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.

CAT Scan Results

Thankfully, it looks like Caleb simply has a big head. No fluid, no obstruction of the ventricles was found in his brain. The CAT scan was compared to the MRI done at birth and there are no changes. So there will be no brain surgery. That's a relief.

Caleb will continue to get a CAT scan of his brain done every year until his head is proportional to the rest of his body.

We are thankful to the doctors at Miami Children's Hospital who are so cooperative and available to us.

CAT Scan Today

At 10:00am today, Caleb will undergo a computerized axial tomography (CAT) scan of his brain to determine the cause of the abnormal growth of his head. Of course, we hope his body is just simply growing disproportionately and that everything else will catch up to his head. Worst case scenerio, of course, is brain surgery. We should know today.

He looks and acts great. He did fantastic during physical therapy yesterday. The therapist, who hadn't seen him in about a month, said that Caleb made her day he was doing so good.

Large Head Update

The doctor said that Caleb is not mentally retarded because he makes eye contact, claps his hands, responds to his name, etc. We are a bit relieved. She thinks he just has a large head. She did order an MRI to be done within three days so that should give us more info.

Prayer Request

Well, we are thankful for the little reprieve from doctors, therapists, and hospital stays that we have enjoyed. Things have been heating up lately however.

Caleb hasn't been eating, and when he does he has been throwing up. To make sure nothing was wrong with his heart, Janet took him to the cardiologist recently. Dr. Mas noticed that his head seemed to be larger than it should be and that his fontanel (the soft spot on the top of his skull) has not closed completely. She said this should have happened by the time he turned one. (The GI doctor says it should be closed by the time he's eighteen months.)

So today, Janet took him for his one year checkup. The measurement of his head is off the charts. His weight is in the lower 25th percentile, and his height has decreased to the 75th percentile; it used to be in the 90th percentile. So it seems that something strange is happening with his growth.

We've been trying to make an apointment with a neurologist at Miami Children's. I'm sure we'll be getting an MRI and all of that.

The good news is that he, at least to us, appears to be developing well mentally. He laughs, moves, picks things up, etc.

Well, thanks for your prayers.

Dry Heaves

Please keep Caleb in prayer. For some reason, he is throwing up alot again. Thanks.

Birthday!

Happy Birthday Caleb!

Today is your birthday. We are thankful to God that you are our son. No doubt your first year of life has had it's ups and downs. Because we love you so much, our hearts have been pained to see you struggle for so long. But nothing can replace the amazing joy filled laughter and smile that you are famous for. We are so blessed to be your parents; it is an honor.

May your second year of life be glorious. We look forward to seeing you walk, talk, love, learn, and grow. We'll always be here for you little buddy.

Happy Birthday!

Weight Gain

On his last visit to the GI doctor, Caleb weighed in at the same weight he was at six weeks previously. For some of us, it would be an accomplishment to not put any weight on for six weeks. But obviously for an eleven month old, it's not what is best. So we still are working on trying to get this little man to put some weight on. We've been praying for his appetite to increase and for him to gain weight. Please join us.

On other accounts, he's doing great. He's increasingly mobile, working on crawling. He loves to laugh and play.

Pastor's Potluck

Last night we went to Pastor's Potluck, an event at our church, Calvary Chapel Kendall, where new people can come and listen to the vision and history of the church, meet the staff, ask questions, etc..

I was thrilled to see all those who God is bringing this way. But what was more thilling was hearing another "God story."

As people went around the room answering the questions, "What brought you to Calvary Chapel?" and "What keeps bringing you back?" My wife was the last one to share. She mentioned that we had been to Canada to plant a church and then came back. Pastor Pedro then asked me to share a little bit of our story. So I shared a little bit about Caleb, his heart condition, our desire to plant a church in Toronto, and our decision to move back to Florida, and how our in-laws and church family have been so amazing through it all.

Hear's the God story part of it. There was a family there that was new to our church. About a year ago, they were asked by some friends of their's to pray for an unborn baby in Canada that had heart problems and the parents were moving back to Florida. They never had met us, didn't know our names, and we didn't know them. But God allowed us to meet last night.

Sometimes we get moved to tears when we realize how much God loves us to raise up people we don't even know to pray for us, and then allows us to meet them. These people are our heroes - you - the ones who have gone to the Throne of Grace on little Caleb's behalf.

May we say thank you? Thank you to Jesus for His amazing plan, and for His indescribable love and faithfulness beyond understanding.

The Saga Continues

Caleb still is struggling with feeding and weight gain. A couple days ago, he weighed 18 lbs, 14.5 ounces. That means he's lost about five or six ounces in about two weeks!

We're pressing on and praying for him.

The GI doctor actually suggested that we look into some programs designed for child feeding problems. One of them is at John Hopkins. So this remains a possibility.

He moves alot, sits up, has been going to church, is saying ma-ma, has a great grip, and a beautiful smile.

Weighing In

Last night we pulled out the baby scale which was provided to us courtesy of Children's Medical Services. Caleb Elijah weighed in at a whopping 19 lbs. 4 ounces. He's just under the 25th percentile. Everyone that sees him comments how big and great he looks. Thanks. Who knows what the Lord is going to be with his life?

Doing Well...Pressing On

Every once in awhile, we get an email: "Hey, I noticed you haven't posted anything on Caleb's site in awhile. I hope that means everything's going well."

We're always thankful that people are praying and are concerned about our family. And yes, Caleb is doing well. He's moving alot! Laughing, growing, and pulling his sister's hair. He eats, but not really well, always with a spoon. We press on, though. Janet is an amazing woman that is perserving in the daily grind of Caleb. She continues to take him to therapy three times a week and the occasional doctor's visit. He's only on Captopril and Aspirin.

Thanks guys!

Caleb Goes To Church

We have been happy that we have been able to bring Caleb to church. He likes it, too.

In Jesus' Arms

AJ went to be with Jesus at 8:10 this morning. We have not had the opportunity to talk or see the family.

Please Pray for AJ

This is going to be a tough week. One of our friends that we met at Miami Children's Hospital will be losing their 18 month old in just a day or two. The doctors have done everything they can do. There can't be anything more difficult than losing a little child. Our hearts are heavy for them. They have been a strength to us; we can only pray that we will be able to provide some small degree of comfort.

That special little boy will be in heaven this week. That's pretty amazing.

Still Vomitting

Caleb is still vomitting quite a bit. He is also having a hard time eating by spoon. We still have not been able to manage to feed him baby food since his last surgery. Sometimes progress comes s l o w l y.

Nine Months

Caleb is now nine months old. He's been out of the womb longer than he was in. He's doing well, still vomitting a bit. We're trying to fatten him up.

"His Entrails Gushed Out"

We were expecting Thursday to be a pretty normal day. Pat went to work expecting a call from Janet early afternoon to come and pick her and Caleb up from the hospital. Well...

The resident came to remove the tube and drain out of Caleb's side. Unfortunately, the tube was not the only thing that came out. Yes, our apologies to all our weak stomach friends, but Janet got her first look at the inside of Caleb. Whether it was muscle, fat, or other we know not. The resident didn't know what to do - he tried to stuff it back in - I'm not kidding - reminds me of one of those stuff your own teddy bear places at the local mall.

Well, they finally cut it and stitched it up, and we stayed yet one more day at Jackson.

We did go home Friday.

Caleb is doing well and eating better.

ERCP Completed

Dr. Kramer and his team did a great job. They were able to navigate in and take some pictures. They saw several stone fragments. Using the adult probe, they were able to attach a basket and sweep the common bile duct, removing most of these fragments. Further pictures revealed one little stone that they were unable to get; it may not even be a stone but an air bubble, Dr. Kramer said. This additional stone should have no problem passing because part of the ERCP involved cutting the sphincter.

If Caleb does well and shows no sign of infection or any complication, we should be going home today.

It's been a brutal two weeks: three hospitals, one surgery, three general anesthesia, inummerable "pokes" for blood and IV, lots of hospital food, and a battle to see one another. Of course, there was lots of prayer; and One faithful God who comforts us and never leaves us.

Vitals Up

Caleb's heartrate has been up, and he's been breathing fast. They took a chest x-ray and found some fluid. He hasn't been peeing enough either. So they decided to start him back on Lasik and Digoxin. Lasik helps him get rid of fluid and Dig helps his heart to beat correctly.

We were excited that he was off of all his meds, but if he needs them, he needs them. We want him to be very stable for his ECRP. Hopefully, he can start to be weaned off the meds at a later point.

ECRP & Transfer Scheduled

Caleb's ECRP has been scheduled for 11:00am on Wednesday at Jackson. We will be transfered tommorrow, Tuesday, afternoon.

Eating

He eats well when he's on pain medication or sedatives. Otherwise, his eating is an ounce here an ounce there. Perhaps his pain is from the stone that is still in his common bile duct. We'll ask the surgeon this today, hopefully. He did tell us yesterday that the feeding problem is probably not associated with his stones. That was surprising.

Good Deal

Caleb is doing great. No more IV's. We're waiting to find out when we go to Jackson. It will likely be Monday or Tuesday.

Off Meds

Caleb is doing well. He is off all of his heart medications, so that is great news. The latest we have heard is that the procedure at Jackson (University of Miami) will be on Wednesday.
Thank you to all of you who have called, posted, visited, and prayed. We are thankful to the Lord fo you!

Bleeding Scare

Caleb continued to bleed from his incision at his belly button. He had to be re-sutured by the Fellow (student doctor). He also had to receive a blood transfusion. He is doing well now. We look forward to a better recovery now. We had pizza with friends here at the hospital tonight.

Lap Surgery For Stones Not Completely Successful

The surgeon was able to remove the gal bladder and one of the stones ubstructing the common bile duct via lap surgery today, but the other one is apparently too big to advance into the intestine via the methods used in lap surgery. It was too risky to open him up, so the plan is to transfer to Jackson Monday for an ERCP. An ERCP is basically an endoscopy where they cut the muscle that goes from the common bile duct (CBD)into the intestine so the stone could pass. If this doen't work we go back to MCH for a pretty big and rare surgery. This means at least one more entubation and another hospital transfer. How is Caleb doing? After a bunch of doses of Morphine and Adavan he is finally asleep and more stable. one of his incisions is bleeding significantly from fighting the nurse and mom who spent most of the night trying to keep his oxygen canula on his nose so he wouldn't desat. Hopefully his vital signs will stabalize after some good rest and be strong enough for part two come Monday. We are in the ICU again and need your prayers. We are exhausted and just want to be together as a family again.

Surgery Continues; Ministry Happens

We met a Christian couple from the Bahamas. Their daughter, Hannah, is the same age as Caleb and has a complex respiratory ailment. We were able to share and pray with them.

The surgery is still in progress. We were able to meet a doctor friend who told us that they were still using the laproscopic method. This is good. If they are able to complete the surgery with a laser it means a smaller scar, less pain, and a quicker recovery.

Surgery Underway

We said good-bye to Caleb. Dr. Sola will be performing the surgery. Hard to say how long it will take. He will attempt to do it laproscopicly (via laser). One of the cardiac anesthesialogy assistants is a Christian. He is one of God's people placed there to be in prayer. God has his people everywhere. We are a big family.

Surgery Time Change

Caleb's surgery will be taking place at 4:00pm today (Thursday). Please keep him, the doctors, and the medical staff in your prayers.

Transfer and Surgery

Caleb has multiple stones in his gallbladder and two stones in his "bile duct tract". The anesthesia department at Baptist Hospital does not feel comfortable treating Caleb because of his heart condition. Therefore, we were transferred to Miami Children's Hospital today. Our GI doctor spent 3/4ths of the day on Tuesday talking with doctors and surgeons trying to come up with a game plan. They were originally planning on doing the ECRP at Baptist and then transferring to Miami Children's for the gallbladder removal. The ECRP is a procedure that is not done at Miami Children's. Transfering to Jackson Hospital was also considered.

So tommorrow (Thursday) at 3:00pm Caleb will undergo a surgical procedure to remove his gallbladder and then the surgeon will remove the stones in the tract. It is a very rare situation. Miami Children's has only done one of these with a baby as young as Caleb this year. It should be a fairly long procedure, maybe three to four hours.

There is an outside chance it will get rescheduled pending the availability of the cardiac anesthesia team.

We do have a peace. The Lord is good.

Stones

It's interesting that they call these things stones and not pebbles. Anyway, the MRI revealed three stones, one in his gallbladder and two in the "tract". The two will be removed with a procedure called an ECRP. This is kind of like a tube in a tube that is placed down his throat into his esophagas and down toward his gallbladder. Then, after this procedure is done, Caleb will have his gallbladder removed during a surgical procedure. None of this will happen today. We will post more information as we get it.

Caleb is happy as ever, constantly moving around, chewing the cables attached to him, kicking, laughing, playing.

Yesterday he had to be fastened down on a table during a GER test - that, I believe, stands for Gastro Esophagal Reflux. The test took an hour and Caleb endured it like a champ!

Or maybe not.....

One of the surgeons doess't think Caleb has stones because he's never seen it before. Today's MRI should confirm that. If he does have them, they will likely try an ERSC or ESPC (or some letters like that). This is a way to remove them without surgery.

1:30pm
The MRI is over - waiting for results.
They gave Caleb two doses of Versed and it still didn't knock him out! What problems do you have with your 8-month old? For us, it's his immunity to Versed! (chuckle, chuckle)

Gallbladder Stones

On Thursday, our GI doctor admitted Caleb into Baptist hospital due to his feeding and vomitting problem. We usually go to Miami Children's Hospital, but our GI doctor uses Baptist. We really like the hospital - super clean and nice rooms - only one patient per room. A bigger play room (for Genesis). Better TV channels. Great security. Bigger cafeteria with reasonably good food. It's a little bit farther from our house. We're getting good at evaluating hospitals.

Caleb's a hard stick. That means it's difficult to get a needle into his vein for blood or an IV. It took the folks at Baptist about three or four tries. That breaks a parents heart - your kid screaming, blood squirting, and your heart pounding. And then we do it again! Maybe I don't like this hospital anymore.

All of the tests came back negative - until recently. Something was wrong with his liver - it was "backed up" or "full" - probably because of all his medicines that he takes. Yesterday they found another big problem - stones in his gallbladder - lots of them. They are even spilling out. If one gets into his pancreas, we have big trouble.

Our GI doctor is shocked. She has never seen this before. Usually this would be seen in teenagers, but never a little baby. We have learned that sometimes that 1% is us.

Caleb will be a case study. Other doctors and surgeons will be consulted - perhaps even from University of Miami.
This likely is the reason for his pain when he eats. It's also very likely that Caleb will have surgery sometime within the next several days.

This little guy is my hero.

Still struggling

Caleb seems to have quite a bit of pain, especially when he eats. He's not eating all he needs to, but he is gaining weight, albeit slowly. We have an appointment with a new doctor who specializes in homeopathic medicine for children on Monday.

Miracle Workers Comments

Did you see the show? Felipe's cute, eh? He's a great little boy. That surgery is the same surgery that Caleb will have in about 3 years or so. It's one thing to lay little Caleb on the operating table as an infant. We're building a history with him; we have a relationship with him; we love him. It's going to be tough. But we'll do it with the strength of the Lord and with the prayers and support of our friends.


This was a common scene, and those like it, in the hall of the CICU at MCH.

Thank you to those of you who watched. If you want to learn more check out this link:
http://www.abc.go.com/primetime/miracleworkers/bios/105709.html

Please post your comments if you saw the show!

Discharge

We are being discharged from the hospital! We are glad to be going home. Caleb no longer has diareah and is very playful.
We will be seeking to move his therapy to the home. This will be better for him and better for Janet.
Caleb spends his time practicing sitting, eating, playing and sleeping. We have an appointment next week with Early Childhood Intervention, an organization that exists to help kids that are behind in their developent. Caleb will undergo a thorough evaluation.
We also emailed The Brooklyn Tabernacle to put Caleb on their prayer list, (http://www.brooklyntabernacle.org/about/prayer.cfm).
Thanks for your prayers.

Update

Caleb is doing better. He is very happy and playful. He can't play enough! They were talking about sending us home today, but he's kind of had a relapse with diarrhea and he's not eating that well so I suspect we will be there for a couple more days.

In The Room

They are in a room and doing ok. His diarreah has subsided and seems to be moving toward being "regular". He has an IV and last I spoke with my dear wife, Caleb was sleeping on top of her. Cool.

Hospital Admission

Caleb is being admitted to Miami Children's Hospital due to dehydration. Please keep him and Janet in your prayers.

Meet Caleb's Friend Felipe and Learn About His Heart

Watch Miracle Workers this Monday Night at 10:00pm EST. You'll meet Felipe, a boy that we know who was in the hospital with Caleb and has the same heart condition. You'll also meet Dr. Redmond Burke who performed both of Caleb's surgeries. Lastly, you'll meet our cardiologist, Dr. Mas.

If you've been tracking with us at all through this adventure, you'll really want to watch this. Thanks!

Back to the Tube

When I got home from church last night I picked up Caleb just to spend a little time with him. I was shocked at how light he was. It's been about three weeks now that he hasn't gained any weight. He's had diarrhea for several days and his usual vomiting. So we decided to put the NG tube back in.

The NG tube is a thin plastic tube that goes up his nose, down his throat, and into his stomach. It is taped to his face and then fastened to a feeding pump. This system helps us to continually feed Caleb small amounts over a long period of time, thereby helping him to keep his food down. Since he's been dehydrated, this really is our only option, other then taking him to the hospital to get an IV.

It has been a few months since Caleb has had a tube like this. Less then five minutes after we were able to secure the tube, I'm talking it was already taped to his face, he yanked it off - tape and all - when we weren't looking.

Well, if it wasn't heart wrenching enough to put that tube in him, we had to do it again - this time with more supervision until he finally fell asleep.

Sometimes it feels like we're going backwards....

Developmental Problems

We know that with every problem comes a possibility. God is faithful.

We do want you to please pray for Caleb's continued development. Today, his speech therapist told us that something is wrong with how is developing. He is not pushing his food to the back of his mouth with his tongue like he should. Please pray for his growth in this area and his overall strength. Ask God to heal him. Thank you so much.

Latest News: A Hospital Stay, A Progress Report and More...

Yes, chalk up one more hospital stay for our little fighter. Last Wednesday, on my way home from church Janet told me that she was taking Caleb to the ER at the suggestion of our doctor because he had been crying constantly and had appeared somewhat lethargic. We wanted to make sure he did not have meningitis. After running some tests and evaluations, to our shock they wanted to admit him. At first, we tried to convince them to let us go home and we would follow up with the doctor; however we decided to stay. We were placed in a room around 5:00am Thursday morning, approximately 6 1/2 hours after arriving at the ER.

While the ER is far from feeling like home, we are somewhat more comfortable there then most people. (That's pretty weird.) We have been able to build some relationships with the nurses there. One goes to Calvary Chapel Ft. Lauderdale. Others have treated Caleb before and they know him well. This was the case with the nurse we had Wednesday night. We were able to talk to him, find out a little bit more about his life, his career, his past, et cetera. Then, after he had walked us to our room, I thanked him for all his help, gave him one of my cards, and told him to let me know if he ever needs any spiritual help or needs a church to please let me know. The next words that came out of his mouth floored me. It was something like, "My life is really falling apart." We were able to minister to him a little bit and hopefully we'll see him at church.

That's how this thing with Caleb always goes. It drives us nuts to have to see him in pain, constantly throwing up, getting stuck with IV needles, taking so many medicines. But then there's always that moment of ministry that never would have happened without a hospital visit.

Please pray for Caleb. We came home Thursday. But while at the hospital we think he might have contracted another virus. He now has diarrhea, and seems to be vomiting everything he eats. Talk about laundry!

Today he's supposed to have a lung profusion test, as he is eight weeks post-op from his Glenn surgery. We have a couple concerns about the test because we have a friend who took the test, was mis-diagnosed based on the test results and had a cath procedure that was completely unnecessary!

Please pray that the Lord would strengthen his muscles. He still seems to be floppy, is not able to sit up on his own, and needs more therapy. Granted, he's been through a lot, but we are hoping for more progress.

Miracle Worker: as posted previously, ABC is airing a program called the Miracle Workers. Our little friend, Felipe, will be featured a week from today. Please watch it if you are interested in some of the steps that we have been through. Felipe's heart condition is very, very similar to Caleb's. You will see some of Caleb's doctors including Dr. Mas, the cardiologist, and Dr. Burke, his surgeon.

Miracle Workers

Tonight at 10:00pm on ABC is the new show Miracle Workers. One of the hosts and members of the medical team on the show, is Dr. Redmond Burke (second from the left), who performed both of Caleb's surgeries. We love and respect Dr. Burke.

Shortly after we moved back to Miami, our cardiologist, Dr. Mas, told us about the filming of this program for ABC and wanted to know if the producers could call us because they thought our situation would be perfect for the show. For awhile, we thought it would happen, but the timing never worked out.

We do know a little boy Felipe, who was in the hospital shortly after Caleb, who's surgery will be featured in an upcoming episode. He had the Fontan operation. This is the same operation that Caleb will need to have in a few years. During the program you can meet Dr. Mas, Caleb's cardiologist, as well as, I'm sure, other members of the surgical team.

We'll be watching.

For more info about this program, click here.

Now for an update:
Caleb has been a bit sick, running a fever, lost his voice, very fussy. We think it's no cause for alarm, just a cold, etc. He still is vomitting a bit, but has started to eat baby food. He goes daily to the chiropracter, as this, we believe, will help his reflux. Seems to be working...
He teaches us patience and endurance. He's fun to play with. He needs more therapy, as he evidently has an eating/feeding disorder. He's not sitting by himself, yet, but getting closer every day.

Thanks for all your prayers.

100th Post!

Wow, this is our 100th post on Caleb's site. He's doing ok, however he throws-up probably at least ten times a day, sometimes more, sometimes less. He's on Prevacid, and now they want to start him on Reglan. He has severe reflux. He's a week over six months old. We're going to do some research and look into some alternative solutions for this. It's really crazy. Feed the baby; clean up his vomit; change his diaper; repeat. I don't know how my wife deals with all this day in and day out. I'm trying to help her today by watching both of them so she can clean and I'm going crazy!

New Doctor

We switched GI doctors and are happy with how things are going.

Persistant Problems

We're still having feeding problems with our little son. He's back to throwing up alot. We're switching GI doctors and hoping to get him retested for reflux, stomach problems, etc. Our appointment with Dr. Katubi is this Friday. Please pray that this problem/illness would be solved by our Lord and wisdom for us and the doctors. Thank you!

Can You Help?

Our missionarry friends from India are in the states for a few months on furlouwe to have their fourth baby and to transition to another mission field. They left everything that they could not take with them on the airplane and are in need of the following items. If you have any that you are not using and want to lend or give away, please email Pat at psieler@gmail.com. Thanks for your help!

Infant car seat; unisex baby clothes; booster seat for a 5 year old; car seat(s); boy clothing size 6-7; girl clothing size 3T-5T; heavy winter jackets for the kids; general baby stuff

some steps forward ... others backwards...

First of all thank you all for praying for us and for your willingness to help out with meals and whatever else we needed. We have been home since Friday afternoon and are very grateful that our stay in the hospital was short. This was actually one of the shortest stays we've had!

Caleb is doing well cardiac wise. His oxygen levels are in the low 80's and he looks amazing for having had heart surgery less than a week ago. He is getting the post-Glenn headaches that we were warned about so he is not sleeping much and is extremely fussy and not very happy. The headaches will stop around 1 month after surgery when his body gets used to "the new piping". Tomorrow we have our post-op cardiology visit and expect a good report from Dr. Mas.

GI wise...Caleb's terrible reflux is gone. Thank you Jesus! The bad news is that we had to re-insert the feeding tube Saturday night. Caleb has been eating without the aid of a feeding tube since the night before Thanksgiving and doing great, but the stomach virus he got the week after Christmas totally threw him off his groove and he has not recovered. Recently we realized that his feeding problem is far from being over. He has to have some type of eaing disorder perhaps due to all the negative stimulation he has recieved to his mouth - being entubated so many times and for long periods; the feeding tube; the about 15 doses of terrible tasting medicine he takes a day; all the milk they have put him on to get him to stop throwing up... The last 2 months the speech therapist and we have tried everything we can to get him to swallow baby food, but he just won't. And now we are back to not wanting even milk. Once again we feel the threat of having to operate Caleb to put a G-tube (permanent feeding tube that goes directly into the stomech). It is super sad and frustrating for us so this is a major prayer request. If you have any suggestions, we welcome them.

Thank You Very Much

We've been moved to a regular room and we're going home tommorrow. Thanks to all!

Caleb's Doing Great

He's drinking milk, he's not on versed, or any other "relaxers". (They weren't doing much anyway.)
He still has a couple IV lines, but that's it!
The nurse said that Caleb was in 24 hours where most babies who get his operation are in 2-4 days! Wow, Lord. Thanks for answering prayers and for raising up so many to pray!
We're not in a hurry to go home, but it will probably be by the end of the week.

Chest Tubes Removed

Caleb's chest tubes were just removed. Everything is progressing on schedule. "This is just where we want to be. He's doing very well," says Dr. Raju, one of the CICU doctors whom we have gotten to know throughout our numerous stays here in the hospital.

The biggest challenge has been keeping him stationary so as not to cause the tubes to bleed. Now that they are out, we are moving towards being able to untie the restraints on his hands that had to be placed yesterdayso that he wouldn't remove the tubes himself!

There also seems to be no lingering hypotonic (flopiness/weak muscle tone) effects from the anesthesia or surgery. For this we are grateful. We are also grateful for the opportunites to be a light for others here in the hospital.

Dr. Anthony Rossi, the head of the CICU, says that by this time next week we should be home!

We say, thank you Lord for these great blessings!

Post Op Report

Caleb is now in the CVICU recovering. Dr. Burke connected his superior vena cava to his right pulmonary artery; patched up the left pulmonary artery that was collapsed and ballooned when he had his last cath; and permanently closed his main pulmonary artery so that there is not too much blood flow going to the lungs. They were able to extubate him which is a big step and all his numbers look good except his oxygen saturation levels. They were usually in the mid to high 80's and are now in the low 70's. We pray that as he recovers they will increase to be 80's again. He is not very sedated so he is a bit cranky. One of the most common side effects of the Glenn operation is strong headaches since the blood from the top part of his body (mainly his head) is flowing into a smaller area (the right pulmonary artery) than normal (the right atrium of the heart). The blood backs up in the head and can swell causing these painful headaches. Hopefully they can keep him sedated enough to allow him to sleep and not fuss or move around which can make the headaches worse. We are doing ok. Based on past experience the easiest part is over-surgery. The more dificult part for Caleb and us is recovery so please don't stop praying! Thank you for all your love and encouraging words.

11:00 Update

Caleb is now being sewed-up. The surgery is going well. The internal work is done. We should see the surgeon in an hour or so; we should see Caleb shortly after that. Please pray for a full and speedy recovery.

Go Caleb!

For a story of how God is using Caleb's life, see our homepage www.sielerfamily.com.

Surgery Begins

We just kissed Caleb good-bye. The next time we see him, he will be heavily sedated and have the IV lines, etc. etc.

We had a good time of prayer in the car on the way over, just thanking the Lord for him.

We should get our first update from the nurse in about an hour. The surgery should last until about 1:00pm. It will take Dr. Burke almost an hour just to cut through the scar tissue from his previous surgery.

We're trusting in the Lord to touch him and heal him.

Pre-Surgery Update

Janet took Caleb to the hospital today to do all the pre-op stuff. We also wanted to talk to Dr. Burke, the surgeon. They told us that wouldn't be possible until Monday. But the Lord worked out very naturally!
We check into the hospital very early on Monday. Please pray for Caleb, he's still not eating and seems to be losing weight.

Surgery Re-Scheduled

On our way to Miami Children's Hospital today, we got word that his surgery has been moved to Thursday. We asked for a different day and ended up rescheduling it until next Monday, the 16th of January. So that's the latest date. The doctors will discuss his case in detail during their weekly conference this Wednesday.

Caleb continues to grow and move and "talk". Genesis absolutely loves playing with him; he laughs at her alot.

Feeding Problems

Caleb hasn't really been eating very well recently. It's amazing how there are so many ups and downs. Since he's been sick with diarrhea, his eating has not been what it used to be.

On the brighter side, we have not seen so active and happy as he has been recently. He moves his arms and plays so much!

So please pray that he eats well and doesn't throw up anymore. Thank you.