More Detailed Information

I feel that I have extended family and friends who are new to Ellie's condition and not sure what is going on, so I'll try to catch everyone up.

Discovering Ellie's condition:
At 18 weeks we discovered in the first ultrasound that her ventricles were enlarged. Simply put ventricles are a holding container for cerebrospinal fluid. This fluid is what we shall call "water" it circulates around the brain along with going down and back up the spinal cord. We needed to keep a very close eye on them to make sure they didn't get too large. As the ventricles continued to enlarge they can put pressure on her brain. So through Emily's pregnancy she went in quite regularly to measure ventricles. Through testing of why the ventricles were enlarged we discovered our baby has Spina Bifida. I would encourage you to google it, I have found out some pretty interesting articles explaining it. Very simply put part of her spinal cord didn't fully develop. Nerves on the spinal cord are a continuous communication train/chain fortunately her communication was disputed toward the end. The caboose of the train includes bowl and bladder control the next 5 cars are her leg control. The higher the number the more control she has so car 5 is feeling in the feet. This is where the doctors were guessing the deformity has occurred. Last week even though Ellie was 35 weeks her head was measuring to be the size of 39 weeks and the ventricles were enlarged enough to be concerned.

Ellie's B-day (1/26/10):
Yes we decided that her late grandmother's (Gail Hansen Petersen Emfield) birthday would be the appropriate day to have Ellie come. Our baby did absolutely fantastic that whole day. Her vitals were great and she was breathing all on her own. She impressed the doctors with making it 36 weeks in the womb and being a complete fighter when she came out. Because shew as doing so well it was appropriate to give her surgery the following day.

Surgery day (1/27/10):
For some background on the surgeries to be performed. First part of the surgery will be working on the deformity on her back. The deformity of the spinal cord is quite low on her back and a small opening which are both very good. It is a very intricate process closing up the opening on her back which was guessed to be 3 hours. Second part of the surgery is giving her a shunt in her head this is a small device designed to drain the fluid out of the ventricles. The ventricles enlarging was a slow process that gradually put pressure on her brain and to reverse the pressure will also have to be a slow process. The brain does not do very well with quick changes. It is also guessed to take 3 hours to complete this procedure. We were very happy our doctor did a very incredible job on our little baby. She handled 5.5 hours of very intense operation extremely well. Again this little fighter was breathing on her and was doing absolutely fantastic.

Recovery: Day one (1/28/10)
Emily and I checked on her early morning and she had been doing really well but was worn out. The first two days have been intense and I don't blame her for sleepy. Ellie had decided that she was a little tired and wanted to give the nurses excitement and would forget to breath once in a while. For safety and to give Ellie a little rest they have put her on a respirator for a little while. She actually breaths a fair bit on her own but she does need some assistance (she's only 2 days old give her a break). The pressures in her head have been decreasing and have been doing really well. We do have some concern with her legs she physically has nerve damage at car (lumbar) 5 possibly4 but at this point only showing feeling up to lumbar 3 and 2 which is hip level. All we can do is wait to see if it is nerves, muscle development, part of the pressures of the brain or something else. Time will tell so we just have to wait and see.

Recovery: Day two (1/29/10)
Ellie has still been needing some breathing assistance we still don't blame her for being on the tired side. We are waiting for her to show us that she will continue to breath on her own. We are also still waiting for pressure in her head to still go down. There are a number of other tests we are needing to complete which we won't be able to until Monday. These tests will need her to lay on her back which she is unable to due to her back surgery. We are so very proud of her and can't wait to see what tomorrow brings. We all want everything fixed right away but in the baby world it unfortunately is different and takes time one day can make a big difference, so we have to see what tomorrow brings. We love you and can't say thank you enough for all that you do and for your prayers.