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.

 

10 Comments

  1. Stay strong mama!!! You are doing an amazing job taking care of this amazing little human and in our eyes you and Tucker are very heroic for all the courage you have! We are here for you and support you whenever you need it! Love you

  2. I’m so glad you posted this. It’s wonderful to get an update! I miss you guys so much. I’m sorry Parker needs surgery so soon. I hope the SD Dr. can help or shed some light. Get as many opinions as possible. I’ll keep you in my prays. Love you all!

  3. And what a great MAMA he has! Parker is so strong. You and Tucker are so strong. Like amazingly strong. Stay strong babe. You guys ARE handling this. It’s all so overwhelming but you are handling it, and handling it so well. We are in awe of your courage and strength. Parker is just getting started with all his amazement. 🙂 We love you guys and are here for you always.

  4. Parker is blessed to have you as a Mom, so loved! What a amazing feeling hearing him say Mama! We are all here for you, go with your gut only the patents know what’s right for there little guy!

  5. You are so strong and so is Parker. You have made and will continue to make all the right choices for him so listen to yourself because YOU know what’s best. A mother’s instinct is so powerful. We love you guys and will support in anyway we can. Hugs to all 4 of you!

  6. Beautifully written, Sarah. I can only imagine how difficult that appointment must have been last week. It sounds like you are making a very well-thought out and researched decision. He is such strong, happy little guy! We are all here to help out with whatever you need.

  7. I love that Parker said “Mama”! Yay!! He is such a cutie. It must be very confusing to get such different messages from the various hospitals. Stay strong! By the way, if anyone in your family matches Parker’s blood type, he/she can donate blood for the procedure. We donated blood for Emmy’s surgery, and it turned out to be a lot easier than I thought it would be! (I figured there would be more red tape, but everything was very organized.) Hugs!! -Vanessa

  8. I know this is such a hard and scary path you all our on. I am keeping you all in my prayers especially precious Parker! xoxoxxoo

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