Christmas 2011

This was definitely the most fun Christmas we've had since becoming parents. This was the first year Jack and Charlie (but Jack especially) really understood and appreciated Christmas. Some highlights from this season:

We kicked off the season on the Sunday after Thanksgiving with a visit to the Festival of Lights at The Grotto , these beautiful gardens that they decorate in lights to tell the story of Christmas, complete with a spectacular nativity scene. Both kids really loved it and we learned here that Jack really adores carolers.

We decided to do one Christmasy activity a week this year. After the Grotto, we also visited Zoo Lights (more carolers!), a Christmas light festival at a raceway (a drive through thing), we did one evening of Christmas shopping at the mall, the Polar Express (more on that below), and a repeat visit to the Grotto.

We took a trip on the Polar Express this year. We have never successfully gotten Jack to sit on Santa's lap without a lot of fuss and crying. Well, the Polar Express was the perfect antidote to that. It was an old-fashioned passenger train, they served hot chocolate and, upon arrival at the North Pole, Santa boarded the train. He then sat with each family for a visit. It was a very personal, non-threatening atmosphere. Both Jack and Charlie sat on his lap. Jack asked for a train, a boat, and skis. Silly boy. I don't know where he gets this stuff!

Christmas music stole the show this year. We put on carols in the car every time we went anywhere. Jack and Charlie both have their favorite songs, which they would ask for at various times. Jingle Bells, Away in a Manger ("Jesus Born" as my boys call it), We Wish You a Merry Christmas, Deck the Halls, and Oh Christmas Tree top the list of favorites. I wish I could seal Charlie's little voice singing "Jingle Bells, jingle bells, hey!" in my head forever. When we visited the nativity scene at the Grotto, Jack approached it singing "Away in a Manger." I'm glad they both seem to understand what the meaning of the season is (Charlie regularly yells out "Jesus Birthday!").

When we got married, Jared and I invested in a Lionel electric train with plans to buy a new car or part to the train each year. We got the Polar Express version. Our goal was that by the time our children are grown, we will be able to give them the start to their own Christmas trains. We definitely reaped the benefits of this investment this year. The kids were captivated by the train. Jack became a very adept "conductor" and can operate the train quite well. It is a special thing and reminds me of my grandfather.

Buddy the Elf was a fun addition to this year. The kids had a lot of fun finding him every morning. On Christmas Eve, he wrapped up his stay with us by making snow angels in sugar. Then, that night, Jack gave him a hug and a kiss and tucked him under the tree so Santa could take him back to the North Pole.

When my parents came to visit, my mother made Christmas cookies. The boys had such fun decorating them with her.


Having my parents and aunt visit for Christmas was so special. I think this may have been the first year in many, many years that my family did not congregate at my parents' house (we've missed a few Christmases down there living 1,000 miles away but everyone else is usually there). With all of us flung far and wide now, we got the benefit of having them visit here. We had a wonderful visit.

Tube Feeds Tricks, Tips and Techniques

When we first got a g-tube, I scoured the internet for tube feeding resources. After 1.5 years of tube feeding and surviving granulation tissue, infections, feeding the bed, making countless bags of formula, and other tube-feeding mishaps, I feel like something of an expert in this field (except blenderized diets--this is a tube feeding area I know next to nothing about). I thought, for the benefit of other Googlers out there, I would publish some of the things we have found to work.

Caveat: every tube feeding family does it a little different and has different circumstances. My son is on continuous feeds, which is more the exception than the norm. So, some of these things won't make sense for bolus feeding.

**Calmoseptine Ointment: available over the counter in pharmacies (but usually kept behind the counter), Calmoseptine has been the most effective preventive solution to granulation tissue. We put a thick layer on the stoma and then cover it with gauze or button buddies (see below).
**Dressings: Some people don't use dressing for their stomas. Our boys have too much discharge and we find they stay healthier when we keep them covered. We use a combination of split gauze (aka IV sponges) and Button Buddies or a derivative thereof. There are lots of tube feeding mamas who make little g-tube pads to be used in place of gauze. They can be washed and re-used and are often made in cute patterns. Search Etsy as there are many different options.
**Extension Tubing: This is the tubing that attaches to the button (g-tube) and then is further attached to the feeding bag. What kind you can use depends in part on what kind of g-tube you have. We have always had MIC-Key or MIC-Key equivalent g-tube buttons (AMT Mini One). I prefer the AMT Mini-One MIC-Key Compatible extension tubing versus the actual MIC-Key brand tubing. It has a wider diameter, is more flexible and holds the "christmas tree" tip of the feeding bag in place more securely. We use two kinds: the right-angle single port (purple tip) tubes and the y-port (it has a med port for administering meds) right-angle (clear tips) tubes. In all, I prefer using the single port because my son had a habit of opening the med port on the y-port tubes and then getting yucky formula on everything. However, the single port was a challenge to administer medications through. We recently found that using Luer-Lok syringes makes it easy to administer meds through the single port. The Luer-Lok syringe tip fits perfectly and securely into the extension tubing.
**Syringes: see my discussion of Luer-Lok syringes above. We generally order 10 ml syringes but you can get any size as long as they are Luer-Lok. Additionally, we always have 60 ml bolus syringes we use for venting (only necessary if your child has a Nissen Fundoplication) and water flushes.
**G-Tubes: As I mentioned, we use MIC-Key or MIC-Key equivalent g-tubes. I actually prefer AMT Mini-One g-tubes.
**Pumps: We have only ever used the Zevex Enteralite Infinity Pump. I love this pump. We have used the Kangaroo pump in the hospital and it is much heavier and bulkier. I had a small child who started using the pump at 7 mos old. He learned to sit up, crawl and walk wearing his pump. Because it hasn't impacted his mobility, I am a big fan of the Zevex. We would not have had such success with his mobility if he had used the Kangaroo.
**Backpacks: until recently, we used the Zevex Super Mini backpack for our son to carry his pump in. It is very small and makes it easy to carry, even as a baby, but it does have a bit of a tendency to "turtle" him, which can make him less stable when walking. We recently started using backpacks from Feeding Essentials, which we really like. The Feeding Essentials backpack is slimmer (slightly longer) and much lower profile. It also has a better front strap that we have determined reduces chafing on his neck from the straps. Loading the Feeding Essentials is a bit of a pain but way easier on him to carry.
**Formula Pitcher: I am all about efficiency. For this reason, I make my bags once a day and mix all of the day's formula at once. I use the Dr. Brown's formula pitcher. This is a great pitcher as it has an emulsifying mixer attachment for thoroughly combining formula and has exact measurements on the pitcher in both mls and ounces. This is critical when you have a child who is on a very controlled diet and you are counting every ounce they get. I make my bags in the evening. I take what is left of the bag he was feeding from throughout the day (kept cool with freezer packs in the backpack) and add the amount of formula I need for his overnight feed. I then take the remaining formula I have mixed and make a bag for the next day. I refrigerate that bag and then, in the morning, I just load his backpack up. It saves a lot of time.
**Bella Bands: My son goes to preschool/daycare. They were slightly concerned about other kids pulling on any excess tubing that may be visible between his clothes and the backpack. We solved this problem by buying a Bella Band (available at Target and online--it is a pregnancy band) in size XS. We then just put the Band completely over his clothes and backpack. This hides and makes any tubing completely inaccessible and has the added benefit of stabilizing him a little so that the backpack load isn't quite as back-heavy. It works great. By the way, we've never actually found an issue with kids pulling on his tubes even when they are exposed but this gives a method for peace of mind.
**Tape: We use a couple kinds of tape. We use cloth tape and satin tape (both medical tapes). The cloth tape we use to create a little tag about midway down his extension tubing. We then use the tag to diaper-pin the extension tubing to his clothes. This makes it so that if the tubing gets pulled, it will pull on his clothes and not on his actual g-tube, reducing the risk of the g-tube getting pulled out accidentally and discomfort to him. We use the satin tape to affix gauze over the stoma. We don't tape directly to the skin, we just use a little to secure the open ends of the gauze together. I don't like the irritation that taping to the skin causes.
**Nighttime feeds: Many tube families will find themselves having to do overnight feeds at one time or another. When we first got our tube, we were never given an IV pole, so we didn't even know that was an option for hanging the bag at night. However, our son doesn't frequently stay the entire night in his bed anyway (sigh) and so we found that just extending the tubing and putting the backpack in a corner of his crib worked just fine and was way more portable than the IV pole.

Hope someone comes across this and finds it helpful! These are little things that have made our days run much smoother.

Practicing Forgiveness

Charlie recently graduated from the infant room to the toddler room at his school. He has adapted wonderfully--I think he was more than ready for the challenge. He most enjoys gardening. The toddlers (18 mos-2.5 years) maintain a garden, growing sweet peas, cucumbers and carrots among other treats. Evidently, Charlie is quite the avid gardener, evidenced by the wonderful cucumber he brought home from school last week. I'm just sad he can't taste the fruits of his work.

Today, the school's director told me a story that positively warmed my heart and says everything about my sweet little boy. Another friend from school tried to bite Charlie today. After counseling and a discussion of the merits of not biting your friends, the offending little boy was put in a quiet time to reflect on his behavior. Charlie stood and watched his friend in trouble and then suddenly said to Melissa (the director), "No Lissa, hug!" and went to his friend, pulled him by the hands to standing and embraced him. Then, Charlie removed his pacifier and gave him a kiss.

I love seeing my little boy learning to extend forgiveness so effortlessly. I hope he holds onto this virtue.

As I write this, I just scolded Jack for screeching and asked him to sit quietly next to me for a few moments. Charlie immediately came over to sit next to his brother. :-)

Back to Blogging

I took a couple week break from my blog challenge while traveling for work for two consecutive weeks. I haven't given up and plan to try to resume on Monday but for now we are preparing for a return to the hospital...Charlie is having surgery on Monday. Despite having done this many times before, I confess I am grappling with a lot of anxiety about this particular surgery. I'm praying for an easy recovery, no complications and not too much of a setback as far as his growth is concerned. Since we got his g-j tube about two months ago, he has been gaining weight really well, better than he ever has. He has been happier, he is sleeping through the night (!) and his personality (complete with a little almost-two-year-old sass) is shining through. We've really been enjoying the little boy we've been seeing. I'm just hoping this doesn't set us back too much.

On the Jack front, we have spent most of this week trying to readjust to being back home after a prolonged stay. Charlie and I were in Southern California for the past two weeks while Jared and Jack stayed here. Jack always has a bit of an adjustment period when we come back--clingy, emotional and in need of reassurance.

Blog Challenge Day 9: Future

So, I am impressing myself with my commitment to keeping up this blog challenge.

Anyway, I think this is a little redundant to the "Where I'd Like to be in Ten Years" topic but since I can't come up with something more creative, I'll just go with this one but focus on the longer, longer term.

One of my favorite songs is Alan Jackson's "Remember When." Actually I'm pretty sure it is my favorite. I always think of this song when I think of how I'd like my future to look. Starting in the far future and moving backwards, I hope and pray that Jared and I get to see each other turn gray, retire, and enjoy a whole new season of life that is hopefully full of grandchildren and adventures. I'm hoping I can shed my practical, homebody mantle and enjoy some traveling with my husband. I hope we have made wise choices that afford us the opportunity to enjoy our older years without too many financial worries.

I often pray for my children's future spouses. I like to imagine what they are doing and how they are being shaped and molded to become what I hope is the perfect complement to my kids. To that end, I hope my children find someone to love and share life with. Marriage, for me, has been one of the hardest but most rewarding experiences. I simply can't imagine doing this alone. I know this may sound far-reaching and silly at this point in Charlie's life but every time we've been told of this health challenge or that and more recently, that Charlie's feeding tube is probably a permanent fixture in his life, I worry that it will be stumbling block in his dating life. I know...he's not even two and I have more complicated and pressing matters to worry about but...I'm being honest when I say this has crossed my mind more than once.

I have a wonderful relationship with my parents and my siblings (and in-laws as well!). I hope I can cultivate the same love for family in my children and teach them to rely on each other. I hope I have a deep and meaningful friendship with my kids as they become adults.

I secretly hope I have a "second career"--maybe as a nurse? I love what I do but I also can see myself being fulfilled in a different line of work.

I hope we have a house that people love to come to...that are lives are rich with family and friends and an open door. I really love Portland, more than I expected to, and so I do see us here for the long term but I hope we find that perfect neighborhood. I grew up in a little town that was completely walkable...it was safe, I walked to school, everyone knew each other (that's a little bit of an exaggeration but not much) and it had such personality and charm (and apparently, the second best beach in the country). I really hope we can find a town with a similar feel. Oh--and I would LOVE to have a vacation home, ideally on a lake or at the coast.

Blog Challenge Day 8: Satisified

So, today's topic is a time when you were most satisfied with your life. This is difficult and has required a lot of thought. It's not that I live being dissatisfied exactly but I do struggle with contentment. I am frequently worrying about or anxious about something or I am thinking about what's next to come. I am especially guilty of this when it comes to my children. I have this very acute awareness that my fertile years are fleeting and I just don't feel done. I don't even particularly want another baby right now but I also can't let go of the idea that I am not ready to be done having them either. But, I digress. Satisfaction is the word of the day.

I think the time I felt the most satisfied overall in life was shortly after we brought Jack home from the hospital. I felt so complete and not just in motherhood but in my marriage. I loved having this person between me and Jared who we created, who we were wholly responsible for. My best memories are of the nights when he was an infant. I did not breastfeed but I did pump. I, as a meticulous, perfectionist, worrying Virgo (ha ha), did not want to leave my milk supply to chance so I woke up every three hours and pumped while Jared bottle fed Jack. We got into the habit of DVR'ing mindless sitcoms and Food Network shows such as Unwrapped. We also ate copious amounts of Uncrustables during this time, which may have contributed to my inability to lose the baby weight (ahem). Anyway, those 30 minute interludes are some of my sweetest memories...we were fumbling new parents, in awe over our little baby and, while fraught with all the worries and anxieties that come with new parenthood, in those midnight moments it was just me, Jared and Jack.

Blog Challenge Day 7: Astrological Sign

Disclaimer: I think astrological signs are fun but pretty much nonsense.

My birthday is September 1 and I am Virgo. Based on the following description, I think it describes me pretty well, actually.

Traditional Virgo Traits:
--Modest and shy (I am modest, I am not shy)
--Meticulous and reliable (I think this is accurate)
--Intelligent and analytical (yes, at least to the analytical part!)
--Fussy and a worrier (YES)
--Overcritical and harsh (hate to admit it but yes)
--Perfectionist and conservative (yes and yes)

Blog Challenge Day 6: 30 Interesting Facts

Okay, I'm not sure these are interesting or not but here goes...

1. I am one of 5 children. I love coming from a big family.
2. As much as I love coming from a big family, I don't think I want more than 3 kids.
3. I am a birthing-class drop out. Made it through 1/2 of the first class and decided I would learn what I needed when I was in the situation.
4. I have a terrible sense of direction and get lost frequently. I've even gotten lost in a parking lot once.
5. I have a varsity letter in football from high school.
6. I am not athletic at all and particularly hate running.
7. I used to love in-line skating and still kind of wish I had a pair (is inline skating super dorky now???).
8. I primarily work out of my house. I love this arrangement.
9. I am terrified of birds. Especially the thought of them getting into the house and flapping around.
10. Poor table manners are a major pet peeve of mine.
11. I have a terrible habit of mispronouncing words.
12. I have a septate uterus. It has caused me all kinds of grief.
13. I love food and wish I had an easier time dieting.
14. I love newborns but I actually do not love the newborn phase of parenting.
15. In general, I love being pregnant and, after both kids were born, mourned the end of my pregnancies.
16. I always knew I wanted to be a wife and mother. There was never any question about that and I am so grateful that I was afforded the opportunity to do both. I try not to take it for granted.
17. I am very good at multi-tasking but I am learning that I struggle being "present" when there is so much technology to occupy me. I am working on that.
18. Sewing is a new-found hobby and I really love it.
19. I struggle with loving being a working mommy but also wishing I was able to be a SAHM. I wish there was a better balance. I am regretful I don't get to do all of the playgroups, etc.
20. I am not a morning person AT ALL.
21. I have no sense of style whatsoever. Last year, my older sister had to intervene and force me to buy some more stylish t-shirts. It's that bad, friends.
22. I hate doing hair and makeup but I feel so much better when I take the time to do it.
23. I can't wear white to save my life. Within an hour, I have usually spilled something on myself.
24. I am very much a girly-girl. I still love my American Girl dolls.
25. I am highly opinionated and have learned to not be quite so loudmouthed over the years.
26. I am blind without glasses and my eyes won't tolerate contacts anymore.
27. Since having kids, I have struggled with a somewhat paralyzing fear of heights.
28. I have a secret desire to live in Nashville one day.
29. I feel like I would have liked being a nurse and would consider it as a second career later in my life.
30. I didn't love my wedding dress.

Blog Challenge Day 5: Suicide

The challenge for today is to write about a time when you thought of ending your own life. This one is relatively easy--I haven't and can't honestly conceive of feeling that empty and desperate. I am a pretty anxious person...I am frequently anxious about all kinds of things happening/going wrong and have lots of irrational fears (of heights, of birds...). Probably why risk management is a good career for me. In order to stimie these anxieties, I often play "worst case scenario" in my head. I do this about losing jobs, not being able to pay our mortgage, etc., etc. And so, it confounds me that you hear frequently on the news of people not only committing suicide but also taking their loved ones with them as a result of this economy. I'm not passing judgment...just saying that basically, as long as Jared, me and kids were together...well, I feel like we would figure it out.

Blog Challenge Day 4: Views on Religion

I have to be honest, this one isn't making me jump up and down. Mostly because I have strong beliefs on the subject but I also don't like to engage in debate on this topic either. Or marginalize anyone or make anyone feel bad. Can you see the CATHOLIC guilt creeping in? But, in the interest of this challenge, I will post my beliefs.

I am a proud Catholic and Christian. I love the Church, I love everything it represents in my life and the Church has been a source of comfort and stability to me during so many times in my life. I love Jesus and I am humbled and awed by the sacrifice He made for this world.

I hope that I am an example of faith for my children and through my example, they come to know Jesus, as well. But, I want it to be a choice they make for themselves.

Blog Challenge Day #3: Views on Drugs and Alcohol

Drugs and alcohol...this one is pretty easy for me.

Drugs: Totally 100% against them. In all forms. I'm against the legalization of marijuana and every other drug. It terrifies me to think of losing my children to the grip of drug addictions. I don't have much more to say on the topic.

Alcohol: In moderation. I do enjoy a glass of wine here and there but I generally keep it to the weekends (harder to do when I am at my parents house and being served wine I generally wouldn't purchase for myself). Since having kids, I just haven't had the tolerance for it like I did before. By that I mean, I am nagged by the idea of even one drink impairing my ability to respond as quickly as I might need to in an emergency with my kids. I'm also completely terrified about drunk driving/drunk drivers. I do think alcohol is a slippery, slippery slope for some. That's scary.

Blog Challenge Day 2: Where I'd Like to be in Ten Years

Wow--in ten years I will have a 13 year old and 11 year old! That is hard to imagine!

Career: I am currently a working mommy right now for a lot of reasons (personal satisfaction, finances, wonderful childcare) but one major reason is that I've always felt like I wanted to pay my dues now so I could hopefully pull back when my kids were hitting the middle school years. So, I really hope in 10 years that we are financially in a place where I can afford to work more part time (and by that I mean I want to be able to be home after school and, most ideally, at least a good chunk of the summer). I think the middle school years are so important and so formative and a time when children can really easily slip away from their parents...so I want to make sure I am wholly present for them during that time.

Family: I would really love if our family had grown by one and that we would have three kids. I'm not sure if this is in our future but there is a stubborn little voice in my head on this topic. We'll see...

There are some parts of ten years away that I feel like I can easily imagine but some parts that I can't...and one of those is with the kids. I have a hard time imagining what/where Charlie will be in ten years health-wise. I never knew anyone who couldn't eat or who had a feeding tube when I was growing up so I have a really hard time imagining Charlie as an adolescent still battling these problems and toting around his little backpack. The writing on the wall says that's exactly where we will be...but I can't imagine what it will look like. My greatest hope for him is that he is able to find his identity in all of this and that his medical conditions don't define him socially. I have the same worries for Jack but on a lesser scale.

30 Day Blog Challenge--Your Current Relationship

Alright! I am starting the challenge today!

My current relationship is...married to my husband of 4 years, Jared. We met while working for the same company. We actually met at a technology conference we were both attending. Afterwards, Jared would make random stops at my cubicle. :-) I had a terrible commute to work and someone mentioned he lived in the same general vicinity and knew a better route to work that avoided much of the traffic. I asked him for directions, he suggested we carpool and thus started our friendship. We carpooled together for about 3 months, where we were madly flirting with each other. Finally, we both brought different dates to the company Christmas party but wound up attending an after-party together. We've been together ever since. Jared is the love of my life and I knew very quickly that he was the ONE. We have been through a whole lot in our four short years of marriage...a premature birth and prolonged hospital stay, three job changes on Jared's part, another baby, too many surgeries and medical procedures to count, two major moves (one out of state, one in state but different city)...we've had our ups and downs and it hasn't always been easy but Jared is the only person I would want by my side.

Commenting Challenge and 30-Day Challenge

Alright, so we are two days into my 30-day challenge and I'm failing miserably. In my defense, I have been occupied with visiting sister and nieces, allergies, a quick surgical procedure for Charlie, the Fourth of July, and an upcoming 2 day trip to Wisconsin and then week long visit from sister-in-law and four nieces/nephews. And, throw a few days of work into that equation and I haven't had much time to breathe, let alone write. However, I do love the Blog Comment Challenge that Jenna from Jenna's Journey is hosting, so I am joining in and will resume (start) my 30-day Blog Challenge on the 18th.

We had a wonderful Fourth of July weekend chock-full of the sounds of cousins laughing, running, and playing; new and old friends and family mingling, and feeling the SUN for the first time in months. Oregon summers sure are glorious, when it finally makes its appearance.

I am off to bed as I have a 7:30 am flight to catch tomorrow morning. If you're new here, "we" are Kate (me), husband Jared and our two little boys, Jack and Charlie. More about our story here.

30 Day Blog Challenge

Taking a cue from Monica at The Writer Chic, I am going to attempt a 30-day blog challenge, both in an effort to be more consistent with blogging and see if it is something I can actually stick with. Given my sporadic history...well, we will see. I think it will be a fun way to memorialize what my thoughts were on some topics at this point in my life.

I have a really busy week ahead so I am going to do my best to start on July 5th and go from there.

Here is the list of topics, which I reserve the right to change. :-)

Five Guys and Other Randoms

So, shortly after I wrote the last post, our plans for Jared's graduation got derailed by a trip to the ER followed by a weekend stay in the hospital. Since then, we have a new plan for Charlie that we are hoping will work. Essentially, it has been determined that he has "gastroparesis" or, in layman's terms, his stomach is not moving things out the way it should, which is making him feel full, and causing him to not be able to tolerate the volume of food he needs to thrive (or survive). So, on Monday, we are getting what is called a g-j tube, which will be put in through his existing g-tube but feed him directly into his intestines and skip his stomach altogether. The g-j is a temporary solution as they come out of place frequently and so, if it works, we will get a permanent j-tube placed in about a month. The bummer is it looks like this is going to be a permanent struggle for him. I struggled with this a lot over the past two weeks (it wasn't really my plan for him to have one hole in his stomach, much less two and I certainly never thought it would be permanent) but I am choosing to focus less on that and more on the happy, sweet, funny little boy in front of me. He really is a trooper.

One of the things I miss A LOT about California is In N Out Burger (so much so that I think this isn't my first post on that topic). They apparently have no plans to open stores here in Oregon. Boo. Anyway, I love hamburgers. They are certainly one of my vices and not particularly helpful with weight loss or cholesterol but...so it goes. So, I recently tried Five Guys, for which there is a location close to my house. Five Guys is always busy and I've read they are similar to In N Out. By the way, according to new blog rules, I think I need to state that I am not being compensated by anyone for this review. Anyway, back to the burger. I can see why it has been compared to In n Out--you walk inside and it looks virtually identical! That all ended at the order counter. At Five Guys, you choose what toppings you want. There are no pre-determined packages. By that I mean, you add absolutely everything to the blank burger...nothing comes standard. I wasn't expecting this, so I was a little flustered when I got to the counter and didn't know what to do and there was an impatient line behind me. So, I ordered a cheeseburger with lettuce, tomato, mayo, ketchup. I'm sure I could have been more adventurous than this but like I said, I was a bit out of my element. I ordered fries, which, like In n Out, they make fresh there. They do not have milkshakes. The burger was good, but not like In N Out. Definitely better than a McDonalds burger or other major chain fast food burger, but not earth-shattering as well. As my friend Tara pointed out, it was kind of like a backyard grill burger. The fries were better tasting than In n Out, I think. But very greasy. All in all, it was as decent a substitution for In n Out as I am going to get here in Oregon but my heart is still in California when it comes to the In n Out burger.

Graduation!!!

This will be a very quick post--as we are headed out the door. We are headed to Eugene to go to dinner with Jared's parents to celebrate Jared's graduation from DePaul University. This has been a crazy four year adventure--since starting his program, we got married, made two major moves, made three job changes, had two children and have spent countless hours, days, and weeks in hospitals with the kids. Yet through it all, Jared persevered in his studies and is graduating TOMORROW with his Bachelor's degree...and then on to grad school. I am so stinkin' proud of my husband!

"Am-a-namce"

Jack's premature birth was my first big failing as a mother. Now, I know that it wasn't my fault, nor did I do anything to cause it other than being the unfortunate carrier of a defective uterus. However, regardless of fault, a mother is supposed to be able to care for their child. In the weeks that Jack spent in the NICU, I was acutely aware that he was being cared for in every way by people far more qualified than I. The one thing I could do, though, and do better than anyone else, was feed him. My milk was better than anything a nurse or doctor or formula company could provide for him. So, I pumped. I pumped every 3 hours around the clock. I had a little portable, cordless pump that was discreet enough that I could pump anywhere I went. I pumped until he was 14 months old. He grew on my milk and I took satisfaction in watching him grow from a tiny 4 pound baby into a toddler. I learned that feeding your child is one of the most intimate and meaningful acts of motherhood. It is one of the first things that shaped my relationship with Jack, that defined me and set me apart as his mother, uniquely qualified to do this very important thing. Feeding your child and choosing how and what and when to feed them is such a defining characteristic of motherhood. It is probably what ignites such passion in the breast vs. bottle debate.

With Charlie, it was all different. At first, I didn't even want to breastfeed because my experience of actual breastfeeding Jack was such a nightmare. I intended to pump for him but had very little interest in breastfeeding. At the urging of friends and sisters and nurses, I gave it a try when Charlie was born. And it was a totally different experience. He learned to breastfeed easily and it was a good match for both of us. For 6 weeks, he grew. Then, he started arching and crying and refusing to eat. His breathing got bad and his weight slowed. We found out he was aspirating as he drank so I reluctantly gave up breastfeeding and started pumping. We gave him bottles of breast milk thickened to the consistency of honey. But, he still didn't gain weight, his breathing was still bad. So, we had a surgery and they gave him a feeding tube and took away oral feeds altogether. I stubbornly continued to pump and give him breast milk through his tube. He screamed through his tube feedings. His weight continued to decline. He had blood in his stomach. We tested my breast milk thinking perhaps it was light on calories. It wasn't, it was very rich, in fact. So, we switched him to a special prescription formula and he gained weight for the first time in 3 months. I was relieved for him--I want him to grow but I am aware that it my milk was causing him major pain and difficulty. I struggled with that for a long time, even though I am so, so grateful for the technology that has made it possible for Charlie to eat.

Yesterday, Charlie took his first ambulance ride ("amanamce" in Jack lingo), the result of intermittent choking episodes at daycare. Upon arrival at the ER, he threw up some blood. His stools then tested positive for blood. That means he is bleeding somewhere in his GI tract.

That morning, before school, I decide to eschew medical advice and I had given him a teeny, tiny bit of strawberry (we are talking about the size of a newborn's pinky fingernail) because I just couldn't say "no" one more time to him and turn around and give his brother what he had politely asked for. Not thrown a fit over but politely asked for. That's what kills me. I just wanted him to have a taste. He choked, I turned him upside down, whacked his back, retrieved the offending bit of strawberry and all seemed okay again. Until his school called asking me to come quickly. I was certain I must have missed something and he had a piece of strawberry in his lungs. I cried the whole drive there, completely panicked over what I had done. Turns out it has nothing to do with the strawberry and instead he has a small tear in his esophagus, the result, I guess of not being able to tolerate his feeds, and so it is making him cough and retch. The blood from the tear then pooled in his esophagus, he would cough to clear it and then choke and gag on it. That's my non-medical understanding of the situation.

We had a follow-up visit with our GI doctor today. He needs some additional testing to figure out why he can't tolerate his feeds, which are currently at the most minimum level they can be at for his size. He is continuously being fed at a rate of just over an ounce an hour and he can't even tolerate that. I look at Charlie for who he is, not in terms of numbers on a chart but today, the doctor showed me his growth chart and pointed out that he has gained less than 4 lbs in a whole year. I already feel out of control with him. I don't get to choose what to feed him, when to feed him, how much to feed him and I still feel like I'm not doing a good job at that. My baby isn't growing and I don't know why. I am frustrated and I know I am in good company because so far, no one else can figure it out either, but it makes me feel like a failure as a mother. I should be able to feed my baby.

Charlie has been the biggest challenge of my life. I wouldn't trade the challenge for anything but I am constantly second guessing my decisions and choices when it comes to him and these situations like yesterday just make it that much harder. I guess this is what real parenthood is all about? Why isn't there a "What to Expect" book for this situation?

Now, to end on a lighter note (I'm actually not drowning in self-pity over here, by the way)...I want to remember this...this weekend, we were at Costco. Jack loves Costco hot dogs but always eats the hot dog and the bun separately. He had finished his hot dog and we were telling him it was time to go and he said he wanted to bring his bun. So, we said "Okay, grab your bun and come on." All of the sudden, Charlie grabs his bum. We weren't sure he did what we thought he did so we said it again, "Grab your bun," and again, he grabbed his bum. It was too cute. :-)

Charlie Update--18 mos!

Charlie turned 18 months last week! We have had a momentous month.

First, earlier in the month, we stayed overnight in the hospital for a 24-hour EEG. While we were in the hospital, our SLP (speech language pathologist) visited us and suggested that we do a swallow study to see if Charlie's swallowing function had improved and could possibly begin to take something by mouth. Of course we said yes! I think I was more nervous walking down to that radiology lab than I have been before any of the surgeries. I didn't want to get my hopes up too much. Well...I should preface by saying that we have been working very hard at home on keeping Charlie's skills up. Even though he can't eat by mouth, we give him a spoon, cup, and bowl and teach him how to use them. His school does the same thing. We are very sensitive to the fact that a child who has been non-oral for most of their life has a high chance of developing oral aversions and that the road to eating successfully by mouth can be bumpy, even after they are safe to eat. So...we didn't really know what to expect. Well, our efforts paid off! We sat Charlie in that seat and he knew exactly what to do with the cup and spoon! The good news is that he passed his study on pudding thick consistency purees. He did not pass on any liquids or solids but we were so thrilled to have a starting point! It was a very emotional appointment, with even the radiologist in tears. Charlie was SO excited to eat. So, we went home with permission to start doing a little bit of pudding-thick purees (a couple of ounces a day). We were nervous because we had the added issue of not knowing what kinds of foods he would tolerate since he has been on an elemental diet since he had so many issues with breast milk and he has never had anything other than his formula and breast milk in his entire life. So, we started with peas. All went well for the first week. Charlie loved eating and he would sit at the little toddler table we have and use a spoon. By the end of that week, however, we noticed his breathing was getting froggy and he was starting to cough. By the end of the second week, he was refusing oral foods and his cough was worse. We had another visit with the SLP, his airway wasn't clear and so he was taken back off of anything by mouth. I am bummed about this but I don't want to take any chances with him. His cough and breathing cleared up as soon as he stopped eating orally again. I think he is just not ready. It seems like it always two steps forward, one step back. It's tiring.

On a "step forward" note, though, we had a full developmental assessment done last week. Charlie is at age level or above in EVERY.ASSESSED.AREA. I had suspected this...I feel like his school has done wonders for his development (we've been so lucky with very good providers his whole life) and he has just exploded developmentally lately. He was late to say his first words (16 mos) but once he took off, my goodness, he has just been a chatterbox! This is another area that can be affected by not eating, so we are so relieved! The speech therapist estimated that he is close to 50 words and says that he will soon put two word combinations together. And just following that appointment, I was putting him to bed and told him I loved him and he said "love you." I was a little blown away and, as if he knew I wasn't sure if I heard correctly, he then signed it, repeated it verbally and then giggled when I started loudly cheering for him. I love that little boy.

The area of development I think I am most astonished by is his walking. Because he is on continuous feeds, he carries around a 2.5 lb backpack. He has been hauling this thing since he started crawling (before that, we carried it for him). Well, he is all of 18 lbs and carrying this little backpack around constantly. And it hasn't slowed him down in the least. It just goes to show--where there is a will, there is a way. I am learning every day not to ever think my children can't do something...they remind me all the time of all the things they CAN do.

Just for stats, at 18 mos Charlie is:

18 lbs
29 inches
Wearing a size 3 diaper
Wearing 6-12 mo clothes
Has the tiniest little miniature feet ever
Is still not sleeping through the night, or on his own. :-)

Threads and Stitches

Since getting my new sewing machine, I've moved on from only making Charlie's pajamas tube accessible and have been teaching myself to sew! I've been having so much fun! Although I don't have any little girls, I've found that sewing girl stuff is so much more fun than boy stuff. So, I've been making a lot of little dresses but have recently done a pair of pajama pants for Jack (and I hope to make him several pairs). My biggest passion though is in making tube-accessible clothing. So, I've been working on making little dresses that are tube-accessible. Here is a picture of one of my creations:


And another (this one has two access points--at the tummy under the skirt for easy access to a button and in the skirt to run extension tubing out without pulling up the skirt):



One of the by-products of sewing is this: I am an impatient person. I am generally a hurry-through-it, get-it-done kind of girl. This doesn't always serve me well. Sewing is not something you can hurry through and get good results. So, I am finding that sewing is teaching me a much needed lesson in slowing down, taking time to do things right, and enjoying the process as much as the result.

Spring!

Spring has finally arrived! We may have a lot of rain all of the time in the winter but our summers are spectacular and, when it peeks through, so is Spring. We have three trees in our front yard that, in aggregate, form a large canopy of branches covering the better part of the yard. Since we moved in January, we had no idea what the tree would look like fully dressed. Imagine our surprise when we received this unexpected gift last week:


It turns out the gnarled branches are a cherry blossom tree! I was so excited! I know it is fleeting but I am soaking up every minute of waking up and seeing those beautiful flowers filling my window.

The boys took a later nap today so we took advantage of the late afternoon and played outside. They had such a good time playing in the grass. A hard part of Oregon with small kids is the lack of ability to spend a lot of time outdoors in the winter.

Charlie has had little to no experience in the grass and he just LOVED it.


Jack has been on strike from the camera lately. Today, he was so drunk with the experience of being outside that he let me take his picture. :-)


It was one of those perfect days. Even this evening, when we were making dinner and chaos reigned...Charlie was squealing, Jack was pestering...Jared was disciplining...I had this acute moment of feeling like this is it, this is what I've always wanted, this is exactlywhere I am meant to be.

Tubie Pajamas

Here is what I've been up to today...


Making these...


Here is an "inside" view:


For most, this probably doesn't look all that exciting (and no, I didn't actually sew pajamas...those are courtesy of Carters). For me, this is VERY exciting. Since Charlie got his g-tube, he hasn't been able to wear zippered pj's or one-piece outfits because there is no spot to run his tubing out of. Not a big deal when you can buy snap-front pj's and just avoid one piece things. However, apparently, they don't make a whole lot of snap pj's in sizes larger than 6-9 mos and Charlie is approaching the point where he is outgrowing the 9 mo pj's. This has been vexing me...because of the tube and his age, two piece pajamas aren't ideal. Then I saw someone selling pj's with a plastic grommet (think the round holes in certain draperies) inserted creating a (large) hole to accomodate tubes. I thought that was a great idea except the hole was pretty big and it was inflexible plastic. My in-laws then suggested button holes and reminded me I had a sewing machine that did buttonholes. So, last night, I hauled out the machine. I should add here that I am a (less than) beginner sewer. After struggling to get the thing threaded, I followed every direction to make the buttonholes and...nothing. It just didn't work. I called my mother this morning who helped me troubleshoot as best she could from the phone and then suggested I take my machine into a sewing store. I did and promptly learned that despite my lack of skills, my machine was actually not working. I also learned it was a pretty bad machine and probably not worth the cost to fix it. Then, after explaining what I was trying to accomplish, the woman helping me told me she had a tube-fed granddaughter! So, we set about making buttonholes on all kinds of machines and quickly learned that most machines will not make holes big enough to thread the tubing with the clamp through without considerable struggle. Which landed me in front of a very nice, pretty expensive machine that could make buttonholes of pretty much any size. So...after negotiating the price and the store also taking my machine as a trade in (they wound up only offering me $50 less than the price I paid for it 4 years ago!), I took home the awesome new sewing machine that probably does way more than I will ever need it to. Oh--and I got an embroidery machine in the deal. So...I got home, set it up and in no time at all, had retrofitted all of Jack's old 12-mo pj's into tubie pj's!

I am thinking of selling them to other parents in our situation. I understand now why the grommet worked--because most machines won't make a buttonhole big enough to accomodate the tubing. But, I like how discreet and soft these are.

So, I am pretty excited now and also excited to try out my embroidery machine. Not sure how much monogramming I need but it should be fun!

Sweet Success

We've had recently had some parenting success. Our sticker chart was working, for the most part...with the exception of the area we most hoped to see improvement in; that is, listening on the first try without a tantrum. Our original plan was that, after Jack earned 7 stickers (between any of the categories), he would get a small treat. After earning 14 stickers, he would earn a toy that we had purchased and set on top of the bookshelf so he could be reminded of what he was working toward. Well, after doling out many small treats and the big toy but still earning NO stickers in the listening on the first try category, we decided to revisit our approach. While bribery isn't my favorite parenting technique...well, at this point, we are just trying to make it through the day. And, have a polite child to boot. Day after day of poor reports from school, we decided to pull out the big guns and specifically target this one behavior. The "big guns" being chocolate. Yes, at three, Jack is a certified chocoholic.

So, armed with Easter candy, we told Jack he could earn a chocolate if he listened to his teachers without throwing a fuss or talking back. Every morning, we very specifically talk about how he can earn his chocolate. Well...we have now had 4 days in a row of positive reports from school. Even the director was surprised at how well he was responding to this. When he is starting to get a little out of control, she just reminds him gently that he has a chocolate to earn and he snaps right out of it. Hopefully, this method will also work when he is a teenager. Ha!

Where We've Been, Where We're Going

I want to start my return to blogging by doing a fast-forward replay of the last year, so that future posts are in context.

Since birth, Jack has struggled with severe reflux and these nighttime breathing events, which were generally attributed to the reflux. After medical therapy did not seem to be decreasing the frequency of these events (in which he would often turn blue), we were referred to GI specialists. They did a lot of tests and determined that yes, indeed, Jack has severe reflux. They also discovered he had a hard time drinking liquids and would often aspirate them into his lungs. There was concern about him aspirating reflux, which would make him very sick. They also thought the breathing events may have been caused by that. So, they recommended a surgery called a Nissen Fundoplication, which would make it so food and liquids could go down but not come back up. They also put in a feeding tube at the same time, primarily due to the risk of some side effects from the Nissen. The Nissen is not a small or inconsequential surgery. It was hard watching my toddler go through a painful surgery with a pretty long recovery time. It was equally as difficult finding out that the procedure failed within a week of having it done. So, six weeks later, we returned for round 2. Unfortunately, Nissen #2 also failed, which was baffling to our surgeon.

At the same time, when Charlie hit between 2-3 months old, he started to refuse to eat and his breathing became labored and he always sounded like he was congested, although he did not have a cold. He was a miserable baby. He cried A LOT, he never slept, and feeding was a nightmare. It could take us 3 hours to get a couple of ounces in him. It was a slow, torturous process of starting the bottle, him screaming and arching and choking and gagging and all over again. He also started having these breathing events. So, we went through a lot of tests and learned that he had a lot of the same issues, but a little more severely. So, he had the Nissen surgery and also got a feeding tube around 6 mos old. We were very surprised when, during our hospital stay post-surgery, that they took him off oral feeds altogether. We weren't expecting that and it took me a long time to come to terms with it. I still struggle with it. Charlie has not eaten anything by mouth since he was 6 mos old. He takes his feeds through his tummy and he wears a little backpack that continuously drips formula through his tube. I know that he wants to eat. He is our little vacuum cleaner...always scanning the floor for crumbs. It sucks. I wish I had a nicer term for it but it sucks. I am grateful for the lifesaving technology that keeps him safe but my mommy heart just wants to feed him.

A month after he had his first Nissen surgery, he had another (unrelated) surgery. It was a long summer. He also had a swallow study, which is where they look to see whether a child is aspirating when he eats. There was hope that the Nissen surgery may have helped in this regard. Unfortunately, it showed that it was worse, not better. On the study, it looked like the muscles were weak and just not doing what they were supposed to. Because these issues are highly uncommon and because we know had two kids with them, we were referred to a neurologist and a neuro-development pediatrician. There they did a bunch of tests and finally gave us a name for what was causing all of these problems: Worster Drought Syndrome (WDS). Worster Drought is very rare. It is a type of cerebral palsy. That means that it isn't progressive (meaning it won't continue to get worse) but they will always have weakness in the muscles that control the mouth, the tongue, the jaw, and the throat. Additionally, there are usually some mild gross motor delays associated with the condition, which we've seen in both of our kids (but mild!). The primary issues associated with WDS are speech difficulties, feeding difficulties, and reflux. In our kids, the feeding issues seem to be worse than the speech, although we have worked really hard on Jack's speech. It is the WDS that likely caused the two surgeries to fail for Jack.

In between all of this, we had a couple more surgeries, the bank Jared worked for failed, giving us a period of lots of uncertainty, we moved cities and Jared changed jobs...

When we got our diagnosis, I was pretty devastated. I could only think about the worst case scenarios and what their futures would look like. These things that we thought were temporary problems that could be fixed with a surgery were now permanent problems that could have wider consequences. However, I was blessed with a relatively sunny outlook and could only wallow in self pity for so long. :-) I realized my boys are EXACTLY how God designed them to be. I don't need to fix them. They are perfect how they are and while I, as any parent does, want to make their course easier, I'm also grateful for the opportunity we've been given to become stronger through these experiences. My boys are troopers, let me tell you. They take their challenges in stride and keep trucking along. They have not let these things slow them down (literally!) and they are a constant reminder to me of what what my outlook should be.

I realize this post is mostly filled with medical information and while our last year was filled with a lot of it, we did a lot of good living in there, as well.

So, that's where I've been the past 10 months since my last posts. In terms of where we're going...who knows? I've stopped guessing. This has been a great lesson in humility and learning Who is really in control. ;-)

I'm back...

Wow--it's been a long, long time. I haven't blogged in a long time because, quite honestly, I haven't known what to say. Our lives are so much more complicated, and so much richer, than I ever imagined when we first decided to start a family. I've been reluctant to share a lot of our past year because I don't want to give the impression that our life is only about health complications. But...this is our life and one thing I've learned from the past year is that other people's stories and experiences on similar paths have made mine so much easier. So, I'm going to try to get back in the swing of this.

I'm hoping to use this to chronicle my life as mother and wife, especially the peaks and valleys of our medical misadventures (as I like to put it!). I'm hoping that our stories can offer some hope to anyone in a similar circumstance who find their way here.

Right now, my biggest adventure is in parenting (ahem, disciplining) my three year old. Two went out like a lamb and three came in like a lion. My goodness, I feel like I have a whole new child. Jack has been really testing my patience lately and I have not felt like I have had some of my best parenting moments lately. We are currently trying a behavior sticker chart and trying to focus on rewarding positive behaviors. Our house was getting ugly with so many time outs. So, day three into the sticker chart and here is what it looks like. Yes, as you can seem, Monday was a rough day. Today was great--until bedtime. Any advice for surviving three?