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Infant feeding

Get advice and support with infant feeding from other users here.

Crisis of confidence BFing a premmie

4 replies

Poppet45 · 28/02/2012 14:53

Sorry this is an epic, so if you read it, you have my thanks. So my DD was born at 27 weeks, after nine weeks in hospital during which time I pumped milk 8-11 times a day while trying to care for my DS, DD came home BF with a formula top up. And two weeks later we were able to go fully BF. She's done amazingly - she's not far off her developmental milestones, is so content and sleeps well and has held onto her 0.4th centile line despite having a tongue tie, top lip tie, and GERD from a cow's milk protein intolerance as well as from the damage from being a premmie with her stomach valve propped open by a feeding tube for over two months.
However in December she was rehospitalised with a mystery rash, which worsened and worsened and she got sicker and sicker. At first a staph aureous infection was suspected but it turned out to be an acute zinc deficiency. Mine had also tumbled down from 12 to 11.6, buy hers were at just 2. She's now on daily zinc as well as daily iron, multivitamins and meds for her Gerd and at 6 months actual, three months adjusted, is an absolute delight - even though life can be tricky when her puking is bad, although me going dairy free has helped massively.
But we're stuck with a consultant from those days who is convinced that her zinc deficiency is all my doing. Yesterday she told me I look more haggard each time she sees me, I reminded her of those African mothers who churn out children and have one constantly at the breast. (I have two children two years and two days apart, but made the mistake of telling her I bfed DS until he was two, the last 6 months of which were while I was pregnant with DD) and that her deficiency is down to my 'appalling diet'. I have told her over and over my diet is good, I'm on daily BFing multivitamins too, as I was during both of my pregnancies (but I regret not while I was pumping milk initially for DD). I'm keeping a food diet and have had bloods drawn to try to prove I eat well but am feeling very picked upon especially as babies only put on their zinc stores in the 3rd trimester (of which DD had 10 days), Willow is dairy intolerant which reduces ability to absorb zinc, and she was on a diuretic to stop congestive heart failure which has the unfortunate side effect of washing away 60 per cent of zinc reserves. Were also awaiting a genetic test because this could be a lifelong problem unrelated to diet. But to her she's decided from way back in December that 'you've only got to look at yourself to see your the problem'.
Yesterday she refused to increase DD's 10mg daily dose of omeprazole for her GERD even though the dosage was given when she wsa 6lbs and she's now just under 11lbs, and she's on two v hard to tolerate meds (the zinc and iron are both v acidic) and said if her gerd doesn't improve she wants her on a dairy free formula (even though there are no premmie dairy free formulas so she'd either have to have cow's milk or more multivitamins and minerals supplements alongside something like nutramagen) and has no doubts she's be a totally different child. I just feel so sad and alone as my DH is of the opinion that if that's what the doc says then we should consider it. I love feeding my DD, and rebuilding the bond we lost with the pregnancy, as well as passing on the antibodies I never got to give her in utero. I don't really know what I want to hear from posters I guess, but I just need to vent. Am I making life even worse for DD by BFing her?

OP posts:
RedKites · 28/02/2012 15:14

Hi Poppet45,
Am sure more informed people will be along soon, but just wanted to say it sounds to me like you and your DD have done amazingly. Have some Thanks

Would it be possible for you to see a different consultant? The formula thing sounds a bit odd to me, but then I'm not a medical professional.

MigGril · 28/02/2012 16:29

I think you've done fantasticly and give your DD the best start you can.

I'd be looking for another opoin myself, you are entitled to a seconed opoin on the NHS. I think your gut is telling you the right thing no matter what her problems your milk is the best thing for her espicaly as she is dairy intolerent. It may also be worth doing your own research if you can.

Poppet45 · 28/02/2012 19:27

thank you so much for your lovely replies, anyone know how you go abouts asking for a second opinion - its so not me i haven't a clue how you'd do it. I hear you on the own research thing too, infact it was me and DH that discovered the zinc depleting link to her old meds. and thanks for the flowers and nice words for me bfing. It took me 30 mins to collect 0.1mls of colostrum at the start but the physical battles been nothing compared to the verbal bashing i've had from certain doctors for trying to bf.

OP posts:
lizzytee · 28/02/2012 22:53

Poppet, you amazing lady for nurturing and feeding your daughter to a mighty 11lbs. Your post really struck a chord as my DD1 is an ex 27 week, fully breastfed prem who suffered from opportunistic skin infections due to zinc deficiency

I'm :( and Angry at the account of the rude and dismissive comments you've reported above as having been made by your daughter's doctor. There's two reasons for this. One, It is difficult enough normalising to life with a prem baby with some ongoing health complications. Two, the experience of prematurity leaves many parents, and mothers in particular, feeling fragile and traumatised so that even if it were advisable for you to consider another way of feeding your daughter, the language you describe is highly inappropriate bordering on the unprofessional.

You absolutely do have the right to see another doctor, both because you have been treated rudely and because from your post it sounds like you have concerns about the advice this doctor is giving. I have a few suggestions - the first one would be to speak to the patient advisory and liaison service (PALS) at the hospital who can suggest the best route to take. You could also contact the head of paediatrics directly- he or she should be made aware that a member of staff is behaving in this way. If you're not sure who this is, then either PALS or a friendly member of the SCBU team can probably tell you.

If you haven't already been on www.blissmessageboard.org.uk do have a look, most parents there will be able to give you some thoughts on this as well as the benefit of their experiences of living with GERD and other prem complications.

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