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