Our little girl has quite the personality. All of the nurses tell us that she has a mind of her own and when she wants something, she wants it right away. Can you stay STUBBORN!!! So with that said, the last couple of days she has made her mind up about a few things. She had a PICC line in her arm and they were going to take it out on Sunday but she decided she didn't want it anymore so her body "clotted" the line and they had to take the PICC line out on Saturday. So yesterday we went to the hospital and they told us that she hated her nose "feeding" tube and decided, for the second time, that she herself was going to pull it out. Little Miss decided to wrap the tube around her arm and pull the tube out with her fingers and arm. They were going to take it out the next day anyways. So, she has just decided to take things into her own hands and do things for the nurses. It is kind of comical.
Yesterday we found out that she is on PO feedings. That means that she decides when she wants to eat and how much. Boy will she let you know when she wants to eat and she will also let you know when she is done eating. She is a really good eater now she just needs to gain some weight.
Tuesday, June 28, 2011
Monday, June 27, 2011
Finally...
I finally am making time to update my blog. There is so much of the story to tell.
After the transfer to the NICU at Primary Children's Hospital (We just got the bill for over $1,000.) they did surgery on her on Saturday. They went in to find out exactly what was going on and make her a colon. When they got in to look at her they found that she had a few more problems then original thought. They found that she has two uteruses and two cervixes. This is a pretty common problem and they will most likely leave all of it alone. One set will most likely atrophy and not be useful anymore.
The second thing they found was heart defect. She has what is called a Double Outlet Right Ventricle. This means that both of her arteries are in the right ventricle. The normal heart has an artery in the left and right side. This is a problem that could be genetic. We have been working with genetics to find out if any of these problems are genetic and we will let you know soon. They will do surgery to correct this at around 6 months. We get to go to Primary Children's every month to have cardiology check on her. We will get to know Primary's really well.
The third thing they found is that she has a tethered cord. A tethered cord is when the spine is attached. The normal human's spine is free to move in the spinal column and hers is not. This is something that they will have to do surgery to fix. If they don't fix it, it will cause nerve damage and possibly paralyze her. They will try to do surgery for this around 2 years of age. If they do it know there is a chance it will reconnect and re-tether. So, they like to wait as long as possible so that re-tethering doesn't occur.
The fourth thing that they have found and hopefully the last is that she has a horseshoe kidney. This is extremely common and is found in 1 out of 400 people. What happened is both of her kidneys formed and then sometime during pregnancy they fused together and created a horseshoe kidney. This is something that is not fixable, they just watch her and treat the symptoms. She is more likely to have kidney stones and urinary tract infections.
She has a lot of problems but most of them are fixable. We will be living the next year of our lives at Primary Children's Hospital. She will have surgery on her heart at 6 months and then she will stay in CICU for a couple of weeks. She will then have surgery on her digestive system (bladder, vagina, and rectum) between 9 to 12 months and then will probably be in the PICU for a few weeks. Around 2 years old, they will then go in and fix her tethered spine. I am so thankful for modern medicine and the ability they have to fix all of these problems.
There are some amazing people that work at Primary's and we have become really close to them. We have made many friends and have had some amazing experiences. I want to thank "Uncle Rex," one of the NNPs, "Aunt Laurel," Madison's favorite nurse, Sara, another one of Madison's primary nurses, and many other doctors and nurses that have helped Madison, Colt, and I. We have seen many miracles happen and are so thankful for the gospel in our lives. There have been so many people ask me how I am getting through this with such a positive attitude and all I can say is that I have a Heavenly Father and Savior Jesus Christ who are helping Colt and me. We are so blessed to be members of the gospel and have the knowledge that we have of the atonement. We had a friend at the NICU give us a talk from the last general conference by Kent F. Richards called "The Atonement Covers All Pain" and a point that stuck out to both Colt and I is that the Savior had to suffer the atonement to come to know us and we have to suffer and go through trials so that we can come to know Him. I know that this has helped Colt and I get closer to our Savior. We have also realized that we are caring for one of his choice children and we are so blessed to be given the opportunity to be her parents here on earth. She is so precious and sweet and a HUGE blessing in our lives.
Now for the picture overload...
Madi doing what she loves most...sleeping!
Madi holding her daddy's hand
Mommy and Madi
Daddy and Madi
Aunt Brooke and Madison
After the transfer to the NICU at Primary Children's Hospital (We just got the bill for over $1,000.) they did surgery on her on Saturday. They went in to find out exactly what was going on and make her a colon. When they got in to look at her they found that she had a few more problems then original thought. They found that she has two uteruses and two cervixes. This is a pretty common problem and they will most likely leave all of it alone. One set will most likely atrophy and not be useful anymore.
The second thing they found was heart defect. She has what is called a Double Outlet Right Ventricle. This means that both of her arteries are in the right ventricle. The normal heart has an artery in the left and right side. This is a problem that could be genetic. We have been working with genetics to find out if any of these problems are genetic and we will let you know soon. They will do surgery to correct this at around 6 months. We get to go to Primary Children's every month to have cardiology check on her. We will get to know Primary's really well.
The third thing they found is that she has a tethered cord. A tethered cord is when the spine is attached. The normal human's spine is free to move in the spinal column and hers is not. This is something that they will have to do surgery to fix. If they don't fix it, it will cause nerve damage and possibly paralyze her. They will try to do surgery for this around 2 years of age. If they do it know there is a chance it will reconnect and re-tether. So, they like to wait as long as possible so that re-tethering doesn't occur.
The fourth thing that they have found and hopefully the last is that she has a horseshoe kidney. This is extremely common and is found in 1 out of 400 people. What happened is both of her kidneys formed and then sometime during pregnancy they fused together and created a horseshoe kidney. This is something that is not fixable, they just watch her and treat the symptoms. She is more likely to have kidney stones and urinary tract infections.
She has a lot of problems but most of them are fixable. We will be living the next year of our lives at Primary Children's Hospital. She will have surgery on her heart at 6 months and then she will stay in CICU for a couple of weeks. She will then have surgery on her digestive system (bladder, vagina, and rectum) between 9 to 12 months and then will probably be in the PICU for a few weeks. Around 2 years old, they will then go in and fix her tethered spine. I am so thankful for modern medicine and the ability they have to fix all of these problems.
There are some amazing people that work at Primary's and we have become really close to them. We have made many friends and have had some amazing experiences. I want to thank "Uncle Rex," one of the NNPs, "Aunt Laurel," Madison's favorite nurse, Sara, another one of Madison's primary nurses, and many other doctors and nurses that have helped Madison, Colt, and I. We have seen many miracles happen and are so thankful for the gospel in our lives. There have been so many people ask me how I am getting through this with such a positive attitude and all I can say is that I have a Heavenly Father and Savior Jesus Christ who are helping Colt and me. We are so blessed to be members of the gospel and have the knowledge that we have of the atonement. We had a friend at the NICU give us a talk from the last general conference by Kent F. Richards called "The Atonement Covers All Pain" and a point that stuck out to both Colt and I is that the Savior had to suffer the atonement to come to know us and we have to suffer and go through trials so that we can come to know Him. I know that this has helped Colt and I get closer to our Savior. We have also realized that we are caring for one of his choice children and we are so blessed to be given the opportunity to be her parents here on earth. She is so precious and sweet and a HUGE blessing in our lives.
Now for the picture overload...
Wednesday, June 22, 2011
Update...
I have a lot to say today but no time to update right now. Hopefully I will be able to finish our Little Madison's story soon!
Friday, June 17, 2011
The Start of an Amazing Adventure
We have been so blessed over the last couple of weeks. On May 31, 2011, my birthday of all days, we found out from an ultrasound that there was something wrong with our cute little girl. My doctor, Dr. Sumsion, noticed that Madi's "bladder" was enlarged and not emptying. He had never seen this before and sent us to the University of Utah Hospital for further treatment and diagnosis. We went down there for an ultrasound where we talked to Dr. Kennedy. She lets us know that Madison had something that she thought was a cloacal malformation. She said that we were 1 of 5 cases that the U of U hospital has seen. (It is a 1 in 4 million chance that they find this problem when the baby is in the womb!) Needless to say, we have been incredibly blessed. They recommended that I go get an MRI so they could further determine if that was the correct diagnosis. Well, it was!
Colt and I began to prepare, as best we could, for what was ahead. We had family fasts and many prayers in behalf of Madison and myself. We have seen many miracles come to past and we have been extremely blessed.
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Colt and I began to prepare, as best we could, for what was ahead. We had family fasts and many prayers in behalf of Madison and myself. We have seen many miracles come to past and we have been extremely blessed.
On June 10, 2011 the journey began. I woke up at 12:30 am with a backache. I thought I just needed to use the bathroom but that wasn't the case. I decided to go back to sleep because it wasn't too bad. I woke up again at 1:30 am and thought the same thing. Again, I went back to sleep. At 2:30 and 3:30 I woke up again. I called my mom and 3:30 in the morning because I didn't want to wake Colt if it was false labor. I told her what was going on and asked her what I should do. She told me that it sounded like labor in my back and I needed to go wake Colt so we could start timing the contractions. I woke Colt up and told him that we needed to go to the hospital. We left home at 4:00 am and headed to the hospital. I was timing the contractions, they were all in my back, and there were about 5 minutes apart. When we got to the hospital, they hooked me up to a machine and monitored me. I continued to have contractions 5 minutes apart and they wouldn't move forward. I asked the nurse and the resident doctor if they knew the circumstances and that I had to have a c-section. They said yes but they had to get a clear from my doctor. Well, at 8:00 am I received a phone call from my doctor's midwife about my schedule c-section for the following Thursday, June 16th. I explained that I was at the hospital and they keep pushing me back and can't get me in because labor and delivery is too full. Within 30 minutes my doctor was in my room and they were trying to get an operation room ready so that I could be started. Well, things finally started moving and at 12:07 pm we had our miracle here!
They immediately took Miss Madison to the U of U NICU and I was a little upset that I wouldn't get to see her before she was taken to Primary Childrens Hospital. Well, I was lucky enough to hold her first while I was in the recovery room. It was pretty incredible to hold my cute, amazing miracle for the first time. Until I felt like I was going to throw up...
Her life story begins in Primary Children's NICU.
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