A week of steroids...

Kailey is starting a week of steroids today, and we will be having a care conference with her doctor on Wednesday. Not sure what day we will try to extubate her but if she fails she will be shipped to Cincinnati. The ENT's here are not comfortable working on infants so all they will do is a bronchoscope (which they have done) and put in a trach. We know that her vocal cords are swelling so if that is the only problem Cincinnati ENTs should be able to fix it and if not at least we know we have tried everything before traching her.

Once again...

Kailey has failed extubation. They have been lowering her ventilator settings over the last week or so and got her pressure/rate/o2 down to the lowest they have ever been. She was extubated at 7:30 am on 4-26 (her 3 monthaversary and was doing awesome up until 6:00pm. They said she was working to hard to breath and kept dropping her SATS. BUT her heart rate didn't drop this time which I would think is still an improvement eventhough she still had to be re-intubated. We can't sleep, so its 3am and I'm writing this and Barry is reading a comic book. We MUST be at the hospital for rounds tomorrow to see what the plan is going to be this time. They are already talking about having a care conference to discuss a trach. So we have been researching trying to figure things out. I really don't want her to have to get a trach unless it's the only option....
On a brighter note, I held Kailey today to calm her down and get her to stop holding her breath...look how pretty...

Weight gain...

Kailey is now 4lbs and 2ozs....and 16 inches long!!! She's getting so big!

Tired

I believe the last 3 months are catching up with me, I'm so tired. I'd love to just be able to sleep for 5 straight hours; no pumping, no light, no worrying. Having a lazy day at home without having to leave the house would be amazing, I'll never take being bored at home for granted again. I can't wait for kailey to come home, we will be locked up in the house for 2 months except for her doctor appointments. I believe that's the best doctors orders I've ever heard.

Failed

So once again Kailey failed extubation. She made it 14.5 hours on the nasal cannula then had to be reintubated. Her SATS and heart rate dropped and they couldn't bring her back up high enough by bagging her so they had no choice but to reintubate. We finally talked the doctors into checking her PDA again. The only time it has been checked was 2-15-12, it was a small PDA at that time but who knows, that could be what is holding her back. She breaths fast, her numbers go up to 130 on the machine for breaths per minute. Her nurse always comment on her murmur. And she has a high heart rate, all of which could indicate PDA. So this is suppose to happen Monday, along with a bronchoscope....
If people would listen to us and the nurses that have actually taken care of Kailey things would a lot better. Apparently Kaileys primary nurse was fighting for her this morning. She was pissed off that they extubated yesterday when they were suppose to wait until today and that they put her on the nasal cannula instead of the CPAP mask...sadly I believe I'm going to eventually get kick out of the nicu, I can't keep telling myself they went to school for this, they know what's best. They can't possibly know what's best for her just by looking at her chart.

Trying again...

Tomorrow Kailey starts another 3 day course of steroids and she will be extubated on friday. Hopefully she will be able to handle it and stay off the ventilator this time. I'm so scared she's going to have a nurse that doesn't know her and won't be able to get her heart rate up if it drops. It's going to be another sleepless night for me. Kailey had her eyes checked again, this time they found something. Not to sure what the lady said but she's going to check her eyes weekly now....Kailey had a wonderful Easter! I made her a pretty purple dress and we took pictures. We found a Easter basket outside our door at the Ronald McDonald house and beside kaileys bed. One of my favorite workers here talked to a church about how much we are struggling trying to stay here with our baby and the next day they dropped off a card for us with 100 dollars inside. We were down to our last 30 dollars and wasn't sure how we were going to get lunch for the next month or so, thank you lord for sending them to us!.....Kaileys BFF may get to home next week! I'm excited for her family but I'm going to miss them.

New Doctor, new plan

So this months doctor is still going to fatten Kailey up, but she let us know this morning that we are going to do steroids again then extubate (after she gains some more weight). This morning we were surprised to hear that Kailey self-extubated last night, I don't know the details but it must not have been to bad b/c they also lowered her rate to 15 last night. She is now sleeping more and acting happy while she's awake and she's actually taking more breaths of her own now instead of relying on the ventilator. I'm pretty sure she didn't like her rate being on 40 with her o2 in the 40's as well....every time Kailey gets intubated she has a bruise or a spot that's missing some skin, tonight I noticed a large bruise on her leg. How does a baby get a bruise like that on her leg unless she was mishandled? I can understand the bruises and places on her chin when she gets re-intubated (I don't like it but I can understand it) but her leg?! HOW? Ugh..she also had a little spot of missing skin under her double chin (yes, 3lbs and she has a large double chin lol)