He can and He will...If you let Him

Tonight as I was lying down to go to sleep, I was talking to God and thanking him for all of the blessings in my life. As I started thinking about all of these blessings, I realized how much God has been by our side and taken care of our family- especially with Anderson. Don't get me wrong, I have known what a blessing he is, but I think I got caught up in the hustle and bustle of everyday life and allowed myself to not be as much in awe and thankfulness as I should be. The more I thought about it, the more awake I became. I could not sleep. I decided that I needed to remind myself of the entire journey that we have been on with Anderson- just to remember what a blessing he is and to remind myself of how God was with us throughout the entire journey.

One of the things I did was went back to a podcast of a sermon at our church back in April. It was the first week in a study we were doing on living a Fearless life. During the sermon, our preacher shared one of the posts from the blog that Jamie had written. It described the events of the 20 week ultrasound with openness and emotion. As I listened to it tonight, I sat and cried. I began to remember all of those feelings of uncertainty. I remembered the events and feelings that day in the doctor's office. I remembered how no matter what obstacle we faced, God gave us the courage, strength, and ability to face all of them. Those of you who know Jamie and me know that we would not be described as strong people. If you had told either of us that we would face something like that, it would have scared us to death. And if you had told us we would have the faith and strength to face it without fear and without letting the unknown completely take over our everyday thoughts, we wouldn't have belived you. But what we know now, is that we still aren't strong. God is the one who gave us the ability to make it through what we went through. There are many instances from that first visit until the present where God has shown his presence in our lives.

We had no idea what to expect with Anderson. Even after his birth we had doctors telling us that we would have major delays. I know that we are still on the beginning end of his journey, but we could not be happier that so far God has proved the doctors wrong. Anderson is the happiest baby with the sweetest personality. During our last ER visit, it was a little comical to sit back and watch the doctors (especially the neurology folks) come in to see him after looking over his medical records. Because they had a picture in their head after reading his medical records, and when they would walk into the room- the picture they previous;y had didn't match what they saw. You could see it on their faces. They were amazed. I like to think that God gets a chuckle or two as he watches, too. Because medically, with Anderson missing his Corpus Callosum, and with a large cyst in his brain full of fluid, he should already be showing signs of developmental delays- but he's not. And we give God all the praise and glory for that.

I think God has big plans for Anderson. I think when he gets bigger he is going to have quite a story/testimony to share with others. I think his future looks bright and the opportunities are endless. But no matter what he does, he will be living proof of how God works in our lives.

I know there are some of you who read this blog who may be going through struggles or storms of your own. I know some of you may be going through something that has overtaken your mind with fear and worry. Maybe you are so afraid of what's going to happen, that you are sick, you feel hopeless, and you feel like you can't face another day. I think God wants me to do more than just be thankful and share updates of how Anderson is doing. I think God expects me to share Him with all of you. I think I now have a responsibility to help others who are struggling. I want you to know something I have learned. No matter what is going on, no matter what storm you are in or what obstacle you are facing, you can give it to God. Give it to him- quit carrying it around yourself. He is in control anyway, so quit trying to take the steering wheel away from him, and let him have it. Give it to him, let him carry it, trust him, and see what happens.

The situation with Anderson is not the only fear that I handed over to God. I have been through other struggles where I had to "Let go." I am learning to let go and let God-no matter how big or how small the storm seems. It's not easy. But every time I have given something to him, he has given me the strength and courage to face it and come out on the other side. Now, please realize that by giving it to him it will not necessarily make it go away. It doesn't mean that it will turn out the way you want it to. It does mean that you acknowledge that God is in control of the situation and that you trust him. You have to know that no matter what he will take care of us- he will give us what we need.

He can help you, and He will...IF you let Him.

Growing...

Everyone around here seems to be growing up too fast! Kinsley is in 1st grade and acting more mature everyday. Kindergarten was so good for her- she is slowly beginning to come out of her shell. I already know that we are in trouble when she gets older- trust me, I tried to take her shopping and already we are having to compromise on what kind of clothes she can wear! I better start praying about that now.

Karlie celebrated her 4th birthday today. She informed me that she feels much bigger and thinks being 4 is the best! She seems to be pretty mature for her age, so honestly she already seems older than 4. She has had a great birthday- one more party next weekend will finish up the celebrations. She loves her preschool this year because she is in the older class. Most of the kids in her class will go to Kindergarten next year, but because of her birthday, she will go through the oldest class twice. She is already getting a love for learning. She loves writing her name, practicing writing letters, and is already wanting to know how to spell words. She and Kinsley spend a lot of time "playing school" where Kinsley is always the (bossy) teacher and Karlie is the eager student. It is quite comical to listen to because Kinsley doesn't miss anything her teacher at school says, so she is eager to come home and repeat it to her sister.

Anderson went for his 4 month check up today, both with his neurosurgeon and his pediatrician. He is growing up so quickly! From month to month his development seems to be in fast forward. I don't know if I just took it for granted with the girls or what, but Jamie and I are amazed every day at the new skills he develops- we don't remember noticing every new thing the girls did at this age. I guess we are noticing his because we are constantly watching for any delays or difficulties that the doctors have told us about...we're still waiting. So far he is doing AWESOME. His pediatrician couldn't believe how good he looked. She laughed at his sweet personality. He smiles ALL the time, laughs, squeals, and his new trick- he blows raspberries- and thinks its hilarious.

Jamie and I feel like we have been blessed greatly with our three children. We know that in the past we took the health and development of our girls for granted- thanks to Anderson we no longer take ANYTHING for granted. Life is too short to not enjoy every single minute and be thankful for those minutes. They go by so quickly...better savor each of them!

Here are a few more pics for you to enjoy...

The Good News....

So as many of you know, Monday night/Tuesday morning were very frustrating and trying. We were back at the hospital with a shunt that was swollen from the head all the way to the abdomen. When I say swollen, I don't mean just a little bit- I mean SWOLLEN. We didn't get a lot of answers, we felt like we were on a roller coaster every time a doctor would come in and say "you're going home" then 10 minutes later we hear "he may have meningitis" and then in yet another 15 -20 minutes "no he doesn't...you're going home." However, this frustrating 13 hours in the hospital ER did lead to some very positive news...news that we couldn't have been happier to see.

For those of you who followed the blog right after Anderson was born, you probably remember this post- the one from the Sunday that we had a really bad day. The post about the doctor who told us that we needed to go ahead and file for disability for our less than a week old son. The post that described how that doctor showed us the films from the 1st MRI and pointed out all of the fluid and lack of brain tissue. The post where the doctor told us a cyst grew in place of the right side of Anderson's brain...remember?

You also may remember how the last time we went to see our neurosurgeon I asked about having another MRI performed now that Anderson has his shunt and the cyst should be smaller- you know, just to see what is there. If you read this post, you remember that we were told they MIGHT do a repeat MRI but we would have to wait until Anderson is at least 6 months old. We were also told at that visit that "Whatever is going on up there is out of our control- it is up to a higher power."

It certainly is. Our little trip to the ER this week resulted in Anderson having a series of x-rays, 3 shunt taps to draw fluid, and an MRI. Yes, we got to have an MRI. And when one of the neurosurgeons came in to see us, he kept remarking at how good the MRI looked and how impressed he was.

"I want to see it!" I said.

He kind of turned slowly toward me and gave me a look like "you won't know what you're looking for. Why do you want to see it?"

"I'm not leaving here until I see it. I want to see the films. I saw the films from his first MRI and I know what I'm looking for...I want to see now that the cyst is smaller- what is there? Empty space? Brain tissue? What?"

He smiled. He said the MRI looks great- he went on to tell me "Oh, there's brain tissue there alright." And he went to find a computer.

When he led Jamie and me to the computer, he had pulled up one picture from the first MRI and one from Tuesday's. I didn't need a medical degree or an explanation from a doctor. ..I saw what Jamie and I already knew was there.....gray matter- which represents BRAIN tissue.

Anderson is NOT missing most of the right side of his brain like we had originally been told. PRAISE GOD! I looked at the doctor and told him that the MRI pictures were nothing but ANSWERED PRAYERS. I told him he had no idea how many people out there have been praying for this baby. He didn't say anything in return- just smiled.

So even though the night/day was frustrating, we came home from the hospital full of THANKSGIVING and PRAISE for more answered prayers.

We have said from the beginning that we REFUSE to give up. We REFUSE to label Anderson. And we REFUSE to lose faith. God is working all around us every single day. Thank you to all of our friends and family who believe in the power of prayer and take time to remember us in those prayers. Thank you for not giving up, thank you for all of your support when we need it most. We are truly blessed in every way.

Growing...

Things are busy around here. So I've been told that even if there's no time to write, I must keep pictures updated. So...here a few new pics.

"How can I get this in my mouth?"

Always cheesing...such a happy baby.

Cheering on the VOLS with daddy! Go big orange!

Humbled at the Gas Pump

One of Jamie's sisters came home this weekend and stopped by and got all of our children and took them with her for the night (thank you Aunt CaCa!). Since we were childless for a night, Jamie and I decided to go out to eat. As soon as we got in my car to leave, we heard that all-to-familiar sound of the LOW FUEL warning. So we stopped at a gas station close to our house to fill up. I went in to pay, while Jamie took the duty of pumping.

While he was pumping, another lady pulled up on the other side of the pump. She was having trouble getting the pump to take her debit card, so she finally stuck her head around and asked Jamie why in the world it was asking her for a zip code when she just wanted to use her card? Jamie helped her get everything fixed and working, and she laughed and said "Well, I'm from Centerville and I'm not used to all of this technology." (For all my Centerville friends, she was only joking...she is a very educated lady who had just never been asked for her zip code to pump gas before.)

Jamie said, "Oh really? My wife teaches in Centerville."
"Really? What's her name?"

He tells her my name and then they begin naming different teachers that they both know- making a few connections along the way.

She makes a comment about me driving from Columbia to Centerville everyday and says its not too bad, she's been driving from Centerville to Columbia for 20+ years. So Jamie asks where she works, and they are able to make some more connections of people they both know.

It's about at this point that Jamie notices the lady's face light up...
"Did you and your wife just have a baby?" she asks.
"Yes. We had a little boy born in June."

She smiles and says, "I've been praying for you. You are on my prayer list and I have prayed for you and your family every day."

WOW.

How humbling it is to know that there are people out there who we don't even know who have been praying for us. What a wonderful experience to stop to get gas, help someone on the other side having trouble, and find out she is one of those people who have been praying.

Not only has she been praying, she also has raised children born with a disability. She has walked in our shoes. She is much farther ahead in her journey than we are in ours...and what an inspiration she was to us.

Thank you Lord for confusing this sweet lady at the gas pump so we could have the opportunity to meet her.

Doctors, Development, and School

I apologize that it's been so long since I've updated. Things around here are a little busy. :)

Let's see...where should I start? Oh yes, updates from the neurologist. Last Monday Anderson went back to see the neurosurgeon. We were thinking they would check lots of different things and tell us how wonderfully he is doing. Wrong. We waited in the waiting room for 2 hours, then when we finally got back to the room, the doctor came in and looked at his shunt- said the incision and the shunt looked great...do we have any quesions. Yes- why did we have to wait 2 hours for you to spend 30 seconds with us? I didn't really ask that, but I did ask a few questions. (Just to make myself feel better about the amount of time we were in the room! HA)

One of the questions that I asked was about a follow-up MRI. I asked when we would do one to see just how much the right side of Anderson's brain has developed now that the fluid is gone and we should be able to see more. The doctor tells me that he wasn't really planning on doing another MRI. His words were, "All we have control over is the shunt, and the fluid. Anything else going on in there is up to God and is nothing we can control. However, if you want an MRI so that you will know what's going on, I would at least like to wait until he is 6 months old so that we can get better pictures." Jamie and I both know that God is in control- He has already proven that by how well Anderson is doing. However, as a teacher, I think I would like to know what is there so that I know as Anderson grows how hard I can push him- I know he can always exceed expectations, but I think it's also good to know what all we are working with. What do you think? I'd love to hear some other opinions...

That same day, a lady from TEIS (TN Early Intervention) came to the house to go over Anderson's developmental screening that they did when he was 1 month old. Basically, he does NOT qualify for their services based on developmental delays- because right now he is doing what he should be doing- no delays!!! We were thrilled to hear this. The best thing is that he can still receive their services based solely on his medical diagnosis of Agenesis of the Corpus Callosum and Hydrocephalus- so once a month, an early intervention teacher will come to our house and she will give us ideas of how to work with Anderson to get him to meet different milestones, both physical, cognitive, social, and adaptive. We are really looking forward to this- having things that we can do with him every day to make sure he does not fall behind on milestones is exciting for us- we want to be proactive, rather than realize he is behind and try to play catch-up.

Also last week, Anderson finally had his circumcision done. It was not a good day, there were some complications. We go back in a month to see if the procedure got the desired result- if it didn't, then Anderson will be scheduled to have it fixed surgically when he is about 8 months old. So while it seems funny, we are praying that "things down under" are like they should be so that he does not have to be put to sleep to "fix" anything.

The last update is more about me than it is Anderson. With the school year getting ready to begin, lots of people want to know if I am returning to work. It's really funny how some people ask- "You AREN'T going back to work, ARE you?"

I realize that in sharing Anderson's story and being completely open and honest, many people feel like they have become a part of our story- and I love that, because you have. If you have followed our story and prayed for us, then you are a really big part of our story. I also realize that if I put information out there, I have to be willing to get opinions from anyoe who reads this blog...good or bad. And that's okay because I have prepared myself for those.

The answer is YES I am returing to school. I am going back August 2. I know that some of you are cringing as you read that- but that's okay because I am confident in my decision to go back to work. Jamie and I prayed a lot about it. At one point in the hospital, I remember looking at Jamie and telling him there was no way I could go back to work. However, Anderson is doing so great right now. He is not going to a daycare- he will be watched by the same lady who kept both of the girls from the time they were 8 weeks old. She isn't a babysitter- she is like family. The girls think she is part of our family. She will be keeping Anderson and Karlie at her house, and when Karlie is at preschool 2 days a week then she will have Anderson all by himself. I realize that in a perfect world every mother would be able to stay home with all of her children until they start school, but that isn't how it always works out. And if I can't be home with them, then at least I know that they are with someone who loves them just as much as I do and takes wonderful care of them. I don't know what we would do without her.

So I realize this is really long- oops. I need to post updates more often so they can be shorter. Sorry. Thanks for reading to the end! Please keep praying for Anderson and that he will continue to do so good. Pray for me as I return to work, as I know things around here will get a little crazy and chaotic for the first few weeks until we get settled into a routine.

Getting Hefty

Anderson went back to his pediatrician for his 1 month check-up today. He has gained 3 pounds since leaving the hospital and has grown 2 inches! He is now up to 10 pounds 6.5 ounces and is 22.25 inches long.

She said he looks great and she is very pleased with how he is doing. His incisions are pretty much healed so we can finally quit doing sponge baths and GET IN A TUB! WooHoo! So, we will finally see whether he is going to like bathtime or not (just when we had made it through a sponge bath with no crying!).

He did have to get a shot today- first time he had been poked since the day we were discharged from the hospital- let's just say he still isn't very fond of needles!

We go next Monday to the neurosurgeon. Looking forward to that visit. Anxious for them to see all of the things he is doing...wondering what they will think about it, and when they will schedule a follow up MRI to see what's going on.

I go back to the dr tomorrow for my 6 week check-up. Looking forward to getting released to get some exercise! Hoping the incision is healed right and that Doogie Howser knew what he was doing. Ha!

A Few Funnies, Part 2

Anderson was 5 days old before his 2 big sisters got to see and hold him. But on the Sunday that we were in the NICU room where we could stay in his room with him, my mom brought the girls up to spend some time with us.

The entire day was both funny and exhausting all at the same time. The girls had already waited 9 months for their brother...now 5 more days- they were tired of waiting. Let's just say they couldn't get enough of him. All of the cords and monitors didn't bother them at all- they were going to hold their baby brother- and weren't planning on sharing him with any one else. Protective doesn't even come close to describing how they felt about him. We would convince Kinsley to let someone else hold him, and in 2 minutes she would inform them that it was her turn again.

The best part came. however, when Karlie was holding him.

She was "rocking" him, rubbing on him, and wouldn't take her eyes off of him. She would ask a lot of questions about him, like she was studying him very intently. While she was holding him, he got hungry. So like all babies do, he started to put his hands up by his mouth.

So she asked, "What is he doing?"

Jamie told her, "He is hungry. He is trying to eat his hands."

Her eyes got as wide as saucers, she thought for a minute, and then said, "Well, then somebody better run downstairs to McDonalds and get him something to eat, FAST!"

A Few Funnies, Part 1

Now that things have calmed down a little and Anderson is doing great, I just had to share a few stories from our experience at the hospital that are quite comical.

We will start today with Part 1- The Staples

So, since I had a C-section, I stayed in the hospital for 3 days after delivery. On the day of discharge, the doctors decided that my staples were NOT ready to come out. So, they told me that since the baby was still in the hospital, to come back to Labor and Delivery in 3 days and have my staples removed. Easy enough, right?


Once Anderson had been moved to the Children's Hospital on Monday afternoon, I decided I better go get them out. I walk back over to the regular hospital and go to Labor and Delivery and explain what I need done. The girl looks at me like I have 3 horns growing out of my head and says "We don't do that here."

"Okay...then where do you suggest I go to get this done?"

"Go back over to the nurses station where you recovered and tell them what you need."

I walk over there, tell the same story, while this time about 5 nurses look at me like I'm crazy. They tell me that will call the doctor that discharged me and see what I need to do. Could I please go sit in the waiting room? Sure. I haven't done enough sitting and waiting yet. I would LOVE to do that.

So I sit...for about 30 minutes. While I'm sitting there I remember that these directions for my staples to be removed are actually written in my discharge orders...so I walk back to the nurses desk and tell them that if they will just pull up my orders in the computer they will see that I am not out of my mind. The nurse looks at me and says, " Oh yeah...I forgot you were in the waiting room. I got busy doing something else. I will call for someone to come get those out for you."

I ask, "Do you know how long it will be? My baby has just been moved over to Children's to get ready for surgery tomorrow and I'd rather not spend all night over here waiting to get these taken out..."

She now shows some signs of compassion and picks up the phone and says it will only be a minute. But sends me back to the waiting room.

About 10 minutes later, a nurse comes to get me. We walk back up the hallway, and as we come around the corner she points to the person who has been given the task of removing the staples...I have 2 words for you:

Doogie Howser

Remember that show? Where there is a 16 year old doctor? Well, when she points to the appointed person, I see a 26 year old male standing there.

Well, this is a little uncomfortable...(he has the same look on his face.)

But I decide that these staples MUST come out, so I need to put my comfort aside and let this boy, I mean guy, do his job.

So we walk to a small room that is only big enough for an exam table and a few cabinets full of medical supplies. I decide to try to have conversation to ease the silent tension that is filling the room as he begins to remove the staples.

"So, are you a nurse?"

"No. I'm a medical student." (greeeeaaaat!)

"Really? What year are you?"

"I'm in my third year."

"Going into Obstetrics?"

"No...(are you ready for this?)...Opthamology."

"Opthamology? Really? Like an eye doctor? So what brings you over here to the OB/GYN floor?"

"During your 3rd year of medical school, you have to rotate through many different specialties. I am doing OB right now."

okay, so maybe he's been doing this for a month or so and at least has a clue what he's doing.....

He continues, "I got to see my first C-section this morning. Man, I had no idea that they keep you guys awake for those things. It was pretty awesome."

or maybe he doesn't...

Don't worry...this gets even better.

He gets to the last 3 staples and says, "I'm not sure if these are ready to come out or not." Then he shrugs his shoulders, and says, "Ah, we'll go ahead and take them out and just put some steri-strips on them."

Yeah, no biggie, right? Just my insides might fall out or I may get a serious infection.

So he takes them out. And then says, "Oooh. They are oozing pretty good. Better hold some pressure on this area for awhile." (Awkward? Noooooooo....)

Finally he is ready to cut the steri-strips to put on there, only he can't find any scissors in the room. So he tells me he will be right back, he's going to find some- and he leaves.

I hear him knock like all doctors do before entering a room. This knock is followed by the door handle jiggling, and him pushing against the door- that won't open. Yes, my friends, Doogie Howser has just locked himself out of the room and does not have the key.

I hear other nurses in the hallway cackling as he asks, "Does this door lock automatically?"

Yes, genius. It does.

I'm laying on the exam table wondering if I should get up and open the door for him, but decide to just lay there. So he goes back to the nurses desk to ask someone for a key to let him back in.

When he comes back in, he is even more embarrassed and things are MUCH more awkward. He puts the steri-strips on in record time and sends me on my way.

Wow. Did that just happen? Yes, it did. Jamie seemed to think it was hilarious when I made it back to Anderson's room...at the time, I did NOT think it was that funny. But now that I think back, I realize it actually is quite comical. Seriously, none of this was exaggerated or made up...that is EXACTLY how it happened.

Only me...Only me.

More answered prayers

Our pediatrician called today to tell us that she had gotten the results of Anderson's chromosome testing. Those of you who have been praying and following this story won't be surprised to hear...

it was all NORMAL!!!

You see, when a baby is born without a Corpus Callosum, there usually are other disorders, abnormalities, and problems associated with it. Chromosomal abnormalities or deletions can be the cause of the CC missing, or can show that other things are involved- and with the chromosome problems, the symptoms are on the more severe end of the spectrum. This is why they did the test on Anderson when he was born- the chromosome test can give more information as to what is going on-before symptoms arise. BUT...since his is normal and nothing showed up out of the ordinary, this confirms that there are no other disorders to go along with it.

In fact, as I read back over his medical notes from Vanderbilt, I realized that even though they have diagnosed him with ACC (Agenesis of the CC), they aren't sure themselves whether it is there or not...the large cyst made it difficult for many things to be seen, so they made the diagnosis based on the appearance of other things in his brain that tend to go along with ACC. So we really don't know what all is going on- what is there, what isn't there- and we probably won't know until they do another MRI...which hasn't even been scheduled.

For me, it doesn't really matter. He is doing so good right now and so far all of the information we are getting is so positive and reassuring. That's all that matters to me. All Jamie and I have ever wanted through this is for Anderson to be able to live a life with some type of "normalcy". Once he had his surgery and we were able to come home, he has not been any different than when the girls were babies. He eats, sleeps, dirties diapers, and when he is awake he is alert and takes it all in. He loves to be sung to, and when you talk to him he is already trying very hard to "talk back"...he hasn't really gotten any sound out yet, but boy does he try! He is a sweet baby who has already blessed our family tremendously and has shown God's power to many people. We are thankful for everything we have received so far, and continue to thank God for everything he has already done and will continue to do.

Doing Great

Anderson went back to his pediatrician this morning to recheck his weight. He is now up to 8lb 9 oz, which is 2 oz heavier than his original birth weight!! Yippee! Gaining weight is good for any baby, but it is especially so with Anderson- because feeding is actually a neurological activity. Many babies who have developmental issues neurologically cannot feed and have to be fed through a feeding tube. However, Anderson is doing great drinking his bottle and is continuing to gain weight each day. I am so thankful for this!

We also got other good news today at his visit- his doctor examined him and then looked at me and said "Honestly, Andrea. If I didn't know his story and couldn't see the scar on his head from his surgery, I would not know that there had been any concerns with his health. He looks great developmentally and is doing everything a "typical" 3 week old baby should be doing. He might just be God's little miracle baby."

You have no idea how wonderful it was to hear that. I knew that Jamie and I had not noticed anything different about him than our other girls as babies, but we also knew we weren't doctors and might be overlooking something. We are so thankful that Anderson is doing so well. We continue to pray daily for his development. We feel God has already blessed him and will continue to bless him. Thank you for helping us pray...God has already answered many prayers.

Could not ask for more

I thought I'd update with a few pics to show you how well Anderson is doing. Jamie and I feel blessed beyond measure, and we know that God is present and answering prayers every day. Anderson is already doing things that make us look at each other with amazement. We already feel that he is going to do way more than any of the doctors think he will do.

He is a good eater. His weight was up to 7lb 14 oz this past Monday, which was up 6 oz. from just the Friday before. We will go back next Monday just to be sure he is continuing to gain- hopefully he will be back up to his birth weight of 8lb 7oz.

He is a great sleeper! He sleeps anywhere from 3 to 3 1/2 hours at a time and 2 nights in a row he has gone 5 hours between feedings at night. I am loving this and hoping it doesn't change- unless it's for the better!

He HATES bath time! We are still having to do sponge baths because of his incisions from the surgery as well as the fact that stupid belly button still hasn't fallen off! That thing is annoying! He screams his way through his bath but as soon as I wrap him up and pick him up, he is perfectly calm and relaxed.

His big(gest) sister still thinks the world of him and stays pretty close to his side. The newness has worn off some, but both sisters still think he is pretty special.

Here are some pics from his surgery. The incision on his head is where the shunt and valve are placed. You can see where whoever shaved his hair for the surgery got a little "razor-happy". But the incision is about 3 cm long and at the base of his head where it meets his neck, you can see what looks like a knot- which is actually the valve piece of the shunt under his skin. Once he regrows his hair, you won't be able to see any of it. He also has an incision on his abdomen right above his belly button. This is where they cut to pull the shunt piping down into his abdomen to allow the fluid to drain.

It has been frustrating not being able to get him out, or to be able to have many visitors. We are anxious to be able to get him out so that all of you who have been praying for him can see him in person and be amazed at what he is already capable of doing. But we also understand the seriousness of getting an infected shunt, so we are following doctor's orders. Until then, I guess the pictures will have to do. Thanks again for the continued prayers and support. Things are going so well right now, we could not ask for more.

Settling In

Just wanted to do a quick update. Anderson is doing great. He seems to be getting adjusted to being home. The girls are so excited and very helpful (kind of). I'm wondering when the new will wear off because right now they can't get enough of him. They are in his face, trying to shove his passy in his mouth everytime he makes a little noise. Whew. He does seem to be taking it well so far and not getting bothered too badly. We'll see how long that lasts!

He went for his first visit with his Pediatrician today. Everything looks good right now. He hasn't gained weight yet, but they feel that the loss of fluid and the surgery are probably contributing to that. We will go back at the beginning of next week to see if he gains weight. He is eating really good, so hopefully when we go back his weight will be higher.

We are getting adjusted to having a new baby. So far it has gone well, but Jamie has to go back to work on Monday so we'll see how well I do next week...Wish me luck!

HOME!

Yes, you read that correctly...we are HOME. We had no idea that there was even a possibility of us going home today. But when the doctors made their rounds this morning at 11, it was decided that Anderson was doing so well, there wasn't anything they could do for him at the hospital that we couldn't do at home.

So we loaded up, got the paperwork, and headed home.

The doctors did ask that we be very careful about trying to ensure that his shunt doesn't get infected. An infection in a shunt is a pretty serious thing, so the doctors have asked that we do a lot of hand washing, hand sanitizing, and try to limit Anderson's exposure to a lot of visitors. They would like for us to try to keep him away from germs as much as possible. I know that you all understand and want what is best for him also.

So, we are going to get settled in. I am going to prop my swollen feet up and snuggle with the girls- who are excited to have their baby brother, momma, and daddy home. We thank you again for your prayers and support. We will continue to keep you posted of how Anderson is doing, but as for today God has answered all of our prayers and we are grateful beyond measure.

At a loss for words...

This is Jamie. What an amazing journey this has been, and it has only just begun!

I want to express my sincere appreciation for the prayers, calls, comments, and text messages we have received. I am humbled and to be honest at a loss for words. I do not feel adequate nor deserving to be blessed with a beautiful healthy family. God is truly in control and knows our every need!

From the time Anderson was born, I have read all the comments on this blog as well as the comments on Andrea's Facebook. There has not been a day go by that I wasn't moved to tears. Tears of joy, sadness, and love.

I am amazed at the support we have received since we were first told about the condition. You guys have stood beside us through this journey and it is my hope you will continue. Your beautiful comments, encouraging words, and most of all your prayers to our GREAT GOD has been so powerful!

We could not have asked for today to have gone any better. I am anxious to get home and spend time with our beautiful girls. Can't wait to see what God has in store for Anderson. All praise and glory be to our God!- Jamie

Of couse I have to add my two cents worth...

Just as Jamie said, we are completely humbled by the love, support, and prayers that we are receiving from so many people. The past week has been full of ups and downs, but just being able to log on and read the comments on the blog and facebook always lifted our spirits. We knew that with that many prayers going up on Anderson't behalf, things were going to be okay.

I am so glad that I have been able to share this experience...when we first found out that something wasn't right on the 20 week ultrasound, I really debated on whether or not to share it with everyone. No one ever wants to hear that something is wrong with their baby- so the first reaction is to try to keep it quiet so that no one will know. But something told me that I needed to share it so that the few friends and family that we had who read the blog could pray for the baby. As I sit here tonight, I know that was the best decision ever. We absolutely could not have made it through this pregnancy or through the events of the past week without each one of you by our side throughout the journey. And this journey is not over. In fact, it is just beginning.

One thing that I want to ask from each of you. Jamie and I are determined that we are not going to "label" Anderson with any type of disability or say that he "can't" or "won't" be able to do certain things. We are going to allow him to prove to both us and the doctors just exactly what he CAN do. We don't want him treated differently than any other baby. We don't want special attention. What we do ask is for your continued prayers, continued support as we know we will face challenges, and continued understanding. We are going to take one day at a time. That's all we can do. We refuse to sit and worry about the future. What we will do is get all of the help and support that we can for Anderson and work with him to make sure we give him every opportunity to have a wonderful life.

So far tonight, Anderson is doing great. He has been able to drink 2 bottles since surgery and is scheduled for his 3rd at 11pm. They weren't sure if he would be able to drink at all, so this progress is wonderful! Right now he is resting peacefully, but they are having to keep him on medicine because they said he will have some pretty bad headaches for awhile from the release of the pressure on the brain. So tonight we pray for a restful, painless night for him. We pray that tomorrow will bring more progress and that we will hear the words "going home" in the near future. Thanks again...we will never be able to thank each of you enough. God is great and he has proven his healing power once again today.- Andrea

Surgery is Finished!

Dr. Tulipan just came out and told us that the surgery is finished and that everything went just as planned- no problems. They are waking him up and as soon as he gets to recovery they will come get us. Thank you for your prayers. We are relieved that the procedure is complete---now on to recovery.

Update

Anderson has been taken back to surgery. The anesthesia team took him back around 10:20. Once he is sedated and has his breathing tube in, the procedure should take about 30 minutes. We will keep you posted. Please continue praying.

Feelings

As I type this, Anderson is sleeping peacefully. We are being as quiet as possible so we don't wake him because he is HUNGRY and can't have anything to eat. His surgery was originally scheduled for 9:30 but we have already been bumped to 11:30. I know it's a good thing that he is not considered an "emergency" case, but I hope someone takes into consideration that he is only a week old and doesn't understand why he can't have a bottle. (maybe that is just the mommy in me!)

Jamie and I were able to get a sleep room at the hospital last night which consists of a twin bed and a reclining chair. At least it had a shower in the room, which meant more to me than a comfortable bed because right now sleeping is not something I do much of- too hard to get comfy after the c-section and too much on my mind. A good hot shower is absolutely necessary, though.

So the big question is "How are we feeling?" This morning I have lots of different emotions going on (and the post-pregnancy hormones aren't helping much.)

My first emotion is sadness- It breaks my heart to see this little fella get poked, prodded, have IVs started, blow veins, do more IVs, wear a mask so that he can be under the billiruben lights, and know that he will be intubated for his surgery. One 1 week old today and it has been a rough start for him.

I also have a little bit of worry- I know that I shouldn't worry, but I can't help it. As a mother it is hard to know that your precious newborn will soon be put to sleep, intubated, and have a tube put through his skull to drain fluid from around his brain. The tube goes from his head down into his abdomen where the fluid will then be naturally absorbed by his body. Even though I know God is in control, I can't help but worry about him during the procedure.

I also can feel God's presence this morning. I know that he is with us and he is in control of the situation. It is completely overwhelming to know how many people are sending up prayers on his behalf. We have even had complete strangers sending us messages letting us know that they are praying for him. Jamie and I keep reminding ourselves daily that God has a plan. He sent Anderson into this world for a purpose...we don't know exactly what God has in store for him or our family, but we trust him.

Finally, I do have a sense of uncertainty. Even after the surgery we will not have any answers to how Anderson will respond to the surgery, whether it helped, or what his prognosis for the future will be. Basically, no one (except one person) knows what type of life Anderson will be able to lead. He may have some serious delays, or he may be completely fine. None of the doctors know exactly what the future holds in store for him- and we won't until he shows us what he is able to do.

Anderson is starting to wake up and try to eat his hands, so I am off for now to try to keep him as peaceful as possible. I will have someone in our family update the blog as information becomes available. Thank you for the prayers...please keep them going up all day today.

Update

Jamie and I have just finished speaking with Dr. Tulipan's nurse practitioner. The neuro team has decided that it is best for Anderson to get a shunt placed in the morning. We have stepped out of his room right now, as they draw his pre-op bloodwork as well as get an IV started. We have still not been moved to Children's hospital, but should be doing that in the next hour or so from the latest we were told.

We are okay- scared for our 6 day old baby to undergo surgery, but we also know that he is being cared for by the top-notch neurosurgeons and we know how many people out there are lifting him up in prayer. God will take care of him during his surgery. We know this is what is best. We still don't have any idea of his prognosis for the future, and we probably won't. But, the surgeons do feel that he will tolerate the procedure well and if he does good feeding then he could go home the next day...we will see.

So that is the latest. Please pray for the team of surgeons and pray that Anderson will tolerate the procedure well and that this will help him.

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.