Thursday, November 29, 2012

Tube Feeding and our Pursuit to find a food Addie likes...

A few weeks after transplant, I posted a photo on Facebook of Addie eating a Frito with all this excitement that hooray Addie was eating!  At the time, it seemed like huge progress that she was eating a Frito and playing with food.  Now 6 months later, it seems like it might have been a passing phase and I almost wish I hadn't posted the Frito picture because everyone seems to think Addie eats now.  So to clear up any misconception... Addie is 100% tube fed.  She gets all of her daily nutrition and daily hydration from a feeding tube that has been surgically placed into her stomach.  And while I understand that this is less than ideal and that for a parent whose child eats, it probably seems sad. I suppose it is in a way.  But I will also tell you that I am so incredibly thankful for Max and Addie's g tubes.  They are saving their lives, saving their kidneys (well hers now and his soon), and saving a lot of fights and battles that we just do not need to be having right now.

Feeding has been one of the biggest stressful things in our babies lives.  Preemies of course do not eat so we started the tube feeding process as soon as they were born.  They had NG tubes when they were little which are tubes that actually go down their nose and throat into their stomach that way.  NGs are less invasive because they are not surgically placed and they are more temporary so they work really well for little babies who do not pull them out or fight them and who we expect to start eating.  The process of getting Max and Addie to eat on their own and not feed the NGs was long and at times, difficult.  Addie actually did quite well and was eating all on her own a few weeks before her due date which is good for a preemie, especially one who had been quite sick and had some hiccups.  I actually got to nurse Addie for a month or so until the number of meds and supplements needed in her milk just got to the point where pumping and then bottle feeding made more sense for her.   Max took longer to eat on his own- he needed an NG tube until one month after his due date and he ended up having to drink thickened milk.  He choked or aspirated thin milk due to not having a strong well controlled swallow but could handle milk that was more like a honey thickness.  So it was a challenge with both of them but they did learn to eat independently.

Itty Bitty preemies with feeding tubes

From late March- late July both babies drank bottles and got all of their nutrition from eating.  It was still this big source of stress because the NICU follows everything so carefully and we had to add up what they ate and worried all the time about them getting enough.  Neither of them were ever enthusiastic feeders so we seemed to always just barely get them eating enough.  But they did it.  And then we started talking about dialysis and we were warned they would stop eating.  Apparently the dialysis fluid in their belly makes them full and uncomfortable and not having kidneys causes a loss of appetite.  But we were all like 'no not our babies! They will eat!'  I mean they had been eating for months, why would they stop?

But of course they did.  About one month in dialysis.  It started getting more difficult almost immediately and then just progressively got more frustrating for everyone.  We would make the babies face a corner and try for an hour to get them to eat and they would eat maybe 5ml, while crying and fighting.  We really hated to go back to NG tubes, it felt like this backwards step.  But we had to or they would starve. So in late July the NG tubes came back.  And pretty quickly we stopped the force feeding and they got all of their formula through their feeding tubes.  It worked well for making sure they got all the medications and milk that they needed to grow and stay healthy.  But NGs are also difficult for a couple of reasons.  For one thing, they are taped onto the face and I never really got over hating that they made the babies look sick.  And people would stare and little kids would point and I didn't want all of Max and Addie's baby pictures to have tubes making them look sick.  So we took them out a lot.  And also the babies worked out how to pull them out themselves.  So we had to do a lot of putting NG tubes back in.  Almost every day for Addie and probably twice a week for Max. And having to hold down your baby and stick a tube down its nose through its throat is so unpleasant and sad.  And Max particularly hated it and we had several traumatic experiences where he would stop breathing when we placed the tube and not re-start without resuscitation. Putting in their feeding tubes was one of the worst parts of our day.

This thing up my nose is really annoying me!

Then in February we had the opportunity to get more permanent feeding tubes placed in their stomach.  They could not get these while on peritoneal dialysis as the abdominal surgery would disrupt their dialysis but since they were both on Hemo at the time, we had a chance to do it.  And we jumped at the chance.  And it was far from easy.  Max spent four weeks in the hospital on Hemo (he would have been there for some of that for his hernia repair but probably half as long) and Addie had a terrible reaction to anaesthesia and was in the PICU for 4 days on a drip for hypertension.  So getting their g tubes was quite a drama... but also totally worth it!  No more tubes on the face! No more having to put them back in (well, less having to put them back in at least) and no more sticking things down their nose.  They can still recieve their feeds and meds via tube feeding without those issues.

Here are some pictures I found online of g tubes (i am not including a picture of Max or Addie's g tube because I don't know how they would feel about that down the road and some people do find it a bit sqeamish so I figure a diagram is better)

This picture shows how small the g tube is.  It is a tiny plastic thing that you put in deflated.  Then once in you fill the little balloon bubble with water and it holds it into place- nifty!

So for now, Max and Addie can both get all the nutrition and water they need through their g tubes.  We give Addie 12 60ml 'boluses' or syringes of food throughout the day.  She cannot go more than 3 hours without more liquid for her kidney right now.  Then overnight a pump feeds her for 10 hours at a slow rate. She gets about 1.5L a day.  Max will follow this routine after transplant. We would love to see her eating more of her calories through food and drinking more water on her own but right now, it's just not happening. In theory she should have an appetite again and she is certainly capable of eating, she just has learned not to. Because of needing to keep her kidney hydrated, I don't think she is ever really hungry.  So she doesn't think she needs food and for whatever bizarre reason, she doesn't seem to find it tasty so she doesn't eat. She understands the social concept of eating and sits with us and puts food up to her mouth, takes bites even, and then spits them back out and continues this process of 'fake eating'.   We have tried all kinds of delicious foods too! We try ice cream, cheetoh puffs, fruits, crackers, icing, pudding, cheese, bread etc.  She actually will lick icing off her fingers some and licked Cheetohs but actually eating, yeah still not really happening. 

Chocolate pudding sure is fun to make a mess with! Eat it? No thanks.

I prefer my food to come from a feeding tube... yes, she will actually drink milk from her feeding pump but not from a cup.  What an adorable little strange child she can be!

One day Addie has to eat and I believe one day she will.  I actually am really excited for some good peer pressure to kick in- I figure one day she will understand that everyone else enjoys food and maybe join in for sheer desire to fit in.  But we are a while away from that.  I'm not sure how we'll get her to eat.  I've read about these like hard core summer camps for making kids with g tubes learn to eat.  Maybe she'll just get it at some point, maybe it'll take extensive therapy.  Not sure.  But what I do know is that it isn't our biggest problem right now.  Her g tube is making sure she gets plenty of food and water and it also makes giving meds really convenient and safe.  So for where we are right now, we are thankful for her g tubes and thankful for tube feeding.  And for Max, I imagine we will keep tube feeding him for quite a long time because of his weak swallow so we are even more thankful that such an option exists for him. So, even though feeding issues have been quite stressful, right now we aren't getting super worried about it.  We are happy they are staying healthy and we'll figure out the rest as we go. 

No comments: