totally GOD

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

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

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

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

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

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

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

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.