Wednesday, July 22, 2009
Change of Surgery Time
Pray a little earlier folks, surgery has been moved up to 9am. The surgery that was supposed to precede Sara's was done today. Thanks
Preparing for Surgery
Sara is up to 5lbs 12.9 oz (2633 grams), that's more than double her birth weight. She continues to eat well and now we just have to get through the shunt surgery tomm, get her back to eating, and progress to where she eats everything from a bottle or breast and we are headed home.
As I texted from the hospital, we have total peace about her getting the shunt and total confidence in her neurosurgeon. Better yet, we have total faith in our great God! Jennifer is a little nervous, as a mom would be, about the whole surgery thing. It's just heavy and scary to watch your child go through this. But, she also knows she needs it and know it is going to help her. I, being a dad, wish they could do it right now, let's get it done and get home.
Her surgery will be around 11:30. The actual surgery only takes about 20 minutes. There will be an incision in the head, neck, and abdomen. She will receive the system on the left, where the shunt will drain the excess cerebral spinal fluid (CSF) into the abdomen. The CSF is full of protein, electrolytes and other nutrients that are too important to discard. It will not drain into her stomach, but into her abdominal cavity where the body hopefully and prayerfully will absorb it.
Sara has a condition called hydrocephalus. It is almost always a life-long condition. She has excess CSF. She produces each day 1 oz of CSF, just like we all do. This normally circulates through the membranes that surround the brain and spinal cord. It acts as a cushion, provides nutrients and even carries waste products from surrounding tissues.
Because of Sara's intraventricular hemmorrhage (brain bleed) during her first week of life, the blood clogged the drainage system in the ventricles where the CSF is produced. Her problem is not that she produces too much fluid, but that it did not and does not drain well out of the ventricles. Therefore, excess fluid accumulates in the brain and causes pressure and swelling. This pressure can squeeze the brain like a sponge, damaging it. The shunt will allow the excess fluid to drain into the abdomen and give the brain plenty of room to develop. The shunt is called by one website and our neurosurgeon the greatest medical device ever invented. 75,000 people receive one each year.
Right now Sara's ventricles are swollen with CSF. In the pic below you see an example (this is not Sara's CT scan but an example I found on the web - the ventricles are the dark black kidney shaped areas).
The ventricles are where the fluid is produced and you see their normal size on the right. Sara's right now is probably 4 times larger than the ventricles on the left. Her head which is supposed to grow about 1 cm a month has grown 8. Even still, her head size and swelling has been controlled by tapping the CSF and withdrawing it. This used to be done by sticking a needle into the brain and drawing it off with a syringe and hopefully a very skilled dr. Now, they are able to put a reservoir under the skin (that is the bump on her head), and draw the fluid from that reservoir. It is like an accumulation point. They could actually continue to do this and control the fluid in her brain, but every time you stick her head you open up a possible infection spot. And eventually you would exhaust that spot and have the keep moving it. A reservoir is not a permanent solution, a shunt is.
Sara will probably receive her first revision around 3-4 years of age. As she grows up the shunt tubing will have to be lengthened. Because the shunt is a mechanical device, one day it will not work and have to be replaced. When I say mechanical, it is basically a plastic chamber that is calibrated to open and close at a certain pressure. When the excess CSF reaches that pressure, the shunt opens on one end and then the other letting the fluid flow into the abdomen. Interestingly, the opening and closing is controlled by rubies. A ruby is the second hardest crystal behind a diamond and conducts zero electrostatic energy. It is very stable and able to do it's job.
There is between a 2-3% chance that the proteins (blood) in the CSF will clog the shunt and it will have to be replaced. There is a 1.5-2.5% chance of the body fighting against the shunt and an infection setting in. Another interesting point - after about 2-3 months the body will encapsulate the shunt system and actually see it as part of the body and fight to protect it. The neurosurgeon touted his stats concerning those percentages as being the best in the state and among the best in the nation. And he is very optimistic about Sara's chances of success. Once she gets past 6 months with no problems the chances of failure or infection drop drastically.
Pray all goes well tomm. Pray she is able to recover quickly and get to eating quickly so we can get to leavin quickly. The hardest thing as parents will be seeing her sedated, back on the radiant warmer (that's the table she was originally on), back on the ventilator. It's like going back in time to a very dark period early in her life. BUT - we know God has us in a different place and this surgery is temporary. We also know He has allowed everything we have been through, both good and bad, and we trust His sovereign plan and wisdom no matter what happens. We can't say it enough - thanks for walking with us through this and praying for us. We'll let you know tomm how it turns out.
As I texted from the hospital, we have total peace about her getting the shunt and total confidence in her neurosurgeon. Better yet, we have total faith in our great God! Jennifer is a little nervous, as a mom would be, about the whole surgery thing. It's just heavy and scary to watch your child go through this. But, she also knows she needs it and know it is going to help her. I, being a dad, wish they could do it right now, let's get it done and get home.
Her surgery will be around 11:30. The actual surgery only takes about 20 minutes. There will be an incision in the head, neck, and abdomen. She will receive the system on the left, where the shunt will drain the excess cerebral spinal fluid (CSF) into the abdomen. The CSF is full of protein, electrolytes and other nutrients that are too important to discard. It will not drain into her stomach, but into her abdominal cavity where the body hopefully and prayerfully will absorb it.
Sara has a condition called hydrocephalus. It is almost always a life-long condition. She has excess CSF. She produces each day 1 oz of CSF, just like we all do. This normally circulates through the membranes that surround the brain and spinal cord. It acts as a cushion, provides nutrients and even carries waste products from surrounding tissues.
Because of Sara's intraventricular hemmorrhage (brain bleed) during her first week of life, the blood clogged the drainage system in the ventricles where the CSF is produced. Her problem is not that she produces too much fluid, but that it did not and does not drain well out of the ventricles. Therefore, excess fluid accumulates in the brain and causes pressure and swelling. This pressure can squeeze the brain like a sponge, damaging it. The shunt will allow the excess fluid to drain into the abdomen and give the brain plenty of room to develop. The shunt is called by one website and our neurosurgeon the greatest medical device ever invented. 75,000 people receive one each year.
Right now Sara's ventricles are swollen with CSF. In the pic below you see an example (this is not Sara's CT scan but an example I found on the web - the ventricles are the dark black kidney shaped areas).
The ventricles are where the fluid is produced and you see their normal size on the right. Sara's right now is probably 4 times larger than the ventricles on the left. Her head which is supposed to grow about 1 cm a month has grown 8. Even still, her head size and swelling has been controlled by tapping the CSF and withdrawing it. This used to be done by sticking a needle into the brain and drawing it off with a syringe and hopefully a very skilled dr. Now, they are able to put a reservoir under the skin (that is the bump on her head), and draw the fluid from that reservoir. It is like an accumulation point. They could actually continue to do this and control the fluid in her brain, but every time you stick her head you open up a possible infection spot. And eventually you would exhaust that spot and have the keep moving it. A reservoir is not a permanent solution, a shunt is.
Sara will probably receive her first revision around 3-4 years of age. As she grows up the shunt tubing will have to be lengthened. Because the shunt is a mechanical device, one day it will not work and have to be replaced. When I say mechanical, it is basically a plastic chamber that is calibrated to open and close at a certain pressure. When the excess CSF reaches that pressure, the shunt opens on one end and then the other letting the fluid flow into the abdomen. Interestingly, the opening and closing is controlled by rubies. A ruby is the second hardest crystal behind a diamond and conducts zero electrostatic energy. It is very stable and able to do it's job.
There is between a 2-3% chance that the proteins (blood) in the CSF will clog the shunt and it will have to be replaced. There is a 1.5-2.5% chance of the body fighting against the shunt and an infection setting in. Another interesting point - after about 2-3 months the body will encapsulate the shunt system and actually see it as part of the body and fight to protect it. The neurosurgeon touted his stats concerning those percentages as being the best in the state and among the best in the nation. And he is very optimistic about Sara's chances of success. Once she gets past 6 months with no problems the chances of failure or infection drop drastically.
Pray all goes well tomm. Pray she is able to recover quickly and get to eating quickly so we can get to leavin quickly. The hardest thing as parents will be seeing her sedated, back on the radiant warmer (that's the table she was originally on), back on the ventilator. It's like going back in time to a very dark period early in her life. BUT - we know God has us in a different place and this surgery is temporary. We also know He has allowed everything we have been through, both good and bad, and we trust His sovereign plan and wisdom no matter what happens. We can't say it enough - thanks for walking with us through this and praying for us. We'll let you know tomm how it turns out.
Tuesday, July 21, 2009
This girl likes to eat!
Hey, you got any more of this stuff out back?
Sara is flying through these bottles. She has now taken 4-5 in a row, the entire thing. It is so cool. They told us a switch would flip and she would have it - and boy were they right! I was planning on letting you all know that she has moved to getting a bottle on every other feeding. But she is doing so well, I wake up this morning and she is now getting a bottle every 2 out of 3 feedings. I think we are moving into the hospital today.
We have our meeting with neurosurgeon today to discuss the shunt surgery. I will let you all know specifics so you can know how to pray. Thanks always for praying for Sara and our family. And while you do that, don't forget to praise Him for all He is doing!
Monday, July 20, 2009
35 weeks (8 weeks old)
Here we are at the magical 35th week. Now the discussions can begin about going home. If it weren't for the shunt surgery this Thursday they may have come pretty soon. But, the surgery will be so good for her, it won't be much longer. As I mentioned a few days ago, after the surgery once Sara gets back to where she is now and eats all her food from a bottle around the clock - Vominos Casa - Let's Go Home! (that's my pathetic spanish learned from Dora the Explorer)
Sara is up to 5lbs 11.6 oz. In fact she is 2 grams from doubling her birthweight of 1300 grams. When I weighed her last night I felt like spitting on the scale just to get the two grams. (Or I could have put my pen on the scale and been a little less like I was still in jr. high) Sara is now 18 3/4 inches long.
The eating is even getting better, yesterday at noon and this morning at 6 she at the entire bottle of breast milk. It was only about 46 cc's (30cc = 1 oz), but for her it was huge. She definitely has it down and is getting the endurance. Both nurses we talked to last night thought it was a miracle that Sara could even eat from a bottle. It is amazing what God can do, and we are thankful He is doing it!
Big week for Sara, we meet with neurosurgeon tomm to discuss the surgery, surgery Thursday, prayerfully we get things rolling again on Friday and it is just a matter of getting it all down before we head home.
Spa Nite in NICU
Yes, the little girl got the total package - bubble bath, massage, warm towel pat, lotion rub-down, left stark naked to pee on the scales - it was the full treatment.
Sara is up to 5lbs 11.6 oz. In fact she is 2 grams from doubling her birthweight of 1300 grams. When I weighed her last night I felt like spitting on the scale just to get the two grams. (Or I could have put my pen on the scale and been a little less like I was still in jr. high) Sara is now 18 3/4 inches long.
The eating is even getting better, yesterday at noon and this morning at 6 she at the entire bottle of breast milk. It was only about 46 cc's (30cc = 1 oz), but for her it was huge. She definitely has it down and is getting the endurance. Both nurses we talked to last night thought it was a miracle that Sara could even eat from a bottle. It is amazing what God can do, and we are thankful He is doing it!
Big week for Sara, we meet with neurosurgeon tomm to discuss the surgery, surgery Thursday, prayerfully we get things rolling again on Friday and it is just a matter of getting it all down before we head home.
Spa Nite in NICU
Yes, the little girl got the total package - bubble bath, massage, warm towel pat, lotion rub-down, left stark naked to pee on the scales - it was the full treatment.
Saturday, July 18, 2009
Waking up on a Saturday morning
moannn, hmm, is it already time to get up?
ssttrreeettcchhh
yyaawwnnn, oh man i'm so tired, another night in this place?
Oh! Its you! I didn't see you there
And you too? you people in your scrubs are always hovering over me
I just want to know, can't a girl get some privacy?! here i am in my undies and you come along and uncover me letting all that cold air in. 
You know, just because I can't do anything doesn't mean i have to be treated like this, you hear me over there?
Now, I'm gonna say this one more time, treat a girl with some respect and get me some covers! Got it!?
Now, was that so hard? Aahhh that is so nice and warm. This is what Saturday mornings are supposed to be about.
Breakfast time. Milk through my nose while I suck on a piece of rubber, can't beat it!
Sara has continued to improve. In fact the last three bottle feedings have gone really really well. She almost took the whole bottle last night at midnight. They have been telling us that all of a sudden a switch will flip and BOOM, she's got it. It appears that may have happened. She is even waking up and looking hungry for most of her feedings. This is all great improvement. She also continues to breast feed really well. Jennifer is very optimistic that when she gets home she can go all breastfeeding with no problems.
She has been off of all O2 assistance since Wednesday morning and is doing great. In fact, as you can tell in the pics, they moved her feeding tube to her nose so she could get a better suck. The pediatric doctor told us yesterday that after the shunt surgery once she gets feeding well she's going home. That's is almost too exciting even to think about. But it's coming.
(Thanks Aimee for the pics)
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