Tubefeeding book

A book was just published by a tube feeder for Tubefeeders and their families.  It is a guide on all things tubefeeding.  Check it out here https://www.createspace.com/3811540.  I have followed the author on his blogs and in forums and he is all about sharing knowledge and making things easier for tubbies.

I am researching AAC programs (communication programs) for Apple and Android mobile devices.  Watch for a review blog coming soon.

Oh and here are some pictures of the cuties: no super new ones but cute ones.

I will eat anything!

6 month shot

Gotta love a good tractor.

Luke and his flip up book.

Making a tower.

"Wow mom look how high"

Reading with daddy.

Feeding Tube Awareness Week - Life with a feeding tube

Luke eats through a tube. He has never eaten orally and right now is not allowed to eat anything orally as we are not sure that his muscles and all the swallowing parts function. We do think he can swallow but as a three year old who has never practiced it would be dangerous to try as he could choke on his food or fluid could get all they way down into his lungs causing an infection and difficulty breathing. So we feed Luke through a tube. So what does that look like?

(click the pictures to see a bigger version)

Luke plays with toys while eating. We also encourage him to put an appropriate toy in his mouth to associate oral stimulation with eating.

This is a picture of the actual button that we feed him through.

We used to hold him and feed him. As babies are held to get nursed or bottle fed. We probably held him until he was 2 years old or so. Then we moved to the high chair. I have been trying to make his live as "normal" as possible within the limits of his medical issues. So he eats in a high chair. He usually doesn't eat when we do as it is hard to feed yourself and him at the same time, although it can be done. We are lucky that Luke doesn't have any digestive issues, he just isn't able to get food to his stomach so we help with that.

Luke is fed 5 meals a day. Right now I blend up his entire day's nutritional requirements and then divide it up in 5 equal parts. We have thought about making 3 bigger meals and 2 snacks but our lives our a little crazy and 5 equal meals is working right now. We feed Luke real food that you or I would eat (or maybe not, he eats beet and turnip greens, and is a very good disposal for nutritious veggies from our farm share that we don't really like or eat as much of). For more on his food go to these posts: Blenderized diets. I must say that the medical world of tube fed babies, children and adults in American seems to be centered on feeding tube fed people formula or some form of it. And yes some people have allergies or special requirements and they need this formula. But for the most part I really don't like that the medical professionals are so against feeding real food to tube fed kids. I have had my run ins with dietitians. I have found that it is easier for dietitians and others to calculate all their calories, fats, proteins, ect.. when they can just read it off a label and it is all neat and clean. I have had a conversation with a dietitian where I was asking a question about fluids and she basically told me that if I was using formula it would be she could give me an answer right away but she would have to have me submit to her Luke's blends of food so she could run them through her program. So I asked my pediatrician, which I should have in the first place, and he gave me an answer as he would for other kids. Luke is just another toddler. His food just arrives at his stomach a bit differently.

Okay so what does feeding with a feeding tube entail. Well you need to make sure you have enough supplies. If you don't have tubes that connect to the button that connects the outside world with his stomach then he can't eat. If you don't have a syringe to put on the tube, he can't eat. Also, you have to make sure the button that connects to his stomach is working and doesn't fall out. The hold the button is through is a constant open wound. Think about that, having a constant open wound. Before Luke was very mobile he had the best g-tube (even though it is a button that is what it is called) site the doctors had seen. Then he started crawling and standing and walking with his walker and it does not look good anymore. We are constantly watching it and it bleeds and oozes and there is a lot of extra skin growing. It can get infected so cleaning and constant care are a must.

One thing that is hard for us is that if you forget food, or are somewhere and aren't going to get back for dinner normally you would just pick up some food, either at a restaurant or grocery store. With Luke if you forget his food, you have to go back to get it, or get back to the house if you forgot it. We were on our way downstate and forgot it, thankfully my dad was able to go to our house, pick it up and then meet us halfway back home. We had left early thankfully so we were only a little late that day. There is a lot more planning ahead and awareness for meals for Luke.

Some pluses of eating with a tube...

you don't have to taste those icky nutritious things

you can eat while you sleep, although lately I am trying to not be feeding Luke when he sleeps

it's easy to eat a perfectly balanced diet

Kids are super curious which is good, I don't mind telling them about Luke and his tube and they usually think it is pretty interesting and sometimes cool. Parents get a little weird when their children stare or ask questions. To parents I would say if you see your child looking take that as a cue to ask questions yourself and you and your child will learn. I have heard other tubie parents say they have had some bad reactions from people. I haven't seen this and I am glad. It is a little odd and takes some explaining when someone wants to just give your child food (we are so protective and must look it because it has only happened once or twice to us) and you tell them they can't have it. You usually have to explain its not just you don't want them to have sweets it's that it is dangerous for them to have it.

Luke does get hungry, although not often, we feed him on a schedule and he really only complains and gets ansy when we are off the schedule by a lot. He knows his food and syringe and tube. He likes to watch the food move to go in.

Right now we expect Luke to eat one day. We are doing oral motor therapy to get his muscles working for when that day comes. We are also working on getting him tasting things off his finger and putting small amounts of food in the back of his mouth with a syringe to start training him to swallow it.

So there you have a little of life with Luke and his feeding tube. :)

Luke's Story – 3 ½ to 7 months old – First Summer

Luke's first months home were busy and full of adjustments. Luke came home on May 20^th and we had a busy summer ahead of us. We loved being able to be in the same place as Luke all the time. We did have to get used to being confined to one area of the house with Luke because of all the machines he was attached to. At some point we got ourselves together and had a regular set up with his vent and suction in the living room and just moved the pulse ox and apnea monitor when we moved him. Still this only afforded us really two places to be with Luke. We did get him loaded up onto his Kid-kart (a stroller with a lot of carrying capacity for his vent, suction, vent battery and monitors) and took him outside a few times for a walk around the yard. He fell asleep the first time out but the next time he was awake and right away liked to touch trees and look at everything. We live in a swamp (a forested wetland) and there is lots of nature to see. Luke still loves to touch leaves, needles and bark and constantly signs for more when we are outside.

Between Luke's appointments for casting to correct his clubbed feet every week and seeing our other 9 specialists we were in Grand Rapids (GR) at least once a week and two months after being home we were there three times in seven days with a night of no nursing in the middle. It was a pretty crazy summer. Grand Rapids for us is 3.5 to 4 hours away depending on stops to change diapers and other things. Luke did great and was a pretty mellow go with the flow baby which was awesome! He did get fussy sometimes which worried me but then my mom reminded me that he is a baby and babies fuss.

We saw the pulmonologist for this first time about a month after coming home. I was pretty nervous because I had been having a hard time effectively communicating with her in the NICU and I was pretty set on starting to wean Luke off the vent as I thought he was doing wonderfully. The pulmonologist said they like to wait for two months of being home and stable before weaning but allowed Luke's PEEP to go from 6 to 5 on that first visit. We communicated wonderfully and I was feeling good about our future relationship with this pulmonologist.

In June Luke also saw the Neruodevelopment team which consisted of a physical therapist (PT), Occupational Therapist (OT), speech therapist, nurse, social worker, and a doctor. It was a long appointment but they gave us some good ideas about how to help Luke get strong enough to hold his head up on his own. (Luke was 4 ½ months at this point). We also were getting the process started to get into the Early On program with the school system and get a PT and OT to come into our house and do therapy with Luke. We were working off of the PT and OT suggestions from the NICU and were excited about the possibility of help on a regular basis. We ended up with an OT, who did some PT as well, coming about once a week. We had PT 1-2 times per month and speech therapy and vision therapy each once a month. I liked all the therapy because it helped Luke get used to other people, gave me new ideas for therapy and kept me more accountable to work with Luke.

At the end of June Luke had a GI bug and a possibility of some seizures that the nurses had been seeing. We had and still do have nursing 12 hours every night. Neruodevelopment scheduled an EEG for one of the next times when we were down in GR. He didn't have any more seizure activity before the EEG and the EEG came out normal. You don't always see seizures on the studies but the doctors still decided to wait and see if he had more before treating with medicine. The doctors were reluctant to use seizure medicine because it can be a long term medicine once a child is put on it. I was okay with this as I am not a medicine person and Luke had so much other medical intervention I hesitate to add more.

Luke is very “talkative” as he has learned to make noise over then vent. He really has only one or two tones but we love to hear it. It is very cute. It is also a way to judge how he feels because when he gets sick and doesn't feel as well he doesn't make as much noise. Since he doesn't have facial expression this was a good indicator for us when he was little. Since being taken off the vent during the day he doesn't make noise. With the vent he had something to push against to make the noise and with just the trach that isn't there. We miss the noise but not the vent.

Luke LOVES to look at his hands. He is amazed by them and he does all sorts of things with his fingers. He pinches his thumb and first finger together and is just really cute about it. He likes to play with and bat around his cloth blocks and other toys in his crib as well as his mobile.

At the beginning of July Luke had his first blue episode at home. I woke up when the nurse called me down. Luke had turned blue and she has used the ambu bag to bring him back. By the time I got there he was very pasty and pale but awake and alert. He fell asleep shortly afterwards for about 15 minutes and then woke up ready to go like nothing had happened. I called the pulmonologist to let them know and they wanted us to go the ER to have him checked out. They did x-rays and blood work and found nothing. I think Luke just got some water down his tubes. In the hospital he had a lot of episodes where he turned blue and his stats dropped but we got him back fast and easily. We couldn't conclusively prove it but were pretty sure there was too much water from the humidifier in his vent tubing that would build up and flow down into his lungs sometimes. In the hospital we had notes on his crib to keep his vent tubes flat with no places to collect water to try to prevent this. We also turned the temperature down on his humidifier so the difference between the air and tubes would be less and thus less condensation would happen.

Also, during this same time a nurse saw another seizure which we were going to talk to the neurologist about when we saw him a few days later. And Luke had a head cold as we were pulling yellow/green stuff out of his nose. Thankfully this stayed out of his lungs.

When we saw the Neurologist they wanted us to get a 24 EEG and a MRI to try to catch a seizure and see what was really going on. Getting an MRI would mean Luke would need to be sedated and a different trach would have to be put in because his current trach has metal in it. We would do the MRI and EEG in the same trip and spend a couple of days in the PICU at DeVoss Children's Hospital. We needed to be in the PICU (Pediatric ICU) because Luke is on a vent and thus considered fragile. These were scheduled for September.

By the middle of July we were in the normal swing of things again and got his third tooth! Luke is now able to sit up (with help) and hold his own head up. We are still working on the head control when he is on his tummy though. His hand control gets better and better all the time and he is really into shaking toys right now. He figured out that he can make his mobile move by shaking the rings we have dangling from a line across his crib and through the mobile. All this shaking and noise makes it easier to tell what he is doing when you are not right in the room with him. He has fallen asleep with his arm in the rings and was even moving them in his sleep.

A bad thing that happened was that we lost our 3 days a week nurse. This was a large portion of our nursing and took us totally off guard. It happened right before she had 3 out of 4 days on. There were a lot of not so nice phone calls and some lost sleep but a nurse already with our nursing company stepped up to fill in, temporarily at first but then she fell in love with Luke and decided to stay and is still with us :)

At the end of July Luke was finally done with his every week castings and his Achilles tendons were clipped and casts were put on for a final three weeks of casts. During his castings Luke had started with plain plaster casts, which is normal for castings to correct clubbed feet. However, Luke spent his days banging his casts together and broke through them so had to get them reinforced with fiberglass. The fun thing about this was that he got to get a different color cast every time. The tendon clipping was met with lots of crying and as much soothing by me as I could do and still have them be able to do the procedure. After all the fuss he was asleep before they were done casting. After three weeks the casts were cut off for the final time and Luke was free. Well almost free, he now had sandals attached with a bar that turned his feet out. He will wear the sandals and bar 23 hours a day with only an hour break for at least three months. The first day with theses on was very trying and I have never had Luke cry so much. It was very hard for me to go through but fortunately I had my mom to help me out that day and she helped a LOT.

The casts came off just in time for his baptism which was his first trip to church. We had Luke on a look but don't touch plan at church, and he still is. Yeah maybe I am a little crazy but there are a lot of people handshaking, eating, coughing, ect... at church and then exchanging it with everyone else. Luke was serenaded with a baptism song by my mom's drum group and he was baptized by my dad and our pastor.

Luke's July visit to the pulmonologist went really well. I was prepared to have to ask to have him start weaning and the doctor came in with a plan in place to start weaning Luke the next day! We were going to start by lowering his back up breath rate by two every two weeks. Also the nutritionist, who I thought should have increased Luke's food at the last visit came in with an increase of food at this visit. So good all the way around! Through all this I was pumping breastmilk for Luke. So some days all I felt like I dealt with was food, either pumping it or feeding Luke.

Luke's first visit to the ophthalmologist gained him a pair of glasses at just 6 months old. His Moebius Syndrome lends him to have crossed eyes which is compounded by finding out he is far-sighted and far-sightedness lends itself to having crossed eyes as well. The far-sightedness is not from Moebius Syndrome but is genetic and from my mother, who had glasses at 11 months. Luke got the cutest little white framed glasses. Thankfully they were made out of a silicon with polycarbonate lenses so basically baby proof. And he looks so cute in them. He doesn't pull them off his face and in time he started putting them back on his face correctly when they accidentally came off. However, when upset he will grab at them and pull them off, but he usually tries to put them back on soon afterwards.

Our first summer with Luke was quite eventful and at the end Luke was down to 10 on his breath rate, had new glasses, done with casting and onto the Ponsetti brace (bar and sandals), holding his head up, and just being an all around cute baby.

So I just remembered some more things about that time for Luke.  First, he started signing!!  I think his first sign was "milk" and he did "diaper" and "suction" pretty soon thereafter.  We started teaching Luke sign since he can't talk and between the trach and Moebius Syndrome facial paresis we were pretty sure it would be awhile.  Currently Luke is very talkative with his sign and he babbles and makes up his own signs.

Also, after Luke was done with all his surgeries they found he had high blood pressure.  The Nephrologist's working theory was that the high blood pressure was due to some acute damage to the kidneys from his umbilical catheter that was places at birth and in for a few days.  He was put on high blood pressure medication and his blood pressures were monitored at home by nurses and every time we could get to their office when we were in GR we got a blood pressure.

Luke's g-tube and feeding history Part 3 with a little bit of bloating and refulx

So in December some time Luke had a couple of things start to happen that we still don't really have explanations for but they are not happening anymore and didn't happen with that much frequency even when they were happening.

First, he would wake up at night high pressuring his vent by bronchial spams (his airways opening and closing or spasming).  When his vent high pressures it is because the vent is using more pressure that we would like to put air into Luke's lungs.  This usually happens when he is out of sync with the vent or crying, or purposely trying to get our attention by pushing air back against the vent.  Luke would not really be awake during the time.  His eyes may open but he was really really trying to be asleep and he was also arching his back and seemed to be very uncomfortable.  Holding him may help for a minute or two but that was all.  This first episode lasted hours.  It was not fun to watch as a mom who could do nothing.  The next night was fine though and I was hoping this was just a fluke.

A few days after this we also noticed that Luke's button got really tight and pretty quickly, it seemed like in the space of a couple of hours and the nurse didn't notice when she was feeding him in the morning but I noticed 3 hours later.  I just watched it but noticed that there was bright yellow bile coming up from his g-tube when we burped him before the feeding.  By that night there was some dark coffee grounds looks stuff coming out from around the stoma and sometimes in the feeding tube.  This was not too good but I didn't know what to do and at that point was hoping it would go away soon and I had just eaten something weird that had come through the breast milk to Luke.  Well the next day Luke was uncomfortable and lethargic.  By the time Kevin got home I was worried but we thought we would watch him for a bit more.  By this point lots of coffee grounds were coming from around the tube.  He was looking so uncomfortable and maybe it pain, it is hard to tell with a Moebius child who has no facial expression we decided to take him in.  His button was super tight and he seemed very bloated.  We called the surgeons who put the button in who agreed with taking him to the ER.  When we got there the ER doc ordered an x-ray to look at where things were and saw that there was some pocket of something by the tube.  He called the pediatric surgeons from DeVoss and over the phone they thought that the coffee grounds was dried blood and this would irritate the stomach and was likely what was bloating it and it is hard for Luke to get rid of excess air because he has a Nissen Fundoplication which pinches the top of his stomach so things can't go back up and possibly aspirate into his lungs.  They instructed us, Kevin and I, through the ER doc to take the button out and let things drain and then put the button back in.  I like to do as much as I can myself, some people don't want to be the bad guy but I would rather have someone who knows Luke and is comfortable with him and him with them to do stuff too him.  Also a lot of docs don't seem very comfortable with Luke because he is on a vent and they assume very fragile.  Also I am pretty go to and in your face.  So the ER doc was very happy to let us do it.  He was finally sleeping at this point which we liked because he wouldn't be so wiggly.  Well when we pulled that button out there was a mini volcano of coffee grounds and bile.  Luke's stomach immediately went back to a normal size and Luke woke up and started making noise and was his normal happy, playing self.  It was like we just turned a switch.  I was ecstatic that it was that easy and wished I could have done it from home.  The docs gave us a prescription for Zantac to help calm his stomach and sent us home with Malox, I think, until we could get the Zantac the next day.

I remember talking to maybe the pediatrician and I am not sure what other specialist about the night time episodes and the tummy bloating and not really getting any answers.   The next time we were at the pulmonologist (which may have been a month or two later) I ran the night episodes, as they were still happening, by the doc and she immediately said she thought it was reflux.  They thought that the food was coming up just enough to trigger the Vagus nerve which signaled reflux and protected the airways from aspiration by having bronchial spasms.  Even with the Nissen Fundoplication they thought that reflux just a little bit up could trigger the nerve.  I have also read a lot about Nissen Fundoplication that fail.  The episodes sometimes had a lot of suctioning and sometimes not.  The suctioning seemed to go more with the face that the spasms where creating the mucus than any food getting up there so I didn't think the Nissen Fundoplication had failed.  I also started making sure he was fed sitting up or at least with his trunk up and leaving him inclined for at least 20 minutes after each feeding.  We used towels to incline his crib since the nurses fed him in there twice a day. 

These reflux episodes can be minor to severe, I think all in all there were only 2-3 really sever episodes and maybe less than 10 minor ones.  However they usually lasted for an hour or more.  It was awful to watch and not be able to do anything.  Luke couldn't stop the spasms and they would wake him up and then the uncomfortableness of  reflux just sent him to a place where no person could sleep.

We continued to take Zantac and got an appointment to see the GI docs.  I was talking to the pediatrician about the reflux episodes, they weren't stopping and he offered to prescribe Prevacid.  I was wary and didn't want to because I had heard some. bad things about it from other blenderized diet parents.  However, when we saw the GI doc (which was in May and this all started around December) she could not say exactly what it was especially because the episodes were so few and far between.  She said reflux is difficult to concretely diagnose and she wondered if Luke just had a really sensitive stomach.  With all the big episodes, but I don't think so much of the small ones, I had been trying to find anything that could have triggered reflux or any of the reactions we were getting.   I had figured out that the big episodes were linked to him accidentally getting 30+ ml more in a feeding or being fed while laying flat.  The doc thought this supported the sensitive stomach but since we had recently had a bad episode she wanted to try Prevacid for a month and then no reflux meds and see how things went.  I agreed to the Prevacid after asking many questions and being assured that getting off it would be very easy if he did not have reflux but still not too hard with reflux (I had heard stories that once you started Prevacid it would be hard to wean a child off it).  Prevacid basically stops the acid production in your stomach which is a pretty major thing to do.  But for a month I would try it.  After a month we got off all medicine and we have not had any reflux or should I say "reflux" episodes in many months.  We will see the GI doctors in a month and hopefully that will be the last time.  I am hoping we were just blowing up out of proportion a normal baby digestive system getting used to the world thing. 

I was also trying to see if the stomach bloating/tight button episodes were correlated with the reflux episodes (I am a trained research scientist).  And for the reflux episodes I never wanted to test Luke by giving him way to much food or laying him flat to feed and seeing what happened because I didn't want to cause him hours of no sleep and pain at night.  It ended up that it didn't always happen after reflux episodes at night but also a couple days before a bad reflux episode so we determined that they were not directly tied together.

The bloating episodes were still going on through all of this.  Mainly in January and February I would say.  We pulled the button out and drained things once with good success.  We never got as much out but then we never let it get as far as the first time.  One time we pulled the g-tube out to drain in and then put it back in and two hours later he was bloated again.  After a couple of times in and out where it didn't make a difference we stopped taking it out when he was bloated, thinking we would only do it as a last resort.  We also worried that by taking it in and out often he would lose enzymes and nutrients he needed in his stomach.  The bloating episodes could come on in an hour or so and go away during a feeding or another time just as fast.  Sometimes they would be all day and sometimes just a few hours.  They were usually accompanied by bright yellow bile coming out of the g-tube when we were decompressing before feeding.  We never got answers to why this was happening.  Their best guess was that the button was irritating the inside of the stomach causing things to bleed and the blood was irritating the stomach which cause bloating. 

We are not on medicine for any of these issues and we haven't had a bloating or reflux night episode in months.  We thank God for this and continue on.  During this, in the middle of January I started introducing real food through Luke's g-tube.  By late February I stepped up the food big time and he has been doing great with the food.  I stopped pumping in June and ran out of breast milk in August and Luke has had no problem on all cow's milk.  I will do a separate post about Luke's blenderized diet even though this was going to be a feeding post, I realized it is a post all unto itself.

Luke's g-tube and feeding history Part 2

So in September (Luke is now 7 months old) the valve on Luke's Bard button broke and anytime you opened the button stomach contents came spilling out.  This was not good as he was losing stomach acid and valuable enzymes.  We tried to work with it and be really quick about putting the feeding tube in and taking it out and closing it when we were done but it was not going well.  We took a fast trip down to the surgeon and got it replaced with a Mic-key button which we would be able to change out ourselves, which proved to be very beneficial in a couple of months.  The Mic-key button sticks out more from Luke but not enough to make any difference it seemed to Luke's daily lives.  Now getting the correct extensions to go from the button to the feeding syringe for the Mic-key button was very difficult.   In the hospital it seemed that almost every time we ordered new extension tubes they sent up ones for a Mic-key button and not the Bard button.  So I was thinking that extension tubes would be easy to get for the Mic-key button.

However, getting the correct connections and lengths were the tough part.  They come with strait or 90 degree ends at the button and the other end can come with and without a medicine port.  They also come in two different diameter tubes.  We used the 90 degree thin tube when we were putting just breastmilk through it but when I started putting my real food blenderized diets we needed the strait end to help it move through and the strait end (bolus) tube is a larger diameter.  All the reference numbers for these tubes are really close together and I had to do a lot of trial and error with my durable medical equipment (DME) company.  The people ordering at the DME may have no idea what your equipment really looks like so you need to give as much description as possible and if you can find a reference number somewhere that helps.  However, be ready for trial and error.

We started with the medicine port top it didn't stay on the bottom of the syringe very well and we had LOTS of messes.  Also the medicine port would just come open.  When I started ordering the strait bottom larger tubes I realized that we could get the non medicine port top which fits very snugly on the syringe.   I would recommend the tip without the medicine port to everyone.  We usually put medicine strait into his g-button with syringes that fit directly into the button.  These syringes are hard to fine but you can ask for them at your pharmacy or your DME.  We ended up with some for awhile that had a twist tip that we just cut off with a box cutter and then washed the syringes before use.

So we were smooth sailing g-tube wise for a couple of months (breathing and health wise is a different story and got crazy in here but that will be a different post).

Luke's g-tube and feeding history Part 1

At birth Luke didn't seem to be sucking, or swallowing, and so they put a tube down his throat to get some good nutritious breastmilk down to his tummy.  He did great on breastmilk but his breathing did not improve and becuase of the trach (and ventilator) and aspiration risk and with Moebius children having trouble swallowing and eating they put in a g-tube when Luke was about a month old.   His first g-tube was a Bard button.  The Bard button has a low profile, it is a lot thinner than the Mic-Key buttons) and we liked it.  The downside is that if something breaks on it you have to go back to the surgeon to get it fixed.  They told us this button could last from 1-3 years and we thought that Luke would possibly not need a g-tube by then.  It's a 3.5-4 hour drive down to our surgeon so we weren't really wanting this button to break.  A few weeks later he wasn't gaining as much weight as he should and so they brought a dietitian/nutritionist in to see what he needed.  Since I he was eating breastmilk they assumed that he wasn't getting enough calories and so said they wanted to add some formula to the breastmilk.  I was devastated and mad.  But I didn't know as much as I do not, or even a couple weeks later, and so I said okay since I wanted my son healthy.

So begins my battle with nutritionists.  Well this nutritionist came back 3-4 days after we started adding the formula to his milk.  During these 3-4 days I carefully watched his weights that were taken ever night.  They wanted him to gain 25-35 g every day.  Well he had been gaining 30-40 g those 3-4 days.  However the nutritionist said that he still wasn't gaining enough weight and she wanted to increase the formula to a higher calorie one.  I was freaking out and asked how she came up with that since every day he had been gaining enough weight.  She said that she hadn't taken the last two days weights into consideration but she had averaged the weights of the past 10 days which is what she does to evaluate weight gain and he still wasn't gaining enough.  Okay does anyone else see a problem with this.  She is using the past 10 days weights to determine if the formula Luke had been getting for 3-4 days was working of which she only had a few days of data.  So I pointed out to her that she can't use the past 10 days since he hasn't been getting formula for all those 10 days.  She has a before average weight gain and she has to take just the weights since the addition of formula including the ones she hadn't figured in yet to see if he was increasing.  I told her he was doing great with weight gain now and the numbers should show that.  She took her stuff and said she would be right back.  When she came back she had her statistics figured correctly and didn't think Luke needed the higher calorie formula.

About a week or so, I don't quite remember, Luke's vent settings were changed around to help him with his breathing more and then he started gaining weight too fast.  So after 14-16 days of formula addition it was removed.  However, it was only removed becuase I noticed the large weight gains and requested the nutritionist come back becuase I wanted to remove the formula.  I am not sure when she would have come back and even if she did if the formula would have been removed.

So back on track with just breastmilk we left the hospital when Luke was 3 1/2 months old.  Which since then I have realized is a minor miracle for a vent baby.  Before he left Luke had been getting some granulation tissue around his stoma site.  We were told that it is normal for the stoma to develop granulation tissue, which I think is when tissue is trying to grow to close the open hold and exposed skin in the hole created by the button.  We tried putting a split sponge under the button and having nothing under it.  On the day we left they decided to put silver nitrate on it, they just took at stick with silver nitrate on the end and touched it to the granulation tissue.  The tissue turned gray/black and then fell off and after a day or two his stoma site looked great.  We were glad it was taken care of with a pain free easy method.

Luke left the hospital with plaster casts on and his last weight without casts was a day before he left.  They also took a weight, with the casts on, the day he left.  We had to change the casts every week so we took our scale and weighed Luke while his casts were off every week.  I called in a number of the the cast weights to pulmonlogy.

When we got to our first pulmonoloy appointment Luke had just gotten a new set of casts on but they weighted him anyway becuase it is their procedure.  I did give them the no cast weight of that day and some others they did not have.  When the nutritionist came in we asked if we can eliminate one of Luke's night feedings.   We were also looking for a possible food increase since it had been over a month since he had an increase.  When the nutritionist came in she said she didn't want to increase Luke's food becuase he was gaining 50 g per day.  I was surprised but we moved on and she went out to figure out the numbers of how to eliminate one of the night feedings.  While she was out I figured did the math and he had only been gaining 25g since he left the hospital not 50 g.  Something was wrong here.  So when the nutritionist came back I asked her how she figured 50 g and she was figuring it based on cast weights.  I informed her that his casts in the hospital were very different from the ones he got out of the hospital as they had more time to work on them and that each week the casts were different and that is why I had been giving her no cast weights.  Also she was using the weight they got at the office just then which was a cast weight when the casts were fresh and wet so they weighted quite a bit more than a dry cast.  She seemed to not really care that she was using cast weights and didn't really think it was that bad of a thing to be doing.  Ahhhhh!  She did say that she wouldn't change what she was doing since 25g was still within what they wanted.  She told me that if I wanted a food increase before we came back in 6 weeks that I would have to call the office.  I told her I would be calling, and I did a couple of weeks later. 

From here things went along pretty well for the next couple of months with feeding (increasing the amount of food every so often) and the stoma site had a little granulation here or there but nothing that stayed to long.   Our next big hurdle was going to be in September when the valve on the button broke.

Real food for real people

Real food for real people... I have chosen to feed my son, who eats by g-tube, real food blended up.  I have heard many stories of speical needs kids greatly improving when moving from formula to real food diets.  Luke hasn't know any different and is doing just great.  Its not really that hard.  The hardest part is getting the nutritionist you are working with to get on board with you.  Here are some resources I have found helpful.

Blenderized Diet group on Yahoo Groups
Super Baby Foods by Ruth Yaron (Yes this is for babies who eat by mouth and are "normal" but has great nutritional info, recipes, how to blend, store, use fruits and veggies, and how to do it all in a small amount of time.)
Homemade Blenderized Diet Handbook
http://youstartwithatube.blogspot.com - a blog I recently found that I haven't even gotten to all the info yet)
Me - I love to talk about it so feel free to contact me.

An interesting note is that while at the Moebius Syndrome Conference a nurse that used to be in Australia said it was the norm to give blenderized food to g-tube fed people in the hospital.  Awesome for Australians.