Good news, Bad news

The good news is that our first full day home as a whole family was spent with friends at the Phoenix Zoo. We had a great time! I will post pictures when I get to them (probably in a few days). We learned that Riley is a very independent little girl, wanting to run everywhere herself. She also DOES NOT like the goats in the petting zoo. (Daddy was very proud as he hates petting zoos...they are too dirty for him!)

The bad news is that on Friday night Bree started this weird coughing thing. Neither of us slept very much because every twenty minutes it sounded like she had something go down the wrong tube and she was trying to cough it up. Up until this evening we thought it was just from her acid reflux. However, this evening it started to sound very tight and after a quick listen to her lungs with a stethoscope (and hearing crackling in her lower left lung) I made a call to the on call doctor for our pediatrician. After a quick talk with Dr. Malik, she prescribed some albuetrol treatments with the nebulizer. We are suppose to give them every four hours, so we gave one at 6, and will continue at 10, 2, and 6.

If Bree does not get better, or get relief with these treatments we will be taking her back into the ER at PCH.

Some more bad news is that Riley is cutting her first molar and is having a hard time of it. We have kept her "tylenoled" up,but everytime I get a chance to peek in her mouth that poor little gum is swollen and bleeding with a bit of tooth poking through.

Please pray for Bree's healing of her lungs so that she does not get any worse, for Riley's easement of pain, and for our sanity and clarity of mind so that we can both be there for our girls as much as possible.

Hop this finds everyone happy, healthy, and in love with life!

Home!!!

Home home home! We are home! We got sent home last night at 545, and we were home around 7. We were sent home without oxygen, and with a feeding tube. Our friend Danielle watched Riley for the night and I went and picked her up this morning with Bree. It is crazy how much I missed that smiley, whiny, beautiful little girl! You could tell that she missed me, she wouldn't let me even put her down once I picked her up for a hello hug! :)

Today has been full of hugs, playing outside, and Riley saying hi and giving kisses to her sister. :)

Thursday, thursday, thursday!

"Good morning, good morning, the sun says 'Hello!' ...Today is a new day...let's all come and play!... Good morning, good morning, good morning TO YOU!" I was being silly and singing this to Bree this morning and this is the response that I got! At the end ("TO YOU!") I would touch her little nose with my finger and she would break out in a smile. Isn't it the best? She is so cute...however, I am a bit biased.

So good news and bad news this morning. Bree did gain weight today. She is now 3.17 kg, which is 6 pounds 15.8 ounces. ALMOST seven pounds! However, she did require a suppository last night so we are up in the air if we are going home today. Normally I have seen at least two doctors by now, but no one has come by so I am still waiting in our little half of a room watching Regis and Kelly while little monster naps in the bouncer.

I will update when I get news of anything new!

GO CARDS!

The Cardinals football team donated "Go Cards!" cupcakes to the Phoenix Children's Hospital so one was brought to my room. Guess what kind they were?? You guessed it! RED VELVET! So cool!!

Wednesday Update!

Bree had a weight gain of .02 kg (now 3.08 kg), which translates out to 6 lbs 12 ounces! So tomorrow if there is a positive weight gain we will be going home. She has had two normal poops all on her own two days in a row so we are waiting for today's poop to explode out of her tiny little body. I have never been so happy to clean up a nasty explosive poop in my life!

Changes, changes, changes! We have changed rooms in the hospital. We are now in 315B because all of Bree's blood tests finally came back as good and clear. So, she is not contagious! Another change is that we got doctor orders from our pulmonologist to try Bree without oxygen. So she is sleeping right now with a heart rate of 135 and her oxygen saturation of 95%!!!! WOO HOO! So, it looks like we will be going home without oxygen. I cannot tell you how excited I am about that.

(Doesn't her little face look so beautiful without oxygen??)
Once again I am one very VERY proud Mama!

Weight issues

Bree is once again at a standstill with her weight. She did not gain any weight yesterday, which she should have. The GI doctor and the nutritionist consulted with each other and they upped her feeds to 55 cc's every three hours. So, hopefully she will gain some weight tomorrow...I will update as soon as I can in the morning!

Acid Reflux

Bree had a rough night, and a rough day today. This is the first time she is resting comfortably since she woke up this morning. She had just been fussy from 600 to 900 last night. Stiffening her body while she cries, screaming and flailing...you name it. The same thing happened this morning and afternoon. At time, she would go to sleep for about three minutes at times, but would wake right back up and go at it.

The GI doctor came in about 1130 and took one look at her and said "Well, I think it's time to bump up her Prevacid because it looks like her acid reflux is bothering her a lot." At the same time the nurse and I said "She's not on anything!" To that, he replied "I think it is time to start some..." I was told that this medication is one that needs to build up in her system for it to work most effectively. However, fifteen minutes after her dose she started drifting to sleep and you could tell that she got much needed relief.

On again, off again

Sooooo...Bree is back on her oxygen. The main doctor on staff here did not feel comfortable taking her off of the oxygen (even though she was doing great!) because she needs to use her energy for growing and not putting extra effort into breathing. I asked if we could have pulmonology called in for a consult on her since she already sees them and she is here and the answer I got was this : "I do not want to call them for a consult because it just creates a lot of paperwork for them."

HELLOOOO???!!!! Isn't that what doctors are suppose to do? If they aren't sure about a situation, or if it is not their area of expertise, aren't they suppose to consult with colleagues who are more experienced in what ever it is they are looking at? So, tomorrow morning, I am walking over to pulmonology and requesting that they come and see her. They will probably want to do a sleep study, which if we can do that in the hospital, that's great!

I agree that she needs to be using her energy as efficiently as possible, but I do not want her on oxygen if she does not need it.

Family update!

Okay, okay, Bree first! I know you are all secretly dying to know how she is doing. She was at least smiling and wiggling this morning when our old NICU nurse (and friend) came by to visit. Jo-Lynn absolutely is in LOVE with Bree and Bree loves her too...you can tell by all the smiles she gives her.

Bree's feeds are up to 50 cc's every three and she is doing pretty well with that. The speech pathologist came up this morning and watched her eat, then had me try a few different things that will help her to eat more efficiently and not waste her precious energy. Also, the GI doctor came by and we are now waiting for her to poop on her own. He is thinking that maybe there was a partial blockage and with her diarrhea issues she had been having, that it may have flushed it out. If she is still not able to go on her own, we are going to proceed with some tests.

Riley is hanging out with our friend Danielle and her kids Aidan and Ivy right now. Adam was not able to take work off this week, so we are lucky to have friends willing to help us out. I am sure that Riley is running around and playing good and hard as I am typing! Danielle already told me that every time a jet flies over their house Riley says "Uh-oh!". Silly girl!

Adam has a BUSY week! Monday, Tuesday, and Wednesday he has a class he has to go to. Thursday he has a meeting with the commander of his squadron because he failed his PT test, and Friday he has to go with his jet to depo...(don't ask what that is because I can't remember right now!) On top of that he is taking care of Riley himself this week. Hopefully, he is able to manage a-okay.

As for me, I am hanging in here. It is actually not that bad. Bree still sleeps a TON so I am able to run down to the cafeteria and grab food while she is sleeping. Once she is down for the night (after her 5 o'clock feeding) I meet up with our friend Anneke who is staying at the Ronald McDonald House here on campus. We share dinner together, and I am able to take a shower and freshen up a little bit before heading back to Bree's room to relax and watch a movie. Don't get me wrong, I miss Riley terribly, but it is for Bree's well-being that we are here.

As a family, we may be miles apart...but we still love (and miss!) each other in our hearts!

Hope this finds everyone happy, healthy and in love with life!

Trial Run

Right now, my sweet Bree is resting. She is fast asleep, with just her NG tube! That's right...NO OXYGEN! We are trying it out to see how she will do. She has been off of it for about two hours now and is at 94% with a heartrate of 135. She is sleeping so she is allowed to let her oxygen saturations drift a little bit. She can go down to 90% with no worries, but she has only been drifting down to 93% so far. The real test is how long she can maintain this. However, this is the longest she has ever gone so I am proud of her!

It should be illegal to be this proud of a child.

Picture Post!

Some of these pictures are from Bree's Christmas Eve dedication all the way to her hospital stay...this first picture was taken less than half an hour ago. She is still in this same position sleeping away. The sunglasses that Riley is wearing were given to her by Anneke. Riley LOVES them! I thought she would be tearing them off, but she even asks for them when in the car. I love my girls and my wonderful, understanding, and silly husband! Without his support, and sly ways to make me laugh, I would go crazy during these stressful times....thank you for being you Babe!

Hope this finds everyone happy, healthy, and in love with life!

Another day, same stuff

So we are still in the hospital with Bree. No fever today! They said that they don't count it as a fever until it reaches 100.4. That seems a little odd to me, but they know what they are doing!

Bree recieved her feeding tube yesterday and is getting 60cc's every three hours (at 8, 11, 2, and 5 around the clock). During the day, Bree gets to try eating from the bottle for 15 minutes then whatever she doesn't eat gets put down the tube. At night she just gets her feeds through her tube so that she is able to just sleep and get her rest.

Right now she is resting and Dr. Elliot just came into the room so I will update a little later in the day.

Hope this finds everyone happy, healthy, and in love with life!