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5 things we wish people knew about feeding tubes

Recently the Feeding Tube Awareness Foundation asked people on Facebook, “What do you wish the general population knew about feeding tubes.”  Immediately I had a million things go through my mind, but I held back, waited, and watched what other people had to say.  The number of responses were almost overwhelming, and generally very positive.  I resonated with all of them.  So, I wanted to share, in summary, what “we” wish you all knew about feeding tubes.  I hope that this maybe changes some people’s minds, and that they will in turn, share what they have learned to others:

People with tubes live a good life BECAUSE of the tubes, not in spite of them:

Feeding tubes don’t hold people back.  They give those who need them a much better quality of life.  These miracles of modern medicine give people the ability to live, work, run, jump, swim, laugh, love, etc. These tubes are a sign of life and not reserved for the old, infirm, or dying. Without her tube, Lyra simply wouldn’t be here.  Not that long ago, she simply would not have survived.  Because of her tube she crawls all over the place and gets into everything.  She plays with her cousins, swings at the park, swims with her grandma, and throws balls with her grandpa.  Because of her tube she laughs at her Elmo movies, chases after Daddy, and gives Mama kisses.  Lyra’s tube GIVES her a wonderful life.  It doesn’t hold her back from one.

Tube help people who need them do something their body just isn’t good at:

If you can’t see well, you wear glasses.  If you can’t hear well, you might have a hearing aid.  If you can’t walk/can’t walk well, you use a cane, crutches, walker, or a wheelchair.  Sometimes you need these assistive devices all of the time, sometimes you need them in certain situations.  While there are hundreds of reasons why a person needs a feeding tube, it serves the same function as those devices listed above.  It helps a person’s GI tract do something that it is not naturally good at.  So please, don’t stare or make rude remarks.  I don’t tell you that you should only feed your child at home, so please don’t ask me to feed my child that way.  Please don’t tell me to feed her in a bathroom or out of the general public eye.  A tube is not gross and it is nothing to be ashamed of.

This is NOT the “easy” way and I am NOT a lazy parent:

While I am so grateful for Lyra’s tube, please understand that this is NOT the easy way out.  It would have been much easier to breast/bottle feed.  I’d be happy to throw some goldfish at her, or to have her eat something I made.  It would be great to not have to have a 20 page manual on how to feed her, or an extensive spreadsheet tracking every calorie I put into her body.  I’d love to not have to manage the delivery, storage, cleaning, and tracking of medical supplies.  It would be AMAZING to get out of the house for a day/weekend/small vacation without feeling like we have to pack up half of the house.

I am also not a lazy parent.  When she was an infant I didn’t simply hook her up to her feed, walk away, and go about my day.  Just like any parent who bottle/breastfeeds, I held her and rocked her.  For awhile, I spent at least 1/3 of my day (probably closer to 1/2) holding her and rocking her. Trust me, there was plenty of bonding time.  Also, if anyone thinks that preparing tube feeds is easier than making your toddler a meal is welcome to join me for my morning chaos that starts at 6am.  Seriously, I am happy to have an extra set of hands! However, coffee will not be served before 7am because you have to wait until I have time to turn on the pot.  Too early?  No problem.  Come join me for the afternoon feeding chaos that starts around 2:30pm.  Again, I am happy to have another set of hands.  Also, do you need a spreadsheet to accurately track how many calories your child is getting? No?  Well, if you do, I have become very good at creating them.

We don’t know when the tube is coming out, and that is okay:

The hardest, and most frequently asked question I get is, “when can you take the tube out?”  The question comes in many forms, by well intentioned and kind people.  It’s still the question I hate answering the most, and I am definitely not alone.  The simple answer is: We don’t know.  We don’t know if Lyra will ever eat or drink enough by mouth.  We don’t know if she will be able to take all of her medication orally either.  We don’t know if her stomach will ever do a better job of emptying.  We just don’t know.  People have tubes because they need them, not for fun or because they are just picky.  There is no easy answer for when a tube will be removed because there is no solution for the reasons why people have tubes.  Force feeding or waiting until they get hungry enough, are not viable options. Most of the time when I get this question I just smile and shrug.  It hurts when I see people look sad at my response.  It’s okay if Lyra always needs this tube.  It really is.  The alternative is unbearable.

We are so grateful for feeding tubes:

This goes back to my first point, and comments I have made along the way.  Everyone I know who has a child with a feeding tube, or who has one themselves, has quite a story about how they got one.  No one has ever said, “oh, during our birthing class when they were talking about bottle and breast feeding, we just decided it would be much easier to put in a tube.”  Most of us have watched our children almost die at least once.  We have all spent countless hours in hospital rooms, doctor’s offices, and testing facilities. These tubes keep people alive, healthy, and here.  Every. Single. Day.  I thank my lucky stars that doctors, researchers, and engineers took the time to create these things.  I am so blessed that Lyra was born at a time when they are available.  I am just so grateful to have her here.

So, there you go.  There are the five general things I (and many others) wish the general public knew about feeding tubes. I hope this helps, and I really hope people pass this along to their own networks.  Below are some additional resources that I have found helpful.

 

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How I have changed

The past year has been one of reflection for me.  I often think about where we were a year ago, two years ago, three years ago, etc. A year ago we were celebrating a holiday season without hospitalizations. Two years ago we had just gotten out of the hospital and we were scheduling a whole batch of procedures (which landed us in the hospital for a few days). Three years ago we had the first inklings that something might be up with the baby I was carrying, and I was getting ready to undergo a whole battery of tests (after which they told me everything was fine).

While reflecting on the journey our family has been on is useful and healing, it’s not the whole picture for me.  I have also been reflecting on how I have changed as a person.  I often think about how parenthood has changed me, and how being a parent to a special needs child has truly altered my perspectives on many things.

I am less judgemental of other parents

Before becoming a parent, my list of “I would never do that” was LONG.  I had strong views on how to feed kids, how to handle sleep, and how to deal with other behavioural issues.  Yes, yes, chuckle now. I find it funny too.  At times, when I have been frustrated beyond reason with Lyra, I have thought, “karma’s a bitch.” I have spent unreasonable amounts of money on food because she seemed to like to one time, only to have her never eat it again.  While I was (still kind of am) a believer in the “cry it out” method for sleep training… I still rock Lyra to sleep.  I am much more willing to recognize that sometimes you have to meet your child where they are.  Sometimes sticking to a certain method will do more hard than good for a certain child.

Luckily we haven’t had too many challenges when it comes to behaviour, but I have met so many parents where that is their primary obstacle.  These are good, well meaning, hard working, loving, tough, parents.  They do everything they can to prevent meltdowns, temper tantrums, screaming fits, and other outbursts in public. They have worked with professionals and they are doing their best.  Sometimes the parents might not be at their best in that exact moment, but no one is perfect every minute of the day.  Before Lyra, I would have judged the parents when a child is acting out.  Now, I see the fear (of judgement), exasperation, frustration, and sadness in their eyes.  I feel compassion for them now.  Sometimes, you have to go to the grocery store, and you have to bring your child. They can’t live in a bubble.  Everyone has to leave the house.  I just want to give them a hug.

I’m tougher

Before having Lyra I was a bit of a pushover and often called a drama queen.  On day 10 of Lyra’s life, I learned how to push back.  Watching your newborn turn blue because no one would listen to you will do that. I learned the difference between being a drama queen and being an advocate.  I also learned that, when my life was truly in crisis, I was able to calmly and rationally make very tough decisions very quickly. Sure, I fell apart from time to time.  All of my close friends and family members have received tearful phone calls at some point.  But, when it mattered, I was calm.  I knew that freaking out and melting down wouldn’t help anyone, especially my daughter.

I am less tolerant

Now, I am not sure this is a positive quality, but it’s an honest assessment.  I often say that, since having Lyra, I need people either step up, or step out.  I’m okay with whatever people have decided, but I don’t have time to deal with their struggles with my child being special needs. While I have always had little patience with incompetence, I now have zero patience for it. If you can’t do your job, or if you can’t help me, I need to move on to someone who can.  I also don’t have time for friendships that take a lot of work.  I happy make time for those who make time for me.  Even if it is just a simple text.  However, if you don’t have time.  That’s fine.  I feel little loss for the people who have drifted away since having my daughter.  For those who have embraced us and our journey, your presence in our lives has made it so much richer and we are so grateful.

I also don’t have time for people who don’t try to understand Lyra and the journey that we are on.  Anyone who reads this blog, or knows me, understands that I try to educate and explain things all of the time.  I am open to questions and I happily answer them.  However, when people don’t take the time to listen to my explanations, or simply refuse to except that Lyra will never be an average kid…. ain’t nobody got time for that.  If you can’t enjoy her for who she is, if you can’t get over the fact that she is mentally and physically disabled, if you can’t except that no leap of science will ever “fix” her… I don’t have time or energy for you.  I just don’t.

I have learned where to look for joy

My whole life I felt a little unsettled.  I was always looking for a time or place where I felt, “this is perfect and I am truly happy.”  I didn’t always know where to look for joy in my life.  This is probably part of the reason why I moved so frequently.  I always thought somewhere else might be better.  However, I have learned that joy is a little spark that flares brightly, like a firefly.  That little moment stands out the most and, if you focus on it, it will be the thing you carry with you the longest.  But, if you aren’t looking for it, you’ll miss it.  It will fly right past you.  Lyra’s first year was really tough, but if you ask me what I remember most about that year, the negative things aren’t what I will state first.  The little moments of joy and laughter are what always stand out to me.  It’s Lyra trying to nurse on Mark’s nose, her snuggled up with her grandma, or the look on her aunt’s face the first time she visited.  It’s laughing with family over a beer they snuck into the hospital room, or watching Lyra run around the halls of the 8th floor in her new walker.  Even though life was harder than it has ever been, I remember so many little moments of joy.  While this life is far from the one I envisioned as a parent, it’s a good life.

I am learning to embrace who I am physically

I have never been all that comfortable in my own skin.  I always wanted to be thinner, taller, prettier…. mostly thinner.  I have spent DECADES basically hating myself when I looked in the mirror, or looking at pictures of myself.  Since having my second shoulder reconstruction at age 23, I have honestly been in a bit of a downward spiral.  That spiral turned into a bit of a free fall when I blew out my ACL, had surgery, got pregnant half way through rehabing it, wasn’t able to work out much during pregnancy, and then basically spent a year eating hopital and fast food.  Between sleep deprivation, doctor’s appointments, therapy appointments, and just managing Lyra’s care; consistency in working out has been a struggle.

Finally, I got to the point about 6 months ago where I just decided that I didn’t have the energy to hate myself anymore.  I am very overweight.  I basically weigh as much now as I did the day before I gave birth.  I don’t like it, but I accept it.  I also don’t think less of myself as a person by the size of pants I put on every morning.  Believe it or not, it’s much easier to motivate yourself to workout when you treat the workout as a reward (free time to myself!) vs. a punishment for eating something “bad”.  It’s also easier to eat healthier when you pick something because it makes your body feel food, but you also don’t give yourself a guilt trip for having the occasional indulgence.

Am I perfect at this?  HELL NO.  Like I said, I am trying to undo DECADES of negative thinking about myself.  There are still very few recent pictures of me that I allow on social media. But this shift in how I view/value myself is import for me, my daughter, and even my nieces.  The last thing that I want is for any of them to look in the mirror, and  make a value judgement about their worth as a person based on their reflection.  I don’t want Lyra to ever be ashamed of her feeding tube button or her surgery scars.  Those things saved her life and made her strong.  They are not “something wrong”, they gave her an opportunity.

I knew becoming a parent would change me.  I had no idea how dramatic that change would be.  Have all of the changes been positive?  Maybe not.  But I feel that the positive changes far outweigh the negative ones.  Parenthood is a long road and an epic journey for all of us, and I don’t think it ever goes to plan. But it’s worth it.

Me, in bed, as soon as I finished writing this point.

My husband’s accomplishment

I’ve had horrible writer’s block recently. Although I have had many of ideas of what to write about, I never seem to be able to express myself.  So tonight, I am going to write about my husband. While I don’t often write about him (I try to respect his privacy since this is my project), an event happened almost 2 weeks ago that I feel merits acknowledgement: My husband finally received his black belt in Brazilian Jiu Jitsu.

Why is this a big enough deal that I am writing about it? Well, it has been about 13 years and many schools in the making.  Life has thrown a lot at my husband, and he stuck to a major goal.  He has trained in five states (we have moved a lot), and many schools, all while having other obligations.  Despite having a full schedule, he has stayed with BJJ, unwilling to give up his goals.  He stuck to training while working full time, actively participating in the care his daughter’s medical needs, being a normal dad his daughter, and being my partner.  While I have given you all a run down of my “typical day” in the past, let me give you a run down of his typical Tuesday (he trains Tuesday, Friday, and Saturday):

  • 6 am: WAKE UP!
    • Mark gets Lyra’s feeding bag and pump from her room and brings it down to the kitchen for me.
    • He then goes back upstairs to wake up Lyra, change her, and bring her down for her water feed.
    • He sets her up in her chair, turns on Sesame Street, and administers her medication.
    • THEN he gets ready for work.
  • 7-8 am: Drives to work
  • 8 am – 5 pm: Does work things
  • 6 pm: Gets home, kisses Lyra goodnight, grabs his gear and leaves by 6:15 pm
  • BJJ
  • 8:30 ish…. sometimes 9 pm: Gets home, showers, makes dinner (we fend for ourselves on Tuesdays), and cleans Lyra’s supplies from that day.  He also does other household chores that I may need help with.

He normally doesn’t get to bed until about 11pm, and it starts over again at 6am the next day.

He is also 100% my partner. While I do almost all of the cooking, he always does the dishes.  He takes care of laundry, maintains the kitchen, and helps with whatever chores need to get done.  He attends to his daughter’s medical needs, and also just does the normal daddy stuff.  She loves her daddy.  He is her favorite person to play with. Just as I have, he has slept in hospital chairs, stood by her bedside, spent sleepless nights in emergency rooms, and sleepless nights cleaning up vomit at home.

While managing all of this, and a full time job, he never let go of his goal.

So yes, I am proud enough to write about it.  Yes, I do think it is import enough to be here.  And, yes, I do think there is a lesson to be learned from it.  Good job Mark, we are so proud of you.

Something wrong, or an opportunity?

Recently I spoke to my niece’s classmates at Watershed School about Lyra, and what it is like raising a medically complex child with special needs.  This group of 14-16 year olds are discussing what it means to be human this semester, and did a small section on genetics and chromosome disorders.  It was a perfect opportunity for me to speak to the students, and I am so grateful the school let me come in with my daughter.  I gave them the rundown on Lyra’s genetic disorders, her long list of medical conditions, and spoke about what life has been the past two and a half years.  I gave them the short version because I wanted to give them enough time to ask me whatever they wanted to.  The second question I was asked rocked me… and still is rocking me.

A student asked: “You said that when you were pregnant, you ‘didn’t know anything was wrong’.  Now that Lyra is here, do you see her as ‘something wrong’ or as an opportunity?”

I know I gave an answer, but I am sure it wasn’t a very good one.  Almost two weeks later I am still processing this question and its’ implications.  I have my knee jerk reaction to it, but is that the whole truth? Is Lyra inherently “something wrong”? Or, is she an opportunity? Here is my second (and more thought out) response to that question:

Is Lyra something that is “wrong”? – No.  Are there things that are wrong with Lyra? – Yes. I do not hold back about the fact that having a medically complex child is really hard.  It is emotionally, mentally, and physically draining. I am her doctor, nurse, physical therapist, occupational therapist, speech therapist, case worker, and mother all at once and all of the time.  Things are wrong with her, there is no denying that.  However, that does NOT mean that she is somehow inherently “wrong”.  As I have stated in other posts, her medical conditions don’t define all of who she is.  Yes, they are part of her, but they are a small part.

Is Lyra and opportunity? – Yes and no.  Let me explain the “no” part first.  Lyra does provide the opportunity for others to learn about genetic disorders, disabilities, and medically complex people.  However, that does not mean that she is simply a “teaching tool” to be placed on display, or a lesson to scare others about what can go wrong.  That being said, Lyra has given us the opportunity to expand our lives and critically evaluate what is truly important.  By “us” I mean everyone who comes in regular contact with her.  Little milestones that would have simply passed us a by without much notice have become major celebrations.  Every day with her is a little more valuable because we are so grateful she is still here.  She seems to touch everyone around her, and helps them look at what is really important.  As my niece said to her mom (my sister) one day, “our lives are better because of Lyra.”  As her parent, my life may not be easier, but it is better.  I believe that I am a more patient, understanding, and empathetic person because of my daughter.  It isn’t just things I have experienced directly with her either.  Because of her I have sought out other special needs families and families with similar medical complications.  Through these other families I have learned so much about kindness, community, family, friendship, grief, loss, strength, and joy.  Lyra has been an opportunity for others to learn about these things as well.

While this is not the life I would have chosen, I wouldn’t change who Lyra is now.

To the young man who asked me the question, I hope this is a better answer.  Also, thank you for asking it.  I often say, “words have power, so choose wisely.”  Your questions reminded me to be careful about how I present my story.  So, let me rephrase:  “When I was pregnant, we didn’t know that the baby (Lyra) had two genetic disorders or other medical complications.”  There, that is much better than me saying, “we didn’t know anything was wrong.”

Good Enough

Before I had Lyra I totally knew there would be days where I would have to say, “it was good enough.”  I knew sometimes I would miss bedtime, my child would eat highly processed food for dinner, or they would simply skip dinner and go straight for the sweet stuff (after all, they would have half my husband’s genes).  I didn’t plan on having many of those days, but I knew they would be inevitable.

Then I had Lyra, and a day that was only “good enough” became terrifying. Straying from the schedule meant missed calories or fluids that her tiny body desperately needed.  Changing her sleep schedule guaranteed a falling apart child and 2-3 hours of rocking her to sleep. Having a day where she kept down most of her food simply wasn’t good enough.  It wasn’t a very big step from tolerating most of her food to landing in the hospital, dangerously dehydrated, with an IV.  There was no such thing as “good enough”.  I felt like there was perfect, or falling apart.  Nothing in the middle.  It felt like one small thing would send us into the next crisis.  I was a ball of nerves and constantly on high alert.  It was exhausting.

In the last year, I have been slowly relearning what it means to have a day that is “good enough.”  Lyra is strong enough, and stable enough, that she can miss out on 2 oz of extra water one day.  She can have a few days where she is short on calories because her GI system needs a break.  She can have a day where she doesn’t poop (2 days is still concerning, but that is beside the point). There is also a little more wiggle room in her feeding schedule.  One of her feeds can be off by 30-40 minutes, and it isn’t going to throw her whole schedule (and GI system) into chaos.  Yes, even being off by 30-40 minutes used to DRASTICALLY change how she tolerated her tube feedings.

Slowly allowing a small amount of fluctuation in our daily lives may not seem like much to outsiders, but it has been liberating for me.  While I still keep a detailed spreadsheet with her daily calorie intake, I no longer agonize over every little missed (or lost) mL for that day.  If her system is starting to show signs of strain (aka projectile vomit more than twice in 24 hours), I feel comfortable switching her to pedialyte and slowly building up her calories over the next 3-4 days.  I am learning to say, “today was good enough,” and move on.  It’s not always easy.  It’s not done without trace of anxiety, but I am able to do it and be comfortable with the decision. Maybe one day I will be a little more like the parent I had pictured myself as.  For know, I it’s good enough.

 

 

Tonight

Tonight I held Lyra a little longer than she needed when I rocked her to sleep.  Yes, I still rock my 2.5 year old to sleep.  Even if I didn’t normally, tonight would have been a night that I needed to.  Tonight I was reminded of what a blessing it is to still have her with me.  Sure, she hasn’t taken a nap in two days and has fallen apart at family dinners, but that seemed to matter a whole lot less tonight.  See, today I found that one of the moms in my Facebook groups is in the process of saying goodbye to her son.  While I have never met her in person, I know some of her story.  Her son is medically complex (like Lyra) and she spent every last penny to move him from Texas to Colorado about a year ago.  She had hoped that some of the resources here might finally stabilize him.  Unfortunately, that hasn’t been the case.  So, she is saying goodbye to a little boy she didn’t have to bring into her life.  She adopted him, and gave him every bit of joy and love that she had in her.

It made me think.

Today I was frustrated with Lyra.  I wanted her to nap.  I wanted a break.  Just 45 minutes to myself. I don’t think that is all that unusual for a parent.  However, Lyra had different plans.  She ended up watching Winnie the Pooh on my bed. I was frustrated for a few hours after that non-nap.  But, when I went to put her down for bed tonight, I reflected on the other mom.  The mom who is facing my biggest fear:

What do you do when there are no more options?

How do you say, “goodbye”?

I felt guilty for being so frustrated with my daughter. She is medically so stable right now, and we still have other options to try if things take a turn. I felt guilty for not enjoying her little smile and laugh as she sat in her bed during her “nap”.  I felt like I just needed to hold her a little longer.  And once I put her down, I did something I never do.  I prayed.  Not to a god, but to the universe in general.  I thanked the universe for giving me so many days with her.  I promised to treasure those more often than I do.  I wished for a peaceful night, with a happy baby in the morning.  But it’s okay if we have a rough night too. Because, I get to have another morning with her.  And for that, I am so grateful.

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The little “normal” moments

For my husband and I, we truly treasure the little “normal” moments we get to have with Lyra.  There are many things we sometimes feel we have missed out on.  We are yet to hear a true first word, see her point at an object, or watch her take her first independent (and controlled) steps.  There are also little bonding moments we feel like we missed out on.  Things like little naps together have never really been part of our lives for a whole host of reasons.  But every now and then, we get a little window into the world of an average parent, and we just treasure those moments.  They stick with us and we think back on them for days/weeks/months.  One of those little moments happened the other night… morning is more accurate.

About 4:30 in the morning Lyra woke up crying.  While it isn’t unusual for her to be up at that hour, the crying was abnormal.  So, I went in to check on her and she was definity having trouble calming down.  So, I disconnected her from her pump (her feed had finished an hour earlier, so it was safe to do so), changed her diaper, disconnected her extension, closed her button, and brought her into bed with us.  And….. she actually fell asleep…. Now, I may have only had a few inches on bed to sleep on, but I was actually given a chance to curl around my baby girl in bed.

For many parents, little bits of co-sleeping like this are common and sometimes annoying.  For us? We can count the number of times Lyra has slept in bed with us in the last 2.5 years, even for a short period of time, on one hand.  There are a myriad of reasons for this:

  • In the hospital it isn’t safe to co-sleep
  • She typically just kicks us and doesn’t sleep
  • She creepily stares at me while I try to sleep
  • She is connected to a machine or a monitor and it’s too easy for us all to get tangled in the chords causing alarms or feeding the bed
  • She vomits…. all the time…. still

But conditions were just right the other night.  She must have had a bad dream (hence the crying) and was still sleepy. She wasn’t connected to a feed, so the chance of her vomiting was much smaller, and we didn’t have to worry about getting tangled in the tubing.  In the end, all three of us fell back asleep for about another hour before we had to get up.

It was sweet, and normal, and wonderful.  It was one of those little moments that I often crave and rarely get. My husband and I greedily hoard those moments in our memories. I know that it is something so normal, but for us the “normal” moments are incredibly rare.