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one, two, three

Three months almost seems like a blur...of the day to day. What stands out is three months of God's grace, goodness, and blessing on our family and this little one of His. 

Just needing to catch up on posting these pictures

Can you see the fullness on the top her head here?  I took this picture the day she was admitted for the shunt placement. 

Lucy is always full of smiles and loves to talk and coo. She loves her Mama as she is not nearly as animated with Daddy. Enjoys sitting in the Bumbo now too and being off her back. 

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. 

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.

Quick update

Lucy came out of surgery around 12:00 and we were able to see and hold her shortly after...so 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.

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

Letter from her Namesake

 Lucy has the honor of sharing her middle name with Josh's maternal grandmother.  Loraine is a wonderful woman of God and we look forward to sharing with Lucy as she grows all the reasons to be proud.  Loraine shared with us a letter to Lucy as she anticipates meeting her hopefully in the coming month.

 (3 weeks old)

Dear Little Lucy Loraine,

I am so anxious to meet you face to face.  I smile everytime I look at one of the pictures of you that Mommy and Daddy put on their blog.  You are so cute and your eyes are so big and bright!  I just want to kiss and hug you!

I trust you are growing and eating Mommie's good milk and staying away from any germs that seem to be around this time of year.

I am so proud to have you carrying on my name.  My heart was blessed and thrilled beyond measure when your daddy gave me a letter telling me!

Maybe when we come to GR in April grandpa Chuck & I will be able to see you.  You will soon be one month old.  WOW!

I love you dearly and so excited to meet you face to face!  We are still praying for you daily and your parents and siblings.  You have such a wonderful family to love and care for you.

I pray you can feel our great love for you!

Hugs and kisses,

Grandma Great Loraine

Trust

Before we left for Ann Arbor two and half weeks ago, some friends from school gave me a large tote filled with stuff to bring along. It had all sorts of fun stuff from snacks and drinks to gift cards, magazines, etc. One thing included was a large plastic cup with straw. Part of the design was the word Trust and the reference to Proverbs 3:5

"Trust in the Lord with all your heart and lean not on your own understanding;" 

I was surprised to see that a big hospital like U of M did not give out great water bottles or something to all their postpartum patients (like in GR). So I carried that cup with me everywhere. Drinking water all the time you would rarely see my hands without it during those 10 days. 

We have been home just over a week now and I'm still filling that pink cup multiple times a day. More importantly though I'm reminded constantly of the words it references...Trust in the Lord!

I was ready to be home and understood some of the challenges it would hold just integrating back into life with the other three kids, school, laundry, Josh back at work, etc. I was however unprepared for others. Tuesday afternoon we had Lucy at the Pediatrician and she had lost a full half pound just since leaving the hospital. The Doctor was not terribly concerned but knowing the emphasis that the hospital was putting on her weight gain even for discharge, left us feeling like complete failures. Especially me  who is the one providing the food and calories. I started to believe the lies of inadequacy and wept as I held my little girl who had clearly lost that half pound...not noticeable until pointed out. She was scrawny! 

Start Wednesday morning I'm not feeling well; chills and body aches all day long. Knowing it wasn't the flu, how did I not think of it until after 5 o'clock when the doctor's office is closed...Mastitis. Here's where my amazing husband swooped in and did everything for two days. I barely had enough energy or emotion to do anything but hold and feed Lucy. After a shot of antibiotics I was feeling much better. 

Friday morning Lucy had a follow up at the cardiologist. Everything still looks great, we head back again in a month.  Good news was she had gained two ounces already since Tuesday. 

Challenges of this week come and gone I know there will be more to come. We "Trust in the Lord with all our hearts" and know that he is Good!

         

The kids both wanted printed pictures of them holding Lucy to bring to school

Oh yeah and throw into everything Max dumps the chocolate milk mix all over the floor. The way he said "uh-oh" was priceless :)