Friday, September 08, 2006

Wednesday and yet another mystery and diagnosis...

The minute I awoke Wednesday (about 4-5 hours later) I wanted to get back to Sadie, of course. When we walked into the room that morning, it was fabulous. Nothing was beeping, her 02 had hit the 90s, her blood pressure was good. They had added Nitric Oxide to assist with her 02 levels and that had seemed to help a lot. Unfortunately we found out there was a new problem – she had pulmonary hypertension. While it can be a common side affect of TGA, VSD and/or ASD (all congenital heart defects) they don’t think it’s related this time. It could be a problem due to an infection (which was later ruled out) or a problem with the lungs. So they put her on Alprostadil to help the blood vessels relax. While Jason and I were there talking to her, she fluttered and tried to open her eyes, and little tears came out. No words can describe what I felt by that tiny movement – but it was something like hope, joy, heartbreak and the deepest love imaginable rolled into a second.

We headed to the hospital, and our families came to see Sadie for the first time. We are allowed visitors, and took them back to show off our beautiful baby. It’s weird – no matter what is wrong with your child, there’s this huge swelling of pride you have when you show them off for the first time. My little girl is such a fighter – the nurses all comment on how feisty she is (though now, of course, she’s heavily sedated and paralyzed with drugs – but she still tries to fight it). Thatta girl!

And, Katie got to meet her sister at last. It was so hard for me to watch. All pregnancy I'd had visions of what it would be like - Katie holding her tiny baby sister for the first time, being there at the hospital with me, getting to hold her tiny hands. Not in my worst nightmare would I have imagined this day. This being said, Katie did great,though, and it was good for all of us to be together for a few fleeting moments at last.

The hospital here is awesome and has lots of stuff - Katie went exploring with her grandmas and aunt and found a rabbit named Harvey in the children's center down the hall. They have preschool daily here for patients, but siblings are also welcome to go, so we can have her here with us and supervised when needed. The nurses & teachers we met in there were awesome,and I wouldn't think twice about letting her stay. Plus it was a pretty sterile environment - more than any other preschool I'm willing to bed. She also found a play area with mini basketball hoops, area to run, a slide, etc.

Throughout the day Sadie continued to seesaw, though not as much as in previous days. It looked like she was getting a little better in terms of stabalizing her vitals. But it was too much to consider surgery that day, so they removed her from the lineup. It really was hard to hear that we'd have to wait longer. I just wanted her fixed and on her way home with me.

At the end of the day, the family left to go back home. I can't thank them all enough for being there that day - I was rude, tired and mean, but they all were so supportive (sorry guys) and I can never thank them enough. Mom and dad have been helping with Katie almost constantly since Sadie arrived, which I know hasn't been easy. Katie wants to be with mommy and daddy, and believe me, we want her here with us, too. It's just not feasible right now until things stabilize. Carl and Kim (Jas' brother and sister) came down to be with us. And Jason's parents were here, of course, too. Everyone pitched in with Katie at the hospital and helped in his/her own way and it's been such a big help. Plus, the calls and emails from other family and friends kept us all going. Every time I thought I just couldn't handle any more, I'd get a boost from a friend or family member at just the right time. Thanks. :)

The night was better - I had a new nurse to hang out with and it was quiet, with only one big crash in vitals caused by fluid buildup in her lungs. Once suctioned it took a long time for the stats to go back up. Every time this happens the minutes start moving like long, stretched out days until she's back up. Once stable again I went to the hotel for a couple of hours of sleep, but couldn't get there. Jason had taken Katie home for the evening and to get supplies (you know, stuff like clothing, which we didn't really have here) and spend some "normal" time with her. So I was alone here and just couldn't get myself to let down. Even being away for the two hours was too hard for me, so I went back to the hospital in the early hours of Thursday morning.

No comments:

Post a Comment