Day 6 - No NG Tube - Small steps - Life is changing

Faith's learning area, lots of things relating to food

Yesterday Faith ate beautifully drinking heaps of her blended diet, I didn't get a chance to make it to the computer as I have catching up on my housework and some sleep. I also spent some time yesterday making a learning room for Faith. When she had the NG tube she spent a lot of time lying down because she vomited so much but now she spends most of the day sitting up which is wonderful. Life is changing and in so many good ways. 

She is starting to talk again and she was happy to have a book read to her this morning as previously she was just to tired. Faith still doesn't want to play but small steps in the right direction. She is looking more alert and is much more vocal in her actions, saying up up when she has had enough food to whining when she doesn't get it her way. Today she hasn't had as much blended food as yesterday but that's ok, Faith needs to choose to eat and lead us the way she needs it to run. We keep offering but only twice and then start playing again or do something else. Offering a short while later. It is hard to watch when I really want her to eat more and she doesn't want any more.

It is 36 degrees plus here today so I am very grateful for our new home with its air conditioning, with Faith not drinking a lot we can't let her get dehydrated. We still have had a higher than normal temp for Faith in the morning and each day since Friday we have wondering what it is about. It leaves as quickly as it comes but still concerning. But after some more brainstorming we came to the conclusion it might be that one of her medications isn't being adsorbed as consistently as when it went down her NG tube. We were weaning her off gabapentin before we took her tube and still are. After some reading on the net we thought it might be the gabapentin doing it. As she was on it for neuropathic pain and so her body is probably just trying to sort out its new rhythm. The temperature isn't lasting as long each day now and is not affecting her as much.

 It is good to just be at home and find a new routine as we don't have one. Faith used to have one sleep in the middle of the day, now she has two but as I say this, she is lying in bed complaining and every now and then talking, this is her second rest, maybe she doesn't need it, oh, so confusing. The breeze is hot and my washing drys nearly instantly all the while I am inside drinking hot tea. There is so much change around us, Faith has one less tube on and now when she is asleep I don't have to stand over her cot pushing blended food down her NG tube.

I am still using the same recipe for her homemade blend just adding a bit of fresh juice and electrolyte to it so it isn't so thick. I didn't expect her to drink her blend as I thought she would go straight to purees but the speech pathologist did tell me that Faith has to learn to eat all over again so going to a sippy cup to drink her food is just a step in getting her to eat via a spoon eventually, small steps. Faith slept through to 5am this morning which is a huge improvement on 2am feeds but I nearly was glad of a 2am feed so that she got more food into her but very pleased for the sleep just the same.

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#