Miracles Happen.

EEG wires removed- so nice to rub his head again.

Talking to Great Aunt Sheri.

Sleepy, snuggly boy.

Friday’s brain ultrasound report came back normal. The report read that the previous subtle asymmetrical increase echo in his right temporal lobe was artifact. We were all happy with these results and had no direct medical concerns but the doctors still wanted to get better pictures for informational purposes. With Caelin’s impressive stability, they ordered him to have an MRI before he is extubated (taken off the ventilator). He was supposed to go down on Saturday at 2:00 PM but as Cael’s nurse was getting prepared for the trip downstairs, they called to reschedule for Sunday at 9:00 AM. Also on Friday, the EEG wires were removed from Caelin's head- the improvements were favorable and the neurologist felt his brain activity no longer needed to be monitored.

Caelin’s echocardiogram from Friday showed strong heart function. His heart is squeezing tightly but the Coarchtation (obstruction in his Aorta- aka Coarc) still has created a 20-30 mm pressure gradient. This Coarc needs to be fixed soon. Ideally they would like to wait until his Glen in August or September but Caelin does not have the ability to wait that long. So their second ideal situation is to wait two weeks and address it surgically for it to be a definitive fix. If he cannot wait two weeks, they will fix it with a stent that will be intermittently dilated as his body grows. The doctors have a weekly conference- this week it is on Tuesday because of Memorial day- and Caelin is on the list of patients to be discussed. So hopefully next week we will have a better idea of what Caelin’s heart can sustain and what their plan is to fix his Aorta.

So Friday night, all day Saturday, and into Sunday morning Caelin was stable. He was awake, alert, interactive with visitors and even began smiling again. Every doctor, nurse, respiratory therapist, and CVICU staff member marveled at Caelin’s miraculous improvement. Each time our eyes met Cael’s we felt comfort and love permeate throughout our bodies. This feeling and connection with our son after the event we experienced on Monday is unlike any other.

Caelin went down to the MRI around 9:30 AM on Sunday. Mommy and Daddy were nervous for this procedure because although it is supposed to be straightforward we were afraid it could create another incident like Monday’s (Considering the cath lab was supposed to be a relatively straightforward procedure). Caelin needed to be put on cardiac anesthesia because he was wide-awake during his travel downstairs. Mommy walked backwards out of the room, keeping her eyes on Caelin as Dr. Rodriguez carried him to the MRI machine. The doors slowly closed and locked in front of Mommy’s face and tears began flowing. Just as she looked over at Sean, Dr. Rodriguez yelled something that sounded like “Code.” Code means emergency. As an immediate response Mommy’s knees got weak, her heart started racing, and she couldn’t breathe. She tried pulling on the doors but to no avail. The nurses and Daddy came over to Mommy to calm her down- after realizing everything was okay in the lab, Mommy was directed to the waiting room with slight resistance. Later, Dr. Rodriguez told us he said, “It’s Cold,” referring to the temperature of the room. However, combined with his deep, loud voice, accent, and Mommy’s fears- she heard the worst. Thank goodness Cael made it through the hour-long procedure just fine. We got the results and they show that Caelin did not sustain any damage from lack of oxygenated blood flow during his cardiac arrest and 50 minutes of CPR. But it did show a possible tiny brain hemorrhage between his brain and skull- this is an unusual place for one, so they are hoping it is artifact. Because of this, he will have a repeat MRI tomorrow to check just that small part. This should take approximately 7 minutes so he does not need to have anesthesia or be intubated. The MRI also showed there is some sort of spherical obstruction in Caelin’s right nasal cavity. Because of its perfect spherical shape, the doctors believe it to be a benign polyp/cyst but an Ear, Nose, and Throat specialist will be by today or tomorrow to check it out. Dr. Pettigrew, the head intensivist of the unit who was on all week, is shocked, to put it plainly, that Cael did not sustain any brain injuries that they can detect and that Cael and his numbers are near perfect for his condition. We all truly are so completely astonished with Cael’s improvement in just a week! Our little guy never ceases to amaze us, or the whole hospital staff! 

Leaving the room to go to the MRI.

Caelin on his trip to the MRI lab.

With all that said, Cael was extubated this morning and boy is he ever glad to have that tube out of his throat! He was supposed to be extubated yesterday but the anesthesia from the MRI made him too sleepy so Dr. Pettigrew felt more comfortable waiting until this morning. So he no longer has the breathing tube in but he does have a nasal cannula. It is protocol for children to get a cannula placed immediately after extubation to help them progress back to normal, independent breathing. One good thing is that he is stable on just 5.0 liters of flow at room air (21% oxygen) so the de-cannulation process shouldn’t be too long, hopefully. 

Extubated! Just on 5 liters of flow through the nasal cannula! 

Doing the "Happy Dance" after being extubated.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 

On Thursday night one of the techs, Misty, asked Mommy if she ever read the book, Heaven is For Real: A Little Boy’s Astounding Story of His Trip to Heaven and Back by Todd Burpo. After saying, “No, I have never even heard of it,” Misty gave Mommy her Nook with the book downloaded on it. If it had not been such an emotional and relevant story, Mommy would not have put the book down before finishing it. It was just too soon after Cael’s incident to read it all the way through- Mommy had to take breaks to relieve her overpowering thoughts and emotions.  In the book, the father, Todd, tells Colton’s story. Colton talks about seeing his dad praying in the waiting room during his operation and shares how God told him he could not stay in Heaven because He was answering his (Colton’s) dad’s prayer. Also, Colton tells of meeting his miscarried sister and shares many other remarkable particulars of what and who he saw while in heaven. 

One part that stuck out to Mommy is about the power of prayer. Todd writes, "I thought of the times where the Scripture says that God answered the prayers, not of the sick or dying, but of the friends of the sick or dying..." We are so thankful for all the love and support given to our family- all the prayers and thoughts from family, friends, and fans from around the world, the dedication from the hospital staff, and the spontaneous, heart-driven visits from Great Aunt Sheri, Great Aunt Keetha, and Aunt Cassie! We could not ask for more selfless, wonderful people in our life. Thank you for your genuine generosity & love. Never underestimate the power of prayer.

Whether or not you believe in God, the details this little boy shares about his experience are inexplicable and astonishing. This story also accounts for the normality of questioning and doubting God and His existence during heartbreaking and devastating times… but it also draws light on the reality that miracles can and do happen.

Off ECMO & 10 Weeks Old

Aunt Cassie & Cael.

Family Love.

More Family Love.

Our 10 week old fighter!

Baby Cael. <3

Caelin came off ECMO Wednesday evening- the cannulas were pulled out at 4:56 PM. The doctors and nurses prepared us for Caelin to have a night with instability but he did great! Over night and into the morning the one major concern was the pulse in his right foot kept coming and going. There was a decent amount of time that the night nurse could not feel it. She changed the dressing over his Arterial line and site from the cath lab because the old dressings were soaked with blood; after this his pulse returned. Also, his hematocrit and hemoglobin were down a bit so they gave him 80 mL of blood. 

I have to say- the nurses, doctors, and staff are amazing at All Children's hospital. Caelin has had so many people coming into his room just to show him some love and check in on him and us. On Thursday morning alone he had four nurses, three techs, two perfusionists, three cardiologists, the intensivist, the nurse practitioner, the neurologist, the occupational therapist, the physical therapist, and skin team stop in. This does not include all the people who came in and out Monday evening, all day Tuesday, and all day Wednesday offering love, support, and help in any way. We are so blessed for Caelin to be at this hospital for his care.

Thursday morning Cael had a cranial ultrasound that revealed he had a very subtle asymmetrical increase echo in his right temporal lobe which could be possible artifact or due to underlying edema. Despite this, the neurologist, Dr. Andrews, said he has had favorable EEG improvement. This morning at 10:45 AM he had repeat ultrasound but we are still waiting for the results. If the area looks the same or worse, Caelin will be making a trip downstairs to get a CT scan for a better picture. We have not discussed what interventions would be taken if this area is not artifact or if it does not self-correct as Caelin's body heals from his cardiac arrest on Monday.

The doctors wanted Cael to just have a day of stability and as little stimulation as possible on Thursday (yesterday). They did not order an echocardiogram because they wanted to leave him alone as much as possible. So he had an echo this morning at 8:30 AM and we are still waiting for the cardiologist to analyze it and discuss his report with us.

So the changes made yesterday were: his Fentanyl (pain med) was lowered from 3 to 2 mcg/kg, they got rid of his Vec drip (paralytic), increased his HEParin drip (anticoagulant) to 21 units/kg from 17, came down on EPInephrine (adrenaline) to .05 mL from .08, continuing TPN and lipids for nutrition, and he went down to room air on the ventilator (21% oxygen). He had a very stable day and night (into Friday morning). Around 10:00 PM his heart rate lowered, between 110-120, and his oxygen saturation went into the mid 90s. This situation made Mom and Dad very nervous because these were the conditions that started leading to Caelin's heart failing last week. We know his Aorta is still a problem that needs to be addressed soon and we are terrified of history repeating itself. After almost 45 minutes his heart rate went back up into the 120s and his oxygen saturation returned to the 80s. His lactate (checks level of lactic acid- which is a good indication of the heart experiencing stress) test came back at 0.8 which indicates his heart was not under stress. This number combined with the rest of his blood gas results showed that his heart is doing fine. - This was a relief to Mommy & Daddy but it is still something that is being monitored closely.

The only changes today are going down on 26 breaths/minute on the ventilator and 0.03 on EPInephrine. They are keeping his pain medications the way they are because he is actually quite awake on them. He was awake this morning for almost two hours, in addition to being awake on and off through the night. This morning the lights were off and he had his eyes wide open. He was looking all around and even moving his head a little bit. He continues to respond to Mommy and Daddy’s voices. This morning he even started looking back and forth at Mommy on his right side and Daddy on his left. As Mommy talked to him, he looked at her. Then Daddy would talk to Cael and he would move his eyes to focus on him. It is so great seeing Caelin making this progress back to where he was against all odds! Amazing and miraculous are becoming understatements for him- there really are no words to describe Caelin’s personality, triumphs, and how lucky & proud we feel as parents to have him as our son.

Thank you for continuing to pray for Caelin. Every prayer, thought, & bit of positive energy has helped him recover to where he is today and will continue to help him recover!

Cath Lab, Heart Failure, & ECMO

As many of you know, over the weekend Caelin’s heart function digressed. He was a very happy boy and we had lots of fun together taking pictures, cuddling, talking, reading books, listening to music and everything else! We had a fun photo shoot of him during tummy time on his jungle themed Boppy! Monday morning he was still a happy boy. Mommy and Daddy got lots of smiles before he was scheduled to go back to the cath lab for his procedure. Over night we noticed his heart rate slightly dropping to the low 100s along with his blood pressure. Daddy expressed his concerns to the doctors during rounds in the morning but they said they were not as concerned as they would be if they were too high. Their reasoning was if the heart was under stress they would be higher. We respect that; however, we thought it they were too low, it could be an indication it is failing. But apparently they did not feel the same way.

Bath Time!

Tummy Time!

Sleepy time- Getting ready for a nap before the Cath lab on Monday.

Caelin went back to the cath lab at 2:00 PM on Monday, May 21^st for the ballooning of his Aorta. Mommy and Daddy gave Caelin “See you later” hugs and kisses and he was rolled back to the cath lab. As he was going back, he blankly stared at Mommy and Daddy with his pale face and this gave us both a concerned feeling.

Around 4:00 PM Dr. Stapleton, the cath lab cardiac doctor, came into Cael’s room (where Mommy and Daddy were waiting) to tell them the procedure was successful. He explained that he ballooned Cael’s Aorta and a 25mm pressure gradient went down to a 2 mm pressure gradient. Although it was not perfect, Dr. Stapleton was pleased with the results. We thanked him and he left. About 10-15 minutes later Dr. Wilmot came into the room to give us an update. Dr. Wilmot is the cardiac doctor who was on the floor all last week monitoring Cael’s heart. He stayed in the cath lab during the procedure and reiterated what Dr. Stapleton told us. He also told us that they had just extubated Cael from the ventilator and he seemed to be doing well. We thanked him, also, and he left. Right after this conversation the nurse received a call asking if there was a ventilator set up in Cael’s room because he had to be re-intubated as his body became unstable and his lungs were not breathing as well as they needed to. At the time, we attributed this to the anesthesia they used. So the respiratory therapist came in to set up the vent. As she was setting it up, Mommy was standing by the door looking out in anticipation for her baby to come. The next thing she noticed was Dr. Pettigrew (the intensivist) and Jennifer (the respiratory therapist who went to Walled Lake Western) briskly walking with concerned expressions. They ignored Mommy as they past. They continued to pass room 16, and 17, and 18, and 19… at this point Mommy realized there was an emergency and it was NOT in a patient’s room. She knew something was wrong with her baby. She asked the nurse why they were not back yet but she didn’t know. She started panicking and Daddy made her sit down while he asked the nurse to call. She did and informed him there had been an emergency. Mommy could not stand sitting while Daddy walked out of the room to find the nurse, so she followed after him. As soon as she saw the nurse’s eyes, she knew her fear was confirmed. Mommy and Daddy held each other while waiting for news from the doctors. After what seemed like hours but was only minutes, Dr. Pettigrew came to update us. Caelin’s heart had failed and they were performing CPR. They were waiting for the surgical team to arrive to put him on ECMO if his body continued to make no progress with CPR. ECMO is a machine that pumps blood and air through the body, providing all of the respiratory and cardiac function- it is a form of life support. The surgical team was initially there for the cath procedure but they had been given clearance to leave because Cael made it through what is historically and statistically the difficult part of the procedure. So they all had to come back, scrub, and prep once they were notified. Just after 5:00 PM Dr. Wilmot, Dr. Pettigrew, and Dr. Stapleton all came out to speak with Mommy and Daddy. They explained what happened, why it was unexpected, and what was being done to save Cael- the surgical team was putting him on ECMO. Without ECMO, our son would have died in the cath lab as CPR failed to resuscitate him. They did not know what caused him to crash at this point, and unfortunately they will never know. Their best theory is his body and heart just had nothing left and his heart could no longer squeeze. After they left, we started moving all of Cael’s belongings from room 515 to 509, a bigger room that enables the placement of ECMO and an EEG monitor. At this point, Mommy and Daddy are hysterical. Staff from all over came to help us transfer everything and offer support. Caelin has many people here at All Children’s who love him and who were devastated with this news especially because less than a week earlier he was supposed to be on his way to discharge. Daddy called a friend from work to ask for help with letting the dogs out. She agreed without hesitation and immediately headed to the hospital to grab the house key and gate remote- thank you Ms. Pepper!

Of course while Daddy was out giving her the key, Cael arrived in the room attached to the ECMO machine surrounded by the surgical staff and four doctors. He was pale, cold, stiff, and motionless…. Words cannot describe the anguish Mommy and Daddy felt while setting our eyes upon our son for the first time after his heart failed. We let the doctors and staff do mostly everything they needed to do to get Cael settled- hooking up to monitors, hanging his medications, placing the EEG wires and monitor, positioning the ventilator, etc. Then Mommy and Daddy gave Caelin kisses and talked to him. We knew once he heard our voices, he would want to push to continue this fight. Initially his EEG showed very little brain activity but two brain ultrasounds were clear of structural damage and clear of bleeding. Because he received CPR for almost an hour, the doctors fear he endured some brain damage. They are unsure of the extent of damage but believe at least some is likely.

Daddy with Cael attached to all the machines.

The cannulas coming out of the right side of his neck are attached to the ECMO machine- those are circulating the blood through his body & keeping him alive. EEG wires on the brain. Ventilator in mouth coming out the left side.

From left to right: ECMO, EEG computer, medications and monitors.

Being his first night on ECMO and having just experienced cardiac arrest, he had a surprisingly stable night. Although it was better than the doctors predicted, it was still distressing and emotional for Mommy and Daddy; however, we woke up to Caelin moving. He was not moving a lot but enough to give us hope. Daddy had to run home to let out the dogs. While Daddy was out, Mommy stayed right by Cael’s bed talking and singing to him. After only a little while of hearing Mommy’s voice, Caelin began sucking on his ventilator tube. He did this after his Norwood procedure and after his shunt clotted- in Mommy’s eyes, this is the way Cael communicates to Mommy… to reassure her that he is doing okay, is comfortable, and is working toward recovery. Of course Mommy started crying tears of hope and joy and immediately sent this text message to Daddy, “He’s sucking on his tubie!” Daddy replied, “Awesome! That’s our little man. Always finding comfort in the most pressing of times. Letting us know he will be okay. And he isn’t going anywhere!” Before Mommy could even suggest it, Daddy made it clear that he felt Cael was communicating to us- we were experiencing the same thoughts and emotions.

Not much changed on Tuesday. Cael remained on 100% support on a flow of 200 milliliters per minute because the echocardiogram revealed his heart was not squeezing nearly enough. They kept his body temperature cold (33-35 degrees Celcius) put him on more medications to keep him comfortable, attached an artificial kidney to the machine to pull out excess fluid from Cael’s body (as he was experiencing a great amount of edema and could not be repositioned because of the cannulas in his neck), and extracted some blood volume from his body because his heart had too much in it. The plans were to leave his body alone, keep it comfortable, and prevent it from working more than it needed to help it recover from shock. The best thing about Tuesday is Sheri, Keetha, and Cassie arrived. It was so inexpressibly wonderful to have their physical presence amongst us during this pressing time. Also, I decided to check Facebook before I went to bed and I became emotional and overwhelmed with the posts and status updates asking for prayers and sending prayers to our Caelin. I could have never imagined the number of gratuitous updates, posts, tags and responses that I saw that were passing on our son's story… everywhere I looked was a message about Cael! Whether we are close, acquainted, or complete strangers, people were praying. And we thank you, from the bottom of our hearts. The appreciation Sean and I feel for everyone's positive energy and prayers going to our son is infinite and indescribable. Caelin is THE most blessed baby on Earth to have so many who love him and follow his journey. All three of us are so blessed.

Tuesday night was a little easier on Mommy and Daddy but we still slept very lighly. When we awoke, Caelin was moving even more. The night nurse actually had to strap down his arms over night because he was moving them too much and putting them close to his face. The left side of his head had his ventilator tube coming out of his mouth while the right side of his body had the cannulas sutured into his neck. If his fingers got hooked around one of these tubes, the outcome could have been detrimental. When Mommy said, “Good morning Caelin,” Cael opened his eyes. It was remarkable! Mommy’s heart fluttered as tears began streaming down her cheeks. Daddy came out and got a similar response out of Cael, too. Here, we hoped and prayed he would continue to show great signs like these. Since Monday evening, his EEG had started showing a little more activity, too! The activity is still somewhat depressed, but it has improved and still has the ability to continue to improve… prayers, strength, and hope!

With all of these positive signs, the nurses and doctors were pleased, impressed, and hopeful. They discussed weaning him off ECMO to see how he does, but first they wanted a repeat echocardiogram of his heart to see if the function improved. Around 1:00 PM they did the echo and it showed Cael’s heart had stronger function. With this, they decided to begin weaning the machine. In preparation, they gave him 60mL of blood for volume and a paralytic because he was moving LOTS and breathing on his own over the ventilator settings! …which were good things, but they did not want him to expunge too much of his energy with unnecessary movement… he often likes to overdo things to impress the nurses and doctors, after causing chaos and anxiety, of course. So the ventilator settings were increased to compensate for the loss of support of ECMO and prevent stress on Cael’s lungs. Then at 2:18 PM the ECMO cannulas were clamped off, disallowing blood flow to or from the machine. This gives the doctors a good indication of how Cael’s body would do on its own without any support. Every ten minutes for an hour they ran a blood gas to check all of Caelin’s numbers… there were no significant changes from one gas to another, which was excellent! With this, they contacted Dr. Jacobs, the surgeon. He came in, observed Cael, and discussed risks and benefits. Ultimately, they decided Cael was stable and the best thing for him would be to take him off ECMO! Mommy and Daddy were thrilled yet apprehensive at the same time. The nervousness and apprehension is attributed to Caelin’s Aorta. Although the ballooning seemed to help initially, the tissue recoiled and the pressure gradient was back to 25 millimeters. We are scared to death of history repeating itself. We strongly expressed our concerns, asked questions, and demanded answers from the doctors before going forward with taking him off ECMO. The doctors are limited to what they can tell us about the next step for Cael’s heart. It will need an intervention soon but they are not sure what is going to be best for him. They could do a temporary stent that is surgically removed during the Glen, a permanent stent that could be stretched in the cath lab every so often as he grows, or open-heart surgery to have the Ductal tissue removed. Each doctor has their own preference, experience and background knowledge which is causing disagreement between them on what is best for Cael. As time passes and Cael’s progress is monitored, we have a feeling Cael’s heart that will be the deciding factor. We just do not want them to wait too long and for him to end up in another situation like Monday. We also do not want them to plan an intervention too soon because his body is recovering from the procedure in the cath lab, plus the stress of cardiac arrest and undergoing CPR for 50 minutes.

Where is baby Cael? Under the covers to get his body all nice and warm after being taken off ECMO!

Off ECMO. On EEG & ventilator. 

Our little fighter. God bless him.

As we find out more information, we will update everyone. Hopefully a decision will be made about what route they prefer to take with Cael within the next couple of days. We are unbelievably thankful for Dr. Stapleton, Dr. Pettigrew, and all their team who worked together to keep Cael’s blood flowing through his body…without them, he would not be alive. We are extremely thankful for Dr. Jacobs and his surgical team who responded as fast as they could to get our son hooked up to ECMO... without them, our son would not be alive. We are incredibly thankful to the nurses, profusion specialists, and staff who monitored and tended to Cael while on ECMO to help find the perfect balance for his body to recover… without their attention to detail and dedication, our son may not be alive. We are exceptionally thankful for Dr. Bartlett and his staff at the University of Michigan for creating ECMO… without them, our son would not be alive. And we are especially thankful to you, Cael’s family, friends, and fans, for your prayers, support, and positivity… without you, our son would not be alive. Our son is the strongest person I have ever known- he is incredibly resilient, determined, brave, and inspiring, but he needed the support of everyone mentioned above in order to pull through this last event. So thank you everyone for your hard work, dedication, time, prayers and love for our son, the powerful warrior- Caelin Steven Clingan. We are eternally grateful.

Result of Discussion about Aorta

If you have not yet read the previous post titled, "Narrowing Aorta and Feeding," read that one first!!! 

Happy Boy!

Here's my GJ Tube!

Checking things out in the room.

Dr. Wilmot just came in and relayed the results of the conversations he had with Dr. Quintissenza, Dr. Stapleton, and the rest of the team. Upon reviewing all of Caelin's numbers and echocardiograms over time, they are confident their assumption of Cael's narrowing Aorta is correct; therefore, he will be going to the cath lab on Monday. They believe he will be fine over the weekend but do not want to wait any later than Monday. In the cath lab Dr. Stapleton and Dr. Wilmot will take pictures of his aorta and decide whether they need to balloon the aorta or place a stent. They do feel like an intervention will be necessary. If Caelin were older and weighed more then he would be closer to the Glen and the doctors would just wait until the Glen to address the problem. But since he is months away from the Glen, it could be too detrimental to wait that long. The doctors and surgeons also do not want Caelin to have open-heart surgery just for his aorta, so they believe the cath lab is the best solution- hopefully it is. I guess we will see on Monday...

The one positive thing about Caelin's over-circulation is he is getting ample oxygenated blood flow to his brain. Dr. Wilmot said this could explain his incredible alertness. So we are making lots of eye contact, talking to him a lot, reading books, singing, and giving him math problems. We are convinced he will be speaking in full sentences and doing calculus by Monday. 

...If you feel like you are missing some information, read the previous post... this is the follow-up! 

Narrowing Aorta and Feeding

Our family on Mother's Day. Thanks, Devra, for taking our pic! ;)

Caelin socking Daddy in the face!

Such a proud Mommy!

Two months old! Look at how I have grown!

Mommy & Cael

Daddy & Cael

It is so great to see his whole face! What a doll.

We apologize for taking a week to update the blog. Each time we would try throughout the week, the internet would not work at the hospital. We have been having a lot of issues with the internet connection in Caelin's room. Wednesday, Mommy tried for an hour to connect and could not get on. So over the past week a lot has happened.

First, let us say how wonderful it is to be able to see Caelin's whole face! This is the first time he has not had ANYTHING on his face since the day he was born. He is such a handsome baby boy!

Over the weekend Caelin was pretty agitated and irritable yet tired. They restarted his feeds through the J tube (going to the intestines) at 10 mL/hr. They ran at this rate for four hours and then he was bumped to 20 mL/hr. Between the time feeds were restarted on Saturday and Sunday at 6 PM he had 7 emesis of bile. Because of this combined with the discomfort of the tube being placed into his stomach from the outside, Caelin refused his binky and was a very cranky kid. So Sunday at 6 PM they decided to try to feed him through the G portion of the tube (stomach). From then until 10:00 AM Monday morning, Caelin had only 3 emesis. This was an improvement and we were proud of him, but he was still doing it a little too much and that made us nervous. He was also having difficulty pooping. It is common for anesthesia to have this effect. So they tried a suppository up his rear-end but he refused to let it go in and stay in! He turned purple trying to push that thing out as the nurse held it in. This gave Mommy and Daddy a good chuckle. Since the suppository failed, they ordered him a liquid to go through his tube. This ended up helping to get things moving! Sunday was also my first Mother’s Day. It was a beautiful day and I enjoyed every minute spent with my two men. The night technicians made a card with a lovely quote and with Caelin’s footprint (two of the same foot because he had an IV in his left).  Daddy and Caelin worked together to hand make me a special and unique picture frame! It is perfect!

Since the team of doctors change on mondays, the new doctor wanted Cael to go slower on his feeds. His feeds were bumped from 20 to 12 mL/hr. They remained here until Tuesday morning when they were increased to 15 mL/hr. Tuesday morning Mommy asked the doctors what they were doing here that we could not do at home and the intensivist’s response was, “IV Fluids.” And Mommy said, “Really? Because he’s not on any…” So apparently they had the intention of putting him on fluids to prevent dehydration since his body was getting significantly less volume of feeds. But no one wrote for an order for him to get them. The night nurse even asked the night intensivist if he thought she should put him on some and he said no. So at this point, their only counterargument for him staying here is that he needs IV fluids and they did not put him on any. Talk about another frustrating situation.

Through Monday and Tuesday his temperament changed. The tube site still seemed to bother him but he started becoming more lethargic. He was sleeping a lot more and seemed less alert when he was awake. Diaper changes didn’t seem to bother him, whereas he normally screams and holds his breath until it is over. Also, he started looking a bit paler. We attributed this to him losing 23mLs of blood over the last week to labs being drawn. Mommy and Daddy just kept a close eye on him and if things didn’t get better on Wednesday, Mommy planned to express her concerns. On Tuesday a doctor from hematology came to Cael’s room to talk to Mommy. She informed her that the results of most of Caelin’s blood work came back normal with the exception of one test. This test measured the level of his Protein C and it was abnormally low. She said the numbers could be skewed because of the Lovenox and aspirin so they would retest. If after retesting him they are still low, he will be classified as having a Protein C deficiency. This means his blood is more prone to clotting. However, even after this second test, the numbers still could be incorrect because he is still on the medications- so they won’t really know if they are accurate until over the course of the first year of his life. This level will be tested immediately before his Glen and after, then a couple months later.

Tuesday was a milestone for Mr. Caelin- he turned two months old! In our one month post we said we really hoped he was not here for his two month birthday to wear his “2 Month” outfit… but he was. He of course looked adorable but he would have been more adorable at home. He weighed 4001 grams which officially changed his medication dosing weight. He is a growing boy, but still under weight.

Wednesday morning started off decent. Laurie, Caelin’s nurse practitioner, came into his room and said she had everything ordered for when we go home and she had started his discharge paperwork because she was feeling he would be able to go home within the next week. Mommy was ecstatic but when she looked at Cael and thought about how he normally acts, she knew he was not doing well… So when Laurie came back in Mommy told her that she felt like there was something wrong with Caelin. He had been over-circulating (oxygen saturation levels were in high 90s to 100 and they are supposed to be between 75 and 95), was tachypneic (had rapid breathing), was nasal flaring, pulling when he breathes, taking short inhales and holding his breath then grunting them out, had lower blood pressures, and he was dusky and pale and extremely lethargic.  Cael lacked so much energy, when you held up his arm, it just fell to the bed. He had no resistance to anything and when he would try to cry, he would simply succumb. Laurie heard Mom’s concerns, agreed with Mom after observing Cael for a few minutes, and recommended a chest X-ray and Echocardiogram.

The X-ray was fine but the Echo revealed Cael’s heart is not pumping as strong as it should and needs to. He has reversal of blood flow which essentially means the heart is not strong enough to pump the blood out, so it is flowing back in. He has a narrowing Aorta, which is a huge concern. If the Aorta is too narrow, blood will not be able to flow to the rest of the body, which is what had been happening over the past few days. This is why it became harder for him to breathe, why he turned pale, why he was increasingly lethargic and so on… his heart was not pumping blood. As mentioned in previous posts, Cael has a leaky Tricuspid valve- this was initially not a huge concern because the rest of his heart seemed to be working fine and they were confident the surgeon could address it when Cael gets his Glen (second stage of the Norwood Procedure). Now that his heart’s squeeze is weak and they realize his Aorta is too narrow for the size of his shunt, it is a bigger problem. The doctors said they were really surprised he had done as well as he had to this point. They also feel like it could be part of the reason Cael has not been tolerating high volume of feeds- his perfusion of blood to the gut is really poor. So up until this point, the shunt was the focus of concern with Cael’s heart and now that it’s working great, almost too good for Cael’s size, his aorta has become the major concern. To help his heart, they put him on IV Lasix (diuretic) to empty out extra fluid and gave him a blood transfusion. Almost instantly he turned into our normal Cael. His color started coming back, his breathing slowed down and looked easier, his heart rate decreased to the 140s from the 160s and 170s and his blood pressures were higher.

Over night he had a decent night. Thursday morning, the doctors were pleased with his progress and restarted his feeds. They ordered a follow up echo for today (Friday). So Thursday was a pretty good day. Caelin was back to screaming during diaper changes, holding his breath, making his heart rate drop, and setting off the alarms on his monitors. Oh how we missed his obnoxious behavior!

Thursday night he slept phenomenal! He woke up only for diaper changes and to be re-swaddled. The doctors came in during rounds and assessed Cael. They all agreed he looked much better than he did earlier in the week; however, Mom was still concerned because into the morning Cael’s saturation was back in the high 90s to 100, his blood pressures were lower, and he was taking more frequent breaths with some grunting. They said we would talk more after he got his echocardiogram. So they increased his feeds, ordered a Vitamin K shot for a retest of his Protein C blood draw, changed his Poly-Vi-Sol dose to once daily and moved on to the next patient. About a half hour later the ultrasound technician showed up to do the echo. She left and Cael took a nap. Within the next hour Dr. Nguyen, a cardiologist, came in to do another echo himself. He wanted to take a closer look at Cael’s aorta. While he was performing the echo, Dr. Wilmot, the cardiologist on staff this week, came in to discuss the images with Dr. Nguyen. Upon discussion and review, they concluded the narrowing had become more significant since Wednesday and has become more of a concern. Also, the squeeze of his heart is still not where it needs to be. Dr. Wilmot, who is a brilliant and compassionate cardiologist, carefully explained the next steps. First, he wanted blood pressures of all extremities. If the uppers are significantly higher than the lowers, it will support their theory of the narrowing being significant. We took them and his right leg was 80/50 with a means of 57. His left leg was 87/49 with a means of 57. His right arm was 116/60 with a means of 75. His left arm was 103/50 with a means of 62. So this did confirm their suspicion. Second, even though Cael has tolerated it, he does not want Cael's feeds to go up and stress out the heart, so he is remaining at 14 mL/hr. Next, he would talk to Dr. Stapleton in the cath lab about possibly placing a stent or balloon in his aorta until Caelin is older and large enough for the Glen. He also would speak with Dr. Quintessenza, the head surgeon, about Cael’s prognosis and ask for his opinion on if a stent is the right answer or if he would need surgery before his Glen. After speaking to both Dr. Q and Dr. Stapleton and other necessary members of the team, Dr. Wilmot would come back to talk to us to give us a tentative plan.

So needless to say, just Wednesday morning the team planned on having Cael home within a week… and now it may be another month or more before they are able to even mention that word again. We wish so badly that our son would just heal and come home but apparently that’s just not how it’s supposed to be. Never did we think we would have to watch our son go through so many struggles in his life…. And he is only nine weeks old. He has a milk protein allergy, was Jaundice the first three weeks of life, has had dozens of IVs, blood draws, blood transfusions, a chest tube, pacing wires, a nasal feeding tube, been intubated, went to the cath lab, had two upper GI tracks, a Bronchoscopy, a Gastrojejunostomy tube placed, all in addition to his initial open-heart surgery which required him to be on bypass and then an emergency bed-side reopening to remove the clot in his shunt. Our poor baby boy is going to have to continue to fight hard his whole life if this is any indication of how things will persist. We just hope he maintains the strength, resilience, and determination that he has show, for it is what a powerful Warrior needs, along with love, hope, and prayers, in order to be victorious.

We will post an update of what Dr. Wilmot says is going to be the next necessary step.

Goodbye NG, Hello GJ!

First photo out of surgery. 

There is the GJ tube.

Our poor little guy. This will leave another scar on his belly. :/

Caelin's GJ Procedure went well. It was scheduled for 7:30 AM but did not take place until 11:50 AM because the hospital did not have the CORPAK tubing to complete the procedure. Caelin was takem to the 2nd floor at 6:55 AM for the procedure and at 7:40 AM they informed Mommy that they did not have the tubing but were trying to locate some. They said his procedure may need to be delayed until Monday but Mom was not going to allow it. In preparation for this procedure Caelin had been NPO since midnight, had to get a new IV for the fluids he needs to keep him hydrated, and did not get his extremely important anticoagulant, Lovenox. We did what we needed to do, so Mom told them that they needed to do what they should have already done- get everything they need for the procedure. (If there was one thing I could recommend to improve about All Children's Hospital, it would be their communication. There have been more than several instances where the communication broke down and poor decisions were made, i.e. Upper GI track with tube ND, wrong time schedule for Bronchoscopy given to anesthesiologist, times of medications, written orders, etc. Regardless of the frustrations we have experienced with their poor communication skills, we are eternally inexpressibly grateful for their knowledge, advocacy, and dedication to Cael.)


At 9:45 they still had not located one but were waiting to hear back from another hospital. So during rounds Mom explicitly said a decision needed to be made. She made it clear that if they could not do the GJ tube then she wanted him to get a G tube because he was not going to wait until Monday for the hospital's mistake. Since the doctors preferred for  Cael to get a GJ tube because of risk of aspiration with his vomiting, the doctors took it upon themselves to contact GI to make the GJ tube happen... and it worked. Thirty minutes later a lady from GI came to tell us that he was scheduled for 11:30 AM. ... So everyone is satisfied. Although his GJ site is painful and agitating now, hopefully Cael is happy having that darn tube out of his nose!


Cael did excellent during the procedure and had no complications, as I was told. Thankfully he did not have to be intubated and has been breathing well on room air. Also, he has had no desaturations. So far he has had two doses of Morphine and one dose of Tylenol. I suspect he will get at least one more dose of each throughout the night to keep him comfortable because he has the shunt. As long as the sight looks good tomorrow, they will start feeds at a slow rate. Over the next couple days they will opefully be able to get Caelin back to full feeds.

GJ Tube!

Tummy time!

Caelin in his swing!

He looks like a little old man from behind!

Cael doing "tummy time."

The magnificent weekend was followed by an overwhelming Monday. Mondays are usually busy because all the doctors and specialists return from the weekend. Caelin doesn’t normally have a problem with this but he seemed to this past Monday. On top of all the usual Monday visits, he had to get a new IV, and blood drawn for labs. Anymore he gets infuriated during labs and when getting a new IV so needless to say, he got so upset during these that he threw up. Overall, he vomited 6 times on Monday. Fifteen minutes after his last emesis around 6 PM, he began desatting. This means his oxygen saturation dropped from the 70s and 80s to the 40s and 50s. This is shockingly low. They did a chest X-ray and an echo to find what caused it but both were normal. The only conclusion is that he had an over-stimulating day and/or may have aspirated a little during his last emesis. Regardless, this reminded the doctors that he has very little reserves and needs to be left alone every once in a while.

Because of him desatting on Monday, they made him NPO (stopped feeds) until Tuesday morning and later that afternoon gave him 40mL of blood. Combined, these actions seemed to help Caelin recuperate and now he is doing better.

Wednesday Caelin had “tummy time” for the first time. His chest has finally healed to the point where it is okay for him to experience some time on his tummy as long as he is supported by the mini Boppy. He seems to love this! We think this position helps take some pressure off his belly and helps to relax him (he has been pretty constipated and gassy from the Elecare formula).

Tomorrow morning Cael is going to get a G-J tube put in his stomach. This requires him to go to the Operating Room with cardiac anesthesia. It is a relatively quick and straightforward procedure but poses some risk of infection and of course is always risky for Cael because of his heart condition. While he is sedated they are going to draw blood from him for his hematology labs. They will be taking 12 mL from his body for these labs so we are expecting he will need another blood transfusion after tomorrow. He will go NPO (off feeds) at midnight and will not resume feeds until Saturday morning. They have to allow time for the procedure to heal before they start feeding the stomach again. We are assuming that this will make for an agitated, hungry, and in-pain Caelin. Luckily, he should be able to get both Tylenol and Morphine to help ease the pain. 

7 Weeks Sure Flew By!

Sleeping in Mommy's arms.

Sleeping on Daddy's chest.

Happy in his bouncer.

Car seat challenge!

Like father like son.

Well Caelin is now going on 8 weeks old and 8 weeks in the hospital. We were really hoping he would be discharged by Mother’s Day but it is not looking like that will be the case. He is still struggling with feeding. Although he has reached his goal of 26 calorie milk at 20 mL/ hr, they would like for him to get down to 60 mL/ 30 minutes so he can eat like a regular baby. This is called bolus feeds. So he would consume 60 mL in 30 minutes and then have a 2 – 2 ½ hour break. On Friday he went to 60 mL in 2.5 hours (24 mL/hr) and he did well for most of the afternoon and evening, having only one emesis. But overnight and into Saturday morning he had two more emesis. Because of this, the head intensivist decided to put him back to his continuous feeds of 20 mL/hr. Since Mommy is not able to produce enough milk for him to consume, some of his feedings are of just Elecare. So we think part of the problem could be that his stomach may not be tolerating the constant switch between Elecare and breast milk. As a result, we are thinking about putting him on 100% Elecare. Despite the breast milk being good for his immune system and digestive system, the head intensivist believes choosing one and sticking with it is the best solution for his sensitive stomach. And since Mommy cannot produce enough milk, the only option is Elecare. But we did not have much of an opportunity to speak with during rounds, we requested for her to come back to discuss the next steps. Thursday we spoke with the nurse practitioner. She told us that if Cael is not ready for the bolus feeds then a G-tube may be the temporary solution to get us home and that he can go home on continuous feeds, as long as we work at a slow pace to help him toward bolus feeds. We do not want Cael to have to stay in the hospital for feeds if it is something we can work on at home; so this is what we want to talk to the intensivist about.

On Thursday Caelin did the car seat challenge! This is where he has to sit in his car seat for an hour and a half without desaturing or dropping his heart rate. The nurse suggested us to do it so it is one thing to check off the list of requirements before discharge and because sometimes it takes more than once to pass. This passing the car seat challenge is a requirement in order to go home. Luckily he passed it on the first try! Big Boy :) 

Besides struggling with feeding, Caelin is doing great! He does get bloodwork done twice a week, including a Heparin level check. The Heparin is injected to his body through his Lovenox shot and its purpose is to prevent blood clots since he clotted his shunt once before. The level of Heparin was tested on Thursday and it was lower than what they want it, so they increased his dose. With the increase, they are required to recheck it and that was done this morning. His level was still too low so they increased it again. His Heparin levels will be tested again next week to make sure it is where the doctors want it. We were recently informed that the chromosome test done when he was a newborn came back normal, which implies that Cael’s condition is not genetic. The geneticist still recommends for us to get echocardiograms to check out the function of the left side of our hearts. The doctor also said she ordered for blood to be drawn for a test to check the function of his Thyroid. He had this test done when he was first born and it was slightly abnormal. So she just wants to be sure it is normal before he does go home. Also, Caelin is starting to gain some weight and fill out! During his last weight he was 3.679 kg- that’s almost 8 pounds 2 ounces! We are glad he was able to wear clothes the past couple weeks because he is now outgrowing his “newborn” size outfits. 

Feeding Tube is NG!

Just like Daddy.

Cael's first full outfit!

High fives!

Kickin' back!

Playing with his toys and picture mobile.

Caelin has been doing well over the past few days. He tolerated the switch back to breast milk. With him tolerating full volume and with Mommy having to switch her diet, she has not been able to produce as much milk as Cael needs so the breast milk is being supplemented with Elecare every so often. To help with production and to help get Cael interested in oral feeding, the head Intensivist gave Mommy permission to put Cael to breast after she pumps! : ) Even if Mommy is able to produce enough milk, the doctors say he will still go home on Elecare to increase his caloric intake. Although Mommy and Daddy are happy there is a formula that Cael can tolerate, they are not very excited about bringing home this hypoallergenic formula- it is $204 for a 6 pack of 14 ounce cans of powder. At 3 ounces of Elecare a feeding, this pack would last for only approximately 24 days. YIKES!!

Since he tolerated full feeds on breast milk, they pulled the tube back to NG from ND. They started him on 10 mL/hr but within the first 15 minutes he seemed uncomfortable and started showing signs of possible reflux. Because of this, his nurse went to talk to the doctors. The doctors said they were going to push the tube back to ND. Mommy was shocked at how quickly the doctors were willing to give up on Cael and did not agree with their suggestion. He is almost 7 weeks old and has never had anything in his stomach so of course his body has to adjust. Luckily one of our favorite nurses was in Cael’s room checking in on us and she stood up for Cael. She was not afraid to voice her opinion and say that 15 minutes is not long enough for Cael to prove himself. Surprisingly the doctors respected her voice and decided to just lower the rate. We are so thankful for her- especially because after they left she told Mommy that if they pushed it back, it would have been a while before they tried again. So he was on 5 mL/hr for 22 hours. At 11:00 AM this morning he went up to 10 mL/hr. At 5:00 PM he went to 15mL/hr and at 11:00 PM he will be back to 20 mL/hr, which is his goal! He has done well thus far so hopefully he continues. The doctors have not said exactly what they plan to do next other than just monitor his progress and tolerance. We are okay with not having a plan drawn out because we are happy with where he finally is and Cael does not seem to like to stick to plans- clearly he has his own agenda and he has gotten a rep around the hospital for it! lol

Cael wore his first full outfit on Sunday! A onesie, pants, and socks. He looked adorable! Mommy and Daddy have so much fun dressing him up and we know it is going to be even more fun playing dress up when he is home! We also got a swing in his room- he has tried it out but does not love it the way he loves his bouncy chair. We will keep trying and maybe he will start to like it!

Thank you to all who have sent Caelin your positive energy to help him get to where he is today. We appreciate you and love you!