Monday, March 10, 2014

More about the tube

This is going to sound a little crazy but the tube was more stress on me than her heart surgery was. Only because the surgery and recovery lasted three weeks but tube feeding went on for months. It doesn't seem like a big deal but there was a lot more to it than most people realize. First off, I felt like it was holding us back. To feed her, we had a pump that connected to the tube which hung from an IV pole (right in my living room and always in the way!) So if we wanted to go somewhere, I had to bring this huge syringe (sort of like the one you use to dispense medicine but much bigger) and manually push her formula through her tube, I had to wait a minute or two before pushing another 2mls through. It took forever!  Not only that but if we were out somewhere and she pulled it out, I had no way of putting it back in by myself so she would have to wait to eat until we got home. For that reason, I didn't go out much. Another issue I had was the fact that they gave us a certain amount to feed her every three hours, so let's say 3oz every three hours .. the problem with that is we had no idea when she was actually full, the only way we knew was if she started throwing up. Throwing up is NOT fun so that was hard for me to see her go through. On the other hand, sometimes 3oz would be fine but how would I know if she was still hungry or not? We had no clue. Plus, I don't think she even understood what hunger was because in her mind she was magically being filled with formula so she never even got a chance to feel hungry. Babies who are not tube fed don't drink the exact same amount of formula every feed, sometimes they drink more, sometimes less but with Olivia we really didn't know how much was the right amount so it took a lot of trial and error. The tube had to be taped to her face (more and more tape the older she got) so that she wouldn't pull it out. If she did pull it out, we had to reinsert it which was a nightmare. I'll get to that in a second. So to say the tape bothered her skin would be an understatement. I tried so many different tapes, lotions and creams to protect her little cheeks but nothing worked. She has very sensitive skin and it would get so bad that her cheeks would crack and bleed sometimes. What sucks about that is.. that meant we had to switch the side that the tape was on very often. It wasn't just re-taping, we actually had to remove the tube and switch which nostril it went in.

These two pictures are her cheeks at their worst. I can't count how many times people asked me if she had rosacea or eczema. When strangers asked, I would just say yes. I was not going to get into the whole long story with someone I didn't even know. At the time I didn't realize how truly bad her cheeks looked but looking back at these pictures, it was pretty bad. Happy to say that her cheeks are clear now and she has no scars from it (which I worried about).

Let me paint the picture of inserting the tube for you.. I got all the supplies needed to change the tube (new tube, tape, scissors, gel etc) and while Paul held her down (she was already screaming at this point because she knew what was coming) I had to put some gel on the tube and slowly feed it through her nose until it got down to her stomach. She would shake her head and scream at the top of her lungs (An adult who had an ng tube inserted described it to me as a very unpleasant experience, your throat burns and it's just uncomfortable, every time you swallow.. you can feel it. Something is up your nose so your natural reaction is to get it out but you can't). I understand why she was screaming but it made it much more difficult for me (she really proved how strong she is). Sometimes she would win and I would have to do it three or four times before it finally went down all the way. By the time we were done, I was sweating. Then I had to use a stethoscope to listen to her stomach while I pushed some air through the tube, if I heard a gush of air, it was in. If I didn't hear it, that meant it was possibly in her lungs. Of course you can't feed formula into someone's lungs. If that happened, a trip to the ER would come next (luckily it never happened). Getting it in the right spot was crucial, I hated knowing that her health rested in my hands because again, I am not a medical professional. So that's pretty much the low down on Liv's tube days.. I can honestly say that I don't miss tube feeding AT ALL. Things have been so much easier since she's been off of it, I know she needed it at the time so I did what I had to do but I am very thankful that those days are behind us. The ng tube gave me a whole new perspective on tough love.

Tube or no tube, Olivia is beautiful! This is how I remember the first five months of her life. Her hair cracks me up in these pictures! Whenever we were going to change the tube, I would snap as many pictures as possible so we could have some without it. Although I took tons of pictures with it in, I never really shared them because I didn't want to get tons of questions but now since everyone knows the story, here's my former little tubie. 

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