Life goes on…

Sorry, it’s been a while since my last post. Edith was discharged from hospital on 18th April after 9 days. Life since our discharge has been somewhat different and to be completely honest, a massive struggle.

When you are mum to a new born and you are first discharged from hospital there are a lot of changes to get used too, this is something you expect and spend months preparing for, I was not prepared for the changes that lay ahead for us. I was not at all prepared for the emotional reality of it either. We arrived at the hospital with a child that ate 3 meals a day (one of them including, without fail, a MAN SIZE bowl of porridge) and left with a child that couldn’t eat anything orally at all. We spent time in hospital learning how to feed Edith a nutritional milk through her NG tube, this was by no means a difficult task but was quite daunting.

Mastering the gravity feeds…

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The nature of the NG tube means that every time you want to put something in, you have to draw something out. By checking the PH level of the content drawn out you can ascertain that the tube is still sitting in the stomach and has not moved out into the lungs, if you didn’t do this then there is a chance you could be filling the lungs up with fluid and not the stomach (OH SHIT!!!). We slowly increased the amount of milk that Edith was having and she seemed to be tolerating it well. We were using the ‘gravity’ method of feeding which meant that after doing the necessary checks we would fill a large 60ml syringe (minus the plunger) up with the milk and let it slowly drain in to Edith’s stomach. The whole process took about 25 minutes, which was a bearable amount of time to be holding a syringe in the air for. We felt confident in our ability to feed her and left the hospital feeling positive. The first few days went well apart from a minor evening feed hiccup, in which we put Edith to bed too quickly after her final feed and she vomited it all over her bed!! On the Friday after discharge Edith was visited by the community nurse (a nurse that looks after tube fed children following discharge). The tape holding the tube had become loose and she offered to change it for me. On lifting of the tape we could see that Edith had a very bad rash under it, suspected from not drying her face enough before re-sticking after her bath the night previous. We decided to remove the tube and swap it to the other nostril so to let the rash calm down and give it a chance to heal. The nurse explained that she encourages parents to learn to put their children’s NG tubes back down in the event they are pulled out by accident, this makes life much easier and avoids any out of hours or weekend trips to A&E. I took a deep breath as I looked at Edith’s little face knowing what I was about to do to her, I felt awful. It felt fairly strange and took all my will power not to stop when Edith became distressed (this is quite normal as it aggravates the gag reflex), I pushed the tube in to the right length and breathed a huge sigh of relief. I then had to test the tube to check it was in the stomach; I couldn’t get the syringe to pull back. We tried and tried but it appeared the tube had not gone into the stomach, it wasn’t in the lung or Edith would still be really coughing and spluttering. We couldn’t work out where it had gone so the nurse made the decision to remove it and place another one herself – Poor Edith 😦

The days following were the worst! The NG tubes are sized according to age (as far as I can gather) and Edith was noted as wearing a size 8, however, all the feeds following the change of tube were taking an hour to go through. I couldn’t understand this, we had just found our feet and then all of a sudden we were on our backsides! At 4 feeds a day this was taking up half of my day just feeding Edith and due to how I was feeding her this meant staying in exactly the same spot for an hour every time. This meant no time for play or trips out and if we did make it out it meant wherever we were if I had to feed Edith we would be hanging around for an hour at least. It also meant an hour of her 3 hour sessions at Springboard was taken up just for a feed 😦 As the days went by I became more and more frustrated, as did Edith. The milk was now draining in so slowly that it was taking ages for her to feel any satisfaction, therefore she would become really angry every time she was fed. I wasn’t surprised, this was a massive change for her as it was and now another change had pushed her over the edge. I thought we had this and now it was a complete disaster. One morning I just actually stood in the shower and cried, so much had changed. My thoughts turned to my happy little girl who loved her food, I thought tube feeding would make life easier and so far it just seemed so much worse. I longed for the life we knew before, every time I saw a food she liked, her bowls and cups in the cupboard, my heart would break for her. I felt incredibly low at this point and like I was drowning. I didn’t understand what had gone so wrong.

I called Edith’s community nurse on the Monday to see if there was anything I was doing wrong, she assured me that this was quite a normal amount of time for the milk to go through. I explained mine and Edith’s frustrations and she suggested a solution, a pump. We had been shown a pump in the hospital but as the feeds were going so well and so quick, we didn’t think it was necessary. The pumps are generally for children who need their feeds to be slower due to reflux but in this instance Edith’s feed would be delivered quicker than by the gravity method. The pump was ordered and arrived on Wednesday afternoon. Since getting the pump life has changed again but for the better. It’s such a wonderful piece of kit that needs minimal set up and delivers exactly the right amount of milk. Once you have started the feed you can go on and do whatever it is you need to do, it even has a little portable back pack that it sits in so you can use it whilst you are walking around the supermarket, the zoo, anywhere!!

Edith and I having a quick selfie; she was on her pump in the kitchen whilst I cooked the dinner!

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We are now settling in to a proper routine and feeling much happier. It will take a while to get used to not seeing Edith enjoy her massive bowl of porridge in the morning, but I keep telling myself it must be even weirder for her and hopefully this won’t be forever. Although Edith will need a PEG (permanent tube directly into her tummy) it doesn’t mean that she will never have any food orally again, she just needs time for her swallow to get stronger and we don’t know how long that will take to happen but I have every hope it will one day. I can’t wait to get the tube and tape off  her so I can see all of her beautiful face again.

We are so incredibly lucky to have loving family and friends around to support us, without them I would be lost.

5 thoughts on “Life goes on…

  1. Edith is such a fighter and I have no doubt that one day she will be eating orally again as she never stops surprising us all. You are such a great mum. I love reading your Blog and what lovely pictures 😘💕xx

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  2. I’ve just discovered your blog and have been reading all of your posts. What a gorgeous little girl Edith is and what an amazing Mum you are. My little boy was fed by an NG tube for 18 months and it is a tricky thing to get the hang of but the pump is an amazing thing that makes it so much easier! I hope you soon get the peg operation and you don’t have to place too many more tubes! I’ll be following your blog from now on. X

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  3. I can’t begin to tell you how incredibly proud I am of my daughter her strength and courage know no boundaries I will always be right here to support her through the highs and lows of hers and Edith’s life. And as for Edith she makes me smile everyday she is the most beautiful brave little girl and such a character she has been through so much so far in her young life but she is a little fighter and I have a feeling she will surprise us all in the future x x

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