Home sweet Home

Late Friday afternoon we were released from the hospital and decided to stay out in Palo Alto for an extra evening to make sure all was well with Luke.  He did great throughout the night, so we packed up and were home late Saturday evening.  

We were all so very excited to be back home after two weeks and most importantly that Luke did not have to have open heart surgery at this time.  The only difficult part now is the uncertainty of the time frame before he has to go back into the OR and of course the more you know medically the more you are concerned with the what ifs.  It's so easy for some to say, well trust in God and don't let your mind go there.  However, the reality of it is we are imperfect and the mind likes to try and take over.  So we are praying that the God takes away the fear for being worried about Luke and that he gives us peace to enjoy each moment until then.  

Luke had a great day out on Sunday with our wonderful neighbors (who are like our family). He was in his Jeep racing Ray who was in his golf cart.  Then he went on to play with Sandi.  You would of never known he was in the hospital just two days prior.  We pray that he continues down this path of recovery.   He said he misses his friends, so I told him not to worry mommy will have our social calendar booked with friends in no time at all. :)

We have a follow up on Friday with Luke's cardioligist Dr. Mark Skalansky in Los Angeles and we hope the results will be the same as they were last Friday.  Please help us continue to pray for our little guys "special heart."

Thank you again for all your love and support!

It's 11:00pm and we are finally settled in our hospital room. Luke's procedures were delayed and he did not go in until 1:30. It took over 5 hours to complete all procedures and we feel very blessed to share that Luke is doing well and recovering quickly. He is already ordering us and the nurses around. From the moment he woke up he was telling the nurses what they were suppose to do and how to do it. That's our boy :)

As for the Endoscopy (GI) It was found that Luke has a very inflamed esophagus and will be treated aggressively with medication.

The catheterization was performed by Dr. Perry and his team, they took amazing care of Luke. They were able to balloon Luke's Left Pulmonary Artery and they believe that this will help open up the narrowing in his artery. With regards to the Pulmonary Valve they verified the obstruction and it looks like his valve flattened and shrunk, which most likely was a cause in his narrowing and obstruction. Dr. Perry ballooned Luke's valve and stented the valve. First results showed that it everything went well, but with the stenting process it alleviates the function of the "valve" and allows regurgitation back into the heart. Depending on how Luke's body tolerates the regurgitation and as long as the valve does not narrow again, this will determine the level of success of the procedure. This will also determine how much time the stenting process will buy Luke before he has to have an open heart repair.

Our prayer now is for Luke's heart to function well and for a quick and healthy recovery.

We are so thankful for our Gracious God. We pray that he will continue to place his healing hand on Luke.

We want to thank everyone for all your prayers, emails, and calls they have meant so much!! Also, a great big thank you to Grandma Laura, Papa Dave, Grandma Marsha, Big Al, Grandpa Jim and Auntie Bridget for coming up to support us and be there for Luke. He was so excited to have you here and you were a big part once again to a big day. We love you!!

We will keep you posted on Luke's recovery.

All our love,
The Chez Family

Grandpa Jim, Grandma Laura, Papa Dave, Luke, Grandma Marsha and Big Al

Luke and Auntie Bridget the night before the procedures


Just checked in to the hospital


Mommy couldn't stay for the X-Rays because of baby girl Chez
However, Grandma Marsha and Grandma Laura did a great job!

One of our first smiles

Tomorrow

Hoping this finds everyone well and that all you beautiful amazing moms had a wonderful Happy Mothers Day. We have always celebrated Mothers Day with our moms with so much appreciation for all that they have done. This year we deeply reflected how special our Moms are. They have always been there for us, but since the kids were born it has gone to a whole different level. They continuously drop everything and put their lives on hold for us and our sweet children. A week does not go by that they are not there helping us. Their love, support and strength is what not only helps us get through everything it has also taught us how to provide the same to our children. We thank you MOMS for being all that you are and for doing all that you do. We could not do it without you and we love you so very much!

We are still currently in Palo Alto. Last week we were able to get in to see a few more doctors and to run some test.

~As for "Baby Girl Chez" They have confirmed her diagnoses to be Tetralogy of Fallot with Pulmonary Atresia and MAPCAS. The level of severity cannot be determined until she is born. At this time I will continue to be followed down in Orange County by a specialist and then around July 15 we will head up this way (Palo Alto) and wait for our little baby girl to arrive.

~As for Luke we were able to get him in for an MRI on Thursday. It was so heartbreaking to see the emotional scares he has from previous surgeries, he kept saying, "please mommy do not let me have surgery." The older Luke gets the more difficult it is to bring him in to the hospital. As parents we all want to protect our children and keep them from harms way. We would do anything to take away their pain...so going through this as many of you know is so difficult. After he woke up from the anesthesia, the first thing he did was to put his hand on his chest and ask if he had surgery. I told him that he did not and that he was the bravest little guy we know.

MRI results:

The MRI provided us with some valuable information and proved that the Echocardiogram was right on in the diagnosis of Luke's pulmonary valve obstruction and if anything the obstruction is greater than previously thought. Unfortunately, we found that Luke also has narrowing in his Left Pulmonary Artery, it is 80% blocked. Luke has never had this problem before, so we were pretty bummed. It is likely that from his last open heart surgery in September '08, Luke's Left Pulmonary Artery got "kinked" and needs to be corrected. Another piece of information that we received was that Luke's pulmonary valve was not pressed against his sternum, this is valuable because it left open the option to stent Luke's valve via a stent. Once, we received the results we had to decide the best action to take for Luke's heart, this was excruciatingly difficult for us because there was no clear cut way to proceed (open heart or cath.). This is where we had to strongly rely on our faith and trust that the Lord would open the appropriate doors for us. On Friday we met with Dr. Perry an interventional cardiologist here at LPCH (Stanford) and decided that a repair via catheterization would be the best option for Luke.

Tomorrow Luke will have the following procedures while under anesthesia:
-Lung Profusion Test to help obtain more information on the extent of obstruction in Luke's Left Pulmonary Artery
-Endoscopy performed by Dr. Cox for his G.I.
-Catheterization, it is here that they will attempt to fix Luke's obstruction is his Pulmonary Valve and Left Pulmonary Artery.
Total procedure time will be about 4 hours.

Please help us pray tomorrow morning for the following:
That God will place HIS protective hands over Luke. For Luke to do well on his anesthesia. For God to guide the hands of Dr. Perry. For the procedure to go well without complications. That he will not need to go into emergency open heart and that the Catheterization (stenting) will be a success. For God to give Adam, I and our family the peace and comfort in knowing that it is all going to be ok, because HE is in control.

Thank you all so much for all your love, support and most importantly prayers.

We will have a family friend update the website once Luke comes out of his procedure.

All our love,Adam, Terra, Luke, Angel Gracie and baby girl Chez

Trusting God "Even when Life hurts"

Trusting God is actually a title of a book written by Jerry Bridges. I read the book about three years ago and just recently found it. The book talks about:
-God is completely sovereign
-God is infinite in wisdom
-God is perfect in love
Though he brings grief, he will show compassion, so great is his unfailing love. It also gives biblical references to what many people question: If God is both powerful and good, why is there so much suffering, so much pain and so much heartache in the world?
Gods ways are higher than our ways (Isaiah 55:9) God's plan and His ways of working out His plan are frequently beyond our ability to fathom and understand. We must learn to trust even when we don't understand........

Which brings me to our last appointment. We went down to LA on April 8, to see Dr. Mark Skalansky. (Luke's cardiologist and he also specializes in fetal echos) Luke was getting his regular three month check up and I was there for Dr. Skalansky to perform an echo and see if he could better diagnose our baby girls heart condition.

As for our baby girl-At this time Dr. Skalansky feels she has Tetrology of Fallot w/Pulmonary Artersia and MAPCAS. There was much concern as far as the severity, but at this time he felt that we should wait until I reach my 26-28 week mark for a better view. So for myself and bay girl Chez we are currently being seen by a specialist out of Saddle Back Hospital in Laguna Hills and in two weeks we will get an ultrasound with the cardiologist to see if they can further confirm her diagnosis. In the midst of the all the news, one good thing was I was taken off bed rest. Which has been so wonderful!

As for Luke's appointment-Unfortunately we were taken by complete surprise once again. Dr. Skalansky found Luke's valve that was replaced in open heart surgery just 6 months ago is already narrowing and looks to be obstructed. The valve that was put in was suppose to last up to 5-7 years. We were informed that Luke may need to go back into open heart surgery to replace the valve and or we could look into some type of intervention. We have also been struggling with major GI issues with Luke. He has been having extreme stomach pain and is vomiting at least once a day.

There are so many details with Luke and I do not want to loose everyone so at this time this is where we currently are:

1. Adam has consulted with two Dr.'s one in Miami and one in Boston that specialize in intervention and the Melody Valve (which is amazing!) However, the required age and weight are 5 yrs 45lbs. Luke is 4 and 31lbs. Luke would be the smallest case in the US at this time.
2. We have received an opinion from CHLA
3. We are currently in Palo Alto at Lucielle Packards Childrens Hospital-We are meeting with Dr. Frank Hanley (surgeon) to obtain his opinion as well.
-In regards to Luke's GI issues those are extremely important as well. Yesterday we met with a wonderful GI Doctor (Dr. Ken Cox at Stanford/LPCH) and he has been extremely helpful in guiding us with the correct testing we will need for Luke and we are also considering a few meds to help with his reflux and esophagitis.

Highlight of our visit-We were able to see precious Moriah and our dearest friends Justin and Victoria Nelson. Please check out there blog http://www.momentswithmoriah.blogspot.com/and help us with many others to continue to pray for their family.

The plan at this time is to get Luke in for an MRI to see if there is even a possibility that his valve can be saved through intervention.
The most frustrating part through this whole situation is everyone has a different approach and opinion as to what should be done. I have shared this with a few of you, but our plan is to gather all our information and PRAY that God will open and close the necessary doors.

After the passing of our sweet Gracie we are so frightened at having to make a decision and it is extremely painful and difficult. The most comforting part is that if we stay focused on leaving it in Gods hands and trusting in him we know the correct decision will be made. Nothing goes on beyone HIS control.

When we heard the news about baby girl Chez we were devastated....when we found out about Luke's heart we fell into the same spot once again. Our hearts are heavy with all that continues to come our way. BUT one thing that never changes and that is we are still trusting in God "even though life hurts right now" Don't get me wrong, there are times when I am very weak and feel so discouraged and upset that we cannot seem to escape these great trials, but I don't let myself stay in that place too long. We keep our focus on God and let him carry us through each day. We continue to do our very best to live for the day and to enjoy the present. Most importantly we try not to worry about tomorrow for the day has enough to handle on it's own. Through all this we make sure to enjoy each day together and are trying our best to fit in "fun days" as we know the road ahead may be a little bumpy.
I know I always end on the same note, but I have to. THANK YOU each and everyone of you who continues to support our family. God has used all of you to lift us up and trust me you do! Your prayers, visits, meals :) emails, and calls are one of our special blessings. We love you all and know that God has given each one of you to us to help us during this time! I've always shared that God never promised there would not be trials and suffering HE did promise we would not walk through it alone!

We will be keeping everyone updated within a the next couple of weeks.
All our love,
Terra, Adam, Luke, Angel Gracie and baby girl chez