Tuesday, June 28, 2011

Just Floatin'

It's lil'bub's new way of floatin! Boy do we still love noodles :)

Can you believe how long this munchkin has grown!?!?
At this rate, she will surpass me at 6!


Tuesday, June 21, 2011

Father's Day and 29 weeks

I had some fun making a nice brunch for sweet Bub the hub and my own daddy on Sunday. I really jump on any excuse to make my recipe for Berry Turnovers!! SO delicious, and I get to make a big mess:

The hubs also requested real bacon for the occasion. Poor guy only gets turkey bacon in our house normally. I also had lemon muffins, cantaloupe with grapes, and lil'smokies. The Bub family fully recommends Applegate Farms Organic cocktail franks:
They are delicious with a little spice kick at the end!

Here was the spread...

Happy, hungry daddies!

Then grandaddy got some quality cuddle time with the munchkin
grandaddy, help me rub my feet!
yes, that's nice :)
And the 29 week bump at our weekly Sunday family swim:
How far along?  29 weeks
Total weight gain/loss? 15 at my appointment two weeks ago
Maternity clothes?  heck yes
Sleep?  left side only now, half-way sitting up to prevent the reflux :(
Movement? pretty constantly, she likes to kick her sister the most- ha!
Food cravings? my appetite has diminished a lot, can't fit much anymore
What I miss: carrying Avery more, cooking more...
Milestones:  Baby Bub is almost 3 pounds and about 15 inches long already!

We are working hard on getting her nursery ready, I can't wait to share some photos soon :)

Thursday, June 16, 2011

Blog Hop

Kelly's Korner is doing a blog hop about special needs families, which is really nice to see. I'd like to support by participating...it always means something to me when I see another family that is going through something similar, since our particular path has been so rare.

I'm going to use the post from my Sugar Bee Designs website, where I explained how everything happened. I know most of my readers already know the story, but maybe it will give some hope to someone out there....

My husband and I learned that we were pregnant with a baby girl in 2007. We were thrilled beyond words! I had a ton of fun preparing for our new addition, and then in January of 2008 we were blessed with sweet baby Avery. The surgical delivery went well, but within an hour of her birth I was surrounded by a number of doctors with very serious faces.

They were concerned because it appeared that our precious newborn daughter was having small but frequent seizures while under observation in the nursery. My husband and I were absolutely shocked and terrified. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. We tried to think happy, healing thoughts as I recovered from surgery and we waited to hear a diagnosis. We were nervous to say the least, but nothing could ever have prepared us for happened next.

The doctors explained to us that Avery had been born with a rare genetic condition. She was missing the proteins that regulate cell growth, that act as tumor growth suppressors. This allowed benign tumors to grow willy nilly in her brain and heart. You know, only the most vital organs in her little body! She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.

So that's when Avery's brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that's when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.

This is the part where I have to pause. And breathe. Because more than two years after the fact, I can still feel the residual effects of this man's words pulsating through my mind and body. I can still close my eyes and remember the breath stealing sobs I cried as I said goodbye to my week old daughter and heartbrokenly handed her to the nurse that would take her to the operating room.

And you know what? This little girl did beautifully. Her strength amazed us. It still does! She was in and out of surgery three times in her first month of life.

Her daddy and I had to wait anxiously each time, (with an abundance of our family and friends :) praying that this was the right decision.

It was.

Our precious sugarbee came home to us after one month in the hospital. We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better-- i.e. giving the "normal" side of her brain time to take over tasks that the opposite side can't handle anymore...and we couldn't have done it any earlier! More on her surgery HERE.

Avery would actually need two more brain surgeries, at three months of age and at five months, before we saw our very last seizure to date. We count our blessings every single solitary day for the past two and half years that they have not returned. Those things are like monsters to me, and I can't even imagine how confusing they were for Avery. There was certainly little chance of a meaningful recovery if they had continued.

My heart aches constantly for those mothers currently searching for an end to infantile seizures and spasms. It is a black hole of constant meds, false hope, desperation and fear. No one deserves to be there. No one.

So it is always with a heavy heart that I explain Avery currently has freedom from seizures, but we have to remember it could be gone tomorrow...and in such instances as this, our little family has to focus on TODAY. Today, she is healthy. Today, she is growing like a weed. Today, Avery is working harder than you can ever imagine to accomplish her goals.

Just like any other parent, my husband and I want everything in the world for our cherished daughter, and we will do everything in our power to get it for her. That included leaving a job that I had no intention of leaving. I needed to be home every day with my daughter to get her better. In order to help Avery reach her highest potential, I've become her very own special needs advocate. The therapy appointments certainly don't schedule themselves! I mean, who else is going to sit on the phone for hours with the insurance company?! It's definitely been a continuing adjustment in our lives, and we have done it with the love and support of our friends and family.

We still struggle everyday to get Avery where she needs to be. That means a whole lot of therapy and a truckload of patience! It's still a roller coaster and probably will be for a very long time, but every day with her is a gift.

We are expecting a little sister for Avery in a couple months, and can't wait for her to have a new friend that will love and cherish her as much as we do.


Friday, June 10, 2011

Vacation Well Received

Our family vacation was as relaxing and fun as we had hoped for. We went to the pool at least twice a day, did lots of resting and napping, eating really overpriced and yummy food, and this momma even got a spa visit in! Here are some good photos from our trip:

Avery automatically approved the hotel bed!

We went straight for the pool---the resort was GOR-geous.

Avery really embraced her new float.

And of course the noodle was a hit as usual

Good times!

Lil'bub is getting more independent :)

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