Tuesday, May 25, 2010

We've been venturing out more, the kids and I. Probably long overdue, and definitely a breath of fresh air, this new found freedom. Longer feeding schedules, less naps, beautiful weather, and a more independent big brother are just some of the reasons. We've had outings to groceries, and parks, playgrounds, and restaurants, and almost all are met with some inquisitive comments, or at least looks, about Lilah or her 'stuff' (i.e., her fancy stroller or her feeding tube).

I took the kids to the Chick-fil-A playground the other day (and I would share the details, but it's still too painful to talk about. haha) and I had to feed Lilah while Garrett was playing. Now, when I say 'feed', I mean, give her a G-tube feeding and I've never actually seen someone do it in public. It's not gross, or disgusting, and really not even that 'medical' and maybe it's an accepted social taboo, but we go for it anyway. I think she should 'eat' when others are eating and I'm not self-conscience about it at all. And I'm pretty sure she's not either.:)

Anyway, Lilah was the hit of the playground. Seriously, it was like a celebrity showed up for an impromptu concert. Children were swarming around her like little bees--just to get a look at her feeding tube. It was really sweet....they were so inquisitive and pure in heart. Those kids were just interested--not sad or sorry or weirded out. And Lilah loved it. Here were some of their questions:

clearly, not my baby. mine is asleep, so this cute button with the button will have to do.

What is that thing? It's a special kind of feeding tube, called a G-tube that goes right to her stomach.

Why does she have it? She can't swallow well and this is a safer and easier way to feed her. It has helped her gain weight and get stronger.

Where did she get it? The doctor put it in during a surgery.

What do you put in thItalicere? Special milk, kind of like what's in a baby bottle.

How does it go in? Gravity, have your mom explain that one.:)

Does it hurt her? No, but she can feel it and sometimes it feels uncomfortable.

Does she eat anything? Yes! Crackers, Goldfish, strawberries, Cheerios, Puffs and Cheetos.

Some of those parents apologized later for their children, but it was great! I never want to pretend she's not different or even try to minimize those differences. As long as situations are respectful of Lilah (e.g., I'm not down with dressing the 'special' child up as class clown), then I love sharing who she is.

Saturday, May 22, 2010

i finally figured it out...well, kind of. the first is a dud, so play #2 and turn up the volume!

is he not sooo precious???

Wednesday, May 19, 2010

A few pictures of what we've been up to in our new digs....lots of outside time and several play dates, so the kids are adjusting marvelously. We have gotten out of the house a good bit because the weather has been so nice. Fresh air and exercise do a world of good and everyone is in better spirits. In fact, my babies have been so sweet....I can't get much done for lovin'. Look at their precious faces:

Monday, May 17, 2010

I have a confession to make....I am obsessed with 'storage'. I think it started with baby clothes, or rather a lack of place to put them. When we bought our last house, I thought it was going to be plenty of space forever. Ha. Then my first baby started going through 3 sizes of clothes per season. Then we had a second baby. And then she acquired all this equipment, and closets that had previously held wrapping paper and ceramic bunnies were full of syringes and breathing treatments and extra oxygen. Oh, and also, my husband got a job that required him to keep 652,000 boxes of 'things' that are, like, 8 ft long.
So, we got a storage unit. I am not kidding, I could go on for days about how much I love the storage unit. I was like an addict looking for a fix...rummaging the house, searching for 'storage-able' things, and filling my van like a gypsy. I made bi-weekly trips, each time feeling a high as I unloaded boxes of Christmas decor and old strollers. I was calling people I barely knew to recommend "off-site storage". Each time I returned home, it felt more like Pottery Barn and less like Living in a Barn. Until it looked like this:

It might be hard to tell, given the quality of the iPhonoto (I made that up, cleaver, eh?? Get it? iPhone-photo?? :). But, that is 12x6 feet, packed to the ceiling of 'extras' from the Burch household. I can't imagine why Americans have a bad rep for wasteful consumerism, can you??
Anyway, it was all fun and games until Paul raced in from work one day to pack for a flight that left town in approximately 1.5 hours. And couldn't find his suitcase. Because his crazy wife had carted it off to storage.
I have to say, the euphoria faded a bit as I body surfed through the treasures to find the suitcase in the back. At least I hadn't put his suits in there. Or one of the children.

Thursday, May 13, 2010

I knew today wouldn't be 'all warm and fuzzy', waking a peaceful baby at 4 at and depriving her of food are not the makings of an easy day. Nonetheless, we survived the pre-dawn hours and arrived with a sufficiently tired baby. The actual EEG process involves placing electrodes in jelly (not grape) all over Lilah's head and then wrapping it, so that she couldn't pull it off. Also, her arms were tied to her side with a sheet, so she would not interfere with the process. L is the most chill baby, but the girl does not like to be tied up, on four hours sleep, with an empty bellly, and sweat dripping in her eyes from her gauze hat. NOT HAPPY. I did manage to get her to sleep after 20 hysterical minutes .

weaping, wailing, and knashing of teeth and, then.........this.

The really short version of the outcome is that her EEG was clear and we are going to taper off her phenobarbitol over 6 weeks. Her highest chance of a seizure recurrence is in the first 3 months. There is a 40% chance the seizures will reoccur. At which point, after egging her neurologists house in anger, we will resume the medication. I pray this never happens. I also pray that if she were to have a seizure that it would be when I'm with her.

Thank you for all the sweet calls, emails, and texts.:) I have no idea what is going on with the underlined font and I'm too tired to figure it out.

Wednesday, May 12, 2010

I don't talk much about Lilah's seizure disorder because 1. it's controlled by a hefty dose of Phenobarbitol and 2. of all of her diseases, it rocks me the most. She started having seizures the day after she was moved out of ICU and to a regular hospital bed, a cruel twist of fate, as we celebrated an improvement in her heart failure and tried to wrap our brains around what it meant to have a baby with severe congenital heart defects.
The seizures started in the middle of the night and even though my mind knew instantly what I was seeing, my heart was sure Lilah was dying. I screamed for the nurses, who asked me things like "when did it start?" and "has she had a seizure before?" as the seconds moved by. The first one lasted 22 seconds and they lengthened each time. The neurologist came by the next day, mid-morning and 6 seizures later, and when he asked me "what makes you so sure they are seizures?", I could have strangled him with the 8 wires that were connected to my 10lb baby.
There is nothing in this world that compares to seeing your child suffer that way--her tiny body ravaged by tremors that you are powerless to stop. I would have taken 20 bullets to stop any one of them. Praise the Lord that the doctors were able to get the right meds and dosages to stop them in 3 days.
Now her neurologist says it's time to wean her from her anti-seizure medication. Actually, he's being saying it for almost a year and I've been putting it off....claiming it's not a good time, that Lilah's sick (when she just has the sniffles), or that I can't find a sitter--when really, I'm just scared. Really scared. I would do anything to stay in the safe-zone of Phenobarb, where I can rest my eyes at night and not worry that each little sound is my sweet girl convulsing in her crib. Where I can go to the grocery and not worry about a Grande Mal seizure in the middle of the juice isle, capped off with an ambulance ride to Children's.
But, I know neither motherhood, nor life, are meant to be driven by fear. So, off to neurology we go tomorrow, for an EEG (as a formality) to check Lilah's brain waves. To get rid of yet another medication (at one point she was on 13, now 4!) for her. And possibly add one...some type of sedative... for Momma....:).
In all seriousness, I ask for your prayers. Prayers for Lilah, that these tests tomorrow, while routine, might revel a reason to keep her on her medication if she still needs it. If not, that she will continue to be seizure-free after discontinuing her medication. Pray for Paul and I, for a continued acceptance of a life of parenthood so different from what we imagined and for a perfect peace, that only He gives.

Tuesday, May 11, 2010

Because I know you all have missed stories of my humiliation, I have this one for you today....
It started off like many...We were running late, despite the fact that we (at least Garrett and I) had been awake for hours. Today was the last day of preschool and , bless those little teachers' hearts, I was not going to deprive them of one moment with my sweet little angel. So, I did not want to be late, but Lilah (as babies do) decided that today would be the day that she got a little extra shut-eye. After waiting till the last possible moment to stir the princess, I discover her in her crib, covered in what can only be described as some sort of nuclear event. I will spare you the details.
A bath and a change of clothes and a feeding and many rounds of "I don't want to go to school" later, we are in the car and I am seeing my last moments of freedom until September click away. I tell you this so you will know I was feeling a bit, uhm, busy--you know, fitting in all the errands I could possibly need to do in the next 3 months into 3 hours.
The largest of these being the grocery. I hate going to the grocery and I'd rather have my teeth pulled than go with both kids, even though they seem to enjoy it. If you don't count the times I've had to leave because of fits over not securing the perfect car cart.

on a recent grocery trip...., don't they look like they are having fun??:)

So, I'm racing through the Kroger today, trying to fill my cart with enough things to get me through many days of feeding my family without actually cooking. Because, the kitchen in our rental is.....well, let's just say I plan on a summer of crock-pot feasts and creative crock-pot leftovers....that can be eaten on paper plates. With plastic forks.
Anyway, I've made a short story terribly long and I'm just going to cut to it--I ran into a Kroger employee, with my cart. And knocked him to the ground. And he was stocking the top shelf. On a step ladder. And I have never been so embarrassed my whole life. Except the time, as a freshman that I had to stick my head in the trash can in 'the senior hall' and vomit because I couldn't make it all the way from the nurses office to my dad's classroom.
I felt terrible. I stuttered and stammered and generally made the whole thing even worse by apologizing 3278 times, until I realized that he was not going to say "it's okay". So I tucked my tail and did what anyone in their final hours of preschool bliss would do, finished my shopping and washed my sorrows away with an icey diet coke and the newest addition of People. Is Sandra Bullocks' baby not the sweetest thing???

Monday, May 10, 2010

I've been a bit absent from the 'blogger-world' lately.....doing more reading, than writing. Not that I haven't had any thoughts or funny stories, it's just that when I think about writing them down, I decide I'd rather eat chocolate and watch Mad Men and leaf through a stack of 50 old Southern Accents magazines (that I found in a closet in our rental) and go to bed. Exciting, right?

Here's what I've been reading:

The Pioneer Woman Cooks. I stumbled upon this and it has changed the way I view "reading" online--as in, I think I might be able to break into the 2000s and read online. Like the news, or maybe even a 'chapter book'. It. Was. Addictive. is all I will say about The Love Story section. I am a sucker for romance, what can I say?

Enjoying the Small Things. I have hovered over my iPhone, crying crocodile tears over her story of having a baby that she didn't know had Downs Syndrome. I can especially relate to her desire to keep her family from being defined by that. Also, I am wondering how in the world she has time to take such lovely pictures?

You Tube. Anything Elmo. I know, this isn't really reading, but it takes up a considerable amount of my "I could be reading something" time because for the 20 minutes/5 times per day that Miss Lilah gets her G-tube feedings, she insists on watching this. If it wasn't for the joy this furry red creature brings her (especially when singing ABCs with any celebrity), I could strangle him with his skinny little string arms.

Facebook. Again, not really reading. But, since I got my iPhone and this is all I feel most competent with the Facebook app, I check it often. When I learned of the Nashville flooding via Facebook, I decided it was time to set down the phone and turn on the news.

I am ready for some new summer reads. Especially since I've taken a vow of filth (i.e., very little household maintenance) for the summer and have more time to read. The last really good book I read was The Help and I am currently reading The Furious Longing of God. I recommend both. Highly. Any recommendations for me?

Tuesday, May 4, 2010

Hello? hello?!..... that is me...calling out from beneath a pile of moving boxes. We have survived, or are surviving so far, anyway. But, it has not been easy. There is a reason 'they' say "moving sucks" and that's because it does. There are no two ways around it. In my usual attempt to control everything I can (except for my husband and children, of course:)....I just about killed myself getting everything all neat and tidy before the move. I was already at a 'neat and tidy' alert level of Orange (Homeland Security borrowed their coding from me), but kicked it up to a Red in the days before the move. We had the moving company pack and move, otherwise known as the only way for us to make it through this experience without some of us (me) afflicting bodily and emotional harm on others of us (P & the kids).

So, the movers show up, and I was pleasantly surprised because they were gentle in spirit (that is, I'm pretty sure they weren't violent-crimers) and only stopped to smoke every 30 minutes. And they wrapped things like a single 'Cars' car in 20 sheets of tissue. And my cake platter in 2 sheets. And packed wardrobe boxes with 28765 tiny things, so that I have to submerse my whole body in said box to retrieve anything. And were savy in their labeling, with three handy categories for my 2700 square foot house: 'upstairs', 'downstairs' and 'miscellaneous'. So clever, and useful, .....when you are trying to find your canopener. But really, they were sweet and I say this because, they are moving us again in 6 months (and I'm sure they are up on blogger world), and please use more specific labels!!!

The kids are good and we are generally excited about this period of time. There is something incredibly freeing about renting.....much less responsibiliy and so many good lessons about living in the moment and holding loosly the things of this world. I am reminded that God is the only constant and our family's trust in Him is what makes all the uncertainty of this life bearable.