"appointment week"

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

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

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...

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

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!

praying for braxton's eyes

As most of you know, Braxton's eyes are weak and he is cross eyed most of the time. The eye doctor isn't too concerned just yet, seeing as how he's only 3 months adjusted in age. However, I am not seeing much changes; which of course worries me. I wanted to write this, in hope that people would pray with me, specifically on braxton's eye muscles. The worse thing that could happen is surgery, and from there, surgery again (as they say it often takes a few tries to get the alignment right). UGH!

I feel so bad for Braxton, because you can tell he wants to interact like his brother and smile and coo, but he can't ever seem to focus long enough to enjoy what he's looking at. He does, however, respond to your voice and you can tell that he gets excited when you are talking to him. He does smile and coo, but it's not as often as Xander (who is mr. social butterfly)

We try to give him something to focus on all the time...especially our faces as we know babies love to look at faces.

Here's a picture of what his eyes look like. You can see his left eye is a tad worse than the right.

beating the odds

I learned today that 1 in 20 NICU babies leave the hospital with some degree of deafness. Preemie babies are pumped with so many drugs, many of which have a side effect to effect hearing. Not to mention, just the lack of developed bones/nerves/muscles in the ear, a result of prematurity, can lead to hearing problems. I got a smile when I read that information...remembering that once again...we beat the odds!

(not that hearing problems would have been a huge deal....I think we are pretty much equipped to handle a deaf child) ;)

"helper" caden

"Here you go Xander"

"hmm...how does this diaper work..."

"no...xander you are suppose to push this to make the noise."

The ZOO

We had the opportunity to take caden to the zoo for the first time. IT was such a great day. Caden loved getting all the attention and of course we enjoyed it too. Thanks to my cousin kirsten and friends Heidi, Darla and Katie for watching the twins, we were able to "escape" for a day. Thank you guys! xo

some recent pics

attempting a brother shot. Caden's mind is on food (as you see him signing it), braxton is practicing his receptive signing skills, and xander is comtemplating sleep.

Just a cute moment with grandma ("gg") and Braxton

6pm...trying to stay awake till bed time (7)

xander doing some reading...(don't mind the baby mullet goin' on)

daddy time

When he's not working, he's being an awesome daddy. His children LOVE him.

regional centers first therapy session

The first visit with regional center went well. The teacher (as they call the early interventionist) was really impressed with their abilities. She will be coming once a week for two hours.

Some of what you see here is tummy time, stretches, sensory therapy, tracking exercises, etc.

I was happy to see that Braxton could roll from his back to him tummy without help! I need to give him more opportunities to do this. Really, she left us with some homework, as she will do weekly. One was to give both boys more floor time and more opportunities to grab things. I struggle with this, because when big brother is around, you can't keep them on the floor. The boys have to be carried, in a chair (with an adult very near by), or in their bed. I'm going to make a point to let the boys do floor exploring when caden is asleep.

We did notice that braxton is more stiff on his right side. So I will be doing more massage on that side. Finding time to do all this will be the challenge. I know it's SO beneficial for them, so we will figure it out.

Conflicted

I've always struggled with being completely honest about my feelings and being true to my heart. The whole idea of being vulnerable and transparent was so foreign to me. Wearing different masks was a defense mechanism; a way of dealing with hard situations. If I talked about it, it was real. If it was real, it hurt.

My dad died my first year away in college...I was 20. I used so many masks, all of which had a smile on them, to get through the next few years of my life. It wasn't until I met a good friend in San diego, that I was really aware of what i was doing and how that was going against everything God wanted for me. I didn't want to heal from the hurt, because to get there, I had to hurt more. I didn't want to talk about all the baggage I was holding on to, because I didn't want to impose on other people and have them feel obligated to help the "little weak one".

Let me fast forward...After some counseling, love from good friends, and a desire to move forward, I started to take off those masks and reveal my true heart. A heart that felt pain, shame and so much more. My friend showed me and poured into me God's truths. I learned how valuable it really was to be vulnerable and true to who you are. I realized during that journey that I was not alone. Everyone has hurt and pain and how is one to know that if you don't let it be known. How is one to pray for you specifically, if you always hide under a mask. How are you to help others if you don't reveal the truth (which could be the very thing that helps that person).

All that to say...I'm conflicted. I have grown so much in this area, but still struggle at times. God has brought me on this journey of being a preemie mom and I have SO many emotions that carry me through it. My goal is to be real and portray my true heart. A heart that gets and feels angry, frustrated, finds joy and laughter, bitterness, resentment, regret, worry, happiness, love and so on. With that said...I NEVER want to come across as if I'm complaining and whining as I walk through this journey. Through all those emotions mentioned, I still stand strong and still press on not because of my own doing, but because someone (God ) bigger is holding me up. I am blessed with people around me that constantly show me God's love and speak His truths in my life. If it weren't for all of you, and God himself, I would be a complete disaster. I would let the spirit of resentment and worry and anger get a hold of me and direct my steps.

So I'm trying to find that balance...to be real and honest without whinning and complaining underneath it. Forgive me if I've ever come across ungrateful. Still a work in progress...

Braxton's eye appointment

Braxton's eye appointment went better than I expected. As some of you know, his eyes are very weak, in that they cross most of the time when he's trying to focus. I was anticipating the eye doctor to be very concerned with this and link it to neurological reason. This wasn't the case at all. She actually said she wasn't concerned because in reality, he is only about 2.5 months old and even full term babies have problems with crossed eyes. Which I am aware of...but braxton's eyes are very crossed. Sometimes it looks like he is looking at the bridge of his nose for a lot of the day.

Me, being mom, has been worried about this (of course). I've been trying to just let it go and pray about it and remember that God has His hands on those little eyes. Every day, I notice glimpse of improvement. He does smile, ever so often, and ever so slight and this is when he can focus on your face. Once he does, it's apparent that he sees you and can be "social". that's something I'm watching too....his ability to socialize apporpriately. It's so hard, because xander is cooing and smiling and is such a social little boy. It's hard not to constantly think of the brain damage that has gone on with braxton, and link that to every little thing I may or may not see in him (ie: focusing, not smiling as much, not tracking, etc.). The truth of the matter is, though, that Braxton could just be on a slower course than Xander. These things he is lacking (compared to his brother), is not necessarily a direct correlation to the PVL (white matter damage).

What's next....Braxton goes back in a month. The doctor wants to see how the blood vessels are doing (this time she didn't dilate his eyes because she didn't see a need), and see how his eye muscles are working. At 4 months adjusted (About April), braxton should have shown great signs of improvement. Please, if you will, be in prayer with me about this for this next month. Worse comes to worse, and it's not a prematurity thing, but he actually has crossed eyes (which is very common among preemies), then they can use glasses, patches, or even surgery.

Thanks for staying in touch with our boys health and development. We appreciate all the continued support!