July 26, 2010

Day by day........

Jadyn is getting stronger.

I took her outside tonight for the first time since her surgery

She was happy be be outdoors and looking for "bug houses"

None on this rock

or this one (check out those pink nails)

so we moved onto something else she loves, smelling flowers

and playing with the hose

helping Mommy water all the plants with her bucket.

Jadyn is very happy to be home from the hospital, she has been attached to my side. I can tell she is sore and gets tired pretty fast. We have been reading lots of books and watching some lots of Elmo video's. It's been 100 degrees, so outside is not an option even if she felt like it.

Jadyn's surgery and recovery was text book perfect. Her little heart wanted to be corrected, she is a true fighter and we are so proud of her.
I haven't been able to personally write and thank each one of you for your prayers and messages. They mean a lot!
Next week is our one year anniversary of Jadyn joining our family. I can hardly believe it's already been a year. I guess I better get started on a "then and now" post, as our girl has done some changing!

July 25, 2010

Home Sweet Home

Jadyn was discharged about 3 pm Saturday. We got her prescriptions filled, the car filled and headed for home.

Jadyn feels good, I can tell she is still a little weak, she walks slow and sits and looks at her books rather than running around.
She'll get there, it's only been 9 days. Most kids are hospitalized for 14 days after this surgery, she was in for 8.

Happy to be going home

July 23, 2010

Going home tomorrow

Day 7 post op and day 10 here in Spokane. I'm so glad Jadyn is doing well, we are both ready to go home!

I took my sister to the airport early this morning, Thank you Auntie for staying with us.

When I got to the hospital and walked into Jadyn's room this is what I saw.

My adorable little girl, eating breakfast alone. She was eating Cheerios with chocolate milk on top and cold sausage that felt like wood.
This broke my heart, my kids are never left to eat alone, especially at 3 years old. She didn't seem to mind the chocolate milk over cheerios, just in case you're wondering!

Jadyn has had a great day, we went to the playroom twice already and she has played with toys in her room.

She needs to have an x-ray tomorrow morning to make sure there is no fluid around her lungs, if all looks good, we can head for home. Fingers crossed.

July 22, 2010

Good bye PICU

beep, beep

As soon as I went to take this picture the large doors, way back there opened. In walked the doctor. The doctor that we thank every time we see. The doctor who reviewed her medical records for us when she was in China. The doctor who told us her heart could be repaired.
The doctor who calls her Boo. The doctor who tells me "she is why I do this job" The doctor we adore. Jadyn's cardiologist!

Our girl made huge progress today.
She got her last chest tube removed and we were moved to a semi-private room. A big room, with a couch!

Her cardiologist told her if she continues to do this well, she can go home on Saturday.
Mommy is ready, this is our 9th day here and I miss home.

Jadyn is feeling so good today, as I type this she is laying in bed eating some baked potato chips with Auntie. She hasn't needed any Tylenol today and seems to have no pain.

We took Jadyn for a walk in the hallway, she made it pretty far before asking to be picked up.
It is amazing how fast little kids bounce back after a major surgery.
She is her happy, silly self today.

July 21, 2010

We have had a great day!

Dear Doctor, When can I go home? love, Jadyn

I have had a good day, this is my after dinner treat!

I miss you Daddy, Garrison & Jeron!

5 days post op.

Jadyn took her medicine last night and this morning without any problems. We had a new nurse who had the great idea of crushing her medicine and putting it in a cherry flavored syrup. It looks and tastes like baby Tylenol, which she likes.

Plus, the girl is eating!! She ate a bowl of cheerios for breakfast, a bowl of soup, peanut butter sandwich and milk for lunch.

She got another chest tube removed this morning, we're down to one!
We have made huge strides today and I couldn't be happier.

I haven't taken pictures yet today. I'll post some later, we are planning on going for another walk when she wakes up.

July 20, 2010

Where's my Angel?

my new baby, her preemie bottle and diapers

Ohh boy, have I seen a new side of my girl these last 2 days. You know that big IV I told you that was removed from her neck yesterday morning. Well that's where all her medication was being pushed through.

Now were having to push it through her mouth. Or should I say we are trying. They have her on iron, lasix (something like a water pill), electrolytes, and Tylenol. That is given morning, noon and night. Added up, that is 12 syringes per day, and Jadyn fights it like a wild cat. She is also on a baby aspirin a day, which she use to love, but not any more!
She has the most patient nurse today, (thank you, Ms. Jackie) she has tried everything she can think of to hide it, disguise it, crush it, fool her, and bribe her. NOTHINGISWORKING! Jadyn is so leery of us now, that she won't even eat ice cream. The Doc is talking about a feeding tube tomorrow. She is just not eating enough to do herself any good.

Our days here are adding up, she is still in the PICU, her chest tubes are still busy draining. We were well informed of the likely hood that she would retain fluid in her chest for a week or so. I was just really hoping she would do as well as she did with her Glenn surgery, 72 hours and we were home.

Medically, she is doing great. Her heart, pressures and valves are in excellent condition, the Docs couldn't be more pleased.

My sister has been a life saver, sitting in this small room with me hour after hour. We did go for a long wagon ride today, enjoying different areas of the hospital.

July 19, 2010

Another day in the PICU

The service is good, she gets Popsicles handed to her with a wash rag wrapped around the stick so her hand stays warm and dry!

Jadyn and I are watching a Barbie video, the PICU is very quiet today. That's always a good thing. I was hoping she would get transferred to a regular room today, but her chest tubes are still putting out enough that she needs to stay where she is. Maybe tomorrow

She did get the central IV line removed from her neck, big step. She still has a small line in her foot that they will give her pain meds through.

Jadyn has been put her back on oxygen because it aids in healing. Lets just say, she did not agree with this decision, but the Doctor won. He apologised to her by letting her take another wagon ride.

Yesterday afternoon we got a surprise visit from my good friend Sarah, her boys and Garrison. Not sure if he missed his Mom or wanted to see his little sister. I'm going to say it was both!

15 year olds can be sweet and tender.

This is how it is when your big bro is around!

July 18, 2010

Grouchy Girl

Ohh man, this little girl can get mad! I don't blame her, I probably would be too in her situation. She is really mad at me for some reason and wont even let me kiss her. I kissed her hand and she whipped it off. : )

I asked her if she wanted Mommy to go and she said "no" so I can stay, I just can't love on her.

She took a small step back today, her chest tubes are putting out alot more fluid than they have been. The Doc's say it is totally normal but they want to keep a close eye on. She is also very puffy from fluid retention in other areas. They have added some medication to her IV line to help with both.

We have found she does not like morphine, it makes her sick to her tummy and in turn hurts her chest when she gets sick. So, some anti-nausea med was also added.

Daddy and Jeron left for home this afternoon, work tomorrow. It's just Jadyn and I until tomorrow eve. My sister is flying in, Jadyn will be thrilled as that is "her Auntie' and her favorite person.
It looks like we will be in the PICU for another day at least. I will be staying in a Ronald McDonald room on a different floor tonight; once she is moved into a step-down room I will be able to sleep in there with her.

July 17, 2010

I just had to post a picture of the monitor. (even fuzzy) 98! That's her oxygen saturation. We never expected our girl to have that high of a number. It's now better than most people without a heart condition.

We are so grateful to our wonderful surgeon and cardiologist. Jadyn could not be in better hands.
We have spent the entire day in her very tiny PICU room. She will hopefully be moved to a regular room Sunday or Monday.

finally a smile.
I don't want to scare you with too graphic pictures, Jadyn's wound was closed with glue. No steri-strip like last time. So it's there for all to see.

Wagon Ride

In no mood for a picture!

The doctor had asked Jadyn's nurses to get her out of bed today. Would I have? No way! But she loved it and didn't want to come back into her room.

Jadyn is doing really well as you can see in her pictures.
She is very tired, and is taking lots of cat naps.
She enjoyed some Tomato soup and milk for lunch.

So far today they have removed an IV line from her wrist and the oxygen line that was on her nose.

No More Fever

They say miracles do happen, and I totally believe it's true!

Last night we went to bed knowing our daughter had a 104 fever. Just hours after having open heart surgery, we were honestly freaked out.

This morning we walk into her room and her temp without medication is 98.6!
She's sitting up drinking 7-UP. It just does not get any sweeter than that.

She is breathing room air and her oxygen saturation is 96, this girl has never seen the 90's. 11 months ago in China she was 66.

I am using a hospital computer to update so I can't upload a picture. I will get our lap top from the hotel later so you can see her sweet pink face!

Thank you everyone for your messages!!

July 16, 2010

I love pink

pink lips, pink finger nails and super pink little toes!

Jadyn is doing great, her breathing tube has been removed, she is only on 2 liters of oxygen and on saline drip! Her doctors are amazed at how well she is doing.
She does have a temp of 104, which has Ames and I very worried about, but her Doctors feel it is from surgery. They are treating it with 2 different fever meds. every 4 hours.
She is begging me for chocolate milk, but all I can offer her is a syringe of water every ten minutes. Maybe tomorrow will be different.
We are so happy this day is over and Jadyn is doing so well. Our brave little girl has not shed one tear today.
Thank you everyone who has left us messages, texts and face book comments, they mean alot. We are off to bed, it's been a 15 hour day at the hospital.
She's out of surgery and her oxygen saturation's are already in the 90's

She did great per the surgeon and her cardiologist. We will be able to see her in a little while.

We feel so relieved!!

Good-bye to those purple velvet lips!

In Surgery

They took Jadyn to the operating room at aprox. 7:15 am. They said to expect 4 hours!
I am tied in knots, I want it to be over and hear everything went fine. I want to hold and comfort her.

For a few minutes this morning we thought her surgery was going to be postponed. She had a low grade fever of 100.1 and was in some pain from the heart cath and coil procedure.

The surgeon feels it was from her coil procedure and sleeping on that side. I could tell she was in pain. After being up for about an hour the fever was gone and she was feeling better.

They also gave her versed which makes her like a happy 21 year old!

I will update as often as I can.

We had a relaxing day, we stayed in our hotel room and watched cartoons until it was time to visit the surgeon. I was glad Jadyn & I had a day to spend together, we went for several small walks around the hospital campus and waited for Daddy and Jeron to show up.

July 14, 2010

Long day at the Hospital

Just wanted to post a quick update, I have gotten several text message. Sorry to keep you all waiting. We have been at the hospital since 5:30 am, it's now almost 8:00 pm.

Jadyn did great today, she was extremely brave and totally surprised me with her willingness to let the Doctors and Nurses touch and poke her. No tears except for the 2 failed IV attempts. I told the nurse "no more, Please do it when she is sleeping". During her last cath 10 months ago she was poked 5 times, I told myself I will never allow that to happen to her again. The nurses were great and agreed that it was not worth the stress on Jadyn.

The cath went great and her Cardiologist was very happy with her heart function, valves and pressures. Jadyn did have a procedure that was unexpected during the cath. She has/had something called Systemic Venous Collaterals. Put in my terms means, she had several extra small veins to supply blood from her pulmonary artery to her lungs. These veins are the body's way to trying to replace the oxygen to her lungs that her heart defect deprived her of.

They did a very fast and common procedure called Coil Occlusion. This cuts that supply off. She won't need that extra blood supply with the correction she is having on Friday.

We have a appointment with her heart surgeon tomorrow and the rest of the day is free!

Telling Daddy all about her day

July 11, 2010

Good-Bye Maui

We had such a great time, it was sad to say Good-Bye. The people of Maui and visitors alike are so friendly, we met a lot of nice people. We arrived home Saturday around 8 pm.

Jadyn enjoyed all that we did there, she is such a easy going kid. The highlight of the trip for me was when we took off her sandals and let her walk in the warm, soft sand for the first time. The smile on her face was priceless. I didn't have my camera with me, but I did have my phone.

The boys had a great time as well. Garrison said he could stay another week. Jeron loved the pool, there was a cave with a waterfall, that is where he would hang out!

Here are some more pictures of Jadyn "posing" this first one was taken right before she chased a wild chicken and tripped over a parking curb. She got another skinned knee and a nice goose chicken egg on her forehead. She is not good at watching where she is going, she had one thing on her mind, that Chicken!. Who got away....

she loved all the wooden carvings around town.

Friday we visited a dormant volcano called Haleakala. It was very interesting and cold at the top

Above the clouds at 10,023 feet above sea level!

We were very cautious taking Jadyn this high, we went slow and watched her closely. She did great and enjoyed the view.

We would again like to thank Make a Wish and Maui for this wonderful opportunity you provided for Jadyn and our family.

Tuesday evening we leave for Spokane. Jadyn has her first procedure, a heart cath. at 6 am Wednesday morning. This is always done before heart surgery. It gives the surgeon a great look at the valves and pressures of her heart.

Her heart surgery is Friday morning at 6 am

Again, I will post as often as I can to update the many family and friends who follow her blog.

July 10, 2010

Beach Bum

Jadyn loves the sand and ocean. She will stand in the water and let the waves crash onto her legs. I knew she would love it here, this trip has been all we hoped it would be for her.

Jadyn & Daddy enjoying the sunset

July 08, 2010

Busy Hawaiian Tourists


On our way to breakfast.

later, we enjoyed some more pool time!

In the evening we went to a fabulous luau. Jadyn loved all the hula dancers and kept asking if it was her turn to go on stage to dance. She is fearless!

They cooked a pig under ground, boy did it smell good once they dug him up up. Jeron opted out as the visual part was too much for him. Our meat comes out of a package in his eyes! The rest of us sure enjoyed it.

yes, we got more lei's put around our necks, that's 10 total so far!

We went on a car ride on a road called Road to Hana. It was long and beautiful.

Here are some facts about this road:

617 curves, 52 miles, 56 bridges (most one lane), 3 hours

You can pull over to see many beautiful natural sites. Garrison enjoyed climbing up and over rocks to get some great waterfall pictures and pools of crystal clear water.

I assume the 3 hours is one way and no stopping because we were gone about 8 hours!. In the town of Hana there are black lava beaches. The lava is so soft from the surf it was like large sand pellets. This was one the the prettiest places I have ever been. We walked through lava tubes and played in the ocean. Then began the journey back.

Hawaii's version of the Great Wall