I haven't posted lately because there really hasn't been anything to update. The entire month of April was spent working on getting Andi to tolerate her g-tube feeds. Since fixing the leak, it was tough to get her to tolerate the volume being pushed on her. We went from 85 ml/hr (with leak) to 90 ml/hr (no leak) with a lot of vomiting 3/4 of the way through. So, we slowed it down and gave her more time to receive & process the volume. She went to 45 ml/hr with a total of 90 ml. So she'd feed for two hours, with a one hour rest, then start feeding again. Too much. Throughout the month, it was puke prevention patrol every feed. Venting when she got fussy, so we can remove the air and make more room for formula. I worked very little on oral feeds, because besides not being hungry, I wanted to really concentrate on getting her feeds tolerated, sped up, increased. We also went from 27 calorie formula, to a 30 calorie formula - by adding Polycose. As of yesterday, she was tolerating a rate of 78/total volume 87. So, she was really taking on more, leaking less, and puking less.
So, today, we went back up to the hospital where their feeding clinic is... and little Bean weighed in at around 13 lbs., 2.2 oz's. Yep, if you recall, that's pretty much the same as where she was two weeks ago. I think she's officially 26" too, as she was finally measured a different, more accurate way. She seems bigger, heavier to us... but...!? Her lyofoam (part of the g-tube gerry-rigging) slipped out last night, so she leaked through her bedding again. I also stopped her nighttime feed at 3:30 a.m., as they wanted her to come to the early morning appointment hungry. Plus, her skin is a bit dryer today, all point to the possibility of her being a bit dehydrated.
Meeting with a whole new team today, I had 11 months of Andi Bean living to regurgitate. I felt partially like a recording, partially like an idiot, and partially like I came across like I think I know too much. It's weird. Here are these highly educated people, and they don't know us, they don't know Andi, and in the course of an hour or two - I have to get them up to speed on someone I've gotten to know these past eleven months, the first five of those she was pretty out of it with ill-health, dope, or hey, the fact that she's an infant? I gave my speech, then new people emerge, and I gave it to them as well. Some more detail, some editing. It was a feeding clinic, so you have the pediatrician, the dietitian, the feeding specialist, and we had a nursing student. My stance is the more people I have looking at Andi, the more input or ideas I can get on how to help her progress.
The dietitian increased us from 30 cal to 33 cal. Our g-tube feeds are now 85 ml (4 x's a day), and 30 ml/300 ml total at night. In addition to that, I need to give her 30 ml (1 ounce) of water or pedialyte 4 x's a day as well, to help with hydration.
The feeding specialist liked Andi's work with her spoon, drinking from the cup and with a straw. It was when Andi got a chunk of solid (cheese puff) in the back of her throat she started to choke, gag and gag, then puked. Her g-tube stuffing got wet from the liquid she drank. Yes, it's a massive eye roll going on over here. They've ordered a swallow study to determine if the thin liquids are a problem for her, as she coughs a bit. She also is supposed to only use the straw until the swallow study, because her head placement is protected, whereas, when she drinks from her nosy-cup, she tilts her head too far back, and opens herself up to the liquid "going down the wrong pipe!" and thus, coughing. So, I've been given a laundry list of things we can work on. The swallow study should be in two weeks, and then she wants to see me back in four weeks. One thing I appreciated that the feeding specialist asked me is what my goal is for Andi. I really dug her opening up that door, because I like to make it clear to everyone and their brother that the g-tube is complete failure for us, and we want it gone as soon as possible.
The pediatrician looked Andi over as well. She was pretty pooped by then, and she really objected to his man-handling. He said a few things that were new and helpful. First of all, his mention of the GJ was immediately shot down. I think I actually dropped a few inappropriate words in my several monologues, nothing too lewd, but, the GJ is just not a viable option for a little girl whom I'm already having trouble keeping still during a regular g-tube feed. Despite a seat belt, she tries to roll over on her contour pillow, even flipping over, plugged into her feed. Or worse, grabbing onto the tubing, as she's becoming more and more aware of it. A GJ tube, if yanked, would require an x-ray to check positioning, and I just have to put my foot down here and say no! The g-tube was supposed to be the perfect option for us, and that is a complete failure that has cost me countless hours of appointments, gazillion loads of laundry, and the piles of insurance co-pays... oh, hell no to upgrading to the GJ. No.
Ooh - so, I totally went off on a tangent. Shocker. I am trying to recall what interesting tidbits he had to offer. He had said that he had worked with a few CHARGE kids before, and that lack of growth was a genetic factor of CHARGE ('G' in CHARGE.) I asked about the growth hormones that I read about on some website, and he said that the growth hormones would only make her grow a couple of inches in height, maybe fill out a little bit, but it would also increase her caloric needs and they usually don't give them to kids under two. Ah, the other interesting contribution was about Andi and her nasal suction machine. When he was handling her and she got pissed, I took her and put her up on my shoulder. I noticed that she was sounding snotty and mentioned it. He said, 'yeah, she's about to leave a bit of it on your shoulder.' I laid her down and got out the dreadful bulb syringe, and held back her arms with one hand, tried to hold her face still with that same hand, and then used the nasty bulb syringe to retrieve the green snot out her nostril. He saw our fight and in discussion, I mentioned that I have a nasal suction machine at home, and it's just as big of a fight to get to use it. He said he had a kid with some sort of nose problem and he just would spray the nose with saline and then put his kid on his stomach and hope that he sneezed it out. The fight with the nose, or anything with the face, can cause more trouble by creating an oral aversion. Their instinct can become to protect the face, whether it's food or suction, or whatever...it's something that we have to be really conscious of... ['Joy! I'll add it to the list!'] But seriously, that was something I may have heard before, but didn't really hear it.
The feeding specialist said by looking at Andi today, her feeding, her physicality, that although she is eleven months old, she is around a 5 - 6 month old. We have some serious catching up to do.
I'm rather surprised by the lack of weight gain. I'm wondering if some of that was dehydration. Looking across the room with her snoozing during her afternoon bolus, I see a little girl on a pillow. She's no longer a little girl though. She's grown so big, only having six inches until she fills the entire contour pillow. Growth has been slow, but if I think back to where she was just a few months ago, it amazes me to see how far she has come.
It'd be even more amazing, I'm sure, had she been getting full feeds all along. I can't even imagine how much stronger she'd be, if she had full nutrition. It makes me mad to go to that dark area of 'what if's' and 'wtf's' and so I don't normally allow myself there. It doesn't do Andi any good. It does however make me stronger when it's time to say 'no!' to something a Dr. suggests, standing firm in my decision. They may be more educated than I, but, I know my little girl and I live this life 24 hours a day, whereas, they just get a glimpse of her in the course of an hour or two.
All that being said, I strongly believe that kids are resilient, and she will go through spurts of growth. Andi's going to be great, super strong, and will advance faster than they say she will. The Dr. said that depending on how the swallow study goes, he believes that Andi might be able to get off the g-tube within six months. As Dr. Mom, given a normal swallow study, my goal is to cut that timeline considerably.