Thursday, December 27, 2012

Happiest baby EVER!!


I am so in love with this little boy, You don't even know!! He has the cutest laugh in the world.

Crue Bug!

Sorry it's been awhile since I've updated. There hasn't been much to update about. Crue has been doing great!! He is the happiest baby ever, and he has the sweetest spirit about him! I am so blessed to have 2 amazing little boys in my life. We go back to spina bifida clinic next month and I will have more to update on, but until then here are a few pics! 














Saturday, October 20, 2012

There and back

The past few days have been pretty hectic. It all started early Sunday morning when Crue spiked a fever of 103. Joe and I immediately called the after hours clinic. They told us as long as he's not vomiting and doesn't seem to be in any pain to just bring him in around 10:00 when the clinic opens. So we take him in at 10 and they did a urine test and drew some blood and both came back normal. The doc said she wanted to do a culture on them to see if they grew any bacteria, but that it would take up to 24-36 hours before they knew anything. In the mean time she wanted us to go up to Primary Children's to have him looked at. We got up there around 3 pm and were checked into a room in the infant unit. They got him hooked up to an IV and drew some more blood, and also took some spinal fluid from his shunt so they could test it to make sure there wasn't any bacteria growing. They told us that it could be anything from spinal meningitis to a UTI. They came back with the results and said that his white blood cell count was high and he had high protein in his spinal fluid, but there was no sign of infection anywhere. They wanted to keep us there for a couple days while the got the results from the culture on his urine. So after 2 and a half days, 13 pokes, a CT scan, and an MRI the result came down to a urinary tract infection. All that testing for a UTI...are you kidding me...don't get me wrong, I'm very grateful that they did everything to rule out anything major, but my poor baby boy went through a lot for just a UTI. He was a trooper though, he was such a happy guy through it all.




 This is what he thinks about this place!

And happy to be home!!

Monday, October 1, 2012

A much needed update

Wow! It's been way to long since I last updated. Things have slowed down a bit for us and its just been so nice to have some quite family time together. Crue had his first spina bifida clinic a couple weeks ago, and everything went great. Spina bifida clinic is basically one long doctors appointment where we sit in one room and a bunch of doctors circulate through and see how Crue is doing. He was seen by neurology, orthopedics, plastic surgery, physical therapy, and a dietitian. Here's a brief update of what they said.

Neurology said his shunt looks awesome and is working well.

Orthopedics came in to look at his legs and feet. They said his femur had healed up awesome and things were looking good. As for his clubbed feet they said they wanted to wait until he's about 9 to 12 month before they fix them. They said they wanted him to be about the age that he should be standing/walking to help prevent them from turning back in. Usually they do a series of cast to fix clubbed feet but they said Crue's are so clubbed that they will have to do surgery to fix them....Yay, another surgery...that's me being sarcastic by the way! Poor guy has had enough surgeries, I hate to see him go through another one.

Plastic surgery said his back looked great and all of his incisions were healing very well. There is some skin discoloration on his back from his opening but they said that is normal and will go away over time. He did have a small infection on his stomach from one of his stitches that didn't dissolve like it was supposed to, so he was put on an anti-biotic and it went away.

Physical therapy came in and said that his legs were ready for some light stretching exercises to loosen up the muscles. They also have us doing a lot of tummy time to strengthen his neck, and they have us laying him on his side so he can practice moving from his side to his back. Pretty basic stuff as of right now being that he's only 2 months old!

Dietitian said that as of right now there wasn't much that needed to be done, obviously because he is only 2 months old and only eats breast milk! They will check back as he gets closer to eating solids.

That pretty much sums it up!! He is doing great and he is such a happy little guy! We are truly blessed to have him in our lives. He is just the cutest little fart you'll ever see!



















Sunday, August 5, 2012

When it rains it pours

First off I just want to warn you this is quite a story. It begins last monday when I went to primary childrens for a check-up on Crue's head. They did an ultrasound and found that the fluid had grown in his head and it was time for the shunt. It was scheduled for 7:30 the next morning. They also discovered that he had thrush so the plan was for me to go to his pediatrician to get it checked before surgery. When I got home I noticed that his left thigh had become swollen and red. So away to the pediatrician I go and of course, I get a flat tire on the way. What else could go wrong? I call Joe bawling and he came from work to rescue me. Finally getting to the doctor 30 minutes late he gives us a prescription for Crue's thrush and can't decide what is wrong with his leg so he advises us to head back to primary childrens and get him checked into the ER to see what the problem is and see if he can actually go for surgery or not. So home we go to pack our bags and head for Salt Lake. By this time it is 7:00 and we were supposed to be checked into the Ronald Mcdonald House by 630. By the time we get checked in and get to the ER its 10. They evaluate Crue's leg and decide to do an x-ray. We were completely shocked when the x rays came back and we were told that his left femur was broken. Then we were told that the trauma team needed to come meet with us, they had a few questions they needed to ask...at this point we were hysterical. How in the heck is my 2 week old sons leg broken and why are we being questioned for it? We felt as if they were accusing us for his leg being broken. We were told it is just mandatory but it still makes you feel like a criminal. After about 2 hours (2 a.m) of sitting in the ER and about 6 needles going in my poor baby boys arm we were sent up to the infant unit to get some rest before his surgery at 7:30 that morning. At about 6 a.m. the docs came in and got him all prepped and he was sent down to the OR. We sat in the waiting room for about 2 hours (which felt like a lifetime) before we were finally called down to the recovery room. Dr. K (the neurosurgeon) said everything went beautifully. I was so relieved to have my baby boy back in my arms, I was so grateful that everything went well. We were sent back up to our room and a few hours later the trauma team came in and asked us to go with them to the conference room to have a talk. They asked us a number of questions about Crue, and about his care at the NICU and if there were any signs of miss care at the hospital. Joe and I were at a loss, we had no idea how this could have happened. Everyone at the NICU had treated us awesome, we had no answers. Well after about 20 minutes of questioning we were told that there were a number of smaller fractures in both legs along with his broken femur. They told us that the ultrasound shows that the breaks old and that new bone had already started to grow back which takes 7 to 12 days. That meant that it happened sometime between birth and the day before we went home…we were shocked. Why was this happening to our poor little guy. How is it that they didn't know his legs were broken? Why wasn't our doctor more careful when she was delivering him? They knew before they took us in the conference room that his legs were broken before we even took him home, yet they still questioned us. We were so emotionally and physically drained by this point, and we couldn't help but be angry with everything that was going on. We were then told that they wanted to do some tests on him to see if he had any kind of bone disease that would cause his bones to break easy. So the next day we met with a genetics counselor and they took some labs on baby Crue…poor guy was poked again 3 times :( Everything came back normal and the genetics counselor said he doesn't see anything that would indicate any kind of bone disorder...few. Talk about stressful. Next they came to put Crue's harness on. The harness is the best option for his broken legs. It is a pain when it comes to changing diapers and clothes but they said it is better than a cast. Supposably his legs will be healed in 2-3 weeks! Pretty crazy knowing he has a broken femur! Oh and I almost forgot to mention the awesome people we had to share a room with...They were delightful!! They were in there with their little boy who had several broken bones and had to have a feeding tube. well during our stay with them we heard a lot of F words and quite a few outburst from the mother. Come to find out the hospital had called CPS on her and she was having her baby taken away. I'm not passing judgment or anything, but in the short amount of time that I was around her she seemed a bit crazy. To say the least it was an eventful 2 days in the hospital but we are home now and we couldn't be happier. Here are a few pics...the orange stuff all over him is iodine from surgery...just fyi. The first thing we thought of was his red hair like Easton's!




This is the harness for his poor leg




Saturday, July 28, 2012

We're home!!!

We are finally home! We got to come home on Thursday and we couldn't be happier. It was a bitter sweet day when they said we were able to come home. We were so excited but scared to death. They sent Crue home without a shunt which made us really nervous. We were told to watch for signs of him needing one. The signs we need to watch for are if he is inconsolably crying or not eating, or excessively throwing up. We also need to keep an eye on his soft spot, if it becomes hard or bulges out we need to take him in immediately. This is what made us so nervous...we were told that he will need a shunt soon, but as of right now he seems to be doing fine. The fluid in his ventricles is on the high side but they want to wait until he shows sign of needing a shunt. They said the longer he can go and the more he can grow the better. They want him to be as strong as he possibly can be before going in for surgery. We hope and pray that when the time comes for a shunt that he will be strong and everything will go perfectly! We are so grateful for this amazing little boy, he has already changed our lives so much.