Where We Belong. Home At Last.

Last night in CVICU.

Happy boy ready to go home!

It's official- we are free!

First evening cuddles in the chair with Daddy!

First walk around the block in my stroller!

Eating sweet potatoes in my high chair like a big boy- right before I tried them with a spoon!

I like my diaper changing table!

Poor Audee- He acts like he is in prison.

Bed time story.

Fell asleep in Mommy & Daddy's bed while we put clothes away.

Nap time for Mommy & Cael. So great to snuggle together!

Sunday's bath.

Tuesday night bath! ... Big difference!

WOW! It has been 9 days since we have updated the blog… time has flown by! I thought about writing a post mid last week but I felt like a post could not be written without hinting at the possibility of Caelin coming home soon. And I did not want to jinx it because, yes, I am superstitious and was terrified of history repeating itself.

So yes, for those of you who did not get the text or Facebook update, Caelin was discharged from the CVICU at All Children’s Hospital on Saturday, August 25^th at 2:15 PM! It is unusual for the unit to discharge a patient over the weekend but the entire staff knew how anxious we were as a family for this date, we live close, and they are 100% confident in our ability to care for Cael as one of us was always by his side and we were both actively involved in his care as an inpatient. Caelin was in the hospital since the day he was born- 163 days. During his stay, his chest had to be opened four times; he had the Norwood Procedure, an emergency bedside reopening to remove a clot on his shunt, his Aorta repaired, and the Glenn. His heart failed after his Aorta was ballooned and required 50 minutes of unresponsive CPR leading to his 46 hour ECMO (life support) run. Not to mention the dozens of procedures in between all these major surgeries including heart catheterizations, CT scans, an MRI, three feeding tube procedures, two Upper GI tracts, EEGs, EKGs and many more. On top of that, he endured a toxic overdose of Clonidine for which he was unresponsive for 24 hours. In five months, our little warrior has experienced more struggles than Mommy and Daddy have combined. Nonetheless, he has come out strong and smiling. The excellent care from the nurses, doctors, surgeons and specialists has provided Caelin the opportunity to live a remarkable life with us and we are eternally grateful. There were times where they expected the worst and yet Caelin prevailed. For this, we must also thank all of his supporters, friends, family members, and God. Caelin is living proof that miracles exist. The doctors did everything they could for Caelin and yet they are shocked at his extraordinary physical and mental progress. We are told that for the path he has gone down, they would never expect Caelin to be where he is today- that others who have traveled similar paths have not come out so “normal/healthy looking.” He is alert, expressive, attentive, listens to conversations, mimics, holds up his head, rolls from one side to the other and has many other “healthy baby” traits. EVERYONE who meets Caelin comments on these. We are blessed, thankful and so proud that he is our son. Each day we see Caelin’s scars on his little body we will not only remember the journey he traveled to get to where he is today, but the ones who helped carry him.

Caelin has adjusted to home life without any issues! We are convinced he was ready to finally come home and that he knows this is where he belongs. Saturday he took a nap in his crib and then one in his playpen. Saturday night he slept in his crib from 10PM until 8AM with waking up only for diapers, binky replacements, and once with gas. He also slept through the night on Sunday and Monday. He is still on continuous G feeds so we have to get up to add milk to his pump throughout the night and give him his medications at 1, 3, and 5.

With being home for just a few days, Caelin has already experienced so many “firsts.” He got to meet the dogs. They love him! They want to constantly be by his side and get so angry when they are locked out of his bedroom. Caelin’s nursery is the one place that is off limits for them for now because we want to keep it as clean and sterile as possible with him being just 2.5 weeks out of surgery and never having any immunizations. Sunday morning he got to go for his first stroll around the block. He looks little in the stroller, but oh so cute! He also got to eat sweet potatoes off a spoon on Sunday. We first started with taste stimulation with his binky but he was just licking it off the binky instead of sucking on it. So we experimented with the spoon by first letting him hold onto it and helping him put it in his own mouth. Then we put little drops of sweet potatoes on it and he ate it off. He ended up eating 1.5 mLs, which is a miniscule amount for a normal baby, but great progress for Caelin who has such an intense oral aversion. He had his first real bath on Sunday and he detested it. He screamed through the whole thing, even with his binky. At the end, he rolled to his left side and closed his eyes- apparently he was too tired for a bath. So we gave him one on Monday when he was more awake and happy and he loved it! He held onto a toy, was full of smiles and even experimented with splashing with his right foot. He got a bath before bed tonight, too, (Tuesday) and again he was elated and full of wiggles! Because tropical storm weather was expected to hit the Tampa Bay area, Pinellas County Schools got cancelled on Monday. This means Daddy got to spend three days with us in a row, has to work four, and then gets another three day weekend. This could not have come at a more perfect time!

Today was Caelin’s first cardiology outpatient appointment. It was scheduled with Dr. Stapleton at 2:00 PM. Not only was this his first appointment but also his first “outing.” This means Mommy had a lot of preparation to do. I had to get his “normal baby” stuff in order plus his medications, formula, and feeding pump. It sounds a lot simpler than it actually is. But I was successful and we were out the door at 12:50 PM! This put us arriving at his appointment at 1:35 PM with a stop at Dunkin Donuts. That’s right- he had his first drive thru experience! Not sure he thought much about it though… he fell asleep. We lucked out with this kid in all his “normal baby areas,” for real. He is a great sleeper, cries only when he needs something and is easy to console, falls asleep during car rides, loves his binky, and is just such great company. Thank God for this because all of his “heart baby” issues take quite the emotional and physical toll on all of us. Back to the appointment- it went well. Caelin slept until they called us back at which point I pulled him out of his car seat to change his diaper and undress him. This made for one unhappy baby. So being naked, he got weighed on the hardest surface ever made by man lined with a flimsy paper towel. Then he was measured on the same hard surface without the paper towel, so it was cold. He weighed 5.480 kilograms and I think she measured him at 60.5 cm. I trust the scale but am not sure his length is correct as he was flailing and pulling so much (He was 62cm last week). At this point, Caelin is near purple, flailing his limbs and screaming so hard his screams were frequently silent. Afterward I held him and wrapped him in a blanket so he would not get cold. The nurse’s assistant hooked Cael up to the EKG machine while he was in my arms, and wrapped a pulse oximeter around his foot to get his oxygen saturation (90-92) and his heart rate (137-141). Then she and the nurse took his blood pressure and dopplered his pulses. Although he was in my arms with Mr. Horns (his triceratops Wubbanub), he was one unhappy baby. But even with him screaming, his systolic blood pressure was only 100- that is an improvement! Since he just got an echocardiogram Friday, he did not need one today. He will get one at his next appointment in four weeks. So skipping the echo room, we went into the exam room where we waited for Dr. Stapleton. When he came in he congratulated us on getting out of the unit and did his assessment. He, as with everyone else, was very satisfied with Caelin’s health and his progress. He told Mommy & Daddy that Cael looked great, that he wants Cael to get Lasix only twice daily instead of three times, and to e-mail him or call if we have any questions or concerns before his next appointment in two weeks. My how amazing it feels to have outpatient visits! After the appointment was over we had to go visit the CVICU (and drop off the parent badge that Daddy left at home on Saturday so nurse June did not get in trouble for not collecting it). We got to see Cael’s favorite nurse, Carrie, his discharge nurse, June, the PCA, Nicole, our favorite chaplain, David, and a few other people as they trickled past. Caelin was happy at first but he got very upset with Carrie when she pulled him out of the stroller to hold him for the first time without any lines attached- apparently he was afraid she was taking him back into the unit. ;) He ended up pooping out of his outfit so that called for a diaper and clothing change- silly baby! Good thing Mommy came prepared with a back up outfit! With this, we said our goodbyes and headed back home. Overall, it was a very nice first outing (even if it was at the hospital we had just left).

We will do our best to continue to write updates… They may be more spaced out and a little less detailed than this one. We wanted to give you all an idea of what it has been like for him and us being at home as a family. We are so blessed to have you all in his life through his struggles; we could in no way leave you completely out of his happiness and growth at home! Thank you all so much for following our little warrior's story and for loving him from afar! Every thought, prayer, and blessing you have dedicated to Caelin has had an impact.