Maddie's appointment went really well yesterday. She weighed 3.68 kilos...that's 8 lbs. 1 oz. with the conversion, a 1 lb. 5 oz. gain in exactly 3 weeks, 21 ounces in 20 days! Children's does everything in the metric system so we're always a little confused when hearing her numbers since we have to convert it. It becomes quite the math war between Bryan and I. We're very happy with this weight then Bryan says, "this is what she probably would have weighed at birth if she had been full-term." Oh well, 8 weeks later she's 8 pounds. The best part is, she's gaining! She's a feeder and a grower, just like we want her to be. No echo was done, just an EKG. Her SATS are hanging around 80, so no change there either. Her feeds are good, volume keeps increasing weekly, she's staying at 24 cal (fortified breastmilk) and eating every 3 hours and also on demand. As for the ride over, we're working on it...the binky usually took care of her "outbursts". We talked a lot to Dr. Vernon about what possible outcomes her heart disease could bring for her future- which is nice to know what "could/could not" happen but can also be very scary. I'm still naive enough to think that when we go to the appointment, the doctors are going to give me a miracle diagnosis of Maddie's heart. I've been taking this one day at a time and yesterday decided to "go there" and found myself in tears last night. It's difficult to accept that she'll never have a normal heart or be cured of her defect...our bodies are just not meant to pump with only 1 side of the heart functioning. Sometimes it's hard to imagine that anything is wrong with her, she's just been doing so well. So I have to hold onto the good and enjoy every day because with all things in life, change happens. We go back for our next visit in 2 weeks. I think I'll hold off on asking so many questions next time.
(Heather (Daniel's mom)- if you read this, would you email or call me? I'd love to get in touch with you and see how Maddie's little ICU roomie is doing! 509-346-2821)
3 comments:
I noticed you left a message on our blog. It is so great to be able to meet such wonderful families who are dealing with the same things we are. The whole thought about the future for our heart kids is over-whelming to think about. Like you we just do it one day at a time. Your daughter is beautiful. So precious.
Jennylin
Mom to Bryson 18 months
(HRHS, TGA, CoA, ASD, Ebstiens Anomoly)
Maddie's smile is precious. You can just see the tail end of it, but it's so there! :)
Praises for weight gain for Miss Maddie!!! She's just full of great surprises, isn't she.
Lots of prayers for continued health, growth, guidance for you all, and wisdom for the doctors.
Kelly
Katie you are one great Dairy Queen--good job both of you on the weight gain. One day at a time is just fine for now and we all need to be reminded to be grateful for every day with everyone we love.
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