Good evening.  It was a relaxing day today somehow.  I got the nursery cleaned at church.  (By hiring Service Master )  Let them in and headed back home.  Decided that it would be better to go get Mari's stuff for his party tomorrow, so Princess and I ran to the grocery store, and bread store for hot dog fixings. 

After the two of us got home I took a lovely long nap, and when I woke up pretended I didn't have children and read a book.  *grin*  Gotta love a dh who will let me do that sometimes. 

Other then that not much going on.  Kinda floating in limbo land surviving until Rainee's procedure.  Not allowing myself to think too much, 'cause thinking is just scarey. 

A friend who I hadn't chatted with in a long time found me a site with GOOD info about Rainee's latest condition.  If anybody's intrested you can read up.  They also have a picture of the coil thingy thats going into her heart.   This site also has a support list for parents of CHD kids.  So, I've joined and am hoping to glean more. 

I'm so much enjoying Role playing at my new board.  I can't believe that I've gotten into this, and the things I find myself letting my character doing.  Okay, now don't freak.  This isn't D&D role playing, its more like a bunch of different writers writing a story together.  And its totally addicting

Speaking of addicting.  Galain I have something for you...but xanga will NOT let me upload pictures, I've been trying for two days, and I so wanted to give it to you.  I WILL be patient (if I have to)

Nope still not working.  Man I wish I had image hosting elsewhere as well.  Oh well.  Guess I'll continue to be patient  *grin*

have a g'nite all.  Sorry I've been such a lazy blogger, its taking me awhile to conquer things after this latest onslaught of Rainee's stuff.

HMMM tried to upload pictures and xanga doesn't like me.

Today is Jame's birthday.    He's a big 2 years old.  We will be celebrating (with family) on Saturday night.   Today we gave him his b-day presents, and he was wewy happy! 

Mind you had to fend the other kids off the new toys.  Can you tell me WHY we bought James a drum?  Because he looooooooves it.  Boy did we do good.   

Tuesday we took him to the Seattle Zoo.  And he thoroughly enjoyed it.  I have lovely pictures.  BUT alas, I will show them when xanga gets its rear in gear.

Anyhoo.  HAPPY BIRTHDAY JAMES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With all the great inventions in the world.  Why oh why oh why have they not invented a beeper on the remote, like the page on the telephone?  I'd pay BIG bucks for it!  And yes, my remote is lost again.

Good morning YAAAAAAAAAAAWN

I typed out a lovely blog yesterday, but it disappeared into cyberspace, so I guess you'll have to imagine I was in a good mood. 

So here's the mystery of the month.   Do you think that it would be possible for me to get both of my boys to church CLEAN?   Three weeks ago unbeknownst to me Kaylin dumped her blizzard into James' car seat.  And the next day (Sunday)  mommy sat him down in it and he road in quiet to church.  I pull him out of his carseat and wa-la he's COVERED in chocolate icecream.  And mommy doesn't have a change of clothes.  He ran around church the rest of the day in shirt and diaper.  *sigh*

Okay two weeks ago HD was told Get your shoes on and get in the car.  Now beings I'm MARRIED to a man I should know you can only give ONE set of directions at a time, but I temporary memory lapse.  Anyhoo, he got into the car, but forgot the shoes.  I of course trusted that he'd done the job, and didn't check, as I had a few other things I was checking on sniggers.   Soooooo  he got out at church in the middle of January.  BAREFOOT!  And of course I didn't have a spare set of shoes, so he quite enjoyed church BAREFOOT.   I love my son. 

SOOOOOOOO this week, I made quite nice and sure that he had his shoes on, the carseats were reasonably clean.  And we all got into the van and headed to church.  PHEW we're clean.  HAHAHAHAHAHAHAHAHAHAHAHAHA!!!!   Unbeknownst to me HD smuggled in some tempura paints that he got from Christmas and decided to paint on the way to church.  Soooooo he spent the rest of the day covered in pink paint.  (WHY did it have to be pink?????)

So, the mystery continues.  What are the odds of 5 kids going to church clean next week??????

Good morning  

Well so today should go back to normal. BUT what my friend is normal.  I remember having long complicated and fairly hillarious discussions about normal.  And if my weirdness is normal then I'm normal kinda discussions.  Confused thats okay the conversations weren't exactly rational, and ironically enough we were all sober 'cause we were at a Christian college.  snicker

Okay on that note.  I'm struggling with what is normal around here.  We've been desperately trying to achieve normal ever since Rainee was born.  Normal right now seems like an unachievable goal, knowing that Rainee has something wrong with her heart, and waiting to find out when it can be fixed.  So I guess we'll try survival again.  I'm so tired of survival, but I guess it keeps life "intresting".  I'm also kinda tired of intresting. 

I'm moved beyond denial to anger.  This may or may not be good.  I'm not lashing out at my kids or anything, I'm just sooooo frustrated for Rainee.  Can't she have normal?   And I start envisioning her under anesthesia again and I want to scream and cry.  The fact that they tape her little eyes shut to protect them during the procedure etc, etc.  I can only think about it so long before i panic, and try to move on.  But moving on is also a hard one.  Because in order to move on you have to LEAVE the obstacle behind.  And right now I can't.  The obstacle is my daughter, and well she kinda stuck with me. 

As each time i pick her up I have to evaluate how she's feeling, whether her breathing is better, worse, the same.  Is her color good, etc.   Gotta love this life.

And so I continue taking one step at a time patiently hoping that I can conquer this obstacle, and that my daughter can conquer it too.   

Good afternoon.    Its been a whirlwhind day with very little time to think.  This may or may not have been a good thing.   (still deciding )  I had to go big grocery shopping today, but my kids were so clingy I ended up taking dh and them with me.  Of course as you may imagine it was not exactly fun.     But we got what we needed, and didn't kill a kid or anything, so that's always good. 

Tracie said this in the comments about Rainee's PDA <quote>

I'm sorry and sad and pleased all at once...</quote>   That sums up the way I'm feeling pretty much.  I'm sad that Raineebug isn't whole and "normal" physically.  I'm sad and angry about it.  A lot of me is in denial about it still.  (First stage of grief right?)  And I'm also hugely greatful and hopeful that this will mean she starts becoming healthier.   

The surgeons have not called yet today.  If they don't call by the end of Monday I will start doing the mother bear routine and find out why.  Could you please pray that they DO call, so I don't have to do that routine.  I hate the phone, and I'm tired of dealing with that kinda thing. 

Did I mention that I LOVE my pulminologist.  I'm so greatful for her.  She had heard the murmur at the morning appointment (as I blogged yesterday)  Anyhoo in the afternoon the food therapist walked past me and asked how things were going.  I told her briefly.  She said Oh, I'm sorry, but I'm glad they can fix it (bla-bla-bla )  I was pleased she was that friendly.  Anyhow less then 5 minutes later.  The pulminologist came down from two floors up and stood in the hall way and talked with me for over 5 minutes to discuss what I had learned, told me to call them when I found out when the surgery was.  I'm so sorry your going through this etc.  She stepped out of her busy schedule to come find me.  I was so tickled with that.     Definitely she is a Godsend.

In regards to the x-ray stuff that I talked about just before I went.  I talked to the pulminologist about that.  And she said adult radiologists do NOT read kid x-rays very well.  And in reviewing the x-rays she felt that he went overkill.  And yes their was something mild wrong in her lungs each x-ray, but pneumonia may/may not have been a overkill diagnosis.  So that made me feel a *bit* better about my ped clinic. 

Found a baby food grinder for Rainee.  And puried the soup we had for dinner tonight.  She ate it.  And a LOT of it.  (a lot for her )  And then I tried some sweet stuff and she was NOT into that at all, just spit it up.  So I'm thinking she's a salty baby not a sweet one.  Hopefully we can get a bit of weight on her now. 

I'm not super-worried about the fact that she hasn't gained weight, Kaylin didn't at this age either.  Except I do know that she could use some extra ounces to loose when she goes through the procedure etc, so will proceed accordingly.

Okay, that's my life up to date.  Oh I had a LOVELY time at Barnes & Nobels on Wednesday.  Was there for over 2 hours.  Like candy to this mommy.  And Rainee was quite well behaved, and enjoyed looking at all the books too.   I got a bunch of kids books for decent prices (2 for each kid)  they wanted mommy to bring something home for them   And I got a couple mommy books (Anne McCaffrey books of course )  Finished collecting the Dragons of Pern series now.   And starting on the Freedom series.    

Also went into a lovely store to smile at.  Pottery Barns Kid storage.  WAy cool stuff, extremely pricy, and NOT kid durable.  But fun to look. 

Good evening.   I've been home about an hour and a half.  Today has been an extremely long day.  Raineebug woke me up at 6:00 am for the day.  This after at least 4 nurses in the night hours, so it was a way to be exhausted from the get-go

First off at 8:45 we had the pulminologist appointment.  The x-rays that my ped were concerned about they said were nothing to worry about (phew)  We talked about med adjustments (we're doing some)  Back to zantac instead of the prevacid cause she HATES the prevacid.  Trying a different rescue drug that's known to work better for bronchomalacia babies.  And then discussed the fact that she hasn't gained an ounce (actually lost 3) in the last 3 months.  As a result they decided to schedule a eating evaluation and a swallow study.  They pulled strings and enabled me to do them today rather then seperate trips.  

The result;  Swallowing she is NOT asphixiating on anything.  Which is VERY good, if she was they would have wanted me to stop nursing, and mommybear would have gotten extremely grumpy.    The eating study, she hates textured things, only purreed things.  So I'm gonna start backwards and do the pureed things, and see if I can get her to stop gagging on food.  (All of my kids have gagged a bit for a couple weeks, but this is going on 3 months)  Fortunately its not a mechanical thing like floppy esophogas etc, its just something we need to work through.  She protects her wind pipe so much she won't let any food in.

So that was 3 floors of visits and like 3 hours of running around spread through out the day.  The order of those was pulminologist, food eval, and then 3 hours later the swallow study.   After the food eval and a quick lunch in the cafeteria we had the cardiologist appointment.  My pulminologist had already said that the murmur was BAD and to expect a ultrasound.  She was right.  The cardiologist listened for a short time, and did a quick EKG.  He was 98% sure what he was gonna diagnose.  But ordered the ultrasound anyhoo.  They once again squeezed us in, so we didn't have to come back.  (Yeah!)  Anyhoo we had the ultrasound and it was confirmed.  She has  (ready for the mouthfull?)  Patent Ductus Arteriosus (PDA)  Its is normally found in new borns, and he was astounded it hadn't been found yet.  It WILL require being fixed.  BUT GOOD NEWS!  It does NOT require open heart surgery.    It will fixed with a catheter put into her groin and then a coil/spring thingy put in the hole.  (I guess)  Haven't talked to the surgeon's who do this, as they were busy, their gonna call (hopefully tomorrow)  And will set up when it happens etc.    So more details on this as time goes on. 

So what is patent ductus arteriosius?  Its an abnormal connection between the two major blood vessels leaving the heart.  It affects the child by making them tire quickly develop slowly, catch pneumonia easily (sound familiar anybody) and breathe rapildy.  If it is small, the child will appear well.  

Apparently once its fixed everything becomes fairly normal except return visits to the doctor, and testing every so often. 

I'm kinda numb at this stage.  Tired, beyond belief, and not too sure how this is gonna affect us right now.  And EXTREMELY greatful it doesn't mean Open Heart Surgery.  I'll post more when I'm more awake

Good morning. 

Its raining cats & dogs outside.  Such a lovely day to drive over to Childrens.    (Sarcasm is oooooozing here)

Rob has cleaned out the Geo for me.  And in a few minutes I will pack for our two day adventure.  I'm so praying that we will get some answers.  But God is in control right?

God is GOOD All the time ALL the time  God is Good

Your sick of hearing about her sickness I'm sure, and all I can think about is worrying about what they will find in regards to her heart.  So it will be a short blog.  Pray please

Its a NEW world record.  Shortest time required on a road trip before one has to go to the bathroom.   We got everyone in the car, all the things needed.  Buckled up.  Okay lets go.  Back up, turn around.  Drive forward less then five feet.  And Kaylin announces.

Daddy I have to go potty!

And she did.  Go figure.  It was a fun day, but oy how many potty breaks can one family take on a 3 hour drive?

Good morning.  I'm typing holding Raineebug, so if there's some extra letters, or lack of letters blame her

It is incredibly foggy outside.  And I wanted to do something fun with the kids.  Unfortunately I can NOT decide what that *fun* thing was.  snicker.  I'm sure we will come up with something.  (thinking, thinking, thinking)

So here's the deal about Rainee.  Ever since she was born we've been asking about meconium aspiration.   But everybody just kind of shrugged their shoulders, or didn't answer the question.  When she was helicoptered to Seattle they told me she had "spots" on her lungs, and possible seizures.  Of course I was drugged and Rob was puking so they *might* have told me more, but I do NOT think so.  My parents were there, and that's all they heard too.    When I first went to the pulminologist in August we got all the Hospital records.  There was NOTHING about any of that.  Well, so the doctor on Friday asked us to pick up the most recent x-rays.  I of course opened it to look inside and there were 4 radiology reports.   On the radiology report it said she had severe meconium aspiration and neonatal pneumonia.  These were things that SHOULD have had something done about them.  They did give her antibiotics at Childrens.  But we were never informed about it, and when we asked for her records this information was "accidentally" left out?  We are NOT the suing kind.  But we ARE ticked.  We need to know everything in order to put the puzzle of Rainee's health together. 

Okay fast forward.  To the first time she had x-rays when I was alert.  That was when she was 3 months old or so.  (Its all in blog form somewhere)  Anyhoo after the x-rays the doctor called me and said her bronchials were swollen, and it would be okay if she did the albuterol.   The radiology report?  she had pneumnia.  We were not told this, and they did not treat it.   Every single report said the same thing.  She had pneumonia.  She's been x-rayed 4 times, and never treated for it, except this last time.  And the antibiotics (surprise, suprise worked great)  And she's almost 100% better.    So, why the heck are the doctors not doing anything?  I have NO idea.  And I'm completely and totally frustrated.  

I would LIKE to switch doctors, BUT there's not much options around here.  

The *good* news.  Is the doctor I DO like at the clinic DID tell me the RIGHT information about the x-rays.  So maybe I should just stick to him, and ignore the other information. 

BUT WHY did we get to see this information now?  Decisions, decisions.

I'm headed over tomorrow to do the pulminologist, and cardiologist, continuing to pray that this WILL give us some good answers.