Wednesday, March 31, 2010

No Sleep for Mommy...

Just when I my sniffles cleared up enough that sleep might have been possible....
Seraph's feeding pump stopped working.  I did all the troubleshooting I could.  Called the company.  Called the pharmacy.  They're going to see if they can bring me a replacement tonight. Of course it happened just after midnight....

She was supposed to start eating half an hour ago.  I dunno if I should bolus the feed or wait to see what the pharmacy says when they call me.  I'm just praying she doesn't wake up!

It's nice to have an emergency at home that doesn't require mad dashes to the ER  :)


oh, and my computer is still crashing.  nice.

Update:  The pharmacy will deliver the pump at 7:30am.  I'll be up til 2:15am finishing off her bolus feed.  Then up again at 5am for another bolus feed.  Right about now I'm super happy we switched Seraph's dental examine from tomorrow to next week. Still....kids'll be up by 8:30am and therapist is coming at noon.  It's going to be a long day.

Nut Shells

I had fun with Seraph's physical therapy today.  We mostly played with a hat.  Props are good!  She's getting more brave with her balance every day :)
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  • Thank the heavens that Sexy Haqon is back from his super long business trip that went really well but it was crazy hard to deal with the kids all week without him and thank heavens for family who dropped by and called to keep me sane. (I always feel weird telling people that he's gonna be gone all week cuz it makes me feel more vulnerable when more people know he's not here....but then if I don't tell then I don't get the extra support which I really need. I haven't figured this one out yet)
  • kindergarten orientation.
  • kindergarten forms
  • track sign-up for next year
  • doctor appointments for said forms
  • reschedule seraph's dental appointment
  • Physical Therapy (play with Seraph who has extra big smiles today and call it a chore ;)
  • skip Seraph's food therapy three days in a row
  • figure out if I have a cold or allergies -- either way I can't breath!
  • put up new calendar (yes, I do this 2 months at a time...it's just easier to organize my desk that way)
  • fax those documents to that lady 
  • call that office that'll keep me on hold for an hour
  • buy new rechargeable batteries for my camera (somehow they always end up in the Wii remotes)
  • sign tax papers
  • fill out more papers
  • fix my computer so it won't restart itself at in the middle of webinars I've waited all day to watch.
  • cross my fingers that it's really fixed.
  • play my turn at scrabble
  • stop putting off writing on my blog just cuz I don't have a picture to post with it
  • sleep
  • get Delightful Finch's hair cut!!
  • play text twist
  • learn that my phone's screen turns a funky kind of plaid if I don't recharge it on time
  • learn that my phone's plaid screen will go away if I charge the battery for 10 minutes AND then push the camera button.
  • thank the heavens for google.
  • see what Ms Baby Plan is up to today

Thursday, March 25, 2010

Seraph's Checkup

Seraph at the doctor's office (before her shot)

Dr Pediatrician said this is the best Seraph has ever been.  It was almost like a normal wellness check. She was a bit grumpy, but happy enough once we started singing Dora's "Buzzy Bees" song. She weighs the same as last month.  Her weight is kinda funny like that.

He peeked at her teeth and referred her to a pediatric dentist (who happens to work in the same building - yay!)  I filled out all the appropriate papers and set up the appointment for next week. They said it's common for babies who take lots of medicines to have problems with their teeth's enamel. 

Wednesday, March 24, 2010

Picture: Seraph & Angel (20 months)

Essentials - Ramit

New segment today that I'm really excited about:
Raine's Essentials are things that I couldn't live with out, things I wouldn't have survived the past 2 years without, and things I desperately NEED want!

Pregnant with momo twins, and facing a 7 week hospital inpatient stay, the first thing I remember doing:  setting my finances in order.  I do the finances in our family. Pregnant = forgetful.  I set up everything to be as automated as possible....and then I stumbled across this lovely book:



Before I spent $10 on the book, I'd read posts from Ramit's website. I like his style--boy's got spunk.  He doesn't hold back.  Lifehacker interviews him here. He's been on NPR, morning shows, newspapers, etc.

Best $10 I ever spent.  I'd saved myself $29 in fees by the end of the first week.  Since then I've MADE (tax free) money with a Roth IRA for retirement.  I knew nothing about investing before I grabbed his book.

(He also has a continuing segment called the money diaries that I enjoy.)

OK - and here's the best part  - after reading his book...the 2 times when I found myself with financial questions that weren't already answered, I emailed him.  Both times, he responded within 10 minutes (even though it was after midnight!) and we chatted until my questions were resolved.  Now I'm not saying it's gonna be that way for everyone...but I found it pretty amazing! (I wonder if he's figured out how to get around the whole need-sleep issue.)

Anyway, go check out his website and his book.  You'll be glad you did. 
(No paid promotions were involved in this post--just my unsolicited opinion.)

Tuesday, March 23, 2010

Today's To Do ....

  • Call old health insurance to fix problem (x 2)
  • Call new health insurance to fix problem
  • Call each of Seraph's providers to make sure they accept new insurance
  • Try to convince new insurance (again) that their phone system is totally messed up.
  • Change diapers...more diapers...and more diapers
  • Watch Castle
  • Cleaning storm
  • Watch one (make that two) Inuyasha Cartoons
  • Eat Chocolate
  • have all 3 meals on time
  • Shovel the snow off the sidewalks
  • Tell the neighbors their sprinklers are watering the snow
  • Invite cousin S to come over
  • Go to Bed
  • Watch in horror as Angel learns she's tall enough to open doors now
  • Get all the kids in bed 
  • Talk to my honey :)
  • Make a cartoon of myself
  • Call my mommy
  • scrabble turn (x2)
  • Watch in delight as Seraph stands for 7 seconds all by herself!
  • trick the kids into eating vegetables
  • Play text twist
  • help the kids make a movie for their cousins
  • exercise

Friday, March 19, 2010

Being your Child's Best Advocate

(Cry warning!!)
Friday’s Featured CauseThis post was sparked by 3 Boys + 1 Hubby's Friday's Featured Cause: Jack of Hearts. It's a sad story, but brings up some important points. You are your child's best advocate. How do you know when it's time to get a second opinion or a new doctor?

I don't always agree with Seraph's doctors.  I read as much as I can about similar heart conditions. (I stop when I'm crying too hard.  There's so much sadness out there!) I ask about everything.  I look at the xrays. I ask how meds work. I trust my gut.  Sometimes we have to agree to wait and see what happens.  But if I ever felt like the doctor was ignoring my concerns, I'd ditch him in a second!! I know many of the other doctors and surgeons now.  I would interview and chose the one that matched our needs best.  I know some people have to change children's hospitals (usually out of state).  I don't see that happening to us.

The day I was diagnosed with monoamniotic/monochorionic (momo) twins, my OB told me NOT to go home and read anything about it on the internet.  Seriously??  He said the internet held lots of mis-information (especially outdated information) on momo twins. He didn't want me to stress.  Ha!

Obviously, I hit the net for info as soon as the kids were tucked into bed.  There was some outdated info.  There was also a completely FANTASTIC support group.  The group took me in, told me what to expect, and (most importantly) provided me with the Heyborne Study. I used this study to school my doctor and strong-arm my insurance company into a specific path for the best chance of survival for momo twins.

That was my first experience being my child's best advocate.

Then the doctors told us Seraph had a heart defect.  They explained the surgeries she'd require.  They directed us towards an internet support group.

As much as I can stand it, I read stories of other heart babies.  I hope for the best, but if things don't work out, I want to know what to expect and what to avoid. My heart goes out to Jack-of-hearts parents.  His doctor's behavior was horrific!

When Seraph's doctors explain something, I pause and ask myself if I could explain that to my husband.  If I can't, I know I didn't get it.  Then I say, "I'm sorry - I know you just told me this, but it fell out of my head.  Would you tell me again?"  I ask questions.  I take notes.  I repeat it back to them and ask if I got it right. Doctors know I'm in shock.  They are patient with me.

I double check each prescription.  I ask what the abbreviations mean.  I make sure it matches what I expect it to be.

Nurses are great.  Except when they're not.  Some are lazy...or jaded...or had a bad day.  Some don't wash their hands enough.  Some watch too much TV.  Most nurses are OK.  Some nurses are demigods.

Some doctors are.... /sigh.

There have been times when I did NOT agree with Seraph's doctors and cardiologists.  I always ask, "What should I be hoping for?" when they give me bad news.  That way, I know exactly what to pray for.

Once some of her doctors disagreed on the best treatment.  The doctor *without* the final say, mentioned to me later that Seraph's main doctor had said something like "why bother fixing it, she'll just get worse again".  We chose to fix the problem.  I'm annoyed because I KNOW her doctor would NEVER say that where I could hear it. I felt manipulated.

It's a big mess.  The doctors do what they really think is right.  BUT...they've seen it go wrong before.  They're the first to get blamed if expectations weren't realistic.  And sometimes, they're lazy or negligent or just plain wrong.

Know your baby, know her problems, warning signs, treatments, ask questions, read as much as you can, find out what problems other people had.

Seraph came home on palliative care last year.  The doctors told us she was going to die.  She did not.  She thrived at home - a loving environment with ONE continual care provider.

Sometimes Mom knows best.  Trust your gut.  Keep the doctor (and yourself) in the loop.

Wishing you and yours good health and happiness

--Raine

Wednesday, March 17, 2010

Remember the Tooth!

Seraph might have a cavity!

I keep switching back and forth between thinking it's a cavity and thinking it's some paint she chewed off a toy.  (Ya, I know that's bad, too.  Those painted toy trains are supposed to be out of her reach.)  I hadn't thought much of brushing her teeth since she doesn't eat orally and has HUGE oral aversions.  Her aversions stem from being repeatedly intubated when she was smaller.  I guess not brushing was a mistake--worse because my brother is actually a dentist! (....but not a pediatric dentist.)

So, if you have a heart baby, remember to brush his teeth!

If it does turn out to be a cavity, we'd have to take her to a pediatric dentist.  They'll sedate her then take care of the cavity.  Taking care of it while she's awake is NOT an option because of her aversions.  Her heart rate would shoot thru the roof!

Also....anytime a heart baby has dental care, they take antibiotics first.  Otherwise they're susceptible to a specific bacteria that will damage the heart.

That said.....the dark spot seems to be getting smaller.  So, I'm hopeful that it's just a spec of something that I haven't been able to brush out.  Yes, I'm brushing her teeth now.  No, she doesn't love it. Yes, I'm doing it anyway.  No, I don't know how this will affect her aversions.

Wednesday, March 10, 2010

Summertime for Seraph!!

Seraph visited her cardiologist this week.  He was optimistic.  (He is NEVER optimistic).

I think Seraph is entering a summer vacation period of her life.  If we can keep her from getting sick, she won't need to go to the hospital for a whole year!!  She needs to gain atleast 10 more lbs before they'll think about doing her third open heart surgery.  (She's 22 lbs and 20 months old now)  She's soooo close to walking on her own.  Soon we'll be chasing her all around the house.  She's even trying to figure out how to go up the stairs.  Still not much progress on overcoming her oral aversions long enough to eat.

Dr. Cardiology wants to see her again in 6 months.  He wants us to keep the blowby oxygen on her.  He wants to know if she gets sick - especially if it's something that will change her fluid intake/outtake balance like the flu.  Flu very, very bad.

We're still being careful for RSV/flu season.  Sexy Haqon and I are excited for this Summer.  Seraph will be able to walk!  Her twin cousins will be coming to visit!  We'll be able to take all the kids out to places like the zoo!  Haqon *might* even be able to convince me to take everyone on a family trip.

We've plans to live it up and party this Summer.....and I gotta say I am sooooooooooooooooo looking forward to it.


So, if you come to visit, don't bring a cold/sickness.  I wanna keep my baby home this year :)  Maybe I'll make one of those signs:  95 days with no ICU!!

Monday, March 8, 2010

Love my Family

Seraph has a little heart-baby friend who was in the hospital last week due to sickness.  (She's home now, yay!)

RSV/flu season is sooo hard.  I don't want my baby to catch anything but....  But it's so nice outside lately.  Surely RSV season is just about over, right?  Surely one little trip to XXXXXX wouldn't hurt.  Except.  Except that last week the news reported that the local children's hospital was getting 200 RSV cases PER DAY.

OK, so lock the door and don't let anyone in.  Start yelling at people to wash their hands.   Put up signs on your front door asking for a $250k donation from anyone who brings us a cold (ya know, to cover the ICU bill. No, I don't really do that...but yes, I did entertain the thought....)  Except.  Except winter is lonely and gets depressing when you're stuck inside...even when it's stuck inside with your wonderful family.

So, today we invited the cousins over to play cards.  My kids ADORE their cousins.  We all do :)

Amazing fun.  The best part is that they already know how freaked out I am about germs around Seraph.  They just don't come when they're sick or when they've just been sick or if they might be starting to get sick.  They sanitize before being told because that's just what you do at my house.

I'm so grateful for people who just get it.  Thanks cousins!  Thanks family.  Thanks to Gma and Gpa who meet tons of people all the time....but take care to not get sick. (sometimes with sanitizer and other times by fierce willpower.) Thanks friends.  Thanks to friends who tell me 'hey, we put that hand sanitizer by our front door because we have to be careful for you'.  Thanks neighbors.  Thanks to neighbors who keep their kids away from my kids when they're sick.  Neighbors who are careful about washing up before they come to play.

Without you guys my winter would be soooo lonely and depressing.  The kids would drive everyone crazy.  But, thanks to you....everything is better.  Winter is almost over.  RSV season drags on too long.  Thanks for making a difficult time better.

and yes, wash your hands!!

Wednesday, March 3, 2010

Potato Casserole


Dinner was a hit last night.  Here's what I made:

6 Potatoes
1 can Cream of Mushroom
2 C Milk
1 can Peas
1/4 cup shredded cheese
1/4 small onion, chopped
Salt & Pepper to taste
Basil

Slice Potatoes. Add onion in microwave safe dish.  Add inch of water.  Cover with saran wrap.  Microwave until most of the potatoes are tender to the fork.  (6-10 minutes)

While that's cooking, mix mushroom soup and milk in a casserole dish. Add potatoes to casserole dish.  Add peas.  Stir.  Sprinkle cheese, basil, salt, pepper on top.  Bake at 350 (uncovered) for 45-60 minutes

You can do asparagus on top, if you want.

My whole family gobbled this up.  No left overs!

Enjoy!

Tuesday, March 2, 2010

Why is it......that everything goes in the mouth *except* food???

The Twins

OK, I just threw that in cuz I couldn't think of a title.  I mean Seraph.  She's so silly that way.  She loves chomping on EVERYTHING now.  But, If I try to sneak her some food, she drops it like it's poison.

Gma gave us these fantastic water-erase markers.  I think they're for drawing on car windows to sell your car.  We use them to draw on the shower door.  Each kid gets a bright color to draw whatever they want (just on the glass).

We used to draw letters in the shower with soap.  So, the kids think of the shower as a place to do letters now.  Strong Bear continues to sound everything out.  He asks about everything!

Today Beautiful Rabbit's school sent her registration forms for next year.  Then it hit me - Strong Bear's first day of school is fast approaching. He's not scared of school at all.  He wants to go be like Rabbit.  She loves school and it's rubbed off on him already.  Besides, school is filled with tons of boys to play with!  (My sweet Bear does get tired of being around all girls all the time.)

I finally cleaned off the master bathroom counters/sinks.  (Don't ask how long it's been...)  Let's just say it was filled with everything we wanted to keep out of reach when the kids were just a bit smaller.  Plus it had formula and supplies for Angel.  She doesn't even drink formula any more.  This was left over from when her crib was still in the master bedroom at night. There was lots of garbage, too--empty bottles and papers.

Delightful Finch met our new neighbor's dog today.  The dog is really loving.  Finch liked petting her once she calmed down a bit.  Then Finch decided it was a good time to run up the stairs to explore the new house.  Doh!  I love the way she just makes herself at home wherever we go.  My other kids aren't like that.  It wasn't the time for a full tour, though.  So, I scooped her up and we went home.

March seems like a good month already :)

Monday, March 1, 2010

My Momma said there'd be days like this....

Wonderful days filled with smiles and joy.  I knew they'd come, but didn't expect them to come so soon.
Seraph at the park

I dread the dreariness of February.  Today the sun came out and warmed everything just enough for a trip to the park.  Don't get me wrong - it was still cold.  The wind never stopped blowing.  But the kids (and especially Seraph) had oooooooh-sooooo-much fun!!

Seraph wanted to walk everywhere!  I'd carry her up to the top of the slide (don't want her learning to do steps yet.  nope nope!)  We'd slide down, clap and "yay" at the bottom, and then walk back to the steps.  She tired after a while, but overall she seemed really happy.

We left all the tubes at home!  She wasn't scheduled to eat for an hour, and I decided she could go without her oxygen for that long.  (She's accidentally gone with out it for several hours before and was OK.)  Besides, oxygen tanks mean nasal cannula instead of blowby and she refuses to allow any tubes on her face unless she's feeling too sick to move.)

The park is fenced in, and we had the whole place to ourselves.  Elmo came with us....and a huge ball to play with.  Sexy Haqon brought his mp3 player (so we could stay longer w/out him getting bored, I think)  They don't even look cold, do they?
Did I mention the wind?  Crazy windy!  Seraph didn't seem to mind (last year the wind touching her skin would scare her.)  My favorite was a slide built for two.  I just had to take the twins down it together.  I don't think they cared that they could go at the same time.  But it sure made mommy happy :)

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