Hydrocephalus
When you have no where
else to turn, there is always hope !
When you have no where
else to turn, there is always hope !
When you have no where else to turn, there is always Hope!
My name is Kelley and I'm 33 and my daughter Madison is now 18 months old. Madison was born with Hydrocephalus which is fluid on the brain.
When I found out that I was pregnant on November 20,2006 it was the happiest and the scariest day of my life.
My husband and I had been trying for about seven years and no luck. I thought that it was to good to be true that I was finally going to have a baby.
On march 23,2006 my entire life had changed forever.I went for an ultrasound like I had before. As my Doctor was doing the ultrasound he seem to be looking at her brain a liitle to long. My son was with me so I didn't want to cause a big scene. So I asked my doctor calmly what was wrong. He said oh nothing I just want to see you back in two weeks instead so I can just look at things again. I knew some thing was wrong but I couldn't scare my son so I had let it go for now. When I got home I went into my bedroom and just cried I knew something was wrong. When my Husband called I told him something was wrong with the baby's brain. When I got off the phone with Jay my Doctor called and told me that he didn't want me to worry that the baby had a brain bleed but it can fix it's self.
Well Jay and I both went back to the Doctors to get another ultrasound done. It was confirmed my child had Hydrocephalus.
What in the world was Hydrocephalus and would my baby be ok? We went home and got on the internet, boy thats was a stupid thing to do. everything we were reading was saying that these babies die. From that point on I had to go the Doctors every two weeks. My Doctor said we would have to have the baby early and have to have a c-section. That was the last I wanted to hear.
The day finally had come to have Madison she was almost six weeks early. The Doctor said she would weigh around 5lbs or so.
I had never been so scared in my life to do anything as much as this. My Doctor said he didn't know if she would make or not. I just wanted my baby it didn't what was wrong with her. They started and everything seem to be going good,until I felt them jump on the table with me,and I felt this pian that I should of never felt. I had passed out at this point and when I came thru my husband was crying. I said oh God no!!! He said no he was crying beacuse they said they almost lost me.
Madison was born and she weighes 8/12lbs and 6 lbs of the weight was her head. They had never seen a baby born with that head size before. Thay told my husband that she wouldn't make it thru the night and if she did she would be brain dead. I had her at 12:07p.m. and I didn't get to see her until 10:30 that night. Some people were calling her the Ailien baby. When she was 2 days old they put a shunt in . The Doctor that did the surgery came out after he was done and as cold as can be and said that the surgery went well but it didn't really matter beacause she wouldn't make it. He said Madison had only a 10% total brain and that she would never be able to do anything. This was the worst day of my life. I'm going to loose my baby what am I going to do. I didn't care if she wouldn't do anything I just wanted to hold and keep her safe.
I never left my baby's side unless my husband stayed with her. I told myself I was not going to leave her incase something happen like they all said it would. I have 2 older children Kristie is now 15 and Zachary is 12 and they would also sing to her and read her books. The hospital has this place called the Hope house that we were allowed to stay at. It was like a hotel at the hospital it was great because every once in a while I would get a few hours of sleep while Jay stayed with her. I believe that Madison did as well as she did because we were able to be by her side all the time. Most of the Nurses thaught we were crazy because we wouldn't leave her side. I would just say to them are you telling anybody else that they are going to loose their baby at least three times a day. How can you ask me to leave her? If she was going to go to Heaven she was going with us by her side no matter how hard it was for us. It wasn't about what we wanted or how we felt any more. Everything we did we did for are baby. Well day after day she got stronger and stronger and we finally went home after 3 weeks. When we took her home they said that their was nothing else they could do for her. I was told that she would have a week or so to live.
The doctor that put in the shunt is no longer Madison's doctor. When she was 6 weeks old we took for a check up. When the Doctor came in he looked at her for 2 seconds and said everything was fine. I would try and ask him questions about Madison and he would blow me off. I told him that she had a stitch still left in her head from her surgery. He said it will fall out in time don't worry so much. Then the day before she turned 4 months, I told my husband that the stitch had went away and I was sure that it went in her down into her head. The next day she had therapy and her therapist said don't freak out Kelley but her head is bleeding. I called the Doctor's office right away and took her in there. As my husband and I were in the room waiting I heard him say what are they doing back. I just seen them yesterday and then he sighed. I was trying to tell him what had happen and he just shut me up and said their was no way that stitch went into her head. I told you it would fall out and it did. He told us that her was bleeding because she probably bumped it some where and with her head being so big that's going to happen. I said no that's not what happen and their is something wrong with her. He then told me fine we will just take the shunt out . I said I don't want the shunt out I want you do something. Then he said we just didn't want to acept the fact the our daughter would never do anything. I told him give me daughter and I would find a Doctor that knew what the hell he was doing.
We took Madison to Riley Hospital about 2 hours from us. We met with a wonderful Doctor named Dr. Boaz he was a god sent to us. He was so understanding and actually listen to us. He looked at her and said that something was wrong. On December 20th my daughter had to have a surgery to remove the stitch down in her head that wasn't there (lol). When he was done he came and told us that if I wouldn't have push the issue with her she would of ended up in the PICU with an external shunt for at least a month because it was getting that infected. So I have now learned to listen to my self when it comes to her. I know her better than anyone and no one will protect like I would. We have the best NS in the world as far as I'm concerned. The other Doctor now wants me to bring her back ,ya like would ever happen.
Well Madison is now 18 months old and the the love of my life. I would not me the same with out her. She can say 147 words,14 baby signs,can tell you where all her body parts are, and say 9 colors. Madison could feed her self at 6 months and started talking. At 8 months she was able to sit up by her self. Madison can now crawl and walk if you hold on to her. Soon she will be able to walk all by herself. We give her therapy 4 times a week. All the Doctors are now so amazed with her now. They say they don't undersatand why she does what she does? I told them she is God's baby and that why she does so well. Madison is my miracle and the best gift God has ever given me. I truly feel that I won the baby lottery.
I'm telling this story because I want to give other parents hope. I was given no hope by any of the Doctors. So I wanted to be able to share her story. God is great and is in control of our lives! With him we can do anything. I'm putting her newborn picture on here and Madison's picture of her now. I will keep you guys updated as I can.
When I found out that I was pregnant on November 20,2006 it was the happiest and the scariest day of my life.
My husband and I had been trying for about seven years and no luck. I thought that it was to good to be true that I was finally going to have a baby.
On march 23,2006 my entire life had changed forever.I went for an ultrasound like I had before. As my Doctor was doing the ultrasound he seem to be looking at her brain a liitle to long. My son was with me so I didn't want to cause a big scene. So I asked my doctor calmly what was wrong. He said oh nothing I just want to see you back in two weeks instead so I can just look at things again. I knew some thing was wrong but I couldn't scare my son so I had let it go for now. When I got home I went into my bedroom and just cried I knew something was wrong. When my Husband called I told him something was wrong with the baby's brain. When I got off the phone with Jay my Doctor called and told me that he didn't want me to worry that the baby had a brain bleed but it can fix it's self.
Well Jay and I both went back to the Doctors to get another ultrasound done. It was confirmed my child had Hydrocephalus.
What in the world was Hydrocephalus and would my baby be ok? We went home and got on the internet, boy thats was a stupid thing to do. everything we were reading was saying that these babies die. From that point on I had to go the Doctors every two weeks. My Doctor said we would have to have the baby early and have to have a c-section. That was the last I wanted to hear.
The day finally had come to have Madison she was almost six weeks early. The Doctor said she would weigh around 5lbs or so.
I had never been so scared in my life to do anything as much as this. My Doctor said he didn't know if she would make or not. I just wanted my baby it didn't what was wrong with her. They started and everything seem to be going good,until I felt them jump on the table with me,and I felt this pian that I should of never felt. I had passed out at this point and when I came thru my husband was crying. I said oh God no!!! He said no he was crying beacuse they said they almost lost me.
Madison was born and she weighes 8/12lbs and 6 lbs of the weight was her head. They had never seen a baby born with that head size before. Thay told my husband that she wouldn't make it thru the night and if she did she would be brain dead. I had her at 12:07p.m. and I didn't get to see her until 10:30 that night. Some people were calling her the Ailien baby. When she was 2 days old they put a shunt in . The Doctor that did the surgery came out after he was done and as cold as can be and said that the surgery went well but it didn't really matter beacause she wouldn't make it. He said Madison had only a 10% total brain and that she would never be able to do anything. This was the worst day of my life. I'm going to loose my baby what am I going to do. I didn't care if she wouldn't do anything I just wanted to hold and keep her safe.
I never left my baby's side unless my husband stayed with her. I told myself I was not going to leave her incase something happen like they all said it would. I have 2 older children Kristie is now 15 and Zachary is 12 and they would also sing to her and read her books. The hospital has this place called the Hope house that we were allowed to stay at. It was like a hotel at the hospital it was great because every once in a while I would get a few hours of sleep while Jay stayed with her. I believe that Madison did as well as she did because we were able to be by her side all the time. Most of the Nurses thaught we were crazy because we wouldn't leave her side. I would just say to them are you telling anybody else that they are going to loose their baby at least three times a day. How can you ask me to leave her? If she was going to go to Heaven she was going with us by her side no matter how hard it was for us. It wasn't about what we wanted or how we felt any more. Everything we did we did for are baby. Well day after day she got stronger and stronger and we finally went home after 3 weeks. When we took her home they said that their was nothing else they could do for her. I was told that she would have a week or so to live.
The doctor that put in the shunt is no longer Madison's doctor. When she was 6 weeks old we took for a check up. When the Doctor came in he looked at her for 2 seconds and said everything was fine. I would try and ask him questions about Madison and he would blow me off. I told him that she had a stitch still left in her head from her surgery. He said it will fall out in time don't worry so much. Then the day before she turned 4 months, I told my husband that the stitch had went away and I was sure that it went in her down into her head. The next day she had therapy and her therapist said don't freak out Kelley but her head is bleeding. I called the Doctor's office right away and took her in there. As my husband and I were in the room waiting I heard him say what are they doing back. I just seen them yesterday and then he sighed. I was trying to tell him what had happen and he just shut me up and said their was no way that stitch went into her head. I told you it would fall out and it did. He told us that her was bleeding because she probably bumped it some where and with her head being so big that's going to happen. I said no that's not what happen and their is something wrong with her. He then told me fine we will just take the shunt out . I said I don't want the shunt out I want you do something. Then he said we just didn't want to acept the fact the our daughter would never do anything. I told him give me daughter and I would find a Doctor that knew what the hell he was doing.
We took Madison to Riley Hospital about 2 hours from us. We met with a wonderful Doctor named Dr. Boaz he was a god sent to us. He was so understanding and actually listen to us. He looked at her and said that something was wrong. On December 20th my daughter had to have a surgery to remove the stitch down in her head that wasn't there (lol). When he was done he came and told us that if I wouldn't have push the issue with her she would of ended up in the PICU with an external shunt for at least a month because it was getting that infected. So I have now learned to listen to my self when it comes to her. I know her better than anyone and no one will protect like I would. We have the best NS in the world as far as I'm concerned. The other Doctor now wants me to bring her back ,ya like would ever happen.
Well Madison is now 18 months old and the the love of my life. I would not me the same with out her. She can say 147 words,14 baby signs,can tell you where all her body parts are, and say 9 colors. Madison could feed her self at 6 months and started talking. At 8 months she was able to sit up by her self. Madison can now crawl and walk if you hold on to her. Soon she will be able to walk all by herself. We give her therapy 4 times a week. All the Doctors are now so amazed with her now. They say they don't undersatand why she does what she does? I told them she is God's baby and that why she does so well. Madison is my miracle and the best gift God has ever given me. I truly feel that I won the baby lottery.
I'm telling this story because I want to give other parents hope. I was given no hope by any of the Doctors. So I wanted to be able to share her story. God is great and is in control of our lives! With him we can do anything. I'm putting her newborn picture on here and Madison's picture of her now. I will keep you guys updated as I can.
