Hope for the best, prepare for the worst

Well I'm not even sure where to begin. The last two days have been a overload of information and I'm still not sure we have processed it all. Charli was moved to Lebonheur because they wanted to do an MRI to check the cyst in her head. We knew this was coming eventually but didn't expect to walk in one morning and be notified and moved the same afternoon. Im not saying that Baptist was better than LeBonheur but we were used to it and loved the nurses (and they loved Charli) and it's all very new and overwhelming. Just the size of this place will catch you off guard, not to mention its a maze trying to get in from the parking garage. On the upside Charli has her own room and we can sleep there if we choose. The only problem is its semi private do there are just two lay out chairs behind a half wall. No bathroom, sink or shower.

Charli is continuing to grow and progress, she is now 3lbs and 15oz!! She is really growing like a weed. She is still off her IV and off oxygen. The feeding tube is still in but she is doing great trying to take a bottle. She usually gets around 10-15cc from the bottle, which is great considering we didn't really start bottle feedings everyday until Sunday. (She took all but 5cc this afternoon!) I think the only reason she doesn't finish her bottle is because she gets that milk in her belly and falls right to sleep. We are going to keep working on this and hopefully the bigger she gets the more energy she can spare and she will stay awake for the whole feeding.

She had her MRI on Tuesday morning and did great! She didn't have to be sedated or anything, they said she slept through the whole thing. They told us the neurosurgeon we saw at Baptist would be by later to talk about the MRI. Since we knew it would be a while I went ahead and kept my two week follow up appointment with my Dr. I told her everyone tries to tell me I'm doing too much. She said that's normal because I have a baby in the hospital and I'm running back and forth which is something most post c-section moms don't have to do. But for the most part she told me everything looked good and to take it easy when I can and I'll see her back in 4 weeks.

The neurosurgeon came in around 5pm.  It's one of those things where you want them to come but when you see them you kind of want them to go away because you realize you aren't really ready for what's coming. It's a hope for the best, prepare for the worst type feeling. Essentially, as thought before, she has a sub-arachnoid cyst in the back of her brain, along the midline, which is favoring her right side. It has grown some (millimeters) and there is a concern that it is causing some separation of her cranial sutures (the separate bones of a baby's skull when they are first born). In order to prevent further complications and any intracranial pressure the continued growth of the cyst might cause, he wants to perform a procedure known as 'shunting' the cyst. The procedure has the benefit of reducing the cyst in size, and therefore any of the myriad of problems it can/is causing will be relieved. For example: fatigue, seizures, etc. However, there are risks, and as I understand them, they are:

• Chance of infection - she will be given antibiotics before, during, and after the procedure in order to prevent this
• Chance of blockage - the neurosurgeon feels that there is a low chance of blockage for Charli, due to some technical reason, so we are hopeful in this regard
• Continued care - the shunt is not a permanent solution, therefore as Charli grows it will need to be addressed further, there is a possibility of additional surgery to repair the shunt, or to perform a different procedure altogether, which would allow the cyst to drain normally.

For those of you who don't know what a shunt is its a tube that runs from your head to your belly under the skin that drains excess fluid. Most people that get shunts have hydrocephalus and the shunt is draining the extra cerebrospinal fluid off the brain. Charli does not have hydrocephalus but the cyst is filled with CSF so it's essentially the same thing going down the tube.  They prefer to wait to perform the procedure until she is at least 2 kilograms (approximately 4lbs 7oz) and as there is not enough of a concern to do it immediately, she will be continuing to gain weight (and strength), until she reaches that weight. At that time the doctors will make a decision about when to move forward.

Now, for a less somber topic, let's talk about some of her other progress. First, the MRI showed that her optic nerve looks good (awesome!), and that her corpus callosum is slightly malformed but it is definitely there (also completely wonderful), and that all other areas of her brain look good. As her neurologist said on Wednesday morning, "I have no bad feelings about it" :)! Finally, her platelet count has reversed its trend and is slowly climbing, at her latest check they were at 69,000, we are very encouraged by this. 

We continue to pray for Charli everyday, and we ask that everyone who reads this blog does too. We don't know what God's plan for Charli is, but we know he has one. These are very trying times for us so all I know to do is pray and have faith that God will heal Charli in his own way when she is ready. Any encouraging scriptures you may think of please post in the comments! I pray for courage and strength but I'm very much in need of encouragement these days. :)

                        In the outfit my sister gave me!                                   Everybody does love me!

Oh Mommy you're so funny!