This experience has truly been overwhelming in so many different ways. All the stress and anxiousness that I have felt since October is overwhelming and the continued support from all friends, family and strangers is unbelievably overwhelming. I am simply amazed at the out pour of support that we are receiving from such wonderful people!
I have not blogged in a while for a reason. I am fine, however I wanted to know that for sure before I posted again. My doctor and I found a lump in my breast a few weeks ago and I was scared to death. I didn't know what to do and was so stressed by everything else that everything just snowballed! There were lots of tears and panic and the fear of the unknown. I took a couple days off of work that I would like to call mental health days. I needed those days to get some extra rest and do something other than worry but, I was in no condition to work. I had my first Mammogram and an Ultrasound and the radiologist was in there with me during the Ultrasound so he could read it live. Thank the Lord that it was nothing, we were so relieved. Again I feel as if everything that I am going through is teaching me something. Whether I get that all figured out now or later down the road, I am sure it will all make sense someday.
One thing I do know that I have learned from all of this when I was reflecting on myself one day, is that the only way you will ever find happiness is being able to be truly and honestly happy for others. Read that sentence again. I may have spoke about this in one of my earlier blogs but, I cannot tell you how important this is. That doesn't mean be happy for them to their face and then turn and roll your eyes when they walk away. It really means being happy for others. I don't know why it happens but, I think it starts when we are little kids. You are happy with your toys until you see what little Sally has and then you want her toy. Why can't you have what Sally has? Now hers becomes better than yours and jealousy starts.
This journey has taken me to different place in my life. I have learned to be truly happy for others. I would not want anyone to have to go through the things that we have been through. Therefore I am happy for others, not jealous but, happy. I am so happy that Sally gets to take a wonderful vacation because you know what, she deserves it and deserves to be happy. I don't get to go on vacation but you know what, I have my health and that makes me happy. I am very content with where I am in life and that makes me happy.
I am beginning to give back to others. Whether it be taking some groceries to people or letting people know I care, I am reaching out to others. It is not much but, I am doing it and trying to make a difference. We have starting getting things together and organizing a benefit/fundraiser for Livie. I am becoming an expert in this area. Please tell people about me so that I can help them too if they need it! I have absolutely loved planning this and working on getting people together and getting donations that I believe that this is something that I am meant to be doing.
Livie is doing wonderfully. She is getting so big and weighs 16lbs 10oz. I keep telling everyone she is getting ready for her surgery just in case she loses a little weight she will still be fine. She is rolling over and can almost roll from her back to her tummy. When you do put her on her tummy she tucks her knees up under herself and tries to move forward. I am not ready for that yet! We have also started her on cereal and introduced her to green beans the other night. She liked them which is good! I still wonder if she gets headaches or has some sort of pain from the Craniosynostosis. Every once in a while she cries like she is in so much pain. It makes me nervous. Her surgery is right around the corner and I will be so thankful when it is all over.
We have decided with the help of friends and family that there will be a benefit/fundraiser for Livie! This has been an excellent way to keep my mind off the upcoming surgery and to focus on something else for a while.
Saturday, March 12, 2011
Softail Saloon, Superior IA
6pm-8pm will be a bake sale and silent auction
8pm live auction
We have received some wonderful donations for the auction. We can still use your help! If you wish to donate an item or two to be auctioned off please email me at, jenniej530@yahoo.com.
Thank you again to everyone for your continued support and we hope to see you on March 12th!
Lots of love, Jennie
Wednesday, February 23, 2011
Wednesday, February 2, 2011
I need to breathe........
Feeling the stresses of the upcoming surgery are starting to take their toll on me. I try so hard to remain positive and happy that it is becoming more difficult as the days go by. I continue to show anger toward my husband and I am not exactly sure why. I have heard that you take out your frustrations on the ones that are closest to you, unfortunately that is Mike. I know that none of this is his fault, not the loss of his job, not Livie, not the renters moving out and not the financial situation we have found ourselves in. I love my husband more now than I did the day we were married. He is my rock and keeps me focused. I am going to need him more than ever these next few months.
My stomach remains in knots most days, I am extremely exhausted and my hair is falling out. I am losing hair the size of small animals but, am assuming it all has to do with stress. Thank goodness I have been blessed with a lot of hair.
I find that I am trying to find comfort by eating. Unfortunately that is not working out so well. It is only starting to piss me off that I am gaining some weight back from what I lost when I had Livie. I really wish I could just remove my sweet tooth and be done with it. If I don't turn to food then who or what do I turn to? I would love to talk about things to my mom but I hate to burden her or anyone else for that matter with my problems. It is the burden that I am scared of. The burden of taking others time to listen to me. Burdening them with my sadness and the fear that I am feeling. I don't want to burden others with my problems.
I believe that God is answering our prayers. Mike has found a new job and we have found renters for our house in Michigan. We received a donation from Women's Night Out in Estherville. It was such a wonderful surprise. That has prompted us to start the Livie Fund. There have been some donations made by others and we appreciate your help so much. There is no way to ever thank everyone for all the support and prayers we have been receiving. On Saturday, March 5th, 2011, we plan on doing a lia sophia fund raiser for Livie in Estherville however the location is TBD.
I received this in an email from a friend of mine last night, Psalm 55:22 Cast your burden on the Lord, and He shall sustain you. Praying this is true.
My stomach remains in knots most days, I am extremely exhausted and my hair is falling out. I am losing hair the size of small animals but, am assuming it all has to do with stress. Thank goodness I have been blessed with a lot of hair.
I find that I am trying to find comfort by eating. Unfortunately that is not working out so well. It is only starting to piss me off that I am gaining some weight back from what I lost when I had Livie. I really wish I could just remove my sweet tooth and be done with it. If I don't turn to food then who or what do I turn to? I would love to talk about things to my mom but I hate to burden her or anyone else for that matter with my problems. It is the burden that I am scared of. The burden of taking others time to listen to me. Burdening them with my sadness and the fear that I am feeling. I don't want to burden others with my problems.
I believe that God is answering our prayers. Mike has found a new job and we have found renters for our house in Michigan. We received a donation from Women's Night Out in Estherville. It was such a wonderful surprise. That has prompted us to start the Livie Fund. There have been some donations made by others and we appreciate your help so much. There is no way to ever thank everyone for all the support and prayers we have been receiving. On Saturday, March 5th, 2011, we plan on doing a lia sophia fund raiser for Livie in Estherville however the location is TBD.
I received this in an email from a friend of mine last night, Psalm 55:22 Cast your burden on the Lord, and He shall sustain you. Praying this is true.
Friday, January 21, 2011
Thank You!
I want to say Thank You to all of you that have helped us in some way or another. I have had people offer to watch the girls so Mike and I can get out of the house for a while, I have had people want to help and send us a little something in the mail, I have someone making us dinner and bringing it to us tonight. The response from everyone has been overwhelming and truly amazing. The purpose of the blog was not to have people send us money or have you do things for us. It was originally meant for me to have a healthy outlet and to make others aware of Craniosynostosis and to help other families facing the same difficulties. It has turned into something that has had a huge impact on my life.
Through all of this I started questioning my faith and decided I may not even know the definition of faith. How could I have faith in something if I didn't know what faith was? Faith is the confident belief or trust in the truth or trustworthiness of a person, concept or thing, according to Wikipedia. I am supposed to have faith in God so I am supposed to have trust in him. This all makes sense and I can handle that. However, all this stems from the bible. How do we know that the bible is 100% correct and true? It was written by his followers and people that experienced him. But this is all just hear say continually being passed down. I don't know, maybe I am reading to much into it and making this harder than it needs to be. Or is this where my faith comes into play and I need to trust in it that it is true.
I was on my way home from work the other day and my mind wonders frequently, I began thinking about all the things that were happening in my life. It was so weird but at that very moment and I can even remember where I was when this happened I knew what I was supposed to do. People say that God has spoken to them and I always thought that those people are crazy but, I think he spoke to me too! I didn't hear a loud voice from up above I just started putting everything together. I was supposed to talk about our situation with other people. I am supposed to educate other people on Craniosynostosis because too many times it gets confused and diagnosed as Positional Plagiocephaly, flattened head. By the time the correct diagnosis is made it can have caused damaged or require more than one surgery. I am supposed to talk to people and let them know that it is OK to ask for help and receive help from others. Once our situation is resolved then I am to take what I have learned through all of this and pay it forward. I am to help others by setting up benefits or fundraisers, donating my time or anything else I can do to help along the way.
I have found myself during our journey. I know that I am a strong woman that will fight to the end. I have learned to let others help me when I need it most. I have also realized that I didn't lose faith or not know what faith was or what it meant, I just forgot where I put it. Now that I have found it again I know that I have been truly blessed by God. He has chosen my family to go through this so we can do the things listed above. Mike has told me that your parents don't take you to church to learn the bible, they take you there to plant the seed so you know where to turn when the time arises. I have faith in God and I know he will see us through this.
Now that we have Livie's surgery scheduled for 03.16.11, I can relax a little bit between now and then. That was my plan anyway. I looked at the calendar today and cannot believe that it is already 01.21.11. Where has this month gone? I can't help but worry now. In two months Livie will have had her surgery and we will probably be on our way home. Since this is a major surgery her recovery period will be 4-6 weeks. I plan on being off with her for the first 3 weeks and then after that my sister, Brooke will come up and stay with her for the next week maybe 2 if needed. The time I take off will be unpaid. I am a little nervous about not having an income during those weeks but believe we can survive anything at this point!
Mike recently accepted a position with Applebee's. We are so thankful that he has found a job in this economy. Thank you for all the prayers and support! Keep them coming, God is listening! It is not the pay that we were hoping for but, it is something. I am so happy that he has found this job, I do believe that being a stay at home dad was starting to wear on his nerves a little. He was nervous about starting back to work, I am sure that he will miss the girls and starting a new job is always a little nerve wracking.
Before you start reading the next paragraph I want to again say how thankful I am that my husband has a job and how thankful I am that it is with a company that cares about their employees. There just continues to be this list of concerns that I have even after he has gotten this job. I am sure that a lot of people would be in the same situation that we are in currently if the bread winner of the family was no longer employed. We had our budget set according to what we were making at the time. We didn't think about or I didn't think about, what would happen if Mike lost his job. That just wouldn't happen to us. Now our budget and bills are set for the other income that we lost, not for the income that we will have. How do we fix this? How do we fix our budget when we are still in the red? Do you still continue to pick and chose what bills to pay? When do you get ahead or is it just a continuous cycle and you don't?
We are doing what we can to save on things that we can control. We are able to manipulate our schedules so that the girls will only go to daycare for 2 days a week which is, $210/week. That saves us a considerable amount of money because if they had to go the full week it would cost us $430/week. We try not to spend additional money on groceries other than what we receive with WIC and Food stamps. It is just really hard to grasp everything that is going on and put all these things into perspective.
Through all of this I started questioning my faith and decided I may not even know the definition of faith. How could I have faith in something if I didn't know what faith was? Faith is the confident belief or trust in the truth or trustworthiness of a person, concept or thing, according to Wikipedia. I am supposed to have faith in God so I am supposed to have trust in him. This all makes sense and I can handle that. However, all this stems from the bible. How do we know that the bible is 100% correct and true? It was written by his followers and people that experienced him. But this is all just hear say continually being passed down. I don't know, maybe I am reading to much into it and making this harder than it needs to be. Or is this where my faith comes into play and I need to trust in it that it is true.
I was on my way home from work the other day and my mind wonders frequently, I began thinking about all the things that were happening in my life. It was so weird but at that very moment and I can even remember where I was when this happened I knew what I was supposed to do. People say that God has spoken to them and I always thought that those people are crazy but, I think he spoke to me too! I didn't hear a loud voice from up above I just started putting everything together. I was supposed to talk about our situation with other people. I am supposed to educate other people on Craniosynostosis because too many times it gets confused and diagnosed as Positional Plagiocephaly, flattened head. By the time the correct diagnosis is made it can have caused damaged or require more than one surgery. I am supposed to talk to people and let them know that it is OK to ask for help and receive help from others. Once our situation is resolved then I am to take what I have learned through all of this and pay it forward. I am to help others by setting up benefits or fundraisers, donating my time or anything else I can do to help along the way.
I have found myself during our journey. I know that I am a strong woman that will fight to the end. I have learned to let others help me when I need it most. I have also realized that I didn't lose faith or not know what faith was or what it meant, I just forgot where I put it. Now that I have found it again I know that I have been truly blessed by God. He has chosen my family to go through this so we can do the things listed above. Mike has told me that your parents don't take you to church to learn the bible, they take you there to plant the seed so you know where to turn when the time arises. I have faith in God and I know he will see us through this.
Now that we have Livie's surgery scheduled for 03.16.11, I can relax a little bit between now and then. That was my plan anyway. I looked at the calendar today and cannot believe that it is already 01.21.11. Where has this month gone? I can't help but worry now. In two months Livie will have had her surgery and we will probably be on our way home. Since this is a major surgery her recovery period will be 4-6 weeks. I plan on being off with her for the first 3 weeks and then after that my sister, Brooke will come up and stay with her for the next week maybe 2 if needed. The time I take off will be unpaid. I am a little nervous about not having an income during those weeks but believe we can survive anything at this point!
Mike recently accepted a position with Applebee's. We are so thankful that he has found a job in this economy. Thank you for all the prayers and support! Keep them coming, God is listening! It is not the pay that we were hoping for but, it is something. I am so happy that he has found this job, I do believe that being a stay at home dad was starting to wear on his nerves a little. He was nervous about starting back to work, I am sure that he will miss the girls and starting a new job is always a little nerve wracking.
Before you start reading the next paragraph I want to again say how thankful I am that my husband has a job and how thankful I am that it is with a company that cares about their employees. There just continues to be this list of concerns that I have even after he has gotten this job. I am sure that a lot of people would be in the same situation that we are in currently if the bread winner of the family was no longer employed. We had our budget set according to what we were making at the time. We didn't think about or I didn't think about, what would happen if Mike lost his job. That just wouldn't happen to us. Now our budget and bills are set for the other income that we lost, not for the income that we will have. How do we fix this? How do we fix our budget when we are still in the red? Do you still continue to pick and chose what bills to pay? When do you get ahead or is it just a continuous cycle and you don't?
We are doing what we can to save on things that we can control. We are able to manipulate our schedules so that the girls will only go to daycare for 2 days a week which is, $210/week. That saves us a considerable amount of money because if they had to go the full week it would cost us $430/week. We try not to spend additional money on groceries other than what we receive with WIC and Food stamps. It is just really hard to grasp everything that is going on and put all these things into perspective.
Tuesday, January 18, 2011
Livie's Fund
I want to thank all of you for sharing your stories with me. It truly warms my heart to know that others have experienced situations like ours. Please continue to share your stories with me. I have been asked about a fund for Livie. There has been a fund set up for her through the Employees Credit Union in Estherville, IA. If you wish to donate please send to:
Employees Credit Union
C/O Livie's Fund
2714 Central Ave
Estherville, IA 51334
Thank you for all you help and support through this difficult time.
Lots of love,
The Rutter's
Employees Credit Union
C/O Livie's Fund
2714 Central Ave
Estherville, IA 51334
Thank you for all you help and support through this difficult time.
Lots of love,
The Rutter's
Monday, January 17, 2011
Asking For Help & Our Trip To Mayo
As I have stated in my previous blogs it was so hard to admit defeat. My family was out of money and I didn't know what to do. Thank God that I am like my father-in-law and forgot how many cans of beans I had in the pantry so I would buy one more can each time I went to the store. We had food to eat for a while and with my mom helping us my pantry stayed stocked.
I love my mom and enjoy the lengthy conversations that we have on a daily basis. I cried on her shoulder lots of days during this time. I would hear everything she was telling me but, I wasn't really listening. Finally, I started to listen.
I used to hear the words, state help, and just cringe. I wasn't ever going to have to be on Foodstamps or need state assistance. This type of assistance was for people too lazy to get a job and for people who prefer to sit at home and do nothing. I soon found myself at the WIC Office in Dakota County. Mike, me and all 3 girls were there for our appointment. You have to actually bring your children with you to prove that you have the children plus you need Social Security Cards for each of them. As I sat in the office looking around I was wondering how many of these people had been here before or if like me it was their first time. I would smile nervously at others or not make eye contact with them for fear they could see the embarassment on my face for having to ask for help. Mike and I were failures. We couldn't support our family. Here we sat in the WIC Office hoping they would be able to help us so we get some groceries. I wish I remembered the young ladies names that helped me that day. They were so nice and I am sure they could tell that I was very nervous about being there. WIC stands for, Women, Infants and Children. I was able to get help for myself and all the girls. We were now getting monthly assistance for food staples that you would find in everyone's fridge. Milk, cheese, eggs, bread, fruits and vegetables, cereal, and formula are among some of the things we could get at the grocery store. This was such a blessing for our family.
The first time I went through the line in the grocery store with my WIC checks I didn't know what I was doing. I of course went during the day when I didn't think there would be many people there, especially anyone that would recognize me. The lady checking me out was so nice and explained things to me. I told her that I didn't think that I would ever have to take advantage of these types of things but my husband had just lost his job. She looked right into my eyes and told me that, I shouldn't be embarassed and that I wasn't taking advantage of the program. The program is here for people who need the assistance. Be thankful that you have this. She wished this program would have been in place when she was raising her kids. Wow. I didn't know what to say other than, thank you.
Being on WIC has really helped our family a lot however, we were still falling short with all the bills coming in. I researched other things online that could maybe help us out. I came across the CAP Agency, Community Action Program. You could apply to receive heating assistance. I applied but, still have not heard back from them. I also found online information regarding food stamps. My next stop was St Paul, to see if we met the criteria to receive food stamps. We did and receive a small amount monthly in food stamps.
I still find it embarassing to admit that we are receiving this kind of assistance. I don't know if it is embarassing because we have had to swallow our pride or if it is because I feel as if we have somehow failed as parents. Either way it is hard and I cannot wait until we no longer need the assistance but, I can see how it is such a blessing for families in need.
The Tuesday before Thanksgiving we made our way to Rochester to learn more about Livie's condition and hopefully schedule her surgery. We first met with her plastic surgeon, Dr Clay. I don't know how fair it is that my 2 month old little girl has a plastic surgeon before I do. He is a southern gentlemen full of facts and charm. He was very matter of fact and told it like it is, which is why I think we will get along great! This part may get a little graphic so prepare yourself before you start reading the rest of this. This type of surgery they like to wait to do when the baby is 7-8 months but since Livie has a more severe case he wanted to do her surgery at 6 months. What he meant by severe I do not know and I am not certain that I want to know. The reason they wait until the children are a little older is because there is less of a chance that it will fuse again and they will have more of their own blood supply. She will however still need a blood transfusion. I really was hoping to have the surgery done sooner but, once he explained to me why they needed to wait I completely understood.
The surgery for Livie will take approximately 3-3 1/2 hours. There will be a Nero-surgeon in there with him during the surgery. They will cut Livie from ear to ear across the top of her head in a zig-zag pattern. This will help when her hair comes in, there will not be a permanent part like if you just cut straight across. They will then remove the area that was fused. I have signed paperwork for them to use this for research. I will be notified if they ever find a cure or an answer as to why this happens. As of right now there is no answer as to what causes this to happen. They will remove the front top part of her skull and set it on a table and reshape it. Dr Clay says that an infants skull is still malleable and they are able to reshape it quite easily. He will then have to reshape her eye sockets. They will place her forehead back on her skull in a sort of hinge fashion. They will use plates and screws but, these will all dissolve into new bone as her skull continues to grow. There will be a drainage tube when she first comes out of surgery and she will be in a pediatric ICU. Everything will peak at 48 hours post surgery. This is when she will look her worst from all the swelling. I was standing there holding Livie when he was talking about all of this and I thought I was going to vomit right there at his feet. He was talking about this like it was nothing but, he was going to be doing this to my baby. We had questions that he had all the answers to and made me feel comfortable. He has 5 children of his own and as I looked closer at his tie I noticed there were Mickey Mouse heads in a pattern that unless you looked closely would have never noticed. I found this cute and knew at that moment he was the doctor we were looking for. He told us to think about all we had been told and to let his office know if we had decided to go through him for the surgery. He wanted to make sure that we like him because we would be seeing him for the next 16 years. I apologized to him in advance and told him it appeared as though he was going to have to put up with us for the next 16 years and at times it would be all 5 of us! Her surgery is scheduled for
March 16, 2011.
I love my mom and enjoy the lengthy conversations that we have on a daily basis. I cried on her shoulder lots of days during this time. I would hear everything she was telling me but, I wasn't really listening. Finally, I started to listen.
I used to hear the words, state help, and just cringe. I wasn't ever going to have to be on Foodstamps or need state assistance. This type of assistance was for people too lazy to get a job and for people who prefer to sit at home and do nothing. I soon found myself at the WIC Office in Dakota County. Mike, me and all 3 girls were there for our appointment. You have to actually bring your children with you to prove that you have the children plus you need Social Security Cards for each of them. As I sat in the office looking around I was wondering how many of these people had been here before or if like me it was their first time. I would smile nervously at others or not make eye contact with them for fear they could see the embarassment on my face for having to ask for help. Mike and I were failures. We couldn't support our family. Here we sat in the WIC Office hoping they would be able to help us so we get some groceries. I wish I remembered the young ladies names that helped me that day. They were so nice and I am sure they could tell that I was very nervous about being there. WIC stands for, Women, Infants and Children. I was able to get help for myself and all the girls. We were now getting monthly assistance for food staples that you would find in everyone's fridge. Milk, cheese, eggs, bread, fruits and vegetables, cereal, and formula are among some of the things we could get at the grocery store. This was such a blessing for our family.
The first time I went through the line in the grocery store with my WIC checks I didn't know what I was doing. I of course went during the day when I didn't think there would be many people there, especially anyone that would recognize me. The lady checking me out was so nice and explained things to me. I told her that I didn't think that I would ever have to take advantage of these types of things but my husband had just lost his job. She looked right into my eyes and told me that, I shouldn't be embarassed and that I wasn't taking advantage of the program. The program is here for people who need the assistance. Be thankful that you have this. She wished this program would have been in place when she was raising her kids. Wow. I didn't know what to say other than, thank you.
Being on WIC has really helped our family a lot however, we were still falling short with all the bills coming in. I researched other things online that could maybe help us out. I came across the CAP Agency, Community Action Program. You could apply to receive heating assistance. I applied but, still have not heard back from them. I also found online information regarding food stamps. My next stop was St Paul, to see if we met the criteria to receive food stamps. We did and receive a small amount monthly in food stamps.
I still find it embarassing to admit that we are receiving this kind of assistance. I don't know if it is embarassing because we have had to swallow our pride or if it is because I feel as if we have somehow failed as parents. Either way it is hard and I cannot wait until we no longer need the assistance but, I can see how it is such a blessing for families in need.
The Tuesday before Thanksgiving we made our way to Rochester to learn more about Livie's condition and hopefully schedule her surgery. We first met with her plastic surgeon, Dr Clay. I don't know how fair it is that my 2 month old little girl has a plastic surgeon before I do. He is a southern gentlemen full of facts and charm. He was very matter of fact and told it like it is, which is why I think we will get along great! This part may get a little graphic so prepare yourself before you start reading the rest of this. This type of surgery they like to wait to do when the baby is 7-8 months but since Livie has a more severe case he wanted to do her surgery at 6 months. What he meant by severe I do not know and I am not certain that I want to know. The reason they wait until the children are a little older is because there is less of a chance that it will fuse again and they will have more of their own blood supply. She will however still need a blood transfusion. I really was hoping to have the surgery done sooner but, once he explained to me why they needed to wait I completely understood.
The surgery for Livie will take approximately 3-3 1/2 hours. There will be a Nero-surgeon in there with him during the surgery. They will cut Livie from ear to ear across the top of her head in a zig-zag pattern. This will help when her hair comes in, there will not be a permanent part like if you just cut straight across. They will then remove the area that was fused. I have signed paperwork for them to use this for research. I will be notified if they ever find a cure or an answer as to why this happens. As of right now there is no answer as to what causes this to happen. They will remove the front top part of her skull and set it on a table and reshape it. Dr Clay says that an infants skull is still malleable and they are able to reshape it quite easily. He will then have to reshape her eye sockets. They will place her forehead back on her skull in a sort of hinge fashion. They will use plates and screws but, these will all dissolve into new bone as her skull continues to grow. There will be a drainage tube when she first comes out of surgery and she will be in a pediatric ICU. Everything will peak at 48 hours post surgery. This is when she will look her worst from all the swelling. I was standing there holding Livie when he was talking about all of this and I thought I was going to vomit right there at his feet. He was talking about this like it was nothing but, he was going to be doing this to my baby. We had questions that he had all the answers to and made me feel comfortable. He has 5 children of his own and as I looked closer at his tie I noticed there were Mickey Mouse heads in a pattern that unless you looked closely would have never noticed. I found this cute and knew at that moment he was the doctor we were looking for. He told us to think about all we had been told and to let his office know if we had decided to go through him for the surgery. He wanted to make sure that we like him because we would be seeing him for the next 16 years. I apologized to him in advance and told him it appeared as though he was going to have to put up with us for the next 16 years and at times it would be all 5 of us! Her surgery is scheduled for
March 16, 2011.
Friday, January 14, 2011
I knew I had to do this....continued
We went to Rochester for the CT Scan and it was a piece of cake! Livie just laid there and sucked on her pacifier, she was such a good little girl. It took about 15 minutes and then we were headed home. We got the call from the doctor a few days later letting us know that she did indeed have Craniosynostosis. I had a million questions and unfortunately he had only seen this once before and didn't have any answers for me. I did know that the only way to correct the problem was having surgery. I figured that the doctor appointment with the neuro-surgeon and the plastic surgeon would be made right away and for sure thought that surgery would be in December. It was the second week in October and the doctor appointments were not until the week before Thanksgiving. What? That seems far too long to wait. I didn't understand why my baby wasn't a priority to them. Why would they want to wait so long?
I started researching online about her condition and what the surgery would be like. I made a promise to myself to only visit Mayo's website. I didn't want to get a bunch of false information from unreliable sources. I stuck to their website and got the facts. Craniosynostosis is a birth defect that in which one or more of the sutures between the bones of an infant's skull close prematurely, before an infants brain is fully formed. In a child who has this condition, the brain grows but the skull will not grow where the suture has closed. This results in an abnormal head shape. The cranial growth restrictions can result in increased cranial pressure which can cause vision problems and cause developmental delays. All of this information was overwhelming but, knowledge is power.
Two days later, it was a Friday and we were going to my parents for the weekend, Mike walked in the door. He was home early! I thought that was good then we could get on the road early. I finally asked him what he was doing home early. He had lost his job. I didn't think that I heard him right. I asked him the question again and received the same response. Tears started flowing down my face. I no longer knew if we were going to be OK. I didn't know if we as a family were going to be able to survive this. That was a big chunk of money that we just lost. I was only making half of what he made. I was currently on maternity leave and my baby was only 2 weeks old. My income was zero! What were we going to do? How were we going to pay the bills? What was going to happen to us? I didn't think things could get any worse. Then we got the call that the renters we had in our house in Michigan were moving out. Now we had an extra mortgage to pay. I didn't tell anyone for the longest time and a lot of you are probably hearing this for the first time. I didn't want anyone to know for fear they would think bad of us or think it was funny.
The support that we receive from our families is awesome! They are there for us emotionally as well as doing other things as they can. My mom helps out by buying us diapers and food for our shelves. Mike's parents sent some money. I say this with a humble heart, you find out who stands behind you when something like this happens. People call to see how you are doing and you want to cry and tell them everything but, what are you going to say? You should tell them the truth.....but, we don't. You also find out who has been there before. Whether it be through stories or gifts of money here and there. You knew the ones that helped had been in this situation and knew what we were going through.
There is a lesson here to be learned for all of us. First of all I didn't ask for help from anyone. I couldn't ask for help, I was so embarrassed to be in this situation. I was waiting for people to offer the help or ask how we were doing financially. I should have spoken up and asked for help we needed. Now that I have been going through this I know what it is like. I won't let others wait to be asked the questions that I so longed for someone to ask me. I won't wait to drop $10 in the mail to help them. Before, I didn't know what it was like to go through any of this. I didn't know what it was like to have doctor appointments all the time, to have medical bills pile up, to have your husband lose his job, to have all this fear built up inside you. I didn't know what it was like to wonder what bill you should pay and what one you thought would be OK to get behind on. I didn't know any of these things. Well, I do today and I can tell you that my life has changed. I will no longer walk around with my only focus being on me and my family. I am here to help other people. I am here to pay it forward. It doesn't have to be done with just money. I will pay it forward with a hot meal. I will offer to take the kids for the day. I will ask if they need financial help and I will be straight forward and let them know that I expect an honest answer. I will help with a benefit or fundraiser for them. I will educate people on the things that I have learned along the way and I will be there for support. I will do what I can.
I started researching online about her condition and what the surgery would be like. I made a promise to myself to only visit Mayo's website. I didn't want to get a bunch of false information from unreliable sources. I stuck to their website and got the facts. Craniosynostosis is a birth defect that in which one or more of the sutures between the bones of an infant's skull close prematurely, before an infants brain is fully formed. In a child who has this condition, the brain grows but the skull will not grow where the suture has closed. This results in an abnormal head shape. The cranial growth restrictions can result in increased cranial pressure which can cause vision problems and cause developmental delays. All of this information was overwhelming but, knowledge is power.
Two days later, it was a Friday and we were going to my parents for the weekend, Mike walked in the door. He was home early! I thought that was good then we could get on the road early. I finally asked him what he was doing home early. He had lost his job. I didn't think that I heard him right. I asked him the question again and received the same response. Tears started flowing down my face. I no longer knew if we were going to be OK. I didn't know if we as a family were going to be able to survive this. That was a big chunk of money that we just lost. I was only making half of what he made. I was currently on maternity leave and my baby was only 2 weeks old. My income was zero! What were we going to do? How were we going to pay the bills? What was going to happen to us? I didn't think things could get any worse. Then we got the call that the renters we had in our house in Michigan were moving out. Now we had an extra mortgage to pay. I didn't tell anyone for the longest time and a lot of you are probably hearing this for the first time. I didn't want anyone to know for fear they would think bad of us or think it was funny.
The support that we receive from our families is awesome! They are there for us emotionally as well as doing other things as they can. My mom helps out by buying us diapers and food for our shelves. Mike's parents sent some money. I say this with a humble heart, you find out who stands behind you when something like this happens. People call to see how you are doing and you want to cry and tell them everything but, what are you going to say? You should tell them the truth.....but, we don't. You also find out who has been there before. Whether it be through stories or gifts of money here and there. You knew the ones that helped had been in this situation and knew what we were going through.
There is a lesson here to be learned for all of us. First of all I didn't ask for help from anyone. I couldn't ask for help, I was so embarrassed to be in this situation. I was waiting for people to offer the help or ask how we were doing financially. I should have spoken up and asked for help we needed. Now that I have been going through this I know what it is like. I won't let others wait to be asked the questions that I so longed for someone to ask me. I won't wait to drop $10 in the mail to help them. Before, I didn't know what it was like to go through any of this. I didn't know what it was like to have doctor appointments all the time, to have medical bills pile up, to have your husband lose his job, to have all this fear built up inside you. I didn't know what it was like to wonder what bill you should pay and what one you thought would be OK to get behind on. I didn't know any of these things. Well, I do today and I can tell you that my life has changed. I will no longer walk around with my only focus being on me and my family. I am here to help other people. I am here to pay it forward. It doesn't have to be done with just money. I will pay it forward with a hot meal. I will offer to take the kids for the day. I will ask if they need financial help and I will be straight forward and let them know that I expect an honest answer. I will help with a benefit or fundraiser for them. I will educate people on the things that I have learned along the way and I will be there for support. I will do what I can.
Wednesday, January 12, 2011
I knew I had to do this....
As Livie lay there on the table the doctor starts examining her head and feeling it, even closing his eyes to really tune into what it was he was feeling. He looked at me and said, "You are right. It feels as though her skull has already fused on the rightside." What? What does that mean? I stopped listening to him at that point and all these things starting running through my head. I decided I best start listening to him again before I made myself panic. I did hear him say that he was not 100% sure and that only a 3-D CT Scan could tell for sure. He then asked me where we would like to go. I knew that he had a young daughter so, I asked him if this was happening to his family where would he take his daughter. He did not hesitate in the least and told me, Mayo. He also had an acquaintance there that just happened to be a neuro-surgeon. It was settled then, that is where we were going. The CT Scan was scheduled for the following week.
This next part of my blog is going to be painful for me to write about. I am going to tell it like it is and be completely honest with myself and everyone reading this.
I can remember sitting there holding her the days leading to her CT Scan wondering what it was that I had done wrong and if there was something that I could have done to prevent this. I started thinking about how we were happy with our 2 children and we had just decided that 2 was a good number and we were OK with that. I had started investigating gastric bypass surgery which my doctor had recommended to me due to my high cholesterol levels which are unfortunately hereditary. I felt like I was getting my life on track and having babies were behind me.
Being snowed in on the farm during Christmas, does not leave a lot to do so Mike stayed up and drank and played cards. We took a chance that night and definitely thought the odds were in our favor. I remember a month later high-fiving in the kitchen because I now knew there was no way I could be pregnant. The worry was over.
I started feeling sick, was nauseous and had heartburn. After a couple of weeks of feeling like crap I went to the doctor. She told me I had a stomach virus and sent me on my way,(She was very much pregnant herself which makes this even funnier). People started telling me that I was pregnant and I thought they were crazy, it was just a stomach virus, the doctor even said so herself. Over a month of feeling like this and having my daycare lady tell me that when she feels like this she is pregnant, I thought what the hell, I have a test I might as well use it. I took the test and by the time I got my pants pulled up I swear the second line was blinking bright fluorescent blue at me. Oh God! What the @#$%! That is really all I could keep saying. Mike wasn't answering his phone and didn't answer his page at work. I called my mom. She couldn't believe it, we just nervously laughed together and I could hear Brooke in the background yelling, "Mike is going to kill you!" Once Mike called me back, the second I picked up the phone I yelled, "I am PREGNANT! Explain that one to me!". We went back and forth for a couple seconds and then both started laughing. We weren't expecting it but agreed that it was meant to be or it wouldn't have happened.
I had a horrible pregnancy. Felt like crap until almost 25 weeks, had to go to the hospital for severe dehydration, preterm contractions forever and of course gestational diabetes. The hardest one I thought for me would be the diabetes but, it actually turned out to be the easiest. It was the preterm contractions I had all the time that were making me miserable.
As I sat in the recliner and held onto my gift from God all I could think was why would God do this to me? Was he punishing me because I was satisfied with 2 girls and wasn't necessarily thrilled to be pregnant and have a third child? Was it because I hated my pregnancy and didn't really bond with her while I carried her for 9 months. What if she could feel this as I hold her in my arms? Can she feel and does she know I wasn't necessarily thrilled to have her at first? What had I done? I kept all this bottled up inside for quite some time. I was now scared to hold her for fear she could feel these things radiating from my body. I kept telling her I loved her and was so sorry but, didn't know if that was helping. I started feeling like things could easily spin out of control and I had to get it together. I had to get things together not only for myself but for my entire family. It is so easy to plaster a smile on your face and pretend that everything is OK. I got used to that for a while. Finally I couldn't do it anymore.
This next part of my blog is going to be painful for me to write about. I am going to tell it like it is and be completely honest with myself and everyone reading this.
I can remember sitting there holding her the days leading to her CT Scan wondering what it was that I had done wrong and if there was something that I could have done to prevent this. I started thinking about how we were happy with our 2 children and we had just decided that 2 was a good number and we were OK with that. I had started investigating gastric bypass surgery which my doctor had recommended to me due to my high cholesterol levels which are unfortunately hereditary. I felt like I was getting my life on track and having babies were behind me.
Being snowed in on the farm during Christmas, does not leave a lot to do so Mike stayed up and drank and played cards. We took a chance that night and definitely thought the odds were in our favor. I remember a month later high-fiving in the kitchen because I now knew there was no way I could be pregnant. The worry was over.
I started feeling sick, was nauseous and had heartburn. After a couple of weeks of feeling like crap I went to the doctor. She told me I had a stomach virus and sent me on my way,(She was very much pregnant herself which makes this even funnier). People started telling me that I was pregnant and I thought they were crazy, it was just a stomach virus, the doctor even said so herself. Over a month of feeling like this and having my daycare lady tell me that when she feels like this she is pregnant, I thought what the hell, I have a test I might as well use it. I took the test and by the time I got my pants pulled up I swear the second line was blinking bright fluorescent blue at me. Oh God! What the @#$%! That is really all I could keep saying. Mike wasn't answering his phone and didn't answer his page at work. I called my mom. She couldn't believe it, we just nervously laughed together and I could hear Brooke in the background yelling, "Mike is going to kill you!" Once Mike called me back, the second I picked up the phone I yelled, "I am PREGNANT! Explain that one to me!". We went back and forth for a couple seconds and then both started laughing. We weren't expecting it but agreed that it was meant to be or it wouldn't have happened.
I had a horrible pregnancy. Felt like crap until almost 25 weeks, had to go to the hospital for severe dehydration, preterm contractions forever and of course gestational diabetes. The hardest one I thought for me would be the diabetes but, it actually turned out to be the easiest. It was the preterm contractions I had all the time that were making me miserable.
As I sat in the recliner and held onto my gift from God all I could think was why would God do this to me? Was he punishing me because I was satisfied with 2 girls and wasn't necessarily thrilled to be pregnant and have a third child? Was it because I hated my pregnancy and didn't really bond with her while I carried her for 9 months. What if she could feel this as I hold her in my arms? Can she feel and does she know I wasn't necessarily thrilled to have her at first? What had I done? I kept all this bottled up inside for quite some time. I was now scared to hold her for fear she could feel these things radiating from my body. I kept telling her I loved her and was so sorry but, didn't know if that was helping. I started feeling like things could easily spin out of control and I had to get it together. I had to get things together not only for myself but for my entire family. It is so easy to plaster a smile on your face and pretend that everything is OK. I got used to that for a while. Finally I couldn't do it anymore.
Subscribe to:
Posts (Atom)