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!