2 and1/2

Grace had a followup cardiologist appointment yesterday. He was very pleased with her healing and has begun to decrease her diuretics. We are super excited about this. We were going through a pack of diapers in about a day or two. Poor thing would soak through a diaper as soon as you put a new one on her. The diuretics were also interfering with her sleep as we were having to give her a dose before bedtime. Thankfully that dose has been taken away and another diuretic altogether. So now we are just on Lasix twice a day. Potty training might actually happen in the near future :) We are also still oxygen free and so very thankful for that. We have another appointment with her cardiologist in a month and they will do an echo and possibly stop her diuretics altogether.



Now for the title of this post, Grace was officially 2 and a half years old yesterday :)

It's Raining, It's Pouring

You know the saying, when it rains it pours. Well that seems to be the case for one of Grace's heart buddies, Gavin. Unfortunatly, I don't think he is getting much sleep like the rest of the song says. He had to spend Christmas Eve and Christmas in the hospital. Poor little guy is just having a rough week with RSV and a virus. If you guys would just lift him up in your prayers.

Merry Christmas

We wanted to wish each of you and your families a very Merry Christmas.

“For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” (Isaiah 9:6)


P.S. Grace had her 1 week surgery checkup on Tuesday. I can't say she was thrilled to be back there, but all went well. She had her stitches removed and had a chest x-ray. Her lungs still look a little "wet" so they decided to leave her on her diuretics for a little bit longer. We will follow up with her cardiologist in another week or so.

Happy 7th Anniversary Babe

Happy Anniversary Babe. I have had an amazing 7 years with you and I so look forward to the next 53 years you promised me this morning :) I think I fell in love with you even deeper this past week. Thank you for always supporting me and loving me unconditionally.

Your Bride,

Laura

The "Furry" Little Elves

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Home Sweet Home

Just wanted to pop on here real quick and let everyone know that we are home safely. I just laid Grace down and we are getting ready to have dinner. We can't thank you enough for your prayers, emails, calls, texts, and comments. I will try and post more pictures in the next few days. We hope all of you have a wonderful weekend.

Rumor Has It

that we should be going home today. We don't have the official word yet, but we have already packed up our suitcases and started cleaning up the room :) Discharge seems to take all day. So, the next time you here from us, I hope to be blogging from our couch, with the Christmas tree lights twinkling in the background and our sweet girl sleeping in her own bed. Oh how we are all longing for our own beds and a full nights sleep. Though I must say I truly thank God for this week. We have had such fun and sweet times as a family in this room.

Chest Tubes Removed Successfully

Grace's chest tubes were removed successfully as well as the pacer wires from her heart. They gave her some morphine and verset before the procedure. Verset acts as an amnesia medicine and Grace will never remember the procedure. She was still awake during the procedure and a little mad, but her sats all looked great. Her oxygen levels are still a little lower than the doctors would like, but we still have some time to see if they will gradually go up. She stats well when she is sleeping, but when she is awake and upset, they drop pretty quickly. The surgeon seems to think they will gradually increase as she heals.

They are planning on trying to do an echocardiagram within the next hour to check the repairs to her heart and see how things look. They tried doing it when she was awake, but she was not having any part in it. So we are going to try again while she is sleeping. She is such a light sleeper, I don't know but it is worth a shot. They will do a chest x-ray either later today or in the morning and if everything looks well we may be discharged tomorrow. It went from being her a few more days to chest tubes out and discharge talk all in an hour. Needless to say we are excited, but also don't want to jump the gun to quickly. We will keep you updated as we get any more news.

Prayer Request

Grace is having her chest tubes and pacer wires removed as I type. If you read this within the next hour will you please lift her up in prayer. It is definately a good thing, but scary for us as well. I am not allowed to be with her, and that is difficult. They will need to check her vitals every 15 minutes for the first hour or so and then she will need to rest in bed. I will update again when I can. Thanks so much!

Good Evening From Atlanta

Well, not many changes today, but in some cases that is good. Grace's chest tubes continue to drain quite a bit more than is allowed to remove them, so we wait. We are so proud of her, they don't seem to slow her down. If you could just see her walking up and down the halls, you would never known she had open heart surgery less than a week ago and still has tubes sewn into her chest. They did add another one dose diuretic today to try and pull some more of the fluid off. One side effect of these is that she breaks out into drenching sweats even at a resting state. Needless to say,she has received many sponge baths the past few days. They also removed the dressing that was over her chest incision. It is hard to tell exactly how it looks as there are still steri strips; but from what I can tell it is looking great. Her oxygen saturations haven't been quite as high today, but not low enough to need the oxygen back. This is to be expected we are told and will take some time for them to settle out. So, we do all we can to keep her from getting upset as that tends to make them drop quickly. I have a feeling we have a spoiled girl on our hands, but I do believe she deserves to be for a little while :)

We continue to thank God for all of the the doctors and nurses he has placed in our lives. We have had some of the sweetest nurses that have loved on Grace and done all they can to let her get sleep. Hospital life does not allow for the best sleep, so these stretches are so much appreciated. I have had just the sweetest times laying in bed with her while she falls asleep. She will scoot all the way over to the railing and pat the bed for me or Ryan to lay with her. It is quite a sight to see Ryan and I squeezed in the crib with her, but oh I wouldn't trade these times for the sore bodies anyday. I just kiss on her sweet face and cheeks constantly. She will lay in bed and carry on her own conversations with her baby doll for a good 10-15 minutes before she falls asleep. I don't know much of what she is saying, but she sure does.

Well I am off to try and get a few hours of sleep before the next round of vital checks and meds. Thank you so much for checking in on us and all of your continued prayers. They mean soooo much to us.

What a difference a day makes

Notice anything different?



We have had a big day today so far. The biggest news of all is that Grace was weaned off oxygen in the middle of the night last night. She has been holding her oxygen saturations all day :) I truly think we may be done with the oxygen. Hard to imagine after almost two years, but it is a huge praise. She has also seemed to have very little pain and has actually been weaned off of Toradol (sp?) and switched to Motrin. We are trying to get her on a regimine of meds we can give at home. The chest tubes still continue to drain, but we are thankful they are doing so and not collecting fluid pockets. They don't seem to be slowing her down as she has been up and walking the halls most of the day. She also got to meet some Atlanta Falcon football players today and also some clowns. ;



Aunt Beth came to visit us today and Grace had so much fun playing tea togather. Thank you Aunt Beth for the sticker book and balloon. They are sure to bring lots of entertainment and fun :)

Monday Update

I have started this post a few times but never seemed to be able to finish it. Thank goodness for being able to save drafts. Grace seemed to feel relief from the pain today. We have a pattern now of Tylenol with codeine in between the tordal and morphine to keep her from hitting that point of the medicines wearing off. She actually requested to go on a few walks down to the playroom today and has been sitting up most of the day. Her chest tubes are still draining so they will remain in place a few more days. We are still not able to wean her off the oxygen yet. We were off for 4 hours today, but had to put her back on it. The surgeons would like her to stay above 85 and she likes to hang out around 82 or so. The respiratory therapists think that once the chest tubes are removed that she will be able to take deeper breaths. She is afraid to cough or take deep breaths right now due to the pain. She still doesn't have much of an appetite, but we are seeing a small improvement each day. Chicken noodle soup with a straw seems to be the winning meal for now. I apologize for the lack of pictures. There aren't any computers that we have found here that will allow us to upload pictures. I will try and upload some just as soon as I get access to one that will. Oh and we have a huge praise, Grace's smile and giggles have returned. They may only come every now and then, but we are so thankful to see that side of her. Well,I have a little girl peeping through the bars in her bed looking at me so I better go and get her to bed. Good Night!

Lazy Day

We are having a lazy Sunday today and taking it easier than yesterday. Grace has had a more difficult time with pain and maintaining her oxygen saturations since last night. This mornings x-rays revealed the culprit=fluid buildup in her lungs. With the help of some additional pain medications and an increase in her diuretics we are trying to keep her comfortable. Her chest tubes have been draining significantly more today so they aren't planning on removing them for another day or two at least. She was able to nap comfortably for 2 hours this afternoon. Sometimes sleep can be the best medicine of all.

We wanted to sincerely thank ALL of our family for traveling to be with us during this time and for ALL that you do for us. We truly have the best support system a family could have. We hope you know how much we love each of you and this road would be so much harder to walk down without you. Kate, thank you so much for coming to see us and for the white chocolate yummies, I am eating some as I type. Those boys just don't know what they are missing. Debbie and Barney, thank you for coming to love on Grace and us,for the goody bag of snacks and for Grace's bear. She woke up from her nap and that is the first thing she reached for. She has been having some pain this afternoon and has not let go of it. Ryan is not much of a sweet eater and has already had a few sugar cookies. Ryan agrees with you Barney on how yummy they are :) I am going to have to get the recipes from you Debbie for both of the cookies. It is amazing what how much home cooked goodies can brighten up a day :)

Going for a Ride

Day 2 Post Op Update

We were moved to our own room last night on the cardiac stepdown unit around 6:00pm. Ryan and I are now able to stay in the room with her. Grace has been weaned to 1 liter of oxygen as of this morning. She had a much more restful night with the help of some morphine and toradol :) We haven't gotten any reports back on her blood work or chest x-rays. Weekends tend to be much more layed back and not as rushed. Yesterday's x-rays were a little "wet" so we are hoping with the increase in Lasix (a diuretic) that today's look much better. The plan for today is to wean more on the oxygen and try and get her up out of the bed moving. If all goes well, her chest tubes may be able to be removed tomorrow. I am going to post a few pictures below from the past few days. The first picture is yesterday (the day after surgery). The second picture is a few hours after the surgery. The third and fourth pictures are from our pre-op room before surgery.

Day 1 Morning Post Op Update

-Foley Catheter has been removed
-Weaned down to 5 liters of oxygen from the 10 liters on a high flow canula
-They are removing the central line from her neck as I type
-She had been started on another pain medication called Toradol
-One heart function medication has been stopped (milnadrone, not sure of spelling)
-Goal for today is to wean her down to 3 liters of oxygen and try to begin feedings
-If she tolerates this well she can possibly be held by mommy and daddy and be moved to the cardiac step down unit this afternoon/evening
-We aren't sure of exactly how conscious she is. She will sit straight up and cry out or look around and then lay back down. The cardiac team plans on weaning one of her sedation medications today as well to see how well she will do a little more conscience.
-We continue to thank each of you for all of your prayers and support.

10:50 PM Update

Grace was extabated at 9:00 pm. We have been told by all the nurses that she is a fighter in all aspects. She was fighting the breathing tube so hard,shaking her head back and forth and holding her breath, they decided to try her on her own. She had some difficulty at first with secretions and a paralyzed vocal cord from the intubation, but they placed her on 10 liters of oxygen through a high flow nasal canula and her blood gases seem to be gradually improving. Needless to say, she is in soft restraints in order to keep her from pulling out anything (chest tubes, etc.). The plan/goal is to try and wean the oxygen down through the night and have her completely breathing on her own and possible move to the step-down unit by tomorrow. We won't have much of an update/game plan until around 10 am after rounds tomorrow but will keep you posted.

Surgery Finished

Grace is out of surgery as of 3:15. From the mouth of Dr. Kirshbom, it was a long day and rather difficult surgery but Grace is stable and doing well. They had alot of scar tissue to go through which took quite a while. The procedure itself proved to be difficult with the anatomy of Grace's heart (dextracardia, etc.), but he was able to complete the grafts and other necessary procedures. We should get to see her in about an hour once she has been stabalized in the cardiac intensive care unit. The plan is to begin waking her up either this evening, or possibly let her rest and do so in the morning. Extabation will then follow once they see that she is breathing on her own against the ventilator. We can't thank you enough for taking the time to lift up our little girl/family and doctors in your prayers.

Surgery update 2

All,
The hospital staff here are amazing... Grace is truly in the most capable hands.
Her nurse called at 150 PM to update the procedure is going as planned - it just continues to take a long time.
Again Ryan and Laura feel blessed by the prayers and messages of encouragement.
We will post again as soon as we hear more.
With love,
Erin for the Furr family

Surgery update #1

The surgical team informed Ryan & Laura that Grace went on the by-pass machine at approximately 1117 AM. The procedures will take at least 3 hours - we will post updates as we receive them. Ryan & Laura are amazingly strong and continue to feel blessed by all the support of love and prayers.
Please continue to keep them all in your thoughts and prayers - we leave the results to what God has planned next for Grace.
With deep appreciation for all the love and support,
Erin for the Furr family

Surgery day

Good morning all. Just a quick update - Grace's surgery did not begin until 9AM this morning. Please just continue to lift Grace, Ryan and Laura and the team of doctors and nurses up in prayer. They expect the surgery to take around six hours. We will update with posts as we receive information. Thank you all for the love and support!
Erin for the Furr family

news from Atlanta...

We're here in Atlanta, and all pre-op went well, so we're T-minus 12 hours and counting.... We are to report in the morning and surgery is scheduled for 7:30am. We'll keep you posted & thanks for your continued prayers!

Say Cheese!

We were playing around with some of our camera's features and thought we would share some of the fun times with you!

Make video montages at www.OneTrueMedia.com

Catch Up

Many of you may be here from www.gracefurr.com and others may be new here. So, lets play a little catch up from the past few months. As many of you know, Ryan was deployed to Korea from September 2007 to September 2008. Grace and I moved to Birmingham, Alabama to be near our family during this year. Ryan returned this September and the military assigned us to Robins, AFB in Georgia. We have spent the past few months unpacking, getting Grace acquainted with all new doctors, and just spending time as a family again. I can't put into words how wonderful it is to have him home. Watching how much fun Grace and Ryan have together just warms my heart. October was spent enjoying the beautiful weather, carving pumpkins, and trick or treating (pictures to come once I figure out how to post them). November brought fun times visiting with both sides of our family. We just got back from Alabama, and I still feel full from all of the yummy food. November also brought a heart catherization for Grace and the news that she is ready for her Fontan procedure. We are scheduled for December 11th at Children's Healthcare of Atlanta at Egelston in Atlanta, GA. We are looking forward to having this behind us, yet at the same time so emotional about heading down this road again. If all goes according to plan, this surgery should do away with Grace's need for oxygen. It is hard to imagine life without 25 feet of tubing following you around, but we are SOOO ready to be there. I couldn't end this post without saying how super proud of Grace we are. She has been through so much in her 2 short years and yet she is still a happy girl and so loving. You have taught us so much, we LOVE you sweet girl! You are our greatest blessing!

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