The Ups and Downs

Tonight as I sit here and write, I have feet swollen so bad they look like one of an elephant's. Physically I have had a good day, but it has caught up to me and now I am hurting and my incision feels like it is about to rip apart. Emotionally I am a wreck. It has been a long day. Jamie and I have faced some challenges today that we never really planned on facing.

The Pediatrician over the NICU step down unit came in this morning and wanted to at least show us the films from Anderson's MRI that he finally had Friday night. There still isn't a report, because we are still waiting for Dr. Tulipan to do that tomorrow. However, seeing the pictures of your baby's head and seeing nothing but fluid where there is supposed to be gray matter (brain tissue) is pretty disturbing. Hearing a doctor say that he isn't sure if the right side of your baby's brain has developed at all is even more disturbing. Then having the doctor look at you and tell you that you should go ahead and file for disability for your newborn baby just puts the icing on the cake.

For those of you who have been following the blog, you are probably thinking one of two things: either 1.) Andrea and Jamie have not been being honest about the details of the baby's brain condition. or 2.) What? I thought it wasn't that bad. I thought we were looking at a case of fluid that may/may not need to be shunted.

I can assure you that one thing Jamie and I have tried to do whenever we blog is to be real, honest, and open. We feel that if we are asking for prayers and support, then those of you who care enough to pray deserve updates and details of what is happening.

So, that leaves question number 2, which is exactly what we were thinking as we listened to the doctor and looked at the pictures. Why are we being told different things by each different nurse/doctor/nurse practitioner that comes to talk to us? Why is no one on the same page? Does anyone REALLY know what is going on or is everyone just giving us their opinions? All of these questions have been running through my mind all day.

Basically the doctor today said that there is a cyst in his brain- a cyst that is full of fluid- lots of fluid. He feels that the cyst grew in place of the majority of the right side of his brain. So basically he thinks that about 1/4 of Anderson's right hemisphere is developed and the other 3/4 is a fluid-filled cyst. Sounds encouraging, huh? So Jamie and I had a moment of shock- I felt like I had been hit by a ton truck. It had never been presented to us in quite this fashion.

Kinsley and Karlie were both able to come to the room and get to see and hold their brother for the first time. It was so good for them to get to finally spend some time with him after waiting so long. However it was very emotional for me when they had to leave. I feel so guilty right now because I am not being able to spend time with them- they are being cared for by others, and I know they are being taken care of and are fine- but I also know they are ready to have their mommy and daddy back home and get back to some type of regularness.

So as I type this tonight, I am emotional and overwhelmed. I just want to be at home with all three of my wonderful children and be able to be a mommy for all of them. I am anxious to find out tomorrow what the neurosurgeon says about the MRI and what his recommendation is. I know that first thing in the morning we are being taken from our current room where we have been getting to spend all day and night with Anderson, over to the Children's Hospital where we will not get to share a room with him. Tomorrow is a big day...there is a possibility that surgery could even be scheduled as early as sometime tomorrow.

Jamie and I have not given up hope, even though that is what Satan is trying to get us to do. We are realistic and know that the MRI does show things to be concerned about. Jamie kept reminding me today when I would have a meltdown that God is still in control- He has a plan for Anderson. We don't know that outcome or the plan, but there is one person who does. So far on our journey we have had good days and bad days, ups and downs. Today was a down day, and tonight I feel like the little engine who could. I feel like I am at the bottom of the big hill and while I feel like saying "I think I can..." as I look toward tomorrow, Jamie has reminded me that together, along with God leading us, we have to say, "We know we can..."

We will get through this. And no matter the outcome, it will not change our love for Anderson. We think he is pretty special. We are not willing to give up on him, label him with a disability, or say that he is not going to be able to do certain things... No one knows what he is going to be capable of doing- until he reaches those points and either does/ or doesn't do them. Until that point, we refuse to give up hope. We refuse to think a miracle is impossible.

Are we concerned about his future? Sure we are. I'm not going to try to put on an act like things are hunky dorey all day long and we don't get anxious or allow ourselves to worry. We do. But we don't allow those worries/fears to overtake us. We don't allow Satan to win that battle. We have too many prayers going up on Anderson't behalf, and we know just how big our God is.

Lord, we believe. Forgive us for our unbelief.

Thank you for your prayers. Many people are asking what they can do for us- PRAY, PRAY, PRAY...that's it. There is nothing more that anyone can give us right now than this. Prayers for Anderson's well-being, prayers for strength for Jamie and I as we face the coming days, prayers for Kinsley and Karlie who don't understand why their mommy, daddy, and baby brother can't come home and who have lost all sense of routine and security.

We will try to get the word out tomorrow as soon as we know what is happening. If we can't get to a computer we will try to have someone post for us. Sorry for the long post- but I had a lot on my mind and in my heart that I wanted to share tonight. Thanks for sticking with me to the end.