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.
Tuesday, August 28, 2012
Thursday, August 23, 2012
Postponed
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.
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
Debut!
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:
http://youtu.be/YRYEf6wYdsU
Check out the link to the MUSC Children's Hospital video:
http://youtu.be/YRYEf6wYdsU
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!
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!
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!
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!
Beautiful!
And we let these people take care of our child....... Love these ladies!
Thursday, July 19, 2012
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.
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.
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