This is the story of our precious daughter, Sara Rose. She was born at 27 weeks. This details our journey as a family through the ups and downs of this situation. She is our 3rd daughter, she has hydrocephalus and now lives with a shunt. She is home now and her older sisters adore her. Here we are, living and depending on the strength and grace of our Father in Heaven.
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.
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.
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.
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 intraventricularhemorrhage (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."
Monday, February 15, 2010
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!
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
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.
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!
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?
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.
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!
Wednesday, February 3, 2010
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.
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.
Waiting to get discharged
