Wednesday, October 31, 2012

Big Smile....

Happy Halloween!!

this pic just makes me smile!!!!
More on Halloween later:)
by the way its great to be home
so happy to have been able to spend it with my family and friends!!!

Tuesday, October 30, 2012

Going Home!!!!!

Our sweet nurse practitioner Kimberly just gave us the thumbs up for release TODAY!!!
I will be taught all the ends and outs of catheter care, bags, laxatives ect and home we go.
To say I am excited to be going home is an understatement!!! A very sweet lady with Delta moved
our tickets to this afternoon and waived the fees since Janie has been hospitalized.
 We will get home around 6:00 this evening.

Again, thank you for all the prayers. This has been a hard yet worthwhile trip to Cincinnati. I am very thankful for God's mercy on Janie and a successful surgery. The next few weeks will be a challenge with managing her bowels and cath but thankfully it is only 2 weeks and we will be at home!!

I'd better go pack up our room, we will look like the Beverly Hillbillies trying to get all our stuff out of this hospital. Thankfully my guardian angel Val will help us. I figure we will look just like we did when we moved all our stuff into the dorm many many many years ago, only we will have the "help" of prissy pants:)

Monday, October 29, 2012

Oh Glorious Day........

Janie is released to EAT!!! Dr. Levitt says she looks great and get on with that eating. She told him all 100 things she wants to eat. We ordered a hamburger, french fries, chips, carrots........she is chowing down right now:) Her hamburger is 2/3 gone already haha!!!!

The plan is that she will be released TOMORROW and we can fly home on Wednesday afternoon:). I will have to be trained on cath care and will start putting on diaper rash cream NOW since I've learned that is the hardest part of this journey.

Needless to say there are 2 happy girls at CCH right now!

Ya think she is hungry???

She ate the entire hamburger! What cracks me up is that she rarely eats 
hamburgers at all, yet that is what she has asked for.....for days!!

hamburger in one hand, carrot in the other
who said hospital food isn't good???

Again, thank you for all the prayers!!
The last few days were TOUGH but it is past us now
whooooooo hooooooooo!

Sunday, October 28, 2012

Self Pep Talk......

We are starting to see the light at the end of the tunnel over here. It is so nice to think that we are beginning the last week here, amen!!! Hank was on the receiving end of a few melt downs on my part yesterday. I'm missing my family and it's tough being the only one getting the sassy end of the princess over here.

She got up this morning happy and talking about hamburgers, tomatoes, french fries, cucumbers, apples, chicken, chips, the list went on and on. Whenever anyone comes in our room she tells them what she is going to eat on Tuesday or Wednesday (Lord willing!!!). I'm looking forward to getting to eat when she is not asleep or trying to sneak out of the room to get something. My diet has been so weird these last few days!! Thankfully it does not bother her to see me drink anything. I have spent some time "looking out the window" while shoving in a zone bar:). She likes to go get coffee with me in the morning in the parent room. I microwaved some oatmeal and she asked me what it was. I told her it was oatmeal to use as a mask on my face to help my skin. She bought that!!! haha....... I "looked out the window" as I eat my breakfast every morning!

Here are a few things I'm thankful for as far as life in the hospital goes:

Messy ponytails are in style
You can wear your glasses for days on end
PJ's are acceptable clothing choices
Nurses act like they don't notice the huge zit on your nose (seriously it is my second nose)
Arguing with a 4 year old is as normal as breathing
watching tv for hours on end is recommended for said 4 year old
No showering for days is normal and acceptable behavior
Wearing swimming earplugs to bed ( I am so mad I did not think of this sooner than night two at 4 a.m. while child next door is screaming alllllllll.night.long. AGAIN because his lousy parents go who knows where all.night.long. I am so sad for this little boy, he is the cutest little boy!!! Our nurse said this happens a lot, parents going home or hotel to sleep, while little one stays by themselves........I cannot imagine doing that to a poor baby....sign.....)
Staying on computer too long when said 4 year old is watching tv too long and not feeling guilty
Playing with playdoh is a sport, I am actually getting quite artistic.....
Nurses who love their jobs
Artistic abilities improve.....Janie is finally not telling me "no do it like Lauren" haha, I've never been known for my artistic abilities!!!
Entertaining Male Nurses, Janie loves them!
"Fred" becomes wonderful comedy
Chocolate and wheat thins count as a meal
No discipline for 4 year olds, anything goes to make one happy
Knowing all the words to a Dora the Explorer episode
Wonderful playroom on the 6th floor ( wearing PJ's is acceptable there too)
Nice people in hospitals!
Last but most importantly my rescuer Val who allows me some moments of sanity:)

Ok I am going to focus on these things the next few days. Most of all I am thankful that we are in this hospital for a surgery that makes Janie's life more comfortable. I am thankful for CCH and their vast knowledge in this procedure. I know many families that have struggled through the maze of doctors to finally end up here for help. I am thankful to have been led here first!
Thank you for all the prayers for our girl!!

Saturday, October 27, 2012

Long Nights and Long Days.......

It is still Groundhog Day here......

I was brought back to reality this morning as a watched a little boy come into the play room with his family. The top of his head was shaved and he had a huge scar ear to ear. In the words of Jeff Mounce "it can always be worse". Our time here is merely and inconvenience, hard for us but an inconvenience nonetheless.I am not worried about Janie's ability to live a good long life, she will be able to have that and a more comfortable one now that she has had this surgery.

Now we will try to pass these days the best we can. Last night was super long as Janie got up many times for various reasons and the little boy next door cried.all.night.long........

Janie has had a good day so far, we visited the play room and she played with toy food of all things and never acted as if she has not eaten in 7 days.

We now have a truce in the diaper changing area, she stands up and holds all the thingys I need and helps...working soooooo much better!!! Also I tell her she gets a token each time and she told me I have to lose one each time:). Hank, start adding a bunch of tokens for her in her cup!!!! My punishment will be time out to my bedroom when I get home!!!

I miss my family!!!!!!

playing in the "kitchen"

snuggled up and watching Mirror Mirror
I can not tell you how thankful I am for Netflix
It ROKKS (that was for you Uncle John:)

Be sure to check out Mary's blog
God is performing some miracles
in precious Ivy Joy:)

Friday, October 26, 2012

Bossy Pants Has Left the Building......

and Sweet Cheeks has entered:) Yesterday was rough being bossed around every moment miss Sweet Cheeks was awake. She has been up since 5:30 this morning but has been happy and sweet to her Mommy. You know you are relieved when it is not a big deal to be trapped in a 12x12 room for hours on end!

She is now napping. Val is coming to relieve me for a few hours so I'd say today is a great day:), thank you my sweet friend!! It is also a good day when Sweet Cheeks lets me change her diaper without a fuss, the last 2 have been easily done:). Keep those prayers coming, I sure appreciate it.

That's about it!

Thursday, October 25, 2012

Starting to Feel Ground Hog Dayish.....

The days and hours are all falling together in a big ole blob. Miss Janie is tired of all the new people coming into our room and looking at her. She had a major fit over a diaper change again this morning but got it together after a bit. She is bossy and grouchy still and so is her Mommy!

I got her happy playing with color wonder markers and after 5 minutes she said "I tiiiiwwwwed, I don't like tiiiwwwwed". Poor thing just does not feel good. I did convince her to take her oral antibiotic finally. It is very hard to convince a 4 year old that she has to take medicine but can't drink anything!! Once convinced she kept putting it back in her mouth, my guess is that even medicine starts tasting good when you can't have anything. She has been a trooper about not eating or drinking. She has only asked a few times and I promise her that once she can eat she gets to choose anything she wants.

I have managed to get a few smiles out of her yesterday and today. Last night one of the nurses was a man with long hair and a beard wearing a rainbow tiedye shirt. He asked her if she would like him to put his hair in pig tails and she laughed, it was so funny. Gardner, I think he reminded her of you. She kept asking if he would come back to see her and he did. Another male nurse got her to laugh this morning when he had a hard time getting small gloves on, he acted like he was struggling with them and then shot them across the room into the trash like Daddy does:).

I think we will lose the pain pump today, so we will also lose some of the beeping as well. She goes for a time when she is not painful and then gets very uncomfortable. They have been giving her some Valium for for bladder spasms and that seems to be helping as well. She has been thrashing around this morning trying to get comfortable so she is about to get some happy medicine now:). I'm not thinking they will let me have any....hmmm:)

I'm anxiously awaiting an Ivy update from Mary. Last I heard she was in ICU from surgery, amen!

Here are a few pics that I could sneak in!

putting on make up

first smile when she got to get in the wagon:)

I did not even get this posted before pain management came and took her off the pump and off to the playroom we went. My rescuer Val met me up there and I went for a little run and ate some lunch. It felt so good to go outside. Thank you soooooo much Val for giving me some sanity this week!!!!

When I got back to the room Janie had received a wonderful gift from Diana and Jennifer. She LOVES her goodies and new gogolay!!! For those who don't remember we sent Janie a big pink dog to China and she brought it with her when we received her. She calls it gogolay (doggie) and now has a sister doggie to:)

we had to wear masks to while the nurse was hooking up a new med to her picc line
she wanted to send a picture to Gardner and Kendyl:)

playing in the playroom, 
I'm sure we will be frequent  visitors!!

playing with her loot from Diana and Jennifer:)

Go check out Mary's blog for an awesome Ivy update, I cried like a baby!!!
God has answered in such a beautiful way!!!

Wednesday, October 24, 2012

Say a Prayer for Ivy.....

Sweet Ivy went to surgery at 7 this morning. Click on her button at the side to get updates throughout the day from Mary, and please pray for her and her sweet family as they wait...

As far as miss Janie, she is a bossy trooper this morning! A little whiny but I am too:) So far she has not asked for food or drink, amen! We are hunkering down for our 7-10 day stay. She is occupied with play-doh for the moment and I am answering her orders of what she wants made out said play-doh! Hank left a while ago to go back home.

Before I could publish this our nurse came in to check her incision and change her diaper and it was an enormous fight. She sure is strong, and strong willed!! I think she must feel very out of control and confused by all this, and of course not feeling well on top of that. Prayers please:)

Tuesday, October 23, 2012

Out of Surgery.....

Janie is out of surgery. Docs say it went very well. Our only surprise is that she will have to keep her foley cath until her recheck in November. This will aid in healing by keeping her bladder empty. I'm  trainable. They said she had quite a bit of scarring and wanted to call the docs in China to ask them what in the heck they were thinking!

I'm anxious to see my baby!
Thanks for all the prayers!

In Surgery.......

Janie was so happy all morning until they came to take us down for surgery. She was frozen sitting on the bed ,a nurse took one look at her, gave her some versed and she was smiling:). She started saying poopy pants and smiling, it was so cute. This Mommy needed that! We were able to be with her until they put her to sleep. Hopefully they will be done around 2 eastern time.

One funny thing she did yesterday: When she was on the potty I tried to sneak a bite of a cookie where she could not see me, I went back in the bathroom after drinking water too and she said, "hey what is that's cookies", and let out a long sigh. haha! Don't think I'll be able to pull one over her over these next 7-10 days!! She has been ok with me drinking coffee so far so hopefully that will continue!

Thanks to all our family and friends for all the prayers!!

Monday, October 22, 2012

Let the Games Begin......

We checked into the hospital bright and early this morning. Janie is not as trusting this visit, thinking she is suspecting something....ya think????

So far she was sedated for her picc line placement, thank goodness, and a gtube placed down her nose for clean out, that was not fun..... She has gotten sick a few times but after some zofran she is snoring away......wondering when the free falling of poo will start?????

Janie seems sad today since so much has been happening to her, she has had her uncertain "China" face on:(

Child life has been great, bringing her crafts ect......

We'll keep you posted. Surgery is now scheduled for 12 tomorrow and should last 3-4 hours we were just told:)

picc lines are cool when getting blood work! 

that's the best smile I could get, sweet baby

You have to go check out Lauren's blog here to see what a cool sitter she is, I'm still laughing!!

Saturday, October 20, 2012

It's Time......

It's time to take this little princess back to Cincinnati
for what we hope is her last surgery.

We leave tomorrow 
she will be admitted bright and early Monday for picc line placement 
and clean out, yes I think it is as yukky as it sounds
so please pray for my baby.

Her surgery is scheduled at 7:30 Tuesday morning. 
She is having what is called a "pull through" procedure, 
which was done in China,but needs to be redone.

The hard part will be the no eating or drinking for 7-10 days....
My prayer is that she does not feel hungry due to nutrients through the picc line.

Hank will be heading back on Wednesday to hold down the fort at home
with the help of sweet Lauren (check out her blog).
 She will be keeping John David and Madeline while we are gone
and basically being me, so please keep her in your prayers as well!
We are so very thankful for  her willingness to jump in and be a part of our family!
All the bigs will be jumping in as well after work, school, ect....
it takes a team to keep this machine going:)

Alrighty then
I think this about sums it up!
We appreciate all the prayers!
Please pray specifically for:
our surgeon, successful surgery, rest, no appetite for Janie,
activities to keep her occupied for days:)
John David and Madeline since I will be gone for 2 weeks,
Lauren, that all will go smoothly with no melt downs from you know who
Hank as he juggles work and being solo
Me, sleep!
 If I can get some sleep while staying in the hospital for this extended time, I will be good to go:)

I'm sure I will think of more as we go along.
I'll keep the blog updated as much a possible!

And last but most importantly,
please continue to pray for sweet Ivy Joy!
Here surgery was delayed and is scheduled for Monday or Tuesday.
click on her name to go to Mary's blog for updates. 

Sunday, October 14, 2012

Hail State......

Saturday was the big UT- Ms State game and we are a divided family:)
Ma Kitty and Grandpa Jim came in town on Friday and went with us to Starkville on Saturday. Needless to say we were not able to stay for the game since it did not start until 8:00 ugggg. Anyway we hung out with Julianne and tailgated a while before heading home and watching the game in the comfort of our home.

I have to say as a UT fan and graduate, I was happy for State's win. They deserved it!

Too many pics to post for the day but here they are anyway:)

walking with her sister...

 a typical look:)

one dressed for UT, the other State

lots of playing on the field...

and running on the field....

and climbing, cracks me up how all the big kids are watching her climb....

and running again...

and again....

the fam

and resting......

Sorry Ju for the sun on J's eyes!!!!

and more resting.....

all done:)

It was a great day!!
Thanks Mom and Jim for surviving the heat!!!
We loved seeing you and miss you!!!

Wednesday, October 10, 2012

Spread the Joy for Ivy Joy!!!

I have posted before about sweet Ivy Joy
She is about to undergo her 2nd open heart surgery in Boston
Please please please......
 hop over to my friend Diana's blog to see what you can do to help this precious child!!

Saturday, October 6, 2012

Look At This Getup!!

We are having our first "cold" morning of the season.
John David and his friend John Parker were going through drawers looking for hats, gloves ect...
I was on the computer and heard Janie talking about finding "my stuff"
This is what she came up with!!!!!

Too cute and so proud of herself:)

Thursday, October 4, 2012

Just Thoughts....

 I have been filled with many thoughts lately as we approach Janie's next surgery......thoughts of dread of my own suffering and hers and the rest of our family, yes selfishly I really don't want to suffer. I read the emails from Cincinnati and feel overwhelmed with thoughts of picc lines, npo for 8-10 days, dilators, no enemas for a month (enemas are my friend now).....oh and that I will be alone from 2 days after her surgery until they let us come home hopefully 8 days after that......and that Madeline will be without me for 14 days. Hank will also be alone at home taking care of the 2 other hooligans.....he is scared too!!

All this to say, I have been thinking a lot about suffering. I have had a share of suffering yet I know that does not exempt me from more suffering. Christ called us to suffer. I suffered today through many bouts of whining....seriously I call that suffering! Why is it that I want relief when I suffer??? Even in the little things like whining divas?? It seems like yesterday that I begged God to end Jeff's suffering as he lay dying. I remember "getting" what Christ must have felt when he asked why God had forsaken him.....He was suffering as none of us will ever experience, yet I wanted relief for my husband....... as I want relief now from a little whining and a surgery that is not life threatening but giving my child a chance to live a better life. Janie suffers daily from her need yet she does not even know it.....she is content with the way her little body works.....she is not even aware that she needs relief........doesn't God tell us to have faith like a child?

There is one important thing I learned through hard suffering......God takes over..... I felt Him as I never had before......I depended on Him as I never had before........I was frightened of going back to my old self when the suffering became more bearable....I was afraid of being far from God. That in of itself makes suffering worth it. I believe I have lost sight of the truth of suffering.....since I have not had gut wrenching hard suffering in quite some time. I don't think Janie's surgery and all it will entail is even close to gut wrenching suffering, yet I dread it all the same. My prayer for myself and our family is that we will find this upcoming trial to be one of growth towards God and each other. I'm betting that is what His plan has been all along.....

                                                 ........and of course she is worth it...........

Psalms 22:24
For he has not despised or disdained the suffering of the afflicted one; he has not hidden his face from him but has listened to his cry for help.