Thursday, January 28, 2010

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.

Wednesday, January 20, 2010

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.

Tuesday, January 12, 2010

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 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.