Thursday, April 29, 2010

Life is just this good....

Just enjoying our lovies, thought I'd share a few of my favorite recent pics

so rare that he keeps a smile while the camera is out
so I snapped away as fast as I could.....

okay so all of these were from a little (ahem, okay ALOT) of help from one of our kitty cats.
hey, whatever works....

has recently decided how much he enjoys his voice....
by squealing.. as.. loud.. as.. he... can!!!
he is very entertained by himself

oh boy I AM cute, aren't I?

Nicholas tells our good friend Jeff, oh thanks, I'll take one of these....
oooohhhhh and one of these please.
we ARE celebrating right??

Wednesday, April 28, 2010


I have sat down to write this entry a half dozen times. Now a normal entry will almost always take several different sit down periods anyway in between naps, bedtime and life as it is. But this one is different. I am having a hard time collecting my thoughts into any sort of order. Bear with me because I'm pretty sure this entry will be as scattered as I am, though maybe you should be used to that by now.

I guess I shouldn't be so surprised. As we are preparing to celebrate our sons first birthdays, the feelings over the past year are just bubbling out. The magnitude of emotions honestly have rattled me a bit. For the most part the feelings are of sheer GRATITUDE. The kind that make you want to shout from the rooftop: WE MADE IT!!!!! The first year!!!!

I remember sitting in the NICU week after week and thinking that this would be the milestone that I would finally be able to sit back, rest my head and breathe easy. In many ways I am finding that to be true. Maybe not quite sitting back far enough to put my feet up and rest my hands behind my head but what parent of little ones can? But breathing easier we are. We have found our groove, a routine. We have settled more and more into a sense of normalcy. Yes our normal is peppered with weekly appointments for physical therapy, feeding therapy, home nursing check ups, helmet adjustments, etc but at least the boys don't know any different. To them right now, they have several more regular people that like to "play" with them.

I am especially feeling a little less harried now that we have found this routine and that we have gotten the boys to be able to eat, play and even nap together. It already feels so long ago the days where I had to feed to give them their reflux medicine a full 30 minutes before bottles and then feed them at separately so I could attend to each one with choking and gagging issues. It would take 30-45 minutes each feeding having to lay them on a pillow on their sides to feed so they would be less likely to aspirate (choke on the liquid). During all those months, they would  nap on different schedules. I did however enjoy the one on one time with each baby during those months but the feeding times alone felt never ending. Being able to feed them together finally and put them down for naps at the same time is a little paradise now. This is just one reminder of how much we have accomplished this past year, little and big!

This birthday, this milestone feels like a very big deal. I know there is no magic that says now nothing bad can happen after May 2nd, that its all easy streets from here. But still, it does feel magical. I have our boys, they are home with us, they are doing more than well, they have had so many obstacles in their short life but they are THRIVING. I am such a lucky mama!!!!!!

Soooooo I guess I didn't expect the other feelings to come along. The ones that are reminding me of the really hard times, the beginning, those never ending months at the NICU. More and more lately I wake up with these thoughts in my head. Kind of on a replay of sorts to whatever we were going through this time last year. Life is so good right now, why are these feelings getting muddled in with the celebratory ones? I have even been waking in the middle of the night thinking of the hospital and those 24 hours leading up to their birth and the panic I felt every time the army would rush in to take a better look at the boys on the monitor and say we might not be able to put off their delivery any longer, one of the boys was in distress again, getting the shots to try to quiet the contractions, only to have that happen several more times day/night before they actually had to deliver them.

I still remember the fear, terror of whether they would be okay, and after they were born that surge of emotions of these were our boys, and it was like another blogging mom so beautifully describes: "after your children are born its as if your heart is now beating on the outside". My heart was instantly and completely owned by those little one pound gifts. As they wrapped their sweet itty bitty fingers around ours, I wonder if they could feel the power they already possessed over us.



I am wondering if these feelings have just been tucked away and are now coming back because we could never truly acknowledge them then. We had to blatantly ignore these fears, the knowledge of how vulnerable the boys were, how fragile life is just to get through the day, the moment. We only half listened as the nurses and doctors had to tell us all the "might be's" of those early days/weeks. The complications of being born too soon, too little, with all the possible and potential future side effects of medications, treatments, surgeries, all the while noted that there were no other options to any of the above for their survival. We had to take these risks in order for them to survive, no matter what the fears of the future might be.

We needed to be strong for our boys, so we really couldn't possibly sit with those fears for more than a moment at a time or we couldn't function. All of those feelings and fears apparently are still there to some extent and seem almost to be waiting for me to have the energy to deal with them. I think over the course of these months that I have chipped away at them little by little. Immediately we are greeted by them like a long lost "friend" whenever the boys have gotten sick, have another surgery, another hospitalization. Those feelings are just waiting for us until we acknowledge them and bid them farewell. Well I'd like to just hold up a HUGE sign in summary to them: yes we know how lucky we are, every day we soak in their joy, their laughter, even their whines and tears. It took almost two whole months to hear their first cries and yes sometimes when they are crying or yelling for me, I still remember how thankful I am that I can hear them (now now I didn't say ALL the time).

I'd like to think we take nothing for granted because we know very acutely we could have lost them many times. We were supposed to be "preparing" ourselves to lose them during more than a dozen ultrasounds because of their restricted growth and placental problems that started at just 20 weeks as we quickly needed twice weekly ultrasounds because of blood flow problems to the placenta, then periods of distress that started happening at just week 26 when their heart rates would take turns plunging, then their birth that came months too early at just 28 weeks of our pregnancy.

We were supposed to prepare ourselves when Alex had to have his back closure repair surgery at less than 48 hours old when he was just over a pound and a half. Our neurosurgeon is considered one of the top in the area but even he had never operated on this small a baby with a very large opening. We later learned many people in that operating room did not think he would make it.

We had to prepare ourselves for many days and weeks when both of them struggled with breathing issues and countless times of watching them turn blue even while on the ventilators, and receiving caffeine treatments to keep their blood pressures up. We were supposed to prepare ourselves to lose them during their turns fighting infections and becoming septic, needing countless blood transfusions and scares of NEC bowel disease.

We can acknowledge all of that, we LIVED through all of that, we do not need to live through it all again so go away negative feelings, we are done with you. Can't you see what we have now instead?

                                   August 16th 2009:  the day we got our whole family home......

We have two living breathing beautiful miracles. Together these amazing boys have defied all of the "statistics", sooo many of the "possible complications". I don't know what we ever did to deserve these incredible gifts but I'm keeping them and every single day I am so thankful for them. So go away negative feelings because this weekend is all about CELEBRATING!!!!!!!!

Friday, April 23, 2010


Sorry its been so long since an update. The last couple of weeks have brought many changes in our house. We are busy celebrating every single milestone (big and little) and quite a number of them have happened just in the last two weeks!

First off.........we have.............
can you make them out? little itty bitty but very sharp TEETH!!!! If you zoom in you can make out Nicholas's

Alex is rarely caught on camera with a wide open smile so even though you can't see his chompers, I still had to post this gorgeous pic. Actually Alex has FOUR teeth in less than two weeks and Nicholas is working on number three. Our little munchkins have been a little fussier and needier these last couple weeks while they have been cutting these pearly whites but a part of me is just enjoying a little extra cuddly time when I can too!!! Something about seeing my baby boys with big boy teeth is pulling at my heart strings, a reminder that my babies are growing up. Which is a very good thing but also bittersweet because really, where is the time going??

In other big news.........

                                                                  we are on the move.......

Nicholas is scooting EVERYWHERE and he has finally figured out how to go forward. Even though mom and dad got a kick out of watching him go backwards.....

He is just now figuring out how to get his knees underneath him too and he looks so darn cute, doesn't he?
If we thought we were busy before, HA, HA!!!

Just in case he hasn't been busy enough, He has also learned how to sit like a big boy!

Alex however is not to be outdone. In one week he has learned how to roll from his back to belly which uses a ton of strength from his upper body and just yesterday he ended up rolling consecutively over and over to get to the dining room. I just stared open mouthed as I witnessed it (and ofcourse didn't think about grabbing a video until after I closed my mouth and then had the slap yourself up the head moment). 

Mark and I are already finding ourselves saying things like "hold on Alex, don't roll over yet" or while we are changing his diaper or clothes and we look at each other and smile because we just love that we have to say that to him now!!!

Here is though about to roll himself up in a blanket tortilla, so adorable.
We had so many beautiful blankets made for the boys and we love them all,
we just keep circulating through and enjoying each one!!! 
This one was adorable, thank you again Desiree,
the boys LOVE them!!!

oh and do you see what he was trying to hide on his shirt? ha,ha
yeah, this is one of those that BOTH the boys wear :)

P.S. We have since gotten a couple of videos of the boys showing off their new skills 
so we will post these soon

We have been enjoying getting outside whenever the weather permits.

something about the sunshine and fresh air after a winter of being cooped up

I love how the boys eyes sparkle

and I just wonder what goes through their minds as they take all the newness in....

Here's a few just hanging around the house.....
There is something about a toy that always looks more appealing
when someone else is playing with it....

they both roll around and try to get at the cords
before mommy has a chance to stop them.
they are getting quicker......

I love more and more how they just look to find each other
or watch what the other is doing.....

it just makes my heart happy

and now that they are both more mobile, I love how 
they are content to just find their way next to the other

Best buddies already!!!

No posing
Nicholas honestly just rolled over 
right along side his brother

Monday, April 5, 2010

11 months

Our boys are 11 months old. ELEVEN months (8 months adjusted). We can't believe it. We are in the countdown mode to their 1st birthday. An entire year in some ways feels like it has slipped like sand in our fingertips. In other ways it feels like there were times our feet were stuck in glue, firmly planted in spots we couldn't wait to get through. So much has been crammed into this last year of our lives. Even though we've certainly had more peaceful times lately, I don't think its been possible to process it all.

All I can see from this view right now though are these two incredibly precious miracles that we have been given. We couldn't be more humbled, more grateful that these two beautiful boys are ours, and that they are doing so well given their rough start. I know we will reflect on this past year many times over and I hope to be more articulate in the future but wanted to thank every single person who has and continues to send positive thoughts and prayers for Nicholas and Alex. We know we have been so blessed!!!!

Current update:
We continue to wean Alex's oxygen. We have had him off of it completely for up to several hours at a time now while we watch his monitor and make sure that he's not having to work too hard to breathe. He was seen by pulmonary last week and had another chest xray. We walked away very confident about the plan to wean him from the oxygen like we've done before. But we got the xray results that his left lung is not exchanging air fully. They are not entirely clear why. Found out today that its really partially collapsed--fancy word is: atelectasis. I know you want to, but don't google it. I love google. I'm not sure I go a day without using it. Maybe I am addicted. But its never good to try to learn medical stuff from google, never. Thats why we have doctors....and phones....I have another call in now as a matter of fact. They however might not like the fact that I have google AND a phone, ha,ha. 

Anyway, when Alex was in the hospital, it was his right lung that had the pneumonia and then a day or two later his LEFT lung also sounded "gunky" as well so they suspected a virus on top of the aspiration. Pulmonary said it was possible that a virus caused this and it will just take time to get back to normal. They don't seem overly concerned which I guess is a good thing. They say he is not showing any "clinical" symptoms so there is nothing to treat basically.They will do another xray in 6-8 weeks to follow up and in the meantime just to watch him closely during our attempts to wean him. Ofcourse it makes us a bit more anxious to take away the extra oxygen knowing one of his lungs is not performing optimally. Ofcourse I googled right after I got off the phone with the nurse from pulmonary so now I have a bunch of questions. I have a call into his pediatrician to get her take. I think I just need reassurance that he really doesn't need something more, some sort of treatment, further assessment or at the least an xray sooner. It seems concerning to know this and not do anything or even check again for almost two months. I guess maybe because he's not acting "sick" which is a GREAT thing, but after doing some "reading" (me + internet=bad), I'm afraid we are missing something. I need to get some more questions answered but for now we'll just take it one day at a time.

We also got a letter in the mail recently reminding of us Nicholas's upcoming surgery (urology surgery). We've known about this pending surgery for months, and we were just waiting for him to be bigger. He has a pre-op appt in a couple weeks and his surgery is scheduled for May 10th. The surgery is not expected to take very long, and its outpatient but still leaves us feeling a bit queasy about the whole thing. I"m sure it will all be fine but we'll be happy to have another one behind us and our little ones.

Other BIG news for both of our sweet ones is teeth. Yep, they are coming in. We felt Alex's tooth last week just sprouting through the gums. We are just starting to see it (actually two side by side are starting) but boy can you feel them, ouch! A couple days later we felt the same with Nicholas. They are growing up, its soooo bittersweet.

The making of an invitation

The making of an invitation......

can you believe it?

Our two babies about to be ONE YEAR old!!!!!

Alex: Mooooooommmmmm, Nicholas is not sharing....

Alex: Hey, give me that
you're not the only one turning one you know

Nicholas: okay, you had it for like 30 seconds already,
my turn....

Mom says we sure would work on sharing

Nicholas whispering: I hear this birthday business is a big deal.

You can keep this number thingy if I can have
your share of the cake.....

Alex: Are you nuts?
I'm outta here.