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!

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!

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!

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 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?

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