Sleeping

The plan is to keep him sleeping through the night, keep his vitals
where they need to be, and allow the excess blood and fluids to drain.
Here's a pic.
Don't scroll down if you are feint hearted.

Recovery

The next two days are critical. Please pray for a great recovery. The
surgery went fine.

Sent from my iPhone

Caleb is Being Operated

Caleb is in surgery. He should be out around 3:30. We'll get hourly
updates. The people here at the hospital are amazing.

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Getting Ready

Meeting Nurses and Wearing Cool PJ's

We're Here...

Consent forms signed, we are waiting to be called...

Role Reversal

Caleb plays doctor with "Shadow", a gift from Angels Pediatric Heart
House. It's a "buddy" that has had heart surgery. Caleb has been the
doctor taking care of him!

What Happens When You Ask Caleb To Smile

This pic was taken yesterday during our day at Sesame Place. Today
we're going to go do something fun since his surgery was postponed
until Friday due to an emergency with another baby.

Our Verse For Thursday's Events

A friend of ours shared this verse with us and it really brought some encouragement. You can click below to read it.

http://youversion.com/reader.php?startverse=2Chr.20.17&version=esv

We went to Calvary Chapel Philadelphia tonight. I love listening to Pastor Joe teach the Bible. They prayed for Caleb, and we hooked up with one of the assistant pastors to keep on touch with during our time here.

I love the family of God

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Playing at Sesame Place

Update -Tuesday PM

Janet is feeling pretty sick. It has to do with her pregnancy. We'll trust God's timing on that one.

Pat is adjusting to living in a hotel room/hospital room for thirty days. We love the facility, we are super-duper thankful and are being well taken care of, but there is nothing like home. We knew this would be a challenge so we will trust that the Lord will get us through. This is one of those situations that having been on a lot of missions trips helps.

Caleb did great today - totally cooperative with all the nurses/techs, etc. Like, he didn't even cry or scream or anything when they poked him with a needle to draw blood! That's my boy! He said it didn't even hurt. I was shocked, surprised, and so proud of him. He's my hero!

Genesis is being a trooper. Both kids are doing great, all things considered. They have crafts at the RMH (Ronald McDonald House). Last night they made a bird house, tonight they made door hangers.

So, please pray for
1) strength and wisdom. There's always decisions to be made and weakness to feel.
2) successful surgery and speedy recovery. This is huge. The trip could be a lot shorter if Caleb recovers speedily.
3) health for everyone. Hopefully, Janet being sick won't spread to Genesis and Pat.
4) a little sanity would be nice once in awhile, too!!!

We should get a call sometime tomorrow afternoon telling us what time the surgery will be. The pre/surgery/post will be about 3 1/2 hours. The longest part is cutting through all the scar tissue.

Tomorrow we hope to go to Sesame Place for a day of fun with Big Bird. Hopefully, and prayerfully, none of us will behave like Oscar!!

We are also hoping to see our friends Nilson and Betty Hernandez who flew up today to spend a couple weeks here with us.


Pat

Waiting for Pre-Op....

Caleb Playing Train @ the Ronald McDonald House

Hanging Out In The Cockpit!

Picture with the Pilots!

Waiting to Board

Fun Bath

Travel Update

We secured our airplane tickets. We'll be landing in Philly on Monday, June 8. On Tuesday, we have Caleb's pre-op appointment. Wednesday, we plan on having a fun day by driving 30 miles north to Sesame Place! Wednesday night, we're hoping to visit Calvary Chapel Philadelphia. Thursday is the big day for surgery, still not sure what time it will be. We won't know until a couple days before.

We are also super thankful that God has led our friends Betty and Nilson Hernandez to come with us for a week or two. Their help watching our daughter during the surgery will be indespensible.

Thanks for your prayers!

Facebook: Caleb's Prayer Team Tops 411 Members!

Caleb has a team of prayer warriors armed and ready to go. If you'd like to join the Facebook group, you can click here.

We're overwhelmed at the love and interest that you all have shown. Please continue to pray for him and a successful surgery and complete recovery!

HLHS Averted by In Utero Procedure!

We first were diagnosed with Caleb's heart condition when we lived in Toronto. They have a wonderful and very huge hospital devoted to children called Toronto Sick Kids. Recently, I ran across this story of a baby who underwent a procedure at this hospital while still in his mother's womb! It was successful! The baby, had they not done this procedure, would have had to have the same three surgeries as Caleb.

Here's the text from the article and a link to the online version.

(Toronto) – In a Canadian first, doctors at The Hospital for Sick Children (SickKids) and Mount Sinai Hospital successfully performed a lifesaving heart intervention on a baby in utero. A team of doctors, including Dr. Edgar Jaeggi, Head of the Fetal Cardiac Program at SickKids, Dr. Greg Ryan, Head of the Fetal Medicine Unit at Mount Sinai and Dr. Lee Benson, Director of the Cardiac Diagnostic and Interventional Unit at SickKids, expanded the baby’s aortic valve using a balloon catheter inserted through the mother’s abdomen while the baby was still in her womb to reverse the baby’s heart failure before birth. This allowed the baby to remain safely in utero for a crucial extra month.

"The fetal intervention was minimally invasive for the mother and lifesaving for the baby," says Ryan. "Our ability to repair the aortic valve at 31 weeks gestation allowed the fetus to grow and thrive for four more weeks in the mother's uterus, resulting in a bigger, healthier baby at birth with decreased likelihood of additional health risks. Had the baby been delivered at 31 weeks, the heart’s left ventricle could not have been saved. The collaboration of expertise between SickKids and Mount Sinai saved this infant's life."

Thirty weeks into her pregnancy, Vicki McKenzie, a mother of two from the Ottawa area, had an ultrasound indicating her baby, Océane, had a heart condition called Critical Aortic Stenosis, meaning there was severe narrowing of the main outlet valve of the left ventricle. She was immediately referred to Toronto, where doctors at SickKids and Mount Sinai offered her an experimental procedure.

The procedure is called Balloon Dilation of Critical Aortic Stenosis in the Fetus. Under continuous ultrasound guidance, doctors inserted a needle into the left ventricle of the baby’s heart through McKenzie’s abdomen; a guide wire was passed through the narrowed valve so the special balloon would open the valve leading to the baby’s aorta. In theory it was simple, but in reality it was an innovative and risky procedure. It has been tried in only a few centres worldwide; this was the first successful such procedure in Canada.

“It can only be offered to a few babies in utero who are detected at the correct stage and when their aorta hasn’t yet narrowed too much. This baby came to us at just the right time,” says Jaeggi.

Untreated, the condition would inevitably lead to a lifelong condition called Hypoplastic Left Heart Syndrome (HLHS). Children with HLHS typically need to undergo at least three major heart surgeries. Most children would not be expected to live a normal lifespan; the 10-year survival rate is only 65 per cent. This experimental intervention aims to repair the heart early, allowing it to recover its normal function to avoid risky surgeries after birth and hopefully lead to a longer and better quality of life.

McKenzie, who was prepared for anything, agreed to the intervention. Océane stayed in her mother’s womb for a full month following the procedure, until the team determined that she could be safely delivered on April 15.

Doctors anticipated that as soon as she was born, the baby would need to undergo another procedure to further open her aortic valve. Within an hour of her birth at Mount Sinai, Océane was stabilized and transported by Mount Sinai’s neonatal team to the Cardiac Diagnostic & Interventional Unit at SickKids, where she underwent another procedure. A third procedure followed a few weeks later.

“They have saved my daughter’s life. Having access to the expertise at these two hospitals was a comfort. I could confidently have my baby at Mount Sinai and know that she would immediately receive the urgent care she needed across the street at SickKids,” says McKenzie.

“The intervention recovered Océane’s ventrical function completely. It is operating at a normal level now. We hope this successful collaboration opens the door to giving other babies a healthier start in life,” says Jaeggi.

The Mitchell Goldhar Cardiac Diagnostic & Interventional Unit at SickKids enables Canada’s largest paediatric interventional catheterization program to develop innovations in minimally invasive alternatives to open-heart surgery. The unit, opened in 2007, combines the latest technology to diagnose and treat children with congenital heart disease using minimally invasive procedures that can reduce or eliminate the need for open-heart surgery.

The Fetal Medicine Program and Perinatal Program at Mount Sinai Hospital are among the largest in North America, and receive referrals from all across Canada for a wide range of fetal problems needing complex interventions.

About SickKids
The Hospital for Sick Children (SickKids), affiliated with the University of Toronto, is Canada’s most research-intensive hospital and the largest centre dedicated to improving children’s health in the country. As innovators in child health, SickKids improves the health of children by integrating care, research and teaching. Our mission is to provide the best in complex and specialized care by creating scientific and clinical advancements, sharing our knowledge and expertise and championing the development of an accessible, comprehensive and sustainable child health system. For more information, please visit www.sickkids.ca. SickKids is committed to healthier children for a better world.

About Mount Sinai Hospital
Mount Sinai Hospital is an internationally recognized, 472-bed acute care academic health sciences centre affiliated with the University of Toronto. It is known for excellence in the provision of compassionate patient care, innovative education, and leading-edge research. Mount Sinai’s Centres of Excellence include the Lawrence and Frances Centre for Women's and Infants' Health; Christopher Sharp Centre for Surgery and Oncology; Acute and Chronic Medicine; Laboratory Medicine and Infection Control, and the Samuel Lunenfeld Research Institute. For more information about Mount Sinai Hospital, please visit us online at www.mountsinai.on.ca.

30 Days and Counting: Prayer Request

Hey everyone,
Caleb's surgery is exactly one month from today. During this week, we hope to finalize travel and lodging plans, as his surgery will be at Children's Hospital of Philadelphia. So please pray for God's leading as we start working on the details of this trip. One of our goals is to make it fun for the kids, so we hope to go up a couple days early and hang out. Thanks!

Join Facebook Prayer Team for Caleb's Upcoming Surgery

Click here to join Caleb's Facebook Prayer Team.

Save the Date!

June 11 is the date for Caleb's next surgery.

We are in planning mode, working out all the details of our
forthcoming trip.

Sent from my iPhone

Today

Last week we were told by CHOP that they will inform us today of the
date for Caleb's operation. They want it be at a time when both of his
doctors, the surgeon and the intensivist are in town.

So we should know soon!

Sent from my iPhone

Pictures from Philly

Trip to Philly

Philly Summary

Is the search over? Lord, is this the place where our son should have his next surgery? We were both asking ourselves the same question. We have been able to take Caleb to The Hospital for Sick Children in Toronto, Miami Children's Hospital, Children's Hospital in Boston and recently The Children's Hospital of Philadelphia (CHOP). Taking our son to Boston and Philly, which are the top two cardiac programs in the nation, was a fleeting thought since our state insurance would not cover such medical ventures. We are still so amazed at how God granted our unspoken desire so naturally and easily. The bible says the Lord knows our needs even before we ask (Mat 6:8).

So far CHOP has offered us the most information, research, and opportunity for Caleb and our family. We still don't want to rely on our understanding, but on God's leading. This is where there is peace even in the midst of difficulty. During our visit we got some of our unanswered questions answered. Why is his head so large? Why the developmental delay and complications after the 1st surgery? As well as some answers about life after the Fontan.

The Fontan is the next surgery Caleb will be having. After his cardiac echo (ultrasound of the heart), vital signs, EKG, meeting with Dr. Spray (the chief cardiac surgean at CHOP) and Dr. Wernovsky (one of the top cardiologists at CHOP) we were assured that Caleb is a good candidate for the Fontan circulation. He definitely needs the operation and it needs to be done soon while he is strong and stable. Right now this is technically considered an elective surgery, but if he does not have the surgery soon, his oxygen saturations will continue to decrease and he will become very sick.

So what is the Fontan? It is the last stage in a series of three repairs done to children with one or more congenital heart defects that cannot be corrected. Caleb has seven heart defects and two of them cannot be corrected. We say that he has half a heart. He is missing the right ventricle and right valve called the Tricuspid Valve. Consequently the right side of the heart is basically missing or useless. The Fontan is achieved after three stages of surgery. They have to do it in three steps because babies have high pressures in the lungs when they are born. The Fontan circulation does not work when the pressure in the lungs is high. The first surgery in the palliation involves opening up the upper heart wall (atrial septum) and putting a shunt from a part of the aorta to the right pulmonary artery which replaces the Patent Ductus Arteriosis (a connection between pulmonary artery and aorta that all babies use in the womb and are born with but closes quickly after birth).

The next surgery called the Glenn or hemi-Fontan is done at around six months when the pressures in the lungs decrease and the babies have grown into or out of the shunt. At this point, they disconnect the shunt from the first surgery. They also disconnect the superior vena cava from the right atrium of the heart and connect it to the right pulmonary artery. The superior vena cava carries all the blue blood from the body to the right atrium so it can go to the lungs via the pulmonary artery with the pumping from the right ventricle. This is what Caleb is missing. They also disconnect the main pulmonary artery. This is an easy surgery to recover from because the blood flow goes with gravity since it falls from the head to the chest area.

When kids are about Caleb's current age, about 3 yrs old, they complete the Fontan circulation by disconnecting the inferior vena cave (blood flow from the lower body, similar to superior vena cava from used in Glenn sugery) from the right atrium of the heart, extending it with a tube and connecting it to the bottom of the right pulmonary artery branch. Because the blood from the lower part of the body travels against gravity and depends on the pumping of both ventricles of the heart, the recovery is long and includes complications with fluid building up around the lungs (plural effusions). Because Caleb's body has developed many extra veins (collateral veins) to try to compensate for his lack of oxygen, he is at higher risk for the effusions. This is a minus for him. But thankfully it is the only minus he has.

We asked the Nurse Practitioner who is the liason for out of town patients, Katie Dodds, to submit Caleb for surgery scheduling for June. We are waiting for the appt. date and will post again as soon as we have it.

We would also ask that if you are reading this post that you really begin (or continue) praying for Caleb and us, as we have a renewed sense of the risks involved in this surgery.

Thank you!!

Great Day

We had a great day yesterday. Janet will be telling you all about it I'm a future post. Last night we worshiped at CC Philly. Afterwards Pastor Joe Focht prayed for Caleb. It was great to be at the service and meet our brothers and sisters in Philadelphia. I never cease to be amazed at the fellowship of believers.

At the Hospital

After filling out all the paperwork, we are now in echo exam room #2 waiting for the tech. She is looking for Caleb's favorite movie, Cars, so he can watch Lightning McQueen during the test.

A Rainy Day in Philly

After getting checked in to the wonderful Ronald McDonald House in Camden, NJ, and grabbing some lunch, we decided to ride the subway and go see the Liberty Bell. Thanks to the rain, lines were virtually non-existent. While we were out we got a call from one if the doctors at CHOPS saying he needed Caleb's post op notes.

Oh no! We thought we had sent these months ago. It was already after 5:00pm. Our contact at MCH had already left. We sent her an email and then set out on our quest for a Philly cheese steak. Five blocks later we got to our destination: Jim's Steaks. We told the guy we had walked five blocks in the rain and we were from out of town, could he please hook us up with whatever the locals get.

It was yummy!

Today, we got word that the reports we need would be faxed.

Now, we are off the breakfast and then on to the hospital.

Arrived

"Did you get the bag?" "No, you had it, didn't you take it on the plane?"

No way! We didn't really leave our suitcase at the gate in Miami, did we? After all, we carefully crafted how we would journey through the airport with two strollers, two car seats, one carry-on suitcase, one laptop bag, one backpack, one Barbie backpack, and a couple jackets. Now we got off the plane in Philadelphia, and our hearts sank at the thought of having to replace all our clothes and toiletries.

We called MIA lost and found. Nothing. We called American Airlines lost and found. Nope. We called Gate D29. No answer. We called a friend that works at the airport. He said that he would check of our later that afternoon. Ok. That's about all we can do. Let's just plan for living in Philly for three days without our bag.

Well, before we leave the airport for the rental car agency, let's go talk to the local Philly AA baggage people and see if they can help us. Maybe they can call someone in Miami. We got to their office and guess what we saw? The missing suitcase!

Evidently, as we were gate checking the strollers, we left the suitcase right outside the plane. Someone must have put it on the plane at the last minute. There it was. Thank you Lord!


We are staying at the Ronald McDonald house in Camden, NJ. This place is awesome. We'll try to post pics later.

On the Plane!

We are sitting on our American Airlines jet. We've got our seat belts fastened. We are ready for take off!
Last night, we had quite an adventure as we found out that Philadelphia had received the wrong test results from Miami Children's.. It was after business hours; medical records wasn't answering the phone. So we drove over to the hospital to see I we could find someone to help us. We needed a cd of Caleb's caths.

After knocking on some doors that appeared to be closed, and speaking with some very helpful people, we finally were assured that the cd could be sent overnight today.

So hats off to Miami Children's for going out of there way to help us!

10, 9, 8, 7, 6.....

We leave tomorrow morning for Philadelphia. Our plane leaves very early.

Here's our plan:

Arrive in Philly around 9:30. Get the rental van. Go have fun.

We're thinking about visiting the Please Touch Museum. Grabbing a Philly Cheese Steak at Pat's King of Steaks.

Wednesday is the medical day. We'll be at the hospital most of the day meeting doctors and getting a tour of the hospital. Caleb's echo is at 1:00pm.

Wednesday evening we plan on attending Calvary Chapel Philadelphia.

Thursday we may go see the Liberty Bell or the Franklin Institute.

Thanks for your prayers.

Planning: Full Steam Ahead

We leave in less than a week to Philadelphia. It will be our first time at CHOPS. We're looking forward to it.

We were thinking about driving to New York on Tuesday from Philly, but it might be too much for such a short trip. While we are in Philly, we are hoping to stay at the Ronald McDonald House.

We eagerly ask and thank you for your prayers.

Halter Results

A couple weeks ago, Caleb had to wear a halter. This was a device that measured the function and beating of his heart over an entire twenty-four hour period. The results of that test is that he has "sinus taccycardia". The folks at CHOPS tell us that it is normal. Here is an article we found here

that describes this condition:

Sinus tachycardia
Sinus tachycardia is defined as sinus rhythm with a rate of greater than 100 beats/min. To be certain that sinus tachycardia is the etiology for a supraventricular tachycardia (tachycardia with its origin in the AV junction, atria or SA node), one must identify a constant single P wave for every QRS complex. Sinus tachycardia usually represents a physiologic response to fever, intravascular volume depletion, hypermetabolism, anxiety or the administration of pharmacologic agents that dramatically increase sinus rate, such as catecholamines. Sinus tachycardia may also be a response to severe emotional distress, fright and strenuous exercise. Other causes may include a response to anemia, CHF, hemorrhage, extensive heart muscle damage associated with a reduction in cardiac output and pulmonary embolism. Physiologically, sinus tachycardia results from either vagal withdrawal and/or endogenous release of catecholamines.

One should not treat sinus tachycardia per se, but instead should be concerned with the reasons for its development. Obviously, if intravascular volume depletion, fright, fever or sepsis is responsible for sinus tachycardia, the preferred approach is to identify the etiology and treat it, expecting the sinus tachycardia to respond to treatment of the basic abnormality. Alternatively if the sinus tachycardia is due to extensive heart muscle damage resulting from an acute MI or severe CHF, efforts must be made to support the pump function of the heart rather than to potentially depress it further with certain pharmacologic interventions. Sinus tachycardia is often an early warning sign of some altered physiologic state that should itself be identified and corrected.

Never "treat" sinus tachycardia: treat the cause of sinus tachycardia.

Countdown to Philly: 13 Days

We leave for CHOPS in thirteen days. Next Wednesday, we plan on having our pastors pray for Caleb after the service in obedience to James 6:14, "Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord."

It will be a great teaching moment for Caleb, giving us an opportunity to explain to him about prayer and healing and trusting the Lord.

New Link

Check out Angel's Pediatric Heart House, one of the organizations that exists to help families with children with CHD.

Sonia Perez, the founder, has a wonderful story. We have been blessed by their existence.

Correction

Of course, my wife is right. Our first plane trip as a family was to the DR a couple years ago!

Departure Date

All eyes are on April 15. While the rest of America will be scrambling to finish their taxes, we will be on a plane to Philadelphia to pay a visit to CHOPS (Children's Hospital of Philadelphia). We'll only be there three days. During that time Caleb will have an echo and we will tour the hospital and meet the doctors.

We're not fearful or nervous. The Lord has given us a tremendous peace and a church family that lifts us up in prayer.

This will be the first time that our whole family has ridden a plane. Should be fun!

No, It's Not An iPod!

This is Caleb with a halter. It is like a 24 hour EKG. The results of this test will be sent to CHOPS where they will determine if Caleb will need to wired for a pace maker.

Check out Caleb's Japanese Site!

You gotta check this out: click here.

Rash

Caleb's been eating a little funny, almost like he is struggling with reflux. He also has a cough. Last night, Janet noticed a rash on his body.

Looks like it's time for a doctor's visit.

He'll also be wearing a halter for about a week. The halter will monitor all things cardiac so the doctors in Philadelphia will have more information about his heart. The halter will be "installed" at his cardiologists office the first week of April.

We're hoping all you prayer warriors are starting your engines!

We're Going To Japan (sort of)

We are amazed at how God has used our little blog about Caleb's heart condition.

We recently were approached by a lady at our church who has a Internet ministry. She asked if she could translate Caleb's site into Japanese as a ministry to parents in Japan who have children with CHD. We will keep you posted as this becomes reality.

We are excited about how the Lord will continue to use Caleb's life here and overseas.

Ribs Anyone?

Three years ago, we wouldn't have believed. For those who have been tracking with us, you know that one of the most difficult struggles we've had with Caleb is his severe feeding disorder. MAJOR effort just to get him to drink milk out of a bottle. He had a feeding tube up his nose for months. He almost had a G-tube installed in his stomach.

Well, Friday night we went to Flannigan's with the kids. Caleb ate almost half a rack of ribs! We were amazed. He loves to eat. I can tell he's going to be a big item on our food budget in a few years!

"We give thanks to You, O God, we give thanks! For your wondrous works declare that Your name is near." Psalm 75:1

On To Philly

We will be going to Philadelphia on April 14 to have Caleb evaluated by Children's Hospital of Philadelphia. They specialize in single ventricle patients. He is due for his third major surgery, the Fontan operation, sometime in the next several months.

We're looking forward to our trip and seeing it all come together.

Merry Christmas

Caleb is out of the hospital. Doctor's gave him a good report. Pretty smooth stay overall incluing a visit from Santa!

Cath Completed

We are waiting to see Caleb. His cath is over. Now the challenge is for him to remain still for six hours. Anyone that knows Caleb knows that this is easier said then done. The scripture that comes to mind is "Be still and know that I am God".

Prayer Request

It was rough putting Caleb "to sleep" for the cath. He's always ha a high tolerance for medicine, so he needs a strong dose. He went down with a fight, screaming all the way. Please pray for him that when he wakes up he will be kind and appreciative to the doctors and nurses. A lot to ask, we know. We want Caleb to have the peace of the Lord.

Caleb in Pre-op

Caleb is with Mommy in pre-op. He'll be undergoing his cath as soon as he goes to sleep. Genesis is having fun with Daddy drinking Starbucks and exploring all the cool play areas at the hospital.

Almost Done With Day One

Testing is done. We saw the cardiac units. Now we are waiting to meet some doctors and then we will go play in the snow!

Progress Report

Caleb is now undergoing an echo, which is a sonogram of the heart.. He's had a chest x-ray, vitals, and blood work. He's doing great, having fun - except when they drew blood!

At the Hospital

We are at the hospital. Caleb has been registered and we are waiting for him to have a chest x-ray. One of many tests today.

Arrival

Thankfully, we arrived safely late last night at our friends house about twenty miles west of Boston. We spent the day today hanging out and relaxing.

Tomorrow we will be at the hospital at 7:00am when Caleb will begin several tests in preparation for his cath on the 24th. We are looking forward to meeting Caleb's surgeon and learning about the hospital.

Thanks for your prayers.

On the Road

We are officially Boston bound! We just stopped for breakfast at Cracker Barrel in Titusville. We hope to be in Boston Sunday night. Thank you so much for your prayers!

Boston Schedule

We need to be at the hospital around 7:00am for some tests on December 23. On that day, Caleb will receive a chest x-ray, EKG, echo, and blood work. We'll also have a meeting with the physicians about his situation. This should all take around five hours.

The next day, Christmas Eve, Caleb will be admitted around 7:30am. He will undergo a cardiac catheterization. He will spend the night in the hospital and if all goes well, he will be released around noon on Christmas Day.

While in Boston, we plan on having a great time, enjoying a white Christmas. We will be staying with our good friends Christian and Dulce. We also hope to visit Calvary Chapel which is very close to the hospital.

Caleb

Mission Accomplished!

Caleb did great. Here's some photos for you:
BEFORE and AFTER

Tooth Extraction

Caleb will be getting one of his front teeth extracted on Monday because of an infection.

Please keep him in prayer!

Boston for Christmas

Attention all family and friends! For those who have prayed for Caleb and our family during his hospital stays of years past, we are asking for your prayer support again.

When Caleb was diagnosed with Tricuspid Atresia, it was explained to us that it would be necessary for him to have three surgeries. Three years later: two down, one to go. He is ready now for his final surgery, the Fontan operation. This is the "big" one.
We have decided to have him evaluated at Children's Hospital of Boston before we schedule this final surgery. This will take place on December 24 of this year.
Please keep our family in your prayers as we seek to do our due diligence in helping Caleb to have a healthy life.
We are also looking forward to seeing what God will do in us and through us as we take this little venture in faith.

Brain Atrophy

As we were getting some tests done to get ready for another heart surgery in about a year, an MRI revealed Caleb's brain was a bit atrophied. Additionally, there is a small amount of fluid on the brain.

Well, you wouldn't know it by his actions!

He turns three in a couple weeks.

We have an appointment with a neurologist soon.

Thanks for your prayers.

Doing Great

We hardly ever post on this blog any more! That's because we're too busy trying to catch up with Caleb.

Merry Christmas to All!

Tooth Follow-Up

We are pleased to announce that Caleb did not have to have his tooth extracted! We sought a second opinion and they confirmed that it was not going to be necessary.

Miami Children's Hospital Poster Boy

Click above to check out Caleb's picture on Miami Children's Hospital Web Site.

Tooth

Haven't posted in awhile. Here's what's up. Caleb has to get one of his front teeth extracted. We'll post more later.

Birthday Pix

Birthday Thank You Video

G.I. Joe

We have far too many easily accessible girl toys laying around our house. The other day Caleb came running (he sort of runs) into the kitchen saying loudly, "Dada, dada." I turned around to my dismay seeing him, again, playing with a pink princess tea pot and two baby blue spoons. As any good father would do, I confiscated the teapot, gently rebuked him for playing with these type of toys, and went out to the car where just hours earlier my sensitive wife had stocked up some thirty G.I. Joe's she purchased at a garage sale.

Grabbing three of the manliest warrior-types I could find, I brought them inside, showed them to Caleb, made some grunting man sounds, and lovingly put them into his hands. He tried to repeat the man sounds and then took too G.I. Joes, placed their faces next to each other and MADE A KISSING SOUND!!!!!!

So we have some work to do....


On another note, a couple weeks ago Caleb and Genesis were involved in a beach photo shoot for Miami Children's Hospital. The pictures they took will be used in all hospital promo stuff: website, brochures, posters, etc.

Graduation!

Sara, Caleb's physical therapist who has been seeing Caleb since he was born, recently decided to graduate Caleb out of physical therapy! This is great news. It means that he is demonstrating age appropriate physical skills.

We will miss Sara; she has been absolutely wonderful. We still remember the first time we met her. It has been evident all along how much she loves Caleb, and all her patients.

Approaching Two

Hard to believe we're getting close to two years of Caleb's life! What a blessing this little guy is! He is eating well, a bit picky. We've seen much of his eating problem had to do with his will. A little discipline went a long way!

He's growing fast. The GI doctor is happy with how he is doing. We'll be taking him to the cardiologist in a month or so for a routine check up.

I've attached a recent picture from the Magic Kingdom of Caleb with mommy!

Thank you all!

Doing Good

Caleb's actually doing quite well. Today is Tuesday and on every Tuesday Caleb spends a couple hours at Miami Children's Hospital with his friends Sara (physical therapist), Meredith (occupational therapist), and Laura (speech therapist).

All of them think Caleb is doing great. "He's our little star. We're so proud of him."

He is behind on speech but we are confident that he'll catch up.

Thank you, Jesus, for doing a good work in Caleb.

Caleb Not Eating

Caleb's home from the hospital after his dental surgery. He's not eating well AT ALL. Please pray that he starts eating better. His eating doesn't have to do with his dental stuff; he was having this problem before.

Anyway, it's enough to drive you crazy, especially since he was eating so good before.

It's not that he's picky or just eating a little - he's really not eating for real.

Thanks for your prayers.

Dental Work Done

The dentist plugged four cavities and crowned several of his teeth. The doctor explained that one of the reasons he has weak teeth is because of the lower levels of oxygen.

He'll be at the hospital for awhile recovering. We will either go home tonight or tomorrow morning.

Operating Room Tomorrow

At 6:00am Tuesday morning, Caleb will be at Miami Children's Hospital one more time. This time, it will be dental work that will take place. Caleb has a tooth that is decaying, a cavity, and hypoplasia (teeth that did not develop properly, evidently he has little holes in his teeth).

So they will take x-rays first. Then they will cap all his teeth so that he will be protected from future cavities and decay. Of course they will fix anything else that they see wrong.

Obviously, Caleb will be under general anesthesia, so recovery and eating are always an adventure.

Thanks for going on this journey with us through your prayers. Please continue to accompany us!

Three Stiches

So Friday night at church, Caleb stumbled and knocked his head on the tile floor. So we had family night at Miami Children's Hospital. We've never seen that place so crowded. Thanks to Caleb's heart condition, we always have short waits at the ER. They take us in right away. That was good.

The cut was deep and wide enough to warrant three stiches. Caleb is doing great now. In fact, he just made Genesis cry, so I gotta go. Bye....

Dentist Visit

Well, Caleb has been just doing great.

He does have a cavity, so he'll be going to the dentist tommorrow. Of course since he's a cardiac kid, it's a bit more involved than your typical visit. He has to get evaluated, they need to involve the anesthesiology team, etc.

We are totally blessed, though, with our kids.

So many people are concerned and are interested and are praying. Thank you for that!

Home and Doing Well

Caleb has been home for awhile now. The first couple days home from the hospital were a little rough. He had a tough cough, scabs from the opening the had to make, stick tape residue all over his body, not eating really well.

But now he's doing good. He's walking alot, playing, eating.

We continue to hear of families who have similar situations and we are thankful that we can go and spend some time with them, often talking about spiritual issues, praying together, or sharing some scripture.

We also continue to be active at Miami Children's Hospital. It's a way for us to get to know people and to be part of what is happening there.

Pneumonia?

Looks like Caleb might have pneumonia. He's getting a chest x-ray today. He's been pretty lethargic, not eating, developed a rash. So we will see...

Rough Night

Caleb stayed at the hospital last night with Janet. His eyes are pretty swollen. Not sure why. He also coughed quite a bit last night and vomitted earlier. We'll see what the doctors say this morning.

Genesis paid a little visit this morning but mommy and brother were sleeping so it was just quiet kisses.

Good News!

Success! Everything went great. Dr. Zahn is very pleased with how Caleb looks. He plugged two large collateral veins. He said we may be able to go home tonight if all goes well.

Now comes recovery. So far we have learned that Mr. Caleb does not like hospitals very much. He hates things attached to him and people poking him. He can be quite fiesty at times.

Thank you for your prayers. We are grateful for good news.

Please Pray

Please lift up the family of Baby Y. They have been given very bad news. This is a family that we have been able to know for several months. We met them at the Christmas dinner that was put together by Calvary Kendall.

We Have Lift-Off

Caleb is now undergoing his cath. It's good to see all the doctors and nurses that know us and know him. They are such nice people. They're good at what they do, as well.

The procedure should take approximately three hours. It's mostly diagnostic. Dr. Zahn believes that he won't have to do any major procedures, but is ready nonetheless. Caleb may need a stent; but we'll find out.

We'll post updates as we are able.

Cath Tomorrow

We will be at the hospital at 6:00am. Dr. Zahn will perform the procedure at 7:30am.
Thanks for your prayers.

Cath Rescheduled for March 6th

Caleb will have his cath on Tuesday, March 6th. We'll be at the hospital at 6am and we'll post updates. He still has cold symptoms, but we are really hoping that he will get better so he can have the cath and not have to reschedule. We know the Lord's timing is perfect. May his will be done!

Cath Postponed

Caleb's running a 100.9 fever so they can't do the cath. It has been postponed until early March. Please stay tuned for continued updates. Thanks for your interest in our lives and for your prayers.

Fever?

Caleb is going to the pediatrician today. If he has a fever, the cath will be postponed. We will know this afternoon.

Cath Tommorrow

We will check into Miami Children's Hospital at 6:00am. Caleb has been a little sick, so we are checking with them today to see if it's ok to go ahead with the cath. After the cath, Caleb will be in the CICU. If all goes well we will be able to go home on Friday.

Caleb is a bit older and way more active than he was during his previous hospital stays. So one concern, is keeping him interested, contained, still, etc. Don't think he's going to like being confined to a little bed and hooked up to machines!

Unexpected News

Caleb is 18 months and seems to be doing well. He's on a regular diet now, eating solid foods and drinking regular milk. He was weaned off one of his reflux medicines; he's getting 7 therapy sessions a week instead of 9; he walks all over the place with his push toy and is starting to stand and take a few steps on his own. He's communicating a bit better and he loves to play, climb and explore everything.

All these signs show that his heart must be working well, right? We expected good reports from his cardiology check-up and a "see you in 4 months." But the echo (an ultrasoud of the heart) showed that Caleb has another heart defect called a supra valvar membrane.

My heart sunk.

"...but this one is fixable." My heart sunk deeper.

I know what "fixable" means. It means opening the heart...again.

Basically he has a tissue growing on top of his mitral valve preventing smooth flow of blood out of the left atrium and into the left ventricle. This can cause a back-up and pressure to build up in the lungs and other complications especially since that is the only part of his heart that works.

The doctors were aware of this defect since birth. We never found out about it because it was not "significant", but now it seems to be growing as he grows. The only way to get rid of it is via open heart surgery which means that Caleb may have to have two more heart surgeries instead on one. Dr. Mas also noticed that the part of his pulmonary artery that was balloned during his last cath may have collapsed again. He also has a significant amount of collateral veins that his body has produced to compensate for his low blood oxygen levels but they are competing with the blood flow from his last bypass surgery. One of these or all of them may be the reason why he wakes up with swelling in his face and his arms appear to be puffy.

Caleb will be having a cardiac catherization this Thursday Feb. 5th where they'll do some more investigation and some intervention if necessary and possible. Please pray for Caleb and for Dr. Zahn who will be doing the cath. We are asking God that they can fix any problems via cath so Caleb won't need any extra surgeries. Thanks for helping us bear our burdens =)

Caleb The Eater

Caleb is eating great. Miraculously great, actually. He's getting better every day. We are thankful to the Lord for what He is doing in Caleb's life.

Christmas Dinner at MCH

What a great time we had at the Christmas Dinner at Miami Children's Hospital! Our friends from Calvary Chapel did an amazing job with the food, carolling, etc. I had some great conversations with parents of babies who are going through similar situations that we went through with Caleb.

It was great to see Dr. Burke again and some members from his surgical team. They were there because they got a call for an emergency surgery. Janet and I met the family of the little girl who was getting operated. We were able to show them pictures of Caleb when he was in the hospital as well as recent pictures. It was good to tell them our story and hear theirs.

Hopefully, we'll be able to see the people we met tonight again.

Doctor's Visit Results

Caleb did great! He has gained enough weight to secure a spot in the 25th percentile. This is a marked improvement over his steady place hovering close to the 10th percentile. His head growth is also leveling off - so his body is catching up to his head. He has also had a diet change and now is eating yogurt through a straw, which is going well.

Caleb's Doing Great

It's been a long time since we've posted. Caleb is doing good. He climbs, he's got a cute smile and laugh. Tommorrow he goes to see his GI doctor. He did have a couple episodes of vomitting today. He's still on quite a bit of medicine, so as he grows, we're hoping that can all be weaned off.

We are looking forward to the Heart 4 Heart Foundation event later this year. Here's some information for you if you're interested. This is the foundation that was started by Caleb's cardiologist, Dr. Mas.


Heart 4 Heart Foundation, Inc.
16373 SW 54 Terrace Miami, Fl. 33185
305-979-3014


Dear Friends and Family:

Our Winter fest is here...
Come with us and cheer...
Many healthy hearts we need to hear
Year after Year!

Our yearly Heart 4 Heart Picnic is well on it's way! We need everyone's help and support once again so that we may help a child's dream come true: A CHANCE TO LIVE!!! We need to support our children and raise money. Through your generous support, we will once again pay for a child's open heart surgery. With all your help and support from last year, YOU helped save the life of a little girl from the Dominican Republic who is now back at home doing great!!! THANK YOU! We currently have several children in desperate need of help! So please, mark your calendars and come join us!

Sunday December 10th, 2006
1:00 to 5:00 pm
18275 SW 104 Street
Miami, Fl.
(This is right off Krome Avenue and 104th Street)

Tickets are already for sale, you can get them directly from me (you can call, e-mail, or just let me know how many you need and I will make sure I get them to you). Here is some of the info of what we will have:

Adults are $10.00 per person and children $5.00 per child. The ticket includes the meal with 2 sides or chips and a soda, juice or water. We will have also have additional refreshments, snacks, cotton candy, snow cones and many delicious desserts available at extra cost.
We will also have a LIVE BAND, bounce house, SNOW, pictures with Santa Claus, face painting, several games and activities, arts & crafts, silent auction, raffle, T-shirts & many, many more fun activities for the entire family.

This will be a wonderful event, lots of fun and all for a magnificent cause! Please make sure you get your tickets early! We hope to see you there!

If you wish to make a donation, you can make checks payable to Heart 4 Heart Foundation
and mail them to 16373 SW 54 Terrace Miami, Fl. 33185.
If anyone wishes to donate any items for our silent auction or raffle or for the event, please contact me ASAP. I am also looking for people interested in helping for the event!!!

God bless you,

Heidi Schuler-Arcila
Heart 4 Heart Foundation, Inc. Director
305-979-3014
hjschuler1@aol.com

New Info

Caleb's been doing great - all boy! Exploring everywhere, playing with everything, pulling his sister's hair!

A couple weeks ago he was diagnosed with Ehler Danlos Syndrome by a genetic doctor that we were referred to who practices at Joe DiMaggio Children's Hospital in Ft. Lauderdale. So what is Ehler Danlos Syndrome? Here's a quote from the EDNF (Ehler Danlos National Foundation) website:

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Basically it means that we can't throw Caleb around and he'll never be a serious athlete.

In other news, although he's doing great, we are still having big problems with his feeding. He won't eat with a spoon and it's quite an ordeal to try to feed him. He just celebrated fourteen months of life, by the way. We are researching some different programs, at the suggestion of Caleb's GI doctor, that are specialized feeding programs for children. They are all out of state so there's alot of issues to consider.

As always, we appreciate your prayers.

Dedication Picture

Dedication Thanks

We'd like to thank all that came to Caleb's dedication. Once again we were humbled and rejoicing in all the love that was shown. It truly has been a memorable year. The dedication was video taped and we look forward to watching it. Thank you all for making it and for standing with us as we pray that God would use Caleb for His glory.

Dedication Invitation

We are thankful to the Lord for blessing our lives with Caleb. Most of you know that the past thirteen months for us have been a test of faith and perseverance which would have been unbearable without your prayers and outpouring of love and help.

On September 24th at Calvary Chapel Kendall we will celebrate Caleb’s life by bringing him before the church and dedicating him to the Lord. It will be part of the 12:30pm Worship Service.

If you are unable to attend or do not live in the Miami area, please join us via a live internet web-cast by going to Calvary Chapel Kendall's webpage and clicking on “Live Broadcast”.

Calvary Chapel Kendall is located at 16435 SW 117th Avenue, Miami, Florida 33177

“Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.”
1 Thessalonians 5:16-18

Cardiology Visit Postponed

Dr. Mas was sick on Monday so Caleb will see her on Thursday. In the meantime, he continues to please his physical therapist and keep his parents on the move!

CALEB'S DEDICATION: YOU ARE INVITED!

On Sunday, September 24, as part of the regular 12:30 worship service at Calvary Chapel Kendall, Caleb will be presented and prayed for. It will be a time for us to stand before our Christian family and acknowledge that Caleb's life is dedicated to the Lord and we will endeavor to bring him up in the wisdom and ways of the Lord.

It would mean so much to us if you would attend. So many of you have been part of Caleb's life directly and indirectly. The blessing we have received from each of you cannot be measured this side of eternity. Would you consider standing with us on September 24 in celebration and dedication of Caleb?

The church is located at 16435 SW 117th Avenue, Miami, FL 33177. The service begins at 12:30pm. The church phone number is 305-233-5433.

If you are out of town or are unable to attend, the service is broadcast live on the Internet. You can join us electronically by going to www.calvarykendall.com and clicking the appropriate link.

We look forward to seeing you there!

Cardiologist Visit Tomorrow

Tomorrow Caleb will have another visit to Dr. Mas. Lately, he's seemed a little tired, which could be nothing, or it could be a sign of heart failure. So it's just a precaution, a wise one, for him to get another echo. His appointment is at 1:00pm and we're making it a family affair. Genesis likes Dr. Mas because she always gets stickers!

Progress Report

He seems to be gaining weight. The GI doctor encouraged us not to weigh him everyday. He's throwing up less. He seems to get tired more than a normal child; but that could be normal for him. He's at the age where he's really fun to play with. Thanks for your prayers.

Something Like Crawling

Caleb is mobile. Although he hasn't been officially clocked, my guess is that he can do about twenty feet in about thirty seconds or so. I think I'll call it "sit-crawling". Maybe we can video tape it for you.

So here's my best attempt at a description. He sits, he leans forward, he moves his hips in a scoot forward type of motion. And then he repeats it many times. It's actually pretty inventive.

The point is no matter how you get there, you need to move forward.