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.


  1. We should be heading up Monday morning. Kaidence is having a stent placed in her LPA that morning in the cath lab. I would love to bring you whatever you need. Just let me know!!!

  2. Becca... I am so sorry that you are there AGAIN. Dang it! I hope they are able to help your baby girl. Keep your blog posted.. and I'll keep checking. I wish you the best of luck. I'll remember Ellie in our prayers. You are such a brave mom. How long do you think you will be there? You mentioned Friday. Is that tomorrow, or next week? I would love to stop by and say hello. We were there today. I didn't know you were there, or I would have came up. Take Care of yourself!

  3. Oh my goodness! We were up there yesterday morning I wish I could have dropped by to say hello. We will be praying that they find out about her fainting spells. My sisterinlaws sisters daughter had fainting spells. It freaked them out they took her to the er several times. Turned out that it was just her way of having a tantrum. Silly girls.
    We missed you last night at the play. The play runs until the 16th of Feb. So let me know if you want to bring your girls another time and I will get you tickets.
    Lots of prayers!!!

  4. I am so sorry you are back in the hospital,I hope everything goes well, your in my thoughts and prayers.


  5. Little Ellie Marie, quit scaring Aunt Marie and Uncle Brent so much. No more hospital stays!!

  6. It makes me sad that the only time I really get an update on how all of you are doing is through your blog. I miss you all so much!
    Love you
    I shall be with you soon.



  8. O i am so sad for her, that little turban made me want to bawl! You are amazingly strong, i admire you. Hang in there!

  9. I can't believe how old she is looking! I guess that they just don't stop getting older do they? Tell her to hurry up and get better so you guys can come down and visit us.