Saturday, January 31, 2009

Hurry up and wait

Hi, everyone! I'm anxiously awaiting dinner from my Mom-in-law! I told her that she didn't have to bring me anything, but when I heard that it was homemade fried chicken and potato salad, I told her to get here fast (well, not in so many words...).

I'm supposed to be doing homework, but instead I've been facebooking and reading email. Oh, and holding Maddy for a while too.

Maddy is acting much better. She looks a lot better and she's resting much more comfortably. Nobody is saying anything about going home, though, and I imagine that she'll have to wean off the O2 a lot more first. Last night we had to go to a mask because she was only breathing through her mouth, and that ups the o2 to 4 L, so that she doesn't breath in too much CO2. They went ahead and brought in a blender to give her more pressure, so that ups the o2 more than it would just straight. For those of you medical junkies, she's keeps her sats up if she's at 65% flow right now. She drops a bit when she sleeps.

Thanks to Lisa for keeping the girls tonight so Glen can come see us, and thank you all for praying for us. I must admit that last night I was a little nervous, because I know how quickly things like this can go downhill. Today, it really seems like she's doing a lot better. I am very relieved that the pulmonologist told me to take her in again. It's scary just sitting and watching her color constantly and wondering what the whole story is. She was a pretty sick little baby yesterday.

In a total aside, I've been laughing about this for some time. I just get cracked up at my emails sometimes. I'm thinking of starting a list of "You might have a child with spina bifida if...." In the last 24 hours, I've had the following email titles (from my parent's spina bifida resource list) in my box: "Cone enemas," "Order Balloon Enemas," and "Rifton Blue Wave Toileting System." Of course, my trash has emptied a time or two, but I can about guarentee that there was one labeled "Bowel Program" too. If you'd like, I can keep you updated on all things bowel and bladder! HeeHee

In the hospital

Hi, everyone, We're getting all settled into our Peds ICU room in St. Vincent's Children's Hospital in Indy. Maddy wasn't keeping her oxygen saturation up high enough, so we're keeping a closer eye on her here.

Her breathing is rather rapid and she's "retracting" with every breath, meaning she's pulling hard. But we're down from 2 liters of O2 to 1.5, and she's SATing perfectly with that. Her ABGs came back great. She's starting to look much more pink. She's very grouchy, though, because she's getting no food until tomorrow. They want to keep her stomach relatively empty tonight just in case they need to put her on the respirator.

I have no idea how long we'll be here, but I have a brand new Grisham book that Glen got me for my birthday, and can't forget the accounting textbook. So I'm good... :)

I'll update more today!

Friday, January 30, 2009

Maddy's a Drama Queen

I know the initial drama of Maddy's birth and subsequent NICU stay is a thing of the past, but thank you for continuing to pray for Maddy during her various struggles. We appreciate it more than you know.

Maddy has quite a time these last couple of weeks. First seizures and a severe bladder infection, and now RSV. She tested positive for it yesterday.

Many of you know the struggle that I've had getting the Synagis shot to prevent RSV. Synagis is not a vaccine. It contains antibodies. It wraps itself around the virus to do away with it. Maddy has several risk factors that qualify her for the shot, and you only need one: She has chronic lung disease, is on oxygen and breathing treatments, has DiGeorge syndrome which causes a lower immune system, has a sister in school, etc.... But it took us forever to get it approved, and then even longer for our doctor's office to figure out how to get the shot. I've been working on this since October. An hour after we got the test results yesterday, Precision Rx, who is providing the shots, called to confirm shipping. Grrr.... She can still have the shot and it will help her, but I'm a little upset that I had the major runaround that made this whole process take so long. Lesson learned: Just because someone says they're working on something does not mean they are working on it. CALL EVERYDAY until it's resolved. Thankfully, last week I finally got an awesome treatment nurse that got the ball rolling and will have it by Monday.

Anyway, the good news is that Maddy's lungs sound awesome and her color is good. She is labored in her breathing a bit more and her oxygen saturation is in the 80s, so we're keeping a good eye on her. I've put the monitor back on her (wishing we had the oximeter, though!), and last night I slept in the living room with her, with the lights on so I could check on her through the night.

A day in the life....

Tuesday, January 27, 2009

Where we are with neurology (Update on Maddy)

Hi, everyone, So it's been quite a while since I've sent out an official Maddy update. This one is coming about a week late, but for those of you who have known what is (was) going on with Maddy, we surely have appreciated your prayers.

To get everyone on the same page, here's a quick (yeah, right!) recap.

Sometime the week before last I noticed Maddy's mouth twitching and her one arm jerking. Thought it was a fluke. On Sunday morning (1/18) we were sitting with Jed and Alyssa in church, and Maddy was being loved on by Alyssa when Alyssa noticed a repeat performance, plus some eye rolling. Still didn't think too much about it, because it only lasted about 15 secs or so. After another episode on Monday, I called the neurosurgeon with the suspicion that she was having seizures, and they agreed after I described what was happening. Took her to the neurosurgeon on Tuesday to have her shunt checked (head ultrasound and shunt x-ray series), and everything checked out! He gave me a referral to see a neurologist, and they didn't schedule me until February 17 (four weeks out!). At that point, she still had had only one a day. By that night, though, she had three more, and they were lasting longer, taking longer for me to feel like she was really "there." (Mind you, she didn't stop breathing or anything, so they weren't nearly as severe as they could have been, but very scary none the less.)

So at 11:30 pm, I took her to the ER. I had no instruction whatsoever for what to be worried about, or what, if anything, to do when it happened. I was emotionally and physically exhausted, and totally had no idea what to do. (But don't worry, I didn't flip out at the ER! I'm don't do that easily....) The ER doctor called the neurologist on call (where we were scheduled to go in four weeks) and was told that it would be ok to prescribe Keppra (SO much safer than phenobarbital, I was told today), and to call first thing in the morning and tell them to move up my appointment. We didn't get the prescription back until Wednesday night, and she had 8 seizures on Wednesday, last more like two minutes. After that dose, though, the seizures were less frequent and much less "severe" (though they weren't ever really severe compared to the possibilities). Yesterday, she had no seizures that we saw.

Yesterday I took Maddy to our family doctor because of a 103 fever, and he ran CBC, chest x-ray, and UA, and what do you know but that that little bugger has a really bad bladder infection to boot. She has vescicoureteral reflux (reflux from her bladder to her kidneys) and is cathed three times a day, so it's really amazing that she hadn't gotten one before now. Anyway, I'm very grateful that the strong antibiotics have done the trick so that she didn't have to be hospitalized for IV antibiotics.

Today, I took her to the neurologist today, and liked her a lot (that always helps!). She upped her Keppra dose to the correct dosage, so the seizures shouldn't happen at all. She gave me instruction for when to take her to the ER. She also ordered calcium levels to be checked again (You may remember that she had low calcium levels from birth due to her DiGeorge syndrome, but had come off the calcium after her levels came up), to rule out hypocalcemic seizures. And then we'll have an EEG on February 6th.

The poor little girl gave the phlebotomists quite the workout trying to get her blood to flow for the ionized calcium draw. They needed 4ml and they couldn't get it to flow for that long. We were at two labs in the end.

So that is the quick version (heehee) of our lives the last week or so. On top of all this, I was trying desperately to get last week's homework done (due Wednesday night at midnight). But the facilitator told me not to worry about it and to deal with Maddy. I worked all day Wednesday in between seizures and calming her down, and handed my homework in only an hour late! I heard that Uncle RB was rather proud of me! :)

After being gone all day to the doctors and labs, I need to get this week's work finished! Please continue to pray that Maddy will have a peaceful week and that we'll find the answers we need. I decided when Maddy was about, oh, one day old, that I couldn't flip out about every single thing that she handed us. Some weeks I think I would be flipping out every day. God has been good to give us peace and calm through this new rollercoaster. His mercies and strength are perfect and new every morning (nothing like cobbling two verses together!).

Wednesday, January 14, 2009

Picture post marathon #4

I didn't discover until too late that we didn't have a gingerbread man cookie cutter, so we made bears instead. We had planned to ice them, but we ran out of time (this was the week of our Christmas program). Dough was pretty sticky, and it took us a while to get us smooth, but it was fun!


Tuesday, January 13, 2009

Picture post marathon, #3

In my endevours to get caught up in posting pictures, I found Carli's school Thanksgiving pictures. The Kindergarteners were pilgrims and the first graders were Indians and they had a feast together. There were the traditional Thanksgiving foods, such as turkey, potatoes, squash, etc., and the principal Ms. Wiles (what an incredible woman. She's a blessing for sure) made something like 12 homemade pumpkin pies. My mom and I went to help out in the classroom for some of the activities.

Not sure why these pics are blurry, but here goes....

Carli and LaJaunte (He's such a cutie. I enjoy reading to him when I have the chance to go in). I put Carli in a dark blue dress so that she'd look a little more pilgrim.

The girls

The whole gang

Ready to eat.

Sunday, January 11, 2009

Happy Birthday, Dear Olivia Grace!

Our spunky and percocious little girl just turned 3 years old today! It hardly seems possible. I can't believe it, but I can actually say I got her potty trained before she was three! I never would have believed it a month ago.

Enjoy the trip down (my) memory lane! Happy Birthday, Livy. I love you so much and I'm tinkled pink to have you as my little girl.

A break from the pictures for a few Carli-isms

We were just praying for the Bigger family (I don't know them, but we got an email requesting prayer for a young man who just lost his wife and two little children when his van slid off the road and into a pond. I can't imagine his pain right now. Please pray for them as well). Carli prayed for him (actually for the ones already in heaven, in her simple little way), and then wanted to pray for Granddad, as she does often. (I'm not sure if this is something we really need to talk to her about, or if we can wait til later on.) She prayed that he would be kind and good and comfortable.

I kept Carli home from church tonight because she had a low-grade fever and sore throat. She just said, "I'm going to go potty and then maybe my throat will feel better." If only that was the cure!

To Madeline: "Hi, Cutie Pie! Are you a cutie pie or just pie?"

Picture post marathon, #2

Madeline and Daniel and Brianna, my brother's little ones. Do you see Maddy and Dan'l holding hands? :) Madeline has changed so much since then. We were noticing subtle changes in her physically, and of course we noticed that she wasn't anywhere near Daniel in development (he's only 2 weeks older). Since Maddy's surgery on November 26, she has come so far...smiling and cooing all the time, and even starting to giggle a bit.

Picture post marathon, #1

I just sat down to upload a few pictures only to discover that there were over 400 on my computer. I discovered that my eldest daughter took a ton of pictures. We had pictures of all of Granny's Christmas decorations and quite a few other things. Needless to say, that took me a while to sort through! I have picture from way back in early November, so I'm going to be posting in stages. So keep coming back! :)

These two darling pictures were taken the day before and the day Daddy died. Kind of made me get a lump in my throat.

Thursday, January 8, 2009


Dear Melonie Chapman sent me a piece of flair that says: "Of all the people I know, you're one of them." Doesn't that sound just like Daddy? Or Jordan!

Well, I'm having trouble getting into gear this morning. I slept from 6 pm until 7 am after being up for 60 hours straight with only two very brief naps! Yes, that means I didn't go to bed for two nights in a row. Ok, yes I did. On Tuesday morning, I slept from about 6 to 7 (one of the brief naps)!! I'm hoping that my homework doesn't take so much time everyweek.

Off to take Maddy to pulmonologist today.....

Tuesday, January 6, 2009

That's better....

...Sorry about that.


I just added a playlist to my site. Please bear with me while I figure out WHAT it's doing! It's playing a song I've never heard before, and I can't find it to unload it from the list.

For you, Mommy...

...and anyone else who wants to listen in. Don't forget to scroll down to the bottom of the page to pause my playlist music....

I can't wait...

Gratituesday--Christmas Blessings.

It's time for some long overdue thank-yous. I've sent some thank-yous, but these ones deserve public recognition! :)

--I am grateful for...Mommy, Esther, Grandma, and Lisa for hosting us over the Christmas holidays! We enjoyed every minute (except when we were sick after eating too many of the yummy treats!). Let's do it again!

--I am grateful for...our Sunday School class (New Directions) for the big bag of gifts. I love the picture frame and stepping stone to remind me of Daddy, and the kids have played a lot with their felt Bible story. Thank you for all of your support and love and care over this last year. Here's to a calmer 2009! :)

--I am grateful of the other SS classes (I'm not sure of the name??) for the three huge boxes of groceries and the grocery and gas cards! I had fun puting it all away. You'll never know how much we appreciate it!

--I am grateful for...our anonymous Christmas angel who blessed us with $900. I can't put into words how "hugged" I felt when I opened that envelope and just counting more and more Benjamins! :)

--I am grateful for...each one of you who have been the hand of Christ to us through a very difficult year.*

To join in the Gratituesday event or just read about abundant gratitude of others, head on over to Heavenly Homemakers!

*Just to clarify, I never have felt for one moment that Madeline's birth was anything but a blessing. It may be hard for some to understand, but if I were given the choice to have Maddy whole and perfect, it wouldn't be an easy thing to accept. Obviously, I hate thinking about what she may be facing, and I would never want her to be in pain, but all of her issues--complete paralysis from belly down, head just now getting back to normal after the last episode of hydrocephalus and shunt repair, severly curved back, turned feet, neurogenic bladder, chronic lung disease and all--make her who she is, and it would almost be like being handed a different baby and someone taking mine should she suddenly not have any of those issues. Ok, that was a bit convoluted...Maybe my coping mechanism? At any rate, I feel that very deeply. I'm not so sure that I've quite gotten to that place with Daddy suddenly leaving us for Heaven.