Nutrition for Short Gut

We have struggled with Ellie's nutrition for a while and found that there were very few resources out there to help. It is a balancing act of getting her to eat and gettine her off of TPN,...good diet=less TPN.

We have a good nutritionist at Boston Children's but we only see her once every 2 months or if something is wrong. We have a great nutritionist through ThriveRx but what I have always wanted was a book or guide that we could keep on hand. Something that we can also share with our family and Ellie's nurse to help them understand the intricacies of Ellie's diet.

Finally we got what we needed. ThriveRx has created an online short bowel diet guide called Maximize Health. Each month they release a new topic, so far they have covered Diet overview, hydration, Carbohydrates and the next module is going to be on protein. The educational modules are available on line and then they host a webinar on the second Tuesday of each month led by the author of the modules. She gives a better explanation of the content of the modules and then at the end she answers any questions that you might have.

For us the Carbohydrate module was very informative as this is 80% of Ellie's diet. It changed the way we looked at her food and made us be much more aware of what she is eating. I am very excited about the module on protein since we know this is very important for Ellie but we are always struggling to get enough in to her.

The best part about this education program is that it is free to everyone. If you are interested just visit ThriveRx.net You have to register for the program, this will give you access to all the past modules, and recordings of past webinars and get you an invitation to upcoming webinars.

If you have questions about this email me at abbybrogan@hotmail.com.

They are also hosting a webinar next week on TPN stability called. TPN Compatibility and Stability: What’s the big deal? it s on February 4th @ 12:00 noon EST.

Presenter: Sheila Pedapati, Pharm.D.

She will talk about:

• Verification of IV compounds and supplies
• Patient counseling regarding medications, supplies, and pump use
• TPN compounding and different types of pumps
• Working closely with nurse liaisons to optimally manage patient care

IF you are interested in this one email: info@thriverx.net.

She Drinks!

When Ellie first came home from the hospital we were giving her most of her formula by bottle and just putting her on the milk pump at night. But, then as her bowels started to shrink back to normal diameter they started to work much better. The bottles started going through her very quickly. We soon realized that if we gave her an ounce we would see that ounce again very quickly out of her ostomy.
The solution to this problem was to slow the delivery time down, and that meant more time on the milk pump. She is now on the pump 24 hours a day. When we started her on the pump we stopped giving her bottles and then sadly, she lost her taste for her formula. (I don't blame her it tastes horrible) Try as we might we have never been able to get her to take a bottle of formula since. Then we tried unflavored Pedialyte. We still can't get her to take a bottle, but after trying 4 different types of sippy cups over 4 months and using numerous techniques , we had success! I think this victory was due to a combination of a very hot day and very cold Pedialyte. It may not seem like much, but now everyday she drinks around an ounce of Pedialyte, on top of the formula that she gets by pump.

I know only an ounce, but for us that is a big deal. Think about it... She eats two meals a day by mouth, but she never drank. Now we are taking baby steps to get her drinking more and more. Drinking will be an essential skill that will be needed to get her off of TPN and eventually remove her G-tube. But that is all very far ahead in the future, for now we will be happy with our girl that is very happy with her sippy cup.

Short bowel free trade

One of the interesting things that we learned from the short bowel folks at the Oley conference is that many of the medical supplies that we get for Ellie by prescription through insurance are also available on the internet and even Ebay.

For example a fresh g-tube, which costs somewhere around $1400 for Blue Cross to buy can be had on Ebay for around $30.

Likewise, the cases of special Elecare formula that Ellie is blowing through these days at the rate of a can every two days, go for around $300 for six cans. If you use Ebay, around $20 will get you a can.

This all drives home the fact that we are extremely fortunate that my insurance is so good. Paying for Ellie's supplies is an abstract thing for us since we make a phone call, order what we need (including a $1400 g-tube each month to replace the worn out one) and magically it appears on our doorstep the next morning. Today for example, three boxes arrived with 16 cans of Elecare, a g-tube, and some other accessories. no bill. Nothing but a packing slip.

Ahhh. Blue Cross and Medicaid. Two of my favorite things.

The thought of having to budget for these things and possibly change how we treat her based on cost is a scary thought for me but I know that it is a reality for a lot of families out there.

I am certain that we won't be going the Ebay route if we find ourselves with a surplus of anything if Ellie move son to another formula or another g-tube size. The Oley Foundation has a central clearinghouse for extra gear, formula and other things that can be exchanged among the SBS community. 'Free' to me means free to the next person who might need it. Turning a profit on someone else's need just doesn't seem right to me.

If you know someone that is new to the short bowel world, it is definitely worth looking up oley.org to learn about their equipment exchange. Short Bowel sucks enough without being expensive, too.

Oley

Well, we are back from the Oley conference. It was great. We knew three other families that were there from Children's hospital. The first day we spent the morning in a large group meeting talking about the future medical advances in the area of short gut and for people on TPN. Then in the afternoon Gib and I split up and he went to a talk about Central line care and TPN and I went to one about pre and probiotics. (prebiotics=food for your good bacteria that you already have in your gut. probiotics=adding more good bacteria to your gut)

Gib's sister Beth came along to help with Ellie. Good thing. This was our alternative
Then we both went to a meeting about pediatric issues. It was great, they talked about things we had not really thought of yet. Like, potty training a short gut kid, Tooth and bone development, and puberty. It was eye opening for us, but also good because there were so many parents there and their short gut kids looked great and were running around looking like normal kids. They were just a bit skinnier and had a few tubes.

The only thing we did notice is that most of the kids that were there had lost their intestines when they were a bit older, not many kids were there that had lost some of their intestines at birth. But then we realized, we (the Omegaven families) are the new group at Oley. Now more and more infants are surviving into childhood because of Omegaven. So many of the meetings were very helpful, but they were all really directed at adults and older children. So now Oley has to recognise this new group that will only get bigger and bigger.

The second day the morning was a large meeting with every one. The guest speakers were Dr. Puder (Mark) and Dr. Gura (Kathy). They were there to talk about Omegaven. I think the message got through. When you say that Children's Hospital Boston used to lose 6-7 kids a year to TPN induced liver damage and now they the lose NONE. That Toronto hospital used to have a near 90-95% mortality rate of children with TPN induced liver damage. Now they have 0%. It is hard to ignore.

After that meeting we all went out for a picnic with four other short gut families, Mark, Kathy, and Denise (the Uber nurse).
Sorry that Gib is blocking out Mark, but he is there. This is from the left Charles and dad, Maggie and mom, Luke and mom, Ellie and dad, Caleb and dad and Kathy and Mark.
This is Gib and Ellie with Dr. Kathy Gura(discovered Omegaven) and Dr. Mark Puder(started and is currently running the Omegaven project). These are the people that are responsible for our happy, healthy baby girl. The only person missing is Dr. Jennings. This is Ellie and Luke on the swings together. It was Ellie's first time on a swing.
Ellie and Maggie playing peek-a-boo.
This is Luke and his mom with Charlie's mom and Charlie playing with Gib. Charlie is the first little boy that was put on Omegaven. They were willing to try anything to save his life. It had only been tested on mice before Charlie, and now he is four years old and his liver is doing better than mine.

If you look back at all the pictures in this post, you will notice that most of these cute kids have back packs on. That is what the whole conference was like. Halfway through the first meeting I realized that many of the adults had little back packs or fanny packs on. Many of the people there were on TPN almost all day and some were on G-tube feeds almost all day.

We had a great time an learned a ton. The biggest take home message we got, is that we are incredibly lucky to be at Children's Hospital Boston. Next week we are making an appointment to talk to Dr. Jennings about a bone density scan, leaky g-tubes, and starting pre and probiotics. Ellie passed out after the picnic. We were in the middle of emptying her ostomy when she fell asleep. Like her shirt?

Secret Club

This is a club that we didn't even know that we joined. It just seemed like we would be out shopping with Ellie one day, and some one would come up to us and say ,"Hey, nice pump." And just like that we were in. With just that one statement we would feel like we knew these people and they felt like they knew us. That we knew something that everyone else around us didn't, and that no one around us could understand unless they had lived thought what we had.


These people would be just about anywhere. From the lady who fit Ellie for her first pair of real shoes, a sales woman in Macy's, to a woman in a book store who chased us down to get a better look at Ellie's backpack. The woman in the book store caught up with us and first thing she did was whip out her own pump. I guess that was like our version of a secret hand shake. We stood in that book store and talked about life with tubes and all that comes with it. It was great.
So tomorrow we leave for the Cape where we are going to attend the national conference for the Oley foundation. The Oley foundation is for all people that live with tubes, IV or G-tube. Patients, parents, doctors, nurses and specialists from all over the country are coming to the conference. There are a bunch of lectures and then in the afternoons there are break out sessions when we get into smaller groups and have more personal discussions, with specialists and parents/patients, about the issues that concern us.

We are very excited for this conference not only because many other Omegaven families are going, or because Dr. Puder will be presenting, but because of all the other kids/adults that will be there with tubes. For three days Ellie will be normal. I don't even know if she will notice, but I really want Ellie to see all those other people with tubes. This meeting will be like a huge meeting of our secret club.

The subjects that they are covering are really interesting to us and we hope to gain some very valuable knowledge about things that we can try with Ellie. Gib and I have to admit that we do find that we are chickens when it comes to trying new things. Especially when she is doing well. But, we need to expand our knowledge because you never know, she could be doing better.

We will try to post while on the trip. If you are a short gut parent/patient and you have some questions you would like us to ask about at the conference please email them to me (Abby) and we will do the best we can. Gib's sister Beth is coming along to help out with Ellie so that we can attend as many meetings as possible.

On a side note, as we were packing today I had a bit of fun with Ellie's hair. It is getting very long and I just couldn't help myself. Check it out.Yup, Pigtails. After so many months of cute but bald Ellie, I was so happy to be finally be able to play with her hair. They didn't last long, she figured out how to remove them very quickly. But it was fun. She was in rare form tonight, I also got some video.

To bathe or not to bathe

This is a question that we used to debate regularly. It is a personal decision that all short gut parents are faced with. The worst part is, there is no right answer.

When we prepared for discharge from Children's we were trained by a nurse we now call Uber nurse. She gave us an excellent training on how to care for Ellie's Central line at home. To refresh your memory a Central Venous Line (CVL) is a very small white catheter that enters Ellie's body via a vein in her chest, it snakes up to her neck and then goes under her sternum and down straight to her heart. This is how the TPN and Omegaven gets into her blood stream every night. The Uber nurse taught us how to care for the line, the entry site, the dressing that keeps this area dry and sterile, the cap that connects her IV line to the catheter and everything and anything else that might have to do with or could happen to the CVL.
The Uber Nurse incredibly knowledgeable, and has an amazing sterile technique. After a few trainings with her we started to notice when other nurses were not being as sterile as they could be, this is when we took over all of Ellie's CVL care. If we have any questions about the line we call the Uber Nurse. If we are at the hospital for clinic and they want to access Ellie's line, the Uber Nurse is the only one that we will allow to touch it.

The reason we are so careful is that if bacteria gets into the line Ellie will get the dreaded LINE INFECTION. Because the line is in her heart, that means her blood gets infected and that is never good. Ellie has had two of these in her life. She (knock on wood now) has not had one for 10 months. So whatever the Uber Nurse taught us, is working.

Now as for our dilemma. During our CVL training the Uber Nurse stressed again and again how important it is to keep the dressing and the whole area dry. When we were inpatients a few mornings a week Ellie would get a sponge bath and we would wash her hair while being very careful to not let the dressing get wet. When we got discharged we continued bathing Ellie this way. This means that Ellie has never had a real bath. She has never been able to play in the water. After we where home for a while I started talking to other short gut parents and discovered that we were in the minority. Most short gut parents bathe their kids just like normal kids. They put a water proof dressing over the CVL dressing and then change the whole dressing after the bath. Some parents let their kids swim, go to the beach all things that we thought we would never be able to do. So when we were in for clinic the last time we went and found the Uber Nurse and picked her brain. Where we being overly protective/hydrophobic?

Her response was, "Before you decide to risk the CVL you have to consider if the child is going to have a CVL for life, how old the child is and why you want to take them to the beach, swimming pool or give them a real bath. Ellie is so young that she doesn't know what the beach, swimming pool or bath tub is, so she will not miss them. Really you would just be letting her swim in the ocean or pool to make you feel better not her. If she was older or was going to be on TPN for life it would be a different story. Right now, don't risk it, continue what you are doing. It's obviously working."
At first I was sad, no Ellie playing in the water. But, I know she will have her time in the water, the girl is going to have gills anyway from all the fish oil. Water is just in her future, not in her present. We don't know how long Ellie will be on TPN, find me in another two years and I may be tossing my CVL child into a swimming pool. But, for now we will continue putting Raffi's "Banana Phone" in the CD player and bathing Ellie on water proof chucks in the middle of her bedroom floor.The best part of giving Ellie a bath is that I get my fix of clean baby smell. I think I could become a very rich woman if I could find a way to bottle that scent. When she sits on my lap to read her bedtime story, I can't stop my self from sniffing her hair the whole time. I have a problem, and I admit it. Oh, well.

Clinics and Coasts

On Thursday Gib and I took Ellie in for a clinic appointment with the Short Bowel Clinic at CHB for the first time in a month and a half. It went well, Ellie is gaining weight again and has grown another half inch. Even with her pause in weight gain last month she is still in the 50% for weight and 70% for height. They were very pleased with her progress, but would like to see her continue gaining. They also recognize that with her current energy level she needs more calories. So we increased the concentration of her milk formula which increases the calorie content. She went from 20 calories per ounce to 25 calories per ounce. She is still on PN for 6 nights a week with one night off when she get just D5 mixed with half normal saline. But we didn't change anything with her PN just her milk.
It was a great visit because most of the doctors were away at a conference so we got to spend more time with the TPN guru and the nutritionist. They were very helpful and we got so many questions answered. The nutritionist gave us some great pointers as to what new foods we can try and how to make them ourselves so that we don't have to buy everything.Here is a picture just to remind you all whose daughter this is. Check out that hair. Gib got it wet after feeding her to clean off any food that found its way up there. Then on Friday we headed north to spend the weekend in Maine. We arrived on Friday and stayed until Tuesday morning. Last time we made the trek up there we decided that we needed to stay for more than one night to make the trip worth it, and four nights was great!

The weather was very hot for Thursday, Friday here in Mass, and we thought that it would be cooler in Maine. But it was just as hot if not worse. Ellie handles the heat well, but she did start to get a bit dehydrated from sweating so much. So we gave a call to Apria(our supply company) and they got a few bags of hydration fluids out to us. After a good hit of the new fluids she was good to go for the whole weekend. Hooking Ellie up for extra fluids is new territory for us, but it was something that we were told we may have to do. Especially in the hot summer months.The trip to Maine was a huge success, we all had a good time playing with the cousins, exploring the Maine coast and spending time with family and friends.It was Ellie's first time seeing the ocean, and first time at the beach. She even managed to eat a few pieces of sand just to keep things interesting.Ellie and Gus got to see their first parade and Ellie enjoyed her first gram cracker. Ok, so really all she did was gum it, but she seemed to like it. Gib's sister and mother even babysat for a few hours for us so that Gib and I could sneak out to get some new clothes and enjoy a quick meal out. Gib and I forgot how nice life was near the water, maybe on the next visit we can get Ellie out on the boat.

'Oh, Shit!'

Just when I thought that things were getting dull and that I didn't have anything to write about nd exactly 24 hours after Abby joked with me whether I wanted the Bertucci's coupons from the Sunday Globe, those were the words that I heard from Ellie’s room this morning as Abby and our visiting nurse did their twice weekly check up on Ellie’s plumbing.

Oh, shit isn’t the best thing to hear as they do sterile procedures and when Abby yelled down the stairs to get the ‘go bag’ ready. I knew as I bounded up the stairs that one of two things had happened: either her line was broken or her ostomy had prolapsed again. Both earn us a complimentary trip to 300 Longwood Avenue.

The first had happened. Sort of. While doing another procedure, Ellie had grabbed hold of her central line and pulled on it. Hard. This separated the thin interior tube from the beefier exterior tube and the whole thing had slipped about 2 inches out. Since the other end of the line is in a major blood vessel near her heart, we knew that the placement of the business end was important. Since the meds and TPN that go in are very concentrated it needs to be placed correctly.

Abby and the nurse finished up and got Ellie ready to go while I packed three bags of essentials, called the hospital, and called in sick. At just after 10 this morning we were rolling towards Boston.

One of the funny things about Abby and I and our limited experience is that instead of worrying or having any anxiety about the issue, we were wagering about which floors we would visit, in what order and ultimately whether we would be spending the night. The current odds at 1:23 PM is 70/30 in favor of a surgical replacement of her line and a night here in Boston. We have been told that repairs can be made to the line but it is well out of place and probably needs to be replaced. I am not a radiologist, however, so my opinion means jack squat.

Other than that, we have been spot on the mark about where and who we would go and thanks to a call from Dr. Jennings, we managed to skip 3-4 steps in the ER and come directly to his office, which is great.

Gus is manning the homefront for us while we are here. I hope that the house makes it through the day. If I know my dog he hasn’t left the couch.

More to come as we figure it out.

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.

Ellie's Boyfriends

Ellie got a chance to go visit her boyfriend Christian, and pick up a new one, when we had our first ever play date yesterday. We went into Jamaica Plain and visited Christian and another little boy named Max. Christian is doing great post transplant and Max is here from Denver to get on Omegaven.

It was great to see both Christian and Colleen and Christian looks like a new little boy. First thing he did was push all the toys away from Ellie and then started hitting him self in the head with a couple of other toys. Such a boy!



Ellie got even though she later tried to use Christian as a stepping stool. He didn't really like that. He didn't like that, but they did have a good time exploring the great range of toys that Christian has.

Ellie does have one major problem though. She scares all the boys away.







When she gets really excited she lets out an incredibly loud squeal. It was this squeal that made all the boys cry. I don't think Christian or Max minded having Ellie come to visit, they just wished she would have been a bit more quiet.

Max is 8 months old and has been on Omegaven for 3 weeks now. It usually takes around 30 days for Omegaven to do it's thing, so they have a bit longer to wait. He is very cute hopefully we will get to see more of them before they go home.

I hope the boys had as much fun as Ellie did, she fell asleep almost as soon as she got in the car and took a nice long nap when we got home. It was great to see Ellie interact with other kids, we may need to work on her manners for next time. She just has to remember that you play with the boys not climb on them. Maybe next time Christian can teach Ellie how to say "ball" or how to do his great monkey impression.

Gut Drugs.

Ellie is on a string of drugs every day to help her deal with her limited plumbing. Off and on, she has been on these and some others forever.

Reglan (Metoclopramide if you are our generic friendly insurance company) is a drug that helps Ellie move things down the pipe and through. Her motility has been pretty bad in the past and Reglan may help to boost this. This is one of the standard list of short gut drugs that seemingly every short gut kid is on. Some parents question whether this is necessary but it seems to do some good for Ellie. She gets this four times a day, either by mouth during the day (‘p.o.’ as the docs say) or through her G-tube when she is sleeping.

Actigal (Ursodiol) This is bile salt that is found in bears. No kidding. But, instead of finding Yogi and milking his gall bladder, they synthesize it.Bile salts help you digest fats in your intestine. Since Ellie doesn’t have full function in her intestines we give her this to give her digestion a boost. It also has good effects for her liver. Another of the cocktail of short gut drugs that every kid gets. She gets this twice a day either by mouth or by G-tube.

Iron- For some reason Ellie is anemic. To boost her iron levels she gets an iron supplement twice a day. We have just started this and will keep her on it until the measure of her iron ‘hematocrit’ comes back up to normal levels. She gets this twice a day p.o or in the g tube.

All of that brings the grand total to 8 times a day that we have to draw up the drugs in the tiny little syringe and pump in into her. 8 times that we have to remember to do this. Checklists and alarm clocks help, but we miss them every now and then. We are getting better. Hopefully they will help help get better at digesting and absorbing.

A peek under the hood

Ellie had a string of meetings with a new round of professionals at the end of last week from the Early Intervention and the Community Nursing Programs.

They were here to assess her for their programs and couldn't get over the fact that the girl that was playing with them was the same girl that was described in their paperwork. A central line, a g-tube and an ostomy paints the picture of a sick little girl.

Instead they met this:


But it only took the nurse a quick peek under the hood to see that yes, in fact this was the same girl and that she did have all of this fancy plumbing:

From top left down: her central line, her g-tube, and her ostomy(filled with cotton balls to absorb all of the formula that is going through her these days). Lots of stuff crammed into a tiny little belly, but it all fits and amazingly we can access each part separately to do maintenance .

The results of the meetings were good. Ellie will continue to go through the Early Intervention screening to see if she needs extra attention with speech, physical or other therapies.

The best news is that the Community Nurse has okay'd us to start nursing at the same level that we had it when we came home-10 hours a day. This will be a great help. It will let us take a deep breath every now and then. We hope to use a lot of those hours at night when Ellie is asleep but still needs care. Unfortunately, we are learning that the nursing shortage includes home nurses.

Hopefully we can find a combination of nurses to come and meet Ellie.

If you know a good private duty nurse around here, tell her that we have a cute baby and cable.....

New Philosophy, Happy Baby

Now that Ellie's line infection has seemingly gotten under control, we have started feeding her again to keep her bowel happy and keep her moving down the road. Moving down the road but with an entirely different driver.

Dr. Jennings believes that Ellie's dilated bowel is very stressed and that our goal should be to bring it down in size first and foremost while allowing it what it needs to continue to thrive and be there when she needs it.

The plan is slow feeds (2 ml/hour)for a week or two. Just enough to bathe the insides of her small bowel with food which will keep it healthy and active, but not so much that will stress her bowel or, even worse, make it larger and less functional. His estimate is that Ellie's bowel can hold 500 ml of food before it backs up and that we could have a problem with overfeeding her and not know it for days or even a week before she shows us that she is over fed. The big quantities that we were so excited about a while back could have been bad thing.

Slow and cautious feeds is the order of the day.

On Thursday night we thought about starting her on the pump but opted not to start her on a new thing at night. We learned this the hard way- sometimes she has trouboles with the first day of food and it is better to have those troubles during the day instead of at 3 AM.

Friday morning we started her with 2 ml bottles throughout the day. She wasn't too keen on them. I think that she amy have forgotten what they were but she was ready to roll on the later bottles that day. She got eight hours worth of food by the end of the day.

Since continuous feeds are easier on the pump at night when we met with Dr. Jennings that night we agreed to put her on the pump that night for another 8 hours at 2 milliliters per hour.

She tolerated this for six hours before giving me the 'full' sign with stomach cramps, a sore belly and kicking legs. We stopped the feeds and gave her Saturday off. No pain, no cramps.

I like this slow thing.

Saturday night there was some question about how we would go about her feeds. Abby and I were nervous about overfeeding but we knew that she needs something in her belly to send down the pipe. On the other hand, the resident on duty had orders to feed her at 2 ml an hour.

Knowing Abby, I shouldn't be surprised how this story ends. Not only did we successfully feed her how we wanted to, but by the time we finished talking to her, the resident fully supported this and let us write the feeding plan for the night. Yup, handwritten notes on lined paper at her bedside.

I guess that it follows the cardinal rule of babies: You know your baby best. Sometimes it takes a little persuasion to get this across.

So far so good on the feeds. she is slurping the tiny bottles and taking the pump feeds at night.
Hopefully things won't back up and we can let her bowel come down.

A long way from the earlier feeding plan of push, push, push. This makes a lot of sense and we are very happy with our new fearless leader.

Ellie likes it, too.

GI tract 101

To go along witht he diagram of Ellie's external plumbing that I posted a while ago, I thought that it mightbe useful to include a diagram of what her plumbing should look like in side and where she is different.

Simply put Ellie is missing her intestine from the midway through the Jejunum through the Ileo-Cecal valve, including her appendix. No appendicitis is a positive side effect, I guess.

The surgeon replumbed her to make what is left of the jejunum connect to her colon, the express route for her dinner. The trick will be to teach her gut to slow down the express to make local stops and discharge its nutients before the colon, which does a different job than the small intestine. Fortunately, the doctors tell us that the small intestine can change its form and function to become a sort of super functioning intestine.

I've always wanted to know a super hero. Maybe Eliie will be Gut Girl, or Absorbo.....