Thursday, August 25, 2011
Going Home!!
August 26, one month exactly from when she got her heart we are going home. We have been here since March 24, 2011 and definately ready to go! My emtions are all over the place. I am excited but also scared. Grace is coming home on almost a dozen medicanes, a feed tube, a line in her chest. We have a feed person coming tomorrow afternoon, a nurse saturday, and a appointment to be back in Gainsville on Monday. We will be traveling back and forth for a long time!
I know once I get home and get into a routine everything will be fine.
I am also going to miss alot of the nurses and doctors that are here. We have been here for five months. That is a long time. We definately have become close to everyone that works here.
Everything we have been through has almost become unreal. I feel like it is all drifting into a dream.
WE ARE GOING HOME!!!
I know once I get home and get into a routine everything will be fine.
I am also going to miss alot of the nurses and doctors that are here. We have been here for five months. That is a long time. We definately have become close to everyone that works here.
Everything we have been through has almost become unreal. I feel like it is all drifting into a dream.
WE ARE GOING HOME!!!
Sunday, July 31, 2011
We GOt a Heart!!
On July 26, 2011 Kirk, Emily and I were in Grace's room hanging out when Doctor Fricker walked in at 9:15p.m. We had come to the point where we were feeling like we were never going to get a heart. Discouraged is not even the right word to explain it!
Doctor Fricker proceeded to tell us "we think we have a heart!" Its hard to even remember that first feeling, I felt the tears coming to my eyes and tried to fight them off, I had know from previous stories to not get excited. Alot could happen from that moment to the moment when the heart got here to make it fall through. After doctor Fricker left I looked at kirk and was speechless. We started to make plans for Emily and kept reminding each other not to get to excited!
Kirk drove emily back to St Augustine to stay with her Grandmothers. I held grace that night till almost right up to when they took her for surgery, at 4:30a.m. Around midnight I started getting excited and sending out textes and phone calls. I couldn't believe that moment finally came.
At 4:30a.m. on July 27, 2011 I walked Grace down to the OR. It was her first surgery I didn't cry saying goodbye. I can't explain the feeling. I was definately scared but I think the excitement overwhelmed those tears!
They had Grace down stairs till 3:00p.m. that afternoon. When she came back up she looked like a different baby! She was pink, not blue anymore! She looked amazing! We had one scare about two after we came up, she started had irrgular rythms in her heart. The hooked the pacing wires up to the machiene and began to pace her heart. It fixed the issue imediately! Since then she has been great! She is still in alot of pain, but it seems to get better with everyday! We are hoping to go home in a month.
The main issue that we think we are going to face is eating. Grace hasn't eaten in four months. The feeding tube has been feeding her intestints. They said the worse cause would be she would be sent home on a G tube, that would be attached surgically in her stomach. If this is the worse thing then I will take it!! We will see time will tell!
Thank you again for everyone's thoughts and prayers! I will try and update again soon!
Doctor Fricker proceeded to tell us "we think we have a heart!" Its hard to even remember that first feeling, I felt the tears coming to my eyes and tried to fight them off, I had know from previous stories to not get excited. Alot could happen from that moment to the moment when the heart got here to make it fall through. After doctor Fricker left I looked at kirk and was speechless. We started to make plans for Emily and kept reminding each other not to get to excited!
Kirk drove emily back to St Augustine to stay with her Grandmothers. I held grace that night till almost right up to when they took her for surgery, at 4:30a.m. Around midnight I started getting excited and sending out textes and phone calls. I couldn't believe that moment finally came.
At 4:30a.m. on July 27, 2011 I walked Grace down to the OR. It was her first surgery I didn't cry saying goodbye. I can't explain the feeling. I was definately scared but I think the excitement overwhelmed those tears!
They had Grace down stairs till 3:00p.m. that afternoon. When she came back up she looked like a different baby! She was pink, not blue anymore! She looked amazing! We had one scare about two after we came up, she started had irrgular rythms in her heart. The hooked the pacing wires up to the machiene and began to pace her heart. It fixed the issue imediately! Since then she has been great! She is still in alot of pain, but it seems to get better with everyday! We are hoping to go home in a month.
The main issue that we think we are going to face is eating. Grace hasn't eaten in four months. The feeding tube has been feeding her intestints. They said the worse cause would be she would be sent home on a G tube, that would be attached surgically in her stomach. If this is the worse thing then I will take it!! We will see time will tell!
Thank you again for everyone's thoughts and prayers! I will try and update again soon!
Wednesday, June 22, 2011
Lonely
So if you are a mom reading this who is about to face a simlar or same situation, let me give you some words of advice. Haha, that is pretty much what this blog is about anyway.
So when you are here you will meet alot of great familes. You feel like you end up bonding with them almost more than your own close friends and family. This I feel is because they know the pain you are going through. The thing to remember is that you may make friends that will last a life time, but some you will never hear from again. And if you are in a sitiuation like ours, you will be there longer than any of them. You will see many familes come and go. Sometimes it is best not to get that close. It only makes it harder when they leave and you are still there, alone!
So when you are here you will meet alot of great familes. You feel like you end up bonding with them almost more than your own close friends and family. This I feel is because they know the pain you are going through. The thing to remember is that you may make friends that will last a life time, but some you will never hear from again. And if you are in a sitiuation like ours, you will be there longer than any of them. You will see many familes come and go. Sometimes it is best not to get that close. It only makes it harder when they leave and you are still there, alone!
Monday, June 20, 2011
Sorry for the over due update!
So let me start by saying it has been too long! Grace ended up about 5 weeks ago having a decline. She keep dropping. We decided to move foward with the surgery. Grace came out a whole new baby! It was definately the best descion we could have made. We even for a little while we attemping to wen off of the IV drips and switch her to oral medications in the hope of maybe being able to wait from home. After three weeks of trying this, we relized this was not going to work. She kept throwing up and could keep anything down. We ending up going back on a drug called Milirone that helps her with her function, unfortanely her heart is just to damaged to be able to wait from home. She has had her up and down's since. She is still not up to full feeds. For a baby it is alot of work to eat and digest, and her heart is just not strong enough to eat full feeds and digest. We have since switched to continous feeds, and will stay this way till we get a heart. For the most part we started doing well again till about last Sunday, we had another morning full of de stats.
Grace's body is slowly starting to shut down, we just have to hope it stays in a slow process. They say the stomach is the first thing to give out then the Kidneys. After you get a heart they say they should kick back in if to much damage is not caused.
We are in a waiting game right know, and pray for a heart every day! Now we also pray for everything to stay in slow of a decline as posible!!
Grace's body is slowly starting to shut down, we just have to hope it stays in a slow process. They say the stomach is the first thing to give out then the Kidneys. After you get a heart they say they should kick back in if to much damage is not caused.
We are in a waiting game right know, and pray for a heart every day! Now we also pray for everything to stay in slow of a decline as posible!!
Wednesday, May 4, 2011
May 4, 2011
So let me start by apoligizing for taking so long to put a new post up. Transfering to Gainsville has been hard on all of us. Not just the drive, but meeting all new doctors, nurses, surgeons, etc. We are finally after a month starting to adjust. Grace has had a few scares in the last month but, has pulled through. We have come to a point where we can not wait much longer for a heart. Her function in her heart has improved a little since the heart attack, but not enough that she can come off the venilator. They did a procedure this morning, called a cath test. They got some good pictures of her heart and her pressured were better than expected. After returning back from this proceedure she decided to give us a scare again and kept dropping her oxygen levels. After about 3 hours of adjusting mediences and a few other things she seemed to settle out.
They are coming to the conculsions from her dropping her stats again today and the outcome of the cath lab that we need to move foward with the second surgery that she should have had before she became a part of the transplant list. This surgery would not change her begining on the list, Grace will definately still require a transplant, they just feel that she will not be able to wait long enough for one. He sano that is in her heart from her first surgery, she has out grown, and they feel this is the reason she keeps dropping her stats. They think her function has improved enough that she may be able to go through with the surgery. This again would not fix her long term, but would help her wait.
They are having a meeting tomorrow morning at 7:30a.m. to make final decsions, but it looks like the surgery will most likely take place in the next week, the worry is that this surgery has to be done, in a normal child there is not much risk in this surgery. Because of Grace;s heartattack the risk has grown quite large. We are in a tough spot, let our daughter take this risk, or let her be in pain and wait for a heart and risk losing her while waiting.
There could be alot of benfits from this surgery though, it is a long shot, but if she recover well, she may even be able to go home after a month or two and wait at home for a heart.
I will try and update with results from tomorrow before the weekend.
Thank you again for all your support!
They are coming to the conculsions from her dropping her stats again today and the outcome of the cath lab that we need to move foward with the second surgery that she should have had before she became a part of the transplant list. This surgery would not change her begining on the list, Grace will definately still require a transplant, they just feel that she will not be able to wait long enough for one. He sano that is in her heart from her first surgery, she has out grown, and they feel this is the reason she keeps dropping her stats. They think her function has improved enough that she may be able to go through with the surgery. This again would not fix her long term, but would help her wait.
They are having a meeting tomorrow morning at 7:30a.m. to make final decsions, but it looks like the surgery will most likely take place in the next week, the worry is that this surgery has to be done, in a normal child there is not much risk in this surgery. Because of Grace;s heartattack the risk has grown quite large. We are in a tough spot, let our daughter take this risk, or let her be in pain and wait for a heart and risk losing her while waiting.
There could be alot of benfits from this surgery though, it is a long shot, but if she recover well, she may even be able to go home after a month or two and wait at home for a heart.
I will try and update with results from tomorrow before the weekend.
Thank you again for all your support!
Saturday, April 2, 2011
April 2, 2011
Ok, so today is much better, besides the fact Kirk had to leave to go back to work. We are settled and know our way around a little more. Emily is coming on Monday!! I can't wait!
Grace is doing good. As stable as she can be. She is on pain med's that knock her out but ever couple of hours she opens her eyes for a few minutes. This is what makes everything ok. To see those big beautiful eyes. She can not make any sounds or smile because of the ventilator but you can read in her eyes the comfort she has when we are here. I wish I could just explain to her that this is not forever and soon mommy will be able to hold you again. For now she seems happier and in less pain than last week. They are hoping to just keep all meds the same for know and hope she will stay in this condition for as long as she can.
It is confrimed all test's are done and as of yesterday Grace was put on the transplant list! So now we just wait.
Grace is doing good. As stable as she can be. She is on pain med's that knock her out but ever couple of hours she opens her eyes for a few minutes. This is what makes everything ok. To see those big beautiful eyes. She can not make any sounds or smile because of the ventilator but you can read in her eyes the comfort she has when we are here. I wish I could just explain to her that this is not forever and soon mommy will be able to hold you again. For now she seems happier and in less pain than last week. They are hoping to just keep all meds the same for know and hope she will stay in this condition for as long as she can.
It is confrimed all test's are done and as of yesterday Grace was put on the transplant list! So now we just wait.
Friday, April 1, 2011
Thursday, March 31, 2011
In Gainsville for Transplant
So where do I start? Umm Lets go back two days. We were going to do a proceedure to tell weather we were going to have surgery or a transplant. They came in on Tuesday and said that they did not want to do the procedure becuase it involed putting her to sleep and they were worried she would not come out of it. So the plan became on Tuesday to move to Gainsville on Wednesday. We were then told that night that they already have 5 kids waiting for hearts in Gainsville, that our chances of getting a heart any time soon would not be large, and that we could start up the paper work and labs in Jax and stay there till a heart arrived unless her situation got worse. Well that night that is exactly what happen. She kept destating all night. Then at 6am I fed her a bottle and she destated only this time we could not get her to recover.
This is when all the craziness began. The room quickly became full of doctors, nurse's, and surgeons, trying to figure out what would be the best plan. At one point we were doing surgery, the next moving to gainsville. They finally got her somewhat stable by 10am after going back and forth for 4 hours.
They wanted to go by helicpoter because they wanted her to get there as quickly as possilbe. Of course we were have a huge strom with tornado watches. They did not want to wait till the next day to transport. The doctor on the floor called in the on call doctor and he dedided he was going to leave and take the ride with Grace in the abulance with the parimedics in case anything happen along the way.
Thank god, she made it fine to Gainsville. I was not allowed to ride in the back with her. So I decided to follow in my car so I would have transportation. I stopped home first to give Emily a kiss and hug. Then off to Gainsville. When I arrived Grace had already been there for two hours. She was still not stable, so they made me wait another hour before they came to get me.
The into the confrence room we went. Our conversation was about the transplants. They expressed how they do do mechincal hearts here, but it was not a option for Grace. Disappointment one! They then went on to explain how critical she actually is. Also how they have so many kids here waiting for hearts. Graces blood type is a O, they also have two other kids here that are O and need the same size heart. They did say though it comes down alot to the antibodies that the kids have delevoped and that besides blood type and size, it doesn't matter how long a kid has been here if they look like they will fit the heart better than another they are the one that will get the heart. They did continue on also to say how alot of parnents don't always continue on when it comes to a transplant because, they don't want to deal with waiting for a heart, then the fact it may be rejected in the first few months. They have children that are in there 20's with the same heart. But if you go by the books the heart should last 5 to 10 years, and you can only get 2 hearts in your life. The parents can't bear to come back and go through this again so soon. There is also if the heart fails, when they bring her back it could cause serve brain damage. They asked us the question, if her heart fails do they want us to resesatae her? I was shocked to hear this question? Give up now? We made that decsion at 6 months pregnet, that if we were going to do this we were going the whole way no matter what. I told them that thaat was not a option. We wanted everything possible to be done that could be done.
We put the breathing tube in today along with a few other proceedures, with the goal in mind to stablize her. These were all risky, but once again Grace, is amazing and desipte some small details came through with flying colors.
So know the hardest part. Obvesily she could turn at any point, and also there are other problems that can come when you wait in a bed unconsecces for a heart for months, but if we can get through this, we just need to pray for a heart.
Kirk and I gave blood and did our test's today, and the process has been started.
All we can ask is to pray! Pray! Pray! It is all a waiting game now.
This is when all the craziness began. The room quickly became full of doctors, nurse's, and surgeons, trying to figure out what would be the best plan. At one point we were doing surgery, the next moving to gainsville. They finally got her somewhat stable by 10am after going back and forth for 4 hours.
They wanted to go by helicpoter because they wanted her to get there as quickly as possilbe. Of course we were have a huge strom with tornado watches. They did not want to wait till the next day to transport. The doctor on the floor called in the on call doctor and he dedided he was going to leave and take the ride with Grace in the abulance with the parimedics in case anything happen along the way.
Thank god, she made it fine to Gainsville. I was not allowed to ride in the back with her. So I decided to follow in my car so I would have transportation. I stopped home first to give Emily a kiss and hug. Then off to Gainsville. When I arrived Grace had already been there for two hours. She was still not stable, so they made me wait another hour before they came to get me.
The into the confrence room we went. Our conversation was about the transplants. They expressed how they do do mechincal hearts here, but it was not a option for Grace. Disappointment one! They then went on to explain how critical she actually is. Also how they have so many kids here waiting for hearts. Graces blood type is a O, they also have two other kids here that are O and need the same size heart. They did say though it comes down alot to the antibodies that the kids have delevoped and that besides blood type and size, it doesn't matter how long a kid has been here if they look like they will fit the heart better than another they are the one that will get the heart. They did continue on also to say how alot of parnents don't always continue on when it comes to a transplant because, they don't want to deal with waiting for a heart, then the fact it may be rejected in the first few months. They have children that are in there 20's with the same heart. But if you go by the books the heart should last 5 to 10 years, and you can only get 2 hearts in your life. The parents can't bear to come back and go through this again so soon. There is also if the heart fails, when they bring her back it could cause serve brain damage. They asked us the question, if her heart fails do they want us to resesatae her? I was shocked to hear this question? Give up now? We made that decsion at 6 months pregnet, that if we were going to do this we were going the whole way no matter what. I told them that thaat was not a option. We wanted everything possible to be done that could be done.
We put the breathing tube in today along with a few other proceedures, with the goal in mind to stablize her. These were all risky, but once again Grace, is amazing and desipte some small details came through with flying colors.
So know the hardest part. Obvesily she could turn at any point, and also there are other problems that can come when you wait in a bed unconsecces for a heart for months, but if we can get through this, we just need to pray for a heart.
Kirk and I gave blood and did our test's today, and the process has been started.
All we can ask is to pray! Pray! Pray! It is all a waiting game now.
Monday, March 28, 2011
One more Day till we know the out come
Sunday, March 27, 2011
Heart Attack
On Thursday 3/24/2011 in early afternoon, I left to go to work for a few hours after spending a great morning with Grace. Kirk called in a panic to come home that the baby was white and been throwing up. I checked her levels when I got home and they were down. We drove her to the emergency room and she was admitted imendately. They told us that her heart was failing but could not explain why. They started tests imediately. By Firday night they had come to the conculsion, that Grace had a Heart attack Thursday afternoon.
We could not believe what they were telling us. I know that we were told that this could happen, but a baby, having a heart attack? We knew something was wrong but were shocked to hear this.
Grace is stable know. The worry know is to see how much damage was done to the heart during the heart attack. The heart is still very swollen at this point. Grace will have a cafe test done on Wednesday. The results from this test will hopefully give us a accurate number of how much damage has been done. At that point they will make the decsion weather to move foward with surgery early next week, or if there was to much damage done. Grace will be transported to Gainsville and put on a transplant waiting list.
We definately don't want to go the transplant way. We are praying that surgery will be able to be done, and will work. A transplant is very risky, besides the fact that she can only wait so long for a heart, and it is not easy to get a heart for a nine pound baby.
So please everyone pray that we will be able to move foward with surgery instead of a transplant. I will update soon to keep you all posted.
We could not believe what they were telling us. I know that we were told that this could happen, but a baby, having a heart attack? We knew something was wrong but were shocked to hear this.
Grace is stable know. The worry know is to see how much damage was done to the heart during the heart attack. The heart is still very swollen at this point. Grace will have a cafe test done on Wednesday. The results from this test will hopefully give us a accurate number of how much damage has been done. At that point they will make the decsion weather to move foward with surgery early next week, or if there was to much damage done. Grace will be transported to Gainsville and put on a transplant waiting list.
We definately don't want to go the transplant way. We are praying that surgery will be able to be done, and will work. A transplant is very risky, besides the fact that she can only wait so long for a heart, and it is not easy to get a heart for a nine pound baby.
So please everyone pray that we will be able to move foward with surgery instead of a transplant. I will update soon to keep you all posted.
Wednesday, March 23, 2011
Heading back!
Sorry this image is a little blurry, but wanted to update you with my beatiful baby! She is doing well. She started simling alot in the past few weeks. She is really such a happy baby!
We went on Monday to see Doctor Lacy. Grace's oxygen level has dropped. We are not sure exactly why at this point. We are scheduled to have a test done on April 8, 2011 which will hopefully detrime this. After this test we will schedule for surgery some time in the next two to three weeks after. We are expecting to have at least two more surgery's anyway. I guess it was just a shock for it to be so soon. And I guess it is becuase they do not know why. They don't think that she has out grow it yet at this point. They are just unsure. After the 8th we will have more answers.
I know she will be fine. She is strong and such a little fighter.
Will update soon.
Friday, January 28, 2011
Janurary 28, 2011
So we left and went home on Janurary 11, 2011. I was so excited yet scared to death. It took a few days, but we adjusted wonderfully! She had a few appiontments in the last 2 weeks, all showing her heart as doing wonderful. We were having a slight problem with eating, but with persistance and we know we could over come it.
My 4 year old Emily came down with a cough, to her it is not a big deal, in a 6 week old with a low immune system and half a heart this is a huge deal. Grace started to develop a cough on Monday the 24th after we were just at the heart doctor. By tuesday we were starting to worry. By wednesday morning I took her to the doctor. The doctor sent us to Flager hospital for a rsv test. The results came back that afternoon negitive. Thursday morning the cough became even worse. I drove her up to Wolsons Children Hospital Thursday, they rushed her into the emergency room once they checked her stats, they then brought her up to the ICU. Today it is Firday night and we are still in the ICU but grace looks great. We are hoping if her stats stay the same we will move to the 6th floor tomorrow with a hopefully discharge sunday or monday.
What a reality check. She can go from so strong one day to the ICu the next. Her heart is very fragial even though it is doing well. Until all 3 surgeries are completed we need to be on toes and relize that things can change at any moment.
Cerish every moment things can change in a second!
My 4 year old Emily came down with a cough, to her it is not a big deal, in a 6 week old with a low immune system and half a heart this is a huge deal. Grace started to develop a cough on Monday the 24th after we were just at the heart doctor. By tuesday we were starting to worry. By wednesday morning I took her to the doctor. The doctor sent us to Flager hospital for a rsv test. The results came back that afternoon negitive. Thursday morning the cough became even worse. I drove her up to Wolsons Children Hospital Thursday, they rushed her into the emergency room once they checked her stats, they then brought her up to the ICU. Today it is Firday night and we are still in the ICU but grace looks great. We are hoping if her stats stay the same we will move to the 6th floor tomorrow with a hopefully discharge sunday or monday.
What a reality check. She can go from so strong one day to the ICu the next. Her heart is very fragial even though it is doing well. Until all 3 surgeries are completed we need to be on toes and relize that things can change at any moment.
Cerish every moment things can change in a second!
Wednesday, January 5, 2011
23 Days Old
Grace is doing wonderful! Sorry for the delay on new posts. We have been busy with tests and recovering! She is doing wonderful. We moved to the 6th floor, out of ICU on Monday. We are way ahead of schedule. She also started feeds on Monday. She is doing ok with it. We are definately going to get out of here ahead of schedule. She has been through so much in the last 3 weeks, but is definately a fighter!! I will update later this week. Thank you for thinking of us!
Subscribe to:
Posts (Atom)