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.

Look At Me Now

The feeding tube is out! Today was the first time Janet was able to see Caleb's face without any tubes. He is so cute! We are planning on posting pictures of him soon so you can all see how well he looks. The doctor today told us that they want to send us home as soon as possible. The main problem holding us back now is weight gain and him consistently feeding at least 2ozs every 3 hours around the clock. He has lost a bit over a pound after his cath and surgery and is not gaining it back. They stopped giving him one of the diuretics today which may help weight gain a bit. They also did the EEG (brain test) today, but we have not received the results yet. His lung still has a bit of fluid, but they are not flooded or getting worse.

Three Weeks Old Today

It is so nice to carry Caleb without all the cables and tubes he had! Last night they removed his nasal canula which was providing oxygen and some pressure to help him breathe. They were finally able to get a vein for an IV line today, so his arterial and vein line through his umbilical is gone. They also removed all the pumps and machines that were left in the room "just in case" they needed them again. All he has is three probes to keep tabs on his heart rate and arithmias, an oxygen saturation monitor, and a feeding tube in his nose which they use when he doesn't finish his milk. He looks so good! Thank you father for bringing us this far! He is also taking all his medicines by mouth. He is taking 3 diuretics, a medicine to help his heart pump effectively, baby aspirin to liquefy his blood so the shunt does not clot, and vitamins to help him get strong. The genetics test results were all negative. The doctors want to eliminate brain damage as a cause for his lack of reflexes so they are ordering an EEG (like an EKG but of his brain) for tomorrow and an MRI in 4 to 6 weeks. They are not able to do an MRI until then because the MRI uses magnets and he has 5 wires tying his sternum together from the surgery. I feel that we are getting closer to going home. All we are waiting for is for his lungs not to be hazy in his daily x-ray and for him to feed 2 ozs consistently without having to literally shove it down his nose. These are the prayer requests for now and don't forget to also give thanks for all He has done! Thank you again for praying for us and for emailing us so many encouraging words. We are so blessed to have friends and family that love us and pray for us and support us like you do. There are many sick kids and hurting families here and I wonder if they have people like you in their life. So when you pray for Caleb, please also pray for the other families here. Pray for Cassandra our neighbor which has had 3 open heart surgeries and 2 cath procedures and she is only 15 months old. She has at least 3 more surgeries to go. Pray also for Sebastian who has the same condition as Caleb but on the other side of the heart. He is recovering very slowly.

Please Comment If You've Prayed!

We have been astounded at the number of people who have reached out to heaven on behalf of little Caleb. I think at one time we had acknowledged people in around seven or eight countries who have prayed for our son. Simply as a testimony to the Lord and a witness to Caleb in the future if you have prayed for him please click below on the comment link and do a quick post stating your name (if you like) and location

If you know anybody who is praying and doesn't visit the site, go ahead and add their location, too!

"I will remember the works of the Lord...I will also meditate on all Your work, And talk of all Your deeds." Psalm 77:11-12

Diabetes Test Is Negative

Genesis was tested earlier for diabetes and the result is negative. They are now putting in another IV line in Caleb and taking out the arterial and venus lines. Two less tubes to worry about when we carry him. Thank you Lord for hearing our hearts cry!

The Last Hurdles of This Race

Caleb is officially off of all the medications and aids he was receiving intravenously. That is a huge step! He is now taking his medicines by mouth which are the same meds he will probably go home with. They are also considering taking out his arterial and venus lines. These are like IV lines inserted into a newborn's umbilical to access an artery and vein in the heart. The doctor also told us he will be going home soon. He then explained that "soon" means one or two weeks. Before we go home they need to make sure Caleb is feeding well, that he is stronger and moving more, and that his arithmias are resolved. Today he started speech, physical and occupational therapy to help him reach most of these goals. If we don't jump these hurdles within this week, they will refer him to a neurologist who will run a number of tests to make sure that nothing in his brain was damaged during surgery or recovery.

Like A Tree

Today we had an opportunity to go to church for the first time since the baby was born. Pastor Don McClure's words of encouragement were based on the following verses: "But none of these things move me; nor do I count my life dear to myself, so that I may finish my race with joy, and the ministry which I have received from the Lord Jesus, to testify to the gospel of the grace of God." (Acts 20:24) "...God is faithful who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape that you may be able to bear it." (1 Corinthians 10:13)

The message was exactly what our heart needed after finding out that Genesis might have diabetes. She will be tested tomorrow and we should get the results shortly thereafter. I told the Lord that I could not handle any more bad news, but if the tests come back positive it is because He knows we can. As we drove back to the hospital after church, I identified with one of the many fallen trees that we saw lying on the road knocked down by Hurricane Katrina. I recognized that I am a tree that was moved by the storm of having to leave the people we loved in Canada, having to move in with our parents, Pat not having a job yet, Caleb's heart disease, his surgery and difficult recovery, and now the possibility that Genesis might have a life long medical issue like diabetes. I don't want to be a tree that will get burned or mulched. I want to be one that can be picked up and replanted or kept in place with the aid of a string or wire. I don't want to be easily moved.

We know this is possible based on the words of the old prophet Jeremiah who wrote, "Blessed is the man who trusts in the Lord, And whose hope is the Lord. For he shall be like a tree planted by the waters, which spreads out its roots by the river, and will not fear when heat comes; but its leaf will be green and will not be anxious in the year of drought, nor will cease from yielding fruit." Jeremiah 17:7-8

Lets Try Feeding Again

Not much change since yesterday...they are offering him milk in a bottle three times a day for practice.

Hospital Hurricane Adventure

Caleb has taken some steps forward and others backwards during the last few days. He is now able to cry, swallow and move his body a bit more. They will begin physical and occupational therapy on Monday so hopefully that will help to further strengthen him. We are now able to hold him again which is great! They started feeding him milk by mouth, but decided it was too much for him to handle at this point. They reinserted the feeding tube and have added some fortifier to his milk as well as giving him vitamins in hopes that he will start gaining weight and strength to breathe and eat without any assistance. The doctors are still a bit concerned because he is still breathing fast and shallow; his heart rate drops very frequently which means he has arithmias; and they found a hazy lung in his chest x-ray. They will deal with this next week since things here have been slow due to the hurricane. Please continue to pray for strength for him and that the arithmias will go away without medical intervention. The doctors told us that he had the arithmias when he first came to the hospital and they disappeared and reappeared again. Thank you so much for praying with us and for us!

For theirs is the kingdom of heaven...

The little baby girl in the room next to ours went to heaven late this morning. I stepped out of he CICU for a break and when I returned the room was empty and clean. My heart sunk. Father, please comfort this baby's family like ony you can. Thank you that she is well and in your arms.

Extubation not as smooth as we hoped...

Initially he did very well, but after a while he got tired of breathing and his blood pressure increased and his oxygen levels have been fluctuating enough so they have him on a different machine now that helps him breathe but is not as invasive as intubation. This machine heats the air that he is breathing and gives him a little bit of pressure to help him inhale and exhale. Caleb is still very weak. This is the main reason he is having difficulty breathing without any assistance. They are watching him closely and trying to take every measure not to reintubate. Please pray that he will get stronger as the days go by. At this point he is only able to move his eyes, fingers and toes. His throat is swollen and sore due to the intubation so he is not swallowing and can't cry. The next hurdle he needs to jump is that of feeding. If he continues to be this weak, he will not be able to feed so they will probably put the feeding tube in his nose again after the threat of reintubation disappears. Lord, please strengthen Caleb so that he can breathe on his own!

Houston, We Have Liftoff!

The tubes have come out and Caleb is doing great. He will be closely observed for 4-6 hours and then, if all goes well, he will be able to feed.

This is the first day that Dad hasn't been at the hospital all day; no worries, Mom is there and doing well!

Extubation

It is likely that Caleb will be extubated tommorrow, Wednesday, between 10:00am-12:00pm. The final decision will be made first thing in the morning. Extubation means that his breathing tube will be removed. This is a big step; some babies have some problems after they are extubated because they no longer have the assistance of a machine to help them breathe. So the prayer request is that he will be able to breathe without the machine and that there will be no complications as a result of the extubation.

We're Getting There

Today is the first day that we have seen Caleb move on his own since his surgery. It was so exciting feeling his little hand squeeze our finger! He also opens his eyes from time to time. Before surgery he was definitely a big sleeper, only waking up for diaper changes and burping. So it's a chore to get him to wake up after being sedated for over a week!

Once he wakes up and some of the swelling goes down, they will take him off the respirator. That's the next big step. After that, he needs to start eating. So when do we go home? Not sure. Probably another week or so. That's not a big deal because we want Caleb to be as healthy as possible. What's a few weeks in the hospital compared to a long life for him?

Genesis spent some time with him on Sunday and will be coming by again today.

Thank you for all the positive comments about the website. If you're interested, check out www.sielerfamily.com home page for a short article about the similarities between physical heart disease and spiritual heart disease.

New Pictures

Caleb without his chest tubes!

Mommy changing Caleb's diaper for the first time since the surgery!

Chest Tubes Removed!

Caleb had two tubes coming out of his chest in order to drain all the excess blood and fluid that accumulates in his chest after the operation.

These tubes have been taken out! He also just had his inter-cardiac line removed! This is like an IV line that goes directly into his chest and into his heart. It is used for medicines, drawing blood, and taking measurements.

Progress Update

We are starting to see the light at the end of the tunnel. Caleb has been doing well. All of his numbers have been consistently good; they are gradually decreasing his medications. He is still a bit swollen, but that will decrease over time. They placed a feeding tube in his nose and starting giving him Pedialyte. This morning at 5:00 they starting him on breast milk, and at 11:00am they increased it.

So I think we have turned that corner; notwithstanding that at anytime we could encounter a complication.

Caleb's next big step will be to be taken off of the ventilator. They are starting to wean him from that, and he is taking many breathes on his own. His chest tubes also still need to come out. If all goes well, that could happen tommorrow! Shortly therafter, we will be able to hold him!

What would have happened without prayer? While all of the doctors and nurses have been incredible, we will never know the major role that prayer has played in this little guy's life.

Because of the advancement of medical science and pediatric cardiology, if Caleb had been born even fifteen years earlier, it's likely he wouldn't be alive today. He has a complex heart problem, but he's alive and on his way to going home. We await to see what the Lord will do through him.

Numbers

Heart rate, blood pressure, temperature, lactate, urine output, saturation levels, nitrogen and oxygen levels. So many numbers that tell us how Caleb is doing. Managing his treatment is simply trying to make all the numbers be what they are supposed to be at the same time.

Today his heart is in the 150's. Check. His blood pressure looks good. Check. His lactates fluctuate a little but they've been good. Check. His saturation level is doing great. Check. Today is the first day that Dr. Bolivar admits that Caleb's getting better. He has been wisely cautious the last couple days. They have stopped the medication that "paralyzes" him. (Norcuron?) He might start waking up a bit, although he'll still be sedated. We hope he opens his eyes! They are also weaning him down to a lower dose of Epinephrin.

For awhile this morning I put some headphones close to Caleb's ear so he could listen to some Christian music.

We don't take anything for granted. We know that he could get worse. We know that they may not be able to get him off all of the medicine and that the worst case is that he may have to have another surgery to correct his pulmonary blood flow. That would break our hearts. (Assuming they can be broken any more!) But we also know that God is here!

Numbers. Let me share with you the best numbrs of all: 41, 1, 2, and 3 - as in Psalm 41:1-3.

"...The Lord will deliver him in time of trouble. The Lord will preserve him and keep him alive And he will be blessed on the earth. The Lord will strengthen him on his bed of illness. You will sustain him on his sickbed."

Making The Turn

Dr. Bolivar, the head of the Cardiac Intensive Care Unit (CICU), is a gentle, honest man. He has two children, a one month old and a three year old. Every day, sometimes twice a day, he comes to see Caleb and gives us an update about his progress and what he thinks we can expect. He seems to understand how we feel.

Today he told us that usually every baby at some point makes a turn and really starts to do better. Caleb has not done that yet. He's not getting worse, so that's good. But we are eagerly waiting for him to make "the turn".

His heart rate is down in the 150's, his blood pressure is 70 over something, his urine output is good, and his lactates, which had started to climb up today, have settled back down. (Lactates are a measurement of how well the blood is profusing through the body, the lower the number the better.) His "sats" are good, too. ("Sat" is short for saturation. This is a measurement of the oxygen in his blood. We look at this number a lot!) So we are happy that all the numbers finally are about right. He was also taken off of nitrogen today.

Could we be approaching "the turn"?

Recent Pictures Posted

We decided to post some pictures of Caleb. However, please use discretion as to whether or not you want to see them or let your children see them. He is hooked up to a multitude of machines, including a breathing machine; he also has tubes and lines coming out of his chest.

Click here to see pictures.

One Step At A Time

Any progress is good. Today Caleb's heart rate has decreased, which is good. It had been averaging around 185-186 beats per minute; now it is in the high 170's. The goal is around 150 beats per minute. This was accomplished by decreasing very slightly the amount of epinephrin. His blood pressure has been doing well.

We had a couple scary moments today when his oxygen level dropped. Mostly, it was due to his oxygen tube being too low and therefore the air was mostly getting into one lung.

All of the progress made will come very slowly, little by little, step by step. That's kind of like spiritual growth, isn't it?

Critical Condition; Improvement Hopeful

We serve a mighty God. We know that the Lord is the one who controls every heartbeat.
Caleb is in critical condition; however he is not worse then he was yesterday. That is good. He may even be a little better. He is highly medicated, being given about nine or so different medicines. (Apologies to our doctor friends that I don't know what they all are called.) Because of the medication, his heart beat, blood pressure, etc is about where they want it. The goal here is to balance his circulation. Again, he seems to be a little better then yesterday.
So what's next? He is constantly being observed and "tweaked". Minor adjustments are continually made with his nitrogen, oxygen, and medications. We have seen some of our new friends' babies recover from similar situations in about a week. Caleb is not recovering from the surgery as quickly as the doctors had hoped, but we are trusting in the Lord that he will recover. As long as he shows signs of improving, however minute, they will keep doing what they're doing. If he plateau's, they may go to the cath lab and have a closer look to see exactly what the problem is and go from there. Worst case is that he'd have to have another surgery.
Often the doctors and nurses say that it is up to him (Caleb) as to how well and how fast he recovers. With our knowledge of God's sovereignty and power over life, with our understanding of our Savior's love for children, we know that the Father is able to change Caleb's circulation. That's our prayer request: that little Caleb's circulation would be balanced first with the aid of medical treatment, and then without. Please join us in prayer for this.
Janet is doing well. Every day her pain usually decreases. Daddy is doing well, too. We've been here at the hospital about eleven days. It's wonderful to have a situation in your life that draws you close to the Lord. We don't pray for trials to happen and it's certainly not fun; it is true, however, that it improves your walk with Jesus.

And I thought surgery was the tough part...

Ok, today hasn't been a good day, at least it didn't start that way. Caleb's blood pressure has been low, which means he's not getting enough blood through his body, and too much into his lungs. After trying to manage that problem with medicine to no avail, they have now changed strategies. They now have him on nitrogen, and have "paralyzed" him temporarily so that they can control all of his breathing. This should constrict the blood vessels in his lungs so that more blood will flow to the rest of his body. It seems to have helped and the numbers are looking much better. Much of the battle is simply to wait and see how he does. Dr. Rossi, whose on child was in this CICU at one point, says that absolutely he will get better.
We cry out to Jesus.

Whew!

The surgery went well. Caleb is doing great. His parents are doing well, too. During the next few days he will be weaned off of the medication and breathing machine and have his tubes taken out. We feel an amazing sense of relief and deep gratitude. We love you all!

Preliminary Results

The operation is not over yet, but we did just receive an update from the nurse. The surgery went well; there were no complications of which we are aware. They are finishing him up and we are expecting to see the surgeon in about an hour.
We are a bit relieved and of course thankful to the Lord and to the medical team and the prayer team.

Psalm 34:18 - "The Lord is near to those who have a broken heart."

Here we go...

We just prayed with Caleb and gave him a kiss. He is now in the operating room. We expect the operation to take four to six hours. Hopefully, we'll see him around 7:00 or 8:00 tonight. Let's pray....

Awaiting Surgery

During the night and through the early morning there were a few minor complications and issues. Among them were an air pocket between his lung and chest wall, part of one of his lungs collapsed a little bit, and he needed some blood. All are ok now. Caleb is comfortable due to sedation. We expect that he will be taken into surgery within an hour or two. We will try to post when this happens.
Thank you saints for your prayers.

Cath Failed; Surgery Tommorrow

I wish I could climb up on the operating table and go through it for the little guy. We certainly are growing to love him more and more.

The ductus was too narrow to insert a stent. So we are back to the three surgeries. Tommorrow afternoon Caleb will undergo the first of three surgeries to manage a condition known as Tricuspid Atresia. The goal for the surgery will be to insert a shunt connecting into his pulmonary arteria to increase the bloodflow into his lungs. Surgery number two will take place in three to six months. It is called a Glenn procedure. This will allow the blood from his head and arms to flow into his lungs without passing through his heart. Surgery number three, the Fontan operation, will take place a number of years from now.

So thank you for the prayers. Please pray for Caleb, Dr. Redmond Burke and the entire pediatric cardiac surgery team tommorrow. We are planning on Caleb being here at Miami Children's Hospital for another two weeks or so.

We have become friends with Tom and Tonya Haskins from Naples, Florida. They have a little girl named Mollie who was rushed here early last week and has gone through surgery and is recovering well. Their fellowship has been sweet.

Click here if you'd like to see pictures of Caleb intubated (with a breathing tube) after the cath procedure.

The Psalms work. As the Lord would have it, in my reading through the Old Testament, I am in the book of Psalms. I haven't had too much problem applying the scriptures into my life. This has been something that the Lord is teaching me. The Psalms are great tools to use for going through trials. When I taught a class on the book of Psalms we learned that the theme of the book is, "Life is hard. God is good."

Here's some verses I read earlier today from the Psalms:

• O LORD my God, I cried out to You, And You healed me. Psalm 30:2
• For His anger is but for a moment, His favor is for life; Weeping may endure for a night, But joy comes in the morning. Psalm 30:5
• Be of good courage, and He shall strengthen your heart, All you who hope in the Lord. Psalm 31:24

Time Set for Procedure

We met with Dr. Zahn. Caleb is scheduled to be number two on the schedule tommorrow. This should take place sometime before lunch.

Stent Procedure Scheduled for Tuesday

The doctors have decided to do a catheterization procedure on Tuesday. This means that, if all goes well, there will be no surgery until 3-6 months from now. We are, needless to say, very happy and thankful.

The typical way to manage Caleb's heart condition involves three surgeries. The most important one is the last one, called a Fontan operation, which takes place around the time that he is four or five years old. Everything done before that is preparatory to making sure that the Fontan goes perfectly.

It seems that Caleb has a pretty good anatomy that will allow for a stent to be inserted into his ductus to keep it open, allowing for blood flow into his lungs since the right side of his heart does not function. We will not know for sure if this will be possible until they start to do the procedure. Our cardiologist, Dr. Mas, seems to think the ductus may not be straight enough for this. But Dr. Zahn is confident he can do it. If he can't, he will pull out and then Caleb will have to have surgery.

So the prayer request is that the stent procedure will go smoothly. If it does, it's likely that we will be out of the hospital by the end of next week provided that the recovery goes well.

We have had many opportunities to get to know other families going through similar and more difficult situations. Conversations have been good. We have prayed together, eaten chocolate together, and become friends. One of the cardiologists, Dr. Welch, introduced us to Ana, a seven year old girl who has a very similar heart condition to Caleb's. Ana saw me in the hallway last night and asked to see Caleb. Children are so precious.

Caleb The Eating Machine

So he's learned how to eat! He'll fit into our family really well! They upgraded him from diluted, special-type of formula for babies with sensitive stomachs, to full strength regular formula! He loves it.

Janet is out of one hospital and on her way to another. Hopefully, before the day ends Caleb will have his first meal with Mommy!

Thank you for all the prayers.

They have tried to wean Caleb off of oxygen, but his blood saturation levels drop too low. This, and the results of the latest echo-cardiagram have led the medical team here to decide that he will need to have some type of procedure done soon. The good news is that he is a candidate for a non-surgical procedure that will insert a stent into his ductus that will allow good blood flow into the lungs. This will be done in the catheterization lab. Every decision is made with the next two surgeries in mind. The goal is that the last surgery, the Fontan procedure, will go perfectly. This will be done when Caleb is 4-6 years old.

We have been very blessed and pleased with the disposition and talent of the medical professionals here. They are a gifted group of individuals. We are thankful to the Lord for them.

Update

The doctors are very pleased with how Caleb is doing. In fact, our cardiologist, Dr. Mas, told me that our baby is doing the best out of all the babies in the unit! (Thank you for the prayers!) Additionally, outside of his heart condition, he is completely healthy! This is very significant because many babies with heart defects have other health problems as well. We are so grateful, and often moved to tears when we realize how much we have been blessed. Caleb is on no medication! He does receive a bit of oxygen through two little tubes in his nose.

There is a slim chance that Caleb will not need the first surgery. "Slim" is the word used by the doctor. There will be a conference Friday morning with all of the doctors, etc where this will be discussed. We should know more tommorrow afternoon. They may decide to continue watching him through his first week of life. Or, they may decide to go ahead and start planning the surgery. We will keep you updated.

Janet is doing well, on her way to recover. She has been in a lot of pain but is moving around and looking forward to being released hopefully Friday. She will then join Dad at Miami Children's where she will have the wonderful opportunity to exercise her mommy duties.

We have seen many children in very critical condition. It moves us to tears. We pray for Jesus to be glorified.

We have had the opportunity to pray with one father of a thirteen year old boy who was thought to be dead a little over a week ago. In a conversation with the dad, he confessed that he was "a backslider". We where able to encourage him that his sins were forgiven and that he had an opportunity to follow Jesus, no turning back. Please keep this brother in prayer.

Today, Genesis will come to meet her brother. Daddy is looking forward to seeing his daughter.

The staff at the hospital is amazing. This is a great place to be in this situation.

Pictures

Enjoy! Thanks for the prayers!

Click here to see more pix!

Caleb Arrives!

Caleb Elijah Sieler was born at 11:11am on Tuesday, August 9 at South Miami Hospital. He was 8 lbs and 3 1/2 oz. He was delivered via emergency C-section by Dr. Chi. Here's how it went down:
Monday
6:30pm - Janet started going into labor
Tuesday
4:00am - We check into South Miami Hospital
10:00am - C-section ordered after baby's heartrate is dropping significantly
11:11am - Caleb is born!
3:00pm - Caleb is transported to Miami Children's Hospital

Mom is recovering from some pretty serious anesthesia. It's amazing where that stuff can take you! She is doing well, resting at the hospital for a few days.

Caleb Elijah is with Dad at Miami Children's Hospital. He is doing well. Immediate surgery is not necessary. He is on oxygen so that his saturation level in his blood is stable. He continues to undergo several tests and will be observed for several days, and depending on his progress may or may not need surgery within a week or two. He will likely need (a second) surgery around three months.

He has a full head of black hair, long fingers, and a cute face. We plan to post pictures soon!

Thank you to so many for your friendship and prayers.

For You formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made. Psalm 139:13-14

Here's The Plan

Tuesday, August 9, at 6:30pm we will check into South Miami Hospital. Caleb will be born sometime on Wednesday, August 10, if all goes well. Dr. Nathan Hirsch will deliver the baby. He's the same doctor that delivered Genesis. We're thankful for the amazing medical technology that's used in all this. But I'm reminded of Psalm 22:9, "but You are He who took Me out of the womb..." The Lord is the One who brings the baby out of the womb. What tender, loving, Fatherly arms will be around our baby!

The State of My Wife's Cervix

Recently, the doctor told Janet that her cervix was not yet soft enough for the delivery. Reassessment will occur this Monday, August 8. If it has softened, and all other indicators are good, we will probably check into the hospital on Tuesday, August 9 and the baby will be born on the 10th. Look for another post next Monday.

When Will Caleb Arrive?

It is likely that Janet will be induced on August 9th, with the baby being born on August 10th. This is not definite, but quite likely. He'll be born at South Miami and transported shortly thereafter to Miami Children's Hospital.
Prayers have been prayed, doctors have been consulted, bags have been packed. Fasten your seat belts......

Appointment Today

At this moment, Mommy is at the cardiologist where they are performing another fetal echocardiogram. This is a very detailed sonogram of the babies heart. The information they obtain is used to decide when the baby will be delivered and when the first surgery will be performed.
We are thankful for the incredible advances in medical technology which will allow little Caleb to live far longer than if he would have been born ten or twenty years ago.
Each of our days is planned by the Lord, and we look forward to the joy and ministry that this young man will bring to the world.

The Latest

Today we found out that Caleb now weighs 7 lbs, 9 ounces. That's good news! This means that he will be at least 6 lbs, 9 ounces when he is born.
Although the due date is August 17, the doctors are planning to have him come into the world a bit before that, around 38 1/2 weeks. That will be around August 7 or so. The exact date has not been set yet. He will likely be born vaginally, not C-section.
He will be born at South Miami Hospital. Once he is stabalized, he will be transported to Miami Children's Hospital. The ensuing surgery will take place shortly thereafter. We will be trying to update this website with information as we learn it.

Thank you to all of our friends who have been praying for us.

Hypoplastic Right Heart Syndrome

Caleb has a condition called "hypoplastic right heart syndrome." Here is some information about it.

HYPOPLASTIC RIGHT HEART SYNDROME (HRHS)

Hypoplastic Right Heart Syndrome is a condition in which the right side of the heart is underdeveloped including the right atrium, and often the pulmonary and/or tricuspid valves. With HRHS, the baby's stronger side of the heart - the left side - is functional. The right side of the heart usually pumps blood to the lungs to be oxygenated. When the right side of the heart is underdeveloped, it is not able to get blood to the lungs. Babies born with this condition are OK at first, because the patent ductus arteriosis (PDA) is a connection that allows blood to go to the lungs. In all babies, this PDA usually closes within the first few hours or days of life. Once this connection closes, a baby with HRHS will not be able to get blood to the lungs to be oxygenated.

The treatments for HRHS are similar to that for HLHS babies. Prostaglandin is usually administered once the baby is born to keep the PDA open. Children with HRHS usually undergo 3 surgeries, with the first one being a BT shunt (and not the Norwood like with HLHS.) In some cases, the BT shunt will not be necessary, and a PA banding (pulmonary artery banding) will be done instead. The second and third stage surgeries are usually the same as for HLHS - the Glenn (or Hemi-Fontan) around 6 months to a year of age, and then a fontan surgery around age 2-5. (The timing of the surgeries can vary depending upon the child's condition.)

Cardiologist

All of the Fetal Echo's so far have confirmed Caleb's condition. The cardiologist has been pleased with what she has seen so far. We continue to trust the Lord and seek His strength.