Halloween 2011

We just entered the girls in a Halloween Costume Contest for our local newspaper. The winner gets a gift certificate to the place where we have our vehicle serviced. If you have a minute, please register and vote for Gwen the chef  and Samantha Grace the crab! It would be wonderful to have a few free oil changes since we run the roads for doctors appointments so often. Thanks so much for all your support!
http://mtairynews.upickem.net/engine/Details.aspx?p=A&c=40323&s=12527299&i=1&m=X#SD

October 27, 2011

We are SOOOOO happy! The cyst had stayed the same. If you look at the MRI images from August, September and the one today side by side the cyst has not changed all that much from August. It is large but it is showing no signs of creating pressure in the brain at this time. Her head had grown some but the cyst had stayed the same! I asked them what were the chances of doing surgery on it in the future and they said if it stays like this no surgery will be needed! Thanks so much for your prayers.... God was listening and He gets the glory for all of this! It was nice to have a little peace in my heart tonight! Just to hold my sweet girl without the worry..... BLESSINGS!!! We will go back in January for another MRI to check to see how the cyst looks then. Until then, life goes back to normal~ or the new idea of normal anyway! WHOOOO HOOO!

October 26, 2011

Whenever I am afraid, I will trust in You. (Psalm 56:3 NKJV)

So tomorrow afternoon is Samantha's next MRI and Neurosurgery visit. Just over three weeks ago was her last MRI which showed that her cyst had grown. This will be her 5th MRI since her last surgery in August. A good friend of mine told me to try to enjoy the time with Samantha without worrying. I have really tried to do this but as the days grow closer to the scan it has gotten harder. When I measured her head tonight I could see a difference from the last time about a week ago. Overall she is doing well, it just makes me sick to my stomach to think about her having to go through surgery once again. The cyst is large enough that something will have to be done with it at some point and I have a feeling that her doctor will tell us tomorrow that it will be soon. Please know that these thoughts are not from a lack of trust that God can fix it. I believe that God has already worked miracles in Samantha, but I also know that God places us in situations for His purpose. "To everything there is a season, A time for every purpose under heaven: (Ecclesiastes 3:1 NKJV)" Even though I am worried about what tomorrow holds, I hold tight to God's love and the fact that his plan is PERFECT! I think so often these days about just how blessed we are. If Sam would have been born before the 50's she would be fighting for her life right now because shunts were designed in the 50's. So we are so blessed to be living in a time with modern technology. We are also blessed to live in an area with an amazing pediatric neurosurgeon less than an hour away. We also have an amazing group of people who we are blessed to have take care of Sam at the hospital. God has also blessed us with such amazing friends and family! Your support and prayers have gotten us through some really hard times. One year ago tomorrow was when my gallbladder was taken out and my health started improving. It is also the start of us finding out about the situation with Samantha. It is amazing to think where we have come in a year. I will post tomorrow night when we find out more about the cyst from the scans. Here is some videos of Sam from tonight. She was very please with herself because she learned to make bubbles. She also started saying dada last week! Even though it is a huge milestone, it is a sore subject at our house because a certain someone likes to rub it in!! Thanks for any prayers you can send our way tomorrow!!!



September 30th- 6 MONTHS OLD!!!

The last week has been a one day at a time week. I have had such a feeling of just being overwhelmed. Knowing that the fluid has increased and the possibility of another surgery has weighed on not only my heart but Travis' and Gwen's as well. Last night as I was watching TV, I held Sammie Grace while she was sleeping and a rush of peace entered my soul. I know it was from God. When I woke up this morning the first thought that entered my mind was that Sammie is 6 months. It was so strange because I had been so busy this week that I had not even thought about it. It has been half of a year of loving a sweet little baby! Gwen also reminded me this week that October reminds her of me being sick. It is such a praise that I am able to enjoy one of my favorite seasons this year. I remember looking out the window of my bedroom last year seeing the leaves change. It was like the movies when they are trying to show you how time has passed by. Today I have been filled with joy. I think God knew I needed it. I am so joyful that my sweet daughter is here with us and we can celebrate her being 6 months old. I am so joyful for my health! Gwen memorized all of Psalm 23 this week for Awana. I think that God wanted me to remember that we don't have to be afraid because He is always with us!



September 23, 2011

Wait on the LORD; Be of good courage,

And He shall strengthen your heart; Wait, I say, on the LORD!

~ Psalm 27:14

We had a visit with the neurosurgeon yesterday at 2:30. I worked in the morning and had a little bit of time with Sam before her appointment. It was so good to have some time with her since I missed her this weekend when Gwendolyn and I went to Florida. I also enjoyed having some alone time with Gwendolyn. She has been such an amazing kid through all the things our family has gone through in the past year. At her appointment Sam's head was measuring a little larger than just two weeks ago. When we had gone in August it had jumped from the middle line on the chart to completely off the charts. At the last visit it had made it back down to the second highest line and this visit it was charted on the top line. Because of this and the fact she is still having some slight other indicators things could be wrong they decided to have an MRI to check the cyst. On the last MRI that was done, the cyst takes up about 1/3 of the photo of her brain when looking down from the top of her head. They wanted it done soon and since I live about 45 minutes from the hospital they added her in for a scan at 9 o'clock last night. They weren't able to get her back until about 10:15. The good thing is that her scan only takes about 10-15 minutes. We were able to finally get home shortly after 11:00. It just made for a long day when I had not planned on it taking us so long down there. This morning Travis and I were on pins and needles waiting for our doctor to call with the results. Since our main neurosurgeon was in surgery today, we were able to talk to the PA and she let us know that the cyst had grown from last time but it didn't seem to be causing pressure. She was going to talk to our doctor and see what he wanted to do. After our main doctor looked at the scans he decided to wait for a month and have another MRI. Then we will see him right after the scan. I am relieved that we are not looking at surgery at this time but I still feel the stress of the possibility. This is why I added the verse above. It is a verse that I read the other night and something made me read it over and over to myself a few times. I now know that something was God. It came to me when I was finally able to take a minute this afternoon to just sit and process it for a minute. Although I am so tired of all of this, I know down deep that it is okay because He is with me. I have to just praise Him for all my blessings. My two precious girls and my wonderful husband! All my friends and family who have stood by me through all that we have been through. And so many others who I might not even know who continue to pray for our Samantha. Not every moment of every day I am strong, but when I am weak He is there to provide me strength. "God does not take away trials or carry us over them, but strengthens us through them." ~ Edward B. Pusey

September 13th- 5 1/2 months

I am just tired. I have actually written a post in the last two weeks but I didn't publish it because it was kind of a "stressed out" post. I have found that sometimes it is just therapeutic for me just to get it all down. However, my sweet McKeaver girls told me that they check my blog most days for an update so I thought I would share a little bit about what is going on.
-A little over a week ago Sam had a check up with Neurosurgery. It was not necessarily a bad check up, but it was one that had me thinking. Because Sam needed the second shunt and because of the cyst that came up when the pressure in the fourth ventricle was relieved, they now consider Sam to have Complex Hydrocephalus. It really just puts her in a different category of hydrocephalus. We talked about watching her head measurements daily and the possibility of the cyst growing larger in the future that could lead to surgery.  I asked if it was possible that another pocket of fluid (cyst) could appear at that time and the answer was yes. She said that there was actually a patient that this happened to and he had over 20 surgeries until the fluid stopped causing problems. I guess I am having a hard time relaxing about the whole situation because the last time I did, I felt like the rug was pulled out from under me when we went back into surgery. We also talked about the stiffness in Samantha's muscles and the possibility of a diagnosis down the road of cerebral palsy. She did explain that there is a wide range of CP. Some kids you might not even recognize as having it once they finally reach milestones. I guess it was just more stuff to think about.
-Last week we finally had her physical therapy set up again and had another evaluation done. The good news was that she scored in the normal range. The main impairments that she saw this far were her body's range of motion, flexibility and head control. The blessing is that we are starting Sam early and this will help us work with her to overcome obstacles faster than if she was not receiving these services.
-Last week we also found out that my maternal grandmother passed away. Even though it was a blessing that she is not suffering anymore, she was an important part of my life and she will be missed. It also means that I need to travel for her memorial service. Because it is out of state, we have decided that Gwendolyn and I will travel to the memorial service, while Sam will stay here with Travis. We just feel that she needs to stay close to the hospital just in case. I am VERY anxious about leaving her for the first time ever! I know she is in good hands with Travis- but it still is weighing heavily on me right now.
I guess overall I feel very burdened with worry lately. Every time she shows any kind of odd behavior at all I start to check her from head to toe- Measuring her head, checking her fontanel, checking her temperature. The thing about it is that it could be so many different things not even related to the fluid. It is not a worry that we can't make it through, it is a worry that I might miss something somewhere. I don't want her to be in pain or to have CSF pressure on her brain that might cause any kind of damage. I have really tried hard to just give my worry to God but I guess I haven't been very good about it lately. I think that it is because we have had such major stress factors in our life for a long time now. It tends to wear on you after a while. Through this dark cloud of worry and stress there is a bright spot. It is God and the people he has sent us in support. I have been listening to the words of Matthew West's song Strong Enough for months now. Some days I have to sing it to myself several times so that I remember that His hands of mercy constantly cover me. Samantha has another check up next week so I will try to post more after that appointment. Thankful for the blessing of you all. Steph

August 21, 2011

So I could tell you that I'm just a tad bit stir crazy today even though I have been home more this time than last. Today I would really like to be home with all my family together. Maybe soon. So Fridsy's MRI was wonderful. The fluid in that cyst had actually reduced in size and I know that is because of God's healing hand and prayers from so many of you. It is still there and will be watched closely. So as far as Neurosurgery goes we could go home, the problem is that Sam started having seizures this week too. They are different from the seizures she had a few months ago so we didn't catch them at first. They have not done another EEG because all of the machines they had were in use over the weekend. Since they are not life threatening seizures they are trying to see how she does when her meds are increased. Overall Samantha is doing so much better than she was in the middle of last week. I am hopeful that we will get to come home tomorrow or in the next few days. We think the world of both her neurosurgeon and her neurologist because you can really tell that they care about our Sam. We are so blessed to get back on the 6th floor because the nursing staff is fantastic. We have never had a nurse didn't love!!! Thank you all so much for your continued support. The cyst being smaller was our first major blessing of the week but there was also another. When we had to bring Sam back Tuesday I was really stressed about missing days at work since I had just started back. I should have known that God would provide.... It turns out I still have several donated days from last year that I was able to use. I really wish I could thank everyone who donated any days to me last year! Your gift was a blessing that you just can't even imagine. If you happen to know someone who donated days, please hug them for me! I also wish I could hug and personally thank everyone who has said prayers on Sam's behalf. You really have made a difference in our lives! My Sunday School lesson that I taught today was on the word TRUST. The fact that we can trust God is so powerful and the fact that He sends us people to pray, comfort and support us through troubled times is truly LOVE. That is the exact reason why people should find a church body to belong to. God knows we are stronger in numbers.  He must rejoice to see His people support each other and praise His name. So very thankful for all of your support! Love, Steph

This was Sam after her second shunt was placed last week. :(

Gwen couldn't stand it any longer!

We let her get in her hospital bed so they could watch TV together!

August 16, 2011

So Sam kept getting worse instead of better. We finally brought her into the Emergency Department last night around midnight. We had called the neurosurgeon on call for the last three nights. Since she was over 72 hours out of surgery and still having problems they had us come on  in. She had not eaten since 1 pm on Monday afternoon with a projectile vomiting episode Monday evening. I had posted on facebook a few weeks ago about shots being one of the worst things for a baby. I take that back... finding an IV on a baby beats that hands down. They finally got an IV in, repeated the chest x-ray and also another MRI. Then another projectile vomiting episode when they tried to give her meds. This time I was the target. (Would be the target for that sweet child any day!) This poor baby has been tortured! Once all this was done around 4 am we started to get some news. There seems to be another pocket of fluid that is in a different location from the areas of the two other shunts. The thing that was concerning was that from Saturday until now that pocket of fluid has increased. Her symptoms are most likely cause by some kind of neurological situation but we are unsure of the exact cause. It could be that her brain is trying to get use to having the second shunt in and this will all blow over in the next few days. It could also be that this new pocket of fluid is growing now that there is room (created by getting rid of the pressure from the 4th ventricle shunt) and it will have to be drained as well. This is yet another brain surgery and the doctor will actually have to go cut through part of the brain to make a passage for the area to drain into one of the other shunt areas. When he came to talk to us tonight you could tell he was troubled by all of this. He said that in some children it seems like they get in these situations where they have these battles and stay in and out of the hospital for long periods of time. It is just so hard to believe that just over a week ago I was going for a check-up with Sam and now we are deep into surgery and trouble. The thing that breaks my heart the most is the amount of pain she has been in the last few days. Most of the last few days she has whimpered, trying to get to sleep with little rest. She has just been miserable. I have not seen that sweet, happy smile out of her in days. This afternoon her IV needed to be changed because it blew up her leg with pressure. They had the transport crew in there from almost 2 hours and they could not get an IV started on her. Please pray that she feels better and that no other surgeries will be needed. If they are, please pray that God will guide the hands of the surgeons and that He will heal Sam's head. So many times when we are in the pits of life we can't understand why we are there..... Sometimes we are not even aware of the purpose years after the troubles are gone. The good news is that God is bigger than all of this and He knows why. I rest in His arms knowing that His plan is perfect. Your prayers cover our family daily, but most of all our sweet Sam. God has special plans for that sweet child!

August 14, 2011

Sam's scans were good and we were able to come home yesterday. She was still in pain so they sent her home with pain meds. She slept most of yesterday which was good. Last night when she woke up she was more like herself until she had a sudden scream of pain and got really upset. When she gets upset her whole head turns red and I am sure the pressure builds up and it makes those shunts work. Well her incision sites started to show a small amount of fresh blood after that. We of course called the hospital and the doctor on call told us that might not be anything, like we thought, and just to watch her. She settled down quickly and went to sleep shortly after that. I woke her up to feed her once her pain meds were due and she ate a little again with not tons of signs of pain. Then when the next feeding and dose of pain meds were due, she woke up crying when I was changing her diaper I noticed she was warm. Travis took her temp and she had a low grade fever. We changed her clothes to another outfit while feeding her and it did come down. Not sure if she had just gotten too hot in the other outfit while sleeping or the pain meds started to work. She has not been eating great. She has only had about 3/4 to 1/2 of what she normally eats and she goes a longer time in between feedings than normal. All of this could be the way she is healing but it puts us on edge because we have been down the road of shunt infections before and it is not a road we want to travel again. Please say an extra prayer that everything is okay and she will be feeling better soon. Thanks so much. Steph

August 12, 2011

Sam made it through surgery and they were able to get the shunt placed. PRAISE GOD!!!!! She has been very upset since the surgery because of pain but we finally were able to get her settled down and she has been sleeping. She is still very swollen and it is hard to hold her because of where the surgery was on the back of her head. I felt like if I moved the slightest bit I was touching a tender spot for her. Tomorrow she will go for another MRI and a shunt series to make sure everything is working okay. I feel so blessed for the amazing doctors that worked on her today! I feel so blessed for the wonderful nursing staff on the 6th floor who make us feel like family! I feel so blessed for all our friends and family who have prayed, visited and posted messages of support today! Sam even had a special prayer group on the DES playground during 1st grade playtime. I am sure God was smiling down on those special little prayer warriors! Most of all I am blessed by an amazing God who placed all these people in our lives, blessed us way beyond what we deserved and sent His Son to come to Earth to die on the cross for my sins! Seeing Sam in pain today broke my heart.... I simply can't even begin to imagine how God felt watching His Son at Calvary! So thankful she made it through today! So very thankful! Love you all..... Steph

August 11, 2011

I have been on such an emotional roller coaster today. We had an appointment for an MRI for Samantha at 12:45 today. As soon as the tech brought her back to us Travis asked if she was able to tell us anything and she said no but her body language told us so much. Then when we got to the office to see our neurosurgeon we didn't even wait 2 minutes before we were called back. They came in right away and told us that she needed a second shunt in her 4th ventricle and it needed to be soon. She showed us the scans from the beginning of May until now and there was a huge amount of fluid that is causing her head to grow and pushing on her cerebellum. She told us that she was surprised that she was not showing more symptoms for how much fluid was there. So when her main doctor came in we decided to have the surgery tomorrow. We are not completely sure of a time yet but right now it is around noon with us being at the hospital around 11 am. If all goes well we would be able to come home on Saturday. It was just this Monday when we went to visit the nurses on the 6th floor and one of them joked about Samantha's room being open. I never thought we would be back on that unit within the week. I was watching this video tonight on the day she was born and it is amazing to see the pressure on her head before the first shunt was placed.

This was one of many videos that Travis made so that I could see her better since I could not be with her much on that first day. It is amazing to me just how much her head changed 24 hours later after the first shunt was placed. Tonight I have noticed somethings that were small signs of all this taking place. She isn't focusing on things as long or as much as she was a week or two ago. She has been extremely fussy today and can't get more than 30 minutes rest at a time. She has started to startle easily again like she did when she was just a few days/weeks old. We had put her on medicine for reflux but the doctors think now that that was just from the pressure in the 4th ventricle and that she most likely will not need it after this surgery. All in all it is a wonderful thing that they were able to catch this and we are able to get it fixed. The bad thing is that she will have two shunts now leading down into her stomach. This means more chance of infection or shunt malfunctions. This is also a more dangerous surgery to do because of where it is located. All day when I have started to cry I have had to tell myself... Look how far God has brought her. She is a miracle. Look how far God has brought me. He is a miracle worker! Your prayers and support have been simply indescribable! You are amazing people and I am so blessed to have you all in my life. Please pray that there are no complications during surgery tomorrow. Also that this shunt will work successfully and that there will be no chance of infection for either shunt. If one shunt gets infected, both would have to come out and it would be another 3 week or more hospital stay with an external drain until the infection cleared up. God knows what He is doing and I am so glad He is in control. I am a mess- wouldn't even know where to begin if it were all up to me! I will try to update tomorrow. Love, Stephanie

August 8, 2011

So I had planned all morning to post tonight because we had a neurosurgery check-up today for Samantha's shunt. Thinking that our little family has finally gotten into a routine, life was feeling like it was starting to get back to the basics. I was so happy when we didn't even have to wait 5 minutes for our appointment today because I had a few things to do in Winston before we headed back to attend Open House for Gwen. The PA came in and we were almost finished  but the last thing she checked was the measurement of Sam's head. It was when she rechecked it and charted it on the computer that I felt like I had been hit by a truck. It seems that Sam's head is larger than is should be based on where it had been and her weight/length now. She had a line graph up on the computer and the little black dot was well above where it should have been. When she looked back at earlier scans she saw the 4th ventricle and the fluid that was there. So she wants Sam to have an MRI to see what might be causing her head to be larger than it should be. It seems that the current shunt is in place and working like it should since her soft spot is not showing signs of fluid build up and she is not showing signs of being in pain. It could be several different things... It could be that this is just the way her head has grown and the size will level off very soon. It could be that there is fluid build up in another area of the brain. I am sure there are more possibilities but until we get the MRI we just don't have a clue. I guess my fear is that it is the 4th ventricle and she will need another shunt. She told me again today that putting a shunt in the 4th ventricle is a more dangerous surgery. They also tend to get infections and blockages more than the shunt she currently has. My heart just sank. The possibility of more surgeries this soon just tears my heart apart! She is not even 5 months old. Well we had an MRI scheduled for 4:00 this afternoon and then they called back and told us that we would have to change that because she will have to be sedated.  I think it is so ironic that just this morning before I left I was talking to a very dear friend of mine about how we need to watch when the devil is messing around in our lives. I am sure he had a good laugh today. Well he might have had a laugh today but I know who has the last laugh. God is still with us and He will get us through. Mother Teresa once said, "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." I am not sure if God is doing this because He trusts me but I do know how much He has molded me through this process. Please pray for our girl. Please pray that this is not what it could be and that it is just the way she is growing. Please help me praise God for what He has done in her life this far! I have two other quotes that have made a mark on me tonight. One is by W. Elliot- "Perseverance is not a long race. It is many short races one after another." I had felt like we were getting to the end of our very long journey and quickly realized today that Samantha's Journey is really many short races put together. The other quote is by Bill Cosby- "Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." I am so thankful that God has given me Travis as my personal comedian. Thank you for your prayers. My heart was so heavy tonight and I wasn't going to post but I know that your prayers have helped to get Samantha to where she is today. Love you all.... Stephanie

A Message from Sam

July 22, 2011- Almost 4 Months

Sorry it has taken me so long to post an update but keeping up with two kids in the summertime has kept me busy. I was never able to get to the nesting phase when I was pregnant with Samantha because of all the craziness and worry so I believe it has hit in the last few weeks as well. I have cleaned out every closet and drawer in the house. So life is good, God is amazing and I feel so blessed. Sam's last PT appointment went really well. She was really pleased with her progress and feels like she is hitting some great milestones. One of the things that impressed her the most was the fact that Sam is so aware of what is going on around her. She said that this is a great indicator that there is the start of cognitive function being on track. We are still working to relax the muscles in her legs daily and now we are working on here arms to help get her to a point where she can eventually lift her head while on her belly. We are currently trying to get here PT and OT worked out where they will come to the house to save us one more doctor visit in Winston. She had been a little restless the last few days, with a massive amount of drool, and chewing on anything she can... Yes we are working on teeth. Bless her heart! Her big sister has loved being home with her this summer and requests daily Sam time where she reads her books, they watch tv together or they do Gwen's activity of the day. The best part is being able to see the smile that comes across Sam's face when she is with her sister. It is priceless. One of the most exciting updates is that we are going to be doing Sam's Baby Dedication at Salem Baptist Church this Sunday, July 24th at the 10:55 service. Please know that we would love to have anyone who would like to join us in dedicating Sam to our Amazing God! You have all been so wonderful in this journey with our family and we can't even begin to thank you for everything. God has answered so many prayers through this precious child and we can't wait to give Him all the praise! As I am finishing my last week of summer, I look back to see that I have not worked since the middle of March. I also have to once again thank the many, many people who donated days so that I could be with Sam through her surgeries, hospitals stays, and maternity leave. I only wish I could thank each of you individually! Wishing everyone a happy last week of July 2011! Time sure does fly!

June 23rd- 12 Weeks Old

It is so hard to believe what we have been through and been blessed with in just 12 weeks. Today we met with Neurology. One thing that I had to learn the past few months is that there is the difference between neurology and the neurosurgery. We see neurosurgery for her shunt and neurology for her seizures. Yes, I am sure all of you medical people are now shaking your heads at me. I am slowly getting all of this stuff. Anyway, they decided to wait 4 months to do a second EEG. At that time we will talk about taking her off her seizure meds. The cause of the seizures she had is really unknown. We know what they look like. We know that it started in the left side of the brain with her right hand moving but we don't know the cause. It could have been the infection, in which case she would be able to get off meds eventually. It could have been the shunt and/or drain irritating the brain and it could also have been caused by the Dandy Walker Malformation. Only time will tell. When doing her check up the doctor had some concerns about her hearing. She passed two hearing tests in the NICU which was before the infection. Today she noticed that Sam was not responding to certain sounds. This was also something they looked at when she had her CDSA evaluation last week. The neurologist said that the infection could have caused some damage. So we will be having another screening soon to check to see if there is any damage. She  did seem very pleased with some of her social interactions like social smiling which was a good cognitive sign. Next on the appointment list is next weeks physical therapy appointment. The neurologist was glad that she is already receiving physical therapy because she keeps her legs stiff. We have been working on this everyday and I hope that the PT can see a difference since that last time we were there. Tomorrow we are going to try a very short visit to the pool. It will be Samantha's first pool visit. Praying it goes well!



Everyday is a blessing. I see God teaching me lessons through both of my girls everyday. I pray that I can continue to remember each day what a precious gift life is and how thankful I am for the people God put in my life. I also am thankful for the many people that God has sent me through this process! Some were close friends before this and through the past year He has shown me just how special they really are. Others He has placed in my life through this journey and I am so very thankful to now call them friends!

Sam still doesn't quite know what to do with her big sister!



June 10th- 10 Weeks Old

God is so very good! Last week was a busy week but it was worth it! We went to our first appointment on Tuesday which was Physical Therapy. The main problem she was seeing so far was that Sam keeps her legs stiff. She showed me exercises to do to help relax her legs and so far so good! We also had her 2 month shots on Thursday morning. Shots are horrible but her check up was good. She had gained about 3 pounds since she had gotten home from her last stay in the hospital. That afternoon we had an appointment with Neurosurgery and her doctor was very pleased with how she was healing from her last surgery. He also felt her head and thinks that the one shunt is working so well that she most likely will not need the second shunt!!! YEAH! It is so nice to go to the doctor and get good news. We have now been home 5 weeks and are starting to get in a groove. She is such a blessing. She has discovered her tongue and she smiles all the time. Gwen loves her so much. The first thing she does when she wakes up in the morning or gets home from school is to see Sam. I often find Gwen reading or singing to her if Sam is in her crib. It is a blessing to see the love between them already. I really think the sweetest thing is when Gwen pulls out her new Bible that she received at church for graduating Kindergarten and reads to Sam. Looking forward to spending the summer with my girls and feeling blessed beyond measure! I pray for a blessed and safe summer for all of you too!

May 28th- 8 Weeks Old



It had been a few weeks since the last post and Samantha Grace has been doing really well. We are now three weeks since her last surgery to put in the new shunt with no sign of infection. Her head is healing really well this time. The doctor said that most of the time you would see signs of infection or problems within two weeks of a shunt being placed! What a blessing it is to see that time come and go! If we can make it to two months our risk percentage goes down greatly. This week we have her 2 month shots, an appointment with physical therapy and an appointment with her neurosurgeon. I have so much peace in my heart right now about Samantha. Not sure what physical and medical obstacles we still might be facing down the road but God has shown me that we can make it through whatever comes our way. This week I was thinking back to the weeks and days before Sam was born. Travis and I were so nervous because our doctors on several occasions told us to plan for the worst. They told us that there was a chance she might not make it out of the delivery room. This week I finally took some of her baby items out of boxes and put them together. Travis and I had decided that we would keep them in boxes... just in case something happened. It brought tears to my eyes to think back on where we had been. I can't even begin to tell you what a blessing you all have been in our lives. I really believe that our Samantha is a true miracle and your prayers have made a difference in her life. I had made a video for my DES family a few weeks back and felt that I needed to share one with all of you. Your support has meant so much. Thank you for being a blessing....

May 13th- 6 Weeks Old

So we are just so very blessed. Samantha was able to get her new shunt placed last Friday. It was a little bit of a rocky road because her surgery got bumped for an emergency so she went without eating for over 10 hours. This was not fun for a little thing her size. She came through great and they were able to place the shunt in the same place as the first shunt. On Saturday morning she went for her shunt series scan and her MRI. They were going to let us come home Saturday but decided not to after seeing the MRI images. They knew she had some bleeding because blood had been coming out in her external drain but they saw more blood than they had expected to find. The main problem that this could cause is a failed shunt due to a blockage. The doctors also told us that she is at a higher risk of a shunt infection because she has already had one infection. A failed shunt or an infection usually show up one to two weeks after a shunt has been placed. So we are watching our little miracle like a hawk these days. They did tell us that if we can get past two months without problems our chances for infection and problems go way down. We were able to bring her home on Mother's Day... what a blessing that was and she has been doing great since. Gwen has really enjoyed having her back at home and is reading to her constantly. There has been so many times this week where I just have to smile. I think of where we have been and where God has taken us....BLESSINGS are all I can see. It is amazing to me that she is already 6 weeks old. I was listening to my iPod the other day and the song Don't Blink by Kenny Chesney came on....it really does go by quickly. We have an appointment with our neurosurgery doctor on Monday afternoon and an appointment with Physical Therapy at the end of the month. We will also be seeing a genetics and neurology (for the seizures) this summer. We are so very thankful for all the wonderful staff on the 6th floor Intermediate at Brenner Children's Hospital for three weeks of wonderful care. We also thank you all for your continued support, love and prayers. You are all so amazing! We are just asking Samantha's prayer army to say a prayer that this shunt has no problems so we don't have to go through this all over again anytime soon!



May 5th- 5 Weeks

Samantha Grace will be in surgery tomorrow morning around 10:45 to get a replacement shunt. Please say a prayer for her and her doctors. If all goes well we could be home as early as Saturday. So excited about bringing her home for the second time. The nurses, CNA's and the rest of the staff in Peds Intermediate have been so wonderful. Very blessed to have had such great care but I pray the only time we will see them in the future is just for visits when we have to come for doctor appointments! I had asked you all to say a prayer for Samantha's neighbor Carter. Please continue to say a prayer for him and his family. They were given the news today that the tests came back positive and the outlook is not good. My heart breaks for this family! Carter's smile would melt your heart! Hug your children.... remember you are blessed... and pray for miracles! Will try to update tomorrow....
Love you all-
Travis and Steph

May 4th- Almost 5 Weeks Old

So the word of the week is patience! We are just waiting and watching Samantha's cerebral spinal fluid that still has too much protein and red blood cells. Yesterday was the first day that we started to see an improvement in the color. It had changed from a dark cranberry to a light auburn. They are now testing the fluid every 3 days and once we get a test back that has all the levels right we will still have to have an unknown amount of time where everything is clear before another internal shunt is placed. So the length of our stay is still unknown. The things that are known would be that Samantha is doing great! She is eating like a champ, gripping fingers, tracking with her eyes.... exactly what she should be doing for her age. I know that we still have some time before we hit major milestones that Sam might struggle through but she is doing so much better than the doctors thought she might be doing at this point. Everyday... every moment with her is a true blessing and I can't praise God enough. God shows me signs of His presence daily at this hospital. Although you never want your children to be in pain in any way, I know that God has Samantha in this hospital, in this room, at this designated time  OKAY WHILE I WAS TYPING THIS THE DOCTOR JUST CAME IN AND SAID THAT EVEN THOUGH THE COLOR STILL LOOKS OFF A LITTLE THE TEST RESULTS ARE COMMING BACK GREAT AND SHE SHOULD BE GETTING ANOTHER INTERNAL SHUNT ON FRIDAY! I WAS GOING TO RETYPE THE POST BUT JUST FELT IT WAS ONE OF THOSE GOD MOMENTS THAT JUST AMAZES ME AND YOU NEEDED TO SEE WHAT I WAS TYPING WHEN I GOT THE NEWS! WE COULD HAVE HER HOME THIS WEEKEND! AMAZED....

April 26th- 27 Days Old

Well our sweet girl is doing better! By Easter Sunday they had taken her feeding tube out! Yesterday we had the EEG monitor off.... but bless her heart we still have a lot of glue from the 23 electrodes that were glued on her head. We are working on the glue but it is not being cooperating with us! They have her on a seizure medicine which she will be on for a while and they will do another EEG in about 2 months to compare to the one she had last week. So now she just has her external drain and her regular monitors. She is doing much better and seems more like herself the past two days however there is a large amount of blood that is draining with her cerebral spinal fluid. We really don't know why this is and our prayers right now are that this will start to clear up soon. Last Thursday was the first final negative culture so if the fluid will start to clear up, she could get a new internal shunt as soon as a week from Thursday. She has also been very grumpy today. We are not sure if it is because of pain in her head or her belly. She has been on a large amount of antibiotics for the past week so I am sure that is hard on such a small belly. Overall she is better today than she was a week ago... and that is a blessing. I see blessings daily. I ask for all of you special people who have kept Samantha in your prayers to pray for a little boy named Carter who is in the room next to us. He is 6 months old and the doctors are telling his family that he might only live to be 2 years old. I can't even image what I would do if I were being told that about Samantha but once again I know that miracles happen every day and doctors are left scratching their heads. God is still in the miracle business and God answers prayers everyday. I am asking anyone who will... please pray for this sweet child and his family. Hearing about situations like this I can't help but feel so blessed by the fact that Sam is doing as well as she is. Being here is very humbling and if you just open your eyes.... you can see blessings everywhere. Again.... We so love you and thanks for your prayers and support.

April 22nd- 23 Days Old

This week has continued to be a little crazy for our family. Since our last post, Sam's infection has gotten better with tons of aggressive antibiotics. The main problem has been that she has had a significant amount of seizure activity since yesterday. The first big seizure she had around noon was calmed down with Ativan. They then called in a Neurologist team to start keeping track of this and she ended up with an EEG to monitor her for seizure activity. She continued to have seizure activity throughout the night and the day today. After that first seizure on Tuesday morning, she has actually been on a medicine for seizures and that dose was increased throughout the night and day today. With all the extra medicine Sam has been very sleepy and not herself which has made her not eat like she was. This is the cause of the second problem.... lack of nutrition. She has got to eat in order to help her body fight the infection and get stronger. So they talked about placing a feeding tube today. Well at first I was okay with this without any reservation and then I thought back to my sick period in the beginning of my pregnancy that ended with a feeding tube. The feeding tube was the worst part. So I asked the doctors if I could get her to eat, could we hold off on the feeding tube. Well from 12 o'clock on she ate more than what she needed to eat every three hours. This happened until this last seizure at 9 o'clock tonight when she was in the middle of a seizure and it was time to eat. They actually had to give her meds to get her out of the seizure because of the length and that completely knocked her out. The doctors decided to add another seizure medication and this one will make her extremely sleepy. So the plan is to get her feeding tube put in around midnight tonight when it would have been time for her next feeding. The third problem we have been dealing with today is that her external drain has been leaking a large amount of cerebral spinal fluid throughout the day today. Her Neurosurgery Doctors have been watching and trying different things to get it to drain and not leak. The easiest way to fix this is to add a few stitches but a newborns skin is so fragile that it might not hold in the spot where there needs to be a stitch. They tried Dermabond but it didn't exactly hold. They lowered the pressure of the drain and that has helped some but not 100%. Tomorrow is another day and I once again pray that she will improve. All of this just helps to remind me of how strong my little Sam really is. Please continue to pray for our sweet girl. On this Easter weekend I am reminded just how WONDERFUL our God is! I know He can work miracles on Sam just like He did when He walked this earth. I was reminded by a dear friend the other day that it is not just the prayers that are said but the belief behind the prayers that God can fix anything. I BELIEVE HE CAN! Thank you for believing this with me!

April 19th- 20 Days Old

So the last few days of Samantha's Journey has been tough. We were finally able to come home from the hospital about 10 days ago and we only had a few minor problems until this past Saturday night. Travis had been on call and had worked most of the night on Friday and all day on Saturday so it was just the two girls home with me on Saturday night. I was feeding Sam and when I went to burp her I noticed that the side of her head where the shunt is was soaking wet. I first thought that she was just sweating on that side until her whole head dried up except from the shunt site behind her ear. As I was watching it I realized that her site was leaking clear fluid. After calling the doctors they told us to go to the ER at Baptist. On our way down to the hospital I was really upset with the thought that we would be sitting in an ER waiting room with all kinds of germs on a Saturday night. I asked Travis to pray with me that they would be able to get her back quickly so that she was around a very limited amount of germs. To our surprise there was a Children's ER at Baptist. When we got in they told us that it had only been open since Monday. WHAT A BLESSING! We were sent straight back and had several tests done. It is very hard to watch your infant child being stuck for an IV several times with them screaming. Then they did X-rays and an MRI. They determined that everything was okay and that it might have been a pocket of cerebral spinal fluid left from the surgery and glued up the spot. So we went home about 5 in the morning thinking that everything would be okay. It was until about 11 o'clock on Sunday night. She got extremely fussy and starting running a low fever. I woke up Travis and we decided to watch it. After it kept going up we called our doctor again and we headed down to the ER. At first they didn't think it had anything to do with her shunt.... then a few hours later a test result from the night before came back positive with bacteria cultures in her cerebral spinal fluid. The next thing I know they were moving her up to surgery to get the shunt removed. So that is where we are now. They removed the first shunt, added an external drain and a central line. Right now her cerebral spinal fluid is getting drained from her brain into a bag that has to be level beside her head. There is a manual valve so when she gets raised above a certain level it has to be stopped so all of her cs fluid doesn't run out of her head. They are taking cultures on this daily and she is getting pumped with a massive amount of antibiotics. Once they get a negative culture back, they will wait for two weeks and then they will place another internal shunt. So we are here at the hospital for at least 3 weeks. Yesterday morning we had another scare because the infection caused her fever to spike to 103.4 and she actually had a seizure that was due to the fever. She has now been 24 hours without a fever but she has been on Tylenol and Motrin constantly. The hardest thing is that we are limited to the times we can hold her. It is very hard to watch her just lying there in bed not being able to pick her up. I am praying that we can get this infection cleared up quickly and that her new shunt will not have any problems. I am also praying that we will not need to put a second shunt in the 4th ventricle. This was something we have been waiting and watching and will be for the next several months. If she has to have a second shunt placed.... it is just a higher risk of infection and doing this routine once again. Thanks for all your prayers and support for our Sam. We are trying to count our blessings each day to keep us grounded and in check. You are all part of the blessing that we remember each day. I am so thankful for Samantha's Prayer Army!

April 5th- 6 Days Old

Well God is good and He still is in the miracle business. We have made it through some major bumps. When I looked forward to Samantha's arrival there were markers that she needed to get through that I had been worried about for a long time. The first was delivery. She came out and had no major breathing problems. Her weight was 7 lbs. 8.3 oz and that was at 37 weeks. Her head was close to what it should have been and you had to look close to see that it was slightly larger than what it was suppose to be. That was marker number one for me... get her here and have her be stable. The second was her shunt. The neurologist gave us the option of one shunt or two the morning of her second day. His recommendation was to do one shunt now and watch the 4th ventricle to see if and when the second shunt was needed. He wanted to get the top ventricles drained so they could do an MRI to see if the 4th needed to be drained right away. So on her second day she had surgery on her brain to drain the extra fluid. Surgery was a success and even though the 4th ventricle has a significant amount of fluid, it is not causing pressure at this time and could potentially fix itself. To put a shunt in this area is a more dangerous surgery so our prayers are at this time that God will drain this ventricle and that a second shunt will not be needed. We will be watching this for the next few months to make that decision. Sam made it though surgery very well with only a few breathing problems the night after surgery. The shunt business was our second marker. The third marker was getting her to nurse. She has started nursing and was doing so well that she moved to a step down unit yesterday with the possibility of going home today. This morning we got news that her weight had gone down and her sodium and bilirubin had gone up. So we stayed. Tonight she was dropping off in her feeding, had a few high temps and the area where her shunt is was red and irritated. So they ran a large amount of tests. I hated to watch her scream while they took 5 vials of blood and collected urine from her. She is such a trooper for going through so much so soon in life. Most of those tests came back with good results. We did see another jump in her bilirubin so she is quite the glowworm tonight with a biliblanket on her stomach and one on her back. The goggles she has to wear are pitiful, yet adorable at the same time. She also was put back on an IV tonight. We were told tonight that we would not be going home tomorrow either. This really is not a major problem for us because we don't want her to come home until she is ready. It has been hard on Gwen not being able to see us or Sam for several days now. Please pray that she starts doing well again. The ACC has been confirmed with the MRI that the fibers are not there but there is a very thin track of fibers other than the Corpus Callosum that might have a more positive effect for Sam. Time will tell. Time will also tell what delays she might face because of the Dandy Walker Malformation. These things don't bother me. I can handle Sam doing things at her own time. I just don't want her to have to suffer any pain or have major medical problems. Thanks for all your support. If you have posted on my fb page, sent a message or called I have checked messages. It has just been too crazy to get back to everyone. WE CAN'T THANK YOU ENOUGH FOR PRAYERS. Sam doesn't have a few prayer warriors... she has an army! God has been better to us than we deserve and we praise Him for the mighty things He has given to us and done in our lives. Here are a few photos of our little miracle!

Samantha Grace

Sam and her bili goggles!

Gwen and Sam!

March 30- Almost 37 Weeks

Words can simply not express the emotions I feel tonight. The last few days have been emotionally hard. I feel like I am a soldier about to go off to war. I could get to where I am going and they could sign a peace agreement or we could go straight into battle. It seems so strange that hours from now we will start to have some of our answers. Today was our pre-op appointment and it was a lot different than we expected. Glad to have that out of the way. They told us that we might not get to see her but for a few minutes tomorrow before she is transfered to Baptist. I pray that is not the case. A friend asked me what was worring me the most and I guess it would be that we hope and pray that she is stable when they get her out. One doctor told us that sometimes Dandy Walker kids have trouble breathing at delivery and that has always stayed with me. I just need her to get here and to hold her. Then I feel like I can start dealing with the next step. Please pray for Travis. He feels a very heavy load on him right now. I have wished so many times that his dad would have been here for him to talk to. Bless his heart he is surrounded by women. I know that Sam Bode is looking down at him and would be so proud of the man he has become. I can't thank all of you enough for the HUGE blessing you have been and continue to be on our family. I thought yesterday what a huge blessing it has been to have such wonderful friends as role models for my daughter. Gwen has witnessed over and over how to be an awesome friend by what the friends you have all been to Travis and I. I got on facebook tonight and saw a photo of my Dobson family and just cried... speechless. Employees from SCS have donated 59 days to me so I could be out the rest of the year. I can't even begin to say thank you for that amazing gift. The sad part is because of privacy issues I can't know who donated days but if you know someone who did or you were one of them.... I can't thank you enough for your gift. I have one small request and that is for prayers for tomorrow for our family. I have often related my life these past few months to Job because I know that God's word gives us examples of how we should handle different situations. Job suffered so much more than I could ever think of and so I feel unworthy even comparing my situation to his. In the beginning of Job, God and Satan are talking and God allows SATAN to put the trials on Job for God's glory. When Job lost everything... he praised God. The thing that I have been thinking is that Satan must be really upset that so many of God's people are lifting up this little baby in prayer. It is so overwhelming to me how people all over the world are in prayer for our baby. Even though our GOD ALWAYS WINS... I feel like Satan has been putting up a good fight. I just ask you to pray to our powerful God to surround our family tomorrow so that Satan doesn't even stand a chance to come close to us in any way. Beth Moore once said to pray for the bolds of your gate. That a city long ago was only as strong as the wall and the gate that surrounded it. But the key was the bolts that were made to open and close the city gate. Something so small could make such a difference. Please pray for the bolts of our gate. I also praise God for all He has given us. We so do not deserve all the blessings that have come our way throught the first part of Sam's journey but we are so thankful for His blessings. I hope that you know that you are a part of His blessings on our family. Our C-Section is at 11:40 tomorrow. Thank you for your prayers and support. I will try to be updating the blog because this is the best way for us to keep you informed of our Samantha's Journey.... Love, The Bode Family

March 24th- 36 Weeks

So today we are 36 weeks pregnant. It seems like we are 336 weeks pregnant. This morning I really just thought about where we have been in the last 36 weeks. After a miscarriage in the beginning of the summer, we were so very excited to find out in August that we were pregnant again. Then within a few weeks I started getting extremely sick and stayed that way for over 6 weeks. I ended up with a PICC line, on a feeding tube and finally was able to get a very sick gallbladder removed. The day after, they did an ultrasound to check on the baby because I had been so malnourished. They found fluid on her brain, then the Dandy Walker Malformation, then the ACC and Dandy Walker cyst. We have had 10 ultrasounds, spent over 20 days in the hospital, countless visits to the doctor and it seems like every test they could do on a pregnant woman. This morning I was just emotional to say the least because all of this craziness is finally coming to an end and a new kind of craziness was about to start. We are finally about to have some answers to all of our questions with unknown answers. I was also nervous this morning about seeing if or how the fluid on her brain had changed. In the middle of a morning of praying, thinking and crying, I came across a page of people who were praying for our family today on facebook. What a peace that came over me. I realized that all of the tests, doctor appointments, hospital stays, and more that we have been through are completely trumped by the amount of prayers and support that have come our way in the last few months. God has used you all to help us get through this. I can't even begin to thank you all. I actually started crying again just because I felt blessed way beyond what I deserved! You all make a difference in our lives daily!
So our day was actually pretty good. Sam's ultrasound showed that the diameter of her head is still measuring 5 weeks larger than her body. However one of the ventricles looks as if it might not be as big as it was a few weeks ago. PRAISE THE LORD!!!! She still has a lot of fluid on her brain and the cyst by the cerebellum where the Dandy Walker Malformation is but it seems that it has not gotten worse. Since we actually had a hospital stay 2 weeks ago because one of my tests was showing too much protein in my urine and they diagnosed me with preeclampsia, my doctor will not let me go any longer than 37 weeks. So we will be having a baby next week. We should get the news of exactly when tomorrow once they are able to get everything scheduled with the hospital but we are looking at first thing Thursday or Friday morning. This is exciting and scary all at the same time. We are so excited to have her here and to hold her. We are also very nervous because we have been told that SOMETIMES Dandy Walker children have trouble breathing, eating and more when they are born. This is something we are trying to give to God and not be nervous about but I can honestly say that has been a hard thing for me to do. Then we have been told that most likely she will be taken to Baptist within 24 hours. It is still not 100% that she will have a shunt put in but from all we have been told we feel pretty sure this will happen because of the fluid in the ventricles and the cyst. Everything else is unknown and will be until she is here and we can start to get some of our questions answered little by little. Please continue to pray for our little girl. She is such a fighter and no matter what happens we are so blessed by her in our lives already. God continues to bless us everyday. I can honestly say that there have been some very hard times for us in the past few months and many tears and desperate pleas have been sent to God, but I know that He has never left me. I heard this song the other day and it has played in my head constantly since then. I am so very thankful that my God knows what is best for me and can show me that blessings come when you least expect it. Thank you to you all..... you have been a blessing to our family over and over. We are so thankful that our special blessing Samantha will have you all in her life.

March 3rd- 33 weeks

So it has been a while since I have posted and since we had any kind of news. We went to the doctor and had another ultrasound today. The last ultrasound we had was 5 weeks ago. Since then we have had two regular OB visits without ultrasounds. These were so strange because they were regular appointments but we knew that our situation was anything but regular. We also had no clue how much the fluid on her brain was growing. Also in the last 5 weeks I was sent to the hospital 3 times to be observed. The first time I was not feeling right and the outer part of my cervix was open. Everything turned out okay. The second time I started spotting a little bit and once again everything checked out. The third time was Tuesday. I was cramping and my blood pressure was up. But once again everything checked out ok. This past time I didn't want to go to the hospital because it takes several hours to get observed but I went because the doctor’s office wanted me to go. So by the time we had this appointment we were very frustrated with all the craziness and the unknown. I guess all of this was just getting to me. The last week or two I have been feeling very tired and worn out emotionally and physically. So we were really hoping to get some kind of plan in place today that would help us feel like we had some kind of control in all of this craziness. The ultrasound showed us that the fluid has increased from 1.4 on the one ventricle to 2.0 and the side that was 2.0 went up to 2.5. This meant that the actual size of her head is now being affected by the fluid. Her size is perfect for a baby at 33 weeks but her head is measuring like she is 38 weeks. Even though the doctor said that he still thinks we need to prepare for the more severe end of the spectrum, he also gave us hope because he said he could see some normal brain tissue. He also told us to prepare that it will most likely continue to increase until she is here with us. The doctor was so good to sit with us today and make a plan. So I could continue to work and not have to worry about getting observed at the hospital, he has me now going to two appointments a week to get observed with a non-stress test in the office for the rest of my pregnancy. This is also due to the fact that we delivered early with Gwen due to high blood pressure. If they find any abnormalities at these appointments, they will go ahead and take the baby. We have also made the decision to have an amnio between 36 and 37 weeks to check for the development of her lungs. The plan right now is to deliver at 37 weeks unless the lungs are not completely developed but to deliver at 38 weeks no matter what. So Samantha Grace will bless us in 4 or 5 weeks if not sooner. So I had to make 5 appointments today before I left and it means tons of driving to Winston but it will not be forever... I guess the good news is that we now feel like we have a plan and can see a light at the end of this very long pregnancy.
We have good and bad days but we know who is ultimately in control. Words can't express how God has blessed us. Gwen is asking more questions and is handling all of this better than we thought she would. She told Travis the other night that even if Sam came out with a large head and looked strange she would still be her princess. Then when we were talking about Sam getting the shunt the other night she looked at me and said... "Mom, It should have been me... It should have been me that had to go through all of this!"  All I could do is hug her and tell her that God has a reason for everything and He knew that Sam would need to have an amazing older sister like her. Please continue to pray for us for the next several weeks. God has blessed us with the most amazing people who have been so kind and supportive. I just can't end a post without thanking our amazing God and all of the people who are constantly praying and sending love our way! We love you all so much!

February 10th -- 30 Weeks

So I had an appointment yesterday and it was the first one without an ultrasound in a very long time. Last time I was at the doctor, two weeks ago, he said that they were going to wait 6 weeks to do another ultrasound. He said he knew the fluid would grow some and it would not change any care they would be giving me right now. He thought it might be better if we didn't check it so we didn't worry. I think we worry no matter what, but I did see his point. So we won't see Samantha Grace again until the middle of March. Since we didn't have an ultrasound, it was a very normal appointment. We have not had a normal appointment since our first one at week 8. Right after that was when I started getting sick and was in and out of the hospital until my gallbladder came out at week 15. Then we started getting bad news at each appointment after that. It was strange to have a "normal" appointment. Nice but strange. I guess because we know that everything is not really "normal." So many aspects of our lives have changed. The unknown is still there and we know that right now is just a waiting game.

In the past few weeks my prayers have changed from having a child that is my idea of "perfect" to asking God for the blessing of His idea of "perfect!" Ultimately He does know what is best for us. I guess that we all have a view of what we think our life will look like in the future and situations in our lives end up changing all that. A friend of mine sent me an inbox message on facebook the other day with this, "I can't remember which of my relatives or friends who once posted that having a child with severe delays or medical issues is much like planning a trip to Italy and ending up in Denmark. Both are exotic, interesting, and wonderful places. It's just that one is the place you planned for, dreamed about, and the other is not. The joy in exploring the unplanned Denmark may outweigh the planned trip to Italy." I guess we feel like we have just boarded the plane and just found out that we are going to the wrong destination. Now it is just waiting to get there and see what it will be like.

While I was listening to a CD I made a last year I revisited this song and it had a brand new meaning for me.



I once again can't post without thanking all of you for your prayers and support. Your prayers, calls, cards, kind words, food and everything else you have done to show us support uplifts us daily! We are so blessed to have such wonderful people in our lives! WE LOVE YOU ALL!

January 24 (27 weeks)

So once again I feel like I have been hit by a truck. Doctor appointment days do this to me. The ultrasound went okay. The fluid in one ventricle has stayed the same and the other has increased to 2.0. This was something that so many of you were in prayer with us for and I thank you for your prayers. It is a blessing to know that the fluid is not increasing at a rapid rate. The next part of the appointment was with questions about my appointment from Friday. At the end of last week, I called the doctor because I was not feeling right. I was having mild pain in my lower back, seeing spots, having headaches and my stomach was just having strange pains. So they had me come in and found that the outer part of my cervix was open and it my cervix was soft. They sent me over to the hospital for some tests to make sure I wasn’t going into labor and everything checked out okay. They are still worried because I am still seeing spots and I still have headaches so I had some additional tests that I had to turn in today. I should have most results back tomorrow. They are worried about the onset of preeclampsia. Then Travis and I had a list of questions to ask. Travis’ first question was about the new finding of the Agenesis of the Corpus Callosum that was told to us by the MRI and the neurosurgeon. Travis asked him about the mortality rate in infancy or childhood and without hesitation the doctor told us that there was a significant chance because of the findings of all three major problems with the brain. He also told us that we really were looking past mild complications and even a little past moderate complications with Samantha. He said could there be a miracle and she could see minimal effects, yes, but he would be highly surprised. He said that we needed to prepare ourselves for the fact that Sam might not walk or talk or be on a feeding tube. I am glad that he was being honest with us and I know he is just trying to prepare us for the possibilities of the worse situation. So we left a little beaten down. It has been hard today. I know this is a journey and we have ups and downs but it is hard to think I am having a child who we might outlive. Travis and I just don’t want her to be in pain. I hope tomorrow is my get up and take action day because today has been a down in the dumps day. The thing that has hit us the hardest is that we just don’t know and won’t know until she is here. We do know however that God has brought us this far and he will continue to hold our hands through this. Thank you for your friendship, prayers and support. Please say a prayer for an unspoken friend who we saw at the doctor’s office this morning who had just received some bad news. This sweet lady was really due some good news and I pray that once she gets through this process that God will send tons of blessings her way. Life is so precious hug your kids every chance you get!

January 15 (26 weeks)

     Well there is really no new news at this time but I thought I would just update some of my thoughts and feelings from the past few weeks. I am doing this more for another parent that might be facing a similar situations sometime in the future. I have found that no two situations are exactly alike but I pray that God will lead the right people to this site someday so that they might not feel so alone in their journey. I also want to make sure that all of you precious people who are supporting us and praying for us know just how your prayers are working...
     I have been doing okay for the most part since the last blog post. I think that working and having a five year old helps with that.  I feel like I have been cruising along, thinking about things, processing all this in my mind and all of the sudden it was like I hit a brick wall Thursday night. Gwen and Travis were already asleep when my worry and emotions got the best of me. And at that time... God provided. He sent me my two loving sisters who talked to me on the phone late into the night. They helped to remind me that I wasn't alone. I had them and I had God. Although this was scary it was going to be okay. Since that time He has been opening my eyes to people He has placed in my life for a reason; for support, for guidance, and for thier experience. First thing this morning I got a call from a friend that was the biggest blessing to me. God was holding my hand as she talked about the journey she had been through with her son and that her son had achieved so much more that they doctors thought he would. He has been sending me the right people at the right time to help remind me that life is a journey.... good and bad... but you don't have to feel alone.
     Tonight I was working on my Sunday School lesson for tomorrow and I was reading in Job. It seems to be a book of the bible that God is sending me to a lot lately. While doing some additional reading for my lesson I came across a quote from Mark Twain, "I am an old man and have known many troubles, but most of them nevery happened." It helped to remind me that so many times we worry about things that don't end up happening. Trust is the only option we have! I can't tell you what my friends and family mean to me. How without all of you, I don't know if I could make it through. Travis, Gwen and I are so thankful to have all of you in our lives. I am so thankful that God knew we needed you! Everytime we hear that people are praying for us it brings tears to my eyes. I can feel God's arms wrap around me. I am so thankful that God is showing us His love through you! This song has been such a help to me this week. I feel that He is shining His light around us by using you. You are helping to light up our sky..... thank you....

January 4th- (24 weeks)

Today was a very long day! We were given some good news and some bad news. The good news is that they didn't find any heart problems.... PRAISE THE LORD! That was how we ended the day and we needed to go to an appointment without hearing the words.. "I am seeing something that concerns me!" A normally functioning heart is a blessing. The bad news is that they found some more problems from the MRI. The neurologist told us today that he found something else that was concerning to him. It seems that along with the fluid on the brain that he is now considering hydrocephalus which will most likely require a shunt within a short time after delivery and the Dandy Walker Malformation that was found a few weeks ago- They now see that she either has an absence or agenesis of the corpus callosum. This is the fibers that connect the two sides of the brain and it is either not there or not completely formed. The results of this could mean a range of problems that could be possible. This was the answer we were given when we were told about the dandy walker malformation which means that we won't know until she is born.  He also saw a dandy walker cyst that will most likely mean a second shunt.  He told us to prepare for a child with delays. I think that God has already been preparing our hearts for this and this is not what scares us. We know that every child is put on this earth for a purpose and that our God knows what He is doing. For me it is just that I am such a planner and I can't really do anything about any of this but wait. Waiting is hard for me. I pray daily that Samantha is as healthy as she possibly can be. When they gave us a tour of Brenner Children's Hospital today they showed us both the Neonatal ICU and the PICU as well. Their reason behind this was that there was a chance we would spend time there someday if she had trouble with her shunt. The doctor said that 50% of shunts fail within 2 years and 80% fail within 8 years. They have to be replaced or other surgeries have to take place. I just feel like I worry enough as a mother of a child who doesn't have medical problems and I am already worrying about Samantha's medical journey and she is not even here yet. The bottom line is that I need to put it in God's hands and try to not worry. I am going to try... hard. When I couldn't sleep last night I starting reading Job. It made me realize that I feel like I am in a pit but it is really just a valley. Job was in a pit!!! He made it through praising God and I know that I can too. Thank you so much for your calls, emails, and messages today. WE LOVE YOU ALL!!!