Big News!!!! Button Free!!!

Mommy note:  Tonight as we were leaving the in-laws’ house at about 9:45pm, I heard an “Uh-oh” and turned around to see PaPaw holding Braska button.  It was not attached to her. 

We all kind of paused, I said flippantly, and half joking, “Well, I guess we’re going to be done with that now.”  I then quickly had anxiety start creeping in.  Over the next minute or so, quick conversations happened, and M agreed that we were probably ready to just let it stay out.  We were 45 minutes from home, had no supplies with us to reduce the balloon (which was still intact, weird as that always seems to me) and put the button back in, so we had to make some decision pronto.  Break the balloon in order to get it back in and hold the stoma open---but we don’t have a back-up button at home---OR just call it done and move on.

I called our nutritionist right then, not realizing until it was ringing that it was 9:45pm.  After a quick chat with her, and her assurances that she felt Braska was also ready to let the button go (we have discussed this recently, possibly planning to take it out in the next month or so), I agreed that this was our pivotal moment.

This is the moment we have been working toward for 5 1/2 years. 4 1/2 years with the g-button. 

So we put a makeshift bandage over the stoma, which was not leaking one drop, even though she had just had a late meal, and gave hugs and goodbyes.

As we were leaving in the van, I said a quick prayer that it would be all good. That she will continue to do as well as she’s done.  That the stoma would heal quickly and without complication.  And that I could adjust to this new strange life.

Because it seems like it is a new strange life, and it’s only 90 minutes old.  I suppose when everything has been about feeding, and getting off the tube “someday,” and being a mom of a tube-fed kid, it just feels really odd to have a sudden change in identity and shift of goals. 

But it’s a good strange. A positive odd-ness.  I’m excited…

Braska did stop to look at what was happening, she seemed slightly confused, but went right back to wrestling and playing immediately.  She’ll not miss it one bit, if my guess is right.

So celebrate with us, pray for her continue progress, and if you’re on this journey, know that it CAN happen…  I am realizing that I never really visualized that this day would come.  But it’s here. And I’m going to have to adjust to this new button-free “normal.”

One week is in the books

One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard.

At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process.

Don’t think that she’s just up and guzzling down her fluids. To get about 4 ounces in her takes about 10 to 15 minutes of constant work. She gets a break and then it is time to try again, with either more fluids or something to eat. We have to do food/drink in staggered amounts because she doesn’t hold very much at one time.

Because of that, the non-use of the tube has definitely created more work for me, and for M when he’s in the feeding role. Much more time is devoted to getting her food/drink in orally than when we can rely on the tube. But we are sticking with it, and she hasn’t fought us too hard yet. I think we can get there, even if it is slowly.

We’re already in to this process almost 5 years. Now we’ve got one week toward the next chapter… I’ll take that.

Mommy report: Two days. Tube free.

Short and sweet.

Braska has had no tube feedings since Tuesday morning.  None on Wednesday, and none on Thursday.  She had 20 ounces of fluid yesterday, and about 23 today.  All oral.  Hard to believe, even though I’m right here for all of it.

It’s a struggle, but she’s showing improvement each day.  She hasn’t asked for “milk in my belly” at all, a favorite request of hers. 

I’m exhausted, but it’s ok.  Though the effort required of me at each feeding/drinking encounter multiplied greatly versus the super simplicity of the g-button, she’s the one doing all the work.  It is really hard for her, but she is managing like a champ.

Practice practice practice. Drink drink drink. That’s what’s on our schedule.

Oh, and tomorrow morning is our follow-up appointment from the May eye surgery. Expecting to plan for the date of the next one.

Popping in for a sec

A few things to note…

• I’m working on a blog re-do, to represent a different approach to things blog related as I move forward.  I hope to have it up this weekend. No promises.
  
• Braska’s finished day 2 of a 3-day wean (tube feeding transition tool…measuring ability, not actually weaning) I’m documenting that over at her blog if you’re interested.
  
• Tonight we had medical exams for new life insurance policies. I’m 5’2”.  Not 5’3”.  I’ve been fooling myself thinking I had an inch I don’t have.  But oh well, still just plain short.
  
• We’re in the middle of setting up a special needs trust and doing our wills.  Hence the aforementioned updated life insurance policies.  It’s important, but it’s a lot.  I don’t mind the “someday I’ll be dead” thing…I’m good with all that completely.  But all the arranging and considering what we want for the girls, especially Braska, when she’s a teen and beyond.   Writing the Letter of Intent that specifies SO many details of what we hope her life will be like and how we want it to look as far as we can see. It’s hard to think like that. My brain doesn’t work that way.
  
• Kinlee is such a funny girl.  She tells knock-knock jokes, she does impressions of other people, she has a few fake voices and distorted faces that she pulls out here and there for a laugh.  It’s enough to make us just stare at her occasionally.  The kid is not even 2 yet.
  
• I really need to do another installment of Kinleeisms.  They are unbelievable. The girl has great sentence structure, pronouns, tense, proper use of possessives, and on and on.   She’s a little tiny adult, with the full ability for conversation and real discussion, and she converses CONSTANTLY.
  
• Someone bought me a new pair of shoes yesterday. They are AWESOME.  I cannot wait to wear them. I have a lot of foot pain, so to find a shoe that’s classy looking AND comfy. Really honestly comfy!  I’m still blown away.  I even wore them around the house last night. Just because.
  
• It’s amazing to me how something that has been long anticipated with excitement can become totally revolting in the split second of a condescending glance.
  
• Tomorrow begins wildcard weekend.  Should be some fun football, even though the Bears have a bye this week. Enjoy!

Mommy report: 3-day wean, day 2

Yesterday went pretty well overall. At dinnertime, Braska was not much interested in taking anything. It took alot of prodding to get her to take her soup (vegetable beef soup, condensed, with only a slight bit of milk added to reach the right consistency. Pulsed with immersion blender.) but she got it in. The oral milk intake was even more of a challenge. She ended up taking about 1 ounce before I gave up.

For the whole day she got 31 ounces of fluids in, 5 ounces of whole milk orally and 26 ounces of the "50/50" Pedialyte/water mixture. The poor girl was going through diapers like never in her life. And she didn't really care for all the action her body was experiencing. She seemed uncomfortable, but not really unhappy.

Of course she woke up this morning in a totally wet bed, wearing completely wet PJs. That's the first time that's ever happened, with only a couple previous experiences of ANY diaper leaks at night. And she generally has 8 ounces of Pediasure right before bed, so that's something...

Today we had a bad start, schedule wise, since we took M's car to the mechanic before work then I drove him to work, 25 minute commute each way. By the time we got home, we were already over an hour behind on the feeding/fluid schedule. But we almost caught up before lunch when the nutritionist arrived to check in.

Braska weighed 23 lbs 3 oz today, so it's good that she's not going down yet. (Kinlee was about an ounce over Braska when we weighed her too. Wow.) It was ok'd today that we decrease some of her fluids since it seems that she was overwhelmed with the constant input, both orally and via tube, and she didn't seem as interested in her oral foods as she has been lately. I think she was just flooded with the 50/50, being so much more liquid than she generally gets.

So we're down to 20 ounces of fluid each day, for today and tomorrow, hoping that she'll feel more like eating. Tonight for dinner she did well, enjoying pinto beans and a yogurt chaser. Then she asked for more yogurt later in the evening. The girl does love her yogurt.

Tomorrow we'll see how it goes, but I feel like she might do better on her oral foods again without the excess fluids keeping her belly from really getting hungry. She has never really shown any indication of hunger or thirst, but lately she has been asking for milk occasionally, so we hope that she's starting to get some sensation that she wants something to eat or drink.

As a side note, other things she likes to eat...cream-based chicken and dumpling w/veg soup, pulsed with immersion blender; lasagna, pulsed; cottage cheese with peaches, pulsed; fruit cocktail blended then stirred with baby oatmeal cereal for proper texture; pork roast with potatoes, carrots, and onions, very tender in crock pot, then pulsed; mashed potatoes (fattened up with gravy of some kind or a little butter and sour cream.)

We have to add alot of things to her foods to add calories, fat, or protein to her diet. It's hard to work the balance between the right texture, calorie density that she needs, and proper nutrition...all in little cups of puree.

Thanks for your kind words and encouragement. We have lived in this extra-frustrating and constantly-an-issue feeding world for 4 years now. We know that this isn't some drastically difficult thing, but at the same time, it is hard to really THINK about feeding/calories/fluids/proper technique this much for 3 days straight. So it is a bit tiring, but she's going to do great, and I'll survive!

Mommy report: 3-day wean, day 1

Under the supervision of Braska’s nutritionist, we are attempting a 3-day wean from nutritive support via her g-tube.  This DOES NOT mean we are ready to be done with the tube, not by a long shot.  But it does mean that she has made some very good progress.

I’m going to document some here because I know some of you are in a similar boat with feeding issues and tube feeding.  If you have any questions, let me know.

We started this morning, and the key changes to how life will go for three days are these…

• Braska gets nothing in her tube except a 50/50 mix of water and Pedialyte. Nothing of actual nutrition. Just fluid support.
• It’s all on me to be sure our schedule is open enough to allow for time to sit at the table and work on as much oral intake as possible.  We get one shot at a wean as authorized by the school district via her IEP. No pressure.
• We will be tracking every single mL and calorie that she takes in, and the nutritionist sees her each day for weight check and to tally calories to be sure we’re safely providing what she needs.
• Her schedule requires us to be putting something in her, via tube for fluids or orally for nutrition (purees/mashed meals, etc), about every 2 to 2 1/2 hours.  Hence the schedule openness being important.

I would have liked to arrange this for a Friday, Saturday, Sunday so as not to have to coordinate with a school day, but that’s ok. We made it work today, even though it meant meeting the nutritionist at the school for her first weight check and to make sure we were all on the same page.  Then I returned an hour later to give her the mid-morning fluids before her snack at school. (They don’t give her any tube feedings at school, just not necessary to do, so it was easier for me to go do it for the one time it’s needed instead of prepping someone on how to do it for one bolus feed.  It took all of 2 minutes. 5 oz.  LOVE that g-tube sometimes. So efficient.)  Now I go back in about 30 mins to pick her up. Glad that’s just one day, though.

Here’s how her schedule looks…this is fluid intake, which is supposed to be between 30 and 37 oz each day.  Which is A LOT more than she usually takes, and more than KiKi has either.  So we’ll be going through diapers like crazy, I’m betting.  (They warned me not to worry about our pseudo potty training during this wean time.) We’ve set it up to hit the 30 oz mark… these are all fluid amounts to be given at each time, remember.  Along with whatever oral food she’s taking.  These amounts can be given by mouth or by tube, but she takes very little by mouth in terms of fluids.

7 am—30 mins before breakfast—3 oz
730 am—Breakfast—2 oz
10 am—mid morning snack—5 oz
12 n—30 mins before lunch—3 oz
1230 pm—Lunch—2 oz
330 pm—mid afternoon snack—5 oz
500 pm—30 mins before dinner—3 oz
530 pm—Dinner—2 oz
830 pm—Bedtime—5 oz

So far, she had 5 oz before breakfast by tube, then she ate 4 oz yogurt for breakfast and I managed to get 2 oz of milk in by mouth over about 40 minutes of really pushing her.  But she did it.  Then I gave her 5 oz at her mid morning time and she was getting ready to have her applesauce snack at school, which she likes to finish, so 4 oz there.

We’ll see… the nutritionist will be back tomorrow mid day, and I’ll scan and email her the daily log list tonight.  I am glad Braska’s to the point we can do this and see how much she will take in, but at the same time, it’s scary to think about having to keep a schedule like this all the time if she’s going to be “downgraded” on her tube, meaning that she would be classified as needing her tube for like 50% nutrition instead of 90% nutrition, or something like that. 

At her weight check this morning, she was 22 lbs 15 oz.  She was also 35 1/4 inches. The little muffin is 4 years old! She had been up slightly over 25 lbs for a short while at her record high weight, but being “belly sick” for about 10 days over the holiday cost her well over a pound, and almost 2.  She had lost a little before the ickies when she had been doing better on oral intake.  It’s really hard to get her enough calories in foods that can be properly mashed/blended to a texture she can handle.  So we’ll be watching her very closely. 

Here’s hoping I can maintain my sanity, remember the rules and watch the clock.  Oh yeah, and not forget that I’ve also got another child and a husband (and a dog) that occasionally need to be tended to as well.

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.

Leaky belly

On Sunday Mommy was feeding me my vanilla milk when she looked and saw that I was sitting in a big puddle of milk in my chair! She put me down and Daddy looked to see what was wrong. The milk was coming right out of my second button where it's supposed to go in.

After they checked it out, Mommy decided it was time to put in a new button, so Daddy got the stuff and the new one, and he made it so it was ready to pull out easy. Then just like that... Daddy took it out! There was just my belly left with a little hole!

Mommy held my hands while Daddy was working on me, and he put the new button back in. I've had the same button since I first got it last year, so this was the first time we changed it. But it was really easy and it didn't even hurt.

When Daddy got it back in, he put water in the little balloon in my tummy so that the button stays where it's supposed to be.

Look, all done. New button!


And I never even got sad face. Just talked to Mommy while Daddy did the switch!

Better evening

It's been a nice evening. I haven't felt so icky tonight. Mommy has made me a bundled up place to lay so that I'm comfy on my back, so I don't mind it so much. Auntie Rachel and Mr. Patrick came by to see me, and Auntie Rachel brought me a pink panda! She has brought me a different kind of panda every time I've been in the hospital, so I have three of them now. Thanks Auntie Rachel!

Then Grandma C and Grandpa John came to see me too.

I showed them how I can play with some of my toys a little and I got to watch Baby Mozart again, which was fun. I decided that I'm gonna kick my foot like I always do even though it has a big thing on it and a tube in it. Mommy says that is there so they can give me medicines if they need to, but since they're not using it, I decided I'm just gonna kick it off. I'm trying hard, too!

I just had another feeding at 10 o'clock, and now it's time for bed. Mommy's especially tired, so I'm going to try to sleep all night like a good girl so she can rest too. She told me that they'll come in to clean my thing while I sleep, but I hope they don't wake me up. G'night!

Still don't wanna

So I've spent alot of time this morning looking over information about G-tubes, specifically the PEG process, which is what our doctor would use. Braska doesn't seem to be improving in her eating, and I'm just getting tired of the battle. I feel like that makes me a bit of a mothering failure, to be honest, yet I know that I've tried everything I can for 9 months now. I just hate to put her through another procedure, and I guess I've become a bit paranoid about the possibility for complications. As I told a friend yesterday, they say it's routine, but what's routine? How can poking a hole in my baby's tummy be so routine?

I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it without having to put her through this royal poking. I'm still struggling with the fact that my gut is telling me not to do it. But what is this gut anyway? My fear of the unknown, more work, new things to learn about how to care for her? I suppose I'm not so sure I trust my gut anymore, or at least about this one thing. I think I've probably thought about it too long.

When I have a big decision to make, I like to look at the pros and cons....usually making a list of them. (Thanks to Mom for that habit.) Even if I know on some level there is really a right way to go, I like to be sure I've considered all the options and made the most educated and thoughtful decision possible. My husband doesn't particularly like this part of my personality, I don't think, but it helps so much when he'll actually humor me and have a full-on, weighing-the-options, decision-pondering discussion with me. But we haven't had one of those in probably 2 years, so I'm out of luck there. He says just do it... get the G-tube, so she won't have a tube in her nose and tape on her face. Good points, sure, but considering the alternative, I just don't know.

In so many parts of life, I'm decisive. When it comes to work, I can make important decisions in record time. I guess I'm just finding that decisions about my child are way different. Not that this should be all that surprising, but still. I just feel like I'm on my own, and that sucks. Plain and simple. I keep praying about it, and I kind of think God is just rolling his eyes, saying, "I'm giving you every possible sign I can!" She doesn't eat enough. She won't drink hardly anything, and she doesn't seem to care. I've made every excuse. She always seems to be just on the brink of some great improvement. We start with a new feeding therapist next week, the guru of our area, so I've been holding out for that. But truth is that even improvement won't be enough at this point. She's got so far to go. Maybe she won't need it for long, but she does need it.

So I guess it's just me... I'm the hold up. I think it's time to give up the filibuster and get on with it. Suppose I should call Dr. R and see what's next.