Saturday, February 21, 2009

Everyone's favorite stuff...pictures!


Bumbo fun! She sits up like a big girl...she can rest her head on the back of the Bumbo if she gets tired. She really likes being able to see everything!




This is my newest favorite picture of Bree....She looks like such a big girl with her shoes on! (Thank you Auntie Cindy!)


This what I see about five hundred times a day...Riley saying "UP?" while holding up her arms to me...




The saddest frown face ever....seriously, isn't it?


You know you have a preemie when...you have a list of all of her scheduled feeds and medications...


Riley did not like the ladybug costume. I am such a great mom that I had to make sure to document this moment in case she forgot how she feels about it. (that sounds convincing, right?)

"Kkkkkkkkkkkkk" (smile)

That is Bree's newest development...she will talk with you! If she is awake, and in the mood, she will smile at you and go "kkkkkkkk" and then smile and wiggle because she is so happy with herself. She will then quiet down and stare at you...as soon as you answer with a "kkkkkk" she will wiggle and smile away! The best record we have so far is six times back and forth!

Doctor updates!

GI: She is doing great! She was 8 lbs 9 ounces and 20.5 inches long. We are going up on her Prevacid dose (which is for acid reflux), and down on her Enulose (poop medicine). He was very pleased with her progress...he said if we continue along this trend that she will be a "normal" size gestationally by the time she is 9 months old. This is so far out though that we are concentrating on the here and now. :)

Neurologist: Dr. Teodori was so pleased with Bree'es demeanor, and development (physically and socially) that we get to skip the MRI! She said that there are no outward signs of problems from her brain bleeds so there is no reason to subject her to sedation for the test. She tested her for a variety of small things just to see where she is developmentally and she is right on the spot for a two and half month old. She recommended a Bumbo to us because it will help to develop her neck muscles. So far, Bree seems to like it. We have to pad it with a blanket because she is a little bit small for it, but it works!

Pulmonology: Get ready for some good news! As long as Bree has no apnea spells between now and March 27th we will be done with the monitor!!!! This is exciting, but scary at the same time. (More exciting though...) It will be an adjustment, but it is a step forward. Like we said when she was younger, less tubes and wires is a good thing! Besides that, we are continuing her Pulmicort twice a day until the end of RSV season to help her lungs stay strong. She also got her Synagis shot to help prevent RSV last week again. (she gets it once a month during RSV season for the first two years of life)

Physical Therapist: We mainly did paperwork with Kyla this time, but will begin the real work on Friday....will keep you all posted!

Hope this update helped everyone understand what has been going on and why we have been so hard to get a hold of this last week! Between a sick Riley and crazy dr appts we have had no free time!

Hope this finds everyone happy, healthy and in love with life! (or as Bree would say..."KKkkkkkkk")

"Da-Da! DANCE!"

Little Miss Riley is growing, changing and learning so many new things everyday that it is amazing! Just this morning, while cartoons were on (Mickey Mouse Club House to be exact), she screamed "HOT DOG!" when they started to do the hot dog dance. (For you non-toddler parents, it is a song and dance at the end of every Mickey Mouse Club House show that you do your own special dance to). Riley started dancing and shaking her little booty...she looked over at me, and from experience I started to shake the upper part of my body in rhythm to the music. Poor inexperienced Daddy didn't know any better....and Riley sure let him know! "DA-DA!! DANCE! DA-DA!! DANCE!!!" she chanted until he too started to dance to the rhythm of the music. However, he stopped and once again "DA-DA! DANCE!" It cracked me up!

I have recently gone through and organized all the WONDERFUL! hand me down clothes we have gotten for the girls and I had some left out still. Well Riley literally spent 45 minutes moving them from place to place. It was only ten or so items of clothing, but she would pick them all up, carry them to the coffee table and groan while throwing them onto the table. She would "fuss" with them, pick them up and carry them back to a small table behind our recliner, groan while putting them down, then repeat...over and over. I have no clue where that fascination came from, but it was 45 minutes of pure bliss (apart from the groaning every three minutes)!

I love this stage in Riley's life! She is so adventurous, but cautious at the same time. She has to run for the comfort of my arms whenever unsure, hurt, or even in trouble (even if it's from me!). She is my Riley, and I am her Mama....

Friday, February 20, 2009

Blessed....

We are blessed beyond measure. Without a shadow of a doubt, I give all credit to God. He is the amazing one who knows exactly what our future holds for our family, and is responsible for our present.

Many different times this past week I have been told that we are blessed. We are blessed with an amazing little girl who has defied all odds, and is right on track (even ahead in some areas!) with what she is suppose to be doing according to her adjusted age. Bree is a miracle child. Plain and simple. I do think that every child is a blessing from God, but I do believe that people throw around the word 'miracle' a little too quickly nowadays. However, I think Bree is a miracle child. She has had her heart stop twice, and been revived twice with CPR. How many people can say that? Adam and I joke that we need to change her bedtime prayers:

"Now I prop me up to sleep,
I pray the Lord my soul to keep,
if I should die (and stay dead) before I wake,
I pray the Lord my soul to take...

In Jesus' name we pray....AAAAMEN!"

Ha ha! (We have to prop her up to sleep because of her feeding tube drip that she gets at night) I wonder sometimes if I have a sick sense of humor. But, it is true...

Wednesday, February 18, 2009

A down day

So far today has not been a wonderful day for Riley or myself. Riley woke up with a temp of 99.8 today, her cough is a bit worse, but no throw up so far today! She has been whiney and clingy, which is to be expected with being sick.

I noticed this morning that Bree only had three diapers left so when Riley went down for her morning nap, I decided to run to Walmart, leaving Papa with both napping girls. Well, apparently I "ran" a little too fast....I got a ticket for speeding ten miles over the speed limit. I was going with the flow of traffic and I noticed a police officer with a radar gun. Common practice, I checked my speed and realized that I was going over! I tried to slow down, but he had noticed and pulled my over and cited me. If it had been nine miles over, I would have just gotten a ticket with an amount of money to pay. But since it was ten over, I have to go to court on March 4th. I have to be there from 8am to 4pm...which means Adam will have to try and get the day off. If he cannot, I am going to have to see if one of our friends will watch the girls for me.

So, with Bree's appointment later today I hope that the second part of the day goes better than the first has!

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!