Thursday, September 11, 2008

Sorry!

I'm so sorry I left off with a stressed out post and then didn't post for a week! I know I worry about other families when they don't post for a while.
I've been a bit stressed, anxious and I suppose depressed. I think the highest on my list is anxious. When we first came into this CHD world I developed tics (not the bugs!) All of a sudden my hands would get sweaty for no reason, I would feel panicky, even if Angelina was OK in my arms. I'd play with my cell phone flipping it open and shut continuously to the point that people would sometimes grab it out of my hand! I didn't like feeling this way, because I don't tend to be a nervous or anxious person. I don't like feeling like I'm not in control of myself. This past weekend that's how I felt. I could feel my hands getting sweaty, and at times I could not keep them still. When I'm like this, crying comes easily too. So I didn't post because I didn't
even know where to start! That and I truly was busy.
Today I am better, I feel more calm and in control. So what
are you asking set me off? Talk of scheduling her next surgery AND I accidentally read a blog of a little one who became an Angel a few days post op. There were pictures of her pre-surgery...she looked like a normal healthy toddler. The first few posts after the surgery were of relief, and that she was doing well. Then I think 4 days later she was gone.
Sadly, that is the hard cold reality of this world.
Anything can happen, and sometimes we don't know why. Kids can do excellent one surgery and not so great the next. There are no guarantees.
I apologize to you Heart Mommas reading this. I hope you are not reading this at the start of your day....I don't mean to be such a downer! I'm sure I am just having "a moment." I am OK. I am an optimistic Mami, and a positive person. Its just this CHD world catches you off guard. People can say all the optimistic cliches that are out there, or have "comforting" words for you, but they'll never know what happens to a Mommas heart & soul when you are given news that your child has major health problems.
Angelina
is doing well and her echo did look good. But it is time for her third and last heart surgery. They want to give her a little bit more time before doing it since it would benefit her to be walking. So no pressure Baby Girl....but can you be walking by December?
Thanks for checking in on us, there's more to tell, but enough rambling for now!

3 comments:

The Portas said...

I'm the same way. I never used to have anxiety, but now I'm the Queen of it. I hate it. Last night we watched a movie about the pioneers of the BT shunt and I CRIED and freaked out when I saw the blue baby. Before Elijah's last surgery, I was a wreck. So I understand what you are feeling. It's scary letting your mind drift into the what ifs.

Try to think about percentages. That little baby you read about who died after surgery? She was an exception. That is not typical. Your little girl will be back in your arms after her surgery.

Sending you many hugs! xoxoxxoxo

Hollie said...

I can TOTALLY identify with how you feel!!! There are days that I just fall apart. I can only imagine the emotions that you're faced with. This is a 3rd surgery, you've done it before and you KNOW better than anyone how hard it is to watch as they wheel your precious child into the OR. Take courage! There are so many people that will be praying for her before, during and after surgery! I was also wondering if you could tell me more about doing the GJ at beside? I talked to Elaina's doctors about it, and they told me that it wasn't commonly done that way at our hospital, and were asking me questions.... you can email me at hollie@herbsfirst.com or just leave a comment on my blog, whichever is easiest for you. I'd love to pursue this as an option for Elaina, but want to present it properly to her medical team. Thanks so much!!
Hugs,
Hollie

Pam said...

I was so happy to finally see your update. I too can identify with your anxiety about the next surgery. I know that Angelina and Madison have different heart defects but Madison did great with her surgery at 23 months. She was in and out of the hospital in 5 days! She had her Pulmonary valve and homograft replaced. The first three days were a little rough but then she just flew through her recovery. BTW, she wasn't walking at that time but it wasn't very long after her surgery that she started. She just needed that extra energy that a good heart gives to help her meet that goal. She has been a ball of energy since then. Praying that these next few months will be filled with health for Angelina and peace for you.
Take care,
Pam and Madison
www.caringbridge.org/visit/madison