Gonzalez's Heart
Scroll down and listen to first audio posts then these.
Saturday, April 29, 2006
Gonzalez's Heart
Click the box below for my sweet surprise. This is at full volume also. That is how quite it is (you have to click to find out what "it" is).
I found some simply thick in Wyoming, Mn (since we have none here). The pharmacist in the Wyoming hospital pharmacy told me who this pharmacy should contact there to help them figure out how to get it here. Thank goodness for some positive helpers. Sal dropped the kids off a little bit ago and is going to Wyoming now to buy it.
They did feedings all night with the rice cereal and he only took 2ml or so each time. I then used the last of the simply thick at the 10am feeding and he drank 18ml. YEAH!!! Praise the Lord!!! The doc's came in later and said how they are impressed at how well he all of a sudden is doing. Also, he had a chest x-ray that was not scheduled because they thought he may have problems and they looked good. Another, say it with me, PRAISE THE LORD!!! Let's keep the prayers rolling.
More audio to come. EXCITING new find.....
Click the box below for my sweet surprise. This is at full volume also. That is how quite it is (you have to click to find out what "it" is).
I found some simply thick in Wyoming, Mn (since we have none here). The pharmacist in the Wyoming hospital pharmacy told me who this pharmacy should contact there to help them figure out how to get it here. Thank goodness for some positive helpers. Sal dropped the kids off a little bit ago and is going to Wyoming now to buy it.
They did feedings all night with the rice cereal and he only took 2ml or so each time. I then used the last of the simply thick at the 10am feeding and he drank 18ml. YEAH!!! Praise the Lord!!! The doc's came in later and said how they are impressed at how well he all of a sudden is doing. Also, he had a chest x-ray that was not scheduled because they thought he may have problems and they looked good. Another, say it with me, PRAISE THE LORD!!! Let's keep the prayers rolling.
More audio to come. EXCITING new find.....
Gonzalez's Heart
Ok, so I did not get the surprise in today. Hopefully tomorrow. Just wanted to let you all know so you did not think I was leaving you hanging on purpose. While you are all waiting, what do you think it might be? Let me know. Kelly has her guess in.
Jaden was doing fine when I left. Unfortunately, they did not get the thicken stuff by his next feeding so we had to use the old combination we were using and he did better then in the past but not as good with the stuff Steph found.. I will search down the thicken stuff and go buy it first thing in the AM since they do not know when or if they can get it.
Robyn came with this morning to see Jaden and left her glitter from her shirt all over Jaden and the room. I was picking it off all day :-) Then tonight Kelly picked me up and we went and got our hair done. We also went out for Thai food (yummy). She then decided she would have a sleep over because I had a rough morning I guess. How sweet is she. She also wanted to keep me up late and watch the midnight bats fly outside or something.
Anyway I will update you all tomorrow. Nite Nite, Steph
Ok, so I did not get the surprise in today. Hopefully tomorrow. Just wanted to let you all know so you did not think I was leaving you hanging on purpose. While you are all waiting, what do you think it might be? Let me know. Kelly has her guess in.
Jaden was doing fine when I left. Unfortunately, they did not get the thicken stuff by his next feeding so we had to use the old combination we were using and he did better then in the past but not as good with the stuff Steph found.. I will search down the thicken stuff and go buy it first thing in the AM since they do not know when or if they can get it.
Robyn came with this morning to see Jaden and left her glitter from her shirt all over Jaden and the room. I was picking it off all day :-) Then tonight Kelly picked me up and we went and got our hair done. We also went out for Thai food (yummy). She then decided she would have a sleep over because I had a rough morning I guess. How sweet is she. She also wanted to keep me up late and watch the midnight bats fly outside or something.
Anyway I will update you all tomorrow. Nite Nite, Steph
Friday, April 28, 2006
Gonzalez's Heart
Oh you guys I am so happy right now. Steph I want to thank you more than words can say. As you all know, Jaden has not been eating at all through the bottle. We have been lucky to get him to drink 1ml in a feeding which is basically drops. The most he had was 4ml and that was one time.
Well Steph, you made me prove the speech therapist and nurse wrong. I printed out the info on the "simply thick" you found and I marched into the room right at Jaden's feeding time and I asked them if we could try using this product to solve the thinking problem (or lack there of it I should say). Well, can you all guess what they said? They said that does not work any better then the cereal. They said that studies are great but they have done trial and error and this stuff won't make a difference. Well I would not budge and I said, "everyone's breast milk is different and we don't know how it will work since we have not tried mine." So they got some of it and mixed it up. Well guess what happened?
Jaden not only drank, but we had to add more milk mixture to the bottle. He ended up drinking 18ml. I about died on the spot. I can not get this grin off my face. I told them anything was possible, you just have to try. They did not know how to respond to this. I said "obviously this worked really well." The speech guy then said well this is VERY expensive. He said it is $1 a packet. We would use one at each feeding. ($8 a day minimum). He said the other problem now is that he only has 2 packets left so what did I want to do. I said (as Steph found there is a pharmacy in Woodbury that has it), I will go buy it then. At the end of our conversation, he said "I guess we should be able to figure out how to get some."
I was so excited to have stirred up this excitement. These people are wonderful and smart but many of them just want to go by the average and nothing more. They have all been so discouraging about breast feeding. I am here to show them all that there is so much more to life then the average. I even told him that Jaden has not been the average as he "sailed" through all of this so far, so to hold on because Jaden is just waiting for the right moment and then he is going to get his sprinting shoes on.
Of course, this could have been a one time thing to happen but it opened these peoples eyes that you have to really try to know. I still have no work on when ENT is coming. And I do not have your cool surprise ready quite yet. Keep the prayers flowing, they seem to have worked today with Jaden's feeding.
Love you all, Steph
p.s. Steph, I don't mind at all that you are a "blog hog."
Oh you guys I am so happy right now. Steph I want to thank you more than words can say. As you all know, Jaden has not been eating at all through the bottle. We have been lucky to get him to drink 1ml in a feeding which is basically drops. The most he had was 4ml and that was one time.
Well Steph, you made me prove the speech therapist and nurse wrong. I printed out the info on the "simply thick" you found and I marched into the room right at Jaden's feeding time and I asked them if we could try using this product to solve the thinking problem (or lack there of it I should say). Well, can you all guess what they said? They said that does not work any better then the cereal. They said that studies are great but they have done trial and error and this stuff won't make a difference. Well I would not budge and I said, "everyone's breast milk is different and we don't know how it will work since we have not tried mine." So they got some of it and mixed it up. Well guess what happened?
Jaden not only drank, but we had to add more milk mixture to the bottle. He ended up drinking 18ml. I about died on the spot. I can not get this grin off my face. I told them anything was possible, you just have to try. They did not know how to respond to this. I said "obviously this worked really well." The speech guy then said well this is VERY expensive. He said it is $1 a packet. We would use one at each feeding. ($8 a day minimum). He said the other problem now is that he only has 2 packets left so what did I want to do. I said (as Steph found there is a pharmacy in Woodbury that has it), I will go buy it then. At the end of our conversation, he said "I guess we should be able to figure out how to get some."
I was so excited to have stirred up this excitement. These people are wonderful and smart but many of them just want to go by the average and nothing more. They have all been so discouraging about breast feeding. I am here to show them all that there is so much more to life then the average. I even told him that Jaden has not been the average as he "sailed" through all of this so far, so to hold on because Jaden is just waiting for the right moment and then he is going to get his sprinting shoes on.
Of course, this could have been a one time thing to happen but it opened these peoples eyes that you have to really try to know. I still have no work on when ENT is coming. And I do not have your cool surprise ready quite yet. Keep the prayers flowing, they seem to have worked today with Jaden's feeding.
Love you all, Steph
p.s. Steph, I don't mind at all that you are a "blog hog."
Thursday, April 27, 2006
Gonzalez's Heart
Wednesday night Tammy, mom and Robyn came to visit. We had a little party in Jaden's room. Mom thanks again for the wonderful presents. The color coordination was wonderful. We stayed until around 11pm or so. Jaden was not feeling that well and when we tried to leave he would cry so it made it really hard. We then raided the fridge at the RMH and then Robyn and Tammy had a sleep over. We did not get to bed until 12:30am. We all had fun. Robyn is spending the night again tonight. This does make my week go by a lot faster and it helps me to get my mind somewhere else.
These last 2 days have been a little difficult for me with Jaden. He has not been drinking hardly anything from his bottles. We have tried 3 different nipples and have been thickening the breast milk but have a really hard time because the protein in the breast milk does not allow the thickener to stick. So we are having some trouble with that.
They also want to send Ears Nose and Throat in tomorrow to do a scope of his vocal cords and folds.. They are worried since his voice is still so soft and he is not eating well that maybe he has some damage done to his vocal folds. So we have hit a new set back as not only does Jaden need his milk thickened, the breast milk not adapting to the thickener, him having a hard time figuring out how to use the bottle, but now also his throat stuff. I have asked for somewhat of a time frame until we might get to leave and they said a minimum of 2 weeks. (I had to ask many people before even getting this answer, so I am thinking that might mean longer then shorter). Of course they are not sure how long until we can get everything figured out but it will be awhile. They said that if nothing major is wrong with his vocal stuff, that it could take up to 6 months for him to have it all normal and be able to hear him well. Of course this means possibly 6 months before he may be able to eat normal. I will let you know the details tomorrow from the test.
I also have a cool surprise I am working on for the blog. It will probably take me a few days but keep checking back. I am hoping it works and it will be really cool for you all. Lets just say that it may help you feel like you are able to experience Jaden better. I know this is a teaser but it is something exciting for me to work on and keep my mind on other things.
Hope you all have had a good week so far and I will write more tomorrow. Love you all, Steph
Wednesday night Tammy, mom and Robyn came to visit. We had a little party in Jaden's room. Mom thanks again for the wonderful presents. The color coordination was wonderful. We stayed until around 11pm or so. Jaden was not feeling that well and when we tried to leave he would cry so it made it really hard. We then raided the fridge at the RMH and then Robyn and Tammy had a sleep over. We did not get to bed until 12:30am. We all had fun. Robyn is spending the night again tonight. This does make my week go by a lot faster and it helps me to get my mind somewhere else.
These last 2 days have been a little difficult for me with Jaden. He has not been drinking hardly anything from his bottles. We have tried 3 different nipples and have been thickening the breast milk but have a really hard time because the protein in the breast milk does not allow the thickener to stick. So we are having some trouble with that.
They also want to send Ears Nose and Throat in tomorrow to do a scope of his vocal cords and folds.. They are worried since his voice is still so soft and he is not eating well that maybe he has some damage done to his vocal folds. So we have hit a new set back as not only does Jaden need his milk thickened, the breast milk not adapting to the thickener, him having a hard time figuring out how to use the bottle, but now also his throat stuff. I have asked for somewhat of a time frame until we might get to leave and they said a minimum of 2 weeks. (I had to ask many people before even getting this answer, so I am thinking that might mean longer then shorter). Of course they are not sure how long until we can get everything figured out but it will be awhile. They said that if nothing major is wrong with his vocal stuff, that it could take up to 6 months for him to have it all normal and be able to hear him well. Of course this means possibly 6 months before he may be able to eat normal. I will let you know the details tomorrow from the test.
I also have a cool surprise I am working on for the blog. It will probably take me a few days but keep checking back. I am hoping it works and it will be really cool for you all. Lets just say that it may help you feel like you are able to experience Jaden better. I know this is a teaser but it is something exciting for me to work on and keep my mind on other things.
Hope you all have had a good week so far and I will write more tomorrow. Love you all, Steph
Tuesday, April 25, 2006
I am posting a few pictures. The first 2 are of the kids holding Jaden from this weekend. Ethan would not give him to any of us to hold. It was so cute how much they both cared. The 3rd is Jaden's "guardian angel" nurse Steve. He we believe was put in our path to give the love and support that Jaden needed to help him get through this. The 4th is what Kelly said looked like Dennis the Menace hair. How cute. And the last is of grandma holding Jaden. How cute they all are. (I have been having technical difficulties so hopefully these will post. If not check back tomorrow).
Twila from church came to visit today and was the first from our church family to hold him. Thank you Twila for the wonderful gifts. Jaden already read the book you gave him many times. He is a great story teller. Mom and Kelly came tonight and had dinner with me. They both enjoyed holding Jaden with all of the lines and other stuff gone.
Jaden's x-ray did not go as I had hoped and prayed for. When he swallowed breast milk, a little of it got into his airway. When they gave him a thicker consistnecy, it went fine. What happens is because he has to breath so much faster (which makes it harder), his brain does not tell his flap that protects his airway fast enough to close with the faster flowing breast milk. So for now he has to have breast milk mixed with rice cereal (to thicken it) and then also with fortifier (which is powder formula) to help bond the breast milk and rice cereal together.
So for now, he will not be able to breast feed. This makes me extremely sad :-(So we need lots and lots of prayers so that he is able to get strong enough to be able to close that flap so he can nurse from his mommy. It is possible but could take a very long time. I told the doctors that he is going to study hard and learn it really fast so he can get an "A" on his exam and start nursing.
I will let you know how tomorrow goes. Love to you all, Steph
Twila from church came to visit today and was the first from our church family to hold him. Thank you Twila for the wonderful gifts. Jaden already read the book you gave him many times. He is a great story teller. Mom and Kelly came tonight and had dinner with me. They both enjoyed holding Jaden with all of the lines and other stuff gone.
Jaden's x-ray did not go as I had hoped and prayed for. When he swallowed breast milk, a little of it got into his airway. When they gave him a thicker consistnecy, it went fine. What happens is because he has to breath so much faster (which makes it harder), his brain does not tell his flap that protects his airway fast enough to close with the faster flowing breast milk. So for now he has to have breast milk mixed with rice cereal (to thicken it) and then also with fortifier (which is powder formula) to help bond the breast milk and rice cereal together.
So for now, he will not be able to breast feed. This makes me extremely sad :-(So we need lots and lots of prayers so that he is able to get strong enough to be able to close that flap so he can nurse from his mommy. It is possible but could take a very long time. I told the doctors that he is going to study hard and learn it really fast so he can get an "A" on his exam and start nursing.
I will let you know how tomorrow goes. Love to you all, Steph
Monday, April 24, 2006
Gonzalez's Heart
Just a quick update and prayer request. Overall, Jaden is doing very well. Everything looks good and all of his tubes and lines are out but his feeding tube and then one other line. We started bottle feeding today and it went ok. It is so amazing what steps and things you have to do to teach a child to drink from a bottle. It is so different when you have a baby and it nurses right away. The process to teach a 3 week old baby who has never eaten on his own and has had heart surgery is so intense. You have to make sure they are not stimulated by light and noises around them or they get to stressed out and pretend to be sleeping. You have to watch his breathing, his nostrils for flaring his mouth and you even have to hold them a little different. There are so many things. Heart babies get very stressed when eating and if you do not catch the signs then other problems can occur.
The prayer request is for tomorrow. Jaden will be having an x-ray at 1pm with him drinking from a bottle and they will watch to see how things go. Heart babies do not have strong neck/throat muscles so sometimes when they drink it can go into the lungs. They also can have reflux. If either of these problems happen, he may not ever get to nurse. When we fed him his first feeding, he was choking some on the milk and then he sounded raspy for awhile after. This is when they were concerned if he may have a problem. So please pray that he is fine and will be able to drink without the milk getting into his lungs. This is such an important part of parenting for me. When the cardiologist was explaining all of this to me, I had to do everything to hold back the tears. I do not want to worry over it unless I have to.
Anyway, I will let you all know how it goes tomorrow. Thanks to everyone for their help. Mom, I hope getting Ash ready for her dance pictures was not to difficult and thanks for watching them so many days each week. Thanks to all of you who will be helping with the kids (watching them and driving them around), and thank you all who are bringing meals to my family. Karen, I have been meaning to call you and thank you for the wonderful care package and cute baby blanket you sent. The snacks have really come in handy and I will be bringing the blanket to the hospital tomorrow.
I love you all and we are so lucky to have you all in our lives. We have such an incredible support system. Love you all!!!!!
Love, Steph
Just a quick update and prayer request. Overall, Jaden is doing very well. Everything looks good and all of his tubes and lines are out but his feeding tube and then one other line. We started bottle feeding today and it went ok. It is so amazing what steps and things you have to do to teach a child to drink from a bottle. It is so different when you have a baby and it nurses right away. The process to teach a 3 week old baby who has never eaten on his own and has had heart surgery is so intense. You have to make sure they are not stimulated by light and noises around them or they get to stressed out and pretend to be sleeping. You have to watch his breathing, his nostrils for flaring his mouth and you even have to hold them a little different. There are so many things. Heart babies get very stressed when eating and if you do not catch the signs then other problems can occur.
The prayer request is for tomorrow. Jaden will be having an x-ray at 1pm with him drinking from a bottle and they will watch to see how things go. Heart babies do not have strong neck/throat muscles so sometimes when they drink it can go into the lungs. They also can have reflux. If either of these problems happen, he may not ever get to nurse. When we fed him his first feeding, he was choking some on the milk and then he sounded raspy for awhile after. This is when they were concerned if he may have a problem. So please pray that he is fine and will be able to drink without the milk getting into his lungs. This is such an important part of parenting for me. When the cardiologist was explaining all of this to me, I had to do everything to hold back the tears. I do not want to worry over it unless I have to.
Anyway, I will let you all know how it goes tomorrow. Thanks to everyone for their help. Mom, I hope getting Ash ready for her dance pictures was not to difficult and thanks for watching them so many days each week. Thanks to all of you who will be helping with the kids (watching them and driving them around), and thank you all who are bringing meals to my family. Karen, I have been meaning to call you and thank you for the wonderful care package and cute baby blanket you sent. The snacks have really come in handy and I will be bringing the blanket to the hospital tomorrow.
I love you all and we are so lucky to have you all in our lives. We have such an incredible support system. Love you all!!!!!
Love, Steph
Sunday, April 23, 2006
Gonzalez's Heart
I am so sorry I have not written for a few days. We have had a busy couple of days. Robyn and I had a great time shopping. She thought since we had a few hours we would make it to a few places but only made it to one. We both bought some really cute clothes.
Friday they moved Jaden to a room all the way at the end of the hall. It is the place they go on their way out (to the floor as they call it). We have had many things happen in our rooms. This last one we were in we had an 11 year old come in because he over dosed on his medication on purpose. He told the doctor that his sister always told him she hated him and that is why he did it. It was a very sad thing to hear and see. We have not been anxious to move to the Children's floor because we go from one nurse per child who is in the room always to one nurse per every four who is not in the room. However, after this 11 year old came to our room, I guess you could say we were ready.
Saturday afternoon we got the word that Jaden was moving to the floor. We were very nervous. This means one step closer to home though so it helps some. So we were moved to the floor and it has been pretty good. Jaden still is hoarse and can not really be heard when he cries so we do get nervous that no one will know that he is crying if we are not there. They say his stats will tell them he is crying. He has been doing good sucking his pacifier so they talked about starting to feed with a bottle or breast feed soon.
So this morning, they took out his last chest tube and said he could start tomorrow with bottle and breast because he is doing so good. We were a little surprised because just yesterday they were talking more like Tuesday or Wednesday. I will meet with the speech therapist at 10am and we will hopefully try. There are many things that have to fall into place in order for this to happen and his stats have to remain at certain levels in order to continue. So I am very excited and actually nervous as I hope it goes well because I am really ready to nurse.
Sal and the kids got here late Friday night and we have all had a good time. We went to target today and bought each of the kids a toy and they both got to hold Jaden a few times this weekend. Of course Ethan kept asking when his feeding tube will come out. But this is the first time Ethan actually wanted to hold him and it was the sweetest thing in the world. He showed so much love for Jaden. We have all had a good time and enjoyed ourselves. They are getting ready to leave and we are all not wanting the moment to come. But hopefully soon we will all get to go home.
Have a good rest of the day.
Love, Steph
I am so sorry I have not written for a few days. We have had a busy couple of days. Robyn and I had a great time shopping. She thought since we had a few hours we would make it to a few places but only made it to one. We both bought some really cute clothes.
Friday they moved Jaden to a room all the way at the end of the hall. It is the place they go on their way out (to the floor as they call it). We have had many things happen in our rooms. This last one we were in we had an 11 year old come in because he over dosed on his medication on purpose. He told the doctor that his sister always told him she hated him and that is why he did it. It was a very sad thing to hear and see. We have not been anxious to move to the Children's floor because we go from one nurse per child who is in the room always to one nurse per every four who is not in the room. However, after this 11 year old came to our room, I guess you could say we were ready.
Saturday afternoon we got the word that Jaden was moving to the floor. We were very nervous. This means one step closer to home though so it helps some. So we were moved to the floor and it has been pretty good. Jaden still is hoarse and can not really be heard when he cries so we do get nervous that no one will know that he is crying if we are not there. They say his stats will tell them he is crying. He has been doing good sucking his pacifier so they talked about starting to feed with a bottle or breast feed soon.
So this morning, they took out his last chest tube and said he could start tomorrow with bottle and breast because he is doing so good. We were a little surprised because just yesterday they were talking more like Tuesday or Wednesday. I will meet with the speech therapist at 10am and we will hopefully try. There are many things that have to fall into place in order for this to happen and his stats have to remain at certain levels in order to continue. So I am very excited and actually nervous as I hope it goes well because I am really ready to nurse.
Sal and the kids got here late Friday night and we have all had a good time. We went to target today and bought each of the kids a toy and they both got to hold Jaden a few times this weekend. Of course Ethan kept asking when his feeding tube will come out. But this is the first time Ethan actually wanted to hold him and it was the sweetest thing in the world. He showed so much love for Jaden. We have all had a good time and enjoyed ourselves. They are getting ready to leave and we are all not wanting the moment to come. But hopefully soon we will all get to go home.
Have a good rest of the day.
Love, Steph
Thursday, April 20, 2006
Yesterday was a good day. Jaden got a lot of loving and holding time in. I was at the hospital with him all day. Mom came around 4pm and was the 1st loved one to hold Jaden. It was really nice for the 2 of us to be there with him. After that, mom and I went back and had dinner at the RMH. Robyn and dad came over after dinner and we went back to give Jaden some more lovin. Robyn had a sleep over to help keep me company. Thanks sis.Today went good. I was at the hospital all day again and held him for a few hours. I was so tired and wanted to go back and take a nap but Jaden would not let me leave. He was awake and happy and looking all over so I couldn't put him down. He finally let me leave and I came back and took a nap. After dinner I went back and then Robyn came again when she was done with work. They took 2 of his chest tubes out this late afternoon. After they do that they take an x-ray and they saw that he has a little air in his lung. This can happen when taking these tubes out so they have to watch him carefully. They will do another x-ray tonight and if it gets bad or does not go away they may have to put it back in. We will see tomorrow. Robyn is having another sleep over and we will probably go shopping tomorrow. YEAH!!! I need some new clothes.
MOM, to answer your question from your comment the other day, not only do I have the best sister in the world, but the best everyone in the world. Sal and I have been truly blessed by God to have you and all the rest of the incredible people in our lives. We are very lucky.
Well that is good for tonight. I will let you know about the chest tubes tomorrow.
Love, Steph
Wednesday, April 19, 2006
Gonzalez's Heart
Cindy, you are right. One of the nurses already said that we better plan on calling him "Super Star" when we get home because that is the only name he will know. And yes dad you are so funny. I know you think you heard him say grandpa. It will be great as we will be able to understand him say grandpa because guess what? They took the ventilator out around 2pm and he is doing WONDERFULLY!!!
It is so exciting to actually be able to see his sweet face. I have only seen it in full without anything about 3 times or so. It is nice to finally get a look at how our boy really looks. I have been pestering the nurse for awhile and she is about to let me hold him. I can't wait!!! And do you guys know what this means? His first visitor tonight will probably get to hold him also.
This day has been so great and sad all in one. God probably took Amber yesterday on purpose. He knew I would have the great joys of Jaden's advancement to help me deal better with the loss. Who knows.
There will be pictures of Jaden with out the ventilator posted later this evening. Make sure to check back then to see how super cute he is.
Love to you all. Sorry I don't want to write anymore, but I can be holding Jaden right now and I guess I could say, I would rather be doing that.
Love, Steph
Cindy, you are right. One of the nurses already said that we better plan on calling him "Super Star" when we get home because that is the only name he will know. And yes dad you are so funny. I know you think you heard him say grandpa. It will be great as we will be able to understand him say grandpa because guess what? They took the ventilator out around 2pm and he is doing WONDERFULLY!!!
It is so exciting to actually be able to see his sweet face. I have only seen it in full without anything about 3 times or so. It is nice to finally get a look at how our boy really looks. I have been pestering the nurse for awhile and she is about to let me hold him. I can't wait!!! And do you guys know what this means? His first visitor tonight will probably get to hold him also.
This day has been so great and sad all in one. God probably took Amber yesterday on purpose. He knew I would have the great joys of Jaden's advancement to help me deal better with the loss. Who knows.
There will be pictures of Jaden with out the ventilator posted later this evening. Make sure to check back then to see how super cute he is.
Love to you all. Sorry I don't want to write anymore, but I can be holding Jaden right now and I guess I could say, I would rather be doing that.
Love, Steph
Gonzalez's Heart
Thank you all for being so patient. I was not by the computer yesterday at all. Before the update, Sarah, let me know when works best for you. You can call me. (320)260-9096. Leave a message if you get voice mail. I am at the hospital a lot and can not use it. Cindy, you can stop by also. I am not sure how far we are. You can find out and then give me a call if it will work. And Megan, why are you at work reading the blog? You silly girl, you should be working :-) And yes if you were here we would just be crying. You are so correct.
They closed Jaden up Monday evening and Dr. Harrington came out and said he was a "Gem" and it went wonderfully. He did pretty good through the night. His blood pressure dropped a bit but this was expected.
Yesterday morning I was here for the rounds and they called him "the star of the place." It is so encouraging to hear the Dr's so proud of how he is doing. He did really good through out the day.
Now for some very sad news. (You might want to grab some Kleenex for those of you who are extra sensitive.) Sal showed up last night. Well he did not come for a happy reason. As many of you know, Amber our dog got sick right before we had to leave. Well, she passed away last night around 6pm. She had a heart attack out of all things. She was at the vet and Sal was there talking to the Dr. about the surgery that they wanted to do on her and while they were talking, it happened. They tried to revive her but it did not work. It has been so hard for me!
We will not tell the kids until Jaden and I get home. They knew she was staying at Wendy's house so we will just let them think she is staying there still. It is going to be so hard to tell them. They have been asking to see her for days. They have complained that they miss her so much. I think that Amber took the pain and problems of the heart so Jaden would not have to. I had forgotten that she had a heart murmur and with her Lyme disease and a few other things that were going on, it made her heart struggle and stop. I am truly sorry to tell you all this news. I just wanted to make sure that for those of you who knew, that you would not mention it to the kids. I want to make sure that I am there to help them through this when they find out. We will not tell them until I come home.
The Dr's. Are still talking about taking Jaden off the respirator this afternoon. They say once he is off, I will get to hold him all the time as long as his blood pressure is good.
Please pray for Jaden's strength but also all of us as we work through the loss of our dear Amber. Sal will have to avoid the kids questioning of Amber and not be able to grieve as the kids will always be around and I will have to grieve without him. I am feeling very bad as I was not there to take care of her when she was sick and before we left I was so busy getting ready, I did not tend to her like I should have. I know it is not my fault and there is not much I could have done, it is just my mother inside me needing to be the care giver.
I will know that you are all praying for us and we do not need to hear about your sympathy for Amber. That will just make it that much harder for us to cope. I am trying to stay strong when I am with Jaden so he does not feel this emotion from me.
Thank you all again for your continued support and prayers.
Love to you all, Steph
Thank you all for being so patient. I was not by the computer yesterday at all. Before the update, Sarah, let me know when works best for you. You can call me. (320)260-9096. Leave a message if you get voice mail. I am at the hospital a lot and can not use it. Cindy, you can stop by also. I am not sure how far we are. You can find out and then give me a call if it will work. And Megan, why are you at work reading the blog? You silly girl, you should be working :-) And yes if you were here we would just be crying. You are so correct.
They closed Jaden up Monday evening and Dr. Harrington came out and said he was a "Gem" and it went wonderfully. He did pretty good through the night. His blood pressure dropped a bit but this was expected.
Yesterday morning I was here for the rounds and they called him "the star of the place." It is so encouraging to hear the Dr's so proud of how he is doing. He did really good through out the day.
Now for some very sad news. (You might want to grab some Kleenex for those of you who are extra sensitive.) Sal showed up last night. Well he did not come for a happy reason. As many of you know, Amber our dog got sick right before we had to leave. Well, she passed away last night around 6pm. She had a heart attack out of all things. She was at the vet and Sal was there talking to the Dr. about the surgery that they wanted to do on her and while they were talking, it happened. They tried to revive her but it did not work. It has been so hard for me!
We will not tell the kids until Jaden and I get home. They knew she was staying at Wendy's house so we will just let them think she is staying there still. It is going to be so hard to tell them. They have been asking to see her for days. They have complained that they miss her so much. I think that Amber took the pain and problems of the heart so Jaden would not have to. I had forgotten that she had a heart murmur and with her Lyme disease and a few other things that were going on, it made her heart struggle and stop. I am truly sorry to tell you all this news. I just wanted to make sure that for those of you who knew, that you would not mention it to the kids. I want to make sure that I am there to help them through this when they find out. We will not tell them until I come home.
The Dr's. Are still talking about taking Jaden off the respirator this afternoon. They say once he is off, I will get to hold him all the time as long as his blood pressure is good.
Please pray for Jaden's strength but also all of us as we work through the loss of our dear Amber. Sal will have to avoid the kids questioning of Amber and not be able to grieve as the kids will always be around and I will have to grieve without him. I am feeling very bad as I was not there to take care of her when she was sick and before we left I was so busy getting ready, I did not tend to her like I should have. I know it is not my fault and there is not much I could have done, it is just my mother inside me needing to be the care giver.
I will know that you are all praying for us and we do not need to hear about your sympathy for Amber. That will just make it that much harder for us to cope. I am trying to stay strong when I am with Jaden so he does not feel this emotion from me.
Thank you all again for your continued support and prayers.
Love to you all, Steph
Monday, April 17, 2006
Gonzalez's Heart
Today was a very mixed day emotionally. Jaden did really good over night again and this morning he got the go ahead to be closed. They said they were going to close him this afternoon.
Our friend Steph came at lunch time. Her and I went over to see Jaden. We were there for about 2 hours and at least 45 minutes of the time we were there he had his eyes open and was moving his arms around a lot. He is pretty sedated but does have awake times and it was when we were there. That was very cool. Steve was helping with the baby next to us so I did not want to leave to make sure Jaden did not hit his open chest or anything. The baby next to us went bad. They had to bring the crash cart in and the room filled with a lot of people. We were trapped in and had to listen to this through the curtain. I told Jaden he could not hear this and turned up his music. I had a really hard time dealing with this. I was almost in a panic. It just was to close to home. This could have been and still could be Jaden. He is totally in the circumstance that it could be him. It was so hard. I almost started to feel faint. It was not a good feeling and it affected my whole day. The baby ended up being stable and we were able to leave but he is still not doing well at all.
Sal and the kids left and that was very hard for me. I walked them to the car and didn't even make it there before I was crying. It is so hard for me. I know I will see them in a few days but it is just so hard. I did not let them see me cry but I could not hold it in when I said good bye to Sal. I felt a loneliness when I got to our room. I then decided to go back and see Jaden. When I got there, the doors were closed with and "OR in Progress" sign on it. They were closing him. When they were done, the surgeon came out and said, "he was a gem. It went fabulously." I was very excited it went so well. Kelly, dad, Mattie and I went and saw him tonight and it was so nice to see him yet another step closer to recovery. However, while I was in there his blood pressure fell pretty bad and the nurse even got nervous. This was the worst I had seen anyone respond to anything for Jaden. This was not good to see. By the time we left though he was doing ok but the nurse said tonight problems would be with blood pressure if anything. They will most likely have to give him more blood. He was already on the borderline for needing it.
Anyway, sleep overs start this week. (I am glad for this.) The kids go back to school tomorrow and they are excited. We have 2 pictures that Ashley gets to take to school with her and she asked if she can take them anywhere to show everyone. She is very excited for everyone to see them.
Well, I will let you know how tonight went for our little cuttie pie. Love to you all, Steph
Today was a very mixed day emotionally. Jaden did really good over night again and this morning he got the go ahead to be closed. They said they were going to close him this afternoon.
Our friend Steph came at lunch time. Her and I went over to see Jaden. We were there for about 2 hours and at least 45 minutes of the time we were there he had his eyes open and was moving his arms around a lot. He is pretty sedated but does have awake times and it was when we were there. That was very cool. Steve was helping with the baby next to us so I did not want to leave to make sure Jaden did not hit his open chest or anything. The baby next to us went bad. They had to bring the crash cart in and the room filled with a lot of people. We were trapped in and had to listen to this through the curtain. I told Jaden he could not hear this and turned up his music. I had a really hard time dealing with this. I was almost in a panic. It just was to close to home. This could have been and still could be Jaden. He is totally in the circumstance that it could be him. It was so hard. I almost started to feel faint. It was not a good feeling and it affected my whole day. The baby ended up being stable and we were able to leave but he is still not doing well at all.
Sal and the kids left and that was very hard for me. I walked them to the car and didn't even make it there before I was crying. It is so hard for me. I know I will see them in a few days but it is just so hard. I did not let them see me cry but I could not hold it in when I said good bye to Sal. I felt a loneliness when I got to our room. I then decided to go back and see Jaden. When I got there, the doors were closed with and "OR in Progress" sign on it. They were closing him. When they were done, the surgeon came out and said, "he was a gem. It went fabulously." I was very excited it went so well. Kelly, dad, Mattie and I went and saw him tonight and it was so nice to see him yet another step closer to recovery. However, while I was in there his blood pressure fell pretty bad and the nurse even got nervous. This was the worst I had seen anyone respond to anything for Jaden. This was not good to see. By the time we left though he was doing ok but the nurse said tonight problems would be with blood pressure if anything. They will most likely have to give him more blood. He was already on the borderline for needing it.
Anyway, sleep overs start this week. (I am glad for this.) The kids go back to school tomorrow and they are excited. We have 2 pictures that Ashley gets to take to school with her and she asked if she can take them anywhere to show everyone. She is very excited for everyone to see them.
Well, I will let you know how tonight went for our little cuttie pie. Love to you all, Steph
Sunday, April 16, 2006
Gonzalez's Heart
Happy Easter to everyone!!!
I am sorry we have not updated for a few days. We have been so tired. We did not realize how much energy has been taken from us. The anticipation of everything kept us going and then once we saw that Jaden made it through surgery and was pretty stable, it hit us hard. We have been sooooo tired and so have the kids.
Friday through the night, I checked on Jaden a few times and he was doing well. He has had a few more blood transfusions. A few reasons for that is one, they take so much blood for lab and his body is so weak, he is not able to replenish it. The 2nd, is to help keep his blood pressure stable. That has been one of the hardest things to keep stable. Otherwise, he did not retain to much fluid. They say it is normal to go into surgery weighing 7lbs and coming out weighing 10 or 11lbs. I am not sure where he is at but he did not gain much. This is very good. It means he is peeing out all the fluids that are going in and his body is doing the work that needs to be done.
Saturday was another good day. He was stable all day and Steve his nurse said he was trying to think of what to write in his report because he did so good. YEAH!!! There is a group of us with babies that are having some major issues and surgeries. Probably 6 of us. We all talk with each other and listen and learn. Jaden has been doing the best and every time one of them asks or we talk about it, I get to say it is because the power of prayer. I get to tell them that we have people all over the United States praying. It is so cool. I know that is what has kept us so strong. Without it, I am not sure where we would be. It has been miraculous to see his open chest. They have a big clear yellow tape over his entire chest and then the incision which is a oval right now. Where to opening is, there is a little piece of canvas which is stitched to his skin to ensure nothing sticks to the heart. The reason they have to leave his chest open is because the heart is to swollen and inflamed and it is to big to close the chest. You can see the heart beat really strong against the canvas. The only thing between my finger and his heart is this very thin piece of canvas.. It is so unbelievable!! Only God could give someone the brain to come up with this survival technique while the heart gets to its normal size.
Today the RMH left an Easter basket at our door and then when we got to Jaden's room, he had an Easter basket as well. We did not do too much. We were so tired that we rested quite a bit and just spent time together. Ashley and I went alone once today to see Jaden and we read to him by his bed. It was really nice. I told Ashley we would read 1 story and we read 3. She told Steve that she tricked me to read 3. It was very special.
Sal and the kids will leave tomorrow night to go back to St. Cloud. This will be really hard. The kids are excited to be back but they don't want to leave me and they want to stay with their baby brother. It will be hard for us all to adjust to this next step in our journey. Those of you who wanted to help that live in the St. Cloud area, this is the time we will ask. Sal and the kids will need meals. I want to make sure they are not eating McDonald's all the time. So anything that can be frozen and easy to through in the oven would be great. Fruits and veggies would be nice as well. And a quick word of advice, don't ask Sal if he needs meals because he will say no.
that's it for now. I will let you know how tomorrow goes. The word is that they will be closing his chest tomorrow. This is a surgery that is not as intense but still is major. After they close him, a lot could happen and go wrong. So please keep those prayers coming. We are past the 1st surgery, but no where near home plate.
Love to you all on this Easter Sunday, Steph, Sal and the kids
Happy Easter to everyone!!!
I am sorry we have not updated for a few days. We have been so tired. We did not realize how much energy has been taken from us. The anticipation of everything kept us going and then once we saw that Jaden made it through surgery and was pretty stable, it hit us hard. We have been sooooo tired and so have the kids.
Friday through the night, I checked on Jaden a few times and he was doing well. He has had a few more blood transfusions. A few reasons for that is one, they take so much blood for lab and his body is so weak, he is not able to replenish it. The 2nd, is to help keep his blood pressure stable. That has been one of the hardest things to keep stable. Otherwise, he did not retain to much fluid. They say it is normal to go into surgery weighing 7lbs and coming out weighing 10 or 11lbs. I am not sure where he is at but he did not gain much. This is very good. It means he is peeing out all the fluids that are going in and his body is doing the work that needs to be done.
Saturday was another good day. He was stable all day and Steve his nurse said he was trying to think of what to write in his report because he did so good. YEAH!!! There is a group of us with babies that are having some major issues and surgeries. Probably 6 of us. We all talk with each other and listen and learn. Jaden has been doing the best and every time one of them asks or we talk about it, I get to say it is because the power of prayer. I get to tell them that we have people all over the United States praying. It is so cool. I know that is what has kept us so strong. Without it, I am not sure where we would be. It has been miraculous to see his open chest. They have a big clear yellow tape over his entire chest and then the incision which is a oval right now. Where to opening is, there is a little piece of canvas which is stitched to his skin to ensure nothing sticks to the heart. The reason they have to leave his chest open is because the heart is to swollen and inflamed and it is to big to close the chest. You can see the heart beat really strong against the canvas. The only thing between my finger and his heart is this very thin piece of canvas.. It is so unbelievable!! Only God could give someone the brain to come up with this survival technique while the heart gets to its normal size.
Today the RMH left an Easter basket at our door and then when we got to Jaden's room, he had an Easter basket as well. We did not do too much. We were so tired that we rested quite a bit and just spent time together. Ashley and I went alone once today to see Jaden and we read to him by his bed. It was really nice. I told Ashley we would read 1 story and we read 3. She told Steve that she tricked me to read 3. It was very special.
Sal and the kids will leave tomorrow night to go back to St. Cloud. This will be really hard. The kids are excited to be back but they don't want to leave me and they want to stay with their baby brother. It will be hard for us all to adjust to this next step in our journey. Those of you who wanted to help that live in the St. Cloud area, this is the time we will ask. Sal and the kids will need meals. I want to make sure they are not eating McDonald's all the time. So anything that can be frozen and easy to through in the oven would be great. Fruits and veggies would be nice as well. And a quick word of advice, don't ask Sal if he needs meals because he will say no.
that's it for now. I will let you know how tomorrow goes. The word is that they will be closing his chest tomorrow. This is a surgery that is not as intense but still is major. After they close him, a lot could happen and go wrong. So please keep those prayers coming. We are past the 1st surgery, but no where near home plate.
Love to you all on this Easter Sunday, Steph, Sal and the kids
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