We won't miss you, NG-Tube

Before starting a new NG Tube, we always begin with a pep-talk and small prayer. Lots of kisses, apologies and "I love you so much baby girl, I promise it will be quick"

I have fought with everything that I have to avoid placing a tube in my daughter for feedings. Something about the inability to be able to nourish your own child is painful for a mother to admit. Finally I knew I needed to place my selfish perspectives behind me and recognize that my child needed help, help that I could not provide her on my own - help that I could only provide with the assistance of a damn tube.

A feeding tube has saved Annabelle's life. There's no easy or low-key way to say it. I never knew how malnourished she was until she was placed on a tube. Now on one hand, what we are putting thru her tube isn't quite the safest thing to deliver to her, but she's nourished, she receives all her medications without a fight, she is thoroughly hydrated after vomiting spells. The feeding tube has been an ugly, unwelcomed, blessing in disguise. I am grateful for it. But I also have never been so happy to see the NG Tube go away.



We will not miss you for a second Tubey. You're being replaced with a button, because Annabelle is so freaking awesome, she deserves TWO belly buttons! How cool is that?

• No more tape across her face. 
• No more bloody noses. 
• No more pep talks before tube changes where I fight tears back and Annabelle's pleads "NOOooooo Mommy!! Pleaseeee!"
• No more holding her down to place a new tube.
• No more holding her down to change the tape.
• No more holding her down to check placement (constantly).
• No more catching the tube on something that pulls her little neck/head.
• No more runny noses.
• No more droopy eye from the side of the tube.
• No more constant coughing from irritation.
• No more choking while eating.
• No more prednisone / antibiotics with every single tube change.
• No more ripping skin and tape off her face, nearly daily.
• No more leaking ports that result in

• Bed sheets changed daily, if not more.
• Changing clothes 2-3-4x a day.
• Furniture and carpets being cleaned daily.
• Carseats being uninstalled/installed constantly.
• HOUSE THAT REAKS OF STOMACH BILE / FULL STOMACH CONTENTS!
• No more painful stares from strangers.
• No more judgement from adults in public.
• No more questions from curious and scared children who see the tube.
• No more anxiety every time Annabelle see's me assembling new tube supplies.
• No more stress that the tube has moved and I cannot guarantee it's placement.
• No more wrapping the tube around Annabelle's neck during the night from rolling around.
• No more fights with insurance for additional tubes that they will not supply us when we are out.

Annabelle is amazing. She is a trooper and has adjusted so well to being a Tubey-Baby. She gets so frustrated in her cuteness when her Tubey is leaking or stuck on something, "Ohhhhh!! Tubey stuuuuckkkk!! UGHHHH!" She knows how to check for placement, she can open the tube, pull back on the syringe and gets excited when she see's tummy contents, she flushes her own tube and hooks herself up. She knows how to turn on her feeding pump and she knows what everything is called. In a way it's incredible she knows all these things, in a way it's painfully embarassing that she has to know all these things. But this is her life. This is what we do all day, everyday. She's owning her tube and showing us all a thing or two about her own little confidence as a Tubey. Madelynne also owns the proud sister of a Tubey award. If someone stares too long she pipes up, "That's my sissy, she has a tubey because she has boo-boo's in her tummy ok? It's how she eats!" I am so proud that she can answer these questions. Annabelle cannot speak on behalf of the medical device that is taped across her face, but she also doesn't recognize that she's different. Annabelle no longer see's a tube.. and I'm getting past it too. Everyone said I would, and it's taken 3 months, 85 days, and it's slowing beginning to wear on me. I dressed Annabelle in her Thanksgiving Day outfit, she ran into the bedroom to look in the mirror at the bow on her head and smiled so big, she announced proudly, "Ohhh Beautiful!". Nothing can bring tears to my eyes so fast as hearing my daugther's confidence when she has every reason in the world to doubt it. She's so much more resilient than I am, she's so much stronger than I could ever be. I wish I could be more like Annabelle and Madelynne. I wish I could see the innocence in the world as they do thru their eyes. I wish I could become oblivious to all the harsh, crued, judgement and only see a beautiful girl in the mirror wearing a gorgeous bow and not a tube that no one else has to wear. Children are so very amazing.

Placing a tube has never become natural for me. At this point, I don't think I would ever allow anyone else to place it beside myself, but it's still not something that feels natural. There is nothing comfortable about subjecting such pain to your child. The flood of anxiety and nerves that eat thru my body are just incredible. The guilt that I wear is thick enough to cut with a spoon. I always start by snuggling Annabelle so much that she wants to run away, she always has an idea something bad is going to happen when I refuse to put her down and stop holding her. After the tube is placed though, she wants nothing to do with me, she won't come near me or love on me for hours, sometimes a day or two. She is angry with me and I do not blame her.

I assemble all the supply that I will need, and sometimes with the help of Belle.. she likes to cut her own tape ;) I take inventory over and over to ensure that I have everything before beginning. My goal is to move as fast as earthly possible once I begin. I want it all over just as badly as Annabelle does.

My hands shake so badly until the moment we are ready and I put my game face on.
My stomach stays in knots, and I begin to pray and pray and pray that it's a smooth placement, little pain and little blood, and then I pray even harder to verify placement in her tummy quickly.. that's always the longest part and I hold my breath the entire time. If I cannot confirm the tube is in her stomach, it needs to be pulled and inserted again.. and again until I am certain the tube is in it's correct position. There is a chance it can easily be inserted into her lungs instead of her stomach, if that's the case and I attempt to feed her, I will drown her within seconds by pumping formula directly onto her lungs. Confirming the tube is in her stomach though has never been easy for us. It's never been easy for staff at the hospital either. Annabelle's tummy empty's extremely fast (we have her on a medication that does this) so looking for stomach contents isn't always the easiest.

After the tube is placed, we always high-five one another, bump fists and then she runs off.. not to speak to me for a while. I am left with hands that are shaking, and feel as though they've done the worst thing imaginable. Every single time I have placed another tube, I find myself scrubbing my hands viciously for so long afterwards.. as if the hot water and scrubbing will somehow remove what my hands had just done to my daughter. This is something no parent should ever have to do to their child. This is something no child should ever be held down by a parent to do. But this is our life. This tube is saving Annabelle's life, and for that, we do whatever we need. It could always be worse, I know. But this is one of the worst things our family is forced to do, and it's not easy or welcomed.

Here is a video that I found a few weeks ago. I have absolutely no clue how this video recorded. Madelynne had been playing with my phone on my bed as I got everything ready to place another tube. AK was out of town again and this was the first time I had to start a new tube by myself. The first time I watched this video, my heart sank and my stomach twisted...  Annabelle however is so amazing. She hardly fought and after it was in, she laid back with her hands behind her head so I could finish the rest of the process. What 2-yr old does this? Oh she breaks my heart and melts me at the same time. Madelynne is very involved, she wants both to not see her sissy in pain and also to be there to help in any way she can. Our family is anything but a cookie cutter, that's for sure! :)