Tuesday, October 9, 2012
55 days :)
After spending his entire life in the CICU we will be going to the step down unit today :) I am one excite momma because that is one step closer to home!!!!
Sunday, October 7, 2012
Day 53
I got 8+ hours of sleep last night thanks to a wonderful nurse named April :) like I have said before some nurses are gifts from God and some left so much to be desired. Noah and I have been hanging out since daddy had to work all weekend. He gets to hang out with grandma today while Gary & I go to the bengals game. Whodey!!!! The talk is we should be home by the end of the week as long as Noah continues to behave himself. I am so excited about this but I am so scared to get my hopes up. This is the biggest wildest roller coaster tide I have ever been on. But I has been so worth the ride and while I never want to go on it again I would do anything in the world for my sweet precious boy.
Thursday, October 4, 2012
50 days
As I was driving to the hospital this morning I was listening to the radio and praying. I was asking God to show me that there truly was an end in sight that this rough rocky road that we've been traveling for the last 50 days with a sign that it will come to an end. As i turned the corner I looked up and saw a rainbow. Along this entire journey I have asked God to keep my noah as he kept his Noah Safe from the storm. As Noah saw a rainbow at the end of his storm I am hoping that the rainbow I saw was a sign that our storm too has ended and brighter days are ahead of us :)
Wednesday, October 3, 2012
7 weeks old :)
Noah has been extubated for 1 week now!!!! I am having a hard time being excited though because I am so scared something bad will happen. Noah is growing longer but has not gained any weight so we are increasing feeds and calories. He now weighs 3.3 kilos he was 3.2 kilos when he was born. He continues to amaze me with his ability to fight everyday. He has more fight in him then most adults I know :) I am so proud of him and I am completely in love with him. I can't wait till we are home and I can spoil him to no end!!!! He is never going to get put down. No matter what his daddy may have said :) cause he will never put him down either.
I wish someone would have told me how big of a roller coaster this journey would be. I know there is no way to ever prepare someone for this journey but a heads up would be nice. As many highs you experience there are as many lows and some of those lows feel like hell but the highs are heavenly. I am trying to remember I need to rejoice and be excited but it is so hard.
I have to thank my husband for being my rock. For listening to me yell and say mean things to him and about other people. For encouraging me to speak my mind and question the doctors and nurses. I am so proud of him for staying at the hospital and going back to work. I just love him to a million pieces. I don't know what I would do without him :)
I wish someone would have told me how big of a roller coaster this journey would be. I know there is no way to ever prepare someone for this journey but a heads up would be nice. As many highs you experience there are as many lows and some of those lows feel like hell but the highs are heavenly. I am trying to remember I need to rejoice and be excited but it is so hard.
I have to thank my husband for being my rock. For listening to me yell and say mean things to him and about other people. For encouraging me to speak my mind and question the doctors and nurses. I am so proud of him for staying at the hospital and going back to work. I just love him to a million pieces. I don't know what I would do without him :)
Wednesday, September 5, 2012
9/5/12
So I start all these post and never finish them so I never publish them but that's not why I started this. I started this to tell a mothers experience something I couldn't find when we started this journey 21 weeks ago. So from now on finished or not I am going to post what I write :)
Today gas had it's highs and lows. Noah looked great when I got to the hospital this morning. We decided that today was the day that he would come off the vent again. He was extubated last Thursday for the first time and reintubated on Sunday evening because of an infection. He did well the first few hours today but as today progressed he spiked a fever again his heart rate went up and his breathing worsened therefore they are in the process of reintubating him a I type this. This just fucking sucks!!!! He is to little to have to go through all of this. He hasn't done anything to deserve all of this. I have done so well not asking why or what if but right now all I wan us for God to tell me why this sweet little boy of mine must endure all of this. He has been through more in the past 3 weeks then most people have to go through in a life time. It's not fair!!!! It fucking sucks!!!! All I want to do as his momma is hold him and cuddle him and make all of this pain go away but I can't. Its like no one cares what he needs what his momma needs. He is three weeks old today and I have never really held him in my arms. I got to lift him up one time for 30 seconds while they changed his bed but never have felt him in my arms.
My heart breaks for Gary there is no reason any parent should endure any if this but let alone someone with their first child. It's not fair to him at all. I want him to hold him and cuddle him in his arms too. I just want us all to be home under one roof. I want life to go back to some balance of normal I want to pick makayla up from school and get Colton off the bus. I want to spend the day with my 2 babies doing nothing but loving on them. I feel like I am missing so much of their lives. I feel like an awful mother for leaving them at home and an awful mother for leaving my sweet little boy here at the hospital.
Today gas had it's highs and lows. Noah looked great when I got to the hospital this morning. We decided that today was the day that he would come off the vent again. He was extubated last Thursday for the first time and reintubated on Sunday evening because of an infection. He did well the first few hours today but as today progressed he spiked a fever again his heart rate went up and his breathing worsened therefore they are in the process of reintubating him a I type this. This just fucking sucks!!!! He is to little to have to go through all of this. He hasn't done anything to deserve all of this. I have done so well not asking why or what if but right now all I wan us for God to tell me why this sweet little boy of mine must endure all of this. He has been through more in the past 3 weeks then most people have to go through in a life time. It's not fair!!!! It fucking sucks!!!! All I want to do as his momma is hold him and cuddle him and make all of this pain go away but I can't. Its like no one cares what he needs what his momma needs. He is three weeks old today and I have never really held him in my arms. I got to lift him up one time for 30 seconds while they changed his bed but never have felt him in my arms.
My heart breaks for Gary there is no reason any parent should endure any if this but let alone someone with their first child. It's not fair to him at all. I want him to hold him and cuddle him in his arms too. I just want us all to be home under one roof. I want life to go back to some balance of normal I want to pick makayla up from school and get Colton off the bus. I want to spend the day with my 2 babies doing nothing but loving on them. I feel like I am missing so much of their lives. I feel like an awful mother for leaving them at home and an awful mother for leaving my sweet little boy here at the hospital.
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.
Tuesday, July 31, 2012
36 weeks
We have made it to out ultimate goal!!! No one including me thought we would be here with him still safe on the inside. Now for selfish reasons I need him to wait to make his appearance until Saturday lol
Our stress test on Tuesday was uneventful except for me getting snippy with the lady. I told her I didn't get a nap and she is one of the only people i don't like so... I know that's not an excuse but ;)
Today we saw the ob which was uneventful as well. We now have to see them weekly until he gets here. But that means we are close to the end :)
We also had our last echo at Childrens today :) nothing has changed since 2 1/2 weeks ago. Stable is great :)
We discussed the plan for the few days following his birth.
So now it is just wait for him to make his grand appearance or 21 days and get Makayla and Colton ready for school. And enjoy our last 2 weeks of summer :)
Our stress test on Tuesday was uneventful except for me getting snippy with the lady. I told her I didn't get a nap and she is one of the only people i don't like so... I know that's not an excuse but ;)
Today we saw the ob which was uneventful as well. We now have to see them weekly until he gets here. But that means we are close to the end :)
We also had our last echo at Childrens today :) nothing has changed since 2 1/2 weeks ago. Stable is great :)
We discussed the plan for the few days following his birth.
So now it is just wait for him to make his grand appearance or 21 days and get Makayla and Colton ready for school. And enjoy our last 2 weeks of summer :)
Thursday, July 26, 2012
35 weeks
I am posting this from my phone for the first time so we shall see how this goes. I am just over everything at this point and this week. I am ready to say fuck it at this point and be done with all of it and live the next 4 weeks living our lives as normal as possible. But I know I can't do that I would not be okay doing that but this being somewhere 3 times a week is for the birds. I am so sick of doctors appointments and testing. I miss my kids so much I feel like they have sacrificed so much this summer. I feel like we have too. That we could gave done this or gone there if it wasn't for all these places that I have to be. Life is not fair I know this but..... Why does it have to be us? Why are we the ones that have been chosen to endure this challenge. I have faith that everything is going to be okay but... I am trying hard to let go and let God be in complete control but that is so much easier said then done. I want to bring my baby home when i come home. I want to nurse him when he's born I don't want to miss a thing but....
I know that we have been blessed to live where we live. To have awesome doctors and hospitals so close but I never thought I would have to be the to use them. We have been so lucky to watch Noah grow and develop via ultra sound at least weekly if not twice a week. I have seen him sucking his hand and his cheeks get fat :) I get to watch him push the ultrasound probe away when someone scanning has worn out their welcome. The girls at the maternal fetal center at St E have been amazing I thank them for everything the last 4 months and I can't wait to take Noah to meet them. They have become friends :)
This next week is crazy for us. Colton goes to church camp Makayla has her intro to middle school :( I have an on appointment and we see the cardiologist at Children's for the last time. I also am going to a doctors appointment with my mom. On top of all of that my grandma Wayman passed away last evening so we will have the services this week. We have almost made it if we can just hang on for at least 1 more week I will be one excited momma
I know that we have been blessed to live where we live. To have awesome doctors and hospitals so close but I never thought I would have to be the to use them. We have been so lucky to watch Noah grow and develop via ultra sound at least weekly if not twice a week. I have seen him sucking his hand and his cheeks get fat :) I get to watch him push the ultrasound probe away when someone scanning has worn out their welcome. The girls at the maternal fetal center at St E have been amazing I thank them for everything the last 4 months and I can't wait to take Noah to meet them. They have become friends :)
This next week is crazy for us. Colton goes to church camp Makayla has her intro to middle school :( I have an on appointment and we see the cardiologist at Children's for the last time. I also am going to a doctors appointment with my mom. On top of all of that my grandma Wayman passed away last evening so we will have the services this week. We have almost made it if we can just hang on for at least 1 more week I will be one excited momma
Tuesday, July 24, 2012
34 weeks
It has been 14 very long weeks since our original diagnosis of Ebsteins Anomaly at our 20 week ultrasound. We had our 5th echo at Cincinnati Children's on Tuesday & our diagnosis is now severe pulmonary valve stenosis with an ebstnoid like tricuspid valve. We will not have a definite diagnosis until he is born and we can have an echo done directly on him. The plan is to continue with twice weekly non stress test and a weekly ultra sounds to measure heart to chest circumference and check to check for extra fluid. We are still failing more NST then we are passing but he is moving & doing everything he should be doing at this stage in the game. There is no reason why we will not go full term at this point.
We also had an fetal MRI to evaluate lung structure and lung volume. I have been waiting to write an update until we got the results of that. It showed that lung volumes are in the mid range (87 mL) for our gestational range which is great news. The OB was very excited about this number. I don't really know what it means except that is the total amount of volume his lungs can currently hold. I would have been happier with a higher number but I will settle for average. Noah is all about average. He has been in the average range for everything but is heart :) Which has remained stable!!!!
I have had a bad last week. I am completely overwhelmed by everything that is going on. From the older kids getting ready to go back to school in a month. The thought of having a baby in intensive care & trying to balance everything. I know that God is not going to give me more then I can handle but..... I also know that life is not fair but..... When I see all of these people out there who don't want their kids or cry because they don't want to be pregnant anymore it makes me sick. I will do anything in the world to keep this sweet little boy inside of me for at least another 2 weeks. The bigger he is the better Noah will do. I just wish the we had a plan. That I would know what to expect not that I am going to give birth and I wont be able to see my baby for 24 hours. I am his momma and he needs me. I need him I need to keep him safe & protect him. Not that I don't trust my amazing husband but..... I am his momma. If it wasn't for Gary I don't know how I would have every made it through the last 14 weeks. He is the most supportive caring loving man in the entire world. He is my rock.
I want step 1,2,3,4 and so on and I don't have this. It is very hard to accept that but I know that it is in God's plans to work out that way. Maybe it is his way of telling me I need to let go and let him have control of the situation. I am trying very hard....very very hard. It is easier said then done most days though.
We follow up with both my OB and the Cardiologist on 8/2 :) We will have made it to 37 weeks then!!!!
We also had an fetal MRI to evaluate lung structure and lung volume. I have been waiting to write an update until we got the results of that. It showed that lung volumes are in the mid range (87 mL) for our gestational range which is great news. The OB was very excited about this number. I don't really know what it means except that is the total amount of volume his lungs can currently hold. I would have been happier with a higher number but I will settle for average. Noah is all about average. He has been in the average range for everything but is heart :) Which has remained stable!!!!
I have had a bad last week. I am completely overwhelmed by everything that is going on. From the older kids getting ready to go back to school in a month. The thought of having a baby in intensive care & trying to balance everything. I know that God is not going to give me more then I can handle but..... I also know that life is not fair but..... When I see all of these people out there who don't want their kids or cry because they don't want to be pregnant anymore it makes me sick. I will do anything in the world to keep this sweet little boy inside of me for at least another 2 weeks. The bigger he is the better Noah will do. I just wish the we had a plan. That I would know what to expect not that I am going to give birth and I wont be able to see my baby for 24 hours. I am his momma and he needs me. I need him I need to keep him safe & protect him. Not that I don't trust my amazing husband but..... I am his momma. If it wasn't for Gary I don't know how I would have every made it through the last 14 weeks. He is the most supportive caring loving man in the entire world. He is my rock.
I want step 1,2,3,4 and so on and I don't have this. It is very hard to accept that but I know that it is in God's plans to work out that way. Maybe it is his way of telling me I need to let go and let him have control of the situation. I am trying very hard....very very hard. It is easier said then done most days though.
We follow up with both my OB and the Cardiologist on 8/2 :) We will have made it to 37 weeks then!!!!
33 weeks
Here we are 33 weeks :) Who knew we would have made it this far looking back 13 weeks ago. It feels like an eternity since that Friday the 13th in April. Now here we are looking another one in the face this week. No bad news this Friday the 13th though at least I am keeping my fingers crossed. We do have an ultrasound scheduled for the morning but nothing other then that. I need to start getting things ready as I am running out of days to prepare. We are down to 44 days!!! That seems like such a short time to do as much as I need to do.
As for Noah he is growing just like he is supposed to :) Last week during our 32 week growth scan he was 4 pounds 3 ounces and once again very proud of his boy parts. His heart is still taking up about 60% of his chest cavity. Which has remained stable for the last 10 weeks. There have been no signs of hydrops (extra fluid) or anything else that could be signs of heart failure. We have gotten to see him practice breathing multiple times and we have at least one round of hiccups everyday :) All these things are awesome knowing 10 weeks ago we were told that his lungs might not even have room to grow or develop. I am still thankful for every day I can stay pregnant, I never thought I would be saying this when it has been 105 degrees out for the past week.
Our plan for the next week is having our next and probably final echo at Cincinnati Children's. Having a fetal MRI to evaluate lung development and volumes. We have an appointment with my OB and then we are meeting with the research people regarding a study being done by the pediatric cardiologist at Cincinnati Children's. This on top of the 2 weekly ultrasounds that we are doing to evaluate his well being.
I will post another update after all of our appointments next Tuesday :)
As for Noah he is growing just like he is supposed to :) Last week during our 32 week growth scan he was 4 pounds 3 ounces and once again very proud of his boy parts. His heart is still taking up about 60% of his chest cavity. Which has remained stable for the last 10 weeks. There have been no signs of hydrops (extra fluid) or anything else that could be signs of heart failure. We have gotten to see him practice breathing multiple times and we have at least one round of hiccups everyday :) All these things are awesome knowing 10 weeks ago we were told that his lungs might not even have room to grow or develop. I am still thankful for every day I can stay pregnant, I never thought I would be saying this when it has been 105 degrees out for the past week.
Our plan for the next week is having our next and probably final echo at Cincinnati Children's. Having a fetal MRI to evaluate lung development and volumes. We have an appointment with my OB and then we are meeting with the research people regarding a study being done by the pediatric cardiologist at Cincinnati Children's. This on top of the 2 weekly ultrasounds that we are doing to evaluate his well being.
I will post another update after all of our appointments next Tuesday :)
:)
I found this on a blog that I follow and it touched my heart :)
MANY PEOPLE SAY THAT SPECIAL FAMILIES ARE GIVEN SPECIAL CHILDREN. OTHERS, THAT SPECIAL BABIES CHOOSE THEIR PARENTS CAREFULLY. SADLY I HAVE SEEN ENOUGH CHILDREN WITH DISABILITIES IN MY TIME WHO ARE UNLOVED, UNWANTED OR MALTREATED TO BE RATHER SUSPICIOUS OF EITHER OF THESE SENTIMENTS.
PERHAPS, RATHER, SOME OF US ARE LUCKY ENOUGH TO HAVE LEARNT SUCH A LOT FROM OUR CHILDREN, SAT BACK AND ALLOWED THEM TO TEACH US, THAT THEY HAVE MADE US JUST A TINY BIT WISER, WITH A LITTLE SPRINKLING OF 'SPECIAL', THAN WE WERE BEFORE THEY WERE BORN...
Last week, after my reading of What to Say When a Baby is Born with Down's Syndrome at BritMums Live in London, this comment was left on my blog by another inspirational blogger @northernmum.
I was reduced to a sobbing wreck when reading it. Spiritual, but not formally religious, and somehow driven by an inexplicable inner hunger to change things for all our children, in my own way and in my own time. I've often said how it feels that this all found me and I now cannot stop.
Thank you Erma Bombeck for paying we special needs Mums, who do our very best and still feel guilty that it might not be right, the ultimate compliment.
Please sit down with a cuppa to read this one. You need to give it your full attention, and you may well cry again x
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will never consider a "step" ordinary. When her child says "Mummy" for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."
MANY PEOPLE SAY THAT SPECIAL FAMILIES ARE GIVEN SPECIAL CHILDREN. OTHERS, THAT SPECIAL BABIES CHOOSE THEIR PARENTS CAREFULLY. SADLY I HAVE SEEN ENOUGH CHILDREN WITH DISABILITIES IN MY TIME WHO ARE UNLOVED, UNWANTED OR MALTREATED TO BE RATHER SUSPICIOUS OF EITHER OF THESE SENTIMENTS.
PERHAPS, RATHER, SOME OF US ARE LUCKY ENOUGH TO HAVE LEARNT SUCH A LOT FROM OUR CHILDREN, SAT BACK AND ALLOWED THEM TO TEACH US, THAT THEY HAVE MADE US JUST A TINY BIT WISER, WITH A LITTLE SPRINKLING OF 'SPECIAL', THAN WE WERE BEFORE THEY WERE BORN...
Last week, after my reading of What to Say When a Baby is Born with Down's Syndrome at BritMums Live in London, this comment was left on my blog by another inspirational blogger @northernmum.
I was reduced to a sobbing wreck when reading it. Spiritual, but not formally religious, and somehow driven by an inexplicable inner hunger to change things for all our children, in my own way and in my own time. I've often said how it feels that this all found me and I now cannot stop.
Thank you Erma Bombeck for paying we special needs Mums, who do our very best and still feel guilty that it might not be right, the ultimate compliment.
Please sit down with a cuppa to read this one. You need to give it your full attention, and you may well cry again x
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will never consider a "step" ordinary. When her child says "Mummy" for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."
June 26,2012
We had our 4th echo at cincinnati childrens hospital today. We have no real new news. There is still very little or no flow through the pulmonary valve. We are praying that this changes once Noah arrives and the pressure in his lungs lower. The diagnosis still remains as ebsteins anomoly with either pulmoary atresia or sever pulmonary stenosis.
To say the least everyone we have seen in the last week has been entirely shocked that we are still pregnant. No one thought that we would be here. God has big plans for Noah!!! I just know it. The OB came out and said no one thought you would be here and the cardiologist just are like hell we have to make a plan now. Which still remains as no set surgery plans until after he is delievered and evaluated. We know that we will deliver him at Good Samaritian Hospital where they will stabalize him start umbilical lines and medicines to keep the ductus arterious open after he is born. This is a pathway that connects blood from the right hand side of the heart back to the aorta to keep blood oxygenated bypassing the lungs. He will then be transprted to Cincinnati Childrens hospital where he will be in the cardiac intensive care unit (CICU). This is where they will do an echo lab work and possiably some other test to see what his official diagnosis will be. We are hoping we make it to full term but every day past 32 weeks is a blessing. Everyday currently goes towards weight gain and lung maturity. I am praying that we can make it far enough along that he will not need to be intubated.
We toured the CICU today along with th. It made it very real to me. It was over whelming to think that we may spend a week or even months there.
To say the least everyone we have seen in the last week has been entirely shocked that we are still pregnant. No one thought that we would be here. God has big plans for Noah!!! I just know it. The OB came out and said no one thought you would be here and the cardiologist just are like hell we have to make a plan now. Which still remains as no set surgery plans until after he is delievered and evaluated. We know that we will deliver him at Good Samaritian Hospital where they will stabalize him start umbilical lines and medicines to keep the ductus arterious open after he is born. This is a pathway that connects blood from the right hand side of the heart back to the aorta to keep blood oxygenated bypassing the lungs. He will then be transprted to Cincinnati Childrens hospital where he will be in the cardiac intensive care unit (CICU). This is where they will do an echo lab work and possiably some other test to see what his official diagnosis will be. We are hoping we make it to full term but every day past 32 weeks is a blessing. Everyday currently goes towards weight gain and lung maturity. I am praying that we can make it far enough along that he will not need to be intubated.
We toured the CICU today along with th. It made it very real to me. It was over whelming to think that we may spend a week or even months there.
June 18,2012
The last 10 weeks have been the longest 10 weeks of my life. Who knew that 70 days could go by so slow. But to say the least i am extremely happy we have made it these 10 weeks and i hope we can continue on for another 9 :) but Somedays I wonder if all of these test are needed. Do we really need to see the doctor every week do we need weekly ultrasounds and non stress test twice a week. Should we continue to push for bi-weekly echo's or are monthly ones okay. This is all on top of preregistering for the hospital for delivery and preregistering at children's for Noah. And of course none of these can occur at the same time. Hopefully we can schedule the tours of the CICU at children's with our next echo, this one is looking good so far. Combining the hospital maternity tour and the tour of the NICU where we will be delivering at is proving to be difficult. If people would just call me back things would be a lot less stressful. On top of all of this we are getting married next Sunday :)
Noah is doing well. He has been very active and I can tell he is continuing to grow at a good pace. We will be 30 weeks a
One tomorrow which is a big milestone. Now we get to talk about steroids for lung development and MRI's to evaluate lung tissue development.
I do promise to update more :)
Noah is doing well. He has been very active and I can tell he is continuing to grow at a good pace. We will be 30 weeks a
One tomorrow which is a big milestone. Now we get to talk about steroids for lung development and MRI's to evaluate lung tissue development.
I do promise to update more :)
June 2012
The last month has been very busy for us. It started my our oldest 2 kids finishing school for the year and us setting out on a 10 day journey through Washington DC Philadelphia and NYC. We had a great time. It was hard for me knowing that this could be our last family vacation for a while. But no matter what challanges lie ahead of us we will make sure we spend time together as a family. All the kids care about is swimming anyways :)
As for Noah he is doing well. Growing as expected for a 29 week baby. At our last growth scan during week 28 he weighed 2 pounds 9 ounces :) He measuered in te 50th percentile on everything :) I could not ask for better news. We had an echo during week 27 and it showed that his heart is taking up aproxamently 60% of his chest. This causes concern becuase it compreses his lungs and causes challanges for them growing & developing. This number has stayed consistant though for the last 9 weeks so that has been very encouraging for us. WE have another echo at week 31 and we will know even more then.
We saw the high risk OB in her office for the first time this week. It kind of made everything very real for me. I am going to hav a sick baby I will not be able to hold him on day one I wont be able to nurse him right away. I have to have a repeat c-section so knowing that I cant visit him on day one breaks my heart. The hospital where we will be delivering does allow me to go visit though for 4 hours a day after the first day :) I am trying to hold on the the positive....
I have started doing kick counts which he passes with flying colors everytime. They want to do NST (non-stress test) twice a week which I am not a fan of but that will be discussed more at this weeks appointment. I am happy doing 1 a week on top of my OB appointment and weekly ultrasound appointments :) one more appointment just stresses me out more then I already am.
I am going to try and keep weekly udates from this point on knowing he will be here in 9 weeks at the very most!!! I have started to wash clothes and get things together. It is hard to prepare though knowing he wont be coming home with me when he is 2 days old but each week that passes I know he is getting stronger and bigger and the less his stay in the CICU (cardiac intensive care unit) will be. I never in my life thought that I would pray to stay pregnant but everyday we make it is a day I am very greatful for. If we can make it the next 65 days I will be a very happy momma!!!
Now to set up tours of the maternity center where we be delivering the NICU at the hospital we will be delivering at and the CICU at Cincinnati Childrens.
I pormise to update more often
As for Noah he is doing well. Growing as expected for a 29 week baby. At our last growth scan during week 28 he weighed 2 pounds 9 ounces :) He measuered in te 50th percentile on everything :) I could not ask for better news. We had an echo during week 27 and it showed that his heart is taking up aproxamently 60% of his chest. This causes concern becuase it compreses his lungs and causes challanges for them growing & developing. This number has stayed consistant though for the last 9 weeks so that has been very encouraging for us. WE have another echo at week 31 and we will know even more then.
We saw the high risk OB in her office for the first time this week. It kind of made everything very real for me. I am going to hav a sick baby I will not be able to hold him on day one I wont be able to nurse him right away. I have to have a repeat c-section so knowing that I cant visit him on day one breaks my heart. The hospital where we will be delivering does allow me to go visit though for 4 hours a day after the first day :) I am trying to hold on the the positive....
I have started doing kick counts which he passes with flying colors everytime. They want to do NST (non-stress test) twice a week which I am not a fan of but that will be discussed more at this weeks appointment. I am happy doing 1 a week on top of my OB appointment and weekly ultrasound appointments :) one more appointment just stresses me out more then I already am.
I am going to try and keep weekly udates from this point on knowing he will be here in 9 weeks at the very most!!! I have started to wash clothes and get things together. It is hard to prepare though knowing he wont be coming home with me when he is 2 days old but each week that passes I know he is getting stronger and bigger and the less his stay in the CICU (cardiac intensive care unit) will be. I never in my life thought that I would pray to stay pregnant but everyday we make it is a day I am very greatful for. If we can make it the next 65 days I will be a very happy momma!!!
Now to set up tours of the maternity center where we be delivering the NICU at the hospital we will be delivering at and the CICU at Cincinnati Childrens.
I pormise to update more often
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