Sedations & Echos (Entry #3)

I got a call today from cardiology to schedule Parkers upcoming heart procedure.  I immediately was over come with emotions… Let me back track a little. Since Parker was born we have done an Echocardiogram every 3 months per the Cardiologists orders. This is to monitor his heart and make sure that his SVAS (Supravalular Aortic Stenosis or Pulmonary Stenosis)  hasn’t progressed from mild to moderate or severe. We have done all 3 under sedation medicine. This is to ensure the best possible pictures. Each time Parker has had to fast for 6 hours prior. When we get there he eats a little bit of medicine that makes him sleep. He gags, chokes and his eyes water. It’s awful. This in done in an area outside the hospital and with a nurse and lab technition. It makes for a long hard day. We usually meet with the doctor after and he goes over the test results with us.

This last time we went in was when Parker was 9 months old. His heart progressed from Mild – Moderate. We were so upset. He seemed so great and so healthy and I just couldn’t believe it. The doctor said that open-heart surgery was “most likely” and we would have to monitor him closely. Because Parkers heart has gotten worse the doctor suggested that we schedule and EKG for our next appointment since it is now more risky to sedate him. The reason it is risky is because when you sedate someone their blood pressure drops and because the narrowing in his valves is getting worse he has more risk of going into cardiac arrest.

So over the next 5 months we went into see our Cardiologist to do EKG’s and listen to his heart. The last time we went in he suggested that we take a closer look at his heart and see how it’s doing. So apparently we are faced with a very scary decision. 1. Do we do an Echo under the sedation medicine, which is less risky to Parker but if something terrible happens while he’s under (blood pressure dropping or cardiac arrest) we are not in the hands of professional doctors or anesthesiologists. We are with the nurse and ultrasound technician. 2. Our cardiologist suggested that we do a CT scan or Echo under general anesthesia and although this is way more risky to Parker he is in the hands of doctors who can help him if something goes wrong. Also, they have more control over the medicine since it’s administered from an anesthesiologist. Now, did I mention that anesthesia is VERY risky for kids with Williams Syndrome? Kids die. Actually a little boy passed away at the exact hospital in December.. Pretty much the same exact situation. This is a decision that no parent wants to make. I am not a doctor. I sell shampoo and my husband sells wine. How do we decide on something so life threatening to our baby boy? There comes a point when you have to trust. So we decided to book the Echo under general anesthesia. So that is the call I just receieved. Oct 6th 2014. We have to take him in, prepare to spend the night and bring his favorite toy or blanket.. Can someone please shoot me.

Our last Echo..  Right before we found out his heart has gone from Mild - Moderate
Our last Echo.. Right before we found out his heart has gone from Mild – Moderate
Parker & I at the hospital  waiting for the sedation medicine to kick in so he will fall asleep and they can do an Echo to look at his heart closer.
Parker & I at the hospital waiting for the sedation medicine to kick in. Soon he will fall asleep and they can do an Echo to take a closer look at his heart.

We Love You Just The Way You Are (Entry #2)

I will never forget the day. It’s kind of like we all know where we were and what we were doing on 9/11. That is how I feel about Oct 29, 2013. (My lucky number is 29, remember?)

We got a call from the cardiologist at 7:00pm on Tuesday evening. I remember sitting in our family room holding Parker who had recently become colicky and cried almost 24 hours a day. Preston, my oldest son, was eating dinner, and Tucker, my husband, was in the kitchen. I ran into our office, holding Parker and spoke with the cardiologist as Tucker watched me through our glass doors. The Doctor told me to grab a pen and paper. Parker had a narrowing in his Aortic valve called SVAS – Supravalvular Aortic Stenosis. It was mild right now. He also had Pulmonary Stenosis which was also mild. He said that Parker would need close monitoring and could possibly need heart surgery in the future. This, of course, was very hard to hear. Our child has cardiovascular problems? Open heart surgery? You wouldn’t wish this upon your parents let alone your little baby. But medicine is so advanced these days and we can get through this…right?

This is so hard to type. As I sit here I am literally shaking and my heart is racing…. I will never forget the piece of paper and what it looked like. The next two words that would change our lives FOREVER: “I want you to write down Williams Syndrome.” I will never forget that piece of paper. I will never forget writing those words. He said, “try not to look on the Internet because it will scare you, and we don’t know for sure if he was Williams Syndrome.” He referred me to a genetics doctor to take a test (FISH test) which would give us the official diagnosis.

We did exactly what he told us not to do.. We looked up Williams Syndrome and we wanted to die. “ Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music. WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. “ We saw a laundry list of health problems, mental delays, physical delays, physical features (upturned nose, puffy eye lids, starburst eyes, wide mouth) that were common in people with Williams Syndrome. We looked at Parker and saw a few of these features but still weren’t exactly sure.

It seemed as though our lives were over. Our perfect life did not seem perfect anymore. We cried for days, 24 hours a day. We were devastated beyond words. Days and weeks went by and we tried to pick up the pieces. It felt as though we were suffering the death of the child that we thought we were going to have. The dreams we had for our youngest boy were gone. I wanted to run…far, far away. I was scared. We were scared. But we had no choice but to love this baby and give him the best life we could. Friends and family would say things like, “You were chosen.” “God doesn’t give you anything you can’t handle.” “God gives special children to special people.” Although these sayings are so incredibly hard to understand at times I do believe they are true… I have to believe they are true.

So here we are. Almost one year later and I have made the decision to come out to the world. I am by no means ashamed of our life. I am not ashamed of my baby boy. I just wasn’t ready to face the truth. I wasn’t ready to be judged. I didn’t want to be talked about. But after a year I am finally ready. We are finally ready. I am proud of my family, and I am so proud of my son, Parker. He is truly an angel on earth. He has already shown my husband and me more about life and love in one year then we could have ever imagined. We have a little boy with special needs. And we have no idea what the future holds but we are taking everything day by day. We will do anything and everything for Parker to give him the best life possible. I’m not going to lie, some days are harder then others. It has definitely been a roller coaster of emotions but we just have to take it one day at a time. This is why I stared a blog – to share our journey and hopefully help others and bring awareness to this rare genetic condition that has affected our baby…and our family.

 

This was talked 2 days after we got the news about Parker.  It took every bit of strength for us to go on with Halloween.  We put on a brave face and did it for Preston.
This was taken 2 days after we got the news about Parker. It took every bit of strength for us to go on with Halloween. We put on a brave face and did it for Preston.

The Beginning (Start Here)

It’s hard to know exactly how to start this blog.   I am not a writer. But I am very opinionated. I’m not really sure why I wanted to start a blog except maybe it would be a nice way to share my story, my life and the hard times that we all go through. Although none of us have the same story we all have our ups & downs and we get through them.. one day at a time.  I thought maybe If I could help one person the way that I was inspired then my blog would be a success..

So, I guess I will start from the beginning. For those of you that don’t know. I have been happily married for 6 years and have 2 beautiful boys. Preston is 3.5 years old and my littlest Parker just turned 1. I am going to mostly talk about Parker.. for now.

I found out I was pregnant with my 2nd baby on December 26th 2013.  I remember being overcome with emotion. Its such an exciting time, there is so much unknown. I wondered, am I having a boy? Am I going to get a girl? I am feeling pretty confident that this time it will be a girl and I will be blessed with one of each.   Since I am over 35 I did the new testing called Verifi to test for Down Syndrome and a lot of the other abnormalities but the main reason I did it was so I could find out if I was having a boy or girl! You can find out as early as 10 weeks and that was just about as much time as I could handle not knowing.   I really don’t know how people wait to find out what they’re having..   The suspense and the unknown just kills me!     So.. at 11 weeks I got the call. I barely paid attention to the results for any chromosomal abnormalities because I was so excited and nervous to hear if it was boy or girl.. my heart was pounding so bad I could hear it!   Was I going to get the little girl I was dying for or were we going to have another beautiful baby boy.   So the doctor left me a message as I had asked her too with the results.   It was a BOY..   I was overcome with emotion..   I only wanted 2 kids.. I already have a boy.. I wanted a girl. I wanted 1 of each. I will never have the baby girl I always dreamed of.   Who will I get my nails done with? Who will I buy cute girl clothes for? I was devastated.     Now don’t get me wrong, I LOVE my son. I wouldn’t change him for anything, but I wanted a girl so badly and I wasn’t going to get one…

A few days went by and I eventually got over it. Now did I mention that the results for the Verify test came back great.   1 in 27,000 chance that he would have Down Syndrome .. So I knew we were in the clear.

My pregnancy was great.   Both of my pregnancies were great. I think I am a pretty good pregnant person.   I gained 35 pounds with my 1st pregnancy and I was doing even better with this one.   But people kept telling me that I seemed small and so around 34 weeks I brought it to my Doctors attention that everyone was saying I’m small.. was I?   She measured me and I was a little small. She then ordered an ultrasound. Well, the baby was infact small.. really small. They measured his abdomen, femor bone and his head circumference. He was measuring at the 1 & 2 percentile!!!   We freaked out. What did this mean?   They diagnosed it as IUGR (intrauterine growth restriction) which basically means that your baby isn’t getting the nutrients it needs whether it be from your placenta or umbilical cord. So I went in for all of the ultra sounds, and testing and basically spent my last month of pregnancy in the hospital or the doctors office. Around 37 weeks he was measuring at about 4lbs give or take and he really wasn’t growing anymore so they decided to get him out. I already had a scheduled c-section on Aug 29 (which is my lucky number) but they decided he needed to come out 1 week earlier. Aug 22.   Did I mention that 29 is my lucky number? It’s my birthday, it was the day that Preston my oldest was due and now it was the day Parker was supposed to be born. So having him on the 22 was definitely messing with my good luck. But I was excited to get him here and see his face and make sure he was healthy and ok!

I remember the drive to the hospital. My husband was overcome with nerves.   He was so nervous and just wanted our new baby boy to be healthy. We just didn’t know.. Was he going to have short limbs? Was he going to look different? He was measuring so small!   I on the other hand felt pretty confident and really tried not to worry about things. We are healthy. We are all so healthy. I really wasn’t concerned.

Our newest baby Parker was born at 5:45pm on August 22, 2013 through a C-section. He came out 5lbs 3oz and 16inches. He was a peanut but he was perfect! No short limbs..   Nothing was wrong. He was perfect.   I loved him. We loved him. He was small and besides the fact that he was really loud.. I mean REALLY LOUD.. he was so sweet.. I felt at ease. It was so much easier then the 1st. It was perfect. We had a family. We had two beautiful boys. 2.5 years apart. They were going be best friends, go to the same school, ride bikes together, and get into trouble together.. They were going to be everything what we had hoped and dreamed for.. My husband and I both have sibling but 10 years younger so we were excited to have this family dynamic. Our dreams came true.

Our first family picture with our new baby Parker
Our first family picture with our new baby Parker

 

Preston meeting Baby Parker for the 1st time
Preston meeting Baby Parker for the 1st time

Most of the 1st few weeks I spent trying to get Parkers weight up. He had dropped below 5lb’s and my job was to get this baby fattened up.   We spent a lot of time at the doctor weighing him and making sure he was on track.. We had a lot of making up to do since he was so little.   Around 6 weeks they discovered a heart murmur. They sent us to a cardiologist as a precaution. Heart murmurs are very common and again I wasn’t worried. Our cardiologist decided to look at it a little closer and so we did a sedated Echocardiogram . We anxiously awaited the results..   Little did we know our lives were about to change forever..