Summer Fun

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!

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

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

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

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

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!!

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