Already Over 6 Weeks Old!

Good-bye Giraffe bed

Hello Crib!

Working on a smile!

We are going to miss Uncle Tristan and Grandma!

These past few days have been great! Caelin got up to full feeds of 20 mL/hr on Thursday and he has tolerated them well. Friday he was put on 20 mL/hr with 26 calorie Elecare which was his goal. Since he tolerated the volume and concentration he was switched back to breast milk this afternoon. Today marks one week that Mommy has eliminated all soy and milk products from her diet; it has been tough to do but it’s well worth it if it allows Cael to consume and break it down. As long as he continues to tolerate the feeds the next couple of days, the doctors plan to pull it back to NG! We are so proud of Cael for finally getting to where the doctors wanted him to get. It took three weeks but he is heading in the right direction! He still has not stopped retching and vomiting, but he is doing it a lot less and they have no trend. They are often unpredictable and without obvious cause. The cardiologist says that unfortunately he may just be one of those babies who does it every so often and should grow out of it.

Caelin’s breathing has also gotten better. He really only gets noisy when he is really mad or right after he retches and vomits. We think his voice is finally fully restored, too! He has been pretty vocal and when he is mad, he can get really loud! lol

Thursday Caelin got his first hearing test. Two ladies from audiology came in while he was sleeping and stuck wires behind his ears that measure nerve responses to sounds played in his ear. Both ears passed! They gave us a little magnet to track his hearing progress throughout his first year of life. He has already mastered all four 0-3 month milestones AND two of the 3-6 month milestones. The first of the 3-6 months is “Looks for sounds with eyes” and the second, “Responds to your voice even when you cannot be seen.” We like to attribute this to us reading, talking, and singing to him so often while he was in utero and constantly since he has been born.

Also on Thursday Caelin graduated from a Giraffe bed to a crib! The nurse was just going to give him a new, clean Giraffe bed but Mommy asked for a crib since he is growing and she said it was no problem. So he is loving his new crib! Half of it has his Z-Flo mattress where he sleeps and the other half has his Boppy pillow where he sits up and plays. We are able to hang his music/projector toy and put some of his stuffed animals in there with him. Mommy also created a little mobile of pictures above his head. He has been working on smiling, sucking his thumb, and reaching for things in front of his face. Just today when Mommy returned from dropping Grandma and Uncle Tristan off at the airport, Mommy walked in and started talking to Cael. When he looked over at her and finally made eye contact, his eyebrows raised, his eyes opened wide, and he was trying to push out a smile. This melted Mommy’s heart!

One more cute detail- he is able to wear clothes now! Mommy asked on Wednesday night if she could bring in some clothes for Cael (onesies, t-shirts, and loose bottoms) and they said, “Of course!” This made us so excited! He is restricted a little bit because of his IV, pulse oximeter, blood pressure cuff, and leads but we are just happy he can wear something! So Friday he wore his first real onesie (since his one month shirt had to be cut down the back and just draped over him)! He honestly does not seem to mind wearing clothes and he looks so gosh darn cute in them!

We continue to be so proud of our little guy and how far he has come. We are incredibly happy that he is finally starting to triumph with his feeding; he still has quite a bit more to accomplish with feeding before he can come home but he can finally tolerate the volume which was the first step! Mommy’s sense of hope and optimism has been reinforced with a fortune card from Zoltar at The Pier in St. Petersburg. On Friday Mommy, Grandma, and Uncle Tristan went down to The Pier and could not resist the Zoltar fortune-telling machine as seen in Big. Mommy’s fortune read, “The crystal gazer has wonderful things in store for you. A dear one will return from a long trip and your whole life will be different. You have a patient disposition and your patience is about to be rewarded. Despair not I say for your days of despair will soon be over. Your calm spirit, and your good sense will see you through all emergencies. You have many fiends, particularly in the armed forces. They are loyal to you, and are glad of an opportunity to be of ‘service’ to you.” All I can say is I hope there is truth to this fortune and thank you to all of you who read his blog and support him.

Almost to His Feeding Goal

The past couple days have been pretty normal and steady. His blood pressure was a little low this afternoon but the nurse said she was not worried because he had just been unwrapped for a little while and got a bath. An hour later we retook his blood pressure and it was back to normal. 


Caelin is enjoying Grandma and Uncle Tristan's visit! Uncle Tristan gained the confidence to hold Cael and Cael loved it! He did not fuss or squirm in his arms- he got comfortable and snuggled right up against him! 


He has been doing well on the Elecare formula. He is currently on 18 mL/hr and has been tolerating it much better than the 18 mLs last week on breast milk. He has had only 2 instances of emesis and is retching a lot less. Tomorrow they plan to bump him up to 20 mL/hr which is his goal- please pray that he will be able to tolerate it. If he does, they will put him back on breast milk. If he tolerates the volume then they will most likely pull the tube NG to see how he does with the food going to his stomach instead of past it into the duodenum. 

Mommy & Daddy on Mommy's birthday.

He's pointing!

Pump, pump, pump it up!

Sleepy boy.

Uncle Tristan holding Cael for the first time!

Caelin has been a very happy boy when he is sleeping and awake- he is such a great baby! He is so entertaining, we could just watch him all day. This morning he really started discovering his right hand. He likes looking at it and putting it in his mouth- he is even trying to suck on his thumb/a couple fingers when he does not have his binky. Adorable!

Special Visits & Test Results

Friday through Monday morning has been busy- as usual. Friday morning Caelin had a bronchoscopy, another upper GI tract, and a new IV. The bronch came back normal- there is nothing wrong with his airway; however, he does have a mild case of Laryngomalacia that the doctors say he will grow out of. The upper GI tract revealed nothing unusual, so Cael has no anatomical abnormalities. We are thankful that both tests came back negative, but it still leaves us and the doctors with no answer as to why he is retching and vomiting so frequently. Because of his busy Friday, Caelin did not go back on feeds until 10:00 PM. He then came off them again at 1:00 AM because his oxygen saturation levels were low. In addition to taking him off feeds, they put him back on the nasal cannula with oxygen assistance. The doctor was not sure what caused it but we are thinking it was from the anesthesia and possible swelling from the bronchoscopy.

Saturday late morning he was doing much better and breathing on his own. During rounds Mommy and Daddy asked if they were going to restart feeds and if the milk protein intolerance test results had come back yet- they had just come in at 1:14 AM that morning. He tested positive for a milk protein allergy so he is now on a special formula called EleCare where the proteins are already broken down to where Cael’s body will be able to digest them. He started on 5 mL/hr, was bumped up to 10mL/hr Sunday, and this morning (Monday) to 12 mL/hr with increasing by 2 mL every 12 hours. Because Mommy and Daddy are strong advocates of breastfeeding, Mommy is cutting out all dairy AND soy from her diet. Because of this, within a few days Cael will be able to go back on breast milk. By the way, it is ridiculously hard to find snacks that do not contain milk or soy- so it looks like Mommy will not have cake for her birthday and may need to take a trip to an organic or Whole Foods store.

Caelin had a lot of visitors on Saturday! First, Danny and Rachel came to visit. Caelin is the first baby that Danny has ever held but he was a natural- Caelin was sleeping and content in his arms! Rachel thought he was going to cry but he liked her holding him, too! Then later on Grandma and Uncle Tristan arrived! Grandma was nervous holding Cael because of the wires, but it didn’t take long for her to channel her natural ability. Uncle Tristan is still a little bit nervous about Cael but he will hold him before he heads back to Michigan!

Sunday was a nice, easy day which Caelin really needed because of the previously busy days and because he did not sleep well due to being gassy and constipated. From 1:00 PM until 5:00 PM Cael got to sleep on Daddy’s chest! He was completely content and he did not make a peep.

Sunday night into Monday morning Cael slept better than he had been sleeping. Then at 8:00 AM he got his blood drawn for his labs and that started a ripple effect. After his blood was drawn he got all his medications. All the medications get put through the tube and Mommy and Daddy have been the ones dispensing them. Mommy started with the aspirin and this caused him to retch and vomit, which is strange because Mommy goes SOOO slow when putting his meds through the tube. He must have just been extra sensitive but he ended up doing fine with the Enalipril, Prevacid, Poly-Vi-Sol, Zantac, and the flush. Because he threw up Mommy grabbed a nurse to change his sheets and when she did she noticed his arm with the IV was red and swollen. She asked the nurse to look at it and with one glance the nurse knew the IV was no longer good. She grabbed Cael’s assigned nurse to come pull out the IV and to put in an order for the IV team to come give him a new one. His poor little arm is so red (almost purple in some spots), swollen, and sensitive to touch. Because of this, we gave him some Tylenol to help with the pain. While waiting for the IV team to arrive, Mommy noticed Cael’s right eye had yellow goop in it- it had been recurring for a few days now. A couple days ago a nurse suggested he may have a blocked tear duct and we should apply warm compresses to it. They did not seem to help so I asked the nurse and IV specialist what else I could do to help. The IV specialist suggested massaging the bridge of his nose. I did and almost instantly his entire eye flooded with the yellow goop! Mommy was shocked, as was the nurse, but Caelin’s facial expression showed relief which helped calm Mommy’s nerves and nausea. After this, the IV specialist gave Caelin his new IV but not before she stuck him three times because his veins were small and uncooperative. Our poor guy after this was exhausted, he could barely keep his eyes open. He did not even protest when Mommy swapped out his wet diaper. As the IV specialist was finishing, both Speech and Physcial Therapy showed up and I told them it was not a good time. The speech pathologist said she would come back in the afternoon. The physical therapist just looked over Cael’s IV to make sure it was properly dressed and checked out the rest of his limbs as Mommy was wrapping him. He is finally taking a well-needed nap.

The only thing Mommy wanted for her birthday was to be home with Caelin but his body is just not ready. So although it has been a crazy morning at the hospital, Mommy would have her time spent no other way than here with her baby boy. The day will be complete once Daddy, Grandma, and Uncle Tristan arrive to share and expand the happiness and love.

Five Weeks Old

Before Caelin was born we had expected him to be in the hospital for four to five weeks. Today he turned five weeks old so he is going on his sixth week in the hospital with no "Going home date" to speak of.

The main thing that is keeping Caelin here is his struggle with feeding. The doctors cannot understand why he is retching and vomiting with the ND tube at 16 mL/hr and higher. So he has remained on 16 mL/ hr for three days now. He is getting to the point where he no longer will take his medications by mouth or even practice oral feeding with breast milk. Thank goodness he still likes his binky because it helps soothe and comfort him. We still have not been informed of the results of the protein intolerance test but we are assuming if it came back positive then they would have switched the breast milk to formula. This afternoon he received an abdominal ultrasound to look for Pyloric Stenosis, a narrowing of the pylorus (the opening from the stomach to the small intestine). If he has Pyloric Stenosis, he will have to have surgery to correct it. We have not yet received any update on the results of the ultrasound.

Tomorrow (Friday) morning Caelin is going into the operating room at 7:30 AM to receive a bronchoscopy. This morning the head intensivist assessed Caelin and decided to schedule him for a bronch because of his stridor (squeaky breathing). He will have to receive anesthesia for this procedure and may have to be intubated because of resulting swelling. We are really hoping this is not the case because we do not want him to be intubated again; but if he has to, then he has to.

Yesterday the doctors took him off his Lasix (diuretic) to keep his body from dehydrating. The past few days his heart rate has been a bit elevated and they attribute it to his body needing more fluid. This would make sense because he has been vomiting all his saliva, sweating a lot- particularly , and having a lot of stools. Yesterday he had eleven stools total... so needless to say, he has developed a diaper rash. Because he was having such explosive poops we put him in size one diapers from newborn and it helped to loosen his cord! So at almost five weeks old, it finally fell out!

This journey that he is on has so many ups and downs. Watching our son have to go through an abundance of physical pain, tests, and procedures is the hardest thing we have ever experienced. Having such a lack of control makes it worse. We are thankful he won't remember anything he is going through in the first months of his life but right now he feels the pain- we can hear it in his cry and we can see it in his eyes. We would give anything to heal our son.

Please keep sending positive energy and prayers for our son to heal so he can come home.

LA Line & Pacing Wires Out!

Here is Caelin without his pacing wires and LA line and in his bouncy seat for the first time! This really puts into perspective how little he is! We feel like he has grown since he was born, but it was nice to be reminded that he is still a little guy. He does have quite the little personality! He is very social like Mommy and Daddy- he talks to almost every person who comes into the room and strikes up a conversation with him. But he also has a temper... if he is grouchy or does not want to be touched, he will give a warning growl and then flail his arms up. He is also getting good at blocking what he doesn't want bothered & knocking away things that he does not want coming close to him. He is too cute!

Monday was a pretty mild day. Overall Caelin was in a pretty good mood but had moments where he was agitated. His feeds got bumped to 16 mL/ hr and his blood gasses where discontinued. The doctors also decided that since his LA (Left Atrial) line would no longer draw blood for labs, that he could get it removed. They also said he can get his pacing wires out! So all day yesterday we were anxious for him to get both of those removed; however, an emergency came up that required the surgeon's attention so Cael did not get them removed until today. But they are now officially out! :D To compensate for the LA line's removal, Caelin had to get a new IV in his leg for medications. He got this yesterday afternoon and it was the worse IV experience he has had yet. The lady woke him out of a deep sleep, was not very gentle with him, and poked him three times to find a good enough vein. So needless to say, Cael was incredibly irritated and sore after this.

In addition to getting his LA line and pacing wires removed, Caelin got what we are hoping to be his last dose of methadone, and got bumped up to 18 mL/hr on his feeds. Because he got the wires removed he got an echocardiogram to check the function of his heart and ensure there is no fluid around his heart. The echo looked great- no fluid and good function! His heart rate has been higher than it was on Sunday and yesterday. For the past two days his heart rate was between 110 and 135 and today it has been between 135 and 170. After looking at his statistics and charts they concluded he was a bit dehydrated and that could explain the increased heart rate. So they gave him fluids in his IV to help.

He had one episode of emesis (vomiting) yesterday and three today, not to mention an abundance of retching. Because of this, Mommy asked the doctor to go back down to 16 mL/hr on his feeds. Although Mommy and Daddy want nothing more for Cael to reach his goal of 20 mL/hr to get one step closer to coming home, we want more for him to get there on his time. If he is pushed there could be bad repercussions and we do not want to take those risks if his body just needs a little while longer for his digestive system to become efficient. On the bright side, yesterday Caelin drank milk from a bottle nipple and swallowed it without gagging! :) He has become a master with the binky tasting and is now starting to get used to the milk coming directly out of the nipple. Speech is continuing to work with him on this and hopefully he will continue to master each step toward oral feeding! We are hoping he will get to try bolus feeds next week (feeding by mouth in between his continuous tube feeds).

One Month Old!

Today Caelin is one month old! A couple of the nurses have said that he actually looks older, and we would have to agree. His eyes are just always so wide and open when he is awake, he is so physically strong and mobile, and he is beginning to develop a little personality. He likes to make cat noises- he often growls, purrs, and grunts. lol He entertains us even when he is asleep. He has been doing well the past couple of days- the nurses keep commenting on how good he looks; however, yesterday (Saturday) afternoon Daddy noticed that Cael lost a lot of his color and was more pale. Having bathed Cael earlier, Mommy agreed with Daddy that he looked much more pale. At this time, his temperature was at 35.8 Celsius and his target temperature is between 36.5 and 38.0. So we bundled him up in two blankets and temporarily turned on his heating lamp while the nurse contacted the doctor.

The doctors and Cael's nurse were concerned with his loss of color and assumed it was related to him coming off the Milrinone and on too low of a dose of Enalapril. Although he lost color, his stats and pulses were still great but they put him back on the Milrinone as a precaution. But his color did not improve through the night and into the morning so they took him back off the Milrinone and increased the dose of Enalapril. Because he became so pale, he also got an echocardiogram so the Cardiologist could verify the function of his heart is just as good as it has been. After looking at the echo, the Cardiologist told us his shunt and the function of his heart looks good; however, the Triscuspid valve has some leakiness. This sounds awful but is apparently common in children with HLHS because the heart does not pump hard enough to push all the blood out, so some trickles backward- it can even happen sometimes in healthy hearts. But of course, they are continue to watch it to make sure it does not get worse because then it can become a problem.

Yesterday he was put on Decadrone, a steroid, to see if it helps with his squeaky breathing. The Decadrone will treat any left over swelling in his throat from being intubated. Dr. Pettigrew stopped in this afternoon to check on Cael and heard his squeakiness. Because it is still so strong, he is strongly suggesting Cael be looked at further with a bronchoscopy. He will not be here next week to give the order because the intensivists trade off weeks, but he will still make the suggestion. He said the procedure does have risks, but he thinks the potential benefits outweigh them.

The Vapotherm was put down to 1.0 liters of flow yesterday and was removed this morning! All day Caelin has been doing well without it, so fingers crossed that he will continue to be strong and independent! :) We are a little nervous with him being off it because the Vapotherm was helping his airway and the doctors are suspicious that his airway could have been damaged from the ventilator.

Thank you to Amy Gers and her wonderful family for the month milestone stickers! This was the first article of clothing (other than a hat and socks) that Caelin has ever worn! He is so handsome and we are so anxious to play dress up with him. All we have to say is when it's time for him to wear his "2 Month" outfit, he better be home! :D

Changing Medications

Caelin had an excellent night last night... and this morning his gas revealed that his blood count was where it should be so the good night was all Caelin, not because he was too exhausted from having no blood! lol

Today was Friday the 13th but it was a good day! Caelin continued with working on oral feeding. He took 2 mL of breast milk by mouth practicing "taste." This is where we squeeze in droplets of milk as he is sucking on his binky. Since he did so well yesterday and today, the speech pathologist decided to let him try sucking milk directly from a bottle nipple for the first time. He sucked out the milk, then gagged and spit up. She said this is normal and does not attribute it to acid reflux but more so to the fact that the milk came straight out into his mouth rather than gliding in slowly between his cheek and binky. Hopefully Cael will be able to try again tomorrow!

He was happy pretty much all day! A couple times when he woke up he would be fussy, but would calm quickly with a diaper change, binky, or just being talked to. He spent a lot of his time awake and alert! He loves to look around and interact with Mommy and Daddy.

The biggest news from today is they are starting to transition him to the medications he will be on when he comes home. So he only gets his lasix once daily instead of twice and it is now oral instead of through an IV. They have reduced his Milrinone from 0.375 to 0.25 and he will most likely come off it tomorrow. He is now off Heparin and on Lovenox. The Heparin was a continuous weight-based drip which required them to check his levels every six hours by drawing approximately 7-10 cc's of blood. So thank goodness, they no longer have to do this! They will have to check to make sure the Lovenox is therapeutic. Lovenox is an anticoagulant injection used in combination with aspirin to help prevent blood clots. He tolerated the transition from Fentanyl to Methadone at 0.3 so they reduced it to 0.2 today. His chest therapy was discontinued because his lungs look healed; they no longer show any signs of being collapsed or having any fluid in them. Also, his blood labs now need to be done only Mondays and Thursdays instead of Mondays, Wednesdays, and Fridays. The only thing he is still on is the Vapo Therm. They did not want to take him off of it yet because they made so many adjustments to his medications and they are going up on feeds. They are talking about transitioning him off of it tomorrow or Sunday.

He is now on 8 mL/hr of breast milk. The orders are for him to go up by 2 ml/hr every 12 hours. So at midnight he will be bumped up to 10 mL/hr. He had only one instance of emesis (vomiting) today, and it may have been because of the medication the nurse dispensed into the tube, not the feeds. Hopefully he continues to do well and handle the feeds as they increase because if not, the doctors are not sure what to do. But if he does handle them, then we get closer to him being discharged and coming home! :) He gets three different medications for acid reflux and digestion- Reglan, Zantac, and Prevacid. All of these medications he receives orally. The Zantac and Prevacid Mommy mixes with breast milk so Cael can swallow them without gagging (he does not like the taste). But the Reglan he does not seem to mind too much. So he has done an excellent job with swallowing these medications- hopefully they will help prevent vomiting as his feeds increase.

Working on Feeding

Caelin did not have a very great night Monday night. He was awake, agitated, and inconsolable for most of the night which is very different from the night before where he had cycles of sleeping and being happy, alert awake. He puked up mucous three times, yellow bile and mucous once, and had another breathing episode where his respiratory rate dropped and his oxygen saturation went down to the 50s. He was so irritable the nurse decided to give him a dose of Morphine. Although it made him sleepy, he was still fighting through it. For the rest of the morning Cael was in and out of sleep. He was consolable and went back to sleep when he awoke but he was in light sleeps. We attribute this to the fact that they went from 8 mL/hr to 16 mL/hr on his feeds and his body was just not happy with that decision. After he threw up (emesis) in front of one of the doctors, he finally realized that maybe Caelin is being affected by the higher dose of feeds. Caelin's breathing has gotten better since he has been on the Vapo Therm, so they have kept it all week but plan to take him off of it tomorrow because he is on the lowest setting. They said he can go on a different type of oxygen machine (high flow) if he needs the humidified air. His breathing is still noisy and they suspect laryngomalacia. but they do not plan on doing a bronchoscopy. So ultimately the doctors are not positive about what is going on with his breathing and have even less of an idea of what to interpret with his eating difficulty but they have started running some tests to rule out major concerns.

Because Caelin was throwing up they decided to reduce his feeds and start slowly again. They have not yet figured out why he is retching and experiencing emesis but they think that part of it is his body needs more time to allow good profusion to his GI track. The first test they did is called an Upper GI Track. This is to check the anatomy of his digestive system. During the test he retched and vomited but he should not have. This confused all the lab technicians and still has the doctors puzzled. Mom thinks it has to do with the tube hitting a reflex, but the doctors do not believe this is the case. The cardiac doctor says it is GI related while the GI doctor says it is cardiac related. So we are left with doctors having conflicting ideas and beliefs and no real answers. This is one of the most frustrating parts about this whole process- Mommy and Daddy have a complete lack of control. With our personalities it is difficult for us to lack control in any situation, but the lack of control with helping our son to recover is heart-wrenching and frustrating beyond belief. So poor Caelin has gone back and forth with being fed. As of now, the plan is to increase by 2 mL/hr daily. He is currently on 6 mL/hr and his goal is 20 mL/hr. If this is the plan they continue to implement, he will reach his target consumption on Thursday, April 19th. We were hoping to go home around that time, but it is seriously looking like that's not going to happen. At this point all we can do is hope and pray that he will be able to handle these baby steps and will be able to come home some time in May. .... On a more positive note, he is still allowed to work with the speech pathologist on oral feeding. Today he took 3 mLs in a row! He sucked and swallowed them down like a champion!!... Only 17 mL more to go in an hour! lol But the speech pathologist was very proud of him, as were Mommy and Daddy! :)

The second test they did was a protein intolerance test. They are checking this to see if his body is having difficulty digesting my breast milk. If he is intolerant, Mommy will have to stop eating dairy products if she continues to pump. Otherwise, they would switch him to a special formula in which the protein is already broken down.

Caelin's blood count was also really low on Tuesday night/Wednesday morning. His hematocrit was at 32.8 and his hemoglobin was at 11. 7. Ideally they want his hematocrit above 40 and his heoglobin above 15 so he received a blood transfusion yesterday. Because of these low numbers, they checked his stools for blood. In 2 of 3 stools there were microscopic traces of blood which could suggest some sort of bleeding in his body. The doctors say they are not concerned with the microscopic amount in the 2 of them because it is most likely just residual blood. If there were more, they would have more to be concerned about. He also had a head ultrasound which came back normal- THANK GOD! With the results of these tests, we are assuming his blood count was so low because his body has just not been able to replenish the amount of blood fast enough that is being drawn from him on a daily basis.

In other news, they still have not made a decision on which medicine they are going to switch him to from the Heparin. He is still on 21% oxygen and 2 liters/min of flow from the Vapo Therm but will be coming off it tomorrow. The doctors continued the wean of the Fentanyl and he came off it Wednesday night at 11:00 PM. To help him transition off the potent drug, they are using Methadone. Sean and I were apprehensive about this at first but after the doctors explained why it would be the best route for Cael, we agreed. He is receiving Reglan for acid reflux, although they are not sure if it is actually helping since his tube is ND and he is throwing up bile and mucous instead of breast milk. Although his blood culture and urine culture are still negative for growth, he continues to receive an antibiotic for the Staph infection, as well. The doctors came down in his Milrinone which decreased his blood pressure and strengthened the squeeze part of his heart. Because of them weaning him off Milrinone he is now on Enalapril.

I think this is the root of the updates- if there is anything I missed I will add it at a later time. It has been a very exhausting week for all of us- Caelin especially. Hopefully over the next two weeks Caelin will be able to come off more medications, get wires removed, and consistently feed... but we just have to take one moment at a time. Please continue to send positivity and prayers. Thank you!

Easter Weekend

So it was a very busy weekend, followed by a busy Monday. Caelin is currently doing alright but his forward progress has recently been accompanied with a few bumps and speed limit signs (apparently he is trying to go too fast for his little body).

Saturday Caelin’s noisy and raspy breathing continued which led to a visit from the ENT (Ear, Nose, and Throat Specialist). The ENT examined his vocal cords and declared they are both functioning, which fortunately typically rules out paralysis. On the other hand, this means they need to continue to monitor him to diagnose exactly what is causing it. The intensivist and cardiologist are suspicious of Laryngomalacia but really cannot diagnose it without a bronchoscopy; however, they do not want to do a bronchoscopy yet because it is another invasive procedure for which Caelin would have to receive anesthesia and be re-intubated. In addition to the noisy breathing, Caelin started throwing up frequently. He was receiving breast milk through his ND tube but it was not milk that was coming up; it was mucus, phlegm, and at times some yellow bile. This also puzzled the doctors and they are not quite sure what is the cause. On a more positive note, Caelin was able to take one full mL of breast milk with his pacifier. He sucked on the pacifier while Mommy inserted a syringe full of milk and slowly pushed the milk into his mouth. As he sucked, he swallowed and began sucking vigorously. This is a good sign for the future!

We hoped Sunday would be a day full of promise- if not positive progress, at least happiness. It started off with Caelin not getting much rest but he had a visit from the Easter Bunny and this made Mommy excited! He got two baskets (one from the hospital) and a musical bunny from Grandma, as you can see in the picture. But it quickly became a morning full of throwing up. He threw up 8 times from 7:00 AM until about 1:00 PM and each time there was a significant amount of mucus and phlegm. Although from a Cardiology standpoint Caelin was doing well, we were highly concerned with the recent developments regarding Caelin’s health and how it was affecting him and how it could affect his heart. So we waited until almost 1:15 PM for the doctors to come speak with us during rounds; however, there was an emergency in the PICU that required the doctors’ attention that kept delaying their rounding to each patient. So our nurse told us we should go get some lunch because it didn’t seem like the doctors would be coming any time soon. We did. We came back to the Charge Nurse outside of Cael’s room, our nurse in Cael’s room with the respiratory therapist, and Cael pale as a ghost, breathing at a low rate, and receiving oxygen. Daddy’s legs felt like Jell-o while Mommy’s heart began racing so much she felt nauseous. For over an hour his respiratory rate resided in the low teens, his oxygen saturation level would rise out of the 60s, and his skin was milky white. Our nurse tried contacting the doctors but they were tending to the emergency in PICU. Mommy was beginning to panic and lost her patience with the nurses and respiratory therapist- she wanted a doctor to help her baby and there was not one available. After sending several pages to the doctors, Cael’s nurse sent an emergent message to them and they arrived. We were incredibly thankful for the nurse being a strong advocate for our son because the situation needed to be assessed by a doctor and one was not coming. When they finally did arrive they viewed his trending numbers and stats, got him on vapo therm, ordered a blood culture, a blood transfusion, and then discussed possible causes. Then one of the doctors took Cael’s nurse outside of the room and scolded her for her actions. This upset me because what she did was right! She wanted to control the situation before it became an emergent one and if the doctor was really that tied up with the other patient, then another doctor should have been asked to come in to assist. We thanked the nurse but we also thanked the doctor for coming and stressed to her that something was seriously wrong with our son and something needed to be done before it was too late. They put him on 40% oxygen with 4.0 liters of flow and after a little while this helped bring up his stats. They still are not sure what caused this episode but they have a few possible things in mind. So needless to say, it was not quite what we had imagined the first family holiday would be like. :/

Today he continues to be on the Vapo Therm but by 4:00 AM he was down to 21% oxygen which is the level in room air. What is helping him the most is the humidified flow. The doctors want to try to wean him off of the Vapo Therm but we do not want them to go to fast because it seems like his body needs the extra flow and is benefitting greatly from the humidified air. Unfortunately we cannot bring in a humidifier for his room because of the bacteria often associated with them. So around 2:30 PM his flow was dropped down to 3 liters and at 5:30 PM to 2.5 liters. The speech pathologist stopped in to practice feeding but she did not know about the cannula and high flow level. So before we can start back with oral feeding, he must be below 2 liters of flow.

They took him off feeds yesterday with the throwing up and the respiratory issues. They restarted them this morning at 8 mL/hour to monitor how he does and if he experiences any acid reflux. He needed to get a chest X-ray to check the placement of the tube because it sort of looked like it looped back around into the stomach. The X-ray this morning was still inconclusive but Cael has shown no signs of it looping back. He is also receiving a medication to help prevent reflux. At midnight the feeds will go up to 16 mL/hour. Since his feeds are getting so close to target, they are discontinuing his TPN and Lipids infusions. Before we can start actually breast feeding, he must meet the goal of 20 mL/hour and be able to tolerate it in his stomach. He will be at 20 mL/hour through the ND tube at midnight on Tuesday. Hopefully on Wednesday or Thursday they will pull the tube back into his stomach (NG) and monitor how Caelin’s body responds. If he does well, we should be able to start breast feeding by Monday of next week. If his body is not ready, then we will give him more time.

His color and stats are much better today and his noisy breathing and coughing is very minor. Again, the doctors still are not sure what caused all of these recent symptoms but they are doing what they can to figure it out. Despite these slight improvements, he tested positive for Cocci in clusters, otherwise known as staphylococcus or a staph infection. :( Because of this they started him on antibiotics and are retesting to confirm. The initial blood culture was drawn from his left Atrial line. So to recheck they drew two different samples. The first came from a venus puncture blood draw and the second a urine sample. But the urine sample had to be sterile so they had to insert a catheter to pull out the urine. He was such a cooperative boy considering everything he had to go through today!

Room Air!

Caelin is finally breathing 100% on his own since the first time after surgery! :D No ventilator, no cannula- just Caelin. We are so proud of the progress he is making and the obstacles he has overcome!

In addition to having the cannula removed, he has conquered a couple more baby steps. His Fentanyl (pain medication) is now on 1 from 1.5. His TPN was lowered from 10 to 8 because his feeds have increased to 8 mL/hour and will go up to 10 mL by midnight. He has also went from rectal aspirin to crushed aspirin in his milk (this is probably his favorite part of today's rounds with the doctors).

The speech pathologist came by again today and of course Cael was sleeping, again. But today he was at least a bit more cooperative and showed her that he has a strong latch and suck on his binky. She gave Mommy permission to try to give Cael a "taste trial" with 1 mL of milk later on when he was more awake. Mommy did this, and Caelin did well. He seemed to like the taste and did not try to pull away from it as she slowly dropped milk in his mouth as he was sucking on his binky- the speech pathologist warned that pulling away happens often with infants like Cael right as they're beginning to feed. So tomorrow she is going to stop by again and we are going to see if he can continue to make a little more progress with oral feeding!

Over the past couple days his breathing has become a little raspy accompanied with a high-pitched wheeze. The doctors, respiratory therapist, and nurse practitioner are going to watch it over the next couple of days to see if it dissipates and/or try to diagnose it. They think it could be attributed to trauma from being intubated, partial paralysis of the voice box from surgery, or Tracheomalacia. If his breathing does not get better, they will have the ENT (Ear, Nose, and Throat Specialist) come do a scope with a camera to check out the area next week.

Because of the noises he is making while breathing, the doctors are concerned with him beginning oral feeds. Apparently one of the possible causes could be that his larynx does not close completely which makes the high-pitched wheeze. If this is the case, they have to be careful with feeding because it could cause aspiration. If too much breast milk goes into his larynx and lower respiratory tract ("Going down the wrong tube") it could be very dangerous. So as we are practicing feeding, he has to be on his right side to help prevent any milk from traveling down his larynx.

Three Weeks Old

Today at 4:59 P.M. Cael will be three weeks old. It is unbelievable how quick these past three weeks have passed by! We are grateful for every minute we get to spend with him and hope that time starts to slow down because at this rate everything will pass by too fast!

Cael had an excellent night last night! He only woke up twice from 10:15 P.M. until 8:30 A.M.! The first time he was awake for 45 minutes and the second for about 70 minutes. This was remarkable because he ended up sleeping for most of the day on Wednesday- his body must have really needed some good rest! Since Caelin slept well, that means Mommy got to sleep well, too!

This morning during rounds the doctors decided to continue weaning the Fentanyl and put it down from 2 to 1.5. The flow on his nasal cannula is down to 1 which is the lowest they plan to go before taking him off. They did put it on 1.5 but since the cannula is humidified, the flow being down so low made the machine constantly beep that the temperature was too high. His oxygen is still on 25%, but the lowest setting is 21% so hopefully they will attempt to remove the cannula tomorrow.

His feeds are being boosted from 2 mL/hr to 4 mL/hr and a speech therapist came in to help him try oral feeding. But of course when she arrived Cael was sleeping. He refused to wake up! She even tried holding him up and putting the binky in his mouth but he was out and didn't even budge. This disappointed Mommy because she was looking forward to him starting to breast feed today and shock all the doctors with how well he does. The therapist asked if Caelin had a time when he is typically awake but Cael has not yet established a schedule because of all the procedures and transitions he has had to make.

The one concerning thing of today is Caelin is beginning to exhibit some signs of apnea. About 6 times today, his heart rate randomly dropped below 100. Every time but one happened while he was sleeping. Initially this morning the doctor said it was nothing to be concerned with because it had only happened twice that we noticed. She said that it is typical healthy baby respiration but healthy babies don't get monitored so parents don't often realize. Although she did not seem suspicious of anything, it still worries Mommy very much. The nurses and doctors said they will continue to monitor his respiratory and heart rates by checking the chest X-ray, doing their daily assessment of Cael, and tracking his daily recorded heart rate and respiratory patterns. Hopefully it is nothing to be concerned with like they said this morning and that it will go away as he gets older and his body matures.

Ready for Food!

Caelin's progress has continued to be monitored closely by the team of doctors before making any big changes. So yesterday there were no big changes because they wanted to watch how he continued to do without the ventilator and on the half dose of Fentanyl. They only slightly lowered his oxygen level and flow through his nasal cannula. We are thankful it was a pretty basic day because Caelin was irritable.

Monday night he did not sleep well. Tuesday he still did not sleep well but was happier during the time he was awake. Then Tuesday night he did not sleep well again. Within a 36 hour window, Caelin slept for maybe 12 hours. When he was awake, his temper varied. But today (Wednesday) has been a little bit better. This morning Caelin finally slept for about two hours, was awake for about an hour and a half , and is back asleep going on three hours now. It is so hard when Cael goes through inconsolable moments, not because they last for a decent period of time but because there are so many variables as to what could be causing him to be upset. It could be because he has gas, is hungry, is experiencing withdrawl from his large dose of Fentanyl, is in pain, is uncomfortable laying in the same place, etc. It seems like the possibilities are endless. So we have been doing everything possible to calm him down- thank goodness for swaddling and a binky because that works most of the time.

This morning Caelin got his somanetics sensor off his forehead and his oxygen level through the cannula was dropped to 25 with the flow changing from three to two. Since the flow is now on a "2" he is able to get feeds. He has an ND tube which goes through his stomach into his small intestine. This is the feeding tube he had in place after he came out of surgery so they did not have to put in a new one. Once his body gets a little bit of food, they will pull it up a little so it goes directly into the stomach (NG tube). Then after he has gotten food in his stomach, they will start transitioning to mouth feedings. Although it sounds like it would be simple to do, it is a relatively challenging and unpredictable process. Each child is different in their transition with respect to time, comfort, and physical ability to adjust to normal feeding. The physical therapist, occupational therapist, and speech therapist will all be working together to help Cael adjust to oral feeding and life outside of the hospital. We are really hoping Cael's body will be ready for breast milk and that he will adjust comfortably to oral feedings! Here is a detailed website that explains enteral feeding and transitioning to oral feeding.

That is pretty much where he stands as of now and hopefully he keeps moving forward! Thank you all for reading his blog to check in on him. Keep on reading and we will keep on updating! Check out the number of views he has gotten on his blog already- he is a popular kid! :)

Procedure #4? That's Nothing for our Warrior!

Check out the footballs on his cheeks! The nasal tube needed to be taped, so instead of putting plain tape on, one of the nurses cut it into the shape of a football and added the lines! So cute.

*Updated- Results of Today at the bottom of this Post! :)

Over the weekend, Caelin continued to progress and do well. Saturday morning we got a room change. We were in room 510 which was right in the middle of the hall, in front of the technician station, ideal for children with HLHS (he is considered a blue diamond patient). We had to move to 515, which is a smaller room and has a view of downtown St. Pete instead of the Gulf and sunrise. We had to move because there was a little baby expected to arrive who would need ECMO (machine that provides cardiac and resperiatory support) and his room is only one of two set up for this support and there was a baby in the other room already on ECMO. But we are happy with the room change- we feel it has a positive aura. Mommy is superstitious with numbers and she believe "15" is a great number since Caelin was born on March 15th. :)

Cael has really been loving life without that chest tube! Now if only he were able to get the breathing tube out over the weekend, he would have been one ecstatic baby! Yes, the doctors had been working toward weaning him off the ventilator toward extubation but Sunday morning, they decided to hold off.

The doctors had hoped Caelin would be ready for extubation by 9:00AM Sunday. Although he exhibited positive signs and they could have tried it, they did not want to risk him not being 100% ready with going to the catheterization lab this morning. In the cath lab Cael would need to be re-intubated for the procedure and the doctors finally agreed that the risks associated with coming off the ventilator and then going back on in less than 24 hours was not worth the benefit of him being off it for only a few hours. This was a concern Sean and I had shared and expressed before and now that the time had come, the doctors expressed the same concern and decided just to wait. We were thankful for this decision because we did not want Cael to experience any more trauma to his little body- going to the cath lab will be enough for his little body. So Cael will be extubated some time after he comes out of the cath lab, we are just not sure how long it will take. The doctors say it could be as soon as tomorrow morning or it may take a few days. We are hoping his body will be ready within the next couple days so he does not have to breathe through the tube any longer- we know it will make for a much happier Cael if he can thrive on his own.

With Cael going to the cath lab today, this marks his fourth major procedure in 18 days. Mommy and Daddy really cannot believe everything he has had to go through so far- it's way more than anything we have went through combined. The procedure he is receiving today is not nearly as invasive or complex as the first three he has undergone but it still has many associated risks, specifically because Cael's body is so small and his heart is so fragile. The plan is just to insert a catheter in through the main artery of his leg, inject dye, and take pictures of the shunt to check its stability and flow. If the doctors and surgeon decide the shunt is stable and the likely hood of it clotting off is low, they will NOT place a stent. If they have any doubt and believe the stent will help the shunt significantly, then they WILL continue the procedure with placing a stent. Of course, we will update with what the doctors decide.

Respiratory therapy has been helping Caelin's lungs. They are no longer collapsed and look much better. Yesterday the X-ray revealed the right lung was a bit hazier than Saturday but they said overall they still look much better. To keep his lungs as healthy as possible, they are continuing respiratory therapy every 6 hours.

Caelin's Bilirubin level decreased yesterday but they left him on the blanket to prevent it from rising again. He was on feeds (breast milk) until 12 AM this morning. This allowed his little tummy to get some food and for his bowels to start moving. ;) With being able to poop and continuing the blanket, Cael's bilirubin level continued to go down and is now considered to be in the "normal range." The doctors have not yet said this morning if they plan on continuing the blanket today or removing it. Side note: Cael easily charmed all of the nurses here, making an everlasting impression on the first day. They all comment on how cute he is and that he is overall an easy baby to take care of (he typically only gets mad when he has secretions that need to be suctioned or when he needs a diaper change). With getting back on feeds, his tummy created some gas pains which of course agitated him- but the nurses continue to call him adorable. I must say, he is adorable, but he is also the only male I know who can charm so many women with farting.

Results of the Cath lab Procedure:

At 8:30 AM Dr. Stapleton came in to talk to Mommy before the procedure and he answered all of her questions and addressed her concerns. At 9:00 AM the cath lab team (anesthesiologist, respiratory therapist, assistants, etc.) came in to get Cael ready for the procedure. At 9:14 AM they took him back to the lab and Mommy gave him a "See you soon" kiss. At 9:59 AM one of the nurses called Mommy's phone to tell her everything went great in the cath lab and that Dr. Stapleton would be out shortly to speak with me. He arrived about 10 minutes later and explained the procedure was straightforward and had no complications. He also said that after he and Dr. Quintessenza (head heart surgeon) examined the pictures of the shunt they concluded it is good and stable on its own and it would NOT need the reinforcement of a stent. He also explained to me that the staff would continue working towards Cael's extubation and it would likely happen in 24 hours. After he left, Cael's nurse came into the room and said, "They extubated him!" This shocking, unexpected news made Mommy's eyeballs pop out of her head while simultaneously causing her heart to drop into her stomach. Dr. Stapleton had told Mommy before the procedure that they would not extubate in the lab AND he had just said it could happen a couple hours after the procedure or the tomorrow morning. Apparently the anesthesiologist and the rest of the team thought Cael was ready so they went ahead and did it. Mommy trusted their judgement but was still taken by surprised, having been told one thing while another was done.

Thankfully, Cael has proven the cath lab team correct- he was ready! He still has a nose tube to give him some support but that is common and expected after being intubated for 12 days. His stats have been good, his breathing has been good, and he has been awake and alert. His cough is raspy and he is working on getting his cry back (it currently sounds like a faint, distant cry of a cat). Having the tube out also allowed him to get his binky back! It took Mommy's persistence of about two hours before he trusted what she was trying to put in his mouth after having unwanted tubes and suction tools shoved in there.

He got a nice bath this evening and he finally got to be in Daddy and Mommy's arms! It was such a wonderful feeling for us to be able to wrap our arms around him and hold him close to our chest after almost 13 days. He was fussy right before we got to hold him, but he stopped instantly when he was placed in Daddy's arms. Within minutes he fell asleep and he slept when Daddy put him into Mommy's arms. It was not until Mommy said, "Alright, I am going to get some food buddy so you are going to go back in your bed," that he woke up screaming (quietly but with great force). Now this may have been purely coincidental but we think it's quite obvious that Cael likes to be in our arms just as much as we like for him to be there... and it had been way too long.

We are thankful for another great day and step forward. Again, so proud to be the parents of a resilient little warrior.