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

Home Again!

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

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

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

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."

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!