Whew we are 48 hours post op and so far she is TEXTBOOK truncus heart baby! She is still holding her own, a lot of the meds have been decreased, so they are weaning her off, which means she is doing more of the work. Her chest closure is set for Friday sometime near midday, it will take a few hours and then she will be sleepy from the sedation. I am excited because if she stays this way, we were informed by her cardiac nurse that we will start to see some of the tubes, wires, and IV’s removed this weekend and ventilation probably by Sunday, even better news, IF she stays this good, she will be moved to the almighty 6th floor (the 6th floor is STEP DOWN) mid-next week, yeah baby girl! She will spend about a week in step down if she eats well and vitals stay like this, so in 2 weeks from tomorrow she could be home, in her own bed (but she can’t have visitors for a while, sorry)! S
tep down is the integration unit where the parents provide most of her care, the cardiac nurses will teach us how to care for her and her needs, educate us on what to expect, and observe. Most babies get held in step down because they have problems eating, but Ryleigh is a head of the game because she was eating for 6 days before her surgery, sooooo she has developed the breath-swallow-suck skills – so we are encouraged by this, which is also HUGE, oh and she loves her paci which is also a plus – it’s good for heart babies (or poor feeding babies) to take a paci if possible, faster skill development!
The chest closure will be a huge milestone and of course when she eats through her NG tube this weekend will also be a huge milestone to see how her gut handles the blood flow and her heart handles the strain. The most action we saw today was the nurse treated her left eye for a clogged tear duct, . She is moving so much now, they had to weight her arm down because they are afraid she will grab her ventilator tube and pull it out. She doesn’t like it and I don’t blame her. I think she handled this surgery better than most adults!! My new normal is setting in and I could not be happier I am her mommy, at least I know under my wing she will be well cared for and loved by all those in her life.
My heart hero, Ryleigh, we love you sweet girl!!!