Olivia is back at the hospital

Well, after being home for a week and having a visit to the pediatrician, who is our the Dr. for Andy and Sara as well, we started getting somewhat of a routine. This involved Adrienne not really sleeping. Not a great routine. She had to have feeds every 3 hours for a 30 minute interval with 10 - 15 minutes on either side preparing the food and cleaning up afterwards. Also she has 3 meds to take and of course diapers to change. Our home nurse came by too, and didn't really have too much to offer I must say, but it may help to have a professional around once a week to check it all out. Adrienne did most of the feedings and stuff, since I had to actually go back to work. I did the 11 pm feeding and hopefully had Adrienne asleep by 10 pm so she could get up and do the 2 am feed ... so we had a system going ... Adrienne would get some sleep, I would do dinners and keep the kids from killing each other from cabin fever ... THEN ...

Adrienne didn't like the way she was sounding on Wed the 17th of Nov. She called our Pediatrician and she called Olivia's cardiologist and it was decided that she should be brought back to the hospital. So, Adrienne took her up there and dealt with the parking nightmare and the ER nastiness and finally got just snippy enough to get what she needed for Olivia, which was a clean quiet place to feed her. (This G-tube feeding is not real hard, but you pretty much want it to be done in a sterile environment.)

SO, she was visited by doctors and poked and prodded and finally admitted. And that's where she is right now. She has a room again but not in the NICU (which is too bad, because now she does not have some one looking after her directly full time). The residents and general doctors seem to think that her heart is giving her trouble and the cardiologists are sure that she is just sick. So, they have just about ruined every possible vein drawing blood and generally trying to find out what she has.

OK she is a CdLS child. go and do a google search on CdLS and find any web sight that is an "org" and read about it. These kids are highly susceptible to illness while they are young. Even more so than preemies in general. She probably caught a cold that one of us here at home has been carrying around. Andy is in preschool and has the sniffles ALL THE TIME (or so it would seem) and Adrienne had a cold start up the day Olivia was released. Even though Andy actually washed his hands before getting to touch his sister and Adrienne wore a surgical mask too, she still got sick. SO, Adrienne has been spending the night up at the hospital and this has become much more emotionally difficult than her just being in the NICU or even being diagnosed as CdLS and having the prospect of those difficulties ahead of us.

To top that all off. ... Andy woke up early (I am real early, dark early) Sat am complaining of an ear ache. So, we made it through the rain (on balding tires too) to the Pediatrician's office for the 8:30 am opening and found that he has a pretty standard ear infection ... he was in real pain off and on all Saturday. I got him meds and sat around watching it rain and watching him sleep and waiting for the auto shop to put new tires on my car. ... oh fun day!! As for Olivia, we hope that she can come home this week. And when she does, there will be no visitors for her. I am sorry, but even if she was just a "normal" premature baby, the doctors highly recommend that visitors stay away ... my folks and Adrienne's folks are probably the only exceptions. After this past week, with her getting sick, and having only close family visit and she still getting sick ... I have to follow that advice if I follow anything. If we are lucky, she won't get more ill being in the hospital and being touched and handled by more people (you can hear some nurses and / or doctors coughing out in the hallway, boy am I really feeling confident now) who may or may not wash their hands properly before handling her. ...

I know she has to get her immune system kicked into gear, but with the heart issues along with it, she has a couple of strikes and multiple foul balls already. ... It would appear that she just caught the RSV perhaps or some other version of the common cold, since her nasal cavity was all full up and they had to suction it out periodically ... ARRRGHHH. and now to top it all off ... this horrid rain!!! I think half of Texas will have some sort of cough, scratchy throat or runny nose now, so that's how it is going. If you see me or call me I will sound upbeat and all that, but it sure is getting to be a drag for us and the kids and especially Olivia. Keep in mind that I am writing this at 11pm at night of the end of a LONG 5 days of rain and sick kids ... so, I am kind of ranting. besides that, things are going just swell.

until such time, Andrew

Olivia is home

This post by Christian ....

Actually, I'm going to start with a note from Andy to us ...

Crit,

hey man, sorry to not let you know how things are going ... She is home ... came home last Tuesday.

Very high maintenance. We are doing well and Olivia is already more of a baby now, with some of the little behaviors that is expected ... like moving her hand to her mouth and just generally reacting to voices and of course crying pooping and sleeping ... Thanks a ton for dinner and for making room in your schedule to hang out for a bit. I know the kids had a blast ... and some day we will actually hang out until those wee hours just sippin' beers and talking ... until then, give our love to all and hope to hear from you and/or see you guys again soon.

This e-mail stemmed from a visit we paid to the Schultz's Nov. 6. We were able to hang out for just a couple of hours, going to dinner together and then visiting a little after. Adrienne had just come back from the hospital where they were learning more about when Olivia could come home, and that happened a couple of days later.

So, Andy and Adrienne ... we are happy that your girl is finally home and our prayers are with you. Let us know if there is anything we can do ...

-- Christian