Sunday, April 21, 2013

Great Grands

 Over spring break I took the kids to see my Grandparents. I meant to post these pictures last week sometime and then our little Lu demanded some attention :) Even though they live in town, we really don't go to visit very often. It was the first time for them to meet Lucy and it had been a really long time since they had seen the other kids too. I love this picture of them with four of their great grandchildren. This is my Dad's parents, Carl and Virginia.

Josh's grandparents also stopped by that week to meet Lucy for the first time. This is Loraine who Lucy is named after. 

Saturday, April 20, 2013

27 hours

27 hours after they picked us up to take Lucy down for her surgery, we were discharged from the hospital.  Lucy is so strong and we are so grateful for her resiliency as she recovers from her second major surgery in the first 9 weeks of life.  

Words alone fail to explain the complete roller coaster of emotions that we have felt in the last few days.  Exhaustion, panic, hope, fear, relief, love, thankfulness, frustration, peace.  None of those words tell the whole story.  Maybe the only word that comes close is grace.  God's grace has sustained us in our weakness.  Where we have had no strength, he has been strong for us.  Where we have been confused, frustrated, angry, he has been peace for us.  We are unworthy of all that God has called us to be and unworthy of the blessing that Lucy has been to our family.  

We are certainly not out of the woods yet.  8-10% of shunt repairs see some sort of infection that involves a follow-up procedure and 50% of shunts fail in the first year and need a corrective intervention to be made (that percentage jumps to 60 in the first 3 years).  Lucy will have an additional surgery in another 8-9 years to lengthen the drain tube further into her belly.  

Pray with us for continued peace.  Pray for rest.  Pray for keen eyes to watch for warning signs of the infection and possible shunt failures.  

Below are a few snapshots of the last few days (phone pictures only in our unpreparedness)...

Just after surgery, still in recovery

So, a lot of people have asked what it looks like...everything is internalized. You can see the shunt protruding above her ear and from behind her ear there is a very small tube that runs along the side of her neck and down the front into her belly cavity where the fluid is then absorbed back into her body.

a few hours after being back in the room we noticed this jar inside a baggie at the end of her bed. "What is this?" Josh said
Oh, her hair...totally didn't cross our minds that we would have any interest in saving this. Technically I guess it was her first hair cut :)

Here we are, ready to go home...24 hours after brain surgery. Is that crazy or what?
We are so blessed!

Rejoice in the Lord always, again I say Rejoice.  Amen.

Friday, April 19, 2013

Quick update

Lucy came out of surgery around 12:00 and we were able to see and hold her shortly different than the heart surgery. Good news, there were no foreseen complications during the surgery.  She is sleeping peacefully now with a bit of morphine. As soon as she is a little more alert I'm sure she will be ready to eat!
Pray specifically that she doesn't develop any infections in the next few days and week and that there would be no other bleeding or residual affects of the surgery. 
Jack might be a little jealous of the mohawk she has from the shaving of her hair :) I'll try to take a picture to show just what the shunt looks like from the outside. Once her hair grows, it will be hardly noticeable. 
Thank you friends for praying for Lucy with us today!

Hearts and Minds

The Lord must have great plans for Lucy.

Last night, Lucy had her 2 month appointment with her primary care doctor and he was concerned that her head seemed to have grown more than it should have in the weeks since our last appointment.  He ordered us an ultrasound downtown at the children's hospital.  We came to the hospital, nervous, but not too concerned.  During the ultrasound, they identified a buildup of fluid on the brain that was causing the head to swell.  This is technically considered hydrocephalus and can be very serious if untreated.  Our doctor was on the phone to us moments after the ultrasound and had us admitted overnight.  In the whirlwind hours since, we have had a CT scan on Lucy's head, echo cardiogram on the heart, scattered a few hours of sleep over night for us and Lucy, and she is currently in surgery.  Her surgery involves going into the brain to place a shunt that will drain into the belly cavity.  This shunt will stay with her as she grows.

The neurosurgeon explained tons of risks and possible complications.  It sounds like the shunt itself has a 50% failure rate where follow-up procedures are generally required (less invasive than this procedure).  8-10% have infections that could develop days to weeks after we leave the hospital.  We will be given a ton of warning signs and instructions to review and watch for.

Please pray with us.  Having 4 months to prepare for the heart surgery was a blessing looking back. We are overwhelmed.  God has a plan for our daughter and for our family.  We pray that we can live the story that the Lord has for us.  Give us strength, Lord.  We pray for wisdom for doctors, surgeons, and caretakers.  We pray for our ability to pay attention and remember the things we need to remember as we are inundated with information in the next 48 hours as we are working on almost no sleep.  God has chosen symbolically and literally to use Lucy's heart and mind to help shape ours.  May we bring glory to God, who sustains us when we are at our weakest.

Lucy's recovery should only be a few days at the hospital, we are grateful for that.

Be still and know that I am God.

Tuesday, April 2, 2013

Easter and circle skirts

He is Risen!
We had a wonderful weekend celebrating with family what our savior has done and that he lives today!
By the time I thought about taking pictures it was after lunch and Max had ketchup all over his shirt. I new there was no chance of getting all four together so Josh grabbed the boys and we took a few pics really quick...and since I'm usually the photographer I forgot to jump in one myself.

I dyed matching fuschia shirts and made circle skirts for the girls. Eleanor was sooo excited about matching her little sister. She kept giggling too at the seriously small size of Lucy's skirt that would surely fit on her American Girl doll.

my red lipped beauty