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Wednesday, April 13, 2011
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This morning Nic and I packed out all of our stuff at the Ronald McDonald house and headed to the hospital. Todsy was the day Cayleigh was coming home they'd told us. When we arrived at the hospital we found Cayleigh in her crib but her 'going home outfit' hadn't been put on her. We asked the nurse, who we'd never seen or met before, why she wasn't ready to go home just yet. She had this look on her face... she stumbled over her words and spoke quietly as she told us that, after not havin any Desats/Bradies over the last almost 2 weeks, Cayleigh had a low heartrate/low saturation last night. She said that the doctors would want to talk to us during rounds. My heart broke into a million pieces and I wept a bit. I walked over to the window and layed my head in my hands and prayed.

Shortly thereafter the doctors came over. They wanted to make sure we were ok with bringing her home and that we were comfortable. Nic was definitely comfortable, I tried to be.. though, inside, I was pretty uncomfortable.

I don't think anyone can be comfortable in the current situation we're in with Cayleigh. But as I type this I'm confident that this is only a current situation and nothing more. By the grace of God, and prayers from all of you, she will stops having desats altogether, she will not need the oxygen tube anymore and she will begin not only to suck and swallow but to eat, focus easily, have no more muscle contractions and be flexible and loose. I believe this can happen, i just need prayers . Alot of prayers.

So I'm not good at sharing my emotions and telling Nic how I'm feeling. Tonight I had a little breakdown. I told him I didn't know what was wrong or why I was crying. Instead I talked to Cayleigh through tears during her spongebath time. I told her that I was sorry. I was sorry because I didn't feel like I was strong enough to take care of her, that I was sorry because I felt like a bad mommy but then I looked at her, and she looked at me, and I told her just how much I loved her. I told her that I wasn't going to have post partum and that I was just having a meltdown. Its true though. I've had no time to cope.. and sometimes it all just creeps up and bites me in the butt. The emotions overwhelm me or I get worried.. so please definitely pray for me. I confessed to Cayleigh and I think she & I are good. :)

Cayleigh has, according to this machine which Nic and I aren't so sure about, had a couple of A&Bs today. Please pray that these STOP. In JESUS NAME. I don't know the right prayers to pray or words to speak but I would really, really, REALLY just like the episodes to STOP. Please ask the Lord to heal her from these so I can have some kind of sanity.


I've got a doctors appt tomorrow to finally get a 6 week checkup (8 weeks later). I had a part of my incision reopen and the doctors at UCSF called to tell me a culture came back with some kind of bacteria thing that casuess slow healing. I guess we find out more tomorrow. But this will be Cayleighs first trip 'out'. Please pray for a good, safe trip for all.

Please lift us up in prayers. The biggest thing is the A&Bs. That those END. STOP. NOW. everything else is icing on the cake

PS Cayleigh really enjoyed the Bay Bridge coming back... it was dark, then light, then dark, then light as we passed each little cement barrier thing. Her eyes were WIDE open and she was looking all over, moving her head to the left and the right. I've never seen that before in her. Very cool.