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.