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.

Surgery Re-scheduled

Miami Children's Hospital has moved Caleb's surgery to Wednesday, January 11, the first case in the morning.

On the fifth of January, we have an appointment with his cardiologist.

Last night, Caleb had a rough time - constant crying, vomiting. It lasted from midnight until about 10:00am. He also has diarrhea. The doctor says he may have a virus. No surgery will be possible until he's not sick.

Some people started praying. He's doing better now.

Home, Surgery Scheduled

We went home Thursday afternoon. Caleb had an MRA (similar to an MRI) on Thursday morning. We were a little concerned that the general anesthesia and intubation might be a rough go for him, but he came through with flying colors. We get the results of the MRA today.

Looking ahead, Caleb's Glenn operation has been scheduled for Monday, January 9, 2006. We go to the hospital on the Friday before as an outpatient to do all the pre-op stuff - blood work, EKG, etc. Then, on the morning of the ninth, Caleb will be Dr. Burke's first case. After this operation, we are hopeful that Caleb will do very, very well.

Cath Update #2

The angioplasty was successful. Dr. Zahn took about three times attempts using balloons of increasing size to eventually increase the narrowing to about eight millimeters. His pulmonary artery is about the size of a six-year old! This is good. Small is bad. This should prove to make the forthcoming surgery very successful.

While Caleb was in the cath lab, a Miami Dolphins player delivered a Dolphins teddy-bear for him!

Caleb will be observed and tested for the next day or so; we should be able to go home tommorrow.

Cath Update #1

We just spoke with Dr. Zahn, the head of the cardiology department and the one who is performing Caleb's cath.

In his right pulmonary artery, they found moderate to severe narrowing. As I write this, they are inserting a balloon (angioplasty) which they will inflate at the point of the narrowing. They will then deflate it and pull it out and hope that the narrowing will expand. If this is successful, Dr. Burke will not need to address it during the operation in the future.

The good news is that they haven't had to intubate (put him on the breathing machine). Instead, Caleb is sedated, but he's breathing on his own. We hope this will continue to be the case during the rest of the procedure because oftentimes extubating can be complicated.

Thank you for all your prayers! We will continue to try to update as news (and a computer) becomes available.

Cath Underway

We prayed with the cath team and kissed Caleb goodbye. Now we wait.

Cath Just Days Away

On Tuesday morning, we will check into Miami Children's Hospital's ambulatory surgery waiting room a bit before 9:00am. Caleb will go to pre-op at 9:00. We will then go to the Parent's Sleep Lounge in the Cardiac Area. Caleb's will be the second cath of the day for Dr. Evan Zahn, the head of the cardiology department. When the first cath is over, the team, I believe, will take a break, and then Caleb's will begin. When the cath is over, Caleb will be extubated (taken off of the breathing machine) and then brought to the Cardiac Intensive Care Unit.

This is an exploratory cath, a precursor to the Glenn operation. Depending on what they discover, his surgery could be as close as a couple days after the cath. We are hoping, however, that it can be scheduled in January. If Caleb does well, he will stay overnight in the hospital on Tuesday, and we should be able to go home on Wednesday. Because Caleb seems to be fond of the hospital, we will not be surprised if he decides to stay a bit longer by giving the doctors something to work on.

We have been so blessed by the Lord. The outpouring of God's grace and riches upon our lives through His body has been overwhelming and humbling.

14 lbs, Baby!

Caleb is growing! 14 lbs. He visits his cardiologist tommorrow. We are preparing for his cath next week, Tuesday. He's been off his feeding tube now for a couple weeks! Thank you, Lord.

We Are Back Home

We were released from the hospital yesterday and are happily at home. We will be back in less than a couple weeks for Caleb's cath. We will continue to post as new events take place.

No SVT; Caleb Has A Virus

We are thankful that Caleb does not have the arhythmia known as SVT - the accelerated heartbeat. Evidently he has a virus; this causes his heart rate to climb. He also has a slight fever still. All things considered though, he's doing well. We're not in the CICU, but on "the floor", a regular hospital room.

Prayer Request

Caleb's heart rate is starting to climb - it's in the 170's. We were moved out of the CICU and onto the floor so there is not as much attention from the doctors and staff.

Please pray that his heart rate decreases. Monday night it was after people started praying that his heart rate came down.

Thanks.

Hospital Stay Number 4 Begins Unexpectedly: This Was Scary

Last night (Monday), around 9:30 Caleb became very fussy, unconsolable. When we put the monitor on him, his heart rate was in the high 190's, peaking at around 202 beats per minute! We came to Miami Children's Hospital. By the time we got here, his heart was beating at 230 bpm, and we were told that it got close to 300 at times. There in the main trauma room in the emergency department, the doctors tried to slow his heart down. They placed an ice-filled rubber glove on his forehead. This was supposed to trigger some response in his body to slow his heart down. After two attempts his heart was still beating fast. Next some medicine was administered to him through his IV. That helped for a few seconds, but then the IV came out. A new IV was inserted in his jugular vein in the right side of his neck. This is when mom left the room. After the second administration of this medicine his heart rate started to decline. We also kept putting a cold towel on his body because he had a fever of 103 degrees. He received some valium which helped relax him.

Well, it seems like Caleb got some type of virus. Perhaps from sister Genesis, Daddy, or Grandma who are all a little sick. Evidently this could trigger the fast heart rate, which is also called SVT. That stands for something like Subtricular Ventral Tycocardia. We were admitted back to the CICU.

Now, his vital signs are normal and he is just being kept for observation.

Since we've been here, we've been able to see some new frieds again and learn about the sad passing away of another baby whose mom always had such a great smile.

Thanks for All This!

Well, Caleb's eye infection has disappeared, he's holding his head up by himself, and his vomitting has decreased dramatically. Janet's doing an outstanding job of feeding him (of course, dad helps too!) He has outgrown several of his outfits. Janet now rides in the front seat while Pat drives and both kids are in the back. She used to ride in the back to keep an eye on Caleb.
We can still notice his hypotonia (flopiness) but even that has gotton much better.
Caleb smiles and stares and plays and moves. He sleeps through the night on top of that.
We thank the Lord for all the progress.
Here is a picture of Caleb with his great-grandmother.

A Smile

Cath Scheduled for December 13

We had a visit to the cardiologist yesterday. Caleb is still throwing up almost everything he eats. Somehow, though, he is gaining weight - not as much as a "regular" baby, but gaining nonetheless.
We have scheduled a cath on December 13. This will provide tons of information to help decide when his Glenn operation will be.

Caleb loves staring at people's faces. He teaches me to stare at my Father the way Caleb stares at me. We can make him smile and laugh, too.

Back Home

We were released from the hospital this afternoon.

Thanks for all your prayers, etc.

We will be heading back to the hospital in probably the beginning of December for a Cath procedure and maybe another surgery.

May the Lord bless you!

No Lovanox, Early Cath and Glenn Operation Discussed

Here's the latest:

• the doctors decided not to administer Lovanox, the drug that would have to be given via injection twice a day to prevent further clotting. We are a bit relieved that we don't have to "poke" Caleb.
• Dr. Zahn is happy with Caleb's size and says he's ready to do a cath to take a closer look at the heart in preperation for surgery number two, the Glenn.
• Typically, the best time to do the Glenn is at four to six months. Caleb is three. They are thinking about doing an early Glenn.
• The GI doctor decided to remove the feeding tube. Caleb will feed by mouth only now. He will be trying some solids, malanga, cereal, etc. We like seeing his face without the tube! He's still throwing up a couple times a day in spite of all his reflux medicine. I'd probably throwing up too if I was taking all that stuff!
• We have been awestruck at the outpouring of love by our friends and church family. We truly see the hand of our gracious God in you!
• We'll be in the hospital until at least this Monday.
• Please pray for Genesis as we don't see her as much as we'd like.
  

Blood Clots

A couple days ago we found out that Caleb has three blood clots in a vein in his upper arm. The doctors met at 3:00 pm on Wednesday to discuss his case. These veins could have been a result of the surgery. The other possibility is that he has a blood disorder that causes clots. If this is the case he will likely have to be given a medicine called Lovanax via an injection twice a day.

We have had some friends that have had to give loved ones shots. It's not something we're looking forward to doing. Ouch! Sticking a needle in your little baby two times a day! We hope that this won't be necessary. Please pray that he does not have any blood disorders.

We'll likely be in the hospital about 7-10 days, but only the Lord knows.

He is growing and moving more. He laughed for the first time a couple days ago - super cute!

Again, it sounds repetitive, but thank you for your prayers.

Happy Birthday, Caleb!

Dear Caleb,

We would like to wish you a happy three month birthday!

Three months seems like such a short time, yet for us, your parents, sometimes we felt like it was forever. You've been through so much and you've done so well. We wish your hospital stays and surgery were over and that we could all hop in the car and go to Disney, but unfortunately, it's likely that the hardest part is still ahead. You probably think that Miami Children's Hospital is your home, and sometimes it feels that way, but it's not your home. We promise that when all this is over we'll find our own cozy home and make you a cute little room that will be all your own. They'll be no more needles, no more monitors, no more tubes.

Caleb there's people praying for you all over the world. They've been praying for you since before you were born and I'm sure that they'll be praying for you during the weeks, months, and years ahead.

Jesus loves you, little Caleb, and we are awaiting for His plan for your life to unfold. So happy birthday, son. The first three months are behind us. The next three promise to be pretty tough. After that, we can look forward to your dedication, birthday parties, going to the beach, to church, and a million more fun family outings. It's coming, our little man, so hang in there with Jesus.

We love you!
Mom and Dad and Genesis

Boing and Bounce

Sometimes life feels like a pinball machine.

We've bounced back into the hospital. Because Caleb wasn't feeding well and throwing up, Janet took him to the doctor. Our pediatrician noticed that his liver was down. She called the cardiologist and then told us to go to the emergency room. A chest x-ray revealed that there was alot of flow to the lungs. It seems that he is in heart failure. He's been in this condition before, but we had thought he had rounded that corner.

Also, a doctor noticed that his diaphagm was low which could mean pnemonia which could have happened if he aspirated.

All that to say, please keep us in your prayers. We look to the Lord and His great mercy and grace. The One who plays what we feel is like a pinball machine is actually the One who is guiding and directing our lives for His glory. Although things don't make sense to us, the do to Him. That is our hope.

ANSWERED PRAYERS!

Janet just called me. The chief orthopedic doctor at Miami Children's Hospital just took an x-ray of Caleb's hip and says that there is nothing wrong with it! Thank you, Jesus. He is the Great Healer.

Here's some other news items:

• In less than a week, our little Caleb will be three months old. It's good to see him grow.
  
• He is now boasting 12 lbs, 12 oz.
  
• He's still having some vomiting problems, so we are trying a new medicine, which we think is working.
  
• Dr. Mas, the cardiologist, says that he is no longer in heart failure. She also would like to do a cath sometime soon to get a better picture of how his heart is doing. Shortly after that he will have his second surgery. She assured us that it will be sometime before February. We see her again in a couple weeks.
  
• Caleb recently visited the doctors and nurses in the CICU just to say hi. They all commented on how good he looks.
  
• He recently wore his Toronto Maple Leaf's outfit that Daddy bought him before he was born!

Behold, the Lord's hand is not shortened That it cannot save;
nor His ear heavy that it cannot hear.
Isaiah 59:1

The Happy Vomitter

One doctor said that some kids with reflux who vomit but gain weight are commonly called "happy vomitters". It seems that Caleb may fall into this category. We are happy that he is gaining weight, but are hoping and praying that his vomitting will stop. Caleb is learning how to pull out his feeding tube so we are feeding him more by mouth. Last night was the first night he hasn't had a tube in a long time. That's good in a way, but it also means that he didn't eat as much.

Hurricane Wilma knocked out our power, so that has increased the stress level a bit.

We could really use your prayers, especially for Janet during this difficult season.

Psalm 91:14-16 (New King James Version)

¹⁴ “Because he has set his love upon Me, therefore I will deliver him;
I will set him on high, because he has known My name.
¹⁵ He shall call upon Me, and I will answer him;
I will be with him in trouble;
I will deliver him and honor him.
¹⁶ With long life I will satisfy him,
And show him My salvation.”

Caleb's Cast

The results of the ultrasound and Monday revealed that one of Caleb's hips, the one that had been said to have "laxity", has not developed completely. If nothing is done, he wouldn't be able to walk. So we have to add an orthopedic doctor on our lists of regularly seen specialists. Supposedly, Caleb will have to have some type of temporary cast or sling in order to help his hip develop. We are still waiting for more info about this. We're not really sure if this has to do with his hypotonia or is a seperate deal.

Do please pray for his physical development that his muscles would develop great and that he would learn how to use them. Thank you so much!

Doctors and et cetera

Here's Caleb's Itinarary for the week:
Monday - GI Doctor to discuss feeding and vomitting issues, Ophthamologist to look at eye infection
Tuesday - none
Wednesday - Sonogram to check progress of hip laxity; physical therapy, occupational therapy, speech therapy
Thursday - weekly Cardiologist visit
Friday - none (yet!)

Yesterday, Tuesday, he did two feedings in a row completely by mouth, we did not need to use the tube. This was extremely encouraging. He did have a few episodes of vomitting, though. He's getting chunkier. That's good.

The Pump That Let's Us Sleep

During the night now, Caleb is fed via a pump that is connected to his feeding tube. This has a couple advantages. All we have to do in the middle of the night is add formula into the pump and then reset it. This saves us time. We also have a portable backpack so we take his pump with us if we need to.

This week Caleb will see the opthomologist on Monday for his clogged tear ducts. On Wednesday, he goes for physical, occupational, and speech therapies; he will also get an ultrasound of his hip to see if his laxity has improved. We also are hoping to get him to see a gastro-intestinal doctor to see about doing something for his occassional vomitting and diarrea.

One concern we have is Caleb's hypotonia, his floppiness. He obviously is growing and becoming stronger and moving his head and arms more. But we are not sure what long-term effects, if any, he will have because of this. Hopefully, there won't be any. We are trying to work hard doing physical therapy with him. We also will be seeing a neurologist soon to follow this up.

Overall, we are feeling that we are making progress. We are on a good road and are trusting the Lord. We are getting into a pattern that is a bit more manageable.

Thank you all for your prayers. Please know that we read and appreciate all the posts.

Hanging Out With Daddy

Grow Baby, Grow

Caleb is in about the 50th percentile for weight for a baby boy his age. His exact weight depends on what scale you use. Yesterday at the cardiologist he weighed 10 lbs, 15 oz. Today at the pediatrician he weighed 10 lbs, 11 oz. All baby scales are not created equal. Hopefully, he will keep gaining weight.

Feeding him is somewhat of an ordeal. We have to check the placement of the feeding tube. This is done by connecting a syringe to the tube, placing a stethoscope near his belly button, quickly inserting the air into the tube while listening for a swishing sound. If we hear the sound we know the tube's in the right place. Next, after preparing his bottle, usually 3 ounces, we feed him via mouth for 15-20 minutes. He usually takes about an ounce, sometimes more. Whatever is left we feed him via the tube. This is called "gavage" feeding. The disappointing part of all of this is when he throws up during this process, which usually happens 1-2 times a day.

He's had diarrea for the last couple days and a really bad diaper rash. We also found out today that he has a little infection in his mouth. So we're stepping up the sterilization of all the bottles, etc.

We have another appointment of Thursday with the cardiologist, Dr. Mas. She says that his heart is still failing but that it is a bit better. I tell Janet not to tell people that his heart is failing because it sounds so fatal, which I guess it is if it fails long enough. Basically, his heart "failing" means that if something doesn't change they will have to intervene. This time frame is probably within the next couple weeks. When we were in the hospital, all of the doctors decided that they didn't want to do anything until he weighs six kilos (13.22 lbs).

We continue to pray the Lord's healing hand will be upon him. Thank you for all the posts. They are an encouragement to us.

Today after the doctors visit we had lunch as a family at the Miami Cuban restaurant La Carretta. I ordered a chicken salad stuffed avacado and a cheeseburger. My wife ordered ropa viaja, which is shredded beef in a sauce with rice.

Caleb can't really go out in crowded places like church or birthday parties, but we can take him out to places that aren't crowded.

Update

Caleb is doing ok. Tonight he threw up a couple times and we were nervous for awhile.

Yesterday the baby of a friend of ours died. Janet spent much time with the mother when we were at the hospital after Caleb's surgery. The news was quite a shock to us, a real downer. He died at home, they did CPR, called 911, etc. The mom called Janet shortly after her little boy died. This baby boy had a very similar condition to Caleb. Our hearts go out to our friends; we have been praying for them.

Tommorrow we hope to see the cardiologist. Caleb will be weighed, receive an echo cardiogram and an EKG.

Blessed be the name of the Lord.

Home Again, Home Again

We are going home today. It will be good to have the whole family together. Anytime one of us is out with Genesis, she always asks about KB and the hospital.

The decision has been made to go home with a NG tube. This is a tube that goes up Caleb's nose and down into his stomach. Janet has learned how to insert the tube. Caleb will eat primarily by mouth and then whatever he doesn't take by mouth will be inserted into the tube. He hasn't vomited in many days now and seems to be gaining weight consistently.

We have also been keeping an eye on his hypotonia. Hypotonia is low muscle tone and "floppiness" that we have posted about before. We are really trying to work with him doing different exercises we have learned through the physical and occupational therapists.

As we have been adjusting to this new lifestyle so many people have supported us through prayer. Where would we be without you? Where would we be without the gracious hand of our Lord, Jesus Christ, to carry us and cover us?

We have, at times, found ourselves doubting, questioning, even getting a bit upset. Frankly, it's surprising and revealing. You don't think your capable of certain feelings and then you find yourself struggling with them. I read a devotional this morning that said that trials don't make you upset or bitter; they only reveal the anger or bitterness that's already in your heart. So this trial has helped us to see how needy we are. It has helped us learn about God's grace unto us and his faithful love for us. For that, we are thankful.

We thought this was going to be a short visit...

We are still here but hoping to be discharged within the next few days unless we decide that the G-tube is the way to go. The MRI results are back and we are waiting for the neurologist to tell us his interpretation. We are also meeting with the pediatric surgeon that will perform the G-tube operation if we decide to go that route. Hopefully these GI tests will help us decide what is best for Caleb. He looks a bit chunkier these days since they stopped giving one of his diuretic by IV and stopped the other one all together. I was so happy to read so many posts from the Hypoplastic Right Heart Web Site. Thanks for your encouraging words and prayers. For those of you reading the posts and wondering what HRHS, that is the short way of describing Caleb's heart condition and the condition of a number of other little miracles we have met during the recent months via an online support group for families of babies who have problems with their right ventricle and valve. We plan to post MRI results soon. Thank you all for your love!

PH Test Results

Over the last several days Caleb has had two tubes in his nose - one for feeding ad one for a PH test. This is a test that measures what's going on in his esophogas and stomach. This test came back with very positive results. The doctor said he doesn't have reflux disease. All the measurements were normal. Caleb will undergo a non-invasive test next week to check for bile reflux. The put a couple drops of a solution in his milk and take some pictures of his bowels after the feed; this will tell them if he has this other type of relux. If this test comes back normal it means that we will probably not have to get a G-tube.

Caleb is still vomitting pretty consistently; thus he's not gaining weight. Let's pray that this changes!

Progress Report

Right now, Caleb is undergoing an MRI of his head and spine. The results will be examined to determine if any of his hypotonia is due to anything abnormal in these areas.

As far as the meeting on Wednesday, it was a unanimous decision not to do anything to Caleb until he gains weight. They want him to be 6 kilos before they do a cath or surgery. (Maybe our friends in Canada could tell us how many pounds equals 6 kilos!) How they get him to gain weight is up for debate. Many of them want him to have a G-tube. This is a tube that goes directly into his stomach. We then would feed him by attaching an apparatus to a hole/button on his stomach and inserting food manually. This would be less work for him and for us. This disadvantages, of course, is that he would have to undergo another surgery and he would have a little protuding thing on his tummy.

The second option is to go home on a feeding tube. This is the tube that we have used in the hospital to feed him. It is inserted into his nose and goes down his throat into his stomach. The advantage is that it is non-surgical. The disadvantage is that he could still choke and throw-up on occasion.

Please pray that God gives us wisdom in making these decisions. Thank you.

Pictures

Click here to see more pictures.

What Will They Do To Fix Caleb

Since we were moved to the CICU on Sunday he has been feeding 10-15 minutes by mouth and whatever he doesn't finish they give it via a feeding tube in his nose. He is still throwing up a bit so they have decreased the amount of milk he is taking. One possibility was to make sure he was gaining weight using this feeding system and we would go home feeding him this way until he was ready for a diagnostic cath for the Glenn (2nd surgery). This is not an option anymore. Recent heart studies show that his heart is very large and there are significant markings in the lungs along with high pressures and measurements that are forcing them to intervene now. He will have a cath done this week to determine what is causing him to be in heart failure and pulmonary hypertension which can put the second surgery in danger and make him a candidate for transplant. If they cannot fix the problem or problems in the cath lab he will have to be reoperated (adding an operation to the series, making it four instead of three). Speaking of transplant...Please seriously consider becoming an organ donor. There was a 14 year old boy that was here since our first stay that died on Saturday waiting for a heart to be donated. This is the second child that dies during our time in the cardiac units. Please pray for God's strength and healing.

Pressing On

Everyday Caleb sees different doctors and therapists. Today he was seen by the usual group of doctors, residents, fellows, and nurses during the morning rounds. Several people we were used to seeing in this group are no longer assigned to the unit so they weren't really familiar with Caleb's history. (Mommy knows him the best.) They are not really sure what to do except try to fatten him up so that he can be bigger for his next procedure.

The neurology people came by. They say he has "central hypotonia." Seems to have something to do with his brain. Apparently, it may be completely correctable through physical therapy and certain exercises. The physical and occupational therapy came by but because he had just finished feeding and has a history of throwing up, they didn't work with him. They will hopefully do that tomorrow. We, then, will learn the exercises and work with him regularly.

Caleb has been moved to the CICU, so now, because the attention is much more thorough, Janet is able to sleep through the night and his nurse will feed him. Janet is staying at the hospital; Pat and Abuela (grandma) are on Genesis-duty.

He will definitely need a catheterization procedure at three months (November) but likely sooner. The goal for this hospital stay is too get him fatter, stop his vomiting, and decide how to proceed.

We didn't expect to be back in the hospital so soon. Please pray for Caleb; we know many of you do. Please lift him before the Father and ask him to be healed.

God's Healing Hand

The reason we are in the hospital is because Caleb is not gaining much weight, he's breathing fast, about 60 respirations per minute, the norm is 40, and because he has been vomitting. He has been diagnosed with relux and is on a medicine for that. He is not vomitting so much now.

The biggest concern is that he still has too much blood flow to the lungs, hence his fast respiration rate. We were hoping that he would grow into his shunt and his blood flow to the lungs would decrease to a normal level. This hasn't happened yet. The doctors want him watched closely. They will be doing an echo on Sunday. They have also called for a chest x-ray and blood work. They will discuss his case in their conference meeting on Wednesday. It is likely that they will want to send him to the cath lab to investigate further before they decide on whether or not he needs another surgery.

We were expecting that his second surgery (the Glenn) would take place at 4-6 months. Now it's possible that it could happen during this hospital stay. He's still pretty small so that makes the Glenn more difficult and the risk greater.

We are hoping that he won't need surgery. We are hoping that he will start gaining weight without vomitting and start breathing at a normal rate. We know that nothing is too difficult for the Lord. He is able to do immeasurably more than all we could imagine or ask. Lord, stretch forth your hand to heal.

We're Back

Haven't posted in awhile, we know. Pat's been doing hurricane relief ministry in Mississippi and Janet has been having her hands full, I mean really full, with our little Caleb.

But we are back in the hospital.

Caleb has been throwing up almost every feeding. He has seen a GI (gastro-intestine) specialist, and had a sonogram of the stomach done. It turns out that one of his veins from his heart are pushing against his esophagus, giving it a kink, or bend. He also has reflux. The doctor prescribed a medicine for his reflux to be given 30 minutes before every other feeding. So now he only throws up every other feeding.

Yesterday, Thursday, Caleb only drank six ounces all day. Usually he drinks 20-24. In six days time, he has only gained one ounce. The doctors would like to see him gain about an ounce a day.

So we are back in the hospital.

With all the medicines to give, and the crazy sleep schedule, combined with the uncertainty about Caleb's future makes good days difficult and bad days unbearable. We must fall back on what we know is true: God loves us; He is faithful; His word is true.

We have been able to meet some more parents and are hoping that the Lord will use us here to minister to people. Please keep us in your prayers.

A Rough Day

The cardiologist told us that Caleb is not doing well. He is still getting too much blood flow to the lungs. This is causing him to breathe fast and his heart to work very hard. There is an ever-increasing possibility now that we could be back in the hospital if there is not significant improvement in his condition. We have also noticed at home that there is an increase in his saturation levels. They are supposed to be between 75 and 85; his now are up in the low 90's. This is another sign of increased pulmonary blood flow. He has gained weight. Today he was 8 lbs 8 ounces; that's his saving grace and the main reason he wasn't hospitalized today.

Please pray for him and for us. We (especially Janet) need strength and wisdom. Thank you.

Doctors, Doctors, and More Doctors

Today Caleb will see his cardiologist. We are hoping that when he is weighed he will have put on some significant ounces. In other words, we hope, to use a Biblical image, he is not "weighed and found wanting."
Yesterday he saw his pediatrician. She's great. We chose her specifically because she was recommended by Dr. Mas, the cardiologist, and has other patients with CHD.
We also saw a pulmonologist. Once a month, Caleb receives a shot to protect him from RSV. He also has to be very protected from getting any kind of cold or infection as it would be much more difficult for his lungs to handle.
So three doctors in one week!
The biggest issue right now is his feeding. Janet has to "force feed" most of his three ounces. He sucks and swallows the first ounce fine. But the last two ounces, we have to massage his checks and throat as he feeds so that he will swallow. It can quickly become quite tedious and frustrating.
Would you pray that Caleb will feed better, that he will learn to suck and swallow on his own, that the Lord would strengthen him for this? Would you also ask the Lord to give Janet and extra measure of strength next week, as Pat will be out of town? Thank you!

...and Home Again

After blood tests and a couple chest X-rays, it was determined that the level of digoxin in Caleb's blood was too high. This was the cause of the vomitting and, most likely, the other symptoms. The solution is simply to decrease the level of digoxin that Caleb has been taking. (Digoxin is a medicine that helps the heart to beat more forcefully.)
We left the hospital shortly after midnight.

Back to the Hospital

We just talked to Dr. Mas, the cardiologist. We called her because Caleb has been sweating alot, and the veins below his neck have become more visible. She said this could be a sign of heart failure and asked us to go the emergency room at Miami Children's Hospital. Caleb likely will be kept overnight for observation.
We continue to pray and trust the Lord.....

The Adventure Continues

We are living with Janet's mom and family and they have dial-up Internet access. For this reason we are unable to be as active on keeping all the update current and picturesque. So here's a quick one.

• Caleb seems to have an eye infection - he's taking medication for that.
• The cardiologist says he's doing great - except that he is breathing too fast. She prescribed a medicine that should help that. We hope that his breathing will get better as he grows.
• He is still floppy, or hypotonic. This means that his muscle tone is not where it needs to be. I notice it most in his upper arms. We are navigating the sometimes difficult waters of insurance, goverment programs etc to get him all the therapy and treatment that he needs. This takes a bit of time.
• A nurse comes to our house three times a week to monitor Caleb's progress.
• We see the cardiologist again on Monday.
• Janet is amazing. She's doing a great job at a very difficult task. Please keep her in prayer.

That's all for now. Thank you so much.

Doctors Visits

Today we went to the pediatrician. Caleb is in the bottom 10th percentile for weight, and the 75th percentile for height; so he's tall and skinny! The big prayer request is that he would gain weight and be healthy in all other regards. The doctor ordered two ultrasounds - one of his hips and one of his kidneys just to make sure those parts are all working ok. He will be receiving regular physical therapy to help him regain all his movement. Thursday he goes to the cardiologist; in a few weeks to the neurologist.
We continue to grow in the Lord recognizing that He uses all things that we might know Him more.

Our First Day Home

...was busy adjusting to having two small children. Caleb is doing well. Genesis is having a bit of a tough time adjusting to Caleb being home and not in the hospital. She loves him very much and hugs him and kisses him and pats him on the head constantly. She doesn't like it when we put him to sleep after we feed him and she wants to use all his baby gear. We understand that he is still a novelty and expect things to gradually become more routine as the days go by. We are just happy to be home and pray that our sleeplessness will not let us loose sight of the blessing.

"Bless the Lord, O my soul; And all that is within me, bless His holy name! Bless the Lord, o my soul and forget not all His benefits:who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction, who crowns you with lovingkindness and tender mercies, who satisfies your mouth with good things, so that your youth is renewed like the eagle's." Psalm 103:1-5

Going Home!

Looks like it could be today. We've been here at Miami Children's Hospital for 25 days. Last night, I talked to a lady from West Palm Beach who was here for a month and a half last year. Her baby was born on Christmas Day, and they were here through Valentine's Day!
Today they put an IV in his hand, which is not an easy thing to do. This was done because they ran a lung profusion test in order to see the flow of blood to each of his lungs. A fluid was put into the IV and then in the Nuclear Medicine department, they did a computerized test that allowed them to see how the blood is circulating to each lung. The result of this test was 65/35, which is within the acceptable range for a cardiac baby.
The results for the discharge echocardiogram, chest x-ray and tons of blood work was also ok. We are now getting ready to watch a CPR video and take a test on a maniquin. I guess going home day is also test day. After we get the medicines and the oxygen saturation and heart rate monitor we should be able to sign the papers and head home. A nurse will be visiting us at home three times a week to check on Caleb.
These last 25 days have been somewhat of a roller coaster. We've cried, made new friends, prayed, laughed, been thankful, and made the CICU our home. Today we are happy.
Caleb visits the cardiologist next week, comes back here in three weeks for an MRI, and eventually we'll do all this again in about five or six months when he has his second surgery, the Glenn.
Thank you for walking with us through this. Thank you for your prayers and your love. We are so thankful to you and overwhelmed at the graciousness that so many have shown us. We will continue to update the site with his progress.

New Pictures!

Click here to see more pictures of Caleb!

By the way, the EEG came back normal. It should only be a few days now and we can go home.