Below is a rare photo of Caydee without her tube. You can actually see her whole face without any distractions!!! We have to change it out every Friday and we took this pic between tubes last week :)
This afternoon Caydence had her first appointment with her cardiologist since leaving the NICU last month. They started with an electrocardiogram which is basically an ultrasound on your heart.
Caydence did NOT like that. It isn't painful or anything. The technician just uses a little baby transducer with jelly on it and rubs it lightly around on her chest to get images of her heart at different angles. They can also look at the blood flow within the heart to see how much un-oxygenated/oxygenated blood is mixing where her holes are, as well as listen to the blood flow within the heart.
Initially we just laid Caydence on the examining table, cuz she looked kinda tired, so we figured she'd just lay there. The tech turned on some nice lullaby music and dimmed the lights. But after a bit, she started to get fussy and squirrel around so the tech had to stop cuz he couldn't get good pictures with her moving all over. So then Josh had to hold her while the tech kept doing his thing. She still was kind of squirrely, but we muddled through.
After the Electrocardiogram, we went into an examining room and the nurse took her oxygen saturation and blood pressure. Initially her oxygen was in the mid 80's, but the oxygen reader must have been in a bad spot cuz when the nurse moved it she was able to get a reading of 95. Which is good, cuz they like for it to be between 95 and 100. I think her blood pressure was good, but the nurse didn't comment on it.
Next Caydence got weighed and measured. When she was born she was 17 inches long and 4 lbs 7 oz. Today, she was 20.75 inches long and she weighed in at 7 lbs 3 oz! She had gained 8 oz since she met with her pediatrician a week and a half ago. Once the nurse was done taking all her vitals, we got to meet with her cardiologist. He thought that, although she is gaining weight, she could be gaining a little more. So over the next four weeks we need to slowly increased each feeding from 48 mls to 59 mls.
He had just looked over her electrocardiogram and thought things were looking good, (except for her holes). He is still thinking that she will not have her surgery until she is 6 months to a year old. He wants her to get as big as possible before having her surgery.
For now her medications are helping her heart along. The only reason to do her surgery earlier is if she stops gaining weight, or starts showing signs of heart failure. He said that since she is taking her medications, she most likely won't show any signs and then they'll just schedule for sometime next spring.
The only downside is that since she's not going to have her surgery for awhile, I'll probably be out of work and so then Caydence will only be under Josh's insurance, which doesn't cover her current doctors. So now we'll have to switch to a different hospital and different pediatricians & cardiologists. :(
In the event that we DO have to switch doctors, our current doctor gave us the names of cardiologists who he knows and recommends in Josh's network and he reassured us that they would be quite capable of taking good care of her. So that made us feel a little better. We'll have to see how everything pans out.
Meanwhile, Caydence is doing well, and that's what is most important! <3