Resources for becoming NG tube free - Cups and Spoons

It took us so long to get together all the different resources we used to help get Faith off her NG tube and to keep her from going back to it. We took her NG tube out on the 29th November 2012 and below is some cups, spoons and plates that is helping us in our journey of staying NG tube free. We have a amazing speech pathologist who supports us and provides us with so many of our resources. She is such a blessing to us. We have modified the spouts on most of the sippy cups and removed the valves so she doesn't have to suck as she isn't able to do that yet. Her favorite for a long time was the NUK cups in different colours, yellow, blue and green. We are still struggling to get Faith to eat from a spoon but we are working on it. She used a spoon for the first few days after we took her NG tube out and moved onto the sippy cups maybe because the spoon used to much energy and drinking the blend allowed her to get more energy and not use as much to do so.

Resouces helping us with feeding - music and books

Justine Clarke's Website

I thought I'd share some of the resources that we have found a real blessing on our becoming tube free journey. Firstly, music and books.

To make eating fun we made a list of music that was about food, as Faith loves music. I got them from the itunes store.

Watermelon - Justine Clarke

My Food is Made from Sunshine - Jay Mankita

Mrs Knife and Mrs Fork - Justine Clarke

Jelly Jelly Jelly - Justine Clarke

Hot Potato - The Wiggles

God Made Food - Karyn Henley

Fruit Salad - The Wiggles

Food Food Food (Oh, how I love my food) - The Wiggles

I'm So Hungry - Playschool

Food Poem - Signing Up Presents Sign-along-sings

Food Gives Energy to Me and You - The Body Rocks

The Food Trying Song - Words that Rhyme with Orange - Ross King

Hey Food - Sesame St - Sesame Rd Vol. 2

Banananana - Surfer Jeff - The Wiggles

Mango Walk - Surfer Jeff - The Wiggles

I love Oranges - Surfer Jeff - The Wiggles

Let's have a barbie on the beach - The Wiggles

Let's make some rosy tea - Wiggle Bay - the Wiggles

Polly put the kettle on - Racing to the Rainbow - The Wiggles

Wash your hands - Let's Eat - The Wiggles

Friday is fish day - Let's Eat - The Wiggles

That is what you call digestion - Let's Eat - The Wiggles

Clean your teeth - Let's Eat - The Wiggles

Cook Captain Cook - Let's Eat - The Wiggles

To Have a Tea Party - Getting Strong

Vegetable Soup - Whoo hoo Wiggly 

Gulp Gulp - Woo hoo Wiggle

Teddy's bears picnic

Ch...Ch...Ch... The toothbrush song - Playschool

Singing in the Kitchen - Oomba Baroomba Playschool
 
Books about food

Available from The Book Depository

Food - Published by The Book Company - ISBN 978-1-74202-419-6

My Very First Book of Food by Eric Carle - ISBN - 978-0-399-24747-7

The Very Hungry Caterpillar by Eric Carle - ISBN- 0-399-21301-5

Spot Bakes a Cake - by Eric Hill - ISBN- 978-0-14240-329-7

My Food - A First Word Picture Book - A Campbell Big Board Book - ISBN - 0-333-68363-3

Out and About - At the Supermarket - ISBN - 0-7105-0418-7

 Adam's Apple by Richard and Marcia Vaughan - ISBN - 0-86788-194-1

Available from The Book Depository

How did that get in my lunchbox? The Story of Food by Chris Butterworth - ISBN - 
978-0-7636-5005-6

The Teddy's Bears Picnic by Jimmy Kennedy - ISBN - 0-216-92270-4

Possum Magic - by Mem Fox - ISBN - 978-0-152-63224-3

Day 4 - No NG Tube - Coming home!

We are home, I am sitting outside on our deck with the cool breeze refreshing me and the little wrens dancing around the backyard and the nervous young Rosella attempting to gain the courage to land on the bird feeder while I sit on the deck occasionally glancing up and watching him. So we are home, it is different, it is strange, no definable routine, it must be created again, I even feel like I am in a bit of a blur or mist, waiting for someone to wake me from this very strange dream. But is it true, Faith doesn't have her NG tube and it is wonderful to see her free from it. We are home and she still doesn't have it. Yay! On approaching our street she said home a couple of times, the first words we have heard her speak in days. Then while putting Play School on for her to watch, she giggles and smiles, though only fleeting, I can see more life coming back into her body.

It still isn't easy though, Faith has no real sleep patterns and wakes around 3:30am - 4am because she is hungry, this morning she only had about 90mls of the blended diet and we tried putting her back to bed and I could see she wanted to sleep but I think she was developing a temperature again, a morning thing, and I was right, it didn't get to 38degrees but was high enough to make her feel unwell and grunt a lot. It dropped very quickly when I put a damp washer on her face. She ate more blended diet later totaling about 150mls in the morning. But that seemed to be it, she didn't want anything, no fresh juice of blended diet, her next decent amount wasn't until 4pm when she only had 50mls. I guess it is to be expected since yesterday she had nearly 800mls so maybe she isn't as hungry. We went to the Spina Bifida Hydrocephalus Association Christmas Party and it tired her out. She met Santa for the first time and didn't cry and got a lovely gift of some books and a funky bath toy. 

We didn't stay long and headed back home and I am very glad to be home but will miss the face to face contact with Faith's speech pathologist. We are going to talk every day and I will send her texts to keep her updated and we can brainstorm any problems and that is wonderful and very helpful. Her support is what has kept us going when we didn't know how to proceed. But back to now and that Faith hasn't wanted anymore food. We have tried different cups again but she shakes her head and if pushed brings her arm to stop us. I must keep reminding myself that Faith is in charge and she has to choose to eat and drink not be forced. It is just so hard when I know she must be hungry and needing food. But I have to be very patient and push on towards the end goal. So my plan is to create a new food friendly zone and a cup station for Faith so she can pick and see encouraing and inspiring pictures and words around. It also encourages me greatly to see quotes and encouragement around.

I don't know what tonight holds, I am hoping Faith will wake so I can give her some more food but hoping she can find rest to gain more strength and gain weight but I must not rush this is only day 4, though I feel months and months have past.

Day 3 - No NG Tube - Increasing Volume

Emotions are crazy and I sometimes I wish I turn them off or even just suspend them for a little to have a break from them hitting me when I least expect it. I had a good cry tonight just overwhelmed with tiredness more than anything I think. We have only been in Brisbane a few days but feels like so much longer and the thought of going though great is daunting - going outside my comfort zone that has now been created her at our apartment. I plan to go home and recreate our little spaces for Faith with our encouraging words and pictures. Just because we are going home tomorrow doesn't mean it will all be easy from then.

We have seen improvement today with Faith drinking her blended diet, about 600mls plus which is wonderful we just need to keep working at more volume. She still doesn't want her spoon but that is something we can work on as we go, the big thing is just getting her drinking more blend and getting that weight back. Faith is so funny she gets frustrated and annoyed when we don't feed her at her fast pace. I have some lovely pictures of her covered in food and it is a pleasure to see and clean up. Faith is still quiet, sleepy and weak but getting less of those things each day. Her tummy is filling out instead of decreasing, though I wish mine would decrease, lol. I love seeing her get bigger slowly.

We, being hubby, speech pathologist and I had a team brainstorming session and nutted out different ideas and plans. Faith now has a a variety of cups for different drinks and she is can pick which ones she wants to use. We tried to go a bit more with what Faith wanted in regards to sleep and she had two two hour naps and was stronger and happier for them. Her routinue being completely changed she has to figure it out all over again.

We headed to Garden City Shopping Centre for some fun retail therapy and feed Faith in the food court and she watched the busy people and enjoyed people watching again. She was still quite tired so we headed back to the apartment for her 2nd nap.

Our biggest thing today was that we found uriates in her nappy, not a huge amount but it was probably just come through now since she wasn't eating much a few days ago and all the food she was eating flushed it out. Still didn't like seeing it though but a few hours later with another wet nappy they were barely there.

So overall Faith has increased the amount of volume she has drunk, more alert and playing in tiny amounts -  a high five, a wave and pushing over a few toys. We are getting there and tomorrow we go home without a NG tube.

Day 2 - No NG Tube

Brain overload, how do I gather my thoughts? How do I sort them and renew my brain so I can function again. After our day starting at 2am towards the end of the day, I didn't feel like I was coping very well. Faith woke at 2am, hungry, irritated and having keppra withdrawals (she refused her complete dose). By 5:30am she had already had 5 lots of food, her mouth opening wide to take the food. She was still tired but much more alert and quite grumpy really. By mid morning Faith didn't really want any of her food from her spoon, the old spoon aversion rearing its ugly head. It was distressing to watch as I just wanted her to eat but I know it has to be her that decides to eat and wants to eat.

After brainstorming with hubby and the speech pathologist it was deicded that we should make Faith's blended diet and see if she would eat that as it is such a balanced diet and we know that it helps her gain weight and grow. So off hubby went to the store to by ingredients we missed, while Faith napped.

Faith spent alot of the morning grunting and just plain grumpy, she was hungry and she just couldn't get satisfaction, we tried a bottle with milk and she tasted it but wouldn't take much. The weather was very hot but Faith felt hotter than usual and when we measured her temperature she had a temperature and thankfully she just took some panadol orally and we didn't see that nasty temp again, thank goodness. A bit scary. We gave her wet face washers to play with and she took them to her mouth and spent the entire day covering her face with them and rubbing her mouth on them.

A trip to Southbank with the hope of Faith being distracted enough to eat but to no avail, she just didn't want it. What was going on? why wasn't she taking food after doing so well yesterday and this morning. Faith was drinking lots of a water, puree, electrolyte combination which is good. But just not eating much.

After our hot walk back to the apartment we put Faith to bed and she was asleep in seconds. We talked, brainstormed and talked some more and we got out all the sippy cups we had and decided to modify a couple and see if Faith would take some blend through her cup since spoon feeding wasn't working so after Faith's 2 hour sleep we tried and she took some and took some more, nearly 100mls! This is wonderful! I could barely believe what I was seeing, Faith was drinking her blended diet and was drinking lots. Yay!!!

So in summary we have made a lot of gains towards the end of the day but I know I have felt fear, scared, overwhelmed and longed for my little chatty, playful little girl but after some food she was touching my face and feeling better so there is so much hope for tomorrow!

NG tube is out and she is eating!

What a day, it has been full of intense emotions that have been feelings so desperate for this program to work to such joy and elation I just wanted to yell my relief to the surrounding world. I have pleaded with God and prayed and prayed and he has and is answering. Faith is now asleep in bed and for the first time we have stopped and thought what do I do now? Clean up? No can't be bothered I will sit down and write so I don't forget this day.

Faith slept through the night and woke hungry and we gave her her medications, water and electrolytes. She was still refusing any oral food or water. The speech pathologist arrived and we took Faith into the bathroom to show her her face with the NG tube and then I pulled it out and we waved bye bye tube and threw it in the bin. Wow! It is done!

Faith was overwhelmed and tired and from what I have read this seemed to be a normal response. With pulling the NG tube out a very different start to the day and we had a little food play session and she was ready for a sleep so we put her to bed and jointly decided to let her sleep for an hour and half and then wake her and start some of her planned outings. We woke her and she was upset and sleepy but recovered shortly after. We headed to the park and Faith was sleepy and not really into playing. We got out our pureed food, thanks to the wonderful Vitamix Blender, pureed grape and pretended to put lip gloss on and Faith tasted it and wasn't unhappy about it. Hubby and I played ball to distract Faith and the speechy used a special peach colored spoon and Faith took the food, we kept the distraction and it seemed to help and she was eating, she was very sleepy but taking the food. I think her body was telling her she needed to eat and drink and this is what she slowly started to do. She ate custard and by the end of the session was drinking some water (a combination of watermelon puree, water and electrolyte). The day before we had gone through lots of different type of cups we could use for Faith and Faith picked one but in the end it wasn't the one and she moved to another cup. After a good half an hour feeding with no NG tube we headed back to the apartment for a short rest for Faith and then have another feeding time.

Faith had a quick nap and we she took another small amount of food but required distraction but was doing ok. We thought it might help to go for a walk to Southbank and of course a quick stop for some delicious waffles at Max Brenner, our favorite cafe, Faith kept drinking which is wonderful since over the last week she hasn't drunk hardly any water. We headed to the pool play area and let Faith watch the other kids and she ate heaps more, her mouth actually OPENED wide for the food. She ate heaps and even tasted sweet potato. She has picked up after her eating sessions and we have had two more since we came back to the apartment and she did really well even when we hid her medications in some of the food. She is completely exhausted and after her bath is fast asleep in her bed. So that is our day, we have reviewed what worked and didn't and we have all planned what we are going to try tomorrow, our little girl Faith is doing so amazingly and I am so proud of our little girl. We have all worked together as a team and we are getting there. Praise God!!!

Hunger Induction - Day 5

So here we are in Brisbane at our apartment for 5 days to attempt to wean Faith off her NG tube. What a crazy day, being day 5 of the hunger induction program Faith is showing signs of hunger and we are trying to help her understand what hunger is what she should do if she is hungry. She is refusing all food and drink now. We headed to Brisbane this morning so we could take Faith to the Spina Bifida Association's hydrotherapy class, at home when we go swimming, it is just Faith, the teacher and I so we were excited to be part of class with other babies and toddlers. What a full on class it was, it was full of different activities to build strength in various areas and had songs and lots of movement. It challenged Faith on every level and it was good for her to be challenged outside her comfort zone but it was exhausting for both of us.  It was fun to be part of such a action packed class I wish we could come more regularly as it was good for her. Lots of practical and helpful ideas to take back to our class.There was even little ducks that had lights in them that Faith pushed back and forwards. We didn't make it it through the entire hour, I could see Faith was tiring but I was also feeling quite overwhelmed too. 

Faith didn't sleep very well overnight and rose very early, she was hungry I think and she was irritated and needed distraction and constant play time. When she is hungry in the morning she sweats all over but it settled after some water and later her home made blend. But I woke distressed too, I was second guessing what we were doing, my mind was consumed by doubt and fear, I know we are doing the right thing and Faith's NG tube needs to be gone but all the preparation and coming days suddenly seemed nearly impossible, there were a few tears but I had to keep going. The speech pathologist kindly asked one of the other mums if she would have morning tea with us and her two delightful daughters sat at the table near the pool and ate their lunch and though Faith was nearly going to sleep she tried to interact and when the little girl offered food I could see Faith wanted to touch as she reached out but was just too tired. It was good though.

We headed back to the speech pathologist's room a short drive away where there was a little place of heaven was set up with dolly's, teddies and a monkey were having tea and a play mat with the hungry caterpillar crawling around and toys and books were ready for Faith to have some fun. On the wall were quotes and words of encouragement like, 

No pressure

keep strong

relax

keep the Faith

keep swimming

life isn't about waiting for the storm to pass, it's about learning to dance in the rain

making a big life change is pretty scary. But, know what's even scarier? Regret. 

Your wings already exist. All you have to is Fly

With inspiring and encouraging words around it will help us keep going and remind us to relax and have fun as that is what it is all about.

We laid Faith down and with some relaxing music playing, she relaxed, chatted and eventually went off to sleep on the floor. It gave us a chance to run through our plan for the morning and of course the celebration of Faith's NG tube removal, tactics, strategies and of course the biggie that Faith have fun learning about food.

Checked into our 1 bedroom apartment, unpacked and make Faith's space and start to unwind my brain. Thanks to an inspiring group discussion with hubby and speech pathologist I am feeling motivated, encouraged and inspired that we can do this. There are so many people praying and God CAN do what seems impossible.The next time I blog Faith will have no NG tube! Bring it on!!

Hunger Induction Program - Day 2

It isn't long until we take Faith's NG tube out and I really truly hope it is forever. After reading and reading all about tube weaning and the different styles of approaching it, we decided upon with consultation with our speech pathologist to use the similar methods to the University of Graz. As of yesterday we are in the hunger induction phase of Faith's tube weaning and we have noticed she is is discovering hunger but still not taking taking anything orally, still feed through her tube. She is interested in food, even had a few dips into my bowl of cereal. She stares very inquisitively at food and seems to want to know more.  She also has been playing a little with her food at her own choice.

The preparation and research is quite intense and draining. I talk to the speech pathologist every day and we work through an concerns or issues. We go through EVERYTHING and have back up plans. It is all very well thought out and planned. We thought we would make some Boardmaker activity sheets on first tastes, eating and the one I doing tomorrow is on tastes, so pictures of her food in puree form and its normal form. We are also increasing our Makaton sign use with signs to do with food. We have been having 'eat dates' nearly every day so Faith can see other little people and big people eat. It has been great getting out and seeing friends each day but also quite tiring. On one of our outings this week gone, Faith threw her NG tube up right before her tube feed was due so my friend, whose daughter had a NG tube a few years ago kindly gave me a hand so I didn't have to call hubby, all I need is someone who knows what to do, holding Faith still and I can do the rest.

I have our Hunger Induction chart printed out by day and write many many notes on it. So we can see how everything is going. I have my daily running sheets for when we are in Brisbane, I have equipment, food, schedules and activity lists. It is all really ready to go and I can see Faith will have fun with what we have planned but I just want the time to arrive so we can get started with no NG tube.

Do you know how hard it is to find books for kids that just talk about eating and food? It is quite hard.  I have Teddy's Bears Picnic, Possum Magic, At the Supermarket, My Food and a little board book about foods, but they are so hard to come by, if you are reading this and know of any, please tell me as we are trying to have Faith surrounded by food activities while we are Brisbane and when we come home. We have a Play School DVD called Munch and Crunch and a Dorothy the Dinosaur Tea Party DVD. We are trying so hard to show Faith all about food and drinking. It that is fun and we can have lots of fun with food. This morning Faith and I had a tea party with the grey elephant and two of her dolls. She was quite fascinated. Now we just have to work our way through this hunger induction phase and learn more about Faith's ques on food and hunger and try and show her about hunger. It is an exciting new phase for her and us and I believe she is truly ready for this. Her whole identity is changing by introducing food, as she has been NG tube fed for over a year.

Here is a link to a interesting case study on tube weaning, I have listed interesting feeding blogs on my blog list and resource list if you are interested in learning more.

http://www.pediastaff.com/blog/case-study-pediatric-feeding-tube-weaning-3816#

Take a leap! - NG Tube Weaning

The plan is still set to take out Faith's NG Tube next week and how so very close it is.This is a time for change and growth and at home at the moment it is full or research, planning, lists, charts as we can't be too prepared for next week. Our speech pathologist is gearing up the same way and she is amazing, but how do you say thank you to someone who is doing such an skilled job. In our research so far we have found a very interesting case study, Case Study: Pediatric Feeding Tube Weaning , it is extremely interesting and helpful in our decisions about how to manage Faith's tube weaning. Here are some other helpful links I am found so far

No Tube 
The Crunchy and the Smooth 
The Life and Times of Stella 
Tube Fed Kids 
Article - Tube Fed Dependency 

This afternoon we are heading out for a 'eat date', with a dear friend and her 3 kids, her daughter had a NG tube and got her back to eating. Faith is getting better and better with tastes. She tasted and tolerated yogurt yesterday and she is drinking really well. One of the biggest decisions we had to make was deciding to wean Faith off some of her blended diet before we go to Brisbane so she is hungry and ready to eat. There are so many things to think of, locations for activities, sleep considerations, constipation as her diet changes, how does she take her medications, what foods to try, weather conditions, music, play ideas, the best forms of communication and most of all and the most important one is TO MAKE IT SO MUCH FUN for Faith. I must admit most of spare hours and not so spare hours are consumed in organising but I truly know that it will pay off. 

21 Days of Gratitude - Day 16 - 100% Blended Diet!

Wednesday
Faith is asleep and I have been wandering on the computer, writing, researching, planning and thinking. But every now and then I stop for a moment, what do I think? I am thinking about how right now everything is peaceful, all I can hear, is the oxygen concentrator, it sounds like a space ship, an alien sound to the ears but to me it is the now, the normal, laugh if you will, but it is quiet and for a moment my brain just wanders through time soaking up its own thoughts. Compared to yesterday I feel relaxed and ready to take on the challenges that lie before me.

Faith, my mum and I drove to Mullumbimby this morning, it is a 40minute trip and we drive along country roads and chat. It is a good chance to have good conversations with my mum and Faith talks every now and then but loves watching the trees go by but protests if we pass a truck or car that makes her feel threatened. Why do we make this trip, it is to see our nutritionist, the last time we saw her was in late August as she has been away. Our nutritionist is a blessing as she gives her time to us at a much reduced cost and researches areas she doesn't know about but we always seem to be on the same page, our minds seem to work in the same direction and it makes it so much easier. Faith is now on 100% blended diet but we are making to much volume in her blend so we are looking at ways to decrease it but still get the required amount of nutrition. It is so exciting to be at last on 100% blended diet. With summer already at our door step we discussed ways of keeping Faith hydrated, she is drinking water and we put water down her tube but she sweats so much with either pain, stressed, straining or just unwell. So we are thinking some electrolytes might be worth a dry. Apparently the kids version is full of not so good things so she gave me the details of a colleague who has a much more healthier version so we will see how that goes. 

 Last week in Brisbane we were discussing with the gastrointestinal doctor about probiotics and she suggested VSL#3. I looked up VSL#3 and this what I found out about it, it is a probiotic with the highest available concentration of beneficial live bacteria. Each sachet of VSL#3 contains 450 billion colony forming units (CFU) of live lactic acid bacteria which can effectively colonize the gastrointestinal tract.  It sounds really good and we need to get Faith's tummy some more friendly bacteria but it is so expensive in comparison to the other varieties so I think we will have a bit more of think about it. One of our biggest concerns at the moment is keeping Faith UTI free and it is proving a challenge. The antibiotics are killing the infection but killing the good bacteria and then when she finishes the antibiotics the infection comes back so it is quite a vicious cycle. We thought we would try cranberry juice and so I looked for it in many shops and apparently at the moment there is a shortage of cranberry juice, something we really need and we are unable to get. I ordered some on the internet so hopefully that will work out.

I am so grateful that Faith is taking to drinking water so well, she is even trying to lift the cup to her mouth and looks at it when she wants more. She is tasting small amounts of carrot, pear and apricot purees on the cup and that is wonderful progression. I am so grateful to have people like our nutritionist and speech pathologist around to help us make Faith stronger! We have so many things to be thankful for.

21 Days of Gratitude - Day 14 - Being able to Eat!

Food play

I am finding the 21 Days of Gratitude such a true blessing, I am looking for more blessings in my day and my hubby points it out too. I do have my challenges but at the end of the day I can look back and see what blessings there are. Today, my highlights were my friends, receiving a encouraging phone call and attending a 3 year old birthday party and seeing my little lady laugh and giggle, loving life. I feel the cool breeze on my face and stand and gaze to the sky and just breathe, a moment all mine. 

Well, we are on a bit of an adventure with Faith's feeding progression at the moment. After talking to the speech pathologist in Brisbane we decided that we needed to figure out when we are to jump in and take out Faith's NG tube. We could go on like this forever so we need to get it done. Yes, very exciting but daunting. So it's decided on the 28th November we are heading back to Brisbane to stay at a apartment near the speech pathologist and we are going to take out the NG tube on the 29th November and for the next 4 days have no NG tube and see what we can do. This is really BIG, Faith has had a NG tube for over a year and for the next two and a bit weeks we have to push as hard as we can with tastes and textures. On Thursday last week she tasted pear on her drink bottle and tasted her blended diet (not a bad taste, very bland considering what is in it). And every day since we retry tastes and introduce new ones. It has been a gentle rather pushed progression of carrot, pear, apricot puree in water. Ensuring we have a defined breakfast, morning, lunch, afternoon, dinner and supper food breaks. And of course keep feeding her her blend minus any commercial formula (energivit). The gastrointestinal doctor said that we should remove the formula (energivit) since it is upsetting her tummy so much.

Food is friend not foe!

The days are intense and if I thought I was busy before I was wrong because now I have barely enough time to eat in a day. Let alone stop and think, I just do. My brain is in overload of what we need to achieve and we are also trying to arrange eat dates with other little people as we need Faith to start eating even small amounts. I am so grateful to my friends for helping me on this one, particularly this one friend, whose daughter had a NG tube for a long time due to a heart condition. We went to her 3rd birthday party this afternoon and she ate and ate, she now has no NG tube. So there is great hope. She is doing wonderfully and loving tastes and textures of food. A testament to devotion and perseverance of a family to get her dear one off the NG tube onto food. She understands the hard work that goes into a day. I must admit I don't have much patience with anything else at the moment, I tend to work quickly, talk quickly and get stressed very easily. I am trying to take my time but I fear that if I do then I will miss an opportunity to get Faith to try a yummy food and all the effort, time and money that will be put in will all be vain. I need to trust God that it is going to be ok and he will give me the strength to push on. I really didn't think that this time last week Faith would be tasting food and progressing so well. I don't think I will ever take eating for granted again, the blessings of just being able to lick a ice cream cone without wanting to gag or even fighting against others eating. So the next time you have drink of milk or eat a chocolate just stop for a moment and think how much it is a blessing it is to be able to eat!

Feeding, we can do this!

In the past with Faith's eating orally, I am thinking about this time last year when she wasn't having anything by her NG tube, we managed to get a good rhythm going. But then Faith would get sick, a UTI or it was just her and we would back up and be back towards more tube feeding. At this point, Faith has all her nutrients through a tube via a blended diet and some energivit formula. To keep the feeding program consistent it is so important but there are little hurdles that are challenging. For example, Faith is waking at 4:30am - 5am and she appears to have an upset tummy, there is crying and she vomits and then is ok some what. I can see she is tired and not really ready to face the day but she is unable to stay in bed so her days starts and so does mine. I am glad the birds are up first.  As previously mentioned we are trying to get her to drink water orally before every tube feed or meal time and yesterday was no different. Up when the birds are singing for the sun to hurry up. Faith happily drinks water and then I give her what she can't drink down the tube. She is sweating all over this morning but sometimes, well, quite regularly she does that, that is just Faith.

After her energivit formula feed she again has a tummy ache and is still sweating, I think it is her teeth as she is grinding them a bit. We have morning tea outside on the deck and Faith sits up and watches the world go by and she drinks water and curiously watches us eat. Afternoon tea goes pretty good too except when I do her tube feed she just vomits and she sweats all over, oh, please not a UTI but it could be. I am thinking surely not we have only had a week clear and what about her feeding program we are never going to make it if she just can't stay well, panic is in my mind and fear too because it is just such well known terriorty for us.

 So I plan a BBQ for dinner where Faith can watch her dad cook yummy food and at the same time see me prepare the salad and potato bake. I am concerned sitting Faith in her pram will just make her vomit if she isn't feeling well but we have to persist. She watches the world from her mat on the deck and watches an ibis fly over. Dinner time arrives and at the table she is fine, she doesn't want the plate or food near her but is very very content sitting watching us eat with the occasional drink and we talk about our day and she is happy. After dinner we take her outside and blow bubbles as the sunsets on yet another day. We reluctantly test for a UTI but it is inconclusive so will try tomorrow, I hope it isn't, I really do! Hopefully tomorrow will be the day we can try food on her lips again and I hope she is ready for it. We are aiming to do Faith's feeding program today and then again tomorrow as need to get back into the rhythm of it. Let's hope today is the today for Faith to have a positive taste of food. Until tomorrow!

Faith's feeding program - progress!

Last week when we went to Brisbane for Faith's sleep study we also had a appointment with the spina bifida association's speech pathologist. We couldn't fit the new pram in the car (need to get a bigger one for all the stuff) so we sat Faith in a corner chair and had a little table too. Last time we tried a corner chair Faith needed more head support than what it could give but this time after we strapped her in with some green lyrca she was fine, she liked it. We started Faith's feeding program, working our way through the food hierarchy and when we got to the avocado and I didn't even cut it up, she started rolling it around, mashing it in the other foods, she used it like a ball and she got quite vigorous with it. Faith was having fun!

Faith then waited for me to bring out different foods and mashed, squashed, squished and then she wiped her head and it went all over her head, it was great. Faith hasn't played with food for sooooo long. We can see the program working and it is exciting! Since we moved and there is so much change (an unsettled Faith at night with little sleep) we thought we would introduce family meals together. Last time we tried having dinner together she just got so upset and it became to stressful for everyone. Our new house has a outlook to the backyard where little wrens sing there songs and we feel safe in our little haven.  We have now had two family meals together and she has laughed at us while we eat, chatted, sung and looked curious, so it has been a success.

Family meals are part of Faith's feeding program as it is part of the transitioning process back to eating. It feels good to start this 'normal' activity. So Faith feels in control we have the food set out so everyone just serves themselves and hopefully then she feels no pressure, we also use white plates like in the feeding sessions so Faith doesn't get distracted. She isn't eating yet but we are on the right track to introducing food again. Each day Faith is taking a few sips of water, at first she shakes her head and I say, just a little bubba and her little tongue comes out for sip. Such a good little girl.

I am hoping we will have another feeding session either today or tomorrow as it has been  week since we had one and we are trying to work up to 2-3 times a week. I love seeing Faith get better and better...

Faith's Approach to Feeding - 1st Session at Home!

Our first session for Faith's approach to feeding was with the speech pathologist and she showed us and gave us all the necessary information to run the program at home and we catch up once a week either via facetime or telephone.  We had planned to have a go last weekend but we all caught a bug and it got put off.  At last yesterday, I spent the morning organizing the 14 foods, took me a while and then I printed off our session goals, food hierarchy, food awareness and evaluation sheets. We had our food in separate labeled clear containers, white plates, white napkins and we were ready. To give you an idea of how it works,  

• Goals are made
• Sensory preparation to ensure Faith is in the best sensory space
• Transition from sensory preparation to table
• Everyone at the table
• Blow bubbles
• learning about hygiene
• Feeding - slowly going through all the foods, smelling them, playing with them, we are not asking Faith to eat the food at this stage we are looking for tolerance and acceptance of the food. Food is friend not foe. Lots of positive reinforcement for Faith.
• Clean up routine
• Transition from table to next activity
• Review of session etc.

There is lots more in the session but that is just to give you an idea. The session went so well. We sword fighted, decorated, squished, squashed, mashed and made hats with the food. We didn't make a fuss, we talked to Faith, placed food on her plate and showed her how to play with it. Half way through she gagged a bit and then picked up and by the end poke food and put her hand on the strawberry. She hasn't touched food by choice since her food aversion developed so that is very exciting. It is alot of hard work preparing but she is so much further along with food now and the effort and time is definitely paying off. We have written our notes and look forward to our next session in a week.

Food is friend, not foe!

Wow, what a crazy, busy couple of weeks, time is flying past and I wonder what I do each day, then I remember what is in each day and wonder how I managed it fit so much in, but it sometimes just goes into one giant blur. Clouds zooming fast through the sky with not a moment to lose. We had a flying day trip to Brisbane to visit the speech pathologist at the Spina Bifida Hydrocephalus Association and it is always such a pleasant, useful and inspiring place to visit. Our plan with the speech pathologist was to go through what we were currently working on, oral alerting, oral stimulation, sensory awareness and all of us learning makaton sign.  After which we were going to learn more about Faith's approach to feeding that the speechy had especially designed for Faith, working with what challenges we have and of course the distance issue. What an amazing program she developed! We are using strategies from the SOS feeding approach (Sequential Oral Sensory). The SOS Approach focuses on increasing a child’s comfort level by exploring and learning about the different properties of food and allows a child to interact with food in a playful, non-stressful way, beginning with the ability to tolerate the food in the room and in front of him/her; then moving on to touching and eventually tasting and eating foods. It is such a fun approach. We are not using the typical 'guidelines' as there is no one living in our local area that runs this program to help us so sadly can't run it the normal way with other kids and parents but not to be dismayed as a feeding approach was created just for Faith. We have session goals, medium goals and long term goals with our ultimate goal being Faith eating and no tube.

We had our first session, where I had prepared different foods, purees, hard munchables, ranging in colours and smells. I had never pureed just cauliflower before and what a strong smell it has to the luscious sweet smelling pear and we all wanted to devour on the spot. Foods are arranged in order called a food hierarchy, wow, so much to learn. Speech Pathology is such an interesting field, I am learning so much and enjoying learning too. Anyway, we followed a plan with certain guidelines. Faith tolerated the food in front of her, she didn't touch it but she allowed us to play with it in front of her and make a huge fuss, three adults having carrot sword fights, making faces, decorated cauliflower bouquets with sweet potato, fruit hand cream, flying saucers, all the manners at the table were gone. If Faith didn't want a particular food on her plate, then we covered it with a servitte so she couldn't see it. We all smelled the yummy food as it went around and talked about the flavors and scent. I am even more appreciating my awareness of texture, smells and taste. it is so easy for me to just eat what I would like and not think of how a certain texture or tastes, scares me, makes me uncomfortable or just freaks me out. Apparently Faith did really well for the first session as some kids yell and scream and protest but she sat watching, observing and wondering. The plan is to do the session once week and work up to more and also to have a family meal together so Faith can just watch and be part of the family fun at the table. I must admit I am excited, we have goals, we have dreams too but most of all, this will be better for Faith, this approach will work and will get rid of her tube and have her at least eating purees again.

We went to Byron Bay on the weekend to visit some family and as we sitting in the annex of their caravan, the wind blustering outside and the rain hoizontal Faith dipped her hand into my cool lime and lemon drink, she swished it around and then did again and again. Then of course, the little chubby hand comes right at me to say, I am clever mummy! We then explained to our family why this was a good thing for Faith to be doing and why we are encouraging food play over manners. With everything I eat I show Faith and one day she will see food as friend not foe...

Planning Faith's 2nd Birthday Party

This week Faith turned 2. Wow! Last year on Faith's 1st birthday, I couldn't celebrate, yes I am blessed for her arrival but to me it was a reminder of that day my baby was taken away from me, the day I could no longer protect her from the world, the first time we were separated and I couldn't comfort her first tears or see her first sleep or even feed her, yes it still hurts. She spent her first 6 weeks in neonatal intensive care and I couldn't stay with her. I spent hours and hours a day by her side but felt I didn't know her, I didn't know what happened during the night I wasn't in control of feeding or anything. I felt I had to fight to be involved. Faith was very sick so I found Faith's 1st birthday a day full of sadness and emotions. It didn't help that she was sick then as well and it wasn't until the end of 2011 that we started living again and going out, doing fun things, being a real family, it was because at last she is well. Praise God!

Faith's goodie bags for girls and boys! Such fun!

So here we are, Faith's 2nd birthday, this year I feel happier. My darling is well, she still has lots of catching up to do and bad days, but she is gaining weight and interacting with us. There is so much more hope and happiness. She generally sleeps through the night and has a long day time nap, she is settled and generally content. My mum said to me oh think about 2 years ago and her wonderful arrival but I said, yes it is wonderful to have Faith but I don't wish to think about that day 2 years ago, I want to concentrate on how well Faith is now and how beautifully she is doing now. So, we decided that we should celebrate Faith's birthday and tomorrow we will be having a birthday party for Faith. We have invited her little friends and their families. I made little cup cake invitations, I had so much fun making them. We have planned yummy food, honey joys, chocolate crackles, fruit, mini sausage rolls and party pies, spring rolls, veggies and dip. While the parents enjoy chatting, the kids are going to decorate cup cakes. When I was thinking about what we could entertain a bunch of near 2 or just over 2 years old, I thought about what would be good for Faith. Food, of course. We are trying so hard to teach Faith that food is friend not foe so why not decorate cup cakes. Lots of kids playing with their food. Perfect! We will all sit outside on the deck, where we can hose the deck off when finished and maybe the kids, just kidding.

I must admit that even through all the fun preparing decorations, food and invites, I think there will be those tiny, fleeting moments when I see the other little ones sitting up, crawling and walking and long for Faith to be able to do at least one of them. I know she will get there but it doesn't lessen a tiny bit of longing for my little one to sit up, crawl or walk.

Some great cheap items for Faith's goodie bags

It has been really fun preparing. Faith and I made the honey joys yesterday and today we are making chocolate crackles and I am going to attempt to make a doll cake. Never made a cake that big or fancy before. We went shopping for items to put in Faith's goodie bags that we will give the kids when they leave the party. It is going to be fun! When I was growing up my mum and dad always had parties for me. I remember the pool cake as I loved swimming. My mum and dad made my parties so much fun and so special. When I was little I would get so excited and then end up in tears as I got so excited. I wonder if Faith will be like that? Anyway, what could be better than celebrating such a precious life!

Making it through the week

My daughter is asleep and it is one of those moments I think I could do some housework, get dressed, empty the dishwasher but I chose to sit. It has been another long morning. This morning and the last few days have been really hard. Faith wakes distressed, crying so loud, sweating and when we are putting her to bed at night she is unwell too. We have times during the day when she is well, where she plays, chats, learns new things and enjoys life. It is one of those periods of her unwellness. The doctors know about these periods of sickness and there is currently nothing they can suggest or advise. I had hoped it wouldn't visit us just yet, I was hoping it was far away. But it is here and I there is no other choice but to keep on pushing through. It doesn't help that it is raining, makes it all the more harder. I don't know what is causing Faith to be unwell this time. It all seem to get worse after we gave her the Neocate Advance, but maybe it just set it off. Faith has such a sensitive tummy. Faith has been teething the last few days so I don't think that has helped. My only thought is that it is a tummy ache and it makes me think how I just want to start a blended diet as I know it will help.

My brain is at the point where it is full. At the moment there just seems so much to do. I have been researching a blended diet and I have enjoyed learning about it and reading the journey's of others. I read about so many success stories and it has been encouraging as I know we are doing the right thing. I ordered another book called Complete Tubefeeding and it looks very informative and helpful. I just have to wait for it to arrive from The Book Depository. I also ordered the Homemade Formula Handbook and Super Nutrition for Babies by Katherine-Erlich. I look forward to them all arriving soon. I am hoping that between them they will provide me with all the information I need to make decisions about Faith's diet and the best way to start a blended diet. Our current dietitian though very helpful isn't able to assist us with a blended diet as when I once mentioned it to her she said it is best she doesn't know that.

I have been printing out articles and information on a blended diet, tube feeding, general diet and I am storing it all in a folder so I have it right in front of me to read and make notes on. It will also be a useful resource when we go to appointments in Brisbane and elsewhere and I can take it and if I get professionals that are not that keen, would like to know more or don't think that we are doing the right thing I can show them my information and refer to it. I just want to be prepared to answer any questions about the blended diet and provide relevant information. As when I last brought the subject up at Faith's appointments it wasn't very well received. I was told that I should just concentrate on her eating food, but I said all the vomiting is stopping her from eating foods and growing. If we can stop the vomiting I do believe that in time she will be more interested in food again. I long for the days when she was so keen to eat so much breakfast, swallowing it all down with a demand for more. I miss those days. I know they will come back but it is such a tedious process.

I am excited that this blended diet could help Faith. We are hoping that a charitable organization will assist us in the purchase of the Vitamix Blender but in the mean time we have ordered one as we can be reimbursed for the amount. So I am very excited that shortly we will be receiving a Vitamix Blender. The company that is supplying us in Australia, Raw Blend were very helpful and they also gave us a medical discount on the purchase of the Vitamix 5200. So that was a wonderful help. So now, I just have to wait, I have to wait for the books to arrive, for the blender to arrive and then we can little by little start Faith on a blended diet...

Learning about a blended diet

It is so hard to know what is the right diet to give your child, there is so much advice on what is best, what will help my child grow, it will do this and that. Formula offers a complete solution where calories are controlled and a specific quota is allocated and we aim for that. But I miss Faith having the real food, making cookies for example or going out together and having fun out eating but our aim is to get her back onto real food. She was so much better when she was on purees, there was no vomiting or nausea. When Faith ate pureed foods recently she developed a food aversion so now it all goes down her NG tube. So we started looking at what was out there for us. In our situation there doesn't seem to be many options. We have tried infatrini, nutrini, the main stream formula's, pepti junior and our current formula energivit and it seems to be the best of all so far. We give Faith a combination of energivit and zymil milk, the protein component. We have food play and let's eat food sessions each day and so far she lets me put a tiny bit into her mouth happily so that is a great success. But Faith still vomits and there are days which are a lot at the moment, I spend my time attempting to distract her from rubbing her face which makes her possibly vomit because she wriggles the NG tube and oxygen prongs. Then someone on a forum suggested a blended diet.

Firstly, what is a blended diet, the idea is to put a home-cooked meal through the blender, strain it, and then ingest it through the tube.  From what I have read blenderized food can be cheaper than formula unless you are purchasing a special supplement to go in the mix. It can be commercial formula with a small amount of baby food added or vegetable added or blended meals throughout the day with commercial formula at night. There are so many options of working it. My thoughts is it would have to be more appealing as with being able to taste the food through smelling and even burping. It would have to be better than formula particularly if it is vomited up as formula's can taste so bad, but I guess that would have its negatives too. 

When I have spoken to some Australian health professionals about a blended diet they have said that it may not provide all the vitamins, minerals, fibre, hydration, and calories Faith needs. Some don't know much about it and are interested to learn more where others don't want to know as it isn't an option in their work. Also, a big concern was blended food may clog Faith's NG tube and need to be replaced more regularly. I can completely understand there reasoning's but if it can reduce or get rid of all Faith's vomiting I can see the benefit. She would be so much happier, as the vomiting and nausea takes so much out of her. When she has less vomiting, she develops at a better pace and gets stronger, she is more interested in food and drink and wishes to play more. It has to better than cleaning up vomit where ever we go. We are not looking at getting a G-tube yet as the plan is to get Faith back onto purees.

Of course we are considering that making the transition to a blended diet is slow as we need to rule out allergies and in tolerance. From what we have read off various websites and other families experiences to start the blended diet we add a small amount of baby food each day and work from there to making our own blended diet. I am finding learning more about nutrition very beneficial even now when we have started yet. I think it is a very exciting time as this could be a good balance between formula and a blended diet.I have been looking around for information in Australia about blended diets and haven't had much success so far but have found some helpful information in the US and it has all been so positive.

I have been looking into what type of blender to use and it seems that an industrial type blender purees the flood small enough so that it go easily go down a tube. I have looked into the Vitamix blender and in Australia they offer a medical discount like in the US so that is great. Most people put the blended diet through a G-tube as there is more room than in an NG tube, but I read read about families putting a blended diet down a NG tube, just have to be more creative. At this stage it won't be all her food anyway, it will only be a small amount. If it is better for Faith then it is worth trying. I read a story about a lady whose son became 'more interested in food through a blended diet and there seems to be so many success stories. It is hard to know where to start and where to get these recipes. I ordered a book called Super Nutrition for Babies: The Right Way to Feed Your Baby for Optimal Health and it seems to be very helpful in regards to nutrition and homemade formula. I found out about it on a forum, nothing like a recommendation from someone else. I have also been to the website Mealtime Notions and it seems to be a very useful, informative and a helpful site. They have also advertised a book of a blended diet and I hope to purchase the book if they will ship to Australia. Faith has had such a hard time gaining weight so we will be extremely careful.

Link to sites that I have found informative

Oley Foundation

Mealtime Notions

Sorting out a new diet

It's raining outside today and it is one of the those kind of days to snuggle up on the lounge and watch a movie. It is peaceful in our home at the moment. Faith is at last asleep after more vomiting that usual. She awoke very early as I think she was feeling unwell in her tummy. She has had increased vomiting now for 6 days and I see the weariness in her eyes, it is tiring her. 5 vomits today at least, she is trying to play and be her happy self but I can see she feels sore and is over all the vomiting. When she went to sleep I gave her a big tube feed so we can get back some of the calories that we lost. I love standing at the end of her bed watching her breathe and move her hand to make sure she is touching her teddy with the pink bow and then when she stretchers out her legs and all is still while she sleeps ever so peacefully.

On Wednesday we drove to Brisbane for our long awaited appointment with the gastroenterologist. Our appointment wasn't too early this time so the trip in the car was a lot more pleasant with Faith saying car car car every now and then and she sat back and watched the world go by. She wasn't into the trucks going past and let out a little squeal of protest. On arrival at the hospital she had a huge vomit in the waiting room that was bustling with people. We thankfully only had to wait 15mintues and got in to see the doctor. She thought it was better to take a cautious approach with the vomiting and rule out food allergies before doing any invasive procedures which I was grateful for. She wants to start Faith on Neocate LCP but after some research when we got home and talking to the metabolic dietitian we came to the conclusion that Neocate LCP wasn't going to give Faith enough calories as she needs a lot for catch up growth. So I rang our doctor and got a script for Neocate Advance. I am quite nervous about putting her a different formula as this one has protein added and up until now we have been protein restricted just in case that was what was causing Faith's vomiting. I think that it is just formula in general that is causing her vomiting but we have to keep trying.

I have heard through various forums that a blended diet can reduce or even in some cases get rid of vomiting. This makes so much sense to me as when we were stuck last year without a formula we blended food and put it down her tube and during that time we had none or very little vomiting and gagging. When I talk to some professionals about this they are very apprehensive and not really into it but I really do believe that it could help Faith. It has to be worth a try. I was told about a book called Super Nutrition for Babies: The Right Way to Feed Your Baby for Optimal Health. I looked at it on Amazon and it looks like a fantastic book on learning about nutrition so I ordered it. I also read that having the right blender is also important so I have been doing some research into that too. After all the vomiting we have had the last week, I couldn't bare her losing weight and seeing the little ribs show, then I know that she needs more food but we are not at that point thankfully. It is so tricky trying to figure out the right balance. 

The plan it to try Neocate Advance and slowly introduce a blended diet as well. We need to be continually looking at how we stop Faith's vomiting and after trying so many formulas in the past I really find it hard to believe that this one is going to work but it is worth a try since Faith's vomiting has increased. She is just getting enough formula as we increased the overnight feeds so at least we can do that to help. Even with the vomiting we seem to be heading in the right direction with her eating. Each morning I give Faith her bowl and I have my bowl and as I eat my cereal I eat some of hers and show Faith how and usually I get a smile and yesterday and today she nodded at me and I put some rice cereal on my finger and into her mouth. Very exciting. Slow but steady. I am not sure whether to be introducing the spoon again as she dislikes it so much, so for now it is my finger and other interesting food products that she will not reject.

Every day in our house has is our own adventure, whether it be cleaning up vomit, making numerous calls to organise deliveries, making shapes in play dough, watching the breeze in the trees or just thinking of new ways to make Faith's day interesting. Some days she sleeps more particularly after a long trip to Brisbane so we just take each moment as it comes and try to adjust to the continual change but we are moving forward and that is the important thing.

Eating is meant to be fun!

We met with our local speech therapist this week and she thinks that it would be a good time to start offering food again. We have had a break from offering food and have been sharing whatever food we are eating with Faith. We have been allowing her to play with it, poke it, push it, whatever she likes to try and get her used to food and learn that food is a friend not a foe. She hasn't grasped any food yet but she has had chocolate, Vegemite and yogurt on her fingers and some of it has made it to her mouth to taste. She has been taking little sips of water on occasions but not much as she just shakes her head. Faith needs to learn to hold onto a little bit of food and put it to her mouth but she first needs to learn how to grasp better. Faith can grasp her stacker cups, she pulls them out and if we hold a cup she can put the smaller cup back in the bigger cup. She is much better than she used to be, but it is a very slow process. Faith has definitely improved since we got the Stingray R82 pram, the tray on the pram gives her more opportunity to explore what is in front of her. Before Faith would spend so much time lying on the floor or sitting on the lounge and now she sits up her pram surveying the world and taking it all in.

Since we have been a little stuck for a food routine and with Faith's eating the speech therapist thought maybe starting a more definite food routine might help. Some ideas were

Breakfast

• cereal 
• strip of toast
• a small chunk of banana

 Lunch

• Strips of avocado
• cruskit biscuits
• pieces of soft cheese
• well steamed vegetables
• scrambled egg

Other ideas were 

• continue to offer water from the sippy cup (we have always been doing this) but we could try using a different colour sippy cup with either juice or flavored milk.
• continue with oral play to encourage Faith to put toys to her mouth
• keeping the same food for a few days so she has a chance to become familiar with them.  

We are happy to try anything and give all ideas a go. One of the ideas to offer a bowl of cereal when we have our cereal is worth a go, it would be good to try and break the current morning routine. It is so tricky in the morning as Faith usually vomits first thing or if not then shortly after we give her her zymil milk, we have tried different combinations and nothing seems to stop the vomiting. The last few mornings I have tried offering the rice cereal (as she is still on pureed food) and she either shakes her head, buries her head in her shoulder and starts moaning. On Thursday I tried all day offering food and playing with food but with no luck. In the afternoon Faith had a huge vomit and I was so discouraged. After an hour or so, I thought she must be so hungry so I offered her some pureed food and not only did she gag, she had another big vomit. I felt like such a failure, we just don't seem to be getting anyway.

On Friday it was pretty much the same, then came Saturday and no progress again. I have only just recently came across the babycenter forum for spina bifida and it is amazing, at last I have found a group of people who are experiencing the similar changes and have such encouragement and advice. It means so much and even reading the other posts are helpful. It is good to have a forum that I can go to for help but in some circumstances relay my experiences in the hope our experience might help or encourage someone else. Now, it is Sunday and early this morning we did have a tiny break through. I gave Faith her bowl of rice cereal, I tasted some and I ate my toast while playing with her food. I chose a rice cereal with no taste I thought why not try going right back to basics. I didn't offer her any with her spoon, as spoons don't seem to help right now, so I rubbed some rice cereal on her lips, I didn't make a fuss just kept eating my toast and she started making chewing sounds. She didn't gag, didn't vomit. Faith ate the tiniest bit of cereal. Wow! I hope this is the beginning of eating even if slow. I wanted to try more but thought better not and instead gave her little sips of water. Success!