October 29th.

Lately I have been stumped, not really sure what to write.  Now that Parker’s heart surgery is over what can I write about that’s actually interesting?   I definitely don’t want to write a blog that is boring.  And because I write with so much emotion and things have been so great I have been almost at a loss for words.   A few times I have started to write but stopped because it just didn’t seem interesting. But today I have finally been inspired for more reasons then just one.

Since my last post, Parker has been doing great.  He turned two and has really started to show his personality.  He is a sweet as can be but he will definitely show you when he’s not happy. Or, if he is not happy with his brother, he will hit his head on the ground or will just hit his big brother.   He’s really just trying to survive in a house with an older brother who rips just about everything out of his little hands.   (We are working on sharing).

 

Since my last post we have been dealing with Parker’s eyes.  We noticed about a year ago that his eye was sometimes lazy. So I immediately took him to the eye doctor at Rady’s and he didn’t seem concerned and told me to come back in six months.   Since then I got a second opinion and the new doctor said that we had two options, Glasses or eye surgery.  Well, being that we had just gotten out of open-heart surgery less then three weeks before that appointment, surgery was the last thing I could even comprehend.  So Parker got glasses.   $300.00 on a pair of little toddler glasses.  Can you believe that?  But they were so cute and so worth every penny if that meant that it would correct his lazy eye.   One day, I tried to look through the glasses and they were so strong It was hard to imagine that his little eyes were that bad!   I decided to bring him back in to make sure the prescription was correct and after just three weeks and spending $300 on new glasses the doctor said that they didn’t work and he would need eye surgery.  BLAH.  It’s a very routine surgery but he would be under for anesthesia for an hour and..  blah-blah-blah…Deep breath.  And what really sucks is that we just hit our out of pocket maximum for the year with Parker so from this point on for the rest of the year everything is supposed to be covered at 100% because his heart surgery was so expensive.  But, Tucker’s Company is changing insurance starting Nov 1 and the surgery is going to cost $10,000 and… it never ends….

Parker with his new glasses
Parker with his new glasses

As you all know we live in San Diego and when Parker was younger we had multiple sedated ECHO’s. Then one day I was inspired by a mom who had just lost her little boy at Rady’s Hospital.  He had Williams Syndrome and had a terrible heart and they went in for a routine procedure under anesthesia and he died.   So I decided to get a second opinion and went to CHLA and discovered that you could do an echo without sedation and that immediately changed our lives. From that point on, we decided to do everything for Parker at CHLA because we felt that they understood Williams Syndrome more then Rady’s San Diego and they understood the risks involved with Anesthesia and Williams kids.   I remember calling our Cardiologist at Rady’s San Diego and getting into it with him because I was so pissed that they unnecessarily put my child’s life at risk multiple times.  And they insisted that you couldn’t get a good echo on a child without sedation.

Fast-forward to post operation for Parker, We decided to try and do all follow-ups in San Diego because it’s so much easier and more convenient for us to not drive to LA.   We met our new cardiologist and they scheduled a follow up Echo for Parker but sedated.  I was so upset.  I didn’t want to put him at risk again and I was so frustrated.  There is a point you become tired of arguing with the doctors.  I started to second-guess myself. But, I went with my gut.   I canceled our appointment and decided to drive up to LA and do a non-sedated echo because apparently LA is the only place that can do it.  SO this gets confusing so try and follow… We have our appointment scheduled for December in LA and I got a random call from Rady’s to schedule our non-sedated echo? So I called them and she said “Your son has Williams Syndrome right?” and I said “yes”.  She said “ we don’t do sedated echo’s on Williams kids anymore”.   WHAT?!!!!!!!!!   Are you kidding me?!   I could not believe it!   They changed their protocol!   After a little boy passing away, after me fighting with them and constantly changing appointments they have finally changed their protocol.  I actually have no idea why they decided to change it and I am 100% sure it has nothing to do with me but I cant help but feel proud of myself for standing by my little man and second guessing everything that doctor said about Sedation.  I feel proud because I was right and they’re finally opening their eyes and changing their protocol.  And although that poor mom who lost her little boy a couple years ago will never get over that pain. She changed my life by sharing her story with me and because of her I started to question doctors and question the use of anesthesia.   I will be forever grateful.   So we have our 1st non-sedated Echo this coming Tuesday in San Diego.  Please pray that the results are great because if they are then we don’t have to go back for another six months!

Today-October 29th 2015.

Today we are 3 months post-op for Parker’s open-heart surgery.

Today also marks our D-Day.  Two years ago we got Parkers diagnosis.  2 years ago today was the worst day of our lives.  That day we endured so much pain and loss.  Loss of the child we had dreamed of.  Loss of the little brother we imagined for Preston.  Scared for a hard life.  Scared of this new world we had just been thrown into.  And although time heals all wounds, and we are so in love and happy with our little boy, we will never forget that day.  We will never forget those feelings.  The day that changed our lives forever.  Diagnosis Day Oct. 29th 2013.

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2 days after Parker’s Diagnosis Halloween 2013. We thought our lives were over. We put a happy face on for Preston.

Parker’s Heart Surgery

I am writing this on August 22nd, 2015 It’s hard to go back to just 3 weeks ago and relive the most difficult days of our lives.

July 29th, 2015 – Tucker, Parker and I said our good byes to Preston and tried to convince him that everything was going to be ok and we would be back soon. We got in the car and had a fairly easy drive up to LA. I felt numb. No tears. Nothing. It was almost like I had nothing left in me. Once we got to the hospital Parker did amazing. We had and EKG, Chest X-Ray, and they took blood. I was amazed at his strength. He cried but he was strong and I was proud of him. He handled everything like a little champ.   Meanwhile throughout the day we were receiving constant messages, and texts and Facebook photos of family and friends wearing Team Parker shirts. Tucker and I were blown away with the support we were receiving. It helped us more then you can imagine. We were blessed to have some of our family & friends drive up that night so they could be there to support us. We decided to have a nice dinner at our hotel with our group of friends. We got the call that Parkers surgery was scheduled for 9am. I was really happy about that time since he had to fast and we wanted to be 1st case of the day since he has Williams Syndrome and is considered to be high risk.

1 hour later we got a call that his surgery got moved to noon. Ugh.. Now I was definitely starting to feel overwhelmed.   I sat at dinner and all I could think about was Parker. He didn’t seem that happy to be there and I didn’t want to stress him out so I took him back to the room.   The second I walked away from the table I started to cry… hard. I just remember walking through the hotel holding my baby and completely sobbing. People were staring at me and I didn’t care.. I couldn’t stop.   By the time we got to the room I was completely hyperventilating I texted my friends who were luckily upstairs and told them I needed them to come up to my room as soon as possible. I was crying so hard that Parker thought I was laughing and I watched him look at himself in the mirror and smile and laugh. I felt so bad for him; He had no idea what was about to happen to him.   I had no idea what was about to happen to him. I was overwhelmed with fear. Within minutes my friends were knocking at my door.   Thank God I had them that night. I’m not sure how I would have made it.   They helped me give him his last bath. The hospital gives you specific instructions on bathing and wiping him down with wipes to help prevent infection. I couldn’t help but cry as I wiped his little body, as he smiled up at me having no idea what was about to happen.   I took a ½ Xanax that the doctor prescribed to me and went to bed.

The next morning since Parker couldn’t eat anything, I decided I wasn’t going to eat either. I didn’t want to eat in front of him so I fasted with him. I packed our bags for the hospital and made sure I had everything he needed, his favorite blankie, pacifier, his new stuffed animal and some clothes.   I called the hospital and let them know that since Parker has Williams Syndrome he has to be well hydrated before surgery. It’s very important and it’s in the WS guidelines. Tucker and I decided to go a little early so maybe they could hook him up with his IV to get the fluid going.   As we left the hotel I started to have a panic attack again. I literally couldn’t breath and I couldn’t stop crying. I had to stop at Walgreens on the way and I remember wandering around the store crying thinking Tucker was going to have to come in and get me.   I didn’t think I was going to make it.

As we pulled up to CHLA my heart was pounding and I did everything I could to pull myself together. We asked the Valet man to take a family photo of us. I couldn’t help but wonder, was this out last picture together? It was really hard.

I tried so hard to smile for this picture.
I tried so hard to smile for this picture.

 

Once we checked in they told us they had to take Parkers blood again. Ugh… We brought him in and I told the lady which arm and she didn’t listen and she kept poking him over and over until he was screaming. Then she tried the other arm and it worked.   I knew this was only the beginning and really nothing compared to what we were about to endure.

Waiting to be taken back to surgery
Waiting to be taken back to surgery

We waited around a lot. It seemed like hours..   I kept telling everyone that he needed to be hooked up to IV’s because he has WS and it’s very important for them to be very hydrated. Kids who aren’t can die. I had my WS friends texting me, telling me “he needs to be hydrated”, sending me the guidelines and telling me to reschedule the surgery. No one was listening to me I felt helpless. It was now 11:30am. 30 min before scheduled surgery and Parker was still not hooked up to IV.   Finally the head Anesthesiologist came out and let me know that he would be fine. They don’t start IV because it stresses the kids out even more and its not good for their hearts.   They are very familiar with Williams Syndrome and he is in really good hands. There is a point when you just have to trust… so I did. At 12:15pm they gave Parker something called a happy drug. It would take the edge off and help him to not cry when we were separated.   They then came over and said “it’s time” I held my baby as we walked to the double doors. He didn’t want to go to the 1st nurse, then he put his arms out to the 2nd nurse and we kissed him goodbye and watched our baby slowly be taken away…..   Tucker and I sat in the corner holding each other crying. I cry writing this…. A feeling I will never forget. So many months and years of worry. I played that moment in my mind for so long and it finally happened. And now we wait….

The nurses taking Parker to the OR
The nurses taking Parker to the OR

We walked downstairs holding hands and went to the cafeteria and were greeted with a sea of blue Team Parker shirts. Family and friends were reading and working and sitting around the table patiently waiting for us. We cried and hugged each other. They made sure we ate, drank water and were side tracked as much as possible. My phone rang at 2:45pm. Parker was out of surgery. Everything went great. 3 patches in about 2 hours.   Parker had a blood transfusion, Parker was on bypass, and they stopped his heart. When I think of what he went through it blows my mind. Medicine is amazing.

 

Tucker and I practically ran upstairs to see our baby.   We walked in and he laid there asleep. His arms were tied down to the bed. He had a breathing tube in, a line coming out of his neck, his stomach, and his heart. Monitors all over him. I had seen pictures before but nothing really prepared you for that.   But we didn’t care, we made it and in our minds that was the hardest part. That night our friends ordered food and we sat outside and had a glass of wine and celebrated Parker and everything we had just went through. We were so grateful. Around 9:00pm we went upstairs and little did we know things were really about to get hard.   Parker was now coming off anesthesia and was in a tremendous amount of pain. He was arching his back and crying except you couldn’t hear anything because his breathing tubes, you could just see tears coming out of his eyes. It took multiple nurses and Tucker holding him down and I sat in the corner and cried feeling completely helpless. They could not get his pain managed so they gave him a paralyzing drug that basically paralyzed his whole body.   I wanted to die. I was terrified. After about 45 min, the drug kicked in and he slept soundly throughout the night. So did I. I took another ½ Xanax after asking the nurse if she thought it was appropriate. I didn’t want to be irresponsible. After seeing me completely panicking she encouraged me to go to sleep.   They had one nurse in his room at all times so I felt like he was in good hands.

Parker right after Surgery
Parker right after Surgery

July 31 –I woke up at 6am. Parker was sleeping and I got a pretty good night sleep.   I noticed a weird pulsing on Parkers tummy. I asked the nurse if this was normal and she said she had never seen it before.   She was waiting for the doctor to come take a look. The doctor said that it was either just a twitch in his tummy because of the blood flow, or worst case scenario there was an aneurism and they would have to go back in and operate. They ordered and echo and ultrasound to take a better look.   Tucker and I walked downstairs to grab a coffee. Tucker was panicking. We really didn’t think we could make it through a second surgery… As we walked upstairs back to our room we saw all the nurses and doctors surrounding Parkers bed.   Apparently we just missed a big scare. Parker’s blood pressure dropped to 30.   He gave everyone a scare apparently and they said thank god we weren’t there to see it. And good news his ultrasound came back beautiful and he didn’t need surgery and the pulsing went away.

Then he started coming off his pain medicine again. It’s crazy to watch the nurses trying to find the right dosage of each drug to make him feel ok. It took 4 of us to hold Parker down and it took over an hour. They said they had him on so many drugs that you and I would be face first on the ground but it didn’t affect him at all.   I guess kids with syndromes have different pain receptors. They said he was the strongest 2 year old they had ever seen. He’s 19 pounds and it took 4 of us to hold him down. It was a nightmare. It was scary and I cried for most of the time. It is the most helpless feeling as a mom to watch your child in pain and not be able to hold him and comfort him.

Parker did great the rest of that day and by the evening they took his breathing tube out.

The next day they moved him out of CICU to Acute Care.   This was supposed to be where they start preparing us to go home.   I remember our first night in the room. We had a terrible nurse who wasn’t helpful. Parker had a fever and he was shaking and I was left alone in the room with him. 72 hours post op and I can’t hold him and he has a fever and is shaking and I had no help. I kept asking for a doctor and no one ever came. Parker was so drugged up, he laid in his crib and stared at the lights and didn’t sleep at all the whole night. He also didn’t make a sound. It was weird.

 

Over the next few days we took more tubes out, lowered his medicines and tried to get him eating. He wasn’t really interested in food or liquids and they wouldn’t let us leave until he was drinking enough fluids. It took me convincing the doctors and nurses that I thought he would be more comfortable at home and he would be more interested in eating and drinking once we were there. I also had to learn to hold him or scoop him up which would have to be the way I picked him up for the next 8 weeks.

 

After 6 days we finally got to go home. It was an amazing feeling. Tucker and I were leaving the hospital with our baby. All 3 of us together and Parker was healthy and doing great. We were so excited to get home and see Preston. It had been 7 days since we had seen him, which is the longest ever. We couldn’t get there fast enough. We are so grateful for our family, friends, surgeon, nurses, and hospital staff. All the support we received was beyond amazing. There are no words for the amount of gratitude we felt that day. We will never forget it.

Us leaving CHLA
Us leaving CHLA

So today, August 22, 2015 we celebrate Parkers 2nd birthday with a huge sense of relief. Our hearts are full and we are forever grateful.

Parker turns 2 today! He is doing AMAZING!
Parker turns 2 today! He is doing AMAZING!

9 Days

Not to be negative but I am really freaking out… Today I had a panic attack. Today I started hyperventilating and couldn’t calm myself down. Today it all became very real.

I was on a walk and decided to call my friend whose son also has Williams Syndrome and just recently had open-heart surgery.   The minute she picked up the phone I felt my throat closing in. I felt like I had a large knot filling up my throat and I couldn’t catch my breath. I realized that next week, next Thursday Parker is having open-heart surgery. This month has gone by so fast. I honestly didn’t realize that it is happening next week until I took a few minutes to myself and went for a walk. I started second guessing our decision. Questioning why are we doing this?   He seems so healthy. He is so happy. What if something happened? I could never forgive myself. I sat down in the middle of the park and cried. This really is the most difficult thing I have ever had to deal with. I called my husband in a complete panic and he helped calm me down.

Luckily I also had an appointment with my therapist. She said that if I am questing why we are doing this then I need to call Parkers Doctor and ask, so I did.   Dr. Badron said she 100% feels like Parker needs the surgery. It’s the perfect time to do it now because he’s healthy. She described it like a plumber coming to your house and telling you that you have a pipe that’s going to explode and flood your whole house if you don’t fix it. Would you wait until the pipe explodes or would you fix it as soon as possible to avoid the flood? That definitely made me feel more confident. But I am still scared as hell. She said Parker would be there for 7-10 days if he has absolutely no complications. So my big dreams of being home by Monday are just big dreams.

I’m not trying to have a pity party but..Why?? Why is this happening to us? Why did my sweet little boy get chosen to have a harder life then all the other kids?   Why have we been chosen to endure such pain? I cant stand when people say that we were chosen because we can handle it because any parent I know would do anything for their babies. Anyone I know would step up in the most challenging times.. Why? Because, you have no choice, we have no choice.

On a very positive note I decided to finally post on Facebook about Parker and his Williams Syndrome. The outpouring of love and support has been AMAZING.   I honestly couldn’t believe how many people reached their hands and hearts out to help us. So many people shared stories of their heart surgeries or their kids surgeries. I had a friend from High School who I haven’t seen in 20 years offer to help with our care at CHLA. Making sure Parker is in the best hands and we are taken care of. I had college friends text and message me in tears offering support and prayers.  I have neighbors offering to set up meals for us.   One of my best friends set up t-shirts for friends and family to buy showing support for our family. My brother in law designed the t-shirts.   I thought about 50 -75 shirts would be bought.. We sold over 140!!  And most importantly my best friend from high school is donating blood for Parker’s blood transfusion!

The love we have received will never be forgotten.  We feel it and we are grateful.

9 days from today… I’m really not sure how I’m going to make it.

 

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Little guy has no idea. ;-(

The Weight Of The World

It’s heavy, it hurts, and it’s too much to carry..   The weight of the world feels like its on our shoulders and I feel like I could crumble. We are making plans for open-heart surgery for our 1.5-year-old baby boy.   Words I never imagined I would have to say.

This week we have had the pressure of deciding between two hospitals and two amazing Surgeons.  CHLA & Rady’s Children’s Hospital.   We have heard great things about both surgeons.  We have heard great things about both hospitals. CHLA is 2+ hours on a good day.  I have always felt the most comfortable at CHLA.  Maybe because its a big hospital, maybe because its in a huge city.  I have always felt like we are in good hands there.  I have heard Dr. Starnes  (CHLA) is the best heart Surgeon on the West Coast.  Rady’s is 15 min from our home. Dr. Lombardi is also an amazing surgeon.  They have repaired 10 hearts like Parkers (SVAS) in the last 4 years.  CHLA has performed 100’s.

It’s so much pressure.  The pressure of making the right decision.  Having to go with our gut feeling.  Making sure our gut feeling is the right feeling for our baby boy’s life.  We are worried about Preston and want to make sure he feels happy and not alone or lonely.  We worry if he will feel abandoned because we are all away from him.   He is in a phase where he is very attached to us and gets very upset when we leave the house even to do the smallest things.

Parker seems so healthy.  It’s hard to imagine what we are about to do such major surgery on a little boy who doesn’t seem sick.  He’s so happy.  He is into everything.  He loves to play with his brother. He loves to read books.  He loves to eat.  He loves anything that’s not healthy.  He loves carbs.  He loves sweets.  He is an angel that has blessed our lives in a way that is unimaginable.

So we made the decision, CHLA.   After the hospital changing the surgery date on us a couple times we are back to the date that we originally wanted.  July 30, 2015.  Just about 1 month from today.   They say we will be in the hospital for about 5-7 days.   I know everyone who takes the time to read this blog has an interest in Parker.  I know that most who read this are our closest friends and family.  I am asking for Prayers, lots of prayers, that our family gets through this and that God watches over Parker and the surgeons.  I pray that they don’t switch our surgery date again.  I pray that Preston has so much fun while we are gone that he barely notices.  I pray that he understands as much as he can, that we have to fix his brothers broken heart and we will back as soon as we can.  I pray that Tucker and I have the strength to make it though the surgery day,  Most likely the hardest day of our lives.

We will get though this.  He is strong.  We will get through this and look back at this with a sense of relief knowing this nightmare is finally over.   I dream of that day.

 

Our Broken Heart

It’s been a while since I’ve updated my blog.  Life is so busy lately.   I have thought about updating everyone on how amazing Parker is doing but just haven’t taken the time, until now.   Parker is really doing great.  He is climbing on everything, cruising furniture, and pushing his toys around the house.  He loves books, musical instruments and LOVES anything his big brother Preston does.   About a month ago we started speech therapy because he wasn’t saying any consonants, only vowels.  So one night we were at dinner and he just started babbling.  DADA, TATA, NANA, RARA.   It was AMAZING.   Unfortunately, no MAMA, but I was still thrilled that he said DADA. 🙂  It was a big milestone!

I did recently notice his first Williams trait.  We were at the grocery store and Parker was sitting in the cart while I was paying.  He put his arms up in the air so that a man who was in line would pick him up.. a complete stranger.  He has started to do that a few times since then.  It’s very sweet but I know I have to start teaching him the difference between strangers & friends.

Last week we met a new Cardiologist at Rady’s in San Diego just to get another opinion, and hopefully find a new Cardiologist. After looking at all of Parkers past Echos, & the MRI results,  he suggested that we wait on surgery.   He also wanted to do a Cat Scan on Parker to look at his Arteries. He didn’t think we should rush into surgery because based on what he saw; Parker’s Stenosis was moderate and no reason to rush.  He also, suggested that we meet with Dr. Lombardi a top cardiovascular surgeon in San Diego to get his opinion.   He said that Rady’s was changing their policies & procedures for kids with Williams Syndrome.  Since WS is so rare, they have been learning as they go and adapting new procedures along the way.  Obviously that isn’t very comforting.  I left the appointment more confused then ever.

Yesterday May 14th, sucked.  We had our appointment with a top cardiovascular surgeon at CHLA, Dr. Starnes.   Our appointment was at noon.  We left SD at 9:30am.  We didn’t meet with Dr. Starnes until 2:45.  He had emergency surgery so of course they were priority.  But it is never easy with a 20 month old to drive 2 hours and wait.

Dr. Starnes met us in his conference room.  He showed us a 3d or maybe even 4d picture of Parkers heart.  It was amazing to see.  He showed us the narrowing in Parkers valves and began to describe what he was going to do to Parker.

“Parker needs surgery sooner then later, maybe with in the next month or two. Parker’s stenosis is moderate to severe.”

“The arch is the problem, I will filet it and patch it.  We also need to fix the branch of his heart so the blood can flow easier”

“There is risk, because we have to drop his body temperature to very cold, there is a 1-2% chance that because they’re stopping the blood flow to his brain that there could be damage.   Brain damage.”

“We will stop his heart.”

“He will be given a blood transfusion. “

And it’s not just about the surgery but the after care too.  He will be heavily medicated after so he is not in any pain. He will have a breathing tube down his throat and will slowly take him off all machines and get hims breathing on his own.  If all goes well he could be home in 5-10 days.

Tucker and I didn’t say much to each other as we walked out of the hospital.  We got in the car and cried.  It’s all so overwhelming.  It’s not fair.  It’s so much..  too much.  How do we get through this?  The fear of loss and the risks of surgery are unbearable to imagine.    My heart aches.

We booked Parker’s surgery in LA on July 29th for check in & July 30th for surgery.  (The 29th…  again, doesn’t seem to be so lucky anymore)   We have an appointment on June 22 with the surgeon in San Diego to get his opinion but for now I feel the most comfortable in LA.

It was pouring rain in LA.  We left at the worst possible time 3:45pm.  It took us 2 hours to get to Orange County and Parker was pissed.  We stopped at a nice restaurant and tried to let the traffic pass.  Tucker, Parker and I enjoyed steak and potatoes and a great bottle of wine.  And after 21 months of me saying mama to parker over & over again…  He finally said “MAMA”.   I have never been so happy  & so proud, and so emotional.  🙂

IMG_2815Pure joy, always.

 

Convenience (Blog entry #8)

After four phone calls and an email, 1 week later,  we finally got the results.   Our Cardiologist said that she recommends surgery within the year.  “Whenever it is convenient for us”.    She feels it is best to do the surgery when he is healthy & strong.  She feels like anytime this year is the right time to do it.   She said she doesn’t recommend surgery lightly and for Parker to have a good quality of life this is our option.   It’s so hard to make a decision like this.  Open-heart surgery for my baby who doesn’t seem like he even needs it.  He seems so healthy.   It’s hard to pick the right time to risk his life.  When is the right time to do major surgery?  It’s very overwhelming and part of me wants to put it off and not think about it for a year and part of me wants to just hurry up and get it over with and move on.  We have so many decisions.  Which hospital?  LA? SD? Who do we feel most comfortable with?  Where is our baby going to be in the best hands? Where will we stay?  Where will Preston feel the most comfortable and not alone or confused?  It’s a lot of pressure for us.  There is a lot riding on our decision.

On the Williams Syndrome page I follow, I see some kids that have been Moderate or severe and have gotten better!  Or never got the surgery and are fine.  So of course I wonder why do they get better?   Is there a chance that Parker could too?   Is there a chance that we could do the surgery unnecessarily?   Could he outgrow this?  It all seems like such a guessing game.  At some point you have to trust the doctors.  Our Cardiologist says that where Parker’s valve is narrowing, is more risky and his quality of life would be compromised.  We, of course, don’t want that.  We want him to be able to run with the other kids.  Play soccer with his brother and not be limited in his life.  We want him to be able to do anything he wants and not be held back because his heart.  So, I guess our next step is to meet the team and top surgeons at both hospitals and then come up with a game plan. But I am thinking this summer.

Summer 2015.

MRI (Blog Entry #7)

Today was rough. Probably one of the most emotionally draining days I have been through…ever.   Today was Parkers Cardiac MRI at Childrens Hospital LA.   The day I have been dreading because we had to put him under anesthesia, which I have been terrified about, being that kids with WS can have a reaction to Anesthesia. I have been playing this day in my mind for a while now. Trying to stay positive but also scared. Scared of having to walk away from Parker and give him to the doctors and say good-bye and wait until he wakes up.   That fear of walking away; the fear of him not waking up. I had the story of the little boy Rowan who went in for a routine procedure, they dropped his big sister at school and then took him in for his MRI and heart Cath and he never woke up. His sister asking.. “Where is Rowan?” That poor family who had to leave the hospital without their baby. That fear of loss and not having control was so overwhelming, while I was trying to think positive and put a smile on my face. It’s hard to stay positive on the inside when the risk is so high. It’s easier said then done.

Needless to say it was a stressful day yesterday leading up to this.   I set my alarm for 1:00am so I could feed Parker his last bottle allowed before he went in for his procedure.   Then we woke up at 3:45am and got in the car to drive 2.5 hours to LA for our 6:30am check in. They are amazing there and tried to make us all feel comfortable. They took his vitals and then we went into the room where we changed him into a hospital gown and they put his IV in.  We had to hold him down while he screamed and cried. I basically held him down by hugging him and holding his arms down. They then tried to distract him with bubbles and and iPad which worked well.  Once we got the IV in the Anesthesiologist came to talk to us about how Anesthesia is typically not very risky but because of Parkers Williams Syndrome he is a higher risk. There is a chance of cardiac arrest.. He said he would take care of our baby and that he has a 2 month old a 3 year old at home. “He’s in good hands” .  I couldn’t look at Tucker but I knew he was crying.  We were both so scared.  Only one of us was allowed back so Tucker gave him a kiss and I walked him into the MRI room. I held him in my arms and while they put the anesthesia in his IV he cried because it was stinging him.  3 seconds later he passed out. Dead weight with his mouth open. I was startled because it happened so quickly and so abruptly. I started crying harder, I had to lay him on the table and kiss him goodbye and walk out…

I cry just writing this.. It was an awful feeling.   It was the longest 2 hours of my life. I have never felt so scared and helpless in my life.  I thought about his WS and my fears for our future and none of that mattered anymore. I just wanted him to pull through and I just wanted to see his little smile again.

Two hours went by and they called us when he was in the recovery room. We went in there and waited for him to wake up. Then we drove home.. the 3 of us. 😉  He smiled and clapped the whole way home. I have never loved anyone more then I did today. It made me appreciate life and how fragile it is and how fortunate I am. My boys are such a blessing.   My husband is my rock. My family is everything to me.   We should get the results in the next couple days.. Until then I think I’ll take a deep breath and not worry about anything.

 

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In the waiting room
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A little groggy, just woke up
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Smiling at the nurse

 

We bought him a new teddy bear.
We bought him a new teddy bear.
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Bath time.. happy boys.
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The smile that melts my heart and lights up a room.


Worry. Anticipation. Deep Breaths. (Entry #6)

Hello!  It has been a while. I have been so busy with the holidays and I feel like I haven’t had a minute to myself or my thoughts.   We had a great Christmas.  The kids got everything and more and I got the refrigerator for my garage that I have been asking for.  I am really excited about that.  😉

January 8th is definitely starting to weigh heavily on my mind.  It has been easy to push my thoughts and fears aside being that we just went through all the holidays but now that they’re gone I am starting to worry.   January 8th is our next appointment at CHLA for Parkers Echocardiogram.  I am nervous because Parker has definitely become more aware of what’s going on and he really gets anxiety at the doctor’s offices.  So I am worried that we wont be able to get the Echo done this time without sedation medicine.  I am worried because I feel like our doctor is going to recommend heart surgery as the next step.  I am praying for a miracle but also have to be realistic.   The anticipation is so overwhelming.  I am so nervous about how his little body will react to the anesthesia.  He is a tough little guy but some of the stuff I read on the Williams Syndrome page fills my mind with worry & fear.  But the site also helps me be more prepared and aware of the risks that kids with WS have, which I am so grateful for.

I am scared and really don’t know how I will find the strength to get through open-heart surgery.  Yes I know technology is great these days and that these doctors do surgeries on babies smaller then Parker all the time but none of that makes me feel better.  None of that makes this any easier.  This is my little baby boy and I can’t help but worry.  I can’t help but be scared.  I just want this to be over.   He has become such an important part of our family.  He is a joy to be around and we all love him so much.  Preston loves him and has the sweetest relationship with him.  He makes us laugh and smile all day long.   I just want this to be over and for everything to be ok.  I look at his sweet little face and just want him to be healthy.   I am asking for lots of prayers.  I know I am praying daily… for a miracle.

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D-Day (Entry # 5)

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We are quickly coming up on Parker’s D-Day, which is the day he was diagnosed with Williams Syndrome.  As I reflect back on the past year I am filled with so many emotions.  Happy, sad, frustrated, angry, scared, envious, & proud.  It’s been an emotional roller coaster.

I remember when we got the call, October 29th, 2013.   We were beyond devastated and so incredibly sad.   We felt as though our lives were over. We felt like our lives had changed for the worse.

This last year we have learned so much about Williams Syndrome.    We have learned about echocardiograms, and heart catheters and anesthesia and sedations.  We have started to learn how to navigate the insurance systems.  We have spent so much time at doctor appointments and children’s hospitals.   We have been introduced to a world that we didn’t even know existed.    We spend about 4 hours a week in therapy.  We do physical therapy, occupational therapy, feeding therapy, music therapy and soon speech therapy.  Parker has to be taught to do a lot of the things that most typical children do automatically. But he learns really quickly and he is strong and smart!  He started crawling a couple weeks after his 1st birthday!  He started clapping a few days ago.  He pulls him self up and is so curious about everything.  So many of our fears slowly are forgotten as we see him reach milestones.  Milestones that you can take for granted with a typical child become so much more appreciated and celebrated.

One of my biggest fears was the relationship between Preston & Parker.  We always dreamed of having two children close in age so they could hopefully be the best of friends.  When we first got the diagnosis we were so upset.  We felt like Preston was robbed of the brother we wanted him to have.   And although I still sometimes mourn the relationship that I dreamed of them having I smile knowing that Preston will be such a better and more compassionate person having a little brother with special needs.   So far they have a normal brother relationship.   Preston loves his little brother and gives him hugs & kisses multiple times a day.  Parker follows his big brother Preston everywhere and gets into all of his toys.  Preston is constantly taking them away from Parker.  Preston has no idea that his brother is behind.  He has no idea that his brother has Williams Syndrome.  They’re just typical brothers and I can’t wait to see their relationship blossom.

On Oct 29, 2013 we were handed a key. A key to a new journey.  A key to appreciate life more.  A key to being more compassionate.   A key to a community of people who we’ve never met but yet have so much in common with.  We were handed a key to being a better person.  A key to being a better friend.  Parker has shown us more this year then we have ever dreamed possible.  Parker is the key to our hearts.

There is a poem that I was told to read when we first got the diagnosis.  “Welcome To Holland”  by Emily Perl Kingsley.  If you haven’t read it I suggest you do.  I’ll attach the link.  It so perfectly describes our journey this past year.

http://www.our-kids.org/archives/Holland.html

 

 

Preston and Parker…  Buddies

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So You’re Saying There’s a Chance…. A Second Chance (Entry #4)

We decided to get a second opinion for Parker’s heart. I wasn’t sure even where to begin. Do I get a second opinion at Rady’s Children’s Hospital which is the same place where we go now? Or do I go to a completely new hospital? The problem is that Williams Syndrome is so rare, 1 in 10,000. I want to go to someone that understands Williams Syndrome more then we do. I don’t want to be the doctor or the anesthesiologist… I just want to be the mom. You can’t just Google Cardiologists with experience with Williams Syndrome. It’s just not that easy. Luckily for us there is Facebook. We belong to a private group on Facebook that is just for parents with children with Williams Syndrome. Although it can be overwhelming at times, It can also be a great way to ask questions to other moms and talk to people who just get it.

So, I was speaking with one of the moms on Facebook and she mentioned I should get a second opinion at Children’s Hospital Los Angeles. She gave me a few suggestions of doctors. I called and tried to get in but had no luck. A few weeks later her daughter was sick in the hospital (I knew because we know everything about everyone from Facebook.. right?) Anyway, this mom messaged me and said that she happened to run into the Cardiologist and told her about Parker and gave me the Doctors personal cell and email address! Are you kidding me? Who does this? Who thinks of someone they have never met while their child is sick in the hospital?

Two days later I got a call from the scheduler to book his appointment for a second opinion. I needed to get Parker in before his Oct 6th Echocardiogram under Anesthesia and possible Heart Cath.

On September 25th we drove up to LA at 5am. I was nervous. What if the Cardiologist had something completely different to say? What if I leave the appointment even more confused then before? Luckily, my husband calmed me down and we made the 2.5hr drive.

So here is the most amazing part of this story. I thought I was bringing in Parkers past records and she was going to give me a second opinion. She ordered her own set of tests, one of them being an ECHO. So guess what… we did an Echo with NO DRUGS AT ALL. We didn’t sedate him. We didn’t make him fast. He didn’t gag and cry. He laid there with a TV on and I distracted him with toys! Are you FUC*%NG KIDDING ME? This is an option??? Why did I not know this? Why have we done 3 sedated ECHO’s since Parker was born and put his life at risk? Why in the hell do we have an appointment on Oct 6th to put him under General Anesthesia which is the most risky thing you can do to a child with Williams Syndrome? Why did I bring my concerns up to our Cardiologist about Anesthesia multiple times and I didn’t know this was an option!? I was an emotional wreck. I cried and was furious and relieved all at the same time. I feel like we just missed getting hit by a car. I was SO nervous for my babies life that I scheduled family photos before his procedure just in case he didn’t make it. ARE YOU KIDDING ME?

His heart has not changed from the last Echo we did. The numbers stayed the same. Although she says open heart surgery is inevitable. I cancelled his appointment on October 6th and I could not be happier about it. One day at a time and for now I am celebrating.

 

One of the photos we took on Sept 29th.. 1 week before his scheduled procedure
One of the photos we took on Sept 29th.. 1 week before his scheduled procedure
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Best Buddies
Spear Family 2014
Spear Family 2014