Just Pray On It

March 28, 2011
*My Pumpkin*

I will just start this post by saying that, since the last meeting with the doctors who said we 'may be going home in 3 weeks', any desats are like a blow to the face. I'm going to simply say she had one while we were there today...while I was looking right at her, talking to her, my baby turned severely pale and blue.. and then the nurse jumped over a garbage can, ran over and suctioned a bunch of crap out of her nostril. No mother should experience that . .. ever. EVER. (or father, sorry babe.. I was speaking from perspective)

This afternoon, Nic and I met my mother in San Fran at the BART station and dropped her off because my mom wanted to have her for the week since she's got surgery next week on her shoulder. (my mom does) We dropped her off this afternoon and then went straight to the hospital.and headed directly up to the hospital. I have to admit, it was a both very weird and slightly less stressful not having Juliette to deal with while going to the hospital. It was weird in that she is a staple in my,our, lives. She's like my little buddy. She's definitely daddy's little buddy. But, it was nice that I didn't have to redirect her several times, see any tantrums, play I Spy the entire bus ride and so forth. I definitely miss my little buddy though :-/

When we got upstairs there were a bunch of people, doctors, chairs in the room. We met the current nurse and said hello, washed up and went to see her. Nic changed her diaper and I asked the nurse why her heartrate seemed high - it was upper 170s. She said it had been in the 170s and 180s all day. I told her that wasn't normal for her so she must be having discomfort. I told her I wanted her to have some pain medicine. Nic agrees and says its only been a week since the surgery so it could hurt still. As I sit here now I have the thought that I want them to check her Central Line. This is probably because the nurse tonight kinda freaked me (maybe us both) out by saying that the Central Lines (which go close to the heart) get infected all the time. Nic told her that we were told they were better for her to have.. she proceeded to tell us about how delicate they are and susceptible to infection. (NOTE: I called while typing this: I asked if her heartrate is higher due to possible infection in the Central Line.. they assured me no. There are many other things that would be going on if there were an infection. I'm satisfied that isnt the cause. However, the heartrate is now only 165. I told the nurse I feel its becuse we gave her the Tyenol. *hint hint Lady.. hint hint*)

Speaking of which - Nic gave her the Tylenol suppository, without gloves, and held it for the 3 minutes it takes to dissolve. Like she did to the nurse, Mel, the other day, our sweetheart proceeded to poop on daddys finger. (::Insert Hysterical Laughter Here::)

While daddy went to wipe off the poo.. I got in there and finished changing her. This involves wiping out all of her many crevices. She has some swelling in her upper, inner thighs and has alot of little rolls in there. So we have to wipe them out really good to prevent build up or infection on the skin. I changed her, and had just begun to slip the other diaper under her bum when she pooped on her outfit. SO, then I had to clean her up again, rub her down with baby lotion (more like massage her) and then take off the outfit. It takes two people to change her (well for us) as one of us holds her up, the other takes out the dirty outfit, slips the new one under her on top of her open harness and then we can get her dressed. We have to position the outfit right, the harness, the diaper.. etc. It's quite the ordeal with all of the wires, tubes, the G-Tube and everything else, but then, VOILA, she's dressed.

Besides the desat I opened with (sorry about that opening everybody), she was great tonight. We both got to hold her for quite awhile, and just bask in th the Cayleighness. I was praying with her and it came to me that instead of praying that she suck and swallow - I will pray that she have a stronger swallow, stronger muscles and be able to handle the spit all on her own.

Praise here - the G-Tube site is looking better than it was. The nurse, however, scared me a bit. She told me that she hadn't changed it because there wasn't any leaking of food. I asked her 'well, what about the green stuff?" She looked worried. Green stuff? She quickly changed the pad and there was green stuff. It was really easy to clean (says daddy) and wasn't as thick or puss looking like the previous stuff. The redness is less angry red and more pink red. I'm very grateful for this.

Also, the really bad baby acne/rash thing looks like its going away on its own as well.

Please pray for our sweet Cayleigh, for us and for our family. Thank you all for continuing to read, continuing to pray and continuing to be so wonderful.