CHD Week, A Perfect Time for a Cardiology Appointment

12291133_1105169376168503_3669892933410979358_oI feel anxious. Scared. Unsure. I go on Facebook. Bury my face in my phone, the distraction of other peoples lives, an escape from my reality. Then with one single flick of my thumb it hits me. Like a ton of bricks. My PTSD kicks in. I feel my heart racing. My chest feels tight and I feel panicked.

A mom. Doing her best. Raising Awareness for Congenital Heart Defects (CHD) has posted a picture of her child fighting for their life, hooked up to a million meds, lines coming from everywhere, a freshly cut open chest with drainage tubes, or even worst a chest that had to be left open to allow for swelling.

It takes me right back to a place of seeing this little person, that I love so much, fighting for his life, and I am completely powerless in helping him. It reminds me of all he has been through. It reminds me of the three times I’ve seen my son like that. On a bed, almost lifeless. A million machines. Beeping, wondering if that’s an okay beep or if something is wrong. Hearing the nurse say “the first 48 hours are very critical.” It reminds me of all the times I stood by his bedside desperately begging that he make it, that I get more time with him. It reminds me of having to hand him over and trust that these strangers are going to take care of my baby. It reminds me of this fight. That he needs more surgery, that he will never be ‘normal.’ That he will never be fixed. That I will have to hand him over again. That tomorrow isnt promised. That this is a life long journey.

I have moments where I forget. Where he is just being a typical 4 year old. Then I am quickly reminded that he is struggling to keep up with his peers and it hits me. All theses thoughts race through my mind. Some are positive, lots are not. I wonder things. I look back and reflect. Lots of times I am grateful. Mostly I am grateful but I am scared. Shitless.

My mind races

I wonder how many more surgeries he will have to have?

Why does my son, this innocent little boy, have to go through so much?

How am I going to be strong enough when I have to hand him over again?

Will he get to be an adult?

He cant even go to dance class anymore, he gets too winded. That fucking sucks. He loves dance. How unfair.

Do I push surgery? What about his quality of life? He cant keep up with his friends. I want him to be able to keep up. What if I do push surgery and he doesnt make it? I could never forgive myself.

Did I make the right decision to do the bivent. He is repaired but now he will have to have another surgery and Fontan could have been the last and final surgery.

Will he hate me later, for all I have put him through. I understand compassionate care and why parents choose to let their baby pass, but I have chosen to fight with him as long as he is willing to fight. Will he agree when he is….if he gets to grow up to be old enough to reflect?

I cant live without him.

I should take a million pictures. I want all these memories!

Im being selfish. So many parents and children have it worse than we do. I should be grateful. Carson is here, he is mostly thriving, and I should just be positive.

My son is badass.

So Is my daughter. She loves her brother with her whole being. She completes my little family. Am I doing enough to make her feel special too?

Ive got this, I was chosen to be his mom for a reason.

Normal things are hard sometimes. How will I do this? How can I do this? I shouldnt have to. No parent should.

I need to plan, and save, and live and make memories.

 

And now, after todays appointment:

I am wondering how  long is too long.

How sick is sick enough.

What about quality of life?

I dont have extra. How are we going to be able to make it to Boston when its time?

Will insurance cover it this time?

Boston finally got back to Carson’s cardiologist here. It’s his opinion that surgery should wait. He thinks the risk of surgery is greater than the risk of waiting.

Carson has a wall of his heart that is blocking the blood flow of the blood traveling from the ventricle to the aorta. Its MODERATE and the only way to fix this is to operate. The problem is that the wall of your heart is where all the electrons are that tell your heart to pump. Cutting out the part of his heart that is causing the narrowing comes with HUGE risks of heart block. Meaning the heart will no longer beat on its own and he will require a pacemaker. Plus all the “Normal” (insert eyeroll) risks of open heart surgery. He has had his chest opened three times and has significant scar tissue. It takes longer and longer each time to open him up and even get to his heart. He has conduit in his heart that will have to be changed as he grows so, without having talked to Boston, I am assuming they would also like to keep the number of open heart surgeries down as much as possible. Great news. Surgery isnt coming so soon. However, it leaves me wondering. More unsure. I have a million questions. I have no answers. I have a son and daughter who I love more than life and Id like to keep them forever. I plan on addressing my concerns to his cardiologist in Boston and then we will go from there.

I went into today appointment thinking Id get a copy of his echo (ultrasound of his heart) and send it to Boston, asking them to schedule surgery. I left todays appointment happy that surgery isnt so close but it left me wondering, and uncertain.

You can find us here. In this grey area.

 

 

 

 

 

It’s Been A While

I haven’t updated this. It’s been over 2 years, and the last post was about Alison, though she is just as important too.

We have been through a lot, so lets play catch up.

Carson is 4 years old. He is doing well, and is full of life and attitude. He is smart, and so animated. He loves adventure and is sometimes timid. He likes things that are familiar and is obsessed with Disneyland and space. He loves Sheriff Calie and Paw Patrol. He is such a joy and such a light. And Alison. My sweet girl is already 2! She is spunky and sassy. She knows what she wants and will stop at nothing. She is a snuggle bug who always wants to be close to her mommy or brother. She is starting to get shy around people she doesnt know but is very protective of the people she knows and loves. The bond that Carson and Alison have is amazing! Being their mommy is the best job in the world.

When Carson was 20 months old we traveled to Boston from California to have a bi-vent repair done. We traveled to Boston because our home hospital wanted to do a Fontan on him, which would keep his heart as a single ventricle. This wasn’t a horrible option but with him having two ventricles, with a hole between them it wasn’t ideal. So I sought the opinion of Boston Children’s Hospital and they said yes they could do the Bi-Ventricular repair.

The Fontan would have kept Carson as a single ventricle anatomy. This is great for kids who only have one ventricle to work with. Its a surgery that essentially re-plumbs the heart. It makes only oxygen rich blood go into the heart and out to the body. The issue is that the left side of the heart is meant for oxygen rich blood and the right side is made for non-oxygenated blood. Oxygen rich blood and non-oxygenated blood have very different pressures and over time the pressures on the heart can cause issues.

The Bi-ventricular repair basically reconstructs his heart to restore normal circulation, meaning closer to normal pressures in the heart and the oxygen rich blood is on the left side and oxygen poor blood is on the right side.

I chose to go with the Bi-Vent because it restored normal circulation to Carson’s body and organs. There is less risk of problems in his future but more risk up front. They said that it was a 10% chance of fatality vs 1% with the Fontan. We can talk about what its like to make these hard decisions later.

So we got on a plane, went to Boston and Carson had his Bi-vent repair done on Oct 15, 2013. They told us it would be a three month recovery time but my amazing son was discharged just 11 days after surgery! We came home November 1st and things were GREAT! His energy level was back, he was able to keep up with kids his age and I was so impressed.

Slowly over time Carson started getting tired, more out of breath, and sometimes complaining that his heart hurts. So over the past 2 years he has been followed closely but his cardiologist here in California. He has some tissue that is creating a partial blockage of the blood going out of his aorta and to rest of his body. It will have to be surgically repaired.

He has an appointment next week and I will once again send his records to Boston to get their opinion. I know they will agree that surgery will be necessary so I will ask them to schedule a date.

Boston did his last surgery, and they are the best of the best in pediatric care in general, but also in pediatric cardiology. I will do whatever I have to do to make sure he gets in the hand of the surgeons I trust. How I will hand him over again is beyond me.

Today he has his good days, and his bad days. Quality of life matters and surgery is needed. This heart mom stuff is hard. I plan on updating this blog and being very real and raw. I need an outlet. I feel like I have just been surviving through this, but not living. Some of this is a blur. Its felt as though the hard days were like years, never ending but here I am, 5 years into this journey, still surviving, still fighting, still hopeful, and still scared.

Please help me honor all the babies, children, and adults affected by CHD, the warriors and the angels by wearing red TODAY and every Friday in February.

 

 

Alison

Carson became a big brother on August 30th, 2013 at 4:25 pm when Alison was born at home.

In January 2013 we found out I was pregnant. We were excited and nervous. I sought out care of an OBGYN who was supportive of vaginal birth after c-section (VBAC). I never knew how hard it would be or where that journey would take me.

Since Carson was diagnosed in utero his birth was very planned and very controlled. They induced me at 39 weeks and a few days but the induction failed. I did not dilate, I did not efface, I was not ready at all but he needed to be born so we made the best decision for him and went forth with a cesarean section, not knowing that that would dictate how my future births would be.

My c-section was scary. It was cold. I was shaking. I felt something be pumped into my body and then I felt myself fading away. I could hear my heart beat starting to get slower and slower on the machine. The next thing I knew I heard one OB yell “we need to get this baby out and NOW.” Within seconds I heard Carson’s cry, it was a beautiful sound but a scary birth.

This time I wanted to push my baby out, this time I wanted to feel every ounce of labor, this time I wanted to hold my baby the second he or she was born. This time I wanted to be in control.

I found a OB who I though was supportive of VBAC’s until I did the research. I found out that he delivered at a hospital that just a few years ago had the third HIGHEST c-section rate in California. I ran, far away from that doctor. I went to a local ICAN meeting [a group to support women who have had c-sections] and I got amazing referrals. I joined some VBAC groups on Facebook and I cried. This is my body, my baby, and my birth yet doctors and hospitals were dictating to me what I could and could not do.

I finally found a clinic in Los Angeles that supports VBACs and started being seen there. I went in with an open mind, but was quickly disgusted when there was another persons blood on the exam room floor. I continued my care there though, I felt I had no other choice, until the day I got a call from the health dept saying that I was exposed to TB and so was Carson. That was it for me. I never stepped foot back into that place. I was lost and my last option was to hire a homebirth midwife. I didnt think I could do it. I didnt know that I would ever be one of ‘those ladies’ who has their baby at home, but I wanted the right to push my baby out so much that I was willing to do anything. And so I did. I hired a midwife and started planning a homebirth.

On Wednesday, August 28th there was a fundraiser being put on to support Carson. It was one I was super excited about and didn’t want to have to miss although I was sick of being so pregnant. That week I would rub my belly and tell Alison that she could come any time after Wednesday but please not before.

We made it to Wednesday and I got to enjoy the show. We stayed after and talk to the cast, talked to some of the audience, and helped clean up. We got in the car and drove home. We hit the second block away from where the performance was held and my first contraction started. I wasnt sure if it was real or not since I had had a few practice ones here and there. I knew something was going on when we got home because I had three more throughout the drive.

My midwife told me that when labor started I could have a glass of wine or a beer to help me relax and get as much rest as possible. I love an ice cold beer with dinner on a cold day so I was really looking forward to it but didnt want to have anything until I knew it was the real deal. I went to bed around midnight and tried to sleep but had contractions all night long.

My contractions were time-able at this point but I didnt time them because they weren’t super painful yet. All day long my mom and other family were asking me when I was going to call my midwife to come over, but I didnt because somehow I knew it wasnt time yet. These annoying contractions lasted throughout all of Thursday when at about 3:00pm they just went away. I was annoyed so I did what any VERY pregnant woman would do. I went and got my nails and toes done.

My contractions came back at 1:00am on Friday, August 30th and they came back more intense than ever. I tried to rest. My midwifes voice was in the back of my head telling me that I will need all the energy I can get. I tried to rest until I couldnt try anymore, it was useless. By 3am my contractions were coming 4-5 minutes apart and I knew this was it, and I was starting to have to vocalize through them. I texted my midwife to let her know things were starting and I woke up Nick.

Nick started a bath for me and got me a glass of wine. The water was amazing, the wine…not so much but I drank it anyway. It did the trick and I slept in between contractions from 4-6am. I woke up at 6 and started timing contractions again. Now they were coming 3 minutes apart. I took a screen shot of my contraction timer and sent it to my midwife we said she would be on her way.

I walked out of my bedroom to find my kitchen floor was flooded!! Sometime between 3 and 6 a hose burst. I called my mom to tell her it was time (we had planned for her to keep Carson while I was in labor). She came over and helped Nick clean up the water while I sat on the yoga ball.

At around 7 my water broke. It felt like I just peed myself at first then it came in a big gush. We had our birth supplies ready but I was having a hard time remembering what a table cloth was called. HAHA. I was telling Nick “GET THE THING, GET THE THING, Hurry!! The water proof thing! You know that goes on a table.” He got it and I jumped on it just in time for the big gush. Thankfully my pants had caught most of the water before that.

I looked down at the table cloth and my heart sank. My water wasnt clear, it was cloudy and yellow. I knew there was miconium in the water. I had Nick text my midwife who was just a few minutes away and leave the table cloth on the floor so that she could see the water for herself. I went in and got in the shower to clean myself off.

My midwife and her assistant got here while I was in the shower and quickly set up. When I got out of the shower she listened to Alison’s heart rate and discovered it was high. She was a little concerned and just told me she would be listening more often than she normally does and if anything were super concerning we would go to the hospital. She checked me and found that I was at a 4. I thought that it was decent progress and went back into the living room and got on my hands and knees to help make sure Alison was in a good position.

I found myself looking at the clock a lot so I had them take it off the wall. This is when time becomes a blur. I know it wasnt until 5 hours later that my midwife checked me again. I was so discouraged to find I was only a 5 but I knew that if I was going to do this I needed to stay positive. Instead of thinking I am only at 5 I started telling myself You’re half way there!

They brought in the birth tub. Oh what a beautiful thing!! I got in and it instantly took the intensity of the contractions away. They were still super intense but not as bad as they were. I have no idea how long I was in the tub but I think it was a couple hours. Then my midwife said I should probably get out. I thought she was crazy, but I did it anyway. She checked me before I got out and said I was a 7-8. I was excited but knew 8-10 was transition and things would start to get more intense.

I got out of the tub and went to sit on the toilet. My contractions got so strong. I was loosing focus. For the first time I was thinking that I could not do this. I wanted an epidural. I screamed through I few contractions and started begging to be able to get back in the water. While in the water I would get on my hands and knees and push back with every contraction blowing into the water as I vocalized through them. I had a pattern, but on the toilet I didnt. My midwife told me two more contractions, so that is what I did. Thankfully I was also able to have a bowel movement as well so I didnt have one while pushing.

I got through the 2 contractions I agreed to but then while trying to get up I had another, and one more after that. I had 7 contractions on the toilet before I basically ran in between contractions back into the tub.

I couldnt take it anymore. I asked to be taken to the hospital. My midwife said fine let me check you to see how far along you are and we can go. She checked. She said she felt no cervix, I was shocked. I asked her what she meant and she said I was complete. I asked then when do I get to start pushing? She said when you feel the urge. That is when Nick got into the water with me. He got behind me and rubbed my back as best as he could. I felt so empowered with him behind me. All my doubt had gone away and I knew that I could do this, that WE could do this.

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So I waited, and I felt a little something but I wasnt sure what it was. I pushed just a little at the end of that contraction and it felt amazing. I never got this overwhelming urge to push but I knew when my body was ready. I pushed tiny pushed for a few contractions. I was so nervous. I didnt know what to expect and wanted to bring her down slowly. My midwife explained the ring of fire feeling and I waited to feel it. The next few contractions I pushed and I pushed hard. I pushed her head and shoulders out in one contraction and she was half way out, under water. She turned her head, opened her eyes and looked at me. She looked like a mermaid with her hair waving in the water and her beautiful big eyes. With the final contraction I pushed one last time and pulled her onto my chest. I had done it and everything went perfectly. I couldnt believe it.

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Alison was born, at home, with no pain killers, no IV’s, no hospital bracelets or alarms on her ankle.

She stayed in the tub on my chest for about 10 minutes when I delivered the placenta. She was so beautiful, she opened eyes and just stared at us and immediately started sucking her hand. I took my bra off and she latched on right away.

We moved from the tub to my room with the cord still attached to the placenta. Nick got to cut her cord and after maybe an hour or so my midwifes did her newborn check. She got a clean bill of health and so did I. Alison weighed 8lbs9oz and was 20.5 inches long. I tore a tiny bit which my midwife said she could stitch or just leave alone. We decided to leave it alone.

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Carson was so excited about his little sister. He was pointing at her and saying “baby”!

A little over a week postpartum I feel great and Alison is doing great.

Let’s Catch Up

On Wednesday August 28th No Such Thing put on a show called Will Sing for Change.

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[This was a second annual show that they put on to give back to the community. This year they chose Carson!]

It was AMAZING!!! The room was packed!! It took everything in me to not be a ball of tears from the beginning.

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These people are so talented! The show was amazing, some of the songs were super heartfelt and some were funny, it was a perfect balance and we felt so grateful to be there. 

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I held back my tears till the middle when the 50/50 raffle was drawn. The woman who won decided to give the cash to Carson. She got up there and said “we all keep talking about Boston but Carson is a kid, take him to Toys R Us and let him buy whatever he wants.” So we did. We took him, well his daddy took him and he got a really cool tool bench and he still has money left over.

Another highlight of our night was meeting Kevin. Kevin is from our area and is 30 years old living with half a heart. He had no idea about the show until one of the cast members moms went into his flower shop and told him about it and who it was benefiting. He came to meet us. It was so amazing to have a man stand in front of me and tell me about his normal life, his life where his kindergarten friends “thought he was going to die” because he had his last surgery at 5 years old. Kevin has HLHS (hypo-plastic left heart syndrome) its literally living with half of a heart. HLHS kids have a series of three surgeries. [The same two that Carson has had, the Norwood, and Glenn and then the final one is called the Fontan. Carson wont be getting the Fontan but instead will be getting the Bi-Vent repair since Carson has a full heart.] Kevin is an inspiration and I am so glad we got to meet him.

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All week before the show I would rub my belly and tell Alison that she was not allowed to come until after the show on Wednesday. I was so excited I didnt want to have to miss it. Alison listened to me and on the way home from the show I stated having my first contractions. They went through the night and lasted into Thursday when at 3:00pm they just stopped…

But they started again at 1:00am Friday morning and on August 30th at 4:25pm Carson became a big brother!

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Alison was born at home weighing 8lbs9oz and was 20.5 inches long.

[I will post a full birth story]

We had a house full of visitors that weekend but went right back to fundraising the next weekend. We held a rummage sale in the parking lot of a doctors office on Sunday and had two of the most awesome sign holders!

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The fundraising didnt go as well as we had hoped that day but every dollar adds up and we are grateful for all the help.

We have a few other fundraisers lined up. 

We still have the cake raffle going on, its only $5 per ticket and you can win a custom cake worth up to $200 dollars. 

We also have a couple yoga classes that will be based on donations all going to Carson and we hope to do one final rummage sale this weekend in the Tuesday Morning parking lot again.

We also still have the gofundme.com/carsonsheartjourney website going where donations can be made. 

I also wanted to say thank you to everyone who has donated. We have seen the kindness in people through and through and we are so so so grateful!

Our flights are booked. We leave on September 30th.

 

Strangers Becoming Friends

In case you missed it….

http://www.sgvtribune.com/20130822/glendora-family-raising-funds-for-19-month-olds-third-heart-surgery

Carson’s story was printed in the San Gabriel Tribune today and was posted online as well.

We never want to be a charity case, or for people to feel sorry for us. We GET to be Carson’s parents, and we GET to walk though this journey with him. He has taught us so much and changed our lives in ways we could have never imagined and now he gets to touch even more lives. How awesome is that?!?!

Carson’s story is reaching people, complete strangers who just want to do anything to help. That . Is.Incredible.

Today I was contacted by Jacquie who is heavily involved in an organization called No Such Thing Theatre Arts. They put on productions and raise money to donate back to their community. No Such Thing has actually put together a performance in faith that they would find the perfect place to donate to. With only days before their performance the article in the news paper landed in their hands and they knew they wanted to help.

They are putting on a production called “Will Sing for Change.” It will be held, this Wednesday, August 28, 2013 at 7:30 PM at Covina Bowl in the Pyramid Room, 1060 San Bernadino Rd. in Covina!! Tickets are only $8 at the door and I would love to see as many people there as possible!!!!!!!! Will Sing For Change

This is the flyer! Please feel free to copy it, share it, print it, and post it on every car you see!! Ok, I hate my car being flyer-ed too but it would seriously be awesome to pack that room to capacity.

Just a last minute reminder! We are having the car/motocycle wash tomorrow, Saturday August 24 at Lucky 7 Motor Sports in Rancho Cucamongo starting at 9:30am and going till we are done! THEN there will be a fundraiser at The Pizza Factory, also in Rancho Cucamonga, starting at 5:30pm. The owner has graciously offered to donate 20% of all profits to Carson.

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We will continue the fundraiser on Sunday, August 25 at Lucky 7 Motorsports with a Rummage Sale.

Now that that is done, is it too much to say thank you in every blog? I dont think I could ever thank everyone enough!! Thank you all who are helping us through this. From the bottom of my heart and the depth of my soul. THANK YOU!! You are all incredible!!

Fundraising!!!

Fundraising so far has been going amazingly well!!

Here is a calender of events we have going on.

ON GOING!!!

  • From now till Sept 15th we will be selling raffle tickets for $5 each for a chance to win a cake made by Gina, the same person who made Carsons amazing 1st Birthday Dr. Suess Cake. Image
  • We will continue to do direct donations through http://www.gofundme.com/carsonsheartjourney
  • A mommy friend Sarah is hosting an online my thirty one fundraiser for Carson! She is graciously going to donate all of her profit made from the event. The website has been set up and all purchases have to be made on or before August 30th. Check it out here https://www.mythirtyone.com/shop/eventhome.aspx?eventId=E3604359&from=MYEVENTS there is a ton of cute stuff available!!

Dates for set Fundraisers are as follows:

Saturday, August 24: 

  • We are holding a car/bike wash at Lucky 7 Motorsports, 8810 Archibald St. Rancho Cucamonga. The car/bike wash will start at 9:30 but has no set time to end. We will need help washing vehicles, and we would also love any and all donations of towels.
  • The car/bike wash will be followed by a pizza fundraiser at the Pizza Factory, 12273 Highland Ave., Rancho Cucamonga starting at 5:30. The owner has graciously offered to donate 20% of all sales to Carson!!

Sunday, August 25: 

  • We will continue to wash cars and bikes at Lucky 7 Motorsports and we will have a rummage sale set up. If anyone wants to clean out their closets, garages, houses etc and donate items to be sold we can take donations all week at my house. Please contact me via facebook.com/rheanna2287 or rheanna.white@yahoo.com to make arrangements.

Thursday, August 29: 

  • Fundraiser at Clubhouse 66 in Glendora. I will have flyers available on facebook. Clubhouse 66 will donate a portion of their profits of all checks (receipts) that have a flyer attached to them. I will update with times as soon as possible.

Saturday, August 31:

  • We are still in the works of setting something up. If anyone has any ideas, or would like to host something please let us know :o).

There are several other fundraisers being set up so I will update this post as more details are available!

Amazing

First

Another AMAZING fundraiser!

We had another carwash, this time at Clubhouse 66 in Glendora.

(Can I just take a second to say how amazing the owner and staff are at Clubhouse 66? Seriously, we gave them a release form so that if anything happened they arent responsible and the owner signed it then pulled money out of his pocket to donate, along with a few other employees. One whom just handed us the keys to his car along with money and asked us to just park it when we were done. These people are amazing, I highly recommended Clubhouse 66 before but now more than ever I will be so glad to spend my money there.)

Once again people showed their kindness and generosity, some just handing out donations without having their car washed, and others who I got to have amazing conversations with while they waited for their cars we be washed. 

Once again, my gratitude cannot be expressed!

Thank you to Clubhouse 66, everyone who came and helped set up and wash cars, everyone who got their cars wash, and even those who didnt. Thank you to everyone for your generosity!! 

Second

Great things are happening! Ok, well they have been!

I’ll be honest, I have been super stressed out. Having to plan to move across the country for a huge surgery is not fun or easy. I havent worked in almost two years and money is not something we have extra of. Add to that the stress of the surgery and having a baby on the way I seriously dont know how I still have any hair. However, the way that people have pulled together to help us has been incredible!

We have a gofundme website set up. We now have over $500 that has been donated and to be honest I dont even know who half of the people are. I think the theme of this post is my lack of ability to express my gratitude. I dont know how to say thank you enough to everyone who has donated! More and more everyday Boston is getting closer, and I am realizing more and more every day that it will be possible, and we will be ok. Also, a huge thank you to everyone who is sharing Carson’s story!! You are all so so so incredible to me.