May 31, 2010

Getting your Heart Baby to Eat

My feeding therapy advice:

Let me just throw out a few disclaimers before I begin.First of all, this is what worked for us. It was a learn as you go process...

It was ugly- REAL ugly!

Please proceed with understanding.

Alright.... if you have any specific questions that I did not address please email me- I don't know how much this will help. oh, and I don' t know what is going on with the text, but this was a lot of different entries.

Coming home with baby on NG:

You might as well shave your head for all the hair pulling that will occur due to the above sentence. There are moms who loved being able to push a button and know how much was going into their kiddo. Although it definitely had its convenient perks- I was NOT one of those moms. It drove me crazy to take Mia out of the equation. I was on mission to teach Mia hunger from the moment we started giving her breast milk through a binki trainer.

I knew the odds were stacked against me because she had been intubated so long and her experience with any oral intake was next to nothing.

Ok, go back a few steps…

- When we were in the hospital she had a swallow study which she failed- so my hands were tied until her next swallow study. This gave me time to get well acquainted with senior feeding pump. Tips for feeding pump:

- Fill bag with enough formula so you will have extra at the end. This allows you to push down on the neck of the bag until the formula is almost spilling out, then close the lid. Turn upside down and while squeezing the bag press the release valve in the tubing- this will allow you to prime the entire length of the tube without pressing the slower than molasses “prime” button. Also, it will eliminate air getting pumped into the bag due to any type of movement what so ever. The last thing you need is to be pumping your babies tummy full of air then have them toss their cookies because too much air got in there. Now, the pumps are suppose to stop if it doesn’t sense any formula in the tubing, but we had plenty of pumps malfunction and keep on moving that air right along with intermittent amounts of formula. Some pumps just don’t read as well as others.

- Get as many chargers as they will allow you… we had three. I remember going to one of her check ups… back when we were going twice a week and I thought I grabbed the charged pump. I needed to give her all of her meds, but had no way of getting them or any food into her. Luckily someone was in the homecare office or it would have been a nightmare. Also, they beep like crazy when they are low on battery and will shut off leaving the food in the bag and not in the baby.

-If you change the setting on one pump- change them all. As you are trying to teach hunger/stretch that tummy you have to increase in volume and speed- make sure both pumps are consistent.

* more to come on this

On that same note… Many occasions arise when you don’t need a full feed and you set the pump, then forget. Then realize hours after your baby should have been fed that he/she only received the 15 cc’s that you programmed for meds. This usually happens if someone else turns off the pump (my kids) after the alarm. It is bound to happen, but before you go to turn off the pump change it back.

-If you are putting meds in the feed, mix them with less formula than you need and run that feed to make sure all the meds got in- then add the rest of your formula to finish the feed. Usually, you use the ports on the NG tube to push meds, but post transplant there are so many drugs and their tummies as much diluting as possible. You will learn quickly which meds make them sick. With Mia she would throw up immediately after some meds were pushed… it didn’t matter how slow we pushed them. In this case… ask the docs if you can dilute it in the feed.

How to teach hunger Mia style:

As soon as I was given the green light, aka she passed her swallow study, it was operation lose that tube before her first birthday.

OK- so initially it was binki trainer land- I loaded up more binki trainers than I can remember. We had to teach her how to suck- it was awful! She would gum the binki trainer and we would push a little formula then she would choke, then gag, then lose her feed. Soon I learned the following:

Start the binki trainer right when you start the feed- this way she is associating her tummy filling up with sucking and swallowing the formula.

Having the right formula is key! We started out with the nastiest tasting/smelling formula ever. I tried it just to see what we were up against, and I gagged. I knew we would get no where with that formula. I tried flavoring packets for awhile... but gave up on that. We switched to vanilla flavored Elecare, which worked for awhile, but we finally ended up using the kirkland formula or Similac organic.

Present the bottle as often as humanly possible. The more that nipple is in their mouth, the more comfortable they become with it.

000.. speaking of nipples... we tried all brands. I was kind of a maniac and convinced myself that if I kept switching things, that there was this magic recipe that would make her magically eat. I tried different flows, and brands, and wasted money in the end, but it made me feel better :-)

I always held Mia on my lap with her facing me, well actually she was reclined on my legs, but she did NOT want to be cradled when I was trying to feed her. She wanted her space. I liked doing it this way because she could see my face and I could talk to her and encourage her.

The months were spent trying to speed up her feeds/the amount to stretch her stomach... while getting her to take as much by mouth as possible. The problem was that the pump ran each feed took a long time since Mia's stomach was too small to have a full meal in just a few minutes, and until she was getting her feeds in the time a healthy baby would, she would never be hungry. It was a slow process but eventually we got her to a point where we could start subtracting what she took from bottle from her feed, or run the feed at the same time and turn off the pump minus the feed.

When I started feeding her in her sleep things really picked up. She more or less learned how to eat in her sleep. I sat and sat and sat with that girl with a bottle in her mouth.

I cried

I prayed

I wanted to throw the bottle through the window

I cried some more

I tried again

She was so happy it was easy to get over the frustration.

Then began the sleep feeding. Initially I held her and got her to sleep in my arms then I snuck the bottle in her mouth and she began to eat... and the angels were singing! I held her until she figured out how to hold the bottle herself. That didn't take long because she was almost a year old :-) After that she pretty much took all of her meals in her crib.

I can't tell you how relieved I was when she finished her first bottle during one of her naps. It was a beautiful day!

The rest is pretty much history. Eventually she learned to take a bottle wide awake and her food intake improved slowly over time.

Once we got the bottle down we started introducing more and more foods. Any kind of solid food made her gag, then she would lose all the milk we worked so hard for her to eat. If it could dissolve in her mouth, she could handle it... anything else?... gag gag gag. The gagging let to chocking- it was a NIGHTMARE! We just kept on truckin.

back to NG for a sec

When the NG tube would get ripped out by a couch cushion, or stuck under daddies arm (this happened more than once) or when she would gag it out- we left it out! This was always my trial period for getting rid of the NG.

It went a little something like this:

Tube and Tape were ripped off her face accidentally

I would feed her while she was sleeping

I would pray and pray and pray

Then when she needed to eat again and hadn't had enough that day, I would put the tube back in.

This cycle happened on and off for a couple of weeks...

Then came the one time I took her tube out on purpose for a photo shoot. I needed pictures to put on her 1st birthday party invitation, and it ended up being the last time she had that tube.

CRUNCH TIME: So, after I took out the tube... she did loose a tiny bit of weight. This is discouraging YES! The doctors are never please with weight loss. Bottom line is tube is irritating and ultra bothersome and I felt it was next to impossible for her to take enough with it in. For about 3 days she was only consuming the bare minimum for what her nutritionist wanted her to take. Maybe even a little less... I remember it being a stressful time- I almost put the tube back in multiple times. On Day three she was taking enough all because that tube was OUT! I had to feed her on my lap awake... torture and in her sleep because her tummy wasn't get expanded enough to hold say a full bottle.

My biggest advice is to stick to your guns! You are the mom and you will know if it is working or not. Don't let anyone discourage you! Obviously if they don't gain weight within a couple weeks you may need to go back to the drawing board for a bit, but with our experience it took taking it out and holding our breath and giving her the bottle round the clock to make progress. At her next appointment she had gained weight and I knew the tube was gone for good. Another thing that might help during crunch time is adding calories to the formula. You can get powdered calories to mix in- there are different choices out there. We mixed pediasure with her formula for the extra calories. We didn't do this for long because the doctors didn't want her to "gain too much weight." They wanted her to to stay on her own curve and didn't want her to make a big jump in weight. I definitely could have worked closer with a nutritionist, but there was so much more going on with meds and interactions that I just took on the eating. I knew what I had to do, and had the basic idea of what she had to get to remained nourished... and ran with it.

Oral Aversions:

Our feeding therapist wanted me to awaken her mouth by putting my fingers in her mouth often. I could not do this... I tried, but after living in a hospital... I couldn't. I bought teething rings- the kind that vibrated. I gave these too her all the time, she didn't want them in her mouth, but I kept giving them to her. Eventually she started putting them in her mouth.

I used the little blue baby tooth/gum brushers before meals to prep her mouth for eating. She fought at first but then thought it was funny.

I tried to always sit with her and put something in my mouth and show her what to do, basically give her a narrated play by play. I'm sure if someone was taping me doing this they would get a kick out of my exaggerated chewing while telling her to chew.

I gave her a million different types of simulations. From dum dums to every type of baby food that one mommy could buy. One thing about teaching hunger and coaxing one to eat is that A LOT of food will be wasted... a lot! I would get all excited about a particular concoction I made for the princess only to have her refuse it and my hopes and dreams shattered! not really. Just don't get frustrated when you end up wasting food. I ate a lot of her rejects, but I had to draw the line with baby food vegetables.

Those little mesh bags for fruits were the BOMB. Mia wouldn't put it in her mouth at first... ok... you're going to laugh but here are a few things I put in that bag:

-whip cream, cream cheese, apples, blueberries, vienna sausages (mmmm), oranges, all manner of babyfood, jam, frozen fruits, popcicles, avacados, pretty much anything I could fit it there.

My only real advice for food is TRY EVERYTHING. I swore foods off, then revisited them, and had more success. Beating the NG was a 6 month long nightmare, which only led to another 6 month long feeding frenzie. A majority of that food wound up on the floor. We basically started with only disolvables, then purees (the baby food grinder was used every day) then eventually soft chunks, and full on solids. There was gagging and puking in all stages, which set us back, but she slowly started trusting food. It was frustrating because once she gagged, it was over for that meal. She was insulted and hurt, and didn't want anything else to do with eating. ME EITHER!!!!

You'll learn what foods gag your kiddo, and can avoid those for awhile. I remember giving her spaghetti one night and not cutting up the noodles... WHAT WAS I THINKING?? She had one noodle half down her throat and was gagging like crazy. Poor girly. I didn't think anything of it because pasta is one of her fool proof foods. Needless to say, I now cut up her spaghetti and she loves it.

Give lots of sips water when your feeding... this helps with making sure the thicker foods get down and they are less likely to choke say after the third bit of cheese soup. drink breaks are a must!

About six months ago the only thing Mia "couldn't" do in regards to eating is taking a bite and getting a chunck. She would just knaw on food until she got a piece, or would eat a piece from me cutting it up. I really wanted to take a bite from like a cracker or something. That is the last thing I needed her to do before I felt like she was eating 100% She could eat almost anything, but wouldn't take a "bite." This was probably due to her having 3 teeth.

* Would you believe me if I told you there is nothing she doesn't eat?

*Would you believe me if I told you she has been eating full chicken nuggets (not cut up) for 6 months?

*Would you believe me if I told you I do not feed her anything anymore? I give her her meals and silverware and she feeds herself!! It is every mommy's dream right? Well heart mommy's that is.

*Would you believe me if I told you that she still makes a MASSIVE mess at every meal? yes, you probably believe me on this one. I guess that is our last step and I don't see it going away anytime soon. I still give her lots and lots of variety at meals- this is more of a nutrition paranoia than a calorie intake dilemma.

Just for mom's that may need ideas for foods here is what we fed her once she refused baby foods:

- disolvable baby snacks.. mostly the yogurt puffs- she would eat a whole bag if I let her.

- cooked carrot sticks (with butter)

- GOGURTS (lots and lot of them)

- avocado chunks

- pasta Pasta Pasta... all forms, all sauces, EVERYDAY

- crackers every kind

- cookies (walmart brand) "don't forgets" vanilla wafers

- slices up oranges... she just sucked on them

- sausage (SHE LOVES THIS)

- bacon... her first food... but a big gag inducer... at least for the first couple months

- canned chicken... Costco

- Vienna sausages

- Anything she didn't want I dipped in a yummy dip (ranch) or in cool whip. Sometimes the food remained, but SOMETIMES it got in!

- you can read back if you want through the journey, there were many blogs like THIS ONE that may or may not help you.

Here are some emails I emailed to a friend during the whole process- if you want to read anymore of this massively long post.

Oh, Mia didn't want the bottle in her mouth- so I would give her the binki and when she fell asleep I would give her the bottle. Waa ha ha...I'm so sneaky!! do you want him on the sippy? or do you want to keep him on the bottle? If you want him on the sippy maybe try putting things in it that are delicious- like his formula with some vanilla pedialte or try a flavor packet (I get mine from the hospital and have a million if you want some) or put whipped topping on the nipple- I mean I've tried a million things. I think with the sippy it is more of a slow process because they are not going to get the bulk of their hydration unless they know how to eat in the first place. I think when it is sippy time I will give it to her maybe only at lunch for her to get familiar with and put juice or something yummy inside- then tip it up now and again, but no pressure. I know some women that don't give their babies any toys but sippy cups until they drink from them- maybe I should do this :-) We did visit the sippy cup for a minute. Mia didn't really get it. She gummed it a little, and swallowed what was poured in (because there was no plug) but that's not what we were working on. It's funny, but I changed my strategy after talking to you. I decided to feed Mia while she is sleeping and it is working wonderfully- her "awake time" feeding seems to be improving too. She has been taking four bottles a day with solids- I am calling it good enough. I realize that this isn't a cure all to my feeding issues, but her tube is out and it is working for now. Mia has a gag reflex that we are working on. The therapist told me to get my fingers in her mouth and that would go away. This is difficult because I am such a germ a phob that I don't do it. I let her chew on a lot of toys and hopefully that will help. She doesn't eat anything that isn't pureed finely- however she is starting to eat those little stars that melt in their mouths. I think because of her needs we will probably be on the bottle for awhile...I want to get her to a place where she wants a drink and she wants to eat and I feel like she hasn't learned that need yet. I will re introduce the sippy when I feel like she desires the liquid. Believe me- I think if there was one issue in my life that I wish would just resolve- this is it! I know someday it will, but it is so tiring and frustrating. Yay for the ranch!! Mia is a huge fan of ranch. Our nutritionist told us to give her as many high calorie foods as possible. I dip her baby food fruit in whipped cream and she loves the whip cream. Mia responds well to dressing, creamy soups, she loved the sauce of pork and beans...random. Bascially any thing I am eating that has zero chunks she loves. I made a broccoli cheese soup last night and used the baby food grinder. She loved it! After about six or seven bites she started to do the open mouth gag thing because I had ground up carrots, potato, broccoli, onion, and celery. The cheesy part was getting less and less and I kept giving her bites just to see what she would do. I am also trying to work on that gagging- pesky gagging. Anyway, after she kept gagging on the thicker stuff I could tell she wasn't interested anymore because it was uncomfortable to eat. I rinsed out the grinder and did all cheese with one vegetable and she ate a lot more. I think she gets discouraged when she gags and then refuses to eat. I gave her some cereal and it seems like sometimes it dissolve fine and others she gags. Who knows!! Oh, Mia is a huge fan of bacon... who isn't? I just put a whole one in her hand and let her suck on it. She takes it in and out so I know if she gets a chunk...then I have to fish it out so she doesn't choke, but Mia would munch on bacon all day long. Do you have one of those mesh baggie things that you put solid food in and they suck on? I tried to give Mia some food in it and she couldn't stand the texture of the mesh bag. I put super delicious stuff in it to try and get her loving it- like whipped topping, yogurt, a yummy sugary desert. She would lick it off then try to put it in her mouth and would just throw it away. I pretty much gave up on it because it was driving me nuts. Then, the other day I put a bunch of frozen blueberries in it and just left it on the tray and walked away. When I came back she had the whole thing in her mouth and was gumming it. Now, I put all kind of fruit in there for her to try and she loves it. I thought she would never do it though. What I should have done is just put them on her tray as toys before I ever presented the food. That way she would have gotten used to the mesh. Mia luckily doesn't have reflux- we dodged that bullet somehow (the only one really ;-) She does puke...but it is always because she is gagging on the tiniest smallest morsel of food. Little turkey! I have noticed an increase in what she will take when she is awake now. I think she is FINALLY associating the bottle with getting full etc. I was talking to home health yesterday telling them how I just put her down with a bottle and she drinks it down- and they strongly discouraged that. I told them...well if the tubes out- I have to move in that direction. Mia would never learn hunger if she still had the tube. I figure in a couple of months she will be taking enough when she is awake and then I can just put her down for her nap no bottle...hopefully. Mia will take the baby foods, but she really likes "real people" food. My baby food grinder has come in really handy. I grind up whatever we're eating in all it's salty glory and she loves it. Mia's biggest hang up is sucking.

Yes, the whole eating thing is a big fat nightmare. I am encouraged by the fact that it won't always be this way!!! I had someday tell me..."well she will know how to eat before she goes to kindergarten." WHAT? excuse me, that is like five years away- I'm thinking like six months lady!!! Gotta love the encouragement though.

I don't know if this was helpful for anyone, and there are many details I missed... it has been a long journey, but the details are still fresh. If you have specific questions let me know, and I can try to help you.

One final thing before I go to bed... Mia has perfect cardiac output. I was able to push her because fatigue didn't apply to her. Her angel heart is a strong, fully functioning heart. For many mom's who struggle getting their kiddo to eat this is not the case. Many heart babies do not have the endurance or ability to be pushed the way I pushed Mia. Many of our heart friends are hypoplast babies and
many of these sweet babies have to work extra hard just to oxygenate their bodies. Please keep this in mind... cardiac output plays a HUGE roll! Some heart kiddos get fatigued much sooner and it will be a longer process, but bottom line is...

YOU CAN DO IT!!! I KNOW YOU CAN!! If you need a personal cheerleader- I am your girl! If there is one thing I do not want to repeat it is this and I am incredibly sympathetic for those who are going through it. Good luck!!


The Simmons Family said...

That was great!! We have done all of the above... if only had his perfect heart.. he'd eat like a champ! I love that Mia picked it up!

Owen likes to eat ANYTHING offered to him... he can only do a couple bites though. Thankfully, he has a Gtube and one day, we will celebrate when it is gone!!

Kyle and Alli said...

Great post. Some of your experience is similar to mine and some is so very different! I love that you got her to eat while sleeping...genius! We could never get Grant to drink from a bottle and by the time he had finally passed a swallow study and moved from an NJ to an NG tube, he was almost 10 months old! We found success with straw drinking and the only foods we could get Grant to eat were very strong flavorful foods. Once we figured out that sweet things would not work for him, we were able to thicken up a lot of soup bases and spicy/sour foods and suddenly he would eat like a champ! Now, we continually battle the weight gain issue, but slowly and surely we are getting there!

Nancy said...

Love, love, love your post! We are just starting into this food journey. Our daughter, Rebekah, has been partially tube fed (g-tube) and partially orally fed since birth, but we just can't seem to bridge the gap between what she will take by mouth and what she needs. Therefore, we are still on the tube. Grrrrrr....

I really appreciate the ideas you gave for what to feed when baby food isn't cutting it any more. Rebekah very reluctantly eats some baby foods, but really wants what is on our plates. The problem is that darn gag reflex. She gags on anything that is not very liquidy, pureed, or dissolvable. She is beginning to drink from a sippy cup, but maybe only 2-3 ounces a day. She does drink maybe 6 ounces from a bottle all day, and we're working on more. Right now, she is only tube fed at night, but our nutritionist is pushing for more tube feedings to increase calories. Your post has given me new ideas to try and a little bit of courage to be firm and do what I feel is best.

Thanks for the information and help!


The Hands said...

It was fun to read through your feeding story. (Brought back a lot of my own memories.) I remember you being frustrated in some of your posts, but didn't realize that you spent so long trying. I'd have to agree with you that if you want your kid to get off the NG/g-tube, you have to be stubborn and not give up. You have to stop weighing every day and getting concerned when they lose a few ounces. You have to lose a lot of sleep and clean up a lot of messes, but it's worth it! We are so blessed that Natalie was totally bottle fed two months after she came home from the hospital with a g-tube. I don't think the docs were expecting that. Anyway, I so proud of you for sticking to your guns. She always looks so healthy and happy. What a blessing!

Shila said...

Mimi, wow, you are a trooper. I am such an outsider to it all but I can see from your post and your testamony at Sam's baby blessing that you are one tough mama! Keep your chin up and look at all your accomplishments with pride. You are amazing.

Anne said...

I am in awe of all the things you have had to learn over the past two years. you have done a wonderful job!

Annie-Staten said...

Ahh! I can't wait for the day that my Conner eats!!! He was on an NG, then NJ, then NG up until he was 8 months old, and then he got his g-tube.

We practice with the bottle twice a day, baby food twice a day, and hands-on playing in food twice a day. (and of course the giving of tastes of everything to him through the day!) He is eating about 1tbl at the baby food practices and drinking about 10cc's at the bottle feedings.

He has definitely done so much better now with the feeding tube out of his nose, and with his g-tube. He is s.l.o.w.l.y. picking up on the eating thing, and every day I just pray that I can keep having the patience I need to help him the best I can!

It is the hardest thing I have ever done in my life- to have to teach my baby how to eat with his mouth. I dream of the day when we take out his g-tube and he eats like a normal little boy! Oh how I dream!

Your post inspired me to keep on believing that it WILL happen, it will just take TIME! Thank you! :)