Eat Jack, Eat!

When Jack was in the NICU in Missoula, there was a guest speaker/minister who was visiting our church in Helena. Jack was coming up on some pretty big medical procedures and our church had been so awesome about devoting time during the Sunday morning service to give updates on Jack and to pray for him.

This particular Sunday, the guest speaker decided to take some time during his sermon to pray for Jack. I'm pretty sure the guy wasn't American, but I can't remember where he was from. Anyway, during the prayer he asked the congregation to repeat in agreement the following - "grow Jack, grow!" and "live Jack, live!" We got a picture sent to us on our phone that Sunday of the speaker praying for us, and it really meant a whole lot. At that point, we didn't know if Jack would even live and he desperately needed to grow in size and strength. To hear that someone, who didn't even know us, would take the time to care and pray during his sermon, really stood out to us. The cool thing is that we have heard similar stories of people all over the world praying for Jack (in Africa, Asia, etc).

I have been trying to get a particular prayer request out to the world again by telling friends and family, but I also thought this blog could help. Jack REALLY needs to eat. And eat lots! He is at risk for a permanent feeding tube, but we don't want that! Please pray that Jack's tummy will tell his brain "I'm hungry" and that he will begin to eat and grow like we have never seen! It is scary to watch your child struggle with weight gain and wonder if he is being malnourished. I know many micro-preemies struggle with this very thing, but I still think that people's prayers can work! Please join with us in saying "eat Jack, eat!"

Jack Frost

This winter has been an especially cold one compared to ones in recent memory. Even Al Gore would have to admit that it's been rather frosty. It's probably a good time to have a nice winter where we have to hunker down and stay indoors since we really don't have much of a choice.

If you remember correctly, the Bennions in Clancy are in lock down mode at our compound in the outskirts of Helena waiting out this cold/flu/swine flu pandemic while our baby boy Jack gets his lungs and immune system up to snuff. I make it out of the bubble the most often since I have to go to my job in town, but we rarely venture out beyond our driveway. Other than the occasional doctor's visit, Jack has been largely confined to the house where he has now spent more time at than he did the NICU. In many ways, this last four months has been but a blink of an eye compared to his first four months of life (he's eight months old today).

While some may have been consumed by boredom after spending so much time inside, Jessi and I have appreciated being in our own home and observing Jack's progress. It's been two and a half months since I wrote any kind of update, so it's really hard to know where to start. Here is a short, incomplete recap of many of the highlights:

1. Poundage - In eight months, Jack has put on some pounds. More than 11 more than what he weighed at birth (a little over a pound), for a grand total of something over 12 pounds. We have worked hard to get those added pounds on him, and all those days and nights of force-feeding him formula that smells like skunky feet seems to be finally paying off.

2. Mini-Jon or Mini-Jessi - early on this summer we attempted to determine whether Jack looked more like me or like Jessi. I declared a fairly quick victory in that battle, but I am clearly losing the war over time. As Jack's features have developed over the past few months, I must admit that he has some strong Miller traits. When we compare his appearance to early pictures of Jessi's brother Bryce, they could be twins. I'm doing my best, however, to make sure Jack does not also inherit any loyalties to any Miller sports teams (Cowboys, Yankees, etc...). That would be a tragedy.

3. No More Surgeries - In the first six months of his life, Jack had no less than six surgeries. One Christmas wish of ours was for Jack to go surgery-free for at least a few months, and we were able to do that. His last surgery was just before Halloween to place a second shunt in his head for his hydrocephalus. We have been monitoring his brain with regular ultrasounds and check-ups, and the only changes there are the doctor's modifications of the shunts' pressure to slow down the draining of brain fluid. It's a little complicated, but the short story is that it's being treated successfully and these changes are largely micro managing.

4. Developmental Milestones - Because of his extreme prematurity and brain hemorrhages early on, Jack has a statistical 80% chance of having cerebral palsy. This could be anything from a tightness in some of his limbs to complete physical and mental disability. Signs of CP may not show up until he's a year old on his motor skills, so it's an uncomfortable wait as we hope for the best and get him weekly physical therapies to encourage good development. Right now, he shows great signs in his movements, grabbing, babbling, seeing, hearing, smiling, and strength of muscles. His left hand seems a bit tighter than the right, and he definitely prefers his right hand. So far, though, we are encouraged by these milestones and hope and pray for the best.

5. Oxygen - As you will notice with the pictures, Jack is still on home oxygen through a nasal cannula. We have recently done some tests to see how he does without it, and it appears he's very close to being able to trash the nose tubes and breath the nice, clean air we have out here in Clancy for all his oxygen needs. We're hoping that can happen in the next month or so.

2009 was both the worst and best year of our lives. But as time goes on and Jack gets bigger and healthier, the nightmarish memories of his delivery and NICU stay fade just a little as I'm overcome more with the joy and absolute happiness of being Jack's dad, watching him find his voice, listening to little giggles, and see him learn what life is all about. That's about as good as it gets.

Jon

When You Can't Think of Something to Blog About...

And all that is on your mind is Haiti. Wondering how the Compassion boy (sweetie pie, Nerson) is doing. And you are mad at stupid Pat Robertson. When you need a little joy and laughter... then seriously, and I mean SERIOUSLY! check out this link. Will put a smile on your face immediately.

A Reflection of 2009

As I sit with Jack on my lap, I can't help but look back on 2009 and think about how much our life has changed. Jon and I went on a date New Years Eve and we both agreed that 2009 was both the best and worst year of our lives. Our miracle was born and we went through hell and back with him.

2008 ended with joy and excitement. I found out I was pregnant the week after Christmas. I was going into the New Year with much hope, anxiety and general happiness. I was determined to keep my current job (was mentored by wonderful women in the ministry who guaranteed I could do both - be both a great mom and a run a successful non-profit). There was a whole lot on my plate, professionally speaking, and I was slightly nervous that I might not be able to do it all. I had the best example in my own mother though. She has worked my whole life and taught me that I can do anything I put my mind to. I was determined to stick it out, even under hard circumstances.

January came and I was hit with the worst morning sickness (really all day sickness) imaginable. I thought... how can I work and be so sick? I would wake up in the morning, puke, try to take a shower, barely get myself to work, puke again, get dizzy... day in and day out. I would come home from work and literally curl myself up in the fetal position asking God "why is this happening to me?" Little did I know that how I was feeling was just the beginning of the sickness and heartache I would go through. I was feeling the beginnings of the condition that led me to have Jack so early - severe preeclampsia.

Around this same time, things at work started to get extra dicey. I wasn't being treated the best by a certain few people (oh the joys of working with human beings!), especially given the circumstances of having such a complicated pregnancy.... very ironic. Those who read this blog (my friends and family normally) all know more about the details of my work and all that went into it. But for those who don't, let me just tell you... the stuff that went on in no way reflects the awesome staff and ministry coming out of there. I have absolutely no regrets in starting that ministry and just know in my heart that the time was right for me to leave. Capable hands have taken over and I pray that many women continue to be blessed!

I had to make one of the hardest decisions of my life - to leave the organization that I started from the ground up, and pray that someone would get the vision and take it to the next level. I just couldn't do it anymore, especially being so sick. I gave my notice in February and resigned. I basically spent the next 3 months sick on my couch, wondering what in the world would happen next.

In late April we received the awesome news that we were having a boy! I could not believe the ultrasound... boy parts! I for sure thought we were having a girl. At that point, we could finally start to wrap our minds about being parents to a little boy. My dreams started to take flight...

One week in May, I was particularly sick. I was having horrible back pain and thought I was coming down with the flu. I headed to bed early one night, hoping to get rid of my horrible headache. I awoke in the night with extreme nausea. I thought to myself for the first time... this just doesn't feel right. I went back to bed and woke Jon up. Told him I was not feeling good. Now to him, this probably sounded normal. I had been sick for 4 months by then! I tried to fall back asleep, but something wasn't right. I decided to call the Doctor.

When I got him on the phone, it was almost morning, He said, "how about you come in and we can take a look at you." When I got to the hospital (after stopping multiple times on the way for some roadside puking... I know YUCK! ) we were told to sit in the waiting area. I was getting a little mad at this point thinking "why are they just having us sit here?" Finally, we were told to go up to the 3rd floor and check in. When we got there, I was told to gown up and put a mask on. They thought I had the flu and was contagious. Needless to say, it took them a good solid 6 hours to figure out I was on death's door bed. When my OBGYN came in the room and started crying, I knew it was going to be bad news. No flu, no gall bladder problems, but something much more serious. I would have to be life flighted to Missoula to be with a high-risk Doctor and a top-level NICU.

I hate flying. This goes down as the worst flight in my life. The helicopter (thank God!) was smooth sailing and I don't remember much because of the drugs I was on. I do remember it was quite beautiful out, no wind, and the sun was shining right in my face. The pilot gave me his hat to wear.

Forty minutes later we arrived in Missoula safely. I remember being wheeled off the helicopter ramp and my parents waiting for me. Relief washed over me. I was at an excellent hospital and my parents were there. Jon had to drive and he made it moments after. The Dr. did a quick checkup on me and gave us the devastating news - I needed to have an emergency C-section because of a condition called severe preeclampsia. Basically my blood pressure had skyrocketed and my organs were shutting down. I was in danger of permanent brain damage and death, unless the baby was removed from me.

My Helena OBGYN had told me, through tears, that our baby was not viable. Basically, they had to deliver a baby that could not survive. I am crying here typing this because I still have not worked through all the emotions of what we went through in May. This is hard to type, but I need to.

Our precious little Jack (John Allen Bennion) was born Friday night, May 15th at 1 lb, 2 oz. at 23 weeks, 2 days gestation. I remember hearing his little voice squawk when they took him out of me. It was unreal and precious.

The first few days of being at the hospital are still hazy. I recall certain friends visiting and of course, seeing Jack for the first time. But I was definitely in denial and shock about what was going on. That is probably a good thing. If I would have known the emotional rollercoaster ahead of us, I would not have made it.

I don't want to write about our 4 month long NICU stay in Missoula for this reflection. Jon already did an amazing job of that and it was posted on this blog. Let me just say this though - when you go through something so life-altering, your whole perspective on life changes. I am stronger than ever before. I am also damaged like never before. It is a rough paradigm to wrap my brain around.

In September, on my birthday, we got to take Jack home. This fall was spent learning how to be a mom. And how to survive on zero sleep. Jack has a lot of medical problems that keep us on our toes. We put lots of miles on our car with back and forth trips to Missoula for Dr. visits. Truthfully, I don't remember much from this fall... time flew by. We tried to enjoy each milestone and I definitely cherished being at home with our baby.

I prayed for one thing for the Holidays - that Jack would stay healthy, no surgeries or sickness, and that we could enjoy being in our home to the fullest. We did just that. Christmas 2009 goes down as the best ever. I have no complaints and much thankfulness.

2009 was the best and worst year. The best because our sweetie fought for each breath and survived. He is such a happy, good, easy going baby. I thank God for that! I want to leave the worst of 2009 behind and move on. I know life is never easy, but I desperately want an easier 2010. I know that whatever comes our way, we can survive it.

What will 2010 bring? I am not sure. I have made one resolution for this new year - to heal emotionally from everything I have been through. I want to be a strong mom for Jack. I want to be an awesome wife. I need direction from God about what I should do professionally, because I know there is life beyond mommy hood for me. I have much to offer and much to learn.

Mostly I pray for health and safety for Jack in 2010. There is much, medically speaking, that will happen this next year. I pray for the grace to take what comes and roll with it, always looking to God for direction and hope. I'm believing that 2010 will be the best year yet!

Merry Christmas!

Isaiah 9:6

For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace.

Whenever I see camels I think of 2 things: 1)being bucked off a camel in Israel (seriously the scariest thing EVER... thought I was going to plunge to my death off a steep narrow trail in the Negev desert) and 2) the camels that carried the wise men to visit baby Jesus.

Now, anyone that has kind of studied the Christmas story in Luke 2 will soon realize that the wise men didn't actually visit baby Jesus in a stable immediately after he popped out of Mary (sorry to offend anyone who thinks I am irreverent). My point is that the picture above, of the nasty camels in the desert, being guided by the bright shining star, reminds me about the real-life promise that the baby Jesus brought and continues to bring to us modern day folks. I am not sure there was a literal star in the night sky guiding the wise men and the camels (I have heard very good arguments either way). I do, however, believe that Jesus actually walked on this earth, being born 2ooo plus years ago. I don't much care that December is probably not the actual month of Jesus' birth in Bethlehem. I don't care that each and every little thing I am celebrating over the next few days is not perfectly and historically accurate. And no, I am not sorry that we have out a pagan tree in our living room! That is just not the point for me.

The point for me is Jesus - his life, what he stood for, and what he offers to us. That is what I am celebrating this week. And boy is it sure fun...

I am VERY excited for the next few days. Lets see... Jon will be home, which in itself, is reason to celebrate. Christmas Eve we are going to just relax, read, eat, maybe watch a Christmas movie or two and hang out together. I can't wait! We are also going to try to make homemade marshmallows, which is something I have wanted to do for a long time. Can you just imagine hot chocolate with homemade marshmallows in it? Or a fluffernutter sandwich with the homemade marshmallows? Yum! We have already made chocolate fudge with peanuts, gingerbread cookies, and peanutbutter balls... or as I like to call them "peanutbutter bon bons" because seriously, anything labeled "balls" makes me giggle :) We also might squeeze in some salted caramels... lots of fun in the kitchen this time of year!

My mom and dad will be coming Christmas Day. The plan is to open gifts in the morning and to then have a yummy dinner together (of course cooked by Jon, dessert by me) and then get this - the parents will watch Jack so Jon and I can go on a real date to the movies!!! It has been FOREVER since we have been able to go out together and the thought of this is way exciting! In fact, we haven't gone out together, in Helena, since last Spring. We are WAY overdue for a date. It will be so much fun. Not too excited about our movie selection (really... Avatar?), but it doesn't matter. It will still be fun!

The next day my mom and I plan to hit up the post-Christmas sales. Nothing like shopping with my mom. It is always this: (at least in Helena where the shopping is lame) we grab a coffee and head to Target. Then if we are feeling extra adventurous, we go to Macy's.... then maybe to where? Walmart, Kmart, Shopko? Ugh. The joys of living in Helena. But it is still fun.

I am very excited about this Christmas... our first in our own home. We usually travel to be with family. I think we are ready to start our own traditions in our own home. Jack is too young to remember this, but we are still going to spoil him with gifts. How can we not? He is a gift to us and makes Christmas even more special.

Merry Christmas from the Bennions!

Favorite Hymn

My friend Lindsay is always posting encouraging stuff on Facebook and her sweet blog. The other day she put some lyrics of my favorite hymn on Facebook and I can't seem to get the song out of my mind. I love hymns. So much nostalgia associated with them and there is beautiful doctrine woven throughout. I used to have this particular hymn posted on my bathroom wall, so I would see it every morning. So simple, but I just find myself so drawn to this prayer.

Take My Life by Frances R. Havergal

Take my life and let it be
Consecrated, Lord, to Thee;
Take my hands and let them move
At the impulse of Thy love.

Take my feet and let them be
Swift and beautiful for Thee;
Take my voice and let me sing,
Always, only for my King.

Take my lips and let them be
Filled with messages from Thee;
Take my silver and my gold,
Not a mite would I withhold.

Take my moments and my days,
Let them flow in endless praise;
Take my intellect and use
Every pow’r as Thou shalt choose.

Take my will and make it Thine,
It shall be no longer mine;
Take my heart, it is Thine own,
It shall be Thy royal throne.

Take my love, my Lord, I pour
At Thy feet its treasure store;
Take myself and I will be
Ever, only, all for Thee.

One of those weeks...

It's just been one of those weeks where I feel like I'm in a funk. No other way to explain it. I was just feeling a little off (starting last weekend) and then I think it really started when Jon and I watched a documentary called "Including Samuel". It's about disabilities and advocating inclusion of student's with special needs in the classroom. Samuel has Cerebral Palsy... what Jack is at such high risk for. I cried through the whole documentary because it scares me to death... thinking about Jack being in a wheelchair and everything that goes with the diagnosis of Cerebral Palsy is almost too much to handle sometimes.

It is often hard to describe these feelings in words or when a friend asks me how I am doing... if you have no frame of reference for having a child with huge medical problems, it is just hard to describe. I have become calloused to normal childhood inconveniences too, which is not good! I find myself getting annoyed when I hear other moms complain about something their kid is going through. I think "oh geez... try living in our shoes for a while!" I know in my heart that this is not the right attitude, but it is truly what comes to mind. I think the post traumatic stress of what we went through this summer is still ripe (no matter what brave face we put on), and I have yet to work through all of the issues associated with that. And to top that all off, Jack still has major problems we are dealing with on a daily basis - refusing to eat, being constantly scared of shunt malfunctions, therapy and Dr. appointments, growth, and desperately not wanting him to get sick this flu season. Yuck yuck yuck yuck!

My poor husband has to deal with all this too, and that is no fun for him. He is dealing with his own stuff just like I am, on top of going to work day in and day out. But he seems so much stronger. He has been my rock, when others couldn't possibly understand. I thank God that he is in my life and that we are experiencing this journey together. I couldn't do it without Jon.

Anyway, I guess this can go down as a really depressing blog entry. Whatever. It is what I am feeling and I an only human. And I guess it's just one of those weeks.

(p.s. I'm thinking next week will be much better...)