Kirbtastic

Kirbtastic as nurse Barbara calls her...........
So again I have to apologize for not updating in so long. The days seem to get away from me so quickly. So we have now been on the 8th floor in a room for 3 weeks. We have shared some fussy days, great days, sleepless nights, and good nights. There has been alot going on here. Kirby began getting full breast milk in bolus feeds through her NG tube (1 hour on of feedings and 2 hours off) and was tolerating it well....or so we thought.... We discovered last week that she has a milk protein allergy. With that said, she had been very fussy and just not herself. Prior to finding out about the allergy we were thinking the behaviros were related to reflux. She is taking medicines for that also. So, we discontinued breast milk and she is now on a special formula and continuing with the reflux medicines. So far so good with minimal gagging and spit ups now. The main goal has been to get Kirby to gain weight so we can get her to the next surgery. The surgeon wants her to be 5.0 kg. This is a very difficult process bc of how hard her heart is working. She burns lots of calories and weight gain is difficult. We are making some slow progress with that. She is now 4.03 kg. With the new formula, she should be able to gain a bit easier bc her body will be able to absorb the nutrition better. She has also had some episodes of her oxygen saturations dropping periodically so they are looking into that today. After a few echocardiograms, they have not been able to get the views they would like of her shunt that was placed in her heart during the first surgery. What they have been able to see is some possible narrowing around the shunt which may be contributing to the drops in her O2 saturations. So......... they decided to do a sedated CT scan and echo today which is where she is now. This will allow them to get some good views of her heart. During this process today they had to put her back on the ventilator to sedate her and she will recover in the PCICU this afternoon and return to her regular room later today. We have loved being in a room and getting to bond with Kirby. The nurses have been great and love Kirby too. We also became movie stars this week ;).  MUSC childrens hospital is celebrating 25th anniversary so they are doing a video. We were asked to be in the video as a family. We will appear in a 10 second or so clip on the video. HA! All in all, things are good. I will update with the results from the procedure today when we receive information ourselves.