Why I’m harvesting colostrum at 35 weeks

I haven’t told all that many people that I am antenatally expressing my colostrum (first milk) into tiny little syringes but I am and I am actually pretty proud of myself at the moment (even though my running total is 1.5ml at the time of writing).

I haven’t told all that many people that I am antenatally expressing my colostrum (first milk) into tiny little syringes but I am and I am actually pretty proud of myself at the moment (even though my running total is 1.5ml at the time of writing).

So why am I doing it?

Tongue tie

Primarily, I decided to do this because I have a tongue tie, my son has a tongue tie and so do several members of my immediate family who have subsequently had issues breastfeeding. There is very real risk that this baby will have a tongue tie as well and having a supply of milk that she doesn’t need to work so hard for could buy us some time to get it sorted.

When I was pregnant with my son four years ago I had no idea that I could save this stuff and that it could be even remotely useful. As it happens, the reason babies can survive on so little before your normal milk comes in after a couple of days is because colostrum is high in sugar, fat and calories. It really is amazing stuff and I want my baby to have it even of it can’t come direct from the source right away.

Allergies

At 2 days old, between phototherapy lights for jaundice and having my boobs manhandled by several midwives a day because I wasn’t “feeding right” I was coerced into feeding my son a bottle of cows milk formula because “his blood sugar must be low and he’s too exhausted to feed” even though frequently falling asleep at the breast before finishing a feed is a tongue tie symptom that should have been spotted by these experienced professionals. He promptly threw up pretty much the entire feed and we were back to square one. Now, I have no real evidence to back up this theory but part of me believes that if I hadn’t been guilt tripped into giving that bottle of formula my son might not have developed an allergy to milk. Tiny little babies aren’t designed to break down such complex proteins. If there is even the smallest chance that I can avoid this baby going through what my son still suffers I will take it.

Being in tune with my body

Last time I didn’t know what my body was capable of so I didn’t trust it and I didnt work with it, I possibly even worked against it. I remember being told to just express a bit of milk by hand onto a spoon or something and I just didn’t really know how to handle my breasts effectively (sounds daft, right?) so I didn’t get anything out.

I did go on to pump breastmilk a little and learn how/when it was best to do that and what my breasts responded to and what they didn’t but it was slow progress with a lot of sore nipples and heartache. It was also nearly four years ago.

Being prepared like this, knowing what my body can do and understanding some of my limits is making me feel stronger as I head towards full term and much more confident that my body can take care of my baby.

Recovering from trauma

I haven’t talked too much about the trauma of my son’s birth and the weeks that followed it. They somehow manage to be both the best and worst weeks of my life and unfortunately a lot of the happiness is still shrouded by simmering anger. I have been working hard to turn that angry energy into positive progress throughout my pregnancy and expressing my colostrum is surprisingly therapeutic. All the knowledge and experience I gained from being let down over and over with my first child is being channelled directly into making more informed choices this time. Any bitterness I felt towards my boobs for letting me down (yes, that’s a thing and yes, I know it’s silly) is melting away now I can see how well they are already working for my unborn child.

If I am separated from my baby at birth

No one wants to think about some of the things that could go wrong during labour and childbirth or unexpected complications with mother or baby that result in separation at birth but sometimes it does happen. If I am unable to attend to my baby’s needs for whatever reason then I know she will have a little stock of my milk to get her through for a little while, packed full of my antibodies to protect her in this big scary world.

Gestational diabetes

Now, I don’t have gestational diabetes but it definitely deserves a mention here! If a mother has GD then there is a risk that her baby’s blood sugar could drop rapidly once they are born. Having expressed colostrum on hand means baby will be able to get the sugar they need quickly without the need for formula milk.

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Allergy Alienation

…my little boy is different from other kids and that my experience of parenting has been skewed by that. I like to think it has made me more considerate but in reality it has just made me anxious and controlling.

You may have noticed a surge of reports in the news about very avoidable deaths and serious injuries due to allergic reactions because somewhere along the line, someone was careless. It makes my blood boil and my stomach turn.

That level of carelessness and thoughtlessness affects people with allergies all the time and as a result, some people just don’t feel comfortable going to certain places.

My recent experience at a local soft play centre – one that previously made me feel very at ease compared to others – made me feel alienated more than I ever have before. Ultimately, it just hammered home that my little boy is different from other kids and that my experience of parenting has been skewed by that. I like to think it has made me more considerate but in reality it has just made me anxious and controlling.

So, what happened?

There is a small soft play area within the restaurant at a local garden centre, you pay for your soft play session with your drinks/food at the till and go around the corner to the enclosed soft play room. You sign in with a member of staff at the door and you get your wristband and in you go. This particular day was busy enough that I would have avoided it if I had known before I paid. I can’t stand busy play areas of any kind, it’s too chaotic for me. I entered the room with my son and a tray with my coffee on it and before I had even sat down I managed to cause a scene.

I didn’t set out to, but it happened and it was mortifying. I saw a grandparent give their granddaughter a bag of cheese and onion crisps and send her on her way. I tried to get their attention quietly but it was loud in there and it was urgent – the child would disappear into the climbing frame in seconds. So I shouted. The other parents in the room fell silent and stared at this woman who had only been in the room for three seconds shout at a perfect stranger.

She didn’t stop the child right away, why would she? She asked me why. I muttered something incoherent about my son being allergic and she looked at me like I was crazy, did she really not understand? She reluctantly took the bag from her granddaughter who had, by some miracle, stayed near the front of the play area and rather than wash her hands off and send her to play again she just let her go in with one crisp at a time. This set me on edge but I still had some determination left for my son to have a nice afternoon playing with other children.
 
After that, everyone went back to their conversations slightly subdued. I caught people stealing glances at me and muttering to their companions. I couldn’t relax – what if there was already something in there with milk in it from before I arrived? After about 10 minutes another family arrived and sat their young daughter in a highchair with a tippy cup of milk, the kind with a free flowing spout. Something else for me to watch. Sure enough it went on the floor almost immediately and splashed milk everywhere. The parent went to pick it up, got to eye level with their baby and made the effort to tell them and sign to them that they mustn’t throw the cup…but left the milk all over the floor. I didn’t want to cause another scene so I left it for as long as I could stand to, almost in tears. I lasted about a minute before I got some of that blue tissue they have in shops and silently cleaned under the table myself. More looks, more muttering, more discomfort for me.
 
As I sat back at my table and held back tears again I saw one child enter the play area with cake and another enter with crisps. What on earth am I supposed to do? People have clearly been doing this all day and they aren’t going to stop. I only had one choice, I had to pack up and leave. We had been there for less than half an hour and my son doesn’t like leaving after 2 hours, of course he cried his eyes out whilst I explained to him why we had to leave. Maybe he doesn’t fully understand it yet but at least he knows it isn’t his fault, he isn’t in trouble. I could feel the people staring at us as we left and by the time we got as far as customer services my devastation had turned to anger. I explained everything that had happened and received a full refund. I would have rather stayed and let my son enjoy being a kid, for the sake of a couple of quid.
 
My son was subsequently ill from the contact with his allergen for about a week after this and I spent the whole time beating myself up because he was suffering for a lesson I should have learnt already.
 

What can you do?

It’s not much, but it means the world to allergy families.
  • If you’re in a play area don’t let your children walk around with food, and if you are able to then wash their hands/faces before letting them play again.
  • If your child has eaten in a shopping trolley or in a cafe highchair, wipe it down before you put it back.
  • If you or your child drops food or drink on the floor where other children might play then clean it up.
  • If you work in a food serving establishment be patient with allergy families and don’t ever answer questions you aren’t sure about – we’d rather go hungry than eat something that could make one of us incredibly ill. We will always be grateful for the honesty.
  • If you work in a nursery, try and get all of the children to wash their hands AFTER food as well as before.
  • If you’re hosting a children’s party try to cater for the allergy kids if you can and be considerate of cross contamination if you can’t – something as simple as slicing cheese rather than grating it so it doesn’t fall out of sandwiches makes a huge difference.
  • If you see someone like me out in the wild, don’t gawk and mutter. Try and offer some friendly words and maybe even a bit of back up if things go even further south.
Allergy Alienation - The truth about days out with food allergies

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Frank Fridays : the realities of being a disabled parent

I’m honest with my friends about my health struggles, and I also write for The Mighty about some of my experiences. Now I feel it’s time to open up to you, the Mummykind family.

The truth is that my health is often poor, but I don’t make a habit of advertising it. Honestly, I find it so difficult to be honest about my struggles as a disabled mum, because so often people hit me with ‘if you’re disabled, don’t you think it was selfish to have a baby?’. It stings because they don’t understand that I’m a good mum, only that I have difficulties and that must mean I’m a bad parent, right?

Newsflash. EVERYONE has difficulties. It’s how you deal with it that matters.

I’ll try and keep the medical jargon to a minimum while explaining some of what I have to deal with day to day – having dealt with some of my conditions since birth I’ve been told that I sound like I ate a medical textbook!

I currently have seven conditions diagnosed, with more in the pipeline (lucky me, eh!)

Ehlers-Danlos Syndrome – This is one of my most prevalent illnesses. I was born with EDS, and while every day is different, most days are an uphill struggle. EDS is a rare condition that affects connective tissues. Connective tissues are present in skin, organs, blood vessels, muscles, tendons, ligaments and bones (so basically everything). Symptoms I deal with every day are loose, unstable joints that dislocate every day, chronic pain, easy bruising, muscle weakness, fatigue, and problems with internal organs.

Orthostatic Hypotension – When my new Orthopaedic Surgeon heard I had this, he said ‘really? But you aren’t old!’. Well, newsflash Mr, young people can have Orthostatic Hypotension too. Put basically, when I change position from lying to sitting, or sitting to standing, my blood pressure plummets to dangerous levels, and I lose consciousness and faint.

Mast Cell Activation Syndrome – the cells in my body that react when you have an allergic reaction are over active, and my body spontaneously develops new allergies all the time, even to something that was safe yesterday.
Gastroparesis – my stomach can’t empty itself as effectively as other people’s can, which means food stays in there for far too long. Glamorous.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis – I’m super tired all the time! Yay!
I also have Celiac disease and Asthma, but those seem pretty pale in comparison!
Now that’s out of the way (and well done if you’ve got this far, medical stuff can be snooze inducing!) hopefully some of what I’m about to say will make more sense!
I think it’s important to start with the fact that the realities I experience living life as a disabled parent will be very different to someone else’s. Life is so variable, and what’s difficult for me might seem like a walk in the park to someone else, and vice versa.
The biggest reality I’m trying to deal with right now is that parenting my daughter is nothing like I thought it would be. Though I try to do the best I can, there are days like today where I really can’t function enough to look after myself, let alone my little one.  I’m blessed to have my husband at home with me all the time (fainting unpredictably means I can’t often be left alone) and my wonderful John is often left to care for my little climber while I have to rest. I often feel a real sense of guilt because I’m not living up to the perfect image in my mind of what a mother should be. I’m faced with the reality that I can’t do all I want to for her all the time. And that’s ok. It doesn’t make me a bad parent for having to take a step back and recover my strength. It’s a good example of self-care to set my daughter, if anything.
It also strikes me that my monkey won’t grow up in the same way other children will. While it’s great that both her mum and dad are home with her all the time, it worries me that I’ll miss out on important things later down the line because of my health. Because my illnesses are so unpredictable, i’m often fine in the morning and struggling in the evening, or the other way around, and that can be difficult to understand for one so little.  I might not be able to take her to the park when she wants to go, and I might have to watch her play from a distance rather than getting involved.
Not being afraid to ask for help is a big lesson I’ve learnt over the last few months. It is practically impossible to look after a crawling explorer while you’ve got a hip that is constantly dislocating, you’ve got a migraine which is making you vomit and see stars, you’ve taken enough prescription medication to tranquillise a horse, and you’re dealing with an allergic reaction from something (and it really could be anything at this point). When I first asked for help, I have to admit that I felt a little ashamed, as though I was being naughty for asking for help. But that’s when I realised we have the saying ‘it takes a village’ for a reason. And in our family’s case, it really does.
But it’s not all doom and gloom. While I may have painted a bit of a dreary picture, I get to see my daughter grow up in a way most people don’t. With any luck, I won’t miss any firsts, and while physically I might not be able to do as much as I want to, I’m still able to raise my daughter to be a kind and considerate human being who is already being exposed to diversity at a young age.
While I may struggle more than most, my struggles don’t define me, and more importantly, they will never beat me.
If you’re intrigued by Ehlers-Danlos syndrome, check this awareness video I was involved in!
What realities are you struggling to come to terms with?

7 Top Tips for Shopping with Food Allergies

My son was 5 months old when we finally established that the reason for his slow weight gain, reflux, explosive nappies, wheezing and general discomfort was CMPA – Cows’ Milk Protein Allergy.

As we were just about to  embark on weaning we had to learn to shop for allergies pretty quickly, and by this point my maternity pay had stopped so we had to do it on a budget. One stroll down the “free from” aisle in any supermarket will tell you that allergy shopping can get pretty expensive pretty quickly, so here are my top tips for allergy shopping:

1. Plan meals around things that don’t usually contain your allergen(s)

It might seem obvious but sometimes its hard to see past ‘replacement’ items and look at what is already available to you. For us there are a lot of things that are fine to eat without changing anything. Pasta, noodles, rice, bread and potatoes are usually all dairy free as are fresh fruit and veg and meats. for people with a gluten allergy there is still rice, potatoes and rice noodles before you have to start looking at ‘free from’ alternatives.

2.  Search for vegan recipes rather than “dairy free” or “egg free”

Veganism is growing in popularity fast, there are a huge amount of vegan recipes out there that you can make as they are or add whatever you like. Dairy free and egg free are a little more niche when it comes to cooking blogs and videos. Having a good selection of meal ideas is going to make your planning and shopping easier and cheaper.

3. Swerve the free from aisle and look at value products.

My favourite example is garlic bread. In Tesco they sell a free from garlic baguette for £2.50 and an Everyday Value garlic baguette for 35p. Both are dairy free. Asda’s own brand mince pies are 89p and vegan so dairy and egg free and Lidl ‘Simply’ white loaf is the unicorn of breads – it is dairy free like most bread but also contains no soya flour. **Correct at the date of my last shop in each supermarket**

4. ALWAYS ALWAYS ALWAYS read the label.

Sometimes they sneak milk products into the funniest of places, like the sliced sandwich chicken in ASDA or Bernard Matthews Turkey slices with added milk proteins. Even if you’ve had something before, check again because recipes change.

Don’t just check the ingredients though, the allergy advice below can be important. A lot of products in Sainsbury’s and ASDA have the phrase “not suitable for milk allergy sufferers due to manufacturing methods”. This basically means that there is a very high chance of cross contamination with milk products.

5. Get your chocolate fix on the cheap

There are free from chocolate options available but normal dark chocolate is often dairy free and a fraction of the cost. Instant hot chocolate powders contain milk but Cadbury Drinking Chocolate has a dairy free recipe (it says may contain traces which can be fine in some families) so pop some of that in a cup of oat milk and have a creamy hot chocolate.  Bourbon biscuits, for the most part, are also dairy free but that can vary massively from brand to brand so check the packet!

6. Shop around

Alternative milks are perhaps one of the unavoidable free from products. We like oat milk best of all and that can come with a pretty hefty price tag. ASDA is usually the cheapest for fortified Oatly and Morrisons for Oatly Barista when we can get to one. Sometimes they come up on offer on Amazon or  other online retailers so its worth checking around from time to time and stocking up when you find your milk at a good price. Recently, Alpro Hazelnut milk was on 3 for £3 so I stocked up on that for myself and let my son keep drinking our more pricey oat milk stash.

7. Find other allergy families

The best source of information, recipes and bargain tip offs is other people with allergies. I’m in several Facebook support groups and when there’s an offer on they always let us know. They will share their experiences with certain products and let us know if they are worth buying or whether to give them a miss.  I also have some local friends whose children have allergies and it can be much easier to have lunch dates with them because their food will either be safe to share or they will understand the importance of the children not sharing.

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