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!