What Can You Do?

Today is Valentine's Day. It is also the last day of Congenital Heart Defect Awareness Week. I've shared with you several CHD facts, as well as the experiences of several other heart families, over the past week. I've asked for your help to Raise awareness. To spread hope. But what does that really mean? What can YOU do to help raise CHD awareness and help us find better ways of treating and possibly even preventing CHDs?

SO glad you asked! Let me tell you!

Give blood.
This is such a quick and easy thing to do! And anyone can do it! Chase needed a blood transfusion after his Norwood procedure when he was only a week old. During both of his surgeries, he had to be put on cardiopulmonary bypass (often referred to as a heart–lung machine), a technique that temporarily takes over the function of the heart and lungs during surgery, maintaining the circulation of blood and the oxygen content of the body. The machine requires donor blood to prime the machine. So by giving blood, you are doing your part to help save lives.


Donate to the Children's Heart Foundation.

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

As the country’s leading organization solely committed to CHD research funding, The Children’s Heart Foundation dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD. CHF has funded over $4.1 million of vital, life-saving CHD research since its inception, which includes approximately $400,000 in 2010.

Click here to make a donation in Chase's honor, or in the honor or memory of the sweet CHD warrior/angel close to your heart!

Source

Become an Organ Donor.
110,371 people are waiting for an organ. 18 people will die each day waiting for an organ. 1 organ donor can save up to 8 lives. Those facts and figures alone should make your mind up for you!

Donate the gift of life.

Click here to sign up today!


Support CHD Families.
Your support is crucial to CHD families. While you cannot fully understand the path our lives have taken to care for a child with a special heart, you are our family. Our friends. Our shoulders to lean on. Our voices to lift in prayer. You provide hot meals and send cards of encouragement. You sit with us at the hospital by our child's bedside for countless hours. You offer financial support and help with caring for our heart healthy children. You are the ears we need to listen, the hands we need to hold. You are our strength as we make our way through our darkest and scariest moments. We are forever indebted to those of you who have been there for us when we needed you most, and pray that you continue to do so in the months and years ahead.

Thank you for your continued support, love and prayers.


Raise Awareness.
Today's the last day of Congenital Heart Defect Awareness Week. Tweet about CHD Awareness. Change your Facebook status to promote CHD Awareness. Feel free to link to this post so your friends, family and followers can learn how to raise awareness.


Read this.
If you want to know why heart moms are so fired up about CHD awareness, read this post. Amy's words may as well be my words. She expresses the urgency of the need to fund research, prevent CHDs and develop new ways of treating existing CHDs that I believe everyone--heart family or not--can understand and identify with. Please take a moment to read her post.


Raise awareness. Spread hope.

Feel the Pain

My sweet little innocent Chase has a problem. A BIG problem. He has a temper like you wouldn't believe! I know it's hard to believe, right? Ya, I figured you'd think that. So I thought I'd provide proof.

The other night, he was fussy and crying because he was hungry and mommy just wasn't getting dinner put together fast enough. So I offered him a snack. It wasn't a cookie. It wasn't a cereal bar. It wasn't yogurt or applesauce. It was a wagon wheel (you Gerber fans with little ones will know what I'm talking about).

Apparently, Chase wasn't in the mood for a wagon wheel. I'm pretty sure he would've been happy with a cookie. But NOT a wagon wheel. I attempted to give it to him and he swatted it away, flinging it across the play area. I went back to the kitchen, figuring I'd attempt a "tough love" approach and let him cry for a few. I was working on dinner when I heard, Thud!

I wondered to myself, "What the heck was that?"

Then I heard it again.

Thud!

Curious as to the source of the noise, knowing I had a pretty good idea of what it was (but was hoping I was wrong), I wondered into the play area to see what was going on. I decided to turn on my iPhone video camera to obtain physical evidence. By the time I went in there, he had moved away from the flat part of the wall. The wall where he had been -- yes -- banging his head against it. He was so hungry yet so displeased with his snack option that he'd taken to banging his head against the wall.

As I mentioned, he had scooted away from the flat part of the wall when I came in and turned my camera on. This is what then transpired:



Yes, you saw that right. He didn't want the juice I offered, so he attempted to fling it as far away from him as he could. If you watch closely, you'll see at one point he catches a glimpse of the corner of the wall. Then he continues to cry for another moment before BAM! He made the decision to bang his head into the corner of the wall with a great, big "Umph!" Then of course he immediately breaks out in tears again.

I was in total disbelief. I had the camera running and my jaw on the floor. I couldn't believe I had just witnessed that. If it weren't for the video above, I'd swear I saw it wrong. But no. He was mad. VERY mad.

And now he has the bruise and a lovely indentation on his forehead to prove it:

See what I mean? He's got a BAD temper. Thankfully he's usually in his typical sweet, happy mode. It's just when he's hungry or mad or tired that he starts these kinds of antics.

Oh, joy.

Side note: When I showed hubs the video, he laughed his face off. Seriously. Over and over again. He had to grab an inhaler he was laughing so much. At his own son, hurting himself. Funny stuff, apparently... ;)

CHD Awareness Week: Bodie

Today's post is from Amy, heart mama to sweet little Bodie (a.k.a. "Chase's little brother"). Bodie is a living testament to the power of God's healing touch! He's been through quite a journey, and it's such a blessing to see God's plan for his life unfold before our eyes!

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On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7 lb., 13 oz. and 20.5 in.

He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery, spending 3 weeks in the CTICU and an additional 2 weeks on the step-down floor, before finally coming home at 6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds by mouth (they were thickened), to the utter astonishment of all of his doctors and nurses. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. By the next day, he was satting in the 60's and they didn't know why, so they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor stepped in and decided to put Bodie on an external pacemaker. Within an hour, he turned around. A week later, he had his second surgery, to install a permanent pacemaker and take down his sano shunt and give him a BT shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed down to the cticu and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the cticu again in critical condition. He was again intubated and given medical support as they determined that he had an infection in his blood which turned out to be MRSA. He then spent 6 weeks in the hospital on iv antibiotics (5 of those weeks were spent in the cticu as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections).

The day he finished his antibiotics, he was discharged (July 21st)! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home! On September 13, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. Although he came out of surgery intubated and on nitric oxide (to help with his “twitchy” pulmonary beds), by all accounts the surgery was a success. He was extubated the next day and home 4 days later!

Bodie has been home since then and is thriving. He is gaining weight, growing teeth (and hair!) and LOVING life. He is a people person and loves to smile and laugh at anyone who looks in his general direction. He LOVES to eat, army-crawls everywhere, pulls up on anything in sight, cruises on furniture and loves to play with his big sister. He has PT to help him catch up in his gross motor skills, but other than that, is just like any other 1 year old. He is an absolute joy for us!

We know Bodie has at least one more surgery in his future, but we hope to get a reprieve from hospital stays until the Fontan (sometime between 3 and 4 years old), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS.

Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family. We could not be more blessed to have him in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love.

We love our little man and would walk this journey again in a heartbeat!

You can follow Bodie's journey here.

CHD Awareness Week: Brandt

Today's post is from Lindy, mom to fellow HLHS baby and MUSCer, Brandt. I had the opportunity to meet Lindy while she was pregnant with Brandt and show her my sweet Chase in person. Brandt turned out to be quite the Poster Boy for HLHS, sailing through his Norwood and Glenn recoveries, but hit a bump in the road post-Glenn.

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On May 25, 2010, our sweet little Brandt Ethan Markevich arrived... perfect in every visible way. Four months earlier we were shocked to hear at my 20-week ultrasound, “There’s something wrong with his heart.” Those six little words introduced us to the terrifying unknown world of congenital heart defects. With two older heart healthy boys, my husband and I had never heard most of the medical terms that were suddenly being thrown around, and certainly not hypoplastic left heart syndrome.

In short—we quickly learned—only half of our little baby’s heart had formed correctly. The left side was severely undersized. Surgeons would need to operate soon after birth, followed by a second and third open heart surgery as he grew for him to be able to survive. Almost immediately we realized our hope for this precious gift of life rested in the hands of our Great God, Who loved Him more than we could begin to. And we were so thankful to learn of the fantastic pediatric cardiology team at MUSC in Charleston. Our local pediatric cardiologist team has a close-knit partnership with MUSC, and strong success rates due to amazing follow-up between the surgeries.

So we chose the name Brandt, meaning beacon, with confidence that his story could lend hope to others. We did our best to prepare for his arrival, including an extended stay 4 hours from home. Just one month before his due date, a mutual friend at my dentist’s office of all places introduced me to Chase's mom. As soon as she heard our baby had HLHS, she whipped out these gorgeous pictures of Chase at 6 months, and told me how he was thriving after his first two surgeries. I got to meet her and Chase before we headed off to Charleston, and what an inspiration they have been. She put us in touch with CrossBridge Ministries in Charleston. They became our family away from home, even providing housing where we could keep the boys with us during Brandt’s time in the hospital.

At birth, he was quickly whisked away and stabilized. I had hoped to get to hold him briefly, but due to fragile catheters placed in his umbilical cord, we had to wait until the day before his first surgery. Pure love!

He came through his Norwood with flying colors, despite an extremely small aorta, even by HLHS standards. The next two weeks he amazed all of us with strong steady recovery to be discharged 3 weeks after birth! He went from this:

to this:

...one tiny step at a time. Dr. Bradley, the head surgeon, continues his follow-up with each of these special little babies even to the recovery floor. Due to severe reflux that is also common to heart babies, Brandt struggled the first few weeks to gain weight. But once we got him home he took off, thriving with his family.

In some ways those months were very long, filled with many doctor visits, but in many ways they flew by. We treasured our time with him as all too soon it was time to head back for a heart cath and indicators that he was ready for surgery #2, the bi-directional Glenn. As his oxygen saturations had started to drop, we were ready for his heart repair to move to stage #2, but I think parents are never ready to see their little ones in pain again.

December 8th, he once again came through his surgery quickly and with great recovery—we headed home December 12th! But our normally happy baby was a screaming mess for 3 days straight following that trip home. Chest x-rays and an echocardiogram showed the actual surgical repair to be a huge success, but a lump had developed in his chest incision, indicating an infection. His local cardiologist sent us back to MUSC on emergency basis, where Dr. Bradley had to reopen his chest and trim bone and tissue to get rid of a nasty staph infection, official diagnosis mediastinitis—yet another life-threatening condition, but God spared him with the quick treatment.

They used a wound vacuum to suck out the fluids until they were able to reclose the incision. This time was agony for me as he had a terrible reaction to some of the sedation meds they gave him and had to be restrained to keep him from pulling out tubes and wires. He also had 3 weeks of strong antibiotics. His recovery was quite drawn out. We spent his first Christmas at MUSC—one we will never forget. He was exhausted and had lost weight again—but we were thrilled to find the infection had cleared at the end of his antibiotic regimen.

Once he got over the pain of all the extra surgical procedures, our happy little Brandt was back. And he has more energy than ever, and is packing on the pounds. We look forward to getting to spend time with some of his heart friends once his semi-quarantine is over following the flu season. He’s not scheduled for any more surgery until around the age of 3, the Fontan surgery. We continue to pray for healing for him as well as so many of the heart babies we’ve had the privilege to meet.

CHD Awareness Week: Anna Grace

Tina, mom to Anna Grace, shares her journey with us today. Anna Grace was born at MUSC less than 4 weeks after we were discharged to bring Chase home for the first time.

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Jeremiah 29:11 - For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

I was in the PCICU waiting room, overwhelmed and scared, on day-one after my daughter’s open heart surgery and in walks this very normal looking family with a normal looking little baby boy. It was at this moment that I met Chase and his parents for the first time. They were very friendly and shared with me their names and introduced me to their son Chase. They said he had HLHS and that he too had the Norwood surgery. They had been home from Charleston but were back just for the day for a follow-up swallow study. They were such an encouragement to me – seeing this very happy, sweet, normal looking baby boy quietly gave me hope for my daughter – that perhaps I too would be able to take her home with me one day. It was a brief visit, but it was the planting of a seed. It was just what I needed at that exact moment.

With that being said….. I’d like to back up and share with you how we arrived in Charleston at MUSC in the PCICU waiting room to begin with.

It was Friday, August 14, 2009. My husband and I went to the doctor’s office for our routine 20 week ultrasound. We were expecting our second child; we already had a little boy who was 2 years old and completely healthy. Like most expectant parents we were excited to be finding out at that ultrasound if we were going to be having another little boy or if we were going to be having a little girl.

During the routine ultrasound the technician confirmed that we were having a GIRL, but she had some trouble getting pictures of her whole heart. She said that our baby wouldn’t sit still or get in the right position for her to see the heart. She completed the ultrasound and we were then ushered to a regular exam room. The doctor looked at the ultrasound and had us go back into the ultrasound room for another try. Two technicians were now working to get better pictures of our baby’s heart. They never said to us that anything was wrong, but they didn’t have to. Finally they had everything they needed and again ushered us back into an exam room. I looked at my husband and finally voiced it, “Something is wrong”. My husband prayed this simple prayer while we waited for the doctor to return, “Lord, You are sovereign and Your hand is in complete control over all things, even this baby. Let us rest in You no matter how this turns out.” We waited about 5 more minutes and the doctor came back in and said this, “It does not look good, but it is something we can work with. I can not say for sure, but it looks like Hypoplastic Left Heart Syndrome. We are setting up an appointment with a specialist”.

That was a defining moment in our life. We were reeling and we left our appointment to go home and start doing research on this diagnosis that we had never heard of before. The internet is a scary place for statistics on this diagnosis. We of course were also still earnestly praying that the doctor was wrong and that when we saw the specialist it would have been just some terrible misunderstanding.

August 18, 2009. This was when we saw the maternal fetal specialist who gave us our daughter’s official diagnosis of Hypoplastic Right Heart Syndrome (not Hypoplastic Left Heart Syndrome as we were initially told). He scheduled us to meet with a pediatric cardiologist who would perform a fetal echo to obtain even more detailed information about her special heart. It was all so overwhelming. I think we were in shock.

In between this appointment and the next we named our daughter – Anna Grace. We had this overwhelming need to give her a name and it couldn’t wait. I can’t explain this NEED that I had to give her a name, but my husband and I both agreed that Anna Grace suited our daughter perfectly. The reason we felt it suited her is because Anna MEANS grace so…essentially she would be “Grace, Grace” – it was a double measure of Grace. We were new Christians, both being saved in 2007, and felt that the Lord had already given us so much grace just by saving us – we prayed He would bestow that same grace on our daughter so in naming her “grace, grace” we wanted to honor Jesus. Once she was named I began praying for her by name and having my friends and family pray for her by name as well. Also, by naming her, somehow I was beginning that bond with her and that should the Lord not allow her to live much past her birth that I and everyone else would know that I had a daughter… and her name was Anna Grace. From this point forward I always referred to her as Anna Grace, never as “the baby”.

A week later we met with the pediatric cardiologist who performed the fetal echo and gave us even more detailed information about our Anna Grace’s complex little heart. The detailed diagnosis: Tricuspid Atresia, Aortic Co-Arctation, Transposition of the Great Arteries, Atrial Septal Defect, Ventricular Septal Defect and Pulmonary Stenosis. Our daughter’s cardiologist told us that our daughter was “the rarest of the rare”.

The cardiologist told us that our local hospital would not be able to care for her and that we would need to travel 3 hours away, to MUSC in Charleston, SC to deliver her. That would also be where she would be having the three surgeries she needed to have a chance to survive with her heart defects. The surgeries our daughter would need: “the Norwood” at birth, then a second surgery called “the Glenn” at about 6 months of age and then a third surgery around age three called “the Fontan”. These are open heart surgeries… as in opening her chest completely, stopping her heart and putting her on heart/lung bypass to perform…. Very serious surgeries and no guarantees that she would survive. But, without the surgeries her condition is 100% fatal – usually within the first three days of life.

The other option was to not treat our daughter – this option is called the “comfort care” option. The doctors try to make your baby as comfortable as possible while in the hospital until her little body succumbs to her defect.

We really felt there was no option for our daughter other than to treat her by means of the three surgeries. So… we made plans to deliver our daughter in Charleston. On December 28, 2009 our daughter, Anna Grace was born at 3:48 am in Charleston, SC.

She underwent her first surgery, the Norwood, at seven days old. This was an excruciating day. It was also the very first day that we were able to hold our daughter. Because she had so many lines running into her little body prior to surgery it would have been too dangerous to hold her for fear of disturbing those lines. However, the doctors told us that if we came early before her surgery they would let us hold her for a couple hours and if the lines were disturbed they could be replaced during surgery. So, at 4:00 am on January 4, 2010 we sat in the PCICU holding our daughter for the first time. Crying over her, praying over hear, singing to her and begging God to spare her life. Those two hours flew by more quickly than any two hours have ever passed. At 6:00 am the anesthesia team came to get our daughter. We knew we had to let her go, but everything in me wanted to take her and run.

We were given a pager which we were told the doctors would use to update us on Anna Grace’s progress during the surgery. So we waited in the waiting room, we prayed, we paced and we watched the pager for any updates on our daughter. At about 2:00 pm the surgery was over and we met with her surgeon who told us that everything went as planned, there were no surprises during surgery. That was really great news. The surgeon then told us that the next 24-48 hours were critical. We were informed that because of the amount of swelling these babies endure with this particular surgery that it is standard practice to NOT CLOSE THEIR CHESTS after surgery for 72 hours to prevent any damage that the swelling might cause. (I think also it is to allow for quick access to the heart should any problems arise). The surgeon did his best to prepare us for how she would look when we saw her with her chest left open and only a small piece of “saran-wrap type” material being sewn over her little heart. Despite his best efforts to prepare us, it was shocking to see her for the first time, she didn’t look like our baby because of all the swelling and it was even more shocking to see her little chest OPEN – you could literally see her little heart. As a mother I remember thinking, “how is she ever going to survive this”. Amazingly, our daughter’s swelling dissipated at a miraculous rate and she was able to have her chest closed only 1 day post Norwood. This was really nothing short of a miracle.

The time in the hospital post Norwood was a whirlwind time….. emotional….but that word doesn’t even begin to scratch the surface. However, each day our daughter grew stronger and after 6 weeks in the hospital we were able to finally bring our baby girl home. What a joyous day… one that I wouldn’t even allow myself to dream about, but was finally here!

Once home, our little girl was really not very happy, she cried a lot, she had feeding problems and severe reflux. But – despite these obstacles, she grew and her overall health remained stable. However, (as expected) as each month passed, her Oxygen saturation levels did begin to steadily decline and by May her O2 sats were hovering in the high 60’s. It was time for her second open heart surgery – “the Glenn”. As much as I hated to do this yet again, I knew it was time – my little girl was visibly blue constantly now and I could tell that her little body really needed this surgery.

So, surgery number 2 was scheduled for June 24, 2010. Back to MUSC in Charleston. We trusted her surgeon, the doctors and nurses there – we knew them all by name this time. Even so…..it was even harder to hand her over for surgery than the time before. We had 6 months to know our daughter, bond with her…. It was so very difficult to hand her over to anesthesia.

She did amazingly well during her second open heart surgery – again, her surgeon said that everything went as expected. This time our stay at the hospital was only 10 days long. I consider that nothing short of a miracle. After ten days I brought my very PINK daughter home from the hospital for the second time and this time she truly started to thrive. She was happy now and started sitting up and then crawling and most recently walking… hitting all her milestone like a champ!

Today, Anna Grace is just a little over a year old and we live a relatively “normal” life. He O2 sats hover in the low 80’s now, she is still taking three daily medications and we are limiting her exposure to germs. She is nothing short of a miracle. I am thankful for her – she is a blessing and amazes me every day.

Post-Norwood

Post-Glenn

One Year Old!

You can follow Anna Grace's journey here.

CHD Awareness Week: Aly Jean

A warm welcome to fellow heart mom, Jenny, who shares her journey with her sweet little one below. Aly is about 4 months older than Chase and has her Fontan scheduled for March 16th. Please remember her family in your thoughts and prayers in the weeks and months ahead!

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My husband and I had been married for 3 years when we decided it was time to add one more to the family. On November 14, 2008 I found out we were having a baby! We were ecstatic! For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday for 5 days before that. I just had this feeling~ I knew we were pregnant. Finally, I got a positive one! (2 actually - one for back up :) ) For the next 6 months we blissfully planned for the arrival of our baby. We painted a nursery, we registered for gifts, we picked out a crib... the fun stuff. :) At our 20 week ultrasound, the tech was really struggling to get a good view of the heart. She kept saying, "I can see it, I just can't get a good picture of it." She didn't seem concerned, she just kept laughing that we had a stubborn little baby who wouldn't move the way she needed her to. We laughed right along with her and didn't think twice about it. Never once did it cross my mind something might not be right.

Little did we know, that when we got this picture taken our little girl was hiding more than just her “little girlness”.  We thank god on a daily basis that our Ultrasound Tech paid such close attention and caught that something just wasn’t right with the heart.

On May 9, 2009 I went for my level 2 ultrasound to get a closer look. I wasn't nervous at all. Again, it never crossed my mind something might not be right. Our world came crashing down that day.

Our daughter was diagnosed with Hypoplastic Left Heart Syndrome at 30 weeks gestation. We were devastated but we didn't give up. We were thrilled to find out that the University of Michigan was ranked 3rd in the nation for treating this CHD and was located a mere 2 hours from home. Our daughter, Aly was born at U of M on June 30, 2009.

Beautiful, isn’t she? ☺

She scored 8 out of 9 on her APGAR tests and did very well on the days leading up to her first surgery. Aly was born via C-Section so I was unable to see her until she was over 24 hours old.

It was 7 days before I got to hold her. And even when I did I wasn’t really “holding” her. I was holding blankets and tubes and wires with a little tiny baby in the middle of it all.

This picture was taken just a few short hours before her first open heart surgery.

She had her Norwood procedure on July 6, 2009. She survived surgery and did really well until they got back up to the Pediatric Cardiac ICU. She had a rough patch that evening of trying to get stabilized but pulled through.

Underneath that heart shaped gauze is a yellow membrane that was covering her chest. We could look through the membrane and actually see her heart. Her chest was left open for 4 days following surgery.

8 days later, she went back into the OR for a shunt revision. The shunt that had been placed in her tiny heart was narrowing at one end and had to be shortened. 14 days later, we brought our baby girl for the very first time.

We struggled with feeding and gaining weight, as many heart babies do, but we made it to her Hemi-Fontan procedure on December 4, 2009. Aly did unbelievably well and we were home 5 days later.

As of just last week, we have scheduled her Fontan surgery for March 16. While we are not looking forward to handing over our baby girl again, we are looking forward to having all 3 surgeries behind us. We know that life is full of surprises and there may be more surgeries in her future, but that is not for us to worry about. We are looking forward to living life as normally as we can and appreciating every day for what it is. We are so proud of our little girl and can’t wait to watch her grow! Follow us at www.alyjeansspecialheart.com to see what she is up to now!

CHD Awareness Week: Mary Clare

Today's post is from Kerri, who has a sweet little girl, Mary Clare, who is about a month older than LO. Mary Clare has completed her Norwood and Glenn, and is currently scheduled to complete her Fontan surgery this spring.

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On March 27, 2007 at a routine check-up and ultrasound to determine the gender of our unborn child, my husband and I were told that the tiny baby girl growing in my belly had Hypoplastic Left Heart Syndrome, which, at the time, sounded Greek to us. We walked into the office giddy and excited, but returned home feeling empty, alone and completely terrified.

Hypoplastic Left Heart Syndrome is a congenital heart defect (CHD) in which the left side of the heart doesn’t form completely. We later learned that with this diagnosis, we had three options: 1) Compassionate care, in which our baby girl would be born and given medications to ease her pain and allow her to pass away quickly and quietly 2) terminate the pregnancy, or 3) have a series of three staged surgeries that would not correct her heart defect, but allow her to live. The surgeries were fairly new ground in the medical world and were extremely risky. There was no doubt as to what needed to be done. We prepared ourselves as best we could for the arrival of our baby girl and the long road ahead of us.

Mary Clare Blaylock Pennington was born on June 27, 2007 at the Medical University of South Carolina. I barely got a glance of her chubby cheeks and red pouty lips before they carried her away from me. She immediately needed the team of pediatric cardiologists and specialists far more than needing her mother at that point. Later that night, she was given medications to paralyze her because of complications with another medication to help keep her heart valves open, which was keeping her alive. She was medically induced paralyzed and intubated for 5 days before her first open heart surgery, the Norwood. On July 4th, as fireworks exploded in the night sky outside, our baby’s chest was closed and the long road to recovery began. We were able to bring our sweet baby girl home for the first time on July 20th, finally.

On December 6, 2007 when Mary Clare was 5 months old, we returned to MUSC for her 2nd surgery, the Glenn. She did exceptionally well and was sitting up in her bed laughing and charming the nurses merely 2 days after open-heart surgery! We returned home after only 6 days this go ’round!

We continue to monitor Mary Clare’s heart function and oxygen levels pretty closely as we always will, but she has been doing exceptionally well, and hopefully will be able to engage in most activities that children love. We face a heart catheterization and third surgery in the Spring of 2010, and with God’s grace, she will continue to amaze us with her feisty will to survive and love of life! She is certainly our miracle baby! We are so blessed to have her in our lives and we thank God everyday for every moment He allows us to spend with her.

Four days old, one day before her first open heart surgery, the Norwood.

6 months old, days after her second open heart surgery, the Glenn.

At the MUSC Atrium last month.

You can follow Mary Clare's journey here.

CHD Awareness Week: Noah

Welcome to the first guest post this week as we recognize Congenital Heart Defect Awareness Week (Feb. 7th - 14th)! I'm very excited to introduce you to Silvia, heart mom to Noah.

Also, you may want to check out my guest post on fellow heart mom Jenny's blog here.

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I have a 4 ½ year old son, Noah, who was diagnosed with HLHS after delivery. Some parents learned of their child’s disease in utero, but our journey began immediately after birth. We were sent to MUSC where we learned more about our son’s condition and what the future held for us. Luckily, our journey wasn’t as bumpy as others, but still a stressful one at that. Noah went through all 3 of his scheduled surgeries without any major complications. He always gets a clean bill of health with all of his pediatric cardiology visits (although prior to his appointments, I am a nervous wreck). He is a strong, active, normal little boy that “hides” his condition well. As parents, we will always be concerned for him and carry this worry on our shoulders. We pray for God’s strength as we continue in Noah’s journey and also pray for medical advances that will help with the future of these HLHS children.

Crossing paths with Chase started way before Noah and Chase were born. Chase's mom and I worked in the same department at an insurance company. After leaving the company, we did not keep in touch much. The day of Noah’s Fontan surgery, Chase's mom emailed me not knowing much about Noah’s heart condition. To our surprise, we both were reunited in a new way.

Isn't he such a handsome little fella?

You can read occasional updates about Noah and his family here.

Cardiology Appointment Update

Okay, folks, so there seems to be some sort of misunderstanding regarding the update I shared last week following Chase's cardiology appointment. I've received so many "Yays!" and "Congratulations!" and "Great news!" responses, which have left me quite perplexed. So, here's what I said:

Appt went well. He did *awesome* for the echo!! Will have cath in March or April to get more info on narrowing and possibly balloon it...

There's only so much information you can post in a 140-character tweet, right? Right. So let me break this down for you:

• CHASE DID AWESOME FOR HIS ECHO! Yes, this of course is reason to be excited and think things went well. From the perspective of getting a mobile, determined little 15-month-old toddler to lay still for 20-30 minutes in order to complete the echo and get decent pictures, it was the best appointment ever! He watched a little Cat in the Hat and Curious George on my iPhone (that I happened to download that morning right before we left for his appointment... whew!) and laid so still the entire time. Hubs and I were beyond impressed and proud of our little warrior!!!

Now for the not-so-great news from the appointment:

1. Chase's pediatric cardiologist (PC) saw a narrowing of Chase's left pulmonary artery (LPA) during his last echo in November 2010. He thought Chase would need to head to MUSC in January for a heart cath to look into this problem, but after consulting with Chase's surgeon at MUSC, they decided they could delay Chase's heart cath until early spring.
2. Something to keep in mind: Chase shouldn't have needed ANY cath procedures until his pre-Fontan cath, which, for all intents and purposes, should not be happening until Chase is 3 or 4 years old.
3. At his appointment last Friday, Chase's PC again saw the narrowing of Chase's LPA, and concluded that we needed to get Chase on the cath schedule at MUSC in March or April. Again, if it weren't for this LPA narrowing, Chase would not be having a cath procedure for another 2 to 3 YEARS.
4. Because of the location of the LPA narrowing (near the exact point where his inferior vena cava (IVC) will be connected to his LPA during his final scheduled surgery, the Fontan), it is highly unlikely that any intervention in the cath lab (i.e. ballooning the area) will be very helpful. They cannot place a stent to open this narrowing up, again, because it is where the surgeon will be connecting the IVC to the LPA during the Fontan. So essentially, there is NOTHING they can do about this narrowing, EXCEPT...
5. Chase may have his Fontan as early as THIS SUMMER, when he will barely be 18 MONTHS OLD. The preferred age for the Fontan at MUSC is 3 or 4 YEARS OLD. Obviously anyone can see this is a HUGE discrepancy in age. Chase would be much younger, weigh much less than they'd like, have much smaller veins and arteries than they'd like, etc. During the Fontan, the surgeon will use an extracardiac conduit, essentially a graft/tube, and he doesn't want to have to go back in with another surgery later to change or resize it as Chase grows. All in all, they CAN do the Fontan this young but it is NOT preferred. By any means.
6. Just to confirm, in case I've lost you, THIS IS NOT GOOD.

So sorry that my earlier tweet/text on Friday didn't seem to convey the outcome of Chase's appointment very well. It's difficult to keep people updated with the right information, especially if they don't read my blog. I like to put things out here so that I can avoid telling the same stories over and over and over again.

But I digress... I will tell you that I sent an email to a PC at MUSC who is very familiar with our case and asked him several questions concerning Chase's PC's assessment of needing the cath in March or April. When I spoke with the MUSC PC previously, he informed me that it is not at all uncommon to see a narrowing at the point in the LPA where the stent (from the Norwood) was removed (during the Glenn). Only thing is, they typically never see this on echo, but since Chase was able to get such good pictures during his Nov. echo and again last week, they were able to see the narrowing on echo. So if you think about it, it's quite possible that almost all HLHS patients in our area aren't sent down to MUSC for their pre-Fontan cath procedure until they are closer to 3 or 4 years old, and they never would've known about the narrowing because it's almost impossible to see it on echo. So hubs and I are very interested in the MUSC PC's opinion once he has a chance to review the Nov. and Feb. echos and determine if he thinks it's necessary to be concerned about the LPA narrowing, enough to put Chase through a potentially unnecessary cath procedure, which requires anesthesia, intubation, an overnight stay (at minimum), etc. If the MUSC PC feels it'd be in Chase's best interest to move forward with the cath if for no other reason than to take accurate measurements of the LPA narrowing and confirm there are no issues or problems with the decreased blood flow to the left lung, nor conversely, no issues or problems with the increased blood flow to the right lung, then so be it. We will do whatever is in our son's best interest. However, hubs and I have never been the kind of parents to take one person's opinion as the final answer and will continue to question every decision regarding our son's care. Obviously. We are his only advocates and we take our job VERY seriously.

Hopefully this helps you all understand where we're at and what our next steps will be. Please keep us in your thoughts and prayers as we work with Chase's medical team to determine what is truly in his best interest. Thank you!

On that note, I think I'll share a few pics of my little man from his appointment last Friday. You're welcome! :)

Waiting to be called back for the echo. Notice his little one-socked feet... they had just finished his pulse ox (and blood pressures).

The end of the echo. He was absolutely amazing. This boy never ceases to amaze me!!!

Waiting to see the doc to discuss the echo results. Just look at those eyes. He sure does have a story to tell, doesn't he?

CHD Facts

February 7-14, 2011 is Congenital Heart Defect Awareness Week. I've borrowed a wonderful idea from a fellow heart mom, and will be spotlighting a different CHD child on my blog each weekday starting tomorrow. These kids all have a connection to Chase in one way or another. All of them have had similar journeys... some with more or less bumps in the road. Please stay tuned this week for these encouraging and enlightening stories of other families who have been affected by CHDs. We covet your ongoing support and continual efforts to aid in raising awareness of CHDs.

Below you will find several interesting facts you may or may not already know about these life-threatening and life-altering defects.

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• Congenital heart defects (CHDs) occur when a baby's heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.Some environmental factors that increase the risk of CHDs include the mother’s use of cocaine, alcohol or certain medications while pregnant. Some maternal medical conditions – such as diabetes – may also increase risk.

• CHDs are the most common birth defect – and the leading cause of birth defect-related deaths.

• CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss – and kill twice as many children as childhood cancer.

• It is estimated that 40,000 babies with CHDs are born in the United States each year – that’s one in every 100 babies.

• Although some babies will be diagnosed at birth, newborns are not routinely screened for CHDs – and pregnant women are not routinely tested for CHDs.

• There are approximately 35 different types of congenital heart defects.

• Some CHDs may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood.

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.

• Early detection is critical to the successful treatment of CHDs. Some heart defects can be detected by a routine ultrasound – but the most effective prenatal test is an echocardiogram performed by a Pediatric Cardiologist.

Source

Parenting 101: The Drama Continues

Hey, folks! Before I get into today's post, I want to ask for your thoughts and prayers for us this morning. Chase has a cardiology appointment at 9AM and we are very anxious to see how he does. He's NOT a fan of anything doctor-related and they will be taking his height, weight, O2 saturation and four limb blood pressures. All of this will make for one VERY unhappy boy. But after all of that, and waiting an undetermined amount of time in a tiny exam room, we'll head back for him to get an echo. I have no clue how we'll keep a mobile 15-month-old still for 20-30 minutes, but we'll be trying everything in our arsenal to keep him still so we can get good images for his cardiologist. Based on the findings today, his cardiologist will recommend whether or not we need to head to MUSC for a heart cath procedure this spring/summer. Please pray for good findings and for Chase to cooperate as best as he can. Thank you in advance for your thoughts and prayers!

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It's been a very tumultuous few days here. There's been a lot of thrashing on LO's part. And my goodness, is it ever hard for ME to completely change my parenting methodology essentially overnight. I completely understand and agree with Dr. Leman that, "Your child's behavior has everything to do with you." But wow. In order to get her to change, I have to change first. But not only change, I also have to be consistent. That's a tall order, friends!

A few days into our new parenting approach, we taught a pretty big lesson that I figured would make a pretty big impact. It was Sunday afternoon, and time for the kids to take their naps. Chase went down perfectly, as usual. LO, however, was a different story. I put her down and about 30 minutes later (30 minutes of playing in her room, mind you), she bounded out and proclaimed she was ready to go outside and play! The weather was perfect and we had already discussed during lunch that we were going to play outside after naps. Unfortunately, I had the not-so-joyous privilege of informing her that (A) she hadn't taken a nap, (B) she was going to go lay back down and (C) she lost the opportunity to go outside and play after nap time. As you can imagine, she wasn't very pleased.

Then came the joy of having to follow through with the plan. After the kids were both up, we got Chase dressed to go outside. When LO realized it was time to go out and play, she wanted to get her coat on, but I told her she wasn't going to be able to join us outside because she wouldn't take a nap.

Crazy. Drama. Pouting. Crying. Etc.

Hubs and I took Chase into the backyard and introduced him to some new toys (keep in mind these toys are all new to him, but they happen to formerly belong to LO... talk about rubbing salt in the wound, huh?). He got to try out the cozy coupe, the tricycle, slide and outdoor cottage. He had a BLAST! As if you needed proof, check out the pics below:

He LOVED ringing the doorbell... over and over and over and over...

So while Chase and mommy and daddy were having such a fun and wonderful time outside, enjoying the beautiful weather, what exactly was LO doing the entire time?

Standing at the glass door, watching and envying our every move.

Let me tell you this picture was taken about 10 minutes into our afternoon of outdoor fun. For the first 5 to 8 minutes, she was doing the "ugly cry" with every bit of wailing you can imagine. She was NOT happy about how things went down. But after we came inside, I was able to talk with her rationally and explained the circumstances again. I think she understood and I think it made an impression.

Hiatus

Sorry to disappoint, but I'm taking a much-needed mental health break today and am not discussing LO's behavioral challenges nor our recent efforts at thwarting them. No news is good news, right? Right.

Instead, I offer you the most lame post ever written. I happened to grab a Happy Meal for LO yesterday (it's been eons since we've frequented the local McDonald's establishment), and rather than ask for a girl toy (it was a tiny My Little Pony that I knew she wouldn't have anything to do with), I asked for a boy toy, which happened to be a truck of some sort (talk about making LO's day).

After she finished her lunch, I opened her toy and discovered this:

That's a pretty awesome, cool-looking, exciting little plastic truck, huh? Geez. Then I looked further and found these:

Seriously? Who in their right mind has that kind of time or energy or patience to sit and peel off all of these tiny stickers? Really. And seriously, where are they supposed to go? Next slide, please.

Ya. There's your diagram. Hope you didn't have any plans for this weekend or next for that matter. Ohmyword. Thanks, McDonald's.

I obviously chose to give LO the truck and stickers so she could let her little imagination run wild and do with those tiny stickers whatever she wanted. Good times.

And, just because he's so totally cute, here's a pic of what Chase was doing while I was grocery shopping this morning before we had to pick LO up from school:

Ain't he the cutest?

Promise I'll return tomorrow with the next post in my series of our current crazy life. :)

Parenting 101: Executing the Plan

Hubs and I officially started executing the our game plan with LO based on Dr. Kevin Leman's book, Have a New Kid... by Friday, late last week. Let me tell you, it's been interesting to say the least. To give you a little glimpse, LO went 3 straight nights without eating/finishing her dinner.

It was insane.

I tried a new approach as mentioned in the book. See, family dinners together are a daily staple in our home. But Leman suggested dining family style. In other words, place all of the food on the table so each person can serve themselves (I always make all of our plates in the kitchen and then bring the plates to the table). This way, LO is provided with the opportunity to put as much of each item on her plate as she'd like. In hindsight, I didn't really think things through well enough because I made a variation of -- get this -- Shepherd's Pie for dinner that night. I've never made it before (ground beef, veggies and mashed potatoes in one casserole-type dish), and quite frankly, it was NOT very good. Anyway, I let LO dish it onto her own plate and not surprisingly, she only placed a morsel or two on it. No biggie. I also had sliced strawberries in a small bowl that she dished onto her plate as well. She had finished the strawberries in record time, but when it came to the rest of her dinner, she wasn't too pleased. She made ONE comment. One. I'm not even sure what it was... I think she was just playing with her food and then said, "I don't like it!" without even trying one bite. I got up, calmly took her plate, fork and cup to the kitchen, and dumped the remains on her plate into the trash can. She immediately got upset and started talking very ugly to me, and without a word from me, she got up, pouted and stomped into her room, angrily mumbling something about being MAD!

Hubs and I continued to enjoy our dinner with Chase, talking, laughing and having a good time. LO continued to wail for a few more moments, then came back into the dining room.

LO: "Mommy. I'm still hungry and I want my dinner." (said very angrily and matter-of-factly with arms crossed).
Me: "Oh, I'm sorry, LO! You said you didn't like your dinner and got upset and got down from the table. You know once you get down from the table, you're finished. You can have something to eat in the morning for breakfast." (said happily with a HUGE smile on my face).
LO: "Ugggggghhhh!" (pouting, angry, arms crossed, stomping back to her room)

She came back out a second and third time. The third time, she was somewhat remorseful and tried the puppy dog eyes and told me, "But mommy, I'm still hungry." It truly was the saddest thing. The "old me" would've probably given in and told her she had one last chance to sit down and eat. But the new me told her, essentially, "Too bad."

She was obviously distraught and looked somewhat confused by the events, but didn't really catch on to it. The next night was essentially a repeat of the one above. And the third night was as well.

Finally, on the fourth night, we were able to have a successful, happy, relatively quiet dinner as a family of four. It was awesome. And the way she'd look at me when I stood up to get more milk or another napkin... she'd immediately put her arms around her plate as if I were about to swoop in and steal it from her mid-meal! I had to chuckle at that... Haha!

The same philosophy applied throughout the day. One afternoon, she asked for a snack in her usual way: "Mommy, may I please have a snack please, Mommy?" (she gets extra points for redundancy). I got her some grapes and a cup of water, and set them on the kitchen table. I told her that I placed her snack on the kitchen table and she could sit in her chair and eat it. She responded by saying she didn't want to eat it at the kitchen table, she wanted to eat it at the coffee table so she could watch TV. Without a word, I walked over to the kitchen table, picked up her grapes and tossed them into the trash and dumped her water into the sink. That obviously elicited quite a response from her. She was NOT happy. After she calmed down, she asked me why I threw her snack away. I explained to her that I asked her to sit at the kitchen table to eat her snack and she did not listen to me, so she lost the opportunity to have a snack. I told her she wouldn't have anything to eat until dinnertime.

It's so very unusual for me to respond this way to LO. Seriously, any time she wanted anything, I would get it for her in a heartbeat. She was not at all expecting me to stop letting her have her way 24/7. It was all so unexpected in her little eyes.

Truthfully, I think what was the most unexpected was her behavior over the next several days. Dr. Leman stated, "If your child is thrashing as he comes out of the water, you'll know you're on the right track." Well let me tell you, if LO's behavior was any indication at all, we were definitely on the right track... but how long would things have to be worse before they'd start to get better?

Stay tuned! I plan to share more of LO's horror stories and, hopefully, a light at the end of the tunnel!

Parenting 101: Time for Change

As I mentioned yesterday in the first post in this series, hubs and I were at the end of our rope with LO's recent behavior. It was time for a change.

A BIG change.

((Let me apologize now for this L-O-N-G post. I didn't expect it to be quite so lengthy, but hopefully it'll be a quick and easy read for those of you who decide to forge ahead.))

Let me set the scene for you. LO's preschool teacher sends home a class newsletter each Friday. Included in the newsletter each week is a special section for the principal to share some insights for parents. About two weeks ago, I noticed in the principal's section, she had shared a quote from Dr. Kevin Leman's book entitled, Have a New Kid... by Friday.

I thought to myself: A new kid? By Friday?!

Yes, please!

A few short moments later, I found myself on Amazon purchasing said book. Really, what did I have to lose? Things couldn't get any worse, and maybe this $13 book would be the answer to our problems.

When the book arrived (2-day shipping for free... Thank you, Amazon Prime!), I immediately opened it up and started reading through it at lightening speed. If nothing else, this book is a quick and easy read, which really, it should be considering it was written specifically for parents who don't have the time to read for leisure because they're too busy dealing with their frustrating, havoc-wreaking, disobeying children! The book is comprised of short chapters, one for each of the 5 weekdays, Monday through Friday. I want to share with you my take on the gist of each chapter as well as my thoughts/concerns about implementing the strategies on our unsuspecting 3 1/2 year old (NOTE: This is where the post becomes quite lengthy!).

Monday

Notable quotes:

1. "Children are masters at manipulation. Don't think they're not manipulating you."
2. "Kids do what they do because they've gotten away with it!"
3. "Your child's behavior has everything to do with you."
4. "If you want your child to take you seriously, say your words once. Only once. If you say it more than once, you're implying, 'I think you're so stupid that you're not going to get it the first time, so let me tell you again.'"

New strategy:

1. Say it once.
2. Turn your back.
3. Walk away.

My thoughts:

1. Say it once? Come on, people. What do you take me for? Do you know how many times I have to ask LO to stop trying to push her brother down before she actually listens? At least 62 times. And that's only when combined with either (a) the threat of taking one of her toys away from her or (b) some kind of physical interaction (i.e. moving her brother away from her) or (c) BOTH! And sure, it makes sense that by telling her something over and over again, it sends the message that we don't think she's capable of "getting it" the first time, but her behavior tells us we're not far off-base!
2. Yes, I fully realize she's manipulating us. I have no doubt of this. She is her father's daughter. I've heard stories of hubs' childhood that make me shudder in fear. I think this particular truth is one I'll keep reminding myself of as we institute changes recommended in this book (so I won't feel like the world's worst parent).
3. I have no doubt that LO thinks she can do (or not do) anything and say (or not say) anything simply because we've never truly disciplined her in a way that translated as discipline in her little 3 1/2-year-old brain. We have our work cut out for us.

Tuesday

Notable quotes:

1. "The top 3 long-term concerns of parents have to do with a new kind of ABCs: Attitude, Behavior and Character."
2. "The key to changing your child is changing your attitude."
3. "If the doctor says, 'You responded to your medication,' that's good. If the doctor says, 'You reacted to your medication,' that's bad."

New strategy:

1. Let reality be the teacher. Don't rescue your kids from the consequences of failed responsibility.
2. Learn to respond rather than react. Don't let your emotions get the better of you and don't speak or act without thinking first.
3. B doesn't happen until A is completed. If you've asked your child to do something and it's not done, you don't go on to the next event -- no matter what that event is.

My thoughts:

1. I couldn't agree more that our interest lies in the long-term goals of parenting -- raising children with the attitude, behavior and character we believe will aid in them developing into contributing members of society.
2. Wow. How tall are these strategies to measure up to, specifically to respond rather than react? I'm sorry, but have you had to fight with your 3 1/2 year old for 30 minutes just to get her to go potty before bedtime? How can you not lose your patience with that situation and react emotionally, especially when her brother is already in bed and she's making enough noise with her defiance and complaining to wake the entire neighborhood?
3. I was happy to see the ideals of letting reality be the teacher and that B doesn't happen until A is completed. I feel like we're already utilizing these strategies with LO, but I have no doubt that we haven't been as consistent with them as we need to be in order for them to be effective.

Wednesday

Notable quotes:

1. "What your children think about you at any one particular moment isn't necessarily what they will think about you for life."
2. "Your child needs not only your attention but also a relationship with you!"
3. "Being happy all the time isn't real life, and you're not being fair to your child if you're providing a continual Disneyland experience."

New strategy:

1. Determine what kind of parent you are: Permissive, Authoritarian or Authoritative.
• A permissive parent is a slave to the child; places the priority on the child, not on his or her spouse; robs the child of self-respect and self-esteem by doing things for her that the child can do for herself; invites rebellion with inconsistent parenting.
• An authoritarian parent makes all decisions for the child; uses reward and punishment to control the child's behavior; runs the home with an iron hand, granting little freedom to the child.
• An authoritative parent gives the child choices and formulates guidelines with him; provides the child with decision-making opportunities; develops consistent, loving discipline; holds the child accountable; conveys respect, self-worth and love to the child and therefore enhances the child's self-esteem.

My thoughts:

1. Wow. What an eye-opening chapter this turned out to be! I think I can safely say that I am without-a-doubt a permissive parent and hubs is an authoritarian parent. No wonder LO is so confused! I always expected hubs and I to have differing parenting styles, and I always assumed that dynamic would be beneficial to our ability to parent our kids. But I guess I never really thought about the negative impact that would have on our kids.
2. I do believe we both try a lot of the authoritative parenting techniques often, but eventually we both resort to our ingrained approaches and that just adds to the confusion.

Thursday

Notable quotes:

1. "Every child lives up to the expectation you have for him."
2. "Want to empower your children? Give them responsibility."
3. "Praise links a child's worth to what she does. Encouragement emphasizes the act."

New strategy:

1. Respect your children:
• Never do for them what they can and should do for themselves.
• Don't repeat your instructions.
• Expect the best of them.
• Don't praise them.
• Encourage them.
2. Help your child develop the key pillars of self-worth:
• Acceptance
• Belonging
• Competence

My thoughts:

1. We're really getting down to the heart of the matter today, now aren't we? Respect your child? My focus has always been the other way around, so I know for a fact this concept has been neglected in our household. It's so simple and makes so much sense.
2. Expect the best, get the best. How poignant! I need to remember to expect the best from my children, in all things, all the time. I don't want to build up their self-esteem at the cost of their self-worth! The book mentioned that praise focuses on how "good" a person is while encouragement focuses on an action. And I know I've continually caught myself doing things for LO that she's more than capable of doing herself, but she just never does it my way. Or she makes a big mess when she does it. Or whatever. I need to let go of that mentality and support her in developing her own self-worth.

Friday

Notable quotes:

1. "Children who have been allowed to have their own way for a while can be extremely powerful."
2. "If your child is thrashing as he comes out of the water, you'll know you're on the right track."
3. "Friday is FUN DAY -- the day you decide to go for it! You're going to launch your game plan on your unsuspecting children."

New strategy:

1. The Top 10 list of what it takes:
1. Be 100 percent consistent in your behavior.
2. Always follow through on what you say you will do.
3. Respond, don't react.
4. Count to 10 and ask yourself, "What would my old self do in this situation? What should the new me do?"
5. Never threaten your kids.
6. Never get angry.
7. Don't give any warnings.
8. Ask yourself, "Whose problem is this?"
9. Don't think the misbehavior will go away.
10. Keep a happy face on, even when you want to... do something else.

My thoughts:

1. Whew! How about that? All of the strategies and principles one needs to raise a child, right there in black and white. Who knew it could be so easy? Right. It's easier said than done, obviously. But I feel empowered to a degree that maybe, just maybe, Dr. Leman slipped me the other team's playbook under the table. Little Miss doesn't know we're on to her. And boy is her kingdom about to experience some massive changes. I guess that means it's time to get started!

If you made it this far, thank you so much for humoring me and following along on our journey! Stay tuned tomorrow for my next post in this series. It's the one where LO doesn't see what hit her. ;) Bwahaha!