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.
Subscribe to:
Posts (Atom)