Polly is tube free!!! 9 months spent pretty much inside our homes for nearly the whole world - wow what a year! A tough one for us all, each person with their own personal reasons. It’s felt incredibly hard mentally for me, moving into my Mum and step-dad’s house in March with no idea we was going into lockdown. So we was all in the house together, 5 adults, a baby and a dog. Then my brother came home from travelling making it 6 adults, very crowded and all the rooms were filled.
My main goal became tube weaning Polly, all day every day was food - feeding and drinking. It may sound like a typical day for most parents, especially those who have children who “don’t stop eating” or those who also struggle with “fussy eaters”. The weaning stage for any parent I think is stressful, the preparation of food knowing most of it may go on the floor, down their clothes/bibs or it just being a waste. The testing and trying out, I have heard many parents say it has been one of the least enjoyable parts of parenthood is weaning.
I think Polly was around 6/7 months when I tried her on purée for the first time, our feeding specialist hadn’t advised us to but I just went with the notion of what I thought was best. It was difficult, it became immediately stressful for me. Of course she sensed that I was stressed, children can and I felt it at every mealtime. She would just push it back out with her tongue, it was as though the coordination wasn’t there. But then my mum would feed her and she would eat! Maybe it was down to me being or feeling stressed about it.
At 1 years old we had a video fluoroscopy done at Great Ormond Street Hospital, this was to confirm whether she had a safe swallow or not which came back that it was safe! Hooray good news! We was over the moon with that, knowing we could actually push her more with drinking and eating. We had held back so much as we wasn’t sure if her swallow was safe or that she was aspirating - the liquid going into her lungs. So we started to push her more with drinking from beakers, we did try bottles but felt like that ship had sailed and also at 1 years old she didn’t need to have a bottle anymore. I did feel very sad over the fact she wasn’t drinking from a bottle, just missing the typical baby stage but then I suppose some baby’s don’t drink from bottles at all.
March came and we had made the decision to move into my mum and step dad’s house while we looked for our first home to buy, helping us save more than renting. We was so excited at the thought of extra help and maybe even going out in the evening for dinner, the cinema, or even a drink! Thinking that once the baby was down for the night my Mum could just watch her. Oh but what a short lived memory that was!! Two weeks after settling into our new temporary home the whole country went into lockdown! Ha! Couldn’t make it up could you!
So pumping on adrenaline at this idea that nobody had work, as a household we thought we could do more family things - board games, films, more help with the baby & most importantly weaning Polly onto solids. Let me just say that 9 months on from this idea I think we have watched maybe 3 films as a family and haven’t played one board game yet! The novelty didn’t last long at us all being together, I became stressed quite quickly over Polly’s meal times from the amount of people in the house. We had gone from just Dom and I taking it in turns, to another 3 people and a dog distracting her when she ate. It was impossible. Polly was much more interested turning in every other direction but to the food on her plate. I was worried about her developing a feeding aversion as I was trying to force the food into her mouth at one point & it just became quite a negative experience.
Dom went back to work (thank God) and I tried breakfast, lunch and dinner every day on my own. I didn’t give up, I prepared and tried every day with meals whatever they were, in the hope that Polly would eat them. I started to relax a bit. I tried to change my mindset that she wasn’t going to eat, rather than expecting her to eat. I made sure nobody walking past was distracting her, it’s just force of habit to pay a baby attention and not ignore them. But needs must! The TV became her distraction, we would pull up the chair in front of the TV and feed her that way. A bad habit to start mind you & completely going against what our SALT (feeding specialist) recommended. But it was the ONLY way she would eat at that point so I wasn’t going to stop doing it just yet. Polly was doing so well, then teething started again.
The dreaded teeth!! For those of you who don’t know it is also one of the worse stages of the first few years. Imagine growing teeth - ouch! For many babies and parents it’s sleepless nights, refusing to drink or eat because of the pain. Sometimes nothing helps! I might do a separate post on our teething journey once it’s complete and everything I used to help Polly. Teething when you have Down Syndrome is so much harder! Just another hurdle for us, teeth can come in much much later with DS. I read a post the other day on Instagram that said something along the lines of, if it lasts longer than a day it’s not teething. Well incorrect, let me tell you Polly teethed for months before some of her teeth came in. Waking up all night, crying, also not eating or drinking much. It can be so much longer and harder, difficult to watch as well. You question when is it good to give Calpol or Nurofen, because the way they can carry on you feel like it could be daily for a few weeks! Calpol has never worked for Polly, paracetamol in general has never touched her, so we use Nurofen which doesn’t deplete her glutathione (look that up!).
Throughout this year I spoke to her SALT once a month. It became very repetitive, not really much feedback from them for a while until I sent video’s of Polly eating and drinking to another team member. They gave me so much constructive feedback that I was able to make some changes on how I fed her and it worked instantly. It didn’t mean she was properly eating but she did do lots better. Then teething started again for a good few months and when I spoke to her SALT it was always “nope no improvements she is teething again”. It does become an obsession because you are counting every mouthful they have, wondering if it’s enough.
We then got a new dietician back in August - he is the person that focuses on what Polly eats and the SALT woman is looking at how Polly eats. The new dietician was a breath of fresh air! He gave us the push we needed and said ‘let’s give Polly the absolute minimum amount of calories with her milk down the tube, in the hope it encourages her hunger and she eats more’. So it became two feeds a day, 600ml of milk (21 oz), 300ml in the morning and 300ml before bed. I had never taken this plunge before because I was so worried about her starving, but looking back on how chunky she was I don’t think I had anything to worry about! Then in between feeds would be food and see how much she ate. She started to get the hang of it more, then we would get a set back with teething or she just wasn’t hungry enough. I also tried messy play with food, brave I know. I set up a paddling pool sat her in that and tried jelly, custard and spaghetti on different occasions so she could become
I set a new routine of waking up doing her milk feed through the tube, like you may do with a bottle in the morning. Then breakfast couple hours later, then lunch then dinner and milk before bed. Sounds straight forward, it wasn’t. I was particular about what plate and spoon was used thinking it worked once so it will work again. But that day Polly may just spit it all out and we got nowhere. I would stress, Dom would worry she is starving so say just give her milk and I wouldn’t give in. But for an easier life sometimes he done her milk instead of food which didn’t help. Every meal time was stress.
Then things got better, I don’t know how but she could eat, I knew she could. Come August she had been eating solid foods like sandwiches, toast, pasta, and she actually hated anything puréed at that point. I would break things down into small pieces, but there wasn’t a problem with having to mush it down just making sure the pieces were really small. I wanted a referral for a peg - a tube fixed into her stomach permanently. This is a decision I didn’t take lightly, I looked at all the pro’s and con’s. The wait list can be very long, and we wasn’t actually making much progress food wise so I thought to put her on the list and if it comes to it and she no longer needs it then amazing. Then of course if she needed the peg it can be used just for medication and fluids, we can keep on feeding her food all day. It did mean an operation and her being put under again. Which runs its risks. I was looking at so many options such as feeding programs (which cost a few thousand!!! Not an option available to us at that moment), the fact she may have a tongue tie and noticing in actual fact she has a lip tie. I never even knew lip tie’s existed!! So I was on the phone to GOSH again for a referral to ENT, we had an appointment quite quickly actually (benefits of COVID) they confirmed her lip tie. They didn’t confirm that it could be affecting her eating, but it was a possibility and I was adamant that it was! So she got put on the list to have it cut, again she would have to be put under which I was fine about at the time.
Fast forward to October, her eating had improved, she could eat, she just chose not to sometimes or to just spit it out. Polly’s tube was being changed every couple of days at this point, I was having to pass it myself which I have always done and some days I would just leave it out till bedtime. It meant she didn’t always have her full calorie intake, which was again stressful but I needed to push her and she did eat better without the tube! So, October was a big month of change, she was booked in for tests at GOSH which needed to be done before she had her peg inserted. It was also the month we had her meeting at a mainstream nursery I wanted to send her to. The meeting consisted of a community nurse attending to give training to the staff on Polly’s tube and what they had to do to feed her. Again, stressful for me and handing over that job is nerve wracking because it’s something I have always done. But I left there feeling confident in the staff, they also had to have a health care plan in place for Polly’s heart medication.
The following week Polly started her settling in, which meant being at nursery every morning Monday - Friday. I was sat at the back of the room for the first few days watching her, which was so nice to see just the whole set up and how all the children are together. I was surprised at how clingy she was being with me though, something I never imagined she would be like as it’s not in her nature but it’s a big thing starting nursery!! That was the last week of October and Polly was there for snack times meaning all the children were sat on two tables facing each other to eat. I just knew that would only benefit her watching other children eat. Saturday came, and we was sat down for breakfast with Polly in her high chair. I think the tape on her face was loose so she hooked her finger round the tube and pulled it, I sighed and said right it’s coming out then. Which has happened many times before, I would just put it back in before bedtime. I can’t even remember how much she had for breakfast or if she even ate it.
Dom was off work that weekend, it was 31st October - Halloween and we was celebrating at home (of course) by all of us dressing up and eating party food. Dom said let’s just leave the tube out tonight, if she wakes up because she is hungry then we can put it back down. I was reluctant to do it but I agreed, mostly because I was worried about lack of sleep again that I would get if she woke up in the night. So dinner time she had party food and I have never seen her eat so much! I was stunned. She was eating like she had never eaten before, it felt very overwhelming to see. Just an incredible feeling of pride. That night she slept through, the next morning Polly ate her breakfast for the first time in months. Like she actually ate it like she was hungry. I couldn’t believe it. I didn’t want to hold my breath and say yes she is eating leave the tube. We said give it 48 hours and see.
Saturday 31st October was the last time Polly had an NG tube inserted. She has only improved with her eating since! Every day was wow another day without a tube, and now it’s been 8 weeks. 8 whole weeks without a tube, and she even drinks milk from her straw cup sometimes. She has a thing where she spits out the last bit of her drink which drives me insane, sometimes it’s where she forgets to breathe when drinking and instead of swallowing the last bit she spits it instead to breathe out. I believe nursery is exactly what she needed for so many reasons, seeing the other children eating she just wants to copy them. She has even started to feed herself at 22 months old, which may seem delayed to some parents but to me it’s not about her age it’s about the fact she does it. She is learning and after being tube fed for 20 months of her life it’s a huge huge milestone.
I had all of Polly’s tube feeding equipment collected just before Christmas - her pump, containers, tubes, giving sets and syringes. 10 boxes and two bin bags full of equipment. It was a moment I needed to document. Mealtimes have gone from 1 hour of sitting and eating to sometimes 15 minutes & she has eaten all her food. It’s all dependent on her mood, I’m a slower eater and her Dad is the fastest eater I have ever seen. So we shall meet in the middle!
Although 2020 has been a tough year for the whole country, and for us as a family with the hurdles we have faced again health wise with Polly. My main and only goal for this year was for Polly to come off the feeding tube by the end of 2020. So many times I didn’t think we would get there, particularly in September with just a few months left I didn’t think it was possible.
Yet here we are in December 2020 and Polly Blossom has been 8 weeks tube free, all equipment has been collected. There’s no going back, only forwards for 2021!
