Merry Christmas

Merry Christmas

We wish you abundance happiness, and peace in the new year filled with hop

 

 

"Let your hope keep you joyful, be patient in your troubles, and  never stop praying"

Romans 12:12

Power of Prayer

I asked for prayer the other day for my friend, Amelia.  She was in a horrible car accident on Monday, Dec. 10.  Amelia has been in the hospital in a coma since with a severe brain injury.  This past Wednesday, we got the news that she would never wake up from  her coma.  As you can image, we were devastated.

 

Thursday morning, her dad asked us all to pray that her condition would not get worse so they could donate her organs.  I mean, how selfless to be asking people to pray for that, when here it is your own daugther that is passing away.  My heart was breaking...

 

The doctors took Amelia off all sedation Thursday night so her body would be ready for organ donation the next day.  Friday morning, the took her off the vent.  However, Amelia's story was not over, she started breath on her own, 6 bpm.  You can not consider someone legally brain-dead with 6 bpm.  Oh My Goodness! What an emotional roller coaster!

 

The doctors called off the transplant team.  Amelia got a feeding tube and a trachea.  She is also having some purposeful movements, which is amazing!  She still has a long way to go and there is a lot of unanswered questions, but for now it seems she is getting better. 

 

Please, please continue to prayer for complete healing. 

 

Pray for strength for her family and for her little kiddos. 

 

 Please also pray for the unknown people who got the call that they may be getting the gift of life, only to find out later, they would not. It is such double-edged sword for me.  I have such a hard time praying for the gift of life and I know I may be back in that position one day with Natalie, but I have a hard time, because I now know what the pain the family and friends of a loved one gone on to Heaven would feel like. 

 

I thought I lost an amazing friend Wednesday night only to find out she is still fighting...Praise the Lord!  Amelia has always been tough as nails and now, I am blown away even more with her fight. 

I have read several books about people and kids experiences going to Heaven and back during a devastating time like this one.  I truly believe Natalie has been to Heaven or a place in between, where she walked with Jesus and my dad during her surgeries when she was on the bypass machine.  I love asking her questions and seeing what she says.  She may never really remember and may never be able to tell us about it, because she is so young, but I believe she has been in Jesus presence.  Sometimes Natalie talks to no one (like an imaginery friend of some sorts). I know she is a 3 year old, but my heart smiles, because I think she is talking to her angel. 

 

(I got this off facebook from Amelia's page, but I just love it)
Charlotte, Amelia and Theo

I just feel that Amelia has and is in the presence of our Lord Jesus Christ, while the Almighty Healer is working on her; healing her.  Please continue to pray for her complete healing, bring her back to her babies, friends and family.

Happy Birthday, Carter

I went to sleep last night with a 5 year old and woke up with a 6 year old. 

 

Happy Birthday to my amazing, sweet little man, that is not so little anymore!

Carter and Master Kim at Tae Kwon Do

School Buddies
Wyatt Purser, Carter and Ethan Bentley

The Protectors of the Block
Everett and Sy Thoennes and Carter

Carter this summer

Carter riding bikes

Carter and Papa

Carter this summer in Hot Springs
 

Focusing on Jesus with a troubled heart

"So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."

Isaiah 41:10

 

 

My heart is troubled these past few weeks and especially after this past horrific event on Friday in Connecticut.  I have decided the best and only thing to do, is focus on Jesus, his birth and what an ultimate sacrifice he made for us.

 

I posted a few weeks ago about our dear friends, the Oliver's whose son, Seton earned his angels wings.  I ask you all to continue to lift their family up in prayers, especially during this holiday season.  Nothing is harder than the first holidays without a loved one, but especially a child on Christmas.

 

My good friend and one of my college roommates, Amelia Mayhall Hiltz, was in a horrible car accident a week ago and is in critical condition.   A women was driving down the wrong side of the highway and hit Amelia's car, along with two other vehicles.  From my understand everyone else is okay, but Amelia sub-stained a severe head injury and has been in the hospital.

 

The doctors have kept her sedated.  They did try to wean her off the sedation this weekend, but ultimately had to put her back on full sedation, because she was getting to agitated. 

 

Amelia has two small children and thank goodness, they were not in the car with her.  Please pray for God's complete healing over her and strength for the family; hospital waiting is the worst and can drain you emotionally and physically.

 

This is an old picture, but it is the only one I had a digital copy of.  I know, that may date me quit a bit, that I graduated college before digital cameras where the  new and big thing, or at least I did not own one then.

(Renee  Polk Sheppard, Robin McDaniel Coe, Amelia Mayhall Hiltz, Amy Brandon Waggoner, Leah Scott Carter and Me)
 


I do not know about you all, but I literally felt sick to my stomach last Friday when I turned on the tv and was watching what had just unfolded in Connecticut.  My heart goes out to all the families involved, not just the ones who lost loved ones, but also to the families who children survived.  I can not image what those kids have going through their minds and what they will, when they finally step back into their school someday. 

 

I know I held my kids a little tighter Friday night.  Carter is now in public school and I can not image the horror they all went through and are still going through.

 

As all these events have been unfolding around us these past few weeks, my heart is troubled and hurts for all.  I do not know if I am more emotional now that I have kids and especially Natalie.  I look her everyday and thank God she is still with us.  I am forever changed as a mother, a daughter, friend  and a wife.

 

I have just recently discovered a new Christmas song by MercyMe, Joseph's Lullaby.  The song is absolutely amazing and puts Christmas into prescriptive.  I can not  fathom what God went through knowing the day of Jesus's birth, what all he would have to go through in life; what all Jesus went through for us...

Joseph's Lullaby  by MercyMe

 

Go to sleep my Son

This manager for your bed

You have a long road before you

Rest your little head

 

Can you feel the weight of your glory?

Do you understand the price?

Or does the Father guard your heart for now

So you can sleep tonight?

 

Go to sleep my Son

Go and chase your dreams

This world can wait for one more moment

Go and Sleep in peace

 

I believe the glory of Heaven

Is lying in my arms tonight

Lord, I ask that He for just this moment

Simply be my child

 

Go to sleep my Son

Baby, close your eyes

Soon enough you'll save the day

But for now, dear Child of mine

Oh my Jesus, sleep tight



Christmas is Upon Us

Natalie, Frosty and Carter
Frosty has been with us for 9 years now and he still works like a champ

I know it has been a few weeks since my last post, sorry.  We got all caught up in traveling for Thanksgiving only to come home and be thrown into the Christmas season.  Plus, I have been battling a cold for a week now.

We had a wonderful Thanksgiving!  How could we not, we have so much to be thankful this year.  We took off the Monday of Thanksgiving and headed to Dallas.  As we were loading up the car, I kept telling Larry I did not know why we were trying to take his truck when we could take my car instead.  He said we could not fit it all in my car, but I was more worried about what we were going to do with all of our stuff while we were at Natalie's doctors appointment the next day.  I could just see Carter's bike being stolen and having to deal with him being upset the rest of the trip, but Larry insisted, so I decided it was not a battle I cared enough to fight.  Boy, am I glad I gave up the fight.  We were outside of Decatur when a piece of sheet-rock flew off a truck and nailed Larry's brush guard.  If we were in my car, it would have been bad, like busted head light and possible windshield damage not to mention it would have blown out my tire and who knows what would have happened to all of us.  But because we were in Larry's big truck, we had no damage at all.  Can you believe it?  God was totally watching out for us!  Now, Larry's truck was pretty funny looking.  It was literally half black and have white from the sheet-rock, but we were all safe.

Tuesday was not as dangerous as Monday.  Natalie had her follow up at Children's with Dr. Zellers.  She had labs, were her potassium was 3.9 (amazing for her and normal levels), xray, where her chest was totally clear still and we met with Dr. Zellers as well.  Natalie is now back on all her normal medications that she will remain on for life, no more extra stuff.  She is still not back to her beginning weight before surgery, but we are working on that and her oxygen was 79, which will continue to increase over the next year.  Best news is though, we do not have to go back for another 6 months!  Can you believe a little over 2 months ago she had her 4th open heart surgery and today is doing amazing? 

Now, her voice is still not back to normal, but is getting stronger.  Not sure if I ever mentioned that or not.  Her voice has been a little weak since surgery, making it sound, how should I put this best, light and winy.  She is now talking were I can at least hear her, so that is good.

Oh and let me mention, because I know you were all concerned, but Carter's bike was fine.  We decided to just valet park, so they could keep Larry truck close and keep an eye on it for us.  Traveling with us is always an adventure.

We then left Dallas for Austin, so we were on Dallas for about 16 hours and that included sleeping an a doctors appointment.  We were on the move.

 

Larry's sisters, cousin and aunt in uncle all live in the Austin area.  We have Thanksgiving there every other year.  My kids had a blast with their cousins!  They played outside the entire time and basically were only inside to eat and sleep.  The weather was perfect and we had a wonderful time.

 

We packed back up on Saturday and headed home.  I do not understand why my kids choose to stay awake the entire road trip only to go to sleep 15 minutes outside of  our destination.  Which  means, they talk the entire road trip and when I say the talk, I mean they can talk without even taking breaths it seems.  One thing for sure, my kids seem to have a lot to say and a lot of questions.

 

Sunday we got all decked out for Christmas; tree and lights went up.  Carter is so pumped this year about Christmas, which makes Natalie excited as well.  Character, our Elf on the Shelf came back for visit this year as well, making life more interesting for all.  I have the hardest time remembering to move him every night.  I forgot the very first night he was back; awesome mom right here.  I have made a mental note to try and not forget the rest of the holiday season.  I am just thankful there is only a few more weeks left.

 

The past week was a difficult week for us.  I have mentioned on my blog before about Seton Oliver.  He earned his angel wings this past week.  His life was short, but he impact has and will continue to touch many.  His parents, Zane and Shawna, are truly an inspiration to all.  Their faith is incredible and Larry and I feel blessed to have them as friends and to have known Seton. 

 

 You can read more about Seton and his miraculous life on their blog

 

http://theoliverslife.blogspot.com

 

If you go to their blog, check out the song a guy wrote from the, God Needs Little Angels.  Oh my gosh, it is amazing! 

 

 I am forever changed because of Zane, Shawna and Seton.  Thank you for sharing your son's story and your story with us.  I will be comforted in knowing God has one amazing little angel watching over us.

 

Isaiah 40:31

"But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"

Blessings and Thankfulness this Season

My sister-in-law asked us to write down what we are "Thankful" for this season so we could read them after our Thanksgiving lunch.  My first thought was I do not think there is a enough time in a day or enough paper for me to write down all I am thankful for this year. 

I have been blessed beyond what I could only image this year.  I had such fear and anxiety leading up to Natalie's surgery, that could not sleep most nights and if I thought about it all too much, I would break down and cry. 

I know God says in Jeremiah 29:11, "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."

There is just something as a mom, knowing your daughter is about to have her 4th open heart surgery.  How can you not worry a little?  I still have that knacking thought I the back of my head, that my dad passed away so that when Natalie earns her angel wings, it won't be so hard for me in a weird way.  I know that is not the case for right now; right now my dad is in Heaven so that when Natalie had her surgery, she was would be held in his arms and Jesus arms while she was on the bypass machine.  I have no doubt in my mind that Natalie has met some of the most amazing people in Heaven while she was there briefly during her surgeries.

I never brought this up the days following Natalie's surgery.  Once they are in surgery, someone from the O.R. calls every hour to update you on the progress.  Well, after the first call you pretty much memorize the time so you know about when to expect the next call.  I mean, you can not take your eyes off the clock, it is a horrible feeling.  Every time the phone rings, whether it was for you or the other family in the room, the entire waiting room goes silent.  It is just the understood respect you have for one another, because you feel a little of the pain and worry they are going through at that very moment.

Well, there was a small period, where we did not get a call for a hour and half.  I just sat there watching the minutes tick away, freaking out every time I saw a doctor pass the waiting room.  I have never felt so helpless at that very moment in my entire life.  Finally, I went to the front desk trying to keep it together the best I could.  Of course, everything was fine.  The nice lady from the O.R. apologized and said they were waiting on the echo results before she called me, because Natalie was off bypass but depending on the results they sometimes put them back on bypass.  She basically wanted to give me the best information possible; I totally understand, but for 30 minutes I prayed so hard for fear of losing my baby girl. 

So to write down what I am thankful for this year, might be a mile long, but I thought I would give you a short list...

 

I am thankful for:

• Natalie...For her being here with us today and for making our world what is it; My miracle baby 
• Carter...For his health and for making life so fun and interesting; I love my little man
• Larry...For being my rock all these years and the love of my life
• My mom and Larry's parents...We would not be the people we are today with out you all and we definitely could not do everything without you
• Friends and Family...You have all shown me what a true friend is and I am blessed to have you all in my life
• Children's Medical Center...For the amazing doctors and nursers there. We owe you my daughter's life
• Prayer Warriors...Because of you, my daughter is still alive...Thank you!

I could go on forever, but that is a brief overview.  I am blessed beyond my wildest dreams this year and so thankful for all the amazing men and women, who have touched our lives this year through prayer and support. 

"Learn to appreciate difficult days.  Be stimulated by the challenges you encounter along your way.  As you journey through rough terrain with Me, gain confidence from your knowledge that together we can handle anything.  This knowledge is comprised of three parts: your relationship with Me, promises in the Bible, and past experiences of coping successfully during hard times.

 

Look back on your life, and see how I have helped you through difficult days. If you are tempted to think, "Yes, but that was then, and this is now," remember who I Am! Although you and your circumstances may change dramatically, I remain the same throughout time and eternity.  This is the basis of your confidence. In My Presence you live and move and have your being."

 

Jesus Calling by Sarah Young

 

What has been happening...

Since my last post things having continued to be crazy in our world; go figure.  I feel like we have been home from Dallas for at least over a month, but in all reality, it has been a little over 3 weeks now. 

 

The weekend following my last post, Carter had his final soccer games of the season.  He played Saturday, but had to miss Sunday's game.  At his game on Saturday, Carter scored 3 goals, such a nice way to finish up the season.  Sunday, Carter woke up and just never got that spark that he normal gets.  Well, by that afternoon he started running fever and went downhill fast. 

 

Monday morning we went to the doctor (what would be a week with out some doctor's office or hospital visit) only for Carter to test positive for strep and the flu.  Oh yes, he got the flu mist but still got the flu.  When your child gets the flu, the whole family gets to take medication to be on the safe side.  Lets just say, I made a small investment in Tamaflu.  Tamaflu is expensive stuff, but it does work.

 

Carter was miserable for a about 24 hours and then finally turned the corner.  You know your child feels yucky, when they ask you what they did to get this and how to never get it again, which I took as a learning lesson about washing hands and keeping them out of our face.  He is fine now and back to enjoying kindergarten. 

 

Natalie has continued to thrive.  Her oxygen is still about the same 79-80, but her coloring is amazing.  She did gain a pound in the past 2 weeks, so I am thrilled.  Her appetite has increased and things are getting back to normal; whatever that is.

 

Natalie has officially gotten her 3 year old spunk back.  I had to actually put her in time out the other day, because she was throwing a fit.  I know, but as irritating as it is to have a child throw a fit; I did get a smile of on my face, because it is so nice to see her act and feel like a normal kid.

 

Both kids loved Halloween this year!  We let Natalie go to a few houses too and man, she had a smile on  her face the entire time.  She kept saying, I want to fill my bucket up to the top with candy.  And since Halloween,  she asked for candy for breakfast everyday.  I guess she thinks one day I will give in, if she just keeps asking.

 

 

 

Natalie as Minnie Mouse, bet you didn't see that one coming

Carter as the red Power Ranger

 

On a side note...Natalie chewed through her last pacifier today.  I mean,  it is about time to get rid of them, especially when she is chewing holes in them. I have been telling her once she chews through the last one, we are done.  Say a little pray, she just cried herself to sleep for a nap.  Next up, potty training, but I think I may wait until after Thanksgiving.  I hate to throw to much at her a once.

 

"I am with you and will watch over you wherever you go. I will meet all your needs according to My glorious riches.  Nothing in all creation will be able to separate you from My Love."

Jesus Calling Daily Devotionals, Sarah Young

 

I will try to get better on posting at least once a week.  Last week just wore me out with Carter having the flu.  I spent my entire week cleaning and disinfecting over and over again.

Update on Natalie

Natalie is doing better everyday!  She has decided she loves fish sticks and wants them every meal; I do mean, breakfast, lunch and dinner.  Why, I have no idea.  Now, I do not let her eat them every meal, but I am okay with at least once a day.  I am just glad she is starting to eat more.  In fact, today has been the best day so far.  She did not eat breakfast, but had a great lunch, dinner and a couple of afternoon snacks.  I just need to get some weight on the tiny little thing.  She is like holding a skeleton right now. 

 

We did have an appointment with our pediatrician this week.  Natalie's oxygen was 79, which is not bad for right now.  Her oxygen should continue to increase over the next year.  I can't wait until someday, I can type she is in the 90s, but I will be patient for now.

 

We had xray and labs today at the hospital.  Natalie got to wear a nice little mask to keep the germs away.  She was not a fan, but dealt with it.  Her labs went better today than they have in a long time.  We had one stick and the before I  knew it, two tubes were full.  Normally, we  have more than one stick and it takes forever for her to full one tube. 

 

Ready for the big news...drum roll, please....Her chest xray looked great!  Dr. Scott, our pediatrician, called Dr. Zellers.  Zellers called and said Natalie can stop on one of her medications and can cut back to once a day on another.  That means, we are almost back to our normal medications (1 aspirin and enalapril twice a day); she will take these the rest of her life.

 

We will go back to Dr. Scott in a couple of weeks for another check up, but right now she is doing great and gaining more strength.

 

Thank you all for your support and prayers, they are working! 

Home Sweet Home

We are home!  I know, I am sorry I have not posted in a couple of days, but we have been getting settled back in.

 

Natalie's appointment with Dr. Zellers was actually moved up to Thursday.  He took her off the potassium, which she is super excited about, because from what I hear, it does not taste good at all. She still has a little fluid in her lungs, but he said that would be expected on the fontan and could last up to 6 weeks post op.  Good news, we can monitor that her in Amarillo!  Natalie will go for labs and xray here locally this week and probably every week until her chest is totally clear.  She is still on medication to help with the fluid,  but the medication allows her to hold onto the potassium.  The is good, so we do not bottom out her potassium again. 

 

She came on home with 4 medications, two of which we have taken and she will take the rest of her life.  The other two medications we will eventually wean her off of.  She does go back to Dallas in about a month.  Dr. Zellers is so awesome!  He is working us in the week of Thanksgiving so we can just stop off in Dallas for a night and day on our way to Austin verses making a whole other trip out of it.  I am done with packing a bag for a while. I am loving living out of my closet right now!

 

Natalie is super happy to be home!  She is still not eating great, but getting better.  Her activity level is still not great, but she is only 3 weeks post op from open heart surgery, so I do not blame her.  She also has pretty strict restrictions for the next 5 weeks too.

 

Carter was pumped that we were home!  He did not know we got home Thursday, so I surprised him Friday picking him up from school.  I think I got the biggest hug ever!

 

We have just been relaxing this weekend and enjoying being together as a family under one roof, our roof.  Thank you all for your continuous support and prayers!  We could not have done this without all of you.

 

I will continue to post, but probably only once or twice a week. 

 

1 Samuel 1:27

"I prayed for this child, and the Lord granted me what I asked of him"

Tea Party Anyone

What do you do when you are stuck in a hotel, but finally allowed to have a big bath?  Why have a tea party of course!

Natalie's Surgical Follow Up

Look what we recieved from being such a big girl at clinic today
Daddy, thinks he in for a lot of trouble...
PS She just told me she loved the earrings, too funny

 

Natalie had a wonderful surgical appointment today!  We actually got to the appointment early and was able to spend a little time with the Gomez family.  A sweet family from Amarillo, whose 15 month old daughter, Audree, received the gift of life this morning.  She has been awaiting a heart transplant for almost a year now and was blessed to receive the call yesterday.  I am happy to say, Audree is doing very well with her new heart, but still has a long road to recovery. 

 

Please pray for Audree and her recovery, but please pray for the donor family who lost a loved one yesterday. 

 

Natalie had labs, xray, EKG and we met with Melissa, Dr.Forbess's Physicians Assistant.  Natalie's labs have all gotten much better.  We still have a little ways to go, but we are on the right path.  Her xray was looking better as well.  She still has a little fluid in her right lung, but it looks so much better than her xray just a few days ago.  Her EKG is still awesome, which is wonderful news!

 

She has lost some weight, which is to be expected, but the girl still is not eating much.  The last two days, she eats a little throughout the day, but at night eats a lot (for her).  I am hoping we are making a turn for the good, because she is little skeleton right now.

 

She also got the little strips off her incisions today.  Man, her chest is looking so much better.  We got to take a normal bath tonight and what  better way to celebrate than have a tea party in the bath tub.  She had a blast! 

 

Thank you for your continues prayers, they are working.  Natalie is doing better everyday and getting stronger as well. 

Natalie Update

We got two great nights sleep, first time someone did not come in and wake us up for xray, vitals or lab draws.  I feel like a new women!  Natalie seems to be doing better as well.  She is walking around our new little home for the next week (Residences Inn Marriott).  She still is not eating great, but better than she did.

 

We have just been laying around playing, coloring and watching movies and I will assume this is our life for the next week.  I am not complaining either; I am going to enjoy a little down time before we head home to my 5 year old that has more energy than 4 kids combined it seems.

 

Larry is on his way home now for the week.  He will fly back in Thursday night, so he can go to Natalie's appointment with me Friday and help us drive home.  I am not sure if we will be home Friday night or Saturday.  I think it will depend on how long her appointment is Friday with Dr. Zellers and how she is doing in the car. 

 

Thank you again for all the prayers and support over the past few weeks!  I truly believe Natalie is doing so well, because of the power of prayer.

 

I will probably not update again until Monday night, because living in a hotel is not that exciting.  Natalie has her surgical follow up appointment on Monday morning, so I will update when we get back and get settled.

 

 

All clean and ready to bust out of the hospital

One last stop by the Pharmacy for yucky medication and then we are out of here

We are out!

Playing with our Minnie's our new little home

James 5:16"

The prayer of a righteous man is powerful and effective"

Getting Discharged

Natalie's EKG and potassium are normal today, that means we are getting discharged!  Thank you all for the prayers and support for the past couple of weeks.

Natalie and I will be staying for another week.  She has a surgical follow up on Monday and then we see Dr. Zellers on Friday the 19th.  I can handle one more week, especially not being in the hospital.

I will try to keep posting this week, but I am not certain how my wi-fi connection will be.  I will do my best, it just might not be everyday.

Romans 12:12

"Be joyful in hope, patient in afflication, faithful in prayer"

Potassium still low

After a 4 hour iv of potassium, Natalie's potassium is still low.  Now, it is a bit higher than yesterday, but not to where it should be.  She is now getting potassium 3 times a day by mouth.  The potassium does not taste good at all, so we mix it with a little gatorade and that helps some.

 

Her chest xray still looks the same, but it is not concerning a this point.  Natalie is scheduled for another EKG here in a bit.

 

Poor girl is just flat done.  She is so ready to be out of here and I am too. 

 

Please pray her potassium stabilizes today!  I will try to update again tonight with more information about everything today.

No Oxygen

A clean little girl with no oxygen

Today has been a big day for Natalie!  We got her off the oxygen.  This is the first time in over a week we saw her pretty little face without tubes.  She also got a bath for the first time in 9 days.  We had one good smelling little girl!

 

Her chest xray and potassium were the same as yesterday.  We are currently giving her potassium through her iv right now.  We had to do it over a 4 hour period and have only 23 minutes left.  She will then have a blood test to check her potassium level and an EKG.  So tonight will be a long night, but I am praying we get this all figured out and stabilized.

 

Overall, Natalie is fnally getting her personality back today.  She has sang a few songs and just seems happier. 

 

Sorry for the short post today.  I will post more tomorrow and try to post in the morning this time.

 

A Week Ago

A week ago today, Natalie just had her 4th open heart surgery.  She is doing better and getting stronger daily.  I truly believe we are doing so good, because of all the prayers, thank you all much.

 

She still has a little fluid in her lungs and her potassium is down, but we have had her up walking so hopefully that will help.  She still does not have much of an appetite, but I did get some food down her today.

 

The doctors decided that her oxygen may just be lower because of her size, so we are now trying to wean her off the oxygen completely.  She has been lowered down quit a bit today and hopefully be tomorrow she will be completely off

 

For us to actually get discharged, she needs to be off oxygen, potassium stabilize and no more fluid on her lungs.

Natalie and I taking a walk

Carter, Natalie and Gran

We had a great weekend with family in town.  Larry's parents came in town, my aunt and cousin from Houston and Carter!  Carter has a wonderful time seeing  his sister and it perked her up when he was around.

 

Carter, Larry and Papa went to Legoland Saturday.  Carter had a blast!  I think Christmas this year is going to be a Lego Christmas at my house at least from him. 

Carter and Larry at Legoland

Romans 15:13

"May the God of hope fill you with all the joy and  peace n believing, so that by the power of the Holy Spirit you may abound in hope"

Natalie - Quick Update

I thought I would give a quick update for today.  Natalie is doing better!  Everyday it seems her energy level is getting better and she is getting stronger. She is now sitting up more by herself without help, which is nice on so many levels.

 

Her chest xray showed a little fluid back on her lungs again today.  Her potassium is also down.  It is catch 22...we give her lasiks to get the fluid off her lungs, but it also brings her potassium down.  We are going to try a few new things to see if they will work.

 

Her oxygen has not changed much.  They did lower it a little from yesterday, but we need her to be totally off before we can leave.

 

Today, I am asking for prayers for her stats to continue to stabilize, the fluid in her lungs to clear and for her potassium levels to get better. 

Day in the Life of Natalie at Children's

Natalie had a great day today!

Natalie got her Healing Helpers Minnie today
Minnie and Natalie...Zipper Buddies

Minnie's Mended Little Heart

Carter came to visit
They are playing Minnie's together

Carter's poster he made Natalie to feel better
I wish I got a picture of the smile on his face going up to her room.  He was so pumped, it was the cutest thing in the world!

Play-Doh Time

Natalie and Carter playing

Natalie took a wagon ride to the playroom today and walked back

Gran and Natalie playing together

Natalie - Day 6 Update

I wanted to give everyone a quick update before the day gets going.  Natalie had another good night for as much as you can have when people come in at least once during the night and wake you up to check your vitals and give you medication, but at least it is only once. 

 

Natalie chest xray looks great again today!  She is also taking all medication orally now, which is a great start to getting out of here.  Thank you to whomever and to all who actually prayed for her to poop, because she did last night and it was huge and gross (sorry for the TMI, but thank you).

 

What we need just to get her off all oxygen now and we might be getting out of here then!  She is currently on a small amount, but it will take a couple of days to get her off probably.  Her stats are getting a little better.  She does great when she is asleep, but they lower a bit when she is awake and moving.  I think she just needs to get stronger, nothing like have your chest cracked open to weaken you.

 

Below are a few pictures from the Sunday before surgery.  My sister-in-laws from Austin brought Natalie a 4ft Minnie Mouse.  She loves it and it is huge.  I actually think Minnie will be taller than Carter too.  Thank you Harrell and Aurit Families!

Natalie with a 4ft Minnie Mouse, taken Sunday before surgery
Thank you Harrells and Aurits!

Natalie trying to give Minnie her paci, but Minnie is a "big girl" and does not need a paci.
Natalie has limited time left with her paci.  I told her when we come back for a check a month or so after surgery, we are leaving the paci for the babies

I have had a ton of amazing bible verses sent to me throughout all of this and I wanted to thank you all.  The verses have been so encouraging to us. We are so truly blessed by all the love and support from everyone; thank you.  Here are a few verses I received over the past two days...

John 16:33

"I have told you these things so that you would find comfort in Me. In this world, you will suffer; but be courageous, for I have overcome the world."

 

Hebrews 11:6

"Without faith, it is impossible to please God.  For he who comes to God must believe He exists, and rewards those who diligently seek Him"

Morning Walk and Ride

Natalie had a pretty good night again last night.  Her chest xray finally looks good, so we are hoping to get her off oxygen either today or tomorrow.  Her stats are still a little crazy, so we need them to stabilize more.  Dr. Forbess stopped by this morning to check on her.  He said her oxygen would still be low until her hole in the fontan closed, which could be a year. 

 

Natalie finally walked some today, of course she fought me the whole time.  She walked to the playroom on our floor and back.  Poor thing was so worn out by the time we got there, we pretty much turned around and came back.  She has been napping ever since.

 

Natalie and I finally got to facetime last night with Larry and Carter.  She was so happy to see "Bubba", but she really misses home now.  She keeps asking when we are leaving the hospital. 

 

If Natalie keeps up the progress she is having, we should get discharged sometime next week.  Now, we still have to stay for a few days for a follow up appointment, but we would be out of the hospital.

 

Thank you all again for all the prayers!  Today, I ask for prayers on her stats stabilizing more, her appetite to continue to get better and for her to poop...nice I know, but she needs to.  

Natalie the playroom at Children's

Chillin in the rocking chair playing the ipad

6am morning wagon ride to xray

Natalie standing yesterday and her face says it all, she is not a happy camper about it

Natalie - Day 4...Big Day

Natalie has had a big day today so far.  She got her chest tubes removed and the rest of her pace wires out.  She also got the iv in her foot removed as well.  She still has the iv in her arm, but that is okay.  I think once it goes bad, she will not need another iv.

 

Her chest xray still is not great on the right side, so we need to get that cleared up.  She is still on a little oxygen, but they are going to turn it down some here in a bit.

 

She had an echo this morning and a chest xray.   She actually walked across the hall for the echo and walked back.  Of course she protested the entire time, but she did it! 

 

Poor thing is totally wiped out right now and taking a good nap.  I am hoping to get her back up later and have her sit on the couch to color vs the bed. 

 

Larry flew home this morning to be with Carter.  Carter has done incredible this week and we could not have done it without all the amazing help.  Yesterday was the first time, he really started getting sad and asking when we would be coming  home.  So this morning, he jumped up with excitement that daddy was going to be home.

 

I will take some pictures later and post more tonight, but I just wanted to give a quick update while I could.  Natalie has become a bit "high maintenance" to say the least, but who can blame her. 

Natalie - Day 3

Natalie feels so much better today, not wonderful still, but a huge improvement from yesterday!  We are out of CVICU on the regular cardiac floor.  She of course got to ride in still to her new floor via wagon.  She has been sitting up a lot more today and coloring some too.

 

I got her to eat a little bit of lunch and crackers.  Her xray still should fluid in her chest, so they upped her lasik.  She also started on a stool softener, so we are hoping to get things rolling soon. 

 

The goal for me today, is to get her to eat more and sit up longer, so we can clear out her chest and hopefully get her chest tubes out tomorrow.  I know she will be a totally different kid once those are out.  Her chest tubes help drain the fluid in  her longs, but the are surgically held in there so it is just not comfortable.

 

Here are some great pictures of Natalie from today...

 

Super excited about the wagon ride

Coloring pictures to decorate our new room

The Minnie balloon she suckered dad into getting her yesterday

Here we come 8th floor!

I am overwhelmed by the power of prayer these past few days!  I got a few text messages first thing this morning and told them my goal of getting her to eat more today.  Prayer request moved quickly and by the time it was lunch time, she eat some.  God is amazing!  Thank you all for your constant prayers and support!

Psalm 77:13-14

"Your ways, O God, are holy.  What God is so great as our God?  You are the God who performs miracles; you display your power among the people"

 

Philippians 4:13

"I can do all things who Christ who strenghtens me"

Update on Natalie

Natalie sitting up for a brief minute

Natalie is having an okay day today.  She basically has been napping off and on all day.  This morning she did get a few lines out as well and they took the dressing off around her incision, which she was not a fan of any of this.  She still has her chest tubes in, two ivs and her pace wires, but they are not hooked up.  She is also on a little oxygen. 

 

Our may focus today was to get her to drink more.  She is doing okay, but she just wants to lay there.  I did get a little snuggle time with her for a bit and I did paint her toe nails.  Larry also bought her a big Minnie balloon; daddy is such a sucker, but who can blame him right now.

 

We are hoping to get out of CVICU tomorrow, but the cardiac floor is totally full right now, so it all depends if they have a room available for us. 

Our two awesome nurses the last two days, Diandra and Aliana

Psalm 37:4

"Take delight in the Lord and He will give you your heart's desires"

 

 

Thank you all again for all the prayers!  Larry and I feel so blessed by all the support and love you have all shown us.

Thank you for the Prayers

Natalie is doing awesome!  She got the breathing tube out before she even left the O.R., which is not normal at all.  She is being a rockstar right now! 

 

She is taking a little nap, but we did get her to eat a few ice chips and she is watching Doc McStuffins on and off in between nap time. 

 

The nurse said she is as stable as she could be the day of surgery after a fontan.  I can not thank you all enough!  I truly believe she is doing so well, because of all the prayers...thank you all for your constant prayers over Natalie and our family.

 

Isaiah 26:3

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you"