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. 

G Feeds. Hoping for a Mic-Key

With my aunt on my 5th month birthday! 

My uncle Tristan put me to sleep!

Last snuggles before departure.

Quick- press the button & make a break for it!

Bath time!

Check out these muscles!

Eating my block cuz it's what a 5 month old should do!

Enjoying my teething ring for the first time! Helping my teething gums feel better!

Thursday Caelin started trialing G feeds! He started on his full rate (27mLs) at 10:10 AM and went until 2:30 PM without so much as a gag! It was surprising and a relief! Since he did well with four hours Thursday, he got to try six hours Friday from 12:00 PM until 6:00 PM. He then was back to J feeds from 6:00 PM until Midnight and at Midnight he switched to G feeds again. Both times he did EXCELLENT! Because he did well with 6 hours on G/6 hours J they bumped him to 8 hours G/4 hours J Saturday morning. Then this morning at 10:00 AM he started full continuous all G feeds! With all this time on G feeds he has only had 3 spit ups and they have all been very small, mucousy, and associated with burping/venting (like a normal baby). With all that said, he will most likely be getting a Mic-Key G tube to replace his current feeding tube early this coming week (Tuesday-ish).

His Milrinone has been weaned to 0.25 mcg/kg/min. The next step is turning it off! But the doctors do not want to turn it off until after he gets his new G tube placed- they would like to give his heart a little extra assistance during and immediately after the procedure. So hopefully after he gets his new feeding tube, it will only be a day or two until his Milrinone is off. After the Milrinone has been off for a couple days, the cardiologist will most likely order an echocardiogram to check the function of Caelin’s heart without the extra assistance of the drug.

Caelin still has to get his pacing wires and LA/RA/Common Atrial line (whatever they are calling it these days) out. Laurie, nurse practitioner, told us these two will come out together once he no longer needs central access. The sooner, the better if tolerated because it will reduce the chance of infection.

One thing we discovered right after the last blog entry was posted- Caelin is TEETHING! It is official… his VERY FIRST tooth is coming in on his front, bottom, left side gum and already broke the skin. We suspected he was teething but it was hard to really tell before this point. We cannot believe his first tooth is already on its way! Hopefully we can start him on some baby food this week, as his body seems like it is getting ready for it! The past couple days we have been trying to get him interested in teethers and he wanted nothing to do with them. Then tonight (Sunday) after we got done Skyping with family in Michigan, Caelin decided he wanted his teether. The teether was not frozen because it had been sitting out for a little while, so it was softer and squishy. Being so young and new to having things in his mouth, Cael seems to prefer this texture. Once he gets older I am sure he will love the teething rings to be frozen. J

On a sadder note, late Friday afternoon Uncle Tristan and Aunt Cassie flew back home to Michigan. Before they left, they got to take Caelin out of his room for his first ever venture in a stroller! Cael loved being pushed in the stroller through the CVICU unit! We even got to take him out to the elevators and he got to look outside- it was cloudy but still much brighter than what he is used to in his hospital room. We miss you so much Cass & Tristan- cannot wait for you to come back down again!

We continue to anxiously await the day we no longer have to live in the hospital. But the first priority is making sure Caelin’s heart is healing well and functioning normally on its own. Thank you so much for your continued support! We appreciate all that you are doing and have done for our powerful warrior and our family. God has blessed us!

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5, 4, 3, 2, 1, 0

Right before they removed my cannula! I suspected something great was going to happen!

First picture after getting his nasal cannula removed!

Best. Smile. Ever... Entered the Gerber contest with this pic!

I am five months old? WOAH! 

Meet Horns.. my new Wubbanub! He is a Triceratops! ROAR!

Mommy & Me on my 5 month birthday!

Dad

5 Months Old

4 Open Heart Surgeries

3 Surgeons' Expertise

2 Bright Sparkling Blue Eyes

1 Little Warrior

0 Days Home… But Cael is going to change that sometime soon. Hopefully.

It has been a few days since the last update because things have been very busy around here. Caelin has been pretty temperamental with this surgery, as with the other surgeries; however, this time it is different because he is extubated and can be held. Because he looks so great, there have been times where we forget he just had surgery a week ago. So we have found ourselves moving him too much or asking him to use too many muscles. As a result, he ends up sore a few hours later or the next day. This was the case with Tuesday and Wednesday. Tuesday he had a superb day! He was full of smiles, laughs, giggles, and the determination to play and be held. We think this caused him to be fussy for most of the day Wednesday- his body was overworked and sore.

We have also been spending lots of time with Uncle Tristan and Aunt Cassie because they leave tomorrow. :’( We love having them down here and are getting sad knowing we have to say good-bye tomorrow afternoon. We really wish Caelin was coming home before they fly back to Michigan but hopefully they will come down again soon when he is at home.

So besides trying to keep Caelin calm, comfortable, and happy so he can heal well, the doctors have made a few changes. Sunday he got his chest tube removed at 7:30AM. Later that morning his nasal cannula was removed for the first time in nearly five weeks! Since then he has been on room air, problem free! It is so great! His lasix was also changed from Q6 IV to Q8 oral. So the only IV medication he is on is Milrinone. Tuesday they came down on the Milrinone from 1 to 0.75. They were going to go down on Monday but his pressures were high so they wanted to wait another day. Caelin got an echocardiogram Wednesday and his heart looks great! Dr. Nardell, cardiologist, is very pleased with the way his heart is pumping. Because of his stellar echo, they reduced his Milrinone again to 0.5. His blood pressures are still high but they are adjusting his oral medications to try to control them. His Clonidine is at 30 mcg per dose and his Captopril is 0.5 mcg per dose; they still have room to go up on each medication but a higher dose of Clonidine lowers his heart rate and a higher dose of Captopril raises his Potassium level. This whole balancing act is nothing new, but nonetheless, it makes medication adjustments more difficult. Caelin is still on Milrinone, he still has his RA line in. He also still has his pacing wires because it always makes the doctors nervous pulling them too soon; we are guessing he will keep the pacing wires until he comes off Milrinone and that they will come out with his RA.

Caelin has been on full feeds since Saturday night and Sunday his calories were increased from 20 to 24. As long as he gains weight well, they will keep his Elecare fortified with 24 calories instead of increasing to 26. At the end of last week we were under the impression he could get a Mic-Key GJ button to replace his Cor-Pak GJ feeding tube but that is not the case. We spoke with GI and they told us they do not do Mic-Key GJ buttons on infants less than 6 kilograms because they are often too big for their small intestines and the J portion has been causing part of the small intestines to die off. We definitely do not want that. So we are trialing him on G feeds to see if he will tolerate the formula going into his stomach instead of passing his stomach, straight to his jejunum (small intestine). We waited to try G feeds because he exhibited several signs of acid reflux in the past (avoid aspirating formula – going into his lungs if he were to spit it up). Also they did not want his heart to have to work harder to feed his entire digestive track.  He started G feeds on 27 mLs/hr at 10:10AM this morning. It is currently 11:45AM and he is doing great! They plan to have him try four hours today and if he tolerates it, they will let him try 6-8 hours tomorrow. If he continues to tolerate them, they will work up to stomach feeds all the time and he may get the regular Mic-Key button next Monday or Tuesday. Please pray that he will tolerate G feeds! J Also, once the Milrinone is off, we have been given the green light to begin spoon-feeding. He will start with sweet potatoes and apples! Hopefully he likes it!

We have not been given a time frame for potential discharge as they are still monitoring him and adjusting major medications. But please continue to pray for his strength, healing, and recovery! Thank you for your constant support, prayers, and positivity- they make a different for Caelin and they make a difference for us. We could not be more blessed!

The Glenn: Post-Op Day 1 & 2

Getting ready to head back to the OR.

Daddy giving "See you later" talk, hugs & kisses.

Mommy giving "See you later" talk, hugs & kisses.

Daddy with Caelin right out of surgery.

Mommy with Caelin right out of surgery.

Caelin immediately after his Glenn. Thursday 8.9.12

8.11.12

Cassie encouraging Caelin to kick the blocks.

Daddy talking with Cael as he hits and kicks his toys! 

Friday Morning Bright Eyes.

FIRST SMILE after his Glenn!

We are so blessed that Caelin was able to go to surgery on Thursday. The baby getting the Norwood Procedure that replaced Caelin as first case ending up having complications which prolonged his/her surgery and the baby came out on ECMO. If Caelin had not gone on Thursday, he would have definitely been pushed to next Tuesday. So thank you Dr. Chai and All Children’s staff for rearranging the schedules so he could go sooner!

Right out of surgery, Caelin was stellar! Mommy and Daddy spoke with Dr. Chai before being able to see Caelin and Dr. Chai told us everything was straightforward and free of complication. Cael tolerated being extubated in the OR immediately after surgery so when he came to the room he was vent free and on a nasal cannula at 2 liters of flow and 100% oxygen. We finally got to see him around 12:35 PM. For most of the afternoon Caelin was awake but calm and comfortable. He gets Morphine as needed and IV acetaminophen every six hours. He also got caudal anesthesia back in the OR which lasted for about 24 hours. The anesthesiologist gave him the injection below his umbilicus because the Morphine and Fentanyl was not enough. Like we said with his last procedure, he seriously needs horse tranquilizers to settle him down. HAHA … In all fairness, Daddy did warn the anesthesiologist before rolling Caelin back into the OR. ;) So all of his numbers and arterial blood gasses looked great immediately after surgery- the numbers reflected those of an infant who just endured open-heart surgery. Within 24 hours post-op, his numbers and gasses normalized, indicating his body is quickly recovering from surgery. Over night he did well. Although he was a little fussy, he slept for the most part.

Early Friday morning, pain started hitting Cael. He was fussy all morning and did not want Mom to leave his bedside from 9:00 AM until 12:30 PM when Daddy got to the hospital. He continued to get Morphine and IV Tylenol but they were not stopping the pain enough.  For those of you who don’t know, it is really common for babies to have a constant headache after their Glenn. The doctors attribute this to the change in blood flow with his heart’s new physiology. His body will adjust within a couple of days and his headaches will subside. Because of his pain, his blood pressures were high and he had to go to 4 of Nitroprusside and 0.7 of Precedex. Thank goodness for Cael’s nurse, Reaganne, who suggested we try ice packs on his head. BRILLIANT! After putting the first one on he calmed instantly. So with this now added to help his headaches, his pain seemed much more tolerable and he was more calm. And of course his binky and Wubbanub are his BEST FRIENDS! Thank God for pacifiers. His morning labs showed his Hematocrit was 30, so he got a blood transfusion of 75 mLs. Before his blood he was on 70% oxygen at 2 liters; after, he was down to 30% oxygen and 0.5 liters! Amazing! They planned on restarting his oral blood pressure medications to get him off the IV ones; however, his BUN was at 21 and his Creatinine was 0.32 so they decided to increase his IV Lasix to Q6 to help him pee out any extra fluid and get his kidneys working well. He was started on Pedialyte at 5mLs an hour and orders were written to increase by five every four hour up to fifteen. Once he was on Pedialyte for four hours at a rate of 15mLs/hr, they switched over to Elecare 20. Overnight he remained at 15mLs/hr of 20 calorie Elecare and tolerated it well. Friday he also got out his CVL (central line) because he does not need the extra access and his Foley catheter to prevent infection. So overall, he had a great first full day out of surgery.

Friday night he was pretty fussy from pain. Everything that helped in the afternoon also helped at night but they of course can only help so much. So what he really wanted was Mommy or Daddy to be next to him as he slept lightly. Over night he started having a little more difficulty breathing; he had retractions in his abdomen and nasal flared as he inhaled. To help him breathe easier, the nurse went back up to 2 liters of flow. We are guessing he required a little extra assistance because he had been upset for so long on and off and his lungs and body were just a little tired because by mid-morning he was back down to 0.5 liters.

Dr. Pettigrew gave orders to our nurse this afternoon to keep Caelin on 30% oxygen and 0.5 liters. Well as we all know, Caelin is the boss. So, he decided to rebel. But he FINALLY rebelled in a good way. His saturations were in the 90s consistently this afternoon and ideally they want him below 90. As a result, his oxygen got weaned and he is now on 21% at 0.5 liters! Our little man is remarkable! All of his GI meds were restarted today (Prevacid, Zantac, Colace, and Reglan) along with his Captopril for blood pressures. With adding the Clonidine yesterday and Captopril today, he is completely off both Nitroprusside and Precedex! He is still on Milrinone at 1 and IV Lasix every 6 hours. They plan to keep him on Milrinone for at least a few more days. Dr. Wilmot mentioned ordering an echocardiogram for Caelin early next week. Another great marker of progress is that by 9:00 PM he will be on full feeds (27mLs) at 20 calories! GO CAEL! They did not want to push him too hard too fast, so they will start to fortify his formula to increase his calories tomorrow.

Caelin has gone through a couple fussy spurts today (Saturday) but for the most part he has been awake, alert, content, and comfortable. He has even started to play with his blocks and rings hanging above him. He loves kicking them and batting at them with his arms- he is not going to let his chest tube, freshly-opened chest, lines, or headaches get in the way of play time! Mommy even got a couple of little smiles in the late afternoon/early evening. It is better than a breath of fresh air to see Caelin doing this well. We are long over-do for some good news. Also, we are really hoping he will get his chest tube out tomorrow so we can hold him! We hope he will come off oxygen tomorrow, too, so we can see his face again (it’s been almost 5 weeks)!!!!!

So needless to say, after constantly making the doctors walk on pins and needles, scratch their heads, and hold their breath… Caelin is finally on a steady path of recovery. The doctors and Mommy and Daddy are all extremely pleased with the progress he is making! Thank you all for loving our son as if he were your own and sending prayers in his name. We will never be able to thank you enough for your support!

THE GLENN!!!!!!

Aunt Cassie putting me to sleep.

Sitting up/ tummy time.

All smiles!

Uncle Tristan.

Family love.

Kisses the night before surgery!

Well today is the big day. The day we have been waiting to come for almost 5 months. Today, Caelin got his Glenn. He went back at 7AM and Mommy received a call at 9AM from the surgical PA, Mary Ann, saying his surgical lines were placed successfully, Dr. Chai began operating, and they were getting ready to put him on bypass. At 10:13 AM we received a call saying Dr. Chai finished operating and Dr. Galas, the cardiologist, was in there measuring pressures and checking everything over. Once he gives the green light, they will close Caelin up, take him off bypass, and begin recovery back in the OR. Then 11 minutes later, Dr. Galas called to inform us everything looks great. At the same time, Mary Ann from the OR was calling Mommy but she didn’t answer. Mommy walked out of the waiting room to find Dr. Galas right outside. So we hung up the phone and began going over Cael’s current position in person. At this time Mary Ann called again to let us know Dr. Chai closed Caelin up and was on his way out speak with us. Dr. Galas told us his part and would let Dr. Chai fill in the details. When Dr. Chai came out, he said everything went straightforward and Caelin was on bypass for less than an hour. He said he really did not have much else to say as he is very pleased with the outcome of his surgery. We are so excited and relieved. We hope Caelin continues to do well with transitioning out of surgery and into recovery. I wanted to write an update now because the plan is for Caelin to come out extubated, which means he will be awake, angry, and in pain so I may not have time to update the blog afterward. I will, however, try to post an update on how Caelin is feeling to Facebook because it is quicker. For those of you who have not yet been to his Facebook page it is www.facebook.com/caelinsjourney .

Just to recap this weeks events:

Everything in the cath lab went perfectly. His pulmonary pressures looked great as did his pulmonary arteries and aorta. The doctors could not see anything on the cath that would explain Caelin’s hypertension or justify his oxygen requirement, expect his shunt tapered. With this, everyone agreed his heart was ready for surgery and to keep the scheduled Friday morning date. He came out extubated and had no issues after the cath- this was a huge relief as the last visit to cath lab was traumatizing.

Caelin having his surgery today came as a complete surprise to us. As most of you know, his surgery was initially scheduled for tomorrow, Friday, August 10^th. Well this past Tuesday, August 7^th, Jenn (a PA) came in to tell us, “There has been a change of plans.” Mommy was the only one at the hospital with Caelin, as Daddy was with Cassie and Tristan at MOSI. Jenn explained to Mom there had been three new babies born, all requiring surgery soon. Because of this, a newborn had to have a more complex surgery (later we found out it is the Norwood) than Caelin’s Glenn, so they were pushing Cael’s surgery back to Tuesday, August 14^th. This was disappointing news and immediately Mommy expressed her frustration. Jenn offered to relay our concerns to Dr. Chai and to leave him a message asking him to call us. Around 5 PM the hospital room phone rang. Mommy went to give the phone to Daddy and he told her to talk to him, that women can be more convincing (as it turns out, he may have been right…). I shared with Dr. Chai all of our valid concerns. At this point, Caelin was on 60% oxygen and had required oxygen support for 4 weeks without the doctors having an explanation. He has had his RA line in for 9 weeks, which has only one working lumen, and with each passing day his risk of infection gets a little bit higher. In four days, Caelin could catch this cold virus that seems to be making its way around recently. His trip to the cath lab back in May was held off a few extra days, which caused his heart to get sicker and be unable to handle a big procedure and therefore, contributed to his heart arresting, requiring 50 minutes of unresponsive CPR, and ending up on ECMO to survive- we did not want to wait for his heart to get worse in any way… we wanted it to be as strong as possible for surgery. We have been at the hospital since Caelin was born, almost five months, and have highly anticipated this day. Once we got this date, we had our heart set on it and it is painful to think it would get pushed back four days. That is four more guaranteed days in the hospital for Caelin and us and we are ready for him to start recovering so he can be stable to come home. Also, Daddy has to return to work next week and he is working at a new school. He would not have been able to be at the hospital with Mommy while Cael was having surgery and this is extremely important to both of us. Thank goodness Dr. Chai listened to Mommy and heard the pleading tone of her voice. He agreed with everything she said and offered to plan to have Caelin be the second case on Friday after the Norwood. Mommy asked if there was any way Caelin could go on Wednesday or Thursday and Dr. Chai said it would not be possible with the schedule. Settling for 50 % chance Cael would be second case on Friday we were upset, disheartened and realistic- no one was a fan of Cael going to surgery on a Friday afternoon. We knew in our heads it would not happen but in our hearts we wanted to believe.

Well, Wednesday afternoon at about 3:00 PM, Jenn came back in saying, “There’s been a slight change in plans.” Sean and I looked at each other pessimistically. Upon these looks Jen blurts out, “Tomorrow.” Struck with disbelief we asked, “Really?” After affirming it, we told Cael the good news and celebrated in our room. A few minutes later, Laurie the nurse practitioner came in to see us. She told us she knew we heard the news because she saw Mom from the hallway and she reminded her of the lady on the Orbitz commercial. Guess Mommy looked a little excited. J We do not know the details of how everything worked out but if it were another child’s surgery that got pushed back, then we do feel bad and hope that child and his/her family is alright. But at the same time, we are the only advocates for our son, he has been here a long time and he needs this surgery before he can progress. We are beyond appreciative for everyone who helped make this schedule work for Cael to get in this morning.

Thank you all for following Caelin’s blog and progress and for loving our son so much. We are grateful for your thoughts, prayers, and positive energy. Thank you, thank you, thank you from the bottom of our hearts!!! We love you!

Getting Ready for My BIG Week

Having a serious conversation with Aunt Cassie. 

To put it simply, I'm a stud.

On Thursday Caelin’s pressures were stable on 1 mcg/kg/min of Nitroprusside; however, right at shift change his pressures started lowering. By 8:00 PM he was off the NiPride and at 9:00 PM nurse Stephanie decided to hold his Captopril because she was afraid his pressures would get too low. By 11:30 PM his pressures hit 100 so they gave the Captopril at Midnight. Since this put him off his normal schedule, the day nurse on Friday held his 8:00 AM dose to give one at 1:00 PM. Luckily, his pressures behaved and allowed for this to happen. Because he so suddenly was able to come off NiPride after being on it for three weeks and having no recent changes to his oral medications, the cardiologist, Dr. Decker, ordered an echocardiogram. The echo showed no changes to Caelin’s heart. He still has great function (for him) and mild/moderate Tricuspid Valve regurgitation. We were relieved to find out his function still looked good because we want his heart strong for his heart catheterization on Monday, August 6th and his Glenn on Friday, August 10^th. So his pressures were in the high 60s to 90s (systolics) all of Friday; then early Saturday morning around 6:30 AM his pressures were in the high 50s/low 60s. Because of this, they decreased his Milrinone drip to 0.75 from 1.0. This helped raise his pressures and later in the afternoon they had to put his Milrinone back to 1.0. 

Daddy finally felt better on Saturday and he returned to the hospital! Caelin missed him so much!! Needless to say, they had a lot of cuddle time together. Mommy even went home with Aunt Cassie and Uncle Tristan and cooked homemade meatloaf, mashed potatoes, and corn; so during this time, Daddy and Caelin had some great father-son time!

Recently Caelin has been falling asleep between 8:30PM and 9:00PM, sleeping through the night, and waking up between 5:30 AM and 6:30 AM. When he awakes, he is INCREDIBLY happy! Saturday morning he was kicking, smiling, talking and waving his arms incessantly. He had so much built up happy energy that he let out a HUGE laugh/scream! He has been giggling/cooing for about two months but this was the first time he ever made a sound like this and it excited Mommy! His nurse, Nick, even got a kick out of it! Then he did the same thing this morning for Daddy! SO CUTE! Mommy cannot wait to record it and share it for the first time.

So overall Caelin has been a VERY happy boy. He loves to play, kick, talk, laugh, bounce, swing, cuddle, sit up, lay on his tummy, and stand up while being held. He is easily entertained and easy to cheer up. He truly is a wonderful baby! Mommy & Daddy are blessed in every way.

My new outfit! Check out my kicks. :) 

I love being cute! 

Caelin, Daddy & Aunt Cassie

Mommy, Caelin & Daddy

Uncle Tristan, Mommy, Caelin, Aunt Cassie, & Daddy

Uncle Tristan, Caelin & Mommy

Tummy time! 8.5.12

Uncle Tristan patting my back to help me enjoy tummy time. 

Aunt Cassie putting me to sleep.

So for this week, Caelin has his heart cath and surgery. He goes to the catheterization lab with Dr. Stapleton tomorrow, Monday, August 6^th, at 2:00 PM. He was initially scheduled for 11 AM but he was bumped for a cath-assisted surgery. Call Mommy superstitious, but she is apprehensive about him going to the cath lab on a Monday at 2:00 PM. For those of you who do not remember, Caelin went to the cath lab on Monday, May 21^st at 2:00 PM, went into cardiac arrest and came out on ECMO. Caelin’s heart is much stronger now, but nonetheless, Mommy is terrified of history repeating itself. We have faith our son will be strong and stable during and after the cath lab and then again on Friday for surgery. He is the first OR case on Friday, August 10^th, which means he will go back there between 7:00 AM and 9:00 AM. We are excited and nervous for this surgery. We are hoping and praying this physiology agrees with Caelin’s body more than his Norwood physiology has. Immediately after surgery Caelin will get an excruciating nonstop headache for a couple days; this is referred to as “The Glenn Head.” It is caused by an increase in blood flow to his brain from the new physiology. We are told he will cry inconsolably, which makes us sad, but he will be given Tylenol and pain meds to help him get through it. This week is momentous for Caelin. Thank you for your continued prayers, love, and support!