A trip to the ER

Nicolas gave us quite a scare on Saturday night. It started as one of his usual scary fits that I have been talking about and progressed into a fit that wouldn't stop, and Nicholas going way to long without being able to move any air. We wrapped him up in blankets and rushed to the ER. It is the worst feeling in the world seeing your baby gasp for air and not be able to breathe. His eyes bulged and look frightened, he turned a grayish color, and was sweating profusely. By the time we reached the ER he was able to breathe again but was still retracting super hard and really working to breathe. The Doctors looked at him but couldn't really do anything for him. Our ER doesn't seem prepared for our tiny little patient. They were unable to get an accurate pulse ox on him the entire time. We didn't bring feeding supplies and had to rig something up to be able to feed him through his ng tube. It is obvious that we need to be closer to a children's hospital but Nick has been unable to find work in the areas we have looked. He took Monday and Tuesday off of work to help me with Nicolas in case of another episode. Unfortunately he had to go back to work this morning :( and of course.. you guessed it.. another episode. Thank God it didn't get as bad as the one that landed us in the ER, but it wasn't fun. The one today seemed to be related to him pooping his diaper. He isn't constipated but he has trouble actually pushing his poops out. The doctor said it has to do with lung capacity and not being able to push or something like that. He takes miralax daily to help him with that.

There is a great group of people I have met online who have children with CD like Nicolas. There are survivors, which gives us hope. It is really nice to be able to chat with them about medical issues and all of the challenges that go along with the diagnosis.

Our other children are doing well. Their Thanksgiving break starts today so they are happy to not have school for 5 days. Oliver is super excited for Thanksgiving, he loves holidays. He keeps saying " Thanksgiving is tomorrow right" lol...

I better go back to sleep while baby Nicolas is sleeping as I haven't slept much at all lately and am feeling run down. Oh and our church did the nicest thing for us, I will write about it tomorrow...

Three months old! update and pics

I have been stuck with the nickname of "P"!Short for peanut, I think it's because when everyone was saying how cute "Nicolas" is my dad thought they were talking about him!

Me and my mom

I cannot believe little Nicolas is three months old!!! He is starting to smile a lot and "talk" to us. It is so adorable when he gets happy because his little legs kick and his arms swing around. It's hard to say how he is doing health wise. He seems to be retracting more when he breathes, but his carbon dioxide levels haven't increased. He still cries a lot. Most of my time is spent trying to soothe him and once i finally get him to sleep i dont dare get up because if i do he wakes up and starts crying again and we have to start the process over again. I try and enjoy his little cuteness snuggled on my chest sleeping but it gets hard after awhile(8 hours) because i know there are so many things i should be doing. The only time my family gets a good hot meal is when my mother, who already has three jobs, cooks for us in her "spare" time! She is such a good cook and we all cheer when we see grannie pulling in the driveway. She brought us a wonderful meal last night, I had no idea she was coming until she walked into my bedroom, what's funny is Oliver was right behind her with a bowl of her beef stew already, saying how good it was. He must have been hungry! ;-) Our church was wonderful bringing meals for the fist couple of weeks too, my kids loved those ladies! When I do get a few moments free i try and comb my hair, wash bottles, pump, and straighten the house. I know that little pnut is the important thing right now but i also know i need to try and retain somewhat of a normal life for the other children. We have had to consider Nick quitting his job to stay home and help me. Financially that would be a nightmare but I am not sure how long I can do it on my own. As the crying spells are getting worse and the turning purple happening more frequently, it gets to be too much. It sure is nice when the weekend comes and there are two of us, even then we find there aren't enough hands and time to do what needs done.

We are scheduled to go to Seattle Dec. 8 and 9. I am getting a little nervous about traveling 10 hours with Nicolas. His crying fits are so scary and often lead to him turning purple and struggling for air. I have had to weigh the benefits of going against the cons and there is no good answer. It will be a horrible feeling being hours from anywhere with a baby in this condition. All we can do is pray that nothing tragic happens. The doctors feel that is is important he is seen there to see how he is doing.

We celebrated his 3 month birthday with a cake and new binkys! Please keep praying for his health and believing with us that he will be healed. Pray for wisdom for us, and peace. Pray for our other children who are dealing with the sadness of this as well as with us being consumed by the baby. Pray Nick would be able to find a job in Seattle or Phoenix, or anywhere that isn't ten hours away from a childrens hospital!

Thanks for checking in with us!! Love, Jenna