Operation Feed My Child

The experiment in real food is going phenomenally well. I have even been able to give Mya a small meal before school most days. In the past I have been too fearful to fill her belly before putting her on the bus and so I am sure she was just starving by the time she got home in the afternoon. She gets two 60cc syringes full of food for each of her afternoon and evening feedings and a single syringe in the morning. At her best on formula we were running her over an hour and most lately for the better part of the day. Now she gets a whole syringe over a few seconds and then we come back about 15 minutes later with the second. No gagging and no choking in a full week, unless you count the mornings after her formula feeds. This means we can work with her in the afternoons, she gets to be in different positions more often throughout the day and she gets to be held at night again.  It is a little more work for me to come up with a meal and force it through our $20 Walmart blender but she is now my best eater. She gets a balanced diet of food I can pronounce and she eats it all. Mostly she is just eating some variety of what we eat, in perhaps less desirable combinations. Chicken salad-peanut butter-apple sauce smoothie anyone? Tonight she had chicken fajitas with us down to the homemade tortillas and refried beans. I've been filling this child with seizure meds that don't stop seizures and formula that makes her sick for so long that it is nice to give her something good for a change. Thank God for the internet and the fantastic network of moms I have found. Next up, tracking down a dietician who is on board and a blender that plays a little nicer with homemade tortillas. We can do this Mya.

If I had a million dollars, I'd buy more hours in the day.

She lights up. When her head hits your shoulder and she settles in she just relaxes. When you snuggle up beside her on the bed her breathing quickens, she gets her happy arms and she calls out her joy. You touch your hand to her fist and she reaches out for more. She loves the closeness, she needs the touch. She really just lights up when you are being with her. I think we forget sometimes how much she needs us to just be with her. We have her food to make and machines to clean and way too tiny purple pills to pull apart. We have calls to make, to fight for her, to schedule for her, to order for her. And she is not an only child. It takes time, all of it, and it leaves us with just a little less...everything. But to feel her light up is everything.

Most parents, this one included, connect with their children in hundreds of ways throughout the day. So much so that we take for granted the touches and the conversations. I handle crises with a chat on the lap and high five for a job well done. They pull on my shirt so I can watch them dance or beg me to sit down and play cars and then look me in the eye as they tell me I am doing it wrong. They seek it out and pull me in all day long. Mya is content to sit. As much as we roll her around and talk to her and try to bring her into our day she really thrives when we are able to join hers. I hate how little time we have for that. I am going to work on making time for that.

I never would have thought to put that together, but it works

At 8:30 last night Mya was still working on digesting her lunch that she started around noon. Being a school day, it was her first meal of the day. I don't send her gaggy self to school with new food in her belly. Finishing lunch at 8:30 means she didn't get dinner, but also that I was super nervous running her overnight feed. So we will call that the last straw, for now. Today she got to try some real food, through her tube with a little help from the blender, and so at 8:30 tonight she was just finishing her dinner. That means I am still a bit nervous about starting her overnight feed, but she actually got in all of her calories today. Not sure when the last time was that happened. So far we've had no gagging, but I am saying that with a whisper. Come on Mya, please let this be an option. We will figure out the logistics later.

I have always wanted to try a blenderized diet with her and it came up in conversation with some other moms the other night so it has been on my mind. Until now my love of my own sanity has prevented me from giving it a go. I am a firm believer in real food in my own diet and knowing that the second ingredient, to water, that I feed her every single meal is corn syrup is not lost. People are supposed to eat real food, not formula, but with 'tubies' real food is a lot harder to manage. Compared to opening a can it is a lot more work finding the right calories and fat/protein/carb ratio and making sure that the foods that can provide that are dense enough so that she can manage the volume. She cannot tell us when she is hungry or full or what she is craving. She also requires a lot fewer calories than her typically developing peers and so getting the right balance of nutrients with those calories is a whole lot easier with a tube-feeding formula. Add potential clogs to the tube and the medical world is often pretty hard to convince. So, for now, we aren't asking. If I don't have to clean up vomit or watch my daughter choke every day I am willing to navigate a blender.

For lunch today she got bananas, honey, almond milk and a bit of spinach. For dinner she ate some of the pumpkin pasta we had for dinner mixed with some pure maple syrup, almond milk, a few slices of carrot and a fried egg yolk. I tasted them both, so did she actually, and we both agreed hands down it was better than formula. Plus, no corn syrup. Win Win Win. We will see where this goes, but so far we are having fun discovering new foods together.

Don't mind me, I am just pulling air out of my daughter's stomach. Enjoy your lunch.

...you get some looks.

I walked around with vomit on my pant leg for two days. It's not that I didn't see it, I am just getting really used to vomit. Is that gross? Things have stopped being gross. Except boogers. I still hate boogers. We are going through a rough feeding patch. Mya can't seem to tolerate her old feeding schedule and so we are constantly re-evaluating how much we are going to try to get into her that meal, how quickly and making sure she gets vented (which is basically burping out her tube..gross?) a lot. Sometimes we miss the mark and she is quite unforgiving.

We saw GI last week to rule out a 'fixable' issue and didn't really get very far. We started her on a trial of reflux meds to see if maybe she has some damage due to stomach acid that might be treatable. Normally a child would be in pain and complain during feedings if this was the issue, but we know that Mya has an extremely high pain tolerance so it is possible that she could have something going on and we wouldn't be able to tell. It felt a little like a shot in the dark and we are nearing the two week mark with little change. The next step would be to run contrast through her tube and watch how everything 'flows'.

In the meantime we are doing our best. Sometimes our best means catching vomit. I am getting quite skilled. One day last week she got 'the look' as I finished strapping her into her stander. So I grabbed a stack of burp clothes and proceeded to catch 'the flow' in burp clothes, while repeatedly and gently placing the lovely bundles on the hardwood floor. It took 5. The stander survived quite well. Ella and Clayton are no longer phased about the flow and are increasingly less responsive to my calls for help. Just give me a minute guys, I will help you with your puzzles after your sister stops choking! We make light, but really the vomit is kind of a big deal.  It comes out her nose along with her mouth and blocks her airway, sometimes for the entire time I am running for suction. Add to that that she is now eating almost continuously when she is at home and isn't tolerating really any position but her feeding chair while she is eating so working with her on any sort of therapy is just hard. We are really in need of a solution here. I have been told that sometimes there really is no solution and that we may just have to keep doing what we are doing. I really dislike that answer, so I will keep looking.