Oli was born prematurely because his bowel had ruptured due to a blockage of meconium. As a result of his ruptured bowel Oli had a colostomy for the first 4 weeks of his life. From the very beginning Oli has had issues putting on weight. It was soul destroying when we took him back to the hospital two weeks after being discharged and were told he hadn't put on a gram, in fact he had LOST weight. I had spent hours and hours feeding this baby who was so unsettled all the the time simply because he was STARVING. No matter what I would do he was always unsatisfied.
When Oli started solids it was like a switch was flicked. From 1 week of age Oli has had apple puree with his creon. Creon is a pancreatic enzyme that assists in breaking down fats and proteins that the average persons body would do for them. Because of the sticky mucus in the body of a person with CF the enzymes are trapped in the pancreas and unable to get out. Oli getting his creon is pretty much one of my highest priorities in life. It is NOT easy in the beginning, I was feeding him for an hour at a time. I would give 1/3 of a scoop of creon at the start of the feed then he would finish up around the 60 min mark and 20 mins later be starving! Little did I know that creon lasts for 30 mins so I should have been giving two serves. Another steep learning curve was how to manage creon for the 1000 over night feeds I was doing. We came up with a genius idea to draw up some apple puree in a syringe WITH the creon and leave it in the fridge. Squirt it in his mouth before a feed and hey presto! We are done! No...wrong, unfortunately creon is activated when its in the apple and therefore not able to do its job when given premixed (or so I'm told by our team). I can and will write an entire post on creon because its a crazy, scary, nerve wracking thing to get use to and I can relate to so many new mums who find it difficult because I was one of them and I spent many hours crying over bloody creon!!!
When he was around 4 or so months I gave Ol a tub of apple puree. I didn't think he would eat it all, infact I was very suprised when he gobbled it down and screamed for more! From that point on Oli changed, his physical appearance and his personality! It was as if he was like 'FINALLY they are feeding me!" It was an odd feeling, to know that my milk wasnt enough for him but I find some reassurance that it's because of the disease. It was a tough pill to swallow at first but no time to feel sorry for myself when I'm in the kitchen 24/7 prepping meals, feeding, calculating, creoning and cleaning!!
We began with the usual fruits and veggie purees. I don't think babyled weaning would have suited us because of Ol's insatiable appetite and NEED for calories. The things I feed Oli vary nowadays but each meal has the following added. Butter, oils, salt, cream. People with CF need a high fat, high salt, and high calorie diet. This is because their lungs need to work so much harder than ours and the nutrients and energy in foods are not always absorbed. Taking creon helps absorption but does not completely correct it. In order to gain weight and grow normally Oli's energy needs are 20-50% greater than a baby without CF.
Its quite strange to feed a baby all of this cream, salt, butter etc. These things we consider as 'bad' foods. I find it fun, I love cooking and preparing his meals, I challenge myself to find the fattiest creations! Now that Oli is 10 months old he usually has whatever we are having and I alter it to suit him. I secretly love being out at a cafe or somewhere and giving Oli a piece of cake. I'm just waiting for the day someone says to me 'you shouldn't be giving your baby cake' Haha! Bring it on!!! Below is a food cube from a booklet I was given by my clinic. While I could get caught up in giving Oli all 'junk' food just because he needs the extra calories - I dont. His diet is basically exactly the same as any other 10 month old babies but with added extras. I keep in mind that there are links between CF and diabetes in the later years so I dont give him insane amounts of sugar etc.
Starting solids and trying new foods now has been a balancing act. I think anyone who has undergone bowel surgery is left with side effects. Major surgery paired with a disease like CF meant many tummy aches in the beginning. Working out the correct dosage of creon with the percentage of fats in foods is an art form. 4 grams of fat are equal to 1 scoop of creon therefore you need to get the equation correct. If he gets too much creon he gets constipated and has terrible tummy aches. If he has too little creon he has disgusting slimey, oily poos that STINK and also a tummy ache. On a visit to the gastroenterologist he mentioned that in the US they don't weigh/measure foods they just estimate the amount of fat in a meal and give the creon. I've taken this on board now and I regularly guess and I'm getting pretty good now. I haven't had an oily poo in a long while!! I find it easy to buy the same brands of things, for example yoghurt. I know how much fat is in the brand I buy and how much creon I need for 100 grams.
Below is a typical day of Oli's meals. I'm still breastfeeding him 4-5 times a day too. This gives you an idea of the amount and types of food a bub with cf has throughout the day. I'm still on learning so much about cf but this is something I definitely enjoy and am feeling more confident with. Oli is stacking on the weight so I must be doing something right!