Dairy And Soya Free

You have to like someone an awful lot to give up milkshake for them.

Long term readers of my blog will know I breastfed my first baby for just under a week before switching to formula for a variety of reasons not limited to her generally being terrible at feeding and me being incredibly unwell. She thrived on formula, started putting on weight, importantly didn’t become jaundiced again and has been on the 75th centile since she was a few months old. She’s a happy and healthy toddler who (touch wood) we’ve only ever taken to the doctor’s once and that was just to confirm a little rash was indeed viral as we suspected.

This time round I decided I’d quite like to give breastfeeding a go again. By the time he was a few hours old, Max was on NICU so I was advised to begin hand expressing for a couple of days then move on to using a pump. I welcomed the chance as it meant I could do something useful while the doctors, nurses and machines were doing their own extremely important jobs.

Fast forward to him being two weeks old and they were happy he was tolerating being tube fed following his surgery, so we could begin feeding him orally. That evening I opted to try him with a bottle of my expressed milk and he took to it so well we carried on doing it that way rather than him breastfeeding directly.

Skip to six weeks and Max was back in hospital after becoming incredibly unwell after we were advised to begin introducing formula as he wasn’t putting on weight quick enough. Three days into that stay and we were given a diagnosis of a severe dairy allergy and told it was likely he’d also react to soya. So I had a choice – either I could stop expressing and we could rely solely on prescription formula or I could cut out these things from my diet.

I chose the latter, not realising at the time how many things have dairy or soya in them! Dairy on its own isn’t too bad (apart from crisps – why do so many crisps have milk in them?) but so many of the alternatives have soya in that trips to the supermarket are no longer about choice but about having to have the one thing available.

I wasn’t allowed to give Max the expressed milk I had in the freezer and because I’ve had blood transfusions in the past I can’t donate my milk to an official milk bank but luckily I found a lady through Facebook who was collecting expressed milk for her baby (who was born last week! Congratulations!) so I didn’t have to face the shit situation of throwing four litres of the stuff down the sink.

Of course, some people would say I don’t have the right to moan because I’ve chosen to go dairy and soya free. But I’d invite those people to come and see how well Max takes a bottle of my breastmilk compared to a bottle of formula. With his reflux (a side effect of his hernia), he struggles with too much formula – even the prescription stuff which is free from the things he’s allergic to – and he’s like a different baby now I’ve managed to increase my supply and only offer one or two bottles of formula a day compared to the four he was having previously. We deliberately don’t offer him formula overnight and he’s so much more settled because of that.

So that’s my dairy and soya free story. I don’t know how long I’ll express for – I’d like to get to six months but we know weaning will be a tough journey with this one so it may be I keep going with the boob milk as we know he can tolerate it, especially if he doesn’t outgrow his dairy and soya allergy (his paediatrician doesn’t think it’s likely). In which case next March will be my next taste of chocolate, pizza or milkshake!

Some tips for anyone who’s having to cut out dairy or soya, in terms of what I’ve found out there:
– Koko products are really good. Their yoghurts actually taste like real yoghurts! And their coconut milk is much tastier on cereals than almond milk, in my opinion.
– Doves Farm do an excellent range of Freee bars which don’t contain allergens. I was looking for an oat based product to help my supply so was thrilled to find these in apricot, apple and even chocolate flavours.
– Co-Op’s donuts! Neither their custard nor their jam donuts contain soya or dairy. Winner.
– Pringles. Lots of crisps contain milk but their plain and Texan barbecue varieties don’t (possibly some others but I haven’t checked up on all their offerings).

Do let me know if you’ve found any other great soya or dairy alternatives!

Harriet, Alexandra and Max x

Express Yourself

From a few weeks ago, but the expression on Max’s face is great!

So the time has come to talk about feeding! We all know the great breastfeeding/formula feeding is one of the big debates designed to make moms feel judged whatever side of the fence they fall on! You may also know if you’ve read previous posts of mine that I breastfed my daughter for just under a week before switching to formula, partly because she just wasn’t getting the hang of it and there was a worry she’d become jaundiced again and wasn’t putting enough weight on, and partly because I was very poorly.

This time round I’d decided I wanted to try and feed my son if I could. Then within hours of his birth he’d been transferred to NICU and was being attached to various wires and tubes so I was advised to start hand expressing and then on day 2 to start using the electric pump to build up my supply.

As it was, Max was partly tube fed for the first two weeks of his life while being nil by mouth on the other days. When it came to establishing feeding on day 15, I was told to essentially pop him on the boob and ‘see what happens’ although I was warned he was small so may not take to it. I tried on that day a few times but felt massively unsupported. I was sat in a room with a curtain around our section of it, trying to get this tiny poorly baby to attach himself to me. He was so tired he kept nodding off with the effort of it.

And I cried. I cried at every feed because it was bringing back all of the memories of trying unsuccessfully to feed Alexandra. I cried because I knew the only way we would get out of the hospital is if Max started gaining weight and he had to be having a substantial amount of milk to do so. I cried because I really didn’t know what I was doing – and neither did he bless him.

So when they gave me the option of feeding him from a bottle (still
my expressed milk), I took it. And he drank the entire thing straight away despite them saying he may struggle to do so because of his size. And from then on, I carried on expressing and giving him the milk from a bottle. I didn’t even try putting him on the boob.

When we were discharged a few days later, I knew his fast progress was because he’d taken to bottles so quickly and I wondered how much longer it would have taken for us to establish breastfeeding. Occasionally I thought I should have stuck at it longer but I figured he was still getting exactly the same milk, just from a different receptacle!

When we got home they said I could try breastfeeding there if I wanted to. Perhaps I would have done if he was my first but I couldn’t see a way to sit all day trying to establish breastfeeding when there was also a toddler to look after and SO many hospital appointments to attend. Probably once feeding was established, it would take less time than expressing but I couldn’t see a way we could get to that point?

Max is now on a mixture of my milk and a special Neocate formula since he was diagnosed with dairy allergy FPIES. I’ve donated the four litres of milk I’d got frozen from before I went dairy free. Max has 120ml every three hours which is a lot more than most babies his size, but he’s trying to catch up because he’s still the size of a newborn not a two month baby! So if I was able to express eight times a day I would probably be able to build my supply a little and solely give him EBM but it’s normally more like six times a day that I express and sometimes it has to be a quick five minutes rather than a full go, so that’s why we’re topping up with formula.

I don’t know how long I’ll carry on expressing. I felt like it was important for him to have my breast milk, more so because of him being prem and poorly. It would be SO much easier to transfer to just formula (have you ever tried looking after a baby and toddler on your own while expressing?!) but I don’t want to do that just yet.

I’ve only had one bit of outright negativity (I may talk about that separately) and the advantage is that other people are able to feed. So for example sometimes Dylan will be feeding Max overnight and I can go off and express – or even try and get some sleep.

Downsides are I do feel incredibly like a cow ‘milking’ myself all day and night!

Harriet, Alexandra and Max x

Home With A Diagnosis

After a five-night stay in hospital, which I talked about here, Max (and I) came home yesterday. It was an absolute relief to be back with Dylan and Alexandra and we got back just in time for a trip to the park before bed.

On top of his CDH (congenital diaphragmatic hernia), Max now has a diagnosis of F-PIES – food protein induced enterocolitis syndrome. This essentially is a condition whereby babies/children have a severe reaction to certain foods. Rather than have a rash or any external symptoms, they are affected internally.

Max’s symptoms that we noticed were: becoming pale and lifeless and white loose poos. He also had a low temperature of around 35 – something which he had when he was in hospital after birth too, acidosis, dehydration and was essentially presenting the symptoms of sepsis which is why they started treating him for an infection at first. Apparently all this, including the sepsis-like symptoms, is common for F-PIES as well as vomiting which he doesn’t seem to be hugely affected by yet.

People with the condition can be affected by all sorts of foods and some can only eat a handful of ‘safe’ foods. Hopefully Max is only affected by cow’s milk protein, although one in three also can’t handle soy. Many children grow out of F-PIES but there’s no way of knowing when or if this will happen.

Obviously Max starting to wean is a long way off, but generally the plan would be to try him on soy at some point and then if he tolerates that begin to introduce dairy into his diet. Best case scenario is he tolerates it and can grow up eating a normal diet. Worst is that he’ll have to avoid certain foods forever (but as the doctor pointed out, it’s quite lucky to have a condition where the cure is to simply not eat something). There is no medication which can help from what I’ve read, doctors simply have to treat any symptoms children present with when they’ve had a reaction.

While I’m still expressing milk for Max, I have to avoid dairy (the dietician said I could potentially eat soy if I wanted to, but I’m cutting that out too just in case as one in three seems a high number!) as even the small amount passed through breast milk can be harmful to him – although it was the higher amount found in formula which triggered his reaction on Friday. He’s also got special formula so if he needs top ups or I decide to stop expressing then he can safely have that as it’s made without cow’s milk proteins.

I’m sure we will document his F-PIES journey along the way as we know this is just the start of a long road – and weaning won’t be as simple as it was with his big sister Alexandra. But at least we have a diagnosis now and we can keep him well now we know why he became so poorly.

Harriet, Alexandra and Max x