Sunday, May 25, 2014

The Bigger Plan

Well, Ava got home today around 10:30am.  I can't tell you how great it feels to have her home and for our family to all be under one roof again.  As I think about the last week and a half lots of questions stream through my mind but ultimately I know God has a bigger plan for everything and we don't always understand things at the time....

Why did Ava have to throw up 8-10 times a day and become extremely dehydrated?
Why did we as parents have to go through the stress, sleepless nights, worry, and patience-testing?
Why did Ava have to go through this surgery?
Why did our family have to miss our trip back to Illinois to see extended family that we only make two times a year?
Why couldn't it have been a little stomach bug that only lasted 24-48 hours?
Why didn't the first doctor in the ER catch this?
Why did we have to spend a week in the hospital?
And on and on and on...

I don't come to these questions because I think it is unfair or to think "poor us."  I come to these questions because I know that God has a bigger, better plan that I won't know fully until I enter those pearly gates of heaven.  Until then I try to see the good that comes out of his plan as best as I can.

Was this His plan because...

...He wanted me to see again that God is our protector?
...He wanted our family to have opportunities to reveal our faith to others?
...He knew this was the week Zack and I had off before teaching our summer courses so we wouldn't have to juggle too much?
...He wanted to reunite one of our visitors with someone she had recently been thinking about while visiting Children's Mercy?
...He wanted us to give attention to a little girl across the hallway from Ava's room who rarely had loving visitors?
...He wanted to give me the opportunity to spend a little more time with a mama who's baby girl is in the NICU at Children's Mercy who is going home with a trach on a ventilator very similar to Ava?
...He wanted us to go to Illinois a different time?
...He wanted to remind us what wonderful friends and family we have?
...He wanted to reveal again what special angels we have as daughters?
...He wanted to confirm that I have the best husband in the world?

I know that I don't know the bigger plan for everything and I'm okay with that.  In fact, it gives me peace to know that I don't have to know all the details.  I can just rest assured that God has a plan and it is for good.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Saturday, May 24, 2014

Bring on the Food

Today Ava was allowed to have solid food.  They didn't put any restriction on her but just allowed her to eat as she wished.  Her TPN was completed for the day and then discontinued.  Here's how it went down...

Breakfast...first meal in 9 days...eggs, sausage, toast, applesauce, and milk...ate all but two bites of toast!

Lunch...chicken nuggets, mac and cheese, green beans, and strawberries.  Didn't pig out as much as breakfast but did well.

Dinner...tortilla with refried beans, steamed carrots, and blueberries...that was after an afternoon snack of goldfish.

There is a good chance we could go home tomorrow so hopefully we aren't disappointed.  However, we want to do what is best for Ava so if we need to be patient a little longer we can be.

And Pappy made it to KC this morning too!!!

Friday, May 23, 2014

Headed in the Right Direction

Well, today has been a good day.  It started off with a little poop, followed with the removal of the NG tube, and has included water, popsicle and chicken broth!  It's nice that she's at least getting something oral now...for her sake and for our sake.  Not only is it tough to tell her no but it's really hard to remember to spell everything that has to do with food or eating when conversing in her room so she doesn't start to think about it.  She also had some more visitors and Nana came to town.  She is still getting TPN but we are hoping for some solid food tomorrow and possibly lose the TPN soon.

Thursday, May 22, 2014

Keep the Entertainment Coming

Today was another day of "giving it time."  The only difference that was made is this afternoon she started getting TPN which is basically further IV nutrition since all she was getting was IV fluid and ice.  We are still waiting for Ava to poop and show that her intestines are ready.  At this point they don't want to pull out her NG tube in case her digestive system isn't ready which also means no liquids or food.  In saying that, we are doing our best to keep the entertainment coming.  Movies, walks around the unit, reading books, coloring, putting stickers on paper, playing with stuffed animals, checking out the play room on the unit, riding around the unit on riding toys, playing with sissy, eating ice, Disney Jr., looking at pictures on everyone's phone, and as you see below, playing with Talking Tom Cat (iPhone app) on Larry's phone.  Let's hope for a more eventful day tomorrow!

If you listen closely you can hear Ava's contagious laugh!

Wednesday, May 21, 2014

Being Patient

Today was pretty uneventful.  Ava is showing more of her true colors and we are loving it.  Seeing her smile is priceless.  Unfortunately she didn't get any liquids today but maybe tomorrow.  There is a possibility that they may take out the NG (feeding) tube which is placed through her nose tomorrow too but they may decide to wait one more day.  Without being too graphic we are really hoping for some poop soon.  They can hear some bowel sounds when they listen to her abdomen but no movement yet.  Prayers are always appreciated!

Here are some pictures from today...

Getting ready for her nap with all her presents.  More today...a kitty from Larry and a dolly from the Bonners!

Tuesday, May 20, 2014

Highlight of the Day...Ice Chips!

Since lunch last Thursday Ava has eaten one oyster cracker and two bites of applesauce.  She has not even wanted to be offered food but one thing she has been asking for non-stop is water.  Unfortunately, she has not been able to have any fluids or food (other than her IV) since the surgery.  Her poor little tongue, pasty white and chapped lips to the extreme.  However, today she was approved to have ice chips!!!  The downside is Ava wanted ice chips continuously and we had to limit them to 1 oz. every two hours.

Other than that, today has been a pretty good day.  She has been very alert and more herself.  She has been urinating and walking around.  She even pointed at chips laying in her room and said she wanted them.  Something we haven't heard in a while.  Then while looking at pictures on mommy's phone she said a picture of herself and Reese eating at IHOP.  She said, "I want to go to IHOP and eat pancakes and eggs."  So great to hear other than the fact it could be two days before they allow her to have food...we'll see.  She has some pain in her belly due to the fact her intestines have been heavily handled but she is weathering it well.

Here are some pictures now that I'm writing this post on a laptop instead of an iPad....I'll keep the updates coming as best as possible.  Let's hope tomorrow is a big day...maybe removal of the NG tube and possibly oral fluids???  Time will tell.

The beginning of this all...

Friday...her common position Thursday night, Friday, and Saturday...horizontal with her shirt up.

 Saturday trying to give her some fresh air...eyes already dark and color fading.
Grammy holds Ava post-surgery...loves to have her blankie over or on her face.

Today, one day after surgery.

Hanging out with the new elephant Nana and Pappy sent!

A new book and magnadoodle...Thanks Southards!

Awesome animal books from our friends the Ahrings and Kluttzs!  She also got beautiful flowers from the Proctors!  Ava could handle this aspect of hospital stays anytime!

This is actually her grinning after she learned she could have ice chips!
Ice chips..."More please."  "More please."
Up and moving!!!!

And in case you were wondering...we are attempting to give Reese plenty of attention too!

On the playground outside Children's Mercy.

At IHOP with Grammy and Larry having pancakes and eggs!  If only sissy knew...

Monday, May 19, 2014

Ava Update

First of all, thank you to everyone who has texted, emailed, said a prayer or sent warm thoughts our way.  After continued vomiting and exhaustion last night, Ava went into surgery this morning around 7:30am and they used a scope with a camera to check out her intestines.  They were very distended due to blockage and the doctor wanted to see exactly what was going on.  He went in with the possibility of needing to remove part of the intestines if there was dead tissue due to the blockage as well.  What he found was a lot of scar tissue in the intestines causing this blockage but no dead tissue.  The scar tissue is from Ava's previous G-tube (feeding tube) surgery and has continued to form in the small belly of hers over time.  Anyone who has undergone a surgery is at risk for the formation of scar tissue and in Ava's case she had quite a bit.  In the few hours they removed a lot of this tissue throughout her intestines going through from end to end three times.  They said that this tissue could reform causing blockage in another couple years, in 20 years, or never.  The good news now is that we know what to do if she ever has similar symptoms.  So from here Ava has a temporary feeding tube in her nose and is getting IV fluids.  She won't vomit with the feeding tube placed and slowly her intestines will "wake up." The doctor said this process can take a few days or until the end of the week and our goal is to have her going to the bathroom on her own and taking all food and drink on her own.  Until then we will make her as happy and as comfortable as possible and thank God for her start on this road to recovery.  Continued prayers would be wonderful and thank you so much for all your love and support.

Sunday, May 18, 2014

Please Pray

For those of you who check this often or who get notifications that I've made a new post, I'm asking you all for prayers...

On Thursday, just three short days ago, Ava complained her belly ached and began getting sick.  Without a fever or any other symptoms she continued to vomit and not eat for three days.  We assumed it was a stomach bug, that the virus would run it's course and she'd be on the mend soon.  However, after three days of this she became very dehydrated, lethargic, and continued to complain that her belly hurt.  Yesterday we took her to the ER at Olathe Medical Center and after doing a quick physical check they subscribed Zofran, a drug to help prevent her from vomiting, and sent her home.  However, after about 5 hours at home she was still vomiting and very uncomfortable.  We called back to the ER and they told us to come back in.  This time they took labs, gave IV fluids, and took an x-ray of her abdomen.  The doctor believed that if we pumped her full of fluids she would become hydrated again and start to turn the corner.  However, between 4:00pm and 10:30pm she continued to vomit and the fluids (over 750 cc) were making little improvement.  When Ava finally urinated, the doctor realized from the urinalysis that she was even more dehydrated than they believed she was so he ordered for more fluids and continued to look over things.  After reviewing her x-ray again, he noticed that there may be a blockage in her small intestines.  A CT scan in the last few hours confirmed that it appears to be scar tissue causing the blockage and she is currently on her way to Children's Mercy Hospital downtown.

I lay in bed at home with Reese down the hall sound asleep, while Zack is en route with Ava to CMH.  Questions circle my mind about the procedure they will perform, the ability for Ava to bounce back, the recovery process, etc., waiting to hear from Zack on what they will do.  All of this has been a humbling experience to be reminded how little control I have as a mom in the grand scheme of things but how I have to trust that God will prevail.  As soon as Reese wakes up we will head to the hospital but all I can do for now is ask for prayers and pray myself, that Ava can be comfortable again, have energy return to her body, and that the medical team can have the wisdom and care they need to get Ava back to the girl we know.  I will make sure to keep you updated but in the meantime, please pray.

Friday, May 9, 2014

March for Babies and Great Wolf Lodge

Last Sunday was the Kansas City March for Babies.  It was held in the Power and Light District and it was a beautiful day.  We got to see some familiar faces who helped take care of the girls at Overland Park Regional Medical Center and that is always great!

Then yesterday evening we had the opportunity to go to Great Wolf Lodge's water park.  Big Brothers, Big Sisters of KC partnered with Great Wolf Lodge and offered some days in which people could come to the water park without having to stay over night which is never allowed otherwise.  At a great price you could buy tickets and 100% of the proceeds went back to Big Brothers, Big Sisters.  As you can see from the pictures our great friends the Ahrings came too so Ava, Reese, and Nolan had a blast!  After two and a half hours of water excitement the mommies and daddies decided we needed to pull our little ones out of the water!

Friday, May 2, 2014

Nana and Pappy Visit

Although you won't find any pictures of Nana and Pappy in this post, they did indeed visit.  We just need to occasionally get a different photographer when they come visit so Nana isn't always taking pictures but can be in the pictures every once in a while along with Pappy!

While they were here Ava and Reese got to dress up in their new dress-up dresses that Nana got them, they had plenty of trike-riding time, we got to go to the Aviation Show at the Johnson County Airport and play at the park.  Mommy and daddy got to enjoy a date night with two other couples which meant that Ava and Reese got some play time with their buddy Nolan so his mommy and daddy could go too!  What fun!

Nana and Pappy's visit had to come to an end but don't worry, we are still staying busy.  These girls are always up to something...

Like playing at the Rainbow Swing Sets indoor "showroom" on a cold and rainy day (with their buddy Nolan again)...

And watching an occasional episode of Doc McStuffins or Mickey Mouse Clubhouse...