xander's eyes

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

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

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

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

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)

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

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.