Mr. Giggles

Passed out. 

Happy boy playing with his rings in his Boppy!

Trying to look at his binky! HAHA

Snuggled into Daddy's chest. Yes, he positioned himself like that & yes he is sleeping this way. 

Talking to Mommy.

Tummy time & looking at himself in the mirror.

Dollface. 

On Thursday, May 31st Caelin laughed for the first time. He has been smiling for a few weeks now but he finally got out his first giggle! Mommy cried tears of joy as she watched Caelin smile and heard his laugh to go with it. The only thing that would have made this moment better is if Daddy was there, too. Caelin has had a few more chuckles since then and Daddy was able to hear some of them! Caelin's happiness amazes us! While Caelin was full of smiles and laughs on Thursday, he had a visitor come into his room. Marc, a nurse from the cath lab who was in there during Caelin's cardiac arrest, stopped in to check on Cael. His last day as a nurse in the cath lab was Friday (yesterday) because he transferred back down to the ER so he was coming to say goodbye. On more than one occasion Marc has been an advocate for Cael and helped take good care of him so we are sad to know he will no longer be up on the Cardiac floor but we are thankful for all he has done. We know he felt bad about Caelin's cardiac arrest and having to go on ECMO; however, I reassured him that if it weren't for the quick and confident actions of him and the team, Caelin may not be alive and would not have been able to make as much progress as he has, have no brain damage, and be laughing the way he is now. So thank you again, Marc! We will miss you but we send our best wishes to you in your new position!
We forgot to mention in the last blog that Caelin had a visit from Dr. Hess, an opthamologist. He came on Thursday to check Caelin's eyes and the obstruction in his nasal passage. It was determined the obstruction is from his blocked tear duct so Dr. Hess showed Mommy how to massage the bridge of Caelin's nose properly to try to get the bottom of the obstruction to open. Other than the blocked tear duct, Caelin's eyes look perfect! His pupils respond to light appropriately, he follows objects well, looks toward sounds, and his anatomy is normal. Of course, we are happy and relieved with this news.


On Friday Caelin had a follow up echocardiogram. The function of his heart is still moderately to severely depressed but it has not gotten worse over the last couple of days. He also had an EKG to check the electrical activity of his heart. It was abnormal but correlated with the function of his heart, so the doctors were not surprised. He had a follow-up EKG this afternoon (Saturday) and the cardiologist said it was the same.


Dr. Quintessenza stopped into Caelin's room on Friday morning to let us know he will be in the operating room with Dr. Chai during Caelin's arch repair. This pleased us very much because we want the best of the best for Caelin. Since many of the doctors are hopeful that the surgery will help his heart function but cannot guarantee it or predict to what extent it will help, we believe Cael will benefit most from the expertise of both surgeon's. We also want Dr. Q to be familiar with Cael's case and anatomy if ever in the future, God forbid, there is an emergency for which Dr. Q must respond. Dr. Chai resides mostly in Tampa and therefore is farther from the hospital and is not at All Children's nearly as often as is Dr. Q. So we are thankful that they can both be in there during the surgery.


Dr. Saltiel decided to put Caelin back on 0.1 mL of Methadone twice daily. He is also not going to wean Cael's Valium. The reason for his decisions is to prevent Caelin from experiencing even the slightest withdrawal (which includes running a fever). If he has a fever, he would not be able to go to surgery on Monday and would have to get blood tests done that take 48 hours for results. So although we do not like him being on the drugs, it is better this way because we do not want anything getting in the way of his imperative surgery.

After all he has gone through and despite his heart's function being moderately to severely depressed, Caelin is so unbelievably happy. Everyone who comes into his room comments on how happy and alert he is and how great he looks... unfortunately, looks can be deceiving. 

As a reminder, tomorrow (Sunday) is the telethon for All Children's Hospital. Caelin will be a featured story at 4:39PM. The news crew will be coming in to Caelin's room to interview us and allow us to tell his story and share his experience at All Children's Hospital. We are extremely excited for this! The telethon is only televised locally; however, they will be streaming live on All Children's Website. Please watch the telethon if you can and support Caelin's story and hospital. We are fortunate to be at this phenomenal hospital and to have a child who is a miracle. 

We hope to post an update tomorrow evening after the telethon but sometimes life gets busy. So in case we do not have a chance to write one, please remember Caelin goes in for his open heart surgery on Monday morning. Dr. Chai will be coming by around 7:00AM to go over the surgery with Mommy and Daddy and Caelin will be going back to the OR around 9:00 AM. Please pray for our baby- your prayers have been so powerful and appreciated and he will need them now more than ever.

One last thing. Caelin offically has his own Facebook page! Many of the information posted on here (his blog) will be more in depth than his blog, but it is just another way to share his story! We plan to put more pictures on his Facebook page. Click here to visit and "like" his page! :)