This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Friday, October 30, 2009

High Maintenance

According to the dictionary and Wikipedia, high-maintenance is defined/described as 'one who requires a lot of attention'. Boy is that an understatement! I can only surmise that it is related to separation anxiety, but these last 3 days have been the most trying of my motherhood. Scarlett is only happy if she is in my arms or I'm in her immediate vision. If I step away even for a second, she screams bloody murder (probably learned that from her 'terrible twos' sister Violet).

It's funny actually... tonight Todd was holding her and singing to her to calm her down, and she relaxed and was actually falling asleep. The very moment he stopped singing to her..within seconds, she was crying again arching her back and kicking and screaming. Then he'd start his little tune again...and she was instantly soothed again. Then when he'd think she was asleep, he'd stop singing, and on cue she'd start crying, screaming, and having a temper tantrum/fit as only an 8-month-old can. It was amazing to witness...(I wouldn't have believed it if I hadn't seen it with my own 2 eyes!)

I literally cannot put her down or she has a royal cow.  I don't mind holding her all day (walking, sitting, standing with her), but it is very hard to make her medicine/food syringes, check for ng tube placement, open bottles of Pedialyte, and do other things one-handed. [because she's in my other arm]. Here is a pic of the tools I use when I'm tube feeding her that need to be washed (one-handedly) after each tube feed...which is every 3 hours:

It wouldn't be that big a deal either if she wasn't tethered to the oxygen tank and I didn't only have about 6 feet of clearance. But that would be nothing if she wasn't a holy screaming terror for 18 hours a day. It is taxing on your nerves. I love her more than words can say, but sometimes even when I'm holding her...and she's changed, she's fed, she's warm, SHE'S STILL CRYING! I think to myself "Calgon Take Me Away!!". What happened to my adorable, calm, happy baby??  She was never like this before surgery. :(

Violet, on the other hand (her tyrannt two-yr-old sister), was a screaming terror from the second she was born and has never stopped. I'm already used to Violet being high maintenance, but my sweet little precious little, soft spoken little Scarlett..the one I refer to as my little Zen baby?... No, this is a first, we're talkin' major unchartered territory.

On a side-note...she barfed again at 3 am yesterday (24 hrs ago) when I had gotten her back to 100% breastmilk. So we backtracked a little and put her back on the 50/50 concoction. and she seems to be doing okay. Also tonight I offered her a bottle by mouth and she sucked it down like nothing (she drank it all up and very fast too). An hour or two later, we gave her another bottle and she drank that too. So far so good. No barfing yet. (knock on wood).

I even gave her Motrin and Lasix in a bottle and she drank it just fine. If she keeps up with this and continues to be barf-free, I have no problem pulling the feeding tube fairly soon! :) yay!

Also, I had lowered her oxygen to 1/16 from 1/8 yesterday. Then today when I was walking around the house with her, I had to unplug her from the tank..(like to go to the kitchen to make a bottle). She was unplugged and on 'room air' for at least 10 minutes. I spot-checked her on the pulse-oximeter and she was right around 95-96 which is great (they want her over 95). So, addition to probably being able to wean her off the the feeding tube, we're very close to weaning her off the oxygen too! yay! yay! yay! I turned down the oxygen a few hours ago to 1/32. Maybe by tomorrow night she'll be fully weaned?! You can see the tank in this pic:

I know there are other reasons why Scarlett has been so needy lately other than separation anxiety. She is also teething, and she could have tummy (gastro-intestinal) problems related to acid reflux.  I'm still on a lactose-free diet to help with her tummy problems and let me tell you... it S U C K S!!!  I have a huge bowl of Halloween candy (Snickers, Kit Kat, Butterfinger etc..) that I can't eat. It's torture!

In the morning, I can't have a bowl of cereal, I can't have yogart, I can't butter my toast...for lunch, I can't make a grilled cheese, chese crisp, NO PIZZA!! Man, I guess I don't realize how much dairy I eat until it's taken away from me! But I think the most important lactose-free sacrifice I'm making is NO CHEEZ-ITS!! It's no secret that I'm totally addicted to Cheez-Its. I joke with my sister that I keep a box at work, box at home, and a box in my car!!! ; ) I love Cheez-Its! I miss them already and it's only been 3 days! But I will do anything for my Scarlett and if it means giving up Cheez-Its, then so be it. :)

Sorry this post is so long. It's kind of like 3-blogs-in-one, I really haven't had time to write since she's been so high-maintenance lately. But she's asleep right now and I'm up pumping and blogging. :)

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