Project Pack-on-the-Pounds

Remember our GI checkup 4 weeks ago? The one where the doctor told me Sadie was losing weight and too skinny and we had that talk with the nutritionist about giving her more high calorie foods?  I was given suggestions to add things to Sadie's diet like chicken, potatoes, pasta, oil, whole milk, etc.

The thing is, when we got home, I was all gung ho for this...and I made Sadie throw up like everyday.  Brian told me I needed to slow down and ease her into this diet change.  I hate when he tells me what to do...especially when he's right!  But, after about a week, we found our groove.

First I started adding oil.  Sadie gets 1.5-2 Tbs of Olive oil added to her food everyday.  That right there is an extra 180-240 calories.

Then I realized that the yogurt we were giving her was only 60 calories a cup, and I knew we could do better than that!  I found Kroger brand yogurt that is 190 calories per cup!!  Do you know how hard it is to find HIGH calorie foods?!  Most people was low fat and low calorie yogurt.  So, finding 190 calorie yogurt was like hitting the jackpot!

Then we started giving her a little whole milk with each meal.  Soon we had a goal of 12 syringes of milk a day (it's doable), which is 10 ounces.  That is another 187.5 calories per day.

I started making her peanut butter in the vitamix.  Just peanuts and oil, and I can make it a little thinner/runnier so it's easier to mix into her fruit puree.  And since we're trying to add texture to her foods, I put some Life cereal in her fruit puree and peanut butter, which doesn't add a lot of calories, but adds some starch.  At our house we call it Sadie's peanut butter sandwich.  She gets this meal everyday.

Sadie's daily diet that she's settled into looks something like this:

8:30/9:00ish we give her 6oz of tube food.  This can be anything from leftovers of our dinner the night before to just milk and some veggies.  Or sometimes I mix her some Cheerios with milk and banana.

11:00/11:30ish she gets yogurt and some water.  This is also when I make her peanut butter sandwich so that the cereal will be soggy when it's time to eat it.

1:00/1:30ish Sadie eats her peanut butter sandwich (there is oil mixed into this), with 3-4 syringes of milk.

3:30 She eats something hearty.  Sometimes it's rice pudding, sometimes it's black beans with rice and bananas, sometimes it's veggies and quinoa.  Whatever she has, this also has some oil mixed into it and she gets 3-4 syringes of water.

Sadie doesn't eat again until 6:00.  She gets her second dose of medicine at 5:15 and we have to wait at least a half hour until she eats again.

6:00 Sadie gets something high in protein.  Usually she gets chicken and potatoes with vegetables and quinoa.  She likes this.  I bought some organic, cage free chicken tenders for her and boiled them up.  Then I put them in Food Saver bags individually and froze them.  We seem to always have potatoes that we can't use fast enough, so it's been easy to boil some potatoes, make some brown rice or quinoa, steam some frozen vegetables, then add it all to the blender with some milk.  It's pretty hearty, and she usually eats a lot at this time of day because she hasn't eaten for quite a while and is hungry.  I also add a little oil to this meal and give her 2-3 syringes of milk.  Sometimes I can finish up her 12 syringes at this meal, sometimes I take it easy and don't push it.

8:00 If Sadie still needs some more milk, I give her 2-3oz of fruit with some oil and the rest of her milk. If she has had all her milk, I might give her a little yogurt.  I don't give her a lot of food at this time of day, but I try to give her something with protein so it sticks with her through the night, because she's not going to eat again for 12 hours.

My goal in Project Pack-on-the-Pounds isn't just to fatten Sadie up, but to feed her body good, nutritious food in the process.  I don't want to clog her arteries or fill her body with chemicals (otherwise I'd just give her the formula through her tube that the doctor recommends!).  So, below are some of my "recipes."  I know that there are many special needs kids who struggle with gaining weight.  I also know that many of them don't want to eat or struggle with eating more than Sadie.  But in case you can use these, here they are...

Rice Pudding - I bought Sadie some vanilla pudding Snack Packs, then I added cooked brown rice, some whole milk and a little cinnamon to the blender.  She LOVES this.  I tasted some too, I'd eat it, it's super yummy.

Sweet Potatoes - 1 small yam, and an apple, cubed and steamed.  Add these to the blender with a little of the cooking water and a small amount of cinnamon.  You could even add a grain to this if you wanted to make it heartier, or add some protein.

Oatmeal - Oatmeal is so easy, so good, and you have endless variety possibilities.  I cook up some oatmeal, sometimes enough to make 2 or 3 different batches at a time.  Some things I add are: brown sugar and cinnamon (I use a lot of cinnamon because it aids digestion), apples and cinnamon, dried fruit (if you put raisins or dried cranberries in with the oatmeal while it's cooking, it'll reconstitute them and make them easy to blend), anything that you might eat in your oatmeal, your child will likely eat also.  I make sure it's blended well with milk.

Fruit purees - This is just like making a smoothie.  We buy frozen berries at Costco, so we always have some strawberries or blueberries.  Then I mix in a banana usually and whatever we have... peaches, mangos, etc.  That vitamix will blend ANYTHING, even with the peels on, it's amazing.

Quinoa - Cooked quinoa in vegetable broth (Sadie's like me, she's not a huge fan of quinoa, but if it's cooked in vegetable broth, she'll eat it), then I add either frozen mixed vegetables or carrots only.

This seems like we don't give Sadie a lot of vegetables, but we've found that the easiest way to give her veggies is to put them in her tube food.  Her tube food often has spinach, cucumbers, broccoli, kale, green peppers, etc.  We often get this is our bountiful basket (it's like a food co-op) and can't eat it fast enough before it goes bad.

And because I'm obsessed with Sadie gaining weight, I've been weighing her at home regularly.  The last time we weighed her was Sunday night and she weighed over 31lbs!!!  She has gained 4lbs since we saw the GI doctor!!  It sort of sucks that I have to get her heavier while it's harder and harder for me to carry her.  But I'm glad all of this is working and I'm excited to see what Dr. Wendy says when we go to weigh in in October!!!

Traveling with Blenderized Food

All my sealed food (so far) ready for a trip to Texas!!

So, if you've ever thought that maybe I'm a genius, you suspicions just might be confirmed through this post!  (I'm humble, I know...)

We're traveling to Texas at the end of this month and ever since our vacation was scheduled, we've been talking about how to handle food for Sadie while we're not at home.  She can only eat purees and still gets at least 1 tube feeding a day.  We did consider bringing along the blender, since we'll be in a condo and have a full kitchen.  But then we sort of agreed that we'd just buy the packaged baby food when we get there...Sadie can eat it, but it can also be watered down and put through her tube if necessary.  The thing is, that packaged food is EXPENSIVE!!  Sadie' probably can eat 2 packets at a time, at $1.29 each, 5 times a day?!!!

No thank you.

I'm not very good at math, but I can figure out that it'd be cheaper to bring our own food...so how do we do that?  I got my little Mommy-brain wheels turning and I was thinking that I need a way to package our homemade food the way the store packages their food so that it's preserved and we can take it out with us in the diaper bag all day, etc.

And then it hit me!  Food Saver machine!

We don't have one of these, but my neighbor does, so I started asking her questions.  She told me sure it'll keep in the fridge for 5 or 6 days, and it'll be fine for a few hours in the diaper bag!  Excellent.  So, we borrowed hers (although, after this, now I want my own!!)  If after this, you think this might be a good investment, I priced them at Target around $75 and the bags are about $20 for like a million of them.  Actually, not a million, but it's basically a big roll (the one I bought is 20ft long) and you can cut the bags to whatever size you need.

Here's what a Food Saver looks like.  It's small and easy to store.

These are the bags I bought.  I think they were like $17.99 or something at Target.

So, the plan is to freeze my purees (or tube food) in ice cube trays like I usually do.  Then, I can vacuum seal the cubes in single-Sadie-serving sizes (5-7 ounces), and throw them back into the freezer.  Then what we'll do is put all the vacuum sealed frozen baggies in our suitcase, and check them on the plane that way.  When we get there they'll probably be partially thawed, but that won't matter.  We have a fridge and they'll be eaten within a week anyway, so we'll just make sure we get them in the fridge as soon as we arrive.  Then each morning as we're packing up to go out for the day, I'll throw however many we need in Sadie's insulated lunch bags with ice packs (which I can also make with the food saver!) and we'll be good for the day!!

This is all the food I made ahead of time and froze into ice cube trays.

Then I cut the Food Saver bag to the size I wanted

I sealed one end of the bag prior to filling it...this takes about 15 seconds.

I put the desired amount of cubes into the bag and then hit the vacuum and seal button.  It sucks all the air out and seals it for me. 

 This obviously takes some planning ahead.  And we may not actually bring the entire amount that we'll need for our trip, but so far I have 21 meals vacuum sealed and ready to go!  I also did a little experiment.  I left one of the vacuum sealed packets out on the counter for 4-6 hours to see what would happen.  After all, it's going to be in my suitcase for that long, right?  There ended up being a little air, because when the food defrosted and changed shape, there was extra room in the bag.  So, then I put it in the fridge for 2 days after leaving it out on the counter.  And when I opened it and gave it to Sadie it smelled fine and she seemed to like it!  ...and I used yogurt, so you know if yogurt can handle that, anything can!!

I also called TSA (THAT was an adventure in and of itself) because I was worried that I was going to go through all this work and then have them open my suitcase and throw it all out anyway...and then we'd be back where we started, buying expensive packaged food!  The lady on the phone wasn't immensely helpful, but she did tell me that I could put a cooler in my suitcase and that I might want to do that to try to keep them as cool/frozen as possible while traveling.  She also told me that certain foods will trigger security, even in checked bags, and if that happens they'll have to open my suitcase.  I asked her if that happens if they'll throw out the food in question...of course she didn't know.  Why would I think that TSA could be helpful???

So, there you have it...my genius idea.  I will be back to let you know if it works, and how it goes.  Has anybody else done something similar when traveling?  Or have you done something different that worked?  I'd love to hear about your adventures with tube food!!

Making Baby Food

When Sadie was little and just starting to eat pureed food, we were all gung-ho about making her food from scratch...and we were good at it too!  I reconstituted prunes and apricots, I boiled apples and baked bananas, and we thawed frozen berries.  But we soon realized that we just didn't have the right equipment for some of it.  We used the food processor, which was adequate, but it didn't liquify apple peels, or corn, and we had to be very careful with blueberries.  Plus the food processor was hard to clean, which sort of made me unmotivated to make the food after a while.

cooking the apples makes them easier to blend in the food processor

Then Sadie got the tube, and she was on tube feeds of formula for a long time.  We didn't feed her much at all by mouth, so we just bought baby food at the store.  I discovered those Happy Baby, Ella's Kitchen, and Plum brands of organic baby food that was sold in the pouches (mainly at Target of all places!)...and our addiction was born.

Sadie has been eating by mouth 5 out of her 6 meals a day for the last month.  Brian is convinced that we alone are keeping that Target baby food section in business.  The other day I came home and told him they had all sorts of new things to choose from (four bean casserole, and a vegetable bake!), he told me they probably see an increase in demand based on our purchases alone and so they have added to their options!

Seriously though, we're gonna go broke if we continue like this.

But now we have the Vitamix blender.  We got it because we decided we were no longer going to give Sadie formula, but real food.  We chose the Vitamix for a number of reasons: 1. it's rated safe for making tube food, 2. it will pulverize even flax seeds and raspberries, 3. They KNOW they're better than giving our kids formula so they offer a medical discount.  We were back in business!!

However, because I haven't felt well, and been tired, and unmotivated, we've still been buying Target baby food...until tonight.

I have been very discouraged by the lack of variety of "dinner" type purees.  There is a Chicken and Quinoa Casserole, and a Turkey and Vegetables one (which Sadie doesn't like), which is why I got so excited for the Vegetable Bake (which smells like ratatouille... are you impressed that I can spell that?!) and the Four Bean Casserole.  These new ones are vegetarian and Sadie likes them a lot!  So, I did some asking around and a little bit of research and I decided I'm gonna try to make my own "dinner" puree.  I mean, fruits and veggies are EASY...but Sadie needs some hearty meals with some good proteins in them.  And for now, I don't mind feeding her meat (even though we are vegetarian...and by we, I mean Brian...and me when I'm not pregnant!).  We have a lot of good veggies and things in our house right now, so we threw in the crockpot the following mix and we're gonna let it cook all night, then throw it in the Vitamix in the morning.

Broccoli
Cauliflower
Onions
Garlic
Quinoa
Tomatoes
Chicken
Water

Sounds good, right?  Well, maybe you and I wouldn't necessarily like it pureed, but it might be good as a stew for dinner!

Then we went crazy with the fruits.  Fruits are awesome to mix and match, and then they can be added to yogurt (and yogurt is cheap), and then the meal is a good source of protein and fats and still offers all the vitamins of fresh fruits.  We have a crazy variety of fruits in our house right now, so let me see if I can remember all the mixtures we made.

Strawberry
Pineapple
Kiwi
Banana

These are a couple of fruit blends we made tonight

Mango
Kiwi
Banana

Mango
Lime
Mint
(This one was STRONG!  So, I mixed it with some vanilla yogurt)

Apple
Strawberry
Banana
(with a little orange juice)

Apple
Cinnamon
(I used too much Cinnamon, so I mixed this with some honey almond yogurt...so yummy!!)

No way could we have done all this without the Vitamix!

When we used to make Sadie baby food, we used the ice cube tray method, because she would eat about 2 cubes at a time...now she eats 6 or 8!!  But the ice cube trays really are still our best option for freezing right now.  Tomorrow, they'll be emptied into baggies to make room for the casserole.  However, some of our ice cube trays have broken or gotten lost, so a couple of blends went straight into the fridge and will be eaten tomorrow.

These trays offer only about 6 meals...but if we mix with
yogurt or a cooked and blended grain, we can probably stretch that to
10 or 12...which will last us 2 days instead of 1!!

Hopefully this weekend I can shop for some more food with Sadie in mind and keep working on making her food.  The store bought food is still a good option for throwing in the diaper bag and using on vacation (since it doesn't need to be kept cold), so we'll keep some of that on hand for back up.  But for now, I hope we can reduce our Sadie grocery bill by a lot and start getting our money's worth out of that Vitamix!!

Any ideas for baby food blends I can make?  I think next we're gonna make some 10-bean soup mix with veggies in the crockpot!

Sadie's mastered the puffs

Since I've gotten pregnant I'm totally grossed out making blended food for Sadie. (ew, just talking about it is grossing me out!) And while it's sorta been a curse, it's also been a blessing...because I've been feeding Sadie more by mouth.

First thing in the morning when Sadie wakes up, it's like her brain hasn't fully woken up yet and eating is too complex of a task. But she needs the calories and the blood sugar boost. So, I've been giving her milk in her tube, and we've been practicing eating puffs. To me, it kind of feels like she's having a big bowl of cereal!

Eating something this solid is pretty complicated, much more complicated than purees. She has to chew, she has to manipulate an object in her mouth in order not to choke, and she has to swallow deliberately. And for a long time she spent a lot of energy getting it OUT of her mouth (because that's basic instinct). Now, she's figuring out how to really eat them. She can even crunch, but I'm not sure she likes to crunch, it's kind of startling for her. I'm hoping this is a jumping off point for some more things like whole bananas (ie. not mushed), toast, maybe even Cheerios!!

Anyway, here's a video, enjoy!!

365 project - #2

I titled this picture "fat and happy"

Sadie's NG tube was put in on May 22, since then she has gained almost 5 pounds!!! Lately, she has gone from exclusive tube feedings (4 times a day) to mostly oral feeds. A month ago, Sadie would barely eat 1.5oz of pureed baby food. Today she downed 6oz of banana-pumpkin-vanilla yogurt like it was nothing! She is really getting to be a good eater! However, she still won't drink, and because of that I am thankful she has the tube.

Look at those love handles! Don't you just want to SQUEEZE them?!!

365 project - #1

I joined a group called 365 project and the aim is to post a picture every day for 365 days. I thought it'd be fun to post a picture of Sadie every day for the next year. Tomorrow she'll be officially 1 and a half (18 mos!!). What a great time to start!

Here's the first one. I call this "yogurt face"

And here's the link if you'd like to follow me on the 365 project: Christie's 365 project

Update on Gastroenterology

For those of you who follow me on Facebook, you know I've had a HUGE struggle this last week making a decision about Sadie having an NG tube placed. I went back and forth multiple times a day even about should we do it, should we fight it, what are the advantages, what are the consequences, etc.

I had a good talk with a mom at Foundation for Blind Children (FBC) last Friday. Her daughter has a G-tube, which is the kind where they surgically attach a tube into the lining of a child's stomach. She showed me her daughters and explained it all to me (this is actually her second child to have one) and it really made it much less scary.

Many moms via this blog and on Facebook have told me that even though they were scared at first, or even though they hate that their child relies on his/her tube, they are really thankful for it. These moms all say that having the tube as a backup helps with peace of mind in knowing that their child is getting what they need, even if he/she can't take it orally. And many of them have noted that it is also a big stress reliever.

I posted on the P.O.P.S.I.C.L.E. parent forum. (P.O.P.S.I.C.L.E. is a local organization that deals solely with families who have children with eating issues. I joined a long time ago in anticipation of these kinds of issues, and I'm glad I did because now I have this resource at my fingertips) and got a lot of good advice from both sides of the coin.

And I had a good, long talk with Sadie's feeding therapist (whom she hasn't seen for about a month because she's had a family emergency and needed to be out of town). I told her my biggest concern is creating a problem where we don't currently have one. I'm afraid that, for Sadie, having something constantly in the back of her throat might make her reluctant to eat. But Nancy told me that most kids adapt really well to having that tube there and that she is not worried about Sadie having problems with it. Plus, she mentioned that if after a couple of weeks, we're seeing it be more of a problem than a solution, we can just remove it. She told me she thought it'd be a good idea, if the doctor recommended it, to place the tube. She is more afraid of drinking being so stressful for Sadie that she creates an emotional aversion to the whole process of putting anything in her mouth...I guess I never thought of it that way.

So, we went back to GI yesterday. And we saw the Nurse Practitioner, not the doctor (I think he was on vacation or something), and the same Nutritionist/Dietician was there. They were both very impressed with Sadie's progress in 12 days. She has gained over a pound and is doing really well. But, they both told me that in order for her to grow, they'd still like to see her drink more. They told me we could keep doing what we're doing, but they'd recommend the tube just to ease some of the stress on us all. This is kind of what we knew and expected them to say.

I told her that we are prepared to place a tube, but we want to make sure that most of what she eats and drinks is still being taken orally. The nurse and the nutritionist both said that is the best way to do things, and both really felt like this would be a very temporary thing (we feel that way too). So, when the tube is placed, they'll give us a plan. We'll have a goal of something like 4 ounces of liquid in 20 minutes and whatever she can't drink in that time, will go in through the tube. That way we are always trying by mouth first. And who knows, maybe we will hardly use the tube at all during the day, and it'll just be used at night to make sure she actually gets enough.

Sadie has to be admitted and we will plan to stay one or two nights in the hospital in order for all of this to happen. This is so they can place the tube, then keep us to make sure she is okay with it and that we're trained in how to use it and replace it and maintain it. They want to also do a swallow study while we're there. We won't probably do this for a couple of weeks because we're leaving town this weekend, then next week Sadie and I will be staying at Ryan House while Brian is out of town still. Then I have graduation and the events that come along with that. We'll be admitted May 22nd at the earliest.

Thank you for all your prayers. Please continue to pray. We are going to really start working on Sadie's ability to drink. And hopefully in a couple of months the tube can come out and she can do it all on her own!

Feeling Guilty?

Once we started giving Sadie enough to eat and drink she turned into a different baby. She went back to sleeping 10-12 hours at night. She started taking 2+ hour naps (in her bed). She was happy. And the medicine for reflux was working too and she was able to play on the floor by herself, she even started rolling over this week and being happy on her tummy!

And I started feeling guilty.

You know how you watch those documentaries about under-developed countries and they show you pictures of orphanages full of malnourished children? That's how I imagined my baby must have looked. Had she been crying all day lately and waking up at night because we're starving her?! Because she's so dehydrated that she HURTS?! What a horrible mother I am!

But then my dad reminded me that she couldn't HANDLE more than we were giving her. That first day after we saw the doctor we tried to give her the amount of calories and liquid he recommended before we started medicine, just to establish a baseline. Sadie had a really hard time with it. She puked twice, and would never take more than 2 ounces of liquid at one time. (which meant we had to give her that much like every hour AT LEAST to get to 24 ounces) She couldn't do it. The next day, when we started medicines, all of the sudden she could handle much more. Now, after just 5 days, she is taking 4-5 ounces each time (and even sucking some of it out of the sippy!) with no problem...which makes it MUCH easier to get to 24+ ounces a day.

We see the doctor again in 4 days. I am hopeful that we won't be getting a tube this time...but it'll always be hanging over our heads, I think. So, keep praying for Sadie. She needs to be able to drink on her own, and tolerate more and more in one sitting. I will give you an update on Tuesday!

PS. we weighed her nakey the other night and she was actually OVER 20 lbs!! At the doctor's office last week she was barely over 18. Mind you it's a different scale, but still...I can't wait to see what she weighs when we go in next week!!

Sadie's weigh in

Today was Sadie's weigh in appointment. She passed. With flying colors.

Some background...at Sadie's 12 month appointment she had fallen off the charts in the weight category. She weighed 17lbs 6oz. She wasn't just going down in percentiles, I think she had actually LOST some weight from her 9 month appointment! We were told, "come back in a month and weigh in, let's hope she's gained." It's actually been about 6 weeks, and we've learned a LOT about Sadie in these 6 weeks.

1. Sadie has no problem eating. She does, however, having an appetite problem. When she's hungry she can pound 4-5 ounces of food! But 3 hours later, when you'd think she'd be hungry again, I have force her to eat an ounce and a half. This leads me to believe her GI isn't moving like it should.

2. Sadie still pukes little spit-ups once or twice a day. It's not like a gigantic exorcist puke where her head spins and her eyes shoot out lasers. It's more like a burp and food comes up with it...like spit up, but with apricots and yogurt, so it smells worse. This is more evidence that leads us to believe her GI isn't moving like it should.

3. Sadie eats generally 10-12 ounces a day (this is a lot less than a normal baby her age) and about 350-450 calories (again WAAAAAY less than a normal baby this age). She nurses, but not a lot. And most of her calories are probably from oils, pure fat.

4. Sadie is dehydrated. Since she's not nursing a whole lot (mostly by her choice *sad lip*), she should be drinking water, but she still struggles with the sippy. When she gets it, she gets it. She can suck and swallow just like nursing if she really tries. But most of the time she doesn't try. So we resort to squirting it down her throat, which leads to choking, which can sometimes lead to puke...then we've just defeated the whole purpose of it all in the first place. Maybe Sadie needs her water thickened? But I'm not sure if that will encourage her to drink. This problem still baffles me.

5. Sadie will not eat unless it's just after she's woken up from a nap. We now have a pretty consistent schedule to where she gets 3 little naps (usually less than 30 minutes) throughout the day. These serve to reset her and to calm her enough that she can eat without too much struggle. I'm not sure she's really learned what hunger is, maybe she doesn't ever feel hungry? She doesn't seem to ever indicate when she is hungry, and it's really hard to feed her if she hasn't cat napped first. Again, I'm not sure how to solve this problem.

Today was the first day in over a month that I didn't write down every ounce of food or water that Sadie has eaten. It felt so good. I didn't even add oil to every meal. I didn't stress about it at all. She drank more water in one sitting than she has ever (almost 2.5 ounces), and she ate all four meals that I fed her without a problem. I don't know how much she ate, I don't know how many calories it was, I'm not even sure what time it was that I fed her. And it feels so good to say that. I can now relax a little about this.

So, how much does Sadie weigh? Today she weighed in at 18lbs 13oz!! She had gained about a pound and a half!!! The doctor was so happy, we were so happy, it was a victory for special needs mommyland. But we're still going to go see a GI doctor. We don't know why she's not hungry, do we need to push things through her system? Or do we just need to stimulate her appetite? And we don't know why thinner foods/liquids are harder to swallow. So, tomorrow I call GI and schedule an appointment. Dr. Wendy prepared me. And I know a little what to expect. She's totally supportive and always stands behind my decisions of what I think is best. She understands our reasoning behind our vaccination decisions and our medication decisions and she understands that we don't want to put a bunch of artificial preservatives in our baby just to get her to eat or gain weight. So, she's sending us to GI, but she's not abandoning us. She even told me that I can call her and talk anything over with her before I make a decision about a medicine or test or procedure or anything. I wish everybody had a pediatrician like Wendy!

Thank you everyone who prayed for us. Thanks everyone who supported us and encouraged us. I feel like we've reached a milestone...on to the next one! (car screaming?)

Sadie's eating and gaining weight!

At Sadie's 12 month checkup, the doctor told me Sadie's too skinny. She had gone from a little chubbers, to skinny mini in about 6 months. At 6 months, she was just above the 50% in weight. At 9 months she had dropped to 25%, and by 12 months she was at zero. That's not good, doctors don't like to see that, especially in special needs children, ones who are already on the radar for feeding problems. At 9 months, when Sadie started dropping, Dr. Wendy called our state services coordinator and requested that we get the ball rolling on feeding therapy...we didn't actually see the feeding therapist until the week before Sadie's 12 month appointment.

As good as I know they are for babies/kids/people who really struggle or just can't eat, I am deathly afraid of a feeding tube. It would require surgery, and maintenance, and screaming, and it would break my heart a little. So when Dr. Wendy told me to come back in a month to weigh her, and if she hasn't gained she's going to send us to G.I., I freaked out. I know she didn't mean it to be, but to me it was a threat. A challenge not to go down the slippery slope toward G-tube.

It's hard work for Sadie to eat, definitely. And it's hard work, as well as a lesson in patience, for whoever is feeding her. But we tackled the problem head on, and immediately started feeding her 3 meals a day. And soon after that, we started keeping track by writing down what time she ate and what she ate each meal. We saw a pattern develop, she was eating at about the same times everyday. So we tried to stick to it. Then we started weighing her food and trying to get it up over a certain amount everyday. That prompted the addition of a meal, so now she's up to 4 meals a day. Then we moved to counting calories, and now I'm even writing down when she nurses. This might seem like a lot of work, but it's a lot less work than what comes with a G-tube...and she's gained over a pound in the last month.

We have our weigh in appointment on March 8, and I plan on bringing our food log with us. I think Dr. Wendy will be happy that Sadie has gained weight. I mean, she actually has a fat little belly and her face is filling out and when you pick her up, she feels solid. I just really hope that as she grows bigger and bigger her eating skills also improve to fulfill her calorie needs. There still may be a G-tube in our future...but we're going to fight it as hard as we can for as long as we can.
Here's a little video of Sadie having her feeding therapy. It's meant to stimulate and wake up her mouth so that she is more aware of it and can use it more efficiently when eating. It actually works really well. You can see how it makes her yawn when we do it though! What a good little eater she is becoming! We are so proud of her!

Long Time No See

So, I know I haven't written here in a long time. I had this goal at the beginning of the year (no, not a New Year's Resolution) that I was going to write 5 posts a week, yeah right. My job has taken over my life. I didn't realize how much of my day Sadie took up until somebody else started demanding that time. But I like my job, and I'm not complaining or excusing myself, just explaining.

Some of you might say, "it's online school, how much is there really to do?" A lot actually. For priding themselves in allowing a "flexible" schedule there is sure a lot of my week that isn't flexible! I have meetings and live classes, and I have to make phone calls and chase down the kids who aren't working. Then there's the flexible part...grading and creating powerpoint presentations for the live classes. This usually gets pushed farther and farther down my to do list and then I end up working all evening...which I don't mind doing, but then bloging doesn't happen, and Brian gets bored, and things don't get cleaned. But a lot of my day I get to spend with Sadie, so I'm busy, but not unhappy.

I have all these blog-post ideas in my head that I want to write about, and I often draft something in my head while I'm out running, but by the time I walk through the door it's like everyone needs me and is so relieved I'm home that I quickly become engrossed in "mommy duties." And then I forget what I was going to write about.

Tonight, however, I'm feeling like a bad mommy, like a failure. And no matter how many times Brian tells me I'm not, I still feel like one. So, I need to write about it. Sadie needs to gain weight, that's what we were told at her 12 month appt (which I don't think I even wrote about!!!) so I have been working so hard to get her to eat. I am tracking her food, I am counting her calories, I am doing everything in my power to get her to eat 3-4 times a day, and it's a lot of responsibility. I am the one who prepares her food. I am the one who feeds her. I am the one who has to take her back to the dr. and be there when they weigh her and have the conversation about seeing a G.I. dr. And ultimately I am the one that will take her to more dr. appts. And I will probably be the one they tell first when they say she's going to need a feeding tube. So, when she doesn't eat enough, or, like tonight, when I force 1 or 2 bites too many and she pukes it all up, I feel the weight of that, and I feel like it's my fault, and I feel like I've failed as a mother.

It's not as often, but sometimes I do still wonder what life would be like with a normal baby. I'll probably always wonder, not so much anymore because I wish things were different, but because I just have no idea what that would be like. I read my friends' facebook posts about going to the science center, or taking first steps. I see pictures of first smiles and sitting and crawling, and sleping, and I wonder if they read my posts and think what it would be like if they were me. Probably not. I doubt they realize how badly I want what they have. I want to take Sadie to playgrounds and splash pads. I want to watch her learn how to crawl and sit and eventually walk. I want to brag about the yummy cookies we baked together or the cupcakes we decorated. I want to show off her craft projects, and write about the funny things she says and does. And I think I'll get all this...I'm just still wading through the muck of unknown, seeing all those posts is like being 10 years old and watching someone else open all my Christmas presents, but knowing I have to wait until next year before I get them.

I don't really know what I'm trying to say. I guess that we've come a long ways, and I don't wish to go back. This has been hard. And I'm sure in another year I will look back again and say the same thing. Does it get easier? Will the car screaming ever stop? Will eating continue to always be a struggle? When will she sit up? When will she stand? Will her vision ever be good enough that she can enjoy the movies or the science center or the playground? Nothing is guraunteed, and sometimes I don't feel strong enough for that reality.

Right now I guess I need to just live in the present. It's good to reflect on the past to remember how far we've come, but as for the future, I should probably just let it come as it will. So for now I will continue to live vicariously through my friends on facebook, holding tight to those dreams I have of doing the things they do. And right now I will be happy that Sadie doesn't need a feeding tube. And I will rejoice in the fact that I have a job that I like and I work with awesome people. And I will do my best to blog more often.

Sadie's 12 month checkup

We saw Dr. Wendy yesterday. Sadie had a good trip to the dr. No car screaming at all...and then she got fussy about when we walked through the door of the building. But it was nothing a little nursing couldn't cure. I love when you're 10 minutes early for your appointment so you think you have a little time to sit down and nurse your baby in the lobby, then they call you back early. But when you're late...then they make you wait. So backwards!

Sadie got weighed and measured and then we went over what medications she takes and how much she gets blah blah blah. When we finally saw Dr. Wendy, it didn't surprise me the first thing she said, "do you believe her weight? Do we need to reweigh her?" Nope. She's skinny.

Sadie barely weighs 18 pounds. And she's been at that weight for about 4 months. 4 months ago it was fine...but everytime we've come back to see the dr. she drops on the charts for weight. At her 9 month appt she went from the 50% to the 25%. Now she's at 0%. The funny thing is, she's so tall she's going up in percentiles in length! I think she's also fighting her genetics. Brian was a skinny baby, and a skinny child, now he's a skinny adult! Sadie is built a lot like her daddy.

At 9 months, we talked about getting speech/feeding therapy involved...which of course didn't start until this week. Now we're talking about getting GI involved. Dr. Wendy says, "only because they have nutrition specialists in that department." There is no talk of a G-tube...yet.

For now we need to beef Sadie up. Wendy wants to see her again in a month to reweigh her. We have 4 weeks to pack pounds (ounces?) on Sadie. We want that weight to increase so that we don't have to go see another dr. So, we're adding oil to Sadie's food. Olive oil, coconut oil, flax oil...did you know these are all about 130 calories per Tablespoon?! That more than doubles a serving of Sadie's food at a meal. She should be getting close to 800 calories a day (according to the internet) and she's probably getting barely half that. It's hard because we can't just sit Sadie in a high chair and give her a pile of cheerios to feed herself. Eating for Sadie is work. And she can do it, but it's work. We're also trying to feed her snacks. She's getting better at eating finger foods (although it's more about mommy and daddy's fingers than Sadie's) and she got these freeze dried yogurt bite things for her birthday that she really likes. She sucks on them and they melt and stick to the roof of her mouth and she works on it and works on it. They keep her from being bored, they get her more calories, and they make her practice using her tongue and facial muscles. So, those are really good too.

Beyond the weight thing there weren't really any concerns at the checkup. Sadie is going to get another vaccine, but I requested that we wait until 15 months as she was a little sick this week. We've all been a little sick this week. We looked at her teeth and talked about how we can't believe it's been a year. We discussed equipment and letters of referal from PT. I told her that now that we have long term care we have respite and everything is free again. And then we said goodbye.

It was a pretty good visit...now it's time to go feed my baby again.

Blessings in Bunches

First of all, I'd like to announce that Sadie slept in her own bed in her own room last night for the first time ever all by herself!! 12 hours she spent in there without a peep...we were worried she was dead. Nope, just being a big girl!

It was a little weird at first and I had a hard time falling asleep knowing that she was on the complete other side of the house. But I have a cold and eventually I stopped listening as hard as I could to the baby monitor and just fell asleep.

I was thinking about it and I think the last time Brian and I slept without her in the room was the night we decided to unplug her and let her go. That was over a year ago!! It feels good to wake up after a night of not being concerned about tossing and turning and having a baby glued to the side of me. I'm a whole new me!

Second, Sadie had her first feeding therapy yesterday afternoon. Her goal is to just make Sadie more aware of her lips by stimulating them and causing her to realize they exist. This will hopefully lead to more babbling, sucking food off the spoon better, and eventually biting and chewing bigger pieces of food. So, she gave us this little rubber nubby thing that we're supposed to stick in Sadie's mouth and rub around her gums before she eats, as well as rub along her lips. Then she had this tiny little vibrator that she put on the outside of Sadie's mouth to stimulate awareness. As soon as our therapist left, I fed Sadie and I was amazed at how well she ate! Maybe she was starving. Or maybe all that stimulation made her want to eat. I don't know, but I did it again this morning and I had the same results.

She is also doing really well with little toddler food meltaway bites. The ones we have now are freeze-dried strawberry yogurt bites and Sadie just ate like 10 or 12 of them in one sitting, which is a lot for her! We need to get some more calories in her, so hopefully this new skill will open up the possibilities for us to do that.

Finally, we went to see the pediatrician today for Sadie's 12 month well baby checkup (I'll blog about that separately) and we had a nice quiet car trip both ways!! Plus she was a happy baby while we were there!! I'm really enjoying this big girl!

First Foods

We've officially embarked onto the world of first foods. My original desire would have been to use the baby-led weaning method, and I'm a little sad that we haven't been able to go that route, but it's really all about exploring and grabbing and baby sticking things in her own mouth. Sadie can't do those things yet. And who know how long until she will, so we instead have started with purees and a spoon.

When we saw Dr. Wendy last week I asked about solids and she mentioned that she thought it'd be okay to start stage one foods. She told me to watch for severe tongue thrusting (like not getting ANY down her throat) that doesn't seem to be correcting itself. This is a sign that she's not ready. And of course we had to really be careful of choking and watch for that since everybody is still hyper-paranoid about her swallowing. (HIE babies have swallowing issues, Sadie seems to have grown out of hers, but nobody is willing to accept that) Armed with what the doctor told us, a high chair, and some fresh pureed squash from the garden, we went for it!


Sadie did really well her first time. She didn't eat a lot, but that's to be expected. She was able to figure out how to use her tongue to swallow...after a few tries. And still most bites end up all over her face! She is pretty cute though when she eats. The next day, we tried again and she ate a LOT more that time. She's doing such a good job!

So, we continue with squash for the rest of the week, being careful not to introduce too many new things at once, just in case! Then maybe over the weekend we'll try bananas. There is conflicting advice as to whether to start with vegetables or fruits for worry that your baby will get hooked on the sweetness of fruits, but bananas seems like a great next try!

I'm working on making my own baby food and have gotten a book from the library all about it. It seems pretty easy, and since I'm cheap, it shouldn't be hard to do, especially as she grows into more sophisticated stuff. We have a food processor and a freezer, that seems to be all we need really. HERE WE GO!!!

P.O.P.S.I.C.L.E. center

P.O.P.S.I.C.L.E stands for Parent Organized Partnerships Supporting Infants and Children Learning to Eat, and it is my latest find in support groups for special needs families (website here). I scoured the Popsicle Center's website and learned so much about eating that I never even realized. We don't have anywhere near the eating/feeding issues many of these moms have (and I pray we never do), but I signed up for their forum because I think I may be able to learn a lot from other moms of children with disabilities effecting their eating.

Many of you know that when Sadie came home from the hospital she was tube fed. Every 3 hours we put the tube in her nose, fed it down to her stomach and then shot a little puff of air through it while listening with a stethoscope to make sure it got to her tummy. Most people just leave a tube like this in instead of re-inserting it every feed, but I didn't want that tube/tape messing up my baby's face. And I think it was better for us to do it this way because I was more motivated to get her to nurse since I hated that tube so much!

This is the night we left the hospital.

The day we pulled Sadie's breathing tube, we watched the nurse stick his finger way down Sadie's throat and she didn't even react. No gag AT ALL. That first night was rough because she wouldn't swallow even her own saliva and everytime the nurse came in to feed her, we also had to suction her. At that point there was talk of setting up suction in our home so we could continue the care. By the next night Sadie seemed to be swallowing on her own and no longer needed suctioning. We were told (and we're still being told) that babies with HIE often will aspirate and end up back in the hospital with pneumonia, so we needed to really be listening to her lungs to make sure they were clear. They have been, and continue to be, clear, and for that we are truly thankful.

I so badly wanted to nurse my baby. I knew breastmilk was an important key to Sadie's health and was convinced that it was even helping her heal, but pumping was getting old, and I had looked forward to nursing so badly that I was heartbroken over the fact that my baby couldn't suck. I started putting the pacifier in her mouth and she would give it a few sucks amidst the biting and chewing on it, so I thought, "what if I just try to nurse her, I wonder what would happen?" Our hospice nurse had advised me against it because Sadie hadn't had a suck/swallow test...and again, she was worried about aspiration.

Of course I had no idea what I was doing, but sought some advice from people I knew who successfully breastfed their babies, and one night in the tub, with Brian there to encourage me, I got Sadie to suck!! I still remember being so happy I cried!! Then I immediately texted everyone I know to tell them the good news!

Sadie learning how to breastfeed.

From that point on we did more and more nursing until we completely stopped using the tube (I think it's somewhere under the bed with kitty teeth marks on it now...we should give it a proper burial). I didn't tell the nurse we had started breastfeeding until we were only using the tube for medicine, and by then she had checked Sadie's lungs a number of times and never heard any fluid (I was so nervous each time she would listen!). But Sadie wouldn't ever take a bottle. We tried and tried, but the same as with the pacifier...more biting and chewing than sucking. Oh well, she's nursing, right?

Now I'm starting to get a little concerned about Sadie not taking a bottle or a pacifier because I'm afraid she has an aversion to anything in her mouth that isn't boob and that when it's time to learn to drink from a sippy cup, or eat from a spoon we might run into problems. It's also hard for me that she won't take a bottle because I don't ever get a break. It might be easier if she didn't scream in the car because then I could go run my errands. As it is now, Brian gives me a couple hours on the weekends to do what I need to do, but if Sadie gets hungry, Brian has to use a syringe or a dropper to feed her. I'm sure it'd be much more satisfying for her to suck, even on a bottle.

Anyway, Sadie starts feeding therapy next week. We have an evaluation on Tuesday and I'm excited to see what the therapist does. Maybe there's a silly trick to get her to take a bottle, maybe it'll be a long process to overcome an aversion to anything in her mouth. I am still going to save the P.O.P.S.I.C.L.E. website...if for nothing else but to be reminded of how lucky we are.