Saturday, August 25, 2012
10 days old :)
Today has been a hard day for me. I know how sick Noah is and I have known that there was the possibility that he would be this sick for the last 19 weeks and 4 days but I guess I held on to the fact that maybe he wouldn't be. I have read every single article every single website that I can possibly find on ebstein's anomaly. There is not much out there. In fact there is nothing out there on the combination of Ebstein's and pulmonary atresia. I think I have found research on 2 or 3 cases other then Noah's. His combination makes up for less then 0.25% of all congenital heart disease. Which makes it even that more difficult to understand. Most of the nurses have never taken care of a patient with it and neither have the fellows. The cardiologist that had been on call this week at least understands it and why noah's body does the things it does. I don't know how many other ebsteins patients he has seen though. That's what makes this so difficult is no one knows. Noah was not expected to survive till birth and then he proved everyone wrong at 36 hours old by surviving open heart surgery. Only God and Nosh know the plan they have for his life. Only they know how long it will take him to come off the meds and the ventilator. The doctors may try to figure it out but Noah is in control. God has an amazing plan for this little guy and I can't wait to see what it is.
I got to hold him today for about 60 seconds while the nurses changed his bed which made my day. I have waited 9 days to hold more then his head and hand. I can't wait till I can keep him in my arms for hours :) no matter what his daddy says I don't think he will ever get put down ;)
I realized today actually how sick he is. I have said since day one I will do what ever I have to to get him home. If that means a baby with a feeding tube or a vent or oxygen. Then that's what we will do. What ever Noah needs we will do. It might not be exactly what we had planned but it is out of our control. But to hear someone say out loud to me that all if these may be a possibility makes them all too real. No one is saying any of these are a possibility until weeks down the road but still to hear someone else tell me yes this might have to happen scares the fuck out of me. I still will do whatever I have to to get him home.
I know we will have bad days and good days but up to this point we have had so many good days it's hard to except the fact that he WILL have bad days.
Noah is on the vent still and we are slowly weaning his settings. He will tell us when he is ready to come off. Our biggest concern currently is his heart and the complete heart block that he is in. We are running out of days for it to fix itself. I know in the big scheme of things a pacemaker is not that big of a deal but my sweet little boy does not need another surgery. We are still on a calcium chloride drip to help his heart contract and fentanyl to help keep him sedated. He has started feeds of breast milk through a nasal tube. He is tolerating them well and as we increase those we are decreasing his TPN and lipids.
I just can't wait until we are all home and under one roof. I need all my babies and my husband home :)
Please continue praying that we can find noah's happy balance of meds so we can get him off the vent and home. We still have a mountain to finish climbing but I know when we get to the top the view will be beyond amazing :)
Oh I forgot to write that Makayla and Colton got to meet Noah on Thursday for the first time :) they ofcourse were in love with their new little brother and can't wait to bring him home and spoil him rotten too :)
I got to hold him today for about 60 seconds while the nurses changed his bed which made my day. I have waited 9 days to hold more then his head and hand. I can't wait till I can keep him in my arms for hours :) no matter what his daddy says I don't think he will ever get put down ;)
I realized today actually how sick he is. I have said since day one I will do what ever I have to to get him home. If that means a baby with a feeding tube or a vent or oxygen. Then that's what we will do. What ever Noah needs we will do. It might not be exactly what we had planned but it is out of our control. But to hear someone say out loud to me that all if these may be a possibility makes them all too real. No one is saying any of these are a possibility until weeks down the road but still to hear someone else tell me yes this might have to happen scares the fuck out of me. I still will do whatever I have to to get him home.
I know we will have bad days and good days but up to this point we have had so many good days it's hard to except the fact that he WILL have bad days.
Noah is on the vent still and we are slowly weaning his settings. He will tell us when he is ready to come off. Our biggest concern currently is his heart and the complete heart block that he is in. We are running out of days for it to fix itself. I know in the big scheme of things a pacemaker is not that big of a deal but my sweet little boy does not need another surgery. We are still on a calcium chloride drip to help his heart contract and fentanyl to help keep him sedated. He has started feeds of breast milk through a nasal tube. He is tolerating them well and as we increase those we are decreasing his TPN and lipids.
I just can't wait until we are all home and under one roof. I need all my babies and my husband home :)
Please continue praying that we can find noah's happy balance of meds so we can get him off the vent and home. We still have a mountain to finish climbing but I know when we get to the top the view will be beyond amazing :)
Oh I forgot to write that Makayla and Colton got to meet Noah on Thursday for the first time :) they ofcourse were in love with their new little brother and can't wait to bring him home and spoil him rotten too :)
Friday, August 24, 2012
Happy week :)
I can't believe it has been a week since my sweet little boy has had open heart surgery. His little body has endured so much and he has done exceptionally well with everything. I hope to have half the strength and fight that he has. He really is my hero. I know God has amazing plans for his future.
I am even more in love with my husband then the day I met him. He has not left Noah's side so I have Had the chance to try to take care of myself The strength he has amazes me.
Noah still has a long road ahead of him but he is making great progress. The doctors are even amazed about how far he has come this last week. Our biggest challenge facing us is that Noah is in complete heart block. If this does not resolve itself over the next week Noah will need a pacemaker. Which in the big scheme of things it's not that big of a deal but I just ask for prayers that it is able to fix itself. One more surgery and bout of anesthesia is not what we need.
We are hoping to get Noah off the vent by Sunday and hopefully most of the meds will be gone by then too. I consider every med and tube a goal and by my count we have about 30 to go. Which is better then the 50 some we started with.
Please keep the prayers coming and now that I am starting to feel better I will try and update more then weekly
I am even more in love with my husband then the day I met him. He has not left Noah's side so I have Had the chance to try to take care of myself The strength he has amazes me.
Noah still has a long road ahead of him but he is making great progress. The doctors are even amazed about how far he has come this last week. Our biggest challenge facing us is that Noah is in complete heart block. If this does not resolve itself over the next week Noah will need a pacemaker. Which in the big scheme of things it's not that big of a deal but I just ask for prayers that it is able to fix itself. One more surgery and bout of anesthesia is not what we need.
We are hoping to get Noah off the vent by Sunday and hopefully most of the meds will be gone by then too. I consider every med and tube a goal and by my count we have about 30 to go. Which is better then the 50 some we started with.
Please keep the prayers coming and now that I am starting to feel better I will try and update more then weekly
Saturday, August 18, 2012
August 17,2012
I am first going to paste what Gary wrote on our facebook page in case I forget to post anything. Also if anyone wants to look it up it is Our Journey With Noah Alexander
The last 24 hours have been the longest, and most difficult 24 hours of my life. I have been at Cincinnati Children’s Hospital since Wednesday afternoon only walking outside for a half hour to walk with my mom. I have been watching my son fight though so much in less than two days of life, it is amazing how strong he is. The last 24 hour I broke, watching Noah and seeing what he is going through is something I would not wish on my worst enemy. Seeing everything first hand I just kept asking God why can Noah not just catch a break…why does Noah have to have so much going wrong with him??? As the surgery team wheeled Noah into the operating room this morning I found myself questioning is there a God and if so why is he such an ass hole. After 7 ½ hours a surgery I found that there is a God and we work on his time table not ours. I found that things that are horrible are not horrible and are just blessing in disguise…finding out after surgery that a successful cath procedure would have killed Noah and surgery was the best option put everything in prospective…. I remember now that God does test us every day and God does things in the way he wants them done…and I know understand the statement from Angles and Demons “God answers all prayers…sometime the answer is no”. I have also seen the amazing power of prayer and how amazing human beings can be…People I never met or talked to are following our story sending us prays…People have started prayer chains and have had their churches add us to their prayer list. I can say first hand prayer works and I am thankful for each and every one of you all who have said prayers over the last two days….I beg everyone to keep them coming Noah can use all of the prayers he can get…One of the hardest things for a parent in my position to do is letting go understanding that there is nothing I can do…and putting everything in God’s Hands. There is no worst feeling in the world than handing your child over to a group of people who you met for less than ten minutes while they had you sign a consent form…Several times a year we in the Cincinnati area hear how Cincinnati Children’s Medical Center is one of the best hospitals in the world…well that is the biggest understatement in the world…the team of people here at CCMC are the most loving, caring, understanding, and helpful group in the world…from the doctors to the nurses to the housekeepers who know my name and Noah’s name and check in on us every day…they are all amazing and would not ask for another group of people to take care of Noah they truly treat him as their own… Noah is still very critical and has a long road ahead of him…he will have ups and downs but I know he is in the best hands in the world and I literally trust these angles with my sons life…I have been told over the last two days that Noah is strong like his dad…I could only wish I was just a fraction as strong as Noah…last night and this morning I broke…I was ready to give up and at 36 hours old Noah fought and continues to fight…Noah has taught me what it means to fight for something you truly want….He has taught me what strong really is…at two days old my son is my hero…and I know I will never give up on him…I will fight for him until my last breath.
I agree with him that the last 24 hours have been the hardest of my life truly to me the last 60 hours have been the hardest but the past 18 hours have been the most difficult of that. To be away from your baby is hard but to be separated from your sick baby is so hard. I felt bad because I couldn't be here I feel bad because Gary had to be here alone. There is nothing like feeling helpless 5 minuets away from 2 of the people you love most in this world. I never realized that I could miss my husband in a way that I do and did. I miss my other babies and need them as well.....First I want to say that I never realized how for granted I have taken our three healthy children. I realize how truly blessed I am that they are never sick and have no medical problems. Sitting here watching the most adorable 60 hour old boy in the world sleeping fighting for his life is the hardest. I have spent the last 18 weeks praying that we would not be here but we are and I have to look at that God chose us to be his parents for a reason. I do not know that reason and never will until I meet God and can ask him but we are facing the challenge head on and will give Noah every fighting chance period end of story. I will go to the end of the world for him and fight anyone who tries to get in my way. He is the strongest person I have ever met. He is fighting this with more power and strength then I ever knew someone who is 60 hours could. He has already endured more then most adults even begin to think about. He is a survivor. That is why we named him Noah :)
When Gary called me this morning we had to make the decision to go to surgery at that moment or let God have Noah at that moment. I had no thought but we had to do surgery but there is always that thought in the back of your head that says are you sure you are making the right decision. I have told myself that I will not ask what if if things don't go our way or a procedure doesn't go the way we want it to or thought it should. We are making the best decisions in the world that we can and we don't care if everyone agrees with it or not. We will choose what we feel as his parents is the best course for Noah. I knew from the beginning of this 18 weeks ago that I would fight for my son no matter what. I would have picked up and moved everyone to where ever in this country he can receive the best treatment and care. Thankfully we live less then 15 miles from one of the best Children's hospitals in the world :) and even more thankfully we have one of the worlds top 5 cardiac programs here. We truly are blessed with not only this hospital but with the other ones around it.
To sum up today Noah had open heart surgery to open what we thought was a pulmonary valve but ended up being an entire pulmonary valve construction, so we are very blessed that the cardiac cath did not work because it would have caused serious injury to him had it. Open heart was a very long 7 hour procedure that went better then expected. They had to start emergently as the were doing CPR with out chest compressions to keep him alive. Once they had is chest open and he was on bypass things went smoothly after that. Very slow but better then expected. He is stable and absolutely adorable :) He is in very critical condition and the next 72 hours will tell us a lot.
We are climbing a mountain and we have to take this journey one step at a time. I know that there will be set backs along the way but I know that he will fight through it and we will be by his side fighting just as hard. Prayers go a long way. God listens and he answers them. God has awesome plans for this little boy and we have a world to show him. And he has 2 big sisters and a big brother who are ready to spoil him rotten and mommy and daddy of course.
I am going to do my best to write everyday and I know Gary is updating our facebook page daily.
As of this moment life is okay and we are cautiously optimistic about the way things are looking currently. Please continue to pray for him add him to church prayer list tell every stranger you meet that this little boy needs their prayers lol. He is so strong and a fighter. I know he will make it through this it is going to be just one step at a time.
The last 24 hours have been the longest, and most difficult 24 hours of my life. I have been at Cincinnati Children’s Hospital since Wednesday afternoon only walking outside for a half hour to walk with my mom. I have been watching my son fight though so much in less than two days of life, it is amazing how strong he is. The last 24 hour I broke, watching Noah and seeing what he is going through is something I would not wish on my worst enemy. Seeing everything first hand I just kept asking God why can Noah not just catch a break…why does Noah have to have so much going wrong with him??? As the surgery team wheeled Noah into the operating room this morning I found myself questioning is there a God and if so why is he such an ass hole. After 7 ½ hours a surgery I found that there is a God and we work on his time table not ours. I found that things that are horrible are not horrible and are just blessing in disguise…finding out after surgery that a successful cath procedure would have killed Noah and surgery was the best option put everything in prospective…. I remember now that God does test us every day and God does things in the way he wants them done…and I know understand the statement from Angles and Demons “God answers all prayers…sometime the answer is no”. I have also seen the amazing power of prayer and how amazing human beings can be…People I never met or talked to are following our story sending us prays…People have started prayer chains and have had their churches add us to their prayer list. I can say first hand prayer works and I am thankful for each and every one of you all who have said prayers over the last two days….I beg everyone to keep them coming Noah can use all of the prayers he can get…One of the hardest things for a parent in my position to do is letting go understanding that there is nothing I can do…and putting everything in God’s Hands. There is no worst feeling in the world than handing your child over to a group of people who you met for less than ten minutes while they had you sign a consent form…Several times a year we in the Cincinnati area hear how Cincinnati Children’s Medical Center is one of the best hospitals in the world…well that is the biggest understatement in the world…the team of people here at CCMC are the most loving, caring, understanding, and helpful group in the world…from the doctors to the nurses to the housekeepers who know my name and Noah’s name and check in on us every day…they are all amazing and would not ask for another group of people to take care of Noah they truly treat him as their own… Noah is still very critical and has a long road ahead of him…he will have ups and downs but I know he is in the best hands in the world and I literally trust these angles with my sons life…I have been told over the last two days that Noah is strong like his dad…I could only wish I was just a fraction as strong as Noah…last night and this morning I broke…I was ready to give up and at 36 hours old Noah fought and continues to fight…Noah has taught me what it means to fight for something you truly want….He has taught me what strong really is…at two days old my son is my hero…and I know I will never give up on him…I will fight for him until my last breath.
I agree with him that the last 24 hours have been the hardest of my life truly to me the last 60 hours have been the hardest but the past 18 hours have been the most difficult of that. To be away from your baby is hard but to be separated from your sick baby is so hard. I felt bad because I couldn't be here I feel bad because Gary had to be here alone. There is nothing like feeling helpless 5 minuets away from 2 of the people you love most in this world. I never realized that I could miss my husband in a way that I do and did. I miss my other babies and need them as well.....First I want to say that I never realized how for granted I have taken our three healthy children. I realize how truly blessed I am that they are never sick and have no medical problems. Sitting here watching the most adorable 60 hour old boy in the world sleeping fighting for his life is the hardest. I have spent the last 18 weeks praying that we would not be here but we are and I have to look at that God chose us to be his parents for a reason. I do not know that reason and never will until I meet God and can ask him but we are facing the challenge head on and will give Noah every fighting chance period end of story. I will go to the end of the world for him and fight anyone who tries to get in my way. He is the strongest person I have ever met. He is fighting this with more power and strength then I ever knew someone who is 60 hours could. He has already endured more then most adults even begin to think about. He is a survivor. That is why we named him Noah :)
When Gary called me this morning we had to make the decision to go to surgery at that moment or let God have Noah at that moment. I had no thought but we had to do surgery but there is always that thought in the back of your head that says are you sure you are making the right decision. I have told myself that I will not ask what if if things don't go our way or a procedure doesn't go the way we want it to or thought it should. We are making the best decisions in the world that we can and we don't care if everyone agrees with it or not. We will choose what we feel as his parents is the best course for Noah. I knew from the beginning of this 18 weeks ago that I would fight for my son no matter what. I would have picked up and moved everyone to where ever in this country he can receive the best treatment and care. Thankfully we live less then 15 miles from one of the best Children's hospitals in the world :) and even more thankfully we have one of the worlds top 5 cardiac programs here. We truly are blessed with not only this hospital but with the other ones around it.
To sum up today Noah had open heart surgery to open what we thought was a pulmonary valve but ended up being an entire pulmonary valve construction, so we are very blessed that the cardiac cath did not work because it would have caused serious injury to him had it. Open heart was a very long 7 hour procedure that went better then expected. They had to start emergently as the were doing CPR with out chest compressions to keep him alive. Once they had is chest open and he was on bypass things went smoothly after that. Very slow but better then expected. He is stable and absolutely adorable :) He is in very critical condition and the next 72 hours will tell us a lot.
We are climbing a mountain and we have to take this journey one step at a time. I know that there will be set backs along the way but I know that he will fight through it and we will be by his side fighting just as hard. Prayers go a long way. God listens and he answers them. God has awesome plans for this little boy and we have a world to show him. And he has 2 big sisters and a big brother who are ready to spoil him rotten and mommy and daddy of course.
I am going to do my best to write everyday and I know Gary is updating our facebook page daily.
As of this moment life is okay and we are cautiously optimistic about the way things are looking currently. Please continue to pray for him add him to church prayer list tell every stranger you meet that this little boy needs their prayers lol. He is so strong and a fighter. I know he will make it through this it is going to be just one step at a time.
Thursday, August 16, 2012
Day 2
This is not going to be a long post but I need to write. Today has been the most emotional day I think I have ever experienced in my life. I want to say thank you to my mom and Gary's mom for all of your support the last 2 days and thank you to our sisters for taking care of the kids. I know it has been crazy being the first 2 days of school. I can't say thank you to Gary enough he is more them amazing and I could want anyone else by my side. I am truly blessed to have an amazing husband. Pat you did a great job :)
Noah went to the cath lab today and unfortunately they were not able to fix the number one issue effecting his heart. So ien the morning he will be having open heart surgery. The cath was able to provide a better look at the actual anatomy of his heart which has made the planning for the open heart go better.
please say a prayer that it goes quickly and uncomplicated. That the surgeon And his team are able to fix all the issues that need fixing today.
I was able to spend a few hours with Noah & Gary this afternoon and evening. I got to meet the cardiothorasic surgeon who is great. I even mentioned going to Huston to see him right after we were diagnosed. And then he moved here :) that is all I can write tonight. I will do a better update today as we go through surgery. It should take them 4-6 hours or a little quicker or longer.
We love you all & thank you for the prayers CBC support.
Noah went to the cath lab today and unfortunately they were not able to fix the number one issue effecting his heart. So ien the morning he will be having open heart surgery. The cath was able to provide a better look at the actual anatomy of his heart which has made the planning for the open heart go better.
please say a prayer that it goes quickly and uncomplicated. That the surgeon And his team are able to fix all the issues that need fixing today.
I was able to spend a few hours with Noah & Gary this afternoon and evening. I got to meet the cardiothorasic surgeon who is great. I even mentioned going to Huston to see him right after we were diagnosed. And then he moved here :) that is all I can write tonight. I will do a better update today as we go through surgery. It should take them 4-6 hours or a little quicker or longer.
We love you all & thank you for the prayers CBC support.
Wednesday, August 15, 2012
Happy Birthday Noah!!!!
Today at 2:16pm we welcomed Noah Alexander into the world. He came into this world screaming and pissed off which makes me a happy momma :)
He weighed 6lbs 11.8ounces and is 17.5 inches long. He is in the CICU at Childrens and they are in the progress of doing an echo as I type this.
The hardest thing I have ever done is being separated from my baby my husband and my big kids. At least I got to take them on their first day of school. Both makayla and Colton said they had boring days. Hopefully they get better the next 2 :)
I will update more later :)
He weighed 6lbs 11.8ounces and is 17.5 inches long. He is in the CICU at Childrens and they are in the progress of doing an echo as I type this.
The hardest thing I have ever done is being separated from my baby my husband and my big kids. At least I got to take them on their first day of school. Both makayla and Colton said they had boring days. Hopefully they get better the next 2 :)
I will update more later :)
38 weeks 1 day :)
Happy birthday Noah!!! He will be here sometime this afternoon :) will update as soon as we can. Please everyone say a prayer that all is well and this time next week we have a baby home.
Friday, August 10, 2012
Wednesday, August 8, 2012
37 weeks
Well here we are patiently awaiting Noah's arrival. As much as I am over being pregnant I just want to stay this way because I feel like I have a little control over the situation. I feel as if as I am keeping him safe. As long as he is warm inside me I know what is normal and what is not. I know if he has moved or is acting normal for him. Once he is born it is all in Gods hands and the doctors and nurses. I know in my heart that everything will be okay and I am putting my trust completely in God to not give me more then I can handle but as I have said a million times before it is SO much easier said then done.
Subscribe to:
Comments (Atom)