Wednesday, February 18, 2009

Cell phone pictures

As most of us know (and can relate) our cell phones go everywhere with us! So, what seems to be handy when we want to take a picture of something?? Our cell phones! Here are some pictures that I recently took with my phone (within the last month):




Little Miss Independent...I picked out jeans that morning and gave her the choice of a pink or purple shirt. "Purbow!!" She then proceeded to pick out dress shoes to wear, grabbed a pj top to add to her outfit and snagged her shades to complete her outfit!


Papa was watching Riley and fell asleep in her bouncer...comfy lookin, huh?




This was one of the outfits that we thought Bree would never fit in! (It looked way big compared to her size when she was born)


Look at those neck muscles!


Two sisters fit into one cart! I love Costco!

Daddy's hat!


Seriously?? This warning was on a dry erase board...why?!









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

Tuesday, February 17, 2009

Crazy busy week!

So, my updates this week are going to be few and far between. Today we had Bree's GI appt at 9 am, and her Synagis shot appt was at 1 pm. Adam's Dad aka Papa is here to help us out with these busy times so he was able to watch Riley for me. Of course, Riley threw a raging fit each time Bree and I left for an appt. The second time it was so bad that she threw all of her raviolis on the floor off of her high chair.

Bree was 8 lbs, 9.2 ounces today at her GI appt. We are backing down on her Enulose (poop medicine) and going up on her Prevacid (acid reflux med). Besides that nothing else is new. Her Synagis shot went pretty well, the usual crying and what not with shots and poor little baby pain.

Here's the rest of the week for us:

Wednesday:
Playdate with Aleasha and Ethan at 9 am
Bree's nuerology appt down at Phoenix Children's at 4 pm

Thursday:
Playdate with Iliyah and Nathan in the morning? (possibility)
Bree's pulomonology appt at Phoenix Children's at 130 pm
Adam and I have a meeting with Pastor Steven in the evening

Friday:
Bree's Physcial Therapy that comes to our house at 11am


To top off our crazy week, I just had to take a break from writing this blog to go comfort Riley as I noticed she hasn't been feeling well today. Just a little coughing, disinterest in food, etc. Her crying just didn't sound right so I went to check on her and yup! she had thrown up all over her bed. So, we are going to have a rough week....but we'll make it through! One day at a time.....

Monday, February 16, 2009

Picture post!

Bree's eye exams:
Dr Golub inserts a metal device that holds her eye open, then uses another tool that goes behind her eye to lift it up a little so he can see behind her eye while using a light and his special lens. He also has a headset that has a light on it and special magnifying glasses.






Our family!!!








Thursday, February 12, 2009

But but but???

No matter how much I stutter in disbelief the fact remains the same: Bree outgrew newborn clothes in one week! Since she is feeling better and getting such high calories with her formula she is in super grow mode! She has three outfits that I want her to wear that are newborn and so far she has worn two. I have to get pictures of her in them because Riley has matching outfits of the same! I will post pictures when I get a chance!

Diaper rash of the neck? Yup, Bree has so many little rolls in her neck that even with us wiping it out daily and applying baby powder it has still turned into a stinky, red diaper rash of the neck! Isn't that odd? I couldn't believe it when Dr. Pham told us that yesterday! We have been given prescription strength diaper rash cream and we have to apply it four times a day so hopefully it will help to heal her little rolly polly neck!

At our dr appt yesterday for the girls Bree weighed 8 lbs even (!!!) and Riley was a whopping 24 pounds and 4 ounces. Whew! Bree had a post hospital check up, and we had Dr. Pham check out Riley's eyes. She runs into things quite often. For example, she clips the coffee table, the desk chair and the couches at least 5 to 10 times a day. (which results in falling, crying, etc). What made us worry though has been our recent trips to the zoo. She can't find the elephant if we point it out (or any other animal that is slightly far away). So, we are being referred to our favorite eye doctor, Dr. Golub, to see if Riley needs glasses.

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

Tuesday, February 10, 2009

Home home home home...we are finally home!

WE ARE HOME!!!!! This picture was taken on my phone (sorry for the crappy quality) just before we left. As you can see she was all packed up and ready to go! Right now she is sleeping in her "bassinet/crib" all wrapped up and cozy comfy! I cannot even begin to tell you how excited I am that she is home. On the way out of the hospital I was singing "I'm so excited, and I just can't hide it...!!!" Of course, Adam told me I was a huge dork, but I knew he felt the same way because he was laughing as he was saying it.

HUGE! Thank you to Danielle for watching Riley during all of this so that Adam and I could switch back and forth. Taking on three toddlers by yourself during the day is a feat that deserves a gold medal (or at least some chocolate mousse pie!)!!!

Monday, February 9, 2009

Monday fun...

GOOD NEWS!! Bree had her last eye exam for the next three months! She got the all clear from Dr. Golub today when he came and did her eye exam in her room today. There is no disease present in either eye! I did manage to get some pictures of the exam (which are not for the squeamish) so I will download them tonight when I am at home. She does not have to have another exam until May, and if that one goes well, not until her first birthday. That's exciting!

We were told that with ROP surgery comes the risk of Bree developing cataracts. However, we will take it one exam at a time. We are actually going to look into getting Riley's eyes checked because she seems to have an issue "finding" things when we try to point them out, especially if it is something that is far away....

Speaking of far away, It is so wierd to think of her first birthday. However, we have to remember that technically she will be five months old tomorrow. It just seems so odd because she is developmentally at a two month old. She makes eye contact constantly when awake, she even talks and coos at you. We were told that the talking and cooing is a HUGE developmental step.

Speaking of developing, Bree is 7 pounds, 13 ounces today! That's our big girl...we are going to try and get a consult with the nutritionist to make sure that with this new weight gain she is getting the amount of formula that her body needs to continue to grow efficiently. She changes on a daily basis, it is so fun to watch!

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

Sunday, February 8, 2009

3 and a half months ago...


I know this picture is a little outdated, but I wanted to share it with you all. It is very easy to get caught up in the "bummer" attitude of Bree being back in the hospital, but let's look at where she came from. Just this past October (for Halloween), she was still in the 2 pound category. She has come so far...and I am so proud to be her Mama. She is such a little fighter and I sure that she will overcome this obstacle just as successfully as she has all her other ones! I love you my little Bumble Bree...(thanks to Gina for taking this picture!)


Pictures of Bree in the hospital











Getting stronger!

Bree is doing much better! She now weighs...are you ready? 7 pounds, 10 ounces!! Woo-eee! She is such a big girl...she even has two little rolls on her thighs on each leg. It is very adorable! I will have to find a picture of myself when I was little and post it. Bree is really starting to look like I did when I was a baby. The only difference at this point between Bree and myself is that I was a regular chubby monster! (sorry Mom, but I was!) Bree is even starting to get little streaks of gold/brown in her gray blue eyes so I am hopeful that she will end up with hazel eyes and look even more like her Mama!

Bree's cough sounds so much more loose. She doesn't seem to have to cough as hard when she does cough, and she is being more awake for longer periods of time. She did last about 18 hours without her oxygen, but needed to have it put back on this afternoon. So, we will try again in a little bit. She is slowly getting stronger and it is exciting to see her healing. Thank you for all of your prayers and please continue to pray for her, and for our family. Hopefully we can go home in this coming week!

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

Friday, February 6, 2009

Hospital life and unpleasant situations

I am so tired of the hospital life. I am tired of the lazy people, the lack of caring in those people, and just the overall situation with having to wait on other people to even feed Bree. It is posted on her board that she eats at 8, 11, 2, and 5. It even says it in her chart, and daily care instructions that the nurses write on their little piece of paper. So, why is it that it is nine o'clock and I just got her feed started on her pump??!!!! I called at 5 till 8 to get her formula and the nurse comes prancing in at 5 after. Even after I told her that Bree needed to eat she proceeded to do her exam on her. Finally at 8:20 she went and got her a bottle of formula. I needed the syringe and tubing to hook it up to her feeding pump so she went and grabbed a sealed package that I thought contained what I needed and just dropped it on the table and walked out of the room. I have NEVER had a nurse not hook up her feed. Good thing I know how to do it.

Lo and behold the package contained the wrong syringe so with a upset wiggly and hungry baby I called for my nurse to come and bring me the right stuff. All the while, a nurse is in the other part of the room taking care of my neighbor. I called for her at 8:25. AT 8:50 (!!!!!!) she comes in and goes "Oh! I totally thought that you were gavage feeding her." Seriously? I asked for a syringe and tubing to hook up to the pump...that's not GAVAGE feeding her!!! So, my child was fed an hour late, which now screws up all her other feedings. I never thought that I would be the obsessive parent about their child being kept to their schedule, but I am now. This is ridiculous.

This is not the only situation we have had. I do not want to paint PCH in a bad light, but the last two weeks have noot been good. I asked for a swing for Bree last week and the one that was brought to me had dried poop all on the seat and on the edge of it. That's not sanitary or right in any way. Let alone the fact that it wasn't even her poop!

Once, when Adam was trying to calm Bree down during a crying fit her apnea monitor sounded an alarm that her heartrate was too high. There was only one other time that it has gone off and when that happened we had four people run into the room. This alarm only goes off when there is a major problem so the sound of that alarm should strike fear in the hearts of the parents and of the nurses. When it went off with Adam, no one came in. It went off for TEN seconds! He had to call the nurse to let her know. That is unacceptable. What if we had been down getting lunch and it had been her alarm to say she wasn't breathing? No one would have come in, and she could have died or suffered serious injury to herself. Unacceptable.

Twice now, we have had PCT's (also known as CNA's) put Bree BACK into clothes and blankets that she had pooped all over. I am at a loss for why they would even think about doing that. Just because she is a baby and can't speak for herself? Would you put clothes back on that you pooped and/or peed on? Both of these incidences have happened at night when Adam or I were sleeping. After Adam confronted one of the PCT's about the most recent incident, her excuse was that it was dark and she couldn't see that Bree's clothes had gotten dirty. Never mind the fact that all the night workers use little flashlights all the time when it is dark.

I have talked with Lisa, the clinical supervisor for the third floor about all of these incidences except for the one this morning. She was very polite, and seemed genuinely concerned about the issues I brought to her attention. She apologized for each one and said that she would talk to the necessary people regarding the incidences. I believe her, but why do all these things continue to happen? I understand that there are a lot of people involved with her care and it only takes one person to set a bad impression. However, we have had too many incidences that are not acceptable for anyone.

I believe that any parent would agree with me.

TGIF!

Friday, friday....Bree had a bit of a rough night. Just general fussiness, and a stuffy nose that needed a lot of suctioning. She has not had a fever for a few days (YAY!), and she is sounding much more loose when she coughs. The fact that it is more loose is great because it means that her body is healing itself. However, since it is looser she requires more suctioning, which increases the swelling in her nose. It's a double edged sword type of position...but any progress is good progress.

She did not gain any weight today, which is the first time since being in the hospital. She held steady today at 7 pounds, 6 ounces. She is ALMOST the weight that Riley was when she was born...(Riley was 7 pounds, 7 ounces). All we can do is take it one step at a time...

Hope this finds you happy healthy and in love with life!

Change of plans!

Adam and I decided on a change of plans yesterday for celebrating our anniversary. I didn't see the point in driving my stepmom to the hospital, then driving back home to have lunch, then driving all the way to the hospital again. (it's a 45 minute drive one way) So, thanks to Pat and Danielle giving us some free zoo tickets, we spent three hours at the zoo with Riley. The zoo is only ten minutes from the hospital so it worked perfect! There's nothing we love more than to see Riley laughing, running and learning! There was no better way to spend our anniversary!! For without our marriage, we would not have had our wonderful beautiful little girls! (Big thanks to Grammie for watching Bree for us)


Happy three year anniversary to us!

Monkey Riley


Eating a sucker...she loved it and did great with it! (Very little mess!)


"WOW!" She was looking at a boa constrictor...which is NOT a future pet in our house...








This statue scared the crap out of me...it was hidden back around a corner and I thought it was real when we walked around the corner...Adam found it was hilarious! (It's okay I got him back, I scared him with a hose that was laying on the ground...he thought it was a snake!)




So proud to be running around, free of the stroller!

Thursday, February 5, 2009

Early Morning Update!

Adam informed me this morning that Bree had a rough night. She pooped through her clothes again...diarrhea poop. :( She also pulled her nasal cannula out of her nose, which caused her oxygen saturation to drop considerably and cause her oximeter to alarm. Once the nurses came in and fixed her oxygen (this was in the middle of the night) it took her over five minutes to recover her oxygen saturation above ninety percent.

Today is Adam and my wedding anniversary, so my step mom is going to stay at the hospital with Bree today while Adam, Riley and I go out to lunch at the new Tiburion Aquarium Resturant that is by our house. I am hoping that we will have a good time!

Wednesday, February 4, 2009

Going... on the go!

Tonight I am home with Riley and Mindy while Adam is at the hospital with Bree. As I was getting Riley ready for bed, I was undressing her in the living room to change her diaper and get into jammies. Well, I had taken off her socks, pants and diaper when she wiggled, got up and ran away. (This is a little game that as of recently she and I have started to play. She runs to the back of the couch to hide and I crawl around and "scare" her, she screams and laughs, and I grab her and she finishes getting dressed.) Well, she ran away so I started by going "Riley???Where's my Riley??" and I crawled over to the back of the couch, peeked out and said "BOO!!" The usual screeching and laughter did not commence. All I got was "Uh-oh". (me) "What's Uh-oh?" (Riley)"Uh-oh." So I went to go scoop her up and make it fun again when I noticed a small little puddle, then another, and another...apparently she was going...on the go.

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

Hump day!

Happy Hump Day everyone!

With Bree sleeping peacefully in her bed, I figure I would do an update for everyone out there in "internet land". Ha ha! I have to admit I have been a bit of a slacker this morning. I found this cheesy game on our computer called "Alabama Smith and the escape from Pompeii" and I got sucked into it. I have been playing it off and on since 730 this morning!!!!I just completed the whole game without even exiting out of it....I NEVER sit and do things like that, so it was nice for a change.

Bree update: If it's not one thing, it's another! Her lungs sound clearer, but she is running a tempature today. If that does not go away within twenty four hours they need to test her urine and her blood to screen for meningitis. Since her immune system is compromised from being sick there is a possibility she may have contracted it while being here. Ugh...I PRAY that that is not the case!

Bree also coughed hard enough that she threw up this morning (while on my shoulder)...poor kiddo. She is breathing harder today from the swelling in her nose and her little head bobs everytime she breathes, in additon to the retractions she is having. (Retractions are when she is pushing her little belly in and out to help her breathe and you can see her ribs when she pulls in..or retracts)

Our littlest monster did get a bath today, so she smells much better right now! She was starting to smell a little on the ripe side from all the sweating, and just general laying in bed. I know that I always feel better after a bath, so I hope it did the same to her.

A few people have asked me if Bree had gotten her Synagis shot. She has gotten one dose already and is due for her second one on February 17th. She qualifies for it automatically because of her super duper low birth weight and early delivery.

Adam is on his way here to relieve me, and he is going to stay the night here with Bree tonight. He was able to take the 10-day leave reg that the Air Force has, but he mentioned he thinks this is the last time they will let him use that reg for quite a while. (as if we use it excessively because we think it is fun to have our child in the hospital!) I am looking forward to being at home with Mindy and Riley tonight...I miss my "bub-bulllll" loving toddler! (Her favorite new word and thing are bubbles...)

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

Tuesday, February 3, 2009

Quick update!

Mindy aka "Grammie" is here...and just in time too! With Bree getting worse they are starting a new method of treating her RSV. She now gets Pulmocort (I think an inhaled steriod??) every other time with her breathing treatments. She is also receiving an oral steriod. The nurse told us that the steriod will help to reduce the swelling and inflammation in her lungs. It will not "cure" her RSV, but will make it easier for her to breathe and for her body to start to heal itself.

I hope and I pray that this works! I am gettin Bree all snuggled in her bed and comfy as she has been up since four thirty, which is a while for her. She is not having it though, she is just being wiggly, fussy, and doesn't seem to know what she wants. My poor love...I hope that this is not a prediction of what our night is going to be like....

Wish me luck!

Tuesday!

Seven pounds and four ounces!! That is how much Bree weighed today. She is doing okay, Adam stayed with her overnight while I went home with Riley. The doctor did say today that her lungs are beginning to sound congested (NOO!). We were hoping that it would just stay up in her sinuses because her lungs are so premature that they can't handle much. Her lungs are at a disadvantage because of two reasons: 1. just from being premature they weren't fully developed to begin with, and 2. being ventilated as long as she was (1.5 months) made her lungs have some scarring, which leads to compromised lung function. Besides that, not much has changed with Bree. She sleeps almost constantly, waking up for ten minutes or so when we change her, but that's it. Let's all hope and pray that it is a healing sleep...

Last night, Riley and I had a few errands to run, then went home to play and then after Riley went to sleep I cleaned. Our house was a disaster zone! I did four loads of laundry (wash, dry, fold, and put away), swept, picked up toys, took out garbage and recycling, did dishes, and cleaned out both of our cars. Unfortunately, there is still a couple things left to do. Thankfully (!!!) my stepmom is flying in today to help us out with Riley and all this stuff we have going on right now. She will be here until Saturday evening so that should give us enough time to make it close to when Bree will be coming home, hopefully. Riley will love seeing her...last time she saw her Grammie she took to her right away!

With Bree being sick the past two weekends I haven't been able to work (I only work on Sundays) so I am not getting paid, which we count on that little amount of money. Riley still can't go to work with me, because we don't need her getting sick since you can get RSV more than once in a year. (She would have to be in the nursery around other kids if she went with me) The last thing we need is revolving hospital visits...so hopefully this will resolve soon and I can get back to work.

Please pray for Bree's healing of RSV. Pray for easement of her pain and suffering, our peace of mind, and the strength of our family to withstand these trying times. Thank you so much!

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

Monday, February 2, 2009

Monday monday...not a fun day.

Bree is not doing so hot today. Her nose is swelling on the inside from all the suctioning, which means they can't suction as often as she needs. So, she kinda has to suffer through it and she coughs hard about every three minutes now. She is so tired, and it breaks my heart to see her struggling to breathe. However, all we can do is watch her and be here for her to comfort her.

RSV does not respond to antibiotics or any other type of medicine so all they can do is supportive care. Suctioning (when her little nose allows it), , breathing treatments, and fluids if she needs them. Luckily, she has her feeding tube so we do not need to give her fluids. Most kids end up needing the fluids because they have a poor appetite and aren't able to suck on a bottle from all the congestion, which then leads to dehydration. (hence the needing fluids)

Someone just brought Bree in a mobile for her bed, which plays music for her. It does not spin, but she will love the music whenever she wakes up. She is so tuckered out that all she is doing is sleeping and coughing. Maybe subconciously she can hear the music....we can hope, right?

Sunday, February 1, 2009

Info on RSV

Follow this link to find out more about RSV: http://www.cdc.gov/RSV/

Our day at the zoo...in pictures!

On Saturday we went to the zoo with Pat, Danielle, Aidan and Ivy...we had a blast! We plan on getting a membership to the zoo one way or another so that we can enjoy all this fun as much as we want to!






Just call him Farmer Aidan!


Riley DID NOT like the petting zoo...she cried the whole time!



Feed me Mama, I am a baby bird!


















I am a little angel..do you like my halo?















When it rains, it pours...



Three letters: RSV.
Seriously, Bree has RSV and we have been admitted to Phoenix Children's Hospital. Now we are in room 302, bed B. At least we keep getting bed B, because those are the beds that are by the windows. I prefer to see the sunshine, and to let Bree see it as well. It lifts my mood. :)
Last night Bree slept on Adam in the recliner while I slept on the couch. At 3 in the morning we switched and I held Bree while Adam slept. From 430 to 530 in the morning Bree had three apnea episodes where her monitor alarm went off. Now, mind you, she has to not breathe for 20 seconds for it to go off. So, after a breathing treatment for Bree, quick breakfast for Riley, and a short call into work for me, we headed off to the hospital. The rest, is history! We have been told that the shortest amount of time we could be here would be a week....
Bree is having a hard time with breathing, she is having retractions (pulling and pushing out her tummy while breathing), coughing, just yuckiness! So, I am here tonight...Adam has PT in the morning while our friend Danielle watches Riley for the day. I will go pick up Riley tomorrow night and stay the night at home. I will drop Riley off with Danielle in the morning, spend the day at the hospital, and Adam will go pick up Riley and so on and so on until Bree gets to go home. Since we have a child in the hospital, the military gives Adam ten days off for free (including weekends). This is a HUGE help!! I am reaching my limit on stress so to just have someone here with me will help.
Hope this finds everyone happy, healthy, and in love with life