Getting Ready for My BIG Week

Having a serious conversation with Aunt Cassie. 

To put it simply, I'm a stud.

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

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

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

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

My new outfit! Check out my kicks. :) 

I love being cute! 

Caelin, Daddy & Aunt Cassie

Mommy, Caelin & Daddy

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

Uncle Tristan, Caelin & Mommy

Tummy time! 8.5.12

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

Aunt Cassie putting me to sleep.

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