Sara Rose

Merry Christmas Everyone!

2011-12-22T16:46:00.000-06:00

Merry Christmas!! How have you all been? I've been great!

Me and Emma Grace rockin out a tune

My favorite way to smile - all out!

My mom got us out here to take a pic for the Christmas card, I sure wish she would get one she likes

At some point in the day, something is going to be worn on my head, today, a bike basket.

Don't make me ask twice

Shopping for a Christmas tree with Pops and Sisters

My sisters and I have contracted a rare form of chicken pox that only shows up at Christmas time

Hanging out with Grandpa

Come to find out, I need glasses after all. Mom and Dad found some on sale and said I would grow into them.

The real question is - is mom shrinking or will her girls ever stop growing so fast?

Wind, rain, snow, cold, doesn't keep us from playing outside.

Just woke up, got a little bed head going

Let's see, breakfast - check. Church - check. Come home -check. Sit on the ground in church clothes and play with Buddy - check.

My own gingerbread house I'm eating... er, I mean, decorating.

The 6th major food group - Cheetos

We decided to let these hobos make a shelter and live in our front yard. I'm just letting them know who is in charge.

Ok, I'm ready, why are we still inside mom?

Another usual occurrence in my life - 1 day = 13 outfits. Don't blame me, I'm a girl.

Cookout in the front yard, how do you tell Buddy no when he wants to help you lick the jar of fudge clean. I mean, look at him..

I know for sure before I get this spoon in my mouth mom is going to show up and put the kibosh on this little party

Uh oh, here she comes, gotta go

Camping with some friends at a park

Long day

I love the trampoline, especially when I've got it to myself

Race day

Getting ready

What I do while dad runs the race

Yeah, school. Boy this is fun!

No caption necessary

I love water!!! I love to get wet!! It makes me crazy!!

Eatin a snack with my cuz

Summer Fun

At one time, dad did think this was a good idea

Have you ever heard of ice cream? It's fantastic!

Alright, dad, I'll keep the car running, I want some more of that ice cream stuff. Hurry back

You don't even want to know this side of me sucka...

A few snapshots into the fun times of our life with Sara over the second half of this year. Lot's of good times. She has continue to grow and develop and do great. She takes physical therapy once per month and speech therapy once per week. Her checkups and CT Scans continue to be good. We are getting very close to being 2 years since our last hospital stay. The neurosurgeon said there is enough tubing for the shunt in her abdomen we should not have to worry about a shunt extension for several more years. Our family has a some-what goofy sense of humor, and we want to make her shunt as normal a part of our life as possible. And one of our daughters fell one day and we jokingly asked her if she broke her shunt. Now, that is a regular question when one of them falls. Sara has picked up on it and when she falls she will ask the same thing. Very funny

Sara's speech therapist is very optimistic about her progress and feels as though she will eventually be able to say and pronounce any word she wants. Especially as she gets older and can understand and practice particular exercises. Even though she can be hard to understand, her vocabulary grows each week, her pronunciations improve in tangible ways weekly, and her cognition (ability to think and understand) continue to amaze all of us. She is one sharp chic! Very observant, incredible memory - if you do something once you better be ready to repeat for several days. She will remember very small details about something we have done together and bring them up on her own.

She also has a very strong will and quick temper. Even more than her sisters. Her most hated word to hear from you is "no". Even if you are not really telling her "no", if she thinks your telling her "no" - watch out. Get on the floor and cry, scream, kick, pull hair, let it all hang out at the house, store, church, family, whereever - oh yeah baby, you betcha! How much of that is because of all she has been through compared to being a typical 2 year old? Who knows. But at times it can be trying and at times it can be quite funny. I blame the Cajun side of the family. But that's easy for me, I'm typing.

She is truly a joy and one of our greatest joys is watching her two older sisters with her. After spending 5 months of her first 9 months in the hospital, her mom and I being so protective when she got out, and her developmental delays - her sisters have only really gotten to know her this year. And they genuinely enjoy her. Now, they are big sisters too, they know how to play the system and get her out of their hair when they need her to (Hey Sara, why don't you go find dad and bring this to him), but they also would do whatever it took to protect her and help her through life. It's really cool. We did this thing as a family before thanksgiving of writing what we are thankful for each day for a few weeks and took them out and read them the night before Thanksgiving. And both of them talked about how thankful they are that Sara is alive and with us.

And we are too. We continue to stand in awe and amazement at how God has been so gracious to us. We celebrate as many do this Christmas that God's grace appeared to us. Paul said it well to Titus - But when the goodness and loving kindness of God our Savior appeared, he saved us, not because of works done by us in righteousness, but according to his own mercy, by the washing of regeneration and renewal of the Holy Spirit, whom he poured out on us richly through Jesus Christ our Savior, so that being justified by his grace we might become heirs according to the hope of eternal life. Titus 3:4-7 ESV

And His Grace continues to flow to us each day to sustain our physical and spiritual life. It's such an enjoyable exciting journey we are on through life together. We thank God for family, church family, and friends we get to journey with. And we hope and pray this Christmas you are all well and blessed by God through Jesus Christ with your families on your journeys! Have a great Christmas season and fantabulous New Year!!

Happy Birthday Sara - 2 Years Old!!

2011-05-25T09:54:00.004-05:00

You can check out some pics and video on facebook at these links

Pics

Video of Sara saying her name and her cousin, Elizabeth's name

Video of Sara singing and smiling

Sara in Spring

2011-04-12T22:42:00.007-05:00

All continues to go well in the life of Sara Rose! We have had a greater winter and spring. Hardly any sicknesses for any of our girls, but especially Sara. It's hard to believe, but it's been over 13 months since she was in a hospital. God has been very gracious and good to us and we praise Him for that.

Sara recently had a check up with the neurosurgeon and he was very very pleased. Her head is a good size, she is a good size over all. She is developing well. Sara is about to begin speech therapy. She had between 1-2 dozen words, all one syllable. She has very good cognition - she knows what she wants and understands you. But she just can't put it into words. The therapist thinks if we hit it hard for the next year she can be caught up by three.

Sara is a very happy, smiling, laughing, squealing kid. She also has a little temper, which I am sure comes from her Cajun mother. It's really hard to put into words all the wonderful little things about her. But if you knew her, you would be amazed at how far she has come and how much fun she is. At church I call her a little politician. She walks around saying high to everyone sitting around a table eating. It's really funny.

The Neurosurgeon said she probably wouldn't need a shunt extension for 3-4 more years and that may last her another 20.

How can you continue to pray for Sara? Praise God for all the wonderful ways He has worked in her life and made her such a joy to know and raise. Pray for her speech therapy to be effective. Pray for her continued fine motor development.

Thanks for checking in - we are doing great!

This is the funny side of Sara, she will walk around doing this kind of stuff all the time.

Ooh, I've discovered water hoses and I like them!

A girl living in the country has to have overalls!

I don't even know what to say

We looooove being outside!

We love our new dog - Buddy. Our last one was hit by a car last October. Buddy is awesome with the kids, and even though still a puppy he has already learned to be very very careful around Sara. Well, he learned that is better than facing the wrath of a momma.

Big girl on a swing

Emma Grace and Sara

Sara has grown very attached to her blanket

Another one of Sara's favorite tricks - looking between her legs

Helping mom cook in pj's and a tutu - we think she learned to dress from Emma Grace.

Froggy boots and no pants - what a great day to play outside

Ready to go play in the snow. Got about an inch one day - not bad for La. She hated it when it was snowing, enjoyed it a ton the next day. We did find her face down a few times in the snow.

Look mom, a new hiding place

Helping mom cook - would you like stewed, fried, or boiled?

Leave this kid alone and it gets quiet and this is going to be what you find. She is a mess maker beyond compare!

Now what exactly is this thing I am sitting on?

Merry Christmas!

2010-12-25T07:14:00.007-06:00

All is well with Sara Rose and her family. We have had a wonderful Christmas and past few months since our last update. As you can see in the pics, she is doing great and they only tell just part of the picture. She is growing up into quite a young little girl with a ton of personality. Her sisters are having loads of fun with her and she with them. She basically follows them around all day, and they like it. And when they don't, she will wander down the hall and find a bedroom door closing in her face. To which she usually replies with a grunt of frustration.

THE LOOK

This is the look Sara began to give us around thanksgiving and has proceeded to give just about anyone and everyone who walks up and talks to her. She will sometimes hold it for several seconds and then bust out with a big smile. Or, she will just give you the look until she decides not too. She will also sometimes move through her routine of faces. She will give THE LOOK, then make her an O with her lips and face, then blow at you and has added sticking her tongue out. Very funny.

I tried to capture some of her personality and looks on a few short videos. You can find them here and here.

Developmentally, Sara is doing great. She is walking so well her therapy has moved from weekly to monthly. We are working more and more on fine motor skills and trunk strength. She is getting stronger and stronger each week. Her docs are happy with how she is growing, she is right about average in height and weight for an 18 month old. It takes about 2-3 years for a preemie to catch up, and she is right there already. She is communicating more and more, she has words and can say syllables for mom, dad, sissy, shoe, sock, paw paw (not maw maw which drives maw maw nuts), more (her favorite word), no (again - she is very clear when she doesn't want something), and more that I can't remember off the top of the head.

We are noticing her remembering things done days before more and more. Remembering how things are done, where things are. She is stacking blocks with help, but still loves to unstack them the most with a violent giggle.

What captivates us the most about Sara is her charming personality. She is just so lovable, sweet, and funny. She loves to interact with everyone. She walks around laughing and squealing everywhere. And seems to know she is funny and likes it. It's hard to sum up all she is doing in a few paragraphs, just know she is doing wonderful. Thanks for your continued interest and prayers. We are having a ball!

Playing in the leaves with big sisters.

A little tiara that stayed on her head for long enough to snap this, a few seconds later it was coming off.

Her sisters are supposed to be folding towels, it turned into a wrestling match. I'm not sure who is winning.

This started so simple, playing with Sara on my stomach that turned into a sister dogpile.

Two Steps Forward, No Steps Back

2010-09-14T17:00:00.000-05:00

Hi again from Sara world. The little gal is just improving by leaps and bounds. She took her first two steps this past Saturday night. We've been waiting for it. She has continually gotten stronger and closer to walking. She started standing up on her own with no help. Then she could walk with you holding one hand. Then Saturday night she took a little step to balance herself, and then one more to the cheers of her family.

As with any kid though, she can get around faster by crawling and so she still prefers that. In fact, she was all the way in the back of the house with Jennifer one morning while she got ready, heard Abigail playing the piano all the way in the front of the house and took off to hear the music. She loves to dance and bob her head to music. Trying to get that on video. Especially to Barney songs on TV, much to the chagrin of her older sisters who wouldn't be caught dead watching the purple one, even though they could sing all his songs 3 years ago. Kids....

Sara was released from seeing the heart doctor earlier in August, one doc we never have to see again unless there is a problem.

She is also communicating more and more. Several new sounds this week. She has little sounds and words that she uses and we are learning what they mean. In fact, Jennifer has been teaching her cold. Touching something cold to her, saying brrr cold, making a little sound with her lips. Well, Sara will then blow through her lips making them flap together for cold. Yesterday, grocery shopping, Jennifer looks down at Sara in the buggy, she has her face planted in a bag of frozen corn on the cob and is making her sound for cold. Very funny.

This kid loves to eat. Doesn't have any food allergies so far, and has started drinking milk. Of course with your third you are much more lenient than with your first, so she has eaten more ice cream and candy than our other two ever dreamed of eating at this age. And you should see Sara go when she gets some sweets in her mouth. Giggling, laughing, smiling - how can you not keep them coming.

Contrary to what you may think with us having a blog filled with pics, we are actually not a very good picture taking family. And now that life has become the normal good busy, not the hospital bad busy, we are back to our non-photogenic selves. So I tried to take a bunch last night. And she was not too impressed with the flash.

By the way, these pics were taken around 10:00. Sara has 7 teeth and we think she is working on some molars, so we are in full-bore-teething-lack-of-sleep. Awake from 9-1 last night.
Yeah. fun. We actually have a few cute videos of her eating a piece of chocolate and clapping with joy and throwing all of the clothes out of the laundry basket. But I can't get the technology to cooperate. I'll figure it out.

Summer time horse lessons, leave house at 7am, Sara plays outside in sun during lesson, and this is what you get on way home. Tooooo tired. I am quite sure Jennifer wasn't taking this pic while she was driving. I am quite sure she got Abigail to take it. Maybe if I say that over and over it will come true.

Waiting to take CT Scan one morning. She couldn't have anything to eat and just could not figure out why we were not giving her a bottle. But thankfully, she was still enough she didn't have to be sedated and got to eat really soon after this. The results of the CT scan were great. The brain has developed a whole lot since her last scan. The Neurosurgeon was very pleased, we don't have to go see him for 6 months!

Just a couple of stories that we get every now and then that remind us of how much God has blessed us with Sara and how far she has come. One nurse who had Sara her first few nights in NICU after she was born ran into someone a few weeks ago who sees Sara often. The nurse asked - Is Sara crawling yet? This person said - Crawling? She's about to start walking! Amazing, said the nurse. Her first few nights this nurse thought Sara wouldn't make it at all or would have severe cerebral palsy.

One heartbreaking sight was the day she took her CT scan. There was another mother there whose son was 4 and had the same degree of brain bleeds as Sara and was not able to walk yet or communicate well. He was born a few weeks earlier than Sara. He had a twin sister who was still not able to sit up. And while our hearts were broken for this mom and praying for her, we were overwhelmed at how much God has blessed us. Why us? Why has He been so good to us? I don't have the answer. But I will sing His praises and tell others of His grace, mercy, and love. Seen partly through Sara. Seen fully and gloriously through Jesus and the cross!

Crawlin', Cruisin', and Mission Trippin'

2010-07-25T15:38:00.005-05:00

Cute and...

....mischievous - scary combination

The Fun Times with Sara continue. It's been a great summer and Sara continues to thrive. So much improvement to speak of, I hope I can remember it all. We got 4 teeth, about to be 5. Doesn't matter though, she quit eating baby food a month ago. She's basically eating whatever in small bites and gumming it to death. She likes cheese and yogurt, so no dairy allergies. She can also eat rice, so no rice allergies. She likes most of what we give her. The only thing she really turns her head at is anything she can't chew, like already mushed up. She loves oatmeal, buttered bread and jelly, and fruit bars. And ice cream and a little bit of chocolate.

Sara is also crawling all over the place. She can easily pull up on anything and when she is up she likes to cruise. She is working on standing up on her own without holding on to anything and may get that any day. Once she stands, she will let go and can balance for 5-10 seconds. We are very pleased.

As a family we went with a big group from our church on a mission trip this summer. We got to go and help a church put on a Vacation Bible School. Sara did great. Most of the pics are from the trip. Great week for our church and our family. The kids were awesome, all of them.

Enjoy the pics, thanks for the continued prayers. Just keep asking God to bless with health and development!

Praise the Lord! For it is good to sing praises to our God; for it is pleasant and a song of praise is fitting. Psalm 147:1

See my teeth! Man do I get some good food now!

Dad's job while mom teaches VBS on the mission trip - pour yogurt on my face and then rake it in my mouth with a spoon.

Count Sara - our little vampire. Thankfully this one sleeps all night.

Playing with mom at the block Party

Visiting the swamps of La on the mission trip

Sara's sisters and Abigail's sense of humor

Summer Fun

2010-06-19T16:01:00.012-05:00

What a cutie! These were taken at Vacation Bible School, thanks Stephanie

And I know I'm cute, that is what's so ridiculous

All of us except Abigail at VBS. Our VBS blessed us this year by making Sara the recipient for the missions offering. It was unexpected and very generous - thank you all very much!

Wait, didn't June used to be a month? Now it's like a day, maybe two. Wow what a fast month! Sara did great through vacation and Vacation Bible School. And has continued to progress well in her development. She got several good reports from various medical folk:

Assessment Therapist - she sees her every six months. When she assessed Sara last August Sara was rated as a 3 (which is the worst) in every category of development. Now she has no threes! The therapist was very very happy.

Pediatrician - he thought we had switched docs it has been so long since we saw him. He couldn't believe how far she has progressed since he saw her in March. He was really encouraged. He was hoping we could take her off phenobarb which is supposed to help with seizures. But after the blood work, her levels were not where they need to be to take her off. Even though she has never had any seizures, they want to be cautious, so we will check again in six months.

Jennifer had to take her to a lab to have blood work done. The first time they tried an IV and her veins are still shot from her hospital stay in February, they could find nothing. So after poking in her and trying for a while they quit. They would then have to prick her thumb and squeeze out enough blood to check phenobarb levels. But, they did not have the right equipment. Jennifer goes back with her a week later, and while the nurse pricks and squeezes her finger, Sara is smiling at him. When does she cry? Only when he tried to put a band-aid on her. Funny kid.

Ultrasound Technician - Sara had an ultrasound of her heart done as a yearly check up with heart doc. Jennifer hasn't seen the doc, but the technician said it looks perfect. No holes, nothing irregular. Maybe, just maybe we can cross the pediatric cardiologist off our doctor list. We'll find out in August. Why do the ultrasound in June and see the doc in August???? U got me

Sara is sitting up, crawling around (military style), turning over, and can sit up on her own from her tummy. It is amazing how much more able and strong she is. She is still eating great, sleeping great, and has one of the most laid back dispositions of a baby we have seen. She is easy going. But yet she is also immensely curious. If you are holding her and eating something she stares at your mouth with an intense expression like whatever we are doing and whatever is in our mouth is the most amazing thing she has ever seen.

One person (don't remember who) told us she was surprised how happy and laid back Sara was. Many babies in her situation are quite fussy and unhappy most of the time. We chalk it up to the Grace of God, because if she was fussy alot we would always be wondering and worried what's wrong - shunt? bowels? sick? In fact, Sara fought off her first official sickness a few weeks ago. Wasn't serious enough to take her to the doc, but there was snot and a cough for about 2-3 days. No fever. But because of her easy going disposition, we knew something was wrong. She was whiny, wanting to be held all the time, fussy. Exactly like our oldest was at that age, but this was not normal Sara. But she fought it off and was good to go.

Teeth and crawling are the biggest things she is working on. We think she might cut 4 teeth at once. All she has is her little two bottom middle teeth. But her top eye teeth are about the break the surface any day. Didn't know you could get eye teeth before middle teeth. Oh well, Sara doesn't seem to like the word normal. Won't be long before we post a pic or video of her crawling. Enjoy these.

Take a nap poolside on vacation - is there any better nap than this?

Happy Birthday to me!

Birthday cake in a pinch on vacation when you want to be careful what she eats because of allergies. So we have angel food cake, vanilla frosting, and sugary sprinkles. And you know, it wasn't half bad. Except for our 2 1/2 yr old nephew Alex - he said, "I don't like Sara's cake." Honesty - priceless.

Enjoying the beach before the oil arrives

Sara enjoying her birthday cake and song!

Happy Birthday Sara!

2010-05-25T05:40:00.009-05:00

Driving to the beach! Whose gonna pull over this cute kid?

One year old!

Man oh man, what a year! How amazing, terrifying, difficult, yet thrilling this last year has been. It's strange the emotions and memories that come flooding back to you from last year.

Last May 25th was Memorial Day, we had just returned from a week on the beach. This May 25th we are on vacation on the same beach, in the same condo. Instead of Jennifer being big and pregnant (I will get punched for inserting the word big), we have this little miracle child who brings such delight and joy into our lives each day. Well, I guess we have three of those, but you know what I mean.

Jennifer recently reminded me of a conversation she had with one of the hospital staff who was present during Sara's first few hours. She was telling Jennifer how everyone present was not hopeful Sara would even make it through the transport across town to the more intensive NICU. I remember that scene. The NICU doctor was going to allow me to come back and take a few pics before they transferred Sara. As I walked back everyone was standing around looking at the nurses and doctors trying to prepare her for transfer and the only word I could use to describe that scene was somber. Sad. Despair.

I put a collage of pics from each month just to remind you all of how far Sara has come. As I selected and loaded each one, I could hardly believe it. In so many ways it doesn't seem real. Yet, it has defined our lives for the last 12 months.

Three times we were told - things don't look good. Last June it was, she could die at any moment. One doctor told us in September, if you baptize your children, you might want to go ahead and get that done. In late January, when she had her second infected shunt, as the room filled with doctors and nurses poking and prodding a screaming baby, I stepped into the hall to text Jennifer who was home with our other two. I could only text, I couldn't emotionally talk about the frustration and aggravation of having to go through another lengthy hospital stay or the fear about how bad off she was again.

Yet, those darkest days have been overwhelmed by the glorious light of God's grace in healing and sustaining Sara. It reminds me of what Paul said in 2 Corinthians 4:17 "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison" The grace of God in healing Sara makes the dark days seem so light and momentary. Just as the reality of heaven will make our short time in this life seem so quick and light. Even when these days are dark and heavy, that's the hope we have because He has "shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ (2 Cor 4:6). So, no matter what we face - we can be afflicted in every way, but not crushed, persecuted, but not forsaken, struck down, but not destroyed - because of the life we have received in Christ (2 Cor 4:8-10).

We get reminders from time to time how different this could have turned out. One mom spoke at the March of Dimes walk about her baby who lived for about a month last fall. We have a different level of empathy for someone like that now. Praying that mom would know the strong presence of God who walks with us through the valley of the shadow of death.

I guess I sensed God's strong hand the most during the last year on those three occasions when it was bleakest. As I drove home from the hospital trying to live in the tension of a grieving, hurting father and a responsible, get things done father, I actually began to plan out funeral services for Sara. And as I imagined in my mind the scene I dreaded, God's presence was strong, comforting, and a treasure to my heart.

All that to say this - our faith in God that remained intact was not the product of the situation turning in our favor. God did not acquire our loyalty and love because Sara is healthy, happy and whole one year later. Our faith is the product of who God is. Good. Sovereign. Gracious. Merciful. Loving. Powerful. Wise. None of those qualities about God would have changed if Sara would have died or been severely handicapped.

God acquired our love and loyalty when He left heaven, came to earth, took on flesh, lived a perfect life, willingly died on the cross, and rose from the grave. He lived the life we couldn't, died the death we should've, and conquered our greatest enemies - sin, death, Satan. When that glorious reality took root in our hearts at different times in our past, we came alive spiritually, we went from being the enemy of God to being the child of God, and he turned two rebels into two worshippers.

By God's grace, Sara lived. And now thrives. And that only gives us one more reason and opportunity to sing His magnificent praises. We have tried to do that through this blog over the last year. As well as make prayer needs known. I hope that has come through. Thanks again for walking with us - your encouragements and prayers have been a gift to our family. Thanks for being so generous.

Now, back to vacation. A friend of ours, Ms. Patti, gave Sara her first birthday gift a few weeks ago. It was a sweet card and included money for milkshakes. We'll be taking her up on it on vacation at our favorite milkshake place. It's been a milkshake year for sure!

Praise the Lord, all nations!
Extol him, all peoples!
For great is his steadfast love toward us,
and the faithfulness of the Lord endures forever.
Praise the Lord!

Psalm 117

Happy Happy Mother's Day

2010-05-12T14:46:00.008-05:00

All continues to go well on our front. Sara is continuing to grow and develop with each passing week. Her recent check up with the neurosurgeon went well and he said when we do an CAT Scan in 3 months we should be very pleased with what we see.

Sara continues to eat like a champ. She is eating so much fruit and vegetables that she is actually taking less formula through the day. In fact she gets to a point where she DOES NOT want the bottle of formula, she wants in her chair with some food coming on a spoon. Very cool.

Sara also has quite a volume to her vocal abilities. When Jennifer is teaching the girls, I guess she wants in on the conversation and so she just jabbers LOUDLY! We can hardly hear ourselves. We are noticing some distinct Ma Ma's in her syllables and some Da Da's also, along with some others. There seems to be a much greater proportion of Ma Ma's than Da Da's, which I'm sure is some kind of anomaly and it has nothing to do with parental preference.

Sara is much stronger throughout her body. She just feels thicker and more steady when you are holding her. We are working on strengthening her trunk muscles so she can learn to roll over from her back to front. Her therapist thinks she is strong enough, she just doesn't want to do it. She can go from a sitting position to a crawling position, but hasn't quite figured out how to get up on her knees.

Jennifer has also developed into quite the resident poopologist. Because of Sara's struggles with bowel movements, she has received a few calls from mom's concerning their children and their struggles. She is able to offer some practical advice on what we have done and do to help things run more smoothly. I told her she could start a blog - The Scoop on Poop, or maybe write a book - Jennifer's Groovy Moves in the Bowel. (Ok, that's enough cheese for one post)

How can you pray for Sara? Continue to pray for her health. All 4 of us have battled through some viral infections (sore throat, coughs, fever) over the last 2-3 weeks, but God has protected Sara. Pray for her development, that she will continue to give God great glory for how she is overcoming the odds. And make sure you thank Him for how he has blessed us so much with this wonderful little girl (and the other two also!).

Bless the Lord, O my soul,
and all that is within me,
bless his holy name!
Bless the Lord, O my soul,
and forget not all his benefits Psalm 103:1-2

Oh to be that flexible again

Mother's day, one happy brood

This girls LOVES being outside, and the weather has been awesome!! She really loves our dog, giggles and squeals especially when Bella licks her feet.

What is this strange green prickly substance..

Baby Dedication Sunday, Sara and 9 other babies were dedicated that Sunday. So cool that she was one of them!

March of Dimes walk went great despite the nasty weather. We were the only church and our crew raised more money than the corporations - such giving and generous people! Thanks be to God for them. Our area has the highest percentage of premature births in the nation, 25%. (I think, if I'm wrong let me know)

Sara picking up and eating a cheerio

Sara giggling with mom

2010-04-19T15:37:00.006-05:00

I know I know I haven't been doing very well with updates. No excuses, just enjoying a busy life. Sara is doing so good it is hard to remember all the good things that are happening. She is eating fruits and vegetables left and right, weighs over 16 lbs, hasn't been sick, sleeps all night every night, and developmentally she is hitting her targets for her adjusted age. She will be 11 months old Sunday (can't believe it's almost been a year since this all began). Is she doing what a normal 11 month old would be doing? No, but for any preemie, much less one with her head issues, it takes 2-3 years to catch up. Her occupational therapist did an extensive evaluation recently and said she is on target for her adjusted ago for sure, but obviously needs time, therapy, prayer, and God's grace to catch up. She'll get there.

Sara is so so so much fun. She is totally interacting with us and others. As I mentioned below, Sara is going to church now, and as people come up and talk to her she is usually all smiles. And it is so cool having all 5 of us together again at church. Love it. I had been missing the best critic of my sermons, Jennifer, Ha! Sara is so laid back, yet very curious. She has a very easy going attitude but responds to sounds and sights with great interest. For instance, it can be very challenging to hold her and send a text message at the same time because she is diving for your phone. She loves to sit on the floor and play with toys. She loves to walk around the house with Jennifer and watch everything she is doing. She loves and squeals when you ask her if she wants to go take a bath. And when you put her in her car seat to go somewhere she is ecstatic - she loves to go. It's amazing and so much fun.

She usually sleeps about 11-12 hours solid at night and takes 2-3 30 min naps during the day. If they are gone somewhere or we are doing something exciting, she will just skip naps and be totally happy. Physically she sits up with no problem, can pick herself up from her back, is getting stronger at getting up from the side, loves to stand, rocks back and forth when on her hands and knees, and likes to lunge for toys when on her hands and knees. Her hair is coming in so fast, she even woke up this morning with bed head - very cute.

She has two teeth on the bottom. Sucks her thumb (no more mid-night paci runs). She only cries when she gets tired at night or hungry and is starting to make different sounds with her mouth. You can even see in the video below, you make a kissing sound at her and she will either suck her tongue back at you or suck her lips (which we haven't gotten on video yet). That's another thing you will see in the videos, she will not perform. She can be doing something funny, we get the camera and she quits. So it's really her fault the updates have been so sparse, she won't cooperate. Ha!

Continue to pray for her, but mostly praise God for all He has done in her life. We catch ourselves often just shaking our heads in disbelief at how far He has brought us over this last year. Who would have thought I would ever post an entry like this one. And for her to be so healthy, happy, developmentally progressing and sleeping all night? Our cup is surely running over. And for that, we give Him many thanks and all the glory!!

I will sing of the steadfast love of the Lord, forever;
with my mouth I will make known your faithfulness to all generations.
Psalm 89:1

Has God ever created anything sweeter than a sleeping baby?

Emma Grace so wants Sara's hair to be blonde, but it's getting darker the more it grows. Sorry EG, I guess this will have to do.

This is her typically response when we want to film her, cute, funny, but she won't do what we want her to do.

Now she gets it right, sucking her tongue in response to our kissing noises.

Ok, some might not like this, I gave her little pieces of ice the other day and her face was so funny, I had to capture it. Wait until I give her peanut butter, put tape on her paws, and have her chase a flashlight up the wall.

The purple bracelet I am wearing is for March of Dimes, check their website out if you don't know about them - they are the leading non-profit organization for pregnancy and the health of babies - especially premature and babies born with birth defects. There is a walk in Monroe, La May 1st, our church is sponsoring a team to walk in honor of Sara - very kind, thoughtful and meaningful to us. We can't wait!
if you want, you can suport the organization in honor of Sara and help out other babies and families.

Happy Easter

2010-04-05T14:52:00.004-05:00

It’s been a few weeks of “firsts” for Sara. Sara got her first tooth, she had her first trip out to a place other than the doctors office – the library, her first trip to the mall (what else could make a girls heart go pitter patter), her first trip to a restaurant, and finally and best of all we had our first trip to church yesterday.

Very very cool looking back and seeing all of your girls sitting together on Easter Sunday. And Sara did great, Jennifer said she would just sit and play with whatever toy she had while her dad preached and preached and preached and preached, and then kept doing good while he kept preaching.

Sara and her cousin Elisabeth - can you only imagine what they could be saying to each other?

But the angel said to the women, “Do not be afraid, for I know that you seek Jesus who was crucified. He is not here, for he has risen, as he said. Come, see the place where he lay. Then go quickly and tell his disciples that he has risen from the dead, and behold, he is going before you to Galilee; there you will see him. See, I have told you.”

Matthew 28:5-7

Sickness and more Good News

2010-03-21T16:24:00.003-05:00

Sara eating her toes

What? You gotta problem with that?

Thankfully the sickness has not been Sara. Her sisters have been fighting through sinus infections and viral infections this past week. Just a lot of high fever and coughing. Yuck, yuck, yuck. And even worse in the nighttime. But, neither Jennifer, Sara or I have picked it up. We have isolated them in their rooms (which Emma Grace especially hates) and washed hands and changed clothes so much I think Jennifer is considering moving into the laundry room.

Sara had a good check up this week with the pediatrician. We are free to begin introducing her into the rest of our world - grocery stores, libraries, shopping places, horse lessons, etc... The shout you hear Thursday morning was from me celebrating this fact. One of us will not need to always be home with Sara now. And Jennifer is just as happy to have her 3 girls out and about with her. I think she's crazy, but she's a mom. And while God gives moms these incredible powers to do amazing things, he also has made them a little nutty.

Funny story about moms and dads. This week Emma Grace has had high fever night and day and this causes her to throw up. So Jennifer has been sleeping on a mattress on her floor each night to make taking care of her easier. That leaves me on Sara duty. Well, Sara is still sleeping each night from around 10 to 7 in the morning. But usually we have to go in once or twice to plug and pat (paci). This is what I have been doing. So Friday night Emma Grace is doing better, Jennifer sleeps in our bed. We wake up Saturday morning and are drinking some coffee while all the girls are sleeping and I say - Man, Sara did great last night, didn't make a peep all night. To which Jennifer starts laughing, this kind of "men, what are we going to do with your whole gender type laugh". Apparently she woke up a few times and Jennifer had to get up and deal with her along with Abigail whose cough was getting worse that night. It seems as though with Jennifer back in the bed I kind of hit my auditory mute button. Ah, oh well. I slept great.

We have to wait a bit longer on places where she may be touched, but that is coming soon. She just won't be able to be held or have her hands touched. Jennifer saw a sign somewhere a few months ago that you put on a baby. It says - " I put my hands in my mouth, where have yours been?" Something like that. But the doc did say he lungs were strong enough now if she did get sick it wouldn't be an automatic trip to the hospital. Even with RSV, they would try to treat it at home first. That's encouraging. He also gave us the ok to go on vacation in a few months, so we can't wait to hit the beach!

Sara is eating about 6-7 fruits and tried her first veggie today - squash. She ate it well, no sign of not liking it. It helps to roll it in a little meal and fry it like that. She is eating about 2 tbls of food twice a day, along with her formula. She is almost 16 pounds. She is sitting up better and better, using her hands more and more and making more and more sounds. It's especially fun to see her laying on her back blowing spit bubbles at 2am.

Notice the drool. We really can feel a tooth about to come in, it won't be long.

Shout for joy to God, all the earth;
sing the glory of his name;
give to him glorious praise!
Say to God, “How awesome are your deeds!
So great is your power that your enemies come cringing to you.
All the earth worships you
and sings praises to you;
they sing praises to your name.”
Psalm 66:1-4

Living Life and Having Fun!!

2010-03-06T11:53:00.006-06:00

Check me out!

It has been a week and a half of God's grace in our home since coming home from the hospital. Things could not be going better. Sara is thriving and literally doing new things each day. We are continually amazed and have no one to thank more than our great gracious God!

Sara is starting to sit up more and more on her own. We still basically have to support her, but she not only is doing more on her own, but wants to. Just yesterday she doesn't just want to lay on the floor on in a bouncy seat, but be up and looking around. She is standing much stronger with us holding her hands. Her head is much steadier with little wobble. She is constantly interacting with all of us, smiling, laughing, looking, screaming, cooing, making new cute noises. She just discovered her feet yesterday and loves them. She can almost roll over from back to stomach. She does great with long stretches of tummy time. She is teething and drooling everywhere. She is eating prunes, plums, and apples now and loving it, wanting more. She is drinking 6-7oz of formula about 6 times a day and is over 15lbs now.

And best of all, are you ready for this........... she sleeps all night. Now you want to talk about the grace of God. His favor to us, not because we deserve it or have earned it, but His favor simply because He is gracious and it gives Him great glory. Certainly it is expressed ultimately through Christ and the cross dying for our sins, offering us the gift of salvation. But I would contend behind that we most see His grace in our family in Sara sleeping all night.

All sleeping sarcasm aside, this is just a weird thing for us. Neither of our girls ever did that, sometimes to this day. To put a child in her bed around 10 and not get her out till 7 is a genuine gift to us we are very thankful for. Every now and then we have to go pat her or reinsert her paci (plug and pat is what we call it), but for the most part we are in la la land all night. Now, if Jennifer and I would only go to bed instead of staying up enjoying spending some time together again around a bowl of popcorn and the idiot box we might actually get some rest.

The neurosurgeon is amazed at her progress. On the day of the surgery he told us he wanted to see us every two weeks. We find out later this is because he did not think she would be doing that well because of what he saw on the CT scans. Less than two weeks after the surgery he said that would not be necessary. He is amazed at her progress and how good she looks. IN fact, he held her and spun around to see if her eyes would track left to right, back and forth because there was nothing to focus on. And they did. She is seeing great, doing great. This is just very cool for us to enjoy. It's like our family has been recharged and reborn.

Her sisters are really getting a kick out of Sara, all the laughing and smiling. She is like a smile machine, look at her, say something and cha ching! SMILE. In fact, the other night Jennifer was bathing her and she was sitting her up to wash her back and she kind of slipped. So Jennifer instinctively said - whoop, kind of loud and high pitched. Sara just started giggling. Jennifer of course made the sound again - Sara busted out laughing again. All of this was while the rest of us were still at church Wednesday night and by the time we got home she was still in the tub, and the laugh fest was almost over. It is so neat to enjoy those little experiences of having a baby that we haven't really had the previous 8 months.

Thanks so much for your prayers, things are going great and we are soaking in all in. To the praise of our great God and Savior Jesus Christ.

"That you may tell the next generation that this is God, our God forever and ever. He will guide us forever."
Psalm 48:13b-14

Hey mommy, you one funny lady

Tummy time!

Sitting Up

Hanging out in Dad's hammock

Standing!

Weird week in Louisiana, Saints win Super Bowl and Snowstorm

Home Again!

2010-02-24T17:13:00.002-06:00

Waiting to get discharged

You have multiplied, O Lord my God,
your wondrous deeds and your thoughts toward us;
none can compare with you!
I will proclaim and tell of them,
yet they are more than can be told.

Psalm 40:5

Sara Unplugged

2010-02-23T16:19:00.002-06:00

She had her IV taken out today. Amazing how much nicer it is to hold, rock, and walk around the room with your daughter not plugged into something. Now if we could just put some clothes on her it would really feel normal. Looking 99.9% sure that we are going home Wednesday. She's doing great. In fact last night she slept from around 10 to 6:30 without waking up. Of course Jennifer got to enjoy that sleepfest, but we naturally ask ourselves - is she ok? what's wrong? Oh, this is what normal babies do when healthy.

Hospital Life

2010-02-19T11:16:00.012-06:00

Einstein is known for E=mc² to explain the theory of relativity, the relationship between mass, the speed of light, and energy. With this theory we can say things like a person traveling 20 years at the speed of light would not age as fast as someone living on earth for 20 years. Well, here is my theory of hospital relativity - TiH = .0001ToH. That is - Time in Hospital is equal to 1/1000th of the time out of Hospital. Time runs vveeerrryyyy slow as you sit and pass time inside a hospital room. About 1000 times slower than time outside of the hospital room. So the last 4 weeks we have spent in the hospital with Sara are equivalent to 4 minutes of real life outside of the hospital. (If that makes no sense, just shake it off and keep reading).

Jennifer and I decided several months ago that if Sara ended up in the hospital we would simply take turns staying with her. It is least disruptive to the most people. So every 24 hours we switch. Except on Sundays when I have to be at church to preach, etc.. So in a weeks time Jennifer spends not quite 4 days and I spend a little more than 3 total days with Sara. Thank goodness for the doc who has allowed us to do this. Thank goodness for the hospital room with a bathroom. Thank goodness for the fold out chair/bed, well kind of thank goodness. I won't know for sure to be thankful until I finish 6 months at the chiropractor.

It's been an adventure, that we are being told will be over Wednesday. That will be one full month. Jennifer and I have texted (almost 3,000 messages between us, I'm a nerd at heart I had to look), talked, hugged and kissed by the elevators as we have switched kids and are doing great. In an odd way we feel closer. There have been some reprieves. A few Fridays when Jenn's parents were here, we have spent part of the day together in Sara's room. The recent snow day in North Louisiana. I was at the hospital the night before and woke up to the winter wonderland and called Jennifer - "Honey, Sara has to be alone for a while because we have to play in the snow" So the four of us frolicked until Emma Grace couldn't walk and then back to hospital. And of course during three surgical procedures we got some time to hang out with the girls hanging out with their aunt and cousins.

Other than those short times together, our life has consisted of shuffling between two worlds, and it was such a strange contrast. You run like crazy with our 2 older girls - homeschooling, horse lessons, piano lessons, library, Homeschool Co-op (that would be a several dozen families who get together weekly to teach a variety of classes to all of our kids), church, grocery shopping, meals, bedtime and bath time. And then you enter hospital world - 24 hours, one room, one view, doctors, nurses, sleeping in spurts, and looking forward to meals like a teenager grounded to their room. The strange thing is at the end of your shift you couldn't wait to experience the other world.

One thing Jennifer and I discovered is that the cafeteria has a repeating menu for each meal each week. Since we are there at the same times each week, we get the same meals. So during her last shunt surgery we had a great conversation comparing meals and who got the better menu. Jennifer stated her case and started strong - fried chicken (Sunday lunch), cheeseburger (Sat supper), pork chop (Monday supper), and croissant sandwich (Wed supper). But I think I nudged her though through the strength of my breakfasts - Fried fish (Friday lunch), Rotisserie chicken (Thurs supper), chicken fried steak (Wed lunch), biscuit and sausage (Mon and Wed breakfast), and bacon and grits (Friday breakfast). Plus she got points deducted for mystery meatloaf for Sunday supper (can you say vending machine).

We've gotten to more and more interact with Sara. More and more hold her. Especially now after the shunt surgery, she doesn't have the externalized shunt and so we don't have tubing coming out of her stomach hooked to a large plastic bag. Glad that is gone! One of our favorite things to do is read her books. She is really beginning to look and pay attention. But I have to take issue with one of her books, a nursery rhyme book. Can anyone explain why this is a song we sing to our kids - Rock a bye baby - in the tree top - when the wind blows - the cradle will rock - when the bough breaks - the cradle will fall - down will come baby - cradle and all. It just struck me how odd that song is. Should we write a song about a baby dying in a car crash also. Maybe being bitten by animal. And this is supposed to be sung before bed. I don't get it.

One other thing we have noticed about Sara - she is about to get a tooth. She's been teething for a while and we can feel it close to the surface. As soon as we get home we will get to start fruits and vegetables. That should be fun.

All of this to say - God has been gracious to help us turn a situation we feared into a time of growth and memory making experiences. We have dreaded the day we might have to go back in the hospital. But, in a way that we can only attribute to God working in our hearts, we have not been bitter but grown better. We have laughed, prayed, and really enjoyed the time we had. Either in the hospital where we get to take care of Sara and have long times of reading while she slept, or with the Emma Grace and Abigail who have been awesome through all of this. I can say for sure we won't live with the same dread of hospital time that we have had. God really does not leave you nor forsake you, and He gives the grace you need at the time you need it to walk through anything. For that we are grateful.

Happy Sara

2010-02-16T09:34:00.006-06:00

Just great, they give me my dad's haircut again, gee whiz....

Sara is feeling much better this morning. She had some pain yesterday, but some stronger pain medicine helped with that. She mostly slept through the afternoon and night, waking about every 2 hours to eat a bit. Her bowels are already awake and working - praise God! We will continue to go slow with the food. Thankfully we will get to hold her today, which makes for one happy momma! She will receive 10 days of antibiotics and so we are thinking we will be home the middle of next week. Jennifer and I may have to wear name tags to recognize each other, ha! I'll tell of that later.

The surgery was successful. Sara's shunt was taken out of the right side of her brain and a new one was placed on the left side. Why the switch? The other side has had 2 infections, better safe than sorry in case there is something lingering. Also, there is a need to equalize the pressure on the left side. It was originally placed on the right side because that is where most of the damage was done from the intraventricular hemorrhage (brain bleed) and infarction (stroke) she experienced at birth and her first few weeks. The shunt has helped that side, even though there is visible damage (more on than in a sec). Her body is still producing excess cerebral spinal fluid (hydrocephalus) and the left side needs more attention now.

The doc is 90-92% confident this shunt will work and find that equilibrium. Too much pressure and it squeezes the brain. There are other options down the road that can be explored in case this shunt doesn't work. But they are more complicated and it is better to see if the easier solution will work first. Another problem with the right side was that due to the damage, her body was producing more proteins on that side which was part of the problem with the clogged shunt. If the shunt continues to get clogged there is an option to let it drain into the heart. Sounds dangerous, but it's somewhat common and can work.

From the CT scans, there is visible damage to the back of Sara's brain. There are gaps. Check this website out to learn more about what areas of the brain control what functions - Brain Map. From what I understand, it seems the damage is mainly in the occipital lobe. This explains why the doc is daily amazed at her vision and eyesight. Her ability to focus, track, respond to stimuli, respond to people - he continually marvels, as we do to. It seems with the damage seen on the CT scans, he is amazed at how well she is doing. And that is one important thing he has told us - you treat the child not the x-rays. From the x-rays there is no way Sara should be doing what she is doing.

What developmental difficulties will Sara have? No one knows. The doctors mention speech, reading, learning, math difficulties. To what degree? No one knows. But I do know God has given Sara two parents with educational degrees and teaching backgrounds. And I know Jennifer and I have never been more committed to doing all we can to help her, along with her therapists and others.

Abigail, our 8 yr old, asked Jennifer a few days ago - "Mom, why did God give Sara to us, why couldn't He have given us a baby without all of Sara's problems?" Jennifer replied what we believe - "God gave Sara to us because He knew we would be just the right parents and older sisters that she would need to meet all her needs. And Sara would be just the right daughter and younger sister that we need for our family" But know this, it has been a process of God through the Holy Spirit working in our hearts to get us to that point, we didn't just arrive there in a instant. Hopefully I will be able to write more about that one day.

Our Creator God has made us wonderfully and fearfully. He has given our brain an incredible ability to rewire and accommodate for damage, especially at an early age. He is gracious and merciful and works in ways we will never understand this side of Heaven. And He has a plan and purpose for Sara's life as He does for all our lives. God has decided several months ago that Sara will live. He is the author and giver of life - physically and spiritually (through Jesus Christ). And so now we get to go on this incredible journey as a family to see how God will work in Sara's life, our lives, and make His name known and make Himself look glorious! Thanks for going on the journey with us and praying for us.

One of Jennifer's favorite verses right now - Zechariah 2:5 "And I will be to her a wall of fire all around, declares the Lord, and I will be the glory in her midst."

2010-02-15T12:41:00.001-06:00

Sara is out of surgery and already awake. We will go slow with eating today and get to hold her on Tuesday. thanks for praying!

Surgery 10am Monday

2010-02-11T13:58:00.001-06:00

Sara will have her shunt replaced Monday morning. The doc is very optimistic about the success of this shunt due to the fact Sara is older and healthier. Pray all goes well and this shunt works for a long time. Thanks

Change in plans

2010-02-09T18:58:00.002-06:00

To say we aren't surprised would be quite the understatement. Culture is clear after 48, doc wants to do one more Wednesday and if it looks good, surgery will be Fri or Mon.

Infection still clear

2010-02-08T21:38:00.002-06:00

The 24 hour culture from Sunday is clear so far. We will know officially Tuesday. The doc mentioned to Jennifer that if this one is clear we will do the surgery Thursday. The surgery will be a total replacement, take out shunt system and replace on left side of head. I asked him today if that was still the plan, he said we will see? We will let you all know, thanks!

Good News!

2010-02-06T10:22:00.000-06:00

It's official, we have our first negative culture. After 48 hours there is no bacterial growth in Sara's spinal fluid. He will test again Sunday. And, she has gained some good weight, she is up to 13.22 lbs! Praise God from whom all blessings flow!!! I wonder if this hospital has a milkshake machine?

So far, infection is clear

2010-02-06T07:07:00.002-06:00

The 24 hour results on Thursday's culture is - no infection. We will know for sure today with the 48 hour results. Then he will obtain another culture on Sunday.

Infection Still Present

2010-02-04T16:07:00.003-06:00

The 48 hour results on the culture taken Tuesday are positive. Sara still has infection as of Tuesday. He took another sample today, we will get preliminary results after 24 hrs and final at 48. The culture for Tuesday was negative after 24 hours. It is not uncommon for that to happen, just takes a while for enough bacteria to grow for them to know for sure she is infected. The CT scan did look good today and the doc is happy with how she is progressing.

Her eating, sleeping, and pooping are also going very well. She has settled into a nice pattern and the last two nights have been much for restful for her and Thank You Lord, Jennifer and I. Thanks for all your prayers, encouragement and love!

2010-02-03T06:44:00.001-06:00

Sara is doing much better. Her spinal fluid looks clearer, fever is long gone, eating good, sleeping good, and yes - pooping good. Now we wait for neg cultures.

Still in the woods

2010-02-02T06:51:00.003-06:00

Continue to pray for Sara. Her fever is gone for the most part, but it did show up again later yesterday morning/early afternoon. She is having blood work done this morning to figure out what kind of infection we are dealing with.

And yes, it did all change as suddenly as my previous posts read. Jennifer was with her Saturday morning, neurosurgeon came by and was very happy with her progress. He said if the CT scan Monday looks good we will go home Wednesday. I came to switch with Jennifer around 2pm, and right before that Sara threw up. We have learned that throwing up, intense throwing up is a sign of a shunt problem. I rock her most of the afternoon, she doesn't want to eat, and throws up twice more. Through all of that we notice the fever. Other than her last shunt infection, she's never had fever.

The doc orders for the temp in the room to go down and that night was my first night sleeping in a refrigerator. Later that evening both docs show up (neurosurgeon and pediatrician) and want to tap her. But he still has this expression - this baby was fine earlier today, this makes no sense. They tap her and he tells me in short order, the shunt is clogged we will replace it Sunday morning at 10. Both docs look at the cerebral spinal fluid (CSF) and it is clear, looks good. Cloudiness or coloration are signs of infection or other problems. They still don't think infection. The cultures on the CSF tell otherwise and that is when plans changed Sunday morning.

Now the concern is that her CSF is yellowish. Again, blood work this morning and cultures should tell us what we are dealing with. You can also pray for her tummy. She continues to have trouble pooping. She continues to be irritable and fussy. She is not sleeping soundly. This could partly be because she has to stay on her back and she is a tummy sleeper. She would sleep great if she could hold one of our fingers all night. Unfortunately we can't stand all night. It's really funny, I can see the difference in her heart rate when she is holding my finger and when she isn't. She will relax and her heart rate will get down between 110-120 when she is holding my finger. I slip it away and as soon as she realizes it about 10 seconds later she is at 130-140.

We continue to believe that God is going to get Sara through this, that's walking by our faith, the eyes of our heart. But our physical eyes still struggle to see that clearly when she continues to have so many setbacks. So pray that the eyes of our hearts would be strong to see clearly and trust strongly in our Father in Heaven that promises to never leave us nor forsake us. Pray we would sense His strength and the presence of Jesus Emmanuel (God with us) through every minute of every day and night. We'll keep everyone posted so you will know how to pray. Thanks for all your encouraging words.

2010-01-31T09:04:00.001-06:00

Change in plans, cultures came back positive for infected shunt. Doc will externalize shunt wait until all clears and put in a new one. 4-6 weeks in hospital.

2010-01-30T20:03:00.001-06:00

The surgery will be tomm morning at 10am.

2010-01-30T20:02:00.001-06:00

Sara's shunt tubing is clogged again, and instead of continually working on this one and exposing it to infection, she will get a whole new system on other side

2010-01-30T16:50:00.001-06:00

Please pray for sara, she had been doing well, supposed to go home Wed. she has come down with a fever this afternoon and wont eat. waiting on doctor.

2010-01-29T13:01:00.001-06:00

Sara is really doing well. Eating and sleeping good, we got the poo poo train rollin again, and now she is laying in the bed talking, laughing, and squealing!

2010-01-28T14:44:00.001-06:00

After ct scan, we will see about going home. It is not definite that she has to be on antibiotics for 7-10 days. thx for praying!!

2010-01-28T14:42:00.001-06:00

Sara is doing much better, docs are pleased. Hasnt slept much today, but we just got the ok to let her sleep on tummy and she is out! CT Scan on Monday.

The Baby that Suprises

2010-01-27T22:59:00.003-06:00

We took Sara into the doctor Tuesday afternoon concerned that her reflux was not improving enough. I mentioned last week that we had several good nights and days in a row, and we did. We really thought we were turning the corner. Sara was sleeping well, not irritable at all, and smiling like there was no tomorrow. But over the course of the weekend, she progressively got worse. She constantly had to be held, throwing up once or twice a day. Wouldn't settle down and sleep until 3 in the morning, very irritable, almost worse than it was when we first got the diagnosis of reflux. So we took her in Tuesday afternoon.

Her head had grown over an inch in 3 weeks. That was the biggest concern for our doctor that sent us to the hospital. The reflux should have been improved, something must be wrong with the shunt. So, Jennifer takes Sara over to be admitted and have a CT scan done and x-rays. I make my way to the hospital and on the way to Sara's room I run into our Neurosurgeon who is surprised Sara was there. He came immediately to look at her and assured us she was ok, nothing serious. After viewing the results of the CT scan, he decided to go ahead and tap her shunt that night to check for infection and see if it was working.

He was pleased that their appeared to be no infection. And as of now, no infection is showing in the cultures. But he also noticed the bottom half of the shunt system (distillation (I think) - where the Cerebral Spinal Fluid is dispelled into the abdomen) was not functioning strongly. The top half where the CSF is absorbed from the brain was working great. His plan was to first make sure there was no infection - that was worse case which would involve the removal of the shunt system and a new one put in. That was our little 42 day trip to the hospital back in Sept-Oct. If there was no infection he wanted to check the drainage portion of the shunt system to make sure it wasn't clogged.

I stayed with Sara the first night and we have a pretty good night. She eats the last time at 6am. Then around 8:30 the nurse comes in, asks when she ate last, and then tells me not to feed her again. I ask - is something planned? Well she doesn't know, just don't feed her. I quickly find out that surgery had a 2pm scheduled surgery for shunt revision. We see our doctor at 2 who said we had been pushed back because of an emergency. He suspected the end of the shunt tubing had become clogged from protein deposits that occur naturally in your abdomen. He planned to removed them with a small incision and irrigation and motion. If that did not work, he would pull out all the tubing and put in new tubing from her neck to the abdomen. Thankfully, the first, least invasive procedure worked. The plan now is to watch her for a time (days?? weeks??) to make sure all is working.

Sara's second problem is gastrointestinal. Apparently all the Miralax we had been told to give her may have been making matters worse. We don't know what the real issue is, but the doctors think it may be neurologically related. So we will be off to see a gastro specialist in Shreveport soon. The neurosurgeon did see a spot on the CT scan that concerned him. He said it may be damage from the stroke she suffered at birth, that is now beginning to show up. This could be the cause of the gastro problems. We actually remember the neonatal pediatrician telling us that gastro problems could be neurological. That's all we know, thankfully we pray to an awesome God who already knows. We'll keep you posted so you can know how to pray.

Me and Jennifer I suppose are getting more battle hardened. This has not been as despairing as our last trip to the hospital. Certainly also because it is not as serious as an infected shunt. It's funny how quickly you go back into crazy hospital life mode, I guess it's like riding a bike. It sure is different now when they work on Sara and she just looks up at you with those bright blue eyes and long eyelashes wet with tears seemingly saying - Who are these people and what are they doing to me?

How can you pray for us? Patience, wisdom, peace, strength, opportunities to bear witness to the reality of Jesus Christ as our rock and refuge, our ever present help in a time of need. Pray we would be able to faithfully live out the truths about God that we know are true. Always pray for Abigail and Emma Grace, God has given them so much grace to understand at such young ages.

We are even more full of hope than ever before about Sara's life and future. As the neurosurgeon spelled out some negative prognosis' he said - "but remember, this is the baby that surprises us." From the time she was tiny and they didn't think she would make it through the day until now, she is the baby that surprises us. Thanks for caring, loving, and praying!

2010-01-27T17:56:00.000-06:00

Surgery was successful with the least invasive procedure, thx for praying, now we can praise God once again for showering us with love, grace, and mercy!

2010-01-27T16:36:00.001-06:00

Sara is finally headed to surgery. I'll fill in the details tonight.

2010-01-27T09:44:00.001-06:00

Shunt revision surgery scheduled for 2pm. Havent seen doc, that is all I know. Please pray

Shunt Problems

2010-01-26T16:18:00.001-06:00

Sara is being admitted to the hospital. Something is wrong with her shunt. She will have CT scan and Shunt series xray done and then we will go from there. Thanks for praying!

New pics

2010-01-20T07:04:00.007-06:00

By the way, thanks for the prayers, we have had 2 good nights of sleep the last two nights!!

Rocking Chair and Infomercials

2010-01-18T11:07:00.003-06:00

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ
ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ
ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

I asked Jennifer to write the first paragraph. but that's all she's got. Rocking Sara into the night watching infomercials has a negative effect on wakefulness.

There are so many things we thank God for concerning Sara. When awake, she is very happy, can't hardly quit smiling. She is improving all the physical skills she needs to be improving. She is responding to her therapy and her two fantastic therapists who come once a day each week. Which is nice because we know at least two mornings each week the house will be straight. Her reflux is improving, her bowels are working well, and she is growing. Sara got her latest round of immunizations. Her sisters went with her and did not enjoy that viewing experience. She goes next week for an eye exam. Pics will be posted tonight. Most of all, God has protected her from sickness, and we haven't been in a hospital for 3 months!!. Many, many thanks for all of that.

But my oh my, when is she going to start giving us some consistent sleep. I know, I know, the travails of a new born. It's the nature of the beast. But if I don't tell you about it, then you can't pray with us. And in light of the other serious issues Sara has faced and by God's grace overcome, this seems minor.

Of course we try and figure out what is causing the wakefulness. It's not always fussiness, sometimes she is just wide awake and smiling from 2-3. Is it reflux? Constipation? Colic? Growth Spurt? Teething? Shunt related? Loneliness? Cold Temps? Phase of the moon? Divine sense of humor? Testing of our marriage through sleep deprivation? Demonic possession? It's got to be something.

In perspective, we have much the thank God for in how He is helping Sara. It's just sometimes we are too tired to see that perspective. But hey, at least if anyone needs any recommendations on magic grills, bullet choppers, workout systems, or vacuum cleaner hair cutting systems - ask Jennifer, she would be glad to recommend. If only I could wake her up....

Happy New Year!!

2010-01-05T11:39:00.006-06:00

What a great and difficult Christmas season we had. Lot’s of good times and memories made with family and friends, too much good food eaten, too many pounds put on, but it was one of my favorite Christmas'. On the difficult side, over the last 2-3 weeks we have learned Sara is allergic to rice cereal and has reflux. Twice Jennifer has gotten ready with both of us convinced we were headed back to the hospital with Sara. Jennifer remembers one of the NICU nurses telling us – with Sara it is always going to be something. Boy was that an understated prophecy.

I posted the video below of Sara eating rice cereal. You know rice cereal, the substance so bland, so safe, so easy that any child can learn to eat with it with no problems. A substance so safe we fed it to her 4 straight days. I commented on the video that it was clogging her up – ok understatement of the year. Only for the next 3 weeks would it cause poop problems. By the end of the first week of cereal (this would be the weekend before Christmas), she was incredibly fussy, straining to pass a stool, and was not eating as much. It sounds like it all happened at once, but it was a gradual process that only happened at certain times of the day. By that Friday night (Dec 18) we were convinced she was getting distended and off to the hospital we go.

We woke up that Saturday morning and called our pediatrician who is kind enough to let us have his cell number. He said give her a suppository and call him back in an hour. If it doesn’t help, bring her to the ER for an x-ray. So I’m rocking her and pleading with God to be merciful to Sara, our other girls and our family one week before Christmas while Jennifer gets ready. Jennifer comes in the room to get her clothes and car seat ready, I stand up with her out of the rocking chair and all of a sudden she poops everywhere. I’ve never been so happy to smell it or clean it as I was then.

The doc said just watch her, increase the amount of Miralax we were giving her (all natural stool softener that is awesome, and apparently they can’t get too much), and see what she does. So through the rest of the day she was better. That evening she is hurting again, in pain, straining, fussy, not eating. Here we go. Jennifer is at the church with Abigail and Emma Grace rehearsing for the children’s Christmas play and having a Christmas party while I’m walking around the house with Sara praying about should we take her to ER or not. We both decided that when Jennifer comes home, she’ll take her and I’ll get the girls in bed. While I’m walking around a thought pops in my head – give her a warm bath. I’m sure I’ve heard this advice before, but I’ll chalk the timing up to God. So, I give her a bath, she relaxes and voila! We have more of the golden goop floating in the tub.

This is basically how we lived for the next week and a half through Christmas. Increase Miralax, if it gets bad give her a bath, talk to one of the nurses, and maybe give her a suppository (which we only had to do once more). Slowly she continued to improve and right around New Year’s Eve – New Year’s Day we feel like that was resolved. Talking to the doc and nurse, we all feel it was an allergy to the rice cereal. So, the game plan is to skip cereals and begins fruits and veggies later on moving very, very, very, did I mention very? Very slowly.

Enter situation #2. Just as the poop issue was resolving, she threw up on Tuesday night (29th). Jennifer had just fed her, laid her down to change her and a fountain of vomit came forth from Sara. Now we’re thinking distention or is it the shunt (both things happened the last time she vomited). She’s fussy, but she sleeps good. We head home the next day from the outlaws, err I mean in-laws, and she throws up on way home. Jennifer calls doc, they give advice to watch her. We do and over the next few days she throws up every now and then.

We think the throw up is kind of phlemy or snotty. All of us have been around and had a little bit of that over the last month or so. Not colds, just snotty (in this part of the country they call it The Crud – don’t ask why, I don’t know). But it hasn’t affected Sara. God has helped us to be very diligent with Purrell, changing clothes and limiting who deals with Sara to basically me and Jennifer. We don’t really even let our girls touch her much right now. But by New Years day we think she is getting congested and snotty in her throat. Coughing a bit, though dry. We set up the cool mist humidifier in her room., get out the Vicks and start praying. She is sleeping some in her bed, but at night she is having to be held by one of us and rocked part of the night. But then every few days she has a good night. I think that is God’s mercy extended to us.

By this past Sunday night it seems to us like she is trying to cough but can’t. Maybe her lungs aren’t strong enough. We both pray but are convinced we are hospital bound. Jennifer actually takes Sara to the doctor yesterday. My parents are on hold in case they need to come and stay with our girls for me to go to hospital. I sit and wait for Jennifer to call. Tick-tock, tick-tock, tick-tock. Almost an hour passes before she calls on the way home- it’s reflux. Never thought I would be excited about reflux. No hospital, just Prevacid. That’s ok, we’ve been through that with Abigail and a little bit with Emma Grace. We know reflux, we can deal with reflux. And of course, that explains a lot of her behavior, especially over the last week.

So we are still home, Sara had a much better night last night, settled down around 12:30. With the Prevacid we should see some major improvement very soon. The doc was a little concerned about some things he is seeing with her shunt, but he said nothing to worry about now, just watch it and notice if what he sees changes. It could just be her body getting used to it and it will always be a little puffy in a few spots. Pray along those lines. She isn’t showing any symptoms of shunt problems.

We thank God that he gave us wisdom and patience over the last few weeks. We thank Him that we made it through Christmas with our families and no sickness. We thank Him that you all continue to love and pray for Sara.

Over the last few days when Sara has felt better she has been a smiling machine. You see that in a few pics Uncle Buck took of her on New Year’s Day at my parent’s house. Well, I come in Sunday night from church and Jennifer has her genuinely laughing. When she feels better and does it again we’ll video it, but my sweet considerate and caring wife was gracious enough to remind me that she got her first smile and her first laugh. Yeah, whatever, who cares.

One funny story and then I got to go. Two days before Christmas we still have to get stockings and small gifts the girls give each other and Jennifer and I. Because we are all buying for each other, we have to have some way of keeping it a secret. Normally, we all go to one store and use coats to cover up things in buggy, etc. But we can’t take Sara to a store. So we could take turns taking 3-4 trips from home to a store. With Christmas traffic – not gonna happen. So we decide to all go and Jennifer and I would take turns going into store with girls, by ourselves, and Sara stays in car. Brilliant! Great plan. Save time, save gas, the efficiency nerd in me is loving it.

So Jennifer is in the store by herself, Sara is getting a little fussy. I’m thinking she’s about to eat, so I look down into the diaper bag for her bottle and formula to get it ready. I’m looking, looking, looking, not finding and then it hits me. We forgot it. I fixed the bottles and had them on kitchen counter. I assumed Jennifer would grab them. She assumed because I fixed them I would grab them. And in all the hustle and bustle we left them. I’ll let you all sort out the blame.

So I text Jenny – did you happen to pack her formula? She later tells me she almost dropped her phone in the aisle in Target when she read that. So, off to the baby aisle, can of premixed formula, one bottle, and one can opener coming up. If there weren’t two other children sitting in our van I would have sworn we’ve never been parents before. How do you leave home and forget food for your baby? I don’t know, but we did it. Breastfeeding was so much easier – food is always packed and prepared and dad gets more sleep at night. Oh well. We got it, Sara ate and our little happy crazy adventure continues.

Is this the life or what?

Playing in snow flurries yesterday. In La you have to celebrate every little bit of snow

Our dog Bella. When we wants to come in she will just sit and stare through the door like this. So your sitting there and look over and see this dog staring at you. Sometimes she will do this through the kitchen window while you are at the sink. Kind of cute and kind of creepy, ha!

Merry Christmas

2009-12-25T21:50:00.005-06:00

Sara is doing great. We are in South La for almost a week with Jennifer's family for Christmas. After the new year I'll give another update, thanks for your prayers.

We hope everyone is having a fantastic Christmas and remembers to worship our Lord for His incredible gift to us - His Son to die for our sins and rise from the dead. And of course we hope you have received this gift of life and forgiveness. If you want to know more about that, click here.

Videos of Sara

2009-12-18T07:25:00.005-06:00

Eating rice cereal for the first time. This has led to some clogification this week followed by alot of fussification and no sleepification, but it is getting better.

We are showing her these black and white pictures to help her focus and follow better. She is improving each week. Apparently she enjoyed this, although it was getting close to - leave me alone!

Amazing Improvement!!

2009-12-12T14:05:00.008-06:00

Christmas card pics - thanks Uncle Buck

Sara continues to amaze us at how God is working in her little life. Even more so, she has amazed one of her therapist. I mentioned recently some things to pray about - namely Sara responding to therapy. On Dec 1st, the therapist gave us the exercises to do to work with Sara, mainly on moving her head to one side, her left. She favored turning to the right. If this would have continued it could have become much more serious. So we did the exercises.

Well, Jennifer and I thought we could see improvement, but when the therapist came one week later (this past Tuesday) she said - This is not the same baby I saw last week. I wasn't there, but Jennifer said she remarked over and over - this is amazing, I can't believe she improved this much in one week. How cool!! In fact, we are no longer doing those exercises and have moved on to some that help her focus and follow objects, reach and grab, and loosen up her midsection (maybe I should get Sara to do what I do to loosen my midsection - fudge and eggnog!).

The new formula did not work out, she only had 3 bottles and reacted to it immediately - very fussy, which is unusual. We immediately switched back and now we are back to normal. Sara did get to try rice cereal for the first time yesterday. The video below shows that experience. But today, she loved it! She ate the whole portion and seemed to like it alot, lots of squeals.

Sara continues to be healthy and doing well. Enjoy the pics and video of her. More so, enjoy our great Savior and King whose name is Jesus!

Ok, they've put me in this new contraption, I don't know what it is, but I know dad couldn't find the real cushiony seat for it so they stuck some ole bath towel down instead. I don't know what they have planned, but I don't think I like it.

What's this?? What is she holding? and what is she doing with it?!?!? she trying to stick it in my mouth, wait there is some kind of substance laying in the concave bowl on this object. It appears she wants to put that substance in my mouth, should I??

What is this?!?!? No one asked me about this, eh, uh, ... I don't know what it is. It's a cross between uh, well, I don't know I've never had anything else. What is the universal baby sign for disgusting, umm, oh yeah I spit it out!

Oh well, maybe it wasn't so bad. Maybe if I smile real cute they won't do it again.

Emma Grace at her bday tea party

I tried all day to upload some videos, they're coming, just not today.

Good Doctor Visits

2009-12-03T10:31:00.002-06:00

Sara had a checkup this past Monday with her pediatrician, and he was tickled with how well she was doing. She was 12 1/2 lbs. She is getting a change in her formula to a kind that will sustain her a little bit longer. Her stomach is digesting everything great and is getting hungrier sooner. So the predigestive formula is not filling her up. If the new formula sits well with her, then we will also begin to introduce rice cereal. I actually have to get the high chair out of the attic and get it cleaned up!

Sara is also full time into therapy. There are several exercises the therapist showed us to do with her. Sara favors turning her head to one side over the other. If this were to persist it could cause some real problems. So we do some exercises several times a day to turn her head the other way to get the stiffness out. The OT (occupational therapist) said it is like a crick in the neck. She doesn't want to turn it because it is stuff and hurts. So we have to loosen it up.

We also are going some exercises in helping her focus and track objects. We actually have an appointment with an eye doc in January to make sure everything is working right. Our doc thinks it is, just precautionary. It's hard to say if these issues are caused just by prematurity or the damage from the brain bleeds and infarction.

Sara is still sleeping great, smiling alot, and we are getting more and more attached to her each day. Our other girls are especially growing more and more fond of her.

You can pray for the therapy to accomplish what it needs to accomplish in her little body. Also pray we would be diligent with her exercises. Pray for her continued health through the winter. Thanks for caring and praying!!

6 Months Old and lots to be Thankful for!

2009-11-25T23:19:00.004-06:00

Sara discovered the Christmas tree lights after she at last night and couldn't look away. The pic is a bit dark, but you get the idea

6 Months ago Sara surprised us, 6 months later she still does. Who would have thought in June we would be decorating a Christmas tree with Sara the day before thanksgiving. But is anything too hard for the Lord?

She is now 12.2 lbs and 24 in long, at her last dr appt yesterday. She saw the pediatric cardiologist who was watching to make sure all the valves were closes and everything is working right. He is confident she is good to go, so we won't see him for 6 months!

We will be heading to see family tomm, Sara's first trip out of the house not to see a doc. We had a bit of a scare with Emma Grace who came down with a little bug, but she is good to go and we are all 5 good to go.

The newest things Sara is doing include rolling over from front to back (still can't catch her on camera), a new cooing sound, and sucking on 4 fingers to go to sleep.

Hope everyone has a great Thanksgiving, we much to praise Him and thank Him for!

Psalm 98:1 Oh sing to the Lord a new song, for he has done marvelous things!

Amazed

More Christmas tree amazement

Helping decorate

New Pics and New Tricks!

2009-11-18T14:53:00.004-06:00

By tricks I mean Sara can roll over from front to back. Both times it has happened yesterday and today have been when she is waking up from her nap and wasn't the happiest little critter in the world to take a picture of. But we'll give her some tummy time when she is happy and get it on film (but keep that quiet, if she finds out our plan, she'll never do it).

Hey Dad, I think I have more hair than you!

(Jennifer was holding her at an angle and she is holding her head up all by herself. Very impressive - see video below)

Again with the disappearing arm trick. She loves it so much she laughs!

So I bend down to nuzzle her with my nose to get her to laugh and jump back up to get the pic and their blurry! Don't have a unblurrification button on my camera software, but you can still see that big smile!

Alright Dad, what are you up to? You gonna put you big nose on me again to make me laugh.

Aauugghh, here it comes, run for my life. Wait, all I can do it lay here. Ok, poop on him!

All dressed up with my cool fake shoes and no where to go.

Hey mom, please make him stop, please get me outta here

Biking with my other two girls on a beautiful fall Saturday, at least before the dogs attack.

Hanging out and about to be sleeping in my stroller.

I love my sister!

This video is just showing how well she is holding her head up. Jenn is sitting at an incline, so she is doing all this work herself.

Good Week, Fussy Weekend

2009-11-16T10:24:00.002-06:00

Sara had a great week last week. She slept good, ate good, smiled good, and she is almost laughing. In fact the other night, I had her laughing a few times. So we turn on the camera and???? Nothing. Kids!! It's like they know your trying to capture that moment and they shut it down.

She was kind of fussy and wanting to be held alot this weekend, of course you always start thinking something is wrong with the shunt. But we think it was more along the lines of constipation - we know how to fix that. She was back to her pleasant smiling self this morning.

We started therapy this past week. Twice a week, Mondays and Thursdays at 8am an occupational therapist and a special instructor will be coming in to work with Sara. Help her hit those milestones. You might ask - why so early. Well, they come to our house first before visiting others houses that may have sickness. Also, we are early risers and like to get that done before our day really begins, so it really works great for us. And Sara is usually up and happy by that time.

Have a great week - thanks again for praying and caring. I'll post some new pics later today or tomm.

Sara being Excited

2009-11-09T21:00:00.002-06:00

Everything going Great!

2009-11-09T06:14:00.006-06:00

We have been doing well as a family, Sara has been doing great. We made it through our first sickness a couple weekends ago, Sara had some minor symptoms, but no fever and no trips to the hospital. She has had 3 doctor's visits that have all been great. Her pediatrician, neurosurgeon, and neurologist are all very pleased. In fact, we don't go back to the neuro-docs until March!! Now, that is nice!

We are really feeling like we are settling into a nice normal routine. I mentioned before the hardest thing about life with Sara is that she cannot get out into big crowds, i.e. church, stores, etc.. As a pastor, that makes life a bit difficult. Our church family would love to see her, we would love to bring her, but we have to weigh all of that against taking risks and her health. So we have this crazy routine of me being home while Jennifer teaches her pre-school Sunday School class, then she comes home and I go preach in our worship service. And then we repeat it in the evening, while she is helping the children's group at 5, I am with Sara, and then we switch at 6. It works. Before we know it, it will be past flu and RSV season and we can bring her wherever we want.

The good news is we have been given permission to travel at the holidays, so as long as our extended families are not sickly we can go see them. We still will have limited visitation, but that won't be a problem. We are going through bottles of Purrell hand wash like fried chicken at a pastor's conference. Thankfully they make a kind with aloe that helps your hands not turn to sandpaper from the alcohol.

Sara is up to 11.5 pounds. She is sleeping through most nights, every now and then waking up to eat once, or we have to get up and give her a pacifier. Jennifer and I alternate nights on duty, one of the silver linings to not being able to breastfeed Sara - Jennifer gets some nights off. Of course, that would be a silver lining from her perspective, I never knew how good I had it! She is really funny when it isn't her night- she really loves to sleep and not have to get up.

Some of the things we have been up to....

The girls helping me celebrate my bday. Homemade cards and a new ipod from my bride - awesome gifts and great day!

Dressing up for our church's fall festival - Tinker Bell and a Bridesmaid

Carving pumpkins

Carved pumpkins

Field trip to an awesome Pumpkin patch farm in Start, La

Licensed to Kill - don't mess with this girl!

Notice her hand in mouth - the neuro-docs were very excited about this, good brain development thing! Who knew??, we're just praying she finds that thumb and we can quit the 2am PIM's (pacifier insertion missions).

Hanging out on Emma Grace's bed

Hanging out with Maw Maw - my big sister dressed me up!

Abigail is so much help!

Have a great week, thanks for checking in, praying, and caring. God has been so gracious and kind to us, we have so enjoyed being all home together. Praying you know His grace through Jesus in your lives, homes, and families also!

Good Checkup and Answered Prayers

2009-10-29T16:01:00.002-05:00

Sara had a good check up with her pediatrician today. She is now 10lbs and 8 oz. We don't have to worry about a eating schedule now, she can just eat when she wants, so no more waking her up out of deep sleep naps to feed her. She actually went 8 hours last night without eating. She wasn't sleeping the entire time, it started around 8, but we can see some serious sleep around the corner.

The Lord graciously answered our prayers about the sickness and poop. Jennifer and the other 2 girls were sick with a contagious viral infection - but by the hand of God and lots of purrell Sara only had a runny nose for about a day. No fever or sickness. And the poop issue resolved itself - back to normal. One doc visit next week and then none until after Thanksgiving.

Good News

2009-10-26T13:11:00.002-05:00

Her poop is ok - nothing showed up in the culture. And it has returned to normal as far at looks (it has always smelled like poop). Why did it look so funny? Don't know, maybe we will find out at her appt. this Thursday.

Also, while Jennifer and Abigail caught Emma Grace's viral infection, Sara has not. Nor me. They had a pretty miserable snotty, coughy, tired, feverish, lay around the house and moan weekend while I was out of town, but they made it through by the grace and strength of God and many many prayers. Thanks!

Geauxxxx Tigers!

2009-10-22T19:27:00.005-05:00

A good week with Sara. She is settling in nicely. Sleep rather well the last few nights, only waking up once to eat. Yesss! Awake and happy during the day and enjoying life at home.

Couple of prayer requests - there is some kind of issue with her poop. It started a few days ago and our doctor asked for a sample to run a culture on today. So I had to make an unusual deliver of two dirty diapers to the doctor (or as Emma Grace likes to say from Bug's Life - a poo poo platter). We will know Monday. There is a possibility of hospital time, but with her acting normal in every way, we don't think so. I guess a preemie with a shunt there is always going to be the possibility of hospital time. Just pray.

Also Emma Grace has a viral infection (not the flu) we are doing everything we can to keep her and Sara and really the rest of us separated. We have almost begun wearing bottles of Purrell around. Pray for her to get well and no one else to get sick. As of late Thursday night - so far so good.

Also pray for Jennifer's family, her grandmother passed away this week. Unfortunately with Emma Grace's sickness, Sara's precautions, and me preaching the funeral sermon she won't be able to travel south to go. Just pray for her and her family and especially her grandpa - J.O. Thanks

Hey check out my sisters - aren't they great!

Alright, whose the wise guy? What are those bunny ears? Are you kidding, you better watch it sister, I'll drool on you!

This is what we like to do when it is naptime, turn on a bright light, let her sisters say loud things and roll the camera! Ahh, she's cute anyway.

Our First Week Back Home

2009-10-19T06:39:00.005-05:00

It's been a very good first week back home. Sara has done great. As I told our church, she hasn't learned all the rules of the house yet.... i.e. we sleep at night - she likes to be WILD n CRAZY some night from around 10-2!! But it's not every night and it's not always too wild and crazy. Also, when we all get our plates fixed and sit down to eat a hot n delicious meal - that is not your cue to want to be held. Again, it doesn't happen often. And third, when dad is feeding you less than an hour before church starts that is not the time to squirt a poop out the back of your diaper onto his pants. Thankfully in the providence of God I had brown pants on of which I have two pair. Other than those minor infractions, it's been a good week, she's been great, very easy going, the girls have loved her, and we look forward to many many more weeks home.

The most difficult thing for us isn't colic, but the precautions we have to take. Not being able to get her out in crowds etc.. It's a new normal we have to get used to -whenever Jennifer has to take the girls somewhere - grocery shopping, shopping, homeschool Co-op, horse lessons, etc.. I have to be home - or I have to take them. Just those little logistical mundane things that make your life go round. But we are figuring it out, adjusting expectations, God is helping us work together.

Have a great week!!

Sara and her bath. She loves it and usually smiles and squeals, but of course when the camera is rolling they don't. We'll get it one day.

Bundled up for a few minutes in the nice fall weather Saturday.

Got some pastor appreciation love last night for our church family. I should say, pastor n family appreciation love. It was so kind and thoughtful. I so appreciate our faith family (Paron Baptist), they have been incredible over the last four months, helping, willing to help, being understanding of my time needed for my family, etc.. I love em' all. If you have a pastor (and I hope you do) let them know you appreciate them - it means alot.

Jennifer was holding Sara the other night and got this great video of her. I think she likes her mama.

Home

2009-10-12T14:56:00.001-05:00

No Words Necessary

Monday Plans and Saturday Scare

2009-10-11T20:53:00.004-05:00

Sara is still on track to come home tomm. It will be late afternoon. She is doing great and there shouldn't be any setbacks. But Saturday for about 2 hours, well...

I was with Abigail and Emma Grace at their cousin's, Gabriella, birthday party. Jennifer is at the hospital, we're keeping in touch by text, and I get a text that the doc was about to come, and then he was going to take the femoral line out of her leg. This is a type of IV line that goes into her femoral artery that was put in before the surgery. It is a heavy duty line that is actually sutured or sewn into her leg to hold it in place. The line runs up her artery almost to her heart.

Well, they were concerned about the line, possible infection etc.. so the doc was coming to take it out. Great, give her a regular IV till Monday for the rest of her antibiotics. Well, they had trouble finding a vein for the IV, got tired of sticking her and decided against it since she was about to go home and had enough antibiotics.

Then I get a text that they were calling the doc back, Sara's heart was doing something funny. Um, not good, that's not good. Look at the kids playing at the birthday party - how cute. Then words begin to be tossed around - possible blood clot from the femoral line. Oh, we're opening presents. The heart may be enlarged. It's time for cake. They're doing an ekg, looking at calling in the heart specialist. Oh, it's time to go get some pizza.

Jennifer calls me - it's ok, there's nothing wrong with her heart, it's the monitor. AAAAUUUUUGGGGHHHHHH - then - Thank You Jesus! I was beginning to think of changing my name to Job. Home tomorrow, thanks for praying, we'll keep you posted. Waiting for Jennifer to come home from visiting Sara, she's bringing a milkshake. I think Sara coming home tomm makes tonight a milkshake night. Even it is raining and 57 degrees.

One more weekend

2009-10-08T13:25:00.001-05:00

Sara is eating well, pooping well, and doing well through and through. If she continues this pace we will go home Monday.

The Chow Line is Open!

2009-10-07T22:07:00.001-05:00

Sara was able to eat this evening and did very well. She was only given an ounce, but held it down and wanted more. If she continues to do well she will be back up to 3-4 oz's through the night. I think its time to put the car seat in the van!

Improvement

2009-10-07T13:16:00.001-05:00

Sara looked much better at noon. More like herself. The fluids in her stomach are indicating that everything is working fine. Later this afternoon they will try some food.

Minor Setback

2009-10-07T09:20:00.000-05:00

Sara has an ileus in her intestines. Basically it is when part of the intestines don't work. It is something that can result from being sedated during surgery and part of her intestines have "fallen asleep". It usually resolves itself with a day or two and she might be able to eat later today. This is the same issue that caused her to get distended bowels and our little 5 day trip in the hospital back in August. Pray that it will resolve soon, she get can to eating, and on her way home.

And the peace that passes all understanding….

2009-10-05T13:14:00.005-05:00

Is guarding our hearts and minds in Christ Jesus (Philippians 4:6-7). As we head into the shunt surgery tomm – that is where we are. We have prayed and asked God to heal Sara in such a way that she would not require a shunt. So far, He has said no. So, He will heal her and allow her by His grace to live a great life with a shunt. And we are totally at peace with that. Our faith is not shipwrecked because God said no to our request. It is not a lack of faith on our part or those who have prayed. God our Father in Heaven has decided that the best way we can show His glory and become like Christ is through living with a shunt. And we trust Him!

A well known pastor has said that the area of your greatest pain has the potential for your greatest ministry. Jennifer and I look forward to the day God can use us to minister to other families who live in the NICU for several months. And we have often said to each other – you know it would be harder to minister to them if our testimony was – “Well God healed Sara with a miracle and she doesn’t need a shunt, hope He does the same for you.” God hasn’t promised to heal everyone this side of heaven and now we have the opportunity to help those who face the same dilemmas we have faced.

Some good news today from the CAT Scan. There was a mass of fluid the doc was worried about that was accumulating in a spot on her brain that was causing some developmental problems he had noticed. Guess what? It's gone!! Praise God for that. He can even tell improvement as he checks her each day for that ability. Sara is so much fun to be with. She has these huge smiles and even squeals. Jennifer and I both got some huge ones today. Now if only we can get her home, roll her around and floor, let her sisters play with her, and smother her with kisses - it's gonna be great!!

Please continue to pray for Sara and us through the surgery and hopefully quick recovery before we head home. Pray that no infection will result from the new shunt or anything else that could happen down the road. Pray for a mom who struggles to deal with the heaviness of watching her baby go though her 5^th surgery in the last 4 months. We know it is all going to be ok, but it is not the most enjoyable process. Pray for the docs and nurses, our second family. We will keep you all posted tomm, thanks again for checking in and lifting up.

Not to us, O Lord, not to us,

but to your name give glory,

for the sake of your steadfast love

and your faithfulness!

Psalm 115:1

As of Wednesday - 9lbs 3oz

2009-10-02T19:47:00.000-05:00

Got 6 minutes?

2009-10-01T07:45:00.001-05:00

If you do check this out - Cardboard Testimonies - what would your sign say? (thanks Mrs. Maureen)

New Pics

2009-09-30T10:37:00.004-05:00

Here is Sara this morning. She turned 4 months old last Friday. She is eating 3-4 oz every 3-4 hours. Sometimes even more. She is sleeping well, having some good wake times, smiling, cooing, and being very enjoyable. I have to check her weight from last night and I will give you her updated weight.

Hey dad, just look at me. I'll never do anything wrong, never throw a tantrum, never disobey, I'll be perfect. Can't you tell. (Yeah I can tell, your sisters looked the same way at your age)

YYYAAAWWWWNNNN! I am so tired, could you put your phone up and help me get some sleep. (and no, I haven't been preaching to her, she got sleepy on her own)

Uh, you want me to do what? Oh here goes.. this is really uncomfortable.

Ok, I said her name and got two huge smiles and this is all I could catch on camera. Crazy cell phone camera takes too long to snap.

Shunt surgery scheduled for next Tuesday

2009-09-29T14:10:00.003-05:00

Sara looks great, is acting great, but the CT scan shows a need for a shunt to be placed. The plan is for this to be done next Tuesday morning. She will stay in the hospital until then to be monitored and then receive antibiotics prior to the surgery. For those still praying for a miracle, you still have a chance. He is going to do a CT Scan on Monday just to be sure. So the conditions are set, the Lord knows what needs to happen between now and then. And even though we will pray like crazy for Him to intercede, we are ok with whatever He decides. Thanks for caring and praying. (Pics coming tomm)

CAT Scan - Tuesday

2009-09-28T16:20:00.003-05:00

Not Monday, but Tomm. Based on what he sees, he will decide. If it is bad, then shunt soon. If not we may go home and just have weekly checkups with neurosurgeon. He said he is "pretty sure" she is going to need one. But notice what he didn't say - it is definite. He said the longer she waits the better. Keep praying, keep believing and asking God to show up! He just might do it.

CAT Scan Monday

2009-09-26T10:30:00.003-05:00

That's the plan. So far Sara's head size has either stayed the same or had a very small increase. The fontanel is still soft- all good news. Still praying for God to work a miracle so people would know He still has power to do miracles and give people eternal life - and that they would believe in Him! (John 20:30-31)

The Plan

2009-09-23T15:45:00.002-05:00

Ok, as of Wednesday 9-23 @ 3:46pm the plan is to take a CAT scan of Sara at the end of this week or Monday. Based on what he sees he will go ahead and put in the new shunt or send us home and do it later. Of course I am sure there are 37 other options on the table we don't know about yet. The pediatrician told us - I am praying she won't need the shunt, but I think she will. We are praying she won't. Let's see what Jesus says.

Tough little girl that Sara is. Really came home to me today. She has developed a terrible diaper rash from the antibiotics which loosen the bowels. It is RED RED RED and BIG! Yet as the nurse changed her diaper it didn't even phase her. She didn't even change her expression as she was wiping it. I would be bawling in the corner in the fetal position. That along with the embarrassment from having to explain why I was wearing a diaper and had a diaper rash. But Sara? No big deal. Wow!

2009-09-23T10:03:00.001-05:00

Shunt is out, she is back in room and doing great!

Shunt coming out tomm

2009-09-22T18:48:00.001-05:00

Change of plans because of change in docs schedule. The shunt will come out Wed morning at 9am. From there? We will just watch her and see. Thanks for caring and praying

God said no

2009-09-21T13:09:00.004-05:00

After much praying, fasting, hoping, dreaming, wishing, waiting, more praying God has said no to my prayer request. It's ok, I understand He can't say yes to everything. But this was a small request, surely it wouldn't be too much to say yes to this right? But the answer was no and so yesterday Jennifer got Sara's first smile. Or at least - the first smile to a parent. Sara has also been smiling at her fish aquarium music and light thing in her crib and at the nurses and docs. She also has been cooing. (I wasn't the only one to get a no on this issue- Maw Maw too)

So I get to the hospital this morning for my time feeding her and holding her and what do I get? Zzzzzzzzzzzzzzzzzz She was out! Even after eating (up to almost 3 oz's now) and filling up a diaper, we changed her diaper, maybe she will be awake, maybe she will smile and coo at me, but instead - Zzzzzzzzzzz. Oh well, I can wait. When Jennifer gets there in a little bit she will get all the wake time fun time.

All her cultures have been negative. Now we wait to take shunt out on Thursday or Friday and go from there. There has been some speculation that with the shunt out - what if she wouldn't need one? Well, if you are interested in praying for a miracle - maybe God will say yes to that one.

Thanks to Heather for all the dressing up and pictures this past weekend. In fact we had a guest preacher for Homecoming Service yesterday and Heather texted me during the sermon. Glad I wasn't preaching.

I personally am not down with the headband thing, but if someone goes to the trouble of dressing her up so great I can live with it.

Some definite plans (i think)

2009-09-18T13:27:00.001-05:00

Just saw doc, the plan right now (and it seems pretty definite) is take shunt out next Thursday, let her body rest with nothing in it for a while (week or so?), then put new shunt in. What about a build up of spinal fluid when there is no shunt? He will check her closely and if it builds too fast - put the shunt in right away. He is very happy with how she looks and is showing more and more maturity. So we are here for at least 2-3 more weeks.

Friday Morning Suprise

2009-09-18T10:34:00.003-05:00

Got to the hospital to feed Sara Friday morning and the nurse took the time to doll Sara up a bit. I almost forgot she could actually wear clothes and look like a little girl. Enjoy!

I wish dad would just turn his camera instead of turning my bed on it's side like this, I think I am about to fall

Uumm, bow on head with no hair.... how is that done?? Nurses secret

This blue dress will make my sisters so happy, they love blue and they love dresses - hey Abigail and Emma Grace!

Third test looks good

2009-09-18T08:06:00.001-05:00

So far the third culture for bacterial infection is negative. There was a plan for a fourth, but I think that has changed. The doc has mentioned some other ideas, but we won't really know until sometime today what the new plan is. Thanks for praying and we will let you know when we know.

Sara is looking good!

2009-09-15T10:27:00.003-05:00

She is continuing to improve. She will be tapped today for the third time (I know it seems like the plans change every day - they do), and if all clear then a fourth and then surgery. Her pediatrician is very happy with how she looks and he is doing great. You know there are some blessings we can find in going through this right now. Sara has her days and nights mixed up, up all night, asleep all day. We told them to get that worked out before they send her home, and she probably will. We also were dealing with colic a lot at night, and that seems to have subsided. So you can find those slivers of sunshine on a cloudy day.

Heard an encouraging word this past weekend, maybe it will encourage you also. James 1:2-4 "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." I was listening to a pastor whose podcast I subscribe to preach on this passage. And he was encouraging his church to remember God's purpose in our trials.

You see, Jennifer and I have caught ourselves through this recent ordeal just longing and wishing for Sara to get better and get home. And I think in a way putting our hope in the normalcy that would return when she came home. But God's purpose in our trials is not for our lives to return to "normal". Nor for our situation to be solved and made better according to ours or anyone else's definition of "better". His purpose is for us to be made "perfect and complete, lacking in nothing" Or as Paul would put it in Romans 8:28-29 - to be made like Jesus. His purpose is to make us like Jesus. Now that changes everything in a trial.

We aren't looking for the situation to get better or get solved for our joy to be real. We aren't looking to get through the trial to bring us joy. Our joy in the trial is the work God is doing in us in making us more like Him. Something Jennifer and I knew, but maybe we had lost sight of. Knowing a truth and having to live it are two different things. Maybe that will encourage you, pray that we won't forget it and find our joy in Him to be exceedingly abundant.

Infection still clearing

2009-09-11T13:11:00.002-05:00

The preliminary results from the 2nd culture are negative, so the infection is clearing or cleared. Just to be safe he will take 2 more samples next week to make sure it is still gone. The doctors and nurses have let us start holding her (very carefully, we can't move her around) and feed her. That is nice, and Jennifer and I are noticing changes in Sara. She is locking into our eyes more than she did at home. I am desperately trying to get her to smile at me before she smiles at Jennifer, that's something you can pray about. Ha! She is eating more now, and her weight is over 8lbs after she lost a little bit. Thanks for praying, keep it up! (especially that special request)

Not Much New

2009-09-09T15:28:00.003-05:00

Not much new to report on Sara. Just waiting for the antibiotics to run their course. Supposed to tap her today to check infection, but the plan may have changed until tomm. Don't know why. Thanks for praying, keep praying for no new news until surgery - that would be good.

So Far So Good

2009-09-07T14:09:00.001-05:00

The 24 hour preliminary report on the cultured bacteria is negative. We will know 100% sure tomm. The plan is to check again Wed, Sat, and Mon. If all clear - new shunt next week.

Good Weekend

2009-09-07T10:38:00.002-05:00

Sara had a good weekend. Just doing normal baby things - sleeping, eating, pooping, being awake, talking, walking, ok maybe not the last two. A tap was made of the spinal fluid yesterday to check for infection. We will get preliminary results today and final results tomorrow (48 hours after tap). Hopefully and prayerfully we will see that the infection is clearing. Then later (don't know when yet) he will do 2 more cultures and when we have 3 clean cultures then we can look at replacing the shunt. Until then we wait, pray, and live life.

Back in NICU

2009-09-04T22:19:00.003-05:00

No reason to be alarmed, she was moved back into NICU tonight primarily due to staffing issues. She has continued to progress today. She is eating good, resting well, even feeling well enough for the colic to return this evening. Poor nurses. The neurosurgeon said Jennifer would get to hold her tomorrow. Thanks for praying, keep it up. God has been good and faithful once again. Praying for another good day tomm.

1000 X Better

2009-09-03T08:33:00.002-05:00

Just saw the pediatrician, she said Sara is 1000x better. The other day when we brought Sara in she was worried about life or death. She said she is not out of the woods yet, but much better. She will get some blood today. She has continued to eat well and now it is just wait and heal.

The two bacteria she is fighting could have possibly come from the skin and bowels. What is unusual is that they passed into the blood stream and attached themselves to the foreign body in Sara - the shunt. Thus infecting the spinal fluid which brought on the meningitis. This did not happen during the shunt surgery. Sometime after we left PICU and now. Who knows?? You are so careful, yet your taking her into dozens of doctors offices. Even though we wash hands constantly and require family to wash hands, it could have even come from us. Just one of those risks you take from procedures like this. Can't worry about the why, just get her better and continue to be careful.

Wednesday Night

2009-09-02T22:18:00.002-05:00

Just got back from seeing Sara. She looked her best yet. Sleeping more peacefully than she has in days. Her color has really improved from yesterday, she was very pale yesterday. She is able to take a full feeding now without throwing up - this is good. Her hematocrit level is low, so we may be looking at another blood transfusion soon. I look at her and stare in awe at all she has had to fight through. God has made her strong, I can't wait to see how that translates into toddlerhood, childhood, teenage years (ok I'm scared on that one), and adulthood. Thanks for the encouraging words and emails everyone - they really lift our spirits.

Encouragement for us maybe you too

2009-09-02T11:45:00.003-05:00

One of my favorite dead guys I like to read is 19th century preacher Charles Spurgeon. He had an incredible way with words and was used by God mightily. This was this morning's devotional from the devotional book - Morning by Morning. Kind of timely, Enjoy

Mark 1:30
But Simon's wife's mother lay sick of a fever, and anon they tell Him of her.

Very interesting is this little peep into the house of the Apostolic Fisherman. We see at once that household joys and cares are no hindrance to the full exercise of ministry, nay, that since they furnish an opportunity for personally witnessing the Lord's gracious work upon one's own flesh and blood, they may even instruct the teacher better than any other earthly discipline. Papists and other sectaries may decry marriage, but true Christianity and household life agree well together. Peter's house was probably a poor fisherman's hut, but the Lord of Glory entered it, lodged in it, and wrought a miracle in it. Should our little book be read this morning in some very humble cottage, let this fact encourage the inmates to seek the company of King Jesus. God is oftener in little huts than in rich palaces. Jesus is looking round your room now, and is waiting to be gracious to you. Into Simon's house sickness had entered, fever in a deadly form had prostrated his mother-in-law, and as soon as Jesus came they told Him of the sad affliction, and He hastened to the patient's bed. Have you any sickness in the house this morning? You will find Jesus by far the best physician, go to Him at once and tell Him all about the matter. Immediately lay the case before Him. It concerns one of His people, and therefore will not be trivial to Him. Observe, that at once the Saviour restored the sick woman; none can heal as He does. We may not make sure that the Lord will at once remove all disease from those we love, but we may know that believing prayer for the sick is far more likely to be followed by restoration than anything else in the world; and where this avails not, we must meekly bow to His will by whom life and death are determined. The tender heart of Jesus waits to hear our griefs, let us pour them into His patient ear.

Wednesday Morning

2009-09-02T11:19:00.003-05:00

Sara had a pretty good night according to the nurses. Not as much crying in pain, more restful sleep. I just saw the neurosurgeon and he said she is definitely better. Her spinal fluid is clearer. She is fighting against two types of bacteria. They have added a third antibiotic and watching for any signs of the side effects of all of that. So far the CAT scans have not shown any new bleeding or other complications in the brain. She was even able to hold down 2-3 oz's of pedialyte in the last few hours. If she continues to do that they will try and feed her some watered down formula. In seeing her, she is a bit fussy, but most of it looks like she is hungry and not the pain she felt yesterday.

They will do a new culture on Monday to check for infection. He wants 3 negative cultures before we look at putting in a new shunt. She is still critical, but he said she won't turn for the worse suddenly, but it could happen. He said this takes a lot of time and she has their utmost attention. So keep on praying!

A Long Day

2009-09-01T22:23:00.002-05:00

We went to bed last night at an early time, trying to catch up on sleep. Knowing we would have to wake up for an early appt with the Neurosurgeon. You may remember I posted about a spot on her head he was watching and wanted us to return in a week to check. Well that appointment was originally scheduled for Wed, but got moved to Tuesday due to his surgery schedule. Jennifer always takes the first shift with Sara at night. She is still somewhat colicky at night, although it has improved. I was supposed to switch with her at 2:30. But I woke up before two to paint - peeling screams from Sara across the house. I thought - uh oh, that does not sound good.

I got up and went to help. She had eaten, but thrown up. So immediately your trying to figure out why she threw up. Stomach Bug? shunt? Fever? I was able to hold her and she calmed down and slept nicely until 4. I tried to feed her thinking she was hungry - throw up again. I leave at 5:30 to get some pedialyte, come back we try again at 6:30 - more throw up. More throw up again closer to 8. Now we are planning to go see her pediatrician after the neurosurgeon. At some point in all of this process we thought to check her fontanels (soft spot on head) and there was a definite increase in pressure. A sign that something was wrong with the shunt. Hmmm, thank the Lord for the change in appointment and we would see him at 9.

The neurosurgeon checked her out and was not immediately alarmed, but concerned enough to send us to the ER where he would tap the shunt and make sure it is working. So we eventually made it there, he tapped it and immediately saw by the cloudiness of the cerebral spinal fluid there was an infection. So in the next 37 seconds he tells us the plan. Externalize the shunt. This means he cuts open her stomach, fishes the tubing out of her abdomen where the shunt drains and let it drain into a bag. If there is an infection you don't want it to continue circulating in her body. Let antibiotics clear it up while she was in hospital for 7-10 days and then take out her shunt and put a new one in the other side. We couldn't believe our ears. You have to be kidding me. This is not real. I'm watching this happen to someone else right?

We continue to wait in ER as IV's are put back in Sara, CAT scans are done, X-rays, and then he comes and says they are going to externalize the shunt right now. So we took her to surgery and waited for the very simple procedure to be done. From there we were put in a room where we could not feed her, change her diaper, pick her up - but we could sleep near her, hold pacifier in her mouth, and just be there. At that point I left to go get some things to come back and spend the night. Jennifer was left to tend to her and man did she get the worst side of it.

Sara was extremely irritable, fussy, unhappy all afternoon. Couldn't be soothed. Couldn't hold anything down. And now the docs start coming in and talking about the seriousness of the infection. It is bacterial meningitis. This is the worst kind and you can read about it here or just Google it. It is very much life threatening, could cause more brain damage, loss of hearing and/or sight. Vegetative state is also a possibility. Basically her nervous system and brain are under attack.

The doctor thinks (I do not know to what degree of certainty) that a germ from her skin attached itself to the shunt before it was placed and has been circulating through her body for the last 5-6 weeks. Now it is full blown meningitis. The neurosurgeon believes she will make it, we caught it early enough. We hold fast to his optimism. We hold even faster to our gracious God.

So Jennifer is there by herself absorbing all of this. Then they decide it would be best for Sara (and I think us too was part of equation) to move her into an ICU setting with limited visitation by parents. No visitation by anyone else. We can only go at 9, 1, and 5 around the clock and stay 30 minutes. For Jennifer this was heart wrenching. But we both agree know it is a blessing in disguise. It would be emotionally unbearable to tend to Sara in the pain she is in. We need her to just rest and be int he hands of great nurses. Her condition right now is so critical she has a nurse to herself. They don't even do that in NICU. We have it figured out to where one of us will be there for all but one of the times. And so hopefully we'll get a courtesy room and be much better off.

We kind of feel like a boxer who just won the title in a 12 round decision only to be told by the ref he has 12 more rounds with a fresh boxer to keep the title. But while our strength is limited - His is not! While our faith may falter - He does not. While our emotions may stretch to the breaking point - His hand holding us up only gets stronger. That is what it means to be a Jesus follower and to know personally the Shepherd who leads us beside still waters and through the valley of the shadow of death. Pray for us and Sara of course. We know you will. We'll keep you updated as always.

2009-09-01T16:38:00.001-05:00

Bacterial Meningitis - more later, keep praying!

2009-09-01T13:34:00.001-05:00

Definite shunt infection. Surgery to externalize shunt right now. Simple surgery then to our room.

2009-09-01T11:13:00.001-05:00

We are back in hospital. He thinks shunt infection. The plan- clear infection for a week then new shunt on other side. More later, thanks for praying.

New Pics

2009-08-27T11:04:00.001-05:00

New Prayer Request

2009-08-26T11:45:00.002-05:00

Sara went to see the heart doc yesterday about the murmur they heard in NICU. All is well with that, she has a murmur to watch, but it is very common and they will keep an eye on it for now. We go back in 3 months. For 98% of kids it works itself out on its own. One cool thing we found out at the heart doc is she weighs over 8lbs now!

The prayer concern came this morning at the neurosurgeons. On the top of her head, under the skin there is an angle connector (like an L-joint in PVC pipe) that connects the shunt going down into her brain to the pump and reservoir going down the side of her head. Well the skin on Sara is thin, and the skin on top of that angle connector is white. His concern is that an ulcer will develop and an infection will ensue. (Think of a blister on your skin you get from a shoe rubbing your heel or toe, or you might get one on your hand from raking, shoveling, or playing to much golf).

So for the next week we have to massage that spot, move the skin around and hope it clears. We go see him in a week to see how it looks. If it turns bluish and gets thin like Saran Wrap we have to call him. Worst case scenario - back to hospital for a procedure to cut and lap another layer of skin over it to thicken it up. Yeah, fun.

If you would, pray it will resolve itself and the massaging, time, and the Hand of God would heal it. Thank you all!

Today was the Day

2009-08-22T21:00:00.007-05:00

August 22 was Sara's due date. And Tuesday she turns 3 months. It's been the fastest longest three months of our lives. Our other girls were born in Jan and Dec. At the beginning of the summer Jennifer was saying, boy I sure don't look forward to being big and pregnant all summer. Well, she wasn't serious.

In fact one of the difficult thoughts we have both had go through our minds is - I wish this wouldn't have happened like this. Especially when it has been hard and scary. You think - if only we could go back and not have this happen like this. Why couldn't this have been a normal pregnancy? And the only answer we have come to is - we don't know. But we trust our Father in Heaven and we know He is always wise, good, and trustworthy. And so we forget was it behind and press on to the goal for the prize of the upward call of God in Christ Jesus. Living by faith standing on those truths is a greater reality than wishing away the past.

We have really settled into a nice routine with Sara at home. Other than a few doctors visits and getting therapy set up, this past week was pretty uneventful. We have two more doctors visits this week and then probably none until the end of September, other than weekly therapy.

The issue of colic is still lingering. It is not as predictable as with Emma Grace, more like Abigail's fussy times. Some nights are better than others. To give you an idea of how it's going, Emma Grace asked Jennifer Thursday night - "How can God always be happy if he never sleeps?" Apparently she knows some unhappy sleep deprived humans, must be on TV.

But Jennifer and I have a good system worked out where she takes her the first half of the night and then I come around 3 and take her the rest of the night. That seems to be working. Except Jennifer claims I never hear my alarm go off to come and take over and she has to come and get me or something like that I don't know. I can't help it. You ever are so tired your alarm becomes part of your dream? So I'm not turning off my alarm, but a switch to open the garage door, put up heat shields on my spaceship, or a special seat zapper for that deacon whose falling asleep on the back row. Whatever the case, it's not my alarm. She just doesn't believe me.

Abigail and Emma Grace are doing well with Sara. They have been very patient and helpful. Well, as much as you can expect from a 7 and 4 yr old. Abigail has been great when I am gone to work and Jennifer needs to get things done. If she is fussy she will hold her, give her a pacifier, and help soothe her. It's been cool to watch.

I officiated a wedding in our church yesterday. All through the rehearsal and ceremony I kept thinking about that day is getting closer and closer for my three girls. When the bride came down in all her beauty and glory I looked at that dad, and well, I just couldn't go there. But I figure by the time they are 40 I'll be ready.

I took some pics of Sara last night. She was content with her pacifier on Jennifer's lap and then we took it out to take some pics. So far so good, what a cutie.

Hold on, somethings missing

Is it over here? Look, I'm limited here, I can't look around worth a flip, all I've got is this rooting reflex thing. Don't play games with me, where is my paci?

Ok, I'll try the crazy look!! I'm desperate!! Where is my happy place?

Fine, I will just cry. Is that what you want?

12 weeks old and 7lbs!

2009-08-17T19:58:00.002-05:00

Sara had a good visit to the pediatrician. She has cleared 7 lbs, in fact she is 7lbs 2oz. That means she gained a half a pound in a week. The doctor was very happy with how she looked and acted. So are we.

New Do

2009-08-16T22:30:00.006-05:00

No hair anymore

Why do babies look crazy sometimes?

Sara got a haircut from dad Sunday. The neurosurgeon only shaved half her head before the shunt surgery and I have been meaning to fix that - so today I did. Now she's got the Mr. Clean look. I have this handy little micro ear, nose, whisker, small hair that grows in odd places razor that worked like a charm. It came right off, she didn't move or jerk, and no blood. I also did it when mom wasn't around to lighten pressure of cutting her head open.

Sara had a good visit with the ear specialist Friday. She had her second hearing screening. We learned from her that the antibiotics Sara was treated with at birth can cause damage to the cochlea. I am sure everyone knows this, but the cochlea is the auditory part of the inner ear. Kind of important. If it was damaged it might not show up for 6 months to a year. So we will go back both times. If there is no damage by 1 year she should be good to go. So far - no damage. Something more to pray about, not to worry about, but trust the Lord about. Why sweat it, He's not.

Off to the pediatrician tomm to get last 2 month immunization. Later this week we have her therapist coming in to screen her and then to see the neurosurgeon. After that, the doctors visits will begin to taper off. Thankfully. Hope you had a great day worshipping King Jesus, have a great week!

Happy Birthday Mom!

Sara and the Neurologist

2009-08-14T06:56:00.002-05:00

We had a really surprising appointment with the neurologist yesterday. This doctor has not seen Sara since her brain bleeds were first discovered and the initial CAT scan was done. The NICU pediatrician called him in to advise us about the severity of Sara's condition way back in week 2. That week he informed us that the damage in her brain was the equivalent of a 45 gunshot wound and we should consider the possibility of DNR orders and comfort care.

His tone was just a bit different yesterday. He was ecstatic and amazed at how well Sara is doing. He just couldn't believe how good she looked, how well her reflexes were working, and he said she is acting like a normal newborn. There is one reflex that has a long medical name, but if you turn the babies head, which ever way she is looking she will stretch out that arm and bend the other one behind her head. This is a primitive reflex. But this reflex has to go away if she will ever roll over. If it goes away that is an upper brain ability, not just the primitive brain stem reflex. Well, Sara not only has the reflex, but also stops doing it on her own. Signs of good upper brain development. These are the little things we will start watching for to see how the upper brain has been affected by the infarction and bleeds. So far so good.

The next ability he was looking for was fixing and following. Can she fixate on an object and then follow it. She is too young for that right now. We go back in November.

One other interesting tidbit we learned concerning therapy. All the doctors and nurses have continually encouraged us to make sure we get therapy started, work with her every day, therapy her to death during these first crucial years of brain development. In fact, starting next week we will have a therapist in our home once a week working with Sara and showing us therapy we can do with her also. But no one has ever told us why it is so important and we haven't asked. Our assumption was you wanted to do all you could just to make sure she has the best chance of reaching her developmental milestones. The neurologist gave us a good explanation.

He said if damage to the brain from a stroke were to cause the right arm to be some what paralyzed then therapy for the right arm would send signals to the brain like - "what is this thing moving down here, oh I have another arm". And the brain would begin to create new pathways to control and sense that arm. Obviously in a newborn the brain is more elastic and new pathways can be created easier than in a fully developed adult.

We don't know how the damage to Sara's brain will show up in her development. We had been told it could be as severe as eating, sucking, walking, etc. It could be as less severe as learning disabilities, trouble in Math, speech problems. But as we work with her we can begin create new pathways and prayerfully circumvent possible developmental problems. The brain - very cool thing God created. We are indeed fearfully and wonderfully made.

We are off to celebrate Jennifer's b-day today. Well, we aren't off, we can't really go anywhere. In fact the four of us and her parents celebrated a few weeks ago when Sara was still in NICU. But we sure can go pick up some big juicy hamburgers, play some games, watch a movie tonight, and eat some fudge (yes my wonderful wife has a serious chocolate addiction and wants fudge for her birthday cake). Have a great Friday!

Hanging Out With Mom and Dad

2009-08-12T16:35:00.006-05:00

Hey what you got over there mom? Skittles? oohh I think I may like those

Hah! I got one

No, you can't have it back! It's mine!!

11 Weeks Old

2009-08-11T12:29:00.003-05:00

Had a busy Monday with Sara. Her eye exam was passed with flying colors. She has no sign of ROP, where the blood vessels in the retina are not developed. She also had a good appointment with the pediatrician. Her bowels are good and have been working great. Really great. She is up to 6lbs 10oz. Only 2 more doctor's visits this week. 3 next week.

Of course with everything that happens that is good with Sara we seem to pick up something new to work through. And the great devil of infancy, the scourge of newborns, the thorn in the flesh of babies has shown it's ugly head. That's right. Good ole COLIC has appeared. Just a few hours after coming home from the hospital Sunday we saw the old demon show up, the same monster we had in Abigail and Emma Grace. Colic - no one knows why and there is no cure but time. But until then it takes teamwork, lots of Tylenol, and naps. And that's just for me and Jennifer. As for Sara, patience. So there you go, that's the new situation you can pray for us about.

Jennifer is making some adjustments in her diet so her milk won't contain milk products. Same thing she had to do with Emma Grace. So hopefully in another week or so that can be ruled out as a possible cause.

I know I haven't posted pics in a while, I promise I will tonight or tomm.

2009-08-09T12:50:00.001-05:00

Home. Again. Aaaaahhhhh

A large offerring was presented

2009-08-09T07:37:00.003-05:00

Sara did poop Friday night, but early this morning she did again around 2:45. It was without any help (suppositories etc..). So that is huge. Two in a little over a day keeps the doctor away. She is eating great, she for sure should be coming home this morning with Jennifer while we are at church. Unless the warden has something else in mind. And the fact she did it on her own means we probably won't be going to see a gastro specialist. We are ecstatic.

I had just finished feeding her at 2 and laid her back in her bed when I laid down on the so-called bed/chair/lumbar torture device. I was texting Jennifer who happened to be up pumping at home telling how I just heard her pass gas. But something told me to get up and check her out and viola! Poop from her belly button to her back! What a great sight, I took a picture with my phone and sent it to Jennifer. I was so excited I could hardly go back to sleep. Thanks for praying. It never ceases to amaze me how the creator of the universe cares about even the poop of our children. He is incredible - can't wait to get to church and praise Him.

Sara Rose

Merry Christmas Everyone!

Happy Birthday Sara - 2 Years Old!!

Sara in Spring

Merry Christmas!

Two Steps Forward, No Steps Back

Crawlin', Cruisin', and Mission Trippin'

Summer Fun

Happy Birthday Sara!

Happy Happy Mother's Day

Happy Easter

Sickness and more Good News

Living Life and Having Fun!!

Home Again!

Sara Unplugged

Hospital Life

Happy Sara

Surgery 10am Monday

Change in plans

Infection still clear

Good News!

So far, infection is clear

Infection Still Present

Still in the woods

The Baby that Suprises

Shunt Problems

New pics

Rocking Chair and Infomercials

Happy New Year!!

Merry Christmas

Videos of Sara

Amazing Improvement!!

Good Doctor Visits

6 Months Old and lots to be Thankful for!

New Pics and New Tricks!

Good Week, Fussy Weekend

Sara being Excited

Everything going Great!

Good Checkup and Answered Prayers

Good News

Geauxxxx Tigers!

Our First Week Back Home

Home

Monday Plans and Saturday Scare

One more weekend

The Chow Line is Open!

Improvement

Minor Setback

More Post-Op details

And the peace that passes all understanding….

As of Wednesday - 9lbs 3oz

Got 6 minutes?

New Pics

Shunt surgery scheduled for next Tuesday

CAT Scan - Tuesday

CAT Scan Monday

The Plan

Shunt coming out tomm

God said no

Some definite plans (i think)

Friday Morning Suprise

Third test looks good

Sara is looking good!

Infection still clearing

Not Much New

So Far So Good

Good Weekend

Back in NICU

1000 X Better

Wednesday Night

Encouragement for us maybe you too

Wednesday Morning

A Long Day

New Pics

New Prayer Request

Today was the Day

12 weeks old and 7lbs!

New Do

Sara and the Neurologist

Hanging Out With Mom and Dad