Saturday, November 7, 2009

Welcome!

Hi there!
Welcome to Carson's Corner and our new blog. I want to keep everybody as updated as possible with how Carson is doing, and how everything is going. We are only 4 days away!!!!!!!!!! We are so excited to have him with us. Please keep praying for him and for us. Bob's nickname for me has always been mess, and right now that couldn't be more true :) I am a frazzled tizzy. We leave tomorrow for La., basically just to be down there... get checked into the Ronald Mcdonald house, and do the pre having a baby by c-section stuff. The surgery is set for 8 am Wednesday morning. It isn't until he is here that we will really know about the Spina Bifida: how he is, and about his surgery. We do know that God is in control, and that He has his hand upon our little boy.
This has indeed happened for a reason, and God means everything for good- even Spina Bifida. Here is a little rundown of whats going on, and what you can pray for.
We really don't know anything about Carson's condition. We have heard some conflicting, speculatory reports but nothing is solid or sure. Most drs. recently have been very much telling us what happens on average.
His cyst is approx. 3-31/2 inches and growing, and that is on the scale of very large for SB. It's unknown if it's skin covered. Skin covered is good because then the infection risks at birth are lower. Because of the size they will do surgery before we leave the hospital. This surgery most likely will take place withing 24-48 hrs. depending upon his condition of health, and tolerability to the surgery. He currently only shows mild chiari malformation (displacement of the spinal cord) this is most likely not going to change after birth. He also only currently shows slight hydrocephalus, if any, His head is measuring on the bigger side of normal- he could have a small head and have hydro. or a big head and have none or little hydro. (not known) It is however not severe enough that his head is above large like most Sb babies, which is good. The presence of nerves in the cyst is unknown until the surgery takes place. Dr. Miller (LA perinatologist) said that because of the size of the cyst you can count on there being nerves. ???? another unknown. Meningocele, which is the nerveless type is so rare that they really don't consider it.
They guess his cyst to be L2/L3 This is middle range. The lower the defect typically means less damage. At his level the sacral level which controls bowel/bladder are affected, and middle lumbar which controls possibly his calf muscles to down his leg. another huge ?????? They believe his foot is clubbed this is fixed by another surgery and may or may not represent permanent foot damage.
Delivery day is 11/11 at 8 am at Hollywood Presbyterian hospital. There will two teams inside the operating room- 1 for me- 1 for Carson. As soon as he is born he will be taken directly to Hollywood pres. Nicu where he will be assessed. If he is in good health and they don't feel he needs extra care they will keep him there for a while (few hours to a day) If he needs extra care they will stabilize him and immediately transfer him to La childrens NICCU ( which is right next door, but they still transfer my ambulance) :) I, of course am going to be in recovery for several hours and can't leave Hollywood pres. for at least 24 hrs. Bob and Mom get to go into the NICU in both hospitals right away. Other visitors get to go accompanied by Bob or myself after 24/48 hrs depending on Carson's stability.
Surgery whenever that might be (usually within 48 hrs.) will take place to patch the cyst and close the defect. If he has hydrocephalus present they will insert a shunt at the same time they do the closure surgery. The closure surgery alot of times leads to Hydrocephalus so he may develop it, and need a shunt afterwards. We will stay in the hospital for about 2 weeks to keep that monitored ( 90% of babies need shunts placed, but after two weeks you're chances of developing it decrease).
As far as how long we will be in the hospital we don't know... but Thanksgiving is what I've set as our goal :) Thank you for all your thoughts and prayers. Coming soon will be some pictures of the cutest baby ever :) Here we Go!!!!

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