Friday, August 19, 2011

Auriana has open heart surgery September 2!!

Auriana will be having open heart surgery September 2!! Dr. Kirshbaum does have some concern about the weakness in her aortic valve, even though the cath doctor said it looked alright. He will be opening up her aorta so that blood can flow freely as it should. The severe narrowing has weakened her valve some though, so he will be keeping a close eye on that during surgery. Please go ahead and start praying for the team that will be working on her during this surgery and for the nurses who will be helping her recover afterwards.
I have spoken with them about my concerns that she is proned to becoming dependent on a feeding tube and they have agreed that there will not be a feeding tube placed once she is awake and aware, but it is MY responsibility to make sure she eats and drinks what she needs or they will have no choice but to place a feeding tube. I will have about 48 hours after she's awake from surgery to get her to eat and drink!! Pray that this is not a problem!!
Also, pray for Kylee. She has been through so much in the past few years and she is very worried about her sister who she loves so much having another surgery. Pray God will comfort her and give her strength and peace!

Thank you all for your continued prayers!!

Here is an example of what aortic stenosis looks like

school started!

Kylee started Kindergarten last Monday and she is loving her class! She does very well at school! It gives her stability and somewhere she can be proud of her accomplishments, which she needs. She is still going to the same Christian school that she has gone to for the past few years, which she loves. It is good for her to hear every day that what she believes (The Bible) IS REAL and that all the Bible stories ARE TRUE! She is constantly asking "this story is true, right?" when we finish reading a Bible story. It is very important to her that we keep telling her that Yes the Bible is all true and Yes God is bigger than everything, and Yes God knows everything, and Yes God is always with you!

Kylee's first day of Kindergarten

Auriana was able to go to her first day of preschool last Tuesday! She LOVED it! She kept up with all the other kids and did very well while she was there! But, once she got home, she was overly tired and slept for hours and then complained that her chest and head hurt and her oxygen was really low. So I called her cardiologist and he said no more school until she's cleared to return after surgery (probably November or so when she'll get to go back, depending on how she heals. Although with that being flu season I may just keep her out until after the holiday breaks). She is sad she can't go back and says "me too" when I drop Kylee off, but it is what is best for her so she is strong for surgery.

Here is Auriana on her orientation day

Auriana's first day of preschool and Kylee's second day of Kindergarten

Thursday, August 11, 2011

Heart surgery coming up again... date TBA. School starting next week.

So... Auriana just had a heart cath last week. Narrowing in her Aorta had been seen by her cardiologist at her last appointment in July. They were planning on placing a stint during the heart cath, but ended up not doing this. They determined that the narrowing is too low in her aorta to place a stint, but they had thought that her aortic valve was weakening and may need replaced and they determined that her valve is healthy. The narrowing in her aorta is very very bad though and will need repaired very soon---within a MONTH!!! I am now just waiting on surgery to call me with a date. I hate being on the edge of my seat waiting on that phone call. Every time the phone rings it crosses my mind "is it Children's? Are they calling to tell me the surgery date?" I am terrified of her having open heart surgery yet again. I had thought heart surgery was behind us, but not yet. I keep reminding myself that God is with us-- especially with my sweet girl-- and He will keep her safe.
There are so many other of our little "heart friends" that are so much worse off than my Auri right now. It is so saddening to hear when one of them is getting worse rather than better. Please keep our friends Levi and Katelyn in your prayers as well!! They have very extensive heart defects that are much more difficult to treat!

Here is my Auri right before her heart cath

Next up: SCHOOL!!
Kylee will be starting Kindergarten on Monday! She is excited about going back to school and being able to see her friends every day! She had open house and met her teachers today. She would not let me take her picture, but here is a picture of her with her best friend (who is visiting from out of town this week) after open house when we went to McDonald's for lunch.

Auriana will also be going to school this year. I have put her in the older one's class since she is soooo tiny, even though she is almost 3. She also went to open house today and met her teachers and the kids who will be in class with her. She fit right in with the kids. She was playing and even walked some without her walker. When I went to pick her up she told me "no. I stay". When we walked outside to go to the car she even turned herself around, on a hill, with her walker, lifted her walker up to place it on the sidewalk trying to go back in the building. She did NOT want to leave. I think she is going to LOVE school! Here is a picture of her walking out to the car with her backpack to leave for open house this morning...

Auriana will only get to go for a few weeks before having to have her open heart surgery and then she will be out for months, but I am so thankful that she will be able to experience what "normal" is before she has her surgery.

We will try to update next week with 1st day of school pics and a surgery date!!