Thursday, November 12, 2009

The unpaved road

Nicholas caught flirting with his physical therapist.

Alex makes us work for his smiles and plays shy as soon as we get the camera out but thats okay, we love his serious, thoughtful face too!!!

After my last post, I am relieved to report a new peace has settled into my heart and our lives this week.

Several events have helped this, and I believe ofcourse that these events were not just incidental but thankful for the calm whatever the cause. Anyway, getting back to our week: Since the boys technically turned 6 months last week and are thought to be very high risk, they were able to be vaccinated for the regular flu, H1N1 flu, AND RSV (a specific respiratory virus that affects preemies and commonly results in many hospitalizations). We are soooo grateful for our doctors and nurses who made certain that the boys were listed as high priority as we know that two of these vaccinations are quite difficult to come by. The RSV vaccine in particular is $1500 PER shot and needs to be given once EVERY month from now through April. It takes a lot of lobbying with the insurance company given the expense but is so important since the boys missed out on all of the immunity usually provided to babies in the 3rd trimester. We are thankful that they have been approved for all of these!

Having said that, we are doing our part to try and keep the boys protected. We are officially in "lock-down" now that the cold/flu season is in full swing. We keep the boys away from grocery stores, malls, even church--anywhere where there is a mass of people and unfortuantely with it lots of opportunities for illness. Its easier to protect the boys by having visitors on our terms, where people are sure to wash hands/purell before touching them or things that the boys touch. We desperately wish we could share them with many more and "show" them off as all new parents do. The isolation is already starting to creep in and its only the beginning of the season but I remind myself its such a small price to pay in order to do our best to keep them healthy and hopefully out of the hospital. Next year hopefully they will have built up some immunity and grown healthier lung tissue so it won't be so detrimental if they do end up with a cold but for now we are settling in but I digress...

The other great news this week was from Nicholas's surgeon. He evaluated Nicholas and what we thought were his hernias recurring are not. Instead they are something called "hydroceles" where its not the intestines falling down but simply fluid pockets. The surgeon said this can happen after surgery and should have no negative impact on Nicholas, they are not sure why they occur but they tend to resolve on their own within 6 months to a year with no intervention. NO INTERVENTION, oh how I love hearing that!!!!!!!!

Ofcourse this reminds me that there is a lesson here I am supposed to be learning and yet continue to fail to do so. I always get way ahead of myself. I had myself all tied up in knots last week thinking of yet another surgery for my baby, sure that it would come to that, and thinking of going through all of that again when we were hardly two weeks out from Alex's recent surgery and for what?? Needless waste of energy, anxiety and sleep. I don't know why I do this to myself, I've certainly had many of these life lessons and yet I still have not learned to trust that things tend to have a way of working out even when we can't see it. My tendency has always been to try to "prepare" myself for the worst as if that helps ease my burden down the road but inevitably the road goes off in a direction I could have not foreseen anyway. (This also reminds of of something I had written for the church bulletin just after learning I was pregnant with the twins but before I learned of Alex's Spina Bifida). Well, maybe I will share that in another post. And maybe, just maybe one of these days I will learn from these lessons.....

Onto the boys: they are growing and changing by the day, by the minute. As any parent can attest to, it is simply thrilling to watch your children discover themselves and the world around them. When I am not smothering them with cuddles and kisses, I sit back and find myself amazed as I watch them discover their hands for the first time, as if they are seeing them for the first time, or reaching out to touch a rattle and surprising themselves when it moves or makes a noise, or the light that is in their eyes when they see us come into view, oh what a feeling.

We've learned Alex has quite an arm, its really shocking how hard he can whack at those toys, maybe he doesn't like these and he's really trying to tell us he would like new ones, we're not sure. He's also chatting so much more these days, and rewarding us with his smile a little more all the time. Nicholas is in constant movement, beginning to roll and turning himself in a complete 180 from wherever we put him. You can not help but laugh when he gives you a giggle or sticks out his tongue and is absolutely delighted with himself when he gets our reaction. They are both discovering how to put their hands in their mouth and talking to themselves at the same time, it is so sweet listening to their "conversations". I know these things probably sound so simple and yet somehow we feel such a sense of pride as we witness them accomplish these new tasks.

I had just found out a year ago today that I was pregnant. Wow. Sometimes I can't believe that this journey really just began only a year ago, with all that we have experienced in this year. I think back to those days, the pregnancy, the exhilaration, the dreams, and then the anxiety and fear as things twisted into something quite stressful and complicated. I think back to the "experts" information, weekly ultrasounds, specialists, hospital bed rest, the emergency birth three months too soon, the NICU, the life support for the first two months; surgeries, infections, all the tubes, wires.....But then I remember the dedicated doctors and nurses, all the prayers and support that enveloped us. I remember our babies little teeny tiny hands that were able to grip our finger almost from the very beginning, as if they already knew us, and were trying to reassure us, how fragile they seemed yet how hard they fought. I look at them playing in our living room, seemingly without a care in the world, as if none of that ever happened. Miraculous. No other description is possible.

We may have some challenges here and there, and we are certainly not on any road I could have ever predicted. But it is a beautiful road nonetheless, and where once I could have only seen an unpaved road riddled with hills, rocks, and cliffs that seem to come out of nowhere; now I can see all the vibrant wildflowers along this road, patches of green grass in between the rocks. I feel the breeze on my face, the sun on our backs as it comes out from behind the clouds, and feel the gentle squeeze of my husbands hand in mine as we look on at our little ones, our hearts bursting with love and I know we have been amazingly loved and blessed. I also know there will likely be more hills and rough roads ahead, but looking around, the view is pretty incredible from here!

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