Stupid desats

March 29, 2011
I think the title says it all.

Today was not such a great day. Well, it was a great day in that my precious baby girl is alive and the Lord has blessed us with her. Not such a great day in that she desated, 4 times, while Nic and I were there.

Her heartate was in the 180s, even getting up to 191, the nurse assures us this isn't due to any problems. She says it could be because of the antisecretion medicine. She's been on that medicine for awhile now and her heartrate hasn't been that high. I ask if it could be due to infection or a cold or something..she says no. Fine

She had desats throughout the day. None of them required more oxygen or the little mask (Praise the Lord) but 3 of them required suctioning. NO MOTHER SHOULD SEE HER BABY TURN BLUE. It makes me sick. It's SO beyond frustrating.

Anyhow, I don't really have alot to say. She's at 13 mls of feeds and this lady today didn't have her vented during her feeds like the nurse yesterday did. She did tell me she'd put "please have baby positioned in Boppy pillow" on the chart though, so that was nice.

I'm going to vent. The first time, Nic was holding her and I was talking to her. Suddenly I'm looking at her and her mouth, then cheeks turn blue. We suctioned her and she was ok. Then, not too long after she desated again. Then, I was holding her tonight and was praying (closing my eyes, talking into her ear) and I suddenly feel no movement. She wasn't breathing. I look at her and she's blue again, eyes rolling back. We suctioned her and she was ok. The final time, we just put her in the boppy and I was praying with her and she stopped moving (breathing) again. That time, I grabbed the suction thing and tried both nostrils but got nothing and she quickly recovered all on her own.

I'm not angry because I know in my heart God is in control.. but I could be angry, very easily. I am just really frustrated. I want her home... but I don't want to worry so much that I cannot, for even one second, take my eyes off of her. How would I take a shower? Go to the bathroom? Cook dinner? Drive in the car? *sigh*

Please pray that Cayleigh doesn't have anymore desats.
That her heartrate stay in a stable range (nearer to 160s)
The her oxygen level stay in the high 90's to 100
That she have control enough in her swallowing to rid herself of these secretions
That she be protected from getting sick in any way
That her G-tube site continue to heal, be less red, no discharge and that she handle her feeds well
That she have increased reflexes
Increased awareness
Increaed movement
Increased flexibility
and that she start to cry.

Please pray for Nic and I..not sure for what exactly, but patience, peace, sustaining, love, faith and positive attitudes come to mind.

We will have the kids coming to stay with us up at the Ronald McDonald house full-time and have them in the school at the hospital for an unknown amount of time. My mom has a cold, and since she can't handle the kids full-time we are going to be bringing them here. Please pray for a smooth transition and for wisdom in raising and disciplining these children.

Thank you all for continuing to pray. Please don't stop -ever.
here are some pictures

BTW. I will say that tonight, while I was holding her, she locked eyes with me for a short time. It was amazing.. AMAZING. :)