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...
She is so absolutely beautiful! And thank you for sharing the comforting thought about the atonement and our Savior. How true it is. Love and prayers from our house to yours -
ReplyDeleteAunt Brooke with no make up on!!! ha ha she is beautiful though and that's all that matters. Mom mentioned she might be coming home friday??? Fingers crossed =)
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