life with jack

Cuddle Bug

2012-01-31T09:49:00.002-07:00

Busy day, so I'm just going to leave you with this image that I'm totally in love with. This was last week. My cuddle bug. Before this pic was taken, Jack had been sitting like this for an hour! Melts.My.Heart.

Thanks for all the kind comments on yesterday's post. We'll be back tomorrow!

New

2012-01-30T12:27:00.001-07:00

I feel as though I'm entering into a new phase of being Jack's mom. Coming out of the fog, you could say. When he was born, we were in survival mode. Just making it through the next minute was how I operated. Each and every day. And I continued to be there for at least the first year of Jack's life and part of the second. Survival mode is no way to live. But you have to, no other option really... besides giving up, I guess.

I am in a much different place now. One of acceptance. I used to not want to talk about Jack with anyone in person. It was just too exhausting. Too many questions. Too many unknowns. Blogging was my defense. I could say "did you read the blog?" It was my way of protecting myself to not being vulnerable in person. About how Jack was doing and even more so, how I was doing. That's how it needed to be. Jack took up the majority of my brain space and talking about it all, out loud, was sometimes too much. It is a difficult journey being a mom, especially when motherhood is no where near what you thought it would be like. Just working through those feelings alone took forever.

Somehow, I'm feeling different these days. It's hard to explain or quantify, but life is much easier and safe. I had to work through that slew of emotions for almost three years to get to this place and I'm so happy to finally be here.

I'm pretty sure this correlates to Jack not having any major health scares or surgeries for a year now. How different that feels! I know that day will come again, and it could be soon. Jack has two shunts and shunts don't last forever. I still have to brace myself for immediate medical emergency, but it feels far off at this point. And now Jack's more mobile than he's ever been. It's still hard to take him out in public and carry him everywhere. He is getting so heavy! But what a a huge relief to know that he will walk! That knowledge lifted a burden that was weighing so heavily. And eventually, I know, he will be able to eat and join in when we go out to a restaurant. What a day that will be!

adding this, my favorite pic of January, to click it up a notch photo contest

This weekend was wonderful. I had a big group of friends over on Saturday morning for brunch. It's something I've always wanted to do, but never had the energy to pull off. Plus, it was the first time in 3 years that we've had company to our home, germs and all. It was so good for my soul.

so very content

While I was having fun, Jack and daddy went to my parent's apartment and hung out. Jack loves that place. Later in the day, my parents and brother came to see us one last time before my bro heads back to China. We went out for dinner and back to our place for dessert. Jack was in heaven because his favorite, Cheeks, was here.

On Sunday, we went to church and then out for lunch. Sadly, we had to say our goodbye's to my brother. Hopefully he and his wife will be back this summer. Later in the day, Jon was part of a fundraiser for a local nonprofit that works with homeless families. He cooked up 350 pulled pork sandwiches for what they call the "Comfort Food Challenge". He did great. I have pics, but haven't gotten the chance to edit them yet. Trust me, the food was so good and seeing all the area churches working together was really cool.

It was such a busy and full weekend. Nothing I ever would have imagined after Jack was born. There were times when I thought we'd never have an easy, fun-filled day.

Just spending my Monday morning cherishing the new...

Flashback Friday - Calming

2012-01-27T15:35:00.000-07:00

Jack at 9 weeks old, 32 weeks gestation

The nurses taught us many calming methods to soothe Jack while he was in the NICU. Since preemie skin is so sensitive, you don't want to disturb it with any stroking motion of your fingers. Instead, we would gently lay our hands on Jack, apply gentle pressure without movement, and speak to him in a very quiet voice. It seemed to work... until those pesky diaper changes!

In Which I Write a Love Letter to My Son

2012-01-26T15:44:00.000-07:00

I was telling daddy last night how spoiled I've been this week. You've been so very clingy, and I absolutely love it. I have never had a week where you would willingly come over to me and get up in my lap, totally content to sit with me and cuddle for more than a couple minutes. To give me kisses and hugs. To want to be right with me, all day long, always looking with those adoring eyes. That's what this week's been like, and I'm in heaven. If I could bottle just an ounce of that feeling, I would be set forever.

You are such an easy going kid. I keep counting my blessings in this area. All you need is a good book, a tickle here and there (you love being tickled!), one of your favorite shows (Sesame Street this week) and you are good to go. Hearing that sweet giggle escape from your little, perfect lips is all I really need.

I often wonder what you are thinking about. I can tell you are deep in thought and then suddenly, something amusing must pass through, because you give the hugest grin... like in the picture above. Cutest thing ever.

I sure do love you, Jackpants. Thanks for making this week so special for mama.

Jack's New Speech Therapist

2012-01-25T15:04:00.002-07:00

We've been very excited about Jack's new Speech Therapist and I wanted to introduce her to you today. Not only is she the perfect fit for Jack (caring, gentle, incredibly gifted, soft spoken, and kind), she is also a good friend.

Score!

This is Julie. We have known each other for almost 5 years now. Throughout our NICU experience, she would come and visit. She has known Jack since he was teeny tiny and has cheered him on every step of the way. And as luck would have it, she's an amazing speech therapist with a heart of gold for little ones.

She moved away for a couple years but has recently relocated back to our town. We couldn't be happier!

Some may wonder how a close friend would do as your child's therapist? Let me just say that it is wonderful. I've never felt more at ease. More than that, I feel like I can be totally honest with how things are going, with my concerns, hopes, and fears, and she will get it. We strive to keep the patient/therapist relationship just like it would be in any other setting. When Julie arrives at our house for our weekly, one hour session, we are all business. We get homework to do and reports on Jack's progress.

Friend and therapist? Best of both worlds.

But the very best thing is that I get the comfort of mind knowing that Julie truly cares about how Jack is doing. And that, blog friends, is priceless.

Favorite

2012-01-24T09:47:00.001-07:00

Jack got this toy as a baby shower gift. I don't remember who gave it to us, but I would LOVE to thank them again. It has saved us more times than not.

Baby Einstein Take Along Tunes has helped us through every single head ultrasound that Jack's had. It's saved us through every horrible eye exam. It's helped us calm him down during check ups. And it even distracted him enough to make him eat when he was desperately hungry and losing weight fast. Best. toy. ever.

It plays soft music and lights up. Pretty simple, but for some reason, it mesmerizes Jack. Here he is, just before surgery. The toy calming him down.

Guess what? He still loves this toy and it has lasted almost three years. That's a pretty good investment of $9! (Thank you baby shower gift bringer!)

I swear, this toy is magic. I get it for pretty much anyone about to have a baby. And I've been known to send it off in the mail to little ones who will likely have lots of Dr. appointments. It will come in handy. We gave one to Jack's eye doctor after hearing him ooh and ahh over how well it distracted Jack and made him sit still and focus his eyes. The doc proceeded to buy an extra 5 for his office.

It's the best. Really. And as Pioneer Woman would say - this ain't no paid advertisement!

Uncle Dice

2012-01-23T15:00:00.000-07:00

Back a year ago, when Jack was talking much more, he would call my brother "Dice". You see, his name is Bryce, so that's what Jack heard and it stuck. We now go about calling Bryce by his new awesome name of Uncle Dice.

This weekend was special because Uncle Dice was in town for a visit. He lives in China, so we only get to see him twice a year. We had a great time.

Jack was so, so happy to have Uncle Dice here.

Come back soon!

Flashback Friday - 1lb, 2oz.

2012-01-20T13:15:00.002-07:00

The second smallest preemie in U.S. history got to leave the NICU today. She was born at 9 and a half ounces. That is almost half Jack's size at birth. Incredible.

Thankful Third Thursday

2012-01-19T14:37:00.001-07:00

The rules: On the third Thursday of every month, I will write about 10 things I am thankful for.

Why? Because the lovely mummypinkwellies (you know when you see "mummy" you got a Brit blogger!) asked me to join in the fun. And I accepted!

10 Things I Am Thankful For

1) This yummy brownie I am eating right now
2) Photography
3) Our Jeep that gets us through a foot of snow
4) That my brother is visiting this month from China. He's coming to see us this weekend!
5) Books, books, and more books
6) That "restless" feeling that motivates
7) My husband looking smokin' hot in his new suit
8) Snow, beautiful snow
9) Giggly boy
10) Reading this sentence from Jack's Seattle feeding therapist:
"Sounds like Jack has made some great gains. I know it seems slow to you Jessi, but those are big changes since I have seen you all"

A Morning Snowed In

2012-01-19T13:31:00.000-07:00

Snowpocalypse 2012 has finally arrived! We've had a mild winter by Montana standards and although this is not the most snow I've ever seen, it was really quite a bit and sure made things beautiful.

So it looks like we got around 12 inches of snow yesterday and last night and possibly, a bit more will come today!

Another play date got canceled this morning, due to the weather. So we made the most of our time, all cozy and warm inside. Read lots of books.

Like all kids, Jack trashed his room in under 2 minutes.

Our living room also had a toy explosion. See the green one in the left of the picture?

Jack loves this thing. It's a bouncy toy. Loves it. Lots of time spent on it this morning.

And then, watching some shows. Loves his Elmo.

He seriously likes to be inches from the screen.... that can't be good for the eyes.

And sweet Daisy.

All I can say is, bring on the snow!!

Preemie Lungs (also another good reason to cancel)

2012-01-18T12:57:00.001-07:00

This morning, I checked my phone and there was a text message from a friend saying she had to cancel a play date. One of her little ones has a runny nose and cough. Once the initial disappointment subsided (I mean, who likes to look forward to seeing someone, only to have it canceled?), I was quite thankful. Really.

Here's why:

Sorry for the small size, but it's the best illustration I could find. The top picture shows a rendition of the difference between preemie lungs and full term developed lungs. The second picture shows just how tiny preemie airways are. This is why I'm thankful when friends cancel. The difference between a preemie getting a cold and a typically developing child is obviously very different.

RSV is a scary word in preemieland. For a typically developing child, contracting RSV may result in a minor cold, although many end up needing medical help. For a preemie, things can get much, much worse, including possible death. That is why many preemies get the outrageously expensive monthly Synagis shot. This is Jack's first RSV season without it. He got Synagis the first two seasons while he was in RSV Isolation. Despite the nerves from not having that extra barrier of protection, we feel much more confident in his lung development now that he is almost 3 years old. Still, we try not to knowingly go into situations where colds are present.

Some other factors to consider in lung development: I was not able to receive steroids to boost Jack's lung development prior to his birth. Many are able to hold off delivery in order to get these life-saving steroids. If you were able to receive steroids, that is so, so good! That, added to Jack's birth at 23 weeks, his dependency on the ventilator for so long, and his O2 dependency until 10 months of age, gives Jack his Chronic Lung Disease diagnosis. Jack has a Flovent inhaler (same drug as many with asthma take) and a standing nebulizer prescription that we've (thankfully) never had to use.

All this to say, I am thankful when friends cancel. It shows they care about Jack's health and are thinking of what's best. I once arrived to a dinner party where the host knew I would have Jack with me. This was during summer when we weren't in isolation. I walked in the door, sat Jack down, and after a few minutes was told that the host's child, another kid in the room, had "a really, really bad summer cold". Yes, RSV is present during summer and I immediately heard him hacking away. Needless to say, I booked it out of there ASAP and was really mad. The good news is that this was the only instance where I've had to leave something because someone was sick. Normally, people alert me ahead of time. It's best to be prepared in all situations though and the main word that comes to mind is flexible - you just have to be flexible. Yes, I had a slight pity party after that one instance, but it was for the best. You have to do what it takes to keep your kid healthy, right?

Many of you are in RSV isolation now and I think of you often. I just want you to know that there is an end in sight. Really, there is. If you didn't get the chance, make sure to read my 10 Ways to Make it through RSV Season. I hope that it's helpful in some small way. January, February, and March can be very rough months, so I definitely feel for you all. I've been there, and now can see if from the other side.

One day, you will, too.

Canceling

2012-01-17T11:54:00.001-07:00

Nothing makes me cringe more than a call to the therapist office to cancel. I don't know what it is. I mean, I get calls all the time on the other end... about a therapist canceling because they have a hair appointment, are going out of town, have a sick kid, etc. I don't take offense when someone cancels, because we've all been there. But for some reason, I get all nervous when I have to call and cancel.

Take today for example. There is this winter weather advisory hanging over our heads and today is the day that we are supposed to get in the car and travel 3ish hours on (what could be) bad roads. I religiously check the weather websites. I noticed that it's supposed to start snowing, and snow hard, around 4pm today. That is right when I would be making our journey back home. Add to that driving in the dark, and I just don't feel like chancing it.

Still, you never know with weather and it could totally be fine all day. I always say better safe than sorry and I don't want to chance it. But I just HATE canceling.

I had to cancel a commitment last night and that also produced some intense nerves and back and forth over whether it was the right decision. Why can't I just cancel and feel OK about it? Maybe it's because I pride myself on not being "that flaky person"? I don't think of myself as a people pleaser, but could that be some part of it? I hope not. These are mysteries to me that I may never figure out.

The bigger thing, I think, is that I want Jack to get therapy. He needs it. It is very helpful to him and helpful for us. We were really spoiled when we had all therapy in our home for the first two years and never had to venture out into the winter tundra of Montana. Therapy only works if you are consistent at it. So maybe there is an element of guilt playing into all of this. I just want what's best for Jack.

How do you feel about canceling?

Little Getaway

2012-01-16T13:47:00.000-07:00

Our little getaway was definitely enjoyable.

We went to Big Sky, Montana. Jon had to teach a continuing legal education class being held at the resort, so we decided to make a weekend out of it. Jack stayed with Grams and Cheeks and I'm sure, loved every minute of it.

Most people go to Big Sky to ski the gorgeous slopes. We only had one full day there after Jon was done speaking, so we chose to relax in our rustic lodge and just chill.

It was perfect. Fireplace? Check. Large, comfy couches and chairs? Check.

Jon spent most of his time on his iPad finding interesting news bits and articles to read to me. He is always good for some snarky commenting.

I read this book that is our book club choice for the month. A warm and fuzzy book full of recipes that just made me want to bake something.

Speaking of eating, we found some gems in Big Sky. Namely Blue Moon Bakery (great breakfast and lunch spot) and Lotus Pad (which has to be some of the best Thai food I've ever had).

We also made sure to take some walks around the resort to catch some of the skiing and snowboarding action. It was fun people watching.

After our time in Big Sky, we decided to spend a day and night in Bozeman, Montana. I love Bozeman, especially the downtown. Highlights for us were an afternoon at Barnes and Noble and then a movie. We ate good, too... the Nova Cafe (yummy breakfast and fun atmosphere) and Blackbird Kitchen (seriously one of the best restaurants in the state. After eating there, we were devising a plan to move to Bozeman just to be able to eat there more often).

snowy, downtown Bozeman.

It was such a wonderful little trip. We just relaxed and spent time together. No agenda or schedule. Just what we needed. And of course, once home, got lots of love from our little guy.

Flashback Friday - Safe

2012-01-13T12:37:00.000-07:00

Jack is 14 weeks old here, getting toward the end of his NICU experience. Safe in Grams arms, just like he is this weekend while we are away.

we don't take our fortune cookies lightly

2012-01-12T12:29:00.002-07:00

No really, off we go. I'll have a scheduled post for Flashback Friday, so be looking for that tomorrow. See ya on the flip side!

Crabbypants

2012-01-11T14:59:00.001-07:00

Jack likes to hang out in the hallway. I think it's because he can be in the middle of all the action. He always has a favorite toy with him (which oftentimes is a remote or some such item... yesterday's cell phone?).

So stinkin' cute.

Today Mr. Jack has been really frustrated. Seems he is on some sort of hunger strike this week and refuses to eat (teeth maybe?). He's also decided that "No Nap Jack" needed to made a resurgence. Those combined make our Jackpants a Mr. Crabbypants.

I'm hoping our sweet little, cell phone and remote loving guy makes a comeback soon!

If you end up receiving some random call...

2012-01-10T13:33:00.000-07:00

It may be from Jack.

He has finally discovered that he can flip open my phone and has proceeded to text people, write a couple emails, and update my status on Facebook.

Now all he needs is to get snarky commenting down pat and he can start his own Twitter account.

Wow...

2012-01-09T12:14:00.000-07:00

Hello new readers! There has been quite the jump in activity on Life with Jack this morning. It seems many of you are coming to read my "What Not to Say" post... and many of you are having strong feelings about it. I want to say thank you for stopping by! I always love to see new traffic and people interested in micro preemies and especially our miracle Jack. I want to give you a little context for how that post came about.

It was actually a year ago, right during this time, that I wrote it. I was having a particularly hard week. I was frustrated and scared about Jack's progress. No one ever said having a micro preemie would be easy! I was experiencing what many of us preemie parents experience. Unfortunately, people can say some hurtful stuff and that specific morning, I felt I needed to write about it... to explore my feelings and to have some time to vent. Yes, this is my blog and I believe blogging is the cheapest form of therapy, so I vented. I can see now, looking back, that I was very angry and trying to process my anger. I am the first to admit it.

I don't apologize for writing it. On the contrary, the majority of feedback I have gotten has been positive and affirming. But, I felt the need to explain this to you today. That is the process of blogging. You have good days and bad days. A blog is a personal opinion and not everyone has to agree.

Let me end by just saying this: We will never, ever regret saving Jack's life and performing life-saving measures on him. It has always been worth it, even with the challenges and special needs. It was never even a consideration. Life is ALWAYS worth it. I feel very sorry for you if you disagree with our decision and sad that you would feel the need to share that. I challenge anyone to come and say such a thing to Jack's face. I assure you, one look and your heart would change.

Flashback Friday - CPAP

2012-01-06T14:21:00.001-07:00

It was a very exciting day when Jack first tried CPAP. That's when this picture was taken. Little did we know that Jack would have to try CPAP on and off for about a month until he got the hang of breathing without a ventilator. I remember distinctly feeling that NICU roller coaster during this on again, off again relationship.

P.S. Doesn't it look so uncomfortable?

Last, But Certainly Not Least

2012-01-05T13:54:00.000-07:00

Our one big goal for occupational therapy:

Jack has never used his left hand. He doesn't have much control over it, and oftentimes, totally ignores it (along with ignoring much of the left side of his body). He is very protective over his left hand and arm and often cradles it and keeps it close to his body. We don't exactly know what is going on with his left-side, but it seems that as opposed to the use of his left leg, Jack is much more guarded when it comes to his hand.

Do any of you use constraint induced therapy? We are going over our options, but one of the main things we hope to do in 2012 is some sort of variation of it. Basically, it is where you restrain the "good" hand or limb thus forcing the use of the neglected side.

We wonder if Jack is a candidate for this. There is an option of doing a 3 week intensive in a another town where Jack's good arm would be fully casted and he would work with an occupational therapist to retrain his brain how to use the other side. We are still figuring out if this is the best avenue, so if any of you are familiar with it, please comment! I imagine this type of therapy would be very frustrating for Jack, but many say it is successful.

Another option is not so intense, but restraining the good arm (with a type brace that can come off and on) for a certain period of time each day to encourage the use of the the other side. This may be what we try first, before doing the intensive. Truthfully, either option makes me worried, especially when I hear those in the occupational therapy field have differing views on it.

Both of these options are working at re-wiring the brain, making new pathways within the damaged areas of the brain to encourage movement. We see how clever Jack has to be with the use of only one hand and this encourages us that with his determination, we may see an increase in what his left hand and arm will one day be able to do.

Jack working with his occupational therapist

come on buddy! use that left hand!

When Your Child Doesn't Say Mama

2012-01-04T11:27:00.001-07:00

Is Jack non-verbal? I wouldn't go that far, but he definitely doesn't say much. At one point last year we counted and Jack said around 25 words. At the time, it was an appropriate number for his age. But since, and especially this past summer and fall, he seemed to regress and his vocabulary shrunk dramatically. He now says 4 words on a consistent basis. He is more likely to scream in frustration or excitement to communicate with us.

We've chalked this up to his total focus on walking, with our therapists in agreement about this. They have ruled out Autism, although they can never say that with 100% certainty. We know the link between micro preemies and Autism is very high, so it's always something to consider.

Jack has never been in speech therapy for any traditional reason. But when we noticed that Jack wasn't progressing with communication and seemed to be digressing, we decided to get Jack into traditional speech therapy, which I'm excited to say, starts next week!

So for 2012, our communication goals are:

-increase in vocabulary, regaining the use of old words and adding many, many more ("mama", please?!).
-be able to follow simple commands
-more interaction skills
-increase in attention span
-increase in overall understanding of what mommy and daddy are saying
-speaking in sentences (remember, we dream BIG in our house!)
* since we've never been in speech therapy, I don't know the proper terminology for a lot of these, so please forgive me... I'll know more soon.

Can't wait to see where 2012 takes us with communication!

Totally In Love.. oh and some goals.

2012-01-03T09:50:00.000-07:00

I'm in love. Like, totally.

I know I've said it before, but my little guy makes my heart swoon. This morning we cuddled on the couch, intermixed with giggles and kisses. He likes to sit right next to me now in the mornings. He used to be content playing with his toys and watching his favorite shows, but now, he wants to be right next to me. I love it. Seriously, there is nothing better than his adoring eyes and cute antics. Nothing.

So my heart feels like it might just burst this morning. I know this is totally sappy, but ya know what? I don't care. It is what is is. And I don't know how long this mommy-loving will last, so I'm just gonna drink it up.

Today we head off to another town for a couple therapy appointments. Jack is seeing his new physical therapist and feeding therapist.

I know I promised to write about goals for this next year. As far as physical therapy is concerned, here is what we hope and dream will happen during 2012:

-more stability and balance
-getting from seated to standing position independently (without the use of furniture to pull himself up with)
-independent standing (not just in short increments, but able to STAND for as long as he wants)
-walking long distances
-going up and down stairs
-maybe, just maybe, running (we dream big in this house!)

For feeding therapy, here are our 2012 goals

-texture, texture, texture! My dream is for Jack to ask me for a cookie. I would give him whatever he wants, really. Seriously, he doesn't understand his power!
-eating table foods
-no more buying in the baby food aisle
-drinking all hydration needs
-maybe, just maybe, taking that g-tube out for good!

We need our cheering section now more than ever. Thank you, our faithful readers for being a listening ear and encouragement to us!

A New Year

2012-01-02T12:29:00.001-07:00

Jon and I went out on New Years Eve for an early dinner. I have been stuck with a yucky head cold for about a week now and I didn't really feel like going out to eat, but I'm really glad we did. We had our trusty babysitters (Grams and Cheeks) in town so we just had to take them up on their offer. We got a chance to talk about what we wanted to accomplish this next year. But mostly about what we wanted for Jack. It's one of our favorite things to do together - to dream and make goals.

Having a child like Jack puts us planning types in kind of a semi-limbo state. You just never know what can come up and you can't plan too far ahead. We have learned this the hard way. So we now leave room for those things that stop you in your tracks and change your direction. You just have to be flexible with a micropreemie.

Someone asked Jon recently what his 10 year plan was. Jon said he felt like laughing out loud when the person asked him. We just can't plan in 10 year increments. Gone are those days. Still, we dream in our own way and I've come to really appreciate the perspective that Jack has given us about life - the joy from it and also the frailty of it.

All of this to say, it's a really exciting time in our lives. We have a lot of unanswered questions, but that's just part of this great adventure. I will be posting more on our 2012 goals as far as Jack is concerned as this week goes on. Make sure to check back to hear about physical, feeding, occupational, and speech therapy goals that we have. I can't wait to see the progress he makes!!

I'm gonna leave you with some pics of our little Christmas celebration that we had with Grams and Cheeks this weekend. Jackpants was especially cute in his Superman pjs.

We got to eat one of our favorites - Aebleskivers.

so good

In love with these pjs.

Jack's "stocking" this year from Grams and Cheeks (you just can't have enough 2 oz. syringes for g-tube bolus feeds).

New book that Jack has to "inspect" first. This requires flipping the book over and over , multiple times.

of course he loves the ribbon

Jack's favorite new thing to do is play with daddy's hair. I'm pretty sure I have about 20 pictures from this very day where Jack is combing through Jon's hair with his fingers.

I want you all to know that as I was typing this, Jack has been right next to me. He has discovered that he can not only jump on the bed, but jump on the couch, too. He makes monkey sounds while jumping. Very, very high-pitched monkey sounds. Lovely. If any of this post does not make sense, you now know why.

Flashback Friday - New Years

2011-12-30T14:39:00.000-07:00

Jack's first New Years Eve, December 31, 2009. This picture cracks me up.. especially the nice hole we cut to open up his footie pajamas for his oximeter probe.

Hope you all have a wonderful and safe weekend! Here's to 2012!

A Reflection of 2011 (in words)

2011-12-29T18:53:00.002-07:00

What a year!

We went into January consumed in our RSV isolation. We were pretty strict, although not as strict as the first year. We didn't take Jack out in public and he was never around kids for those 8 months... unless he ran into them at the doctors office! I remember cherishing the couple of "warm" days where we got to take a walk and get some fresh air. No one tells you how hard RSV isolation can be, but emotionally, it's one of the big hurdles to get through once leaving the NICU. And it's often not talked about. To read more about RSV lockdown, click here. Since I was Jack's primary caregiver, I was also in the same isolation. I tried to get out a few times a week, always with hand sanitizer in tow.

Two big things happened in April. For physical therapy, Jack got his gait trainer. It was the beginning of Jack's personal freedom and it coincided beautifully with the end to RSV lockdown. We were bubble people no more! I will always remember visiting Jon at the Capitol where he was working. Jack zoomed all over the hallways in his new walker. We were so proud. Personally, the end to RSV isolation was incredibly freeing for me. I began to think about life beyond our Clancy compound.

In May, Jack turned 2. We had a couple small parties to celebrate our miracle boy. We couldn't believe that two years had passed since the tragic day of his birth. And for this birthday, we really allowed ourselves to celebrate it in the moment. Jack's 1st birthday was a bit bittersweet, but this year, we left the old behind and allowed ourselves a sigh of relief that Jack made it to his 2nd birthday. We were so very blessed.

Right at the end of May, we headed to Seattle Children's Hospital for a tube weaning intensive. We spent two weeks in Seattle. Not only did we get to enjoy the city, but Jack returned home as a full-fledged eater! Words will never be able to express how much this means to us and we will never, ever take the ability to eat and drink for granted. Jack being able to eat is most definitely one of our top 2011 highlights. To read Jack's full tube-weaning journey, click here.

The summer of 2011 was filled with one word: travel. We traveled everywhere. It was exhilarating and exhausting all at the same time. We zipped across our big state numerous times and spent more time out of our home than in. Countless hours in parks, at farmer's markets, eating out, and laying in the grass... these filled our calendar. Just typing that sentence makes me long for those glorious, carefree summer days.

During this time, Jon was working on his very special project, which we eventually unveiled this fall. A book about Jack's micro-preemie beginnings. It was a very exciting time in our lives. I was so proud at the amazing work that Jon put into writing this incredible book and can't wait to see it get published and into your hands!

While daddy was working on the book this fall, Jack worked tirelessly at one thing and one thing only: walking. He was so focused. In fact, he was so focused that he quit talking and was quite frustrated most of the time. We wondered where our sweet Jack had gone and why he wasn't talking and using his words anymore. We consulted our therapists who assured us that with a history as complex as Jack's, he was just working that much harder to reach his goal. He had no time or energy left for anything else. He was determined.

Then, one day, he took off. We have never felt relief like we did on that day. Our Jack was flying solo. And that, my friends, is most definitely the highlight of the year for us.

Overall, we really feel blessed. Jack is healthy. Yes, we are still working on many things. Jack is still in occupational, physical, and speech therapy. He still visits the doctor quite frequently. But one of the things that sticks out to me about this past year, is that Jack had zero surgeries. That, in and of itself, is a call for huge celebration! We pray that Jack continues to growth in strength and health.

We can't wait to see what 2012 will bring! Thank you for staying with us and encouraging us along the way!

A Reflection of 2011 (in pictures)

2011-12-28T18:55:00.000-07:00

This is hard, but I'm going to attempt to pick my favorite Jack pictures from 2011. Watch out. Cuteness overload ahead!

January:

February:

March:

April:

so long RSV isolation!

visiting daddy at the Capitol

May:

Happy 2nd Birthday, Jackpants!!

June:

Went to Seattle Children's Hospital for their hunger-based tube weaning program.

and it was 100% successful!

We tried so hard to get Jack to wear his glasses... still on our incredibly long to-do list :)

cutest shirt ever

July:

best swimsuit ever

got to WALK! over the finish line of the Missoula Marathon

trip to Glacier National Park

probably my favorite, all-time picture of Jack

August:

September:

spent many hours swinging at the park

wait.. this just might be my favorite. ever.

ee-i-ee-i-oh

whoa, wait! this is my favorite!

October:

best costume ever

December:

Come back tomorrow for my Reflection of 2011 (in words)!

Surprise!

2011-12-26T19:41:00.004-07:00

We decided to surprise Jon's family, that lives three hours away, on Christmas. The surprise was pretty much priceless when we walked in the door and said "surprise!" It was so funny to watch the semi-confused looks (is this real?), a few seconds of silence (letting it sink in), then laughter and happy tears.

We arrived just in time for Christmas dinner. Perfect.

Posting will be light the next few days. We are having a great time and Jack is walking all over this big house, exploring and reveling in all the love and attention from Nans, Pops, aunts, uncles, and cousins. One of the main reasons we decided to surprise everyone is that we just HAD to meet our two new, beautiful nieces who are still just days old. We love them so much already!

Hope you all had a wonderful Christmas!

Merry Christmas! Love, The Bennions

2011-12-23T08:12:00.001-07:00

As we celebrate Christmas and close out 2011, we can't help but feel grateful for the progress Jack has made over the past 12 months. Beyond being cute and fun, he continues to teach us about what is important in life. We want you to know we are thinking of you and hoping you have a merry Christmas and happy New Year.

Love, The Bennions

Glory to God in the highest, and on earth peace, good will toward men." Luke 2:14

Wordless Wednesday?

2011-12-21T14:06:00.003-07:00

I'm letting yesterday's post sink in. It's not news to me, but telling the world is something that I've debated about internally. We don't want Jack treated any differently than before. We don't want pity or anything of the like. We just want understanding and a place to bring awareness to extreme prematurity. And your support. Always. That is what we need.

As someone on Facebook said - this diagnosis "doesn't change Jack, nor does it define him."

Amen.

So, almost a Wordless Wednesday post, without actually being wordless. I guess that's just how I roll.

P.S. Winter Wonderland here in Montana! Just in time.

The Diagnosis

2011-12-20T10:06:00.000-07:00

I was a little taken back when I received the report. At the top, it listed in plain sight:

Primary Diagnosis:

prematurity; cerebral palsy; hemiplegia affecting left side

secondary to prematurity and hypoxic ischemic encephalopathy

with global developmental delay status post VP shunts bilaterally

for hydrocephalus

Finally, a diagnosis.

Up until that email, we have never received an official diagnosis for Jack from any doctor or therapist, with everything spelled out for us in that way. I don't really know how it's never come up. At one point, we tried to push Jack's neurologist to just come out and say it after looking at some MRI results - the dreaded CP (cerebral palsy) diagnosis. He refused to say it, because he deemed the term "too broad". I can see where he is coming from. The more I learn about CP and how it varies immensely from individual to individual, the more I know that a one size fits all diagnosis doesn't make sense.

We've known for quite some time that Jack has many, many medical issues and we've been OK with never hearing exact words. We've known. We talk about it a lot. Mostly in the sense of what it will mean for Jack's life and the things he will have to overcome. It breaks our heart to see him work so hard to reach milestones, but then again, he is one of the happiest little guys, always putting life into perspective for us.

We love you, Jackpants.

Little Christmas Party

2011-12-19T08:29:00.000-07:00

I had no idea how Jack would act at his very first little Christmas party. The plan was to meet up with some friends and put together gingerbread houses. I knew Jack probably wouldn't sit long for this activity, but I still wanted him to be around other little people.

Can I just say how it still feels odd having him out during the wintertime? I have to remind myself constantly that it's OK now. I'm not breaking any rules. It's such a monumental shift when you can leave RSV isolation behind.

So now to what you really came to see... pictures of our little Christmas party.

Happy kids.

CHEESE!

Beautiful kids.

Tired kids.

Yep, Jack fell asleep about 30 minutes into the party... then proceeded to sleep for two hours!

He missed out.

And finally, a lunch break.

Our little Christmas party was fun and the gingerbread houses turned out great!

Maybe next year Jack will be awake for it.

Flashback Friday - Preemie Clothes

2011-12-16T14:05:00.000-07:00

I spent some time going through our NICU files today and came upon this picture. I remembered that we chose to wash and dry Jack's tiny preemie clothes at my parents house so they wouldn't get lost forever in the huge hospital laundry system. I've kept many of Jack's NICU outfits. They are really significant to us because being able to wear clothes in the NICU is a really big deal. For our hospital, it meant that Jack had at least reached 3-4 pounds and could regulate his body temperature. It also meant that he was in a a real crib.

I remember Jack was just swimming in those clothes, they were so big. When I look at them now, I am in awe at how tiny he was.

Sometimes All Ya Need

2011-12-15T12:50:00.000-07:00

Sometimes all ya need to do is look at a few cute pics and you immediately feel better.

Like this one:

Heart melting.

Or this one:

Love his messy hair.

Or this one:

Whoa. Beautiful boy.

Or this one:

December favorite.

O Christmas Tree

2011-12-14T13:54:00.003-07:00

Our Christmas tree is filled with special ornaments. Whenever we travel somewhere, we get an ornament to remember our trip by. These days our tree is half full of our travel mementos and the rest is Jack's ornaments. They are so cute.

newest one from Grams and Cheeks

from our friends in Finland

Baby Jack's 1st Christmas

love the picture ornaments

Jack's hand print during his 1st Christmas

lots with his name

newest ornament from Grandma Bennion

our little star

Superman

Love em'.

I also love our stockings. Each one was made by Jon's mom and they are all different from each other. In fact, each person in Jon's family has a stocking made for them, each unique. They are really beautiful and sparkle when reflected against the tree lights. One day, we will have a big mantle for these to hang on.

this was made in 1978!

Is it bad to love mine the most? Cause I do.

I hope you all are enjoying these last few days til Christmas!

A Case of the Tuesdays?

2011-12-13T15:53:00.000-07:00

Pure exhaustion.

Totally describes how I feel today... err... the past couple of weeks. It's not always like this, so I take comfort in that. Blogging will be light as I get some rest. Hoping for some more energy for tomorrow and time to catch up on all my favorite preemie blogs that I haven't had the chance to read in awhile.

A lot has been going on with Jackpants and a lot has been going on with me. I am still struggling to find this (unattainable?) balance of being a mom to a kid like Jack and following my own desires and interests. Those two can't always coexist and Jack always comes first, so adjusting my expectations is happening quite often these days.

Thanks for always being there with a listening ear. Really. It means a lot.

First Steps

2011-12-12T14:42:00.000-07:00

I got the most thoughtful letter in the mail last week and wanted to share it with you all.

I was so touched by this. Thanks, Julie!

Flashback Friday - J is for... Jack

2011-12-09T12:53:00.001-07:00

We'd often come into the NICU and find little handmade signs hanging on Jack's incubator made by the nurses. These symbols, although small, were really significant to us. Someone was taking the time to encourage us and show that they were rooting us on. Jack was just as real of a baby at 23 weeks as he would have been if born full term.

Jack Gets a Haircut... from daddy.

2011-12-08T14:09:00.001-07:00

Last night after bath time we put Jack in his high chair and got down to the haircut. Two things we learned: 1) It was good that we had a DVD going because Jack was SO not into us messing with his hair. He definitely needed the distraction. And 2) we need to purchase some actual sheers... our scissors were really bad crafting ones. Not good.

What... what's going on?

Something feels different...

Before:

After:

It's Time

2011-12-07T16:38:00.001-07:00

Isn't that sweet?

We've been in Missoula for a few days and just got home. We had a good time with Grams and Cheeks, ate at some yummy restaurants, and Jack had a great dentist appointment. But the main thing we took away from tour trip is that we finally realized something...

....

It's time.

... for a haircut.

Say goodbye, shaggy, borderline hippie/mullet hair. Time to go.

Haircut is scheduled for after bath time tonight. Wish us (Jon) luck!

The Dentist: Round 2

2011-12-06T14:48:00.001-07:00

We had a dentist appointment today. You can read about Jack's first experience here. Let's just say that I was a little anxious, but no where near how I felt the first go around.

I am so glad we took the time and sought out a dentist that is very familiar with preemie issues relating to teeth. We travel 3 hours to see her, but it's worth it. She was so encouraging! The verdict? Jack has no cavities, has normal preemie teeth discoloration, no decay, and his 2 year molars are still trying to come in. All this is a pretty good report for a kid who won't let us brush his teeth, was tube fed up until May of 2010, and was given drugs that essentially ruin baby teeth (life-saving drugs, no doubt).

We talked a lot about brushing Jack's teeth. It's one of those hard things where we have to weigh the benefit of brushing, with the progress he has made in the feeding therapy department. For a kid who has severe oral aversion (won't allow stuff in his mouth) and will gag and puke if a toothbrush is used... well, it was a good dental visit. He did gag and puke today, but it was toward the end of the appointment when we were pushing our luck and taking a bit more time than Jack would have liked for an instrument to be in his mouth.

The great thing is that he immediately drank a cup of water after puking! He never would have done that 6 months ago. Our boy rarely drinks, so that was cool to see.

Jack didn't get his teeth cleaned today. He is still a bit too young for that. When he does, I'm sure it will be under general anesthesia... unless he overcomes his fear. Either way, we'll do what we have to do.

As we left the appointment today, Jack said "bye bye". See ya in 6 months, doc!

When Jack Met Santa

2011-12-05T13:52:00.001-07:00

No RSV lockdown equals getting to meet Santa! We were so excited!

Daddy??

Yep... that's pretty much how it went down.

We made things better by taking a ride on the carousel.

Cutie

Flashback Friday - Bed Rest

2011-12-02T15:25:00.001-07:00

I was randomly looking through some computer files when I came upon "cell phone pics". Jon took this picture while I was napping one day, about 21-22 weeks along in my pregnancy. I spent the majority of my five months being pregnant on that very couch, in that very position. Sometimes I would convince Daisy to snuggle with me.

When I came upon this picture randomly, my heart kind of sank. I had no idea what was in store for us.

When your child starts walking at 31 months

2011-12-01T13:57:00.001-07:00

Sometimes there are goals that are so elusive, so sought after and fought for, that it feels like you are stuck in a forever whirlwind of the same, never quite able to reach them.

Jack was a scooter for so, so long. He never crawled. He started scooting around on his bottom about a year ago. It was a HUGE moment. He could move! But after awhile, I wondered if he would ever be able to make it beyond scooting. That is so human nature, isn't it? Always hoping, searching, and longing for the next best thing?

I loved that he could move. But I wanted more for him. I believe every parent feels this way. I could tell how frustrated he was and that frustration was affecting everything from his day to day mood, to his development in other areas. I just knew he needed a breakthrough. WE needed a breakthrough.

Then our Miracle Jack starts walking at 31 months.

It was slow, tentative, unbalanced steps at first... usually going back and forth between mommy and daddy. He now feels confident enough to walk around our home. He is still working on standing and balance and add in some new foot braces to get used to. He only tentatively takes steps in the outside world, but I know that will come in it's own time. When your child starts walking at a later stage in the game, it's like the sameness suddenly ceases and every single little thing is new and exciting again. We are in a whole world of possibility.

I was getting ready in our bathroom the other morning. I'm pretty sure I was brushing my teeth or something when I caught Jack walking down the hallway out of the corner of my eye. It took my breath away. Number one, out of total fear that he was going to crash and hurt himself. And two, out of complete shock to see him actually WALKING.. like he just decided "hey, I want to go to my room." When you wait, hope, pray, and work for something for 31 months, it will take awhile for it to settle in that you are not, in fact, dreaming.

I'll say it til the day I die - I don't take anything for granted when it comes to Jack. Nothing.

Snow Day!

2011-11-30T15:13:00.001-07:00

Grams and Gramps brought a Jack-sized sled with them for Thanksgiving and we had perfect conditions for a little sled around our neighborhood. Before heading out, we got Jack properly bundled up.

So stinkin' cute.

At first, Jack didn't quite know what to think.

But he slowly started to crack some smiles.

Daisy was in heaven as she got to chase the sled around.

Sledding is fun!!

Then we got really brave and started pushing Jack back and forth between us. He loved it.

As I look out the window right now, snow is coming down. Maybe we'll bust out the sled again...

Advocating For Your Preemie

2011-11-29T18:12:00.001-07:00

We are on our way to a couple therapyappointments in a different town. Since Jack's birth, we've been dealing withthe reality of living in a small rural state. Minimal specialists, especiallywhen it comes to feeding therapy, have made things frustrating to say theleast. We thought we had to settle for mediocre therapy. We felt stuck, likethere were no choices.

This didn'tleave us with much hope for Jack's success and has caused more headaches andfrustration than I'd like to admit.

About a month ago, being totally fed up and ready to give up, weheard that a feeding therapist had just moved to the state. We immediatelycalled and got a session. This propelled us. We decided once and for all, to beJack's biggest advocates. In doing so, we let go of some therapists and soughtout new ones. We've done this before with doctors. It's never beenpleasant, but always been worth it . I don't know why it took us this long torealize that we had plateaued when it came to therapy. Things were easy,predictable, and safe. But they also weren't producing results.

We now onlyhave one therapist left from our old team. We are choosing to seek out the bestfit for Jack. If that means traveling for three hours, so be it.

Things we'velearned:

1) Feelings aresecondary to the health and well-being of your child. I know that soundsridiculously obvious, but firing someone never feels good. It's awkward. Butsometimes, it has to be done.

2) You expectall medical professionals to know their stuff. They've been through years andyears of schooling and training. But every now and then, you come acrosssomebody that doesn't seem to know what they are supposed to do or have thedrive to do it well. That is your gut telling you as a parent that it's probablynot the right fit. Listen to it.

3) Almost notherapist has ever willingly offered up that they weren't qualified to handleJack's very specific needs. We would much rather hear from a therapist thatthey didn't feel comfortable, rather than having to terminate the relationshipbecause of our lack of confidence. Only one person has ever told me she didn'tfeel qualified in a certain area of therapy. I could have hugged her when shetold me! Since people don't seem to be willing to admit they may be wrong forthe job, you will have to advocate even more so for your child. I know this issometimes difficult because often, we are assigned therapists without muchchoice. Still, don't let bureaucratic hurdles get in the way.

4) Talk toother preemie parents and find out what works for them. We found out about ourfeeding clinic through another parent, not our doctor. We found our new feedingtherapist through a friend, not a doctor or another therapist. Talking to otherparents helps immensely!

We are stilllearning these lessons every day. Many times it's trial and error, but we arehopeful in our new direction.

WARNING: Pictures of food and cuteness overload

2011-11-28T14:10:00.001-07:00

Thanksgiving. What a great day. We pretty much just watched in amazement as Jack walked all over the house. This is his look of determination right before he propels himself forward to walk.

Cutie

He doesn't have much time to cuddle anymore... he wants to go!

Jon cooked an amazing meal.

Mom brought one of my favorites

Jon managed to not chop off his fingers.

I know. We are so hilarious.

reading books

playing with toys

and changes into comfy clothes...

What a wonderful day.

Yummy food.

mmm....

Seriously.

In Gratitude - Part 3

2011-11-25T14:36:00.001-07:00

“Iam thankful that we are both alive and well and we owe that to the amazingmaternity and neonatal staff. I am thankful for the UK's National HealthService who gave us those staff.
Lexie Wilson
Born 30 weeks byemergency c section
2lb 4.5oz / 1030g
Mum and baby bothsurvivors of the deadly pre eclampsia.” -Katherine

“When I had Samuel at 24 weeks, I couldn't imagine beingthankful for anything related to his extreme prematurity. I washeartbroken, terrified, angry, and exhausted. My child was sick andfighting more medical issues at one time than a cancer patient (Iknow...because I have been one.)
However, as timepassed, I realized that I didn't have a few things to be thankful for - instead, his prematurityopened up a world of thankfulness that I hadn't known before. How can youadequately express how grateful you are for your child's life? Andit wasn't just his survival that I was thankful for...each month I found myselfecstatic over little and big things alike: the first time he wore clothes,the first time he took a bottle, his first ride in a car seat, the day heFINALLY came off the oxygen, and of course, every milestone that he workedso hard for....rolling, sitting, crawling, and walking. I can't say thatthere is one thing that Iam thankful for in regards to Samuel. There's just too much to say. Instead, I am thankful that this experience has taught me to appreciate all ofthe things I never would have otherwise...the things that the average parentdoesn't KNOW to be thankful for. I am thankful to be thankful.” -Sarah

“Iam thankful that…you were born with such might and ready to fight, you canfinally breathe all by yourself after all those attempts and your lungs allowme to hear you cry. I am thankful you can see, you can hear and you havegood muscle tone. I amthankful all of your surgeries were all a success…I am thankful you like toeat, your weight gain has amazed us all. I am thankful…for the strength Godgave us to get through all the ups and downs of your NICU stay, for everyonethat has come into our lives after your birth, for our friends' generosity andkindness, for every doctor and every nurse that has taken care of you since theday you arrived. I am thankful for every person who has helped feed, change,burp and hold you, for every smile you give me and for every sound you make,especially your coos and ga-goos, for our snuggles and all the kisses you letme give you, for your smell, even when after you’ve spit up all your milk. I amthankful for your daddy who loves me unconditionally and for your sister whounderstands so much. I am thankful you have made me such a strong person, abetter person and overall a better mom. I am thankful God gave you to me,our family is now complete.” -Angelica

“To say that I am thankful for Kai's health isan understatement. From day one he has given me so much to be thankful for. Ialways wanted a little boy and I am extremely thankful he chose us as hisfamily. Although he came into our lives with an unexpected arrival there is notone thing I would change about his journey so far. Its all the little things,all the ups and downs, all the support, all the strength and courage, all themilestones that makes me realize how lucky and thankful I am that Kai is who heis.” -Ashley

“I am thankful that my son, Jack, is here. The past year,

since his early arrival at 28 weeks, has beenstressful and full of anxiety, but looking at him and his smile makes it allworth it! I'm especially thankful that it finally feels like we mightjust get to keep him! (I'm sure most preemie parents know that feeling.)" -Heather

“This Thanksgiving I amthankful for Strength.

Owen's strength to live.Strength to endure all he has endured.

Strength to fight.

Our family's strength tobe able to handle whatever life throw our way.

I am thankful forperspective.

God has given me amazingperspective

And I thank God that weare truly able to

be thankful for thelittle things in life.

Our boys are home,alive, and strong.

I am thankful!” Kathleen

“First and foremost, I am extremely thankful for my son'sfighting spirit. Somehow, someway, he survived for about six to seven weeks inutero after my placenta stopped working until his emergency delivery. CaydenRuss arrived in this world weighing 1lb 5.9oz and was 12.5 inches long. Caydenfought hard during his 124 day NICU stay, struggling to overcome what should havebeen insurmountable odds. His fighting spirit still shines as he works toovercome the difficulties his prematurity have presented for him. I'm thankfulfor the little things....the little things that we were told we may never getto experience with Cayden. I'm thankful for his charming smile, his infectiousgiggle, his sweet hugs, and his open mouth kisses. I'm thankful that I get tosnuggle him every night and for his little hand as he holds mine. I'm thankfulas I watch him walk across the room. I'm thankful that I get to watch him growand develop and continue to "beat the odds" at his pace, especiallywhen he exerts his independence. My heart swells every time he blows me kissesor as he makes his little index finger and thumb in the shape of an"L" to sign in his modified manner "I Love You". I try sohard not to take those little things for granted and appreciate them for whatthey are, everyday miracles. Things could have been so different, yet, Godchose me to be his mama, and for that, I'm the most thankful. It's the best jobin the entire world. I love this little boy more than words can express. He'samazing!” -Tami

“Ourtwins were born at 23 weeks 5 days. They both had PDA surgeries in theNICU. After 133 days, we were able to bring both Camdyn and Cade homefrom the hospital. I am thankful for advances in the field ofneonatology as well as for the power of prayer. I am thankful that bothof my twins survived. They are now 19 months old and doing verywell. I am thankful that my son, Cade, now eats! I'm thankful thatboth of the twins are healthy and meeting their milestones. We are thankfulevery day for our little miracles.” -Michelle

This concludes our In Gratitude series. This series has probably been the most touching project we've ever worked on here at Life with Jack. Thank you to all the preemie parents who helped us out. You inspire us! Have a wonderful weekend, everyone!

In Gratitude - Part 2

2011-11-24T12:17:00.001-07:00

“I'm thankful for two beautiful smiles that I almost nevergot to see. I'm thankful for every kiss, every hug, every word, everystep, every 'first'- because they all mean so much. I'm thankful forhaving a greater appreciation for life, for love, and for my children. Iam thankful for the ability to find a huge amount of joy in the smallest,everyday moments. I am thankful for the doctors, nurses, researchers,etc. who have worked so hard to give me the beautiful, happy babies I havetoday. I am so thankful for miracles.” -Alyssa

“I am thankful for a great first day with braces for ourlittle guy! I was up and down all last night worried about how Ryan wasgoing to handle the initial “first steps” in his new braces! He did sowell……I almost cried. No arguing from our little head strong boy….” -Amy

“Born at 25 weeks, 3brain hemorrhages, non-communicating hydrocephalus (with 3 shunts), subglotticstenosis, tri-plegic cerebral palsy, infantile spams, epilepsy, cortical visionimpairment, and 35 surgeries so far.......I am thankful for every single secondI get to spend with my daughter, every giggle she shares with me, every tempertantrum she throws, every poopy diaper, every sleepless night, every trip tothe clinic, every stay in the hospital. I am thankful that unlike so manyother moms, I got to bring her home. I get to watch her grow. Ihave been given the precious gift of time.” -Shannon

“It'shard to know where to start with the things that we are thankful for this year.We are thankful for our twin boys, Cohen and Carter, born at 25 weeks. One athome with us and the other in heaven with Jesus. After 130 days in the NICU weare so thankful to have Cohen home with us. We are thankful that we can dresshim, change his diaper, and snuggle him whenever we want. We are even thankfulthat we get to get up during the night with him. We are thankful for everysingle obstacle he has overcome from kidney failure, premature lungs, being ona ventilator for 2 months, infections, chronic lung disease, and an enlargedheart. We are thankful for all of his progress, whether it happens according towhat he "should" be doing or not. We are thankful for everything hedoes. We are also thankful for our other son, Carter, who gets to be withJesus. We are thankful for the time that we got to spend with him, counting hisfingers and toes and talking about how perfect he was. We still have an ache inour hearts for him, and we miss him every day, but we are thankful that we havethe hope of seeing him again some day. We are thankful that the Lord gave uphis son so that our son gets to be with him in heaven.” -Janna

“We are thankful that our son Zachary, aformer 26-weeker, is happy and getting healthier every day. Although we were told numerous times that hewouldn’t survive or could have severe physical and developmental problems, hehas proven everyone wrong and is home and thriving after 249 days in thehospital. We’re thankful for the talented and compassionatedoctors and nurses who cared for him and for his toughness and determination inthe face of such long odds. We’re also thankful for all the support we’vereceived from family, friends, and strangers who have helped us navigate thisstrange and difficult journey called prematurity. We pray for all ofyour preemie miracles out there and give thanks for their perseverance andcourage in continuing to overcome their early births.” -Erin and Jerry

“We are thankful forthe amazing care our girls received while in the NICU. We are thankfulfor the Ronald McDonald House that was available to us during their stay. We are thankful for the other preemie parents we have met on this journey. We are thankful Madyson and Makayla are here! They have taught us somuch. To live each day to the fullest. To celebrate everymilestone, no matter how small. We are thankful for all the love, supportand prayers from our family and friends. Our preemies changed us foreverin a good way. We are better parents because of them. God Bless!” Stacey

“My son Noah was born at 26/4 weeks gestation andI am so thankful for the way he has single-handedly changed my life. I amthankful for the way he fought (and continues to fight) like hell each andevery day of his life for what happens effortlessly and naturally for others.For his laugh and cheerful, curious, perseverant personality. For his kisses& hugs, his handful of signs, his chubby thighs, how smart he is, the wayhe loves baths, our cat and reading books. For the people that his prematurity hasbrought into my life - doctors, nurses, therapists, support group members andnew friends. For the way he has made me a more accepting, patient and creativeperson. For the way he has forced me to become a fierce advocate for everythinghe needs and deserves. For the excitement and celebration that each newmilestone and discovery brings. For the way he has made me aware of what'sreally important and for being able to stay home and raise this precious giftand miracle.” -Erin

“I am so thankful toGod, for giving me the best gift ever: My preemie, Oswin. Before hecame into this world I knew what love was, but didn’t realize just how much you can love someoneuntil I held him in my arms for the very first time; He was so small and sofragile; yet so strong as he survived being born 2 months early. He inspiresme. I am thankful for having him in my life and each and every day I lookat him and realize how lucky I am to have him, because he has made me a betterperson, he taught me how to be strong, how to be patient, and that it’s okay to fear sometimes. My son gave methe meaning of life. I love him with all my heart, with all my life.” -Keila

“Iam thankful for NICU nurses. They make the world of a difference with aNICU stay and can really be an uplifting presence. Both of our boys werein the NICU and both times it was incredibly hard. The nurses are trulyamazing. They were helpful and encouraging with breast feeding and evenwashed pump parts on occasion for me, they brought me juice or water when I wasparched, became my best friends for that period of time, told me about theirlives and provided a distraction, and always had a friendly smile! Most of all,they took great care of my babies and I never had to worry about them while Iwas away. I will always be thankful for NICU nurses and they will alwayshold a special place in my heart!” -Gaby

In Gratitude - Part 1

2011-11-23T12:25:00.001-07:00

When I've paused to think about what I am thankful for this year, beyond the amazing strides Jack is making (I could post about that for, literally, the rest of my life), my thoughts immediately go to this amazing little preemie community we have here. I've especially been grateful for the support, encouragement, and camaraderie you've given us. You have cheered us on, been a virtual shoulder to cry on, and have helped create a space for us to honestly share our hopes and dreams.

I feel like I have a wonderful platform to brag about Jack each and every day, but I wanted to open up this blog to hear from you. To hear about what YOU are thankful for this year. In doing so, I've received some of the most touching and poignant emails and photographs.

In Gratitude:

"I am thankful that after 213 days in the NICU my son Landon a 24 weeker will (should be) with us at home on thanksgiving. We get to be a family outside of the NICU!" -Rebecca

"Veronicawas born at 24 weeks and 4 days and each and every day, I am thankful that sheis alive, healthy and thriving. I am thankful that she stayed inside ofme for 6 days after my water broke at 23 weeks and that I received steroidshots to help mature her lungs. I am grateful for my breast milk which Iknow played a crucial part in Veronica doing so well. I am of coursethankful for the wonders of modern medicine which allowed Veronica to live andfor all of the amazing doctors and nurses who cared for her during her 119 daysin the NICU. I am grateful for our family and friends who prayed for andsupported us....and above all, I am thankful to God every day for bringingVeronica into our lives." -Marcie

"Thereare SO many thoughts that flood my mind when I think of all that I am thankfulfor regarding my two preemies. First and foremost, I am so thankful that theyare both here with me today, and every day. It is against ALL odds that I havetwo beautiful, healthy babies. I believethat every mother loves her children and as much as I would like to say that Ilove my babies MORE because of what they have been through, I know that mostmothers probably think they love their babies more than any other mom couldlove hers. But what I do believe is that I appreciate them more than I probablywould have had they been born full term. I am thankful for this. I take nothingfor granted. I am not a perfect mom andI certainly have times where I am pushed to my limits, exhausted, frustrated andworn down, but at the end of the day, I can’t help but look at my energetic 3year old, bouncing off the walls, and thank God for that, or my sweet, chubbycheeked daughter with her pretty bows, and thank Him for that as well. For my family, Thanksgiving does not comeonce a year, it is every day. Everynight before I drift off to sleep, I thank God for my babies. I could write a book about all the things Iam thankful for, but to sum it up, here are a few; I am thankful for: medicaltechnology, patience, nurses, doctors, RT’s, hearing my son beg me for foodwhen I once thought he would never eat, hearing my baby cry after having novoice for so long, appreciation, antibiotics, my breast pump (even though IHATE pumping, I am thankful that I could provide milk for my baby before shecould eat), sleepless nights (because so many nights were spent away from mybabies when they were in the hospital), glasses so that my son can see, familyand friends who have supported me along the way, hand sanitizer, drive thrupharmacies, and most of all, LIFE" -Chelsea

"Iam thankful for every single dirty diaper I change. I am thankful every time mylittle man wakes me up in the middle of the night. I am thankful for hisfingers and toes that look just like mine. I am thankful for every bath heneeds. I am thankful every time he wants to be rocked to sleep. I amthankful for quiet mornings we spend together alone. I am thankfulfor his crazy, old man eyebrows. I am thankful for every little smirk he makesthat explodes into a full face smile. I am thankful for every time I get tochange his clothes. I am thankful for every minute he spends nursing. I amthankful for his big, chubby cheeks and long, beautiful eye lashes. I amthankful every time he stares into my eyes. I am thankful for every load oflaundry. I am thankful every time he falls fast asleep on my chest. I amthankful every time I can pick him up whenever I want to. I amthankful for his big, wet, slobbery kisses. I am thankful when his big sisterasks to holds him. I am thankful for every breath my son takes. I am thankful Iwas given the chance to be Landon's mamma." -Brandi

"Weare thankful for the Doctors and Nurses that helped through our very tough timein the NICU. Without them and the way that they carried themselves I am notsure we would have made it through. Tristan was born on 12/25/09 so we are alsothankful that we get to spend holidays with him and our families since we werein the NICU during Christmas." -John

"I am thankful for little everydaymiracles. Every day that my son wakes up and does something the doctor'ssaid he couldn't makes me smile. My son William was a twin born at 22weeks and 5 days. His brother was born 39 hours later and passed awaywhen he was 5 days old. William was given no chance of survival and nochance at a normal life. Last week at 19 months old William took hisfirst steps." -Breanna

"ThisThanksgiving my mentality towards the holiday has changed substantially. Thisyear thanks are given to the world surrounding my son. I am thankful for his lifein general. When the obsticals were laid out in front of us I would never havethought he would come through them with flying colors. I am thankful for hisresilience as he grew from that 1 pound miracle to the now 9 pound little man.I am also thankful for all entire staff at the Riley Children's Hospital. Thereis such a love to those people that saved your child's life. I can't forget thefamily and friends that supported us, visited us, and prayed for our familythroughout the past 5 months. Mostly I am thankful for my son. He has opened myeyes to a whole other world and what I want to do with my life. I can't evertell him thank you enough. Happy Thanksgiving!" -Jordan

"InApril of this year my daughter Harper Elise was born 4 months early. Bornat 1 lb 6 oz and 12 1/2 inches, we knew her battle would be a significant one. After two months on a ventilator, PDA ligation, renal failure, Stage 3ROP, IVH 3 and 4, numerous transfusions and a myriad of other complications wewelcomed her home on August 7, a week before her due date. Her follow-up carehas been demanding but we have received great news regarding her brain bleeds whichare stable, and her ROP is gone with the help of Avastin, a new procedure usedinstead of the customary laser treatment. This road is not what weenvisioned when we decided to have a child, but it was the road God chose forus to walk. She is truly a miracle. Each day brings new joy as sheis discovering her world. My husband and I could enjoy her cooing andsmiling for days on end. We don't know what we did with all of our timebefore Harper! We feel so so blessed to have her home with us this Thanksgiving. " -Kristal

More of our "In Gratitude" series tomorrow...

We're THAT Kind of Parents

2011-11-22T13:51:00.001-07:00

Jack doesn't yet appreciate a good costume, but still, we dress him up and whip out the camera. Jon went to China in October. He brought a special gift back home for Jack and this weekend, we finally got around to dressing up our very own China doll.

hmmm... not so sure about this whole "growing his hair out and see what happens" plan...

P.S. This week I am working on a special post for Thanksgiving. Would you help me out? I'm asking any parent of a preemie to send me a short paragraph about what you are thankful for (in regards to your preemie) and a picture to jessi@lifewithjack.com. Thanks guys!

Flying Solo

2011-11-21T08:09:00.001-07:00

We've waited and dreamed of this day. We were told there was a good chance this would never happen. To say we are all giddy around here would be an understatement. No words could possibly describe the significance of this video and what it means to us.

Enjoy!

Flashback Friday - Surgery Days

2011-11-18T14:05:00.001-07:00

Surgery days were always the worst. There's the build up. You can't eat. You can't sleep. You're so nervous. Before surgery, you sign all the consent forms and hear about the worst case scenarios. You speak with all the doctors (anesthesiologist, surgeon, etc.). Then you have to do your "goodbyes"... sending your baby off, after hearing about all the worst case scenarios.... Then you wait. Waiting rooms are horrible places. You watch the clock tick SLOWLY by. You keep looking at the door, wishing the Dr. would just walk through it already with a smile on their face.

Jack's had seven surgeries so far. Each to varying degrees of difficulty, but none have been easy. These particular pictures are from when Jack had his hernia operation - probably the least serious of his operations, which is why we were able to crack some semi-pleasant smiles in these pictures.

Before surgery snuggles:

The dreaded waiting room

Doing anything to get your mind off of what is really happening...

Post Op

Big Day

2011-11-17T13:30:00.001-07:00

You can't get a bigger day in preemie land than today. World Prematurity Day is about spreading awareness. About honoring those born too early. About posting pictures of your preemie on Facebook and Twitter. My morning was was filled with reading the dozens and dozens of posts, blogs, and articles about today. I felt like I was having my own little support group meeting with people all over the world. It has been pretty cool.

I posted this on Facebook earlier, and I wanted to leave it here as well.

To those babies born too soon, we honor you. To those that didn't make it, we honor and remember you. To those struggling to survive the NICU, we honor you. To those in therapy day in and day out, striving to reach milestones with huge obstacles to overcome, we honor you. To those who have beaten the odds and inspire us with your determination, we honor you. To those who are thriving and making a difference, we honor you. Worldwide this year, 13 million babies will be born too soon. Today we observe World Prematurity Day.

Jack's tiny hand during his first week of life

For the Love of (cute) Hats

2011-11-16T13:31:00.001-07:00

Hats, oh hats. Jack didn't used to mind you.

Now... not into hats so much.

Sad face.

Cheer up, Jack. Don't you know how cute you are?

The Apartment

2011-11-15T13:39:00.001-07:00

A month or so ago I told you about the exciting news of my parents getting an apartment in our town. It has been so nice, especially when Jon has been traveling for work so much.

Jack's favorite place in their little apartment is on their bed, where he can roll around and play with all the cool toys that Cheeks (Grandpa) finds. Right when he arrives, he goes straight to the bed and we get out his treasures (TV remote, books, tambourine, maraca, and a toy - stacking rings - to hurl across the room)

Jackpant's favorite toy at the apartment? The remote.

Of course, he also loves to read his books.

Can I take some time right now to mention just how awesome these shoes are? You all can probably imagine how hard it is to take a 2 year old shoe shopping. Well, with these dandy shoe bottoms, all you have to do is use it to measure their foot to make sure the toes land in the "toe zone"! No lacing up required.

ahhh... rhythm instruments. Thank you for staying at the apartment...

ijplk,moklmk,0lo+/ (Jack Typing)

2011-11-14T13:48:00.001-07:00

I'm cracking up here as I try to type. Jack has wiggled his way next to me and wants to join in. He's always been fascinated by computer keys. The click, click, clicking sound they make. He has both of our old laptops to bang on and open and shunt. Still, he is way more interested in what mommy is typing and looking at!

So.. this will be short and sweet. There are some big-ish changes going on right now with Jack, specifically relating to therapy... more on that at a later time, but I wanted to say that we feel like Jack is so, so close to a breakthrough with his gross motor development. Anyone following our Facebook page may have seen that Jack took 30 steps IN A ROW this weekend!! That is, by far, the most. Ever. Last night he was walking back and forth across our living room. There was a lot of cheering going on.

It's a very surreal experience. We were told that Jack may not be able to walk, so when I watch what is going on, it's like I'm seeing a miracle unfold in my very own living room, in real time, and it's hard to wrap my brain and thoughts around what is happening. I will try to get a video posted sometime this week of Jack in action. It's pretty amazing.

Once again, I gotta say it - I am loving hearing from you through our Facebook page and through your emails! You seriously brighten my day! I am especially indebted to our close blogging friends who write about our journey into the world of publishing. Just a little bit ago, my fellow 23 week micro mom, Lindsay, posted the most wonderful and kind review of our book. You really should read it.

Hope you all have a wonderful week!

P.S. If Jack could type, I'm pretty sure he would type the following:

Elmo
Daisy
Read a book
Cheeks
Elmo
Outside
Bye Bye
quick! Daddy's cooking
No
Up
Walk!!!
Kisses
Elmo Elmo Elmo!

Flashback Friday - NICU Life

2011-11-11T13:40:00.001-07:00

This was a typical evening in the NICU for us towards the end of Jack's hospital stay. We'd try to stake out a comfy chair, bring it over to the isolette, and just cuddle with our little guy. We were at the point where we could take him in and out of the isolette ourselves and pass him between us. We knew how to read the monitors and were pretty comfortable with all the beeping and alarming. As much as the NICU could be, these were peaceful times. Sure, there were surgeries and unknowns ahead, but Jack already had three months under his belt.

Random Tidbits

2011-11-10T13:03:00.001-07:00

1) I am loving Jack's curly hair these days. He's always had curly hair, but it's never been long enough in the back to really see it. Of course, as soon as he lays on it or rolls around, it straightens. Part of me wonders if we keep growing it out, what will it do?

2) I've always felt bad for Jack when we go to restaurants. He can't eat the food on the menu, but still, he has to sit there for an hour or so, watching everyone eat. I mean, typical two year olds have a hard enough time keeping quiet in a restaurant, even with food as a distraction. We thought our days of eating out were over, but in a desperate attempt to grab some lunch one day with my mom, I brought in our portable DVD player. Crisis averted. What was interesting is that the other night, I glanced over at a table next to us and a mom was handing her child her phone, probably with a game on it. Don't we all just want the ability to eat out once in a while?

3) Did you get a chance to see this cuteness? I still can't get over how stinkin' awesome (and cheap!) his costume was.

4) We have a lot of new followers on this blog from our Facebook page and elsewhere, and I would like to welcome you all! I wish I could personally sit down with each and every one of you (with a cup of coffee or chai... maybe a baked good... or two) and just chat. I sincerely LOVE this little community and it makes my heart so happy to see it grow. We appreciate each and every comment that is left here and on Facebook and Twitter. Oftentimes, tears are running down my face as I read your encouraging and helpful words. Thank you! If you link to our blog on your own blog, please let me know in the comments section, because I would love to put you under our Good Reads section. If you have a blog button, even better. Just trying to share the link love! Sometimes I don't catch on right away, so that would be super helpful.

Did I mention how much I love you guys?!

Note to Self

2011-11-09T13:42:00.002-07:00

We decided to get out of the house for a couple hours today. To get some fresh air and to let Jack go to Story Time at the local library.

Whenever we are around other children, and I try not to focus on this, but I become all too aware that Jack is just not your typical child. He doesn't react the way the rest of the children do. His behaviors are very unique. He is shy and clingy. He doesn't listen to the story. But still, we go. Perhaps just being around the other kids is good for him. At least I can tell he is interested when they sing "Wheels on the Bus". That's about it. I want him to be around more kids as he gets older. He needs to be social. I just desperately want him to have normal childhood experiences and to enjoy them. Most of the time, and I'm being really honest here, he doesn't. It's hard for me to watch.

On the way out of Story Time, we pass by the little coffee kiosk inside the library. I see some baked goods being sold. I don't know why I do this, but I say "let's get a treat". I know he can't eat them. But still, I say it. I buy a treat. I desperately wish he would eat a cookie. It's like, if I pretend things are normal, then maybe they will be one day?

.....

Jack continues to straddle this invisible line (but clearly visible in my head) of typical and non-typical. Why can't I just let things be? I was really getting mad at myself on the drive home. Remembering how just earlier this morning, I was looking at statistics of 23 weekers and their survival rate. Why do I so easily forget? Where is my gratitude? Why my constant comparing?

Let it go, Jessi.

Let it go.

Neeeed Sleeeep...

2011-11-08T13:58:00.002-07:00

We're exhausted. There's only so much Pinterest browsing and movie watching one can do before brains completely melt and turn to mush.

We need sleep. Thank you and amen.

Yes, I found him sleeping like that.

On a side note - Jack seems to be through the worst and for that, we are thankful.

The Wandering Mind of a Micro Mom

2011-11-07T12:00:00.000-07:00

Jack got sick last night. And he woke up sick this morning. I've been fighting the urge to let my mind wander to worst case scenario. Do all micro mom's do this? I'm thinking that because of the trauma of the NICU experience and subsequent surgeries, it's hard for me to not jump to the worst conclusions when it comes to Jack's health.

Puking and fever? ... just HAS to equal shunt malfunction. Rapid breathing? Oh no. Not RSV! Or maybe he's having a seizure because he is so shaky? Maybe something even worse is going on (enter in flashbacks of rushing to the hospital and being told that my 23 weeker was in renal failure).

Never mind that Jack was diagnosed not too long ago with something that could perfectly explain his symptoms (CVS). No mind that the second we give him Zofran, he feels much better. We give him Tylenol, too. That helps. He seems to be content watching his shows. He wants to take a drink.

Still, my mind has a hard time with just letting things be OK. I can never get too comfortable with Jack's health.

Wouldn't it be nice to just chill sometimes?

Flashback Friday - Preemie Baby Anouncement

2011-11-04T11:47:00.001-06:00

When I found out I was pregnant, I started researching photographers for a newborn photo shoot. I wanted someone to take pictures right after birth and then in our home a week or so later. You know those amazing newborn photos that you see everywhere these days. The ones where the baby is sleeping on a soft blanket all posed like a little bundle of cuteness. I wanted to use one of those photos for our birth announcement, to send to our friends and family.

When Jack came so early, the idea of a cutesy photo shoot was obviously abandoned. We ended up having a shoot, but under much different circumstances.

We even debated sending out a birth announcement. Should we, when we are feeling so down and depressed about all of this? What if he didn't make it? But in the end, we decided that yes, Jack was worth it, even if the pictures weren't beautiful in the traditional sense. And it pained me to type in his weight and height. It's not something I'd ever imagined would be happening. Regardless, he was our boy and deserved the recognition and welcoming, just like any other baby.

How It Came To Be

2011-11-03T13:12:00.001-06:00

I didn't know Jon was writing a book.

During our four month NICU stay, Jon would write a weekly update that was sent to hundreds of people (who in turn, sent it to thousands of people all over the world). Readers seemed to appreciate Jon's candor. His humor. And they fell in love with our little guy - Baby Jack - so much so, that I remember many suggesting we write a book about our ordeal.

Fast forward two years later.

This May, when we were at Seattle Children's Hospital for Jack's tube weaning, and on our anniversary when we were exchanging gifts, Jon handed me a 3-ring binder. I opened it up and saw the first page which was a title "You Don't Know Jack: A Micro-Preemie Story." Below was a beautiful picture of Jack.

I turned the page.

To say I was shocked would be putting it lightly. I was totally flabbergasted! I turned the page. I turned the next page. It kept going and going. He had written a book and I didn't even know! Jon likes to surprise me that way.

Jon is always working on a project or writing an email, so I thought nothing of the time he was on his computer. I totally didn't see it coming.

Sixty thousand words, all about our precious boy and our journey as a family from the brink of death, to hope and renewed faith. I immediately set myself to read the whole thing. I was amazed. I have known my husband, already a published author, to be quite talented. But I didn't quite grasp it until I read our own memoir. The way he saw things from his unique fatherly perspective was an eye opener to me. There were parts I just cried and cried through. It was healing to read his book and I just KNEW it would help others with similar circumstances... if only we could get it published.

That is the journey we are on now. I believe in this book. It is not cheesy and it doesn't always paint the rosiest picture. It is raw. It describes the good and the bad. The wrestle of a spiritual journey, right along with the struggle of a boy born way, way too early.

It is beautiful.

Yes, of course I am biased. But I have also read plenty of preemie books and the genre is lacking. To share one's story is a vulnerable thing, but we know Jack's life and the advocacy for other micro-preemies will be worth it.

Our big reveal!

2011-11-02T08:31:00.000-06:00

We are so excited to announce a book about Jack’smicro-beginnings called You Don’t KnowJack: A Micro-Preemie Story. Jon has been working on it for the past yearand a half, with a few portions even coming from those well-loved email updateshe wrote while Jack was in the NICU. We’ve had many people suggest putting Jack’sstory into a book, and now we are trying to make that happen!

We have our finished manuscript and we are launching awebsite devoted to the book: www.youdontknowjackbook.com.On this website you can read the first three chapters, get weekly updates on theefforts to get it published, and learn how YOU CAN HELP us get this book intothe hands of the public.

Did we mention how excited we are about this?!

You Don’t Know Jack: AMicro-Preemie Story will not only be a useful resource for new micro-preemieparents and families, it is also a great story of faith, hope and life. I am soproud of Jon and all the work he’s put into this project. It truly is amazing. Pleasevisit the website and make sure you “like” the Life with Jack Facebook page inorder to get notices when we update the book website.

We cherish our slice of the web, all of your support, and wecan’t wait for Jack’s story to reach many, many more people.

Here we go!

Halloween 2011: Part 2

2011-11-01T15:07:00.001-06:00

Halloween day was a lot of fun... eventually. As you can see with these next couple of pictures, Jack didn't so much like being put in his wagon to wheel around our downtown (the businesses hand out candy). It all started when I painted Jack's beard on. He was so mad at me! I mean, I really can't blame him for not wanting itchy paint on his face. But come on! Doesn't he know how cute he is, our little lumberJack?

Crisis averted when daddy picked Jack up and we proceeded along our merry way with our group of friends.

In fact, things got MUCH better. Jack even cracked a few smiles!

Group shot! I can't believe most all the kids are looking toward the camera.

Later, when daddy got home from work, Jack got a bag full of goodies from people in Jon's office.

We took Jack's yucky beard off and put him in his pumpkin pj's.

Jack's new favorite thing is watching daddy cook. The minute he hears a sizzle on the stove top, he hurries into the kitchen. Maybe he will become a chef like his daddy one day.

We actually had quite a few kids trick or treat for our wooded neighborhood. It was a fun night of passing out candy in our cozy house.

Halloween 2011: Part 1

2011-10-31T09:55:00.000-06:00

We have a "Jack" theme each year for Halloween. Here are the previous years:

Super cute, huh?

On our Facebook page I asked for guesses on what Jack would be this year and got the BEST responses (and some great ideas for the future). No one guessed what his costume would be for this year, so here we go:

Introducing our very own...

...

LUMBERJACK!!!!!!

photo by the wonderfully talented and friend, Lisa Kunkel of www.lisakunkel.com

I think it turned out so stinkin' cute!! Our little lumberJack didn't really like his scratchy, painted on beard and the running joke at a Halloween party we attended was that Jack was either a 1) lumberjack or 2) a homeless person wielding an ax.

Either way, he was pretty much adorable in his mini-man costume.

Today we head off to another Halloween festivity, so look for more pics tomorrow. But I wanted to leave you all with more shots of our fun weekend. Jack still doesn't quite "get" dressing up and Halloween, but we still had fun with friends. And can I just say how it still feels weird and kind of nerve wracking to take Jack to parties full of kids? We are so used to having a bubble boy, that allowing him to be in large crowds is still slightly unnerving. Still, we had a great time and Jack is slowly getting used to being around others.

I'm pretty much in love with this family shot.

And Jack just adores his daddy.

Craft of our lumberJack from the party!

Yesterday morning we woke up and Jack watched a favorite of his. Always Elmo.

Then we had to get a pic of our little pumpkin with his fun gift from Grams before we headed off to breakfast.

Kids make everything so fun.

More pictures of Halloween coming tomorrow... and our BIG announcement on Wednesday. Stay tuned!

Flashback Friday - First Glimpse

2011-10-28T13:14:00.000-06:00

Besides being quickly wheeled by after my c-section, this is a picture of the first time I remember going down the OB hall to visit Jack. My first, up close glimpse of him. I was feeling well enough to be out of my room and comfortable enough to go in the wheel chair. A couple things that stick out to me in this picture: 1) how swollen I was from pre-eclampsia fluid retention, and 2) the little blanket on my chest, tucked down into my hospital gown. I was sleeping with that little blanket and then leaving it with Jack so he could at least have my scent with him.

And of course, I notice how tiny Jack was. Wow.

Daddy's Home

2011-10-27T11:29:00.000-06:00

I know it's hard to delve right back into normal blogging when we have our big announcement looming overhead, but I will try :)

We've been enjoying a quiet and laid back morning here in the Bennion household. Daddy is home and Jack couldn't be happier. Mommy and Daisy, too. This morning has been filled with lots of snuggles, cups of tea, and looking at pictures.

Jon was in China for two weeks for work and I picked him up at the airport late last night. He brought with himself some wonderful presents from his adventure for us - a beautiful pearl necklace and earrings for me and the cutest Chinese outfit for Jack (pictures to come).

Since we got in so late last night, Jack was already asleep. This morning, when Jack saw that daddy was home, his face lit up like no other and a huge smile and giggle escaped his mouth. He is so happy.

What a perfect morning.

something big is in the works...

2011-10-26T13:56:00.001-06:00

We often have excitingday-by-day updates and news on Jack's big milestones, but we have something extra excitingto announce on the blog. Not now. Seven days from now. You'll have to checkback on November 2nd to hear the big news.

Stay tuned!

P.S. No, we are not having ababy.

P.P.S. No, we didn't win thelottery.

P.P.P.S. No, we won't tellanyone earlier than November 2nd.

Jack's Pumpkin Adventure

2011-10-25T14:02:00.001-06:00

One of the many perks of having my parents live in our town part-time is that they get to come along on our adventures. We decided we needed to get the perfect pumpkin for our porch, so we made our way to the local church pumpkin patch.

Our town is known for it's gorgeous cathedral that we passed along our walk that day.

Come on, Jack! Let's get a pumpkin!

Photo shoot time!

I had all these visions of great shots I would get... but alas, Jack wasn't into it. This is the only one I got where he was even looking remotely close to me.

It's OK because Grams was there to make the yucky photo shoot all better.

This next pictures cracks me up. Jack didn't quite get what to do...

And to end, our perfect pumpkin. Pretty, huh?

Short and Sweet

2011-10-24T15:51:00.000-06:00

Today's post is going to be short and sweet. We just got back from shopping in a town that is about an hour away and I have a quick break before I head off to my yoga class.

I snapped these pics a week or so ago when it was a beautiful, sunny fall day. Jack was loving the backyard, the leaves, and the fresh air.

Cutie!

Flashback Friday - Quick Hands

2011-10-21T11:06:00.000-06:00

I was always amazed at how quick the nurses and hands would move when they were working on Jack. They were trained to get in and get out at lightning speed. Especially during a diaper change. I swear they would change Jack's diaper in three seconds flat.

Two and a Half

2011-10-20T13:59:00.000-06:00

Hold him a little longer

Rock him a little more

Tell him another story (you've only told him four)

Let him sleep on your shoulder

Rejoice in his happy smile

He is only two and a half for such a little while!

-Author Unknown

1st Corinthians 13 for Moms

2011-10-19T12:25:00.000-06:00

Ifmy child speaks in the tongues of men or of angels, masters sign language atsix months and Spanish and Mandrin Chinese by six years, but does not learn tolove, she is only a resounding gong or a clanging cymbal. If he has the gift ofprophecy and can fathom all mysteries and all knowledge-ABCs at a year, readingby two, writing chapter books in Kindergarten-but does not have love, he isnothing. If I volunteer for every mommy ministry-MOPS, AWANA, Sunday School,and if I give all I possess to the poor (or at least bring loads of groceriesto the foodbank), but do not have love, I gain nothing.

Love is patient, love is kind. It does not envyother mother's lifestyle choices or possessions, it does not boast in the areasof my children’s natural strengths (while covering for their faults), it is notproud of the way my child potty trained before your child. It does not dishonorothers by insisting that my method of parenting is the best, it is notself-seeking-hoping that you’ll notice how smart, talented or well rounded I amraising my child to be. It is not easily angered by perceived slights or misjudgments,it keeps no record of wrongs. Love does not delight in evil but rejoices withthe truth that all of parenting is fueled and driven by God’s grace. It alwaysprotects, always trusts, always hopes, always perseveres.

Love never fails-even where I have fallenpainfully short of God’s best for my children. But where there are competitionsto see whose body bounces back best after childbirth, they will cease; wherethere are verbal fights over the correct methods of discipline, they will bestilled; where there is knowledge about the best way to feed and clothe andnurture a child, it will pass away. For we know in part and we parentincompletely, but when they are fully grown, what we thought we knew aboutraising our children will disappear. When I was a new parent, I thought, spokeand reasoned with immaturity and without grace. As my children grew, I askedGod to give me the wisdom to put these childish ways behind me. For now we seeour children’s future as only a reflection as in a mirror; one day we willbehold their adults selves face to face. Now I know in part; then we shall knowfully, even as I am fully known.

And now these three remain: faith, hope and love.But the greatest of these is love.

By my dear friend, Katie Loveland

Mama Bear

2011-10-18T13:29:00.002-06:00

It seems my "Mama Bear" mentality has been coming out in full force recently. Seriously, don't mess with my son.

On any given day, I've been known to have this very conversation in my mind - "Did I just see what I thought I saw? Did I just hear that? How dare someone critique or scold Jack for a specific quirk he has?! Don't they understand how unique he is? Don't they understand how his prematurity and CP are affecting him? ... wait... should I even bring up that Jack has CP, because we're pretty sure he has it, even though we've never gotten that diagnosis? I've seen the look of pity that people get on their face when I mention it. I see the way that they treat him. How they start to underestimate him. Do I even mention that? How do I navigate the murky waters of defining Jack? Why can't people just let him be?"

And so the conversation goes. I've found myself increasingly frustrated about this, especially as Jack is getting older. His unique track of development is ever more apparent and so are his quirks. It's been getting harder to just let Jack be himself and let no one define him. It's really hard, because that's what humans want to do. We want to attach a label on someone to make them safe.

I do it, all the time.

There are some days where I so desperately want to put Jack in a box and make it easier on everyone to define him. To make it easier on me. If you don't spend much time around Jack, you can have a lot of assumptions about his abilities and it gets old trying to explain his uniqueness.

I'm glad I'm not the only one struggling with this. My friend, Daria, recently wrote about labels.

No matter how much I tell myself that Jack shouldn't be confined by a diagnosis or his prematurity, people continue to want to place a label on him, because truthfully, it makes them feel better. Anything is better than the unknown. No, we don't know what Jack's life will be like and we don't have a crystal ball.... and I know defining it makes us all feel safe because a label often stops the barrage of questions. But still, I don't want Jack treated any different than any other child. I want him to have everything AND more.

... would love to hear from other Mama Bears on this one ...

Some of the sweetest photos ever...

2011-10-17T12:29:00.004-06:00

This weekend, while away in another town, we got to visit Great Grandma W. I made sure to pack my camera, because I just knew I wanted to preserve these memories.

Flashback Friday - Don't Mess With Me

2011-10-14T12:13:00.002-06:00

Jack was getting a bath one night and had the funniest expression on his face, with a fist ready to fly. I'm glad the nurses had a camera out because he was also unplugged.

Cute "don't mess with me" face, Jackpants! We always knew you were a fighter.

Drink?

2011-10-13T14:20:00.000-06:00

Something happened the other day as I was feeding Jack. Something that has never happened before.

He asked for a drink.

He was sitting in his highchair, eating dinner in relative silence. Me and him just together before daddy got home. I had just given him a spoonful of food when I heard "dink?" in a small voice from his little mouth. I froze and thought "did I just hear that?" I looked over at him and he was staring at his little cup of water. I proceeded to offer him a squeeze of water out of that pediatric feeding cup (kind of like squeezing liquid out of a juice cup, through a small straw). He took a few sips and was satisfied. This in itself is a big deal. The fact that Jack will open his mouth up for water is something very new to us.

So I chalked it up to coincidence, but after a few more bites of food, I heard it again, "dink?" And I offered him his cup. He took more drinks.

When Jon got home, I relayed the story and we both realized that this was the first time in which Jack actually asked us for something - and a drink for that matter! He has never verbalized a want so clearly to us.

I can't even imagine what that must have been like for him. To be able to communicate, to ask for something he wants. He has the world at his finger tips and all he needs to do is learn to ask.

300th Post!

2011-10-12T10:40:00.000-06:00

Wow. I've been blogging for three years now. In the beginning, I didn't blog very often or with much substance. That all changed when we had Jack. Jon started to update all of our friends and family on Jack's NICU journey and those updates were put on the blog. The blog grew. Then when we got home, I used this place to deal with the reality of bringing a critically ill baby into our care. I watched Jack grow in strength and health and wrote all about my own emotions, the good and the bad, and how my own journey was mirroring Jack's in a way. Blogging has been a healing hobby for me and has allowed me to get to know many of my favorite micro parents out there. It's been a good thing.

In honor of our 300th post, we thought it would be fun to link to our absolute favorites from Life with Jack, starting from earliest to most recent. Some popular, some barely read, but all very special to us. Sit back, grab a cup of coffee, and enjoy.

Happy 300th post to us!

60 Things

Jack Bennion the Race Horse

Jack: Mini-Jon or Mini-Jessi?

Hit the Road, Jack

A Lesson In Thankfulness

A Reflection of 2009

Jack Unplugged

Happy Birthday, Jackpants!

Mugs

Restless

You Almost Died, Didn't You?

Day 16

What Not to Say

Mr. Jack Goes to Washington... Err, I mean the state capitol.

So It Begins

The Micro-Preemie Roller Coaster

Just Mom and Jackpants

Just When You Thought He Couldn't Get Any Cuter

10 Things I Love About You

Jack Goes to the Farmer's Market

Below the Surface

Fall Photo Shoot

2011-10-11T13:26:00.003-06:00

This little alley is the go-to place for pictures in our town. The leaves are just starting to turn, so I think we'll go back in a week or so to see the leaves in all their glory.

Jack had so much fun walking up this cobbled stone alley.

And the day was made complete when a dog passed by. You can totally tell Jack is yelling out "doggy" in this next one.

Garage Walkin'

2011-10-10T14:01:00.003-06:00

I don't know why we've never thought of this before. I mean, we live out of town and in an area with about 8 months of winter... and I'm talking about snow on the ground for 8 months. Our house is narrow, with not a lot of open space. This creates a problem when Jack needs to practice walking with his gait trainer. Oh and did I mention that we just have dirt roads around us? Gets really muddy. No walking down the sidewalk, because we don't have those either.

We've done mall walking. That works out really good, because no one goes to the mall in our town and there are no crowds to deal with. But it's a 40 minute drive round trip and sometimes it would be nice to stay home.

This weekend, Jon came up with the best idea so far: Garage Walking.

We move the cars out and then Jack can zoom away with his walker at his heart's content. Why didn't we think of this before???

I don't know how much more Jack could look like an old man here.

Using the walker is such good practice. Right after Jack was out walking with daddy, he came inside and proceeded to take many, many steps throughout the night. Jack is up to ten consistent steps. Now he just needs to work on balance and the ever important CONFIDENCE.

Beautiful (almost-walking-independently) Boy!

Flashback Friday - Guardian Angel

2011-10-07T13:57:00.000-06:00

My mom picked this beanie baby up in the hospital gift shop. She said it was Jack's guardian angel and we sat it in the isolette for the four months Jack was in the hospital. I know some NICU's don't allow stuffed animals, but ours did.

Here's where we put it when we finally got home.

And it's still there... watching over our little guy.

Work that left hand, Jack!

2011-10-06T14:01:00.001-06:00

Hi, Jack. We're in occupational therapy today. We are going to work on your left hand. This will be fun!

Motivation (also known as bribery) with Jack's favorite toy. It lights up and plays music! Just what you like, Jackpants.

Here comes the restraint. Hold down that right hand. Make him use his left. Come on, Jack!

You can do it!

And so it goes. We'll keep trying!

Exciting News

2011-10-05T13:50:00.000-06:00

I've been holding off on some exciting news and I just can't hold it in any longer! No, I'm not pregnant. No, Jack isn't walking independently... yet. And no, we didn't win the lottery, although it sure feel like it!

The exciting news is that my parents got an apartment and are now living here in Helena part-time! I can't tell you how much this means to Jon and I. We can now go on dates! I can now schedule some things during the day. Already this week I have done two photoshoots, met friends for coffee, gone out on a date with my man, and got my hair done!

NEW HAIR!!

Not only am I excited about this new found freedom with having babysitters close by (I could seriously have a whole post on why it is so hard to find babysitters that know how to deal with g-tubes), I am just so, so very happy that Jack will be able to grow up knowing my parents, playing with them, snuggling with them, and getting spoiled by them.

Welcome to Helena, Cheeks and Grams!