A Fed Baby is The Best Baby – BUT What Happens When You Can’t Feed Your Child?

Fed is Best.

That’s what we are told now-a-days as mamas.

It doesn’t matter how you feed – bottle or breast – all that matters is your baby is getting fed.

And, I whole-heartily agree.

With each pregnancy, I would daydream and ponder my new little joy.

Would they be stubborn (would my body be stubborn) and make the process of breast feeding intolerable? Or would they latch right away and it become this magical bonding moment?

Well… spoiler alert … none of my babies were easy to breastfeed, and that’s okay.

We tried it, but it became healthier for us to move on.

So, when LB went through the same process, I didn’t think much of it. She was just like her brother and sister. We tried and when it wasn’t working for us, we switched things up and introduced the bottle.

And that worked for a little while – but then, like the flick of a switch, it didn’t.

She stopped eating.

She just stopped.

She never fussed.

She never acted hungry.

She never wanted to eat.

She just stopped.

We tried everything we could. New bottles, new nipples, new formulas – doctor visits, specialists, and eventually a hospital stay.

LB was about 1 month old and would only drink 20 ml in one sitting. (at this point, she should have been drinking about 100 ml per sitting)

We would have to force her to drink 20 ml and then after that she just quit. She would gag, choke, and simply wouldn’t take anymore.

It was so frustrating, and depressing.

My child was, literally, starving right in front of me.

And nothing we were trying worked.

It didn’t hit me how much weight she was losing until I put these two pictures side-by-side documenting her first month of life. I wasn’t expecting this at all.

The first was taken after LB’s birth and the second was taken at only a month old. Her weight loss was drastic. She went from a chunky monkey to skin and bones.

How did I not notice this sooner?!

We had been to the doctor’s by now. We had already been told how serious this was – But, it wasn’t until I saw this picture that it actually hit me.

She was starving. 

And everyone would always tell us, “When she’s hungry she’ll eat!”

At first, I believed them and just thought that she would eventually pick it back up on her own.

But, she never became hungry. We later found out that she just does not have hunger cues, which was strange to me because I thought that was something everyone was born with. How naive I was…

It wasn’t long after this that LB was admitted into the hospital for being labeled as “failure to thrive.”

We went into the hospital thinking that they would run a few tests and help us better understand how to get her to take her bottle.

Boy, were we wrong.

When we were admitted, we were informed that LB would be getting an NG tube (a feeding tube that is placed through her nasal cavity, down her throat, and into her stomach).

Now, it wasn’t like they didn’t tell us before hand that this was a possibility, but it was told to us as just that – a POSSIBILITY. However, when we walked it there we soon learned there was no way around it. Their answer to her problem was the NG tube & it was going to happen whether we liked it or not.

Suddenly, sitting in that hospital room, holding my tiny fragile baby, I was brought back to when I was pregnant.

For a moment, I was sitting alone in LB’s room, hand on belly, getting giddy about what it would all be like. What it would be like to have those bonding moments during breast feeding or how it would feel to watch her siblings lovingly feed her a bottle.

Quickly, that image shattered and I was in the hospital room once again, gazing down on my small helpless baby – and I knew that those dreams where just that: dreams. They would not be our reality.

Our reality would be so much different.

When they asked if we wanted to be present while they inserted the tube, we immediately answered no.

No matter how much they tried to reassure us that it would only take a minute, cause a little discomfort, and be over – I couldn’t stand the idea.

I stood there sick to my stomach.

They quietly whisked her away and moments later I heard her gut-punching cry.

My tiny baby was brought back to me, wrapped tightly in a blanket, with a small tube running out of her nose and a little piece of tape taped to her cheek.

Early on in my pregnancy, we knew that LB would have medical issues. We knew there would be mountains to climb. And, we knew she was “sick.”

But, it wasn’t until that moment – with a tube stuck down her throat for all the world to see – that it all sunk in.

Bringing her home, I was more nervous than I had ever been in my entire life.

Her feeding tube sent my world spiraling.

I had zero medical experience.

Heck, I didn’t even know how to use a thermometer confidentiality! 

And then, all of the sudden, I am in charge of this giant machine that is keeping my daughter alive. I am in charge of making sure the tube is placed correctly. And, heaven forbid, the stupid thing gets pulled out!!! (which it did, quite frequently actually)

I became emotional, depressed, and full of anxiety.

But, worst of all, I wasn’t able to enjoy her early months.

Instead of cherishing those baby days, that would quickly fade away, I lived in constant fear.

Fear that something would go wrong.

Fear that I would do something wrong.

This fear consumed me.

Days quickly passed. Doctor appointments came and went. Nurse visits at home became my saving grace. And, eventually, I was able to come to terms with her NG tube.

I didn’t fear it any more and I slowly started to lose the resentment that I had been harboring towards it all along.

Instead of focusing on all that we couldn’t do because of it – I realized how thankful I actually was for it.

Without this tube my baby would not get fed.

Without this tube my baby wouldn’t be alive!

Eventually, the NG Tube led to a GTube (surgically inserted into her stomach) and we went from using a feeding tube to “fatten” her up for surgery to it being her only source of nutrients.

It has been 10 months since LB first got her NG tube and 4 months since her GTube, and it has just become a normal part of our life.

It’s a pain – Lord, is it a pain.

Constant monitoring. Because, it can still get ripped out – and while I became a master and inserting her NG tube, I am not so fond of the idea of re-inserting her GTube…

Constant bandaging and taping and doctoring up. Because, we just can’t get this dang sucker to heal correctly!

BUT

It is not consuming our life.

We are not letting it dictate how we live or how LB lives.

It is not keeping us confined or hidden from the world.

And, it’s not keeping LB from living her life. I don’t want her to grow up thinking that any of this determines how she can live her life. This situation does not define her and this tube does not restrict her.

It’s just how we feed our baby. It’s not how I imagined feeding my baby…

But, a fed baby is the best baby, right?