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.