Tuesday, November 30, 2010

Amazing

I have been really slacking on the updates and there's definitely news to update!!!!

Alex had his follow up sleep study more than a week ago. Check here for information from his first sleep study. Hubby definitely felt it went way better than his first study several months before since they didn't charge in the room with oxygen the entire night but we didn't want to get our hopes up. Even the surgeon who took out his tonsils and adenoids out wasn't that optimistic that they were enlarged enough to make that much of a difference in the severity of his apnea. Well Alex amazes the "experts" again, I don't know why I bother to be surprised anymore. He's been lovingly referred to as a rockstar since his wee NICU days and he continues to be one in my eyes.

We met with his pulmonary doctor and he said his obstructive sleep apnea went from severe to mild. His oxygen sats never dipped below 92% during the most recent overnight study. Can you say amazing???? Want better? He is now on his second night of sleeping at home without oxygen tubes all taped to his face. yep!!! This is only the 3rd time in his 18 months of life that he's been able to be without oxygen. Two of those times he's only been able to be without it for a week or two before getting sick and needing it again; so be forewarned the mama with the purell is back in charge during this winter cold/flu season!!!!

His pulmonary doctor agreed to let us hold onto the oxygen and apnea monitor for awhile longer since it was just in August that Alex had pneumonia and the only way he didn't have to be hospitalized was because we had all the oxygen, monitors and nebulizer machines at home. The doctor hopes that as he gets closer to two or three years of age if we can minimize his respiratory illnesses and give his lungs a chance to heal and grow healthy lung tissue, he'll be able to fight off colds, etc without needing the heavy artillery.

and Nicholas? Yeah he is pretty fabulous too!!! He started taking independent steps almost two weeks ago. He is so cute about it too. He flys around pushing anything he can find around the room and then stops about two feet in front of me and raises his hand above his head like he's in class with a question. I've learned this is my split second warning that he's coming for you, ready or not. At first he was lunging himself full steam ahead and pretty wobbly but in a very short time he's working it out and his coy little smile tells me he's pretty proud of himself too!

Those are just a couple of examples of our really fabulous days. But I'm a HUGE fan of the ordinary days more and more lately too. It feels like we've had a long journey to get back to ordinary. Just thinking back to everything that has happened over the last couple of years. The time and energy it took for us to start our family, then all of the complications beginning so early in our pregnancy, the premature birth, the three months in the NICU, the nine surgeries between the two boys in 18 months, illnesses, hospitalizations, new diagnoses, yadayadayada. I am more than happy to get back to the regular, ordinary day to day of life.

With no more anticipated surgeries (knock wood lots of times), and Alex coming off of his long time need for additional oxygen, there is this sense of calm that is just starting to settle in that I haven't felt in what feels like a very LONG time. I feel like we are coming off a turbulent road and rounding the corner at last. Its an amazing feeling. Am I using that word too much? oh well. I've tried other words on and thats the word that fits!

We've gotten a chance at some ordinary lately and I love it.

Goofing around at home:








spending time with family





The first hair cut

 Alex: I don't know about this
 hmmmm.....
 Okay, I approve!

And Nicholas?

 he was supervising
 and flirting.
now he says he has to grow some more hair quick
 so he can come back soon!!!


the Christmas pictures...okay well the header is just a teaser, will be back with more soon :)

Wednesday, November 10, 2010

Parenting

Sometimes I worry. Any of you who really know me will find this shocking I know, ha,ha. What I'm about to say may sound crazy. Maybe more crazy than my usual even, maybe not. When I was pregnant with the boys, I remember having many a night where I would lay in bed worrying about what the future held for them. I obviously worried about both of my babes but more so with Alex because of the known medical issues and challenges we were told he would face. Outside of the "regular" list of worries I had, I also worried about how the boys would relate to each other. A couple of the big ones included: Will Alex wonder why he was born having to work harder at being mobile then his twin, will he feel left out or left behind of activities that Nicholas will so effortlessly be able to do? Will he wonder why he has to deal with more health issues in addition to the mobility stuff? Will he resent his brother that he doesn't have to deal with any of that? These are questions I obviously still wonder about and only time will tell.

No, that's not really the crazy part. I think any one would get why my mind asks those questions from time to time. The crazy part is something I didn't really give much thought to until the last couple of months, the flip side. Will/does Nicholas get jealous of all the attention seemingly lavished on Alex? I mean I can't help but wonder sometimes how things might look from Nicholas's vantage point. Does/will he think that Alex gets more attention? We do have some pretty fabulous people who come several days a week just to "play" with Alex. Alex gets cool looking "boots", different types of play toys (i.e. equipment) just for Alex, etc. It may look like Mommy does a lot more one on one time with Alex as I am doing his daily stretches, exercises, as well as playing to entice Alex into a few more minutes in the stander. Nicholas also sees me taking Alex out for extra appointments and is just now getting to that age of him minus mommy = separation and oh by the way, he does not like separation so much right now. IS he thinking that he's somehow being left out of something special? If not now, will he feel that way as he gets older? Will he end up having resentments because of this?

I'm trying to be conscious of my time and energy with both of my boys. There is no such thing in parenting or life for that matter as fair and equal. You do the best you can in any situation. I try to spend some extra one on one time with Nicholas when Daddy's home or when Nana is over. Nicholas is a mommy's boy (for now at least) and I LOVE that. He gravitates towards me the way Alex throws himself at his Daddy (or Nana) the second he/she walks in the room. I actually love that too, the unique bond they share with each of us. Anyway, my hope is that I can be the best parent I can be to BOTH of my boys.

Mark and I have always said we wanted to treat and raise the boys the same. We don't want to "baby" Alex because of his disability. On the contrary, we want to give him the tools (therapies, exercises, equipment, etc.) to be just as independent as his brother some day and many days we ask ourselves are we pushing Alex too hard, not hard enough? Are we requiring the same from him as from Nicholas? Heck we even ask ourselves if we are not encouraging Nicholas enough on the mobility front because what if subconsciously we don't want him to get too far "ahead" of Alex? Oh the second guessing. I was a much better parent years before I became one. I've had quite a bit of experience with children. I worked in day care for several years and did private nannying for years through college. Gosh I remember how I used to just know I would NEVER do this or I would ALWAYS do x,y,z for my child, the exact opposite of whatever example I was seeing at the time. Ofcourse now having my own children, the light bulb has come on and I realize its never as easy as you assume it to be.

Funny now that you can look back and see that in every stage in life, you're the "expert" until you are the one actually submerged into the role. Then reality hits and you realize that you don't know half as much as you thought you did. Or at least thats what I"M finding. oh well. I guess if you didn't have that bit of blind confidence, you wouldn't take that next leap. and the next leap? Its always worth taking. Even if you are a bit blind while doing it.

In all of this worrying about what kind of time and energy I can give to each of my boys, I can't forget ofcourse that its not just about my time and attention (or Daddy"s) that matters solely to the boys individually but what they bring to each other. They might not have our attention all to themselves but they are sooooo fortunate to have a built in play mate and pal 24/7 which most of the time they seem pretty happy about. Its nothing short of awesome watching as they purposefully try to get each other's attention now, make each other laugh by doing a goofy face or squeal or trying to play hide and seek or chase each other.


video

Like any parent, I want my boys to be the best of friends. I think about how I can help teach them, raise them to look out for one another, support each other and cheer each other on. I know, I know, they are so little still and I know that I can't control every thing (although I may forget that in the next moment ha,ha) but I do believe I have a strong role to influence them.


I know their relationship began a long time ago but I am in awe of how it transforms from little newborn babies that curled up together to nap but didn't truly see each other or interact 

here after growing three more months in the NICU
snuggling at home
not a care in the world, Nicholas making a good arm rest

to now banging on their crib with fierce determination to wake up their brother because hey, its time to play. and when awake always checking to see what the other one is up to. I can't wait to watch how their friendship develops.






They are quite simply my double blessings. If they can feel even a fraction of what my heart can barely contain for them, how tremendously they are loved, I will know I am doing an okay job at this parent gig.

Friday, November 5, 2010

Number six

 Here was Alex before surgery this morning. He was very skeptical of the "new" people milling around him but enjoyed one on one time with mommy and daddy and his favorite things, books.


This was Alex after surgery. My usually "too busy moving and shaking baby" to sit and cuddle for even a second but then when sick or not feeling well turns into the baby who snuggles deeply into you for hours at a time; I've said it before but its sooo bittersweet. Luckily I am able to hold on tightly in these moments, for him and for me, soaking every last drop of it in and reminding myself that this sweet chunky love is doing absolutely AMAZING. I may hate the reasons that he is folded into my arms in these moments but I"m darn sure going to take them and wring them all out as long as I have them.

     


Surgery went VERY well in the words of his urologist. It was a very long surgery in our eyes, well over three hours but not unexpected. The surgeon had a lot of very delicate detailed work to do and we ofcourse are glad he was not rushed. Alex did unbelievably well under that long with anesthesia given what we know about his lung issues. He was able to be extubated right after surgery and just on a little bit of oxygen. A huge relief all in and of itself. It took him several hours after surgery to come around but we were able to be on the way back home by dinner time. 

oh and the surgery itself? VERY successful. I'll spare you the nitty gritty details but for any one truly interested or who speaks urology, he had a very extensive hypospadius and chordee repair as well as orchidopexy repair. It was so extensive that the surgeon had prepared us that he would more than likely require a second surgery to do the "finishing" work. After today, the surgeon stated that he was able to do everything he needed to do in just this one surgery and that he does not anticipate needing any further surgeries for this. Hubby and I just looked at each other. We didn't even know that we could hope for that. We figured it was just something that would have to happen. Hearing that your baby does NOT need to have another anticipated surgery is beyond amazing. This was already number six for him and yeah, we are okay with six being last. We feel that six is a good number. We would have never wished for six but now that we are here, we love six. We are MORE than happy to stop there. 

Life has admittedly thrown some pretty darn tough things at him in his 18 months of life (wow, I can't believe its been 18 months). But Alex you are such a fighter. And not in a loud, annoying in every ones face kind of way. You possess this quiet, resilient kind of strength that most people take near a lifetime to cultivate, yet you seemed to have been simply born into this world with. 


You have this serious contemplative side about you, this quiet, searching, take it all in 

and then bam, out of nowhere you bust out with your crazy giggles and squeals



 and I love your ability to amuse even you.

and this hilarious wriggle up your nose and snort thing? laugh out loud funny, even to you. Same thing your brother has been doing. Do all kids do this? It just cracks me up.

The last few pics were taken yesterday at Alex's orthotic appt. While we were waiting we found a mirror that was just calling to Alex. Apparently he was really taken with the "other" little boy in the mirror so I snapped a few pictures. so sweet.

Monday, November 1, 2010

Halloween

The boys (all three of them) started celebrating Halloween a couple days early when I brought the kids in to visit Mark at work. Mark works for a great company and they take the holidays very seriously. Each department comes up with a theme and they go all out. Its fun. Marks department was Mario brothers in case you can't tell from his get up.
Lion (a.k.a Alex) wasn't sure what he wanted to pull off from Daddy more,
his hat or his "mustache"
Nicholas was busy flirting with all of the pretty ladies



Dragon (a.k.a Nicholas) asking Luigi (a.k.a. Daddy) "are you looking at me?"
Alex was playing hard to get.

Then on the actual night we invited some very pretty witches (a.k.a cousins)
and another dragon over for a visit.




Can you believe this dragon is just a month older than ours?
Sorry Nicholas, he doesn't have vertically challenged parents like you do.



Anybody there? a little help here? I mean "ROAR"--get some help over here.



oh......whose idea was this anyway?
our little dragon was fairing similiarily
but still flirting his way though


Here he is trying to get out the door with Uncle Mark to get some candy
By the end of the night, they were tuckered out





Nicholas perked up a second seeing the bowl of candy,
definitely related to his mama

Once they realized they weren't getting any of these treats,
it was all Bye Bye!!