Well, we met with a Genetics Counselor at our new Perinatologist up at the U Hospital. Dr's have been telling us for a while now that there is a possibility of Jefferson having Down Syndrome. This heart defect is common with Downs which gives him a 20-50% chance of having it. Now that doesn't seem like a very high percentage, but there still is that chance.
I don't think that this percentage will effect us in any way. My blood test at the beginning of the pregnancy was negative, and he doesn't show any other signs of having Down Syndrome in any ultrasound. His body's measurements all have been completely normal, and he seems to be measuring over a week to two weeks ahead of schedule. I really do not think that this will be the case with him.
I have had 3 relatives, 1 sister and 2 cousins, that have all been told during pregnancy that their child was either tested positive for Downs or has features that are similar to those whom have Downs. All of which children came out to be perfectly normal. Maybe a big head, or short little legs, but the kids have all come out completely normal. This comforts me a little, knowing that family members have had this same problem with uncertainty while pregnant and then having perfect little babies. I think that's why I am not too worried about baby Jefferson and the probability of him having it. The tests can be a false positive and the ultrasounds can just be measurements of a typical Tuckett baby (short legs).
We have been given many options for different tests that we can do to test for this chromosome abnormality. But come on, what is the purpose of an amniocentesis test when there are so many things that can go wrong with poking a needle into the uterus? Why do you risk the life of your baby over a little test, when you can find out for sure in a few short months when he is born. Plus, your asking the person that had to be held down by 3 nurses just to get one shot, to get a big needle stuck into your belly, um no Thank You! Then there is a very new blood test that can read the babies blood in your blood and see if there is a chromosome abnormality in his blood. But after a $200+/- bill, and after waiting 2 weeks for the results, you still have that probability of it being a false positive. Then after waiting those 2 weeks to find out the results, he will be here in 8 short weeks. And how are you suppose to prepare for that? You cannot really prepare or plan for a child with a CHD or Downs. Everything could completely change once he is here, which is making it really hard since I am an avid planner.
My husband told me, "I want to know so we can plan and prepare for it." But how does one prepare for a Down Syndrome child? From my understanding, the chromosome abnormality will not really be a factor when he is a baby. His development will obviously be slower and he could possibly take longer than most kids, but you cannot really prepare for that. Heart defects also slow down growth for children any ways, but there is nothing you can do to prepare for that.
So I don't plan on getting any tests done. But I do plan on loving this baby to pieces every chance I get. I cannot wait to finally be able to hold him and look him in the eyes and know that he is mine, forever! Hopefully I will get the chance after he is born, before he is whisked away for tests and monitoring. I'm so grateful for modern technology and medicine, but some times you just have to wait it out. He will be here in 8 more weeks, and then the real fun will begin!
I love you already Jefferson Daniel! I cannot wait to meet you!
Monday, September 23, 2013
Friday, September 6, 2013
Shout Out!!
From the very first Cardiologist appointment, the Cardi Counselor gave me the folder of information about Jefferson's heart defect and a local support group on Facebook called Intermountain Healing Hearts.
I went home that night after the appointment and applied to be in the group and Facebook friended the group. I just have to say that these people in this group are amazing. They helped me calm down and realize that there is nothing that I can worry about right now. I need to enjoy this pregnancy and enjoy every minute I have him in me healthy and happy. They have answered my questions that I have had and have comforted me, even though I have never met any of them. They are so supportive and helpful and we may not have the same problems with our heart babies, but they seem to know what I am going through and always offer words of encouragement. They are amazing and I am so grateful to be apart of such an amazing group of people. So Thank You Intermountain Healing Hearts! You all are an inspiration!!
Everything Happens for a Reason
It can be quite funny how things work out the way they do. My worst fears going into this pregnancy were that I would have to be put on bed rest again and could possibly loose my job. I thought I had it all planned out perfectly. I am a planner, I have to have things planned out weeks, months some times years in advance.
I found out last year that I needed to have surgery on my deviated septum. With my planning, I wanted to have it at the beginning of the year so that I could max out my deductible for my insurance and then have a baby later than year, and the insurance would have to pay for it all. I thought that was pretty smart. So I had my surgery January 9, 2013 and everything went great. It was the best money ever spent on myself. Being able to finally breathe without blowing my nose every 5 seconds was heaven.
A couple months later we found out we were pregnant. Everything was going just as planned. I called to schedule our first appointment with the Midwife that delivered Stella. The office told me that she did not deliver any more and I would need to choose a different Dr. I talked around with a few of my friends and thought that going with a Dr instead of a Midwife was probably better this time around since I would more than likely need a cerclage. I didn't think that a Midwife would be able to perform a surgery like that. I decided to go with Dr Kristine Zelenkov at Ogden Women's Clinic. It was quite the coincidence that just a month prior Ogden Clinic had bought out the Ogden Women's Clinic and had all of my health records.
At the first appointment with Dr Zelenkov, she convinced me that a cerclage was not needed. She said that in most cases it does more damage than good because it is poking a needle into a muscle that would make it weaker than it already was. I trusted her judgement and sighed with relief. I didn't want to have to be put under again and be on bed rest for a week or more till the stitches healed. That was one less thing to worry about.
Dr Zelenkov also told us at that first appointment that she delivered at just about all of the local hospitals, Davis, Ogden Regional, McKay Dee, Logan, and even University Hospital on an occasion. That didn't really matter to me at the time because I wanted to deliver at Ogden Regional again. It was such a great experience with Stella, I wanted the same for this new little guy. But it wasn't until a few months later when we sat down with the Cardiologist at Primary Children's that they told me that I would need to deliver at the University Hospital so that he can be close to Primary Children's if he needed transferred there. Its funny how that works out just great, I don't need to change Doctors so that I can deliver at the University since my OB already has privileges at that hospital.
You know what else is a blessing in disguise, although it is about an hour away, that is still pretty close to live to such a prestigious hospital as Primary Children's Medical Center. You know what else is convenient, my sister lives only a few miles away, so when Jefferson is at the hospital I can stay with her and not have to drive very far to go up and see and feed him. That will be a little less hectic.
Its also a blessing that he doesn't have to have surgery right after he is born. He can live with the defect until he is a little bigger and stronger. What else is pretty amazing, how even though I may not have to be put on bed rest like I did with Stella, I have such an amazing job that supports me and told me to take as long as I needed for Jefferson when he has his surgery. It is so comforting to know that the Salt Lake County Sheriff's office is family oriented and wants us to put our family first.
Best of all, we had our last Cardiologist appointment until after Jeffers is born last week. It was not as hard of an appointment as the first one was. Andrew was able to come to the appointment with me. We actually had Stella checked over with an EKG to make sure her heart was fine. The Dr said that she had a slight murmur that would you could hear when sick or coughing, but nothing that would cause her any problems in life. So she is perfectly normal! YAY! Then we had Jeffers appointment right after. Andrew got the full run down on what exactly he has and I was able to get all of the questions I had built up over the past 6 weeks answered. It turns out that Jefferson will have to be in the NICU for about one day after he is born and be monitored for about a week after birth before he is discharged. Once he is discharged, he will be just like a normal baby. He should not have any problems and just needs the same treatment as any other newborn. Once his surgery comes, he will only have to be in the hospital for a maximum of 2 weeks and then home for about a month for healing and recovering. After that, he will be a normal child. He shouldn't need heart monitors or oxygen or anything like that. What a relief! I have read that some parents have had to quarantine their heart babies for up to 6 months so that they do not get exposed to germs. It was such a weight lifted off to know that he will be a normal baby after this surgery.
I know that there will be challenges ahead, but I know that through our faith and prayer that our Heavenly Father will help and guide us through this next journey in our life. I already cannot wait to hold our sweet baby Jefferson in 10 short weeks. He is a lively little boy already and I know he will have a good fight in him once he is born. I know he will be tough enough to get through this but we will be blessed.
Its so crazy how things work out!
I found out last year that I needed to have surgery on my deviated septum. With my planning, I wanted to have it at the beginning of the year so that I could max out my deductible for my insurance and then have a baby later than year, and the insurance would have to pay for it all. I thought that was pretty smart. So I had my surgery January 9, 2013 and everything went great. It was the best money ever spent on myself. Being able to finally breathe without blowing my nose every 5 seconds was heaven.
A couple months later we found out we were pregnant. Everything was going just as planned. I called to schedule our first appointment with the Midwife that delivered Stella. The office told me that she did not deliver any more and I would need to choose a different Dr. I talked around with a few of my friends and thought that going with a Dr instead of a Midwife was probably better this time around since I would more than likely need a cerclage. I didn't think that a Midwife would be able to perform a surgery like that. I decided to go with Dr Kristine Zelenkov at Ogden Women's Clinic. It was quite the coincidence that just a month prior Ogden Clinic had bought out the Ogden Women's Clinic and had all of my health records.
At the first appointment with Dr Zelenkov, she convinced me that a cerclage was not needed. She said that in most cases it does more damage than good because it is poking a needle into a muscle that would make it weaker than it already was. I trusted her judgement and sighed with relief. I didn't want to have to be put under again and be on bed rest for a week or more till the stitches healed. That was one less thing to worry about.
Dr Zelenkov also told us at that first appointment that she delivered at just about all of the local hospitals, Davis, Ogden Regional, McKay Dee, Logan, and even University Hospital on an occasion. That didn't really matter to me at the time because I wanted to deliver at Ogden Regional again. It was such a great experience with Stella, I wanted the same for this new little guy. But it wasn't until a few months later when we sat down with the Cardiologist at Primary Children's that they told me that I would need to deliver at the University Hospital so that he can be close to Primary Children's if he needed transferred there. Its funny how that works out just great, I don't need to change Doctors so that I can deliver at the University since my OB already has privileges at that hospital.
You know what else is a blessing in disguise, although it is about an hour away, that is still pretty close to live to such a prestigious hospital as Primary Children's Medical Center. You know what else is convenient, my sister lives only a few miles away, so when Jefferson is at the hospital I can stay with her and not have to drive very far to go up and see and feed him. That will be a little less hectic.
Its also a blessing that he doesn't have to have surgery right after he is born. He can live with the defect until he is a little bigger and stronger. What else is pretty amazing, how even though I may not have to be put on bed rest like I did with Stella, I have such an amazing job that supports me and told me to take as long as I needed for Jefferson when he has his surgery. It is so comforting to know that the Salt Lake County Sheriff's office is family oriented and wants us to put our family first.
Best of all, we had our last Cardiologist appointment until after Jeffers is born last week. It was not as hard of an appointment as the first one was. Andrew was able to come to the appointment with me. We actually had Stella checked over with an EKG to make sure her heart was fine. The Dr said that she had a slight murmur that would you could hear when sick or coughing, but nothing that would cause her any problems in life. So she is perfectly normal! YAY! Then we had Jeffers appointment right after. Andrew got the full run down on what exactly he has and I was able to get all of the questions I had built up over the past 6 weeks answered. It turns out that Jefferson will have to be in the NICU for about one day after he is born and be monitored for about a week after birth before he is discharged. Once he is discharged, he will be just like a normal baby. He should not have any problems and just needs the same treatment as any other newborn. Once his surgery comes, he will only have to be in the hospital for a maximum of 2 weeks and then home for about a month for healing and recovering. After that, he will be a normal child. He shouldn't need heart monitors or oxygen or anything like that. What a relief! I have read that some parents have had to quarantine their heart babies for up to 6 months so that they do not get exposed to germs. It was such a weight lifted off to know that he will be a normal baby after this surgery.
I know that there will be challenges ahead, but I know that through our faith and prayer that our Heavenly Father will help and guide us through this next journey in our life. I already cannot wait to hold our sweet baby Jefferson in 10 short weeks. He is a lively little boy already and I know he will have a good fight in him once he is born. I know he will be tough enough to get through this but we will be blessed.
Its so crazy how things work out!
Thursday, September 5, 2013
Priesthood Blessings are a Gift from Heavenly Father
We are so blessed to live in these times. Times, where we have the ability to have the Priesthood here on earth. I am so unbelievably grateful for the amazing priesthood holders in my family. For my amazing husband who keeps me grounded and will give me a blessing any time I need. For teaching our daughter how to pray properly and how talking to our Heavenly Father is important and should be done daily. I am eternally grateful for our amazing friends and family (specifically, Dan Warwood (Drew's father), Jesse Rowe, Joel Loesh and Dirk Talbot) who have come at our beck and call any time we have needed a priesthood blessings. It is so comforting to know that we have such amazing friends and family that I know love and support us. We are blessed to be able to live so close to them and to have them when we need them most.
I am so lucky to have an amazing Father In Law that just shows up on his way home from work, the day after finding out about Jefferson's heart problem, to help Andrew give me a blessing. It is amazing how in just a few minutes you can go from being completely terrified to calm and at peace. Priesthood Blessings are a gift from our Heavenly Father and I am so grateful to be able to have that in my house. I have not had a break down since before that blessing. The blessing Andrew gave me helped me feel peace with what is to come. He helped me realize that everything will be ok. We have to put our faith in our Heavenly Father to help get us through this next year. We know that he will be ok. He is lucky in that he can wait to have his surgery until after he is a little bit older and stronger and will be able to heal from the surgery faster. This in itself is a blessing. I know that if we put our faith in our Heavenly Father that everything will work out in the end. I am so glad to be able to have the gospel in our lives and to know that my family is eternal and will last through eternity. I love this church and love to be a part of it.
I am so lucky to have an amazing Father In Law that just shows up on his way home from work, the day after finding out about Jefferson's heart problem, to help Andrew give me a blessing. It is amazing how in just a few minutes you can go from being completely terrified to calm and at peace. Priesthood Blessings are a gift from our Heavenly Father and I am so grateful to be able to have that in my house. I have not had a break down since before that blessing. The blessing Andrew gave me helped me feel peace with what is to come. He helped me realize that everything will be ok. We have to put our faith in our Heavenly Father to help get us through this next year. We know that he will be ok. He is lucky in that he can wait to have his surgery until after he is a little bit older and stronger and will be able to heal from the surgery faster. This in itself is a blessing. I know that if we put our faith in our Heavenly Father that everything will work out in the end. I am so glad to be able to have the gospel in our lives and to know that my family is eternal and will last through eternity. I love this church and love to be a part of it.
Primary Childrens Medical Center
Well over a month ago, we had our appointment to have an Echocardiogram done on baby Jefferson. Andrew had to work so Stella and I went to the Cardiologist to have a Fetal Echo (basically an ultrasound on his heart) done. Since I thought it was just a simple hole in his heart I was not worried. Stella was born with a heart murmur and it went away on its own. So I was not worried at all, I just thought of it as another ultrasound.
Stella did great, she was so quiet and calm the entire ultrasound and sat there and watched her movie. The Echo was over an hour long and they made sure to get plenty of pictures of his heart. Next the Cardiologist, Dr Pinto, took us into a conference room (the initial room we were suppose to go in was occupied) and she carried a binder with her. I got a little worried. Usually most Dr just talk to you in the ultrasound room or in a exam room, but a conference room, that really got my heart going. So we sat down and I got the movies going again for Stella to occupy her as Dr Pinto started to tell me what was going on with his heart.
Now let me throw in this little disclaimer, I admit it, and Andrew even has pointed it out. But I have some sort of ADD when it comes to trying to listen intently. So as for the appointment and the initial shock, I do not remember everything that she told me.
Doctor Pinto began by showing me pictures of a healthy heart and then what is wrong with his heart. She called it AVSD, Atrioventricular Septal Defect.
Just hearing the words that my little baby will have to undergo Open Heart Surgery at such a young age was such a shock. I would have never imagined something like this happening to my unborn child. From then on what she said kind of went in one ear and out the other as I was trying to control myself from having a complete melt down.
She asked us to come back in 6 weeks to do another scan of his heart and to make sure that Andrew was there so that he could know exactly what was going on.
Dr Pinto was so nice at trying to console me and tell me everything was going to be ok. She gave Stella a little purple Hippo TY beanie baby to take home and a folder with information about his heart defect and I quickly booked it to the car because I felt a melt down coming.
I got Stella and myself in the car and quickly closed the doors. I sobbed. I have never cried that hard in my entire life. It felt like my whole world was collapsing in on me. How could my sweet innocent baby have to go through an invasive surgery at such a young age. There was nothing I could do to help him. Nothing that I could do to fix the problem or to take the eminent pain away. The damage was done. The only thing that helped calm me down was hearing Stella's sweet voice "Mommy please dont cry." She kept saying that over and over until I finally got out of the car and went into the back seat and just held her. She is such an amazing little girl and her not wanting me to be sad melted my heart into a million pieces.
It was a really rough day. It was unbelievably hard to take in those words, Open Heart Surgery by myself. But some how I made it through the day. I had promised Stella that I would take her to the Zoo after the appointment, so I sucked it up and we spent a few hours at the Zoo. We got home from the Zoo and Stella went right down for a nap. I sat in my rocking chair with a box of tissues and just cried. It literally wasn't until Stella woke up when I slowly calmed myself down. Stella again said to me "Mommy, please dont cry," and came and climbed into the chair with me and gave me a big hug. It was going to take several days for these crying fits to ease up, I knew that. Even just the thought of him, or an ultrasound picture just made me start crying.
I just had to try telling myself that everything was going to be ok.
Here we go!
Why Hello Again!!
It has been a very long time since my last family blog post. Daily lives got ahead of us and before you know it, Stella will be turning 3 and we will be welcoming baby Jefferson into the world in a couple of months. So here is the scoop on Mr Jefferson. We found out a couple months ago that he has a CHD (Congenital Heart Defect) called AVSD (Atrioventricular Septal Defect) that will require OHS (Open Heart Surgery) between 4 months to a year of his life. (I'm giving you the abbreviations now so I don't have to spell them all out every time in the future) So this will be a way to get our experience out in cyber space so if anyone wants to read or relate, they can follow our journey, or hopefully help you along yours.
So here is the story of how it all came to be:
During one of my routine appointments to the Perinatologist at Obstetrix at Ogden Regional, where I was suppose to be monitored for my cervix, the sonographer saw something off with his heart. Now with my pregnancy with Stella, I had an "incompetent cervix" and was dialated to a 1 at 26 weeks and was put on bed rest for 3 months. It is suppose to be a problem with every pregnancy, but my cervix with Jefferson is above normal and extra long. Thank Goodness!!
The sonographer briefly pointed it out to us but made Dr Kathrine Gestland aware of the possible problem. Dr Gestland just thought it was just a murmur at first and wanted to check his heart again in 3 weeks to see if it had changed.
Three weeks later we came back for the follow up appointment. His heart had shown no change in the past 3 weeks. There was a definite hole in the heart and other valve issues. Our Perinatologist diagnosed it as AVSD and suggested we saw a Cardiologist at Primary Children's Hospital to have a Fetal Echo to see if they see the same problem.
Dr Gestland was amazing, and so was the sonographer we saw, I think her name is Rose! We are so grateful for her and her amazing eye in catching this defect. Although there is not much you can prepare for, it is so nice to know what we will be going through next year so that we can plan on time off, and healing and care for our baby Jefferson. We are so blessed to live in a time when we have the technology and amazing Doctors to be able to figure this out early and to help guide us through the process. And we are so privileged to be able to live near amazing Hospitals like Ogden Regional and Primary Children's. I know that our baby Jefferson will be in some of the best hands in the world.
So here begins our journey with our beautiful little "Heart Baby."
It has been a very long time since my last family blog post. Daily lives got ahead of us and before you know it, Stella will be turning 3 and we will be welcoming baby Jefferson into the world in a couple of months. So here is the scoop on Mr Jefferson. We found out a couple months ago that he has a CHD (Congenital Heart Defect) called AVSD (Atrioventricular Septal Defect) that will require OHS (Open Heart Surgery) between 4 months to a year of his life. (I'm giving you the abbreviations now so I don't have to spell them all out every time in the future) So this will be a way to get our experience out in cyber space so if anyone wants to read or relate, they can follow our journey, or hopefully help you along yours.
So here is the story of how it all came to be:
During one of my routine appointments to the Perinatologist at Obstetrix at Ogden Regional, where I was suppose to be monitored for my cervix, the sonographer saw something off with his heart. Now with my pregnancy with Stella, I had an "incompetent cervix" and was dialated to a 1 at 26 weeks and was put on bed rest for 3 months. It is suppose to be a problem with every pregnancy, but my cervix with Jefferson is above normal and extra long. Thank Goodness!!
The sonographer briefly pointed it out to us but made Dr Kathrine Gestland aware of the possible problem. Dr Gestland just thought it was just a murmur at first and wanted to check his heart again in 3 weeks to see if it had changed.
Three weeks later we came back for the follow up appointment. His heart had shown no change in the past 3 weeks. There was a definite hole in the heart and other valve issues. Our Perinatologist diagnosed it as AVSD and suggested we saw a Cardiologist at Primary Children's Hospital to have a Fetal Echo to see if they see the same problem.
Dr Gestland was amazing, and so was the sonographer we saw, I think her name is Rose! We are so grateful for her and her amazing eye in catching this defect. Although there is not much you can prepare for, it is so nice to know what we will be going through next year so that we can plan on time off, and healing and care for our baby Jefferson. We are so blessed to live in a time when we have the technology and amazing Doctors to be able to figure this out early and to help guide us through the process. And we are so privileged to be able to live near amazing Hospitals like Ogden Regional and Primary Children's. I know that our baby Jefferson will be in some of the best hands in the world.
So here begins our journey with our beautiful little "Heart Baby."
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