Striving for excellence

I have not done a post in a while. I have been kind of scared. I proclaimed by faith that Addison would be healed and was thinking, I could possibly look like one of those people who was getting the wrong message. We changed our Cardiologist to the one in CH Los Angeles who gave us the 2nd opinion in February.

In March, we went back to see Dr. Skalansky in CHLA. Nothing had changed since the February appointment. Her heart was still leaking severely and the left ventrical was dilated from the leak. I admit I was a little disappointed. The good news was that we could hold the course and NO SURGERY.

Around the same time, Jesse and I were experiencing the challenges of being newly married. We have only been married a little more than a year and a half and we have had to deal with so much in that short amount of time. It has been a rollercoaster. There were many things that I have had to deal with on a spiritual level. One of my many challenges as a wife is letting my husband lead. The whole submissive thing is difficult for someone like me. But really, I have had to learn to really let go and let Jesse lead. I grew up with STRONG women and I have known nothing but to be a strong woman. But I find when I try to be the strength of the family, it just led to things being unhappy. Instead of being a strong woman, I have been learning to be the WISE woman.  "The wise woman builds her house, but with her own hands the foolish woman tears hers down." (Proverbs 14:1). My strength has the ability to tear down my home and I have realized that. I am working on concentrating my efforts on being wise instead of strong willed.


Aside from that, we have had to deal with the issue of boundaries. We believe that because God has given Addison to us as one of his miracles that she is a gift. And with that gift comes the responsibility to raise her in the ways of the Lord. The world we live in today is full of sin and things that are not of the Lord. Many times, people around us did not understand or agree with our beliefs. So, we really had to set certain boundaries and really put our foot down and stand for what we believe. You see, God sent us his only son to die for our sins and transgressions. We are also promised that "by his wounds, you have been healed" (1Peter 2:24). But to receive such deliverance, you must repent, receive Jesus as your Lord and Savior and live in the ways of the Lord. This leads us all to the difficult part. The world will not always get this and to hold ourselves to that higher standard is a BIG change. Sure, we are good people, but are we true Christians? It is one thing to receive God's blessing but the dying to yourself and the whole taking up your cross part, is some hardcore stuff. We have really had to take a look at our lives and see what God was trying to tell us through Addison.

First off, we looked at our biggest weaknesses (we have a lot, so we will talk about the specifics some other time). We looked at why we had those weaknesses and realized that they came from the homes we grew up in. So, for us not to pass those weaknesses to Addison, we would not have to practice them here at home, so that Addison will not learn it. For instance, if you smoke in front of your kids, chances are your kids will smoke. My grandfather smoked, my parents smoked and I smoked. But because I no longer smoke and Addison will never see me smoke, she has a better chance of not being a smoker to begin with. HOWEVER, she will predispose to smoking and it is something I have to guard so that she does not smoke. So, LESSON #1 Don't pass on your bad traits to your child.

After attempting to live up to "Lesson 1" we have visited Dr. Skalansky again and are please to say that Addison's heart has gotten better. It is still leaking but her ventricle is not as dilated as it used to be. So, once again, NO SURGERY, and we are able to stay the course. We have another appointment on July 20th. Meanwhile, we will continue on our spiritual journey until we can get to the place the Lord needs us to be to heal Addi completely. I sound like a bit of a loon but standby and let it be a testimony to all of you searching that Jesus is the only way, the truth, and the light. This is the way we are learning that lesson and we pray that our story can lead you closer to finding the Lord or even encourage you that the Lord is faithful and will take care of all your needs. Thank you all for your prayers and continued support.



With Love,

Jesse, Nicole and Addison.



“Praise the Lord, O my soul and forget not his benefits—who forgives all your sins and heals ALL your diseases” (Psalm 103:2-3)

God is Good

So, I worked all day yesterday on the Addison testimonial video. God led Jesse and I not to bring her to surgery on the 9th. I needed to proclaim that GOD WOULD HEAL Addi because my mind was going crazy.  Science was saying that Addi needed surgery to fix her heart and the Lord was leading us to decline and by pure FAITH believe that he will heal her.

I admit that I was questioning if I got the right message or I was just going crazy. God's message was still the same-- stay the course, hold, no surgery. I decided to make Addison's video to proclaim that in this household, we will follow and serve the Lord. Hence, the video that made everyone I have been talking to cry. So I proclaimed yesterday that GOD WILL HEAL.

Today, we went to Children's Hospital Los Angeles. We saw another cardiologist and went through the whole heart diagnostic (echo, ekg, x-ray, etc. etc.). When he spoke to us this time, he said that they deemed Addison's leak to be moderate to moderate/ severe (as compared to the past 2 echos that have been deemed severe). He suggested that we not go to surgery but try to be more aggressive on the medicine to intervine.

I about died when I heard this. Tears of joy were coming down my eyes. I proclaimed GOD's truth and here was HIS promise being shown to me. I know that its not complete healing but God promised us a healing, and we will get a healing. Thank you all for your prayers and support. We will keep you posted on Addison's heart.

If you have not checked out the video, please check it out.

God Bless,
Jesse, Nicole, and Addison

http://www.youtube.com/watch?v=npN5FZChQfo

The timeline has changed

Addi's doctors (the cardiologist and surgeon) think it is best if she gets a mitral valve surgery sooner rather than later. They have booked her for February 9th. Please pray with us. We want to try to push it out further or not all all.

Dear Lord, we pray for Addison's heart oh God, that you protect it and heal it. May your will be done as we remain your faithful servants. We thank you for blessing us with a beautiful child that we have dedicated to you Oh, God. Please touch those around us, the doctors, the assistantants, our family and friends, that we may all move together by your mighty hand to make sure that Addison is safe and that she will be surrounded by love wherever she may go. May Addison be a testimony, your Addi-"Witness", as you perform a miracle that only can be from your mighty hands. We all pray... AMEN!

Here we go again... another ride

So, we are a bit on an emotional roller coaster right now. Addison is doing well her heart function is "low-normal" as her Cardiologist, Dr. Chang described. However, he is concerned that her mitral valve leak has not gotten any better.

He informed us today to expect her to go back to surgery in 3-6 months from today. Then, later in the appointment, he said MARCH!!! Yes, March. I was in such shock that I could not even cry, I had this stupid look on my face like,  "did he just say that?" 

After the appointment we took Addi to the lab to get blood drawn, I was still in shock and it slowly started to hit me that this could actually be our reality. Tears started to roll down my face as I relived our 5 week heart repair ordeal 5 months ago. Then I caught Addi looking at me with her little Addi gaze. I wiped the tears from my cheek and smiled at her, she smiled back. Then I realize that I can be the Eeyore mom about all this or the Tiger mom. I know that if I cry and whine about this, it only makes it harder on Addi.

So, I need to save my energy for her and make sure that no matter what God's will is, I am 100% there for my little girl. We do not have any other details this moment and we will be clearer with the path we will be taking in the next few weeks. I will update this blog as soon as I hear anything. So, please check the blog for any updates. I know last time I used facebook but not everyone had an account.

God has a promise and I want to collect on that promise Exodus 23:25-26 "Worship the Lord your God, and his blessing will be on your food and water. I WILL TAKE SICKNESS FROM AMONG YOU,... I WILL GIVE YOU A FULL LIFE SPAN."

Please pray for Addi's sickness to be healed and for Jesse and I to make wise decisions.

Love,
Jesse, Nicole and Addison

One in a Million

So, my cousin told us once that You don't worry about the statistics until YOU ARE a statistic. Today, I started to wonder what are the chances of having Addi  and her heart. So here are the statistics I found on various medical websites.

8 in 1,000 newborns have Congenital Heart Defect (CHD). Addison is one of those 8. There is a 0.8% chance of that. That would be 8000 out of 1 Million.

A VSD (hole in the heart) is the most frequent of the various types of CHD (25%-30% of all CHD). Approximately one infant in 500 will be born with a VSD. Addison is the one in 500. There is a 0.2% chance of that. Aside from that, a Straddling tricuspid valve is another uncommon anomaly that is associated with a VSD. That would be 2000 out of 1 Million.


So, back to those same 8 in 1000; 8–11 percent have coarctation of the aorta (Narrow aorta).  That makes it a .064%-.088% chance that someone will have that. And guess what? Addison has that.That would be 640 out of 1 Million.



Heart block following cardiac surgery is seen in 1% of patients. So, Addison is the 640 in a million who has a coarctation and one of 6 of those kids who gets postoperative Heart block . Addison has that.That would be 6 out of 1 Million.


The prevalence of third-degree AV block is 0.02%. Only 200 out of 1 Million have a permanent pacemaker to cure the heart block... Addison has that.


The prevalence of postoperative of chylothorax is 0.85%. So, Addison is the 640 in a million who has a coarctation and one of 5 of those kids who getspostoperative of chylothorax. Addison had that.That would be 5 out of 1 Million.

Combine all this together and Addison is truly 1 in a million!

Addison's Diagnosis and Prognosis

St Jude Hospital – Fullerton, CA

Addison was diagnosed with a VSD, ventricular septal defect (a hole in the wall that separates the right and left ventricles of the heart) while she was still in utero. We were told that the VSD was large and would not close naturally and that our child would need to have surgery between 4-6 months old. The day after she was born, we were told that in addition to her VSD, she also had coarctation of the aorta (a narrowing of her aorta). Addison was immediately transferred from our birthing hospital -- St. Jude to Childrens Hospital Orange County (CHOC) since the coarc was serious and would have to be repaired immediately.

Children’s Hospital Orange County [CHOC]

After Addison was admitted to CHOC, the diagnosis got even worse. The coarctation itself was not the serious problem now, it was the VSD. Her tricuspid valve was straddling the VSD hole and could not be fixed without damaging the muscles that control the valve. The issue with moving the valve is that it would most likely leak and need constant surgery to fix. The surgeons at CHOC felt the difficulty to perform a full repair on Addison’s heart was on a scale of 9/10. Instead, they recommended the Fontan procedure, a 3 part surgery that would require Addison to receive open-heart surgery as a newborn, again at 3-6 months, and finally between 2-3 years old. They would basically make her perfectly working two chamber heart into one chamber and cut her open two more times.

At that point we were in despair. How could things turn from bad to worse? The chief of Cardiology offered us another solution that the surgeons were reluctant about. He told us about Dr. Reddy up in Stanford, CA that could perform a full repair on Addison-- VSD and coarc fixed in one shot.

The surgeons really pushed for us to take the single chamber solution stating that it was the more conservative way to go. We prayed and we looked to the Lord for guidance. At this time, my husband and I decided to go with the conservative solution.

Stanford Children’s Hospital [LPCH] the legend of Dr. Reddy

Almost simultaneously, Dr. Reddy contacted us and believed with near certainty-- 95-98% chance that he could do a full repair. If the repair did not work during surgery, he would fall back to a single chamber banding method. We were touched by the Holy Spirit because we threw our initial conservatism out the window and trusted Dr. Reddy, I man we had never met or heard of before, with our daughters medical care with a 5 minute conversation.

We haphazardly made our way as a family to Stanford’s Lucile Packard Children’s Hospital (LPCH). The surgery was successful but Addi went into complete heart block (complete AV block) means that the heart's electrical signal doesn't pass properly from the upper to the lower chambers. Her electric conduction system was damaged from the surgery and a she required a pacemaker at this time. There is a 1%-4% chance that the pacemaker will not be needed later in life. At this point the doctors are saying the chances are slim of her heart block resolving on its own.

Fountain Valley, California
We were finally able to take Addi home after 5 LONG weeks. We had to teach her to feed and help her regain strength and reach her "milestones". Amazingly enough, Addi has been pretty advanced with them. She sat in a bumbo at 2 months, started smiling and laughing. She could even bear weight on her legs. Addi has always been a curious creature. You will always see her observing and enjoying the world around her.

As of today, the doctor claims that Addi has SEVERE mitral valve leakage (regurgitation). He thinks that we will see Dr. Reddy again-- he is saying a 90% chance. He also said that he is hardly wrong... but we will see, God loves to confuse the wise. =)

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Related Terms and Definitions


Coarctation of the aorta is a congenital (present at birth) heart defect involving a narrowing of the aorta. The aorta is the large artery that carries oxygen-rich (red) blood from the left ventricle to the body. It is shaped like a candy cane, with the first section moving up towards the head (ascending aorta), then curving in a C-shape as smaller arteries that are attached to it carry blood to the head and arms (aortic arch). After the curve, the aorta becomes straight again, and moves downward towards the abdomen, carrying blood to the lower part of the body (descending aorta).

Ventricular septal defect (VSD), a congenital (present at birth) defect, is an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles.

Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped out to the body through the aorta.


Mitral valve regurgitation means that one of the valves in your heart—the mitral valve—is letting blood leak backward into the heart.  Heart valves work like one-way gates, helping blood flow in one direction between heart chambers or in and out of the heart. The mitral valve is on the left side of your heart. It lets blood flow from the upper to lower heart chamber.


Heart block- When this occurs, an independent pacemaker in the lower chambers takes over. The ventricles can contract and pump blood, but at a slower rate than that of the atrial pacemaker.
These impulses are called functional or ventricular scope beats. They're usually very slow and can't generate the signals needed to maintain full functioning of the heart muscle. On the ECG, there's no normal relationship between the P and the QRS waves.
 Heart block may result from an injury to the electrical conduction system during heart surgery.

The VSD and the Coarch were fixed by Addi's surgeon Dr. Reddy at Stanford. See link
http://www.lpch.org/findADoctor/search/doc.pl?doc=18537&resultSet=18537