An Amazing Post from a Heart Mom

I hope everyone had a wonderful Thanksgiving. We had an amazing one , full of wonderful things to be thankful for...always one little miracle in particular that now does not sit still for anything.

I will post more about our Thanksgiving later this week. I wanted to post this link to the a blog that was forwarded to me. The post is from a mother of a heart baby that was able to shadow her son's heart surgeon on a different patent, but got to see what her baby boy went through.

I have always wondered, but I do not know if I could do that, even if it was not Natalie. I know this is a totally different hospital and the patent's heart defect is different than Natalie's, but wow. I am so blessed to have had an amazing team work on Natalie and continue to work on her and care about her. Thank you, Children's!

http://inky-binky-bonky.blogspot.com/2010/11/shadowing-my-sons-heart-surgeon.html

Children's Appointments

We had a long day on Friday, but Natalie had all her appointments at Children's and everything went pretty good for the most part.

We started our morning with an ENT appointment. Natalie is not hearing clearly right now and with all the infection she has had lately, they thought it was best for tubes. Because Natalie had RSV recently, they like to wait 6 weeks before anesthesia so she will be getting tubes in late December.

We then drove around for a while between appointments, because Natalie could not eat. She had a sedated echo, which causes her not to be able to eat 6 hours prior to the appointment...trying explaining that to a 16 month old. She actually did awesome! We were pretty blessed, because she slept for about two hours in the car and we drove around Dallas. Larry and I actually drove past where we lived while we were down there, so I could take a picture and add to Natalie's First Year Book (which is not even close to being done).

Her next appointment at Children's was around noon with Dr. Zellers for a check up and a sedated echo. Believe it or not, her oxygen was running 97! We could not believe it, I have never seen it that good. The doctors always told us that her oxygen would actually be better in Dallas than Amarillo, because Amarillo's elevation. By the time they did the sedation, her oxygen had dropped to 88/90, which seems more realistic to me, but that is still amazing.

Natalie did not do so good with the sedation medication this time. They said they should be the last time they have to sedate her, because she is getting to big (thank goodness). The medicine is pretty nasty or at least they say it is. She took it okay, but fought like any normal kid getting medicine shoved down their throat.

Natalie then tried to fight going to sleep so bad; it was horrible there for about 10minutes. She kept trying to get out of my arms, but then would fall back on to my chest and go to sleep for a few seconds. She then got a bit sick and threw up, but the saddest part was, she threw up and then her head just fell in my hand. I kept thinking about the U-Tube video that went around several months back with the boy who had sedation from the dentist, I think.

It broke my heart, she had no clue what was going on, but trying to fight me and the medication. Natalie finally went to sleep after about 20 minutes of fighting. She then, woke up a few minutes before the echo was over, but he got what he needed.

Overall, everything went great with both appointments. Natalie seems to be doing awesome! We just watch her for the next few years. She will let us know when it is time for the next surgery; oxygen lowering, sleeping more, loss of appetite, etc.

Thank you all for your prayers on Friday. We are truly blessed to have such an amazing support system. Have a wonderful Thanksgiving!

16 Months Old

Carter and the Friendship Bear

Natalie is officially 16 months old today! I can't believe how big she has gotten. She is feeling so much better, but we are still playing it safe and staying home not doing to much. She has an appointment in Dallas this week with an ENT and Dr. Zellers, where she will have a sedated echo. The echo is just routine, Natalie's last echo was in February. I will be one long day, but at least it is all in one trip and not multiple. I will updated everyone this week on how the appointments go.

In Carter's class at school, each child starts out with 3 bears every day on a chart. If a child misbehaves, they get a bear taken away. If the child continue, they get another bear taken away. And lastly, when the 3rd bear is taking away, the child goes to the office. So, Carter comes home Wednesday and says he had a bear taken away. I asked why of course and he told me he hit someone. I asked why he hit his friend and he informed me, the friend hit him first, who knows if that is really the truth or not. We then talked about how we don't hit our friends and why we don't hit our friends. Then, I talked to him about the bears and reminded him he does not want to have one taken away, because that is not good.

So, I got to pick Carter up early for his first dentist appointment ever (more in a minute on that) and he pulls the "Friendship Bear" out of his bag. The Friendship Bear is given to the child who was a good friend to everyone in his class and his teacher that day. Now really, the day before he got in trouble for hitting and today, he gets the Friendship Bear...makes me laugh. He got to keep the bear all weekend and has been so proud of it, he even slept with it every night. I love the Friendship Bear, but I have never been more excited to take something back in my life. I dread the day, he comes home with the class pet for the weekend.

Okay now back to the dentist...I took Carter Thursday afternoon to his first dental appointment ever. I did not go back in the room with him, because I know better; a child is always better when mommy is not around. He did awesome! They showed him all the tools and let him play with the chair. He was not a fan of letting them put the instruments in his mouth, so they didn't. Basically, this was a get use to the dentist visit. Our dentist suggested that it would be good for him to see Larry or myself get out teeth cleaned next time we come. Well, luck has it, he gets to go with me in two weeks to the dentist to watch me get my teeth cleaned. I having a hard to time picture them cleaning my teeth while my 3 almost 4 year old son sits patiently in the corner watching and playing (more to come in 2 weeks).

I am still doing great with my running. I ran 12 miles on Sunday and could not walk or should I say, I did not want to walk that night. I was so worn out, but it felt great to run 12 miles and now that I only had 1 more for the full half marathon. The Half Marathon in only 2 1/2 weeks away! I am so excited, but a little nervous. I just keep reminding myself I am doing it for Natalie! I can't think too hard or I start to cry, which is not what you want to do when you are running 12 miles.

I hope everyone has a great week and I will post this weekend after her appointments in Dallas. Please say a little pray for Natalie and for Larry and I. Natalie sedated echo is not until noon, so she can't eat or drink anything, but clear liquids after 6am...no fun, especially when you can't explain why they can't eat or drink.

Feeling Better

Natalie is feeling better! We went back to Dr. Scott's office today for a check up. Natalie's O2 is back up to 82 from 78, this is a huge relief for me. She normally runs around 84 to 86, but we are in the 80s.

The good news is we do not have to go back to the doctor until the end of November. The bad news, she got 3 shots today. Two where for her 15 month well check up, which we have obviously not been well and one was her second flu shot. The nurse said Natalie might run a slight fever and be a bit irritable this for 3 or 4 days from the shots. I said, "Bring it on", we have been there and lets just get it over with. So far though, Natalie seems happy and just walking all over the house.

We did not have an eventful weekend, but we did have a nice time hanging out at home. I got Carter the movie, Mater Tall Tales. I have now watched it over 30 times, no lie. I am worn out, but he just asked to watch it again. Carter also got some new boots (picture attached) this weekend. He says, "They are like Daddy's boots." I am pretty sure Larry's do not have green on them, but Carter is so proud of them. He has even worn them with shorts.

Thank you all again for all the prayers of healing for Natalie and sanity of myself with sick kids. I am praying we are on the mends and pray we stay well. I am starting the slow lock down for winter season for Natalie, poor thing is not going to get to go many places until later spring, but I can not handle another case of rsv or worse, plus her immune system is shot after 4 months of antibiotics of some sort.

RSV Update

Natalie doing much better today. She still has a nasty cough, but seems to have more of her personality back.

I am involved in a group in Amarillo called, High Plains Mended Little Hearts (HPMLH). HPMLH is an organization nation-wide the provides awareness about congenital heart defects and support for families with a child with congenital heart defect. Jamie Synder runs the High Plains branch has been a great source of information for me. Her son, Kaston has tricuspid artesia and is now 8 years old. Kaston not only went to Children's for all of his operations, but has Dr. Zellers as his doctor as well. Jamie provided us with a blog sight today that is not only extremely helpful, but encouraging as well.

The sight is, Adventures of a Funky Heart. Steve, the writer of the blog is 44 years old and has tricuspid artesia.

http://tricuspid.wordpress.com/

I find it encouraging that Steve is still healthy and alive. I know that seems like a lot, but Steve is the longest live person right now with tricuspid artesia. I find it encouraging that he is doing so well and that by the time Natalie is 40, look at how much our medical field with increase in this area.

Steve posted the other day about the flu and colds. I have never thought of it, but it was nice to hear him explain what a cold feels like when he lays down. He said he feels like he is drowning, because of the pressure. Natalie is too young to tell us how she feels, but I have noticed there have been times this past week that she really wants to sit upright or lay on my chest versus down in her bed. I have never thought about how laying down might be making her feel worse.

Thank you all for the prayers and support this past week. Natalie goes back to the doctor tomorrow for another check up. I also talked to Dr. Zellers last night again. He feels my comfortable with us being in Dallas for Natalie getting tubes in her ears. We are in the process of setting up the appointment. I will keep everyone posted on that as we find more out.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and he will make your paths straight"

Proverbs 3:5-6

RSV, Among Other Things

Life was going great until last Thursday night in the middle of the night. Both kids went to bed just fine and things were good, until about 11:30pm. I went to check on both kids like I do every night. Natalie was fine, but when I went to check on Carter he was crying. First, his pull-up had leaked, so like any other good mom at 11:30 at night, I changed and put him on the other side of his bed, which was dry.

He then came into our room 10 minutes later crying, so I just let him get in bed with us. He finally went to sleep at 12:15am and Natalie woke up. I gave her a bottle and she went right back down. I took the bottle downstairs and when I came back up, Carter was wake crying again. He was extremely restless and would not go to sleep. Larry and I tried everything, we thought.

Finally around 2am, Carter started screaming bloody murder, saying his ear was hurting. I had that mom feeling that his poor ear drum was about to burst. We got Carter and Larry all dressed to go to the ER. Right before they walked out the door, Carter calmed down and wanted a popsicle (really?). We decided to not take him to the ER, but let him get in bed with us and watch a movie.

Have you ever tried to sleep when your child is in the bed watching a movie...doesn't happen. Every time we went to sleep, Carter would start laughing and talking to us. Finally at 3am, we turned the tv off and he went to sleep. Our night did not stop there though...

Around 4am, Natalie woke back up. I gave her another bottle, but could tell she was not feeling great. We did not have any motrin or tylenol in the house (never will I make that mistake again). For 2 hours I tried to calm her down and get her to go back to sleep. Finally at 6am, I just went downstairs with her and we watched Mickey Mouse.

The minute the doctor's office opened, I called. Larry did not even ask, he just stayed home to help me (I love him). We were loading the kids up to go head to the doctor's office and Natalie threw up everywhere. I just looked at Larry and said, "Thank you for staying home with me, I would be crying right now, if I was by myself."

Carter had a double ear infection and a slight cold. He is doing much better now. In fact, you would not even know he was sick a few days ago.

Natalie on the other hand, she had another ear infection in her right ear. We are in the process of talking about tubes for her. We are trying to figure out if we should see a specialist in Amarillo or Dallas, because of her heart and the procedure of doing tubes. The doctor gave her a shot and an antibiotic to take for 10 days. Yesterday, Dr. Scott called back and said her strep test came back positive as well. I talked to her for a while and decided to take Natalie back in. I just felt that after a shot of antibiotics and 2 full days of it, she should be at least fever free.

Natalie and I went back yesterday afternoon. Turns out, Natalie has a double ear infection, strep and yes, that is right people...RSV. The one thing, I have tried so hard for her not to get and she gets it. This will make you laugh (well maybe not), I talked to the CVS Caremark people yesterday about Natalie's synagis shots (RSV shot), they will be mailing her first one out this week. I am a little frustrated, because I talked to them 2 weeks ago about everything, they just did not push that one little button that said ready or whatever it says. Come on people, I could have use that 2 weeks ago or even a week ago.

Natalie ended up having a chest xray done yesterday as well. Her chest has a little inflammation, but her heart looked good. Her O2 level is down a bit to 80-81, which is lower from 85-86, but she still in the 80s. We will be going back to the doctor daily for check ups, this way they can keep an eye on her without us having to go to the hospital.

We have been in contact with Dr. Zellers in Dallas (our pediatric cardiologist). I had actually called his office yesterday morning to talk about an Ear, Nose and Throat Specialist. We were suppose to go to Dallas Friday for her sedated echo, but have had to cancel it for right now. Dr. Zellers called me on his cell phone last night to check on Natalie and see what he could do for us. Now that is an awesome doctor! Actually all of our doctors have been amazing throughout all of Natalie's life. Dr. Scott called me at 8pm last night to talk about Natalie's chest xray.

Dr. Scott was going to call Dr. Zellers today to let him know about everything, Natalie got another shot yesterday and one this morning as well. She seems better this morning, a lot more smiles. I will keep everyone updated a lot more this week on Natalie's condition, please pray for her to heal. Poor thing has been sick off and on for over 3 months now, she needs a break (mom as well).

On a different note, Saturday was the Amarillo Heart Walk. My kids did not go obviously due to illness. My mom and I went to walk and we had a few close friends join us. Thank you, Amanda, Linda and Deaven for walking with us and to Randy and Stacy for the donation. We had a wonderful time and met up our Team, " High Plains Mended Little Hearts." I have posted a picture of the team; parents and the Heart Babies.

Sunday, Carter was feeling great, so we took him trick or treating with some friends. He had a blast. We went to 7 houses and he helped hand out candy. He asked us Sunday night if he could do it again tomorrow. He still has not quit grasp the concept of holidays being on one day a year.

I have posted a picture of Carter and his Halloween friends. Carter was a skeleton, but he thinks it is a pirate. He has now worn the same costume for the past 3 years and it is finally getting too small. I am going to have to figure something out for next year.

I also posted of picture of my poor sick little girl as well. She went to my mom's house while we took Carter trick or treating. She just waved at everyone and was a little mad at my mom, Gigi for not givng her chocolate as well. She wanted some so bad. She just kept looking at my mom and pointing to the basket of candy.