Friday, July 20, 2012

Happy Anniversary!

Saturday Josh and I will be celebrating our 6th wedding anniversary. I could not have found a better soul mate, best friend, and father to call my husband. Through this journey with Kirby we have grown stronger in our faith but also in our relationship. Also, I need to send out a huge THANK YOU to all the nurses on 8d who have arranged for Josh and I to have some much needed time together. The nurses have set up a massage, a room at the William Aiken House and dinner to treat us. Also, a huge THANK YOU to our parents who have agreed to stay with Kirby. I know we will be refreshed after spending some time together.

As far as the results from yesterday's tests, things seem unchanged from the previous CT scan and echo.  Thank you Lord! The doctor actually stated "that things seem a little better for some reason". We know that it is b/c of so many prayers going up for this sweet baby girl. It was very tough seeing Kirby after her procedures yesterday. They had to give her general anesthesia which means they had to put in the ventilator and she had to recover in the PCICU. She did not like this at all as she began to wake up and she look so helpless as she looked into my eyes. They were able to remove the ventilator pretty quick and she was able to return to her room last night instead of spending the night in the PCICU. I love the nurses in PCICU but I do not miss being down there day in and day out at all.

The plan it to continue letting her grow and get bigger so they can do the next surgery. The surgeon was able to get good views of the valves so he can plan the repair. Thank you all for your continued support and prayers!

And we let these people take care of our child....... Love these ladies!

Thursday, July 19, 2012


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.