HOME

Thankfully we made it home. We couldn't be happier!!!

We also couldn't be more exhausted. So I am going to take the next few days to uplug from the blog, facebook and and my phone. I feel like I need to rest for a little bit to make sure I don't get sick with a cold or anything. I also just need some time with the fam. So until next week I will leave you with these happy pictures of my very happy children.

XOXO,

Jillian

A Love Story

THE DAY AFTER TASIA GOT OUT OF THE HOSPITAL SHE WROTE THIS FOR ME.

 I WILL CHERISH IT MY ENTIRE LIFE!

---------------------------------------------- 

Dear Mama,

This is for you because is reminds me of the 900,000,000,000,000 different ways I love you.

THE SAD CLOUD AND THE HAPPY SUN

By Tasia

I am the cloud.

I have had a hard day and I just feel like crying. 

I am sad and lonely, so I just sit there.

You are the sun.

You see me and start to come over

You see what is wrong and will try

to make me feel better.

You ask and I tell you I had a hard day

and that I just feel like crying.

You make me feel better and

YOU MAKE ME SMILE.

You make me feel better and I am happy now

And whenever I feel unhappy

I go to....

YOU!

THE END

I LOVE YOU LITTLE GIRL! I HOPE YOU ALWAYS KNOW THAT I AM YOUR BIGGEST FAN AND YOU CAN ALWAYS RUN TO ME AND I WILL ALWAYS BE THERE TO DRY YOUR TEARS AND MAKE YOU SMILE.
XOXO,

MAMA

Girls Day Out

Tasia and I have felt pretty claustrophobic the last week knowing that our time to go home was right around the corner. The apartment has seemed smaller and darker and it made me realize we needed to get out. So today we ventured to the movie theater and saw Mirror Mirror together. It seemed so perfect because we have always watched Snow White together every single time she's been hospitalized for pancreatitis so what better way to seal the deal than to see the remake of it as one of our last memories of this time in her life. It was just perfect. We even ate hot dogs and nachos and of course washed it down with a big Coke 0. The junk food tasted great - take that pancreas!!!

Afterwards we went and shopped around until she found the perfect "going home dress". A very special person in Tasia's life sent her some $$ and told us to buy her and I something lovely with it and Tasia chose dresses to see her family in for our homecoming. Sigh... She's a girl after my own heart.

We finished the day with her favorite Minnesota drink, a sugar free caribou coffee. Yes, I know she's only 9. I also know there are no caribou coffees near us so it's a MN treat ;)

We came back to the apartment and finished the evening catching up on our favorite family time show Modern Family and we ate pizza too (take that pancreas - ha ha).

I am so thankful for such a beautiful day with my most favorite girl in the world. She's so fun to spend time with and I cherish my relationship with her.

XOXO,

Jillian

ALONE

This morning I woke up and realized...

 Oh my gosh!!! We are going to be doing this again in just a little over a month! 

Isaac, my husband,  will be having the same surgery on June 4th. I know it's the right thing but wow does it feel overwhelming at times.  When I start to feel like this I remind myself of how God has taken such good care of us. I remind myself to put the burden on Him instead of us because He cares so deeply.  I honestly don't remember what I have told you all and what I haven't about this situation.  When we arrived in March to Minnesota for the surgery "evaluation" and 4 days later my husband was headed back on a plane to CO, I was sitting in a hotel room starring out the window thinking how HUGE this situation was. At that point in our journey I thought I was going to be facing this surgery with my daughter alone.

ALONE.

That is such an intense word to me.

ALONE.

 Normally when thinking of that word I would think of it meaning a very dark and loney time. But I was far from ALONE. I remember sitting there and just telling God that this situation felt so enourmous that I couldn't even wrap my brain around it and yet I knew... it was right. I remember so clearly just throwing up my hands and telling Him that He was gonna have to handle this because ALONE in my strength I knew it was impossible. I knew that emotionally I would crumble under the pressure. That day I literally just gave it to Him. Whole heartedly gave it to Him. I spent my days enjoying my daughter and drinking in every happy smile, every elevator dance (yes, we dance in elevators - hee hee), every laugh, every quiet moment because I wasn't sure when I would get to see those beautiful moments again. All I knew was, major life saving/changing surgery = vent, pain, tears and very long time of healing.

I told God everyday that I knew that He could do the impossible. He could give us better than the best case scenario! That week in prayer my mother in law felt like God told her that Tasia's recovery would be REMARKABLE (that's a whole other post i still have to write). She wrote me an email and told me this and even included the definiton of remarkable. I told Tasia this and we prepared our hearts for the possibility of something better than expected. We had nothing really in mind because sometimes I think making a plan in our heads just puts God in a box.  I knew the power of God was going to be at work. I knew that I could count Him faithful to fulfill His word. I stood on that.

Looking back it's amazing to see how we were anything but ALONE. Not only did He orchestrate everything so that my husband and mother in law could be there for the days surrounding surgery but He brought me all of YOU, dear readers! YOU have given me strength too! From emails, letters, texts, calls, FB messages, packages and prayers. I have never felt such love and support in my entire life!  And even if we would have walked into that surgery without our family or all of you supporting us, Tasia and I would not have walked into it ALONE.

We walked in as daughters of the most high God.

We walked in with the angels of Heaven surrounding us.

 We walked in with the Prince Of Peace.

There is no such thing as ALONE in this world unless you choose to be ALONE.

As you all know by now, God was most present in our time of need. He never left us. He never will.

So as we make our way closer towards the next surgery date. I am reminded that we will not be going into this

ALONE.

And with that I am comforted.

XOXO,

Jillian

Courage

 If I could encourage you all to do something it would be to have courage.

  Don't let your path be deflected by fear of the unknown. My grandpa used to say that being in fear is like paying interest on something you may never own.

 Be still and wait on the Lord for the answers you are looking for in life.

But don't ever be thrown off your course by something like fear.

I think this just about sums it up from me tonight.

XOXO,

Jillian

The Surgery Video

I'm sure most of you have seen this already but for those of you who are not friends with me on Facebook... check this video out that my husband made of Tasia's surgery.

If you haven't seen it yet, be forwarned that it brings the tears.

-Click the picture below-

 

I'll take it...

I will take what I can get when it comes to time with my boys while I am so far away from home.

XOXO,

Jillian

Well...

Well they can't all be amazing right? Today was a rough one. Probably one of the roughest Tasia has had since getting out of the hospital.  And I guess if this is as rough as she has had it then we count ourselves blessed! Got to keep it in perspective, ya know?

She woke up very nauseus and having pain. She hasn't had pain in over a week unless she's done too much.  So this confused me.  Where this pain and nausea came from, I have no clue. But it stayed all day long. The pain meds barely took the edge off and nothing helped the nausea.  They say when you go through this surgery you will have good days and bad ones. Well this was a bad one I guess but thankfully now at 6:30pm it is getting better.

We visited the pain management clinic today again and the appointment went very much like the last one.  Tasia was feeling yucky so much ahead of time that she passed out in my arms by the time the doctor arrived.  She was literally so sound asleep that he couldn't even get her to respond much.  I'm sure she looked terribly drugged but she wasn't at all. She was exhausted! I swore to him that usually she is feeling great and I don't know where this came from.  I'm sure he read the rest of her doctors comments in her file about her feeling soooo well and thought, "Yeeeaaah, sure she is."  Ha ha ha! He's a great doc though and I'm happy we are getting to work with him.  He is currently watching Tasia for having migrain headaches and seeing if possibly that is causing the nausea and extreme sleepiness.  He said we will continue to watch it.  Today was supposed to be our last appointment with him but I think he was pretty concerned she was feeling so yucky today so we are going to see him once more next week before returning home.  I hope and pray that Tasia is feeling good and he gets to see her happy little personality before we leave.  Dr. B, her endo, gets to see her bouncing off the walls at those appointments. 

On a very happy note, they dropped her 1x a day insulin again and now to only 2UNITS today!!! Even Dr. B said she can't believe she's down to hardly any only 3.5 weeks out. So there's my note to smile on today!

~Feeling good enough tonight for a little photoshoot~



Now today is almost over. I am praying for a blessed night of rest so that she wakes up refreshed, renewed without pain and nausea again.  I pray for wisdom to know what to do better for her and for peace to know I am doing my best.

XOXO,

Jillian

Mountain Tops and Valleys

I find that so many people tell me how they don't understand why bad things happen to some people. Why do some people go through illness or loss of a loved one and yet others seem to live that perfect all amercian dream?  I won't lie, there was a moment in time after Tasia was diagnosed that I was angry asking why? Telling God that this wasn't what I had planned. I told him that I couldn't stand by and watch my child suffer or live in fear that I may be a widow in my twentys. There was the moment when I realized that I was one of those "hospital mom's" and that my life would likely be spent in fear of "what if".

But I got to the point when I had to shake all of that off. Quit crying about what was and focus on what could be. I had to realize that I was given a gift to walk the most beautiful people in my life through the hardest journey and the biggest valley of their lives. And not just walk with them and beside them but help them climb out of it.

 For 13 years I have researched and prayed my way to an answer for my family. For 13 years I have kept hope alive in my heart. And Tasia is now through the wilderness and climbing her way to the top. And exactly 14 years (to the day) that Isaac and I met, I get to stand beside him as he steps out into a life where pain does not live as he makes his ascent to the top.

 Yes, there have been very difficult moments throughout the last 13-14 years but I wouldn't trade the valley we have walked through for all the money in the world because I get to stand on the mountain tops with my beautiful husband and children and look where God has brought us to. This is a higher moutain top with a better view than I could have ever dreamed of.  Nothing can compare to this victory in our lives! Yes, we walked and will walk through the valley's of the shadow of death but God is bringing us to a place that can only be seen after crossing through that dark valley. We have to cross into this valley again on June 4th but I know what lies beyond is better than our wildest dreams could imagine.

 I know that He will be with us again through every step of it.

(all image credits via weheartit)

Today I find myself at peace with the valleys so that I can truly appreciate the mountain tops.

XOXO,

Jillian

This post is dedicated my family, Malkie, Kristen, Rachel, Beth, Michelle, Scott, and Whitney who have found themselves in the valley and chosen to climb up and out or are on there way to the top. And to all of the families who find themselves in the valleys and are looking for the path that leads upward. He see's your pain and He will lead you through if you just trust Him.

Art therapy

tonight tasia and i decided to paint. we've painted a ton since being on this journey. i think painting and just art in general is soothing to the soul. i am by no means an artist but i think it's theraputic.

tasia's picture reminds me of the tree we wear around our necks. the tree that is planted by streams of water, bearing fruit each season. the leaves never wither, and they prosper in all they do.

it's a happy tree.

tasia's picture.

my picture is for the little girl that we had dinner with tonight. she is around 6 years old and has cancer. she has only about a tenth of her hair and the hair she has is long. she is here with her daddy. everytime she walks by me she brushes her hands down my arms and smiles. her neck has burns from all of the radiation. my heart is crying out for a blanket of healing power to be released on her little body. my heart aches for what she's been through and what she still has to go through.

but i know that there is hope.

my picture.

XOXO,

Jillian

Three Weeks Post Op

Wow... this week has gone by so fast. I started working remotely from MN since we are now at RMDH and I have some time in my days. It's made this week fly by.  Between catching up on being away from work and Tasia's clinic appointments - we are busy!  Tasia is still doing wonderfully.  We have our hard moments but they are mostly from low blood sugar right now.  Her little islet cells are kicking in and working so well already that we can't drop her insulin quick enough. We left the hospital on twenty some units of the long lasting insulin and we are officially at 3 units as of today and have cut out meal coverage. We've had a hard time keeping her blood sugar above the mid 50's! Her little islet cells are ready to start doing their job and are making us work hard to drop the insulin at the right time.  When Tasia has low blood sugar she gets terrible nauseous and throws up.  It makes her feel awful. It seems like we go through that every couple days. Every time we drop her insulin she does great the next day and then those islets cells jump in and match the work and we have to drop again the next day. No complaints though! She's gonna be off insulin in no time. Praise God!

We  met with the pain team this week and they said if we want to start reducing her pain meds we could but not to go too fast. We tried a bit last night and it made for a rough night with a lot of pain- this is something we are not used to at all as we have kept her pain under control very well. So I think we will keep her pain meds every three hours for a few more days and then spread them to 4 hours apart and see how that goes.  They told me not to be in any rush to get her off the pain meds because there's no reason to up the amount of her pain if we can control it. I totally agree.

We are going to have our last few clinic appointments next week as well as have her G tube removed on Thursday.  We will wait one more week just to be extra safe before returning home the last week of April.  It's such a blessing to have her healthy enough to return home to heal but it's really expensive to be having to travel home and then turn around in three weeks and come back again. But I'm not going to complain  - I am just happy she is well enough to go home for a few weeks. We have to be back by the last week of May for Isaac's surgery.  I can't believe we will be repeating this whole thing again but I am thankful we will have it all behind us soon.  I am praying that Isaac handles it so well like Tasia's body did.  I know that God was 100% behind her great experience. We will continue to put our trust in God because I know that he will never let us down.  We are depending 100% on Him for our strenght right now.  He is so very good and faithful!

-PRAYERS- 

That we can control Tasia's nausea until we reduce her insulin. (Although I can't complain that we are having to drop it so quickly!!)

That she has a peaceful sleep without pain.

That as we reduce her pain meds over the next few weeks that it goes smoothly.

That Isaac's body is strong and healthy before his surgery and that he will have peace that passes understanding over him as he patiently waits for his big day.

XOXO,

Jillian

Dear Tasia

I've started to write this post to you so many times but emotion overtakes me and I've had to stop.  I have thought that if I started crying I might not stop.  Not out of sadness though, out of amazement and joy!  You have inspired me my sweet. You have shown me what it is to be truly brave in the most intense circumstances. You have given me the desire to strive for the greatest accomplishment of my life and achieve it. You have given me reason to hope and to trust God with all my heart.  You have shown bravery that only true heroes are born with.  You, my sweet, are an amazing girl and I wake up every morning and look at you and thank God that He chose me to be your mom.  When you were little and your personality started developing I noticed right away that you were very stubborn - a characteristic you got from me. At first this trait frustrated me as we are both so stubborn that at times we would butt heads.  Secretly I've always loved to see this side of you because it showed just how much you and I are truly alike.  But not until recently did I realize that this was a trait that God gave you for a reason. I realized that being stubborn was what caused you to breath over the top of the vent in ICU because you were determined to "do it yourself". It's what made you walk to the end of the hallway during physical therapy instead of the goal given to you of just half way.  It's what made you beg for a surgery that is considered one of the toughest and most painful you can get... because you were determined to get well. I love that about you!

 I admire you dear one because when you could have chosen to feel sorry for yourself because of suffering pain for almost 9 years -  you chose instead to just be HAPPY!  If there was one word to describe you it would most definitely be HAPPY!  You bring joy into the room where ever you go and brighten every one's day with your smile. 

If you have learned anything from this whole experience I hope it's that God will never leave you - never. He loves you so much and wants the best for you. Trust Him with all your heart and delight yourself in Him and He will give you the desires of your heart. Always remember that He is the one that got you through this and turned your life around. He always causes you to win!

I am so thrilled to see your new pain free life unfold in front of our eyes.  You have a beautiful and bright future ahead of you and I cannot wait to see what plans God has for your future. 

I love you Peaches!!

XOXO,

Mama

BIG NEWS!

So the happy news is.... that the docs are releasing Tasia to finish her recovery in Colorado!! We will be headed back to the mountains in about 1 1/2-2 weeks!  She still has a big recovery road ahead of her but thank God they are letting us do a big portion of that at home! We won't have to be back to MN till June for Isaac's surgery!! (And then this whole thing will begin again for him.) So happy to be seeing my boys sooner than we thought. God is so very good!

So fitting...

This is the sign that is hanging above my bed at RMDH. Isn't this just so appropriate? I felt like God was winking at me with this one!

Ever since this whole journey began "HOPE" has been my montra. 

I love it. I love HOPE! There is always HOPE!

When this is all over I want a necklace that just simply says...

HOPE

XOXO,

Jillian

To Celebrate!

Since Tasia woke up from surgery she has been BEGGING for a

 RoOtBeeR FLoAt!
of all things... a rootbeer float!

 

She went from this 2.5 weeks ago

I couldn't show you all this pic until today and today Tasia wanted to show the world what she went through....

to this today

I think this is reason to celebrate!!!

Don't you?

Happy Day!

We are drinking rootbeer floats and watching

 Mr. Magorium's Wonder Emporium and Willy Wonka

Happiness!!!

Just more proof that God is so very good!

XOXO,

Jillian and Tasia

You are complete...

For you were buried with Christ when you were baptized. And with him you were raised to new life because you trusted the mighty power of God, who raised Christ from the dead.

You were dead because of your sins and because your sinful nature was not yet cut away. Then God made you alive with Christ, for he forgave all our sins. He canceled the record of the charges against us and took it away by nailing it to the cross. (Colossians 2:12-14 NLT)

I am completely overtaken by the love of Christ!

Thank You Jesus!

Happy Day!

Happy Resurrection Day!

Because He lives we have salvation, freedom and healing in His name!

Thank you Jesus, I can never begin to thank you for all that You have done for us.

You know my heart sings for Your love!

Here we are...

Well believe it or not we made it to Ronald McDonald House last night! We arrived out of breath and overwhelmed but we made it! What a big feeling of heavy responsibility to have a table full of very important meds that have to be given at the right time in the right way as well as blood sugar testing and insulin. To say the least I considered turning back to the hospital. Just kidding. The feeling was one of freedom! Not sure how much I told you all about the feeding tube/drain drama but where it all got left was Dr C wanted her to have a feeding tube for another 3-4 days. I made my peace with the fact we were to continue a little more tube feeding as the original plan was 2-3 months worth of it. I prayed that night that God would lead the docs in what to do when her tube/drain got changed (even if they didn't understand themselves why they were doing it). The next day she went in for the procedure and came out with different than the doc asked - she only had a tiny button that can open into a drain if need be. I was stunned... It wasn't what the doc asked for. I inquired into the orders and it in fact said feeding tube too!! But it wasn't there! I told the IR team of the mistake but told them to leave "as is" until I had word from the surgeon that it "had" to be done again. Long story short the next day he came in and said, "Well it must have been providence for her to not end up with the feeding tube because I did in fact order one. But not to worry she is obviously ready to fly and we can stop tube feeding!"
I said under my breath, thank providence my foot, thank God! He knew and orchestrated the whole thing!

We are now at RMDH without tubes to worry about and that is so liberating! After we got all the meds organized and set all my iPhone alerts we had our first real meal. It's so different to be counting carbs and giving insulin coverage but it's only temporary. In fact, they dropped her long acting insulin another two units this morning! We are on our way!!

Today was are just relaxing, doing laundry, making greeting cards and watching movies. Just needing some mama and Ta' time. You know, without a medical team watching us breath ;)

What's next? Well, she has clinic appointments all through out the week until mid/end of June. After that, Dad should be done with surgery and recovering well to where me and the kids will come back home. That seems forever away but it's all just a moment in time. I am thankful that I have been given the opportunity to help my husband and child get past this ugly giant. God made it all possible and has given us the desire of our hearts!

-Prayers-
That Tasia will continue to eat well and not lose any weight. (So far so good)

That her digestion process will do what it needs to do - start to finish.

That she will continue to dodge some of the normal digestion pain and side effects of new re-routed belly. (So far she's only had some nausea this morning and that could have been cuz she took her meds before eating instead of after.)

That her recovery will continue to move along at a good rate and meds will be less and less.

That May 10th will come really fast! (When our boys join us!)

Thanks again for all your prayers! We love you all and will continue to keep you updated on our MN saga.

XOXO,
Jillian

2 weeks Post OP

Wow! How are we already 2 weeks Post OP?! Time has flown by! Tasia's procedure today went smoothly for the most part. It took an hour and half and she came out with less than we were expecting.  They were told to do a feed/drain and she just came out with a drain.  I'm not gonna complain one bit though because I prayed that the docs would be led by God to do what was best for Tasia and somehow wires got crossed and she came out with only a drain. You may say coincidence... but not me.

We gave her an extra dose of her pain meds and she had no pain following the procedure.  They are currently stepping down her insulin as well.  I would really love this to happen as quickly as possible because I hate giving her insulin shots.  I have a very big aversion to needles so it's been a real opportunity to crucify my flesh and just do it. But if she can take the shot, I can give it. But I want it to be done! At least get to 1-2x a day instead of all the correction and meal coverage. This is my opportunity to exercise some patience.

(The view from Tasia's hospital room)

-PRAYERS-

That Tasia would tolerate the last few feeds through this g-tube without discomfort. (She will be done with feeds completely by this weekend.)

That her insulin gets under control so well that we have to start dropping the amount of insulin and number of injections.  (To transition off of insulin can take up to 6 months but I am excited to see how well this moves along for Ta'.)

That her pain will stay under control.

That when they discharge us to RMDH that we make a smooth and easy transition from hospital care to 100% Mama-Care.

For a peaceful and restful nights sleep.

Thanks be unto God who ALWAYS causes us to triumph through Christ Jesus!

XOXO,

Jillian

Also and update on her little friend Ella - her surgery went great! They got so many islet cells they had to inject them lots of places besides her liver. Go ELLA!  Please continue to pray for strength for her and her parents and that God does a mighty work to shock the medical industry in Ella too!

In procedure currently...

Love from the Father has rescued and protected our hearts during these hard times. I know He is guarding Tasia and my heart and emotions. A child should never have to go through such hard things but He gives us strength. I'd take all this hard stuff a million times over to spare my baby girl. She's my hero! I will never be able to put into words how proud I am of you Tasia. You are so beautiful inside and out and Jesus and your angels are with you when mommy can't be. Love you angel!

Quick Update

Change in plans - they are not removing the feeds altogether. But they are removing the big feeding tube\drain and placing a very tiny one and then gonna reduce her feeds by 25% till she's off. The surgeon has a bad feeling about stopping cold turkey as he thought that could backfire and cause us to take 4 steps back. So we are on going to step her down from the feeds, but at a good rate. It's a compromise so I can't complain. Plus she had a big flare in pain last night and we might have to up her meds. I think this is the right thing. I can't pray for wisdom for the docs and then be upset if it wasn't exactly what I hoped it would be. So I have to believe that this is what God guided them to decide and I'm gonna be happy about it because again its still abnormal and a huge step in the right direction. Normally they wouldn't give this tiny tube until the big one has been in for 4 weeks. So it's a good thing!

On a harder note she had a lot of pain last night for the first time in almost a week. Not sure if it's what she ate or how much she ate but I am going to talk to the pain team this morning to try and get her some relief again. Please pray that her stomach empties and the natural digestion process happens as its should. Please also pray that we regain pain control quickly. Over all she is still doing very good but as I've said before this is a very hard surgery and a big recovery process too.

She goes in to be sedated at 3pm so please pray that all goes well and these tubes are placed correctly and they accomplish what they are meant to do.

Last night was rough - lots of tears for both of us, lots of reading the word to keep myself and her at peace and lots of time just meditating in the presence of God. He helped us trough and today is a new day.

Thanks be unto God who always causes is to triumph!

XOXO,
Jillian

SUPER BIG UPDATE

This morning during rounds the docs began discussing having Ta' go this afternoon for the GJ tube (feeding tube and drain) to be removed and replaced due to the intense amount of leakage. I had been praying all morning for God to open their hearts with wisdom to know exactly what was right for Tasia. To treat her and not just "follow the protocol" which is to leave the GJ tube for appox 2 months.

During their conversation I asked, since she's eating so much and not having any trouble, why do we actually need a feeding tube? And I've been clamping off her drain for hours at a time and she has no discomfort, so why do we need a drain? 

Their eyes got very big and one spoke up and said, "Wow, Tasia needs to be our poster child for this surgery! Sounds like she's already ready to fly!"

They decided to put off the GJ change until tomorrow and let her eat normally today, count calories to make sure she's getting enough nutrition and clamp the drain for hours at a time. If all goes as well as it has been going....

THEY ARE REMOVING THE GJ TUBE ALL TOGETHER! 
1  1/2 months early!!!!

They've never done this before... this is not the norm. But remember, our God is not the norm...

All glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think! (Eph 3:20)

That's my God!

Thank you Lord for wisdom. We still have her surgeon to agree to this and he was already sort of open to it yesterday but he is currently doing this surgery on our little friend Ella so we won't have the final say till tomorrow. 

-PRAYERS-

Please pray that today goes amazingly well with eating and clamping the drain.

Please pray for wisdom for her docs to know what is right for her instead of just following protocol.

Please pray for Ella (4) having this surgery as I type. Her family reminds me so much of ours and they need prayer as well.

Thank you all for your thoughts, cards, prayers etc.

and most of all

Thanks Be Unto God Who Always Causes Us To Triumph in Christ Jesus!

XOXO,

Jillian

Happy Anniversary my love...

Happy Anniversary to the man who has made my life magic! I can't imagine feeling any more loved, cherished or adored than you make me feel. You are an amazing man and I am so lucky to have you babe. Big hugs and kisses from Minnesota! I know that we will have many more beautiful anniversaries to share together and I can't think of a better way to celebrate our love than to give our beautiful daughter the best chance at a happy life. That is just a part of our love - so it's fitting. We've been working almost our entire marriage to beat pancreatitis and  like you said, "together we can do anything".

 Well guess what.....? 

We did it!

LET'S CELEBRATE!!!

Update

They have decided to not go to the OR tonight to adjust/change the GJ tube. They deflated the balloon holding it in place and are going to wait and see if that does the trick to stop the drainage. If it does we will leave well enough alone. If it doesn't not they will go to the OR for sedation and fix it. Please pray that God takes care of this as even though it's not another surgery it would be painful and require more sedation.

XOXO,
Jillian

Post OP Day 12

Tasia's GJ tube (feeding and drain) have been leaking terribly. This means she is not getting all her food or meds. Not good. Today they decided to do an X-ray to see what was wrong with it.  Talk about a traumatic event!  They said X-ray but that was the least of it. The doc doing the xray found that the GJ tube was too far in her gut blocking the duodenum and that it needed to be pulled out a ways.  Tasia can't even tolerate having this tubed touched and he decided to hold her down and pull it out.... he pulled and pulled, she screamed and screamed and I cried for him to stop. When he finally did - he told me that the tube was stitched in!

OH MY GOSH!  It took me 20 minutes to calm her down and stop her crying. What a traumatic event.  I told them they cannot touch it without putting her under. They are taking her to the OR later this afternoon to move the GJ tube out further and stop the leaking. She will be totally asleep and trauma will be avoided.  A friend of mine (with a little girl up her on ped's that is having the same surgery tomorrow)  had the brilliant idea of removing the staples while she is under to save her the trauma.  The surgeon said he wanted them out today anyways.... so brilliant!

In the midst of all of that we got a visit from Beth and her kiddos.  Beth's daughter El, had the surgery a few years back and they stopped by to say hello.  They brought happiness with them!  It was just what Tasia needed to get her mind off of the trauma she had just suffered. El and her had a great time hanging out together.

I also met a sweet family from Arkansas who's 4 year old is having the surgery tomorrow.  We've been able to talk and share our stories. I hope that seeing Tasia they are able to have some peace about the surgery. Please say a prayer for Ella and her parents tomorrow as we know how tough it is to go through all this.  We serve a BIG God and I know He will see them through too.

-PRAYERS-

That the surgeon is able to adjust (or remove) Tasia's GJ tube just perfectly so that it serves her just perfectly.

That she is not traumatized by this event and the peace that passes all understanding washes over us.

That the staples come out well.

That pain stays under control.

-PRAISE-

If all goes as planned... they plan to release Ta' from the hospital on Thursday or Friday!  This is 3 weeks early!!! We will still have to stay at the RMDH but that is just plain HAPPY NEWS!

Post OP Day 9

Today was another beautiful day. Tasia did so well with physical and occupational therapy that they graduated her 3 days early and now she doesn't have to do them anymore.  She also ate a full plate of penne pasta with red and white sauce for dinner and it set beautifully.   Again, this is absolutly remarkable to be eating this soon after surgery and it also setting well!  God's getting the glory here! Her blood sugar was low 2x today and she had to drink a pop once and eat icecream another time to bring it up. She wasn't complaining! I'm sure we'll be lowering her insulin tomorrow since her body is working so well.  So did you catch all that?  Pasta, pop and icecream! This mama is happy dancing!

Tasia was also able to sit on my lap for the first time today. This was something she was looking so forward to and it was super special snuggle time.

We also got 2 happy visits today from our Minneapolis friends Rachel and Kristen. It was great to see both of them and I'm so glad to have great friends close! And of course they spoiled Tasia :)

We also got that room I was praying for! The ADOPT-A-ROOM.  It's amazing!  It has 3 flat screen tvs, one that is a 52 inch, a Wii, a bedside touch screen computer, a reg computer, color changing mood lights, a huge picture window with the skyscrapers of downtown right out our window. And the best part of all is that we have a mac daddy webcam to chat with the boys on the big screen... it will almost be like having them here!  I asked God for this but told him it was a want and not a need, so I would totally "get it" if it didn't happen.  But today the charge nurse came and said to me, "This is against our rules, but how would you like to move to an ADOPT-A-ROOM!?! More than enough... that's all I have to say 'bout that!

We also found out that one of Tasia's doctors (the one the got her pain under control) is a spirit filled Christian! After she saw our church website on the big screen in Tasia's room she said that she's wanted to tell me since we've gotten here that there is no doubt that God's healing is all over Tasia and that is the reason she is doing so good! She said she's had other kids have this same surgery with way more pain and long recovery and with Tasia that is not the case! A higher power is most definitely at work and she said her job was only a tiny part of the big picture. Thank you Jesus!!! This beautiful doctor goes to Mac Hammonds church. Lol! Small world and BIG GOD!!!

We are happy girls!!  Tomorrow we get to have another lovely visit from the Stecklers (another family that has gone through this with one child and will be going through it again for their son). It will be wonderful to meet the amazing Beth face to face. I will hug her for all of you cranky panks out there.

I am also meeting with a family who's 4 year old is going through this surgery this week. They are scared and have a ton of questions. I am happy to be a comfort to them through this and let Tasia be a testiment of how good it can be.

Thanks for all your continued prayers. Although we are through the roughest spot for Tasia, there is still a lot of healing going on.

-Prayer Requests-

That her GJ tube quits leaking so much, as it's leaking stomach acid and burning her tender skin.

That the "popping feeling" in her ribs goes away.

That her body continues to flourish and thrive with every meal she eats.

That her stomach would empty at the proper time God intended it to.  (This is frequently a slow process after this surgery - but it's not too big for God.)

That my boys are comforted while we are apart. We've got about another month and a half and then Isaac is going to move them out here to stay with us at RMDH until we come home to CO. I can't wait to kiss their faces!

-FUNNY THING OF THE DAY -

Tasia is currently plotting (with her favorite nurse Brittney) to play an April fools prank on her favorite night nurse Andrew.  They are mixing up a fake vomit with pudding and applesauce and other nasty and she is gonna surprise Andrew with it tonight.  Needless to say, she's having a pretty good time!

Nighty Night dear readers.  Your prayers for sweet sleep are working as I woke up to our GI doc starring down at me asking if I was gonna come to rounds. I almost screamed! But instead I jumped up and ran to rounds in my jammie pants. Hey they aren't much different than scrubs, right?

XOXO,

Jillian

PS. CLICK HERE to see the video of week one that Isaac made. Bring plenty of kleenex...