First the little things that were on my mind about San Francisco:
I was thinking about how we hated driving in that city and how difficult it was to find a place to park, but that after being there for the 3-4 months we would be pros at getting around.
I thought about the walks we would take if me and Liam were healthy enough a few weeks after the surgery. The hospital said we could go for walks as long as I had a wheelchair along in case I got tired. There was a park down the road from the hospital and we thought how familiar we would be with this park in the next few months.
There was also a jamba juice down the road from the hospital near the Family House. I love Jamba Juice and we had went there a few times before surgery. They had a deal where you could buy a $30 gift card and you got a free smoothie. I got that deal thinking we would definitely use that up and that maybe if I couldn't eat other things that maybe I could still drink a smoothie. I still have that card with about $25 left on it, there isn't a Jamba Juice in Alaska. :(
There was also a San Jose Sharks hockey game the 3 weeks after my surgery and Dereck and I hoped that if the doctors would allow it, maybe we could get out of town for a few hours and go see the game. Obviously we never made it to the game. :(
During the week we were there for tests we tried to see as much as week could and the stuff we missed we figured we could see after the surgery. We tried to go to Muir Woods but the day we drove there it was really foggy and we couldn't see much. I also wanted to make it to Napa Valley at one point along with a few other places in the bay area. We never made it to any more places and I wonder if I'll ever make it back there or not. I wish I could go to that hospital for my next pregnancy, mainly because I feel a kind of longing to be there, but also because I had the best surgeons in the country working on me, why wouldn't I want the best again. Too bad Alaska and San Francisco have to be so far a part. :(
The second thing on my mind that night was regarding the hospitals NICU:
One of the big things I remember about the week leading up to the surgery was our tour of the NICU there. I remember seeing a little boy in the NICU with hydrocephalus, Liam also had hydrocephalus. Liam's was caused by his Myelomeningocele, but I am not sure why this baby had it.
He was waiting to go into surgery to get a shunt placed to help drain some of the built up fluid. His head was so large compared to the rest of his body and it made me think about the size of Liam's head. I felt so sorry for this baby, but looking at him really made us think about why this fetal surgery was so important for us to want to get for Liam. The hope was that with the defect corrected in surgery, the fluid would be able to drain properly, and he wouldn't need to have a shunt placed after he was born. The idea of a shunt was scary. The thought of my baby needing another surgery after he was born is something we were trying to avoid, not to mention getting a shunt placed would raise his risk of getting an infection. Many things can go wrong with shunts; they can get obstructed, have some sort of mechanical failure, and sometimes need to be replaced. They also need to be continually monitored for effectiveness, which would mean even more doctor visits.
I have yet to see a baby with hydrocephalus or spina bifida in the NICU where I volunteer. I hope I never do, but if I come across a baby with either condition that does need some cuddling, I don't know if I could do it. That might just be too much for me, but I guess I won't know till it happens.
I was looking at this page http://fetus.ucsfmedicalcenter.org/spina_bifida/ from the fetal treatment center at UCSF where I had the surgery today. There are few short videos on the page. Seeing a video of one of my surgeons, the head of fetal surgery, speaking about the surgery brought back memories. I also looked at all of the pictures and info about all of the staff that worked with us, man I miss that hospital and all of its wonderful surgeons and staff. Although I lost Liam, I will never forget this hospital and its staff, they all do such wonderful work and research trying to help fetuses and babies have a chance at a better life. I probably write about it way too much, but that 2 weeks we spent in San Francisco and at UCSF changed my life forever.
And in case you didn't know what I was talking about above, here is a sum up of what hydrocephalus and myleomeningocele are?
Hydrocephalus is a condition in which there is excessive accumulation of fluid in the brain. It was once known as "water on the brain" but the water is actually cerebrospinal spinal fluid (CSF). The excessive accumulation of CSF results in abnormal widening of spaces in the brain called ventricles. The widening creates potentially harmful pressure on the tissues of the brain.
MyelomeningoceleSpina bifida is a congenital defect consisting of an opening in the spinal column. The most severe form is called myelomeningocele. Most children with this birth defect survive, but they can be left with many disabilities, including paralysis, difficulty with bowel and bladder control, a Chiari II malformation, hydrocephalus (excessive fluid in the brain), and mental retardation. The higher the spinal opening occurs on the back, the greater the impairment.
I just thought this was a good set of pictures to show the fetal anatomy of myelomeningocele before and after fetal surgery
Thanks for sharing the medical info, I wasn't totally sure about the conditions. It must be hard for you to be so far away from San Fran and the excellent hospital, the area must be full of so much hope. Obviously from before the surgery. I'm thinking about you all the time for sure :)ReplyDelete
Thanks Jessica. It's like what you said in your post about wanting to be at the best possible hospital for your next pregnancy. It's hard to imagine wanting to go anywhere else.ReplyDelete
Thanks for the information! I'd send you a jamba juice smoothy but we don't have one here either... I think it's great that you can volunteer in the NICU..I would like to do something like that as well. I think it would be difficult but so rewarding at the same time. I'm thinking about you!ReplyDelete
Thanks for sharing this. I can understand it being hard for you to be so far away from this hospital. I hope that when you're pregnant again that you're able to use them. Thinking about you...ReplyDelete
I understand missing the hospital. It was a defining time of my life too, at Vanderbilt. The staff are so great and caring. It all gets so tied up in feelings about the pregnancy too.ReplyDelete