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 :)
Tuesday, July 31, 2012
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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