Week 2, Day 2

So, we talked with the dietitian at the clinic today and she wants us to start making changes to the actual blend we are making for Sunshines tube feedings.  Currently, her blend consists of: Pediasure, Baby food fruits/veggies, Baby food sweet potato, Baby food meat, Infant oatmeal, olive oil, sugar, kefir, 1/4 avocado and water.  Looking at how much Sunshine has been able to take by mouth, she wants us to take the Pediasure and all baby food (except the meat) out of the blend!  We thought, what does that leave us with?  Hah.  We may have to add a little water to make it thin enough to go through her tube, but our quantitiy of blend is going to be significantly less!  The current blend makes about 29oz, but we'll be taking out about 20 oz of that!  Wow.  Again, I would call this tangible progress!

This morning, Sunshine did great.  They gave her fruit cocktail blend (introduced yesterday afternoon) and newly introduced sweet potato.  She ate both with no problems.  She's also drinking more, occasionally sucking on the straw herself.  They've started giving her more bites/drinks between each "TV watching reward" and that means she's processing the food better/faster and getting more used to the expectations.  It also means more time of her 25 minute session is spent eating and less is spent watching her TV show.

They also had her try chewing this morning.  We are told that is a skill that takes longer to develop.  They put a small piece of nutrigrain bar in some cloth mesh and had her chew on it.  Then they could see how well she'd chewed up the piece.  They were complete mush everytime she did it and they said she did really well with it.

Chewing practice

I am so proud of my girl I feel like telling everyone how well she's doing.

"Smile!"
Morning selfie.  Not sure why she looks so yellow though.  Funny light, I guess.

This morning she has had a total of 6oz of food and 3.5oz of Pediasure.  What a good start!  She could be gearing up to beat yesterday's record.  We'll see.

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Sunshine's afternoon went great also.  In her 3rd session she drank 2.3oz of Pediasure and ate 3.4oz of Yams and Applesauce.  At her 4th session she drank 2.2 oz of Pediasure and ate 1.9oz of Peaches and Carrots (newly introduced).  The 4th session was intentionally smaller amounts because it was "snack time" instead of a "meal time".

After consulting with the dietitian about her oral intake and considering what we'd already given her via tube throughout the day (16oz) she said she'd gotten enough calories for the day and we didn't have to give her anything additional later in the evening.  It sounds strange to say we let her "skip supper" but when you've been eating all day, it isn't that big a deal.  (And she suggested that she may do really well in the morning because she'll feel hungry.)  So today, she got a total of 8oz of Pediasure and 11.4oz of food, and we eliminated 13oz of her tube feedings.

So we did a Target run and decided to go out for supper ourselves.   It was a nice break to be out of the Ronald McDonald House and clinic for a while.

Look at the numbers!

Sometimes numbers speak louder than words.  Here are some important numbers we've been encouraged by:

Weight Gain:
August 12 -- 22 lbs 2 oz
August 15 -- 22 lbs 7 oz
August 18 -- 22 lbs 15 oz

Oral Intake:
Tuesday, August 12 (baseline) < 1oz food or drink,  
gave 29 oz tube feed

Wed - Thurs -- appx 3-5 oz total (puree and pediasure),  
gave 29 oz tube feed

Friday, August 15 -- 8 oz total (puree and pediasure),  
eliminated 2 oz of tube feed

Saturday, August 16 -- 8 oz total (puree and pediasure),  
eliminated 2 oz of tube feed

Sunday, August 17 -- 7 oz total (puree and pediasure),  
eliminated 1 oz of tube feed

Monday, August 18 -- 20 oz total (11 oz puree, 9 oz pediasure),
eliminated 9 oz of tube feed

I asked for prayer for tangible progress this week and that prayer is being answered.  We have 9 oz of blended food that we did not have to give her today and can save to use tomorrow.  That is huge.  I am so thankful and amazed at today's progress.

 Tuesday, August 19 -- 19.5 oz total (11.5oz puree, 8 oz pediasure) --this was only in 4 sessions! eliminated 13 oz of tube feed

Week 2, Day 1

Woohoo!  Beginning our second week with a bang.
This morning at her first session Sunshine ate 1.9oz of pears and drank 1.9oz of Pediasure.  The dietitian said today we can do one-to-one replacement of whatever she drinks of the Pediasure because the calories are similar to her tube feeds.  So, since she got almost 2oz of Pediasure, I could cut out 2 oz of her tube feeding.

She did almost as well at her second session!  1.7oz of each.  So they said it was close enough I could cut out 2 oz again!  Yay!  And that time they introduced pureed peaches.  She did great with them so we may be introducing some other flavors soon.  And it's only the middle of the day and we've already replaced 4 oz of her tube feedings with oral intake.  Good Job, Sunshine!

All buckled into her Rifton chair and ready to eat!

Week 1, Weekend

So thankful for this weekend!  It has been  a good change of pace from the week.

Feeding-wise, our goal was to do two and if possible, three, structured therapy sessions with Sunshine each day.  I really wanted to try for three, and though it wasn't easy, we did it!  Yesterday she totaled 8oz and today she totaled 7oz!  Both great since it was just 3 feedings and I was doing all of it.  I'm hoping (expecting) to see more growth and improvement when we are back in therapy this week.  The nutritionist here said if we got over 6oz, we could start taking the equivalent away from her tube feedings.  So it felt good to be able to take a bit out of her tube feeds each day.  This week they plan to more intentionally adjust her tube feeds to work with her oral intake.

Our highlight on Saturday was having Sarah and Lucy come see us!  So much fun to catch up and just sit and talk for a couple hours.  Buttercup had a great time having an older girl to play with!

 

 

On Sunday we were able to visit a church recommended by one of the ladies at the clinic.  We enjoyed our time there.  It was a much bigger church than we're used to, but it was good to get out of the Ronald McDonald House and the girls enjoyed going to nursery/Sunday school.  The rest of the day, when we weren't doing feeding therapy, was spent reading books, playing games, and chatting with friends here at the House.

Sunshine chillin' after suppertime.

Week 1, Day 4

Here is our mailing address (because it's always great to get mail) here at the Ronald McDonald House:
Sophia Thiessen
3540 Washington Ave
Evansville, IN 47714

We started this week a little shell-shocked from the suddenness of our arrival here, stress of not feeling 100% and uncertain of what to expect from our time here.  Now that we've gotten through most of the first week, we've been able to ask more questions and get a feel for what are reasonable expectations for progress.

Some things we're understanding better:
- The goal of our time here is to wean Sunshine off her tube.  This happens slowly and we may not get her 100% off by the end of these three weeks.  She could be getting 25% or 50% of her calories by mouth and the rest via her tube.  And that is OK.

- One of the ways to more quickly wean her from the tube is by having her drink high-calorie drinks like Pediasure.  Given our previous experience with her constant vomiting and my general dislike of Pediasure after that, I am not thrilled with this prospect.  But I know it will not last forever and it is helping get her off her tube, which is good.

- Right now, she is still taking in very little at each session.  Her max so far is 3oz (1.9oz of Pediasure and 1.1oz of pureed pears) in one session of eating.  That took her about 27 minutes.  While they are trying to increase her in-take volume, they are more concerned about training her in how to eat well.  Taking good bites, dealing with the food in the correct way, and closing her lips around a small straw to suck (which is harder than a large straw but it's better for her to learn the hard way first) are all important skills to be able to eat more.  This is important.

So, while the progress feels slow, she is definitely building some strong habits that will help her down the road.

As we move into the weekend, we are supposed to give her "therapy" feeding sessions 2 or 3 times each day and have her sit with us and do her normal nibbling while we eat.  We can keep track of how much she gets at each feeding, but we don't need to take it out of her tube feedings yet.  That means we don't keep up with the same rigorous schedule and calculating in-take quite as carefully.  Also, she can handle a few extra ounces (and extra calories) because her weight is so low.  Next week we'll start looking at taking out some of her tube feeds depending on how much she is taking by mouth.

Week 1, Day 3

Today I successfully got Sunshine to sleep for her nap and managed to lay her down in the pack'n play!  So, I have time mid-day to sit down and write about today's progress.  So thankful for a few minutes of peace and quiet!

Last night, Sunshine still woke up for about an hour in the middle of the night.  Thankfully she was not crying all the time and inconsolable like she has been the past few nights.  She was just awake and didn't want to be in her bed.  She didn't seem to have a fever either.  And, I have seen the tip of a tooth poking through so I know teething is a lot (if not all) of what was causing her so much discomfort earlier in the week.  What unfortunate timing for a new tooth!

This morning, Sunshine has been doing well in her therapy sessions.  They are continuing to give her pediasure in the straw-bottle.  During her first session she sucked on it a little on her own (rather than the therapist squeezing a bit into her mouth), and drank about an ounce total during the session.  She also ate about an ounce of stage 1 applesauce.  During her second session, she wasn't quite as hungry (because we'd done her breakfast tube feeding between sessions) so her total amounts were a little less, but she still did very well.  She ate some stage 1 applesauce and some "Go Go squeeze" applesauce, which is just slightly grittier in texture and reacted about the same to both of them.  That's good!  This morning she has also been doing better at keeping her tongue in while taking her bites.  We'll see how she does this afternoon when she tends to be a little sleepier after too short of a nap.  I commented to one of the therapists how I have to be patient with myself and remind myself it's only the third day and she said considering that sometimes it takes kids a whole week to get used to the chair and surroundings, it's great that we've been able to try so many things already.

Buttercup enjoyed playing on the playground at the Ronald McDonald House this morning before school.

Week 1, Day 2

Today had some harder moments.  And moments where I think, "man, she isn't eating yet!" and then moments where I remind myself, "it's only the 2nd day.  We've got 12 more days of actual therapy, plus weekends.  That's 48 more sessions.  There's still plenty of time for progress.  Be patient."

Matt took Sunshine to her first session this morning while Buttercup and I stayed back and did school.  We set up at a large table in the play room and had a good time.  Therapy went well too.  They started with thickened water, and thickened apple juice and throughout the day progressed to stage 1 apple sauce and Pediasure.  Yay!  Progress!

Some of the struggles of the day:
Sunshine's having a hard time getting her mouth open the way they want her to in order to take her bites.  She isn't really sucking on the straw but likes to try to chew on it.  Her third session, right after a short nap time, was rough because she was so tired.  She'd napped less than an hour and was dazed through the whole session.  She got another catnap before her fourth session and did much better.  She isn't eating or drinking enough to eliminate any of her tube feedings yet.  We think her night-time fevers and periodic fussiness could be related to teething.  There is little we can do to help her, but at least we are less worried that she may be sick.

Tomorrow and Friday they may have Matt and I do some of the feeding during therapy so we can continue to give her practice over the weekend.  So far we have mostly been observing.  It will be good (and hard and scary) to be the one doing the feedings again.

Matt and Buttercup came with us to the last session and stayed in the play room at the clinic while Sunshine was doing her therapy.  Both girls had some time to play when therapy was done.

So, today, I'm trying to stay positive as progress is not as fast as I would like it to be.  I see more and more what a long road this is.