Wednesday, July 22, 2009

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.


  1. We will be praying! She is such a precious baby girl - thanks for keeping us all posted so frequently. I feel like she is part of my family now too.

  2. Thanks for keeping us updated. Thanks for the explanation of the bump on her head as well. I will continue to pray for her.