Tuesday, August 28, 2012

Postponed again

So we are postponed again.....
 The other surgeon has hurt his back so our surgeon had to fill in and perform a surgery that can't wait any longer. This is apparently the trend when you have a child that is seemingly "healthy" enough to wait a little longer. We are tentatively scheduled for next Tuesday. We know God has a plan and He is in control.

Thursday, August 23, 2012


Kirby's surgery has been postponed because a heart came available for another patient so they are going to do a heart transplant. Not sure what the plan is for sure but they are thinking Kirby's surgery will be Tuesday. Thankful that another life is being saved because of organ donation.

Tuesday, August 14, 2012

Surgery date

We have a date. Kirby is scheduled to have her second stage surgery and the valve repair next Friday, August 24th. We are excited b/c this is one step closer to home but it also makes me a little nauseous. Kirby is precious and so sweet and I can't stand the thoughts of surgery and the ICU again. Please pray specifically for successful valve repair as this is a difficult surgery for the Dr., success second stage surgery (the Glenn), for speedy recovery, no complications, off the ventilator quick, peace and strength for us. Kirby is continuing to grow. No huge jumps in weight but steadily going up. She was 4.81 kg this morning with her goal being 5.0. They feel like she will be very close to that by next Friday if not completely there. She had her pre-surgery echo done yesterday and she did great. She didn't even cry until the very end which is a huge miracle. Usually she hate it and we have to fight to keep her still. Her oxygen saturations have been really good most of the time which is really good.

Kirby had an exciting weekend and got to meet her friends Halie and Blake Cantrell...and of course there parents too. Thank to Nate and Nicki for coming to visit and keeping us company...and for bringing the kids to meet Kirby.

Friday, August 10, 2012


Kirby continues to grow each day. She has gained steady weight each day and is getting closer and closer to her goal weight...5.0 kg....(she was 4.76 kg today). Kirby has had a big week. We were chosen to star in the MUSC Children's Hospital 25th anniversary video a few weeks back and the video release and party was this week. Kirby made her appearance and went down the red carpet at the party in a stroller and loved it. She also went for her first trip outside today. She wasn't to sure about the bright sun but seemed to like it after a bit. Shout out to nurse Barbara for getting us out today! You are great....always keep us smiling with those steller dance moves and Whitney Houston voice. Also, thanks to my sweet friends for coming to visit last weekend and for getting me out for a few hours to catch some rays on the beach. You guys are great! I was so glad they were able to see and hold Kirby for the first time. Also, I had to make a trip home this week for a meeting and was able to have some girl time for dinner! Thanks ladies for joining me! It was so nice to be refreshed with some girl time. I feel so guilty for leaving Kirby but know that it only makes me stronger and a better mom to get some fresh air sometimes. I LOVE coming back and holding this sweet baby girl though.

Happy 4 month birthday to Kirby! I can't believe we have been here for 4 months. We are hoping that Kirby's next surgery will be no later than early September. We should know something pretty soon about that. Continue to keep us in your prayers as we approach a surgery date. I can't imagine how difficult it will be to turn her over to the surgeon, but I KNOW, God has a great plan. I can't wait to see it continue to unfold in her life!

Check out the link to the MUSC Children's Hospital video:

Sunday, August 5, 2012

Kirby's getting BIG!

Since the last post the goal for Kirby has been simple yet complicated....GROW! She has done just that at a pretty good rate but not without lots of small hurdles. There have been many issues with her NG tube which is supposed to now be TP (below the belly). This has been difficult b/c it has worked its way out of that postition, Kirby has pulled it out of that position, and for unknown reasons is difficult to get to that position after each time it comes out. They have had to re-insert the tube multiple multiple multiple times which means tearing the tape off her face and holding her down and she hates it! She has been a trooper but bless her heart she has been through it. Currently we are waiting until in the morning for them to reposition it b/c it is in her belly right now instead of TP. Kirby has gain weight fairly quickly (4.64 kg- 10 lbs 3 oz as of this morning) with her goal being 5.0 kg so she can have her next surgery and recover and come home.

Last Saturday, North Point Church hosted a benefit in Kirby's honor. What an amazing blessing this was! This consisted of a hot dog lunch, silent auction and raffle in which great businesses and individuals contributed, donated, and supported. The turnout was great and they exceeded their goal and expectations. We were fortunately able to surprise everyone and come home to be a part of the benefit....which they totally did not expect. We are truly grateful for all the hard work and support of everyone involved. God truly showed himself strong in this benefit.

We have had lots of firsts lately....Kirby now likes to lay on her belly and sleeps great that way. She fell asleep on Josh's chest as he layed back on the bed which he has longed for all of her life and she fell asleep on my chest and slept there for hours as I rocked her today which I have longed for all of her life. She is holding her head up very well when she sits up too! Continue to pray for weight gain and good health so we can get her well and home!