In love, but not with the plug.

We had a visit today from our nutritionist through NutriThrive and I am in love. I got more out of her hour long visit then I have gotten at the past 5 clinic visits. Mainly because we were in our own home and I had all the time I needed to remember the 3 Billion questions that are bouncing around in my head all day. She reviewed all of the foods we currently feed Ellie (including going over the ingredients on the label of everything) , did the same with all her vitamins and fish oil, gave suggestions for new foods and then showed me when looking at the ingredient list on foods what bad things to look out for.

News to me, when it comes to short gut:

1. Onions= BAD. Big producers of gas and hard to digest. Not a huge problem now but our goal is to reconnect and it will be a problem then. (Green Peppers fit this bill as well)
   
2. Difference between soluble fiber(good) and insoluble fiber(Bad). ie, the fact that Ellie likes to peel her beans before she eats them is a very good thing.
3. Beans are a big source of pectin, I thought it was all in apples. (pectin is very good for slowing small bowel transit time and apples are not Ellie's friend)
   
4. Onions produce more gas than beans.

The list goes on and on, but that is all I will force to you read. It was great and when we were done I wanted to give her a big hug and a kiss. The only bad thing was that Gib missed it. I know he also has questions bouncing around in his head and would have loved some answers too.

He is in VA this week for work so I am flying solo, with my wing man Karlene of course.

Below is Ellie singing Bushel and a Peck before bed. She usually sings this with her dad, a when I told her we were making a video for Daddy, this is what she wanted to do.

Ellie is doing well but not doing great with the plugging of her ostomy. Gib and I have been talking it over and I finally called Dr. Jennings today. He agrees with us that the plugging doesn't seem to be working, and that this doesn't look great for full reconnection of her intestines. He also agrees with us that there may be something mechanical that is not allowing all the food to go down her colon. This could be kinks or sharp bends in the colon right below the connection with small bowel.

So this means we start talking about the next step. Right now that step is meeting in person with Dr. Jennings and deciding how we can fix this. And most probably that fix will mean another surgery, I think that would make the grand total around 6, excluding CVL placements. I know, YUCK. This one would not be a full reconnection of her bowels, since she is giving signs (vomiting) that she cannot tolerate being fully reconnected. What we all want to avoid is the possibility of taking down the ostomy just to bring it back up in 6 months. So we will find a happy medium between Jejunostomy (where we are now) and fully reconnected.

Other than all that things are good. Our lives are about to be turned upside down for good reasons in a week. We are renovating our house. Gib and I started some of the demo this weekend and found evidence of past tenants that had been living under our kitchen floor(bigger than mice, we're thinking chipmunk). Luckily they were long gone, but it was still very, very gross. We are excited to start, and know that in about a week we will be ready for it to be over.

On other fronts, I know there are a ton of new short gut families that are out there and I would love to list them on our blog. If you are a reader, have a blog and would like us to list it please email me. (see link on the top of the column to the right)

Well that is about it for updates for now. I leave you with Ellie's message to her father.

Feeding Gut Girl

What happens when you ask Ellie to smile and open her eyes at the same time....

Our ongoing challenge is to move Ellie forward towards eating like a typical two year old and getting away from the IV and tube feeds as much as we can. Tube feeds have their purpose but they aren't our goal for Ellie so we keep looking forward toward real food for her. To get from point A to an oral feeding kid takes a bit of work.

We have heard from other parents asking about what she eats and how so here is the rundown of the day for Ellie's feeding. All of this should come with the caveat that we 'cheat' a bit because of her ostomy- if we feed her something that gives her gas, or diarrhea, its effect is minimized because the ostomy is a great escape valve for both of these things. This will all change significantly when she is reconnected and has to deal with gas and other side effects of a varied diet.

Her feeding day is quite regimented and begins with her coming off the evening IV around 8 in the morning. The overnight combination of IV and g-tube feeding at 40 ml/keep her happy overnight and she still sleeps between 10 and 12 hours each night. Who says tube feeds are all bad?

As soon as she comes off the IV we give her a glycerin suppository to help her poop which usually works like magic. We'd like her to poop on her own but it just doesn't happen so most mornings we 'clear the decks' as soon as we can and open up room for more food. If we don't do this, we can be sure that her ostomy output will be increased for the day- if there isnt anywhere for the food to go it goes out the ostomy along with a lot of fluid. Remarkably her poops have good consistency, something that isn't all that common for kids with short bowel.

Poop Dance!!
(pay no attention to the mess, Abby has her knee 'scoped on Monday and we are still in recovery mode)

With a path cleared for food we wait and by 9 or 9:30 her blood sugar has come down from the IV to make her hungry for breakfast. This hunger drive makes it a lot easier to feed her and keeps meals fun instead of a battle. Breakfast is usually some kind of eggs (scrambled, hard-boiled, or fried and mostly whites) a slice or two of avocado and maybe a slice of ham along with her first cup of elecare for the day, about 100ml (3+ ounces). We don't tell her how foul it is and she keeps guzzling it, a fair arrangement.

Around 10 she comes off her G-tube pump. Since midnight she will have gotten about 3-400 ml of elecare through the tube which brings her to 4-500 ml for the day so far. Now we have a free kid until bed time.

'Ellie free. No milk bag!'

At 11 she gets another 100 ml of elecare. 5-600 for the day.

between 12 and 1 it is time for lunch. Lunch means some cold chicken, ham or turkey, some cooked vegetables like peas, broccoli, green beans, or asparagus and some plain noodles or noodles cooked in broth. She also likes soup and will drink broth, which the nutritionists tell us is great for her. And another 100 ml of elecare. 6-700 for the day.

Mmm. Double fisted Broth.

Nap time runs from 2 or so until 4 and ends with a second round of glycerin. Another poop around 4 and we are ready for a snack or third meal of the day along with another dose of elecare. 7-800 ml.

Dinner is a repeat of lunch. Meat, noodles, vegetables, and a final round of elecare that brings us up to around 900 ml for the day. Usually she a version of whatever we are eating, but if it isn't an Ellie friendly meal, then she eats her own food. And these days a bit or dessert- a couple of berries or a shared all fruit popsicle.

What's you name little girl?

Then it is off to do the TPN routine, hook Ellie up to her g-tube pump and TPN by 8. After a round of stories she is usually asleep by 8:30.

Then we reset pumps at midnight, add up totals for the day and other than changing a very wet diaper at 4 AM because of the huge volume of TPN that it our day until we start it all over again tomorrow.

All hooked up and ready for bed

All told she will have had around 1100 ml of elecare, three real sit down meals, one heavy snack and two poops, with the associated poop dances to celebrate each one:

This schedule seems like it might take the fun out of the day but really we manage to have lots of fun in between all of these pit stops and the periodic feedings, dresisng and ostomy changes don't really get in the way of things. She is so good at being the patient these days that they are remarkably quick and we get on out way to having fun:

Our version of Penicillin?

Friday morning we had what now seems like a fortunate error (at the time, it was an 'oh, shit!' moment)

Ellie has been on an enteral (formula) pump for about 20 hours a day for the last six months, working her way up to getting about 40 cc's (about 1 1/3 ounces) of formula every hour. This is a big step for the girl that used to tolerate only 1-2 cc's an hour. Each night we have taken her off the pump from 4 to 8 to give her a break from the backpack, give us some time with a 'free' girl, and also try and build her appetite for dinner each night. It worked well and the trickle of food was good for her bowel.

At our clinic appointment on Thursday the doctors suggested a slow transition to more time off the pump and more solid foods to complement her formula total but suggested that we stop increasing her pumped formula because tube feeds isn't the end goal for her.


In the confusion of a clinic visit on Thursday we forgot to plug Ellie's pump in and at breakfast on Friday the battery died. This forced us to give her Elecare by mouth for a few hours that morning while the pump charged. At noon when it was time hook her back up to the pump, we noticed a very interesting thing: her ostomy was behaving very well for us and she had a great appetite for lunch, which is usually a hit or miss meal. Since we were on pace to get a respectable daily total of formula into her for the day, we made the decision to stick with this approach for the day and see where it went. In the past big amounts of formula have flushed through her so fast that they weren't worth anything, but this time around, for some reason they seemed to be working.

The end results were great. She took all of her formula for the day, had a good ostomy numbers for the day and ate four good meals (we have added a 4th meal between lunch and dinner).we hooked up her enteral pump at 8 with her TPN for the overnight infusion and we had a breakthrough on our hands- a orally feeding girl who only had the pump at night!

I guess good things happen by accident sometimes.

Since Friday went so well we gave it a shot on Saturday as we went to zoo in Boston. We simply gave her cups of formula every few hours instead of letting the pump work.

Ellie loves sippy cups and likes them even more with straws. She gulped her stinky Elecare and we were in business.



This change was more dramatic for Abby and I than Ellie. It is a strange thing that is hard to describe but something that we both noticed during our trip- we suddenly had a kid who looked 'typical'-without tubes. We have gone from having a kid that used to get comments like, 'Oh my. That child is so sick that she needs tubes!' (no kidding) and now we don't have anything more than a lump for her ostomy.


It was/is sort of like losing your Sick Kid Club membership. With Ellie wearing abackpack with the scary white tube it automatically made Ellie one of the 'sickest' kids in the place which made is sorts of kindred spirits with any parent that had kids that were 'atypical'. All of a sudden we had a bubbly little girl running through the zoo. For the first time in a long time, at first glance, she had absolutely nothing in common with other kids with medical issues.

At one point, we emptied an ostomy out in the open (as we did in the Boston Public Garden this summer) because there wasn't a bathroom nearby as we normally do. Abby and I agreed that a little part of us wanted to get our membership back.

We kept going with this approach through the day today to see if we were seeing a new trend or a fluke but things are still moving in the right direction. Some things have popped up that we have noticed but overall it is a great change.

For example, Ellie gets truly hungry for the first time in her life now and we can see her energy level decrease when she needs formula and increase with a fresh dose of Elecare. we have also noticed an increase in her appetite through the day which is great since solid food seems to do great things for her bowel and poops.

And a two hump camel makes a two-hump poop....

Her dinner was so good tonight that we all shared a Popsicle:

So much for the dislike of sweet things. I guess this is what it is like to have a typical two year old, huh?

So onward we go with the experiment. We know that this may be a passing thing and it could all go away tomorrow but for now this progress is great.

I'll have to forget things more often. Just nothing to do with her TPN or Central Line. Those are still terrifying enough to keep us vigilant and on script. No ad libbing with sterile techniques.....

20 Calories per Ounce

This is the calorie level that we were at in May of last year. We then increased to 25 cal then a few months later we went to 30 cal. She seemed to tolerate the 25 cal, but never really did that well at 30 cal. We had about 4 months of high output that we tried to blame on everything else. But then this February we decreased back to 25 cal and she started to do better. This takes us to this May, and our hospitalization for a GI bug. We were discharged on 20 cal with instructions to increase the calories over the next few weeks.

We never did increase. Ellie’s output was lower than we had seen in half a year, her urine production went way up, we were able to double the rate on her enteral pump and she started to have a real interest in more solid food. We knew she was doing well but we were sure we were going to get our hands slapped at clinic for not increasing.

But, they were so excited by her progress they said don’t change a thing. Our nutritionist said that because Ellie is getting less calories from her formula her body is now making the effort to get what it needs from her solid food. Typical kids move from formula/breast milk to whole milk (18 calories per ounce) at the same time they start to really eat larger amounts of solid food.

This seems to be what Ellie is doing. So now Gib and I have been desperately trying to figure out what and how much a typical child should eat. What seems to work for Ellie is a diet centered around protein and vegetables. She also gets a small amount of carbs and fruit. The only fruit she gets is small amounts of the high fiber fruits and only fresh; bananas, blue berries, blackberries, and her favorite.. strawberries. The only thing we don’t give her much of is dairy; she still does not tolerate it very well. But, snacks are always a struggle; we are always searching for good snacks. If anyone has a good ideas please let us know.

We are very excited by her progress but, almost everyday we want to kick ourselves for not trying this earlier. It is really hard to look back at everything we have had to go through over the past year+, and wonder what we could have avoided by decreasing her calories sooner or by never increasing in the first place.

Live and learn I guess, right? Right?

It is blue berry season here, so here are some shots of our last two trips to the patch.

Ellie and one of the many blue berries she ate that day.

Ellie and Daddy checking out the apples on the way to the patch.

Ellie getting a piggy back ride back to the car.

The day Gib put Gus on Elecare

We had another fun filled weekend with Gut Girl with only minor technical difficulties.

This morning Ellie and I went with Abby to watch Abby play soccer in the women's league. We left Abby at the game 30 minutes before it started and Ellie and I went to coffee and donuts before the game started. There is just something about going to Dunkin' Donuts with your baby on a Sunday morning that made me feel really good. Maybe it was Ellie snuggling in to be shy from the woman behind me or maybe it was the fact that I was finally there with all of the other families getting crappy breakfast.

Whatever it was it was very nice. It was even better to wheel Gut Girl and the wonder dog across the field to watch the games that I watched with just Gus last summer. Letting Abby show Ellie off to the women on her team who had only heard about her problems over the last year was very cool, too.

Ellie's new feeding strategy is working well and today we added some very well blended Dad-made oatmeal to the mix of high fiber fruits and cereals. So far things have worked very well for her with ostomy outputs (liquid into the bag) decreasing and the amount of food that travels through her colon increasing. This gets us more traditional poops and the occasional 'ass-polsion' of poop down the leg and in the bed.

Just like regular parents.

Today's minor technicalities led us to our first ever change of a g-tube without a nurse to help. A g-tube is an ingenious little device. A $1400 ingenious device, but still ingenious. ah, Blue Cross....

It is a silicone tube with a donut shaped balloon built around it. The tube goes into the hole in Ellie's stomach and the balloon gets inflated with a syringe full of water to hold it in and seal it against the inside of her stomach.

Empty

Inflated (food goes through the tube in the middle of the balloon)

When it gets old after a month, the balloon doesn't hold water and the balloon won't seal, which lets stomach fluid come out the hole and run down her belly. Besides letting stomach touch her her tender skin, the fluid makes her ostomy bag fall off.

Today we replaced our third ostomy in three days and knew we had to replace the g-tube. This was nerve wracking for us because we hadn't done it without a nurse but it was surprisingly simple. Deflate the old one, pull it out , pop the new one in, hold it in place and re-inflate with clean water.

It worked just that easily. The old one, besides being gross and smelly from living in Gut Girl's belly, was leaky and wouldn't keep a seal. We hope the new one works better.

The other technicality came when I decided to make Elecare formula to fill Ellie's pump this afternoon. Just like very evening, I added the powder to the pop top canister to make 20 ounces of formula and shook it. In our living room as I watched the Red Sox.

Vigorously.

Blammo!

The top opened and the formula went everywhere. I mean everywhere. I went for distance and got it on the floor, the couch, the lamp, the wall, the table, the dog, the laundry and the ceiling. It looked like a very sticky Jackson Pollock in white. Fortunately, Labradors like sugary stuff and Gus helped me out by cleaning up most of the mess. We will see how well his GI tract likes elemental formula. He still has Elecare crusted on his fur.

I guess we can file this under regular dad stuff, but it was funny anyway. Even for Abby who hates sticky formula and was well within her rights to give me hell for being so stupid. She didn't and laughed harder than I did.

Lesson learned. Make formula in the kitchen.