It's time for an update

Tuesday, April 5, 2011
Cayleigh Jean is a Good Girl

Well, today has been an amazing day in what we pray is her continued road to total healing and success. She's been on a kick over the past 4 days where she has self recovered on desats/bradies and is just doing an increidble job.

This morning we dropped the kids off at their school & Juliette in the playroom and headed up to see Cayleigh. We find that she's been on bollus feeds since 9 am. Bollus feed is basically eating for a short period, then taking time off. This is basically how a baby would eat - you know, every 3 or 4 hours the baby eats for an hour or so and then they are done eating. So, now Cayleigh is 'eating' her feed over an hour and then she is taking 2 hours off. This means a bigger feeding at once, whereas before she was getting a small amount on a continuos basis over the entire day. We're really excited about this big step because it means she can be 'unattached' to the long tube thing and just have her little tummy plug when she isn't eating. More... portable. :)

So while we were there Daddy changed Cay's diaper (which had poopy, as always) and massaged her little edema areas on her upper thighs. He did her hamstring stretch and then put her harness back on. He also gave her meds as I pumped. then I measured out her feeding amount, 72 ml, put it in the hanging IV bag looking feeding bag, hung it, primed the line with milk to make sure it flowed properly, had the right drip and then I attached it to her tube, set the machine and started her feeding. By that time it was about noon and time to get the kids. How did we know it was noon? Because the playroom called like 3 times right on the dot - it was ridiculous, even the nurses said so. Relax dude, we're only a couple floors up and we're on the way - you aren't gonna starve.

We ate lunch and took the kids across the street to Starbucks where there is a large, brick patio in the front that wraps around the side. It was about 65 degrees outside and sunny, though windy, and we sat outside so mommys 'caffeine withdraw' headache could subside. Tayla read a book, daddy drank coffee and read the paper and the younger kids ran around. When we got back it was about time for the kids to go to the playroom so we dropped them off and went up to Cayleigh again.

I pumped while Nic changed her diaper for the second time today (and mentioned I owed one) and we just enjoyed seeing our girl. Nic did suction Cayleigh just for good measure but it wasnt necessary. While she slept Nic and I watched the infant CPR video and practiced on a dummy doll. 2 breaths, 30 pushes. The nurse gave us a little pocket guide because in a real emergency she tells us we'll forget. Nic and I decide we're putting signs up all over the place about all different things Cayleigh related from the amount of her feeds, to how often, to how to clean the site, what to do if XYZ happens and so on. You've got to be organized when you have a sick child.. you just have to.

Also - while we were up this afternoon Cayleigh was making her wincing face. Liz was standing cribside talking with us and then we heard it. Very brief, but definitely real. Cayleigh made a crying sound. Liz stayed nearby as we kind of watched to see what she did. She made more wincing faces and whatnot, and then two more times she made little noises. It was amazing. It is amazing. I'm very, very excited about this.

Please pray for Cayleigh - pray that she continue to be more alert, have increased flexibility, increased movement, that she cry, that she be vocal, that she be free from sickness or illness, full of peace, tolerate her feeds well, not need O2 or the nasal cannula and that she maintain her stable stats on her own. Thank you Lord for all of her improvements and thank you for her sweet little soul!

Please pray for our family, that we be free from illness - specifically colds, coughs, etc, that the kids be obedient, that they get along, that Nic and I be loving, full of peace, patience and that we be strict but kind.

Please also pray for my mother, father-in-law and husbands aunt as they fly out to Californie to see Cayleigh. That their travels be smooth, peaceful and safe.

Please also pray for my c-section incision as a part of it has re-opened on its own after it was healing. Pray that it be free from infection and that it heal on its own.

Finally, please pray that Cayleighs doctors and nurses have wisdom and compassion in caring for Cayleigh.

Thank you all for your prayers and for continuing to love and pray for our Cayleigh!