Happy New Year

2009 has been a year of hardships and blessings for my family.

Natalie is our true little miracle!

We feel so blessed to have such amazing friends and family and would like to thank you all for your support and prayers throughout this past year.

We pray that 2010 brings blessings for all

"Be joyous always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" -1 Thessalonians 5:16-17

Santa's Cookies

I hope Santa made it by your home last night. Believe it or not, we had a semi white Christmas in Dallas...who would have ever guested.

Larry and I had been explaining to Carter why you leave cookies and milk for Santa. We both thought Carter understood at least for the most part. So, Carter followed Larry into the kitchen to get the cookies.

He game out carrying the plate of cookies into the living room with Larry carrying the milk behind him. Carter looked so proud of himself and was so happy. He sat the plate on his little table; we thought okay that is nice we can leave the cookies here.

Then Carter pulled out the chair set down and started drinking the milk and took a big bit out of the cookies. It was priceless...

Larry and I laughed so hard. Here we are thinking, okay he understands and in Carter's mind, he is think alright milk and cookies before bed, this is awesome!

You have to love kids, they are so funny. I hope everyone had a Merry Christmas!

Merry Christmas

And the angel said to them, "Do not be afraid; for behold, I bring you good news of a great joy which shall be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord." - Luke 2:10-11

Merry Christmas! We hope everyone has a wonderful Christmas...We miss you all and wish we could be with you during this holiday season, but you are all in our thoughts and prayers.

Happy Birthday Carter

Carter turns 3 today! I can't believe he is 3 already....time flies.

I had to post this picture, because it cracks me up. We have on our "Cars" Christmas pjs. Mater is the coolest thing in our home right now. He has reindeer antlers on that have bells on them singing "Jingle Bells", it was so funny.

Happy Birthday Carter...We love you

Getting Big

Natalie is now 11lbs 5ozs!

Dr. Zellers was so proud of her. All of her stats look great as well.

She has a heart cath scheduled for the 6th of January. Depending on the heart cath and her weight, we will then schedule the next surgery.

5 Months Old

Natalie turned 5 months old yesterday! I can't believe she is 5 months old and that I have been down in Dallas now for 6 months.

I have attached a picture of her the first day she was born. She is in the Children's transport incubator, waiting for transportation.

I also attached a picture of her I took today...look how far we have come!

One Doctor, Two Different Days With Different Kids

Well, we started off to an interesting week. Carter is like most 2 to 3 year olds this time of year...snotty. However, Monday morning he woke up a bit more congested and told me he was sick. I had no idea if he was telling me the truth or what. I asked him if his throat hurt and he said yes, then I asked if his fingers hurt and he said yes. I thought I would go ahead and take him to the doctor to be safe. Poor guy ended up having a sinus infection. We started medication yesterday and he seems to be doing a better, so hopefully this will finally clear him up.

And today, I took Natalie to Dr. Jim, our pediatrician here in Dallas for her 4 month well check up. Yes, I know that tomorrow she will be 5 months old, but we are still playing catch up.

Natalie is 11lbs 4oz! I can't tell you how excited I am in. I have to remember every scale is different, so we will see on Monday what she weighs at Children's and compare. She is in the 10th percentile on everything, but that is okay because we are on the growth chart at least. It is so different than with Carter, he is in the 50th to 90th percentile on the growth chart.

Natalie was a mess at the doctor, she acted liked it was the worse thing in the world. The minute I started taking off her clothes she lost it. I think she was partly sleepy and partly tired of people always messing with her. She had to get 2 shots as well, which she did not care for.

She is right on target developmentally, which is awesome! A lot of times babies who have undergone what she has, would be a little behind in their development. She is laughing, grabbing things, and is so close to rolling over.

We hope everyone is enjoying the Christmas season so far!

We have a had a great week! Carter had his Christmas party at school on Thursday. He is so funny. After I picked him up, he sang Jingle Bells all the way home from school. He calls Rudolph on his play cell every day, just to say Hi.

I know you can probably not see it in the picture, but right at the bottom of the tree is where Carter placed his ornament he made in school...the manager made out of popsicle sticks, so proud of it.

Natalie is doing amazing! She is now taking 3 to 4.5 ounces every feeding. She is gaining more weight and has such a personality now. She is a lot more vocal and laughs all the time.

We go to the pediatrician next week for our 4 month well check...yes, she will be 5 months old, but we are playing catch up with our vaccinations.

10lbs 7oz and Gaining

Natalie is now 10lbs 7oz! She is slowly gaining weight, but she is gaining and that is what is important.

We had a great doctors visit today. Natalie had routine blood work and x-ray done today along with her weight and oxygen check. She is gaining weight and we are almost back on the growth chart for her age.

Dr. Zellers did talk to us about her next surgery. If everything goes as plan, meaning she continues to gain weight at the same pace if not better, she will have the next surgery in January. We will first have a heart catheterization done, which will be a day procedure the first week of January.

The next surgery is the Glenn Shunt. The Glenn Shunt is where they will connect the superior vena cava directly to the pulmonary artery. The superior vena cava is the large vein that brings blue blood from the upper body to the heart.

Now, most people have only one superior vena cava, but Natalie is not most people as we know. She actually has two superior vena cavas. Now this is not uncommon, but this is not common in the least. Dr. Forbess will have to connect both superior vena cavas to the pulmonary artery.

We go back in a few weeks for another follow up and weight check. Please continue to pray that Natalie stay on the same course and continues to gain weight.

Christmas is Up

We put our Christmas tree up and the few decorations we had down here in Dallas. Our house now looks festive and Carter loves it! I guess this is the first year he actually understands Christmas. We still have one big test to pass...will he go sit on Santa's lap without crying, that is too come.

Natalie has her next doctor's appointment on Tuesday. I know she has gained some weight, but I am not sure exactly how much so we will see then.

I hope everyone has a great weekend and enjoys watching football today...Go Hogs!

Happy Thanksgiving

We just wanted to wish everyone a Happy Thanksgiving!

I am so thankful for the outpour of support and prayers we have recieved this year. I am also thankful for family, friends and of couse, Miss Natalie who has been a miracle to us!

Psalm 107:1

"Give thanks to the Lord, for He is good; His love endures forever"

It is the Small Things

Most of you know this has been a hard year for us all around, with Natalie, losing my dog and my father passing away. I know God has a plan for our family and that He and my father are up in Heaven watching over us daily.

I took Carter a while back to Babies-R-Us with me to buy diapers. I always try to keep Carter involved when it comes to Natalie. I never want him to resent her for all we have gone through. Of course, it seems to not phase him at all, but I still try just to be safe.

I told him to pick out a toy for Baby Natalie. I should have known that he would pick out the one that resembles Elmo's face. He was such a proud big brother showing it to her when we got home. I helped him hang it on her activity gym so she could look at (she now grabs it).

Yes, I am not the most aware person lately, because it took me a few weeks to realize that when you squeeze it, it plays "You are my Sunshine." I started to tear up the first time it start playing that song. My father sang that to me almost every night when I was kid.

By a small toy picked out by my son, my father is showing us, he is here with us and watching over us. Wow, God is awesome!

"Love bears all things, believes all things, hopes all things, endures all things"

1 Corinthians 13:7

Happy Kiddos

Natalie amazes me everyday about how good she is doing. She is now 4 months old! I can't believe I have been in Dallas now almost 6 months. I look back at all we have been through since she has been diagnosed back in April...what a whirl wind!

I have been doing Beth Moore's Praying God's Word Day by Day devotional. November 16th really stuck out to me and I wanted to share it with everyone.

Perhaps the most profound miracle of all is living through something we thought would kill us.

I pray that out of Your glorious riches You will strengthen me with power through Your Spirit in my inner being, so that Christ may dwell in my heart through faith.

And I pray that I, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that I may be filled to the measure of all the fullness of God (Eph. 3:16-19).

We survived the flu

Friday was a tough day around our household. Carter felt horrible and just did not understand why. Larry and I were spraying the house down with lysol and washing everything. We were going back and forth spraying ourselves down every time went into his room and back out again.

Carter has not had fever for the past 36 hours! He feels great and sounds 100% better. We are still trying to keep the kids apart to be safe, but life is good at our house again.

We have gained weight!

Natalie had an appointment with Dr. Zellers today. Her echo came back perfect from last week. She is looking wonderful!

Now for the big news...She is 10lbs 3oz!! I can't tell you how happy I am that she has finally started gaining weight again. She started taking more by bottle the last few days and we feed her every 2 1/2 to 3 hours, even if we have to wake her up. Doctor Zellers told us to keep up whatever we are doing.

When we were leaving the our doctor's appointment, we ran into two of our nurses, Amy and Trina. They were shocked about how good Natalie was looking and of course she had to show off a bit and small really big for them.

I love running into our nurses. I am glad we are out of the hospital, but I miss seeing all the encouraging faces every day. It is amazing about how you feel such a bound with your nurses...I guess that is what happens when they treat your baby like their own and watch over her when you can't be there.

We had another nurse over the other day to hang out, Aliana. She has likes to root the Hogs on with us. She was also my go to when I needed help with Natalie's NG tube right after we got out of the hospital.

So, Natalie had a wonderful Friday the 13th, however Carter on the other hand has the flu. That is right, the flu has hit our home. He does not have a horrible case, I guess that is because he got the flu mist and the H1N1 mist as well (or at least the first half).

He still has fever tonight, but is laying in bed watching Thomas the Train. The doctor said he should be better by Sunday, but I hate seeing him like this.

Poor guy, we told him he was not allowed to come out of his room since he was sick. I have also become a mad women with a lysol can...watch out. I have sprayed the house down three times today and washed just about everything that would fit into the washer.

Thanks for all the prayers on Natalie's weight, they are working so keep them coming. Also, please pray for Carter to get well soon and for the rest of our household to not catch the flu. We hope everyone has a wonderful weekend.

Something the Lord Made

Something the Lord Made is a movie that you should definitely watch. The movie tells the emotional true story of two men who defied the rules of their time to launch a medical revolution, by performing heart surgery on "blue babies". Basically these two men, Dr. Alfred Blalock and Viven Thomas, came up with the BT Shunt, which is what Natalie had done.

Natalie is doing wonderful, she is such a happy baby...I love it! We go back to the doctor this Friday, so we should get the results of her echo from last week and check on her weight.

Carter has been loving the weather, 70 degrees. We have spent a lot to time at the park on our tricycle and playing soccer.

Breast Cancer Awareness

The 3 Day Walk for Race for the Cure is in this weekend in Dallas. Wow, I can't tell you what it is like so see some many amazing men and women dressed in pink walking 20 miles a day for 3 days to raise awareness for breast cancer.

I am so inspired by these men and women. I saw one women pushing another women up a hill in a wheel chair. Everyone was dressed in crazy pink outfits having a ball as they walked. One guy was wearing his biking short and a pink tutu...it was great.

Okay, so I am thinking I would love to do this next year...is anyone in?

www.the3day.org

Echo Cardiogram

Natalie had her sedated echo cardiogram this morning. We had to stop feeding her a few hours before the procedure, but that did not seem to really bother her as long as she had her pacifier.

Natalie did great during the procedure. We have not heard about the results yet. The echo was a standard procedure done during normal check ups, she got sedated because of her age. Basically so she would stay still during all of the procedure.

She has not gained weight this past week again. We have an appointment with Dr. Zellers next week, so if she does not start gaining weight he said he has some tricks up his sleeve we can try.

Natalie has started holding her head up better. We have started putting her in the bumbo seat. She loves Baby Einstein and Carter now loves it again.

Great Halloween Weekend

We started our Halloween weekend with an appointment with Dr. Zellers. Natalie is now 9lbs 13oz. She gained weight, but not that much in the last week. I am not sure why, but we are going to try a few things differently this week and see what happens. Natalie is scheduled for an echocardiogram this next Friday, because of her age she will have to be sedated.

Larry and I got to have a date night on Friday night...first one in forever it seems like. Needless to say, we ended the night with food poisoning...probably will not be having another one for a while. Oh well, we both woke up feeling much better the next day. When Carter was about this same age, Larry and I got food poisoning on Valentines night...good think we do not want any more kids.

Larry and I took Carter, Trunk or Treat. Trunk or Treat was an event our church we have been going to put on. They had a bounce house, food and cars pulled up and were decorated for the kids to trick or treat. Carter had a blast! He woke up today and asked me if we could go Trick or Treating.

We hope everyone had a safe and fun Halloween. Please pray for Natalie this week to gain weight and do good with her sedation on Friday for the echo.

Scottish Rite

Natalie had a follow up appointment today at Scottish Rite for her feet; they thought she might have club feet when she was first born.

Her feet are looking better, but we still have some stretching to do a few times a day. I remember when we first went to Scottish Rite back in August. They told us they wanted to her for a follow up in 10 weeks. I thought 10 weeks sounds so far away...wow, time sure does fly.

They are going to monitor her for scoliosis as well. She is showing a few possible signs, because she huntches over a little. Now this could be, because she is just now starting to strengthen her neck muscles. Children's also has an xray that is showing a slight curve of her spine. There is also a possiblity of her developing scoliosis over time. The doctor said it is common for heart patients to develop scoliosis.

For now, Natalie is looking great! We go back in 2 months for another follow up appointment.

No More Feeding Tube

We finally took Natalie's feeding tube out Monday. Dr. Zellers told us Friday if she did good by the bottle for several days we could take it out. She had been pulling at the tube again and we were either going to have to remove it or re-tape it, which is a nightmare. We choose to remove it and she has done awesome!

Natalie finally had her 2 month well check up today...it is only a month late. According to their scale (every scale is different) she is 9lbs 12oz! She did great, but we did hurt her feelings when she got her shots.

Tomorrow we go back to Scottish Rite for a follow up appointment on her feet.

Boo at the Zoo

Natalie had her appointment with Dr. Zellers today. She is now 9lbs 11oz! She is slowly gaining weight. We are not sure when they will do the Glenn Shunt still, the doctors just want her to gain more weight for now.

A friend of mine that lives down here, Bre and I took Carter to the Fort Worth Zoo tonight for Boo at the Zoo. Boo at the Zoo is where kids can trick or treat at different stations around the zoo, carnival games and a pumpkin patch.

Carter was not so sure about everything at first, the costumes were overwhelming to him. We did learn he does not like clowns at all...I don't blame him.

He did not understand the concept of standing behind the line when tossing the bean bag into the ghost's mouth. He kept trying to walk all the way up to it and put it in; he just wanted it to go in so bad. He had a ball!

We put a few pictures from our adventure at the zoo. I added a few pictures of the pumpkin patch, because some of these pumpkins were amazing. Carter loved the spiderman themed one.

Thanks Bre for coming with us!

Psalm 16:8

Natalie is doing great! She has started taking more by bottle the last few days. She is so much more alert and has started trying to talk to the fan (something about babies and fans).

We have clinic tomorrow and an appointment with her doctor, so I will update more tomorrow night if not Saturday.

"I have set the Lord always before me. Because he is at my right hand, I will not be shaken" (Psalm 16:8). In the Hebrew, to "set the Lord before you" is to make him the point towards which you consistently direct your eyes and thoughts. When you do this, he is at your "right hand," constantly close to you.

"He alone is my rock and my salvation; he is my fortress, I will never be shaken" (Psalm 62:2)

Little Miss Grabby

Lets just say Natalie's motor skills are improving daily. She has managed to pull her feeding tube out twice. I had to learn to insert the feeding tube before I left the hospital, but I honestly was hoping to never have to do it again. Now I have done it twice and am hoping to not have to do it again. I think I taped it down pretty good this time, so we will see what happens.

Natalie is taking her bottle a little bit better, so that is good news. We still have a ways to go, but better is good. She is not really gaining weight, but not losing it either. She has not thrown up her feeding since Monday night, so I am hoping we are on good path now. We have a check up next Friday with Dr. Zeller's.

Carter had a small fight with the playground on Thursday and the playground won, so he now has a busted chin. The Fire Department came to Carter's school on Thursday and he had a blast.

He has been a great Big Brother, very concerned about his Baby Natalie. He lets us know when she cries that we need to put her pacificer back in.

Weekend Update

Natalie has been a little cranky these past few days. I am not sure if it the fact we are on our final doses of methadone, which we have been trying to wean her off for a few weeks now or what. She sleeps a lot and when she is not asleep she likes to be held...spoiled.

Carter is back with us from his week with Gran and Papa. He looked at Natalie for a bit and then has just ignored since. He did try to get in my lap a minute ago with the boppy and lay like a baby. We asked if he was a baby and he cried like one for a minute and then laughed...what are we in for.

Overall things are okay. Please pray for Natalie to start taking her bottle better so we can get the feeding tube out sooner.

9lbs 10oz

Natalie had a check up today for post surgery. She is now 9lbs 10oz! She is just getting bigger everyday. She is doing great for the most part. We are still working on taking the bottle versus the feeding tube. She now takes at least 20cc each time and some feedings she will do more, but normally she hits a wall after 20 cc and won't take anymore.

43 Days Later

43 Days Later, but we are finally out of the hospital! We got the okay at 9am, however did not actually leave until 4pm. We had to wait on Home Healthcare and Pharmacy before we could leave.

Natalie is doing great so far. Believe it or not, but she actually took her entire bottle by mouth tonight...she has not done this in over 3 weeks. I am hoping she continues on this good path, but who knows.

Thank you all for your constant prayers and support. We are so blessed!

Natalie at 11 Weeks and Fall Fun for Carter

Natalie's tummy trouble is much better today. She has been a sleepy girl and slept a lot. Here are a few pictures of her at 11 weeks old...time flies.

Larry's parents were in town this past weekend and took Carter to a fall Farmer's Market. I have put a few photos they took of him there and at the park.

Tummy Trouble

Natalie is having a bit of tummy trouble the last few days. The doctors upped her calorie intake, which in return has caused her to get a bit constipated. We plan on fixing that problem this weekend with some medicine.

I also put her NG tube in again last night. Yeah, I am done with that! Now, I just hope she does not pull it out while we are home, but I do know how to put it back in if necessary.

Yes, I am saying this but pray I do not jinks myself...We are shooting for leaving the hospital first of next week! I am so excited to get her out of here for a few months at least. Now, we will be back weekly for check-ups and clinic, but hey a few hours once a week is fine.

NG Tube Insertion

To be able to leave the hospital with Natalie, we have to learn her medications and how to feed her via NG (Nasogastric) Tube (feeding tube). She gets tired during her feeds, so we give her what she will take by mouth and put the rest in her NG Tube.

Since she will be leaving the hospital with the NG Tube, I had to learn how to insert it into her nose. I just decided the best way to do it was to dive in and go for it. I practiced a few times on a fake baby and then did it Natalie...successful!

Since I have accomplished that, the doctors are preparing us to leave the hospital first of next week, hopefully. Can you believe after 6 weeks in the hospital we might be leaving?

Blessed

Natalie got her sutures out yesterday. She is looking better every day. We are still working on her taking everything by bottle versus the feeding tube.

We have start learning how to use the feeding tube just in case we leave the hospital with it. They are getting were they want us to do everything, which is good...one step closer to leaving the hospital until next surgery.

God has blessed us with Natalie and given us a miracle with this past surgery being so successful. Thank you all for your constant prayers and support, Larry and I feel so overwhelmed with your blessings.

Happy Girl

1 Corinthians 13:7

"Love bears all things, believes all things, hopes all things, endures all things"

Natalie is doing amazing! We got everything lined out the other day. She was having withdrawals from a medication, they just weaned her a little too fast. They put her back on it and we are starting the weaning process again. Since getting everything lined out, she is like a new child. She smiled yesterday afternoon for the first time in a week!

The goal now is to get her back to feeding on a bottle versus the feeding tube. She is doing okay, she just gets tired really quickly. Once we get the bottle down better, I think we might get to leave the hospital. Yes, I did say leave the hospital...not Amarillo, but that is okay with me for now. I think we will be in the Dallas area at least until after her next surgery, which should be in December or January.

Carter is doing much better as well. He is still a little congested, but nothing major. We got some more train tracks for his little Geo Trex Trains and man, he loves it. I have to recommend to all you moms who have small boys, this is the gift to get. You can add to them and they do have Cars (the movie) themed ones. We are obsessed with Cars and Thomas the Train. Hey, I can handle that, I am just glad I have not had to watch the Wiggles in almost a month.

Matthew 17:20

"For truly, I say to you, if you have faith like a grain of mustard seed,

you will say to this mountain, "Move from here to there, and

it will move, and nothing will be impossible for you"

8th Floor

Natalie moved up to the 8th floor yesterday! This is a huge step for us. She is off oxygen all together and looks so much better without of the tubes on her face. She still has the feeding tube, but we are slowly working on her feeding by bottle again.

She has been a bit cranky the last night and today. We think she is either in a pain from her incision or her formula is upsetting her tummy. I hope we can get that figured out soon, because a cranky baby is no fun for anyone. On a positive side, her stats do not drop when she is screaming so that is good.

We miss all our ICU nurses already! We will see you all again in December for the Glenn Shunt, but come upstairs and see this next week if you are working.

Phil 4:6-7

Phil 4:6-7

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpassed all comprehension, will guard your hearts and your minds in Christ Jesus"

Natalie is still doing amazing! She got a few of her lines removed yesterday and should get the rest removed today. There is talk about her possibly moving up to the 8th floor, the cardiac floor...this is huge!! Natalie doing better than anyone ever thought should would.

I get the impression from talking to people and looking back on the day of her surgery, that everyone was nervous. When Larry and I showed up that morning, several nurses came in and hug us and told us they were praying for us. I told Larry after thinking back and seeing everyone's faces, I am starting to think they were not sure how she would do in surgery. She had the BT Shunt surgery once before and did not tolerate it, which had never happened before and they were about to re-attempt it. Gosh, how overwhelming.

God does answer prayers, it is in his perfect time though. I think Natalie has shown everyone that she is a fighter and has God in her corner.

Breathing Tube is Out

Natalie got her breathing tube out yesterday. She is still on oxygen, but it is a step in the right direction. Dr. Forbess came by yesterday and did not like the position of her PICC, so they removed it as well.

Her stats are amazing! She got to eat briefly last night via feeding tube. They stopped her feedings early this morning. The doctors are hoping to pull some of her lines out and to do so she needs to have not eaten 4 hours prior.

She is still pretty sleepy, but is a little more awake this morning. She has her head titled again looking that the monitors; she loves the lights. I keep telling her to enjoy the lights, but we do not need the numbers to flash or any alarms going off.

We took Carter to the doctor yesterday. He just has the common cold. He did get the flu midst while we were there, so that was good.

Pink is In

Natalie's new favorite color is pink! Before her surgery her skin tone looked a bluish-purple due to the lack of oxygen. She is now pink and looks amazing. Her stats are in the high 80s and she has done awesome since her surgery.

Her xray this morning showed a little haze in one of her lungs, this is not uncommon and happened after her last surgery. They are doing some treatments to clear it up. She is still sedated, but they are slowly weaning her off the medicine and her breathing tube.

Thank you all for your support and prayers yesterday, the surgery was successful! We still have along road ahead of us. The surgery was only to by us time until either the Glenn Shunt or a heart transplant. I have so many questions for the doctors, but I realize most of them will not be answered for another two months or so and I am actually okay with that for now. The fact that she has time, works for me.

I will explain more later about the transplant and the glenn shunt procedures, but I am off to take Carter to the doctor now. Yes, my sweet other child is sick. We found a pediatrician here that was recommended to us. I think he has allergies, but with everything going on, we want to be safe.

Yeah!

I really want to scream with joy, but I am not sure if that is allowed in the hospital. Dr. Forbess said she is doing awesome! We still have a road ahead of us, but we crossed a major bridge today. He is hoping to get her off the breathing machine tomorrow sometime, as well.

Thank you all for your support and prayers!

I will post later tonight on how she is doing.

Praise God

We just got another update...Natalie is off bypass and the shunt is in. Her stats are in the 80s and she is doing awesome! The nurse said this is better than expected...thank you, Lord. They are still finishing up with some things and have to still close her up. I will update after the surgeon comes out to talk to us.

Thank you to all of our prayer warriors! We are overwhelmed by the amount of support everyone has shown us.

Second Update

Just got another update...Natalie is doing good. She is currently on bypass and Dr. Forbess is sewing the shunt in. Please pray that she tolerates the shunt this time.

Surgery Update

We just got our first call from the OR. It took them a little while to get an iv started, but that is nothing new. Dr. Forbess started a little after 9am. Natalie is doing great right now. I will continue to update.

Natalie is in Surgery

Life threw us another curve ball this morning. We got a phone call from the hospital at 5am, our nurse told us Natalie had been having a horrible night and they had been in contact with her doctors. Then, 40 minutes later we got another call...Dr. Forbess said it was go time. Larry and I got dressed and headed up here to the hospital.

I did get to hold her briefly. She went into surgery like any stylish girl should...a bow on her hat.

Dr. Forbess will be re-attempting the shunt and a with changes. I will continue to keep you updated as we get updates from the operating team.

Officially Listed for a Heart Transplant

Natalie has progressively gotten worse over the past few days. She has these episodes where her oxygen level drops to an extremely low number. She normally recovers from them on her own, but it takes her a lot time. Her VSD is closing, which the doctors want. With her VSD closing, she is starting to show a bluish tint to her. I keep telling her blue and purple are not her friends, but she just looks at me and smiles.

The doctors feel our best option right now is to be listed for transplant. She is listed as status 1A, this is the top status. They list children under 6 months of age at this level. She can also get a heart with different blood type then hers, so that is positive. I have no idea how long it will take for her to get a heart. The doctors are prepared to do surgery if needed in the mean time. One day at a time, though.

I am not going to lie, I am terrified. I have to keep telling myself at least we have an option and we are blessed with the amount of support we have. I know God has a plan for her and we will get through this part. We still have a long road with transplant that will continue the rest of her life.

It is also hard to ask you all to pray for a heart, because for a heart to become available, someone has to lose a loved one...a baby. I feel selfish asking God for that. I pray that by miracle everything works out someone and she does not have to have a transplant. I have so many emotions going through my body right now.

A little about the transplant...

The first year after a transplant, a patient is normally on 20 different medications. Now, this does go down dramatically after the first year, but she will always be on medication the rest of her life. We will have to be so careful with her. If she gets a small fever, she will wind up in the hospital were as Carter we just give him Motrin.

The transplant coordinator is setting me up with a family next week who under went a transplant on an infant as well. It will be nice to visit with someone. I am not sure what I am going to ask, because I am just blank right now.

Natalie is a fighter, she has proven that to us over and over again. The other day she pulled her feeding tube out...how I have no idea. Then she was mad, because she did not get fed for 45 minutes until they got it situated again. We try to get her swaddled with her hands down to her side, because if not she will get a hand swinging and grab whatever she can.

I will post more tomorrow about the transplant process, but for now I just wanted to post something since it has been a few days. We had a lot of family and friends in town this weekend, so I did not have time to post.

Thank you all again for your prayers and support

Two Months Old

Natalie is two months! I can't believe how time flies, when you constantly forget what day of the week it is.

Natalie is doing pretty good today. The doctors decided to only feed her via feeding tube. She is starting to show signs of reflux and when she gets mad or upset, her stats drop. We are trying to keep her calm and continue to keep her stable, so feeding her by mouth has become a challenge. She takes the bottles great, it is just afterwards. The feeding tube takes the breastmilk all the way to her tummy so is bypasses her getting reflux, spitting and helps the gas. The downside to the feeding tube is she full most of the time so she sleeps more.

I finished talking to all the numerous people on the transplant team today...wow, I feel like I have just had a major interview almost. They really want you to understand everything and every aspect of the transplant before, during and after so it is a lot to take in all at once.

Natalie will not be listed right away, as we still have the option of surgery. We are still going day to day and will be that way for now on.

Please pray for Natalie to stay stable and continue to grow. I also ask that you pray for my little man, Carter. I can't image what he is going through and what he must think. We have been trying to have some sort of a normal lifestyle for him, but he had a small break down this afternoon. He wanted to go to Carter's House and when we pulled up at the townhouse, he lost it.

No Surgery After All

We had a turn of events last night to say the least. At 1:30 in the morning, one of the Attendings came in and asked me if I had heard the about the "Big Debate". Dr. Forbess could not justify doing surgery on Natalie today, because her stats were awesome all yesterday afternoon. The doctors just finished doing surgery rounds this morning and confirmed, Natalie does not need surgery today! Her stats are were they would be after the shunt, so why do a procedure when she looks so good. Now, this could all change tomorrow. We will be living day by day, but at least it is one more day without surgery!

They are going to go ahead and put a PICC in this morning. A PICC is a more central IV that will last longer than a few days.

Natalie has continued to shock us all. She is a fighter that is foresure! Larry and I will have our hands full as she gets older and Carter better watch out, because she is going to be one tough cookie. She is going to be the girl in the princess dress playing cars with her brother.

Thank you all again for your constant support and prayers for my family. We feel so blessed to have such an incredible support team through all of this.

Surgery in the Morning

Yes, that is right...Natalie is having surgery tomorrow (Tuesday) at 7:30am. Her stats keep dropping and got to an extremely low level Sunday night. The doctors did an echo on her today and the results are showing her VDS(ventricular septal defect) almost closed. This is a hole between the bottom two chambers of her heart; this hole is necessary for her to survive until surgery.

Now, they attempted the BT Shunt (Blalock Taussig Shunt) about three weeks ago and Natalie would not tolerate the shunt, so they removed it. They will be re-attempting the BT Shunt tomorrow. Dr. Forbess seemed very positive about the procedure. There are a few new things different this time:

1. He has been in her heart before so he knows his way round
2. Last time her stats where much higher than now
3. Her VSD was a lot larger

To refresh your memory and so you do not have to look back at the previous blogs...The BT Shunt is a small tube that connects the aorta to the branch pulmonary artery. The shunt allows blood to flow to the lungs.

I will keep everyone updated like last time on the progress of her surgery.

I also met with the transplant team this afternoon. Now, a heart transplant is a last option, this is when we have no other options. Natalie is not officially on the transplant list. We will start the evaluation period, which takes about a week. The evaluation period is when they run a battery of tests, such as MRI, Echo, EKG, blood work, etc. Now she has done some of these already, so we will not have to repeat all of them.

Once the evaluation period is complete, we will then see how this surgery goes and figure out if she has any other options or not. The transplant team is wonderful! Everyone at Children's is great, they really sit down with you and make sure you understand everything, which I am sure is a challenge talking to me sometimes. I have had people explain things to me over and over again (bless them all), but they never seem to mind.

I would like to ask everyone to say a pray tomorrow for Natalie and the team of surgeons.

Natalie's Options as of Today

One of the many doctors on Natalie's team came by Friday morning to visit us and tell us what the plan for now is. Okay so here is the deal...

Natalie is not having any more test run for now. They were going to go ahead with the CT Angiogram when she had the breathing tube, however she removed it the other night. There are a few reasons why they want to wait all based on the fact they are uncertain they can get the picture they want:

1. They would have to re-put the breathing tube back in and sedate her again
2. To take her to Parkland Hospital is a huge ordeal to not be certain of the outcome
3. The uncertainty of being off site even though it is attached to Children's

They are talking with Parkland and other doctors to figure out a solution on how to get a picture of the left coronary artery. The left coronary artery is the problem. They have not been able to see it in the other tests, so they are assuming it is extremely small. This is probably why the BT Shunt did not work the first time. An MRI is normally the best way to get an image of the left coronary artery, but that did not work with Natalie (problem child already). When they are able to get the image they want, then they will either confirm their options, have more options or narrow down the options.

Here are the options for now, they are still trying to come up with other options as well:

Option 1

Tuning up...To go back in with the BT shunt and widen the left coronary artery. Both of these procedures by themselves are extremely risky and to add them together makes it worse. Also, they are uncertain if she would even tolerate it after the experience last time. This is basically the last option for now...if she will not hold off for the other two options.

Option 2

Try to hold her off for the Glenn Shunt, roughly about two months or so. The Glenn Shunt and Fountan (procedure after Glenn, about 3 to 4 years of age) are procedures that to not fix her problem, but by her time before a heart transplant. Now that could be 50 years or 5 years, who knows. There is still a risk she might not tolerate the Glenn, however there is that risk with all these procedures and options.

Option 3

Heart Transplant (this is the back up-back up option)...I am going to talk with the transplant team this afternoon. We are going ahead and putting her on the list. For a baby her size, it roughly takes about 2 months, which is the same length of time as the Glenn waiting period. Now this could be sooner or longer, who knows. The reason for the heart transplant list, is they do not want to get another month down the road and realize this is our only option and then have to wait another few months to get further on list. The risk with a heart transplant is right typing, her not rejecting it, etc. A heart transplant could last 2 years or 10+...we just do not know.

I am a bit overwhelmed right now, but I just feel blessed we still have options at this point. They did not come in and say we are sorry there is nothing we can do, so that is good news.

The doctors and nurses have been great the last few days. They have really set down with me and explained everything a bit more. I actually think I finally understand her condition and the various options, the levels of risk of each and the outcomes.

So for right now, she will be staying in ICU to be monitored and to grow. Yes, I know that is another couple of months in the hospital. We have been joking around that ICU is the concierge floor, because there is one nurse to two patients. I think or should I say I know Natalie is going to be high maintenance, but who can blame her with all she has and will go through.

Natalie has had a few major eposides in the last 24 hours. When I say eposides, I mean her oxygen level dropping to an extremely low level. She now being fed only by her feeding tube. She seems to sometimes get irrated when fed by mouth and when she get irrated her stats drop. They did an echo on her earlier this morning and we are still waiting for the official results. We should know more this afternoon.

For me the hardest part is learning to balance my time between Natalie and Carter. I feel guilty when I am at the hospital and not with Carter and vise versa. I know both of my children are too young to remember any of this. I just sometimes wish I would not remember it either, but I know there is a reason for all of this. I am just going to hold on to the wheel and continue to let God drive.

I know this a lot to take in, so if any does have questions, please feel free to call or email me...I may not pick up right away but I will call back. I can not use my cell phone in ICU, but I can email.

I would like to ask everyone to be praying for the doctors to find a way to get the image they need of her left coronary artery, this will help us proceed better and for Natalie to continue to behave with her stats.

Nights and Days

Miss Natalie once again has her nights and days mixed up. Currently it is 12:30am and she is wide awake and happy. I guess that is what happens when they sedate you for several days. Oh well, we will get back on the right track again eventually.

Thursday was a pretty none eventful day, which was nice. She did get another IV put in. She is also getting to eat again. She is up to 2oz by mouth and they do the rest by feeding tube. She loves to eat, so I am not worried about get her back up to 4oz.

Since Natalie was doing so good on Thursday and not having any procedures, I took the opportunity to hang out with Carter. Carter had a great first week of school. We were blessed with finding a church in Coppell. He was a bit hesitant on the first day, but loved it once he started playing. This is his third school in the last few months. Poor kid has been bounced around way too much this summer, but he has surprisingly done amazing. I am just so happy to have him with me now. I missed the little guy this summer, though he is not so little anymore.

For now, they decide not to do the CT Angiogram and the Transesophegeal Echo. Dr. Forbess is not sure what he will gain from either of those at this time. They would have to re-sedate her and put the breathing tube back in. I think they were going ahead and going to run the tests when she still had the breathing tube, just so they had them for the future. However since she pulled the tube out last night, I think they decided to wait. Now that is my personal opinion, so who really knows.

I should find more out in Rounds later this morning on the plan.

More Tests

Natalie's MRI went good, however they were not able to see the artery they were wanting to see. The plan is do a CT Angiogram and Transesophegeal Echo tomorrow. I am hoping after tomorrow we should have a final plan or at least something to go by. I asked the nurse if there were any other tests possible they could run; after tomorrow we will have had all of them.

I can honestly say Natalie is a fighter. I just witnessed her remove the breathing tube that was taped to her face and down her throat. I never knew a baby could to that, but she tilted her head the perfect way. She wanted that tube out and they were not taking it so, she did it for them...feisty

She really wanted to make sure everyone was on their toes during the evening shift...the nurses did awesome by the way.

She is now stable and sleeping.

Patience

Natalie is not getting off the breathing tube tonight, like we had hoped...she is stable though. Her little eyes opened up a minute ago and looked at me with sadness in them. I wish I could take this all away from her.

They are going to insert a PICC into her arm or leg later tonight. A PICC is an IV that is a more central line that will be used for fluids and medications. Natalie is considered a hard stick; they have trouble with IVs. She has her MRI tomorrow morning sometime as well.

I starting thinking...Natalie will be 8 weeks old on Thursday. She has spent more than half of her life so far either in the hospital or at the hospital for a doctor's visit. As a parent it is hard to watch your child go through something and not be able to do anything about it. I know Natalie's condition is a bit extreme, but I think every parent goes through times in their life when they wish they could take their child's pain way, no matter how big or small it might be...everything is important. The one thing Larry and I have learned is that you never know what someone might be going through, even if they do not show it on the outside.

I have mentioned from time to time, that I totally think God is working on me. I am a patient person or at least I thought I was until all of this. It has been so hard for me to not have a plan. I was so ready for her heart cath today so we could get a plan of action. I had to wait 3 days for the cath and now I am waiting for the actual plan. Okay God, I am getting the point (Your timing, not mine)!

Natalie is already a miracle and we will get through this rough road we are on. Our road may seem difficult, but I know everyone has a road they are on or will be on someday. The bible doesn't say if in times of trial, but when (James 1:2-3)

A friend of mine send me this devotional from Rick Warren the other day and I wanted to share it with everyone.

September 3, 2009

Having Patience in the Midst of Discouragement
by Rick Warren

“You need to persevere so that when you have done the will of God, you will receive what he has promised. For in just a very little while, ‘He who is coming will come and will not delay’” (Hebrews 10:36–37 NIV).

If you’re discouraged because of God’s delay in answering your prayers, understand the delay is not a denial. Just because the answer or the miracle hasn’t come—yet—that doesn’t mean God isn’t going to answer, or that he’s forgotten you, or that he doesn’t care about you. It simply means “not yet!”

Spiritual maturity is knowing the difference between “No” and “Not yet,” between a denial and a delay. The Bible tells us, “He who is coming will come and will not delay” (Hebrews 10:37 NIV).

The delay may be a test of your patience. Anybody can be patient once. And, anybody can be patient twice. And, just about anybody can be patient three times. So God tests you patience over and over and over.

Why? To see how patient you are?

No, he does it to show you how patient you are. So you’ll know what’s inside of you, and you’ll be able to know your level of commitment. God tests you so that you can know he is faithful, even if the answers you seek are delayed.

If you’re discouraged, turn it around by remembering God teaches you patience during delay. Ask him to transform your discouragement into patience.

You may be going through difficult times right now and feel like dropping off the planet. You’re discouraged because the situation you face seems unmanageable, unreasonable, or unfair.

It may seem unbearable and inside you’re basically saying, “God, I can’t take it anymore. I just can’t take it anymore!”

But you can.

You can stay with it longer because God is with you. He’ll enable you to press on. Remember, you are never a failure until you quit.

Don’t quit. Resist discouragement and finish the race God has set before you.

Heart Cath

Natalie had her heart cath today. She did great during the actual procedure, however after the procedure was over her stats dropped again. She is back on a breathing tube and is stable for the most part. The plan is to slowly wean her off the breathing tube tonight. She is also getting blood, because her hemoglobin's are low.

Dr. Zellers got the information he needed from the heart cath, which is great news. However, they are still not sure on the course of action we will take. Natalie is schedule for an MRI tonight or tomorrow. Dr. Forbess, the surgeon wants all the information he can have to make the best plan for Natalie.

Natalie will be having another heart surgery probably this week. The doctors have surgery conference tomorrow (this is done once a week) and she is on the list to be discussed.

We might not know anything until after this surgery conference, so tomorrow night or possibly Thursday morning. I will let everyone know when we find something out.

Thank you all for your prayers today...

Back in ICU

Natalie got moved back to ICU today. Her oxygen levels keep lowering. The doctors have moved up her heart cath to tomorrow. We will hopefully hear back tomorrow night on the heart cath and have a plan of action, but it might not be until Wednesday.

Please say a little prayer for her tomorrow, that everything goes well and the doctors get the information they need.

Oxygen Levels Down

Natalie's oxygen levels have lowered more, so they upped her oxygen. She is scheduled for a heart cath on Wednesday.

Wild Few Days

Well, we got moved into our new townhouse yesterday. Three floors, with a room on every floor, I guess that is why my legs are sore today (sad, I know). Carter is getting the hang of it as well. He went face first down a few steps yesterday and today, but we only have one black eye so we are still good. He has now learned how to watch where he is going and hold onto the railing. You have to love a two year old!

Sweet Natalie...she is back on oxygen. When she sleeps soundly (which every parent desires and wants), her oxygen drops to where they doctors and nurses are not comfortable. Since this is happening to her, they are scheduling a heart cath next week. A heart cath is a small procedure where the doctor make a small incision and insert a camera with dye to measure and see all of her heart. We should get a better understanding of what is going on with her. On that note, the doctors will not be discharging us from the hospital until they figure out what is going on.

We hope everyone has a safe and wonderful Labor Day Weekend!

Busy Night

Natalie had a busy night last night. Her oxygen levels were all over the place and dropped lower then what they would like at one point, so she was put back on oxygen. She then had blood work done, which they had to redo and had an EKG. She did get her IV removed at midnight, because the nurse came in to flush it and realized it was bad...Natalie lucked out. She likes to stick her fingers in her mouth and since the IV tube was wrapped to them, she was trying to suck on the tube.

She is doing wonderful right now and is sound asleep. They took her back off oxygen, because her levels were stabilize again. We also got to lower her calcium supplement intake, because her labs came back good for that. I am learning to give medicine like a pro.

New Room

Natalie is out of ICU! We finally got moved to the 8th floor, which is the cardiac floor. We will be here for a few days. They will basically continue monitoring her and make sure she is eating good before we can leave.

I had a great opportunity today to help demonstrate the "Virtual Crib" to some donors here at Children's. The hospital is trying to improve the virtual crib and have more of them for every room in the ICU. If you do not remember, the virtual crib is where they set a web camera in Natalie's room and I had a web camera at Baylor. I was able to see Natalie and ask questions. When I used the virtual crib you could not talk back and forth to one another, only type. The hospital is trying to get it where you can actually talk back and forth, so the mother can get a better update on what is happening. I can't say enough about how amazing the virtual crib was and comforting as a mother separated from her baby.

Cardi Dog

We had to put our dog, Cardi to sleep today. She has progressively gone down hill over the past several months. She start having seizures every hour and we just felt it was best for her. I know she is not in pain anymore and is up in Heaven with Pappy playing.

I got Cardi 12 years ago. She has been the best dog ever! Carter loved Cardi and she was amazing with him. I think some days Cardi did not care so much for Carter, but they had an understanding...Carter climbed all over Cardi and in return, Carter gave Cardi cheerios and goldfish. We will miss her...

Walk By Faith

I was sitting in bed last night listening to the Jeremy Camp song, "Walk By Faith." Wow! I feel like he stepped into my life and thought about us and others who have been in tough situations where you have to have total faith in God, because you have no idea what to expect from day to day.

Just think a week ago Natalie had heart surgery. I remember when our doctor game out and told us the surgery did not work and they were going to remove the BT Shunt, because if they left it in she would probably not make it through the night. God was totally with Larry and I at that moment, because in our minds Natalie was alive and going to be okay. Who cares if we have to move to Dallas for a while, our daughter is alive and whatever comes our way we can handle it with God, our family and our friends.

I wish I had taken a picture, but at the time it did not cross my mind for obvious reasons. They brought us to a hallway after surgery where we could see her as the surgical team brought her into the ICU. I remember looking down the empty hallway waiting for my baby girl. Then, it was like a team of Angels that turned the corner with her bed bringing her down the hallway. I can't tell you how overwhelming of an experience that is, to see this surgical team (Angels) walking on either side of your baby girl bringing her back to you. God is amazing!

Natalie is doing better every day. She just took 4oz! She also got her arterial line out and her feeding tube. She is like a new women! She is currently sitting in her Gigi's lap, happy as she can be. We are still waiting on a bed on the 8th floor, but that is okay. We love our nurses in ICU and do not mind waiting.

The Sweetest Big Brother Ever

Natalie is finally starting to eat better. She is now back up to around 3oz! They were going to move her to the 8th floor today, however there are no open beds, so we will be in ICU for another day at least...no worries.

Carter was so cute last night...he wanted me to lay down with him for bedtime, but I told him I had to go back to the hospital to be with Natalie. He gave me a big kiss and told me to give it Baby Natalie. What an awesome Big Brother!

Cuddling My Baby Girl

I got to hold Natalie today! She looked up at me with a big smile and I got to hug my little man as well...life is good.

Natalie got her central lines out today, so we are now able to hold her again. She is still not eating great. She is taking only about an ounce and half by bottle. We then give her another half ounce through the feeding tube.

Larry's parents brought Carter back to Dallas today. He was so cute and excited to see mommy and daddy. He asked where Natalie was...he was a cute big brother.

Feeding Tube

Natalie got a feeding tube this afternoon. She just wasn't able to eat the way they want her to. I use to think the feeding tube would be a bad deal, however I have a new light on it. Yes, the feeding tube means she is not eating very well, but with the tube, she is getting what she needs. We start trying to feed her by mouth first and what she doesn't take by mouth, then we put it in her feeding tube. Tomorrow we are going to start adding calories to her bottles by adding powder formula in with the breast milk. The goal is to put on the baby fat so she will be ready for the next surgery.

She also is going to get her central lines out tomorrow morning, so I can hold her again! I think she will start doing much better once she can cuddle with mommy again.

She will also be able to wear clothes again. The nurses up here are so funny about making sure the babies are all dressed up or have cute blankets they lay on. Natalie currently is sporting a blue bow. I could care less if she has a bow on, but the nurses do, so I let them have their fun with her. The staff here is incredible!

Hiccups Stink

Natalie got to eat last night. She did okay, but I think it will be a slow process. We tried again early this morning and she did not take it so well. The problem with heart babies, is they get tired very easily so they fall asleep during feedings. Personally I think when we can hold her to give her a bottle she will do much better...not sure when that will be though. If she ends up not eating very good again (which is common), then they will put a feeding tube in to help.

I did get to hold her for a few seconds yesterday when they moved her to a small bed. I am so ready to cuddle with my baby girl again.

She got the hiccups early this morning; it was the first time I heard a cry. I know it had to be painful with that incision. The look in her eyes was horrible. I hate not being able to do anything or even explain what happened to her. Bless her!

The plan for today is to get her to eat better or put the feeding tube in. Tomorrow she should get more of her lines and ivs out. Then either tomorrow or maybe the next day, we can move up to the 8th floor (this is the cardiac floor where we learn to take care of her wound, give her medicine and feed her if she has a feeding tube).

I have had several people ask about the heart transplant patient. She is doing good as far as I know. The nurses can't really tell you anything about our patients. However, she did get moved to the 8th floor, which is great news! Now, they said with most heart transplant patients move quickly from ICU to the 8th floor, but are on the 8th floor for a while.

We did get a place to live down here until her next surgery. Thank you to everyone who has been helping us figure that out.

Wide Awake

Natalie is wide awake today! She looks a bit mad, but who wouldn't be with all she has gone through. She did get her breathing tube out a few minutes ago. She looks so much better today, the swelling has gone down even more. She got her draining tube out and another line that was in her stomach.

The nurses are going to move her to a smaller bed here in a little while. Her room is freezing, so she is having a hard time staying warm. They will move her to a smaller bed with a heat warmer on it to help her stay warm.

We are on our way to getting better and out of ICU.

Sleepy Girl

They stopped her pain medicine today. She is not in pain, but if she starts to show discomfort they will give her something. The goal is to try and make her more alert today and to get the swelling to go down some. She did squeeze my finger a mintue ago and is starting to think about opening her eyes some. I do not think they will remove the breathing tube today, but hopefully tomorrow. She likes to suck on the breathing tube like it is her pacifier...pretty cute under the circumstances.

Natalie's neighbor in the ICU is a 12 year old girl who had a heart transplant last night. The little girl had been waiting a while. Children's Medical Center currently has 18 on their heart transplant list; this is the most they have ever had. I just wanted to ask for everyone to say a little pray for this girl; that she remains stable and is able to have a long and healthy life with her new heart. I would also like to ask you to pray for the family who donated the heart. What a hard decision to make in a time of grief.

Carter is in Texarkana with Larry's parents. Larry's mom got him in Mother's Day Out at their church. He loved it! He is having a wonderful time with his Gran and Papa.