Complications with Grace's surgery

Here is the update from Anneke:

Some complications.... Tried to come off bypass, but pressures were too high. Narrowing of arteries, required patching to thicken up. Putting a hole back in heart to even out pressures, if it doesn't work, they'll take out the conduit and try a shunt. Could be several more hours... Please pray, pray, pray!! We're having a difficult time.

I am scared for them, and for sweet little Grace...please be praying my friends!

Prayers, well wishes, and supporting thoughts welcome!

Our friends Anneke and Felix will be doing much waiting today as little Grace is having her open heart surgery today. This is her second open heart surgery, but this one is a bit more complex than her first. It will start at 1230 and this one will be six hours long and consists of the surgeon opening her heart, and restructuring the inside of it. Her mom, Anneke, put this post up yesterday on facebook:

Grace will have the hole in heart closed, the collateral artery branches snipped, and a cadaver "conduit" placed as her pulmonary artery. She'll be on bypass for the entire procedure. Thanks for the prayers!

I know their family will appreciate any prayers, well wishes and/or supporting thoughts. They have also asked that if you are able to, to please light a candle for Grace today. Here is Grace's 'website' that Anneke tries to keep as updated as time allows: http://graceloren.aboutmybaby.com/

I know that all Bree's prayer warriors will be praying away! :)

P.S. The pictures above were from Grace's baptism in February!

We're BAACCKKKK!

We got back into town on Sunday and have been trying to scramble and get life back in order. Getting back into routine and life is harder than you think! Riley is of course testing all the boundaries again to find out what she can and can't do here at home, and she is learning that sitting in timeout is really not that fun. We are up to three timeouts already today!

Bree is adjusting well and will be starting physical therapy on Thursday with Phoenix Children's. She will be having it every Thursday at ten from now on. I am slowly working on getting all of her other appts in order, which I need to call a few of them back today. You'd think that they would answer their phones, but the two times I have called and left a message I have not gotten a call back. SO...I will continue to bug them and leave messages. :)

During our vacation we were able to get a LOT of work done for Adam's parents. We washed, primed and painted the walls in the living room, hallway and their bedroom. Adam and his brother Jason laid wood floors throughout those areas and then they put new electrical sockets, switches and lights in. Adam even crawled up into the attic and rewired some areas so Mama could have a fan in her living room and lights down her hallway. My sister in law Jenn helped Mama to put up some new curtains in the living room and bedroom. We did a lot more little stuff but too many to name!

Even with all of this we tried to fit in one day with all of my other family members (which worked out not as well as I had hoped, but I had explained to everyone that this trip was for Adam's parents ahead of time) We made it out to my Grandma's house on the farm, and I got some really good pictures. (me and my camera!) Overall, I learned a lot during this trip...about how to remodel a house and many new things about family.

Here's some pictures that I have edited so far:

The tiniest daisy of all

Nicholas (our nephew)

Ya-ya (my stepmom) and Riley!

Grandpa's horse Mercedes

Nana crawling down the hallway with Nicholas and Riley

Nicholas peeking through

Cutie Riley

...and we're off!

Tomorrow morning we are going to leave on a jet plane ...(everybody sing along: Leeeavin on a jet plane...don't know when I 'll be back again)...Actually we do know when we are going to be back. We are going to the good old Evergreen state of Washington from the 11th of July to the 26th. We are flyin home to visit with all of Adam's family (all under the same roof for the first time since our wedding!) and to help out his parents by laying flooring and painting their house for them.

We are going to take some time out to see my family as well and I hope that you will look forward to seeing all of our awesome pictures from our visit...expect to see them in August! Small updates soon to follow.. :)

Decisions and plans...

So after yesterday's crazy news, and emotional out pouring from me, Adam and I have decided a few things. The first of which is that we will be putting the girls into Gymboree classes. Yes,
I know that is one more thing we will have to go to and do, but it is something that WE will be doing as parents to interact with our girls. This is to strengthen our bond with them, and for them to have one hour of our devoted attention a week.

Bree's Gymboree class will be on Fridays at 12. That will be the only thing we will have planned for that day. Friday's will be Bree Day! We will do things that she enjoys, and will, as a family, concentrate on her. This may sound odd to you all, but even though Bree receives a lot of attention right now anyways, it is not for the benefit of fun. It is purely for developmental advancement and trust me, it is not always fun. You should her when she has her developmental therapy...she screams for a good twenty minutes of the forty five minutes of therapy she gets. So, Friday being Bree Day will be a good thing. :)

Saturdays will be Riley Day! Her Gymboree class is at 11 every Saturday. Same arrangement as Bree...we will be doing fun things that Riley likes to do throughout the day. Coloring, singing songs, building with blocks, going to the park, etc etc. Whatever she wants to do (within reason) we will do! She is growing so fast and so much that we do not want to miss a thing. :)

For their Gymboree classes, Adam and I will be switching off. For example, I will go with Bree on Friday and he with Riley on Saturday. The next week he will go with Bree and I will go with Riley. This is so that the girls will learn to play and interact with either parent present. I also think (and I sure many of you will agree!) that sometimes Daddy's are better at letting kids explore and do things that Mommy might not allow because they may seem a bit dangerous to Mommy. I know I struggle with that sometimes. :)

So, we will be limiting our therapies and appointments to Monday through Thursday. I think that this is a choice that may be frustrating to some doctors, but we as a family need the downtime. More specifically, my girls need the down time. Even though Bree has medical issues, that is not all of what our life is about. Life is about loving and appreciating those whom you have around you. Family comes first...no matter what.

It wasn't suppose to be this way....

...but it is what it is. As a parent of a micro preemie I am learning that you can only take so much when it comes to doctors and therapists telling you that your kid is behind, has delays, this and that...before it starts getting to you. I know that they all mean well, and they do intend to help her, but it is quite overwhelming.

Here's the rundown: We went to go be evaluated on her development today. We see AJ Pratt who is with Phoenix Children's. Now this lady knows her stuff! She is very educated and has great connections at PCH so she is going to get Bree the help that she needs.

The help that Bree needs has greatly expanded. Within the hour of our evaluation we rounded ourselves up four referrals for other specialists. First the referrals:

1. Intensive Feeding Therapy - That was not a big surprise to us. She refuses bottles no matter what we do. Every so often she'll comply and do great, but usually it's refusal.

2.Neurologist - We get to go back and see Dr. Teodori for some concerns with her muscle movement. She is very 'jittery' with her movements and while that was okay at 3 months adjusted age, she should have well outgrown it by now. I am sure we will be referred to have an MRI done.

3. Nuerosurgery - Yup, nuerosurgery...Bree's skull plates are not growing together correctly and she has problems with the 'sutures' (where two skull plates meet) that are in her forehead area. She has a ridge that runs down the front of her forehead. This could potentially limit her brain growth so we need to have it looked at and followed. I am sure we'll need an MRI for this as well. (maybe they could just do one and use it for both purposes?)

4. Physical Therapy - I will elaborate more in the next portion of the blog, but again, not a surprise...just another thing to try and squeeze into our schedule.

Now onto the evaluation portion. I showed AJ some pictures on my phone of Bree doing tummy time, and explained how she will not push up on her arms. After some evaluation and play, she explained that Bree has very loose shoulders. She does not have good muscle strength in that area and that is holding her back from doing many things she should be. Because of her poor shoulder muscle strength, she is unable to push herself up when on her tummy, she is unable to play with toys in a certain way when sitting up (it's hard to explain but makes sense), and so on and so on.

In order to understand her 'placement' on the developmental chart one must know her adjusted age. This is counted from her due date (December 19) to today's date. So, as of today, Bree is 28 weeks and 3 days old. Here's how she rates in the following categories:

1. Language: 32 WEEKS!!!! (that's my girl!)
2. Social: 22 weeks
3. Fine Motor: 16 weeks
4. Gross Motor: 14 weeks, 6 days
5. Play: 18 weeks

As you can see she is far behind in many things..which can be worked on but it is disheartening at the same time. What is most disheartening to me is that I feel as though Riley is falling to the side during all of this. There are many appts that aren't okay for her to go to (waiting rooms aren't fun for toddlers) so I leave her with friends who have kids similar in age. When therapists come to the house for Bree, Riley gets to watch cartoons so that she is quiet and out of the way. I feel as though I am not being a good enough Mom to Riley.

Bree requires so much attention and help with everything that I don't know how to get back to playing with Riley before Bree needs something else. I feel that this new schedule we will start when we back from vacation is going to occupy so much time I am not going to have time left for Riley. Adam and I have even thought about putting Riley into day care two days a week just to have time to do all of Bree's appts (and to relieve our friends) but we cannot even do that because RSV season is coming up and we can't risk bringing it into the house and getting Bree sick. So, I don't know where that leaves me...but I will figure it out. I'm going to have to because I have no other choice. It's amazing what you can do when you have no other options.

Sorry to make this post about my frustrations at the moment...but that is what is going on in our lives today...and tomorrow...and the day after. All we can do is take it one day at a time. And to love each other.

Bree is home!

She came home last night around 730 so by the time we got her home she was tired so we did the mad scramble to get two kids into bed, and then we headed that way ourselves. She is doing great and all the nurses were amazed that she rarely cries when you are doing her g tube 'stuff'. She HATES when we are cleaning it, but does okay otherwise. I took some pictures this morning and when I get them edited I will post them. It is weird to see on her, but it's the way it's gotta be. Even the nurses mentioned that her g tube is in an odd placement..it is in the middle of her belly about two inches up from her belly button. Normally it is off to the left side, but I guess her tummy is more towards the center than most people. Once again my kid is not the norm...and i think that is AWESOME!

Surgery Story

For the most part Bree's pre surgery prep went like it should have...except for the part that her surgery started an hour late. Her pediatric surgeon, Dr. Rowe, was late coming from clinic so we were waiting on her. Once we walked her down to the operating room (and handed her off after kisses and loves), Adam and I went to go pass the twenty minutes of surgery time by getting a copy of her medical records. After getting lost and being redirected by a helpful hospital employee, ten minutes later we were at medical records. She started printing out her records and we were standing around waiting for them to finish when the medical records lady informed us that we were on page 30 of 306!!! So, Adam stayed back for the records while I went to go wait for report from Bree's surgeon and doctor.

Dr. Rowe and Dr. Ursea came out and let me know that her surgery went well. They gave me a sheet of paper that had all the specifics of her surgery on it and it even came complete with a picture from the inside of her stomach from the endoscope. It showed her G tube placement from the inside. Which, if you know me and my medical love, I thought it was AWESOME!

About five minutes after that Adam came and joined me as we waited to be call back to the recovery room to see Bree. As we were sitting there a PCT from the NICU walked by and said "Wait, you're Bree's parents, right?" We talked with her for a few minutes as she asked how Bree was doing and what we were doing there. After she walked off (back to the NICU) Adam and I looked at each other and went "Did you know her? Cuz I don't remember her!" We saw so many people in the NICU that it is hard to remember them all. However, we appreciate every single person who have helped us, taken care of Bree, and/or just like us. :)

We finally got called back to recovery where little Bree was sleeping off her sedative from the surgery. She looked pale and whenever she woke up she would fuss in pain. She broke my heart everytime. However, once Adam or I were holding her she was content and happy (and sleepy too). When she was content and snuggled in her Daddy's arms, I left to go pick up Riley from our friends house.

Update on Bree!

She is doing pretty good! In pain and sore...fussy of course, but doing good. Adam is at the hospital with her tonight and I am home with Riley. The news as of right now is that she should be able to come home tomorrow evening. I want to get her out of the hospital as soon as possible so that she doesn't catch anything and get sick.

I am headed to bed to get some much needed sleep!

It's G tube time!

As you all know, Bree has an NG feeding tube. It is the tube that goes in her nose, down her throat and into her tummy. This is because she is unable to drink bottles on her own. We are not sure of the exact cause of why she cannot drink them, but we are sure it is a number of factors. These factors include, but are not limited to: her prematurity itself, she could have some brain damage from her brain bleeds that are affecting her coordination with sucking, or it could just be her personality. Even with weekly speech therapy we are unable to succeed. So, we are moving along with placing a g tube. She will be having g tube placement surgery on Thursday at two. It will be at PCH with Dr. Dorothy Rowe and her GI doctor. Here is a brief overview of what the G-tube surgery or more commonly called a "PEG" (percutaneous endoscopic gastrostomy) will be like: click here!

The sugery will take less than an hour and we will be staying overnight on Thursday for sure. I have heard some people say it is a 3-5 day stay, while the surgeon we have said some kids go home the day after if they are having no problems. Personally, I am going to push to get her out of that hospital as fast as possible before she can catch anything that is in there! I can always call the doctor's from our house if I need some guidance or some answers to questions. We expect Bree to be sore and not feel like herself for a bit but we hope that with rest and a few days she will start feeling better.

This surgery and placement will not change a lot of things for us. We will still offer her a bottle before she has anything 'pumped' into her. Whatever she doesn't finish after twenty minutes of trying with the bottle will be put on her pump and put in. The main changes with this G tube will be getting all that yucky nasty white tape off of her face (!!), and getting the tube out of her throat. I am excited to see what new noises she will be able to make, and if she does better with drinking bottles without a tube in her throat. I think I would...don't you?

I will keep all of you updated on Thursday so all of your positive thoughts, prayers, well wishes, or whatever you do to be thinking and hoping for the best for others is welcomed and appreciated! We love you all and I thank you for taking this journey with us!

Sippy go potty!

So, as of lately Riley has been slightly interested in the potty. So, she goes into the bathroom when we go potty, she sits on her potty at the same time and when we are done doing our deed she will wave goodbye to whatever is in the potty.

That being said, this morning I was getting ready for the day in the front bathroom. I had already gone potty so the toilet lid was up. Riley comes trumping in, in true Riley fashion (running), goes over to the toilet looks in, and throws her sippy in. She triumphantly proclaims "SIPPY GO POTTY! YAY!!!!" while clapping her hands.

I quickly scooped up sippy before she had the chance to flush the toilet and wave goodbye.

P.S. I did explain to her that sippy's don't need to go potty. :)

First time ever!

Stuffy nose and all....little miss Bree was fussin about an hour before her feed was due. It was a very whiny cry that I have never heard before so, on a whim I figured I would try to give her a bottle.




She drank 50 cc's!!!!!!

That is huge for her! She even did her same whiny fussy cry if I would take the bottle out of her mouth. I am sure this is an isolated event (it always is and I have lost hope in her drinking a bottle on her own) but it is still exciting none the less! Woo hoo! Go Bree!

"Ick"

That about sums up the state of our house right now. Every single person is sick with this nasty head cold that Riley got sick with on Thursday. We are all looking to Riley to see how she recovers since she was the first person to get sick but as of right now, she is still sick! Bree and I got the bug on Saturday and Adam came home from work this morning not feeling well. Ay yi yi! I hope we all get better soon so we can get out of this house!

It's the tiny moments in life that matter....

Lately for me, I see small little things that the girls do (more specifically Riley) that I go "oooo! I want to put that on the blog!" but I never get to it because it is hard to work that small thing into a blog post. So, I am going to start doing a blog of the tiny moments that matter.

- This morning Riley is sitting and doing her puzzles. They are wooden puzzles that have pegs you can lift the pieces out with. Just five minutes ago she picked up two pieces, held them on her head, and said "Nooooooooo!!!!!!" (not a nasty attitude no, but one that you would hear in movies in slow motion when something bad happened). She then took them off her head, put them in their places and said "okay".

- Yesterday, for the first time in a while, we ventured out to church. We went to the first church we attend when we moved here, to Radiant Church. We have many friends there that we hadn't seen for a while and we made sure we stopped and said hi to many of them. One of our friends works in the nursery for the 0-9 month old babies and we were standing and visiting with her. While we were doing that, one of the workers was changing a little guy and he was not having it. He was screaming and trying to roll over, and crying his little heart out for anyone who would listen. Riley became really concerned and continuously tried to look in and see the baby and was asking him "Why you saaadddd? Why you saaaddd?" That is the first half 'real' sentence I have heard her say. My sweet girl was concerned for him....

- I thought Bree just smiled all the time. Turns out she just smiles everytime she sees me. Warms my heart to realize that.

- Bree can ALMOST roll from her back to her tummy...but her darn arm gets in the way! It's not for lack of trying tho, she gets so frustrated she turns red in the face from trying.

- Whenever Riley gets in trouble it cracks me up that she calls for the least capable person to help her. "BREE!!!!! BREEEEEEE!!" is called when she is in time out, or being taken to time out or nap time. Sometimes she will reach in the direction of Bree as if she would tag out with Riley if she could reach her.

More tiny moments in life to follow....

For me, happiness is...

...not found in a vacation, a bottle of alcohol, or at a spa. My recent weekend in Vegas has shown me that. I had a good time that was not without some drama, but it is what it is. Overall, I enjoyed the time I had with the ladies that were present to the best of my ability. Don't get me wrong there were some good times:

It's a guitar and a drink! 80 ounces of fun!

Really, neither of these were mine...but it is a good picture!

Thunder from Down Under men were fun!

However, it really re centered me and made me realize how much I love Adam, and that I do take his friendship and companionship for granted. He is truly the person who gets me, who shares many of the same interests as me, and would never put me in an uncomfortable situation. He puts me first in any situation and I am so grateful for that. He also trusts me enough to go watch (and holler at) half naked men dressed up like firemen dancing around to "It's getting hot in here"!!!! I love you baybuh! (thank you for being you!)

Cell phone pictures!

Here is my latest collection of cell phone pictures! Hope you enjoy...

Doesn't Riley look like a 4 year old in this picture? She's growing up WAY too fast!

Bree's grumpy old man impression

Riley is helping Daddy change the air filter

Chillaxin

Encouragin Sister during tummy time...so sweet!

Happy!

This a rare glimpse of the moment known as: "A clean room"

Grumpy old man Bree

This is horrible, but this reminds me of the Hitler Salute. Bree what are you doing?!!

Look at Riley's arm....this melts my heart!

Broken toe. :( I caught my toe on a baby gate as I was walking fast to get to crying Bree.

Chillin on Mama

Happy Memorial Day everyone!

Adam taking pictures of his feet on my phone...

Doesn't this look so sweet? In reality Riley is trying to pry his hand off of her so she can run back to the playground instead of taking a walk with all of us like she was suppose to. Aidan was telling her "Come one Riley, let's go for a walk!"

The above two pictures are from last night. Riley has been having some weird rash on her feet that is causing her pain, and not letting her sleep at times. So, last night I let her watch cartoons in my room, and then after almost falling out of the bed we moved to the living room. Poor baby!

Speech and Eating!

With Bree's new schedule of eating it is easy to see why I feel like we are constantly feeding her, or thinking about feeding her, or preparing to feed her. Her schedule is as follows:

0630 - 15 cc water flush

0700 - 1 tbsp fruit with 2 cc's of canola oil (oil goes down her tube)

0730 - 70 cc's of formula (first 20 minutes try with bottle, whatever is not finished put down her tube at a rate of 15 cc's every 5 minutes)

1000 - 1 tbsp vegetable with 2 cc's of canola oil (oil goes down her tube)

1030 - 70 cc's of formula (first 20 minutes try with bottle, whatever is not finished put down her tube at a rate of 15 cc's every 5 minutes)

1300 - 1 tbsp fruit with 2 cc's of canola oil (oil goes down her tube)

1330 - 70 cc's of formula (first 20 minutes try with bottle, whatever is not finished put down her tube at a rate of 15 cc's every 5 minutes)

1600 - 1 tbsp vegetable with 2 cc's of canola oil (oil goes down her tube)

1630 - 70 cc's of formula (first 20 minutes try with bottle, whatever is not finished put down her tube at a rate of 15 cc's every 5 minutes)

1800 - Start nighttime drip of 29 cc's per hour for ten hours

Now you can see why I feel like I am so busy all the time. This on top of regular naps, baby stuff, and a toddler to chase around makes me feel crazy somedays! However, this is her schedule and so far she is doing great. Her biggest problem is her parents! We forget to do a flush here, and then sometimes she is late on one feed because we are out and about and then all the other ones get delayed. Regardless of our failures, she still smiles at us in her sweet way to let us know that she knows we are doing our best!

With speech therapy we are trying out some new things. Our goal with speech therapy is to try and get her drinkin out of a bottle. Our newest adventure in this is trying out a new bottle. It is traditonally called a Habermann bottle, and is used with kids who have problems sucking out of a bottle. (Click here to see it!) Basically, while she is eating you squeeze the elongated part of the nipple to assist her in getting out the formula. We have tried it a total of three times today. We had luck the first time, but no such luck afterwards. I am hoping it is going to take her a few days to get used to it.

Another new thing we are trying is by playing classic music while she is eating. This music must have a fast tempo so that she can pace herself along with it. So the new men in Bree's life are Bach, Bethoveen, and Mozart. She gets to hear them every three hours for 19.5 minutes at a time (at least that's what itunes tells me!)!

Bree has been showing great strides as of lately, and I hope that she continues to do so. Come to think of it, both of my girls are amazing! I love them with all my heart and more, and I wouldn't change one little thing about them. They do drive me crazy some days (more often than not as of lately) but they can always make me smile with just one little grin from them.

:)

Zoo day!

Riley, Bree and I joined our friends Danielle, Aidan and Ivy at the zoo today! We got there at 8 in the morning, and it was a cool 70 ish degrees. Danielle and I were promptly tired after I pushed the stroller and she pulled her wagon up over the first hill we came to. Every time I go to the zoo I tend to think that I go more for the adults then for the kids. The kids are just happy to be running around (or being pulled around in Ivy's case) than they are looking at the animals!

At the Phoenix zoo they have two water park areas that are great for the kiddos! Riley had fun splashing in the water and even Bree got in on the action! She splashed and splashed with her little feet, it was so cute! We had one scary moment where Riley was right behind me one second, then was gone! Danielle helped me to watch Bree and I ran into the cave area to find Riley and started to panic a bit when she wasn't in there! (there was no where else in the water park area for her to be!!!) However, when I came out of the cave Riley was standing by Danielle, and somehow she had been in the bathrooms that were right by the water area. Silly girl! She gave her mommy a heart attack!

The rest of the zoo trip was fun, and we got lots of 'girl talk' time in for Danielle and I. It is nice to get our of the house every so often! Poor Danielle did get pooped on by a bird when we were resting and having snack.

The other funny part of the zoo trip was at the beginning. They have these people who are employed by the zoo who take your picture when you get in and you can pick up your pictures when you are leaving..for like 5 bucks of course! Well, the guy who was takin our picture (not that we had plans to buy the pictures!) was trying really hard to get all the kids looking at the camera. Since we didn't get the picture I will explain it to you: Danielle's kids are in a red wagon, Aidan is smiling at the camera but is squinting because of the sun, and Ivy has purposefully turned her head in the opposite direction to not be in the picture. My kids were in their usual double stroller and Bree had her arm straght up in the air as if she was saying "Power to the people!" and Riley is leaning forward and scowling at the camera. Ha ha ha ha ha! Gotta love the kids!

On the way home both of the girls napped and it must have been a good day because Bree just ate all of her 1.5 tbsp of food and drank all of her 70 cc's of bottle within a half an hour of feeding time! Good girl!

Where to begin??!

I never like it when I take a long time to update our 'chronicles' as I never know where to begin!
Let's see...I left off on May 18th...we'll separate these according to family members! (I am hoping this makes it easier!)

Me: After much stress and contemplation I have decided that I am taking a break from school until Bree is big enough to have someone else watch her for 3.5 months when I have to do my observation hours and student teaching. Whether this is by going into daycare or for us to hire a nanny I do not know right now, but time will tell. For now I am on a break until August and then I have to finish up my credits for the academic year. This is because of financial aid 'stuff' (I am not the expert on this, that's why I have a financial aid counselor!). After I finish up my credits I am taking at 6 to 9 month break, which I will have to work out with my loan companies.

Nothing much more exciting for me, I just had a cavity filled and an onlay mold taken (It's a cross between a crown and a filling). Right now I have a temporary filling in my tooth and it HURTS! I think I am going to go back into the dentist tomorrow and have them re-do it because I do not think it should be hurting this much. It is suppose to stay in for two weeks while they wait for the onlay to come in...I can't do this for two weeks.

Adam: He is back on the mid shift for his job, which sucks. His hours are as follows: 11pm to 8am he is at work. He come home anywhere from 8-9, and pretty much eats and goes to sleep until 4pm. He gets up, helps entertain the girls during dinner, we put them to bed and then have a few hours until I am ready for bed. This shift is hard on him, as he feels like he doesn't get to help out very much (and I agree!). Besides that he seems to be doing well, and is trying helping me out with his hours. (he is doing dishes as I blog!)

Riley: She is definitely into the terrible two's! What fun, what fun...So this has resulted in many time outs, over many things. I don't know if I had posted about this but we now do timeouts on in the living room. Yup! No more timeouts in the crib like a baby! She sits on the rug now for two minutes and we do the Super Nanny method, which is working great (I reccomend it to everyone!)!

She loves coloring and seems to be mastering some control over her hand with it. She likes to try to color within the lines in some form (more like color something instead of just scribbling). She LOVES the pool, and will request to go in it multiple times a day. That is not possible here as it is already 105 in the afternoons. So, morning pool time is best for us.

We enjoy having play dates with our friends as they help to pass the time, and the kids love the interaction with one another. Riley's usual playdates are (in Riley talk): "Aida" (Aidan) "Ivvy" (Ivy) and "Etheeee" (Ethan). Whenever Bree's therapists knock on the door Riley runs to the door and asks repeatedly "Aida? Ivvy? Ethee???" until I open the door, and then she is baffled by who it is. It is very cute!

And last but not least is.....

Bree: Woo eee, have we had fun with Bree lately. We have changed up many things with her, and have tried out some things we hadn't before. We tried to leave Bree's tube out to see how she would do. We learned many great things from it:

1. She talks a lot more when the tube is out!
2. She pushes herself a lot more with developmental therapy with the tube out!
3. She drinks a little better from a bottle with it out.
4. She eats a lot better with it out... but...
5. She still does not eat or drink enough to meet minimal calorie counts with it out for us to leave it out.

She lasted five days with it out until we had to put it back in due to dehydration. Let's all say it together: "Oh man!" However, at least we gave her the chance and we can never say "Well what if we had tried her with it out?" Now we know.

After this trial period of no tube, Adam and I decided to seek out another dietitian's opinion on Bree. (of course it is not covered by insurance, but we are trying to get them to cover it) We see a nutritionist at PCH that coincides with the GI doctor we see (which we have switched doctors) and I always felt like they never took the time that was needed. I was correct! We went and saw Amy at AM nutrition and her recommendations and calculations amazed me! Here's the rundown:

PCH's plan: (they last saw her when she was 12.5 pounds)
21 ounces of formula a day
710 calories
19 grams of protein!!!!
35 grams of fat

Amy's plan (This is calculated on her weight of 14 pounds)
18 ounces of formula a day
5 ounces of water a day
2 tbsp of pureed fruit a day
2 tbsp of pureed veggie a day
1 tbsp of canola oil a day

this all equals
623 calories
10 grams of protein
33 grams of fat

PCH was pushing her body too hard and too fast with all the calories and the protein they were giving her. I am excited about the changes and how they will affect her.

Here is the not so good news: we are going to look at getting a g tube. Seeing how well she did with that tube out of her nose and throat made us sad knowing that we had to put it back in. Also, after consulting with her speech therapist and Amy the dietitian we have come to the conclusion that if she needs a suction to drink out of a bottle (which she can't coordinate), she is going to need one to drink out of a sippy cup. So, we are going to need to get a g tube for fluid purposes until she can drink out of an open cup. Riley cannot even do that and she is 21 months old. So, we believe this is the best choice for Bree and it will allow her to develop as normally as she can.

Developmentally speaking she is making great strides and I even caught her today trying to roll onto her stomach (from her back), but her arm that she was laying on was stopping her. So I helped her a little (sneaky smile) by fixing her arm. She is talking up a storm at times, and her giggle is very contagious once she gets going. She takes after her sister and has a smile that lights up the room and sticks with you the rest of the day.

All in all, I think our family is doing well. We all have our ups and downs, but we are sticking together! Thanks for reading my monster post (I think this is a record breaker for me!) and I PROMISE to update more often. :)

Quick apologies!

This is going to be a quick post, but as I am sure you all have figured out life has been BUSY!!! Lots of stuff going on with me, and with Bree...and with the family...I will update soon I promise!! PROMISE!!!!









PROMISE!