Here we go...again

Mutton Bird Island - Hubby, Faith and I climbed to the top.
Faith ridding in her pram! Nothing is impossible!

It is amazing how life can change so quickly in a matter of hours. 

So, drum roll... we decided to give Faith some blended food through her button. It was tough, in that we wanted to do the right thing. The right thing for Faith. I thinned out Faith's blend and hubby and I, prayed for wisdom, strength and the blended food went easily into her button. It was ok, it is basically a juice. We are not removing formula feeds at this stage. We just will give her a bit of blend into her button before she has her formula and she hasn't vomited since. We were always giving her juices into her button, this is just a different type of juice. She had over a hundred mls this afternoon and she is already more settled, more smiles more giggles and I am sure more sounds of words. Maybe I am imaging it. But, she isn't sweating as much and looks happier. We shall see how we go tonight and over the coming days. I am hopeful this will turn a corner not just for Faith but her eating food again. 

We had her sitting outside this afternoon and she was leaning her head towards the small bowls of water she was playing with and trying to drink them. All positive signs I think. What a sweet little girl she is and even with challenging times she brings us laughs and happiness.

Choices

It has been such a long time since I posted. The only real reason being, life is crazy busy but what has been happening?

Faith turned the big three! So exciting!

We are loving living in a low set house, nearly been here a year now. We can go much more easily and we see nature in action. The blue wrens and Willy Wagtails are a source of delight for all of us.

Faith has been really well and our trips to Brisbane are less frequent due to me saying "do we really need to visit so regularly".

We have been on our first family holiday and we explored Coffs Harbour. Loved it. I think I relaxed for the first time since Faith was born. I am not going to lose that feeling. I must keep it. So we can all survive. I got to have a ride in a helicopter as a birthday present. What a fabulous adventure. Faith turned a corner and now happily sits in a swing and loves being pushed in it. Must get one at home.

But, today I find myself at a cross roads. Faith is getting fatter, nearly hit the 10 kgs or maybe she has (I haven't weighed her in ages.). But our biggest problem which isn't a new one but I thought I would never have to say it. Faith is vomiting and vomiting. It's the formula. She struggles to eat anything again sadly. All her nourishment goes through her button and she is gaining weight but the vomiting usually gets worse and worse the longer she is on formula. She isn't sleeping very well, hasn't been since the reduction of food. So we are all sleep deprived. Some more than others.

What do we do? I am at a loss. I have so much information at my finger tips but after such a long struggle with feeding I don't know where or how to start any more. Fear is a issue. Failure a biggie. 

I know that if Faith can eat, the vomiting will greatly reduce or even disappear. I know that if I give a blended diet into her button the vomiting will decrease and she will sleep through the night. So, then, why don't I give her a blended diet into her button? Because I have no support to do it. I am on my own. If I blocked her tube, I hate to imagine what the hospital would say or even how they would react. I feel like I am on the edge with them. But this is the best option for my darling. I posted on the Facebook forum Blenderized Food for Tubies and apparently the size of Faith's tube isn't an issue and most do it on smaller. So, should I try? That is the question. I am at the end of myself, the 24 cloth nappies that are used to catch the vomit are continuingly vomited on, washing, dried on the line and reused. None of us, more so Faith, can go on with this vomit. What is best and what is right? 

A Catch Up - Tube Free

It has been a while since I blogged, I don't usually leave it this long. The reason being is life has been quite crazy for us. The wonderful aspect is Faith is still tube free and is talking more (new sounds, that I hope will turn into words soon). It is a hard road feeding Faith, she still won't take food off a spoon or through a sippy cup, she insists it has to be through a syringe. It is much better of course than through a tube but hard work as she still doesn't eat a huge amount. I have to keep reminding myself that it is thought that tube feed kids are 30% overfed so I need to remember that. I always thought Faith was overfed from the moment she was born but as she was in NICU and I didn't get a voice in that regard, I just had to trust they knew best.

I can't believe it has been only just over 4 weeks, feels like months and months. Faith no longer looks like she is losing weight which is a wonderful wonderful blessing. Her tummy is filling out very slowly. Still haven't been brave enough to weigh her as by doing so it isn't going to change anything but stress me so I will wait a bit longer. Faith currently has a UTI so she has been feeling rather unwell and it has affected her eating but she isn't vomiting and that is a big blessing. The weather here has been so hot we haven't managed to get out, hiding away in our air conditioned comfort. Don't want to take a chance with Faith getting dehydrated. I know Faith would love to get out and so would I.

What is Faith eating? She is eating her blended diet with a few supplements added and some extra fruit puree to give it a yummy taste. She seems quite happy with it. She isn't that keen on tasting new foods but we are still trying. I really hope she will soon try some other yummy food so she isn't always eating the same thing. We are treating her UTI with antibiotics and starting doing in and out catheters just while she has the infection. If we do it all the time it increases her infection rate. Faith isn't eating much when we go out so that is a area we need to work on too. But for the moment we will just keep concentrating on eating and having fun.

Day 31 - No NG Tube - Brainstorming

I forgot to post this yesterday! So here it is

I must admit I thought we would be further along but I should know better considering Faith always like to do things a little different to the 'norm'. Yesterday morning I was happy that she had ate more than the day before and maybe we were turning a corner but afternoon came again and she didn't want to eat, only have some water/vitamin drink, trying not to get discouraged. But it is hard not too.

I was looking for ideas and ways to try and offer food differently to Faith and came across the following blog Tube Weaning - Graz Style, I have read it before but hadn't gotten all the way through. When reading I discovered they were syringe feeding pureed foods and we have been doing that with water and we were hesitate to do the same thing with pureed foods in case she got an aversion to the syringe, it was sort of our safety net for getting water/vitamin drink in.  I realised that we needed to take every opportunity for Faith learning to eat and so this morning I tried some pureed food through a syringe and it went ok, afterwards she actually took more food through her modified sippy cup so it is a help. I will keep offering the lovely collection of spoons we have. 

I have a friend who weaned her little one off a NG tube a couple of years ago but don't know anyone else who has been through such a journey or going through that journey now, I wish I did just so I have some one to talk to about what it is like for the parents and how they made it through each day. Oh, I just wish that each day wasn't so unknown with food, I can't tell from one day to the next what will happen with Faith's eating. Will she eat or not.

Maybe we need some more food play.

Day 28 - NG Tube - Creeping upwards

I must admit I came pretty close to giving up yesterday and thinking should we just put the NG tube back in, but thankfully, hubby encouraged us to other ideas. Faith got to the point yesterday, Christmas Day and she was barely eating. We were questioning ourselves, what is causing this? Her swallow is fine, no signs of a shunt malfunction, no obvious signs of a UTI, what is going on? We could see Faith was really hungry but why wasn't she eating?

We shifted around her sippy cups and even tried a bottle, no luck. mmmm baffled. By the afternoon after her sleep we had Faith's nasal prongs off to give her cute soft cheeks a rest and her nose was running, and also her eyes were quite moist. Did Faith have a little cold and this is why she isn't eating? We gave her some panadol and laid her down on her cow pillow and put some water combination (purelyte, sugar, poly-joule and water), doing whatever we can to get nutrients and calories into Faith and squirted some into her mouth with a syringe into her mouth. Over afternoon she manged nearly 170mls of our water combo. I asked her if her throat was sore and she nodded. Was this the cause of her not eating. Only time will tell.

This morning we have seen a huge improvement with Faith, she has at least doubled what she had yesterday still not a huge amount but on the way up we hope. Giving her some panadol too and that is helping. Faith has been so much happier, playing and talking. It has been a much much better day. Just need to keep having faith that we will get there.

Day 22 - Tube Weaning - confused bubba

I found the below quote in a book I was reading today by Beverley Lewis and I wanted to share it with you.

'I am on a journey and sometimes it seems ever so long, still little by little, I'll find my way with the help of my heavenly Father. I can never go wrong by clinging to His hand'
 
Tuesday night came and we were worried Faith still hadn't eaten much, she was sleeping peacefully but still not wanting food. Was it the UTI? The antibiotic? We both went to bed in low spirits and anxious minds. Midnight came and Faith decided she wanted to eat again and she ate a lot more than usual yesterday which was great. But one big thing is that Faith seems confused with her yes and no, as sometimes when she is shaking her head answering no saying I don't want food or whatever but meaning yes so we managed to sneak a mouthful of food in and away she went eating and eating. She still struggles to eat in the afternoon. I think that is due to her rising early and then having her one and only nap from 9am - 12noon and then she gets too tired. It is a wonderful relief to see her eating again.

I wouldn't say we had a good night last night. Faith woke alot and even though I am more than happy to feed her if she is hungry, last night she just didn't know what she wanted. She would have some food and then decide no I change my mind. It was so confusing. As I knew she was hungry but couldn't get her to eat. As the night wore on we all got more grumpy and not knowing the best way to help her eat.

By morning we were looking at possiblities of what was now stopping her eating compared to yesterday. The only real change had been changing the colour of nuk sippy cup from blue to green. Surely that wouldn't be why? Anyway, this morning when I had put her back to bed and didn't know how to proceed and I said ok to her, little bug we are going to give you some food and then you can come back to bed. I picked her up and tried to put her in the stingray pram and she shook her head saying nah nah. So I said ok we will sit on the lounge then. And then she had a nice big breakfast in the blue nuk cup no green one in sight. She also had some water too. She was much more settled and I put her to bed and not long after she was asleep.

Day 20 - No NG tube - Patience

Wow, nearly 3 weeks since we took out Faith's NG tube. It feels like it has been months and months. Some good news is that Faith has slept through two night's in a row and is more happy and willing to play more. She looks better and is stronger. Faith is being her cheeky self and definitely asserting what she wants at the moment, she doesn't want food. The UTI is going to play a part in her not taking food but it doesn't make it any easier to handle her rejecting food. She is eating a very small amount but just not enough. To keep moving forward we have introduced the spoon again in the hope that soon she will move on from her spoon aversion. Feeding dolly and the puppets are part of the routine to help her learn. We have a wonderful selection of spoons and cups, all different sizes, colours and textures. 

Faith is taking her medications wonderfully at the moment, we just squirt them into her mouth and it is done. So easy! All we needed was to to trust Faith that she would take it and get used to that part of her routine and she is doing great with them. The medications taste horrible too so we are very proud of her.

We are using a visual time table and then have the pictures from the visual time table stuck around the house, the bathroom door, TV, playroom, change table, all those sort of places. I think in time it will help her communicate better but it is patience that we need right now. Patience that Faith will eat soon, patience that we can do this and patience with each other.

Day 18 - NG tube free - struggling!

Sorry it has taken me so long to come and update what is happening with Faith but my days have been a great struggle, emotionally and physically. Some days just not feeling like they will end. This is where we are up too. We have been going up and down in volume of blended diet and were progressing well and a few days a go we hit a real low where she refused food for 24hours straight. It was hard being patient but we had to, it is after all Faith's choice. With Faith's intake of food crazy to say the least we get up many times a night sometimes she will eat huge amounts other times she refuses. We have also had a trip to Brisbane to get bigger AFO's and leg wraps and also had a catch up with the speech pathologist. 

One of our biggest challenges over the last week has been getting Faith to take her medications. When she doesn't take them it does set her back and make it harder for her to move forward. As of yesterday we have solved that problem, previously we couldn't get Faith to take her medications directly into her mouth we had to disguise it in her food. Now she has decided she will take it straight out of the syringe so that is one less burden to carry and a wonderful relief knowing she is getting the right dose of gabapentin and keppra.

Another challenge we are facing as of today is that she has a UTI which explains her refusing food the last few days and her extreme irritability. It always seems to happen on the weekend. Luckily we have some antibiotics on hand just in case. At least we know what was causing it but it doesn't make it any easier when she refuses food. I just see her thin body and my heart aches and my mind struggles to keep going but knowing that she is so much better since coming off the NG tube but the process of sorting this all out it far and above harder than I imagined. Thankfully she is taking her antibiotic straight in her mouth and being very brave about it. I love when she smiles or reaches out for me, my heart leaps for joy. So, that is where we are up too, still offering and offering and doing our very best to be patient with Faith and let her get there when she is ready. She will get there it is just a bumpy ride until we do.

Day 10 - No NG Tube - More Smiles

Faith is still tubeless, yay! And her pattern seems to be, eat more one day and eat less the next but slowly increasing in each days volumes so overall we are seeing a good volume improvement. But some of biggest challenges is that eating causes Faith to tire quickly but she is getting stronger. We had to cease weaning her medication, gabapentin as she was getting quite a lot of withdrawals from it and it was and is hindering her moving forward. The withdrawals appear to be change in temperature, irritability, and not being able to sleep at times. So, apart from what is going on with her body from having no NG tube, the poor little girl has to combat the gabapentin withdrawals. Faith hasn't eaten a lot of food orally in over a year and so the process of eating is tiring her greatly so she is sleeping a lot and at times over tired so not sleeping making it harder for her to cope. It is a crazy combination at times. 

Last night was particularly challenging with Faith waking for food at 11pm, 2am, 5am etc. So it has been a long day for us already. But she must have turned a corner as she is sleeping a lot more today in comparison to the last few days and of course in the back of our mind we have other causes of varying symptoms like shunt malfunction but her fontanelles are still soft and she isn't vomiting so I think it is just her adjusting to her new found identity of being a oral eater. It is a emotional roller coaster and I do long for our once 'normal routine' but less the NG tube so I look forward to finding another new 'normality' again.

We are still in touch with Faith's speech pathologist and it is wonderful to have her there if we need to brainstorm anything. Though it has only been a 11 days since we took Faith's NG tube out it feels like months have passed since then. I keep reading the quotes and sayings for encouragement and perseverance and find them a good reminder of the bigger picture and ways to handle various situations regarding Faith's approach to eating food orally, wow, she is really eating orally. Yay! 

I think we were all feeling a bit flat today after sleep deprivation and working so hard to make this work and it is working. I see Faith's tummy popping out more and I love it. A friend dropping over this morning, a mum with two little ones and what a great blessing it was, yes, she is sleep deprived too so when our minds wander we both don't really notice cause we are on the same page. It was good just talking about stuff and hearing about her life and what is happening as sometimes it can be hard when we don't have a chance to share others lives it makes one feel refreshed sharing in someone's else's life. She even brought us a home made bacon and egg pie and some eggs. How lovely. Then, later in our day we are invited to another friend's house for afternoon tea. My friend's little one had a NG tube and food aversion a while a go so she understands what we are going through. While we celebrated how Faith can eat now and as I was preparing the food she said don't be upset if she doesn't eat as much as she usually does as when little people go out they get distracted and don't eat as much. And that is what happened, Faith had a small snack and wanted to continue being involved with the other kids. Another special things happened that we haven't seen in a week or more, Faith started interacting with the other little kids, she laughed and watched and had so much fun watching them play and entertain her. Our little happy girl is slowly finding her 'normality' again. Thank you God for friends!

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!

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#

21 Days of Gratitude - Day 21 - Gratefulness!

I can't believe that it is day 21 of 21 Days of Gratitude! It has been and still is such a good exercise and blessing to have a look at my life every day and find what I am grateful for. Since I started the 21 Days of Gratitude journey, I have looked at my thankfulness for friends, family outings, joy in rainy days, beliefs - faith, hope and love, a simple task to some but the joy being able to eat, celebrating my daughter being on a 100% blended diet and my garden. I know there is many more wonderful blessings of things, people and circumstances that I need to be more grateful for and share with those special ones how much they are a blessings to me. The last few days for our family have been quite challenging and will continue to be for a little while yet as we are preparing for our daughter to be weaned off her NG tube so there has been a lot of emotions and tasks running all over the place. But amidst the craziness of it all I can see my little girl getting stronger and more determined in her actions, saying no and learning to push things away she doesn't want and of course a learned skilled of vomiting up her NG tube. Of course, my husband helping us get what we need done to help her achieve this massive goal of becoming an oral eater once more. I am so grateful to have him by my side on our journey.

I hope that anyone who has taken a moment to read my blog has stopped to think what you are thankful for because there are many blessings all around us just have a look!

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.

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!

Let's just do it!

We all have been working really hard on Faith's feeding program and after a week break due to Faith being so unwell and speaking to the speech pathologist on Thursday we decided that we should up the pace and see what we achieve as we don't want this NG tube anymore. So on Friday we began, first thing when Faith arises I give her a water bolus down her NG tube but thought why don't I try and get her to drink the water instead and then just put the remainder down. She took the water quite happily, not a huge amount but a start. Part of the change is programming not just Faith to eat and drink orally but also us. For over a year now we have been tube feeding and now I need to re program myself to push oral first and it is a big adjustment. I am excited about it and just want to get on with it. I thought to help us all get into a routine, we will have a 'normal' feeding time, water and eat together at breakfast, then at morning tea, I offer water again and she did really well, trying to lift her sippy cup to her mouth and when I wasn't looking tipped it upside down on herself. Cheeky monkey. 

Faith sleeps through lunch time so we skip straight to afternoon tea and I offer water again and eat with her and she seems quite fascinated, good I think. Late afternoon is the tricky time as Faith has her energivit formula and it does upset her tummy, so made us think about whether to increase her blended diet and try and remove the energivit formula in the afternoon. So, Friday evening we have a family dinner of tacos, self serve so Faith doesn't feel pressured, she plays enthusiastically with her plate but isn't that keen about having food on her plate. We have lit candles, the candle setting on our table has a tiny bird that appears to circle the tea lights so Faith knows dinners are special and a time for family. We only had one vomit on Friday and that was as soon as she woke up in bed otherwise she was fine. Faith really didn't want to brush her teeth so after she had done so very well with all the water we decided we wouldn't push her. Tomorrow is another day! So that begins day 1 of let's just do it. I look forward to tomorrow and how we will progress.

'Just keep swimming'

I wrote the below yesterday when we were having a bad day, it sort of continued into today and I just wish it were over, sometimes are so hard and feel I like I won't make it through but I know I will I just got to keep pushing on. So here it is, one of many days I don't really want to remember.

I really loved watching Find Nemo and loved how Dory would say 'just keep swimming' and it makes me feel like 'just keep swimming just keep swimming' and I will get there eventually. I feel I just need to write. Today has been a hard day. It started last night, when I thought it would be a good idea to give Faith a kids probiotic, which I do nearly every night but last night I added a little more than usual to her blend (as she is on antibiotics) while it was warming and I didn't see but it had formed little clumps within the blend so when I pushed Faith's blend through her tube, it got stuck, but it really got stuck, I tried all the declogging ideas I could think of. Nothing worked so I had to wake Faith up, pull out her tube and and put down a new one. This has NEVER EVER happened before and believe me, it won't again, I felt like a failure, angry that I could be so stupid, all those type of feelings. New tube down and Faith wide awake and lies in bed annoyed that she has been woken up. I don't blame her, I felt annoyed at myself. The old tube wasn't savable and now I was left without a spare NG tube. I went to bed slightly sadden by the whole event, hoping a new day would bring a renewed strength.

The day just didn't start right, Faith was sweating from yet another UTI, we started another round of antibiotics, different ones this time. Faith was irritable which was understandable but I had to keep entertaining her so that she wouldn't realize that she felt sick and then vomit the antibiotic. Oh, why is it so hard today, the poor little thing was wet all over and not happy. After her formula feed in bed I thought I might go quickly into town as I needed a sugar bowl (another funny story for another day, let me just say, I am so over SUGAR BOWLS). As we were driving down a hill on a busy road, Faith starts looking like she will throw up and she did, which in itself isn't a biggie except when the NG tube comes out her MOUTH! I can't believe it! Some tactical moves later I am on the side of the road running to the side of the car, swing open the door and pull the tube back out through her nose. I am not parked in a particularly good spot so I make sure she is ok and head to a car park to sort it. My brain is on overload, all I can think of is I need to put it back down and my husband isn't able to help me today. Telling myself I can do this I can put it down I need to be able to do it on my own.

After we have wandered the shops I might say not really that happy, I have my sugar bowl and bonus milk jug and head to the car with a very sleepy Faith, also trying not to let her go to sleep as her oxygen was at home since we are allowed awake outings with out it. I have had enough, I head to the car and on the way home she looks like she is going to be sick but isn't but I am still overwhelmed by my disaster of morning, but it doesn't finish there. It is Faith's feed time so I rush inside and put the air con on as it so hot and organise myself. I put the NG tube down, encouraging myself on, praying too. It is down, I aspirate, no aspirate, I can't beleive it, it must be the right spot, I think it is but she is so hungry there is no food left in her tummy. But I have to be sure so I get her to drink some water and still nothing. I am going to have to pull it out. Several attempts later after Faith deciding she had had enough, she continually pulled the tube before I could get it in and then she'd just vomit it up. It wasn't working, I called my husband and said I need some help and he came home and we succesfully put it down, just having him there to hold her head and steady her made the difference. Definietely a two person job. Faith is now fast asleep and been so for a few hours and I am trying to collect my thoughts and re center myself. I am exhausted!

We have been working on Faith's feeding program, oral alerting etc for the last several months with the end goal being Faith eating purees again. But after today, I realised that I need to put ALL MY EFFORTS into getting Faith off the NG Tube, I know we have been putting alot of energy into but I came to realise even more that this has to be our MOST important priorty as she can't continue with it and we need the NG TUBE TO BE GONE. It is hard and I must press on!