July 17, 2009 (post 1)

Friday, July 17, 2009 9:31 AM, EDT

One thing I highly recommend for mothers, especially of young children, are two CD's from Serene and Pearl from Above Rubies. Life can be hectic with little ones and you're trying to have a nice home that runs smoothly and then perhaps add in homeschooling on top of that. The music helped me keep things in perspective as I went about my hecticness. I've always tried to remind myself that their are seasons to our lives and to appreciate each season to it's fullest. I think of that during this time when my heart is torn. I want to be with my family and comfort my Virginia Pearl (7yo) and give her extra lovin' and help her stay comfortable with a broken collar bone. I want to snuggle with Dabney (almost 6) and hear him tell me how pretty I am like he likes to do every morning. I want to smell Weston (4) after he has a clean bath and see him sleep with his little bottom in the air and see him show me some of his new dancing or kung fu moves. I want to watch Avonlea (10) take care of Virginia and dote on her like a loving sister and have one of her drawings and hear one of her stories. I want to watch Jay (12) work with all the other children on the 10 commandments and teaching them Latin. I want to feel my husband's arms around me and have him pray with me and assure me that everything is going to be all right. And I want to be here with Geneva and love every second we spend together, getting to know her personality, reading the Bible with her, praying over her, fixing her hair and cheering her on as she makes progress...just cherishing our moments together.

Geneva was supposed to have her MRI last night at 7pm. I was concerned about the dye they use for the contrasting images. Girls with Turner Syndrome will often have kidney problems and the dye can be hard on them. However, I also wanted to have the MRI done before she was 8 weeks old because I didn't want her to have to be sedated for that testing. We want to know if there is a tumor causing the seizures but they appear to be managed right now and we were told the plan of action would be no different for the moment even if they did see a growth. I prayed and asked the Lord to not let it proceed if it wouldn't be the right time or unhealthy for her. As we pulled up to the MRI department, we were told the day shift didn't put Geneva in the schedule and we would have to come back in an hour. The problem with that is that I adjusted her feeding schedule so she would be snug as a bug at 7pm for the MRI. We didn't get back down there until after 8pm and by that time, she was rearin' to go and it was getting closer to time for her medicines and next feeding. Needless to say, she was squirmy. It wasn't long before the radiologist came out and said she wasn't going to proceed with the MRI because she didn't want to inject the dye in her and have her squirm and not get any good pictures just to have it repeated. Also she had just met the bare minimum level required that morning for kidney function and she didn't want to chance it. We should find out this morning what neurology said about what they saw. I've been told second hand that there was nothing that jumped out at everyone right away so we are thankful for that.

Since Geneva had to be transported and she couldn't quite stay off the oxygen, she had to be put on a tank whose smallest amount of oxygen was over 4 times the amount she was on before trying to wean her off. So, last night the nurse tried weaning her down to point 5. Now she is down to point 25 and the monitors keep beeping but I don't think she's dipped below 85%. She needs to stablilize again at that level and then try to get off completely.

Yesterday she was able to breastfeed and we were both so relieved to have that special bonding time. She was feeding okay on the "enriched" breastmilk before then. Well, now that she's had some of the good stuff, she is boycotting the bottle. It takes around 30 minutes for me to get 17cc in her whereas before she would get 60cc in less than 20 minutes. I put the bottle in her mouth and she spits it out because it doesn't taste good. One of the staff said tastebuds aren't developed yet and she shouldn't be able to taste it but that is clearly not true. I tried telling them I think she is burning more calories fighting me with the bottle than she is taking in! We are going to try seeing if she will take the bottle from the nurse at the next feeding at noon. Meanwhile, a supplemental nursing system has been ordered to see if she will take the formula while she is nursing. Jennifer, I may have tossed in the towel with the pumping by now if you wouldn't have encouraged me, along with Christine, Katherine and others. Thank you. I really am completely wiped out with pumping and bottles but I see an end in site. It might be several weeks yet but I do see an end. I was reminded that I'm not getting enough calories either. If all the above fails and we can't feed with a syringe, they want to put in a feeding tube.

Since she's still on oxygen, they can't remove her final IV. I hate to have it in there because of risk of infection but it's better than having to poke her every time for a blood draw. Poor baby. Since it's uncomfortable for her to nurse with that against my body, she's only nursing on one side until that is removed.

I'm excited to see my babies!!! Please pray for Virginia and all while they travel tomorrow. Virginia is taking Tylenol with codeine and rotating that with Motrin. Even between the two, she is still in so much pain that she has had on the same dress since Tuesday. She's getting sponge baths and fresh unmentionables but she can't even take off the dress. She said she is okay traveling in the car but that is going to be 12 hrs for her and I want her to be so careful and not hurt any more. If it hurt her to sit in the carseat then I would ask them all to stay home as I couldn't bear the thought of having her there with friends by herself while I saw the others but she insists she's okay. It's just walking and sleeping that hurts so we'll have them come and then get her a wheelchair while she comes to see us in the hospital. From what she and Harry are describing, it's hard to imagine that she will be healed in just about 2 1/2 more weeks but that is what we are being told.

Cherish your moments with those you love.