*there's eating and drinking

Big news about Will's feeding tube...we aren't using it!

After weeks of struggling with a nutritionist that refused to budge from her recommendations, I made an appointment with Will's pediatrician. I prepared a lengthy case with multiple talking points on why we felt using Will's feeding tube didn't make sense anymore. Fortunately, all I had to say was "If we can all get comfortable with Will's weight being low, then I think he can maintain it by eating on his own." His pediatrician immediately agreed. I didn't even need the tissues I had close by in case the conversation got so upsetting that I ended up in tears.

It was a good time to start because Will had just entered the 5th percentile for weight, and you might remember that he is almost always in the less than 3rd percentile for weight.

How did we do it?
We just fed him. We stuck to the basic schedule he has always had and still offered food and drinks in the way it was ingrained in us. Meals at 8am, 12pm, and 6pm. Snacks at 10am and 3pm. I still add extra calories to food whenever I can, but the kind of foods he eats are typical of an almost 3 year old.

How did it go?
The first week was awful. Periodically we give him a week-long break from his appetite stimulant because he develops a tolerance. The break helps it work better. He was due for that break the same week we made a change. As a result, I think he lost 2.5 lbs. He looked sickly but we stuck with it. If the new plan was going to fail then we needed it to actually fail. That was my complaint about the way we had been feeding him - it was a constant exercise in keeping him from getting too small, without knowing IF he would actually get too small. Also, the definition of "too small" is a vaguely defined phrase. 

When he started taking the appetite stimulant again every day things looked better. He literally looked better so we just kept at it. Sometimes we would chant "Eat! Eat! Eat!" or use other creative tactics. We didn't check in with the doctor for a month. I actually don't remember what his starting weight was vs. the 1 month checkup weight, and I think that's the point! I'm very grateful that his doctor didn't want us to keep a calorie count. It was her idea to be very free about how we went through our day. He is still what people would consider skinny but his height is good.

I'm so grateful to his doctor because she also was cooperative with my request that we not give Will anymore Pediasure. This is the formula with complete nutrition he has had since he stopped getting breastmilk and preemie formula. I don't like Pediasure. I don't have a good reason to not like Pediasure, but I just don't. It's thick, it's sweet, and it's just a weird and unnatural thing to feed your child. Will's doctor clarified that Pediasure and his feeding tube were actually two separate issues - since often children with low weights drink Pediasure for the calories. All I could say to that was "But I hate the Pediasure". So she said to go with milk! What a difference it makes to be heard!!!

In that first week with very little eating and lots of weight loss, not only was the missing medication for appetite a factor, so was milk. Even though he has had plain milk several times with seemingly no problems he just wasn't drinking very much of it. So the solution was to mix it half and half with Pediasure. We had the huge month's shipment anyway so we might as well use it up. That has worked really well for him. It feels more like a weaning and the extra calories are nice too.

At the one month mark, Will's doctor felt it was going so well we could proceed with the same plan. When I told her we were mixing the milk with Pediasure, she said he may be having the same problem with milk many kids do - they just don't like the taste. She suggested we try easing Will into it by offering it consistently. So every day at lunch he drinks plain milk. How much? Who knows! I haven't kept up with it. It has been tempting to micromanage it, especially when you are TRAINED to do things in a precise way for a long time. But I relish not having to measure (or keep syringes and extensions washed for that matter)!

Eventually we hope he likes milk enough to stop the Pediasure completely.

What is the deal with Will's appetite?
I don't know. But I can tell you this, it's still not great. Eventually we will try withholding the stimulant.

What happened to Will's nutritionist?
Who knows?!?! She never contacted us voluntarily,  we always contacted her when it was time to make a change. Now we have guidance from another source so there has been no need for her. I have to say that Registered Dieticians have difficult jobs and a lot of knowledge that I can't begin to grasp. (I was shocked at the amount of math they have to do!) Obviously they have helped Will. But we have not had access to any on a local level that were willing to listen to me. In the beginning, they didn't need to listen to me because I didn't know anything about Will's health or what was best for him.  Following their plan closely in the beginning was not a mistake, but since their plan eventually stopped being what was best for him I'm glad we decided to go with another opinion.

How much does Will weight now?
I actually don't know! 25 lbs probably? He is weighed weekly at his nursing/daycare but I haven't asked what it is lately. Since the doctor doesn't want reports between his appointments with her I don't either. I feel sure he is again in the "less than 3rd" percentile. But his development in almost every other way is very good so I am fine with that. Before I had that proof that these other areas were good I cared more about weight. But his brain and body are clearly getting enough nutrients now.

On to other fun things!!

*Halloween - Will is going to be dressed as Superman.

*His favorite morning and afternoon activities are spotting school buses, ambulances, and fire trucks. We count the school buses and sometimes he starts over once we get to three. I don't know why.

*He is a good listener. We have warned him to be careful around our dog so often that he will frequently approach her and announce, "I'm going to be careful with Peaches!". All he wants to do is put his hands in front of her face so she will lick them...but after the 8th time she is usually tired of that game.

*Third Birthday - Will is excited about his birthday this year. He often mentions the "three candles" that will be on his cake. He likes for us to remind him that we will sing the Happy Birthday song to him and then he will get to blow out the candles.

Pretty soon we will have a THREE year old!!

*there's Feeding Tube Awareness week

Feeding Tube Awareness is a great website with info for families like ours. They are hosting Feeding Tube Awareness week this week.

Today they suggest we talk about

"Why my child has the tube they have now - a highlight on the medical conditions that require tube feeding."

Will's feeding tube is due to 3 factors - prematurity, a congenital heart defect, and an oral aversion. Many kids with just one of those things have feeding tubes...so having all 3 basically guaranteed it for him. Here's why: 

Prematurity -

Will was born so early that he wasn't even expected to eat for awhile. He was given an NG feeding tube (meaning through the nose and down into the stomach) within a few days of being born. Any preemie in his predicament gets the same. Sometimes when it is time for premature babies to learn to drink from a bottle they have a hard time learning to coordinate the suck/swallow/breathe pattern. This was true for Will, but it is also where his heart becomes relevant.

Congential Heart Defect -

Even if Will had been born as a full term baby his poor heart function in those early months made it exhausting for him to eat. Sucking was as tiring for him as running is for us. After taking a few drinks we would stop him so he could rest...and he would be panting. He wasn't able to keep up with his own desire to drink. Also, the instances that he did drink were influenced by his oral aversion.

Oral Aversion - 

Will had a lot of bad mouth experiences in his early months. He was intubated 6 times by the time he was 2 months old and he was subjected to various other kinds of medical intervention over and over every day. This defenselessness made him very choosy about what he would let in and around his mouth. Another cause of his oral aversion was reflux. This made it painful to drink. Sometimes otherwise healthy kids with reflux develop an oral aversion. And they too, need a feeding tube to survive. 

After several months of unsuccessfully trying to learn to drink while getting fed with his NG tube, Will had surgery to place his G tube which is much better for long term use. After many months of feeding therapy he is now able to eat and drink a lot...sometimes even most...of his food and liquids every day! We still use the tube several times a day so he will keep his feeding tube for awhile.

I just learned about another really helpful group called The Tube Fed Foundation. They can be found at www.mygrowbutton.com. Cute website name!

*there's week 2 of the appetite stimulant

It's working! Will was weighed Monday which marks 10 days of him taking the new medicine. He was 22 lbs exactly. Will has been heavier than this before but as I mentioned recently he lost some weight due to him being sick for awhile. He also doesn't eat as well when we're traveling. New environments are so much fun that eating is no longer his first priority.

He has continued to finish off quantities of food that are not typical of him. Sometimes it is only 8-10 bites of something but in the past that would have been 3-4 bites. Not an average 2 year old yet but it is more than double for him! Just seeing him eat ALL of something, no matter how small is so new to us. A whole cereal bar. A whole chicken tenderloin. Replenishing a finished cup of milk. Emptying a cup of snacks in the car.

The nurses at day care say that he eats during meals AND if anyone is eating near him at any other time of day he asks for their food too!

He has become a scavenger.

And we're only at stage one of the dosage.

Insert standing ovation {right here}.

Other notable things about Will's eating:

*he spoons up the salsa at Mexican restaurants as if it were soup
*he loves pizza and pasta and peppers as much as his Daddy
*he likes foods that his Mommy only hopes to like one day. Pesto flavored hummus for example. I mean, I'll eat pesto but I don't really like it.
*he will help salvage a meal that isn't going well by cooperating when his mother resorts to scooping peanut butter out of the jar with a spoon
*he finished his I-need-Ranch-dressing-on-everything phase over the summer, thank goodness
*he calls yogurt "Dora"
*he has no idea that the Dora he eats is so rich and delicious because I stir Carnation Instant Breakfast into it to give it more calories.
*he doesn't really care much for sweets or ice cream (so far)

 

 

 

Will eating recorded by Kristine Neeley Photography in Franklin, TN

*there's day 1 of the appetite stimulant

First, part II of the month of check ups: last week we saw the pediatrician again. It was an uneventful trip - we just got clarification on the wheeze we hear sometimes when Will has a cold or virus. He has an inhaler with a spacer that he loves. Sometimes he pretends to give himself a treatment and he even demonstrated that to his doctor. She was given the job of pretending to press on the inhaler to make the medicine pretend to come out.

At the end of the week we checked in with the GI doctor. He gave us the prescription for the appetite substitute as predicted. He also mentioned Will's pediatrician. He has a new son and said he chose the same pediatrician after seeing what good care she gave Will!

Will has a really great pediatrician. Since he has a lot of appointments I probably know her better than any of my own doctors. She takes everything we say very seriously and if I have a complicated question she calls me to talk. Since we moved it takes almost an hour to get to her office which is really inconvenient, but right now I wouldn't dream of turning his care over to someone else. There will be a day that Will doesn't need as much attention as he does now and by then I might be ready to switch to a local doctor. Maybe. But I doubt we will find another one with a Choo-choo like this:

After we left GI we went to the NICU to see if one of Will's primary nurses was working. We have met up with her a couple of times before - a few times when he was in hospital rooms on other floors and once in the cafeteria. This time she had us meet her in the NICU. This was our first trip back inside those double doors. I found myself smiling as I walked down the long hallway with Will in his stroller, snacking on Goldfish crackers and drinking Pediasure from a cup. It was nice to know that we were coming back to a place with a lot of difficult memories in a MUCH better time in Will's life. She was thrilled to see him so happy and eating!

She also told us about this baby that recently left the hospital after being there for OVER A YEAR!! I often think that even in our worst times there is always someone that is coping with something more difficult. Well, this baby is the latest example of that. Will spent his first Thanksgiving, Christmas, and New Year in the hospital but at least he was home for his first birthday!

Now for the feeding news: the appetite stimulant is actually an antihistamine that has the side effect of increasing appetite. After only one day we can say we've definitely seen an increase in what he is eating. Breakfast and lunch were about the same, with a slight increase in bites. But his 10 am snack and dinner were definitely bigger. He ate a whole cereal bar by himself for snack. Normally he would only eat about a third of one. And for dinner he ate a half a peanut butter sandwich AND many spoonfuls of the diced tomatoes from my taco soup. He started out eating the meat, corn, and beans too but once he got a taste of the tomatoes he couldn't be stopped. Since I don't like tomatoes I think this could work out really well for both of us!

*there's the month of check ups

The results of Will's 2 year developmental testing from the Vanderbilt NICU Follow Up Clinic

Chronological Age: 24 months 2 days
Corrected Age: 21 months 11 days

Weight: back to the less than 3rd percentile... 
 22.27 lb (<3rd%ile chronologic; 3%ile corrected)
Height: 31.9 in (4%ile chronologic; 11%ile corrected)
Head Circumference: 18.64 in (17%ile chronologic; 23%ile corrected)

Bayley Scales of Infant and Toddler Development
Cognitive age equivalent: 24 months
Receptive Communication age equivalent: 22 months
Expressive Communication age equivalent: 23 months
Fine Motor age equivalent: 27 months(!!)
Gross Motor age equivalent: 23 months

The narrative part of the assessment says that all of his results are within a normal range but since his ability to talk could improve with therapy a speech and language evaluation was recommended. Luckily I have had Will on the waiting list for that for a couple of months.

I had suspected that Will's fine motor skills were at least a little advanced but didn't really have a way to compare. Good or bad, it is nice to have something formal to confirm what we thought was true. In summary, he could gain some weight and speak more clearly but he is GREAT with his hands and is just as smart as a 2 year old should be!

A few days after this assessment we went to Will's 2 year well check with the pediatrician. Unfortunately I had to hear "I'm concerned about his weight" from a second doctor in less than a week's time. Starting a few weeks ago, with the help of Will's feeding therapist, his dietitian has agreed to be a little more aggressive in weaning him from his feeding tube. That has helped him eat more at meals but there was a major decrease in daily calories from the formula that he drinks. The fact that he maintained his weight after the decrease was a good sign, but when there's no gain and even a small decrease the alarms go off in the heads of the professionals.

Since this feeding stress can be trying, I'll point out the bright side for us all to remember...
he has never needed a different, more difficult kind of feeding tube
he tolerates feeds (that means he doesn't vomit several times a day...anymore)
he doesn't require any daily medications (right now)
we have the gift of good health insurance

he is willing to try the food we offer him
and
he will eventually eat!!

A partial month's supply of his current formula, Pediasure 1.0.

His upcoming appointments:

 

Next up is Dr. Arboleda in the GI clinic...

*there's his favorite drinking helpers

An update on Will's feeding progress - he is drinking so much more lately. For most meals he was drinking either 0 or 5-10mls per meal in the past. Just so you know, 5 mls is about a teaspoon! As of last week he suddenly is drinking more! He has been known to drink 1-2 OUNCES at one time now!

So here is a run down of what we use and how they help. First, a disclaimer: the feeding therapy recommendation is that his cups need to be very free flowing and not have flow-restricting valves. Those are usually in kids' cups to make them spill-proof. So if you are looking for a cup that doesn't make a mess you will need to ask someone else...I only have experience with the messy ones!

The Take and Toss 5oz Little Learner Sippy Cups are the ones we usually use.
Pro #1: This brand has interchangeable parts. The top of this cup also holds the snack cup top and the removable handles that come with the Take and Toss 7 oz Sippy Cups with Removable Handles. Will liked the handles at first but they are really difficult to get on and off for me (Con #1). Now he grabs the little 5 oz cup easily without the handles and I think he prefers it. These are perfect for people like us that are keeping track of how has been drunk after each meal because there are measurements on the side like a baby bottle! (Pro #2)  It is really hard to see the numbers depending on the color of the cup and liquid but you can do it. The small "snack cup" size is perfect for Will. Remember...these are not spill proof cups!(Con #2) They are sometimes listed as such and I'm sorry to say that is just not true! They are really inexpensive at less than $2 each. (Pro #3) Since Will uses the spout to practice chewing with his new teeth we will be needing some new ones soon. Maybe then we will graduate to some with cartoon characters on them!

Another cup that I hoped and still hope to like is the Born Free Drinking Cup.

It also has the measurements listed on the side and has interchangeable parts with another cup, the Born Free Training Cup which looks almost identical but has a very different spout. One is to help babies transition off the bottle and the other is their version of a typical toddler sippy cup. Will has enjoyed this cup a few times but then seemed uninterested, so I put it away for awhile. It does have a flow restrictor which Will doesn't need, so I'm saving it for possible future use.

It went against my I'mnotgoingtobuyeverycuponthemarket plan but the Tommee Tippee Explora Truly Spill Proof Straw Cup was a completely un-researched impulse buy. I didn't include a picture because it doesn't deserve it. It is spill proof; it is also practically drink proof. I can't drink from this cup. I even handed it to Chris to see if I was doing something wrong and he couldn't drink from this cup. Afterward I looked online at parent reviews and one said "My tongue actually hurts from trying to make this cup work." Amen. Despite them not being insulated, I think I will be trying the Take and Toss or the Ziploc Straw Cup when the time comes for straw cups. I haven't tried Ziploc yet but their lids seem more secure. And when he needs a bigger one I'm thinking about the Munchkin Mighty Grip. I'm pretty sure it doesn't have a flow restrictor either.

I think the unfortunate Tommee Tippee purchase came from false confidence after a surprising success with the Earth's Best Organic Yogurt Fruit Smoothie. (just to clarify- this is not a cup but an eating milestone!)

We were in Nashville between doctor's appointments and I was looking for something at Whole Foods anyway so I grabbed one and took it with us to lunch. He LOVED it. Despite it being thick and having to suck it through a short but wide built-in spout, he couldn't get enough of this. His favorite thing is to put the cap in his mouth, taking it off and putting it back on the pouch without any hands. He still hasn't tired of this game. One day he must have been super hungry because he downed the whole 4 ounces at once and didn't even need my help holding it. We tried to show the feeding therapist the next day and he squeezed this one by Ella's Kitchen in a way that made it explode onto his face and into his eyes. That was a screaming disaster. We regrouped and tried again at home and he is back to liking them in a supervised way.

Now for the cup that helped him make progress - the Nuby No Spill Cup with Super Spout! It is definitely my favorite cup for him right now. It leaks a little, but not much. I think it works better for him now than when he was younger because the spout was a little bit too big. It releases liquid with gentle pressure (accomplished with a bite down) and the handles are secured to the lid. The handles being secure is very important, because that is the difference in the cup I recommend and the cup I DON'T recommend...the Nuby No Spill Grip 'n Sip Cup. Ease of drinking from this one is irrelevant because this cup breaks. Easily. Will broke 2 of them during their first use. How can a cup for a toddler not withstand a collision with the floor?

For a taller version of the GOOD cup I would get the Nuby Super Spout Easy Gripper. But be warned that another Nuby cup I don't like is the No Spill Easy Grip Cup. Although the names are similar and the cups look the same, the silicone lid on the latter creates a strange vacuum when drinking. In short, if you want a Nuby go with the Super Spout and whether it says Easy Grip or Easy Gripper.

Some day Will is probably going to read this and ask why on earth I thought anyone would want to know these things. I'm not sure anyone does. But even though they are disguised as product reviews, these are milestones and snapshots of our life. It's not just a cup to me!

*there's that tube

In February when I was writing about Congenital Heart Defect Awareness Week there were families celebrating Feeding Tube Awareness Week. I don't know why it surprised me to learn that there was such a thing. I have mixed feelings about the tube so I guess people like me are the reason there needs to be an awareness week. My avoidance of talking about Will's tube has probably kept everyone from understanding what it has been like for us. I'm glad there are people that celebrate their lives with feeding tubes but I haven't been able to do much of that yet.

Here is some of my frustration: it is one thing to be born with a medical diagnosis, but a feeding tube is something that doctors decide to do. It is a solution to a problem. Don't get me wrong, it was the right decision for Will. My problem is that when the original problem is solved we are left to figure out what to do. On paper it looks like we have all the help we need:
a surgeon
the nurses in the surgery office
a pediatrician
a few visits from a home health nurse
a gastroenterologist
a nutritionist
and a speech-language pathologist for feeding therapy.
We have had those typical resources plus a home health company for monthly supply delivery and a long time friend of mine/SLP that will answer my questions any time (thanks Jill). But the effectiveness of this "looks good on paper" help is all over the map. And unfortunately Jill can't move in with us and take care of this for us.

My reality has been many, many phone calls and appointments. But despite all of this constant communication I still feel lost most of the time. I remember asking Will's pediatrician, "Who is in charge of his feeding tube?" I think it is sad that I even needed to ask that question. We were at home with a baby and very little instructions and we were wondering who was supposed to be helping us? The answer was even worse: "I think you and I are." Although we know a lot now, at the time we was not qualified to be in charge of that tube. And although we get an enormous amount of attention from the pediatrician she lacks the specific experience of the daily ins and outs...so basically she and I are Will's feeding tube triage service. We are obviously getting it done in our own time but I don't think this is good enough. For example, I once had a question about how to keep Will from getting tangled in the tubing while sleeping. Our solution? Ask another parent. Where did I find most of the parents with this knowledge? The internet. Do you see what I mean now? My help is coming from untrained (however experienced) strangers on the internet?? I will be forever grateful to those that have reached out to help me. And I am happy to do the same for others in our situation, but with all due respect to them and myself - there has got to be a better way!

There seems to be a new awareness with parents that the long term developmental affects of tube feeding and the lack of solid solutions for feeding tube dependency aren't getting enough attention. Again, the doctors are doing the right thing because they are keeping kids alive with these tubes. But once the kids are ready for oral feeding like Will, it doesn't seem like sufficient support is out there. I don't know what sufficient support is but for starters, a better answer to the "Who is in charge of his feeding tube?" question would help. In the meantime, the phone calls and appointments will continue and I'll keep utilizing these families with experience.

I've seen that many people in the middle of living with temporary tube feedings are struggling and frustrated with how to care for their child. (I say temporary because I believe we would settle into this life much differently if we knew it was permanent.) One huge obstacle is that every child is different and the best way to help them is almost impossible to predict. But there also seems to be a gap in the medical field. A team approach is good, but it seems to me that one key person is missing. I don't know what we would call them, and I'm guessing a new advanced degree program of some sort would need to be invented to create them. Then the insurance companies would have to agree to pay for them. Maybe I'm wrong and the current system is as good as it will get. But I still believe it could be better.

There is good news. This situation is looking up for Will. He will eat. Just not as soon as I wish.

I have added a link under the title of this site for feeding tube and therapy information. I complied the list with permission from other bloggers that have also done their own gathering of resources. Through this chain I hope someone finds something that will make their experience at least a little bit easier.

If you don't have a feeding tube in your life and want to understand it better there is a website I recommend: www.feedingtubeawareness.com. Go straight to the For Friends and Family page and read the whole page. Feeding Tube Awareness also has a great Facebook page. Many other parents there (from all over the world as a matter of fact) have said they also felt they were sent home with these tubes without a clear vision of how it will end. Or even what daily life will be like. Traci, the creator of the site, does a great job of collecting videos and experiences to share and has created what I think is the #1 place for filling the basic information and support gap.

*there's a count

Number of teeth Will has now = 5

Number of times I have left Will's feeding pump at daycare (on a FRIDAY which means we would have to feed him by syringe all weekend) = 2

Number of times Will's nurses have saved me by arranging to get the pump to us = 2

Number of times Chris found the feeding pump on the side of the interstate at night in the cold (long story) = 1

Number of times we have tried to go out to eat with Will and he vomited everywhere = 1

Number of chicken nuggets Will has stolen from other children = 1

Number of times Will has started to dance spontaneously while eating = countless

Number of times Will has given the food he is supposed to be eating to our dog = countless

I think those numbers sum up our current feeding situation. :)

*there's more food

This is how Will used to pass some of the time during "meals".

  Then there was some of this.

 Next came this.

Literally so happy about this he is singing to the heavens.

Look at what he can do now!

I have trouble knowing what the next step should be with food. I think this is because Will is our first child and I don't have the experience. I have spent ages walking around the grocery store trying to find something that is close to what he already likes but different enough that it introduces him to something new. 

Good example of this: 

graham cracker > chocolate graham cracker > cinnamon graham cracker > Goldfish graham cracker > Teddy Grahams > graham crackers with larger and larger amounts of any kind of condiment on them 

Once he does that he has gone from liking just one food to more than 5 foods.

Bad example (at least at our house): vanilla wafer > Vanilla Oreo Cakesters

I thought that would be good bridge between the vanilla wafer and whipped cream. Will disagreed. And honestly I was a little offended that he crumbled it up with a look of disgust on his face. Anything made by Oreo should be revered.

That picture above is from the day I learned he doesn't want everything cut in small pieces anymore. He asked for my banana and used one end as the handle while he chewed on the other. I didn't realize that the difference in a sliced banana and a whole one is how it feels when we touch them. Once it has been sliced it becomes sticky and he is still not crazy about sticky or wet or really soft things. What does work is adding one of those to food he already likes. I put vegetable flavored cream cheese on Veggie Sticks

and sunflower seed butter on carrots...which went so well he began to rub his hand in the sunflower seed butter and then cram his entire hand into his mouth (see "singing to the heavens" picture above). Adding new tastes and textures to foods he already considers "safe" is called Food Chaining. 

The little mountain of whipped cream you see in the last picture is a standard addition to meals with sweet things. I encourage him to dip his other food in it and usually by the end of the meal we're smearing it everywhere. It is clear that he still doesn't really like it. He will get a handful and squeeze it through his fingers though and he likes when I say "Give me five" when I've covered my palm with it. Then we get to laugh when it splatters on his face. :) 

I have thought about keeping a list all of the foods he likes, but now it would be hard to keep up. He is getting closer to eating every day. Drinking is another story but that will happen in time.

*there's a place for more syringes

Of all the places in the world to get good syringes for tube feeding, I never would have thought to look at the Squirrel Store! We get syringes every month from our home health company and sometimes the pharmacy. But the plungers with rubber tips just don't last very long. So I've learned from other moms that the syringes with O rings instead of rubber tips are more durable and can be found here.


Also, it might interest some parents to know that there is a sort of Special Needs Underground for these things too. It is where families swap medical supplies that they can no longer use and the recipient pays for shipping.

A month's supply of bags for Will's feeding pump.

This on my mind because I recently got a month's worth of Pediasure for Will and soon learned that his team of doctors wanted him to try something else to see if it would help his frequent spitting up. It looks like it's working so we now have a few cases of unneeded Pediasure. We have been the recipients of donated formula in the past so I know exactly where to take ours. But when he's done with tube feeding we will have several things left over that we've received from the home health company that will not allow us to return them. We were told from the start, "If you don't use them, you can't send them back...donate them". I may list the things what we have left over here, but if you need something now here are some places to look:

Oley Foundation - Tools for living better on home IV and tube feedings

Facebook - Medical Supply Exchange

There are similar things in online communities for specific medical conditions, for example:

www.mitoaction.org - scroll down to The Trading Post

www.trachestomy.com - go to their message boards and look for Supply Swap

I hope this helps someone! It has definitely kept me from embarrassing myself at the grocery store. I saw a man buying preemie formula one night and wanted to chase him down to offer him the leftover cans we have at our house. But I knew I could find those cans a home in a way that doesn't scare people. So send me a message of you need any Smiliac NeoSure!

This is one of our syringes full of a homemade formula that I have made for Will a few times.

*there's feeding therapy

An update on Will's eating is overdue. Here's the current situation:
*4 daytime feeds that are pumped in over 30 minutes. The volume changes frequently but today it is 130 mls (that's about 4 oz) per meal. I know that is a tiny amount but that is what his little tummy can hold.
*a continuous night feed that runs over 5 hours at 34 mls per hour. That is changing also because we are transitioning to no feed at night. This is probably the most exciting thing I have heard in a very long time! The night feed is not only inconvenient but also not the safest thing in the world. It can come unhooked and pump liquid into the bed with him, the tube can wrap around him, the pump can malfunction...it is just a worrisome event that will be such a relief to not have to do any more!!

Will getting his night feed back in the NG tube days.

*we offer him baby food, finger foods, and/or food from our plates at every meal. Sometimes he likes it but sometimes he doesn't.
*his best oral feeding week was a few months ago. I had stopped offering him anything for several days because it was frustrating me to see him to push that little spoon away EVERY SINGLE TIME. When I offered again (on a Sunday) he ate 7 bites! I stopped then because I didn't want to push my luck and needed to end on a high note. For the rest of that week he ate an average of 7oz of baby food a day! We had to run to the store to stock up! The next week he didn't eat nearly as much and we're still working towards those large amounts again.

 

 

*his phases tend to follow an unofficial weekly pattern. Some weeks he will eat bite after bite. Some weeks he will not let us get a spoon near him. It is really nice when he gets happy and kicks his legs with excitement when he sees me get his food. He doesn't eat much of it but all that matters right now is that he likes it.
*he sometimes will drink water from a sippy cup. We aren't going to try to teach him to drink from a bottle at this age. He has had a few sips of milk, Pediasure, and juice but he really only likes water. The cups we use don't have valves (either a Nuby with slits that open with pressure or a Take and Toss with holes) so the liquid can fall into his mouth easily. This makes me glad that we still haven't found an area rug for our living room...Will likes to use sippy cups like drum mallets and after banging them on a coffee table several times liquid is everywhere.
*this kind of eating means a lot of things get thrown away. Luckily (if its not baby food) we sometimes finish it for him. That can be a problem because if its really good we will eat it all. I'm not buying any more Pirate's Booty or Chester's Puffcorn for this reason. But it was SO GOOD while we had it around.

*his very favorite thing right now is Ritz crackers. He also likes pretzels, Cheese Nips, chocolate graham crackers, Slim Jims, and some other things, but he can't get enough Ritz crackers. Bananas are his go-to baby food.

His feeding therapist says he is doing fantastic because he is progressing in the types of foods he wants. She reminds me over and over that our current goal is for eating to remain pleasurable. We are succeeding if that is the goal. By the time he is ready to be a total mouth eater (a phrase I just made up) he will be comfortable with all types of foods - hard things, things that melt in his mouth, things with little pieces that are more difficult to control in his mouth, etc. When his weight gets to a good place we'll be able to adjust the tube feedings to give him a chance to get hungry.

Tooth update: His first one on top is coming through this week!

If we ever get a picture of the teeth I will be sure to put them here!

*there's things we won't miss

I'm happy to update everyone by saying Will is feeling better now. He and I both were sick during the past week but it is so nice to see him happy and crawling around again. Not only is he back to himself, he is better than ever. Great mood, less spitting up, eating a little from a spoon, making more noises, getting closer to talking, and crawling, crawling, crawling!

As we approach Will's 1st birthday, I have been thinking about these things that we no longer worry about.

*Spells
*Turning blue
*Apnea monitor

*Wires keeping us from walking around while we hold him
*Trips to the ER
*The NG tube being in the wrong place and causing aspiration
*When will his OHS be scheduled
*Weaning off the ventilator
*Visiting the hospital (We did count the mileage on our taxes though.)
*Getting clean clothes to the hospital
*Washing our hands over and over with that abrasive hospital hand soap


It's so nice to have those things out of our way!

Things we hope to add to the list soon:
*Surgeries
*Medicines
*Feeding tube
*Feeding pump
*Pole that holds the feeding pump
(Stubbing your toe on it is really painful.)
*Continuous night feeds
*Phone calls with the nutritionist about feedings
*Thinking about tube feedings
*Anything related to anyone's feeding tube ever :)

*there's another month of healing

Boo-boos everywhere!

Including another mosquito bite on his cheek:

His new G tube is on the right. It's also sometimes referred to as a Mic-key button. We hook a connector tube to it and then the feeding bags that we've always used attach to the connector tube.

Right now Will has 4 daytime feedings that drip in over the course of a half hour. At night he gets what they call a continuous feed. 30 mls per hour drips in over a span of several hours. That is very slow and keeps him from having large amounts of food in his tummy at any one time. We are in the process of weaning him off of the night feed and back to getting the bulk of his nutrition during the day. Which makes sense because that is when people eat! We hope he can tolerate the change and not spit up too much. 

Thankfully we've had a few home health nurse visits since getting the G tube. We learned how another family created a refrigerating system for the feeding bag with an insulated lunch box. We have LOVED this idea! I had been setting an alarm to get up and put more milk in the bag halfway through the night. Now we can fill the bag entirely and sleep all night like he does! 

 

This is a picture of the projector pictures on the ceiling in his room that we put on while he's falling asleep.

And here is our newest prized possession:

A portrait of Katie by family friend Debbie Patrick. 

It's perfect!

In regular baby news...I think Will is having a growth spurt and is in the very early stages of teething. No drool or sign of a tooth. But his hands are in his mouth constantly, he's grumpy and he is sleeping more than usual. Last night he slept for 11 and a half hours! And had his usual naps in the daytime. One day recently his nap was 2 hours long which is a pretty long nap for Will. As for the teeth, he makes us laugh when he tries to rub his own gums. Rather than moving his arm back and forth he will make a fist and leave it in front of his face. Then he shakes his head really fast! It's funny looking but we love it. 

I'm sure this isn't true, but this feels like the first regular baby news we've ever had about Will. It's completely unrelated to a surgery or a doctor or a problem. Will is fussy. And he's supposed to be! A sign of normal!!

 

Our FIRST family picture!!

This was after our little friend Karsyn's baptism last weekend. 

I have no idea why we waited to long to have a picture made together.

Thanks to Bethany for being our photographer!

*there's a beautiful face!

Will's G tube surgery went "perfectly"! He now has a tube free face!

Napping in the holding area before surgery.

After getting the okay from the surgeon, we took out his NG tube for the last time! We made it ceremonial with pictures and celebrating. A nurse came to check on him and said, "Oh his tube is gone." I told her, "We took it out. It was a BIG deal."

 Daddy removed the tape so quickly he didn't even notice.

What is this thing you keep putting in my face Mommy? I'm going to grab it!

The familiar surgery waiting area. It's pretty empty on a Friday afternoon.

Relaxing afterwards in his room. He found something to grab yet again!

His new G tube is surrounded by tape and gauze right now so I'll post a picture of it once it's healed up. They are sending a nurse to our house tomorrow to help take off the bandages. I can't wait to ask questions about how to use the new tube. We have had a lot of messes during the learning process.

We always chuckle about him being marked as a "Fall Risk" since he can't even walk yet.

Here is a little reflection on how Will's time at the hospital has spanned all the seasons:

 Here was fall:

 

This is summer:

Here was winter:

This is summer:

I just noticed how big it looks from the outside:

The tall portion on the left is the doctor's tower where Will sees the cardiologist, GI doc, and the NICU follow-up clinic.

I was trying to kill time with all of these pictures. My excuse for not having any springtime pictures is because that was when he was there for heart surgery and there was no extra time to kill.
 

Back at home!

Beautiful face.