Dallas appts. (not confirmed yet)

I got a call from my genetic counselor today and said that I may have an appointment in Dallas as soon as Thursday, July 3rd for the MRI. I would then have to be back on July 9th for the appointments with the neurologist, my OB, the cardiologist, and to tour the NICU at Children's medical. We have to go twice because the neurologist needs the MRI results before we can meet with him. If they can not get us the MRI done on the 3rd then we will go on the 10th and then go back to Dallas on the 16th for the other appointments. When we get the MRI done they said we would be able to talk with the doctor doing it and she will be able to tell us more about the type of spina bifida Autumn has. I am excited about almost being there to get more knowledge of what to expect but I wish we would have a little more notice since James is out of town the 4th-9th and now we may have to change some plans around. They should call me back Monday or Tuesday to confirm which dates we actually need to be there.

I miss Madison

Madison left last Friday to the lake with her dad and his family. After that they took her straight to spend the week in Mesquite with my brother's family. So, I am now missing Madison and ready for her to be home on Saturday. Her and I are so much alike and butt heads all the time. Both of us are stubborn and strong-willed and like for things to be the way we want them. :) Madison though is also very affectionate and kind hearted. Since she has learned she is going to have a baby sister she has been saving money and wants to buy EVERYTHING for Autumn. She is going to be such a wonderful and protective sister. Now, as for her and Gage--they do not get along very well. I think he came too soon after James and I were married and she did not get time to adjust before this little brother came around and grabbed ALL the attention. I know she loves him but I think she gets kind of jealous with all the attention he requires. I think Autumn is giving her a new focus and she feels more of a responsibility as a sister. Today she called and said that they went to Build a Bear and created Autumn a bunny named Flower. She said they did not stuff Flower enough so they had to go back and Flower had to get spine surgery just like Autumn will. She said they have a wheelchair you can buy with flowers that say, "Get Well Soon" that she wants to buy for Autumn's bunny. Madison has already spent over $50.00 of her own money buying clothes and items for her. It is scary knowing they are almost 10 years apart so Autumn is going to be able to get whatever she wants from her big sis when she's a teenager--not good for us. :) It has been so quite and boring with Madison gone. I had forgotten how much easier it was with just one child around but I have realized that even though I complain, I love the chaos of the kids running around screaming and fighting and talking to me non-stop. I could never imagine life without them. It would just be me and James hanging out in peace and quite and although that sounds wonderful on some days, it would get old fast. Madison will be home for a week and then James and Gage are leaving to visit his family at the coast. Madison was suppose to go but I think she has changed her mind and I am actually glad that her and I will get to spend some quality time together and the house will not be as empty and boring while they are gone. Although mom and I have lots of plans to organize and paint around here while the boys are away. :) Only 2 days left and I will finally get to see Madison again. :)

Still waiting....

to hear from my genetic counselor of when my appointments will be for Dallas. I kind of feel like my life is on hold until then. I need to plan a few things for July but can't until I hear when we will be gone. I am sure though it takes time to to coordinate going to see 4 or 5 doctors within 2 to 3 days. I am just getting anxious to find out more information so we can get our game plan ready for September. In the meantime I will just have to be patient and wait.

Thank You

I just wanted to take time to thank everyone so far for all of the thoughts, prayers, and cards we have received. It gives us such peace just knowing that there are so many people out there thinking of Autumn and our family. I feel like almost every minute of the day there is someone saying a prayer for us. That gives me great hope, peace, and joy. I know what we are going through is a big deal for us but I feel like there are so many other people going through such greater trials than ours. Just the other day we were amazed because James' uncle had told the armed forces he works with about Autumn and the men took the time to gather in a circle, hold hands, and pray for our little girl. There are men across the country risking their lives for our country and these men took time to pray for Autumn. We have received e-mails from family letting us know they have passed the info to friends in which the friends have passed on to their church and Autumn is being prayed over by so many people we have no clue even exist. I have received e-mails from strangers who just want to let me know they have been through the same ordeal or something similar and want to just be there to guide us through all of this. The greatest joy is knowing that God is being lifted up and thought about each time someone takes the time to pray or send us a note of love. I am going to have a mile long thank you list by the end of this year and it will show me and Autumn (when she is old enough) that so many people love our family and that God's love is so awesome. I can not express enough how thankful I am to all of my family, friends, church family, and all of the people I don't even know that have taken the time to care for our family. We love you all!!!!!

Our first bill...

Well, we received the first doctor bill in the mail today. It gave us our first glance into what the next few months will bring. The bills are going to be a little overwhelming for me since I am the one who takes care of budgeting for the family and I just got ALL of our debts paid off except the house and car. All that work just to get into debt again. I know though God will provide and as long as we can still eat and have our daily needs met I know the medical bills can wait. It is part of my letting go and not worrying that I am learning through this whole ordeal. I am going to be a completely different person when all of this is over and I thank God for that. He is just molding me and shaping me more with what suprises each new day brings. He is teaching me that I can not have it all planned and figured out when I want and that I can not stress about the materials of this world and just be thankful for life, health, family, and friends.

Finally some sleep

Last night we were suppose to stay up all night at a Relay for Life walk but a storm was coming so at about 10:00p.m. we had to pack up and go home. Mom decided to take the kids to her house to spend the night. I went to bed around midnight and I actually slept until 9:40 a.m.!!!!!! I do not know how many years it has been since I have slept past 9:00am. The last two weeks I have been awake for about an hour or more almost every night and then waking up at 7:00am for work. It felt so great to finally be able to sleep in for once. Thank you Lord for giving me peace last night.

Some good news

Today my genetic counselor called to let me know what she found out from our insurance. She found out that our insurance will allow us to have as many sonograms as we need and agree that we need to have the fetal MRI done and the fecal ECHO done. We also found out that ALL the doctors and hospitals we are going to are in our network so insurance will cover 80% and we will just have to cover the 20%. Praise the Lord!!!! She is going to try to set up our appointments in Dallas on James' days off in July so hopefully we will hear from her next week on when those will be. I will keep everyone posted.

Prayers needed

I know we have asked for lots of prayers for Autumn and everything related to her situation. I am now asking to add James and I to your prayers. We are both stressed, overwhelmed and drained. I did not think I would have so many emotions going on all at once. We both are trying to just get our strength from God to make it through these days when we are having to continue to work and take care of our household responsiblities. I think we both wish we could just take a break and be selffish for a little while to cope with what we are given but we can not. I know Satan wants to drive us apart but we have to continue to rely on God to keep us close together so that His glory will shine through all we are going through. Pray that we will continue to draw close to God as a couple and to talk to each other when we are feeling overwhelmed and emotional and not keep it to ourselves. Who would of thought a little 8 inch, 12 ounces baby could take our family on such an emotionally draining journey??? She is going to be one special little girl that I already love so much.

Sophie needs a foster mom

This is my "special needs" dog Sophie. She is my biggest concern when we go to stay in Dallas. She requires a really special person to take care of her while we are away. I adopted her 5 years ago from Bullmastiff Rescue. She was previously abused by a man or boys so she does not like men except my dad and sometimes James when I am gone. :) She also has anxiety and when she goes outside you have to stay near the door or she will freak out if you do not open soon enough and will jump or break down the fence. She is also heat intolerant so she can not be outside for long. She also has a little bladder issue since she is getting old but as long as she is locked in the bathroom while we are away she does just fine. Anyways, I am looking to find a place she can either stay for a couple of weeks while we are gone or find a college girl or someone to come home sit for us for the weeks we are gone. She loves children but has to be in a home without men. She also does not get along with other dogs besides her pomeranian sister, Sadie. We also have a cat she likes but not sure if she would like any other cats since we got ours when she was just 2 weeks old. If we do have someone stay in our house while we are gone we have a tempermental cat that you would have to deal with as well. She screams but that is usually the extent of her meanness. :) She likes to stay away as much as possible. She likes adults somewhat but HATES kids. It does not help that Gage likes to throw toys at her to hear her scream. Anyways, if there is anyone reading this who may meet our high criteria and would like to help us out by caring for Sophie then please just send me a post and let me know. :) We have decided to leave Sadie with my mom or take her with us to stay in Dallas. We will also have to take the bird, bearded dragon, and hermit crab to Dallas unless we find a house sitter. The funny thing is that my sister in law does not care for animals but loves me enough to put up with them for a short time. Thanks Jen!!! We will just give the fish a vacation feeder while we are gone. As for the cat, we will just need to find someone who lives near by to come over twice a week to feed her and clean the litter box once a week. Yes, I know we have a little zoo but I just love my animals too much to give them away. Animals have always been one of my passions.

Changing from the inside out

Yesterday in church we were singing a song that says "Change me from the inside out Lord". James leaned over to me and whispered that God is literally changing me from the inside out. It made me realize 2 things. One that even though this affects my whole family that really I am the one who is going to be going through the birth and delivering this special baby girl. God has entrusted me to be her mommy and that makes me feel so blessed. The second thing I thought about is how this is my purpose. I know as a Christian my purpose in life is to glorify God. I always wondered how God was really going to use me to glorify His name and show that everything I am and everything I have is all His. Well, this would do it. For the past three years God has really been molding me and shaping me. I have been a Christian for 20 years now but had not really seen significant growth in my walk until these past three years. I contribute the growth to my husband and my church. Both have shown me to see God and myself differently than I grew up seeing him. I grew up thinking that since I was a "good girl" that I deserved to be blessed by God. When I was 19 and became pregnant when I was not married all I asked God was why? Why me? This was my one "big" mistake and I felt like I was being punished for it. I soon realized though that my daughter was a blessing and not a punishment but I still always wondered why God gave her to me when he did. Well, the past 3 years has also shown me that I do not deserve anything from God. I do not have "rights" to be happy. Sure God wants to bless me abundantly but not because of anything I do but because of who He is. I have also learned that I did not accept Christ because I made the right decision--God actually was the one who chose me. He decided to soften my heart so that I would accept his unfailing love and forgiveness. He hand picked me to be His daughter and to adopt me into His family. This makes me see God in a whole new light. I realize I did not just stumble onto Christianity or that it was because my parents raised me knowing God. It was because God chose to intervene in my sinful life and make me His own child. I realize that I actually have a responsibility to glorify Him all of my days. This motivated me to be active with my Christianity and just want to know Him on a much deeper level. I have also learned these past couple of years to be thankful for my children's health. I always took for granted my kids being healthy but when we saw my son was small for his age and we had to decide to give him growth hormones or not then I realized that anything can happen to my children's health and that I need to be thankful for their health. This was one reason I was so apprehensive about having a 3rd baby. I was done and just wanted to adopt one day but James really wanted another baby. Since I was also learning how to be a submissive wife I finally gave into him and decided one more. I told James though that I felt I was being selffish with wanting another baby and scared this one would not be healthy. James told me that he would feel blessed if God chose us to be the parents of a special needs baby because it takes special people to raise them. I was mad at him for making this comment and told him to NEVER say anything like that because now we are going to have one. :) Little did I know that we would actually be having one. God has also been preparing me for Autumn way earlier than I realized because in church we have talked a lot about trials and storms we go through in life. It really got me thinking about how smooth things had been going in our life and why God was not giving us a storm and it kind of worried me but ofcourse I was also thankful. I just know that trials bring growth and I wondered if I had really grown and how I would react to something going "wrong" in our lives. I would like to think I would trust in God but I really was not sure that I was to that point yet. God decided it was time to test me and gave us our storm. He also equipped me with strength, trust, and peace in Him that everything is in His hands. I know it is my responsibility to show others that I am still praising God in our storm. I am embracing what He has given us and it is my goal to make sure His goodness is revealed in our lives. I know there will be the ups and downs and Satan will try to alter my way of thinking but God will be shown in the end through this all. Thank you my Father for all the abundant blessings you have given us.

So much to plan......

Last night I became a little overwhelmed with emotion and finally released it all. I have not cried since finding out about Autumn. I have complete peace that she will be fine no matter what disablilities she may have. Around 4am it was time to just let go and cry about all the overwhelming changes that are taking place in our lives and the decisions I have to make. Anyone who knows me knows I am a worrier and I stress very easily. I stress more over the smaller issues in life and not the huge ones. I guess I feel I can still control the smaller issues but I know the big ones will have to be in God's control. I am also a controlling person as well. :) God and I have always had a continuing battle with me trying to let go and let Him. Well, my issues that I am focusing on now is just being scared of being gone for so long. I am blessed that I will be able to live with family where I can feel completely comfortable and relaxed but it still is not my home. I have concerns about what to do with Madison and school. Trying to figure out if she stays here, goes to school where my niece does, or we homeschool. I am looking into all options to know what is going to be best for her and help her. Madison has already taken a complete attachment to her baby sister. She has been doing chores all week to save money to buy clothes and things Autumn needs. They are going to have a very special bond. I am concerned just how her and Gage will adapt to being away from me at times and then with me in a place that is not home for so long. I have concerns for the zoo we have living at our house and what to do with the animals while we are away. My dog Sophie is the main concern because she is my special needs, high maintenance dog. I will post more about her later. I am just saddened by the fact that I know James only has about 3 weeks of time he can take off and knowing he will not be able to be by my side and Autumn's side the whole time. Knowing he will not be there everynight to comfort me when I feeling overwhelmed and helpless. I then have the disappointment that I will have to deliver a baby with a new doctor, new hospital, and then will not be able to bring my baby home for a long time to show off to all of our family here. There is much to prepare for and think about these next few months. I know God will put everything in place and will be there to comfort me when my husband can not but these are all the emotions I am going through as our first step in this journey to having a baby with spina bifida. I wonder what else is in store.

Our Story

I have decided to start a blog about the new journey we will be embarking on so that all of our friends and family will have a place to go to get updates and see how we are doing and I will not have to constantly be sending e-mails and calling everyone. Well, here is the background information on what out new journey is. Last week I went in for my 20 week sonogram. We were excited to find out what we were having because my oldest daughter only wanted a little sister. Thankfully that is what God has given us. We have decided to name her Autumn Krystene. After the sonogram later that afternoon I came back to the doctor for my regular appointment. I was then told that the sonogram was abnormal and that Autumn may have a blocked ventricle in her brain because the brain development was abnormal. I was told I needed to go to a high risk pregnancy doctor to have another sonogram done and see what was wrong. So for the next 6 days we just had to wait until we could go see Dr. Blanco. I drove myself crazy trying to research on the internet what it could be and what procedure may need to be done. I was concerned about what affect it would have on her mental capablitlies and I just wanted to know exactly what was going on so we could deal with it and have some peace about it. Well, Wednesday finally came and we had our appointment with Dr. Blanco. The second ultrasound gave us our diagnosis that Autumn has a neural tubal birth defect called spina bifida. The defect occured during her first 30 days of life. Her spine formed beautifully until about L5 to S3 and then there is a hole in her spine. That means all of those nerves are exposed. We were told that she would have to have surgery within 24 hours of her birth to try to minimize the nerve damage she may have. The bad news is that no one in our area can do the surgery so we have to deliver in Dallas and live there until her surgery is over and she is well enough to come home. I am blessed that my brother and his family live in Mesquite and we will be staying with them during our LONG stay. Back to Autumn, we will not know what kind of damage she will have until she is born. It can be severe to where she is paralyzed or she could have no damage and be a normal little girl and everything in between. Her hole is in her lower back to tailbone so that means if there is any damage it will only affect where the hole begins down. This means she could have bladder and bowel problems. She could be paralyzed at the waist or just not have feelings in her toes. She could have club feet and may need surgery to correct that. Our biggest concern is that 90% of abbies with spina bifida develop hydrocephalus which is water on the brain. This is caused by pressure from the spine pulling on the brain and causing spinal fliud to leak into her brain. If she develops hydrocephalus either in the womb or after her surgery then they will have to put a shunt in her brain and there will be a tube that drains it to her belly. I will continue to see Dr. Blanco to monitor the fluid in her brain. Hydrocephalus could cause some brain damage so we are just praying that it does not happen or happens later in time so that the damage may be minimal. So, this is our game plan as of now. I will continue to see my regular OB, Dr. Martinez and also Dr. Blanco every 4 weeks for now. In about 6 weeks we will have our first doctor appointments in Dallas. I will be delivering at Baylor and then Autumn will be transferred to Dallas Children's Medical Center for her surgery and recovery. In 6 weeks we will be meeting with my doctor and talking about the plan for my delivery and also meeting with a neurological pediatrician to discuss exactly what to expect for Autumn and her care and all the thousands of questions we will have for him. We will have another appointment about 4 weeks after that to have an MRI done on Autumn for the doctors to have a closer look at exactly which parts are effected. At 36 weeks I will then have to be in Dallas to wait until I deliver and then stay for 6 weeks or longer waiting to see how Autumn recovers. The game plan may change once we visit with the doctors in July and we will keep everyone posted. We ask for everyone's prayers as we begin our new journey and learning about spina bifida and adjusting to all the changes in our family.