Friday, April 29, 2011

Gracie's Shunt Revision Update

Tomorrow will mark two weeks since Grace had her shunt revision so I thought I'd better post an update! Grace's surgery went really well. The doctor replaced her shunt and catheter, but didn't have to replace the tubing that went into her abdomen so she didn't need any incision on her belly. This shunt is bigger and it sticks out quite a bit more on her poor little head. But it could potentially last the rest of her life and she'll grow into it! For now we are investing in some (large) hats.

The dark line to the left of her stitches is just leftover adhesive from her bandage. That stuff WILL NOT come off!

You can sort of see from this angle how much it sticks out from her head.

We went to the neurosurgeon this past week to have her stitches removed. The nurse practitioner removed the stitches and noticed the skin felt "spongy", so she had the surgeon come in and check it. He took one glance and said, "She's leaking spinal fluid." (It always amazes me how he can just look or touch her head and know what's going on. But he's been doing this for nearly 30 years!) Apparently the hole where the catheter was placed hasn't closed up yet. To try and explain it a little better, Grace has a small hole in her head that allows the catheter to enter her ventricle (brain). The catheter works kind of like a straw and pulls the fluid out of the ventricle into the valve (the straight incision right behind her ear) and down the tubing into her abdomen. The hole where the "straw" is hasn't closed up yet, so the fluid is choosing the path of least resistance and coming out of that hole and pooling around the shunt. What we are hoping for is that the hole closes and everything works as it should. What could happen is that the hole doesn't close or this means part of the shunt isn't working. We go back in two weeks to have it looked at again. If it isn't better, the surgeon will have to "tap" the shunt (stick a needle into the area, withdraw fluid and test the pressure) to see if the shunt is working properly. Please pray that everything works correctly! Anytime they have to introduce a needle into her, it can bring the risk of infection.

Other than this potential setback, she is doing so well. She's laughing, smiling and interacting with us like she hadn't before. Here she is giggling at the way Riley's head feels. Silly kids.


Thursday, April 28, 2011

The Problems You Create

I recently made a mistake. Shocking I know. But it was a pretty big one. I don't want to tell you what it was because it's embarrassing and it's sort of a taboo topic. Let's just say it may have involved my bank account, my bad math skills and my love of dresses in size 3T.

Darn you irresistibly cute dress!


This made things inconvenient, but wasn't really all that big of a deal. If a friend had told me that she made this mistake it certainly wouldn't change the way I thought about her. We are human and we all make mistakes. But unfortunately here is what went through my head:

What an idiot. How could you be this stupid? You are awful with money. You always will be. Hopeless. Irresponsible. Stupid.

Ouch. I would never talk to anyone this way, why do I think it's okay to tell these things to myself? But I do it everyday. And I think you probably do too. So let's make a promise. Let's promise to be kinder to ourselves and show ourselves the kind of forgiveness we would show others. Pinky swear?

Because you are more than the choices that you've made. You are more than the sum of your past mistakes. You are more than the problems you create.

Friday, April 22, 2011

Why I Hate Penguins

Some might think that penguins are cute, but I think they are evil birds wearing tuxedos stitched by the devil himself. Bud Light forever ruined penguins for me with their 1990's ad campaign. These commercials give me nightmares to this day!



Creepy!

Okay, well they can be a little cute...

Tuesday, April 19, 2011

Book Review - Max on Life


We have questions. Child-like inquiries. And deep, heavy ones.
In more than twenty-five years of writing and ministry, Max Lucado has been the receiving line for thousands of such questions. The questions come in letters, e-mails, even on Dunkin Donuts napkins. In Max on Life he offers thoughtful answers to more than 150 of the most pressing questions on topics ranging from hope to hurt, from home to the hereafter.
Max writes about the role of prayer, the purpose of pain, and the reason for our ultimate hope. He responds to the day-to-day questions—parenting quandaries, financial challenges, difficult relationships—as well as to the profound: Is God really listening?
Including topical and scriptural indexes and filled with classic Lucado encouragement and insight, Max on Life will quickly become a favorite resource for pastors and ministry leaders as well as new and mature believers.
Review:
In Max on Life, Max Lucado delivers Biblical answers to hard-hitting questions. These questions are not ones that he has come up with, but ones that real people have asked him.  Real, searching people with honest questions.  They can be very simple and also very profound.  Max answers all of them Biblical and most of his answers, if not all, include a Bible verse.  He goes through just about everything in life: hope, hurt, help, him/her, home, haves/have-nots, and the hereafter.  A lot of the questions are hard ones that have importance.  If you’ve got questions about life, Max on Life can be a valuable resource, a resource that will point you to the One who knows everything and His Word: God and the Bible.  Prayer and Scripture reading are the best places to find wisdom.   It’s a great book!

I was given a free digital copy of this book by BookSneeze in exchange for my review. The opinion is my own!

Friday, April 15, 2011

That's Not My Name

The kids were outside playing and Riley yelled, "Robin!" and started chasing after the birds. Brenna, close on his heels, yelled, "No! I'm Brenna!"

Thursday, April 14, 2011

Why I Love My Job


Today Riley asked me, "Do you like being a mommy?" I answered, "I love being a mommy." His reply was "Why? You have to do so much work!" Amen, brother. Amen.

I'm sure I'm mostly preaching to the choir when I say being a mom is a lot of work. It can be frustrating, hard, mind-boggling and sometimes just plain gross (who else cleans up all the boogers, poop and vomit?). I can spend day after day doing the exact same things over and over and still feel like I've accomplished nothing. Some days no one listens, every one's crabby and I'd like to just run away with the circus.

But...

There are the sleepy smiles first thing in the morning. The polite requests for more "hocklate milk". The dance parties. The smooches. Hearing them say, "please" and "thank you" without being prompted. The excitement over things like bubbles and going down the slide. The smell of baby lotion. And a gazillion other benefits.

When I watch Riley become so independent, Brenna do "ballet", or rock Gracie to sleep I think, "Please don't ever let me forget what this feels like." Because I love my job. 

I'm linking this up to "Why I..." At Vanderbilt Wife. :-)

Wednesday, April 13, 2011

To Make A Short Story Long


Each time something has happened with Grace, I am overwhelmed and humbled by the prayers, love and support that pours out from our friends, family and even complete strangers. I hope that I can be the same comfort to others when they need it. Thank you, thank you, thank you.

There may be some people who don't know what happened with Gracie and why she needs the attention she does. So I thought I'd start at the very beginning ("A very good place to start.." name that movie!). So here's the story...

Cutest. Baby. Ever.
I was having a routine ultrasound during my last trimester when a problem was discovered with Grace's brain. We were referred to a specialist, had another ultrasound and the problem was still there. For some reason, the ventricles in her brain were enlarged. On September 15th, I had an MRI to get a better look at her brain. On September 16th, we went into the specialist's office expecting to hear that the MRI showed nothing and it had all been a fluke. Instead we heard that our unborn baby had a severe brain bleed and would need to be born via c-section very soon to minimize the damage to her brain. On September 18, we welcomed our sweet Grace Elisabeth into the world - four weeks earlier than her original due date. We saw her briefly before she was whisked away to the NICU.


Over the eleven days Grace spent in the NICU, we learned that she had a stroke around the sixth or seventh month of my pregnancy. A stroke in utero can be caused by an infection, a serious injury (the example we were given was a baseball bat to the stomach!) or a genetic issue. Since I hadn't had an infection or injury and there was nothing found in our genetic testing, we don't know what caused her stroke. Blood clots from the stroke prevented the cerebrospinal fluid from draining properly and she was diagnosed with congenital hydrocephalus. Grace had a shunt placed at four days old to drain the excess fluid from her brain into her abdomen where her organs absorb it.  
Gracie with her patch, hanging with Hello Kitty

We were told that Grace should not have any type of mental delays, but to expect developmental delays and possible weakness on her left side. She does have some developmental delays and rarely uses her left arm/hand. She has optic nerve damage from the pressure in her brain, but we won't know how much her vision is impaired until she's 2 or 3 and can tell us what she can see. At this point we think her vision will be her biggest obstacle and the main cause of a lot of her developmental delays. (Most babies learn to roll because they see a toy they want to play with, if she can't see the toy - she has no incentive!)
Grace keeps her hand in a tight fist with her thumb tucked in between her little fingers most of the time.

We learned on Tuesday that her shunt has malfunctioned and will need to be repaired or replaced. She goes in Saturday at 2:50. The neurosurgeon will inject dye into her shunt to see where the blockage/malfunction is then perform the surgery to repair. She will definitely have an incision on her head (and have her poor little head shaved again!) and possible have an incision in her abdomen if the tubing needs replaced. She will be in the hospital for about two days.


If you are still hanging with me, thank you for reading our journey so far! I will post updates about Grace as we know more. Thank you so much for your prayers!

Tuesday, April 12, 2011

Worn Out


It was a bittersweet day. A long day. An emotional day, in both good and bad ways. This morning we found out Gracie's shunt is not working properly and she will need surgery. We knew this was likely. We were told to expect it. But I'm not sure anything prepares you for finding out that your tiny, baby daughter will have a major surgery. AGAIN. I just want to wave some magic wand and have all of this go away. I want her to feel good all the time and roll over and sit up and do all of the things seven (!) month old babies do. I have so much more to say on this. But I can't seem to form my words right now.

On the other hand, today was Kindergarten Round Up. Wow.  Can it be possible Riley is old enough for kindergarten? He was a little nervous at first because he didn't know anyone. But soon after we sat down in the school's gymnasium he spotted two of his friends from preschool. And met a new friend. And now I'm pretty sure my son and his buddies have a reputation with the teachers before school has even started. Once he was with his friends, it was like he was a new boy. I was so proud of him when he marched down the bleachers to head off with the teacher - not scared at all, just ready for a new adventure.

Oh! And his new friend? His mom just happens to be the nurse that took care of Gracie while she was in the NICU. We had no idea we lived just down the road from each other. Small, small world.

Tonight I'm going to count my many blessings and head to bed.
“Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:28 

Thursday, April 7, 2011

Tuesday, April 5, 2011

March Madness


Today I was standing in front of the trash can holding Grace and she threw up. Some of it went on my shirt, but a good part of it went directly into the trash can.

Two points for Grace, mom with the assist.