This is a blog about our baby Madison who was diagnosed and born with a giant omphalocele in Calgary. This is the story of her journey from diagnosis at 20 weeks gestation, to the present day treatment of her giant omphalocele.
Friday, January 28, 2011
Darn you ATCO gas lady, darn you!!!
Hi everyone, did you think I forgot about you? Madison went to see Dr. Eccles yesterday, and actually she saw, Darlene from Occupational therapy, Rosemary the dietitian, and Ruth one of the wound care nurses. We got to the Children's Hospital at 10:00am and we didn't leave until 2:00ish. It was a super long day, but Madison is such a trooper that she didn't complain until the last little bit.
First off we saw Darlene, and she measured Madison to make another neoprene cover, this one is purple, she is making it because one of Madison's lycra covers ripped, and those lycra covers just weren't cutting it anymore.
Next we went to see Dr. Eccles, but while waiting Rosemary came to get us, and she weighed Madison, who by the way weighs 10lbs 4oz!! Which means that Madison has been gaining 20grams a day, which what the goal is, (or so we thought), Rosemary told me that anytime Madison eats formula I have to "pump it up" with extra calories, by adding less water. They are never satisfied (just like Sherry said)!!!
After that, we were finally able to see Dr. Eccles, who is really happy with the health of the omphalocele, but is concerned about the base of it. Basically, where Madison's tummy opens to have the omphalocele is too narrow for the contents of the sac to go through, so we are getting like a mushroom happening. So we will have to, next time we see her, start padding the sides of her cover, as well as putting padding on the top. Dr. Eccles was really happy with the skin growth, but there is one part at the back that is not the same height as the other, so Dr. Eccles called in wound care, so that they can put on a special dressing. So our whole entire dressing change has changed. No more Flamazine! Also because of this new dressing, Tyler and I will only have to change the dressing every 2-3 days.
Dr. Eccles also mentioned that she thinks that Madison will be ready for her first surgery in a couple of months! That is good, and also very scary! Dr. Eccles thinks Madison will be in the hospital for 7-10 days at least. The time line depends on how long she will be on a ventilator afterwards, and how much Madison bleeds during the surgery. Sometimes the organs can get stuck to the sac, so when they try to remove the sac the organs can bleed, especially the liver. SUPER SCARY!
Anyways, I have to go now, the ATCO gas lady came about a half an hour ago, and woke up Madison because she rang the doorbell TWICE (who does that?!), and Madison had just fallen asleep, so now she is awake and super cranky, I have already fed her a huge bottle and she is still crying!! This is the longest amount of time is has ever taken me to finish the blog! I was going to put up pictures, but I will do that later.
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