Happy Limbo

Happy Limbo

Written Feb 1, 2012 9:20am by Amber Gannon Medina

Our time at the hospital has become a slightly stressful and happy limbo. 

Mira had her Cardiac Cath this past Monday and she did so well. I was the one who was a nervous wreck! After going through the possible complications, and after hearing some cath horror stories, I was imagining worst case scenarios. Even her anesthesiologist warned us that because of her history of prolonged intubation, she would most likely come back intubated and stay that way for a few days. 

I came to the hospital early-imagining Mira being woken by the cath team and being terrified....Not in the least! She woke up happy and smiling and we played together for awhile (she loves her toys! Her mobiles, mirror, stuffed animals and a colorful puzzle toy are her favs). When the team came to cart her away, she just looked at me and grinned-"its OK mom", the conqueror said, "I've been through a lot worse, this is old hat for me"!

When we saw her later that day, she was a little fussy, but was moving around and wanting to look at her toys and mobile-AND extubated!! Ah-HA doctors-sure fooled you!

Although the doctors will talk with us this week about the specifics regarding the findings from her Cath, her doctor let us know that although the "anatomy" of her heart showed no surprises,her heart and lung's pressures were not quite ready for her Glenn Surgery. The doctor thought it might be a few weeks before the pressures lowered and they were able to do her surgery. Although this is way over my head, we understand that the pressure in her circulatory system needs to be low because the Glenn Surgery will rely on gravity and not her heart to get blood to her lungs. If the pressure is too high, the blood will be pushed back to her heart and not be able to get to her lungs. Mira will have a whole new and unique circulatory system!

So it sounds like we wait. And that's not such a bad thing. Mira is discovering some really fun things-we brought in her bouncy chair and swing and she loves to bounce, vibrate and swing while she listens to sea sounds and watches her mobile. We've taken her out in her stroller and walked up and down the unit's hallways-she loves looking at all the lights and listening to the new sounds. We are even able to take her to the large plate glass window that looks out over the hospital campus and show her cars and lights and roads. She just sticks her tongue out and widens her eyes and moves her arms and legs-Oh yea people, I am getting ready for all of that!!

They are also trying to feed her through her NG tube and into her stomach rather than her intestine. I feel pretty satisfied that I got projectile vomited on yesterday, but a little sad that Mira hates spitting up...I keep telling her-that's a normal baby thing Mira! Babies do it all the time! We are hoping that she can tolerate the tummy feedings, but know its difficult for a gut that hasn't been fed for 3 and a half months.

I cherish this time with her. Even though it still feels stressful and uncertain and the hospital is not my favorite place, it still feels like this is the first time we've been able to really interact with her and enjoy discovering new things together...And most importantly, it feels like Mira is a lot less miserable and way more content-that makes me feel truly happy.