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 26 - No NG Tube - Anxious

I thought I better come back and write where we are up to so the days don't just blur into many which they tend to do more and more lately. I am trying hard to keep a record of our journey so we can learn from it. It has been 26 days since we took Faith's NG tube out and I must admit I am discouraged and sadden at this point, why? Because the last few days she hasn't been eating very well again. Completely refusing food today not having much at all. We have changed cups, changed tastes and even tried offering her a bottle. I cradled my baby now a big girl in my arms and she refused the bottle but reached out and touched my face ever so gently. 

My husband and I are struggling, we are trying so many different things to help her learn to eat but today isn't good. On the bright side she is talking more and is at times very happy, usually after a small amount of food and to the other extent where she is screaming and screaming. Hunger pains I would think. We are anxious about where we are at and how to help Faith further. We cannot fail her, we cannot send her back to a feeding tube and endless days of vomiting and lying on her back due to her vomiting more and more. Now she sits up nearly all the time and is becoming more grown up. We cannot fail!

As Christmas Day isn't far away in our part of the world I long to have Faith enjoying her surroundings more and understanding Christmas but it is all in time but be it ever so slow in our world. We took Faith to Carols by Candlelight last night and it was the first time we have been out amongst so many people in a very long time. Faith had a wonderful time watching all the other kids play and sing. She looked so alert and her blue eyes beaming intent on not missing anything. We caught up with friends chatted and laughed and enjoyed the coolness of the evening. I wonder what it is like to have my little girl play and dance in the moon light?

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.

Sharing a yummy recipe - egg plant parmigiana

We got some organic veggies last week, home delivered from a local farm, very exciting! Included in the box of delicious produce was a egg plant and I haven't cooked with one before. I loved it and wanted to share the yummy recipe I found on taste.com.au

Egg Plant Parmigiana

Ingredients
3/4 cup plain flour 2 eggs 2 cups dried breadcrumbs 2 eggplant, trimmed, thinly sliced (see note) vegetable oil, for deep-frying 1 1/2 cups Italian tomato pasta sauce 1/4 cup grated tasty cheese
 
Method
Bechamel sauce
40g butter 2 tablespoons plain flour 1 1/4 cups milk 1/2 cup grated tasty cheese
0:30 To Prep
1:00 To Cook
4 SERVINGS

1. Make bechamel sauce Melt butter in a saucepan over medium heat until hot. Add flour and cook, stirring constantly, for 2 minutes or until mixture bubbles. Remove from heat. Slowly add milk, whisking constantly. Return pan to medium heat. Cook, stirring with a wooden spoon, for 8 minutes or until sauce comes to the boil. Remove from heat. Add cheese. Stir until melted. Cover surface with plastic wrap.

2. Combine flour and salt and pepper on a large plate. Lightly whisk eggs and 2 tablespoons cold water in a shallow dish. Place breadcrumbs in a shallow dish.

3. Lightly coat each slice of eggplant in seasoned flour, shaking off excess. Dip in egg mixture, then breadcrumbs, pressing crumbs on with your fingertips to secure.

4. Pour oil into a large saucepan until one-third full. Heat over medium-high heat until hot (see tip). Cook eggplant, in batches, for 2 minutes each side or until golden. Transfer to a baking tray.

5. Preheat oven to 200°C. Grease a 6cm deep, 18cm x 24cm (base) ovenproof dish. Line base with eggplant slices, overlapping slightly. Spoon over 1/2 cup pasta sauce. Repeat eggplant and pasta sauce layers 2 more times.

6. Top with bechamel sauce. Sprinkle with cheese. Bake for 20 minutes or until cheese is golden. Stand for 5 minutes. Serve with grilled chicken, lamb or pork.

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.