*Updates on Lilah*

We went in and had her chest xray on Tuesday. It has been the only test that has come back abnormal.... it said that she had what is called scattered subsegmental atelectasis which my dr explained to me is little spots of "sticky stuff" that are all over in her lungs that cause them to stick together. This is why she is breathings so shallow and quickly. The radiologist questioned if this was related to a viral illness but her bloodwork done the day before said all her counts were normal and that she didn't have a virus. I actually felt a little bit better knowing at least a little of what might be wrong. But her dr said since it was possibly due to a virus there was nothing else to do for her. HOW COULD THERE BE NOTHING ELSE TO DO??? SHE STOPS BREATHING!!

So Tuesday she was pretty tired from going to the dr then going to get the xray so she was pretty fussy all day, except when she was sleeping :) That night she was A LOT fussier than she had been and cried for almost 2 hrs :( I finally got her to sleep and about 12am her alarm went off and beeped only once... I ran in to check on her and it seemed like she was breathing but just very shallow so the machine might not have caught one of her breaths. So I watched her for a bit and checked her electrodes and went back to bed. A few hours later it went off again but this time it was beeping continually. I rushed in because I knew what the amount of beeping meant, she had stopped breathing again. When i got in there she was a dusky gray color so i started to pat her cheeks, wiggle her around, anything i could to arouse her and get her breathing again. She took a deep breath after a few seconds and then continued to sleep. I again watched her for a while and went back to bed. When her alarm sounds I always think the worst and to see my baby that gray color looking like there wasn't any life in her really is the scariest thing in the entire world. My biggest fear right now is that i will wake up one morning and she wont.

On Wednesday I worked so I went in (her dr is off the day I work) so i talked to one of the other drs there about what was going on. I was a complete mess. First off she was so surprised that Primary Children's didn't admit us the first time this happened and that not many tests as to why this was happening had been run. I am so frustrated with hearing "just wait and see" I want to know WHY! So this dr immediately thought it is necessary to run some more tests, finally i felt like maybe we could get some answers. Lilah goes in on the 14th to have an EEG done to see if she is having seizures without convulsions that could possibly be the cause and a Brain MRI on the 22nd to make sure its not an issue where her brain is not telling her to breath. Im really nervous about the MRI because due to her apnea spells they have to put her under general anesthesia. This means they have to intubate her and put her completely under to do the test instead of just sedating her. I really don't know how i feel about my 3 month old being put under. I know she will come out of it ok but there are always risks when doing that, especially with a baby of her age. If these come out normal there are like 3 other tests that will be ordered. I love her dr to pieces but i really feel like I'm just not getting anywhere so this other dr will be helping to coordinate her care.

Ive never thought of myself as a strong person... but i think I'm being thrown into that role rather quickly and I'm definitely not ready. i know i need to be for Lilah though. Children can sense your being upset or worried. This is one thing i really need to work on for her sake.