Tomorrow

In less than 24 hours, Natalie will be in surgery.  I have so many emotions, but for now I plan on not thinking about it too much. 

 

Larry is on  his way to Dallas now, so please pray for his safety in driving and for Carter, who is now in Amarillo playing with my cousin. Maybe we should pray for my cousin, Amy too.  Carter is having fun at camp "Mimi" (aka. Amy) right now.

 

We have had a wonderful weekend despite Monday.  We spent the weekend with my brother, sister in law, niece and nephew.  Natalie has had a blast with them!

 

Natalie and Kate playing the ipad

Natalie found Uncle Sterk's eye glass

Natalie eating donuts in her Minnie dress
Thank you Jackson Family again for the Minnie dress

Please pray for a restful sleep for all of us tonight as we prepare for tomorrow morning.  I will update tomorrow after Natalie is taken back to surgery.  I will do my best to keep you all updated throughout the process as well.  We will be updated from the O.R. every hour or so on Natalie's condition, so I will update you then as well.  Please know, sometime the wi-fi at the hospital can be funny, so I may have trouble updating sometimes, but will do my best.

 

Thank you all again for all the prayers and support!  We are so grateful for all of you and your constant prayers for our miracle girl.

Natalie's Pre-Opt Appointment

Natalie had her pre-opt appointment today.  When we got the paper work, they said to be prepared to be there for 6 to 8 hours, I thought that was a little extreme, but 8 hours later, we were finally in the car leaving Children's for the day.

 

Natalie had the "works" done today.  She had an EKG, echo, lab work, xray and urine sample, twice.  Our morning started out smoothly for the first 30 minutes.  Her oxygen was 80, which is actually a little low for her in Dallas.  Dallas is a little lower elevation, so she normally runs a little higher than Amarillo.

 

She also got swapped for staph, which was negative by the way.  She got the bag again for urine sample, which she hated and cried off and on for the hour she had it on.  I told her that is why she needs to learn to use the potty, but that is to come is the upcoming future after surgery.

 

We did have a few surprises off and on with the fire alarm.  Children's is doing  a lot of construction still so I am sure someone hit something that they did not need to, but a flashing light off and on for 30 minutes at a time gets old.

 

She then, had her echo.  She did great during the echo, just kind of laid there and chilled. After echo, we met with Dr. Forbess to discuss her surgery. 

 

Natalie is first case on Monday morning.  Larry, Natalie  and I have to be at the hospital around 6am.  She will be taken from us around 7:30 am.  The first part of surgery is getting ivs in, her breathing tube in, etc.  The surgery will take around 4 to 6 hours, all depends on the scar tissue she currently has. 

 

She will be having the fontan operation with pulmonary valvectomy and main pulmonary artery division.  No, we were not aware of the pulmonary valvectomy and main pulmonary artery division.  Dr. Forbess said he does this when she is on bypass and it will help her in the future avoid blot clots in the pulmonary artery.   Forbess said it will look all clean and tie together nicely, he is a perfectionist...we love that about him!

 

Natalie enjoying a ring pop while waiting on Dr. Forbess

After we met with Dr. Forbess, we went for xray and lab work.  After we got back upstairs to visit with Dr. Forbess PA, JoAnne.  We found out, Natalie's urine sample was not looking good.  They wanted to do another one and this time, we decided to just cath her to get the urine quickly and figure out what our next step was.  At this time, we were not sure if we would have to post pone surgery a month or not. 

 

Natalie's urine came back positive for a UTI.  However, Dr. Forbess said we go could head with the surgery, but Natalie is on a high dosage of medication this weekend.  

 

After what felt like a marathon of a day, we still had some more information before leaving.  We continued to discuss everything with JoAnne and met with a few more people before getting the okay that we were done for the day, but not before stopping by the pharmacy for our antibiotic.  



Princess Natalie! 
She got a special surprise after her urine cath, not to mention the massive amounts of stickers she got over the entire day

We thank you all for the prayers for our safe travel to Dallas and for a good pre-opt appointment.  Overall our day was good, just long and emotionally draining.  Please pray for Natalie's UTI to start clearing up and for Larry and Carter to have a good father/son time this weekend before Larry heads to Dallas on Sunday.

Healing Helpers

Natalie checking Minnie's vitals

Carter and Natalie giving Minnie a check up before surgery

I found the most amazing organization, Healing Helpers.  They make companions for children who have been through difficult circumstances. Their mission...

 

"The mission of "Healing Helpers" is to provide a means of comfort for individuals as they cope with medical situation.  Our "Healing Helpers" physically relate with the person who adopts them, with a zipper pouch in the place of a scar and a mended heart representing their own.  It is our desire to provide a service that brings hope and happiness to individuals and families that live with difficult medical circumstances."

 

The couple who founded Healing Helpers also has a daughter with a congenital heart defect.  They know exactly how it feels to be in my shoes.

 

I discovered this organization about a week ago.  I was super lucky to have just received a new Minnie Mouse from a friend of mine from high school (Thanks Jackson Family).  I quickly contacting the couple, who were both amazing! 

 

Last week, Natalie and Carter gave Minnie a good check and prepared her for surgery.  Minnie then, "Zip-Flight" to Oregon, where where she will also undergo Heart Surgery like Natalie.  The pictures I have seen are too cute!  You tell them where you want the zipper placed and what you want in it, such as a mended heart, lung, bone.  Of course, Minnie's zipper with be up and down on her chest like Natalie's and will have a mended  heart inside.

 

I will for sure post pictures once Minnie gets out of surgery and by Natalie's side again.  Check out the website, it is super cute and such a wonderful idea...

www.healinghelpers147.com

 

Psalm 147:3

"He heals the brokenhearted and binds up their wounds"

One Week Away

A week from right now, my baby girl will be in the operating room having her 4th open heart surgery.  To say I am okay would be a lie, I am absolutely terrifed right now.  I know it is the right time for this surgery and that God is in control and will be with her the whole time, but as a mom, it is just heart breaking knowing what she is about to go through. 

 

I was lying in bed last night thinking; the first surgery, we were just innocent.  We just did not fully grasp what was going on.  The second surgery, we were still nieve, but there were no other options at the time and we were desperate.  The third surgery, was a bit more difficult as Natalie was now 8 months old.  However, this surgery is a whole new ball game.  Natalie is 3 years old, she is talking walking and loving on all of us. Out of the blue at least 10 times a day, she will say, "I love you, Mommy."

 

As the time draws closer, my emotions are aweful.  I was awake last night until midnight crying, finally I went in and got her out of bed, just so I could snuggle with her and trust me she is a snuggler, like sharing your pillow kind of snuggler. 

I ask you all to please join me in this week and the weeks to come to pray Pslam 91 over our family...

"He who dwells in the shelter of the Most High

Will abide in the shadow of the Almighty.

I will say to the Lord, "My refuge and my fortress,

My God, in whom I trust!"

For it is He who delievers you from the snare of the trapper,

And from the deadly pestilence.

He will cover you with His pinions,

And under His wings you may seek refuge;

His faithfulness is a shield and bulwark.

 

You will not be afraid of the terror by night,

Or of the arrow that flies by day;

Of the pestilence that stalks in darkness,

Or the of the destruction that lays waste at noon.

A thousand may fall at your side,

And ten thousand at your right hand;

But it shall not approach you.

You will only look on with your eyes,

And see the recompense of the wicked.

For you have made the Lord, my refuge,

Even the Most High, your dwelling  place."

 

 

I was given a book, God's Shield of Protection, Psalm 91, by Peggy Joyce Ruth, 3 years ago by my sister in law.  I could not pick it up and read at that time, my mind was not in the right place to sit down with a book and then I eventually just placed it on my shelf and forgot about it.  After finding out that Natalie was going to have surgery again, I started to get anxiety and knew I needed a good book to read.  I saw this on the shelf and thought, this will work for now.  Wow, I was in for a surprise.

 

Psalm 91, has been a huge blessing for me this summer as I prepare for Natalie's upcoming surgery.  The pslam has giving me a since of peace when I need it the most. 

 

"He will cover you with His pinions and under His wings you may seek refuge" Psalm 91:4.  God is always there and he will cover us, but we have to run to Him; He does not come to us.  Just like a mother hen, she spreads her wings and calls out and the little chicks come running to her. 

 

Satan knows our weakness and takes advantage of that.  Just last week, our Sunday school class was having a little prayer service for us.  I thought the day was going to run smoothly.  Satan knew how to get to me that day so by the time I made it to the prayers service I would be frustrated and my heart just not there or he thought. The lady who was going to help with the Carter the first week of October backed out, Carter came home from school in the worst mood and it was a constant battle all day with emotions.  Finally, at about 4:30pm, I stood in my kitchen about to cry and said out loud, which I never do, "Satan, you will not win this over me today, go away." Now, did my kids stop crying immediatlely, no, but by the time we walked into that prayer service, we all were calm and had a since of peace about us. 

 

Satan has been attacking me alot lately, because he knows I am fragile right now, but he is not going to win.  In Ephesians 6:16 God tells us, "We have a shild of faith to extinguish all the flaming darts of the emeny."

 

So I ask you all to prayer Psalm 91 over my family this week as we continue to prepare for Natalie surgery next Monday. 

Rocking Climbing, Nails and Life

 

I know it has been a while since my last post, sorry about that.  September has been full of fun and craziness as we prepare for Natalie's surgery.

 

Kindergarten has been awesome for Carter!  He is doing really well and excelling.  We have been working on writing better and reading.  He brought home a book last night, My Playhouse.  The book is terrible, but that is what you get with begining readers.  He read the entire thing to me multiple times!  We also have been working on sight words for him, such as I, a, the, can, see, go and we.  He gets more each week, but for this week, those are the words.  He can spell them and pick them out in books!  I can't be more proud of him, he is doing amazing!

 

Last weekend, he went to a birthday at Amarillo Rock Climbing House, ARCH.  Oh yes, it was army themed, if you could not tell by the pictures.  He did great for the first time.  He did not make it totally up the wall, but did not do bad for the first time.  The party ended with the all the boys playing army, too funny to watch boys being boys.

 

Everett Thoennes and Carter climbing

Carter repelling

Natalie has been doing good for the most part.  As you can see in the picture below, she loves her nails painted. I have found that Sally Hanson Instant Dry, is awesome!  Believe it or not it really does dry in 60 seconds. 

 

Overall her health is steady for her.  She is not eating great, but I normally can get one good meal down  her and the rest I just try my best.  She has been tired alot, which is not abnormal for her. 

 

She got to start back to school for 3 weeks and this week I pulled her until after Christmas.  We are getting close to the surgery and she can not get sick.  Please pray that she continues to stay healthy until surgery.

Larry and I went to the Tri-State Fair Gala and heard Josh Abbott Band.  We were super excited to get out and enjoy good friends, food and music.

 

I have been preparing for us to go out of town for Natalie's surgery.  I told Larry it is so different this time, because I can actually pack my own clothes and get things organized at home before leaving.  Last time, I went to Dallas for the day and never came home for 9 months. 

 

I have had a lot of anxiety, but I have to keep remembering God is in control and she will be fine.  It just  as a mother and a parent, it is so hard knowing your kids is about to have open heart surgery again for the fourth time.

 

I was having a bad day a few weeks ago and got on facebook.  I do not even remember who posted this, but it was a huge blessing for me that day and always...

 

Philippians 4:6-7

"Do not worry about anything; instead, pray about everything.  Tell God what you need, and thank him for all he has done.  Then you will experience God's peace which exceeds anything we can understand.  His peace will guard your hearts and minds as you live in Christ Jesus."