Braxton and Xander

caden

2012-01-03T09:42:00.001-08:00

no message

Can you hear me!?

2011-09-17T07:03:00.000-07:00

Yesterday I (with the help of my mom) took the boys to their 6 week hearing aid check up. At this appt. the audiologist did some sound field tests and it appears that their hearing is a bit worse than the tests done previously....by about 40 db. Xander is 50/60 db (left ear is worse). Braxton is 45/50 db. With their hearing aids, they are hearing at about 25 db. Normal hearing is about 0-25.

The boys did just have a cold, so that might have played a role in their testing. But because they havn't really created any words yet, I am pretty certain they aren't hearing well. They will say, "buh" for ball. Or "bu" for book. That's a start. It's typical with hard of hearing kids to omit the ending or beginning sounds of words.

The PIP class they are in at CSDR has been awesome. The boys are thriving and doing great. They are showing a real interest in learning through ASL; fully engaged during story time, etc. I love seeing it. I am finally at the point where I can just drop them off, I don't have to sit with them. My little boys are growing up. ;)

A letter to my birthday boys

2011-08-18T06:31:00.000-07:00

Dear Braxton and Xander,

Two years ago, today, I met you through a glass. You were both soo very tiny, so fragile, fighting to take a breathe. Your eyes were fused shut, your skin was paper thin, heat lamps over your bed, your lungs didn't work, you had a hole near your heart, a big tube down your throat, wires in your belly button, machines all around you, you were pumped with medicine to keep your heart going, poked hourly with iv's and needles. You little bodies have been zapped with more radiation in the first few weeks of life than I have had in my lifetime.

Your friends parents will tell them stories about the first time they crawled or the first time they walked. You will hear more about the first time I got to lay a finger on you (literally a finger)....you were already days old. or hold you....you were already a month old. I will tell you about the first time I heard you cry...you were already about 2 months old. I will tell you about the first time you drank milk/had a bottle....you were already 3 months old. Our journey has been unlike any other. I will definitely talk about the first time you got to come home....almost 5 months after you were born. The milestones you have made have made me the proudest, happiest mom in the world. You both continue to thrive and make me so proud.

You boys have taught me the importance of trusting God and through you, I have learned even more that prayer is for real and so powerful. I have learned that without God this journey could have and WOULD have looked very different. You boys are a walking testimony of what God can do when we ask and believe. I pray that God continues to use you in big ways.

August 18, 2009 I met two very fragile little boys who were barely alive. Today I have the privledge of seeing two strong, thriving, healthy, smart, fun loving, sweet little boys that I love so much!

Happy Birthday Braxton and Xander!

Love always,
"momma"

A Baby Story

2011-08-11T06:16:00.000-07:00

It's crazy to me, to think that before the twins I loved watching the TLC shows "Baby story, " "Bring home Baby, " etc. All the new mommy/pregnancy shows were entertaining to me. Even brought tears (happy tears) to my eyes.
After the twins, is it not only hard to watch those shows, but to even have a pregnancy convo with a new mommy, or even talk story about pregnancies is difficult. I understand this is "normal"....but TWO YEARS later!?

My boys birthday is around the corner. The little guys will be TWO! It's blowing my mind....so much has happened in these last two years, making time move so quickly. But at the same time, there's parts of this journey that is moving SO incredibly, painfully slow. Like the grieving/healing from the traumatic pregnancy/birthing experience.

I think about it often....I think about how I got robbed from really feeling my boys play and fight inside me. I will never feel another baby inside of me (unless another miracle happens), so to "go out like that" is paralyzing really.

It's so easy to stay in maintenance mode....surviving the everyday antics of raising three boys, taking care of a house, a husband, etc., that you don't leave room to deal with hurt, sorrow, despair, bitterness, etc that's stored up in your heart/mind. With every week or month that passes that you haven't dealt with the junk in your heart, it's cause for later disappointment and a lifetime of struggle. I'm not really about that.... or at least that's not my goal.

I don't write this for sympathy...i just realize I haven't been true to myself lately. There's a lot stored up in this heart of mine. A lot! And if you are like me....when birthdays or holidays roll around, that junk starts trickling out. I figure, for my families sake and my friends around me, I better start dealing with some stuff before it gets ugly.

So, here's to.....transparency, vulnerability, and healing.

the latest

2011-08-04T04:56:00.000-07:00

I realize I haven't given you the latest on what's happening in the Carmona house....Allow me to briefly update you.

Caden:
We are finally spending a lot of energy potty training, since he will start preschool at the end of the month. He is all registered to go to the local private preschool near our home. For months now we "dabbled" with the whole potty training thing. But since he MUST be trained for school we are doing mostly underwear. he's doing pretty good considering all the distractions he (and I) have.

He will get hearing aids soon I hope...his speech production seems to be getting more muffled. Doctor checked him out this week and his ears look good. I thought perhaps it was fluid build up from swimming. I think the aids will help him tremendously.

Braxton:
Mr. braxton is becoming more and more independent. He wants to feed himself, walk by himself, etc. etc. He is progressing well, developmentally. He is still about 3 months or so behind his brother, but the gap is slowly closing.

He now signs
*bath
*hi/bye
*more
*mom/dad
*finish
*plane

I hear him voice "mama" too :)
He uses his leg braces still....I need to be sure to put them on him the moment he gets up--but who wants to wear shoes all the time. Sucks, but if it's going to help him stop toe walking then so be it. I'm starting to think there's more going on. I'm thinking there something going on with his hip, because he will often hold his hip when he walks. We are STILL waiting to see the physical therapist....with some health insurance changes, things have been a bit in shambles. Hoping by the end of next week we can get it all figured out.

Xander:
Both xander and braxton are very stubborn....hard headed little boys. This is always a bad thing....i think it has helped xander learn sign a lot quicker. he is determined to get what he wants and we try not to give in unless he signs it. Before (2 days ago before) he would scream and yank on us to pick him up. now he quietly points up and looks at us. It's cute...and helps with the noise pollution ;) We are working on "up please". He knows tons of signs...however only does 1/2 word utterances. He and Braxton will be going to CSDR again this fall to the DHH parent infant program. I know they will make huge strides in language this year. Xander, too, says, "mama" at times.
Xander has a hernia in his private area...so we are going to a specialist to get that checked out. HE often pushes down there and one doctor said "its just a guy thing". we could tell he was uncomfortable....and it turns out it wasn't "just a guy thing!"

In a couple weeks the twins have an appt at the high risk clinic at Loma Linda, where they will have more extensive developmental/physical testing done. They turn 2 AUG. 18th!! Crazy... at age 2 a lot of things change. They don't adjust their age anymore...the gaps that are present are now looked at differently. Not just a "preemie" thing. So we'll see what they have to say. Of course I am already thinking about this appt, but trying to remember that what ever they have to say is not written in blood. They've been wrong before! :)

Mom:
I will be teaching another ASL class this fall at CBU. I'm looking fwd to it, as it gives me a little adult time...a sense of balance from the everyday tasks of being a stay at home mom. Which....as some of you know, can be daunting at times.

Dad:
Phil continues to work hard at his business, RISE interpreting. I'm very proud of him--it has to be a hard task being a dad/husband; trying to balance work, time with wifey, kids, etc. He's doing it... One of my favorite sights is seeing all three boys tackle Phil to the ground and hearing all 4 of them laughing out loud.

till next time....

Santa Ana Zoo

2011-07-29T07:24:00.000-07:00

My mom and I took the boys to a small zoo yesterday....I'm glad we chose this one as our first attempt vs. going to the famous San Diego zoo. The boys did well, but we only lasted 2.5 hours. They wanted to walk, grab, run, look, etc. We managed to arrive happy and leave happy. I think we can say mission accomplished.

A few pics from the day's fun....

signing "all done" :)

just arriving....Let the fun begin

On a fake jeep

Xander loved the goats...braxton did NOT

Xander was scared at first but cried when we had to get off...

Thank you mom for a fun day and ALL your help!

Oregon: Cremation Vacation

2011-07-29T06:53:00.000-07:00

Yes..I said "cremation vacation". This was the token phrase of the week, as we all flew to the Oregon Coast to say our last good byes to my grandma. Her favorite beach was cannon beach...she loved Haystack rock. So what better place to gather for a memorial. It was perfect.

This was also the first trip the 5 of us went on. PHil and I, along with my mom, step dad and step brother trucked around the airport with 3 toddlers, 3 car seats, 5 carry ons, a double stroller, and more. (imagine getting all that through security....) It was intense...to say the least. Getting on the plane, I thought was the hard part; that is until we were IN the plane. It was a lot of work. But well worth it.... Spending a week with my family (32 of us) was awesome! The boys ate it up, as they got tons of attention.

Below are a few pictures to depict the adventure:

Braxton and GG waiting at the airport

More waiting at the airport...

Our condo in Seaside, Oregon (he has a little michael jackson in him)

Xander :)

The condo wasn't baby proofed...this was our attempt. They were up to something before I caught them :)

Holding baby Gus for the first time...my boys LOVE babies

Uncle Andrew walking Xander around the airport. He was awesome help!

Grandma d (my aunt) helping my mom give the boys a bath....what a task.

Braxton and Xander....can't tell me they are not Identical twins!

Caden and Agustus again...he's in love.

Cannon beach...Haystack rock is behind them...

Just hanging out--figuring out the days plans.

Brotherly love on the beach

Notice my hand.... funny.

Braxton and i...wait...is that braxton. Yes, confirmed by looking at another pic. :)

Caden Thomas

What started out fun, doesn't look like it ended that way.....according to Xander's face :)

Can't wait to reunite again next summer when my cousin gets married.... :)

hearing aids

2011-06-23T15:16:00.000-07:00

Finally the twins will get fitted for their hearing aids! Their appt is on July 1st. Unfortunately, after that we still have to wait a couple more weeks to actually get them. But....we are almost there! I can't wait. Then the next challenge will be to keep them on. Any suggestions is welcomed.

Just had their review IFSP meeting this morning and they will continue to go to CSDR in their PIP program.

Caden has not received any info on when he will be getting his aids. I have more phone calls to make to follow up on this one. But he will be having an IEP meeting to receive speech services in the fall, in order to "fine tune" some of his speech sounds. His language is not an issue....so he doesn't need a special day class. He will be attending a preschool near our home in the fall, along with other hearing kids. Hopefully he will have his hearing aids by then. Because I do notice myself speaking louder or repeating myself when there is any kind of background noise.

Making progress.... :o)

Braces

2011-06-15T08:20:00.001-07:00

no...not the kind that go on your teeth. The kind that help you walk.

Oh...HI. It's been awhile. 2 months to be exact. It's not like I haven't had a lot to share. My heart is actually pretty full--over flowing to be completely honest. Drowning me in some ways. Buuuut today...I am here to talk about the boys.

Braxton. This little guy has shown SUCH determination. The kid who would refuse to stand and only cruise the couch or any other piece of furniture he could get his hands on, is now walking!! i would now say he is a walker, only because when he walks and he falls down (cuz he does. A LOT), he chooses to get back on his feet vs. take the easy route and crawl. I like to thank Xander (well and OF COURSE God for answering so many prayers in this area) for pushing his twin brother to keep up. Xander is FAST--They are each other's shadow, so Braxton is forced to keep up. He gets so frustrated that he's not as fast, but he is doing his best.
He still "toe walks", which is not good. Mostly his right leg/foot. We've been waiting a month to get back into Physical therapy. Insurance hold ups. Ugghh... very frustrating. But yesterday Braxton got fitted for his braces. Yes, they look just like the ones the infamous Forest wore. Forest Gump that is. The tech. that was fitting him was almost certain the braces would correct his strides to make him walk "normal". This guy has been doing this for 30 years. I have some trust in his opinion/observations. Braxton should have them in two weeks. I know with his courage and determination he will be successful.

Xander. OH xander....my Tasmanian devil. He's my very own Energizer bunny.
He isn't speaking yet (besides using his unique jargon), but is signing between 20-30 words. He is definitely a visual learner, completely benefiting from ASL. It should only be days and he gets to get his hearing aids. I can't wait...his world will change for sure. I'm sure he will still prefer ASL to understand the world around him. At least for a while. We'll see which direction he takes--I predict him to be a kid that can code switch with ease; communicate in ASL and quickly use English when necessary. Xander has this charm about him--and knows exactly when to let it shine. After he smacks his brother in the face, or takes a toy and runs (literally runs) away, as I'm trying to discipline him, that smile...it stops me in my tracks. He's got skills...

Caden. I can't believe he will be 3 in October.... we are currently working on potty training. Even though I'm not spending all my energy teaching him the potty basics, he is doing quite well. (just a min ago he told me he needed to go pee pee). I'm proud of him. the goal is to be completely trained by August when he starts Preschool. He will go three days a week. We are still waiting for hearing aids. It's a longer process for him--I guess since he wasn't already in the system. He would probably do "fine" without them. However his speech is getting more mumbled...not crisp. He isn't able to articulate his words like I think he should. He will have a full assessment by the district and we'll see what the speech therapist thinks as far as speech needs/goals. His IFSP assessment shows that he is about a year a head in language, even with the hearing loss. ALl this to say, he will do fine outside of a signing environment. The twins will continue at CSDR in the fall though.

There you have it. The short (yes this was as short as I could make it) update on the three cutest carmona boys.

As for the rest.
TBC...

walking

2011-04-12T05:01:00.000-07:00

IF you haven't heard....Braxton has taken a total of 7 steps independently. This is really really good. But why am I still frustrated, disappointed, and discouraged by it all....? I've been struggling a lot lately--unspoken of course. So I'm taking a huge leap and about to vomit out what that struggle is. In exchange, I ask for your prayers.

almost 20 months ago (close to TWO years!) my twin boys were born weighing a pound and a half. I have NEVER denied the miracle that happened then and continues to happen. I give God all the praise for the success of their journey. At 6 weeks old, we were asked to "discontinue life support." The doctors all told us that they would be close to what we know as a vegetable. If you know my boys, you know that THAT is not what God had planned.

Xander is quickly closing the gap. He is probably around a 17 month old in gross and fine motor skills. Speech and language is still that of a 4 or 5 month old...but hoping that changes in the next few weeks when we get those hearing aids. cognitively, though, he is a smart little boy. Signing and really trying to express himself.

My time and energy...my sinful worry, is all focused to Braxton. This little boy has made amazing strides. He has always been about 3 months behind xander. He sat independently, later, he crawled later, and now he's walking later. However, his walking strides are not smooth. He has stiff ankles, legs, making it more challenging for him to do this with ease. IF it were up to him, he would choose to crawl or cruise the furniture his whole life. He CAN take steps though...because we've seen it. The physical therapist is ordering ankle braces to help give him a little more support.

On one hand I am SO incredibly thankful that my baby is NOT wheelchair bound, can eat and drink on his own, breathe on his own, cruise around, babble, laugh, engage wiht family and friends, cry, etc. But on the other (dreaded) hand, I see my son as different....I see his frustrations. I see he is left out becuase his brothers are faster and quicker (in all areas: gross,fine,cognitive). It breaks my heart. I start to question everything. Is this a picture of what his school age years will look like? Will he be fighting to "fit in" his whole life? Will he be physically able to be on his brothers sports teams or will he be on the side line cheering with a fake smile? Will xander be in a DHH classroom, Braxton at a different school, and caden at a different school?

I think it's easy and normal to think all these things....to worry about your children. However, I am convicted daily when this happens. My worry is not productive...it's also saying that I am not trusting that God got us this far, He has no plans of dropping us off now. I should know by now that He is not going to rip me off...but like I said...long story short. I'm struggling to trust HIM. i ask for your prayers for braxton, that he can gain the confidence needed to walk (i think this is also part of the reason why he isnt walking). I ask that you pray for his muscles...that they continue to loosen so his steps are fluid. (a year ago he couldn't even touch his toes to his mouth. now he can!) We go see the eye doctor in 2 weeks...his right eye still goes in and I know this can't make it easy to stay firm on your feet either. And lastly, I pray that I can remain faithful and trust that God's got my back. He won't let me down.... And if braxton will have a limp type walk, I pray that God will prepare me for that-- soften my heart to know that "normal" is different for everyone. I know these boys are here for a reason, and I KNOW God will use them for His glory. (he already has)... I still want what I want... when I want. ANother struggle..another blog. a whole other story. ;)

Thank you in advance for your prayers!

God had a plan

2011-03-11T05:37:00.000-08:00

Throughout my adult life and more specifically, this past year, I find myself seeing God's hand on my life. I notice His provision, His protection and His love. That's not to say He wasn't apart of that when I was younger....I just didn't sit and reflect on it. God was already working, marking the path to my future, starting when I was just 7 years old (well, long before that really).

At 7 years old I met a girl, who later became "my sister". At the time, I didn't really know she was "different"; I didn't quite understand that she used her hands to talk because she couldn't hear. We were just two little girls doing what girls do best, Have fun. Before I knew it, we were no longer playing tether-ball at school, and having lunch together, but we were having sleep overs and play dates.

Jumping ahead...As I was applying for college and still not quite sure what I wanted to do with my life, I knew one thing was for sure. God gave me a gift to sign (ASL), and I loved working with children. Soooo, I decided to go into Deaf Education. Instead of play dates and sleep overs, my friend and I became roomates (I guess it is a form of a sleep over) :) Without my first introduction to the language and culture at 7 years old, who knows what career I would have led.

fast forward... While going to college I attended a church that had a pretty big Deaf population. On occasion I would sit with my Deaf friends. There....I met my husband. He was a fluent signer as well, interpreting the church service every Sunday.

Moving ahead 3 years... We got married and had three kids. I don't have to get into the whole preemie story, but its important to remind you that one of the risks of having a premature baby is deafness. We giggled when the doctors told us that. To us-- that wasn't a huge risk.

YESTERDAY, we took the boys to the audiologist at Loma Linda Hospital. This was their 3rd visit/audiological exam. We knew that they were showing signs of hearing loss; The tests themselves were showing a mild/moderate loss, and their language is very delayed (that of a 4 month old). Yesterday it was confirmed that Xander indeed needs hearing aids. It was shocking to find out, though, that his loss is more on a scale of moderate/severe (about 60 db across the board. 20db is normal). Braxton's test is next week, but pretty sure it's similar.
Caden, also had a hearing test yesterday. I went in thinking that his loss would have been the kind of loss that is easily fixed with tubes (conductive loss). Well that's what the ENT suggested originally. When in fact, after the exam, he has a true moderate sensorineural hearing loss (nerve/genetic). The doctor was adamant about getting him hearing aids ASAP. He does not need tubes after all. Tubes would do nothing for him. He was VERY impressed with his ability to complete the test and with his language skills. They did an exam that the do on 3 to 3.5 year olds. Being the first child, we were able to sign more to him and read a whole lot more. This has tremendously helped his development in speech and language.

Today.... I am SOOO thankful that God placed my friend Kelly in my life 25 years ago! I was driving home from the store yesterday and I had tears in my eyes as I was reflecting on how God has been preparing us to be parents of three (NOT ONE), but three hard of hearing children. There was a moment (literally just a moment) of sadness. Then I began to smile...God has been in this since day 1. As we start the next journey of getting hear aids and working through educational decisions, etc. I am confident that God will also be present--leading the WAY.

So this Blog entry is to Thank GOD...and to THANK Kelly Baldwin for being such a faithful friend. Both, opening up so many doors of opportunity for me (and my family).

SO PROUD

2011-02-02T05:14:00.001-08:00

Forgive me, as I'm about to brag....A lot....about my son. :)

Caden has been such an amazing little boy the past few weeks. He has been so sweet to his brothers, using such great manners, really seems he's trying to practice obedience and make him momma and daddy happy. YES....he still has his "I'm 2 and will act like it" moments--

But I wanted to share how proud I am of him. If his brothers get hurt, he will go to them quickly, and kiss their head and say, "its otay." (often not saying the 'k's) If his brothers are crying in the car, he will reach over to touch them and say, "it's otay, we almost ome." When his brothers are fussing during their diaper changes, he will come over and try to distract them for me. (without being asked at times!). When we were at the doctors this week, he was using Please and Thank you a bunch, and spontaneously. The nurse was so impressed she walked back into the room and had to give him a high five and praise him for his sweet manners.

Phil and I have been AMAZED..literally, with caden's ability to throw a base ball(nerf style), dribble a soccer ball, then yesterday we were pitching balls to him, and the kid can HIT! I foresee travel ball in our future. ;) Till then...we will sign him up for soccer (AYSO) in the fall.

Love this little man....more and more everyday! He is such a blessing.

Caden's ears

2011-02-02T04:59:00.000-08:00

As some of you know, caden's hearing test came back "abnormal". He has a mild to moderate hearing loss. Monday I took him to the ENT at Loma Linda. (luckily the insurance allowed us to go out of network to the pediatric specialist, due to the fact the boys also go there).

Caden's ear drums are slightly retracted (sucken in), but no visible fluid. SO he is getting some negative pressure when they test the inner ear. As my pediatrician warned me, the ENT's first suggestion was going to be, "put tubes in his ears". I asked if this was a guarantee that he would hear better, and she said no. Right away I then asked what the second option was and then the third. Second option is get his ears retested at Loma linda, then third option was hearing aids.

At this point, we are waiting for approval to get his hearing re tested at Loma Linda, with the same audiologist that his brothers have. (i really like him). Once we have those results we can make a more informed decision. As of right now, we are not going to do any surgeries. His loss is a mixed conductive/senori neural. This means that the conductive part (inner ear "issues") could be fixed, but then that would still leave him with a nerve hearing loss (thanks to genetics). Hearing aids are probably in his future as well.

If you know caden, you know a boy who talks a lot, and seems to have a wide range of vocabulary. He carries on conversations, and is a quick learner. After the results came back, however, I now see letter sounds that are missing, and notice him wanting the radio, tv, computer turned up, he speaks VERY loudly, and misunderstands me at times. To compensate, I have been using strategies you'd use on anyone with a hearing loss. One, being, look right at him and speak clearly.

Just like his momma...one on one situations and small group settings, you would never know he had an issue with hearing. The audiologist in LA said that you will start to notice the loss when he gets in school... so to prevent that we are taking action now.

Maybe loma linda will re-test him and prove the first test to be completely off. We'll see...
Hoping the referral comes back soon, and we can have this appt this month.

John Tracy Clinic (hearing tests)

2011-02-02T04:48:00.000-08:00

Yesterday Phil and I took Braxton and Xander to LA, to a pretty famous place: John Tracy Clinic (JTC). It's a facility that educates and gives tons of support to parents of Deaf of Hard of Hearing children. (however they don't use the term "deaf". More on that later).

Per our audiologists suggestion, we went to JTC for a second opinion. I was anxious to get these tests done, because it was a play based test, vs the kind where the boys are sleeping (ABR). This test was suppose to give more accurate results. That is, if the boys cooperated. I'm not saying the visit was a waste....cuz it wasn't. However, the audiologist doesn't feel like she got thresholds (the lowest sound that they boys can hear). Her results actually showed worse hearing than the initial ABR tests taken at Loma LInda. Braxton was restless--very annoyed at the little ear phones he had to put in his ears. Xander did great. He fussed a bit then just sat real still playing wit the toys. He was so involved with the toys, he started to tune out the noises and not react to them. SO we took the toys away and then he seem to have gotten bored with the process of looking at the light up toys that were suppose to be associated with the sounds. (his attention span is SMALL).

SOOO.....now what. The boys will get another ABR, the brain stem test, before they get fitted for hearing aids. Although I trust Loma Linda, and really like the audiologist there, I think we are going to take them to H.E.I ( another famous facility in LA: House Ear Institute). They give the boys meds that knock 'em out in a deep sleep. Loma Linda requires us to starve them, keep them up, and then put them to sleep ourselves when we arrive to the appt. If you can imagine, that is not fun...for anyone. I rather drive to LA.

Hope to know more in a few weeks....Till then we are signing like crazy with them. THey are both signing "more", and xander is almost waving "bye".

First day of "school"

2011-01-28T06:25:00.000-08:00

My boys...all THREE, attended the PIP classroom. (Parent Infant Program is an all signing Early Start preschool) Caden joined, because we weren't staying the whole time. And he did great! The teacher asked multiple times if we were registering him to also be apart of the program. (if you don't already know, caden has been tested as having a hearing loss as well. But further testing is happening on Monday. More on that later).

Here are a couple pictures from our first day. I won't lie....it was overwhelming. The kids are 18 months -2.9 years old. But they seems years older, because of the size difference and their abilities. The second time we went (yesterday), the twins did SO much better. They actually sat during circle time and seem a lot more comfortable. I think the key is a nap and food right before class. We will continue to go Tuesdays and Thursdays. I really think the interaction and exposure to typical developing kids will help them tremendously.

*notice how much smaller the boys look in these pics. The other kids did really well with them though. Xander, especially, was very interested in watching the other kids. I'm excited to see some growth in different areas.

Parent Infant Program

2011-01-08T05:44:00.000-08:00

Braxton and Xander will be attending the early start program at my old job, California School for the Deaf, Riverside (CSDR)! We had our IFSP (a meeting to discuss goals and best placement for the boys) this week. The team decided because of their hearing loss and lack of language at this time, the boys would best fit the Parent Infant Program (PIP). It's a signing environment, but they do have speech goals and will see a speech therapist. I could not be more thrilled! We loved the teacher and the class has 7 other children ranging from 18 months to 2.5 years old.

I only have one concern...GERMS. It is the middle of flu season. They will be around multiple kids and a lot of germy toys. NOt to be paranoid, but I really don't want to go back in the hospital with one of them. I'm weighing the cost....language, socialization vs. the chance of getting real sick. I feel God tugging me and telling me, TRUST ME...PRAY for your little ones and let them grow and develop and experience what this classroom has to offer.

With that said, we will go in on Tuesday for about an hour to see the boys roam and check out the set up of the classroom. Then we will probably start going T/TH for a few weeks, working up to M-Th (8:00-11:00). I will (or my mom will) have to be there until they are 18 months old...then the goal is to drop them off. This will be soo good for them, because they are very (especially xander) attached to mommy.

So..here's the start of another chapter in our book of "life raising preemies"!

OVER LOAD

2011-01-06T06:29:00.000-08:00

As I have mentioned in the recent past, the twins have had some hearing tests done that have come back abnormal. There is a definite hearing loss, but at this time we don't know the exact amount.
I sort of predicted that the boys would have some issues with hearing....not really giving it much thought. But now that they are 17 months (13 months adjusted) and only babbling mama, I am getting more concerned and starting to find myself on the phone with more specialist, on the Internet looking up more terms, and my mind is going non stop. I think there's a fine line between being a concerned and involved parent, to an overly obsessed control freak. Well...I am currently leaning towards the freakishly obsessed parent. This only got worse when we took caden to a hearing exam this week and he shocked us. He was showing a moderate hearing loss! Caden of all people. There is a huge chance it's just fluid blocking the sounds, not allowing his ear drum to move properly. We are being referred to ENT and we'll see what they find or suggest.

Next week we start the process of getting xander's cyst removed. So we go to a consult with the surgeon, and then the lung doctor and then the ENT for clearance for surgery.

So-- here is sit...just spent my awake alone time googling tons of stuff on preemie hearing loss and resources, and blah blah blah. Is it doing me any good. NO. I have done all I can to this point, so I need to just shut the computer and start my day. My day of NOT worrying, NOT obsessing and just trusting the GOd has it all under control. I often think I am in the driver's seat, and this morning I am reminded and am VERY grateful that I am not!

The boys will go to John Tracy Clinic on February 1st for second opinions on their hearing loss. Is it progressive (like mine)? Is it something that will in fact interfere with speech? I still have so many questions and very little answers. Part of being a mom to micro preemies is learning to "wait and see". waiting for me.....you see.....is NOT easy.

BUT okay God...I get it. Surrender to you....trust that your will be done....and that I just have faith that my boys are in good hands. I pray for wisdom to be the best advocate the boys can have and that God would just direct our steps as we start this next journey (school!). Boys have an IEP today....they may be qualified for an Early Start Preschool.

My ramble...inspired by strong coffee this morning and lack of sleep (as we are weening boys off of their 12 am feeding), is officially over.

TBC

Happy New Year!!

2011-01-04T06:18:00.000-08:00

Our New Year's Day was spent at one of my most favorite places..THE BEACH! Living in Riverside now, I don't get to see the beach as much as I want, and definitely not as much as I did.

My cousin Kirsten and friend Heidi both joined us for breakfast and a stroll down main beach in Huntington. The boys loved the sand (first time touching it) and the weather couldn't have been more perfect.

2011 is going to be an exciting year....no doubt another year full of challenges and changes. ( As you know, if you have kids, you master one area in parenting and a whole new season begins.)
But one things for sure....

I*LOVE*MY*FAMILY

Thank you Lord for giving me a chance to learn, change, forgive, and love...I pray I can do this job even better in year 2011!

hearing aids in the near future

2011-01-02T06:16:00.000-08:00

Introducing the "speech banana"
I'm not trained in audiology, and I don't know all the technical terms related to audiological testing--however, I have some background in dealing with hearing loss (as a teacher for the Deaf and having my own hearing "issues"). Even if you do not have any background in these things, you can look at this "banana" and interpret it pretty easily.

The numbers running across the top are the frequency sounds (type of sound). The numbers going down is the range of decibel (loudness of sound).
Inside the white banana looking thing, is where we hear all the speech sounds; the sounds vary in decibel as you see.

Braxton and Xander have started some audiological testing with the results somewhat inconclusive due to their age. However, this last appt (last week), the doctor was giving us more of a realistic look at what he may or may not hear right now.
Looking at the speech banana, Xander could hear at a threshold of 40 (at about 400 fq) and 45 (at about 3000 fq). so if you plot those lines you will see the letters positioned above the line are the speech sounds he could miss out on. Every thing below the line he can hear. (note: "normal" hearing is above the 20). There was nothing plotted around the 1000 to 2000 fq range, so I'm not sure what is being heard . From what I remember the doctor saying , hearing is fairly "normal" in this area, so when plotting, the line wouldn't go straight across horizontally.

The reason for all the quotes and uncertainty is because with the boy's ages you can't test the exact DB loss. So the doctor was giving us a worst case and best case scenario. I sorta explained what it would look like in between. When the boys are about 2, they can be tests by turning their heads when they hear a sound, looking at a toy or a light when a certain Db/Fq sound is played. This would give us a better graph on that banana. (I have to go back to school and become a trained audiologist to really explain what i just attempted to explain) :)

SOOOO what does this mean?? It means that the doctor recommends hearing aids for both boys, and speech therapy. Their speech is only that of a 3/4 month old. This could very well be due to their hearing loss, developmental delays, prematurity, being boys, etc etc. Probably all of the above.
Early intervention is key. Although they aren't deaf, and really do hear quite a lot. They are missing some sounds that will effect the ability to articulate speech accurately. These interventions might only be temporary, but necessary for the time being.

Looking back at those meetings in the NICU (with the doctors, nurses, social workers, etc), I remember them saying they could have hearing issues, and how phil and I just smirked at one another. God knows what we can handle, and if this is the extent of their "preemie" issues, bring it! and i won't lie...I'm getting pretty excited thinking about what color hearing aids I should get the boys. Yes....colored aids are totally "in" if you are a kid :)

The boys have come A LONG way, there's no question there. I am very very proud of them! The recent hearing issues are one of the, still, multiple issues we could be facing as they are still developing. Your prayers and support are still very much appreciated!

2010-12-31T05:49:00.000-08:00

cheer up boys..it's CHRISTMAS! (after looking more at this pic, don't they look like triplets?! with the exception of a little age gap on skin and hair tone difference and and...okay maybe not triplets...but VERY similar)

Opening stockings

Starting to figure out that this is suppose to be fun.

Braxton having more fun with Daddy than those stockings

Tell us how you really feel Braxton!

Looks like he's going to like his brother's toy (great thing about their ages...the toys entertain all three)

Love my doggy that my auntie suz got me. (I sleep with him)

Fire truck!

Caden: candy is for later
Andrew: where is it
Caden: it's for later
Andrew: where is your candy
Caden: it's in my pocket
Andrew: sigh of relief to finally get an answer

Let's shake on it.

Watching cousin Baily play with her video game

Day after Christmas...exploring all the new toys.

The Boys were super blessed by freinds and family this year! It was a great "first" christmas for the Carmona family.
Hope it was a very Merry Christmas for all of you too!

Happy Birthday Jesus!

A few proud moments

2010-12-18T06:14:00.000-08:00

Although this is not a good picture...and doesn't look like something to be proud of. The moment before the tears was the moment I was trying to capture. Xander has been playing "catch" for the last two days. He totally understands the back and forth concept. Very cute. This moment that you see...is him being very dramatic because braxton came and took the ball. :)
Braxton is munchin' on a ritz cracker. Not a big deal to most moms of 16 month olds. However, this is the FIRST time he has every grabbed a cracker and knew to take bites from it. At first he would smack it away. Or I would have to encourage him to even take the bites I broke off. He looked like a true toddler right here. (xander has been eating crackers like this for just a couple weeks as well).
I asked caden to draw me a circle. I was really impressed with his attempt. He knows how to identify circles orally, but didn't think he could get so close to actually drawing one. Yesterday, phil and I were sitting with him and I asked him who's thumb was bigger, phil's or mine. He chose daddys. Then I asked who's thumb was bigger caden's or mommys. He chose mommys. Then we put all three of our thumbs together and asked, "who's finger is the smallest". He threw his up and said, "caden's!". Maybe no big deal...maybe all 2 year olds do this. But to me it seemed like pretty high level thinking. And as him momma...I was proud :)

okay. brag time is over. :o)
I love my boys!!!

braxton

2010-12-18T06:01:00.000-08:00

BRAXTON CAN NOW HOLD HIS OWN BOTTLE!

We have been trying to teach him how to do this for months now (as xander has been holding his own bottle for a while). Braxton, somewhat of a Prince's mentality, didn't think he needed to put forth the effort. Well..times are a'changin'.
Praise the LORD! (for so many reasons)

PIP: Parent Infant Program

2010-12-15T05:19:00.000-08:00

The boys, Braxton and Xander have had hearing tests, which have revealed a hearing loss in the high frequency. The audiologist mentioned that early intervention would not hurt at this point. SO I called my old school that I worked at, CSDR, and looked into their Parent Infant Program (PIP). After a few phone calls, an initial meeting to evaluate the boys, we now have an official meeting on Jan. 6th. This is where we will determine the best placement for them and create some goals.

I'm excited about this opportunity, because the boys will be fully submerged into an ASL environment for a few hours a day (M-TH).

Weeks and months to come, we will find out more details about the boys hearing loss...if they will benefit from a hearing aid and if they need to continue with speech therapy, etc. Time will tell....kinda the token phrase of this whole preemie journey.

Braxton's eyes

2010-12-15T05:14:00.001-08:00

It's almost been a week since braxton's eye surgery. The first one, done in august, seemed to have a whole different recovery/healing process. This time around has been a lot harder (for him and me!).

His eyes seem to be more red, more swollen, and more irritated. He is constantly wanting to rub them and when he wakes up from any nap it takes literally an hour or so for him to finally open his eyes. He is extremely cranky. That's not to say he doesn't smile. HE has moments where his eyes don't seem to bother him. But for the most part it has been a rough week.

I called the doctor and she's suppose to call me back today. We have a follow up appt tmw, so I want to see if she would like to see him earlier. I fear there's something wrong. The left eye also, to me, looks way more crossed. The risk going into surgery, is that the muscle can detach. Im praying this didn't happen, or he's going right back under the knife as an emergence.

Pray for my little guy...I can't wait till he can just be done with eye issues. I'm learning how to be faithful and trust in God that He is in charge here. But it's been a challenging week for that--i won't lie. I worry way too much....I need to let go. Working on that.

assume the position

2010-12-01T18:09:00.000-08:00

I had a rare opportunity to escape upstairs and do whatever it is I WANTED to do...for me. No one else. A time to read, watch tv, catch up on mindless internet surfing...oh and of course Facebook. But all that was ruined....I hesitate to use the word ruin, but yes. I"ll keep that word. All that was ruined because as soon as I propped myself up in bed (you know how you do. A few fat pillow behind your back, one behind you head and your body is slouched just perfectly, looking as if you ate a few too many brownies). Your comfortably sitting with your laptop in place, ready to "play". However, once I assumed the position, a FLOOD of memories came rushing to the forefront of my mind. For one month....four and a half weeks to be exact, I assumed that position.

The truth is...many nights when I get into bed, the first thing I think of is that month I spent cooped up in bed. And I think...no wonder those boys came so early. Look how I was sitting! sitting up. however, slouched. No one told me specifically to lay flat. No one said to basically hang from your ankles. No...I'm not blaming the doctors. And I'm definitely trying not to blame myself. again. But nevertheless, my rare opportunity of solitude has been overtaken by these vivid memories. Memories that will mark the beginning of a huge journey--a journey of which I am still on.

another eye surgery

2010-11-30T07:47:00.000-08:00

I got a call yesterday that I was not expecting. I knew Braxton was going to need another surgery, but I had assumed it would be in January or even February. So much for assuming. The test is next week! December 9th, he will go for his second surgery, in attempt to correct his eyes from crossing.
I am thrilled and scared all at once. Thrilled, because his original doctor will be doing the surgery. There was a big chance that she'd go on maternity leave before they could schedule Braxton's surgery. Scared-- well for the obvious. It is surgery. A weird, and I know, maybe not so valid concern, also entered my mind. The doctor is VERY pregnant. Will this effect her ability to be as precise as she needs to be. What if the baby kicks her right when she's about to cut. okay...so now I'm smiling...cuz i realize that is a lame fear to have. or is it.....

Nevertheless, please keep our lil man in your prayers. We want so very badly for this surgery to be successful and for him to be done with vision impairments.

Xander's hearing test

2010-11-30T07:45:00.001-08:00

oops...mom slipped up. I forgot that xander has an ear infection in his right ear. Therefore, the initial test was not giving any signal. His ear drum was not moving. This is 99% due to the infection. THey did do the screening in the left ear, and the results were very similar to braxton's. So of course they want to do the ABR test in both ears when his infection clears up. So we have an appt. on the 14th to get better results. As of now, it is assumed he has the same high frequency loss. I'm now curious if genetics, the fact that they are identical twins, plays a role in the very similar graphing.

more on this in a few weeks.

Maybe you can't hear me

2010-11-28T05:29:00.001-08:00

Phil and I took braxton to his audiology appointment last week. We started off by doing a 2 minutes screening to see if he needed the ABR (more complex test which required him to be completely still/asleep for at least 20 minutes). The doctor wasn't impressed with the initial screening; it was showing some loss, but you can never be too sure with that test, so he went ahead and did the ABR.

He was GREAT during the test....and well....lets face it, mom was pretty good too. Someone had to keep him asleep :)

After the test, we went into the conference room, and the doctor started off saying he wasn't worried at this point. But in the same breathe he said that Braxton was showing a high frequency hearing loss. He said that because of the extent of his prematurity, his brain could be playing a huge role in what he hears. His brain might not be processing those high frequency sounds yet. So we will go back in a year to determine if he will need a hearing aid or not.
So the results were inconclusive at this time. I know he can hear...but I would not be surprised if he did end up having a high freq. loss. Being that he is a micro preemie and I have a history of hearing loss it would not be completely shocking.

Xander goes to the same appointment on monday morning....

Happy Thanksgiving

2010-11-26T05:27:00.000-08:00

Last year we had so much to be Thankful for....Braxton and Xander were alive and by this point, we were pretty sure the daily scares of death were behind us. However, this year we have so much more to be thankful for. The boys did not have to spend their Thanksgiving in the NICU, but were home with us....we were officially celebrating our first Thanksgiving as a family of 5!

We had a small gathering with a few of my cousins, my mom and my step dad, and my nephew. But all I could really focus on this day, was watching my babies cruise around the house--not having a clue of how special it was that they were here with us. One day they will realize the special gift they are to us and to many people around.

Praying over our food- Caden is very much into praying. :)

An attempt to get a group shot. we'll try again next year.

My little man...holding a chess piece, contemplating his next move.

Party ANIMAL...that's all I gotta say.

My cousin jaime (from Iowa), with her lil' 2nd cousins.

celebrating!

"auntie" Kirsten (my cousin) with Braxton. Having a moment.

RIP

My little ham!

This kid follows his GG around all day...as you see, they are in love.

Making sure we weren't burning the turkey (don't worry the oven isn't hot)

Grandpa doing what he loves to do, rock the kids to sleep.

Happy Thanksgiving!
xo

Can you hear me!?

2010-11-22T07:31:00.000-08:00

Braxton and Xander have their hearing tests this week. Braxton's is tomorrow and Xander's is next week. I wish it were the same day, but I guess for this type of test they only do one a day. (time consuming).
They have to get to the appointment very tired and very hungry. Makes for a fun morning for mom and dad. So for tomorrow, I plan to wake Braxton up around 4 (or if he is on his schedule, he will wake ME up at 4). Then I will give a little milk, but he is going to be grumpy because he will want more and want to sleep. Phil has to come with me, because someone has to sit in the back with him, to make sure he doesn't fall asleep. The goal is to have him sound asleep for test. So right when they are about to do the test I will feed him and he will most likely konk out. The test takes about 30 minutes from what I understand and if he wakes up..well...then we have to reschedule and try again another time.
I NEED prayers that he will sleep-and sleep without moving. hmm...seems impossible, huh. NOthing is impossible tho (as we know!) Some places sedate but not this place I guess. Oddly enough..it's at Loma Linda...I"m surprised.

So tmw morning at 8:00 we will be attempting this test. My predictions are that he might have a slight hearing loss, but nothing worrisome.

thanks for the prayers.

Up date on twins

2010-11-19T06:18:00.000-08:00

Braxton Edward:

As you know he had eye surgery in august (2010), in attempt to fix his crossed eyes and nystagmus. Right after surgery, they were great, then they started going crossed again. They are better than they were but still not straight. He gets around great, and appears to track much better. He doesn't take as long to find your face and to focus on it. But, with that said, there's still a lot of crossing going on.
Phil took him to the eye doctor on Thursday and the doctor said it would be best to have another surgery. So....that is what we are doing. We are waiting to hear what date we will do it. She seems to think another surgery will help even more. As far as if his eyes will be "perfect"....thats unknown. Our doctor is pregnant and going on leave in January. We would LOVE for her to do the surgery again before she goes on maternity leave. Praying this can happen. OTherwise her colleague would have to do it. She raves about her....and i've met her, but to ease my comfort I want what I'm use to--and what I know. I'm sad that braxton has to go through this again, but I'm excited to see more improvement.

Braxton is doing SO well as far as meeting milestones. He is crawling on all fours, pulling himself up on furniture, cruising along furniture, etc. He is even understanding cause and effect. I will open a toy and he knows to shut it. He knows a button will open that toy back up. It's amazing to see. He will cry when he meets new people (age appropriate), he will also stop crying when mommy or daddy holds him. Cognitively seems to be trucking along-- His movements, however, are not as fluid and smooth as xanders. He is more rigid and very unstable. When he pulls himself up, you still have to be near him cuz he will fall...hard. He doesn't quite catch himself with ease. It's getting better...he tries to catch himself, but not graceful at all. We were told this is probably due to the cerebellum bleed that he had in the hospital. That part of the brain controls movement/stability/coordination. I'm very proud of him....he had a grade 4 bleed (worse bleed you can have), and a bleed in his cerebellum and he's doing all this. No one thought it was going to happen! Our God is good....

Xander Phillip:
Xander is also doing very well. He is a little ham....he's also going to be my willful child for sure. He has a mind of his own and that mind is always going. He loves to be center of attention (hmm...sounds familiar). He, in my opinion, will be walking within a month. I would say by Christmas. He can stand for a few seconds by himself.
He has a cyst on the side of his eye. We are waiting to get a consult from the ped. surgeon to see about removing it. His lungs should be strong enough now to undergo the surgery. (always thinking, in the back of our mind, about the MRI scare in the hospital).
He has to see the dentist soon again...his teeth have some enamel issues. This is related to him being a preemie. We just have to be more on top of brushing and taking care of his little teeth to avoid cavities; it's easier for him to get them.

Both boys will continue to get OT, PT, IRC (inland regional center), and speech therapy. Both boys have their hearing tests next week, which I'm very curious about. I know they hear...but what sounds they hear is still a mystery. Xander didn't really turn to the sounds the doctor was making. However, he turns when you say his name. We'll see...

Thank you for your continued support and prayers through all this. Although we are not waking up daily wondering if our kids will be with us or not (thankfully), there are always new challenges with raising preemie twins (whom are 15 months old [actual] already) and a very active 2 year old. These challenges can easily bog us down with worry if we are not focused and surrounded by such encouraging people. So thanks :)

Developmental clinic update

2010-11-18T05:23:00.001-08:00

Boys went to their appointment this week. The news I got was good....the Physical Therapist had so much to say about braxton's growth and development. She was very pleased to see he was crawling and cruising around furniture. She said, multiple times, she is not worried that he won't walk. She said it in such a way, that it was obvious she had that concern the last time. She did say he is still showing signs of having low tone (tightness) in his ankles, hamstrings and trunk. She showed us some stretches to do to help this. The fact that he is meeting those gross motor skills, though, is very good. VERY. God is so good....this kid wasn't suppose to be able to do any of the things he is doing now.
As for xander...she wasn't concerned with gross motor skills at all. In fact, her assessment on him took half the time. She did say that she would like to work on his attention span. He is very hyper and a big concern with preemies is ADHD. He's also a boy and so i"m not focusing all my energy on trying to label him (especially THAT label....happens too often, unnecessarily....i could on and on about labels. I'll spare you...)
health wise....their lungs sounded good. They have runny noses, but tis the season. No big concerns there.
Over all it was a good check up. We are moving in the right directions :)

GOd is so faithful and so amazing--without Him, I know my boys would not be here with us today. There's no doubt in my mind that God is going to use me...them...us for His glory. Can't wait. Bring it! ;)

Developemental clinic

2010-11-15T15:31:00.001-08:00

Phil and I take the boys to the High Risk Infant clinic for a check up tomorrow-- This is the place where the different specialist look at them; physical therapist, dietitian, doctor, etc. I am always full of mixed emotions leading up to these appointments. Its the place where they tell you (or remind you I should say, because deep down I already know) how far behind they are or where they are lacking in different areas, etc. It's also the place where I get to hear, "wow, they are doing great." or "I can't believe how far they have come." And so on... Yes I hear these things already, but coming from the doctors that took care of them when they were just 8 days old, holds a whole different weight and registers way differently in my mind.

Will let you know how it goes.

Praying

Brothers

2010-11-13T06:09:00.000-08:00

While caden sits and watches a netflix show, his brothers are in the other room having a deep deep conversation. (btw: Caden's attention span is that of a 8 year old when it comes to watching movies/shows on the computer...it's awesome)

The conversation got a little heated....They're brothers. It's bound to happen right. A little physical action is going to be second nature soon enough.

Xander: just hold on...that's not what happened.
Braxton: Well...mom isn't going to like this...we need to come up with a story.

Xander: yes! good call brother! I love it!

twins

2010-11-06T06:46:00.000-07:00

I was watching a show this morning and they were talking about twins---they showed two men that were identical.

Yesterday I was at the gym--I had my iPod on, but turned down the volume to listen to the two ladies that were talking next to me. Yea, I know...kinda stalkerish and weird. But they were talking about having 5 year old twins. I had to hear what was being said.

At my church there are identical twin girls that are in the class I help out in.

I saw the movie, "social network" and if you have seen it, you know two of the main characters are identical twins. men.

Last weekend phil and I took the kids to the pumpkin patch and we ended up meeting a mom with her 4 year old twins boys.

Needless to say...now that I am a mom of twins, it seems like I"m a magnet to twin convos or seeing twins all around.

Many of you know that I have WANTED twins every since I was little. I even went as far to say I was GOING to have twins. Twin boys to be exact. I know..strange. My mom is a twin and I knew my grandma actually had two sets of twins. So it was bound to happen...in my mind. With that, I had all these preconceived ideas as what it would look like to be a mom of twins. I had the emotions already lined up and the experiences mapped out in my mind. It was a good picture I had.

No...I'm not now living a "bad picture"...but...my hopes and dreams of having a full term pregnancy with twins got flushed away. I never really got to feel them wrestle in my belly. Does this mean they wont have that same "twin" talk people mention...or the same closeness identical twins have?

All the talk and seeing twins around me is bittersweet. I'm working on accepting the way things are and letting go of what could of...or in my mind...should have been. After all...it was a long awaited dream that--well....sorta came true. Will my twins be in the same class....the same grade for that matter? The same school? Will they be on the same teams or can they even play the same sports. .....

sigh....

more on this later.

"working"

2010-11-03T07:36:00.000-07:00

pic 1: xander just got into simbas water dish and got all wet. so he went free for a min. while everyone took an ice cream break. As you see xander wanted to try the ice cream. and did. and lOVED it.
pic 2: Caden enjoying his ice cream while sitting in his new chair. no my kids aren't spoiled ;)
pic 3: xander feeling like a king. ANd...caden not too sure about him sitting in "his" chair.

I was teaching my class yesterday when my phone kept going off. I kept getting a text message...and, yes...I was THAT teacher who tells the students to silence their phones and doesn't do it herself. (for the record...this was the first time that has happened). Poor girl was giving a presentation the oh so very rude interruptions.
When I was able to look at my phone, it was some pictures my mom sent while she was at home with the boys.

Standing there, in front of the class, I was looking at the pictures and had a permagrin. My kids are soo happy with GG and she does such an awesome job with them. It makes it that much easier to leave for a couple hours. BY THE WAY....she is here, ALONE for 3 hours with the three boys. An hour is hard. but three! Thanks MOM!

I AM BLESSED!

I am soo blessed that I have a mom that would come twice a week to watch the kids so I could get out and "work". I say "work" with quotations, because it's not really work to me. It has been so much fun teaching a college level course. Yes there is papers to grade and planning to do (not the most fun part), but once there, in class...it's an outlet. It allows me to use my teaching skills again. (After all...I did go to school for 7 years!) It reminds me that i still have a brain! ;) A few cobwebs here and there from motherhood...but it's slowly getting cleaned out.

I was just offered two more classes for next semester-- night courses...and if you know me. I'm not a night owl AT ALL. But...probably will make it happen.

*in case you are wondering where braxton is...he is sick. croup. So he was probably in bed during the all the fun*

Halloween

2010-11-01T05:27:00.001-07:00

We had a fun family day at a huge pumpkin patch and then went to a local church to their harvest festival/carnival that evening. Caden really enjoyed himself...I think he is finally coming out of his shy/nervous shell. He was willing to try new things, where as last year (or even a few months ago) he was afraid of everything. Glad that stage is coming to an end. The twins just chilled....they don't get as anxious with noise and crowds. pheww....

I sorta felt like a freak show at a circus tho...I kid you not. EVERY turn we made, people starred at us. If they weren't staring they were making comments about our stroller, or about how we have our handsful. (I would be a RICH girl if I had a quarter everytime I heard the phrase, "wow you really have your handsful"). Some people asked if they were triplets (that was the first...but knew that would come sooner than later). I don't mind the attention (c'mon), but after awhile it does get a little embarrassing. I feel like I need to go home and practice my miss America wave so for the next time we are all out in public, I am prepared.

Croup

2010-10-31T06:28:00.000-07:00

Caden was sick for 2 weeks...high fever, throwing up, croup, etc. etc. Seemed to never go away. Then...xander. It felt like over night he started breathing heavily. No real warning signs. I went to work on Thursday and then came home to find him breathing so hard that his stomach was retracting and the area around his clavicle bones and neck were sunk in with each breathe. At that point, I knew we better go to the doctor. The nurse assumed the doctor would send us to the hospital because Xander needed steroids that only the hospital could administer. So we went and spend 2 days there. After the meds kicked in, he came to life again..so to speak. He had more energy. With more energy, left mom with less energy. It was hard keeping him entertained in a sterile room with no toys or gadgets for him to play with. So...it was either in my arms or in his cage (what I suppose was a crib but looked more like an animal cage), and he didn't like it in his crib.
Thankfully, he is home now and doing much better. Fever is gone and cough is gone. Now we are praying that braxton doesn't get it...Thanks for your prayers and support. I'm praying it's not a long winter.....

Forgiveness

2010-10-25T06:12:00.000-07:00

Is it a concscious decision? Is it a physical act? How do you go about forgiving someone that has hurt you or done wrong? Questions I have been pondering. I am not one to hold a grudge. I think it's counterproductive and a waste of time. SO the opposite of holding a grudge is to forgive and let go. But it's not always that easy.

I can't forgive alone. God has to come by my side and help me. I have to trust that He will restore my heart. The hurt might still linger, but the freedom of forgiving is so powerful. Forgiving is against our nature...as humans we are evil. Mean. But by faith, and trusting in God we can do it. What if I get hurt again...by the same person. By the same thing? Then...I forgive again. It's worth it to me...to take risks rather than to live alone without or neglecting deep friendships.

Colossians 3:13
Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you.

Our God is a forgiving God-- we are called to obedience and forgive as well.

So forgiving others is hard....but doable, with time and prayer. And once it's done, it's like a ton of bricks has been released from your shoulders. Now you can work on restoring the relationship. It may be slow...but I believe the bond will be stronger.

What about forgiving yourself...?

Philippians 1:6
And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns

This blog was/is intended to be the raw truth of living this life. I am struggling in the area of forgiveness....but not forgiving others. Forgiving myself. I put a lot (A LOT) of blame on myself for what happened August 18, 2009. My little boys were born 16 weeks early, that's 4 months! They were born with their eyes still fused shut and their skin paper thin. They were born with holes where they shouldn't be, lungs barely developed, and brains that were bleeding.

Dealing with forgiveness lately--forces me to think about forgiving myself. Or maybe there isn't forgiving that needs to take place. Because maybe it wasn't my fault in the first place (so I've been told) Nevertheless...there is healing and restoration that needs to take place. I'm a work in progress...and ready to make some huge strides in these areas.

Isaiah 41:13
For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

"is it xander.."

2010-10-22T06:45:00.000-07:00

The last couple days Caden has been saying, "is it Xander..." "is it Braxton....". I didn't have to think very long to realize why he was saying this. Both the boys, Braxton and Xander are now mobile. They are both crawling and using furniture, toys, each other (not the best strategy...gets pretty ugly) to pull to a standing position. It makes Caden take a second look to see which is which. He bends down low and looks at their face then confirms to me..."it's xander". :0) Its very cute.

Makes me excited that Braxton is closing the gap between him and his twin. THey are both falling behind, developmentally in other areas. But nevertheless, the gaps are closing. We...they....are making progress. Thank God.

14 months old (10 months adjusted)

2010-10-18T05:30:00.000-07:00

Hard to believe how far my little men have come. They are 14 months old today....but still wearing 9 month clothing. Since they are former preemies, they will be smaller. However, I think we just produce small kids. Look at us...we aren't necessarily giants. Caden is 2 years old now and in 12-18 month pants still. (truth be told 18 months falls off of him most of the time).

Twins will go to the doctor this week to get their flu shot and their synagis (sp) shots. I am curious to see how much they are weighing. My guess is 17 pounds. However, they were sick throwing up yesterday--hope that doesn't set them back too much.

....TBC....

Nanny

2010-10-18T03:46:00.000-07:00

Looks like it's official. Phil and I hired a nanny last week. We have been SOO blessed this last year, with help from friends and family. People would come over to assist with taking care of the babies and caden, people would help with laundry and make sure the dishes didn't get stacked too high, people just happily served our family. IT still amazes me--and I have learned so much about the importance of serving others.

As the year crept a long, the help got slower. As expected....people can't dedicate their whole lives around the carmona clan. I would never want that either. My mom comes on Tues/Thursdays and phil's mom had been coming on Mondays. That left three/four days a week (cuz phil works all week) where I was at home by myself. Yes..it is doable. However, nothing else was getting done. The laundry room was soo congested with smelly dirty clothes that you couldn't even access the garage. The dishes would pile so high, they took over the kitchen counter. The floors (because they are wood), were soo dirty, the babies had black toes while they were cruising all over the house. NOt to mention bills, mail, planning for my class, taking care of myself (a shower), taking twins to their appointments, cooking dinners, picking up toys, putting clothes away, trash, etc. etc. It is HARD HARD HARD caring for my boys by myself.

So after some time I have come to realize that this isn't a short season in my life. We need some permanent help. My pride was knocked down and I am humbling myself to get the help that is really needed and thankfully available. So we welcome Stephanie; A student at Loma Linda, who has a BA in child development and now going for MFT. She will be with us Mon/Wed/Fri. She started last week and she was awesome! She not only was fully engaged with the kids, but she helped me with the chores. She's sweet and outgoing and i can tell has a lot to offer. After some time, I pray I can trust her enough to leave a kid or two with her so I can have more play dates out side the house, or maybe just go grab an hour of alone time, etc. Caden also needs some one on one attention these days....can't blame him.

I look fwd to this transition...I know it will decrease some of the nasty tension and gloomy feeling that often lurks in this house.

Your prayers are definitely welcomed-- trust is a big big thing for me. I want to be able to feel relaxed and comfortable while Stephanie is working with us.

wash your hands! (pls)

2010-10-06T05:04:00.001-07:00

Here we go again...flu season is peeking it's ugly face around the corner (or is he here already, lurking in my house...i don't know). I do know, that I am getting a cold and it's a huge reminder of what this season brings: antibacterial wipes, Clorox sprays, hand washing, purel all over the house (okay it's already there now, but being a bit neglected).

The boys are still susceptible to RSV, which is a serious (Can be deadly) form of a cold that really hits the respiratory system. Any cold they get can become very serious; we were told until they are 2 years old adjusted, that we need to take precautions in avoiding getting them sick. Starting this month (which reminds me I need to make that appointment) they will get their synagis shots which will help them avoid RSV.

I am going to have to be germ Nazi again. If I have guest over they need to wash their hands first thing. I hope my friends and family understand, too, when I ask them not to come over if they have any cold symptoms.

This last year we have stunned the doctors; or I should say Braxton and Xander have. Our boys never once had to go back into the hospital. This, according to the doctors, is rare. Usually the boys go back once or twice because they got a bad enough cold and it turned into pneumonia. The boys have gotten sick, but praise GOD it hasn't been anything serious. I would like year two to be the same.

Thank you for helping me with this goal :)

Caden's birthday party

2010-10-03T05:00:00.000-07:00

We had a small family gathering at our house to celebrate Caden's 2nd birthday. He was SUCH a good boy, despite the no nap and tons of sugar. You could tell he truly understood this day was about him; however, he didn't seem to take it all to his head. He definitely felt the love...that's for sure. Thank you everyone for coming and making him (and his parents) feel so special!

Here are a couple pictures from the day's celebrations.

Happy Birthday Caden!

2010-10-02T04:29:00.000-07:00

On this day, TWO years ago, you entered this world. You and mommy layed in the hospital for a little over a week trying to help you stay inside me. You really weren't suppose to be here until election day, November 4th. After a month of medicine, IV's and bed rest, God decided it was time for you to meet your mommy and daddy. The nurses were all worried that you would have to go to the NICU, because supposidly boys are weaker at birth than girls when they are born early. So the NICU nurses stood in our room to check you out. At 35 weeks, you were acting as tho you were born full term; you had all the requirements in order to go into the "regular nursery". I knew you would be okay..... After all your name means, "warrior"! :)

And that is what you have been these past two years. You have endure a lot of change in your short little life. Thankfully you have transitioned into being a big brother and having to share mommy and daddy's attention quite well. YOu definitely have some "terrible 2's" moments. But if that is what terrible twos look like, I'll take it.

here's a brief list of some of the things you are doing now:

-if you ask, "how old are you going to be?" You will say, "me 2".
-You are counting to 4
-you know all your basic colors. You can say them in sign and identify them.
-you are well on your way to knowing many of your shapes (thanks to the iphone kids apps).
-your favorite cartoon right now is Curious George. You request to watch it every morning right when you get up. (thankfully we DVR it). " Watch Curious George please," is what you say.
-you love to play with different kinds of balls. You are learning to catch and throw like a pro! (so I may be biased)
-you like to "tackle" your brothers, especially xander. You are learning to be gentle
-you are still a very picky eater. But lately you have eaten green beans and carrots! whoo hoo!
-everyone is pretty impressed with your ability to sign and use your words at such a young age. And clearly.
-during prayer time, you love to pray for people. You say, "who else". I say a name. Then I say, "who else" and you say a name. Its very cute and shows what a HUGE heart you have!

Thank you for all the wonderful memories these last two years. You are truly a gift from God and such a blessing to me and your family! I love you with all my heart, (clear past heaven!).

Happy birthday bubba!

speech, OT, PT

2010-09-27T07:13:00.000-07:00

My weeks have been consumed with appointments. A year ago, we knew this would be our life. However, I didn't really understand what that really meant or looked like. I wanted to give an update on what the therapists are saying about the boys.

Physical therapy
Braxton:
We have been working on bearing weight on his hands and knees (in preparation for crawling). He is tucking his knees under his body, but does not stay on his hands unless supported by us. Yesterday, however, I looked over at him and he was on ALL fours. IT was for a second, but I was gleaming! We will keep working on this. He just needs practice in order to strengthen his upper body.
He is moving all over the house using his own style of crawling. Yesterday he and xander were found in the shower! They are starting to act like typical twins....when they can speak, I look forward to hearing them finish each other's sentences.

Xander:
He goes to PT only 2 times a month and only for 30 min. at a time. IT's more of a check up, vs therapy sessions. He is doing everything he should be doing (and more) at 9 months adjusted. He is cruising along the furniture, standing whenever he can reach something to help him pop up, crawls like a mad man, and sits very nicely, unsupported. There's no real concern about his gross motor skills. Fine motor is coming along too...using certain grasps and picking up little baby puffs, etc. is what we are working on now.

Occupational Therapy
Braxton:
we are working on holding bottles on his own. He still wants us to hold it. He really doesn't show any interests right now, to hold it on his own. We are also working on eating chunkier foods, getting his tongue moving laterally to avoid gagging.

Xander:
Xander sees an OT weekly to work mostly on feeding issues. He does NOT like chunky food. In fact more often than not he will gag and throw up. This is directly associated with being in the hospital and intubated. Everything that was oral was negative and now he has a bad association. Also his muscles in his cheeks are tight, and he's not moving his tongue like he should. So the therapist gives us oral motor exercises to help in this area.

Speech:
Both boys are speaking as though a 3-6 month old would. They do not really babble, more of coo's. At this age (9 months adjusted), they should be saying "dada", "mama", "papa", etc. Hard consonant sounds. We are working on it.... They get a hearing test next month to rule out any hearing issues associated to their speech.

Inland Regional Center comes twice a week for 2 hours at a time to work on development in all areas. I love the teacher that comes...she is really great with the kids. They love her too!

All in all, things are moving right along. I have learned to keep my expectations high, while focusing on age appropriate goals. I often look at them as 13 months, and thats not fair to them. I need to remember that they are functioning as a 9 months old.

thanks for your continued support in our boy's lives!

Update on Braxton's eyes

2010-09-21T20:15:00.000-07:00

Braxton had a recent doctor appointment for his eyes. The first 4 weeks or so, his eyes were looking really good. The last week or so we have noticed him crossing them again. It doesn't seem as bad, but definitely noticeable. sadly....

With that said...the doctor did a thorough exam on Monday and said, that in fact, his eyes were crossing again. Before they measured 50 and now they are measuring 30. (they should be 0, straight). There is some improvement but still effecting his ability to focus clearly.

She dilated his eyes and the eye ball itself looks great. His vision is great too. He is not far sighted or near sighted. She was thinking if he were, then glasses might be helpful in fixing the crossing. So now we go back in 6-8 weeks to see what the measurements are. She is predicting another surgery. This time, instead of cutting the inside muscle, they would cut the outside muscle to compensate the previous procedure.

This is definitely discouraging news....I don't want to see him go through that surgery again. But after seeing his world light up when it was done the first time, it all seemed worth it. So if it takes another surgery for his world to "be straight" again, then I am okay with that. However, I am praying that he will NOT have to go there again. Please pray with us that the muscles will correct themselves.

....more later.....

last few weeks...

2010-09-10T05:52:00.000-07:00

braxton is standing momentarily....but still needs a lot of support. xander is walking around this thing--and when he see's a camera, he already knows to smile (caden is STILL working on this!)

First off, don't pay attention to the mess....just shows it gets used, right?! I caught my mom being Grandma of the year again....engaging all the boys in a fun activity. (where was I...out back helping phil measure the lawn. finally getting grass!)

Mr. Cool! He now will pose..but that smile is always hidden!

**mwah!**
Caden is at such a fun age...

Xander caught in the act of "exploring". You have to seriously watch him like a hawk, or he will end up hurting himself...badly. No fear, this kid!

Where are you Caden!?

Here I am!

Xander..always thinking

UPDATE:

All three boys are the same age right now. weird. (Every year this will happen; for about 6 weeks they will be the same age.) Caden's birthday is right around the corner-- and as it approaches you can see (literally) a transformation of personality. His sentences are getting longer, his reasoning/problem solving skills are getting better. Its so fun to see!
Braxton and Xander are doing well, despite a cold they have. They had their one year old check up and doctor was pleased. Both weigh 16 pounds (braxton a few ounces more), and both about 28 in long. We were told to feed them more solids. THe thing is, THEY HATE SOLIDS. Their OT is working on it with them...they gag and squirm and are not interested at all. By december they need to be on mostly solids. eek...we better hustle.
braxton's eyes are getting stronger. He is sitting more independently, but still wobbly. Xander is starting to wave and imitate movements. Very cool to see!

As for momma and daddy. I am teaching at CBU a couple times a week and lovin it! My students are super fast learners and very motivated. (except one who i caught asleep and had to call him out in front of the class). I'm not taking that personal...the class is VERY quiet. they aren't use to it. He was kissin' booty the rest of the class. funny!.

Daddy is doing well...He is keeping busy with RISE and being an awesome dad. He has done a lot of work in the backyard, trying to get it prepped and ready for the sod. (which comes in saturday, and we are all very excited to have a back yard to play in!)

Hope everyone is well!!
love,
THe carmonas!

totally GOD

2010-08-30T05:55:00.000-07:00

A friend and her two boys came over the other day. She said, "wow shawna, how do you do it. You always seem like you have such a great attitude."

I had to reassure her that that is not always the case. In fact, more often than not (definitely these last few weeks) I have been struggling big time. I find my self short tempered, lack tons of patience, and have some very selfish thoughts and actions. Life is not pleasant when you are short tempered and have 3 little kids. Nor is life fun when you have zero patience and you have 3 kids to care for.

The stress of this life God gave me has been building over time. It has effected my parenting, my ability to be a good friend, and my ability to be a good wife. Phil and I have had more arguments, and you can just feel the stress and tension in the air. it's crazy what stress does to a person/family. It literally can tear them apart...that is if you don't do something about it.

SO I chose to pray. To pray that I can get all those things; self control, patience, etc. Praying that phil and I get more time together so we can act like a married couple and not just be two people living in the same house. After awhile, the schedule we have starts to resembles the life of roomates. Having people in our life to encourage us and point us to God's truth is what will lead us in finding the ability to have patience and be slow to anger, to have self control and to be humble and gentle. Without God and these people in our lives, we are lost and we will crumble. No doubt about that.

The last couple days, specifically, I was a mess. I did NOT want this life, this life of huge responsibilities and pressure. I did NOT want to do what was right, but I wanted to run and escape from it all. I'm exhausted. I'm burnt out. The life I knew just a couple years ago seemed so much more attractive. I wanted THAT!

After myself and a few close friends have prayed these specific prayers. God showed his love and showed me how much HE is capable of if we just put ALL our trust in Him. His faithfulness this weekend allowed me to appreciate my life.

On Sunday, our pastor talked about how we will wipe out if we are not surrounded by people to encourage us. We will not make it if we pur ourselves in isolation. With Stress and responsiblities we tend to get busy and all that God called us to do gets put on the back burner. With that, the people we love and the things we care about also get put on the back burner. Slowly our life revolves around us and the focus is lost.

Already, hours later, I am seeing God work; my attitude has shifted and our house isn't clouded with that ugly fog of stress. Don't get me wrong...this life is stressful and we will continue to have those weak moments. Probably more often that we life. But after this weekend, I am determined to seek HIM first and allow HIM to direct my steps. Otherwise I am pushed so far off course that everyone around me is effected. And that is not love.

Braxton's eye surgery

2010-08-28T06:22:00.000-07:00

This picture shows how braxton's eyes are most of the day. There will be times he straightens one, but as you can see they are very crossed. The surgery was definitely needed to allow him to see in focus.

PREP BEFORE SURGERY

MORNING AFTER SURGERY

much better already! he was VERY droggy the day of and the day after. He is attempting a smile here :)

As most of you know, braxton had his eye surgery last Thursday (8/26/10). From the pictures above you can see that his eyes are already straight! The doctor told us that they will wonder around for a bit, until the muscle of the eye settles back into place. She also said that there is a good chance he will need patching and/or glasses up until he is 8 years old. The biggest concern is that they will have to go back in and surgically correct them.
We see the doctor this week and then in 6 weeks. This week she will get a good idea if the surgery worked. But in 6 weeks, once the stitches and swelling and everything goes away, we will have a better idea.

He is not in to much pain anymore. Seems happier. We do give him some ointment to help with the risk of infection and for pain.

He is slowly tracking people as they walk by. Yesterday I saw him watch caden as caden played next to him. It was soo amazing. He's not as verbal the last few days. I think he is just getting us to his "new world". Things must look so different. I can't even imagine.

He still appears to have nystagmus, which is an involuntary rhythmic shaking of his eyes. THe doctor said this surgery could help it. We'll see. He doesn't do it all the time, but every once in a while (throughout the day), you'll see him look down at his nose and then his eyes jitter. Not sure what this means for the future.

Thank you for praying during this time!! Like I said...we still have more hurdles to jump and more challenges on the way. Your prayers and support are always welcomed :)

Update on the boys development

2010-08-19T05:46:00.000-07:00

Yesterday Phil and I took Braxton and Xander to their 8 month follow up appointment at the high risk infant clinic. To our surprise, the doctor that took care of them in the NICU was there. This is the doctor that we wanted to see at their 4 month check up but she was out of town. She is the doctor that I really liked at first...requested her often. But then she made that recommendation to end support for xander and my feelings for her changed a bit. (how could they not).

We walked down the hall, and she was talking to another doctor and she looked at us with HUGE eyes and a great big smile. She hadn't really seen the twins yet, but she KNEW they looked good. Later she tells us how good they really look.

So here's a recap of all we took in yesterday. It's a lot...you may get tired after reading this. i know I did...am.

we'll start with their size. Both boys are the same weight, 15.6 pounds. When plotting them on the growth chart, they are at the 5th percentile for babies 8 months old. THis went down form last visit. They are not making the curve they want to see. So we will go to a GI specialist to see what they would like to do. More than likely, they will just increase the calories for both of them. That is what she did today. They are on 26 cal. and they can eventually go up to 30 if need be. When they are 1 year corrected (december) they will start taking pedia sure.

head:
braxton's head circumference is smaller than xander's. In fact the doctor was wanting braxton's to be bigger. He had a cerebellum bleed while in the hospital, and this could be a reason for the size of his head...or it just could be that he needs to grow more. once we give him more calories and he's gaining weigh and growing, his head will proportionately grow with him. (that is our prayer).

along with the cerebellum bleed..this could also be why he is not as coordinated as xander. Braxton is not sitting up or crawling yet. But we found out that crawling is about an 8 month milestone, and we are just at 8 months. Braxton is pivoting from left to right while on his belly, so that is a good sign.

eyes:
braxton, as a lot of you know, will have surgery next thursday (26th). We will go this monday to the anaesthesiologist to make sure he can have it at out patient and not have to be in the hospital over night.
we are ready for this surgery...i know he will be such a different kid.
xander needs to get the cyst on the side of his eye/head taken off. Now that he is mobile he's more likely to fall on it and that could be dangerous. this doctor was on duty when xander coded from sedation in the hospital, and seems to think that he will not have a problem because he is much healthier. waiting for that referral.

ears:
this was the most shocking to me. The doctor was really concerned with their hearing. This whole time I have thought (and could still be right), they had great hearing. Well they did some tests using random noise makers and they both didn't respond to them like they should. That, and my history of having hearing loss, plus their prematurity are all weighing against them. The biggest concern was that their "speech" is not where it should be. They are making noises, but the noises they are making are that of a 3-6 month old. They should be making strong consonant sounds like, "ba ba" "da da", etc.
So they will be getting a hearing test that requires them to be sedated..it's called the ABR. I am now very curious (not worried) what they find. waiting on that referral.
they will also be getting speech therapy... again...i have to follow up on this to make sure the authorization went through.

"down there" :)
braxton has some fluid build up, that looked like a hernia near his testicles. I guess this is common among preemies. Turns out it's not a hernia but will need to see a urologist to follow up on it. another call to add to my list.....

Dr. houghlan was soo pleased with the boys. I also sensed some amazement and surprise when she found out xander got off oxygen soo quickly. She was very optimistic about braxton as well. She said with constant therapy at home and in the clinic, she can see him improving with his muscle tone. He still is tight but I asked about the cp label, and she said that is not what she would do at this point in time. I need to massage and stretch him out a lot more than I do. She is going to try and get us more in home services to avoid me having to drive around the county. (doing that with three young children is very hard).

So I think that is it...we will go back in November to follow up with all this stuff.

over all I was pleased with the visit.... Keeping up with their appointments and specialist is a chore. It's a job all in itself. Its very overwhelming to say the least, but it gets done. some how...it does.

till next time.

Turning ONE

2010-08-18T06:32:00.000-07:00

A year ago today, braxton and xander were born. At 1 pm phil rushed me to the hospital, as it was obvious I quickly went into active labor, having contractions a minute apart. The nurses and doctors thought about giving me an IV to stop these contractions, but it was too late. One of the sacs was already showing. It was time.
At 3:19pm and 3:20, Braxton and Xander entered this world via emergency c-section. They were immediately intubated because they were barely breathing on their own. They were quickly wheeled by me so I could get a glimpse of my new sons.
At this moment...and months to come I would be walking through life completely numb and unaware of what just happened to me and my family. My sons were in critical condition...every minute of every day they could have been taken from us.
By God's grace, a year later I sit here caring for three energetic and loving little boys.

Doctors told us that their quality of life did not look good. Infact, when the boys were just 6 weeks old, they suggested that we end support for xander. Xander's lungs were way under developed and he had a brain bleed that was pressing against the brain tissue. They were certain he would need a trach to help him breathe for the rest of his life, they have eye surgery for ROP, and a shunt to help the swelling in his brain. .....
After 5 months in the hospital (arriving home on jan 12, 2010), Xander came home without a trach and without a shunt, and sees perfectly! GOD IS GOOD.

The doctors never insisted on us ending Braxton's life, but did say that life would consist of 24 hour nurses, g-tubes for feedings, brain shunts for the bleeding, and surgery for ROP. Braxton came home on January 2, 2010 without having ROP surgery, without any brain surgeries, and without a G-tube sticking out of his belling.

We would not be able to make it if it weren't for all the support and prayers throughout this journey. Our journey is not nearly over; but I am beginning to see a glimmer of light at the end of the tunnel. It is a speck of brightness, but nevertheless it is there.

Without God, my husband, my awesome family and friends, I would be lost. Literally.

Look out for the next blog about today's developmental clinic appointment. This journey does not stop, nor do we slow down. there is a list of appointments and procedures to be made. TBC....

Thanks again for keeping up with our family and continuing to pray.

Grandma of the YEAR

2010-08-13T09:10:00.000-07:00

My mom should get the "grandma of the year" award....

I tell her everyday that I appreciate her. And I tell her all the time how much I love her. But I wish I could do more to really show my gratitude.

My mom, or GG as caden calls her, has committed to helping our family a few times a week. This job isn't an easy one--and she does it with a smile.

She always leaves my house with the kitchen beaming, the playroom picked up, clothes washed/folded and put away, while also spending quality time with her grandsons. I'm convinced she is the baby whisperer. She can get the babies to sleep faster than anyone I know. I have learned a lot from my mom through out the years. But more recently, she has really shown me what God's love looks like. She has such a sweet, gentle and loving heart. I aspire to be just like her!

i love you mom. And thank you again for all that you do for us!

Pre-op appointment

2010-08-13T06:14:00.001-07:00

I took Braxton to his pre-op appointment yesterday. His eyes have not improved and the measurements have been consistent at every appointment. This is good, in order to make an accurate correction in surgery. The doctor spent a lot of time with us, explaining the exact procedure that she will do, the recovery time, etc.

The process will take an hour and a half. She will cut the inner eye muscle to weaken it so they will not be forced inward (that's the goal). After a week the swelling and redness should be gone and we should have an idea if the surgery was a success or not. It won't be till about 6 weeks that we really know; when the eyes are completely healed.

She told me that sometimes in 2 or 3 years, the eyes go back and start the old habits. At which point, we'd have to re-operate.

The week of the appointment we have a meeting with the anaesthesiologist to determine if Braxton is healthy enough for out patient. If they feel he needs to be in the hospital for the surgery, then we post pone this date and find a new one. I don't think he'd need hospital stay. His lungs are way healthier than xander and no deathly illnesses since he's been home. But we'll see what they have to say.

Thank you for all your prayers during this time. I am praying that his eyes are completely restored and that this will help his over all development.

approaching ONE

2010-08-07T05:40:00.000-07:00

Braxton and Xander are approaching their first birthday (aug. 18th). With this, so much emotion and thoughts flood my mind. Questions I ponder every day, " will I be a mom to a special needs child?" "Will they be delayed in speech as everyone say they will?" " will my life consist of doctors appointments and therapy sessions forever?" and of course....and most unfortunately, I still have those "what if" thoughts that flood my mind. Just yesterday I was so consumed with the thoughts of me showering when I probably should not have been, while on such strict bed rest. How vain I was...am.

In any case...I try hard, with a lot of prayer and encouragement from friends, to not take myself to those questions and thoughts. The truth of the matter is....GOD is still in control and HE brought us here. The fact that HE orchestrated all these events in His timely manner, has helped comfort me during those weak moments.

The boys have an evaluation for development on the day of their birthday. They will determine where they are at age wise, for gross/fine motor skills, social emotional development, cognitive skills, etc. I feel like I can already predict some of what they will say. After all, I live it everyday. I don't think I need a degree to say, "braxton still has some low tone issues". He still isn't crawling and sitting on his own. I know this will be some what of a "red flag" for them. So I'm already preparing myself to hear all the clinical jargon (the sitting up is a 7 month old skill. They are now 8 months adjusted). So theoretically, he is not that far behind. But we'll see what the degree holders have to say. I predict they will be blown away by xander. He, according to many "degree holders" is ahead of his adjusted age. I always say he has a 12 month old brain with a body that functions as an 8 month old. This gets him in trouble as he tries to preform like a one year old; pulling himself up on the couch, trying to stand on his own, crawling in turbo speed. He gets a lot of bumps and bruises because he's still VERY unstable. Gives me a major mental and physical workout daily. I can't wait till he walks so I can have a little more peace throughout the day.

A few prayer requests:
- braxton has eye surgery on Aug 26th. It's out patient and should only take an hour or so. Please, if you will pray for success of the surgery, pray for the doctor, and pray that Braxton has minimal to NO pain through it all. (maybe a prayer for the parents too ) ;) recovery is 6 weeks. He will have blood shot eyes and swollen for a little while. After 6 weeks we will know if the surgery worked.

-Braxton's over all development. As mentioned above, he has a more significant delay than xander. To the point that I am now a bit concerned and trying to get him more therapy to try and close these gaps. However, I try not to be a naive person, and realize that these delays could be directly correlated to the brain bleeds he had. Even if this is the case, I know our God is mighty and can do all things. So please, pray with us that all neurological damage that might have taken place is completely reversed. And if this isn't God's will, and Braxton will have some delays, please pray that God would give us peace and understanding (and joy) to handle it all.

This last year was a year I will never forget, that's for sure. God gave us a lot of responsibility and with that a ton of pressure, and I know He's not done. This next year, i can foresee our plate being just as full. We will have some of the same challenges, but presented with different ones as well. This, creating a lot of the same stress and pressure. Again, I'm so glad I don't have to walk this path alone.

THANK YOU ALL who have helped serve, love, and pray for our family. You have helped make this testimony what it is. Our boys, braxton and xander, are walking examples of GOd's love and grace. They have a big role to play....I CAN NOT wait to see what else God has up his sleeve for the Carmona family.

Regional center battles

2010-08-06T15:18:00.000-07:00

The boys have been in, what I like to call, "the system" for 3 months now. Regional center has been seeing them once a week for an hour each. To refresh memories, An early intervention teacher comes and works with them; they work on sensory integration, gross/fine motor skills, etc. It's been great...
However, after learning a little more about my rights as a parent I became aware that the boys could be getting so much more. Immediately I was on the phone and was able to get both boys an extra hour a week! This means they will have the teacher come and work with them two times a week for an hour each. I also insisted on an OT/PT consult come to the house to evaluate them. As we have been waiting on insurance to pick them up, I didn't want to delay them from getting those services. The obstacle I am facing here, is they are trying to send me to Rancho Bernardo of all place, to get them their therapy. This is ridiculous to me, because I know they have in home therapist that travel around the county. We are waiting for approval on this.... of course it's all about money. (i also learned that the Inland Empire Regional center is the worst off, financially, compared to the rest of the state). lucky us... Means we gotta fight even harder.

heart attack!

2010-07-26T14:26:00.000-07:00

xander has been busy busy busy. The moment he wakes up, he begins his exploration around the house. Yesterday he decided to try something new.

He did this all by himself (with me VERY close by). I have to now watch him like a hawk because he finds himself in some sketchy situations. Today he tried to climb into a planter pot. Just now he got to the couch and pulled himself up to his knees. It will only be a matter of days before he is pulling to a standing position. wow! Go Xander!

playmate, thereapy, thoughts....

2010-07-19T07:34:00.001-07:00

I have sat in amazement the last couple days... Caden has left my side for more than 10 minutes to play. without me. amazing! I look over and he's interacting with xander and braxton. Sadly, more xander than braxton; I will hear him say, "no xander" when he tries to get something caden has. Or I will see him "attempt" to read him a story. VERY cute.

It sort of breaks my heart, though, that I have to remind caden to interact with Braxton. I can understand why caden is playing with xander more; xander is crawling and exploring. Braxton still lays there. in one position. He will move from tummy to back, but not like his brother. Braxton will play with his toys and mouth them. He will babble and giggle if someone engages with him. But he's just not like his brother. YET!

Caden is my little shadow. It's not easy... I wonder, is it his toys? are they are too babyish. is he ready for more? Have I not taught him to play independently? or is he just plain bored. Well I think a little of all that. I'm excited when the twins can be his live in playmate, so when we can't leave the house, they have one another.

Braxton goes for his first physical therapy appt. tmw. I'm curious to see what she says...I'm ready for some of these delays he's showing to be caught up. (baby reflexes are still present, etc.)
He has OT next week-- I pray for good therapist, and I also pray that insurance covers all the co-pays. (that can get expensive!).

I'm left in my thoughts...so much more in my head, but caden is insisting on my attention. nothing new. :)

update on the boys

2010-07-14T10:39:00.002-07:00

I am having a rare moment when all three boys are asleep. I gotta type fast because this won't last long.

I wanted to brag a moment....Xander is officially crawling! I do see the "commando" style crawl here and there, but for the most part he is crawling on all fours. He likes to stand on his feet while touching the ground. Picture a kid doing a "bear crawl". It's quite cute, and makes me think he is not far from pulling himself up into a standing position.

With that said, he still isn't sitting by himself. This is strange to me, because I always thought you sit independently before you crawl.

Braxton is not crawling yet. He is rolling to places. He likes to lay on his tummy and do the super man position. We are working on him baring more weigh on his arms. He, too, isn't sitting by himself yet.

Both boys are eating 2 servings of solids a day and doing really well drinking their milk. They will drink between 4-5 ounces a feeding (every 3-4 hours). The pediatrician still thinks they are not gaining quick enough so we have an evaluation with a GI specialist. I am suspecting the OT will be working with xander on his ability to eat solids. He eats them, but tends to have some sensory issues with the textures. We'll see...maybe he just doesn't like the taste. Braxton cries if you don't shovel it in his mouth quick enough. :)

They both have their bottom two teeth and both are getting their top two. One has poked through and the other one is coming.

Ped. said the boys are definitely identical and we shouldn't question it anymore. It's very rare to have one placenta and be fraternal.

Personalities are in full force. Xander is a busy body. Wants everything and goes everywhere. Braxton LOVES to be snuggled and tickled. He laughs hard. he is smiling a lot more and so much more interactive. The boys love to be by each other.

Currently the boys are sick. again. Seems their immune system is really weak. Praying caden doesn't get it (bronchitis and ear infection). Nebulizer is out again--

Caden is such a good big brother. He is sharing his toys, soothes the babies when they cry, "fetches" diapers. When he wakes up in the morning first thing he talks about is his brothers, wondering if they are awake or asleep. He'll sign, "xadner. sleep?" then he'll put his finger by his mouth and say, "shhh". knowing that's exactly what I'm about to say next. Very cute. Smart boy too...knows most of his shapes and colors. We are now going to work on potty training. He did a number 2 in the potty yesterday!

carlsbad "vacation"

2010-07-03T05:54:00.000-07:00

Have you ever gone to the beach but didn't actually GO to the beach? I mean...you were at the beach but didn't put your toes in the sand or take a swim in the ocean? Well, that would describe our latest attempt at a vacation.

We booked a condo at the beach in San Diego a year in advance; 4th of July weekend. (in order to secure the spot you have to plan a year in advance). we plan to go some where local in case I was pregnant or had a little baby. Good thing we didn't book it out of state-- 3 little ones in hand would not have been the greatest idea.

So our "vacation" rolls around and we arrive at the beach. It's COLD. I'm talking 65 degrees and no sun in sight. For the first few days this did not bother me. We were coming from sunny and hot Riverside. So it was a refreshing change; it actually felt like we were further away from home than we really were. But by the 4th day, and no sign of the sun, it was getting a bit annoying. Typically we would have gone down to the sand regardless of the weather--but the twins got a cold while we were there. This means we were stuck in doors, because the cold wind is not good for their lungs.

Even though we didn't touch the sand, or feel the water, or build sand castles....we were together. Sounds corny, but Phil and I don't see much of each other. We are on totally opposite schedules. So to be in the same room for 7 days straight was a huge treat. We had friends and family come in and out to stay in the 2nd bedroom and enjoy the place with us. So we played tons of catch phrase (girls rocked at it by the way. don't let phil tell you otherwise). Phil and I tried to play ping pong with the three kids. That didn't work too well. but it was a good effort. We did sneak away for a few to play by ourselves-- that was fun.

All in all...this "vacation". or what I like to call a trip, was not what I expected. I did expect it to be hard-- we had 3 little ones with us and we were out of our element. But did not expect to be stuck mostly in doors. God was teaching us patience....and contentment. Still working on those....

at the wild animal park...scuuured of the deer.

family shot at the Wild Animal Park

The play ground at the resort (notice the long pants and sweat shirt)

mini golf at the resort

The boys seem to gravitate towards one another. When we leave they are far apart. When we return (seconds later) they are side by side. It is quite cute. They are starting to be very aware of one another-- and with that, they are very aware of what each other have. And they want it!

Father's Day pics

2010-06-29T07:11:00.001-07:00

xander, right before he crawled for the first time

caden and his friend anthony

mr. cool

He loved the ocean as much as his momma

phil and his mom, feeding the boys (they didn't make us heat the milk!)

taking it all in...

We had such a great time in La Jolla...caden loved every second of it. Phil was walking around so proud of his little boys. He is the best dad...It was a great Father's day!

remembering "Grams"

2010-06-29T06:09:00.000-07:00

My aunt making xander laugh with her silly antics.

braxton is fascinated with simba (my old dog whom now resides with my mom due to her mischievous ways)

My cousins practicing their "sexy face". Keep practicing girls...

preparing for the shot...clearly not ready.

two cousins holding my babies. So helpful!!

smiling...as usual.

my cousin doing what she does best, make everyone laugh.

My uncles, my dad's brothers.

below:
The boys (friend, step bro., and phil) just chillin after lunch.
all the cousin (that were in town anyway)
more cousins with my boys

The last two week have been consumed with so many things. One being my sick grandma. I learned she had a stroke and I immediately started going over to her place (in Laguna Niguel) a few times a week. Doing this with three young boys wasn't the easiest. But, I did it! (more about that later).

My grandma passed away on Tuesday, June 22nd. Her funeral was on Friday the 25th. It was not a speedy death; the only kind of death I'm familiar with. My dad's death was immediate. No time to prepare. It happened in a matter of hours. My grandma....she lay there, speechless and limp. For a week...Well it wasn't always like that.

My grandma (often called "grams") was one of the most articulate, intelligent women around. She was known for reading the newspaper daily, Time magazine was always by her bedside, and it wasn't surprising if she had just finished reading one of her favorirte books for the second time around. She had so much to offer-- and she did.

Of course there's mixed emotions going through my head. One, is quite selfish. I admit. My grandma was my connection to my dad. (She was his mom). Seeing my grandma allowed me to still "see" my dad. She told me stories, she brought back memories, all at a time when I felt they might have been fading.
My grandma is my connection to my uncles (my dad's 5 brothers). My grandma is the connection to my cousins. I fear the loss of these people now that my grams is gone. However, at the funeral my uncle assured me and the rest of the family, while giving his speech, that this family is grounded and rooted together because of her and will not be and cannot be destroy, again because of her. That was her mission, to keep the family together. We all made a vow to do that. I feel confident that that is exactly what we will do.
We already have a family reunion planned for next summer. We will be going to cannon beach, oregon. For two purposes. One, the main reason, to spread her ashes. This was her favorite spot and her wishes. Second, for the Hydes to reunite and do what we do best. party! I can NOT wait!

The reception after the funeral went perfectly. Everyone seemed at peace; they all seemed to enjoy their time and reflect on all the memories they have had with my grandma. She will definitely be missed, but she is in a WAY better place. I believe that 100%.

As for traveling these last two weeks with my boys....it has brought me over a huge hump. It's scary to load up two car seats, pack bags for three kids (trying not to forget anything, and believe me I have. Including bottles!!). Who forgets bottles. anyway, it was and is an adventure, but I am learning to really enjoy it. The boys like it too. Its also reassuring that at the end of my destination there are other hands to help. I have yet to travel alone, with zero help. That might be quite some time! years maybe?!?

I leave you with my grandma's favorite verse:

Psalm 23

A psalm of David.

¹ The LORD is my shepherd, I shall not be in want.

² He makes me lie down in green pastures,
he leads me beside quiet waters,

³ he restores my soul.
He guides me in paths of righteousness
for his name's sake.

⁴ Even though I walk
through the valley of the shadow of death, ^a]">[a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

⁵ You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

⁶ Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

update on eyes

2010-06-28T08:48:00.000-07:00

after going to the doctor last week, it was apparent that Braxton's eyes have not gotten better. Even tho I have noticed the right eye focusing more, when the doctor did the measurements there is not much improvement. Therefore, we went ahead and scheduled the appointment. The date right now is set for august 26th. There might be an opening on Aug. 5th, which I am hoping for. I am ready for this to be over with and be able to see Braxton interacting and not getting so frustrated.

Of course, during this time there are mixed emotions; I mean it IS a surgery. He will be put under and it will take about 1.5 hours. The doctor is very good and I trust her 100%. However, your prayers during this time are definitely appreciated!

We will go back a week before surgery to check one more time before the surgery.

More to come....thanks for your continued prayers!

boys swim for the 1st time

2010-06-20T07:41:00.000-07:00

The three boys and I went to my cousins house to help her celebrate her birthday (unfortunately daddy had to work).

The twins went "swimming" for the first time. They weren't sure at first, but then seemed to really like it. If the water was a little warmer I think it would have even been that much better. Braxton looked soo relaxed; almost falling asleep at one point.

Thank you guys for helping me with the three boys! Couldn't have had so much fun without your help!

Happy birthday kirst! I love you lots!

eyes

2010-06-15T06:00:00.000-07:00

Mr. Braxton has his eye appointment on monday (june 21st). This is the appointment where the doctor will determine if he needs the corrective surgery or not. His eyes, miraculously, have gotten a lot better in the last few weeks. However, he still does not focus for long periods of time. His eyes play a huge role in his social skills. He has moments where he is so giggly and interactive, but more often than not, I find him playing with his toes, toys or just talking to himself. Once his eyes are corrected, it is going to be amazing to see the transformation take place; his true [playful and bubbly] personality will shine.

Please be praying for the doctors that God gives them wisdom and just for a complete healing so he would not have to undergo this surgery.

lesson learned

2010-06-14T08:43:00.000-07:00

105 temperatures
green snot
2am diarrhea
throw up
whining
crying
wailing
dehydration
antibiotics
thermometer
saline
humidifier
sick
sick
sick

The last few weeks have been MISERABLE. Miserable for my babies as they were sick, miserable for me as a mom trying to handle three sick babies, and miserable for GOD.

I was reminded these last few weeks that GOD gave me these babies and this life and he could easily take it away. Not that I think He would do such, but He definitely put me under so much pressure and stress that all I had was to turn to Him for patience and guidance and strength. Once I was under that realization, He didn't put on the breaks, but pushed me that much further. I was then sick in bed for 3 days with strep and ear infections. I might have yelled out loud, " OKAY GOD I GET IT!"

SO there it was...plain and clear. God's lesson to me.
Despite the busy life I lead, I have no excuse to be doing it on my own. I have been absent from his presence. I have not been reading, praying, or acknowledging anything He has done for me. I have stepped in the drivers seat and took off full speed. CLEARLY, in the wrong direction.

I am SO thankful that I do not have to drive, and I can sit back and be passenger--now I just have to learn how to not be a back seat driver.

Thank you Lord for these last couple weeks. I can [now] honestly appreciate what you did. Sorry for my stubborn heart.

sick babies

2010-06-04T04:25:00.000-07:00

our sick day

went for a walk to the park. This was before I knew he was so sick.

He was so cranky, I thought getting him out of the house would make him happier and feel better.

my mom is a life saver!

The two boys "playing" together.

wow...being a mom is tough. Being a mom to 3 sick babies is even tougher! THank GOD my mom was here this week to help me. Yesterday was the breaking point. Caden's temperature reached 104.4. I was at the pharmacy getting braxton's medicine (for PINK EYE!) when my mom called me. I immediately came home, thinking he may need to go to urgent care. After medicine and a bath his temp went down. HE was still very lethargic and didn't move from the couch for hours, sleeping off and on.

Meanwhile, braxton's nose is running, he's coughing and his eye is almost swollen shut from the pink eye. Xander's cough makes him gag, and i freeze while looking at him, making sure he is able to take a breathe. We have been giving 3-4 breathing treatments a day for him, but I'm not certain how much it's helping. He's not letting me put the mask on him, and he doesn't let the mouth piece really stay in his mouth. So I simply hold it near his mouth and nose. Making it a game allows me to sit there with it for 10 minutes.

praying for a better day today.

First taste of solids!

2010-06-02T19:10:00.000-07:00

The boys have met another milestone; they had their first taste of rice cereal. Most of it went on their bibs, but nevertheless, they got a taste.

Preemies often need help from an OT (occupational therapy), when they begin eating solids. Often times they are not coordinated enough or they have an adverse reaction to the textures of the food/spoon. Just like they had to learn how to drink from a bottle, it might take them longer to learn the concept of eating from a spoon. Buuut, these are pretty special babies and I have a feeling it won't take them too long :)

As you can see in the first picture, caden is missing. I chose to approach this task while he was napping. Soon enough I will have all three sitting there. I better keep the broom in the kitchen now!

This time is bitter sweet. Sweet, in that they are getting bigger and strong enough to sit and eat solids. Bitter....it's going to be that much harder to feed them; new routine will need to be put in place and anticipated frustrations with the learning process.

With that said, though, I'm looking forward to tomorrows feedings!

xander

2010-05-30T05:48:00.000-07:00

just a candid shot of Xander I had to share. Too cute!

OT evaluation

2010-05-30T05:37:00.001-07:00

The boys had their first OT appointment. The first one is simply to evaluate the need for the service and to set some lose goals.

Braxton:
Braxton still has some reflexes that at 5 months (adjusted) he should not have. When he kicks his legs, both legs kick at the same time. If you put one leg bent, the other leg bends. His brain doesn't allowed him to work his body parts independent of each other. She said that this is something we can train his brain to do. So when he is pushing out both legs, we are to hold one leg steady. Same with his arms.

Up until a week ago, he wasn't consistently rolling from his tummy to his back. now I find him on the other side of the room. So this isn't an "issue" any longer.

He still stands on his toes when you put him in a standing position. She showed us what to do to, again, train his body/brain to not do this. The brain has a pattern that supposedly we can break.

Some of the behaviors that he was showing, was confusing to her, because she didn't know if that was developmental or from the nystagmus and strabismus http://www.visionww.org/drswindsor-nystagmus.htm
(the crossing of the eyes and the jerky eye movement). He goes back to doc on june 21 for his eyes. She wants to see him weekly.

xander:
She wasn't as concerned with Xander. Not that she was overly concerned with braxton, but xadner wasn't showing the same immature behaviors. Xadner is pretty age appropriate (for adjusted age). With him, we are working on sitting by himself and raising his body on his hands (during tummy time).

She thinks seeing him 2 times a month would be sufficient. I was pleased to hear that.

With that said, OT and PT will be put on hold for a week or so due to insurance issues. We are going to start going to Loma Linda outpatient rehab for their therapy. The facility closer to home didn't take the boys medical, therefore the weekly payment was going to be ridiculous.

c/t scan complete

2010-05-25T07:18:00.000-07:00

I can breathe...the scan is over. It started out rough, when the doctor came out and started to dismiss the plan that the nurse and I had made days before. The plan was to feed xander after he was all worked up from the IV, and he'd fall asleep and they could do the test without sedating him or putting him under anesthesia.

The nurse was absolutely awesome! She was not worried about the doctors first reaction, because she assured me that she was the one doing this for 14 years, not the resident. Basically she was saying he didn't know crap and she did (which was true!).

Needless to say, xander slept through it all! PTL! Now we wait for the results.

c/t scan

2010-05-23T13:52:00.000-07:00

xander has a c/t scan tmw. The scan is for the cyst that is growing near his eye. They want to make sure it is just a cyst and that its not growing towards the brain or veins aren't making a home within it. I'm nervous. For good reason.

two weeks or so before xander came home from the hospital, he had a MRI done. While he was on the table, sedated, he coded. What this means is his little heart stopped. He turned blue. Thankfully one of my primary nurses was with him, along with an RT and the doctor was right out the door. The nurse immediately did chest compressions, and his heart rate finally went up.

Was it because he was so weak? He was still on oxygen....no one really knows. but to play it safe, we are not doing any sedation tmw morning during the exam. He will go in super hungry (and cranky) and I'll feed him while they do the test. The part I'm going to hate is the fact he has to have an IV (for contrast). :( My cousin is coming with me... (thanks cuz).

praying for God's hand to be on my little guy.

trip to great grandma's house

2010-05-22T16:24:00.001-07:00

I got up enough courage to pack up the kids (and all the cargo) and head to great grandma's house (my grandma).

It was a surprise. My grandma didn't know we were coming. She is on bed rest and not doing so great. Needless to say, she was thrilled when the troops rolled in.

After, we went to the Spectrum and rode the merry go round. Caden loved it. Felt like disneyland to him. (kid doesn't get out much!) :)

miss the NICU

2010-05-20T05:01:00.000-07:00

I never understood my feelings..and didn't think they were normal. That is, until this morning when I was on my preemie support website (www.inspire.com) and read about other moms who are having the same feelings as I did....do.

If you have never experienced what I have gone through, having a second home called the NICU, then you probably don't understand why I would miss it. Infact you would probably think it's pretty insane. How could anyone miss such a scary place.

But the truth is, as soon as I brought the boys home there was a sense of sadness. My life, for almost five months, of me going to the hospital, was abruptly stopping. Granted it was only for 2-3 hours a day, but those few hours allowed me to develop relationships with the nurses and the staff. Everyday I felt as though I was visiting my family. They went through everything with me. They grieved when we grieved and they rejoiced with us, when the boys reached different milestones. Two of my nurses have already come to visit us a couple times. They will be life time friends and we will be forever grateful for all they did for our little miracles.

It's nice to know that I am not alone when I still find myself thinking and missing the NICU. It's a place that will change your life. The things we saw and heard and felt will forever be engraved in my mind.

Interestingly enough, I still have the NICU phone number on speed dial on my phone (since we called multiple times a day). I see it there everyday...but I have yet to erase it. not sure why... perhaps that's another blog post...

Our first outing

2010-05-14T05:55:00.001-07:00

The boys, and I mean ALL the boys, had their first outing yesterday. We went (with help of course) to babies r us to buy them their crib mattress's. I had one cart with caden and a car seat and then one baby was in the other cart. Needless to say, It was a sight. And surprisingly, the babies did really well. That is until they got hungry. We made a bit of a scene with the loud cries--got a few questions and a few comments, "wow, you are a busy mom!" " oh my, how old is your oldest. wow, you are a busy woman!" (i get that a lot, the busy mom part). It's funny, I would be a rich women if I had a quarter for every time I heard that.
I won't lie. I was nervous to do this errand. But after the success, the world will be exposed to the chaos much more often (with my helpers of course). Okay, so maybe chaos is a little overstated.

Good job boys!

Caden!

2010-05-11T08:00:00.000-07:00

Love this kid!

A trip to Holland

2010-05-09T06:36:00.000-07:00

Having a child born prematurely
is like planning a trip to Italy, getting of a plane and landing in Holland.

"But I don't know anything about Holland!I don't want to stay!" you say, but you do stay.

You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.

The important thing is that you are not in a filthy, plague infested slum full of pestilence and famine.

You are simply in a different place than you had planned.

it's slower paced than Italy, less flashy than Italy, but after you catch your breath, you

begin to discover that Holland has windmills.

Holland has tulips.Holland has Rembrandts.'

But everyone you know is busy coming and going from Italy.

They're all bragging about what a great time they had there, and for the rest of your life you will say, "Yes, that's what I had planned."

The pain of that will never go away. you have to accept that pain because the loss of that dream is a very significant loss.

but if you spend your life mourning the fact that you didn't go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.

author: Carol Turkington

Happy Mother's Day! This made me really appreciate what I have and where I am at. IT's a great perspective to have when your plans don't go your way. My life isn't what I thought it would be. My dreams as a mom have changed. But everyday I learn to appreciate my journey and thank God more and more for the path he is taking me on. I grieve my pregnancy on a regular basis. I never really felt my boys play in my belly. The traumatic birth, the exhausting NICU visits, the wires, the beeps, the scares, All which I never wanted. Through it all, I have grown. I have learned so much. I am more patient. More loving. More understanding. I am a work in progress... learning to be even more patient, loving and understanding.

convertible

2010-05-08T17:44:00.000-07:00

I was driving behind a red convertible today. For about 5 miles I watched as the two young girls danced and sang to their loud music and laughed as their hair was bouncing in the wind. We were in traffic...but that didn't seem to bother them. They were in a convertible. With the top down! It looked as though they were driving the the beach. hmm...must be nice.

I couldn't help but feel envious. jealous. It reminded me of myself...it was only a couple years ago I was doing the same thing. Made me really miss those days.

Then I get home and see my baby boys. As soon as I walk in the room (the second xander sees me) he smiles so big it brings me to laughter. I pick him up and playfully kiss him. He wouldn't stop giggling out loud. He laughed so hard that his little shoulders bounced up and down. I laughed.

I quickly forget about my jealous heart and thanked God for the life I lead now. Not to long from now, my boys and I will be laughing and dancing to our own loud music, as we drive to the beach. :)

therapy pictures

2010-05-07T16:48:00.001-07:00

Sensory integration

They weren't too sure at first...then really enjoyed the rice.

caden enjoyed it even more!

bye bye BPD clinic

2010-05-07T16:40:00.000-07:00

The last words I heard after leaving this week's appointment was, "have a nice life". Mr xander is cleared from the BPD clinic. [Bronchopulmonary dysplasia involves abnormal development of lung tissue. It is characterized by inflammation and scarring in the lungs. It develops most often in premature babies, who are born with underdeveloped lungs.] After going to the BPD clinic every month for 4 months, they feel he is doing well enough to be "discharged" from their services. Yes, his lungs are still fragile and still developing, but he does not need to see the pulmonary specialist anymore; his pediatrician can take care of all his health needs from this point on.

He is weighing in at 13 pounds...the dietitian thought that he was making good progress, however, he is still close to following off the growth charts. So she has decided to increase his calorie intake to 27 (My little chunker, braxton, is still at 22).

All in all, This was great news!!

A Loud and BUSY day

2010-05-04T17:43:00.000-07:00

At last...I sit on my bed. Silence. Solitude. And it's only 5:45pm. Mr. Mac and Miss Cabernet Sauvigon accompany me, as I try to break away from the madness (and I mean that in all it's entirety).

My day started out good...I got plenty of sleep, got up to feed the babies around 4:30 and even managed to do a workout video. I vacuumed and even did a load of laundry. And then it starts.

Dad leaves for work today at 7am, caden is cranky and bored. AND Sick. green snot dripping down his nose is not a pretty sight. I quickly tell him (in the most enthusiastic voice I can conjure up), "why don't you go outside and play with your bubbles". NO more persuading needed after he heard the word, bubbles. Meanwhile, while I'm rocking (more like jolting because that's what he likes) braxton to soothe him, and making goo goo, gaa gaa faces (it's no wonder I am no longer fluent in English.) at xander to keep him from screeching, caden has quietly come back in the house and managed to pour a bottle of water all over the floor. I get it cleaned up. When I'm putting the towel back in the dirty clothes, I hear, "splash". He poured the rest of the water out. I was sure I put the bottle far enough away from him.

Needless to say, my house was loud today. The Crying, The conversations, more crying, tv, teacher's voice, not to mention the voices in my head saying, "remember to call the PT/OT doctor, oh and remember to follow up with the insurance company. Don't forget to call the pediatrician to get that referral processed." No, I never got to those phone calls. EVEN with my friends here helping (thank you by the way!), I wasn't able to take time to make my calls. The good news is, they will still be there tomorrow.

by the way...Braxton now has a runny nose. Poor guy can't breathe. This makes for a very fussy baby. A runny nose AND teething. Loads of fun.

2pm rolls around and the babies are still not asleep. Rocking, singing, making faces. Even tried doing exercises with them in an attempt to tire them out. 3 o clock, phil walks in, and of course all I want to do is hand over the babies and say, "here. your turn." But I can't. He's still working. I watch him walk up stairs, thinking, "you are so lucky!" 4 o clock, 5, and now almost 6, I can still hear them downstairs crying as I sit here typing.

I managed to cook a quick spaghetti dinner, take the trash out, pour the bottles. Phil walks up behind me and asks, "is everything okay." The answer...no. It was such a LOUD and BUSY day.

I'm blessed to have a husband that cares so much. As a result...here I get to sit. alone. :)

xander's eyes

2010-05-04T14:07:00.000-07:00

Xander had an appointment at the end of may, to get his eyes check. However, he has a small cyst on the side of his eye (near eye lid) that looked like it was getting bigger. Per doctors orders, I called and made the appointment for an earlier date.

Monday we went and the doctor ordered a c/t scan to make sure it was a cyst and nothing else going on there. (she's pretty sure it is). For the c/t scan they have to sedate him....that word scares the heck out of me, because of his experience in the NICU. IF you remember, when he got his MRI, he ended up coding (and what that means, is they had to do CPR on him!). He was still on the oxygen and not as strong as he is now...so it might not even be an issue. However, it also could have been that he was allergic to the sedation medicine. I will, of course, inform the radiologist of this and if I have a choice, I would rather have him intubated for the procedure. In the NICU they have the doctor, RT, and the nurse all right there to help in case of an emergency. In the lab...not the same set up. The thought of putting a tube down his throat makes me sad...but not sure I want to risk the other issues.

On a better note...his eye sight is great! He is seeing just as if he were full term baby! So the doctor doesn't want to see him for another year! :)

yeay!!!

recent pictures of the carmona boys

2010-05-03T09:10:00.001-07:00

attempting to eat cereal by himself. You see how successful that went!

I love wearing over sized glasses. He did not want to take these off. Needless to say, he got some stares as we were walking around Victoria Gardens (thanks "nelly" for letting me wear your glasses!)

GG's weekly visit. She is in love. Can you tell. :)

My attempt at taking a shot of all three. Never seems to really work out. I need an assistant.

Braxton's new love. His fingers.

Dear Doctors

2010-04-30T07:39:00.000-07:00

Dear Doctors,

I am 4 and a half months adjusted and I am touching my toes, rolling over, grabbing toys (at mid line), putting toys in my mouth, "talking", enjoying my tummy time, and smiling at my friends and family.

I am NOT eating from a G-tube, I am not blind, I did not have any surgeries, I am meeting all my gross motor mile stones. Not to mention, I am not using a trach, I am no longer on oxygen, and my apnea monitors are no where to be seen. oh, and I never got that shunt in my brain you predicted would need to happen.

When I was just 6 weeks old you told my parents to give up and let me be with Jesus. Thank you LORD for having a different plan for my life. I cannot wait to see what you have in store for me.

Sincerely,
The mighty X-Twins
(Braxton and Xander Carmona)

perspective

2010-04-28T13:40:00.000-07:00

I'm a pretty mellow kind'a guy...I can lay contently on my play mat, or sit in my bumbo chair (longer than my brother can, i might add). or do tummy time and chew on my fingers. But my favorite thing is to be held. I love to snuggle up into anyone's neck. I start to get frustrated....really frustrated if you are not rhythmically tapping my back. oh and bouncing me, simultaneously. Okay, so maybe I'm not as "mellow" as I thought i was.
I use to startle very easily when my older brother would get right in my face and talk. But now he can be inches away and almost yelling and it doesn't faze me. It takes me a few seconds to focus on him, and as soon as i do, he leaves my sight. If only he would stay for a few more seconds so I can really see him.
If you really want to make me smile, just kiss me all over my face. If you want me to sleep....just rock me and bounce me. Don't even think of setting me down before i"m asleep. I will scream bloody murder and wake up my brother. My mom sure doesn't like that.
love, Braxton

I seeeeeeee you...i see you when you walk into the room, or when you leave. My whole head tracks which way you go. So if i'm trying to sleep, don't get into my line of vision, or it will make me cry because I rather be socializing. not sleeping.
I am a cat napper...I want to know what's going on and I want to be right in the middle of it. I love to smile and giggle at faces. I prefer mommy over everyone. Some say I'm a "mommas boy". I'm way better at soothing myself to sleep and I love my big brother caden. He's already my hero. I watch his every move.
I get frustrated when i drink my milk and it gets stuck in my throat. My mom says that will get better in time. It doesn't allow me to eat as quickly as my brother. I get tired out pretty easily.
I can handle chilling by myself. but not for long. Like I said, I like to be around people. More specifically, I love to be held. But don't hold me the way you want to hold me...hold me with your arm under my bottom and your other hand tapping my back. I guess I'm a little high maintenance.
love, Xander

"where?" "ball!" are my two favorite words to say right now. If you give me a ball I am a very happy camper. I like to call everything football though. I'm a little frustrated these days, though. I'm stuck in doors all the time. I get bored. My mom can only do so much for me. She tries her best to entertain me, but how much can she do when my brothers are screaming. Lately we have been taking walks. Thank God people come over to help my mom, that way we can do our walks and play at the park.
My brothers are turning into my best friends. I haven't hit them or hurt them in a really long time. I chose to kiss and hug them. All the time! I help my mom by throwing away diapers, getting her burp clothes, and handing my brother a toy when he is crying. Today braxton was screaming in his bed and I shook it in an attempt to soothe him, and I also said, "shh shh shh" like mommy does. It actually worked.
I'm excited that my brothers are getting bigger. I look forward to playing with them. I also look forward to leaving this house more often.
Love, Caden

THANK GOD for insurance

2010-04-23T05:09:00.001-07:00

Phil and I finally got the anticipated medical statement from the hospital. We looked at the bottom of the bill, and it read $1500.00. Yea, that's not really pocket change, but compared to what the NICU cost, it felt like pennies.

We looked at the statement more closely and had to get a pen out to draw in commas between the numbers to see just how much ONE baby cost (mind you, at ONE hospital). For one baby at Loma Linda it was over 2 MILLION dollars! So the five month stay was over 4 million at Loma Linda. The 8 day stay at Riverside Community was just over 400,000 for one baby. We are looking at a total of over 5,000,000 dollars. needless to say, our mouths dropped.

like I said....THANK GOD for insurance!

one track mind (pic)

2010-04-23T04:54:00.000-07:00

Scrolling down, you will see that Braxton has only one thing on his mind. He is trying so hard to attack his brothers head. it was really cute to watch.

success :)

high risk infant clinic

2010-04-22T04:33:00.000-07:00

Phil and I took the boys to the clinic this week. It went as expected. I expected the PT to comment on braxton's muscle tone. She kept telling the other doctor in the room that it was increased. This means that it's tight. It wasn't so tight that she was concerned enough to slap on a label of CP right then and there. In fact, she said with PT and OT a lot of it could get better. (that and LOTS of prayer!) So that is what we are doing. We got referred for pt and ot once a week. (i'm thinking each appointment will be once a week, making it two appointments a week for braxton.) For Xander, his tone was a lot better, but they were trying to find a way to get him eligible for PT and OT too. Because he was so premature, he could benefit from the therapy as well. So he's going to get the same services weekly. YES...the thought of driving kids to these appointments and securing sitters for caden sounds nightmarish. BUUUT, I'm not going to freak out-- everything has worked out great thus far, I know it will be ok. (at least I keep telling myself that to avoid a panic attack).

Developmentally, the boys are right on track with their adjusted age, which is 4 months. In fact, in some areas (localization of sound), they fell in the 5 month range. So they are doing good there. This was great news.

Braxton weighs 13.2 lbs

Xander weighs 12.7 lbs

Oh, and some more great news is that Braxton is off the Apnea monitor! whoo hoooo. This will make life so much easier. So both boys are tube and wire free! Praise the LORD.

Both boys are teething. that has been really enjoyable! (sense some sarcasm?!). Braxton's tooth has actually started to poke through. He's not eating as much and sleep is rare. I'm ready for the tooth to come in so he can finally relax some.

I see some light at the end of the tunnel as far as feedings go. In fact I sit here, right now, at 4:45am. I should have fed the boys at 4, that would have been 4 hours since their last feedings, but they are still a sleep. I do NOT dare to wake them. Our goal is for them to go 6 hours in the night. We can do this as long as they keep gaining weight.

We are introducing our boys to the outside world (church) this sunday. I am really excited and I know people have been wanting to meet them. Its a special event this sunday, with church being outside. I thought being in the open air would be "safer" (thinking of germs and all). I was never a germ freak until we entered into the world of the NICU. The NICU is the most sterile place I've ever seen....and we had to become "that" in oder to enter into the unit. I definitely brought some of that home with me. With that said...I'm still apprehensive about letting people get too close and hold them. Any infection will most likely still go right to xander's weak lungs and he will end up in the hospital. Hopefully people will understand.

next...we wait for the boy's eye appointments. Xander has one coming up in May to check his vision and to look at a cyst growing on the side of his eye. Braxton's is early june to follow up on his crossed eyes. (which have shown some good improvements!).

ALL IN ALL, phil and I are pleased and continue to thank GOD for all He has done. It's truly amazing...sometimes I can't even wrap my mind around it.

I hear a babbling baby...guess i better go warm up their milk.

twins are 8 months old!

2010-04-18T07:11:00.000-07:00

So hard to believe that our baby boys have been with us for 8 months already! I was just talking to a friend about how quickly their first birthdays are approaching. God has been soo good to us, it is unbelievable. 8 months ago I would have told you that I could never handle this journey. Who would say they could handle the ups and downs of the NICU; the scares and the what ifs and the unknowns; the juggling of a marriage, finances, and three kids.

almost three years ago phil and I got married and a month later we were packing up to move to riverside. At the time I knew it was for business. But God knew it was for so much more. I see it more clearly now, why He wanted us here. He saw the needs of our life before we even lived it. We are blessed to have our own business which PHil could have flexibility to visit our boys in the hospital and to help with the house/caden while I was on bed rest. God knew we would (after a year of searching) find an awesome church that we could call home. He knew how we would need all the support and encouragement only a "family" could give. God placed us in this house that we live in. It was bigger than we even thought we'd need. Why would the two of us need a 4 bedroom, 2500 sq. foot home?! We struggled at first with purchasing it, but then it was evident that God opened the doors. God knew our Family was going to instantly be growing, going from 2 to 5 in a matter of months. We are blessed to have a home that we can all live comfortably in.

All to say...these last 8 months, I have seen Gods hand on our life. Not to mention our boys lives. They are doing remarkably well! thank you for all the prayers. Braxton's eyes are slowly showing signs of improvement and his muscle tone is also getting better. We go next week to the clinic which they will give the boys an assessment to see where they fall on the charts developmentally. There is so much more prayer needed-- as they are still behind in many areas.

I leave you with a couple videos of our happy baby boys.

spoiled

2010-04-12T05:30:00.001-07:00

I am SO blessed to be married to a man who sacrifices so many things...for me.

As some of you know, the boys sleep

down stairs in a twin pack n play. Our arrangement has been this;

I put caden to bed about 7/7:30

and then I start getting ready for bed myself and am pretty much

asleep by 8:30. Because I am up at 3 to start my day, Phil has

been sleeping on the couch with the

boys and doing the late/early morning feedings.

He wants to be sure I have

as much energy as possible to take care of all three (VERY energetic)

children at those early morning hours (well, and all day).

I just feel so blessed.

The other day I slept downstairs so he could get more rest

(he had to leave for a job at 6am). The next day I realized

how spoiled i really was.

doctor appointment results

2010-04-08T05:45:00.000-07:00

Xander:

Xander's ENT appointment went well. They had to put a little camera down his nose to check out his vocal chords. (that was fun for us all! Of course I let phil hold xander while they did it.) As expected, he has a damaged vocal chord. It isn't paralyzed, but the nerve got pinched when they did the PDA ligation (around the heart). This is not a permanent thing and should go away within the year. This is the reason for his raspy breathing/voice. His muscles around the chord are very swollen as well, and this is caused by the reflux. I didn't realize it was that bad because he didn't show physical signs of it (spitting up, arching, etc.). But I shall continue the medicine and pray it gets better. We will go back in 3 months to see how he's doing.

Braxton:

Phil took braxton to the eye doctors yesterday. The good news is that his eye sight is actually pretty good. Most preemies are very near sighted. The ROP has resolved and the area that was raised that could have caused retinal detachment has improved. However, the fact that he's still crossing his eyes and he's 4 months adjusted is a problem. They will wait 4-6 more weeks to just see how it goes, and then will do the muscle surgery to correct this. Praying that no surgery is needed. I know anything is possible.

Next big appointment is april 20th. THis is where they will see all the Loma linda specialist, including doctors that took care of them while they were there. Very curious to see what they have to say about our little guys.

The life of caden

2010-04-06T06:30:00.001-07:00

signing, "helicopter"

up to no good...as mom's back is turned. Yes...my fault. I left the fridge open. Just for a sec tho. (ps. this was taken before that cheese was all over the floor)

what? he's got some snot he's gotta be responsible for. ;) Amazing what he picks up as I take care of the babies. (i was laughing so hard when I turned around and saw this).

"Mr. Cool" (And me just messin' around with color.)

He LOVES balloons.

Easter Day

2010-04-04T15:03:00.000-07:00

Easter is a time to reflect on a life, Jesus' life. He died...then rose again on this Easter day. It's also a day for me to reflect on another life, that of my dads. 11 years ago today, (feels like yesterday still) my dad died. He died suddenly, due to a brain aneurysm.

I'm sad and heartbroken as I am taken back to those moments of losing my dad. But after many years of struggle, I now have hope and joy knowing that Jesus lives and tells me I can call him "daddy". I will never fully comprehend why I had to lose my dad...but I now have a greater love and understanding of my heavenly father.

Happy Easter!

FREE

2010-04-01T17:41:00.000-07:00

Our little Xander if FREE from all wires. Off. Completely! Apnea monitor is going back and the oxygen can stay off of him. (we will keep it for another month, though, in case he gets sick and may need it).

The nurse today asked, "how old was he when he was born." (guess she didn't look at his chart) I said, "23 weeks". Her face was classic. She was so shocked to hear that and then I said he was a twin and she was even more blown away (since twins are at an even higher risk). She used words like, "miracle" and "blessing". SURE IS!

I took xander, for the first time [taking any one of the twins] to his appointment. He did really well. Barely cried and slept most of the whole way there and back. phew! I was nervous about the screaming and my sanity.

praying for more good news at next week's appointments.

Recent pictures: Easter Fun

2010-04-01T08:00:00.000-07:00

Having fun with daddy. Never a dull moment with these two.

Easter event at our local park

Watching intently at the band...I will be very surprised if Caden does not end up playing some kind of instrument. he LOVES music.

We got him to sit for a few minutes. This was taken just before he started to cry. My kid...cried?! ;)

Looking at the ducks in the petting zoo

Wasn't too sure about the bunny.

Easter Egg Hunt time

Which way do i go dad...?

his one and only egg. There were WAY too many kids and aggressive parents there. Should have grouped them 0-1 not 0-3. Oh well....next year you'll get more.

Tummy Time

Love the face, Xander

Looking good Braxton!

They love to lay next to eachother.

"appointment week"

2010-03-31T12:23:00.000-07:00

I'm preparing myself for a week full of appointments for the boys (all three).

Tomorrow Xander has his BPD appointment. This is where he see 4 specialist, including the pulmonologist. We are hoping after this appointment we can call the company that provides the apnea monitor and the oxygen tanks to come and get them-- once and for all. That will be so nice. Xander's monitor hasn't gone off in quite some time, so I don't see why they wouldn't do this.

Monday is Xander's ENT appointment. This is where we will find out if he has a "collapsed" vocal chord. This can happen due to being intubated for so long. If not collapsed, then maybe just weak. He still has a stridor/raspy voice, but seems to be getting better. They might have to do a procedure that will "put him out", to really tell. (hoping not tho).

Braxton has his follow up eye appointment on Wednesday. I'm thinking the doctor will suggest we start patching his eyes to strengthen the muscles. They are still pretty bad; crossed most of the time. Poor guy...he tries so hard to focus and just can't keep his eyes in one place. It hasn't stopped him from coo'ing and giggling all the time tho. He often tells us many stories. :0)

Next Friday big bro, Caden has his 18 month appointment. WOW, 18 months!?!

Busy few days comin' up.

muscle tone

2010-03-24T05:16:00.000-07:00

The teacher came by yesterday....she hadn't seen the boys in two weeks. I asked her if she thought that Braxton should get outside PT and she didn't think it was needed right now. In fact, she thought his muscle tone looked better!

She did one exercise where the boys lay on a big ball and roll back and forth. Before he would stiffen up, arch his back, and protest. This time he was not only relaxed, but was coo'ing and smiling. It was awesome to see. (I got a video of xander but not mr. b. I will upload it sometime today. It's very cute. )

I needed to hear some encouragement, and that I got :)

THANK you JESUS for continuing to watch over my boys.

7 months old

2010-03-23T06:38:00.000-07:00

At 7 months old big brother caden was attempting to crawl. (see video) Although it was more like he was trying to perform "the worm" he was, nevertheless, moving from point A to point B. It's so hard not to compare the twins to Caden. I am starting to internalize the fact that Braxton and Xander are not really 7 months, but only 3. Yes they were born 7 months ago, but their abilities are that of a 3 month old or younger.

You can see in the other videos how they are at the point where they are grabbing toys. This is one of their goals that the teacher set for them. I'm very proud!

They are starting to realize that they are not alone in this house. ITS ABOUT time! :)

Remembering when...

2010-03-19T06:29:00.000-07:00

Remembering when

I saw the boys suck on a binkie for the first time.

what an accomplishment...it meant they had the

suck reflex. How we, mothers of full term babies,

take advantage of the "little" things.

Here is a short clip of one of the boys sucking on the

"beginner" binkie. Their goal was to be able to suck

on the green one. These were huge moments in

these little boy's lives.

They would often get tired after only 5 sucks. We had

to hold it in their mouth at all times for quite some

time. Even now, we sometimes have to do that.

I'm so proud of my x twins!

update on the boys

2010-03-15T05:52:00.000-07:00

a few people have been asking about the boys-- here's an update:

The EI teacher (early intervention) came again this last week (they come weekly for 2 hours). She is concerned with braxton's muscle tone. He is definitely tighter than xander. Most preemies have tight muscles because they were not in utero long enough to get the flexibility that newborns have. They are stretched out for months and when they are touched, they tend to extend their arms and legs in protest to whats happening to them at that moment. Through time and stretching exercises, this tightness should go away. If it does not, or gets worse, that's when a neurologist will step in and diagnosis. Right now, Xander can touch his toes to his mouth (with my help) and braxton still has about 7 inches to go.

What does this mean? She still isn't recommending o.t. and p.t services, but wants us to continue to stretch him out throughout the day. Also she taught us infant massage which will also loosen his muscles. As we are well aware of the damage the brain bleed did, we are not confessing that these are signs of cerebral palsy. throughout the NICU stay, we were told that he is at a "VERY HIGH RISK" for some sort of CP. This can range from being a toe walker, to not being able to walk. I am not being naive to the fact that this is possible, and I do see the tightness, however I am still praying and trusting that he doesn't have any disabilities.

We go to the Loma LInda high risk infant follow up clinic in april. This is where they will see all the specialist at once and should get a referral to OT/PT at this time, if they see fit. We will see some of the doctors and the pt that worked with them while in the NICU. I'm anxious to see their reaction when they see them. Especially the one doctor; this doctor that runs the follow up clinic is the one that advised us to "stop all heroic efforts". We'll see what she thinks now. :)

As for his eyes...since I last sent the email to pray for him, his eyes have improved! His left eye is still very crossed, but both phil and I (and others who have seen him) have noticed that his right eye stays more focused. I suspect there will be some sort of intervention needed (probably patching). He is coo'ing and smiling a lot more too. He tries to grab hanging toys and can roll over from his back to his tummy (thats a huge milestone). Xander is doing much of the same. However, Xander is still more of the little social butterfly; he LOVES to be talked to and will laugh and coo at you all day if you let him. He is doing really well.

Mr. Caden is growing up soo fast. HE amazes phil and I everyday. He is a good big brother. He loves to hug and kiss them, but still has his occasional "why are these two little things in my world" attitude. He is learning to be patient, but lets face it..it's hard for all of us.

As for mom and dad...we are still breathing. I can't say we have adjusted...and I'm beginning to think everyday will be a new adjustment. It's a process...a process that never ends. And that is what I have come to realize. I have a daily choice. A choice to smile and be happy. Or to cry and be mad. I pray to GOD that I can make it through the day with more of the smiles than the tears. More often than not, that is how it looks. God is teaching us a lot right now. Some days I don't feel like I'm a very good student. Other days, I feel blessed to be in this situation; as I'm learning so much!