Friday, August 15, 2014

Fontan Pre-Op

Waiting for our fist appointment.
Waiting for the E.K.G.
Ready to move to appointment number 2.
So Sweet.
I love that face.
The reality of blood draws.  Just heartbreaking.
Got her foot.
On our way home.
Watching Cookie Monster.
Seeing her best friend, Elmo.
So I know pre-op day is always long and stressful, but we left our house at 6:30am and didn't return till 8pm so it was a very very long day.  Raygen was pretty stressed the whole day.  Her day started with an x-ray, meeting the cardio nurse, ekg, and vitals.  Then we had a break between appointments so we thought we would get the dreaded blood draw out of the way early so we wouldn't have to worry about it all day.  So we went to the lab and it took 4 people to hold her and two pokes, but they were able to get blood from her hand.  We thought the day was going too easy so we were not shocked to learn from Dr. Chen, Raygen's surgeon, that her blood clotted and the test he needed before surgery was not able to be performed.  We met with the anesthesiologist nurse and then after speaking with Dr. Chen around 2pm we headed back to the lab.  About an hour of waiting someone was finally brave enough to try again on Raygen.  You could tell the nurse was nervous, but I laid down my ground rules ahead of time.  They get two pokes and if they can't get it then we leave.  Thankfully he got an vein in her foot and was able to get just enough blood for the test, but we left right after so if they were able to do the test on the blood I am not sure.  Knowing Raygen's luck it probably clotted and they will just have to run it again while she is in surgery.  For surgery she is so far the only one on the schedule on Thursday, but that will change.  She is first case so check in should be around 6am and surgery starting around 7am.  Dr Chen said it should take anywhere from 4 to 5 hours and they may not have to even stop her heart which would be amazing.  That is the scariest part for me when I get that page that they have stopped her heart.  Worst feeling ever.  To say I am stressed and worry doesn't do justice.  Seeing how stressed and scared Raygen was yesterday just makes me cry.  It is so hard since she doesn't communicate.  You could tell she knew what was happening and all she could do to voice her feelings was cry and it's heartbreaking when their reaching for you and you can't just scoop them up and run. 
This is our last weekend before surgery so I will be packing and preparing.  My main goal is to have lots of snuggle time with both my girls and not to leave our house.  
I just keep repeating "God does not give us more then we can handle."


Wednesday, August 13, 2014

8 days to go...

Raygen having some Papa time yesterday.

Yesterday Raygen stayed with my parents and I was able to have a Mother-Daughter Day with Zoie.  I love to spend some one on one and reconnect with her before we take off.  I will miss her so much while we are at the hospital.  We went to Red Robin for dinner and hit Toys R Us and got Raygen some things that will help keep her busy hopefully in the hospital and Zoie picked out her Breyer Horse she has been wanting.

Tomorrow is pre-op.  We have to be at the hospital at 10am and then Raygen will have echo, ekg, a blood draw, and we meet with several other doctors to plan for Thursday.  I am not sure if they will give me her surgery time for the 21st, but I am not sure that is a bad thing.  I get such a nervous stomach as I type this post today.  I remember thinking the Fontan was so far away and now I realize it isn't.  Pre-op is always a very long and exhausting day for all of us.  I really pray Raygen handles it well and I really, really hope the blood draw goes smoothly.  Raygen is such a hard poke that it usually takes several tries and it really upsets and stresses her out as it would any child.

I will post an update tomorrow when we get home and hopefully have all good results tomorrow.



Tuesday, August 12, 2014

It's 90!

Okay so weather in the Northwest is very unpredictable.  We never have "really" nice weather so when on that rare occasion we have a day in the 90's we are kinda excited.  We found this great mermaid tail for Zoie on Etsy and she received it yesterday.  She was so excited.
She had such a great time swimming in the pool with it.  How I love to see that girl smile.
On the other hand, Raygen got a chance to splash around a little in the pool and then decided to take a late nap and snuggle with dad.
I love to snuggle with this girl.  Her and Dad made sure to sit next to the ac, but she still worked up a little sweat sleeping.  That's one thing about heart babies, they sweat, or at least mine does.

Hope everyone else is enjoying the sunshine.

Surgery is 10 days away and pre-op is Thursday :(  Coming up way too fast.



Friday, August 8, 2014

Tuesday, August 5, 2014

Ready to go...

Raygen now walks to the door when she is ready to go.
I can not believe she is walking so well.  She loves being able to walk.  You can just see how proud she is by the look on her face.  Plus we all cheer for her too!  :)



Sunday, August 3, 2014

19 days...

So there is only 19 days till Raygen's Fontan.  As it gets closer it seems to be a constant thought of mine.  No matter how busy my day is, August 22nd is always on my mind.  I know I should somehow be preparing, but how do you prepare?  I remember I over prepared when Raygen was born and once she was born all my planning went out the window.  Now I have learned you can't plan for the unknown, no matter how hard you try.  I feel like if I was planning somehow I would have some control, but I know I have none.  I know it would take me about an hour to pack everything we need for the hospital.  I have done it before and pretty much know now what we have to take so I will probably leave that till the day before.  I know I want to buy some stickers and bubbles for Raygen and of course she will have the ipad and other then that I'm not sure what other comfort items I will take.  She isn't attached to a stuff animal or baby doll so I don't think she necessarily has one except for me.  The one thing that keeps crossing my mind is how bad I want to take Raygen to the zoo.  I have no idea why it is such a big deal for me, but it is.  I'm sad that we aren't taking her before surgery and I know the weather probably won't be great after so it will have to be next summer.  With surgery so close we are keeping Raygen somewhat under house arrest.  We can not risk any sickness or infections what so ever.  I am sad lately.  I am sad that each day that passes is closer to a day where my daughter will have open heart surgery for the third time.  Looking at her now playing I wouldn't think it was time, but I am trusting her doctors and God to know when its "time."  I remember before her second surgery I was ready because Raygen "needed" it badly.  With the Fontan it's harder because she is doing so good that you really wonder if we should wait.  She is walking like crazy lately its so exciting and so scary.  I know as each day passes my emotions are going to be all over the place because there is nothing scarier then your child being sick, hurt, and scared and there is nothing you can do because like I said before there is no preparing for the unknowns.



Wednesday, July 30, 2014

Raygen and her bubbles...

I think this has to be one of my favorite video's ever of Raygen.  I love how she is trying to do things by herself.  She is showing us her independence streak.

Monday, July 28, 2014

Raygen and the new Kitten

Zoie got a new little kitten at my mom's house and I thought it was cute the way it just watched Raygen play yesterday.  Raygen paid no attention to it, but it paid close attention to her.

Friday, July 25, 2014

Hanging out at Grandma's

Who needs toys when you have boxes and...

buckets, lol!

The blocks had to be lined up in a certain way :)

My Mermaid
So our week has been so crazy.  Raygen still hasn't been her total self so yesterday we took her to the doctor again.  Everything looked okay, but her right ear drum was pretty red so we are doing drops to try to avoid any infection.  If she is still fussy in a few days we may have to go back and check if her UTI is gone.  I really hope the antibiotics worked on the infection because we are less then a month away from surgery and she needs to be off them at least two weeks prior.  Wow! Less then a month away from the Fontan.  That thought just makes my stomach hurt.  
On other news the girls hung out at grandma's yesterday afternoon so I could get things caught up at work.  As you can see I think they had fun.  My girls love hanging out with Grams and Pops.  They are totally spoiled there, but I wouldn't have it any other way.

Hope everyone has a nice weekend.  My goal is to get my baby feeling better and then keep her that way.  It's suppose to be in the 80's here (which is hot for us Washington people) so we may be indoor with the air conditioner.  Raygen doesn't handle the heat too well.