100th Post!

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

New Doctor

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

Persistant Problems

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

Can You Help?

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

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

some steps forward ... others backwards...

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

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

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

Thank You Very Much

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

Caleb's Doing Great

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

Chest Tubes Removed

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

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

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

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

We say, thank you Lord for these great blessings!

Post Op Report

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

11:00 Update

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

Go Caleb!

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

Surgery Begins

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

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

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

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

Pre-Surgery Update

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

Surgery Re-Scheduled

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

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

Feeding Problems

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

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

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

Surgery Re-scheduled

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

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

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

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

Home, Surgery Scheduled

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

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

Cath Update #2

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

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

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

Cath Update #1

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

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

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

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

Cath Underway

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