Poor Sick Little Girl

Poor Thing

Natalie's Coloring
Now I know I am pale, but that is still scary

My weekend continued as crazy as my week. Natalie has stopped running fever and throwing up, but she continues to be extremely tired. Saturday, Natalie woke up and her coloring is way off. Now, she always has a little bit of purplish-blue, but she was a lot darker shade. I guess, I had a freak out moment for a while (probably not my last either).

I called our pediatrician, Dr. Scott, because I knew she was on-call this weekend. You know you have freaked out the on call service when the immediately route you to the doctor's office versus leaving a message for the nurse and then having them call you back.

We brought her right in and Dr. Scott checked her out again. Natalie's oxygen is still awesome for her, around 87. Everything seemed okay, her coloring was just off a bit. We decided she still had a bit of virus and we needed to make sure to stay on the antibiotic for all of 10 days.

The remainder of Saturday and Sunday were off and on good and bad. Natalie threw up a few more times and was just tired and cranky. Poor thing would just lay down on the floor, she did not care where she was.

I ended up calling the pediatric cardiologist here in town today, Dr. Luckstead. I talked to Luckstead's nurse Lana. She reminded me that cardiac kids tend to take twice as long to recover from an illness versus a healthy kid. She also said that if Natalie has been on antibiotic she might be having some tummy issues (which we are, that just goes along with an antibiotic sometimes) and that sometimes means all her blood is flowing more to that area to help fight the virus leaving her extremities with less blood flow...aka the purplish I am seeing.

If Natalie is not better by Wednesday, I will call back. She had a period late this afternoon were she seemed like her old self, so I am praying we are on the mends. Carter has been so sweet the last few days. He keeps kissing Natalie telling her he hopes she feels better.

On a sad different note, Amarillo had nasty winds yesterday. I am talking about 6o+mph, blowing dust and well, it is way too dry here. There were several wild fires all around the Texas Panhandle. The news is saying 110,000 acres were burnt; 70 homes and a few businesses were all burnt to the ground. One of the business was a dog kennel and they were not able to save all the poor animals, because the fires were just going so fast.

We have a few friends and family that live in some of the areas. They were all blessed with their homes being safe. However, several people were not so lucky. I want to ask everyone to say an extra prayer for these families who lost their homes and/or pets. Also for the wonderful firemen and women who helped battle these fires.

I saw a firemen walking in the grocery store tonight. He looked liked he had been run over, he seemed so tired. I just feel so blessed we have such amazing men and women out there in all professions that lay there life down for us daily so we can be safe...thank you to all of these men and women, they are truly our heroes!

Fast Forward Please

I have heard people ask for a mulligan or a wish for a redo on a day. Well, I am asking for a fast forward button so I can have this week over. It has not been a bad week, because I know it could be 100% worse, but I am just ready for it to be over.

Lets start with the beginning of the week, Monday. I have always heard that even if you have an old cell phone that is not active, it can still call 911 (see where this is going). We had an old pink cell phone (I think knowing it is pink makes it a little better to me), which I thought the battery was dead. My two angels were downstairs suppose to be watching Mickey Mouse, while I called my insurance company (story soon). Carter comes busting in the room with the phone and a women's voice coming out the other end. I quickly hung up on the insurance company, which I had been going through the misery of pushing buttons to get to the right division only to have to hang up. I knew what had happened when Carter came in. I explained that we did not have an emergency and how deeply sorry I was that my children were playing with a phone and that it would never happen again unless it was a real emergency.

I then took the battery out of the phone and placed in the dumpster. I also realized this was a good time to start talking about 911 to Carter. I think Carter is getting the idea, but not completely yet. I am just going to pray I am not home with him by myself unconscious until he fully understands, because right now, he is first going to find the battery and put it back in his pink phone so he can then call 911 to get me help if there was an emergency. We are getting the idea, but I might have major issues if he searches for that battery before finding another phone.

Back to the insurance company. I am sorry if you are reading this and working for a health insurance company. I do not have a problem with you all of the time.

My health insurance company decided after a 4 months of covering Natalie's synagis shot (RSV prevention), that they did not need to anymore. I know it is a new year and a new deductible, but these shots are not cheep at all. One shot should have covered our deductible, but for some reason they denied us. After one hour of talking to my pediatrician's office (Melissa, you rock), CVS Caremark (where we get the shot) and the insurance company, I think it is all cleared up. Of course, they told me it would take 5 to 1o business days to show on my account, so we will see in a few more days if they are really got it cleared up or not.

Oh, Monday is not over yet, so stay seated.

Carter's teacher calls me; what I have always feared. She said Carter is not being mean, but just won't keep his hands to himself. I know exactly what she is talking about it, because I see it with they way he deals with Natalie and his close friends. He is not being mean, but just touches people on the back or shoulder for some reason. I then spent the next several minutes talking to Carter about keeping our hands to ourselves at all times. I thought we were getting it...I thought.

Tuesday actually went off with no problem or at least none that I can remember, which is a good thing. I even made it to the gym for the first time in 3 weeks!

Wednesday was not a bad start, but Natalie seemed a bit off. She was not really eating, but I just thought she was tired. She kept laying down on the floor, so I just put her down for an early nap. I then actually did a little work out video and finished laundry. I thought the day was going pretty good for the most part, when the phone rang.

Carter's school was on the phone. Lets just say, the playground won. Carter fell and has a black eye and a busted nose. Ms. Denise felt so bad. I told not to worry, because trust me this was not the first black eye. Carter is all boy. I try to talk to him about slowing down, but the boy jumps off things and well, he is a boy if you know what I mean.

Ms. Denise then comments about how it has been a day. I was not sure if I wanted to know what that meant, but curiosity won. She then said, I must not have talked to Carter's teacher, Ms. Crista yet, because there was a biting incident. She quickly said, Carter got bit. Carter may have gotten bit, but what did he do to provoke it?

Natalie and I then were about to walk out the door to go pick Carter up, when she threw up. I was hoping it was a one time incident; hoping. I then get Carter and Ben, I pick up carpool on Wednesdays and head home. I finally got Carter to explain why he was bit and we discussed how he got in trouble and that we are to keep our hands to our self. Oh yes, he provoked it.

We were not even a block away from the house and Natalie throws up again, but this time in the car seat. Poor thing, I felt so bad for her.

We get home and I clean Natalie up, talk to Carter's teacher and try to get Natalie to take a bottle since she had not eaten all day. She downed a bottle only to threw it up again.

We were suppose to be in Dallas tonight for Natalie to have her ENT follow up from her tubes tomorrow. I figured after the 3rd time she threw up, we were out. I was not about to put my baby girl in the car for 5 to 6 hours sick.

Natalie then lays down on the floor and falls asleep. I put her back down at 4:30. She had only been up for 2 hours since her 3 hour nap, I knew she felt bad. The night went on, but she only got sick one more time and we finally got her to take about 2 ounces of pedialyte and keep it down.

I decided this morning to take Natalie to the doctor to be safe, especially now that she was running fever. We went to the doctor, where they ran a bunch of test all coming back fine. Dr. Scott wanted to double check her heart, so we went to the hospital for a chest xray. Two hours of sitting in the hospital waiting, we finally have a chest xray. The xray is all clear and looks good, so I guess the poor thing has virus of some sort. We are going to start an antibiotic to be safe, so hopefully she feels better soon.

On a positive note, I did not get a call from Carter's school today and he said he was extra nice to his friends and teachers. Sweet guy has been praying for God to help him be nice and keep his hands to himself. I love listen to him pray at night, so sweet.

So, I am asking for a fast forward button so this week will be over and I can start fresh with the weekend. I know we all have those mornings, days or even weeks like myself that just wear us down, but I always try remember I can do anything with God, because he gives me strength. He is always with me walking beside me through it all whether good or a little more challenging.

"I can do all things with Christ who strengthens me"

Philippians 4:13

First Hair Cut

Natalie and Michelle Snell

This past Friday, Natalie got her first hair cut! She was such a big girl and did awesome. Of course I was holding her in my lap and letting her play with my phone. She still even has a hint of curl in hair still, which I love and I can still pull it back in pigtails, another thing I love.

Thanks Michelle!

Snow Days

All bundled up and so cute

Having a blast

Natalie loving the snow

Carter and Frosty

Amarillo has had several snow days lately. The kids loved it! Carter did not even care it was only 4 degrees outside one day. I tried to keep him inside as long as possible, but he could not stand it and neither could I. Of course, he was only outside for 1o minutes. Don't you remember what is like to not care if you are cold or not?

Natalie loved the snow just as much. I would not dare let her outside when it was freezing, but she did come out one day for a few minutes before I put her back inside with Larry. She was not a happy camper, she wanted to be outside with her brother.

Carter is 4 years old and this is first snow man! He wanted to make a whole snow family, but that was not in the cards for mommy. He did tell me, that Frosty was going to come alive later and play with us...I think we watched Frosty the Snowman one to many times this past Christmas.

CHD Awareness Week was wonderful. We topped off the week yesterday with our celebration of Natalie being home in Amarillo for one whole year! Larry and I feel so blessed and could not be where we are today without all the love and support from our family, friends and prayer warriors...thank you, again.

Little Hearts Hold Big Hopes...

High Plains Mended Little Hearts is a the high plains branch of Mended Little Hearts. Mended Little Hearts is a nationwide organization for parents, caregivers and families of children with a heart defect, provides resources and a caring support network to help families work through overwhelming emotions involved with having a child with a heart defect. This organization helps families move forward to find laughter, healing and hope.

Purpose of Mended Little Hearts...

1. Offer support to family members and/or other caregivers of children affected with congenital and acquired cardiovascular disease
2. Offer educational/health resources relating to congenital cardiovascular disease and well-being
3. Raise awareness in the community about children and congenital cardiovascular disease and factors that may contribute to this disease

High Plains Mended Little Hearts has been a huge blessing in my life. The families in this group have been a big support system for me. I have called them at 9pm at night before asking a paranoid heart mom question. Thank you to this group for being there for my family and for others...

High Plains Mended Little Hearts is meeting this weekend to put together "Care Bags," for patients that are hospitalized. If you are in the area and have any of the following items you would like to donate, please let me know. I can pick them up or you can drop them off by my house. Care Bag Items Needed...

• travel toiletries (shampoo, conditioner, lotion, soap, toothpaste and a brush)
• kleenex
• hand sanitizer
• chapstick
• note pads
• pens
• non-perishable snacks (peanuts, crackers, trail mix, etc)
• small stuffed animals (has to be new)
• baby socks
  playing cards
• game pads (crosswords, word find, sudoku, etc)
• magazines
• gift cards for gas
• small bottle waters
• crayons
• coloring books
• flavored water packets
• thank you cards and stamps

If you want more information on High Plains Mended Little Hearts, you can check out the Facebook page at High Plains Mended Little Hearts or you can send an email to amarillotx@mendedlittlehearts.org

Congenital Heart Defect Awareness Week

Congenital Heart Defect Awareness Week, February 7th-14th

What is Congenital Heart Defect? A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.

Did you also know?

• Up to 1.3 million Americans alive today have congenital heart defects; one half of these are under the age of 25.
• Approximately 9 out of 1,000 infants are born with CHD each year - 36,000 babies per year in the US alone!
• CHD is the most frequently occurring birth defect and is a leading cause of birth-defect related deaths worldwide.
• Some CHDs may not require treatment, other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really cured.
• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months or even years after. In some cases, CHDs are not detected until adolescence or adulthood
• Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research

CHD has become a part of our life whether we wanted it or not. Natalie has a congenital heart defect that will effect her the rest of her life. She has already had three major open heart surgeries and still has at least one more in her future.

I will have posts throughout the week on Foundations that support the families with CHD and/or are committed to CHD research funding.

Finally, I would like to start the week off with asking everyone to say a special prayer for the children and families where CHD is a part of their daily lives and to prayer for the families who have lost a loved one to CHD.

Heaven is for Real...Todd Burpo

I just finished the most amazing book ever! Heaven is for Real by Todd Burpo and is truly incredible. The power of prayer and Heaven is is real! Larry and I feel that Natalie is only here with us today, because of the power of prayer. I think I have told a few of you this story, but not sure...

I remember the morning we got the call that the night staff was having a hard time getting Natalie's oxygen back up. She was already on transplant, but there was still have few kids in front of us on the list. This was the one night no one decided to stay at the hospital, which was probably a blessing, because I would have been flipping out.

Larry and I got the call around 5:15am and we were at the hospital by 6:45am. When we got there, the nurse asked if I wanted to hold her. I had not been able to hold my baby girl in almost 3 weeks, so I was all over it. I remember thinking how odd it was, because she was already intubated. I remember after her first surgery, our nurse saying they do not like you to hold a child while they are intubated because of the fear of the tube moving or something like that.

I did not question, because I wanted to hold my baby girl. We were at the hospital right at shift change, so all the night staff was coming in telling us they were praying for us and the morning staff coming in shocked and saying they were praying for us. Natalie had been there now 30+ days, so we new the staff pretty well. Our pediatric cardiologist also came by, but did not really say anything. Dr. Zellers normally is not CV-ICU, because he does the heart caths, so I remember thinking this is a bit strange as well.

I am convinced that God was guarding our hearts that morning. There was a lot of things that did not make sense to me, but I just did not question, because it was all happening so fast.

Her surgery did not last near as long as the first one, for one reason in particular; it worked this time! Dr. Forbess preformed the exact same surgery he had a month earlier, but this time it worked. The doctors all told us after her first surgery, that they had never seen a baby not tolerate the BT Shunt before. I just thought, nice our child wants to be the first. My father always told me to never do anything half way and to put 110% into all I did. I just figured great, Natalie has already started young...life is going to be interesting.

The surgical team calls every hour to update you during surgery. I remember when Larry got the call the surgery was successful. The nurse said something like, "She is doing great, this is so much better than we expected." Again, we did not think much about it.

Once Natalie was back in the room and settled, Larry was napping on the couch beside her and I got up to go the bathroom and stretch my legs. A nurse came up to me and was telling how Natalie was such a fighter and how a few of the nurses that were not there that day had called in crying because Natalie had unexpected surgery and to keep them updated. She then went on to tell me again, that they had never seen a child not respond to the BT Shunt before.

I went back to Natalie's room and starting to think about what all had actually happened that morning. I looked at Larry who was now awake and told him, I am starting to think either the doctors did not think Natalie was going to make it or they had no idea what was going to happen during the surgery.

I can't tell you all again, how blessed we feel to have our little miracle in our lives. We owe it all to prayer and to our Lord Jesus Christ....thank you!

After this experience we had with Natalie this book means so much more to me. I truly believe that Natalie one day will walk up to a picture of my dad and know exactly who he is without me ever telling her. I just know my dad, Jesus and their team of Angels were with Natalie during all her surgeries.

Here is an overview of this book:

A young boy emerges from life-saving surgery with remarkable stories of his visit to heaven. Heaven is for Real is the true story of the four-year old son of a small town Nebraska pastor who during emergency surgery slips from consciousness and enters heaven. He survives and begins talking about being able to look down and see the doctor operating and his dad praying in the waiting room. The family didn't know what to believe but soon the evidence is clear. Colton said he met his miscarried sister, who no one had told him about, and his great grandfather who died 30 years before Colton was born, then shared impossible-to-know details about each. He describes the horse that only Jesus could ride, about how"really big" God and his chair are, and how the Holy Spirit "shoots down power" from heaven to help us. Told by the father, but often in Colton's own words, the disarmingly simple message is heaven is a real place, Jesus really loves children, and be ready, there is a coming last battle.

I urge you all to read this book. The book is not long and will literally take you less than day, because once you start you will not put it down.

God is so good and loves us all, especially the children...

We are above freezing!

I think Mother Nature is playing a mean joke on half the nation this week. Last Friday and Saturday, I was outside with my kids all day playing in 70 degree weather and this we have been experiencing 20 below zero.

Last Thursday was my sweet husband birthday; Happy Birthday Larry! Carter could not understand why we were not having a full blown out party. It did not help that my brother in law's birthday was the next day so we had to have the discussion all over again. Carter did think that Larry needed a Spiderman cake. Well, look what my mom found at the grocery store...see picture above. That is right, it is giant Spiderman cupcake. Carter was super excited for Larry to come home from work and see it. To top off the Spiderman cake we got him a Mickey Mouse card that played the "Hot Dog" song from Mickey Mouse Club House. The minute Larry opened the card, Natalie's face lite up, she loved it. Who thought the birthday was actually about you?

Amarillo then had two days of 70 degree weather and we spent as much time outside as we could. I know this is not 100% safe, but we really do not have much of a backyard, so I let my kids drive the jeep in the alley while I stand there and watch for cars. Our neighbors came out to play too. At one point we had 3 bicycles, 3 motorized little vehicles and toys all over the driveway. We had a blast! I posted a picture of the kids in the jeep.

What a way to top off a weekend, then to have your kids share their germs with you from the following week. I woke up Sunday, we the stomach bug and a horrible cold. I am over the stomach bug, thank goodness, but still have the cold. I told Larry, that I had been wanting to lose about 5lbs, but would not prefer to lose it that way ever again.

Amarillo and half the nation was then hit with the lovely weather we have been having. I can't complain to much, because we did not get hardly any snow, just 20 below zero. You know it is cold when they report the North Pole is warmer than Amarillo.

I decided to keep Carter home from school on Tuesday, because the weather was so cold. Amarillo does not cancel school for anything. I thought I should keep him home when the news was saying if you were outside for more than 20 minutes you could get frost bite. However, half way through the afternoon, I went outside to remind myself just why I kept him home. He had cabin fever bad, needless to say, he went to school the rest of the week bundled up.

Natalie had her 18 month well check up this week. She is doing awesome! She is in the 9 percentile on weight and staying steady with everything. I just feel so blessed every time I look at her.

I have a small prayer request today. We have some friends that just got some bad news about their unborn child. They found out the baby's brain is under-developed at this point. The brain is measuring about 24 weeks and she is 34 weeks. They have several doctors appointment in the upcoming weeks to find more out.

Larry and I are strong believers in prayer. We feel that Natalie is only here with us today, because of all you prayer warriors out there. I ask for you to say a special prayer for this family and their unborn baby.