Well...
It seems that some of Ruby's problems over the past couple weeks might have been due to a cold virus. The exact thing we are trying so hard to avoid. Luckily it was a mild one. On Thursday I noticed she had a small pimply looking rash on her chest, by Friday morning it had spread to cover her whole abdomen and chest. We went to the pediatrician, yesterday afternoon. The going theory is that she has heat rash or it's left over from the virus. Either way we can't do much other than watch it and keep her clean and dry. We don't take her out much at all. It has been really hot here, unusually hot even for Texas. We are diligent about washing our hands, and making everyone who touches her do so. Chris and I think she caught something on the plane. The day we flew home was the last time she took a full bottle. Since then her bottle feeding took a huge turn for the worse, and her breathing was slightly labored. We also tried to stop the diuretic during this time, too. I'm guessing we're dealing with another situation that had many causes. Her lungs are back to sounding "perfect" and I'm going to try my hardest to keep them that way. We were lucky this time in that it was short lived thing and she was able to fight it off. We can't stress enough how important it is that she doesn't get a respiratory virus.
Please when you meet Ruby, don't touch her unless you have washed your hands. We want our friends and family to meet her, we all need to be very careful. Last week involved many sleepless nights of listening to her breathing and counting breaths. Ruby already has to work harder than a healthy baby to breathe so determining when she's working harder than her normal can be tough. Plus the receptionist at the pediatrician's office knows my voice and that's not something I feel proud of. We understand that kids get sick, but Ruby isn't a normal baby.
We've got few weeks left before we go into hibernation for cold and flu season. The past couple weeks are a good reminder to Chris and I that Ruby needs to be a bit antisocial this "winter". Not that we really have a winter in Texas. We have been told large open areas that aren't too crowded will be fine. Meaning we'll be able to take her for walks or cook outs. Luckily we have a mild winter here and we'll be able to get outside and do things. Maybe for Halloween I'll dress-up as a an octopus and instead of ink I'll squirt hand sanitizer.
On the plus side her bottle feeding seems to be picking back up. We are almost back to where we were a couple weeks ago. Which again makes me think she did have a bit of a cold coupled with the diuretic wean.
Any tips from other CDH parents on how you deal with colds and the winter season, please let us know. Ruby will be getting the RSV shots starting in October.
Here is our 11lb 2oz bundle of joy. She's averaging an oz a day, which is perfect! The more she grows the stronger her lungs get.


Wish I could give you advice
Wish I could give you advice but I'm here more for the cuteness of Ruby. She has made a lasting impression on me and I think she's just come so far. I hope the upcoming season will not be too tough on you guys. ....I'd just start making her shirts with little pockets for the sanitizer. Pray all is well and that her little cold and rash will subside soon! Chanda
Cold and flu season is
Cold and flu season is nervewracking for most parents with new babies....I can't imagine what it will be like for you and Chris. Sounds like you have an excellent plan though and people will be understanding. If they aren't then they don't need to see her. You might consider asking your close friends and family who will have regular contact with her to get their flu shot or else they can't be around, either. It sounds extreme but it's for her safety.
I'm so glad to hear the bottle feeds are coming back up. Yay! :)
Hugs from St Louis-
Tami, Chuck, Aisling, and William
Trying to stay away from
Trying to stay away from RSV/cold/flu season is so hard. We put Weston into isolation (October-April) when he came home from the hospital in October. We put a sign on our front door asking everyone to take off their shoes and wash there hands before they came in contact with Weston, a lot of our friends stayed away because they were so worried about giving him something. Weston caught pneumonia after a month of being home, it was so scary he was blue when we took him into his pediatrician. Which put him back on oxygen. In March he caught RSV, which was turning into pneumonia, which was also a very scary experience of being in the hospital for another five days, three in the PICU, they wanted to put him back on a ventilator but they put him on vapor therm at 10 liters(it was bad)and he had just gotten his syringe shot for RSV. Just know if she gets sick, its nothing you all did, we tried so hard with Weston to keep him well, plus he has an older brother, so maybe you guys will have more luck. Praying for you all especially with cold season just around the corner.
My name is Ashley Jackson
My name is Ashley Jackson fellow CDH Mom. Our first winter was also the same time she was discharged. We kept hand sanitizer in every room told everyone that wanted to come over had to be healthy and if they had a cold in the past month they shouldnt come. I was very selective with who held her. I also ordered a sign to hang on her carseat and stroller. (Please wash your hands before touching mine) If we had to bring her out in public we put a blanket over her carrier. Those are just a few tips I can give you. Claire still ended up in the hospital that April with Bronclioitis but she hasnt had RSV yet! Good Luck!
I think the octopus costume
I think the octopus costume sounds awesome!! Love seeing the pictures of her all smiley and happy. She sure likes sticking her fingers in her mouth, huh?! Hugs and love from IA (by way of MN)