Breastmilk Fortifier - A NICU Mum's Perspective

Like many expectant mothers, I had intended to breastfeed my baby. I thought I'd deliver naturally, baby be put on my chest for skin to skin, it would find my nipple, and we'd work at establishing breastfeeding.

Having a premature baby introduces you into a whole new world of infant feeding. Joseph was fed through his umbilicus to start with, then after a few days a long line was inserted to feed him directly into his stomach. Joseph was fed a special non formula feed, known as Total Parental Nutrition.

All the while, I pumped my breast milk and stored it, I knew at some point he would be weaned off TPN and onto milk. Milk was used for mouth cares, and for comfort.

At 24 days the long line was removed and Joseph moved on to expressed breast milk via nasogastric tube. After a couple of weeks I was approached by a nurse, stating that due to Joseph's poor growth, his milk would be fortified. I burst into tears. It hadn't been explained adequately, I felt they were adding "poison" to my milk. I felt it was a criticism of me personally. Our unit didn't have many very low birthweight babies, so didn't have fact sheets, or the training to explain to me the rationale, and indeed what this stuff actually is.

The nurse kept saying "its just extra calories", but I wanted to know where those extra calories came from, and no one could tell me.

So just what is breast milk fortifier and why is it used? Breast milk fortifiers are also known as HMF or human milk fortifier. But you must be aware, they are not, for the main part, made from human milk. They are usually made from cow's milk. They contain additional proteins, electrolytes and calories, and are added to human milk to increase its strength. A company in the US does make a human derived version but it is astronomically expensive.

Growth isn't just weight + length. Often we forget that when we talk about preemie growth we're talking about internal organs, the brain, they body systems. If there are not sufficient calories then this internal growth can suffer, and the baby can have very severe problems.

It has been proven again and again that breastmilk is best for premature babies, however it has also been proven that in some circumstances, it is not sufficient on its own and a little help is required, through the use of fortification. In our PCT and I think throughout the UK, it is common practice to stop fortification before discharge, although in some circumstances I am sure it continues.

I do think that it should be a choice, and it should be explained, particularly if you have a family history of lactose or dairy intolerance, all avenues should be explored. I do also think that it is not necessary in all cases, however on our NICU I know it was carefully assessed and during our stay Joseph was the only baby who had fortified milk.


Bliss information on fortifiers

My Best Posts

This week the Britmums blog prompt is What Are Your Best Posts This Year?

I have to say, blog wise, I've had a stonking year. Although in blog world I may not get the views and publicity that others get, in my own little way I've made a big impact in ways that matter this year. I have beautifully loyal readers who comment, and support me in many ways.

Here are my top 5 posts.

Being Mum to a Premature Baby - This post was written hastily one afternoon, after reading a few things on Facebook. I paused for a minute about how things are different for us that have had early babies and been with them on NICU. This post has received more shares, and feedback than any of my others, and I'm really proud of it.

Raising an Only Child - I've really struggled this year with the decision not to have any more children. This decision was made very early on, when Joseph was still in hospital, with my husband having a vasectomy when Joseph was six months old. Absolutely the right decision for us, but one that I had never had time to come to terms with. This post is regularly found by people searching on Google, and I am so pleased that I've written about this, and hopefully, helped others.

Reasons not to Have Another Baby - It never ceases to amaze me that my miserable posts get the most interaction! This post was another one during my struggles, and was very well received, and I know it helped others too. I am really pleased that I have taken the step to blog about the harder side of my life this year, and I know its helped me. Sometimes I come across as so happy and positive, which I am, but sometimes to my own detriment. Sometimes I need to reach out and ask for help.

From RAGS to Riches - Following some of the other posts where I was struggling, I decided to go and see the GP to ask for counselling, she was awful, and I came home feeling so angry, and resentful. I have since discovered that she wrote on her notes "has asked for counselling, lists too full, will review in three weeks". And she never ever did. So the referral wasn't made. Fortunately I have all of you to look after me and be my therapist!


Having a Premature Baby - It's Not All Bad - This was  a lighthearted post with a lot of contributors, it's one that is still read often, and shared, unfortunately all the feedback and shares were on my personal facebook page not on here!

I hope you've enjoyed this recap, I look forward to doing a further round up of a year at Not Even A Bag of Sugar later in the month.

Enough. Enough is Enough

One of my Facebook friends shared this incredibly powerful video.

Watch it first, please.

Watching this I had tears streaming down my face. I am Jonah. Ok I am not gay, or a teenage boy, but it started when I was 6, my teachers called it teasing.

My nickname? "Spaz" Because I was sent to a special school because I couldn't catch a ball or run like the other kids. It was only for a day a week, but it was enough. I was singled out. I only went for a year. But the damage was done. I was marked.

It was more than name calling. It was physical, I was hit, I was punched. I was ostracised. My school bag was bombed with paint, my lunch was stolen more times than I care to remember. I was left out of games, out of school activities. 

I became bookish. Surely a "spaz" is stupid, so I set about learning, and trying to be the best I could be. That made it worse.

Kids introduced me to new kids as spaz. And you know what, in grade eight it got a whole lot worse.

Boys start being driven by hormones, the bullying took a sexual edge, I was completely ill equipped to deal with it. I retreated further into myself. I was scared.

By the time I got to the end of grade ten, I'd had enough. I was up to the back teeth of being scared, or being intimidated. I found my voice. I found my humour. I stood up to them. I won.

I have concluded that the main reasons I was bullied was because I was small, not just in stature but in personality. I didn't "need" them, I had my close friends, and I had my books, and my inner resources I didn't need those people in my life.

And looking back now, I am grateful for that experience, as it built my character and shaped me.

However, I am one of the lucky ones. I survived. I thrived. Bullying is a horrendous experience. Looking at Jonah I don't think its entirely about his sexual orientation. He is bright, he is resourceful, therefore he is a target.

Bullying now scares me more than ever. At least when I was a teenager I could go home, shut the door and I was in my sanctuary. Now its not like that, bullying can break through into our sanctuary via phones and the internet.

And it has to stop.

Enough is enough.

I Want A Hippopotamus for Christmas

I missed the blog prompt last week on Britmums, so thought I would do it today for your viewing pleasure. The prompt is "All I Want For Christmas..."

I posted earlier this week about being a bit bah humbug this year. To be honest financially we are still very tight, my work has gone quiet for Christmas, so we are being frugal, which is fine by me. Joseph has plenty to open this year, and that's my main concern. We are not giving gifts to each other this year.

My favourite Christmas song is the title of my post. I love this whimsical song, and it always makes me smile.

So if you happen to see one in your travels, send a hippo my way!

However in all seriousness here are my Christmas wishes.

1. Restraint to eat sensibly and keep up with the exercise. We will be in Germany for Christmas this year, where restrained eating is not easy at the best of times, and with my in laws, who are always generous with the food, and the drink!

2. A great pair of running shoes and some decent tracksuit bottoms.

3. A Richmond Tigers t-shirt, and Dear Santa, if you can help Richmond in the pre-season that would be ace!

4. A return ticket for 3 to Australia.

5. A kiss and a cuddle from my 2 favourite men!

6. And a serious one, for all the mums, dads, grandparents and siblings with babies in special care this Christmas to have a blessed, and calm day with their beautiful babies. 

What do you want down your chimney this year?

My Ten Parenting Rules*

1. Do not overthink children's television. Your toddler does not care than Makka Pakka only comes up to Upsy Daisy's knee, that the Ninky Nonk and Pinky Ponk appear to have no driver or pilot, that the Tomliboos door is far too small for the house, so why should you? No good can come of rationalising In The Night Garden.

2. There is a time for chocolate buttons. Whilst I am not advocating bribing toddlers with chocolate on a regular basis, to get one to sit still long enough for a haircut, or to encourage the taking of medicine, sometimes a mama gotta do what a mama gotta do.

3. There is a time for children's television. It's carefully designed, it's on all day, and on a wet, miserable day, there's only so much play dough and drawing a child can do.

4. Indoor play areas are a necessary evil in Britian. Don't go looking for dirt, or worry about the food choices, lighen up!

5. Think really hard before you criticise another parent, who is just doing the best they can.

6. Toddlerhood is incredibly traumatic, that's why people are so judgemental in supermarkets - they have completely forgotten that they once own a toddler terrorist too, Post Toddler Amnesia. They fantasise that "back in their day" their daughters wore crinoline frocks, their sons wore sailor suits, and they were perfectly behaved treasures. They are wrong. Don't take it on board.

7. Nothing is as difficult as you may imagine, I've done long plane trips and train trips, and the thought is always worse than the reality.

8. You can fight the food fads or you can just accept that the only fish you will be getting inside your toddler is in the shape of a finger. And that's ok.

9. A child cannot be ruined by too many cuddles, kisses or stories, its a lack of these things that ruin a child.

10. It's ok to ask for help, to have time out, to admit that sometimes you are not coping. Support is there, sometimes from the unlikeliest of sources.

Health Visitors and My Premature Baby - Might Be a Rant

When Joseph was just a week old a little slip appeared through our letter box, announcing that our Health Visitor would be coming to see myself and Joseph at home the following week. I frowned in confusion. He wouldn't be home. Oh well, I thought, perhaps they mean just me. I thought about it some more and a couple of days before the visit rang to let them know that Joseph was born 13 weeks early and certainly would not be home at 2 weeks old. There was no answer, just a machine so I left a message.

I got a phone call about 30 minutes before the alotted visit, the Health Visitor wanted to know whether she should still visit. "Um yes! I have missed my hospital visit with Joseph to see you". The first thing she said when she arrived was "I know nothing about very early babies", so I asked for someone else, she said no one had much experience at all and I may as well stick with her.

Well, at least I wasn't disappointed. Once Joseph was finally discharged we had another visit, and then that was it. My only input was when I took Joseph to weigh ins. Like most mothers, I had times where I left weigh ins in tears. "What are you doing wrong? Why has Joseph only gained this much and not that much?" etc etc. I learnt to be thick skinned, and to make sure I went at a time when I could have a good moan with other mums afterwards.

Then, at 6 months actual we were asked to take Joseph for his 6 month development check. I rang and asked for it at 6 months corrected. They argued "oh we don't see much difference with premature babies" they said. "I'm sorry Joseph was 13 weeks early, he's going to fail if you do it now", I managed to win that one, he still failed at 9 months old, for not being able to sit.

With weaning, my Health Visitor had no idea, she wanted me to wait til 6 months corrected even though the expert literature advises weaning on actual not corrected age. It was just so confusing. I am actually still waiting for her to visit, she was going to come and help me with weaning and give me advice and support. I guess that ship has sailed!

And now, 2 and a half years on, it's happened again. I requested a 2 year development check, which is pretty standard, they are so busy they didn't do it until 2 and a half, just a few weeks ago. Again, he has failed, this time for walking, the Health Visitor was disappointed with his walking, his gait is not what she would expect in a 2 and a half year old. She said he needed appliances, exercises and basically implied I had been neglectful by not pusing harder earlier.

I just feel like banging my head in frustration. Joseph is not a normal 2 and a half year old. Well, he is a normal 2 and a half year old, he loves the Octonauts, Thomas the Tank Engine and dinosaurs. He loves to eat gingerbread and chicken nuggets and chips and couldn't give a hoot about vegetables. He throws tantrums, the next minute he hugs and kisses you, so yes he is a normal run of the mill toddler.

But Joseph was born at 27 weeks. He will have some delay, it's no surprise to me, and I don't think it should be to a Health Visitor. To put her mind at rest, I agreed to take Joseph for a follow up at orthotics yesterday.

And guess what, Joseph walks funny as he has only been walking 6 months, no action required.

Sigh.

I just feel disappointed. When Joseph came home I was terrified, I had no idea what I was doing, and was looking forward to the input of the Health Visitors, and have been very disappointed. The team want me to go fortnightly for weigh ins so that they can keep an eye on us, and really, I wonder whether I should just be non compliant and see what happens.

I'd love to hear your stories, especially positive ones!

Christmas is Coming......Bah humbug

I have a giant fit of the scrooges this year! We are travelling to Germany for Christmas so we're not decorating the house, my mother in law is cooking the cakes and puddings so no smells of dried fruit and spices are permeating the house. We're only buying for Joseph, and his presents are bought. Money is tight again this year, I've been clever with Tesco points and nearly new sales to try and maximise our funds.

I've been royally told off for getting song words wrong, by my increasingly stroppy 2 year old. It's not "twinkle twinkle little star" anymore, its "twinkle twinkle Christmas star". Can't believe nursery have changed to Christmas versions of everything already. Not even "5 little monkeys" is safe. Nope, its 5 little snowmen jumping on the sled. Just wrong. The decorations are up and Joseph is excited already. he just can't wait for "Farmer Christmas" to come, on his tractor maybe?

I dunno if its just ageing, but it all seems so.....crass. I'm not a card carrying Evangelical Christian, but where is Jesus in all this? It appears to me that he's disappeared in a see of cynical advertising, tinsel and pressure.

Our first Christmas I felt immense pressure. I was a new mum, I was still poorly with PTSD, I was over anxious about bugs, about Joseph being overhandled, it was all too much. My husband's family hadn't seen Joseph since he was little, all the extended family were there, it was just too much to bear, and all the "dressings" of Christmas were a welcome distraction. Last year we had a lovely, intimate Christmas with good friends, which was just lovely.

I am sure I will get into the spirit of it, and I think the top and bottom of it is, I am a bit homesick. We've been spoiled, every year since Joseph has been born I've been able to get home shortly after Christmas, and it won't happen for a long time now, unless something amazing happens.

Please, help me find soe Christmas spirit!