Mommy report: Update, part 1--Feeding

Dishes, showering, laundry—all on hold. I just can’t keep putting off an update on this girl or I’ll forget all this before I can get it down. Since this is my main record of Braska’s goings on, it’s important at this stage.

We’ll start with feeding, and there will be at least a few other categories to follow soon.

To refresh for anyone who might be a newer friend here on the blog, Braska doesn’t eat orally, not regularly, never has. She has a g-tube/button, and she gets all her nutrition via Pediasure through her button. She has no medical issue that causes this problem. This is not a “Down syndrome thing.” She chooses not to eat. She does not show hunger or thirst, and she couldn’t care less if she eats or not. This is a behavioral issue. Even with our ability to feed her without her help, she still has always been underweight. At 34 months, she is just under 22 lbs. Because her weight is low, we cannot do more stringent caloric challenges (holding back on nutrition/food/milk, causing her to become more physically hungry and want food) because she’s not got any weight she can afford to lose in that process.

[Edited to add: Because Braska insists on being different, her oral motor is NOT as poor as one would think for a non eater. As most of you know, her speech is extremely good and she does not sit with her mouth lax or open, and her tongue is generally in her mouth with her lips closed. Our first speech therapist said her great jaw strength is due to the fact that she spent all her time keeping her mouth clenched to resist food. Ha!]

The day Kinlee was born, Braska ate some pudding, if I remember correctly. But she ate that day, and the following days. It was very small amounts at first, a tablespoon or two on a good day. Sometimes only a spoonful, but we offered it and required that she eat something a couple times a day. After about a month, she was eating fairly consistently at the 2-3 tablespoon mark, usually twice a day. We started up again with her nutritionist/feeding specialist, and I could tell immediately that it was not going to be a good thing.

You see, the smallest thing can change her course when it comes to feeding. A strange person present during feeding, an unpleasant experience because she’s too tired. A little choking sensation, though recovered quickly, can ruin her for days. When the nutritionist came that day, I had a bad feeling. She’s not a bad person, but I just had a gut feeling it was too soon for Braska. And I was right, unfortunately.

She refused to eat for her, and she then refused to eat for me for the following 3 weeks. Yep, it can go just like that. She decides she won’t eat, and that’s it. There’s no “oh, she’ll get hungry and eat” thing. She can go days without food or drink and still not ask for it. She’s shown that by ending up in the hospital when she was younger. Super stubborn is her thing.

With alot of work, we got her back to eating a little, and she has continued to progress slowly. We cut out her feeding time with the nutritionist, and made those visits only about making sure she was getting enough and doing a weight check. This has gone well.

Most recently, she’s been surprising us with how much she is accepting. Generally, her habit has been to just taste things. She would accept as much liquid (like a sauce or something) that would remain on a fork. Not much. But taking quantities of food has never been something she’d do. She also has always been a high-flavor girl, preferring tastes that are very spicy, highly seasoned. Nothing as bland as baby foods or unseasoned vegetables.

But lately she has been taking baby foods, straight from the jar, sometimes with added fat and calories from various sources. And she has taken an entire 4 oz jar at a sitting on several occasions in the last couple of weeks. That’s a BIG deal around here! She is also becoming much more willing to take whatever is offered. She hasn’t really rejected a food in a while. She’s also taking sips from a sippy cup with no no-spill valve in it. Very small sips, but it’s something. No straw, no open cup, and of course, no bottle.

She still doesn’t ask for food. She will not remind us that it’s time to eat if we’re busy and don’t offer solid food. But she’s accepting it when offered with greater consistency. Sometimes she will still get obstinate and not want to open her mouth, but she can be coerced with minimal work. That’s great progress for her.

Textures and self feeding are still a long way off. She only takes pureed foods, yogurt, pudding, with the most textured accepted food being baby oat cereal with Pediasure or juice. She takes it a tad thicker than Kinlee does, but still not that challenging. For now, we’ll continue to work on quantity. Soon we’ll try to address textures, attempting to chew (which she will NOT do at all), and self feeding.

Feeding issues are so frustrating. And I’ve yet to find any other kid who is as old as Braska, has no medical issues related to feeding/digestion, and still refuses as thoroughly as she does. It’s not like she only eats 5 things, or she only wants PB&J with crackers for breakfast, or she won’t eat her vegetables at dinner, or even that she’ll only take a bottle. It’s lonely in this kind of position, and there’s not alot of info out there, but that makes our progress even sweeter.

We know very well that she could decide tomorrow not to eat for days, weeks, or months. We always rejoice with a bit of a guarded sense. But I’m glad she’s come this far. We’re working very hard to protect the experiences so that we don’t suffer any setbacks. I’m proud of her that she’s come to this point.

Stay tuned for update, part 2—gross motor.

Two hospitals in one day

Mommy and I went to St. Louis again yesterday for some more doctors and stuff. We left very early in the morning. This time, we went to a different place than where we usually go. We went there because they have a big place just for kids like me that are little but need glasses to see better. Mommy told me that when I get my glasses that I will see all kinds of things I don't get to see right now. I'm not sure how that works, and I don't like when they put the glasses on my face to try them on, so I don't know if I'm gonna like this thing of wearing glasses.

First we went to St. John's so we could pick out my glasses. Miss Mary helped us, and she was very nice. Mommy put some of them on my face, and they kind of make my nose feel funny. She decided which ones she liked, and I told her they were my favorite too. And guess what color?? Pink, of course! We will have to go back and get them in a couple of weeks. I sat like a big girl while Mommy was paying for everything. There was alot to look at in there!

While we were waiting to get done, Mommy asked Miss Mary about our new little friend Levi who was in that hospital, but he got moved. I'll tell you about him in a minute.

After we got done, we met Auntie Rachel for lunch since we were close to where her new job is. She works for a different hospital, but we thought two in one day was enough, so she came to meet us at the lunch place. I played with the shiny paper that the chips were on, and then I sat with Auntie Rach for a while and tried to grab her pizza. Mommy said I could eat some if I wanted, but I didn't...I just wanted to play.


We finished up with lunch real fast and went to our regular hospital called Children's. I met with another nice Miss Mary who talked to Mommy about how I eat. She said they were going to do something called a swallow study, but Miss Mary decided pretty fast that I didn't need to do that. I swallow just fine, thank you!

She watched while Mommy fed me some, but I didn't really want to eat. Then Miss Mary gave me a thing called a Crunchie. It was pretty fun to hold on to and after she put it on my mouth, it kind of tasted good too.


I even held it by myself, which made Mommy all surprised.

After we finished with Miss Mary, we had some extra time, which was very good. We went to find our new friend Levi. Mommy knows the story better.

I knew a guy in high school from church camp, Michael, and hadn't really thought about his family in probably 15 years. My parents have kind of kept up with them. Earlier this week, Michael's wife Carrie had a baby, Levi, who was born at less than 3 lbs. He has some major heart issues and will need multiple surgeries, but currently, they're working to get him to at least 5 lbs before they can consider operating. When Carrie was discharged from the hospital, they transferred Levi over to Children's. Since we were at both St. John's (where he was born) and Children's on the same day, I felt strongly I was there to make contact and offer a little encouragement, even if I hadn't seen them in so long.

I'd never met Carrie, but I waited in the NICU waiting area until she and both her mother and Michael's returned from grabbing lunch. It was nice to see Michael's mother again, and Carrie and her mother were both very sweet. I talked with them a little bit, just trying to encourage her. She told me the doctors had given them the possible scenario that he might not ever come home, and they asked her and Michael to consider the possibility of taking him home soon to simply spend what time he had as a family. How can that kind of a decision be made? How difficult that must be?!

So your prayers on Levi's behalf are appreciated. I'll be checking in on them again when we're back there soon if he's still inpatient.

After we checked on Levi, we went down to wait to see Dr. R. I spit up on my shirt, so Mommy just took it off. It was alot of mess. That's why I've got no shirt on. I thought it was pretty fun to play around like that. Mommy kept a blanket on me so I would be "proper."


When they put me on the silly scale, I was 15 lbs 0.8 oz. Finally made it to 15!! Mommy was happy about that. Then she put me in clean clothes and she was happy again. Dr. R thought I looked pretty good, and my button too. He said Mommy could start feeding me different. They talked about milk and something called Pediasure.

When we came out from seeing Dr. R, it was snowing! Mommy called Papa Beagle to see what the computer said about the weather, and we decided not to go home. Mommy doesn't like to drive in the dark and Papa said it was gonna be slippery too. So we decided to go to Grandma C's house for the night. We watched the Bears game with them and Grandpa J played with me by the neat tree they had in their big room. It had lots of lights!

Today we came home before it got slippery again. Our house got lots of snow! It was good that we didn't go home during the snow, because we saw a whole bunch of cars that slipped off the road during the night. But we made it safe!

Mommy report: Good GI appointment

We met Dr. R, the pediatric gastroenterologist, today for consulation regarding the G-tube. My issues with it are really just trying to determine how to decide when it's time to look that direction. He was very informative about what it entails and it's risks and benefits. But the good news is that he said, although she would be a candidate, she is not at the point where she NEEDS to go that route. That's good, as far as I'm concerned. Since she is not having any necrosis concerns in the nose or throat, and since she doesn't seem to eat or nurse any differently when the tube is in or out, we are not at the point where we need to get the NG out for good right away.

She has eaten (breastfed) much better the last few days, so that is encouraging. She was going to spend this upcoming week with Grammy Jan so I could get some much-procrastinated work done, but since she's doing better and being more consistent, I'm not going to give up on her yet. Dr. R agreed that we should continue to work with her on this and other oral therapy helps and touch base with him in a couple weeks. He did order some blood work, and we had it drawn after the appointment.

On a separate topic, but still GI related, he is concerned about her constipation history along with the DS diagnosis, so he recommended that we do a biopsy of her rectal tissue (ewww and ouch!), and we've scheduled this for Monday since we're already down here. We've made arrangements to stay the extra day (Thanks tech group for being so darn flexible!!) so we'll be able to get that taken care of Monday morning. He's looking for Hirschsprung's disease, or hopefully ruling it out, but I hope it's not too traumatic. They don't sedate for it, but it's supposed to be very minimally uncomfortable. I have to say that after researching this quite a bit, I really don't think she has HD, but since the procedure to verify that is minimally invasive and quick, we'll go ahead with it.

Thanks for all prayers and well wishes. I am praying hard that she continues to feed well and even better all the time. I'm optimistic that she can overcome this feeding stuff without resorting to the G-tube, but I'm aware that it might be necessary at some point. For now, we'll keep working on the progress we've started.

And now, it's feeding time again.

Mommy report:Back to the tube

(Fair warning, possible TMI...I don't usually talk much about breastfeeding, but for the purpose of explaining the situation, it's necessary. I'm not all that comfortable with it, but maybe sharing will allow some good advice from some of you.)

So after an exciting discovery that Braska had gained 2 oz over the last 12 days, the afternoon yesterday started going downhill. She started acting a bit irritable and uncomfortable to start with. As I did my general analysis of the possible causes (yeah, I'm that way), I realized that previous to the 4 days that she's been sans tube, she had been consistently on it for 3 days, during which we'd filled her as full as possible. I had meant to have her weighed at the end of those three days, but I didn't get up to the dr's office to do it. That's important in that I think she probably had gained more at that point and is now down a little to the current 11 lbs 14 oz. I'm judging from how she fits in her clothes and her demeanor. The other factor is that while she's been nursing and taking solids somewhat better than normal the last few days, I have been worried and now feel sure that she still is not getting enough fluid since my milk supply is down.

Last evening while we were at Randy and Karen's she got quite fussy, and in a different way than usual. I started reviewing all the recent situations and was concerned that she was just plain hungry and possibly starting to feel dehydrated. She ate pretty well before bed, so I thought I'd address it further today. Two things changed that. First, I got up to pump at about 1:30 am (yes, after seven months...still pumping during the night...grrrrrr). It had been about 4 hours since the last time, instead of the usual 3 hour cycle during the day, but I only got about 40 cc or just over one ounce total. That's not a good sign, per past experience. This has happened the last couple nights, with the total decreasing each night. But she has been doing pretty well nursing during the day, seeming to get plenty each time, making plenty of loud swallowing sounds, which she didn't do previously, so I hoped that she was taking in enough. Then, she woke up at about 3:00 am. This is important because she doesn't wake up at night. And when I got her up, after I'd just pumped less than 2 hours before, she was anxious to nurse, so I let her try, and she seemed to be taking in some. That is, until she spit up everything she'd just had. She started throwing a fit, but made no tears. This was much the same as the last time she was dehydrated, although not as bad as then, thankfully. I woke up Muncher to walk with the screaming baby while I got things ready for the re-tubing. Once we got the tube in and food started, she calmed down and went back to sleep. I filled her full then and once more during the night, and this morning, although she's not back to her playful self, she's better and seems to be "juicing up" again.

So it's back on the tube for now... if it turns out to be more than a week or so, we'll have to walk the tough decision road toward the G-tube. In the meantime, I'm working to increase my supply to see if we can try it all over one more time. Here's hoping!