Tuesday, February 23, 2010

say what?!

Last night for family night we talked about showing each other love, kindness & being a happy family. I told the kids that this week I wanted each of them to go out of their way daily to do something nice for their siblings. I also told them that if they did or said something not nice, then they needed to pay the sibling they slighted 2 compliments (I got this idea from one of the girls I teach at church). Later in the evening Josh playfully kicked Abby. She said to him, "Joshie...you gotta say 2 nice things to me for that!"
He thought about it for a second, got a big smile on his face & said, "Okay...I like to toot. And I like to kick you!"
This is going to be an interesting week!

Thursday, February 18, 2010

a big scare

While this is Joshie's blog all about his heart, Sammy has earned some air time on the heart blog.  You see Sammy turned 7 months this week, but it was overshadowed by some serious craziness.  On Monday morning Sam woke up feeling sick. I mean really sick...high fever, vomiting, sleepiness, only wanting to be held by me - even while sleeping, did I mention the horrible cough??? It was pretty bad. Monday was a holiday so our doctor's office was closed.  It was bad enough that I decided to take him into the urgent care clinic. At the clinic he was seen by a resident who didn't feel good about sending us home until the doctor took a second look at him.  Immediately the doctor said "This is obviously an RSV baby...check his sats." His sats were 96 - not alarming, but upon listening to his lungs she decided that he needed a chest x-ray.  This is where the story takes a turn for the worse.  After the chest x-ray results came in, both the doctor and the resident walked in with looks of pity.  They looked at me and said "Well, the good news is the lungs look clear...but it appears his heart is enlarged."
Say what???? They said that it may just be the position Sam was sitting when they took the x-ray.  I didn't panic, but asked if it was realistic to think it was just his position, or if the reality is that his heart is enlarged.  The response was "anything is possible."  The doctor said she called the pediatric radiologist to take a look at the x-ray. She told me that she'd call me later in the evening & let me know what he thought.
Then they swabbed Sam's nose to test for RSV because we were there to figure out what was currently the matter.  After the swab we were on our way home.
As soon as I called Jon I started crying because saying the words "Sam has an enlarged heart" made it seem terrifyingly real.  I called my family & Molly did her best to reassure me it'd be ok. Poor Molly always seems field the phone calls when I'm at my lowest point (she must love that). She convinced me to call Dr. Rivera. I called him, he had just gotten home from skiing, but was happy to look into it (he had access to the x-ray from home), and then call me back later.  In the mean time the doctor who saw Sam earlier called to check on us. She said that the radiologist took a look at the x-ray and felt that his heart was indeed enlarged. Moments later Dr. Rivera called me back & disagreed. He told me to bring Sam in first thing the next morning for an echo just to be sure. 
The next morning Dr. Rivera met us at his office, as soon as the doors opened - on his day off no less.   As he watched the echo he knew right away that the heart wasn't enlarged - phew!
He & the echo tech looked around a bit more at the heart. Then Dr. Rivera told me that Sam actually has a hole in his heart, but it's relatively small. Not a huge scare, but will require follow up echos.  It is an ASD- a hole between the upper two chambers.  Never in a million years did I expect to go through any of this with Sam when I brought him into urgent care on Monday. It was quite the roller coaster. Have I mentioned how much I hate roller coasters? 
Well you'd think that was enough for Sam to go through...no, no there's more. They confirmed he has RSV, which has been a horrible experience, fever, cough, miserable. AND he has a stomach virus, which has caused diarrhea & non-stop vomit (today is day 4). AND he has an ear infection, pain, sadness, more fever.

Okay, lets go over this again....just to be sure you got all of that:
1. RSV
2. Stomach virus
3. Ear infection
4. A hole in the heart (talk about adding insult to injury)

You could say this has been a long week. And it's been an awfully long weekend for Abby who hasn't been to school all week because she's also sick.  So if you happen to see us any time soon....run the other way!  Because I wouldn't wish this upon anyone.
But on the bright side, the weather is beautiful! I'm clinging to that right now, clinging.

Sunday, February 14, 2010

Happy Heart Day!!! {CHD week}


As I look back on the stories I shared this week, I realize that I did a lot of sharing about the hospital aspect of having a CHD. I think that's because those are the times when it really feels like Joshua has a serious heart defect. The truth is, day to day our lives are very normal. I give Josh his daily medication, change his clothes and see his scar, yet I tend to forget about the disease he lives with. He leads a very full, happy life. I hear time and time again "I had no idea Joshua had anything wrong with him!" This is like music to my ears, because if people see no signs of his CHD, then he must be doing pretty well, right?
I often say, if I only knew back at the start that Joshua would live such a normal life, I would have saved myself tremendous stress, and worry...and probably a lot of tears.  But the stress,worry & tears are an inevitable part of the process.  The fact is, his journey is far from over, but I find joy in knowing that he's been grated a normal life, to this point.  We truly relish this time in our lives.  
As we say farewell to another Congenital Heart Defect awareness week, I urge you to donate blood, become an organ donor, spread the word about the prevalance of CHD's, donate to CHD related research, do whatever it is you can.  Thank you for reading my blog this week. It's my way of letting people know what it's like having a child with a CHD (for our family anyway), and therefore spreading the word.... and that's what it's all about! 
Happy Valentine's day!

Saturday, February 13, 2010

Brothers & sisters {CHD week}

By far the best days of joshua's hospitalizations were these:

Joshua is a lucky boy...a boy who has 2 big sisters! These girls love him to pieces & he loves them right back.
When Joshua had his surgeries the girls were too young to really understand the extent of his illness. It was fine all the same because there was no need for them to worry. But regardless I think seeing the brother they love in this situation has taught them true compassion.  They are very sensitive little girls and I think it's due to the fact that they have experienced this journey right along side Joshua.  Their visits lifted his spirits like no one else could have. Now if only I can find a way to teach them to appreciate each other on a daily basis...

Friday, February 12, 2010

Support {CHD week}

I am often asked "How do you do it?" in regard to parenting a child with a CHD.  The truth is I wouldn't be able to without my vast support system.
From the time we learned about Joshua's condition countless people went out of their way to help us in any way they could. 

*photos: Right- my mom & Joshua
Below- my sister Carrie with little Callie and Josh

Our family cancelled vacations, postponed work, drove to and from S.F. time after time & provided 12 weeks of childcare for Abby & Callie.  They helped us with every aspect of this journey. They sat with us through the long hours of surgery, they took care of our home while we were away, they washed our laundry & then delivered it to us, drove to S.F. in a moments notice if I mentioned missing my girls, sat with Joshua so we could take the girls out - away from the hospital. The list goes on and on. They were amazing! They continue to be amazing! 

Before delivering Joshua my friend Lindsay, whose daughter has Shones, introduced me to the support group Hearts of Hope. The support group has been such a blessing. This group of heart moms has answered so many questions, calmed so many fears, and shared countless tears. They are an invaluable resource & I've loved being a member of this special community.  A community where I've made dear, lifelong friends.

Another source of support, I've met through this blog. I have made numerous online connections with mother's who know exactly what it's like to walk in my shoes. It's an amazing bond us "heart mom's" share.  While it's not a club anyone wants to join, we couldn't do it without eachother. It has been great being part of this community.

Speaking of community - we are blessed to live in a community that has lovingly stepped forward & provided us with service, monetary donations, dinners, etc. We are endlessly grateful to those who have taken an interest in our family over the years, for the positive thoughts, the fasting & the prayers.

Lastly, and most importantly we couldn't have done any of this with out our Heavenly Father, who has blessed us with selfless families, friends & community.  We  have been lifted and strengthened during our lowest moments and it is His love that has allowed us peace during these times.

So today I want to be sure and thank you all so much for everything you've  done for us, because without you, our lives wouldn't be the same. 

*photo- My sister Molly with Josh

Thursday, February 11, 2010

2 years ago today... {CHD week}

Joshua had his Glenn, as well as his tricuspid valve repaired. How grateful we are today that we're on this side of that hurdle.  How grateful we are to the ultrasound tech who first noticed Joshua's sick heart. How grateful we are that he was born in a top-notch hospital that was fully prepared and anticipating his arrival.  How grateful we are that he's lived 2 very full, happy years of life!

Wednesday, February 10, 2010

Hypoplastic Left Heart Syndrome - HLHS {CHD week}

(Joshua - 4 months pre-Glenn)
While there are many congenital heart defects, Joshua unfortunately has one of the most severe, if not the most severe. He has hypoplastic left heart syndrome, or HLHS. I still remember when the doctor who diagnosed him uttered those words & thinking to myself, "huh? Was that English?" Then a moment later I realized that incredibly long name would become a regular in our vocabulary. I don't often think back to the day when we found out because it was really tough. The short version goes something like this; I got a phone call from genetics the morning after our 20 week ultrasound. The woman wanted us to come back in immediately for more testing because it "appeared that a portion of the baby's heart looked smaller than the other side."
HLHS is as simple as that (if that is simple). Joshua's left heart is severely underdeveloped. Therefore, his heart required surgery at birth in order to support life.  Other options included transplant, pallative care and termination. We chose to have Joshua undergo the Norwood procedure, as we felt that it offered the best shot at life. The Norwood procedure consists of 3 stage surgical intervention. The Norwood at birth, the Glenn at a few months old (Joshua was 4 months) and the Fontan during the toddler years (or there about). The result of the procedure allows the heart to function with a single ventricle; the right ventricle in Joshua's case. It's actually pretty fascinating the way his body functions right now. The blood flows passively to the lungs from his upper body & then goes to the heart where the right ventricle then pumps the oxygenated blood to the body. After he has his Fontan the blood flow from his lower body will also be directed to the lungs & then to the heart, allowing him to function with higher O2 levels than his current state, which is at around 80-85%. If you know Joshua, you may have noticed that he looks a little bit blue. After he has his Fontan his O2 levels should be in the high 90's, and hopefully his lips will be pinker!

We have mixed emotions about sending our little guy back into surgery. While we know that it's for the best, it's awfully hard to imagine going through recovery again, this time with a boy who can very clearly communicate with us. When he was a baby I told myself time & time again that he wouldn't remember all that he had been through. It'll be harder to convince myself of that this time.
When he had his previous 2 surgeries he went into each of them in poor health. He had tough recoveries that left us in the hospital for 6 weeks each time. When he has his Fontan, I assume he will be in good health. He's enjoyed good health for nearly 2 years & I have faith that he will remain strong heading into the Fontan, which should theoretically make for a faster recovery.
Until recent years, there has been no hope for children born with this disease. We are so very fortunate that Joshua was born at a time where success rates are improved and real hope exists. With a few survivors now in their 20's, there isn't enough data to conclusively say how long Joshua's heart will provide him life. His heart will eventually fail him and he will need a heart transplant. We have no idea when that will be. It could be next year, it could be when he's 20, or 30, we simply don't know.
Having a child with HLHS has taught us many lessons. Lessons that I may not have learned otherwise. I try to see the good in the situation and truthfully while I wish I could take away the pain & suffering, I wouldn't change Joshua. He is a remarkable boy, because of what he's been through. He has the ability to overcome obstacles that others couldn't, and he doesn't even notice them. If I possessed a fraction of his determination, I'm pretty sure I could walk on water.  Obviously, that miracle isn't happening any time soon, but it's okay, because he is our miracle.

Tuesday, February 09, 2010

Saying 'thanks' {CHD week}

Today we spent the afternoon delivering gift baskets, on behalf of our support group, Hearts of Hope.

(Joshua aka Mr. Aloof - refused to look at the camera & smile)

It is so much fun to be apart of this type of event - an event that took the effort and coordination of many people.  As a mother, whose son is alive in large part to doctors & nurses, you feel as if no 'thank you' is ever enough. But you do what you can & in this case I think the Kaiser staff lucked out (assuming they have a sweet tooth...and c'mon who doesn't have a sweet tooth?)!!! 

(If you ever want to be the center of attention, round up some kids & hand out gift baskets...it really causes a stir!)
(still aloof - even though he was super happy to see Dr. Rivera) 
In case I haven't made it clear to all those who play a part in caring for kids with CHD's....
Thank you for all you do!

Monday, February 08, 2010

We owe it to you! {CHD week}

(Me with Dr. Azakie after learning Joshua made it through his first OH surgery)

Today I want to highlight some of the amazing people who've touched our lives on our CHD journey.  The first person is Dr. Azakie, Joshua's cardio-thoracic surgeon. Dr. Azakie first operated on Joshua's tiny heart when he was only 3 days old. His amazing skill has granted Joshua a very normal life. He operated on Josh when he needed his diaphragm repaired due to paralysis. He operated on his heart again at 4 months old & once more to place a pacemaker at 5 months.   Dr. Azakie will preform Joshua's third open-heart (the Fontan - the final O.H. of the Norwood procedure) in the near future. We have quite the history with him & are tremendously blessed to have Josh in his care.

Next, I'd like to tell you about the nurses.  During our hospital stays Joshua always seemed to be quite popular among the nurses. They all loved him. Whether or not he was their patient, many of them would sneak in a quick visit or two during their shift. Looking back, I think they made every patient feel like they were their favorite. That group of nurses in the PCICU are amazing!
One in particular whom we all grew very close to is Janet. She was his nurse the absolute hardest night of my life. It was the night before Joshua had his first open-heart surgery, he was only two days old at this point and my heart was broken. I slept (tried to anyway) in his room that night & watched as his tiny body lay there surrounded by doctors who were trying desperately to get an IV in him.  They tried for hours on end, while his tiny body squirmed and fought them in pain. I sat there crying quietly.  Janet stood there with him, covering his eyes from the bright lights, stroking his forehead & humming a lullaby (all the while assisting the dr's - she did this for hours).  As long as I live I will never forget that night. I'll never forget the pain I felt, but also, I'll never forget the comfort she was to us both. 

Finally, let me tell you about Dr Rivera, Joshua's cardiologist.  From the very start Dr. Rivera has been amazing. He has an awesome outlook on Joshua & his condition. An outlook that, at times, allows us to forget that there's anything wrong with Josh's heart at all. He is ever encouraging & wouldn't think of limiting Joshua in anyway. I appreciate this so much, because I like to let Joshua try whatever he wants to (within reason:), and I can't imagine what life would be like if I constantly monitored him & restricted his play. Right now, Joshua is doing quite well & I very much appreciate that Dr. Rivera has given us the green-light on living life to the fullest.   We are aware that this may not always be the case, but we are loving it while it lasts.

We are so blessed to live in a place where we have such an amazing team of experts readily available.  Thank you - to all of the doctors, nurses and support staff who have made this journey enjoyable and worthwhile!

Sunday, February 07, 2010

What a week! {CHD week}

(Glenn procedure, 4 months old - 2/12/2008 one day post-op)

This week is Congenital Heart Defect Awareness  week, and I intend to spread awareness. After all, that's what this blog is all about- sharing my broken-hearted baby's story.  Never in a million years did I expect this week would have any significance in my life....that is, until this day.

You never know what life has in store, but as we learned, CHD are much more common than you'd think. Here are a few quick facts about CHD's:
  • CHD's are the number one birth defect and the number one cause of death from birth defects
  • one out of a hundred babies are born each year with a CHD
  • nearly twice as many children die from CHD's in the U.S. each year as die from all forms of childhood cancers combined
Why spread awareness???

More research funding, more heart donors, more early detection and intervention, education and support. Pretty simple.  

Stay tuned this week for more about CHD's...

Monday, February 01, 2010