Thursday, October 15, 2009

Playing Catch Up

It's been 3 weeks since Elle's open heart surgery and 1 week since we have been home. Oh how the time flies when you're having fun...and juggling doctor appointments!
Monday, October 12, 2009 - we saw both Elle's cardiologist and pediatrician. At the cardiology appointment - Dr. W said everything looks fantastic. He did a chest x ray and Elle's lungs are clear (which is wonderful considering the fact she has a horrible cough - so the cough isn't settling in her chest). He also did a quick echo to make sure there isn't any fluid collecting around her heart and around the places where her chest tubes were. Everything looked fantastic! We had to jump through hoops to get Elle's pain medicine. She is still on a weaning schedule to slowly bring her off all the pain medicine. Unfortunately, the only place around here that will fill the prescription is the hospital (which is an hour away). So - we had to make arrangements to pick up everything at the hospital. After the cardio appt - we went to the pediatrician. I absolutely love our pediatrician and was anxious to see what she had to say about all of Elle's vomiting. After a very thorough check-up - she deferred to the gastro doctor. Her thinking is that after major surgery - the body tries to fix itself in various ways. Some things are out of whack for a while and it may be that after surgery, Elle's reflux has just gotten worse. She's on 2 different kind of reflux medicine - so it may just be that we now have to change the medicines and feeding schedule. Ahhh! I hate this for precious Elle - I hate seeing her throwing up all the time! I hate Lee and I being stressed out about her feeds (where we were totally fine before surgery). I just hate worrying so much!!

Elle finding her fingers at the doctor's office

Tuesday, October 13, 2009 - We were supposed to have appointments with the audiologist and the cardiology outpatient clinic at the hospital but both got moved to Thursday - so Elle and I spent the day trying to finish laundry and rolling around the house in her stroller. We just started putting Elle in her stroller with her facing forward. We haven't ventured out in public with her facing forward - but it sure is fun to wheel her around the house and then let her watch baby einstein video's from the comfort of her stroller.

Chillin' out max and relaxin' all cool (my mom's reply when I emailed her this picture was priceless - "She just needs a drink with a small umbrella in it!")
Happy Baby
Wednesday, October 14, 2009 - I went into work for a few hours to finish up some mini projects. My mom watched Elle. I was so worried about leaving Elle - knowing that she has been throwing up. Sure enough, she threw up after one of her feeds. Thankfully, mom was prepared and had everything taken care of. My favorite time of the day is when I get home from work with Elle or on days I work from home - when Lee gets home. I love the few hours in the evening when (if) Elle is awake and we get to be a little family. She is the center of our world and we love her so much! She is such a funny little girl. We will all curl up on our bed and she will look at Lee and smile and then roll over and look at me and smile. I just love them both so much!

Lee and Elle - working on sitting up - she is doing so well!

Thursday, October, 15, 2009 - Oh what a day! We spent all day at the hospital. The first appointment was with Elle's audiologist. We all just love her (even though she went to LSU) - ha! Having wonderful doctors makes the time we spend in the hospital (outpatient and inpatient) so much more bearable! Elle needed to get new ear molds made and we wanted to see what range she is hearing at with her hearing aids. One of the tests that we did was in a sound booth. I held her in the sound booth and Dr. E talked into a microphone to see Elle's reaction. Elle wasn't facing me so I couldn't really see her reaction to the various noises - but when we got out of the sound booth, Dr. E (and my mom) were super excited. Based on Elle's reactions to the sounds - it appears that Elle is hearing at a pretty normal level with her hearing aids! That was totally cool to hear! We will go back in a few weeks to get Elle's new ear molds and do a little more testing just to see exactly where Elle stands on her hearing. It was a wonderful appointment - we even walked out with some new ear gear. Since Elle is constantly pulling out her hearing aids to put them in her mouth, Dr. E gave us hearing aid "huggies." They go over the hearing aid and kind of attach around her ears. Yeah - they didn't work because 2 minutes after leaving Dr. E's office - they were out and in her mouth. Crazy kid! After audiology we went to the cardiology clinic. There was a stitch that didn't dissolve that needed to be taken out. It wasn't a huge ordeal and we were in and out in about an hour and on our way home!

We see Elle's gastro doctor tomorrow. I can't stand her throwing up anymore and I am praying Dr. Reid will be able to offer some answers. Before the puking started, Elle was getting 180cc every 4 hours 5 x a day. Now, we have cut her back to 90 cc every 2 1/2 hours - which means early morning feeds are back in the schedule to ensure she is getting enough calories. I hate having to stay awake until 2am or after to be sure she gets enough to eat. If I fall asleep - there is no way I'm waking up so it's easier just to stay awake. 90 cc seems to be the magic number - any more and she pukes. Oh the trials and tribulations!

I learned 1 new thing today. "FBO" stands for Facebook Official - because nothing in life is official until it's posted on Facebook.

And..another quick stand on the soapbox - if you have your company name plastered across your car - learn how to drive! I would think that if you were daring enough to advertise your company on our car - you would at least use blinkers when you were swerving across lanes of traffic..or perhaps - slow down instead of tailgating other drivers - and maybe just maybe - not text and drive. I googled the name of the salon that caused me so much grief on the drive home today - if I'm ever in Conroe - you can bet I'm not going to be going to that salon!


Jennifer said...

That's great that her hearing aides are working so well! I completly understand on the throwing up, we are finally getting in to see a GI doctor! Hope it all gets straightened out and you get some sleep!

mrsrubly said...

what a little ham! thanks for the update. i have been worried about elle belle! look @ her huge smile! i am also so happy to read about her hearing and her gear! i hope they can stay on better! till next update. keep us posted. continued prayers comin' your way luphers!