Dear new parent of a tube fed child,

Welcome to the club we never wanted to be part of.  None of us planned for this, and we all got here different ways. But here we are.  Chances are your road has been long and traumatic.  Chances are you have spent a long time in the hospital surrounded by nurses, doctors, and various other support staff.  Now you are home.  And it’s really scary.  You are terrified that you will do something wrong.  You are terrified you will make a wrong decision.

It’s okay.

You will make mistakes.

More than once.

We all do.

It will be okay.

I have been the parent of a tubie for almost exactly two years now.  The first year was an emotional rollercoaster, and a stressful cycle of moving into and out of the hospital.  The past year has been much calmer.  We have found a bit of a groove and have been able to stay home.  However, that does not mean I have not made mistakes.  Here is a little sample of some of my shining moments:

• I have forgotten to clamp her tube causing her stomach contents to drain on me, the rug, the dog, my husband, etc.  It happens at least once a week and I normally catch it quickly.
• I have “fed the bed”.  Overnight things happen, and you do HAVE to sleep at some point.  I have had the extension disconnect from her button, effectively feeding her pajamas instead of her stomach.  I have a had the bag disconnect from her extension somehow (chances are from her moving in her sleep).  I have also forgotten to remove the cap from the bag before connecting it to the extension, causing the whole thing to disconnect and… feed the bed instead of the child. It happens to the best of us.
• I have forgotten to start the pump. Nothing is worse than waking up to a full bag of food and realizing your child has missed out on (in Lyra’s case) at least half of her daily calories.  Nothing.
• I have set her pump incorrectly and given her too much/too little food.
• I have done something (like look at her wrong) that has caused her to vomit. Everywhere. Again.
• I have pulled out my daughter’s feeding tube by catching the extension/button/bag on her carseat, highchair, my foot, and the covers of my bed.

I could go on, but you get the idea.  The point is, what you are doing is stressful.  You are in charge of performing a medical task multiple times a day, 7 days a week.  Many times you will be doing this on little to no sleep.  Mistakes happen.  It’s okay.  No one expects you to be perfect.  Cut yourself some slack and just try to move forward.  Move on to the next feed, the next hour, the next minute.  Try to think of ways to make the mistake not happen again… or at least for a awhile.  Here are some of the things that help me:

• I write down everything feed related.  I have a spreadsheet of what she had each day, and I write basic rate and dose information on a whiteboard to help me remember what to set the pump at.  It’s not perfect, but it helps.  I simply can’t keep all of the numbers in my head.
• I set alarms.  Especially when I have to add a new medication, I set an alarm on my phone with a note to remind me of why it is going off.  I can’t tell you how many times I have looked at my alarming phone and thought, “what the hell am I supposed to do?”
• I use a video baby monitor at night so I can check if her tube is still connected without having to physically go in her room.  It’s not foolproof, but it helps and I sleep more soundly.
• I talk to other parents of tube fed children on Facebook.  We share stories and laugh/cry at our mistakes.  We let each other know that we are not alone and we give advice.

After I have said all of this, I have to confess that I am also writing this letter to myself after a hard week full of mistakes big and small.  This week I have done something to cause my daughter to puke almost every day.  I have set rates incorrectly.  I have left her extension unclamped and made a mess.  I have cried tears of frustration at my own stupidity.  But I need to cut myself some slack and give myself a break.  My daughter is happy, stable, and gaining weight.  It was a bad morning, afternoon, hour, day, week.  But it’s okay.  She is okay.

You will be okay.

So, to the mom, dad, grandparent, foster parent, aunt, uncle, cousin etc. who suddenly finds themselves taking care of a tube fed person: it’s okay.  Know that there are people there to help you.  Know there are other people who have made mistakes too.  Even those of us who have been doing this for awhile make mistakes. You can do it.

Love,

A tubie mom who has a had an off week