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Being able to provide breastmilk for her daughter, who was very ill in hospital and so helpless,...
Was that all it was about providing the nutrients and stuff or was there some other deeper psychological sort of connection or bonding or whatever of providing for this child?
It's a difficult question, it's always difficult to kind of split the psychological with the practical, I suppose that I mean, there is a psychological side and yes you feel like you're kind of doing something for your child, you're so helpless in that situation. And you are therefore doing something, you can go off each day, and the encouragement from the nurses was absolutely fabulous actually they used to laugh and go off and say, "And here comes Daisy', as I came back but, yeah you, I think there is a psychological side as well you really feel as if you're doing something. It's also, it's knowing that there's, you never quite know what's going to happen the next day, I suppose the idea that you're continuing to breastfeed means that psychologically I suppose the idea is that you're actually going to get back to normal at some point, but psychologically it's, I think so it probably keeps you going as well.
So was that what kept you going that feeling that at some stage you would get back to normality?
I think it's not necessarily about, it's not necessarily about going back to normality, you don't really think, you kind of focus on the now and the immediacy of the day and, and you get into a routine, and then you just kind of, yeah, you kind of feed her. It's funny it's almost even down to the fact that you know that she needs feeding every four hours, it's best that you kind of get, kind of know that you want to give her some breastmilk, you kind of you go and you do it and you get into the routine again actually as well as moving forward.
So this was something that allowed you to order your days in this surreal environment?
I think actually, it doesn't really allow you to order your day, because your day is what it is and it is a fixed day and you have your ward rounds and the doctors and the nurses, you've got, you actually have to force yourself to do it quite a lot. But, it's bizarre it, it's difficult to explain because it, it does force you into a kind of routine as well, you're kind of having to force yourself to get into a routine and yeah it does, at the end of the day you are trying, you are hoping that you're going to get back to normal. I think there's, that's, as you say, there's the psychological side of it, you don't think about it at the time but you are hoping at the end of all this if we get back to normal, then you'll take them home, my husband kept saying to me, you know, 'The thing that'll keep us going is we will go home, the three of us will go home at the end of this' and we did, so, and everything did go back to normal so, I suppose, if you can keep doing this because it's, it's very.
At first, she was so focused on her very sick baby that she omitted to take care of her milk...
At this stage before you went on how often had she been feeding a day?
It was still about every three or four hours.
So still quite frequently?
Yeah, yeah, yeah, she was quite.
You must have been very full by then.
I hadn't again thought about it until we got her into, on to the ICU about four o'clock and then they gave us a bed, and I remember thinking I was a bit sore but when I woke up the next morning I was very sore.
And nobody said anything to you at this stage about your milk supply?
To be honest we were all so shocked with her and just moving her around and they could have done, I don't really know, actually they probably did but it was the least of my worries at the time, it was just, 'Oh well whatever'll happen will happen, we'll kind of deal with it later'.
So you woke up the next morning very full and very sore?
Yep, and then I sort of knew that I was going to have to express and again haven't done it but fully aware of people having done it in different situations even sort of down to friends wanting to go out to supper and express milk, so I.
So you'd never done it at all?
No, never expressed before ever.
Was there anybody there to help you?
Yeah, fantastic, fantastic nurses, fantastic neonatal advisor and they were really helpful, one of the nurses took me up and a specialist helper, lots of different specialists there came and helped me basically and showed me how to do it and so I just got on with it really and then.
So were you hand expressing or using a pump?
No we had a pump and they showed me exactly.
How to use it.
Electric pump. My sister, actually it's not completely true, my sister, I'd asked my sister if she could get me a, I must have asked her the day before thinking about it because she did, she brought me one in the following morning, I must have asked my sister if she could get me a pump from the chemist, and, hand pump, but I was kind of dashing back to the hospital, didn't really get a chance to think about it. But the advisors, the breastfeeding advisor in the hospital came and helped me and, showed me how to use the pumps, they had a little room, a couple of pumps and I managed to pump kind of three or four bottles and then took them down and gave them to the nurses so it started straight away.
Did they use that milk?
How did they give it to her?
I'm trying to remember, in the first instance I think they were still, they were still feeding her, and they were feeding her through
Her eight month old baby underwent a heart transplant. She built up her milk supply and provided...
She was very well until about seven and a half, eight months, and we hadn't had any problems and then she had a slight cough and a cold, so we took her in to see the doctor and the doctor said “Yeah” but didn't really, she was kind of yelling and having a bit of a shout, and the doctor kind of said “Oh well she's probably got a bit of a cold we'll give her some antibiotics, if it hasn't gone come back kind of in ten days” and that was on the Thursday. We'd come down to see her grandparents and on the Monday morning sensed that she wasn't quite right again and her cold wasn't getting any better, gradually over the course of Monday morning I said to my husband “I think we ought to take her in to see the GP”. I couldn't actually get in to see the GP, he said “Oh well if you're worried about her take her up to A&E at the hospital” and gradually as the morning went on she got less and less happy and normally, if she wasn't happy I could normally feed her and that rectified anything, it sounds terrible but if she was unhappy I'd kind of put her to the breast and she was fine. And this particular morning she just didn't want anything, she was getting unhappier and unhappier, my husband came home and said “No she really isn't right” so we took her up to accident & emergency. They had a paediatric accident & emergency which was great, took her straight in and they knew straightaway there was something wrong, they whisked her into a side room, took me with her and said “No, no we've got problems here we need to try and resuscitate her she's very” I'm trying to think of a word, dehydrated, and they spent about two hours trying to basically get lines into her and to rehydrate her.
Had she been feeding or had she slowed down because of the cold?
She'd been feeding fine until the previous day and really until, even the night before she was fine and then suddenly that morning.
So it happened very quickly?
It was a very, very, very fast thing and suddenly she just presented herself as really not very well, she started to go a bit floppy and rolling her eyes around a little bit, we just knew there was something wrong.
Did you have any idea how serious it was at that stage?
No comprehension, I just thought she had probably a very bad cold, possibly an infection of some sort, we got her into A&E and we realised quite quickly, they thought I think initially it's probably pneumonia, but still we didn't really have any comprehension and then, as I say they took a couple of hours of trying to resuscitate, they couldn't get lines into her because they couldn't find any veins, which I now understand is because she basically was so ill, and they had to put lines in the end into her bone in her leg which was fairly harrowing. They were going to take her up to intensive care for a while, and we were sitting, and then one of her paediatric consultants came and said “We've just taken an x-ray and we think it might be the heart” we were kind of like “Ah” so from, she was fine to, she may have had oxygen deprivation and we may have, you know, there may be slight learning difficulties to, “Oh we think she's probably got a heart condition and she may need a transplant and she may not make it, and we were both really in a complete state of shock.
You must have been on an emotional rollercoaster at this stage?
It was, yeah it was shock, it was pretty horrible actually that first day, but they got her up to intensive care and we just kind of,
Her friends were encouraging her to wean before her daughter became very ill and required surgery...
This is while she was ill?
She was ill. And I went through quite a lot of, I suppose guilt, I spent hours saying the same to my husband, 'Oh do you think I ought to be stopping now?' and a lot of my friends were saying to me, 'You really ought to get back to normal now and it's time for you to have time, the two of you to be able to go out for dinner and, and I think it's time you need to stop breastfeeding now and get her onto a bottle and, you know, off so anyone can feed her' and I think having been through what I've been through just you really ought just to do what suits you, suits her, I have a very nice couple of hours with her in the evenings and my husband's quite happy we just kind of, you know, the three of us are quite happy together and if we go out for dinner then we'll go out for dinner that little bit later and I think I would, if we have another child which hopefully we will, I will breastfeed from the start and continue to breastfeed as and when it suits us so that we can get her onto a bottle and wean her as we have with our little girl at one, maybe without the extreme three months [laughs] in-between then we'll have had a very, very good experience really. We've had, I've had a good experience feeding her. As I say three months of not the most, not the easiest time in-between but we got through it and with a lot of help and with a lot of encouragement and she's breastfeeding, she's drinking from a cup, she's semi-weaned and she's on her way to being very healthy, and she is very healthy now, so I think anybody out there who's child needs to go through surgery and is breastfeeding to start with, if you can keep it up it, it helps you, it's, in my view, really good for them, and just it also gives you the options at the end that it's nice, the comfort of being together and, as I say, we've managed to breastfeed and bottle feed and wean all at the end of a fairly harrowing three months, if you can, if you can go through it, it really is worth it and you come out the other side.