Hi All,
Just a quick note, I got a phone call from Jackie about 11:45 this morning and the nurses were able to put Gracie in Jackie's arms and she was able to hold her daughter for the first time today! So exciting that I just wanted to pass on the news to everyone!
Tuesday, January 30, 2007
Monday, January 29, 2007
3 weeks old!
(from Jackie)
Gracie Ann is 3 weeks old today :)
When I got here this morning I spoke to her nurse Helen who told me that there was a problem with the pacemaker early this morning (around 5:00 am) and that her heart rate dropped way down for a few seconds but they got it under control. However, they will have to do something with the pacemaker sooner rather than later.
The last drainage tube was removed from her chest this morning as well as her central line. She has also been taken off of the Dopamine (spelling?) and the ventilation has been brought down from 45 to 35. Looks like another good day.
Gracie Ann is 3 weeks old today :)
When I got here this morning I spoke to her nurse Helen who told me that there was a problem with the pacemaker early this morning (around 5:00 am) and that her heart rate dropped way down for a few seconds but they got it under control. However, they will have to do something with the pacemaker sooner rather than later.
The last drainage tube was removed from her chest this morning as well as her central line. She has also been taken off of the Dopamine (spelling?) and the ventilation has been brought down from 45 to 35. Looks like another good day.
Saturday, January 27, 2007
GRACIE GETS BREAST MILK
(from Jackie)
Gracie is doing very well. in the last 3 days she has had 3 of her drainage tubes removed (out of 4) she came off of the Epi, came off of the lasix drip (she is now on a dose every 6 hours) she is also off of the calcium drip. She has come down on the dopamine and had her tenkhoff taken out (this was the tube from the dialysis) she has come down on the ventilator from 65 to 45 and is off the nitrous and she was given breast milk through a feeding tube yesterday. She has tolerated all of this great!
Yesterday (Friday) Dave took me to my post op appointment in Walnut Creek. (everything is fine) then we made a quick stop in Brentwood to pick up the other kids and bring them back to San Francisco for the night. They got to see Gracie again and noticed how much better she looks. They made Valentines for Gracie and hung them on the walls in her room. It was so awesome having them here. My mom came to pick them up today, they will be spending the night with her tonight and she will take them back to Chaundra tomorrow. I am already looking forward to seeing them next weekend.
Thank you everyone for all of your support, I honestly don't know how we would have gotten this far without you. We truly love you all.
I will post more photos as soon as I can.
Blessings,
Jackie
Gracie is doing very well. in the last 3 days she has had 3 of her drainage tubes removed (out of 4) she came off of the Epi, came off of the lasix drip (she is now on a dose every 6 hours) she is also off of the calcium drip. She has come down on the dopamine and had her tenkhoff taken out (this was the tube from the dialysis) she has come down on the ventilator from 65 to 45 and is off the nitrous and she was given breast milk through a feeding tube yesterday. She has tolerated all of this great!
Yesterday (Friday) Dave took me to my post op appointment in Walnut Creek. (everything is fine) then we made a quick stop in Brentwood to pick up the other kids and bring them back to San Francisco for the night. They got to see Gracie again and noticed how much better she looks. They made Valentines for Gracie and hung them on the walls in her room. It was so awesome having them here. My mom came to pick them up today, they will be spending the night with her tonight and she will take them back to Chaundra tomorrow. I am already looking forward to seeing them next weekend.
Thank you everyone for all of your support, I honestly don't know how we would have gotten this far without you. We truly love you all.
I will post more photos as soon as I can.
Blessings,
Jackie
Friday, January 26, 2007
A Great Big Thanks!
This post is from Jackie & David:
Hello everyone,
I believe that this has been the longest few weeks of our lives. From the time we found out about Grace's heart condition until now has been one big stressful learning curve... and it just keeps adding up. We thought that we had done our homework by looking up everything we could on Ebstein's Anomoly; little did we know that it was just the begining.
We know now that heart problems can, and do, affect every other major organ. We have had to quickly learn about underdeveloped lungs, and arteries, shunts, liver and kidney functions, brain development, and enough about drugs for all of the above that we can only hope to forget half of it.
When this all started we were told it would be a roller coaster. We understood there would be good days and bad. We understood that this could be a long, long process. But, I don't think we fully comprehended the thrills of the highs and the depression of the lows. I don't think that we understood how quickly things could change, and how close to the edge one little girl could survive.
Grace has shown me, in the two plus weeks she has been with us, that she is the strongest person I know. Through all of the tubes and hoses and IVs and monitors and ventilators and machines that are crowded into her little room, her personality still pushes it all away and shines. You can see in her eyes the determination that helped her stay here when her medical team had given up.
Now, this is not to say that the medical team here is at fault in any way. They have been nothing but incredible stewards of our little girl's health, and the main reason she is here today. But, as Dr. Azakie said to me "She truly is an amazing little girl... I gave up before she did... and that doesn't happen."
Every day, we go into her room and hope that there are less machines, less drugs and less holes in our little amazing Grace. We have been blessed with a wonderful support group of family and friends. We know that we will never be able to thank you all enough for everything that you have done... but, please know that each day that goes by, we thank God for everything and all of you for helping us. Continue sending you prayers to Grace - she still needs every one of them.
A great big thanks and lots of love,
Jackie & David
Hello everyone,
I believe that this has been the longest few weeks of our lives. From the time we found out about Grace's heart condition until now has been one big stressful learning curve... and it just keeps adding up. We thought that we had done our homework by looking up everything we could on Ebstein's Anomoly; little did we know that it was just the begining.
We know now that heart problems can, and do, affect every other major organ. We have had to quickly learn about underdeveloped lungs, and arteries, shunts, liver and kidney functions, brain development, and enough about drugs for all of the above that we can only hope to forget half of it.
When this all started we were told it would be a roller coaster. We understood there would be good days and bad. We understood that this could be a long, long process. But, I don't think we fully comprehended the thrills of the highs and the depression of the lows. I don't think that we understood how quickly things could change, and how close to the edge one little girl could survive.
Grace has shown me, in the two plus weeks she has been with us, that she is the strongest person I know. Through all of the tubes and hoses and IVs and monitors and ventilators and machines that are crowded into her little room, her personality still pushes it all away and shines. You can see in her eyes the determination that helped her stay here when her medical team had given up.
Now, this is not to say that the medical team here is at fault in any way. They have been nothing but incredible stewards of our little girl's health, and the main reason she is here today. But, as Dr. Azakie said to me "She truly is an amazing little girl... I gave up before she did... and that doesn't happen."
Every day, we go into her room and hope that there are less machines, less drugs and less holes in our little amazing Grace. We have been blessed with a wonderful support group of family and friends. We know that we will never be able to thank you all enough for everything that you have done... but, please know that each day that goes by, we thank God for everything and all of you for helping us. Continue sending you prayers to Grace - she still needs every one of them.
A great big thanks and lots of love,
Jackie & David
Wednesday, January 24, 2007
More details for Wednesday Jan 24th - 16 days old
So more of the same information as before. Gracie is slowly coming down on drips and the medicine/drugs that they are giving her. She is starting to do a lot of the things that the drugs have been really responsible for which is good news. She is making her own oxygen now, so that machine might go away soon, but the machine that makes the oxygen is separate from the ventilator, which she may still require. One other discussion is that she may have to have a permanent pacemaker. Most doctors are in favor of it, but the surgeon disagrees. He thinks she only needs more time, so we will have to wait and see how that discussion progresses.
Stable is always a good thing
Hi Everyone, Grace seems to be resting comfortably for the last few days. They ended up closing the incision on Tuesday rather than Monday, so today is just a day of rest. I believe that they would like to take the ventilator down, but they don't want to do any more trauma to the baby. Seems to be best to just let her rest and continue to recover. Her blood pressure continues to go down and stabilize which is always a good thing. Sorry I don't have much more information at this point.
Sunday, January 21, 2007
13 days old and going strong
Hi everyone,
Another update this evening. Grace had another good day today. The discussion today is that they are moving the arterial line from her belly button to her arm. (I am not certain if this has already happened or not.) Apparently this is because they are worried about either a blood clot or "burn spot" in Gracie's toes. A burn spot isn't an actual burn, more like either dead blood in the toes, which if it doesn't get better they might lose the toes. Moving the arterial line is due to the fact that if you leave the line in the belly button, there are too many organs in close proximity, and you risk a blood clot going into a vital organ. So by moving it to the arm, they would have time to respond if she still did have a clot. They also are hoping to close her up from the last surgery tomorrow, will find out from surgical team if that is able to happen.
Part of the decision around closing her up is whether her fluid levels have dropped enough. The blood pressure needs to go down, but good signs are that her kidneys are still functioning, she is still making pee, they are slowing weaning off of drugs, the ventilator, etc.
Good thing to report is that Gracie is definitely responding to her mom. She responds with Jackie in the room by squeezing her finger, she responds to voices and she seems to just get calmer whenever Jackie is around. The kids were all able to see baby Grace both yesterday and today and were happy to get to do that.
Another update this evening. Grace had another good day today. The discussion today is that they are moving the arterial line from her belly button to her arm. (I am not certain if this has already happened or not.) Apparently this is because they are worried about either a blood clot or "burn spot" in Gracie's toes. A burn spot isn't an actual burn, more like either dead blood in the toes, which if it doesn't get better they might lose the toes. Moving the arterial line is due to the fact that if you leave the line in the belly button, there are too many organs in close proximity, and you risk a blood clot going into a vital organ. So by moving it to the arm, they would have time to respond if she still did have a clot. They also are hoping to close her up from the last surgery tomorrow, will find out from surgical team if that is able to happen.
Part of the decision around closing her up is whether her fluid levels have dropped enough. The blood pressure needs to go down, but good signs are that her kidneys are still functioning, she is still making pee, they are slowing weaning off of drugs, the ventilator, etc.
Good thing to report is that Gracie is definitely responding to her mom. She responds with Jackie in the room by squeezing her finger, she responds to voices and she seems to just get calmer whenever Jackie is around. The kids were all able to see baby Grace both yesterday and today and were happy to get to do that.
(Miranda and Colette were so happy to finally see their baby sister)
(Adam drew a picture for Gracie Ann)
We'll keep you posted on any new items as soon as we hear. Keep up the thoughts and prayers.
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