This first paragraph was a note I wrote yesterday on facebook and thought I'd start by reposting it here and then add a few notes.
We're doing well. Cayla was a month old yesterday! Hard to believe, yet in some ways it seems like she should be 2 by now... I got more done by 10:30am yesterday than I did all day Wednesday. :o) I was able to make it to revival services at church last night! Very good. Worship is private. Worship is intimate. The results of intimacy with God are seen publicly by everyone we meet and lives are changed... Looking forward to a good day today. Trying to get the whole 3 hour schedule down. Her feeding times get done every 3 hours, but I can't seem to get much else done in between. Still adjusting. Oh, and she pulled her feeding tube out last night so we got the privilege to put a new one in all by ourselves with no nurses to help. It was stressful more emotionally than the actual difficulty of doing it. I realized I didn't get tape, so I need to ask for some today at Hillcrest. Thank you so much for all the prayers for us. I will try to post more later, but have to go get ready. God's been faithful!
Had a good Saturday. Lowell and Samuel took over and let me sleep more today! :o) They did dishes and took out all the trash, and Lowell cleaned up the dining room and living room... quite a feat when the dining room table was buried under a foot of hospital stuff that'd been dumped there. Plus Lowell attacked the room that has some leftover stuff from the store in it that I've been wanting to get to for months now. He almost has it cleared out. He so good!
Something's been bothering Cayla and making her cry at a moments notice and then working herself up into a frenzy. She's not allowed to do that because it sends her pulse ox down below 82 (amount of oxygen in her blood) and yes, that's really low and not good. For her, it should be between 82-85, not lower than 75 and not higher than 90. Plus it sends her heart rate up. So, I do believe she's going to end up slightly spoiled at the moment since we have to pick her up and calm her down. She has pretty much got to the place where she falls asleep in our arms. Not that I mind, but I do want her to sleep without being in someone's arms... which she does, but we're headed in the spoiled direction. Gave her some Tylenol this afternoon and she was like a whole new baby, smiling and no tears. We see the cardiologist Tuesday and will see if there's anything causing these outbursts.
She's just precious is all I can say. Well, not really, apparently I can say a whole lot more, but you know... Overall she's doing so well. She's gaining weight. I was able to get her weighed between taking the cast off and putting the new one on. She's up to 7 lbs 12 oz. Well, that was Tuesday morning. I'm sure she's more now. We get to go again Tuesday for another cast and weigh in and visits to the Cardio Pediatric nutritionist, Dr. Erenberg her cardiologist, and the doctor in endocrinology to see how she's doing with her calcium. She will be on calcium supplements the rest of her life. They are trying to adjust it to just what she needs. She currently takes about 5 and 1/2 tsps a day.
Looking forward to being back in church on Sunday morning! I've greatly enjoyed revival services this week even though I only made it Thurs. and Fri. Looking forward to hearing Dr. Roger Green tomorrow morning and evening! Love my church family and have missed them greatly! We were given clearance on Monday by her Drs. that Cayla can go out in public, obviously with caution. Lowell said that Cayla's doing so well, we might take her and take turns sitting with her through Sunday school and church. :o) We'll see. They cleared her to be able to go to daycare, so I figured church can't be too bad... Who could put a baby with so many needs at 4-5 weeks old in a daycare? Anyways.
Well, this is just a quick update. I feel bad I've not been able to write this week. Many things have happened that I want to remember, so I might try to back up and write more later. Have a blessed day in church tomorrow! :o)