Well after a long wait her test results are in. She has muscle to have the surgery!! We meet with her surgeon in March to schedule her second surgery. We also found that her tethered cord means that her spinal cord is attached to the bone. So we meet with a Nero surgeon to decide when she can get that separated. Also, we found out she has VACTERL syndrome. This stands for...
Monday, January 3, 2011
After a lot of doctor visits we have made it to the day that will decide it all. We are awaiting the test results of Skyleigh's MRI and VCUG. They had to see if she has an muscle to work with to do her first surgery. The tests started at noon today. She first had a vcug which is where they put water in her bladder to see if it is going into her kidneys. I also believe this test was to find out where the fistula was located. That is where there is some kind of hole that was letting the stool come out her pee originally. Then she went on to the MRI. She had to be sedated for that test. The test took her two hours. She was then moved to a recovery room where she waiting to wake up. After that they moved us into a room to monitor her breathing for 12 hours. She has been really sick from the meds they gave her and has thrown up all over the place. As of now she is sleeping peacefully. We await the wound team in the morning to look at her stoma and the test results. Wish us luck......... to be granted with the opportunity to have surgery would be amazing. I really want Skyleigh to have the opportunity for the most NORMAL life she can.
Today is the day we got to take Skyleigh home!!! Yay! After spending two and a half weeks in the NICU they decided to let her go home. She only weighed 3lbs 10oz. One of the nurses there told us she is the smallest baby she has seen go home in 15yrs. They pretty much told us that she was doing so amazing and they could no longer keep her there. She would do a much better job at growing and eating at home. What a wonderful day to actually get to hold your baby with no wires or monitors on her. It was a long night..... but well worth it.
The day after Skyleigh was born they realized something was wrong. She was throwing up a lot and had only passed a very little amount of stool. They thought that she had some kind of blockage and ordered some x-rays to find out. After doing them they found out that she had something else majorly wrong and took her away to primary children's hospital. They found out she has an inperforate anus. What that basically means is that she does not have an actual bum hole to go to the bathroom. They had also found a little hole in her heart and a few vertebrae in her lower back are disfigured. So, to fix the bum problem for now she got a colostomy bag surgery at two days old. The hole in her heart fixed itself. Then the lower back stuff is just kind of a waiting game. They said worse case is that she could be paralyzed or have some type of nerve damage. They also said that it can just work itself out and she could be just fine. But until then she is stuck in the nicu at Primary Children's until she can get bigger and start growing.
At 4:52 pm Skyleigh Jo Bills arrived into this world weighing 3lbs 1oz and measuring 14 inches long. It was a scary and wonderful moment all wrapped up in one. She came out screaming at the top of her lungs. Wonderful thing hearing her cry..... considering she was 6 weeks early!!
Ok........ so where to begin?!? There has been a lot of things happen since my last blog post. I had a really rough pregnancy with Skyleigh. Which led to a lot of bed rest and tests. I was on a weekly non stress test to monitor her. Which then turned into a twice a week test when they noticed her abdomen was not growing anymore. Then when I was at one of the non stress test my blood pressure was extremely high...... so I was put on complete strict bed rest. Then I was to have a follow up visit with my normal OBGYN. I went into the appointment around 2pm......... where he said that I had a horrible case of preclampsia and would be delivering me in two hours. So away to the hospital we went to get prepped for a C section.
Monday, August 2, 2010
We decided to get away this weekend and go camping up our favorite American Fork Canyon. We went with Ariel, Ricky, Dom, Zach, Shayla, and Dana. They drove their cars up, so we stayed in a camping spot just off of the road. It was a pretty nice set back spot for being right off the road. It was fun to see Dominic have fun in the dirt! This was his first camping trip and I was happy to be part of it. I wish I would of brought my camera for some awesome pictures. Me and Cody went up to Miller's to check out the last cabin standing up there. It was a nice quite ride in the yota. It is sooo pretty up in there! We got out and carved all of our names in the tree... Cody, Stormy, Meese, and Feeb (boe). haha. It was a good time. But I think that I have had my feel of camping and being pregnant :0). The sleeping and getting comfy part really is starting to suck..... maybe part of it was the bear next to me. Regardless. I had a wonderful time up the canyon and it was a nice get away from reality.