Thursday, August 16, 2012

Day 11 - packing

Today was a full day of 3 family meals!  Breakfast was a breeze - everyone can do cereal and milk, right?  Colleen spooned her own bites of pureed pears a bunch of times and then at lunch she had no trouble managing her own tube of go-gurt!  That makes eating my own meal a lot easier.  At dinner, Dave took a turn in the 'hot seat'.  It went pretty well, all things considered...we tried ordering a veggie burger for her and I think the ketchup was the only thing that saved it!  It was supposed to come up w/cheese on it but I guess they forgot.  I am feeling pretty confident that we can do this at home.  Much more confident than I was 2 weeks ago, or even 1 week ago, obviously.  The part that will be missing of course is that so far all of Colleen's meals have been prepared.  And not by me!  There will be no magic cafeteria fairies who deliver!  We have been told of a recipe book that will be given to us upon discharge tomorrow.  I'm still researching a new powerful blender...I have expensive tastes in blenders! WHO KNEW??  Ours works well - the smoothies we make are proof of that!  But if I am going to be using it that much more and for a lot more variety of foods, I think it might be time to look at others.  I sort of started that a while ago when I wanted to get her off the 'toddler formula' drink.  I researched home blended foods for the G tube and 'everyone' advised readers to invest in an industrial blender.  We'll see...there are a lot of blenders between our Oster and the top of the line!  I know it would be a worthy investment, no matter what we get.  And for now I know I can do a lot of soups and baby food type stuff to start, not to mention yogurts and those squeezable foods for kids that are really popular right now.  Anyway - I didn't mean to write about blenders tonight!  I really wanted to talk about GOING HOME TOMORROW!!  Seriously, I hadn't given much thought to life w/o tube feedings and now that it's here...would you believe that I'm speechless?  Yeah, I didn't think so!  Being here and seeing all these other kids who have been/will be in the hospital much longer, really puts things into perspective.  These 2 weeks were so hard, but we get to go home!  The emotional aspects we were dealing w/seemed like they would never end, but now there is some hope in my heart for not just the future, but the near future.  Please pray for the families here who might feel like they don't have much hope for their kids outside of this hospital.  There are so many things I feel like I need prayer for when we go home - that I can keep my cool when it seems like we hit another wall, that I can keep up w/preparing the meals, that Colleen will transition to eating at school well, just that we can keep this going! - but that is nothing compared to the prayers of these families, I am sure of it...alright, I didn't mean to turn this into a sad post either...can you tell I am a bit emotional tonight?  I am so excited to get out of here!  I am scared too though.  I am feeling confident and a bit worried at the same time - is that possible?  I feel READY though.  I sort of wish Colleen could explain her feelings.  I know she wants to go home for the 'normal' part of it all.  Me too.  =)

Wednesday, August 15, 2012

Day 10! Prepare yourselves!

After reading the last blog post, you are not going to believe me...

That was Saturday.  You are not going to believe what happened on Sunday....

Colleen was a whole new kid.  She leaned in for bites, swallowed fast, cleared her mouth well, slammed back the milk and finished foods!  She beat the timer too!!  And then she repeated that feat for the rest of the day...and at snack too!!  Now it's Wednesday and we haven't looked back.  No I'm not saying that things are perfect, but it really seems like we've gotten past a few issues.  I haven't written anything b/c Dave and the kids have been around and we've been enjoying time together =)  Colleen has not had a tube feeding since late last Tuesday night!  I never thought I would see the we're talking about what to pack for school lunches!!!
So the 'formula' of sorts that has been working for us?  (I need to write it so I don't forget!)  Start w/milk, move to 2 smooth foods and then a crunchy chewable food.  Milk gets interspersed in there...we try to finish 5 bites of all foods and finish the milk and at least 1 food before 30 minutes.  Snack is about 6 oz of milk and a crunchy food.  Calorie counts should be over 1100 and I can't remember how many ounces of milk...over 20.  Maybe 26-28?  I know it's going to be in the discharge papers!  Which, btw, is going to be FRIDAY!!!  LESS THAN 2 DAYS!!!  I want to write more but I am tired and tomorrow is another day.  Tonight was our first meal practicing the new strategies w/everyone around the table.  I am still figuring out how to help feed Colleen, keep the kids on task eating and talk to everyone all while eating myself!  It was a good meal, Colleen was almost 100% as successful w/everyone as she had been by herself, but it was a bit much for me.  It reminded me of the days when we had a baby - feeding baby food out of one hand and our own fork in the other.  I know I have accidentally eaten a few bites of baby food over the years b/c I got the utensils/hands mixed up!!  Although, back in the day we didn't have as many kids around the table!  So yeah, I am learning a lot about how to manage the meals.  I'm grateful we have 5 more to practice!
Thank you everyone for praying for Colleen and the rest of us.  I know there is no way we could have done this alone!!

Sunday, August 12, 2012

Day 6 hit like a ton of bricks

Wow, yesterday was the toughest day by far!  Dave was hoping to get a chance to feed Colleen, but they thought it best that Colleen and I push through and keep working on her challenging me.  And boy did she!  Earlier in the week, she seemed pretty compliant and showed some resistance but yesterday was...I don't even know a word for it!  She clearly is capable of slamming a good ounce or two of milk, but even from the first sip at dinner, she was looking for ways to get out of it.  There were tears, whimpers, lots of holding food/drink in her mouth, etc...she would get so worked up, it became difficult for her to hold that stuff in her mouth and she would get all this snot going, she'd try to cough w/o gagging, she'd get all messy...Through the whole thing I am supposed to remain neutral.  Easy?  Not on your life!  *in my head*  Look at the floor!  Make a disappointed face!  What does that look like anyway?  ARG  What is she doing?!  Why doesn't she get this?  Doesn't she want it to be over?  Just swallow already!!  and on and on and on....
Everyone kept reminding me that I did such a good job and it wasn't anything to do w/me, that I was fighting against some demons or dragons from her past and we don't even know what exactly we are all fighting!  I know these things in my head and it makes my heart hurt.  This is another example of where I think about how much easier my life would be if it was normal like everyone else...but then I remind myself that I don't want a normal life anyway!!  This is better than normal even if it is hard.  It still makes me pretty exhausted though...I told Dave I felt a little like a person who gets so used to being cooped up that they just don't want to go out anymore.  Yeah, I think I could use a good walk outside around the huge medical campus today.  
All of that being said, we are very blessed to be here.  I've seen my girl eat and drink more in one sitting than ever before.  I've learned a lot and everyone has been kind and attentive to whatever we've needed.  Last night I got the best sleep so far b/c Dave brought me one of those egg shell pads.  You know what I mean, right?  It looks like an egg carton, an inch thick or so of foam, the size of a mattress.    The other nights weren't too bad...well, they weren't good.  The couch pulls out so that there are 2 halves.  Each half is made up of 3 parts.  The back rest part, the seat part and then this bottom part comes out like a trundle and you are able to lift it up so it's the same height as the other 2 parts.  So yeah, a crack down the center and 2 cracks on each half the other way.  If you ever have to sleep on one of those, I highly recommend an egg carton pad or whatever you call it.  I was super tired yesterday too, so I am willing to bet that had something to do w/it as well!  Either way, I know I didn't feel the cracks last night!  =)  I will definitely not forget to put that on again, like I did the first night Dave brought it.  
Another thing I've decided is that when I build my dream house, I am totally going to put a huge north/northwest facing frosted window in my bathroom!  This one is almost ceiling to knees, all the way across the room.  It's a lot of natural light!  (The only bad thing about that is that I can see all the gray hairs!!!  Oh well, I'm sure I've 'earned' a few new ones this week...not like I'm going to do anything about them anyway!)  Call me weird, but I think the regular part of the room is not quite as inviting as warm and fuzzy as the bathroom!!  Now you know I'm a little loopy after being here a week - I'm talking about the bathroom!!!  
As always, please keep us in your prayers...don't forget those prayers of praise and thankfulness too!  We've been talking w/the docs more about school lunch strategy.  That was one of my big goals for coming here.  A small lunchable (this momma is going to try to make them on her own), a quarter of a sandwich, lots of enjoyable bite-sized finger foods...I'm thinking of bento boxes.  Anyone do those?  I need to find a good set of them, not too expensive...?  Suggestions welcomed!!  I look online and I get overwhelmed.  I really don't want anything w/BPA in it but it has to be something she can open easily herself (per Dave).  The stainless tiffins look good but I think they are too big.  I don't know...I've got time and until I actually order something I can always use bags and little tupperware type things.  Environment be darned, my kid needs to eat =)  
Six days down, six days left....

Thursday, August 9, 2012

Day 4 Student Driver!

I post huge statuses on that social media site...but I always want to write even more!  Today's post - 

The day started out on a low note, but!!! Back from the brink =) Bean earned only 3 out of 5 stickers for slow eating at breakfast but ate a great lunch. I got to sit in on dinner and 'do the routine' w/coaching. She not only got all 5 stickers but she ate BONUS bites of the most difficult food - hot dog. AND - we learned that she met her food calorie goal yesterday!!! We already knew about 
meeting the liquid goal but the food goal was a bonus. Today she is on track for the liquid goal, might even exceed it by a few mLs and I think she is close to the food calorie goal. (Won't know until tomorrow.) WAHOOO!!!!! I must say, I AM IMPRESSED. I plan to write more on the blog tonight b/c what I just said was only half of our day =) We've been busy!

For some reason, when given the choice at breakfast of which food to finish, Colleen picked the most chewable/most difficult food.  She soldiered her way through about 3 bites of pancakes before the doctor advised her to change her plan.  Together they agreed that the smoothest food would be good to go back to.  However, by that point it was too late...she didn't finish a food nor did she finish her milk.  (In case I haven't explained it well enough - usually the tray contains a chewable and 2 smooth foods, one that is like a pureed veggie or fruit w/some texture to it and then a totally smooth food.  Her goal is to eat 5 bites of each thing, drink all the milk and finish one food.)  She didn't have too much anxiety at all at the beginning of the meal, so I was sort of shocked that she didn't finish stuff and she just plain ran out of time!  But why did she pick the pancake??  We can make guesses but it doesn't really matter...
Lunch was outstanding and she was awarded all of her stickers!  Dinner - she was very excited to have me serve her and be in the room w/her!  The doctor stayed in the room to coach me.  I did really well presenting the spoon to motivate her to swallow and get ready for the next bite.  I need to work on offering specific praise (Good swallowing!  I like how fast you chewed that! and not just Nice work!  Good job!) and I also need to work on staying silent when she starts to goof around.  She tried to argue w/me about something or negotiate something and my mouth opened to respond but I needed to be reminded that no response is the best response.  I was extremely proud of Colleen at dinner b/c she earned all of her stickers w/5 minutes to spare!  Then she chose bonus bites of the chewable food to earn an extra sticker!  She ate the 3 bites of hot dog rather quickly and we danced in the side room!!  Once again she emptied two 12 oz cups of water during the course of the day, in addition to almost 24 oz of milk, which means this is the 2nd day in a row that she will receive NO TUBE FEEDING OF ANY KIND!!!!  
On to the other stuff...this afternoon the hospital hosted a 'state fair' of their own.  The Fairest of the Fair was in attendance, there were jugglers, clowns, games run by local arena pro football players, enlisted Navy men and women of various ranks, dogs dressed/dyed to look like farm animals, etc...Popcorn, corn dogs, corn on the cob and cream puffs were offered, blue ribbons and goodie bags for all!  "What's a goodie?  And why they give us a bag of it?"  My sweet girl was a little put off by the crowds so we didn't stay too long.  Afterwards the Fairest of the Fair made some rounds, visited our room and autographed a picture for us!    I have many pictures but I will probably share them later...if you think that's all we packed into this day, you'd be wrong friends!  This morning we saw cousins who are also here for a few minutes, we colored in the art room, we had dinner w/family from LaCrosse (got to meet the newest member of our family!) and mailed some letters!  Tonight Moses and Dave are staying at a campground nearby and we will hopefully see them for breakfast and the rest of the day tomorrow.  We are so very blessed to be here and to be making tons of progress, but not only that, we are blessed by many people who are praying and doing things for Dave while I am gone.  We feel so loved by God, by family and friends...thank you!!

Wednesday, August 8, 2012

DAY THREE - Astounding me!

And you thought yesterday was a good day....

A quick summary of the day from my status...

HIT LIKE AND JOIN ME IN A SHOUT OF PRAISE: My sweet girl not only completed all that was asked of her food-wise today, but she also met her fluid goal for the day!!!! NO TUBE FEEDING OF ANY KIND TODAY!!!! There is no line in the baby book for this, but you better believe I'm making a whole page for it!!! Not only that, but we were able to receive a 'pass' to go out of the hospital with Dave and Mo for 2+ hours (we went to the WI State Fair - it was UW Madison day - we got to hear the band!), but we also were able to see cousins who are in the hospital overnight. GOD IS GOOD!!! Prayers are being answered and we are blessed!!! =D There aren't enough exclamation marks to relay how great this day was!!! =D

Yes, there were still tears and struggles, but it was awesome!  Colleen has really shown us that she is capable of many things.  The speech therapist came up to check on some mechanical things (Colleen is still not clearing very well) and she felt we should wait on a swallow study.'s only Weds and we're making good progress!  The other best part was that Dave was able to meet some doctors, watch Colleen eat lunch and go through a bit of what I have been doing so far.  Well, not the sleeping in the hospital part, but...

Some things I have learned so far - count while Colleen drinks.  She tries to beat the count.  It's so silly and I'm sure I've done it a few times before but I just don't do it consistently.  Also, the sticker chart is awesome!  Yes, I could have guessed that before, but seeing how they set up the specific goals is helpful.  One thing I have not been doing is making Colleen try the harder to chew/swallow foods.  I basically have given up on them and just been satisfied w/whatever she was willing to do.  Here, we start w/a difficult food and move our way down to the smoothest foods.  Again, I could have thought of that but this 'training'/therapy is for me too!  I need the suggestions and encouragement and reminders and the strategies to keep going!  

So on that note...I will say that this little girl has astounded me in new ways this week.  I've seen her do some hard stuff, all while physically exhibiting her anxiety.  I couldn't jump in there and help and she knew it.  She has been though so much but she keeps going.  I shared an inspirational poster thing from a f.b. friend's wall - it said, "I may not be there yet, but I'm closer than yesterday!"  That, my friends, is a perfect summary for the day!

Tuesday, August 7, 2012

Day Two

Feeling really tired so I'm keeping it short.  Today we started a new thing at lunch - a sticker chart.  One sticker for five bites of a food, one sticker for milk, one sticker for finishing a food.  She did that in both lunch and dinner and got to pick a prize from the drawer!  She was very very very happy about that!  She picked a bouncy ball - we've played w/it a lot already.  She's beginning to ask questions about when the next meal is coming it hunger?  I don't know.  But she also started crying when the dr appeared to walk us down to the room for eating.  Sometimes I ask myself how she can dread something that we've only done 5 times so far?  And it's not like anything bad happens during these sessions.  I watch them all and make bets w/myself about which foods will give her the most trouble.  Her long time nemesis has been pudding and it reared it's head today.  However, she did make quick work of the jello, proving me so wrong!  I'm glad I was wrong =)  It sounds like tomorrow the therapists are coming to watch at some point.  Colleen still has a lot of trouble clearing her mouth and she still holds things for a long time before swallowing.  We have had so many tests done in the past to see if mechanically there was something preventing her from eating well, but everything came up negative.  Or positive, depending on how you look at it!  So it will be interesting to see what they say.  Right now I am watching the movie Rudy, which feels fitting.  The kid was pretty small and very determined to play on the Notre Dame football team.  I pray my sweet girl is like him, giving it everything she's got every day so she can meet her goals!

Monday, August 6, 2012

ps for Day One of Feeding Therapy

I wanted to direct everyone to 2 links I found to be helpful...
The Feeding Tube Awareness Foundation - feel free to buy me a sweatshirt from them!  Ladies small or medium!  (Only half kidding - aren't they cute?!  Soon my tubie may not be a tubie but I would be honored to show my love for her w/a sweatshirt.  Besides, it might get people talking and being aware and supportive of others who have a tube!)  They also have a page if you want to pose questions or look for support.
The Top 10 Myths of Mealtime in America - some good info to help people who are not in 'the know' about feeding problems in kids.  Or as I look at it, information to help me respond appropriately when people say (what I perceive to be) insensitive and ignorant things.  Sometimes I can be really defensive when people make comments and my mouth gets ahead of my manners.  This is a good resource.

Day One Done

I have no idea what I have mentioned on this blog so far about Colleen's eating struggles...if you know her in real life, you probably already know that she has a McKey button in her belly for tube feedings of high calorie formula.  The 'why' is not an easy answer, but if you want to know, just ask.  The reason I am bringing this up today is b/c we started the comprehensive inpatient feeding therapy at the children's hospital.  Day one is in the books - and it's been an interesting one!  I struggle w/how much to share for various reasons - this is Bean's story to tell some day, you might not understand the background or medical stuff (I live it and don't always understand it!), I don't want to upset/worry others, etc...but today I was thinking about the stuff that makes me feel 'not normal' or sets me apart from the other parents I know and I felt a little frustrated.  Sometimes it really stinks that other people don't get this and don't share in this.  I'm not saying I want all of your kids to have the same problems as mine just so we can be friends, of course, but it's hard to explain things to people and then after a while I can't take the pity looks or the stories of how their kids eat picky too or whatever.  Ok, I'm being really blunt here and I don't mean to offend you if you are one of the people who has said those things to me.  But it's different.  Be honest, most of you can't relate to going to feeding therapies one bit.  And that's ok!  It really is!  We can still be friends =)  I guess what I'm trying to say is that I'm going to write a little bit about it in hopes that it will make it easier to talk about for all of us.  Also, I hope that people who are going through this will be encouraged.  Not that my our story is all that inspirational or anything, but that maybe others can find a nugget of comfort in shared experiences.
So here goes.  My girl is 5.  She is not a baby born w/some medical need for a feeding tube.  She is a preschooler who still gets the majority of her calories from a formulated liquid.  I never expected to be tube feeding a 5yo.  (Side note - these days we are down to only 1 can through the tube, which my husband so lovingly administers in the dark while Colleen sleeps.  He is a true servant to both her and me!)  We adopted Colleen and there were some struggles involving food in her past.  She came to us w/a lot of emotions about food.  She had an nG tube in her nose at first and now has a McKey button.  We've been to this hospital for lots of therapy appointments along the way...3 years later we are still working on it.  Two years ago we were presented w/the option of an inpatient treatment but we had already bought plane tickets for a big trip.  This year - we had no plans officially set.  We're ready!  Kindergarden is coming and that means all day, including lunch w/no other family members present to coach her through it.  This scares me...I know mommas have a hard time when their babies go off to all day school and I know it's normal.  But we have a different normal at our house =)  In my mind I just couldn't see this tiny girl lining up to go to the cafeteria, sitting down at one of many tables with 99 other kids, eating or drinking anything in less than 15 minutes and then shoving the rest of it back in her lunch box to go play.  I just couldn't see how she would eat one bite of anything, let alone drink her formulated drink!  She's starting to get to that age where kids ask her questions, she notices she is different and she honestly doesn't know what to say to answer them!  After swim class, once some kid asked why she had 'that thing' in her belly and she said, "That's why I have a belly button."  The kid was pretty bewildered...yeah!  I want to teach her to say something like she is an alien or she shoots fire out of it or something, but I'm not sure the other moms would appreciate it!  Look, sometimes we have to make jokes, ok?  =)
Since Dave was not teaching summer school this year, it seemed like a perfect time to enter the comprehensive feeding therapy.  Were we bummed to spend 2 weeks apart, am I excited to sleep over in the hospital room, does Dave feel ok about missing out on prime time vacations?  Yes, no and no, but here we are - putting all our own selfish thoughts aside to focus on how exciting it is to see our daughter progress and how grateful we are to be so close to a place where we can have help.  Are we worthy of your admiration for that, have we stopped complaining and worrying about it, are we making the best of it?  No, mostly but not entirely and yes.
So...feeding was...sort of like ground zero.  We were instructed to give Colleen only half the amount of drink we usually give at breakfast.  Lunch was awesome - my rock star daughter almost completed a container of yogurt!  Not only that, she drank a whole can, AND she ate other stuff too!!!  The psych dr kept saying, "Holy Cats!"  It was pretty impressive.  She ate mac and cheese, peaches, goldfish crackers...(The dr asked what her favorite food was.  "Mac and cheese....and noodles!")  Then dinner was served a touch earlier than we serve it at home.  I could have guessed what the outcome was going to be like...when she heard the dr was coming soon for dinner, Colleen started telling me she wasn't hungry and didn't want to go.  We went and she started out pretty good...but a few minutes in, got weepy and started to really struggle.  The last 10 minutes were rough.  She did eat part of a chicken strip, some pear sauce, some mashed potatoes and some ice cream.  She made sure to tell that dr that she didn't like ice cream.  (Maybe if they would have added some nerds candy...?  She loves that stuff in ice cream!  BLECH!!  Whatever works for you baby girl...)  Tonight we are not tube feeding her like we would normally at home.  We shall see what tomorrow's breakfast will be like!  I'm hoping she'll be hungry!
As always, we would appreciate your prayers for us as we put one foot in front of the other in this journey.  Tomorrow is a new day, another chance to succeed =)  I'm no expert but if you have questions about feeding therapy or just want to share experiences, feel free to leave a comment...