5, 4, 3, 2, 1, 0

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

First picture after getting his nasal cannula removed!

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

I am five months old? WOAH! 

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

Mommy & Me on my 5 month birthday!

Dad

5 Months Old

4 Open Heart Surgeries

3 Surgeons' Expertise

2 Bright Sparkling Blue Eyes

1 Little Warrior

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

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

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

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

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

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