Update on Twins Charlie and Georgia
Author: Karen, Mom to Twinkies Charlie and Georgia
Charlie was diagnosed with a lot of things other than her heart condition while she was at SickKids, mostly related to her prematurity. Georgia was also diagnosed with something called a ventriculomegaly, which is a neurology issue. Georgia's issue was actually quite a concern while I was an in-patient. In fact, at one point, we were gambling with when we should deliver the girls...earlier than expected so that Georgia’s brain issue wouldn't get worse or later than expected so that Charlie would have more time to grow for her heart disease. Fortunately, we never had to make that decision because the girlies decided for themselves when they were coming. We never mentioned anything about these things in earlier updates because, honestly, it was too much to think about so we just focused on Charlie’s heart issue and would deal with the rest as it presented itself. Charlie’s discharge papers noted that she had:
- Respiratory distress syndrome
- necrotizing enterocolitis
- submandibular osteomyelitis
- mild optic nerve hypoplasia
- panhypopituitarism
- osteopenia
- GERD
- non-occlusive thrombus of her IVC/occlusive thrombus of her right saphenous vein, right common iliac vein and right external iliac vein / left common iliac vein, left external iliac vein, left common femoral vein and left greater saphenous superficial femoral vein non-occlusive thrombus.
Yeah...say that ten times fast!!
Day 13: Charlize - 2014 SickKids Commercial
For those of you who have been following along with our daily videos of our Better Tomorrows brand campaign, you may remember meeting Charlie and Georgia on Day 13. Watch this video for an update on the girls.
It's not surprising to see lists like these in NICU land. Both girls had episodes when their heart rate dropped significantly and they would stop breathing. Charlie had the extra issue of low oxygen levels that would sometimes drop as low as 30%. The hard part is that you really have no idea how these events will REALLY affect your child until they get older and start to develop.
So you wanna know why I believe in the man upstairs? We just got back from a week full of follow up appointments for both girlies. Georgia had a follow up appointment with neurology on November 25 and she's 100% fine. In fact, they noted that her development was ideal and they have no reason to think that she will have any future issues or problems. Case closed!
Charlie had infant development, orthopedics and endocrine appointments on the 26th and 27th of November. Infant development was very pleased with how Charlie is progressing and they saw ZERO areas of concern or worry. Because of her cardiac issue, she obviously doesn't have the strength that she should have at this point but they said this will drastically improve once she has her fix surgery in the new year. Overall, physically and neurologically, Charlie is developing normally which was music to our ears!!
"Needless to say...we have a happy Momma and Poppa bear!!!!!"
Most importantly, remember all the issues that Charlie was diagnosed with above?? Well, she has ZERO of them now. During the remaining follow up appointments, we were told that she either didn't have the conditions to begin with, the conditions went away or Charlie’s body healed HERSELF since she's been home. Yup...healed ITSELF!!
Cardiology-wise, she had an ECG, X-ray and another follow up with her cardiologist and his exact words were "she's exceeding his expectations".
I cannot write the words that could reasonably explain how it felt for us to hear these things. It's been 1 year and 1 week since we first found out that we were pregnant and my gosh, we've had a lot to absorb and deal with in that time frame. To hear all the doctors tell us that, not only are these girls alive and here (which honestly, was a pretty big worry at one point), but they are basically overcoming everything that was thrown at them and are living breathing little miracles.
Needless to say...we have a happy Momma and Poppa bear!!!!!
