Different

We are nearing the end of Heart Month so I wanted to touch base on a couple of topics that we often get asked about.  

First up...what are some examples of daily challenges we encounter because of our daughter's special needs?

Well, to be honest, Bill and I have worked very hard to not think of the things we have to do as challenging, we prefer to think of them as "different".  Parenting a child is terrifying to begin with and adding to that parenting a child with a heart condition is a little extra terrifying.  We had to completely reset our mindsets as to what we expected parenting to be like -- but really, who seriously goes into having children knowing exactly how they will parent?  My bet is, no one!  You never know what challenges you will encounter even for children who are completely healthy.  

Here are some examples of things we have to think of or work our daily plans around...
-reflux: we have literally been stuck in our home for more days/weeks than I really care to admit solely because we couldn't get Margaret to stop throwing up.  I think we both experienced a level of anxiety and paranoia when it came to leaving the house with a child who, at times, seemed like a ticking time-bomb of throw up.  Even if we planned outings in between feeds, it never failed that at some point Margaret would reflux up and we would quickly need to change our plans.  Even sitting in her carseat could trigger a reflux episode and frankly that was something we would avoid at all costs.  We also, admittedly, were pretty embarrassed when Margaret would throw up in public places so things we enjoy doing like going to church on Sundays became far to difficult to manage.  
***Thankfully, since starting our tube-wean, Margaret's reflux has disappeared and we are looking at being able to actually leave the house more often, although that brings us to the next examples of challenges....
-germs: it's no secret that the illnesses this winter have been extra awful.  Unfortunately, for kids like Margaret, they are in the "high risk" category for not only catching the illnesses but having a harder time fighting them off.   This, of course, has us more worried about Margaret catching anything and whether or not it could result in a hospital stay.  This means, we have to weigh our options when considering taking her places.  A couple of weeks ago we took her to the zoo and the mall...the next day?  She was sick, again!  Luckily, we've been able to battle all of her illnesses this year from the comfort of our home - I guess that's one "perk" of knowing the safe parameters for her oxygen levels and being able to check them at home...we have supplemental oxygen at home so if she ever were to drop too low, we would stay home and not have to risk going into the hospital unless absolutely necessary.  Seriously though, you guys, I might have become "that mom" who texts people before getting together just to make sure no one has been sick or around anyone who has been sick because I'm terrified of exposing Margaret unnecessarily! *Thanks to my awesome friends for being so understanding!!!

OT waiting room

-appointments: "Do you think I should call the pediatrician?" -- I think I probably ask Bill this weekly because of one thing or another with Margaret.  At this point, I don't even always leave my call back number when I leave a message on the nurses line as I'm pretty sure most of them have it memorized by now. 😉  We have a lot of appointments that we have to keep track of for Margaret.  We try to schedule cardiology appointments in the afternoon so Bill can come over from work for them but not too late because we don't want to have to drive home in rush hour...pediatrician appointments tend to end up being the most randomly scheduled ones -- this last month we found ourselves there 3 different times for 3 different illnesses.  OT appointments typically are Tuesday afternoons but there are a few random dates that I have to make a bunch of reminders for myself so that I don't accidentally forget about them...I'm slowly learning to use my phone calendar instead of the paper one, but I'm still not sure I like it.  We've had a lot of phone calls with our pediatrician's office over the last few months and this helps keep us from bringin

g Margaret in unless absolutely necessary.  We really have an amazing set of doctors and nurses following our daughter's care because after each appointment, the notes and follow-up information is sent to the rest of the team.  Just recently, Margaret was really sick and we thought she might have the flu (ended up being negative!) but, after a long and grueling unexpected appointment at the pediatricians office, the next day, her cardiologist called us just to check in and see how she was doing after having such a hard day!  Just another reason we love our cardiologist!!!
-traveling: simple things like going to church or more involved trips like a road trip to Duluth or flying somewhere are much more involved because we have to think of things like: where's the nearest hospital? how will we get the refrigerated meds and formula there without them spoiling? how long can Margaret handle sitting in her carseat before throwing up?  do we feel comfortable doing a tube feed while she's in the car or do we need to plan to stop?  will the germs on the plane be too much for her to handle?  should we bring her a mask that we know she won't wear?  Traveling is stressful...but we won't let the stress keep us from doing it!  

note: feeding tube hanging out of pants

-clothing: we need quick and easy access to Margaret's feeding tube.  This means, we have to plan her outfits so that we can do this without having to undress her especially since it's the middle of winter and SO COLD.  We've resorted to leaving the extension (the tube that connects to her and the feeding bag) on her mic-key button so we have easier access but this can be annoying because we run the risk of her getting it caught on something and yanking it out...ouch!  I refuse to cut holes in her clothes to make access to her tube easier.  I'm not sure why, but the idea of doing that just bothers me.  We had some awesome pajamas from Target that had an inverted zipper but they only went up to size 9 months.  A while back a friend dropped off some pajamas that she converted to the inverted zipper and Margaret still fits in them thankfully!  Not sure what we will do once she grows out of those but maybe mama will have to learn how to sew...😛 For real, though, we found a swimsuit for Margaret at Target that has snaps on the bottom just like a onesie!  How convenient and easy will it be for us to access her feeding tube when she wears that suit?!  
-meds: Margaret is not on a ton of meds but the ones she's on are pretty important.  One is a pill that has to be crushed and dissolved in water and 2 others have to be refrigerated.  This isn't super challenging unless we are planning on being away from the house during the day.  We usually will measure out the meds and pop them into our cooler with her formula, but sometimes when we are out for a full day, that cooler gets pretty darn full!  We need to work on better space management with that, but it works!  The hardest part is thinking through the day and remembering which meds to pack and then not accidentally giving them to her at the wrong time.
-feeding schedule: this challenge is becoming easier since starting our tube wean.  A few weeks ago, we were still feeding her every 3 hours minus one chunk of time overnight from 11:30pm-5am when she didn't get fed.  This schedule was exhausting and not typical for a child her age.  Our life literally revolved around this feeding schedule.  On top of it, we had the barfing from the reflux so it was kind of miserable.  We have now transitioned onto a much more typical schedule and it has been amazing!  We do 5 tube feeds each day and they are more flexible.  We are still learning what it means to be flexible, though, since we are used to being on the strict 7 feeds a day routine.  Margaret is starting to experience the sensation of hunger so we are hopeful that she will continue to progress towards oral eating and we can hopefully kick the tube feeds to the curb sometime in our near future.  

So, you see?  Our life with a child who has a CHD isn't any "harder" than any other young family would experience.  Our challenges are definitely different, but we have been lucky not to have to deal with things like skin, food or animal allergies (so far).  We don't have to deal with having crazy work schedules and trying to parent together while never seeing each other.  We have a nice warm home to spread out in and we don't have to worry about sharing our space with anyone except our family.  All families have their own challenges and it just so happens that ours looks a little different than most of our friends and family.  😊 Our normal just happens to include feeding tubes, heart surgery, oxygen levels, medical supply companies, etc.  We've got this 😉

**Look up the essay written in 1987 by Emily Perl Kingsley titled : "Welcome to Holland" -- we'll be the first to agree, although a trip to Italy was planned and sounded amazing, the fact that we landed in Holland is much more amazing than we could have ever imagined.  We wouldn't trade it for the world!