Pretty round head

Hopefully we're back on the cannula... for good..

3 steps forward & 1 step back

That's right.. My sweet girl is back on the CPAP. The cannula wasn't doing a very good job at keeping her lungs all the way open and it was wearing her out a bit. When I came to the hospital today she was very very fussy so the nurse sat me right down and put her in my arms. She calmed down so quick! Made me feel so good!! We snuggled for about 2 hours.. She's had a taste for what life is like without an elephant nose and I'm thinking this second time on the CPAP won't last long. I hope she can get her act together. Last night, the doctor informed us that she really does have an infection. Antibiotics were started yesterday and hopefully it will kick it. The doctor mentioned something about NEC and I had a minor panic attack. If she has NEC, we may need surgery which means another trip to Primary. I say NO WAY. I don't think it is that bad because she's still getting milk and digesting it just fine which is a good sign. I think we will just be waiting a day or two to see how she reacts to the antibiotics.

She has a face and it's a CUTE one!

The CPAP came off today! No more elephant baby. She is doing fabulous on this new REGULAR (not high flow) cannula! She was actually desating, having brady spells, and being extremely fussy on the CPAP and now... she's much much better! My little girl is a rockstar! There is nothing this girl can't do.. I'm serious. Look at her beautiful face! It's a little dirty because she's had nasty nasty tape stuck to it for the last 2 months.

Take a deep breath.. Are you ready for this??

We are OFF of the ventilator... YES I said off. COMPLETELY. Can you believe it??? She was on the regular ventilator for one day. She's A-MAZ-ING. The nurse called me this morning and said get in here because you've got another big day ahead of you!! We have graduated to the CPAP. I'm not a huge fan of the CPAP because it makes her face all scrunched and she looks like an elephant and she has to wear this awesome head gear thing that makes her look like a wrestler from the '70's. BUT now she has nothing down her throat which means we can finally hear her cry! Her voice is real scratchy right now but it will get better and she'll be howling like one of your own.


So this CPAP is a little machine that has 2 spokes that go up her nose a little bit and it just pushes air into her lungs. She takes her own breaths but this helps to push her lungs a open a little bit more. If she doesn't tolerate this then they will have to intubate her again and we will be back on the vent. Right after they tried the CPAP, she was not having it so they quickly decided to try skin to skin to see if that would help her calm down. It totally did and I had her on my chest holding her for an hour again! It was awesome! Hopefully she's recognizing my heartbeat and my smell and knows that I'm her mommy.. She seemed pretty happy.

Don't worry.. there were no nip slips. These photos are rated 'G'. :)



Here's a video of my growling elephant baby. They were adjusting the tube in her mouth and you can kind of hear her cry.. It sounds like a growl but she will soon get her voice back and she will sound better.

BEST DAY EVER.. really!!!!

Best Day Ever Reason #1

Today we got a freezer... FOR FREE!!! We found an ad on KSL for a 10 cubit foot freezer so Clint called them this morning. It's only 3 years old and is perfect! They had someone coming around 3 today to look at it and Clint said we would come over right now. They said yes.. and we loved it.. and it's ours!! Now we have a place of our own to store the ridiculous amounts of milk I'm making!

Best Day Ever Reason #2

Clint had a job interview today... and HE GOT THE JOB!!! He starts Monday and he will be a parking attendant for UVU. He is the bad guy that gives out the tickets to all of those dumb people who can't read parking signs. I think he will find this job very satisfying and I'm excited for the stories he will come home with! It works perfect with his schedule and he will be home every evening to hit the hospital and hang out with me and Darbi.

Best Day Ever Reason #3

Darbi was moved from an oscillator to a regular ventilator! An oscillator is usually used for the really small preemies whose lungs are extremely underdeveloped. It's much more gentle on their lungs and pumps about 600 breaths a minute into their lungs which actually keeps their lungs almost always open. It prevents them from sticking together and becoming more damaged. Now because she is older and her lungs are stronger, she is on a regular ventilator which pumps in breaths just like normal. She can still breathe on her own with this machine but it's there to help when she forgets to breathe... So this means.. I got to hold her FOR REAL today!! Like really really hold her! My nurse said from now on, as long as she can handle it, I can hold her twice a day for about 30 minutes each time. The reason being, her body has a hard time staying warm outside of the isolette. She did SO well while I was holding her, they gave me *bonus* time with her and I held her for an hour... An hour of sweet bliss.. And she loved every minute of it! She did not fuss at all and was absolutely content to just sleep in my arms.. I'll be going back tonight to hold her again. It would be Clint's turn but he had a cold last week and wants to be for sure for sure he has no more sick germs on him. We will be starting skin to skin care as soon as she's for sure better from whatever infection they think she may have.. When we start that, we can hold her for up to 1.5 hours at a time!

Yesterday made the start of this weekend look a little bleak but now... I'm so happy! They weren't kidding when they talk about what a roller coaster ride the NICU is. From a little low to way high is the only way to go! This will probably help her to start growing faster.. I'll be cheering her on from a rocking chair with her in my arms!!

Our first real family photo

Chronic Lung Disease... basically.

About 10 days ago, the doctor's decided to do a culture on Darbi's lungs to see whether the haziness they saw in the x-rays was from an infection (likely pneumonia) or something a bit more serious. The results came back yesterday and she has a condition called BPD - Bronchopulmonary Dysplasia. NOT an infection - which is what we were hoping for. I don't understand all of the details but our nurse told us she will likely have to be on oxygen until she is maybe 3 or 4. From what I was able to read on the internet, it will hopefully get better as she gets older. She's not going to be an Olympic athlete but I wasn't either.. not even close. They have started her on a new treatment where they use Nitric Oxide in her lungs. The machine plugs into the ossilator and is supposed to NOT destroy her lung tissure like the oxygen in the ossilator was doing. Why we didn't do this earlier? I'm not sure exactly. The nurse told me that this is a new thing and isn't used very often but we should be successful in ensuring there is no more damage done to her lungs. It is a 3 week long treatment and after which we will re-evaluate. Clint understands this all much better than I do so he might be posting some corrections.. We can only wait right now and time will tell us the severity of it all. I think it will all turn out okay though..

She had such an awesome week last week and I've been on this high that I'm sure has a lot to do with the special pills the doctor has me on. I'm afraid to go into this week because as much as I want her to have a perfectly uneventful time in the NICU until I can bring her home, I know that she is still going to have ups and downs. I keep thinking that this perfect progress she is making can't last forever.. but then again.. maybe it could. I'm trying really hard to be optimistic. I wake up with a small anxiety attack every morning thinking that today is going to be the day with the bad news... but then I call the nurse and she had a quiet night. SO good. So I keep calling the nurse... and I keep taking the pills.

I'm starting to go back to work this week. Knowing she is so far away is going to be hard. I will go see her tonight but I won't be back until Wednesday night. I hope she's good for her nurses while I'm gone..