TPN

Two weeks ago, we checked Charlie into the hospital to embark on our newest feeding adventure: TPN (total parenteral nutrition). This was the most difficult decision we have come to for him and one that is still causing me great anxiety. I did not anticipate the level of anxiety I would continue to have even after we learned the ins and outs and came home.

TPN is IV nutrition. Charlie is still receiving feeds through his jejunostomy tube but he is getting fed through an IV at night for supplementation. He wasn't getting enough calories through his j-tube and he when he was sick, it set him so far back that we were never able to make any progress and his nutritional status was suffering because of it (not to mention skin breakdown and pure misery for weeks surrounding any illness). TPN involves a central line. This can be placed in the chest or the arm but both go to the heart, versus a regular IV which is just in a vein. Charlie got a PICC line (in his arm) until we figure out whether this is going to be a long term solution or just a bridge. The primary risks with TPN are liver damage and, more importantly, sepsis and infection. Hence, my intense anxiety and paranoia surrounding this decision. Because the line is a direct connection to his heart, it must stay completely clean and dry. He has a dressing covering the site at all times, which is changed by a nurse once a week. We have to take a lot of precautions (forget living the "natural" life, we are now a household of alcohol swabs, Clorox wipes, and hand sanitizer) to ensure that we prepare his TPN bag in a sterile environment and fashion and minimize contamination when we hook up the IV at night. I've never been so paranoid about sterilization and hand sanitizing as I am now (I was never a mother who cleaned pacifiers after every fall on the floor). He gets labs taken every week and they monitor the formulation of the TPN carefully. This has certainly turned us upside down. One of us has to be here every night to prepare the TPN and hook him up, he can't be left with anyone other than us or a nurse (when TPN is running), fevers take on a whole new dimension, and we have to do all of this at a pretty specific time of night. So...basically, we are going to have to get creative with date nights at home. We are adjusting to our new normal and trying to take his cues instead of falling prey to our own insecurities and fears (one thing I've learned from parenting complex children is that we parents project a lot of our own issues on our kids...kids are a lot more resilient than adults)--Charlie seems completely unbothered by this turn of events.

The good news? In 2 weeks, he has gained nearly 3 pounds! This is a major accomplishment for a guy who hadn't gained anything in 8 months.

Before I was a Parent...

Here is a short list of things I was never going let my kids do. No comment on how many (or all) of these happen in our house now that we actually have kids:

1. Watch TV, except maybe Sesame Street

2. Eat snacks before dinner

3. Co-sleep

4. Eat sugar cereal

5. Stay up past 8 pm

6. Have a DVD player in the car

7. Eat snacks in the car

8. Drink juice

9. Wear character-themed clothing

I used to be a super great parent. Then I had kids.

Balancing Act

There are days when things are running by so smoothly and then bam, it seems it comes from all sides. After a smooth Christmas season, 2012 hit us like a ton of bricks and hasn't really stopped.

So, one of the challenges with Charlie is that whenever he has a virus or illness, his GI system just shuts down. We can't feed him through his j-tube because it just leaks right back out, including bile, which in turn irritates and blisters his skin. He is already really small and we don't have weight that we can lose. So, during sick season, we are often in a get sick, lose weight, get better, catch up phase. We don't make much progress. It can be very frustrating as when he is well, things seem to be okay...and they can turn on a dime and it disrupts everything. The balancing act is trying to keep him hydrated during the time he isn't eating, avoid a hospital stay and get his GI tract moving again. It is a frustrating process with a lot of ups and downs, steps forward, steps back. He got a mild virus on New Years and we struggled with him for the next 2-3 weeks. During that time, we were advised that it might be time to go to a hospital where they have more specialty in this area and that Charlie overall seems to be getting worse, not better, with his GI motility. Unfortunately, that place is more than halfway across the country. We are working on getting him in there and hoping that they have some treatment options that can help improve things for him, especially when he is sick.

This pregnancy has been going so well. No problems whatsoever. In fact, most often, it is the furthest thing from my mind as my hands are full with my two very active little boys! Well, on Sunday, all of that changed. Jared had just returned from San Diego and I was packing to leave to San Diego in the morning. This is a very busy time at work for me. I hadn't felt the baby move since early that morning. I tried to get kick counts that evening and I couldn't get him to move at all. We watched a show, I tried a few different positions and still nothing. I have a home Doppler, so I then got it out for reassurance that he was just sleepy. Usually, that thing has to only come near my belly and I can hear him loud and clear. Not this time. I tried and tried and could not find a heartbeat. Finally, in a panic, I called my dad and he advised me to head to Labor and Delivery to check things out. I've never been so scared as I was driving over there. Unfortunately, Jared had to stay with Charlie and couldn't come with me. I was praying and willing the baby to move the entire drive to the hospital. When I got there, they also had trouble finding him on the monitors. Fortunately, we were able to get a nice, reassuring shot of a beating heart on the ultrasound. I was so relieved. They decided to put him on monitoring for 20 minutes because I had reported the decreased fetal movement. During that monitoring, it showed our little guy is having a little bit of a hard time tolerating his environment. So, I got admitted and preparations began for the possible need to deliver our baby at 28 weeks. Now, we have had a preterm infant before and we have no desire to repeat that experience. That was at 34 weeks, which is a very different landscape than 28 weeks. We also have two children at home now, which we didn't when Jack was born.

We are lucky to be in a hospital with great care and great doctors who are trying to get us to the best outcome possible. We started steroids for the baby's lungs early on Monday morning and magnesium sulphate to help protect the baby's brain against damage if he were to be born early. My parents flew up to be with me and Jared's parents drove up to help care for Jack and Charlie. We are currently in a waiting pattern, monitoring the baby and seeing what he does. I'm stuck here in the hospital for the foreseeable future and Jared and I are trying to figure out this huge, seemingly insurmountable balancing act...two jobs, kids, therapy appointments, doctor appointments, and anything else that can happen in between, such as, say, Charlie getting a virus. Not to mention that, clearly, we aren't headed anywhere across the country for Charlie. To say that I am completely overwhelmed by this new balancing act would be putting it mildly. I feel terrible that we are having to make choices like postponing when we get Charlie care, how to get Jack to and from therapy appointments, whether it will even be feasible for Jared to attend the birth of this baby, etc. Not to mention that I could be here for weeks and weeks and not see my kids much.

So, that is where we are at. I never saw this coming. I have faith and hope we will figure this out. We are blessed with wonderful family, friends and employers. But I am completely overwhelmed by the logistics.

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.

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!

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?

Jack Update

My blog-friend, Emily, is very good about writing posts chronicling things her kids are doing. I'm going to steal her idea because I've been saving up a bunch of things Jack has recently been up to and meaning to record them.

Jack is now 20 months old! I'm not sure how much he weighs right now (somewhere around 24-25 lbs) but he is definitely more and more a toddler and less and less a baby. That makes me sad but we've also been having so much fun with his emerging personality.

--Jack LOVES Elmo. I may have mentioned in previous posts that he will not pay attention to any TV shows but recently, he's become a big fan of Elmo. He points to the TV and says his version of "Elmo." Originally, we were just DVR-ing Sesame Street episodes but he wants us to fast forward through any part not exclusively starring Elmo so we recently went and bought some Elmo's World videos.

--For Halloween, Jack is going to be Elmo. This was not by plan...his parents were a little slow in planning and acquiring a costume this year and went out at the last minute last weekend and basically wound up with Elmo. At least it's appropriate for his current tastes! Pictures to come!

--Talking! He is saying more and more words. He likes to say "night night" and the other day, was trying to give Bailey (the dog) a big hug when she was lying on the ottoman. She wasn't having any of it and moved to another couch. He followed her and laid his head on her and said "night night." One of my other favorites is when he will imitate and say "green beans."

--Lately, Jack has been very into cuddling with his mommy. This is a relatively new development from a kid who has always wanted to go right into his bed at bedtime. I've been enjoying some cuddly moments in the rocker before bed with him.

--He's learning animal sounds. Basically, he only does a dinosaur growl but it is so cute. He puts his hands up near his face like little claws and growls. He will also point to the farm where there are cows on our way to daycare every day and say "moo." However, he says this whether there are cows out there or not so I'm not sure whether he thinks the field says moo or the cow. :-)

--He likes to point to wedding pictures of me and Jared and point out "Mama and Daddy." He also points to pictures of himself and says "baby."

--The other day, Jared stayed home from work so our morning routine was a little different. When I loaded him up for daycare, he started crying and saying "MamaDada" and it was the first time I heard him voice a preference for staying home with us. I think he thought it was a weekend. It warmed my heart that he wanted to be with us but also shot pangs of guilt through me that I wasn't staying home with him!

--If I ask him where the baby is, he will pat my tummy.

--He is OBSESSED with the computer. He knows how to turn on Jared's computer monitor so there is no tricking him into thinking the computer is "off" anymore. He has also learned how to climb onto the barstools in the kitchen, which gives me and Jared a great deal of heartburn. He does, however, look pretty cute sitting at the counter like a big boy.

--We've been working on time-outs lately. Unfortunately, we've spent a good amount of time in time-out during this process. Sometimes he will deliberately do something he knows will land him there and will happily trot off to time out, almost like he wanted to go. Other times, he is less than thrilled to sit there. But, he seems to understand it is a punishment.

I love this little boy and I'm getting to the place in my pregnancy where I am so excited to meet my new little baby but also struggling with being sad about Jack growing up and how I will handle two kids. I can't imagine I could possibly love someone as much as I love Jack!

Contentment

36 weeks pregnant! I NEVER thought we'd make it this far in a pregnancy, so I am absolutely thrilled. It's looking more and more likely that we will have a full-term baby and, even if Baby Charlie was born tomorrow, we would likely get to bring him right home. Now, instead of worrying about a protracted hosptial stay, I'm getting more worried about what it will be like to be vaulted into instant baby-dom. When you have a baby in the hospital, one of the silver linings is that you do get a little time to catch up on your sleep before they send you home with a baby. :-)

I've been DVR-ing old ER episodes. I was actually never a big ER watcher; I liked the show but never watched it consistently enough to keep up on the story lines. A couple months back, I found that a channel was starting the series from the first episode, so I've been recording them. I was watching the episode in which Dr. Greene dies the other night. It starts with him writing a list of all the things he wanted to do in his lifetime and ends with his last days in Hawaii with his wife and two daughters. It got me thinking about what things would go on that list for me. I realized pretty quickly that the things that I have always truly dreamed of doing--I've already achieved. Now, that doesn't mean there aren't things that I would like to do if given the chance but I'm pretty fulfilled. In a nutshell, my whole life, I wanted to be a wife and mother. My marriage and my son pretty much fill me up. Of course, I dream of all the things I would like to see my children do and think of how Jared and I will be when we are grandparents, etc. but the fact that I am a wife and a mother--well, it's enough for me.

As I type this, I'm watching my husband bathe my little boy. And, I'm happy to say, it's all I need.

Little Monkey...

...this is what my parents found this morning after leaving the laundry room door open for a few minutes...




Too funny! Reminds me why we have these on our washer and dryer at home:

Like Father, Like Son

Wow--two posts in two days! A record for me! I don't want to forget this, though...

Now that Jack is getting older, we are seeing more and more of his personality shining through. Mostly, I see Jared. If you know my husband, you know how fastidious he is about nearly everything. He is clean, orderly, irons (yes, even Jack's clothing), and likes things in their place all of the time. It seems that we have bred a child with the same tendencies.

Jack is a cautious, watchful kid. He observes things before jumping in there and we see this in the ways he imitates us. He, is however, also a stickler for things being done properly and in the "right" order. For example, when I pick him up from daycare, if I stop and chat for a minute, he gets incredibly anxious until we open the door and he can see the car waiting. He knows I come, we get in the car and we go. Interrupt that flow and he doesn't like it so much.

Lately, he has been fetching his diapers and immediately following a diaper change, he will promptly bring his diaper to the trashcan, dispose of it, make sure the lid to the can is closed and then come back for his box of wipes, bring it to the bathroom, and gesture for help to put it back into the cabinet where we keep them (it's a high cabinet).

At mealtimes, after we put him in his highchair, he immediately, reaches for his bib and gives it to us to put on him. When he is done, he makes the sign for "all done" and we wipe him down. He takes off his bib and takes the paper towel and cleans his tray and wipes his mouth. It's pretty funny and he does it like clockwork.

He's very good about cleaning up his toys (not to say he doesn't make messes!) but he is pretty good about knowing where things go and putting them there.

His latest involves the potty. Lately, he has been gesturing to sit on the potty. He is nowhere near being ready for potty training (given the fact he can't say any words!) but we indulge it since I figure if he is showing interest, I should try to acclimate him. So, I put him on the potty where he sits for a moment, reaches for a square of toilet paper, does some approximation of wiping, puts it in the toilet, flushes, puts the toilet seat down (I may be one of the few women with a husband who is very good abou this!), and then gestures for me to hold him up to the sink so he can wash his hands. Mind you, this is all from watching. We haven't made any effort to teach him any of this!

He just cracks me up! I never realized how much some of these traits are just a part of who someone is! Of course, I will take a neat and tidy child any day but it does make me wonder what we are in for with #2...

Bad Mommy

Preface to this post: I am blessed by a baby who goes to bed around 6 pm each night and goes easily. No complicated bedtime routine, no fussing. We bring him upstairs, lie him down awake, turn on his seahorse and off to sleep he goes.

I officially feel like the world's worst mommy. Last night, Jack was in a rare state. I picked him up from daycare and he was throwing a fit about not being able to play with a broom. The fit continued when I strapped him into the car. By the time we got home, he was mostly calm but as soon as I got him out, he got mad again because he wanted to play outside and we were headed inside. Fortunately, Jared was home early yesterday so I promptly handed my screaming toddler to my husband. :-) It didn't end there...there were tears through dinner and bath and at this point, we were slightly concerned because he just wasn't acting like him. We took his temp. We gave him teething tablets and some Tylenol. All to no avail. Finally, we decided he needed to go to bed. The first attempt did not work out. He came back downstairs, played nicely for about 3 minutes and then was inconsolable again. After all this, we decided he really, really needed to go to bed and he would just have to cry it out. Cry it out he did--really, it only lasted about 15-20 mins. Later, I went to check on him. He was sleeping peacefully. This morning, I noticed his face and hair were somewhat crusty and felt guilty thinking it must have been mucus from all the crying.

Well, this evening, I went upstairs to get him a towel for bathtime and for some reason, pulled the blanket out of his crib. And realized it was covered in vomit. My poor guy had thrown up last night (likely the cause for all of his fussing last night) and we let him sleep covered and lying in his vomit. I feel so terrible. Next time, I will try to problem solve a little more.

On an unrelated note, my best friend's daughter (and my namesake!), Katy, is having surgery on Thursday to have tubes put in her ears. Although a relatively minor surgery, it's always scary to have your baby put under anesthesia. Please keep them in your prayers, for Jennifer and Robby's peace of mind, that the surgery goes easily and that it is successful in helping keep these chronic ear infections Katy's been having at bay.

Thanks, Hyland!

Jack is cutting 5 teeth right now--and this is, by far, what I would consider one of the more difficult parenting times of the past year. My happy, giggly, low-maintenance, super-sleeper baby has been replaced by a whiny, clingy, awake-every-hour, emotionally unstable nightmare. Even when I am holding him, he is constantly emitting a low-frequency whine, which is worse than fingernails on chalkboard. We can't set him down or walk away (even within his visual field) without him being reduced to a puddle of tears. He can seriously go from happy and engaged in an activity to a complete mess in a matter of seconds lest we even appear to be paying attention to anything but him. We have tried everything--Tylenol, infant Motrin, Orajel, teethers, teething cookies, fingers (ouch--I've been bitten HARD a couple of times!), etc., etc. Yesterday afternoon, on my whit's end, Jack and I took a trip to Albertson's and picked up some Hyland's Teething Tablets. I wasn't convinced these would do anything--they don't have any numbing agents and it isn't entirely clear how they work. But, they do. Within about 15 minutes of taking the tablets, our boy was back again. We got the first several hour stretches of sleep we've had in a while. So, thanks, Hyland's. You've made this mama happy.

It's a Tough Life...

...being a baby... :-)

It's been a big week! Jack turned 4 months old on the 22nd! We had his 4-month appointment today and he is now a whopping 12 lbs 11 ozs and has made it to the 10th percentile for weight (up from the 4th percentile at his last well-baby visit and not even making it on the charts at birth!). Looks like he might catch up within the first year!

Jack started daycare this week, as well. We found a wonderful woman just a few doors down the hill from us--she has been watching kids for 20 years this year at the same location and Jared went to school with one of her sons. It's very clear how much the kids there love her...so we are grateful we've found such a great arrangement. We're adjusting to early mornings and the added drop-off and pick-up part of our day...

Life has been keeping us on our toes lately. The FDIC folks are still in "visiting" me at work and as soon as this contingency leaves (they will have been here for 5 weeks), the next group arrives for another go at me. We'll see if I'm still standing after it's all over. Jared's summer term at school has begun--he's excited to be taking a digital photography class, so stay tuned for some new pictures! Thanks Dad, for loaning him the camera to make it all possible!