Can you believe it?! Shirley is already two weeks old! Let's do a small recap:
Born at UW Medical Center on 2/23/17 at 7:29pm, 7lbs 8oz, 18.5inches long! Then promptly transferred to SCH and admitted to the CICU. Surgery on 2/28/17 to make the initial repair of her truncus and patch her VSD! Chest closed on 3/2/17. Switched rooms on 3/6/17. Made her debut television appearance on 3/7/17!
Today, 3/9/17 is a pretty straight forward day. She is off milrinone entirely, down to 3L on high-flow, and fluid neutral. All great signs! There is a chance we will be leaving the CICU tomorrow (fingers crossed). She met her nutrition goals yesterday evening and is fed Brianna's breast milk fortified with some extra calories. They fortify her milk because heart babies burn more calories than they take in during their recovery from surgery and often times breathing and plain ol' living are more strenuous. She is still at her birth weight but if she keeps up this pace she will be plumping up in no time!
Shirley had her first appointment with the OT/PT's today. One of many. I think I mentioned in the last post how these little ones are behind the average child when it comes to early development. The instinctual things can be difficult and being two weeks behind is a long time for an infant. Today it was "oral skills." Suckling, swallowing and breathing are difficult and Shirley fought off the OT pretty hard today. She was also very tired and you will see some of the attempts at waking her up in the pictures I post. Her future OT/PT visits when we get home will be helpful in many other ways. Because their movements are restricted for so long after surgery its helpful to work on their range of motion down the road as well as other general baby skills like rolling over and other things that would have just come naturally. Pediatric heart surgery has come a long way and these days their is a focus on thriving after surgery rather than simply taking your baby home. The world of CHD is changing rapidly and there are a lot of people to thank for that. We owe a lot to the cardiologists, surgeons, nurses and endless other medical professionals but also the parents and other CHD babies who have helped pave the way to where we are now. Hopefully in a few more years the experiences of future heart babies will be even brighter than they are today.
Shirley had some visitors yesterday aunt Jen, aunt Mary, and aunt Brittany! It is such an interesting phenomena how infants can be an attraction and even a spectacle! Shirley, like most babies, sleeps the majority of the day yet all you want to do is look at her... anticipating, hoping, that she will move, smile, smirk, cry, suck on her pacifier, twitch, stretch, or maybe even toot. Babies get all the attention, I can't really explain why I want to look at her toes, nose, and elbows but I do.
Please continue to pray for little Shirley!
I also think Shirley is photogenic and here are some pictures to back up that claim. These are all from this morning when the OT arrived and we had to try and wake her up. hope you enjoy.
-Joseph
