Wednesday, January 6, 2010

let's start 2010 with some fancy Q&A shall we?

AAHHH yes indeedy I do have a blog. It's been so neglected. I am sorry. I am also sorry that I can't figure out how to label each of my photos for my year-end review. There is some funny business going on with the newer Blogger stuff so at some point I'll figure it out with my mediocre internet-savvy skillz.
Until then, I give you some Q&A about some really important stuff:


Q: So, 2009. How was that?
It was actually a strange year filled with crap and good things. Both came together sometimes in a cartoon paper covered package. And sometimes, we would open it up and you still wouldn't know what the hell was going to happen.
Preparing for the big move to Colorado was the best thing. The worst thing was well,.. leaving our home and having to see it slip away after every ounce of help we received and everything we put into it. Dealing with banks, realtors, blah blah blah. Never fun. For anyone. As a few people we know put it perfectly, "you did everything you could."
Q: Are you saying that you have regrets for 2009?
Me, personally, I don't regret much only that I wish I would have seen it coming to prepare better..maybe? But, because my constant approach to disappointment is "everything happens for a reason" it makes it hard to actually see what reason this was all for. Does that make sense?
Q: Do you think 2010 will be better for you and your family?
Well, we all still have a roof over our heads, food in the fridge, and electricity, and most importantly, our health. So, 2009 could have still been worse. But will 2010 be even better? Abso-freakin-lutely.
Q: This is the year of Natalie's surgery. How is the planning going for that?
Here is the biggie.
January 12th is only 6 days (almost 5 days) away. It's crappy to have to wait it out like this. Those days before you or anyone you love has surgery? pure torture. And we're still packing, making lists, and checking everything twice. So, at least we have things to keep us focused and busy. And most importantly, we have a few days to spend with Natalie. And James for that matter. Because even he is going to have to deal with life-changing event also.
But this hospital, as I've said it so many times, has us in good hands. The nurses that will be helping Natalie, for example, only deal with children with heart conditions. At Hopkins, you never knew who you were going to get. I still love Hopkins.. they saved our daughters life..but there is also something kind of magical about Denver Children's. As Rick put it perfectly, "they never make us feel uncomfortable."
And that's exactly it. We can even stay by her side 24/7. No more throwing us out from 8p to 7a like before. Geesh, talk about torture.
Q: Do you have enough child care in place for James while this is all happening?
So far, yes. Thanks to my mom, stepdad, brother, and sis-in-law. But once Monday the 18th pops up, things get a bit hazy.
Q: How long will Natalie be in the hospital for?
If I had a nickel for every time....
LOL No, honestly it's a really good question. Unfortunately, we don't know. We're thinking about a week. It could be a day less or a day or a week more. What takes the most time is her recovery, naturally. And that? we don't want to rush.
There are so many aspects of Natalie's recovery. From fluid drainage (in her whole body and even around her heart and lungs) to how her heart and body handle it, we just don't know how long it will take. I try to put blinders on with other stories of Fontan recovery but I'm also a really curious person when it comes to this topic. But, what we are aiming for is a very boring, non-eventful, textbook-case style recovery. If anything new pops up we'll take one thing at a time. Natalie is a tough cookie. She's going to wow everyone regardless.
Q: When is Natalie's next surgery after this?
We have no idea. After this surgery, again if everything goes well, she'll have a post-op checkup about 2 weeks after surgery and then (I'm pretty sure) follows up with the cardiologist every 6 months. Sometimes, they bump it to once a year if needed. But remember, Hopkins did that to us right before we moved..and well, look what happened. Way less than 6 months later and we have a (sort of) urgent Fontan scheduled. With a severe CHD you never ever really know. The theory is that Natalie may need another surgery once puberty begins..some research says older than that. It all depends on many factors and that's something that will be caught at her checkups. For now, we just focus on getting Natalie through this stage of her life.
Q: How will Natalie be after her Fontan? How will she feel?
Not sure yet, but if my instincts are correct, she will be even more unstoppable. I imagine her with even more energy and for all you that know Natalie, you know that she already has incredible energy.
The biggest thing to expect is that her purple/blue (cyanosis) spells should cease. Her blood oxygen saturations will go back up to the 90s, like ours. Some kids also experience a wide array of side effects and a few are: migraines, headaches, and bowel problems. You have to remember, Natalie will be going from a low 80s level to a high 90s level. We don't know if she'll have side effects. One thing I remind myself and to feel more at ease, is that she was in the 90s for a while as a newborn. So, it's not like her body has never been experienced with a higher level. We'll just have to see. Her body will need time to adjust to this surgery, like any surgery.
Q: Will she be on any medication after this?
We don't know just yet but I'm completely sure that we'll know before she leaves the hospital. Blood-thinners are the most common medications given post-Fontan so again, we'll see. Many children and even adults, like Natalie, only have to take a half of a baby aspirin everyday. But that's just one example.
Q: When are you going to tell Natalie about her surgery?
aha!! I actually posted this question as a "what do I do?.." on my Facebook page. I think deep down, I already knew the answer, and so does Rick. We've talked about this off and on for a while now. I just needed to read more suggestions because hey, I love suggestions.
We've agreed to tell her Sunday, which is the day before all of her pre-op tests (gosh that day is going to be insanely busy..poor kid). We're going to sit down with her and tell her in the most simplest form of what's going to happen and how she's going to get well. And that yes, she will feel achy, but the doctors and mommy and daddy will always be there to make her feel more comfy. It feels so good to say that we, literally, can be there for her every step of the way. (thanks Valerie)
Q: What does her pre-op tests consist of?
Here is the order from 8am to 1:30pm... oh and mind you the hospital has someone escorting us to every it..
7:30am- no more clear liquids
8am- blood lab and chest x-rays
9:30am- sedated echocardiogram (eehhhh)
10:30am- physical exam
12:30pm- meet with the anesthesiologist
1:30pm- meet the man himself: Dr.David Campbell, Natalie's hero heart surgeon
and in between these visits I will try to figure out how the heck I will get Natalie to eat. I hear that the formula they use to sedate isn't too strong and that it does make you very sleepy for the rest of the day. So, if she sleeps all day and is up all night (the night before surgery) well hey, I don't mind. She'll be sleeping alot once surgery begins, so it all evens out. Any extra hours we can get cuddling Natalie will be nice.
Q: When does James go back to school after all of this?
Right now it's sometime around mid-February if everything goes as planned (or as hoped to put it more like it). He's missing school so much and it truly sucks to have to keep him out right now. But with the nasty stomach flu going around there's an even bigger chance that we may avoid having Natalie get sick while in the most critical phase of her recovery.
Q: Are you ready for this?
You never can be. As parents, we're just taking it one day at a time. Thankfully, we have eachother for support. And thankfully, we have so much incredible support from family and friends. There is just something special about having people pray and think of your child all across the nation. You can actually feel the love. Without that, I don't think we'd be as strong about all of this as we are now. I also think of how heroic Natalie is. She is the one who doesn't really get to prepare. She is the one that sort of gets thrown into the madness and we're there to keep her calm and happy. Our job is easy compared to the life-long struggle that she's going to have.
Q: You make it sound so scary. Is it really that scary for her?
Like alot of CHD parents/families's the unknowns that we all fear. Like for example, her life expectancy. I don't have a clue how long she'll live. I have no clue how long I'LL live. But thankfully, Natalie was born in 2007 and not in 1950. We have tons to look forward to with Natalie and with her living her life. She'll have more things to talk about as she gets older rather than mostly about her CHD. We picture her having a great childhood, being happy, and living a full life. She may even be able to have children if she wants. I still like to firmly believe that her life opportunities are endless and that her CHD won't really get in her way. There is already way more to Natalie than her CHD. And she's only 2 1/2.


Hope's Blog said...

Thank you for sharing so much in your post. We are going through a lot of the same thoughts, but ours is for Hope's Glenn. I know she needs it and it will help her, but I am just scared to death. The cardiologist hasn't said much about it other than she is not ready for it yet, so it is more waiting.

You and your family are in my thoughts and prayers.

The Smith's said...

Hi Dawn-

I just recently found your blog and wanted to comment that we will be following and praying for little Natalie during her Fontan. Our son, Luke, is almost three (Double inlet left ventricle) and will have his Fontan the summer of 2011. We are 18 months out and I have anxiousness about it! So I can understand how your nerves are on edge.

Thank you for sharing your story and I will definitely be checking in on your family!

J said...

wow dawn this post (especially the last question) brought tears to my eyes.
i never think of natalie's life you said, we don't know how long we will live ourselves! and to be honest, when i was her last week i forgot about her chd (other than the times we discussed her surgery.) you're so right..there's so much more to her. and i believe wholeheartedly that natalie was born to live a happy and full life.
god i love her. :)

J said...

oh, and james is such a sweetheart and i know he'll be a great big brother while natalie's recovering. he deserves some extra special love too. :)

FallenFairy said...

I wanted to let you know that I'm so proud of you guys. This has been a really rough time for you guys and quite the downhill battle. There's no where to go but up from here and I pray for you and your family so often. I know the Natalie will be stronger than ever before. She'll make you realize why they call them "terrible twos" when she bounces back. She's gonna run circles around you guys and make you feel older than ever before. :-D Heck that's what kids are for anyhow.
She's amazing, and you as a family are amazing also. We love you all.