On January 14th, we found out it's a boy!!! Can you believe it?? We were shocked. When I was only 11.5 weeks along our Maternal Fetal Medicine physician stated that with 80% certainty that it was a girl, and then at my next regular check up my GP stated after hearing his heartbeat, "well, it sounds like a girl!" We were prepared for either, but I won't lie, I was literally praying for a boy. So when the sono tech scanned between his legs, and I saw what I saw before she stated it, well, I was elated! And then she confirmed it. I started crying, but under control.
Now we have recently gotten the anatomical screen. Based on the UltraScreen at 11.5 weeks, the Quad Screen at 17 weeks, which together are termed the sequential screen, our current baby has a 1/32,000 chance of having any sort of genetic anomolie such as Trisomy Syndromes, and NTD's. Our history states we have a 1/100 chance of having a child with DS, so in the terms of modern medicine this is "good" news.
The only good thing about it in my opinion thus far is that if we did not have a child with DS, that we would be less likely to experience any major medical issues, which would alleviate the scary aspects of facing a surgery with our child again. But, I have to say that my son taught me that it doesn't matter if you have DS or are quote-unquote "normal". He was such an angel, and if God so chooses to bless us with another angel such as my son, I would take him in a heartbeat no questions asked! I am enamored with children with Down Syndrome, they are so uniquely unique just like everyone of us, but much more so. They seem to have a presence that is beyond words. Penn certainly did, and still does.
Okay, I'll get off of my soapbox! We have decided on several names to choose from: Emerson Penn Harding, Leif Penn Harding, Christian Penn Harding, or August Penn Harding. It's difficult for some reason, but I am anxious to start calling him by name. Perhaps we'll figure it out February 9th, that is the day we get our 3d sono in Austin. Can't wait to see this beautiful little mover and shaker!!
Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts
Friday, January 25, 2008
Tuesday, October 30, 2007
No clouds in the sky
It's a beautiful Tuesday, and more importantly the hubby is home with me as it is his day off. I am so excited to get to spend time with him. I love him being around, he has such a spirit for life that it's infectious... I didn't have my daily morning cry yet this morning. I think it's cathartic to get all of my sorrow out early on. I received several emails this morning and was very pleased to have gotten them. It makes me feel that Penn is carrying on. He has inspired people to pursue new ideas that will improve healthcare, and I am so very please by it.
Brad and I are not going to actively share this, but we got our results back from our genetic testing and both of us carry a mutation on the MTHFR. They're opposite mutations, but we each have one which increases our risk of giving life to a child with a congenital heart defect absent even of Down Syndrome. We will be getting fetal echo done when I am 18 weeks. I am only 7 weeks 2 days right now, so it's a ways away. I will be on November 27 at 1pm in Austin getting tested for the nuchal translucency screen.
I spoke with my doctor about the supplementation of the progesterone and because I am showing no signs right now of potential miscarriage, he is not going to supplement me. If he did, he would try to get me to 20-25 level. I was 12 with Penn. So, we'll see what the tests reveal.
Brad and I are not going to actively share this, but we got our results back from our genetic testing and both of us carry a mutation on the MTHFR. They're opposite mutations, but we each have one which increases our risk of giving life to a child with a congenital heart defect absent even of Down Syndrome. We will be getting fetal echo done when I am 18 weeks. I am only 7 weeks 2 days right now, so it's a ways away. I will be on November 27 at 1pm in Austin getting tested for the nuchal translucency screen.
I spoke with my doctor about the supplementation of the progesterone and because I am showing no signs right now of potential miscarriage, he is not going to supplement me. If he did, he would try to get me to 20-25 level. I was 12 with Penn. So, we'll see what the tests reveal.
Thursday, October 11, 2007
The story of Penn
When I was 37 weeks along with my son, Penn River we had a sonogram to try and determine his size. I was expanding at record rate and there was some concern that he might be very big. After the first sono tech could not get an accurate reading of his femur length, she summoned another more experienced tech. She too got roughly the same size femur, 34 weeks, with a head circumfrence of 41 weeks. The demeaner of these two women was what shocked me. It seemed as though they thought something was wrong. It was my sixth sense kicking in. I sobbed the entire rest of the day, and called my physician. He assured us that he did not think anything was wrong, but that if Penn did have some genetic issue it would most likely be something like dwarfism. However, he assured us that my husband had short femurs and so most likely Penn would just be a shorter statured male if anything. So, when after 18 hours of labor propelled my son forth unto the world, the doctor was a little shocked. After 2 hours of waiting to see my son, my physician and a pediatrician came in the room and told us that Penn had a heart defect and the pediatrician told us that he appeared to have Down Syndrome, his nose was one of the major features suggesting so.
They told us that Penn would be transferred for further testing, etc.. to Methodist Childrens in San Antonio. They did ask us if we had a preference, they were just sending him.
Being sent to the NICU in San Antonio, and being in shock from the whole new world we just stepped into set us up to follow the path that was laid out before us. We met physicians in San Antonio that would be seeing him, mainly the cardiologists. We liked them, and they were in our insurance plan. They followed Penn and led us to the surgeon. Weeks before surgery, I began to feel very very bad about it. You know how women can be sometimes, well, I thought that's just how I was being. I had a premonition about the surgery, and my birthday which layed in between all the surgery options. My first fear was confirmed which was the fact that he did not have a good time during surgery.
The entire time we were at Methodist Childrens in San Antonio, which is NOT a dedicated children's hospital, but rather a "wing" of the hospital itself, we were treated as if we were "demanding" dictators. Physicians actually put that in the psych/social section of the progress notes. We were not heard when we wanted people washing their hands, when we actually went to the Chief Nursing Administrator and Infection Control about to no avail. I had the "medical director" actually tell me in a raised voice in front of other staff and my husband's boss's wife, that "you need to stop playing doctor, and be the parents, if you want to focus on things like "hand-washing" etc, be my guest, but allow us to make the medical decisions for your child, we would be happy to help arrange a transfer for you, but you're going to have to find a surgeon to take him on, and you're not going to find anyone that is going to want to take a child that has had complications from surgery." It was an ugly scene. She then refused to treat our son when it was her shift, and she ignored a pulmonary hemmorrhage all day because she didn't want to interact with us. At the end of the day it was an emergent reintubation in order to get his lung back up, this was after giving IPV treatments the previous day, and a pneumothorax that collapsed his other lung the day before that....all things that were ignored or done by the physicians as orders, on top of him having no nutrition, other than fluids. It was the biggest joke of a hospital I have ever, ever witnessed and it came with the most lack of professionalism I have ever known. I had a nurse actually say that Penn "got pissed off". Have you ever known a 3 month old child to get "pissed"? I haven't.
Unfortunately it was too late when we got him transferred. The tipping point was when the hematologist came in while I was away and told my husband while looking at all of the medications that Penn was on, "what are we doing here?" To which my husband responded, "you don't think he's going to make it?" The hema responded, "no, it's been too long." I came in after that physician left, and the cardiologist had come in and rasied hell. I told the cardiologist that if he had endured what our family had in the last five weeks he would leave his profession, and that our son had not even had nutrition for four days.
It was such a nightmare. I relive it over in my head every day and think that there has to be a reason that my husband and I witnessed all of the inadequacies of the system and staff that we did , and that there has to be a reason that our son suffered.
Hopefully, it's to help other families not make the same mistake we did by going to some place that is not specialized.
They told us that Penn would be transferred for further testing, etc.. to Methodist Childrens in San Antonio. They did ask us if we had a preference, they were just sending him.
Being sent to the NICU in San Antonio, and being in shock from the whole new world we just stepped into set us up to follow the path that was laid out before us. We met physicians in San Antonio that would be seeing him, mainly the cardiologists. We liked them, and they were in our insurance plan. They followed Penn and led us to the surgeon. Weeks before surgery, I began to feel very very bad about it. You know how women can be sometimes, well, I thought that's just how I was being. I had a premonition about the surgery, and my birthday which layed in between all the surgery options. My first fear was confirmed which was the fact that he did not have a good time during surgery.
The entire time we were at Methodist Childrens in San Antonio, which is NOT a dedicated children's hospital, but rather a "wing" of the hospital itself, we were treated as if we were "demanding" dictators. Physicians actually put that in the psych/social section of the progress notes. We were not heard when we wanted people washing their hands, when we actually went to the Chief Nursing Administrator and Infection Control about to no avail. I had the "medical director" actually tell me in a raised voice in front of other staff and my husband's boss's wife, that "you need to stop playing doctor, and be the parents, if you want to focus on things like "hand-washing" etc, be my guest, but allow us to make the medical decisions for your child, we would be happy to help arrange a transfer for you, but you're going to have to find a surgeon to take him on, and you're not going to find anyone that is going to want to take a child that has had complications from surgery." It was an ugly scene. She then refused to treat our son when it was her shift, and she ignored a pulmonary hemmorrhage all day because she didn't want to interact with us. At the end of the day it was an emergent reintubation in order to get his lung back up, this was after giving IPV treatments the previous day, and a pneumothorax that collapsed his other lung the day before that....all things that were ignored or done by the physicians as orders, on top of him having no nutrition, other than fluids. It was the biggest joke of a hospital I have ever, ever witnessed and it came with the most lack of professionalism I have ever known. I had a nurse actually say that Penn "got pissed off". Have you ever known a 3 month old child to get "pissed"? I haven't.
Unfortunately it was too late when we got him transferred. The tipping point was when the hematologist came in while I was away and told my husband while looking at all of the medications that Penn was on, "what are we doing here?" To which my husband responded, "you don't think he's going to make it?" The hema responded, "no, it's been too long." I came in after that physician left, and the cardiologist had come in and rasied hell. I told the cardiologist that if he had endured what our family had in the last five weeks he would leave his profession, and that our son had not even had nutrition for four days.
It was such a nightmare. I relive it over in my head every day and think that there has to be a reason that my husband and I witnessed all of the inadequacies of the system and staff that we did , and that there has to be a reason that our son suffered.
Hopefully, it's to help other families not make the same mistake we did by going to some place that is not specialized.
Wednesday, October 10, 2007
Today is a new day...expect change
I just wanted to let everyone know that I have a blog site. I listed as "Children's Hospitals - Penn River" because I want people who are searching for a children's hospital to stumble upon this site. Hopefully it works.
In response to my son's recent passing on September 24th, 2007, I wanted to construct a place for people like me and my husband now after Penn's death, and those that were like us prior to his surgery to go.
My ultimate goal with this site is to inform parents of the necessity of checking out the hospital at which your child will undergo surgery so that the same things that happened to our son, do not happen to your child, or your friend or family member's child.
On July 27th, our son Penn River Harding underwent open heart surgery to correct an AV Canal, a congenital heart defect associated with his diagnosed Trisomy 21, spontaneous translocation.
He never made it home. We began our journey at Methodist "Children's" Hospital in San Antonio, TX. BIG mistake. We transferred him to Texas Children's Hospital, Houston, TX on September 6th, 2007, much too late. Had he began his journey at a hospital that is specialized in care for children, in a Cardiovascular Intensive Care Unit, like Texas Children's, he would be with us here today.
My big message is that despite your confidence in the surgeon, you must also do your research on the hospital at which your child will receive treatment. If a hospital is not dedicated to the care of children, such as Methodist Healthcare System, you are not going to get the best care possible, which is something you MUST do when considering a complicated surgery, like pediatric open heart.
If you have any questions, please email me at tadharding@hotmail.com, and I will be more than happy to get into contact with you.
"God grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference between the two." This biblical verse gave me overwhelming inertia while my son was hospitalized, and still guides me today.
In response to my son's recent passing on September 24th, 2007, I wanted to construct a place for people like me and my husband now after Penn's death, and those that were like us prior to his surgery to go.
My ultimate goal with this site is to inform parents of the necessity of checking out the hospital at which your child will undergo surgery so that the same things that happened to our son, do not happen to your child, or your friend or family member's child.
On July 27th, our son Penn River Harding underwent open heart surgery to correct an AV Canal, a congenital heart defect associated with his diagnosed Trisomy 21, spontaneous translocation.
He never made it home. We began our journey at Methodist "Children's" Hospital in San Antonio, TX. BIG mistake. We transferred him to Texas Children's Hospital, Houston, TX on September 6th, 2007, much too late. Had he began his journey at a hospital that is specialized in care for children, in a Cardiovascular Intensive Care Unit, like Texas Children's, he would be with us here today.
My big message is that despite your confidence in the surgeon, you must also do your research on the hospital at which your child will receive treatment. If a hospital is not dedicated to the care of children, such as Methodist Healthcare System, you are not going to get the best care possible, which is something you MUST do when considering a complicated surgery, like pediatric open heart.
If you have any questions, please email me at tadharding@hotmail.com, and I will be more than happy to get into contact with you.
"God grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference between the two." This biblical verse gave me overwhelming inertia while my son was hospitalized, and still guides me today.
Subscribe to:
Posts (Atom)
