Sunday, November 29, 2009


We've always had so much to be thankful for: wonderful family and friends, our health, eachother, a warm home, the list goes on and on.....and yet these last few years we couldn't help but feel something was deeply missing. We knew what it was ofcourse, it just took a lot of time, tears, prayers and love. These prayers were answered last year, and it was a year ago at Thanksgiving dinner that we shared the news with our family. At that time we thought we'd be becoming a family of three and we were in the clouds. I would have never dared to even dream that God had an even better idea.

So at this Thanksgiving we are again counting our blessings plus two! This Thanksgiving we are more sleep deprived, more frazzled, certainly less put together than at this time last year but also never happier!!!! (and thanks to our family, we were more than sufficiently fed and we guiltily didn't even have to lift a finger this time--Big thanks to Grandma and Grandpa Johns, Aunt Becky and Sophie for a wonderful dinner!!!!)

Ofcourse can't leave you without sharing photos of our two most favorite people and treasured gifts!!!!

Happy, content Nicholas and oh such a cutie!!!

Gorgeous Alex who rewarded us with a semi-smile and happy for the brief time he was allowed to be without those pesky plastic things in his nose to pose for Christmas card pictures!

Thursday, November 19, 2009

Too early for Christmas?

It has been another beautiful week. I hope saying that doesn't jinx it. The boys are fabulous. We had an appointment with their pediatrician this week and it was a great visit, nothing but positive news. Ofcourse for little tiny babies who began at just a pound and a half, we are always vigilant about their growth, probably obsessively so. They are obviously still quite a ways from being on the charts for their age, even for their adjusted age but they continue on their own curve and the doctor is pleased with this. We went over a few concerns, because frankly even when things are going well, we can always seem to find some questions or concerns we have but really everything is going well. I think this is one of the first appts. that we didn't have or learn about a new health issue, another test, or another medication....Is it too early for Christmas? This is really such a gift!!

Oh, okay sooooo, drum roll please..........

Nicholas broke the 10 pound mark!!!!! He is now 10 pounds, 3 ounces!!!! If that wasn't awesome enough, Alex is 11 pounds, 1 ounce. It just thrills us: DOUBLE DIGITS!!!! I think we cling to these numbers because its a concrete way of knowing that they really ARE doing well. Is it too early for Christmas?

Nicholas is his chatty self, giving us those filling up his whole face smiles and throaty giggles. Alex is giving us bigger grins and just starting to share his giggles with us too, its beautiful!!! They both reach out and touch our faces, grab at their toys, and follow us with their eyes wherever we are in the room. Its amazing that these two tiny beings have the capacity to make us feel like we are the entire world....and they certainly are ours. Amazing gifts!

Mark and I have both witnessed a number of times this week while Alex is napping, one of his legs extending and lifting completely off the floor, completely!!!! He's done it several times in a row so we are both sure we are not imagining it. He also seems to tense his legs and his butt at times during diaper changes and can flex his feet a little as well. We don't know what this means as far as the big picture, it doesn't really matter. This is the child that the "experts" warned us would likely be paralyzed from the waist down and maybe not even be able to move his upper body. God obviously has a different plan. Whatever comes of it in the future, we know we have been blessed!!!!

Recently we've even had a couple of nights here and there where we've gotten a six hour block of sleep. Oh to have some more of those, so I ask, is it too early for Christmas?

A couple weeks ago I received an unexpected gift in the mail. You know how nice it is to receive a card, even a hand written note in the mail these days? Really anything other than a bill or junk mail is pretty nice. Well, I got this package and when I opened it, it was wrapped in x-mas paper. I debated whether I was meant to open it yet or not, but then I figured if the sender knew me at all, they knew I couldn't possibly wait until Christmas before I opened it. So I did. They were the most beautiful hand made Christmas stockings I've ever seen. Even more precious were the names handcrafted in them: our sons with the date of their first Christmas. A most beautiful gift, I was so touched that someone had the thought to do this, let alone spend the time. My next thought was, is it too early to hang them? Is it ever really too early for Christmas?

Its funny that I'm feeling this way this year. Honestly in recent years I've been a little bah humbug around the holidays. It certainly is wayyyyy too commercialized and there is way too much time and stress spent on trying to have the perfect meal, figure out how you will manage to see everyone, where you will go, who you will invite to your house, find the perfect gifts, and not nearly enough time spent just being with our family and friends and letting them know what they mean to us. I really haven't looked forward to the holidays in quite some time.

Everyone says that it changes when you have kids. I just had no idea that I would feel this way already. The boys will certainly not understand yet that this will be a special time of year yet I'm already excited about having our first Christmas. After all of these years of dreaming, we finally have our family. What a blessing, what gifts we have been given. It sure already feels like Christmas to me!!!

Happy Nicholas
Sweet, serious Nicholas
Thoughtful Alex
Alex wondering how I like his new headband.....
Daddy and Alex sharing a laugh, just priceless!!!

Here are the boys first stockings. Thank you sooo much Debbie, we LOVE them. And the boys, well I'm sure they can't wait for us to fill them!!!

Their first ornament
Reads: "two peas in a pod"

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!

Thursday, November 5, 2009

Six months

Its sooo hard to choose which pictures to post when they are all sooooo cute, but here's a few of my favorites.....

Alex and beginning of a smile.....

Pensive Alex

Please Mom, just no more photos

shhhh, don't tell him I took another.....just couldn't resist

Nicholas looking very guilty....
Happy, Happy Nicholas

Its hard to fathom that the boys are now six months this week. SIX months. Incredible. They've been home for almost three months and our lives are simply unrecognizable in a challenging but also beautiful way.

Things are going overall quite well. Alex is still doing well post shunt surgery with his newfound energy, voice and appetite and we are loving that. In the last week we have visited Pulmonary, GI, cardiology, Ortho and neurosurgery for follow up. Alex will likely be keeping his oxygen on for awhile because it is thought to help his lungs (obviously) and his heart to not have to work so hard. His oxygen levels have been very stable on the small dose he is on so we actually got permission to disconnect the actual monitor during the day while I am with him and just use that at night primarily. This is actually a big deal since the monitor can create quite a bit of extra stress, and tends to set off the alarm just when the actual sensor gets loose or he moves too much, and not for any kind of emergency (even though it gets the adrenaline rushing when we hear it). He has not needed an increase in his oxygen in quite some time which is great. We obviously know the signs to watch out for during the day if there is an issue, and ofcourse we "plug him in" every night so we can hear the alarm if anything God forbid happens at night.

I actually thought I'd have a harder time being without the monitor to look at anytime I wanted to double check his numbers but its really more of a relief not to have it 24/7. Our comfort level is much better in this regard and shows now that we've moved him back upstairs to his room with his brother, so now Mark and I can both sleep in our room as well. (When Alex came home initially on oxygen and monitoring in September, we were taking turns sleeping with him downstairs so one of us could always be right next to him just in case).

The other news for Alex is his "bump" is coming back. Mark and I were surprised and confused when the new flat spot on the side of his head started filling back up this week, along with some other swelling near his catheter site on the back of his head. The neurosurgeon was able to reassure us that nothing terrible is happening but apparently the site where the previous shunt was placed must still be somewhat open and the fluid is just finding its way back there. We are not sure how much it will re-fill but if it becomes too large again, the only course of action is another surgery to try to close that site. Mark and I were very disappointed to hear this and hope that it won't come to that.

Due to the fact that Alex has had that bubble for so long, it caused him to lay on the other side of his head all of these months, resulting in very tight neck muscles and a misshapen head on the other side. Neurosurgery wants to see him back in three weeks and then is recommending that he get fitted with a special helmet to re-shape his head. Apparently this is something that he will need to wear for 23 hours a day for several months. He said the extra fluid and shunt site make this more challenging and might require him to wear the helmet until he's about a year old but time will tell. Wearing this to he's about a year old? That seems soooo long.

With everything else that he has been through, this is the least of our worries but still saddens me for some reason. I worry about him being uncomfortable, having to wear something on his head all day/night for months on end. In my heart I think, "hasn't he been through enough already, can we give him a break already?" I know he will likely sail through this challenge like he has every other one before him. But I can't stop thinking about how much he hates the oxygen in his nose and how he gets agitated about it and trys to get it out, and now thinking about something on his head, It just feels like there is one thing after another for him and it makes my heart heavy.

In other news Nicholas has taken a little step back with the feeding issues and we've been in touch with GI several times this week. We tried decreasing one of his GI medications and even one less dose seemed to prove havoc. His appetite is back down, we've had to try numerous remedies (none of them pleasant) to help him "go" and he has lost several ounces from last weeks weight. It is a very powerless feeling when your baby doesnt' want to eat and when you know they are not getting enough to grow, or even maintain their weight. I have to say the constant feeding issues that we've had taking turns with either of the twins all of these months is one of the most chronic stressors we face. I used to long for the day that I could feed them both at the same time, now I just long for the day that I can take out a bottle and not feel like I have to fight with one of them just to take the minimum for their health.

Lastly it looks like Nicholas's hernia is back and likely contributing to or the result of some of the issues above. We spoke with his doctor tonight and they said its not "common" to have them return after surgery but apparently it can happen. The concern is that the part of the bowel that has fallen down could get "stuck" and result in a partial or full obstruction of the bowel so she says we are likely looking at another surgery for him very soon to correct this. We will be consulting with the surgeon again asap. In my head I'm adding up the surgeries that my babies have gone through in their very short lives (4 surgeries for Alex, 2 already for Nicholas) and praying for some peaceful time ahead.

I guess it shows that I'm feeling a little weary tonight. I'm sure with some sleep, a "nap" as it may be and some prayers, I'll be feeling more upbeat tomorrow but I thank you for "sitting" with me when I'm not always at my best, and sending us your love and support. I admit that I often feel like I "should" only write when I'm feeling optimistic and strong, yet I think it helps sometimes to have an outlet the moments that I'm feeling anything but so thank you for that (not that you really had a choice, huh? but I guess you could just stop reading sooooo.....I guess if you ARE still reading, THANK YOU!

(I'm going to turn in now but will add some updated pics of the boys to the post tomorrow because really, isn't that the best part?)

Sunday, November 1, 2009

First Halloween

Here is a very serious penguin and monkey.
They learned there would be no candy for them this year....
but still so adorable!