First bottle!!

Kailey had her first bottle and she took 22ml without a problem! I'm so excited! She's a big girl now, she even got a big girl crib at the hospital.

Update

Kai is doing very well! She is off the ventilator and on a little bit of oxygen. Monday ENT will be changing her trach then one day next week speech therapy is going to see what she can do with a bottle! And she will be able to get out of the bed to cuddle and swing! She is such a happy baby nowadays!

Surgery

Kai is in surgery at the moment, it's suppose to take around 2 hours. Hopefully they get her sedated before she does something crazy again. As we were walking into the hospital this morning we get a phone call. Kailey self extubated again. This little booger does things on her terms and no one else's.

Tuesday..

Surgery is set for tuesday morning, she will need 5 days to recover then she will good as new. We will actually get to hold her all the time and she can start learning how to eat. We should be able to find out within a week or so if she is going to need the home ventilator or not, which will determine how long we will be stuck in the hospital.

Getting ready for a trach...

Kaileys upper airway is abnormal from having the ET tube in so long and being reintubated so often. Don't know when the surgery will be yet, still waiting for ENT to talk to us. She may or may not need the ventilator after she heals from the surgery but if she does our stay is going to be muchlonger. She will have to double her weight before she can be put on the home ventilator. They said they have a room here that is kind of set up like an apartment that we would be able to stay in while we learn to care for her trach, and there is lots and lots of learning.

Update

Anesthesia just called to get consent, so hopefully today they will actually be checking her airway and lungs instead of letting her starve again for no reason. Kailey has not wore clothes since she has been here b/c she stays on the warm side, eventhough she's in an open bed! She's such a tiny big girl now. We got into the RMH, IT'S HUGE! omg ive got lost 5 times already. Everyone is telling us not to walk to/from the hospital after dark, so we've been coming back to RMH at 7ish and it sucks. I'm so use to being in the nursery until 10ish. There's a lot that's different here and it's taking time to get use to. We have to sign in and out anytime we leave the floor, which is a little insane. But they never have to call to see if it's okay for you to go back b/c it's always okay. Apparently there isn't a time we are not allowed to be in the nursery (unless there's a situation with a baby). But the nursery is huge, I can't even see the back of the nursery to tell how many babies are in there. They have a child life specialist that does activities with the parents and brings learning toys for the babies, yesterday we decorated our own onesies.

Prayers for the Lakes

Everyone please keep our friends from the Lexington RMH in your prayers, they just lost their precious baby Alyssa. My heart is breaking for them. Jason and Amy, i'm so sorry for your loss. We fell in love with her the day they brought her to nursery 1 and I wish we could be there for you. You will always be in our prayers.

Cinci

So Cincinnati children's hospital is huge and the parking garage is confusing. I can find my way from the car to the nursery but that's about it. Kailey is doing good, shes starting to get aggravated from being bundled so much but the couple times they unbundled her she went straight for the tube and started pulling. So they are going to just let her hang out until the end of the week when they can do the bronchoscope then they will figure out what the plan is. We will be sleeping in the car ad getting a meal voucher everyday until we can get into the Ronald McDonald house. I can already tell it's going to be an awesome week. *sigh*

Monday

Is the big transfer day. Cincinnati is sending their transport people to get Kailey....sooooo much to do before Monday, but I've almost got everything packed up. We have accumulated so much stuff in the 3 months we've been here, really wish we didn't keep forgetting to get people to take the stuff we don't need/use back with them.

Failed

Got a phone call at 2:30 am...Kailey self extubated so they tried her off the ventilator, she didn't make it 15 mins before she had to be reintubated. So we are going to get the paper work started today to send her to Cincinnati and she will stay there until she can either go home or be transferred to pikeville.

Change of plans

We will be extubating tomorrow and if she fails we will be in cincinnati as soon as possible. The doctor still doesn't have much faith in her being able to stay off the ventilator so I guess it's time to start packing just incase.

good luck Zoe!

Kailey's little buddy Zoe got to go home today! I hate that we won't get to see them anymore but I'm so excited they finally got to go home.

Preparing for Cincinnati...