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"

 

 

All Done

We just met with Dr. Forbess.  He said she did wonderful!  We should be able to see her here in the next couple of  minutes, but just for a second and then we have to wait again for another hour or so, before we can go back into the CVICU room.  They will get here all situated back there and hooked up to the machines.

We also got a nurse that we are really close with today, that will be Natalie's nurse.  We just feel so blessed right now!   Thank you all again!

I will update later tonight...

Off Bypass and Beating on Her Own

Finally got the call...Natalie is off bypass and I could hear her heart beating in the background all on her own!  Praise the Lord!  They still have some more left to do, but overall she is doing amazing.

 

Thank you all for your constant prayers and support today!  It has been an emotional day and I am overwhelmed by all the support and prayers from you all...thank you.

 

Second Update

Natalie is doing good!  Dr. Forbess is working towards bypass and once she is on bypass, he will begin fixing her heart.

First Update

We just got the first call, Natalie doing great!  Dr. Forbess has started cutting.  The next hour will be cleaning up scar tissue and then, they will be putting her on bypass.  Will update you in an hour or so...

Natalie is in the Operating Room

Today is the big day, 4th open heart surgery here we go, whether I like it or not.  Natalie did great this morning and even put on the hospital pjs without too much fight. 

She is currently back in the operating room now.  The first hour or two will be prepping her; ivs, putting her to sleep, etc.  I will let you know when we get the first update.

Thank you all again for the prayers and support.  I  have felt an overwhelming sense of peace today and know Natalie is great hands and will do wonderful!  Not going to lie, letting my baby go was difficult, but she is going to do great.

Please pray for Dr. Forbess the surgeon, Dr. Spann the anesthesiologist and the rest of team right now.