OYA 3/31

D-day.

We went on with the day as usual.  Sleeping in.  Eating.  Chatting with Gloria.  Etc.  That evening, my friend Kelly was nice enough to stop by to say hi.  She was telling me about her daughter Skylar's birthday party a few days earlier.  Sky is the smartest now-five-year-old I've ever met.  What a sweetheart.

During our visit, I had to use the bathroom.  About 7:30 pm.  LOTS of blood.  I mentioned it to Kelly, and understanding, she left as I called the nurse.  Guess who?  Nurse Alexa was back on.  Again, I could tell she was concerned.  It looked similar to the bleeding I had when I was admitted.  She called the resident.  About 10 minutes after calling for the nurse, I started vomitting.  And I was spiking a fever.  I tell you, that was horrifying.  Here I was, vomitting uncontrollable, knowing that with every retch, I was putting pressure on the cerclage that was my baby's only chance.  And of course trying NOT TO made things even worse.

They tried to get my anti-contraction meds down.  That lasted about 2 minutes.  My fever was now approaching 103*.  Something wasn't right.  At first, I wondered if I ate something iffy, but that wouldn't have such a fever effect that quickly. 

By 8:00, the verdict was in.  Alexa came in and said, "we are having a baby tonight."  The docs had decided that was our only chance since we didn't know what was going on.  Someone might as well have just collapsed both of my lungs.  Despite all the physical pain I was currently in, THAT was the news that literally took my breath away.  I couldn't breathe as the panic set in.  I begged them.  No, please.  Not now.  It's still too early.

I agreed to the surgery while begging for my husband, my mom and our priest.  I knew what lie ahead.  I just knew I was never going to be able to hold my baby girl.  Alexa and some other nurses came in with the paperwork and to do all the pre-op stuff.  I was pleading with Alexa - if this was going to happen, would she please be there.  Don't leave me.  If I had been well enough to open my eyes, I am sure the room would have been spinning.  My mom made it back to the hospital just before I was rolled to the OR.  I asked her to watch over Punkin.

I don't remember getting to the OR.  I guess I was in and out of consciousness by this time.  In the OR, things went quickly.  Spinal went in fairly easily.  And the c-section was underway.  Despite the sheer terror (and fever) that was causing me to shake uncontrollably, seeing Doc K made me believe that this WAS the right thing.  And Doc H, who admitted me, was assisting.  They would do everything they could.  And the nasty Neo Doc K was already there.  That made me feel better.  While last time, he was telling me my baby had no chance at that point, now he was there and was going to try and save her.  I saw a bunch of other people in the room, but I had no idea who they were.

About 9:10, yes less than 2 hours after the ordeal started, I asked David to let me know when she was born.  He told me she had been out for about 10 minutes.  I didn't even know my baby girl was officially here.  Or if she was alive.  She was born at 8:59 PM, weighing 1 pound 12 ounces (790 grams), measuring 12 1/2 inches long.  And yes, she was alive.  For the moment.  The neo group had gotten the breathing tube in and were now going to transport her down to 5th floor (I was still on 9) to Children's NICU.  I got a quick glimpse.  She WAS alive!  Lying on her right side, she had one eye open.  It wasn't much, but she was fighting.  Right from the start.

Now my moment of weakness for which I will never forgive myself.  I asked David to stay with me and let my mom go with the baby.  How could a mother do that?  I always said that he was to be with our children!  Now here I was being entirely selfish.  I was the reason she was having to fight so early, and now I was leaving her alone. 

They closed me up and took out the cerclage.  Somehow, I got to they recovery room.  Again, in and out.  The palpating of the abdomen was something awful, but it needed to be done.  But once again, my nurse in recovery was REALLY pregnant.  I wanted to hit someone.  Why?  Why would they think this assignment was appropriate?  Doc K was in there a lot.  I didn't know what was going on.  I knew I would bleed even after a c-section, but they kept checking to see how much I was bleeding.  I was getting so tired at this point.  I couldn't fight sleep any longer.

Black.

OYA 3/30

Ultrasound today. 

Oh, please God, let's make that goal weight.  Remember when the docs said they wanted her 1 1/2 pounds to give her a shot?  Well, at that point, she was only 1 pound.  Thus, the high protein diet.  She needed to increase her weight by 50%.  Really?  It took her 5 months to hit 1 lb!  You want her to increase that much now in 2 weeks?  Not possible.  But I gave it my best shot with chicken nuggets (from Wendy's), yogurt, bacon and protein drinks.  Was I even close to successful?

First, a cervix check.  The cerclage was still holding!  I seriously couldn't believe it.  Shock, awe, disbelief, sheer joy.  There were too many emotions to accurately describe them all.  The shot at saving my daughter's life was still working.

Then, the weight check.  I don't know how the docs prioritized this, but it was the most important for me.  If she came right now, do they think she'd have a chance?  YES!!!!!!  They were putting her at 1 lb 10 oz!!!  Two ounces more than my goal!!!  How on earth did this happen?  I didn't care, because whatever it was, it was working.  It made me deal with the lack of appetite a little better.  While I may not feel like eating anything, SHE was getting it.  She was gaining.  She was doing exactly what we needed her to do.  She was fighting.

I asked the docs about the steroids for lung development too.  I was told that research showed that the benefit of them decreased as time went on, so they didn't want to give them too early.  If they gave them to me now and she held out for 2-3 more weeks, they would have gone to waste.  If it looked like delivery was imminent within the next 48-72 hours, then they'd start.  But for now, we were just going to stay in the holding pattern.

OYA 3/29

So in the middle of all this, I met a wonderful lady.  She changed my life.  She kept me from that dark hole that was so attractive.  She kept it real while refusing to focus on the negative.  I looked forward to when she was working, and I kept telling her she needed to be my nurse every day.  Denise became more than just a completely awesome nurse.  I'd like to say she's also my friend.

She "got" me.  She wouldn't wake me up just to check for vitals.  Yup, I was still breathing.  She knew I would let her know if something was up.  She'd come in and chat.  I'd tell her about Jaime, and she'd tell me about her kids, the camping, the horses, her parents and the new puppy.  I got to hear stories of idiot cable men.  We'd talk about chocolate and growing up outside of a thriving metropolis.  We were familiar with the same areas of town, so we'd toss out "you gotta check out this place" hints. 

But don't cross my Denise!  Like I said, she kept it real.  She was never mean, but she told it to you straight.  She could hold her own, even against a cranky, whiny little brat like me.  When I would complain, she'd listen, then help me suck it up and continue fighting.  She'd remind me what I was fighting for, pointing out that the fight, the pain, the inconvenience, the terror, was more than worth it.  She wouldn't push me to deal with it on my own.  Nope, she would walk through it all with me.  The good, the bad, and the ugly that was to come.

She brought a piece of real life to me, making me feel a little less isolated.  Another one of my angels in disguise.  Or in this case, scrubs!