Wednesday, April 7, 2010

Life Saver




We bought a swing a couple days ago and it has been great! We never had one with Paige and I never felt the need to buy one for her. She was really chill and content most of the time.

Kate is a good baby, but she definitely wants to be held 24/7. She is not content to just lay there and look around. So, thanks to this swing, I can get things done once in a while. :)

Friday, April 2, 2010

The other blog

I'm baaaaaaaack! Trying to lose weight again. For those who want to follow my weight loss blog, here it is.

Wednesday, March 31, 2010

Sisters


Kate's Blessing




We blessed Kate on Sunday and my mom and 3 sisters were able to come here to Spokane and visit over the weekend. It was so great having them here. I will post more pics later. Kate looked so sweet in her little dress and Nate did a great job giving her a blessing.

Thursday, March 25, 2010

Kate's Diagnosis

On Monday Kate had a liver scan done to see how everything is working. Then we met with the pediatric gastroenterologist on Tuesday to get the results. Based on blood tests and the liver scan, he found that Kate has Alpha-1 Antitrypsin Deficiency. It is a pretty rare genetic condition that puts her at a higher risk for liver and/or lung problems in the future. I guess both Nate and I are carriers for it, so we passed it on to her. We are going to meet with a genetic counselor and we will be tested to find out more about how we might pass it on to future children. Although, I don't think it would affect our decision to have more children. I found out that my cousin actually had a very severe case of this disorder and he had to have a liver transplant when he was 5 years old. The doctor told us that there is a pretty small chance that Kate would ever need a transplant. He has seen 40 or 50 children with AATD and only 1 had to have a liver transplant.

Many people with AATD are not diagnosed with it until they are adults and they start having lung problems. Infants and children who are diagnosed are more likely to have the liver problems. But generally, it seems like lung problems are much more common with this condition. There is no cure for it, and so far there aren't really any effective treatments available. The main things we can do for Kate are to make sure she is protected from cigarette smoke, pollutants, etc., and to keep an extra close watch for any infections, such as pneumonia, bronchitis, etc. Those things could cause her lungs to break down faster than an average person's lungs. She will also have blood tests and possibly ultrasounds every 6 months or so to monitor the condition.

We were definitely hoping to find out that everything was fine, or that whatever problem she had would just get better with time. I'm pretty bummed and stressed about all this. There are so many unknowns with this condition, which makes it really stressful. But from what I've read, it seems like many people who have this condition turn out just fine, or have mild symptoms. I'm just going to hope and pray for the best. That's all we can do.

This website explains the disorder if you want to learn about it.

Friday, March 19, 2010

Thursday, March 18, 2010

We're going home!

Kate and I will be leaving the NICU in the next hour or two. I am so relieved. We found out yesterday that all the tests for different infections came back negative. So all those IV antibiotics were for nothing, which is really frustrating. But I know the doctor was just trying to be safe. There are still a few test results pending and we have a couple appointments set up for next week. One is a procedure where they will do a scan of her liver functions and how bile travels through the ducts. That's where they think there may be a problem. So we should know if there is truly a problem by the end of next week. I hope there is nothing serious going on with her. Again, she seems perfectly healthy. The doctor and nurses keep saying that same thing. I look around the NICU and think, Kate does not belong here.

We're just glad to be finally taking her home and we're hoping for some good news next week. Or at least some not-so-bad news. That would manageable. Thanks again for your prayers!