Well, friends and family. ... we had her back for a week or so. I guess it was almost 3 weeks this time. We got her home on Thanksgiving night. We held our own for those few weeks for a while. The hard part was ALL Adrienne's for sure. She had to haul Olivia and her apparatus to the various doctors that she had to see. We had put in a request for a small much more portable O2 canister, but it never happened. And since they put her on O2 (that's oxygen to all you non-science folk) we had hoped to get the pulsamoter (sp?) which is the little sensor that is wrapped on her feet and keeps a running record of the O2 level in her blood ... they have these on the little ones in the NICU all the time ... so, we saw some doctors and changed some medication amounts and adjusted the feeding times and tried to keep the little one in the right way.
She started to have a bit more trouble breathing late last week. We tried to suction out any of the mucous and excess junk in her nasal cavity, but did not have much luck. They weekend was much rougher, and Adrienne probably slept around 8 hours all weekend total. She is the one who always be there for Olivia, and she doesn't miss anything.
We wondered what we should do for her ... should we go to the ER again ... (that was not a favorite idea for sure) we called the various doctors, but they were hard to reach. Olivia would have some down time, that seemed to be going well, and then she would wake up and be in a bad way. SO. ... on Monday, Adrienne called our cardiologist and told them that she was bringing Olivia in. They made room in their schedule for her. After a chest X-ray and some other checking, they decided that she needed to be checked into the hospital. Her breathing was so labored and her vitals were bouncing all over the place. I think the first night and last night too, were really rough for her and Adrienne, (Adrienne has stayed up there since Monday night, and will be there until Saturday, when I will not be at work). ... They went through various diagnosis steps and decided up pneumonia. They have been unable to find any bacterial infection or any easy to label viral infection. (no RSV or anything like that) but she had too much fluid in her lungs. Our cardio specialist decided that when she is stable, they will do the PDA procedure. This is a relatively simple surgery, that will clamp off the vein that is still open on the two arteries that leave the heart. This is the main culprit in almost ALL her ailments.
Once this is taken care of, her breathing should improve and she should have a better chance at growing and developing. They also diagnosed her with secondary pulmonary hypertension. This is because of the heart defects that cause her heart to work too hard and the lungs still were not pulling enough blue blood and returning enough oxygenated blood. The two were mixing at the PDA sight ... so, she is stable but not in an alert or active state at all. They have her all hooked up and intubated to have a machine do most of her breathing for her.
Now here we are again just waiting for her to regain some strength and for her chance to have her surgery. In the meantime, we are just hanging in, I am the solo parent at home for this week, and my folks and Adrienne's mom have been doing daytime kid duties with Sara and Andy.
Merry Christmas to you all out there, and stay in touch, I really like to get some emails from you all with your words of encouragement ... I will post again as I have some more news and time to do it ...
— be seeing you, Andrew
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