It's CHD Awareness Week!!!

When Ellie was 32 weeks gestation, she developed Tachycardia (a fast heart rate) and subsequently a severe heart murmur. Shortly after delivery, it was heard again by our pediatrician. Visit after visit I kept asking about the murmur and had other troubling signs that something was not right. She would breathe in short shallow breaths, she would sweat profusely when she ate. Her legs always had a marbling to them that looked like a rash and there were no pulses in her feet. She quit growing from two months to five and a half months. She also quite babbling about a month before she was finally diagnosed. These were things I continually went to the doctor for. But every time I was reassured that she was o.k. and that they had a simple reason for it. I am not telling you this to worry, but a mother's instinct is so strong and wish I had gone to a different doctor for a second opinion. It's worth it if you feel that something is not right. Ellie was born with a Coarchtation of the aorta and a bicuspid aortic valve. If caught at birth, is usually repaired with one surgery and possible stints later on. Because hers went undiagnosed, she developed severe dilated cardiomyopathy and at the time doctors said she was probably days away from death. Some have not been so lucky. This is when we entered the world of CHD. I have met so many wonderful people that have been such a great support to us and those that already knew us that have prayed on our behalf. We are so grateful for all the medicines and measures that have kept Ellie sustained thus far. I wanted to post about the statistics of CHD for awareness week.

CHD Statistics-

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by spreading awareness, someone might be spared the sorrow and the grief that comes along with this birth defect. I would love to see more research go toward this. And as technology gets better, we are hopeing to see research go towards a possible cure.

Update on Ellie-She has not had a passing out episode since she has been on her life watch monitor. Yeah!!! But it would be nice to see what her heart is doing. She has an MRI on Feb. 23 if she can stay healthy for 3 weeks before. Wish us luck on that one! Hopefully I can post on her first steps soon. She's taken a few so far.

So, we're back!!!

Don't worry, she hasn't had brain surgery. I scared some family members when I sent a text with this picture. It is a telemetry monitor to see if these "passing out" episodes have anything to do with siezures. So far, they don't see any seizure activity.

We managed to not make it out of January without a hospital stay. We were so close, yet so far away. Ellie has been passing out a lot lately so we are in here to try and find the cause of these episodes. Right now they have her hooked up on an EEG monitor. She has a turban on her head to protect all the electrodes. They are looking at everything due to her history. Luckily, they caught one when we got here yesterday and had another one today that the nurse witnessed. We are just hoping this is some benign cause and not something new to deal with. Ellie likes to keep us on our toes. On Monday, the pediatrician was listening to her heart when she got mad and passed out. She says that her heart rate lowers quite a bit during the spell. Dr. E ordered her a life line monitor that she can wear for a month but it won't be here till Friday, so Dr. E thought it was best that she stay until she can get hooked up on the monitor. Oh, how we love our home away from home. These chairs that you unfold are so fun to sleep on. But I am grateful for this journey. It is hard at times but I would do everything in a heartbeat for our Ellie. I always think at night that this hospital is full of people who are hoping and praying for their loved ones. So when I am staring out the window, feeling so alone, I think of the thousands of window that this hospital and other hospitals have with those parents and loved ones are staring out of and then it's not so lonely. Paul Cardell's wife summed it up perfectly about the ups and downs of being the well spouse of someone your not sure if the will recover. It was words of encouragement this morning when I read their blog. If you get a chance to read it, do.

In the car the other day, we were discussing baby names to name this new one when my daughter Adrie said, " we should have named Ellie, Ivy." I said, "why should we have named her that?" She exclaimed, "because of all the I.V.s she's had!" It took me a second, but I got it. My oldest Macy was told by Grandma

On a side note, I realized the other day that I have only clipped Ellie's nails once when she was born and once after her heart surgery. Her nails just don't grow. I know that it is kind of a heart thing, but I thought that was really interesting. I also found out Monday that Ellie's BNP levels when we first were admitted in June were above 4000. It made me sick to my stomach that they were that high. It's probably a good thing that I didn't know what the numbers meant until later on. This is a measure of heart failure and under 100 is normal. She's come way down from 4000, but it was one of those, good thing I wasn't aware of that at the time, moment. I will get some pictures up soon. She does look cute in her grandpa pajama hospital scrubs and the turban on her head.

A little update...

Playing in her saucer a few months ago. She is such a happy baby despite what she is going through.

Ellie on Christmas Day!! She has gotten so big and notice how good her eye looks.

Ellie had her echo this month and for the first time in a while, we heard something hopeful from her Dr. Ellie's mitral valve was leaking severely but now is slightly leaking and her left ventricle is slightly smaller than her Oct. echo. Barely, but it is a good sign. Dr. E said we can hold off on the cath until we see it get worse. We still have yet to see function change at all. But I guess if it's not getting worse, than the longer we can hold off on that cath.

We also saw her pediatrician today who said she looked really good. Only I had my heart sink when we put her on the scale and she weighed 18 pounds 8 oz, which is what she weighed last time!!! A month ago!! At her cardiology apt. she weighed 19 pounds 6 oz. two weeks ago. I am not sure if she lost weight or what happened, but with these heart kids it is so crucial that they gain every ounce and not loose any. My only thoughts are that she has been moving around more and she has been eating less. She is snubbing her nose to more foods that she used to just snarf down. If you have any suggestions for some good 13 month age food, let me know. We are still feeding her high calorie formula, but her bottles are getting fewer and farther apart.

She also had her Synergis shots today. Ouch!! Those things are brutal. And Ellie was a champ today. We thought she was going to pass out from the length of her cry, but she managed to catch her breath and not pass out. The nurses are very aware of Ellie so it's cute to see how they come up with new tack tics to soften the blow. She won't cry when they walk in the room until they are holding that metal tray with the shots on it, so this time they blew up a glove and drew a face on it and brought it in so it was hiding the tray. She grabbed the balloon and gave it a kiss on the mouth. It was so cute! Then she spotted the tray and started to wail. It was a good try.

No more Christmas bribes!!!

I decided to spotlight my other girls. Adrie is my six year old who was born with a spitfire attitude, but can also have the heart of an angel. But I am a little worried that now that Christmas is over, the Santa will bring you nothing just doesn't work as well. This is the same child that as a baby, it took her 18 months to finally sleep through the night! In her defense she did have reflux. She was always off the charts and extremely small for her age. She weighed 15 pounds at a year. But don't let her size fool you.
The other day we were eating dinner, and Macy excused herself to go play Barbie.com on the computer. Adrie realized that she was gone and asked what she was doing. When I told her, she huffed and started to walk down the stairs. I yelled after her that I better not hear any fighting. As she continued to walk down the stairs, shaking her fist, she replied, " Oh there's gonna be a fight!" Two seconds later we heard Macy yelp.
Adrie also takes it upon herself to be Ellie's watchdog. Any time Ellie pulls herself up to something, Adrie has to be behind her so as not to let her fall and pass out. She worries a lot when it comes to Ellie. We asked her what she was going to do when we have this new one. She told us that she is going to have to quit school so she can take care of both her sisters to keep them safe full time.
When we moved up here at the end of October, shortly after we woke up to snow. Adrie peaked out the window and yelled, "wahoo we get a snow day!" We had to explain to her that up here we don't get snow days. (Last year in St. George it snowed and stuck so they got a snow day. Even though it was melted by noon.) Needless to say she was bummed.
Often I am "the worst mother in the world" and two seconds later she will say,"but I still love you." My drama queen keeps us laughing and on our toes. She is such a beautiful girl inside and out and can certainly make you feel good when she wants to. I could write about the cute things she's done all night but I will spare you. Her birthday is not till the summer, so if any of you have good ideas for a spitfire like her, I would love to hear from you. I just know that Christmas only works right before. I've tried. She told me that Santa doesn't care what you do in January.

Christmas Miracles!!!!

Although we do not know what the future is, we cannot go with out counting our blessings. We have been beyond blessed this season. We so Thankful for all those who have blessed our lives and helped us out this year. Those who were anonymous and those we know, we truly are Grateful and want you to know how much we love you. We spent a lot of time up at the hospital this month, so it took a huge burden of the holidays off us.

Looking back, we were in either in the hospital or up there for appointments or procedures more than we were home. On Dec. 22, we took Ellie to the emergency room because she had passed out for a third time in less than twenty four hours. And Emily said if she does it again to bring her in. For all you heart moms or others, is this common among these heart kids or is this something special to Ellie? Either way, it scares us to death. So they decided to put the Holter monitor on her and for two days, nothing. So it came time to take it off and I put her in the tub and she began to fall back, so I grabbed her arm and pulled her up before she went in the water. This seemed to scare her and then, it happened. Not more than five minutes having that thing off and she cried, went blue, I pulled her out of the tub, laid her on the floor and she passed out. UGhhhh!!!! The doctors can't seem to figure this out either. I just want to make sure it is not damaging her heart more. They said some kids just do this, but I worry about her heart.

Anyway, we also had her visits with Dr. Lemons and Dr. Park about the tumor in her neck. They are going to repeat the MRI in eight weeks to see if the tumor is getting larger or not. This time they said she can not be sick for several weeks before. They just aren't sure if these new lesions are from her illness that she had just prior or not. Cardiology will want them to be more definitive on their course of treatment if the next echo shows any signs of worsening heart failure. Ellie is continuing to do well. She is fighting her feedings ever since her last hospital stay but she seems to eat more each day. She does have the occasional barfs, she will do this for a few days and then seem to be over it. But this is always a scary sign for heart babies so we feel much better when things seem to go better.

As for 2010, we are meeting this next year with much anticipation and hope for the next year. We are not sure what next year will bring but we know that with the friends and families that we have, we can get through it. Even all the strangers that have reached out to us have been amazing. We love you guys!!! Thanks for all the Miracles!!!!

We are having her next echo on Jan. 6, so we will keep you posted. We are hoping to get more answers but everything with Ellie is hurry up and wait. So we shall see.

Happy Birthday Ellie!!! (And a roller coaster of emotions)

Happy Birthday Ellie!!!
This week has been a flood of emotions. I cannot believe all that has happened in this last year. It has been the greatest and worst times of our life. But we are so grateful to have such a beautiful, strong and blessed child in our lives. She has taught us so much in this past year. We have learned so many life lessons and met so many new and caring people that has helped us and had some wonderful blessings from those that love us and care about our family. What a blessing it has been to know the people we know!!!

The results did not quite go like we had planned. Afterward, Dr. E came and told us that she is seeing no increase in function. In fact, there may be a slight decrease. So the plan was that night to proceed with the cath lab and check her pressures to see if she needs to be listed right away, or if we can wait longer. Then the next morning she called us to say that she likes to review these cases that eat at her. And even though there is a decrease in function. Her left ventricle is showing a slight decrease in size from her August echo to her Oct. echo. So now we are going to hold off on the cath lab until she sees her for another echo. So at this point, we were seeing a glimmer of hope. Then we got a call from her tumor doctor. He thinks the tumor is the same size but another doctor feels that it's more prominent or slightly larger. They also are seeing two new lesions on some lymph nodes in her neck. They are not sure if this is from the tumor, or if it's from her recent virus that she had. So this means more tests for tumor. As you can tell, this has been a roller coaster of emotions for us. I was just letting it sink in that if she needs a new heart, than maybe it was better for her to have this chance at life. We are just grateful for her beautiful life and the life she brings to our family. Please continue to pray for in the coming weeks and months. She is so special to us and we continue to see blessings from these special prayers.

Ellie- we have been so blessed to have you in our lives. I have cherished every day and have learned to remember the small things. There were some days that we wondered if you would reach your first birthday, but your strength and resilience has brought you here. You are so loved by those around you and your sisters, all of them care and love you so deeply. We have met so many kind and caring people because of you and the grace of humanity has shown itself over and over. I love to go to clinic and have so many people say "hi, Ellie" and inquire about your well being. We love you Ellie, and may Heavenly Father give you the strength to be with us for a long time.

Love, Mom and Dad.

Tomorrow's the big day!!!

The day I dreaded and looked forward to is finally here. Ellie has her MRI tomorrow for her tumor and her heart. Please keep her in your prayers tonight and tomorrow. We are hoping that we see improvement on both. Plus, Ellie in the past has liked to keep the docs and nurses on their toes and let them know that nothing is routine. She coded during one of them so this makes us really nervous. The good thing is that they actually have changed some things after this incident to make it a little safer for these kiddos. It still is never easy to have her put under.

We want to thank those from the bottom of our hearts who have been so supportive to our family during these difficult times. Sometimes we know who you are and sometimes you do it anonymously, but regardless, we love you and are so grateful to know such wonderful people. I read on another blog that these are the worst and the best times of their life and I know exactly what they mean. Even though the road has been rough, humanity shows it self in some of the most giving and selfless ways.

The prayers of the children. When Ellie had her successful heart surgery, (her first attempt didn't go so well) my little girls kept asking my sister-in-law what time it was. When she said it was two o'clock, them and my two nieces went down to Kylie's room and each took turns saying a prayer. They did this on their own without any prompting. But this made them feel better and helped us feel better too. We will keep you updated on how things go tomorrow.