APNEA

This is her new sleep apnea monitor.

I was in to the Pulmonologist earlier this week and mentioned that I've found her not breathing several times in the middle of the night. There have been a couple times I found it before I went to bed during my last minute check on the kids rounds. Other times I've shot awake from a sound sleep and found her. At one point I had to rouse her three times before she was in a light enough sleep to maintain consistent breathing. I've been semi-dismissed by some people that I told. I could tell they thought I was just being over reactive. I'm beyond paranoid and obviously not sleeping. The Pulmonologist said that's not a lung issue but a brain issue. One more problem to add to her list.

I'd be lying if I didn't admit I've wondered if the lack of oxygen for that two weeks followed by a continued lack of weight gain would be enough to hurt her little brain. I don't think apnea is from depleted oxygen or being skinny, but the thought has crossed my mind.

Last night was her first night using it; it went off F O U R times. The alarm is so loud it scared the the tar out of me...and her. Loud enough that it causes her to gasp and start breathing again.


All I have to say is...
I. AM. NOT. CRAZY.

Gabriel keeps calling Lynneah our Angel Baby. To be honest...it nags at me...makes me squirm...my stomach tightens up...and leaves me unsettled. I haven't said much to him about it. I have to bite my tongue to keep from biting his head off and telling him to "STOP IT!" He always says it with the sweetest look in those big chocolate brown eyes of his.

I continue to make lots of visits to different doctors. The x-ray last week looked good to me, but I'm not a Radiologist. I still haven't heard anything on her kidney ultrasound. No news is good news...right??? I was in for another weight check yesterday. Not good. She's just flat out not gaining what she should. As soon as school got out for the semester, I started pumping a minimum of two bottles a day, often three, to make sure I knew she was getting what she needed, in addition to good old fashioned nursing. Still minimal improvement at best. She's asleep or crying...all...day...long, often into the night hours too. Poor Gabriel is just about to freak out every night after clawing through all the reading he has to do with a crying baby sitting next to him. Reading is not any of our friend right now. It takes every ounce of power in that six year old body of his to concentrate long enough to read a page; her crying in his ear just might be his undoing. She continues to turn an eery (is that a word? my computer says no) shade of gray several times a day. She cries till she's exhausted and during the few minutes she's quiet her color is not good. I was back in to see the surgeon and he explained she has "1+" lungs (more than one but NOT two). That was an answer I could wrap my head around and digest. It explains the color issues. She just doesn't, and never will, have the oxygen reserve a normal kid does. It's fine for day to day living but not enough for things that require lots of exertion...like crying all day. He agreed that I should keep looking for the reason behind the crying. Often times it's that pain cry. I kept getting mad at the boys for hurting her till she did it one day and I saw there were no boys near her. Hopefully the pediatric GI specialist can help us find answers. The surgeon said it could very likely be a really bad case of acid reflux. It's a common issue with diaphragmatic hernias. He said if we can make it to a year it usually self corrects. If she just can't make it that long it'd be another surgery. :'( Right now we have her on prevacid ($50 bucks a month) and zantac ($10 bucks a month). I don't know that I see that they're helping a ton but it makes me feel better that at least I'm trying to help her. The pediatrician asked about the tons of congestion she has going on too. If it gets worse we may be visiting a pediatric lung specialist. When he mentioned that I actually had a very good feeling settle in my mind. I think there is more to her lung issues, but we'll start with the acid reflux route. Hopefully we can get some answers soon. In the meantime I'll cringe every time that sweet boy of ours calls her our Angel Baby.