I've learned to try something you are unsure of and if it doesn't work out, ask for forgiveness! I
I'll start out asking for forgiveness, this is a long one! We have some catching up to do! Blogging is new for me (and our family), but we have A LOT going on and being transparent has always been important to me!
So, I thought and thought about our lives the last eight weeks and wondered many times "what is happening and where are we going from here?" Sometimes we just don't know. This is coming from a girl who DOES NOT like change and has worked very hard to accept there are things in life you have control over and things in life you just don't. Somethings we just have to accept and make the best of them! The cup is half full, right?
In late December, POSITIVE, our family would be growing! We were excited to say the least! We survived the holidays without telling a soul! All was going well. We traveled to Florida to spend time with Brian's family and returned to the never ending winter! On February 22nd, in the morning, I went in for a routine OB visit. All looked good, heart rate was normal and other than some morning sickness, I was feeling good. Brian joined me in the afternoon in perinatal and unfortunately, those feelings ended abruptly with our genetics counseling and ultrasound. The ultrasound showed not only one but two major concerns. The first was cystic hygromas (small cysts) on the back of the babies neck and the second was potential serious heart defects. In came the gaggle...nurse, genetic counselor, ultrasound technician, and perinatologist (Dr. McNanley - who provided prenatal care and delivered Max). We were told that additional testing was highly recommended. We changed our original plan from a routine first trimester screen to the NIPT. This test would potentially give us some answers. Of the answers, two were a fatal diagnosis (trisomy 13 & 18) and two were viable babies (trisomy 21-Down syndrome & Turner's syndrome). We were given a booklet on staying hopeful and the number to call if we had questions in the meantime. Our next appointment was 11 LONG days later.
March 6th arrived and we returned to perinatal to see all the familiar faces. Great news, the ultrasound had improved and the baby's heart looked much better! Crazy what 11 days can do! Since there was still evidence of cystic hygromas and overall concerns, we went ahead with the scheduled amniocentesis. We would have preliminary answers in 2 days! That's only 48 hours...we can do this!
On March 8th, I received the call! Our baby would live and bring us much joy! Shortly after, all the emotions started to set in and we began convincing ourselves, we can do this! Our little bundle of joy has Down syndrome! Of course, we were surrounded by love, prayers and encouragement! An immediate and quick reminder of the amazing people in our lives, our friends and family! We love you all!
Since then, we've only had one perinatal appointment. At that appointment, a level 2 ultrasound was completed as well as a fetal echocardiogram. Overall, we received very optimistic news! There are many possible defects in babies born with Down syndrome. Baby Boy Jones (we had to find out the sex if we wanted to look at the results of the genetic testing) most likely has atrioventricular septal (canal) defect. It's the most common heart defect in babies with Down syndrome and is treated with a very successful one time surgery to patch the small hole lying between all 4 chambers of the heart. The surgery is completed anywhere from 2 months of age up to a year depending on how the baby is tolerating life outside of mom (mostly maintaining adequate oxygen levels). We have an appointment on May 2nd with the pediatric cardiologist. At that time, we will get more detailed information on the defect and the treatment. Otherwise, everything else looked normal!
So, until then we sit back and wait for Spring to arrive here in Minnesota! Max is growing up so fast and brings so many smiles and joy to our everyday lives! We are blessed! Brian and I would like to thank you for all your love and support.
Love,
Tara, Brian, Max and Baby Boy Jones
I'll start out asking for forgiveness, this is a long one! We have some catching up to do! Blogging is new for me (and our family), but we have A LOT going on and being transparent has always been important to me!
So, I thought and thought about our lives the last eight weeks and wondered many times "what is happening and where are we going from here?" Sometimes we just don't know. This is coming from a girl who DOES NOT like change and has worked very hard to accept there are things in life you have control over and things in life you just don't. Somethings we just have to accept and make the best of them! The cup is half full, right?
In late December, POSITIVE, our family would be growing! We were excited to say the least! We survived the holidays without telling a soul! All was going well. We traveled to Florida to spend time with Brian's family and returned to the never ending winter! On February 22nd, in the morning, I went in for a routine OB visit. All looked good, heart rate was normal and other than some morning sickness, I was feeling good. Brian joined me in the afternoon in perinatal and unfortunately, those feelings ended abruptly with our genetics counseling and ultrasound. The ultrasound showed not only one but two major concerns. The first was cystic hygromas (small cysts) on the back of the babies neck and the second was potential serious heart defects. In came the gaggle...nurse, genetic counselor, ultrasound technician, and perinatologist (Dr. McNanley - who provided prenatal care and delivered Max). We were told that additional testing was highly recommended. We changed our original plan from a routine first trimester screen to the NIPT. This test would potentially give us some answers. Of the answers, two were a fatal diagnosis (trisomy 13 & 18) and two were viable babies (trisomy 21-Down syndrome & Turner's syndrome). We were given a booklet on staying hopeful and the number to call if we had questions in the meantime. Our next appointment was 11 LONG days later.
March 6th arrived and we returned to perinatal to see all the familiar faces. Great news, the ultrasound had improved and the baby's heart looked much better! Crazy what 11 days can do! Since there was still evidence of cystic hygromas and overall concerns, we went ahead with the scheduled amniocentesis. We would have preliminary answers in 2 days! That's only 48 hours...we can do this!
On March 8th, I received the call! Our baby would live and bring us much joy! Shortly after, all the emotions started to set in and we began convincing ourselves, we can do this! Our little bundle of joy has Down syndrome! Of course, we were surrounded by love, prayers and encouragement! An immediate and quick reminder of the amazing people in our lives, our friends and family! We love you all!
Since then, we've only had one perinatal appointment. At that appointment, a level 2 ultrasound was completed as well as a fetal echocardiogram. Overall, we received very optimistic news! There are many possible defects in babies born with Down syndrome. Baby Boy Jones (we had to find out the sex if we wanted to look at the results of the genetic testing) most likely has atrioventricular septal (canal) defect. It's the most common heart defect in babies with Down syndrome and is treated with a very successful one time surgery to patch the small hole lying between all 4 chambers of the heart. The surgery is completed anywhere from 2 months of age up to a year depending on how the baby is tolerating life outside of mom (mostly maintaining adequate oxygen levels). We have an appointment on May 2nd with the pediatric cardiologist. At that time, we will get more detailed information on the defect and the treatment. Otherwise, everything else looked normal!
So, until then we sit back and wait for Spring to arrive here in Minnesota! Max is growing up so fast and brings so many smiles and joy to our everyday lives! We are blessed! Brian and I would like to thank you for all your love and support.
Love,
Tara, Brian, Max and Baby Boy Jones
Your amazing Tara and Baby Boy Jones is sooo beyond blessed to have you guys!! He’s blessed with the best forsure!!
ReplyDeleteThank you so much! We sure think so! 😘
Delete