Halloween 2011

Is in the bag for us here in Ankeny, Iowa.  The kids had such a wonderful weekend full of family fun, CANDY, dressing up and even putting our Christmas tree up!  :-)  I know it seems weird that it is October 30th and our tree is up and house is decorated, but we really just wanted this done before surgery so once the craziness is over we could just enjoy the holiday season.  What's funny is, it really is beautiful in our house and it makes me want to put it up nice and early every year!  (Although I'm not sure Nick would allow that).

Here are some fun pictures of what our house looks like these days!  (NOTE:  We do have 2 trees.  The one on the left is the Hawkeye tree and the one on the right is the Cyclone tree. A.K.A. Boys tree and girls tree.)

I read somewhere...

‎...Sometimes God will remove something good from your life to make room for something better. And sometimes she'll take away better to give you her best!


All I can saw is WOW!  It is so amazing to me how God will speak to me in ways that I'm not expecting.  This week has been a bit of a whirlwind for our family.  We didn't get the news we were expecting to get for Addy, Birk was given the semi-green light for surgery and other things just didn't seem to fall into place like we had thought they might.  It is so easy for us (ME) to sit and feel sorry for myself because things are going the way I need them to go.  I have this picture of what my life should look like, my job should be, my kids should be.... and FORTUNATLY none of these are the way that I "think" they should be.

God gives me blessings....so many blessings.  Some of my blessings come in the form of heartache.  Some come in the form of miracles!  :-)  My devotion for myself today is to keep my eyes open!  Keep watching for these blessings and live in a peace knowing that just because something doesn't work out the way I want/need it to work out....that there is a plan in place and I'm just an instrument of his work!  I am here to serve.   I am here to be faithful and to continue to praise and spread the message of a good God. 

Today I'm going to take my own advice.  I will frequently tell the twins (as they are screaming for more milk, or more crayons or WHATEVER THEY NEED AT THAT POINT...) to "practice your patience." Maybe this quote is God's way of telling me "Jenny, practice you're patience. I 'm working on something GREAT for you!" 

Not the exact news we had hoped for

So I took Addy to the Cardiologist today in the hopes that he would tell us her ASD had closed and that we would not have to have open heart surgery.  He did give us this news.  Her ASD has closed to the point that it is not of concern for him any longer.  HOWEVER,  the good news ended there.  She has what we call a PFO (Patent Foramen Ovale).  With a PFO it means that the tissue of this open flap has closed, but it just hasn't sealed shut.  Since it isn't sealed shut there is a risk that blood can move from the right ventricular and can cause some issues.  Apparently 25% of the population have this PFO.  Most have no clue.  This type of defect generally works like a flap valve (according to Cleveland Clinic research).  Under certain conditions the flap will open when there is increased pressure in the chest.  This increased pressure occurs  when people strain while taking a bowel movement, cough or sneeze.  If the pressure during these events is great enough the blood can travel to the other atrium and cause serious problems.  Of these is the risk of heart attach and/or strokes.

Most people who have a PFO have no signs or symptoms.  Most do not even know that this exists until they are much older, or even deceased and have gone through an autopsy.

So, while we had a win with the ASD, my heart is a bit broken and disheartened by our news.  Addy is doing so great and shows NO SIGNS so that is good.  However, it is a struggle for me knowing that at any point (especially when she is much older) that she is at risk and there isn't much they will do now.  I told my mom on the phone, that I would have almost rather been in the population of people who don't know that they (or their children) even have this.

Tomorrow we travel back to the doctor to see if Birk is better and he gives us his green light.  Let's hope that news is totally positive and not the 1/2 positive I got today.

There is one other thing that could put a very positive spin on our week too...I guess we just have to sit and wait.

One last beautiful day...was it safe to be outside???

So we felt like we had one last beautiful weekend day and we wanted to enjoy as much as we could.  So after the kids took great naps we decided to head to the ever so popular PARK!  I thought it would be a good chance to go for a long run, so I ventured out early.  About 2.5 miles into my run I glanced over and saw our green the van drive by and 3 sets of hands waving to me.  I realized...I was in it for the long haul!  :-)  By the time I finished my run I had run just shy of 13 miles and it felt GREAT!  We finished at the park, stopped to get some markers and came home to play some more outside.  We ate dinner and now we are sitting down to color our pumpkins.

My only fear is that being outside of this house I'm not in control of the germs.  I just don't want to do anything to expose either of the kids so that surgery is delayed.  However, as we were enjoying the park and I saw the beautiful smile on their faces I decided that I can't shelter them from everything.  We need to have FUN!  They have to be kids and run, and fight and enjoy every minute of their day!  We are taking extra precautions, but we also can't 100% guarantee that he won't catch anything.  We do go back to the doctor on Tuesday for what we hope is our pediatrician's green light.  He heard some 'weezy" on Wednesday so decided to do another round of antibiotics to make sure he is good and ready. If the weeze is still there....we need to make some major decisions.  SO....If you are feeling like praying for something major for our family and putting in some extra prayers for Birk man....we would sure appreciate it!

Oh man....

My husband stayed home with the kids today and picked up a book to read!  I think something crazy is happening with the universe.

He has been talking about reading the book "Heaven is for real" for quite some time.  He finally started it today and even picked it up again after the kids went down.  :-)

I just figured since this is such a rare occasion I better blog about it.  I'm not sure he will pick up another book in this decade again.

That's all for now.

P.S. Kids are good.

Reliability

Is NOT something we've seen these past few weeks.  :-(  Nick and I have had to really adjust our schedules to make sure that kids (Birk) is taken care of on the home front.  While I appreciate people who are sick not making an appearance in our home, it seems suspicious to me that people get sick over, and over, and over, and over.  It just really is frustrating to me!!!

So, I will now step down off my soap box as the twins are running around in their diapers screaming and wanting to wrestle.

Oh, and I am the proud mother who got to experience flu shots by my self w/ two 2 year olds.  Of those two year olds my wonderful daughter decided she was going to scream, throw a colossal fit (i'm taking MAJOR fit).  It was so challenging to talk to the doctor during this fire storm of fit throwing by Addy that Dr. Andersen called Nick's cell phone after hours to discuss what we had gone through at the appointment.  While I appreciate that so that we are all on the same page, it is rather embarrassing.  So, tonight I thank Addy for that one.  Thanks for making Mommy look like a frazzled fool.  Good thing you are cute and I love you!!

We love music

No matter how much I blog (or complain for anyone who is around me) about the amount of sickness, the amount of extra work twins are, or what it takes to be the parent of a trach kid....I would NEVER ask for anything different.  These two little wonders are the most amazing thing I've ever done with my life.  They make me want to be a better person and better Mommy!!     

I am so ready...

To be done w/ sick kids.  We spent most of last night helping Birk with suctioning and listening to sweet Addy Grace with her wicked cough.  I'm hopeful this is just the left over of their colds as it is coming with no fevers or any other signs (holding my breath).

I pray for strength.  I pray for peace.  I pray mostly for healthy kids.  Rescheduling a surgery isn't the end of the world, but does put a kink in our plans.  There is so much to organize and if we have to go back to the drawing board that would mean a lot of people's 'plans' would change too.  I know that God has Birk's best interest in mind as he lays out for us what His plan is.

Please pray with us for healthy kids.  Pray that Nick and I can gather the strength and keep the hope that we need during this time.  :-)

Today I looked for a pen

I searched and searched through my training room at work.  I was frustrated and almost ready to steal one of my new hires.  Then it dawned on me...I had one behind my left ear, one behind my right ear and one in my pocket.

It was one of those days.

:-)

Week Update

Ugh!

This has been a week.

Work has been crazy for me.  I've been in a class and talking all day (which has helped keep me awake, I guess).  :-)

Birk is feeling a bit better.  He is on steroids and antibiotics to help w/ the cough and pneumonia.  It seems to be helping, however causes him to lash out and at times become naughtier than I have ever seen!!  This makes for some frustrating times in our house.  We are constantly trying to remind ourselves it isn't our fun loving, laid back little boy.  It's the steroid boy!  (good thought for a Halloween costume).

Our next months'  plans have really begun to change.  We won't be making it out to visit a lot of people in order to try and keep the twins as healthy as possible!

Halloween update:  Birk has decided to be a pirate (or Thomas thanks to a friend) and Addy will be Tinkerbell.  Pictures to come!

Ok, we're off the pumpkin patch.  We're getting as much 'away' time as we can while he is on antibiotics!!!  :-)

Could they get any cuter?

Thank you to Brian Duffey for the fabulous work you did on our family pictures.  You were able to capture the twins and their personalities SO WELL.  It just warms my heart to look at these pictures and see these big giant smiles and happy kids!  If anyone (who reads this) is interested in Brian's contact information....I strongly recommend his work!!  :-)

Being made to feel guilty

A huge weight that I've been carrying today is really been quite difficult for me and I figured maybe a good blog post would help me try and work through this. 

Since Birks' diagnosis yesterday we've been really trying to come up with a game plan for the next 6 weeks to keep him as healthy as possible.  Our current nurse is going on vacation starting tomorrow and we got notice today that they were sending a replacement and she was stopping by today.  WELL...given the fact that Birk is fairly sick I wasn't too pleased to know that someone new would be in our home and working with our son.  Someone who has NO idea about his health issues and what to watch for.  Well... needless to say I was lead on a giant guilt trip by our nursing agency because I didn't give enough notice...(as if they gave me enough notice with less than a day ... and didn't even tell me, but told our nurse?)  Anyway, my struggle here is that I feel like I'm doing what is best for my son.  I want someone who can watch him and know what is good, what is something we should worry about and what to do to help him.  I don't need to feel guilty....NOR do I deserve to feel guilty.  

I'm a mom.  I have my children's best interest at heart and I won't let this drag me down any further.  

I am happy to report that the person that we know and who knows Birk who will be watching him the next 3 days is none other than his favorite in home nurse and BEST FRIEND, Nicole. Nicole got married in June and moved away from us.  This has been a hard transition for not only Birk, but for our family.  She became a great friend of mine and someone who I totally 100% trusted my son in her care.  He loves her so very much and we are so excited that his 'Micole' is back for a few days.  :-)  

What we thought was bad...

Has only gotten worse.

So I mentioned in my last post that Birk was sick most of this weekend (much to everything we've done to prevent this).  He had a small cough and a fever off and on.  We stayed home all weekend and tried to take care of ourselves.  After an 'ok' day we convinced Daddy to take us to get some ice cream.  As we pulled into the parking lot Birk started to couch and it was a bit different than we were used to.  As Nick crawled back to suction we noticed it was a bit red.  He was bleeding through his trach.  We got him home, put some saline down and tried to moisten it as much as possible. It seemed to us to just be a dry couch which had irritated his airway.  Well....the bleeding didn't stop through out the night.  Or today.  Plus during today at one point he spiked another high fever of at its highest 102.9.

SO....off to the ER Nick and our nurse went (as I was stuck at work with a new class).  Turns out Birk has the beginning stage of pneumonia.  Yikes.  The #1 thing they told us not to get in order for surgery.  We are hopeful that with the fact that we are a little over a month (he will be off steroids soon) and antibiotics in 9 days that they won't mess with our surgery date, but alas that is a strong possibility.

He is doing good tonight, although doped up on steroids, antibiotics and Motrin.  There is still some slight irritation bleeding.  However, far less.

I make the call to Cincinnati Children's Hospital tomorrow to give them the news (the call I'm dreading a bit).  I hope they tell us if he gets better we're ok, but know that they might not tell us that.

We are asking for prayers for our little guy.  We hope he starts to feel better.  His little eyes just break my heart when he is sick.  We pray for good news with his surgery.  If we could just get rid of this Trach we feel like this type of thing won't happen as much... AND we pray for strength.  To hear what we hear.  Whether its good news or not so great news!

I also have a special thank you to give to Nick.  He really came to the rescue of not only me (who again was stuck and work and desperately wanted to be there in the ER) and came to Birk's rescue.  He was ever so  happy to see his dad when he got to Mercy.  Thanks for being an amazing Daddy and always being there for all of us.  You're a true blessing!

Saturday....blah

I usually really look forward to weekends and weekends where there is NOTHING to do.  However, this weekend has me in a bit of a funk.  I've got some pretty heavy weeks coming up at work, preparing for Birks' surgery, dealing with both kids having colds this weekend, a completely sleepless night last night and a husband who is drinking and having fun in Ames with LOTS of our friends.  To say the least...I'm in a funk.