But I think really I was just praying that she didn't have Down's, I just thought, 'Please don't let her have Down's, please don't let her have Down's'. When the doctors came into the room, on the Friday, I knew from their expressions that I knew what the news was going to be, but in some ways it was actually a little bit easier then, because then we knew, then it was absolute, then it wasn't the unknown, that was the situation. And we did have the most fantastic sort of support from family, friends, no one made my husband or I feel that Lily would be any less accepted or any less loved, and so that made a colossal difference. The nurses again that nursed us were very supportive of the breastfeeding, so I think particularly because children with Down's tend to have a lower immunity, a lower immune system, breastfeeding's, you know, almost more important to try and get something and they can also have intestinal problems, so again the kind of compatibility of the breastmilk, so they really, you know, literally sat for a few days they sat by me and just helped me with the breastfeeding, quite, you know, physically just to do it but she had to be topped up on formula.
So those were the physical reasons for breastfeeding, did anybody ever mention any emotional or bonding type reasons for breastfeeding?
Prior to Lily's birth I'd only been, I had understood from what I'd read and what I've been told that there is that kind of bond between the mother and the child when you're breastfeeding which seems totally natural and I was looking forward to that, and I think that the hospital were particularly keen that we bonded because I think they felt that there was a risk that when we, when we knew that Lily had Down's we might reject Lily, so I felt that because one of the issues on the night she was born was they kept popping in and out and were obviously debating whether she needed to go into the intensive care unit, into an incubator because of her blood sugar and body temperature but obviously felt that it was better for her to be with me. Now at the time I was quite kind of, 'Well if it's better for her to be away from me I'm not worried, you know, I'd rather what, what's best for her' but I think I realise now that again that was the, part of the judgement call for them was, if she stays with mum that bonding is more likely to take place, and when they do find out, perhaps rejection is less likely, I mean that's purely supposition on my part but that's what I think.
But in retrospect are you grateful for that?
Yes I am, yes, yeah definitely. Because when I remember lying in the bed looking at Lily and she was in the little plastic cot, and she had these, like little beady eyes and the little legs were circling away and I just thought she was the most beautiful thing I'd ever seen. When they told us that she had, or she possibly had Down's and I was trying to reconcile that I remember thinking, 'Last night I thought she was utterly beautiful, so what's changed?' Do you know what I mean what, what has changed? It's just my preconceptions, it's my prejudices that actually, you know, that's what could change this issue she isn't any less beautiful today, it's just that I'm worried for the future, so that helped, didn't it Lil?
I think the interventions were sometimes, feeling overwhelmed with the interventions came afterwards, because there were lots of times when I had to go to hospital with Lily and that can be quite wearing, it also means it's quite difficult to get into a routine because you attempt some kind of routine and then, that, you know, going into hospital, having to see, we've had to see quite a lot of clinicians, we've had to see paediatrician's, physiotherapist's, speech and language therapists, lots of people and, so sometimes that can be a bit of overwhelming, sometimes it can be like your whole life is just sort of focussed around, what worries me more is, there's a danger that our lives can become focussed around the fact that Lily has Down's Syndrome as opposed to the fact that we have a baby called Lily who just happens to have Down's Syndrome it's, you know, she's not, she's still Lily so it doesn't define her, it's just something she has. And sometimes it can get a bit, a bit sort of, well just that you spend a lot of your time going to places, going to hospital, going to various things.
One of the difficulties was that Lily wasn't symptomatic of a baby with a hole in the heart, she didn't have the traditional kind of bluey colour, she could feed well, which normally they struggled to feed because they can't breathe very easily, they're not getting oxygen into their system. And she, so she didn't have any of the sort of symptoms or, she didn't have many of the symptoms associated with that condition, the thing that was really the kind of, the thing that tipped it was the fact that she wasn't putting on weight, they realised something was going wrong and really she was just diverting all her energy from food into, her heart was actually beating at an incredibly fast rate to try and keep the pressures up, to keep the equilibrium between the chambers so that the blood wasn't flowing from one to the other, which is why she wasn't symptomatic. But it was a large hole, lower hole, so we went in, on the nineteenth of January, they operated on the twentieth of January, they basically stitched, it was open heart surgery so they opened her up, they stitched a piece of cow tissue into the lower chambers to patch the hole and they actually stitched up the hole in the upper chambers and what we are hoping, and what we've already started to see is since that operation Lily's starting to put on weight, because her energy's been diverted into just growing rather than keeping her heart going, so we've already started to see the kind of, the benefits really of that.
So can you summarise for me the effects that being Down's Syndrome and having a hole in the heart might have on breastfeeding?
The whole, the sort of the, having Down's Syndrome and having a hole in the heart and it's effects on breastfeeding as far as Down's Syndrome's concerned Lily doesn't have a mouth that's typical of the syndrome, but a lot of children with Down's Syndrome can have problems with the palate formation, they can have a larger tongue, they have difficulty with the muscles in their mouth, of being able to manipulate those muscles, so that can cause real problems in sucking, which can obviously cause a problem as far as breastfeeding is concerned because it means they've really, really would struggle to latch, we were really fortunate we didn't have that with Lily. The other, a lot of Down's Syndrome cases, I think they reckon about forty percent of them have congenital heart problems. With a congenital heart problem such as a hole in the heart you would have real problems breathing basically, absorbing oxygen into your system, so again they traditionally can't feed well because they can't suck, because they can't suck and breath it's too hard for them as well as just not being able to have the energy really to feed, so they tend to have those problems and obviously that can have a direct impact on breastfeeding. |
I think one of the key things that helped me when I first had Lily was the nurses that nursed me were incredibly supportive and the first thing we really did after Lily was born was we breastfed. So they put Lily directly onto my breast, they almost did it for me because I'd had a caesarean and I had no real feeling so I couldn't move the lower part of my body, but it was an amazing feeling. She would only have been twenty minutes old something like that, maybe thirty minutes old I can't remember exactly, but I know the pictures of her, her hair's still damp and the fact that she could do it and we could do it was really powerful for me it really meant a lot, and that was important because in the next intervening few days we couldn't actually breastfeed because her blood sugar was too low, so they were desperately trying to get food into her, but because she'd done it once I felt fairly confident that we could go back and try and do it again. We did try and do it but I knew that I couldn't actually feed her, it wasn't going to be enough, in the first sort of two or three days, but certainly that kind of experience and just the practical thing where one of the nurses showed me literally by pulling her lower lip back that got her into the kind of latching position, and then once she did it, I thought 'Oh that's how it feels' you know, I kind of knew what it meant then and sort of demystified it for me.
Did anyone explain to you why her blood sugar and her temperature were low?
When she was first born it was evident that she was quite small, she was five pounds seven ounces. She was more or less full term, she was thirty-eight weeks and I hadn't gone into labour but what had happened was, I had a midwife check. My midwife came round, who happens to be my sister-in-law and as we listened to Lily's heartbeat, I had just literally laid down on the sofa, it sounded really slow and what the midwife said to me was, “Don't panic, because often if you lie down you contract your tummy muscles, you give the baby a bit of a squeeze, it can lower their heart rate so don't worry, but we need to follow this up”. So I went into hospital and they put me on the monitor and they weren't totally happy with Lily's heart rate, it was actually too static. They wanted more of a variation. So I went in the following day and they put me on the monitor again and it became evident that Lily's heart rate was dropping for no apparent reason and on some occasions it would drop very low for quite a long period of time. So they felt that they couldn't risk her being inside of me any longer and that they had to get her out, so although they tried to induce me it had absolutely no effect whatsoever so I had an emergency caesarean, so I didn't do labour at all.
So when she was born she was small and that was a surprise because I was quite large and up until then there had been no indication that she was smaller than they would expect for a baby of her term. So it was a surprise and I also knew from the previous scans they had done, in the kind of previous twenty-four hours that I didn't have a lot of amniotic fluid which was another concern for them, which was another reason for the caesarean. When Lily was passed to me, I remember looking at her and obviously kind of being quite overwhelmed with that kind of moment, but I thought at the time 'oh are her eyes okay?' Her eyes had looked a little different to me, but I didn't know what a brand new baby looked like and it was a baby who hadn't done labour so I thought that basically she'd come from nothing into this great big wide world and we went literally straight from that, we did some breastfeeding. They took her body temperature, they took her blood sugar, they said to me “It's very low, we need to get some food inside her, you can persevere with breastfeeding, or we can give her some formula it's up to you” and I said to the nurse, “Well really, you know, I need some advice and some guidance from you because what do you think given the body temperature, given the blood sugar?” And she said, “I'll be honest I think you need to get some formula inside her now to try and get that up a bit”. Lily was born at six minutes to midnight so really for the rest of the night paediatrician's popped in and out of the room, I assumed it was literally just for that reason for the blood sugar and the body temperature which I thought was linked to her size. The next morning the consultant paediatrician came in, and it was she who told my husband and I that Lily had Down's Syndrome, so we didn't know until that point.
That was the first time you knew?
Yes it was the first time we heard.
How did you feel?
In the way the news was broken to us, the consultant thought we knew, the consultant thought we'd been told, so what she said to us was “Lily's complications” and I thought she was referring to the blood sugar and the body temperature so I just said lightly, “Oh, you know body temp, blood sugar?” I didn't think it was such a big deal, and she went, “No her Down's”. So of course it was just [pause] the shock was just immense, just huge, and because I really didn't have any suspicion myself, I hadn't picked anything up, I mean in retrospect I now realise that perhaps the reason for so many paediatricians popping in and out wasn't just because of body temperature or blood sugar or anything. Because Lily doesn't have a lot of the physical characteristics associated with Down's they weren't sure, so what they said was, “We can't be a hundred percent, we think it's likely, we don't know and we really won't know until we do DNA tests”. So they did the tests that day, that was a Wednesday, and the tests came back on the Friday, so we waited Wednesday, Thursday, most of Friday.
Did that feel like an eternity?
Yes, yeah it did.
What was going through your mind? Or was anything, I mean were you just in a blank, frozen state?
Yeah, I think I was pretty, I don't know that I was numb because it, I was too, it was too painful to be numb if you know what I mean? But, I think really I was just praying that she didn't have Down's, I just thought, 'Please don't let her have Down's, please don't let her have Down's”. When the doctors came into the room, on the Friday, I knew from their expressions that I knew what the news was going to be, but in some ways it was actually a little bit easier then, because then we knew, then it was absolute, then it wasn't the unknown, that was the situation. We did have the most fantastic sort of support from family and friends. No-one made my husband or I feel that Lily would be any less accepted or any less loved, and so that made a colossal difference. The nurses that nursed us were very supportive of the breastfeeding, so I think particularly because children with Down's tend to have a lower immunity, a lower immune system, breastfeeding's, you know, almost more important to try and get something and they can also have intestinal problems, so again the kind of compatibility of the breastmilk. So they really, you know, literally sat, for a few days by me and just helped me with the breastfeeding, you know, physically just to do it but she had to be topped up on formula.
So those were the physical reasons for breastfeeding, did anybody ever mention any emotional or bonding type reasons for breastfeeding?
Prior to Lily's birth I had understood from what I'd read and what I've been told that there is that kind of bond between the mother and the child when you're breastfeeding which seems totally natural and I was looking forward to that, and I think that the hospital were particularly keen that we bonded because I think they felt that there was a risk that when we knew that Lily had Down's we might reject Lily. I felt that one of the issues on the night she was born was they kept popping in and out and were obviously debating whether she needed to go into the intensive care unit, into an incubator because of her blood sugar and body temperature but obviously felt that it was better for her to be with me. Now at the time I was quite kind of 'well if it's better for her to be away from me I'm not worried, you know, I'd rather what's best for her' but I think I realise now that was part of the judgement call for them. If she stays with mum that bonding is more likely to take place, and when they do find out, perhaps rejection is less likely, I mean that's purely supposition on my part but that's what I think.
But in retrospect are you grateful for that?
Yes I am, yes, yeah definitely. Because when I remember lying in the bed looking at Lily and she was in the little plastic cot, and she had these, like little beady eyes and the little legs were circling away and I just thought she was the most beautiful thing I'd ever seen. When they told us that she had, or she possibly had Down's and I was trying to reconcile that I remember thinking 'last night I thought she was utterly beautiful, so what's changed?' do you know what I mean what has changed? It's just my preconceptions, it's my prejudices that actually, you know, that's what could change this issue. She isn't any less beautiful today, it's just that I'm worried for the future. So that helped, didn't it Lil? (talks to baby). They gave her formula for the first two or three days, really just to try and get her over this hurdle, because both problems were sort of interlinked, if she could lift her blood sugar her body temperature would rise as well.
How did they feed it to her?
Initially we had to feed through a, well it was actually a syringe initially. After the initial breastfeeding sort of success because her energy levels dropped so low she wasn't really able to suck at all, so we fed her through a syringe and then one of the specialist nurses from the Intensive Paediatric Unit came over to feed her because she was really not interested and I couldn't get her to drink really. Then we just started doing a little bit of breastfeeding, I don't think she was getting a lot of milk but we were just doing that, kind of practicing and I think certainly by the time we left hospital we were exclusively breastfeeding. We did some expressing in the two to three days when she was on the bottle and I wasn't breastfeeding her we expressed.
Did you feed her that expressed milk?
Yes, yes I mean it was a tiny, tiny, tiny amount, I mean I just thought this is worthless but the nurses said, “No, no”. I think Lily having gotten over her initial problems just energy really, just seemed to know what to do, she just instinctively knew what to do, and, you know, because I was in hospital I had nothing else to do I mean I wasn't at home, I wasn't being sort of distracted by anything else, so I was able just to sit and feed her and she really fed virtually all the time. I don't know that she was getting that much milk necessarily but we were just doing the breastfeeding and that kind of thing, so that by the time we came out of hospital I was quite confident that I could breastfeed her, and I guess having been in hospital for that amount of time helped as well as ordinarily I would have been out perhaps in two or three days.
So this was day and night you were feeding and was she with you at night in your room?
Lily was with me at night, she was in the room and because she had a low blood sugar tended to be very sleepy. So I actually had to set an alarm, wake myself up to wake her up to feed her, but just so that we got into the habit of getting up at two to feed, six to feed, that sort of thing.
So through the night it was every four hours?
Yeah.
And in the day almost constant?
Almost constant yes, yeah, I mean she slept, she literally fed slept, fed slept, but seemed quite happy, I mean she didn't seem to get distressed or unhappy. She didn't appear to get desperately hungry although she presumably must have been, she never got kind of upset about things, she was quite laid back, but again I think that was related to her low blood sugar and so she didn't have as much energy perhaps as she would have done.
How did you know she was getting enough?
Well there were two ways, for me personally I just relied on her feeding when she wanted to feed and not feeding when she didn't. But they actually had to monitor her blood sugar very closely so she was being monitored every hour, and when it was low they would top her up with a bottle, so they would then say “right” you know, and sometimes she wouldn't feed for very long but the blood sugar would be quite high, and other times she might have fed for a very long time where the blood sugar would be low and they'd have to top her up, so it wasn't clear to me as the mum giving her the milk when it was working and when it wasn't working, but the only way they could do it, if you like scientifically I guess, was just to actually, you know, test her, put a needle in her foot and take some blood and analyse the blood. One of the reasons they didn't let us leave hospital until the eighth day was they had to be comfortable that she was surviving really on my breastmilk and that she was maintaining her blood sugar, which she was. She developed quite bad jaundice towards the end of her hospital stay, which I understand is not uncommon with breastfed babies anyway.
Can you tell me a bit more about that?
Yeah I mean, obviously on top of everything [laughs] the fact that she then went very yellow even although you know that in young babies particularly babies that are exclusively breastfed jaundice is quite common, it is quite disconcerting to see your little baby going a very yellow colour. She immediately was put under the lights, the sort of lights that give them a sort of effect of sunlight to try and address some of the bilirubin levels in her blood. [See Footnote 2 in 'Talking about: Managing breastfeeding: Dealing with difficult times']. That worked very quickly, it seemed to be very effective, so she was taken off the lights but it shot back up again, so she was put back under the lights and in order for her to have maximum impact they stripped her, so she was totally naked, she was just lying with little goggles and a little yellow body in an incubator with the lights on. The jaundice cleared but not totally, but again we were really anxious to get home.
So were you taking her out of the incubator to feed her, still quite regularly?
Yes, yes I was physically lifting her out. Yes absolutely yes, so she was being lifted out the incubator, as and when she woke up to feed really and we were feeding and then putting her back in the incubator, back under the lights. And her jaundice cleared but not completely, her blood sugar stabilised, her body temperature stabilised, they weren't brilliant but they were good enough. They basically allowed us then to come home, but obviously we had to sort of assure them that we would monitor things very carefully. One of the things they were very anxious about was if she was having enough wet nappies. And also when she was having a dirty nappy what was the colour of the poo? Because the jaundice didn't clear we had to go back into hospital and they had to run some tests on her because they weren't happy that it hadn't cleared, so they were a little concerned that there was a liver problem. There wasn't as it happened, but we had to go back in. They have got a very strict protocol that if they haven't cleared the jaundice by twenty-one days the hospital run through various tests which include analysing her urine, her poo, all those things, but she's always had good wet nappie's, she's never sort of appeared dehydrated in any sort of shape or form so that was good. So we carried on for three months really breastfeeding.
By the time you came out of hospital, you must have been feeling like you'd had every intervention under the sun and totally overwhelmed, can you remember that?
Yeah, I don't remember feeling overwhelmed by the intervention at that point, I think because I had been in hospital I had been insulated really against quite a lot. I was actually relatively lucky although I find I didn't enjoy being in hospital, I think I was relatively lucky to be able to stay there. I think feeling overwhelmed with the interventions came afterwards, because there were lots of times when I had to go to hospital with Lily and that can be quite wearing. It also means it's quite difficult to get into a routine because you attempt some kind of routine and then, that, you know, going into hospital, we've had to see paediatrician's, physiotherapist's, speech and language therapists, lots of people and, so sometimes that can be a bit overwhelming. What worries me more is, there's a danger that our lives can become focussed around the fact that Lily has Down's Syndrome as opposed to the fact that we have a baby called Lily who just happens to have Down's Syndrome. She's still Lily so it doesn't define her, it's just something she has. Sometimes you spend a lot of your time [laughs] going to places, going to hospital, going to various things.
Do you think that will get less?
I think so yes. We've been very lucky that all that help's been there, we haven't had to go out and fight for it, it's been on our doorstep, in fact they've almost been knocking down the doors to get to us, so we've been really lucky in that regard and I do think it will get less. Initially in the first sort of twelve months I think it's quite intense and I think it probably eases off as she sort of hits all key development points. The reason that we moved from exclusive breastfeeding to mixing breastfeeding with formula was really because of Lily's weight. She simply wasn't putting on enough weight and I was thinking 'But she's feeding all day long how could she not be [laughs] putting on weight she's feeding all day long', so what they originally suggested was that we give her some formula in the evening, which we did, then because it still hadn't improved that we give her, we offer her formula after the breastmilk, and I felt fairly comfortable that particularly during the day she wouldn't take formula, I felt that she would be more than satisfied with the amount of breastmilk that I was producing, but she did on occasion take some formula, I think the underlying reason that Lily didn't put on weight was her subsequent heart diagnosis, because that wasn't diagnosed initially. So in some ways I wish I'd persevered a bit with the breastfeeding because I didn't, I thought 'Alright no she's really dropping off the chart, she's dropping off that little kind of graph' [pause], I mean I need to do something and, you know, the formula seemed the obvious way to help her put on weight, whereas now I know that really I think that the real reason was the fact that she had a problem with her heart. Virtually all her energy was being invested in keeping her heart going, keeping the system going and if we had known that I think we would have been able to do something a bit differently, but that's the kind of benefit of hindsight really.
The hardest thing for me was the fact that I had to wake her up, again because it was so contrary to what I'd been led to believe prior to giving [laughs] birth was that I would be up all night with this screaming baby. Lily as evident here, can sleep beautifully and she used to sleep through the night so I had to wake her up. I didn't want to set an alarm because I was kind of conscious of my husband as well, I didn't want to kind of wake him up if that could be avoided, so internally I sort of set my own little alarm, but I mean that wasn't particularly successful because you don't really, you lie there and worry that you're going to sleep through your own little alarm, so in the end I just set my little alarm. It would go off at two o'clock in the morning, I would get up, pick her out of the Moses basket, take her into the nursery, because Lily sleeps in our bedroom in a Moses basket with us, so I would take Lily into the nursery, just sit down, and breastfeed. Very low key, no lights, kind of soft lights, try and not wake her up too much and change the nappy first of all so get the kind of disruptive bit of the way, and then breastfeed for as long as she wanted to and then put her back down. I didn't really sort of talk to her, I'd try to keep things quite kind of calm in order not to try and excite her so that hopefully she wouldn't wake up too much and therefore she would go back down, which she did in fairness to her, she always went down. So I generally would feed her sort of at ten, then feed again at two in the morning, and then feed her again at six in the morning, and when my husband got up so that's how we sort of did it. But it was me waking Lily up rather than Lily waking me up to do that, so that was kind of unexpected for me.
How long did you continue that routine?
I continued it certainly for three months whilst we were breastfeeding. Between three and four months I think we decided that she was getting quite a bit of formula so I was comfortable as she was sleeping to let her sleep through the night, when she started to fall off the charts I then sort of thought 'Oh you know should I be waking her up and feeding her?' which I tried to do but she really wasn't interested, she just didn't really want to feed at that time, so what I did was I just made sure that she got the requisite number of feeds in, if you like, daytime so between sort of six and midnight really, and that she went for six hours at night, which she's always done quite happily and does so now really. So she's very good in that respect, aren't you Lily?
At what stage was Lily's heart condition diagnosed?
When she was first born, when we had conclusive DNA results that she had Down's Syndrome they scanned her the next day. The scanner they were using wasn't a cardiac scanner, but it was a paediatric scanner and they thought she had two small holes in her heart but they couldn't be sure so she was referred to the cardiac unit at [local hospital], and initially the diagnosis was that, the hole in her upper heart was small, and the other hole looked as if it had closed over. But they obviously weren't quite happy with the pressures in her heart and the pressure of the blood being pumped into her lungs and they asked us to come back because they felt she was quite small, they weren't sure they were seeing the whole picture really. So we went back just before Christmas, twenty-first of December, and in fact the diagnosis then was quite different to the original diagnosis. We were told that she had a hole between the upper chambers of the heart, which was small, but she had a very large hole in the lower chambers, known as a VSD. It was large enough for them to be worried that they wanted her in and operated on quite quickly, so we were told on the twenty-first of December, we met the surgeon on the twenty-second of December, and the operation was on the twentieth of January, so it was quite a quick process.
How old was she at that stage?
She was four months at that stage, so she was just sort of between four and five months. One of the difficulties was that Lily wasn't symptomatic of a baby with a hole in the heart. She didn't have the traditional kind of bluey colour, she could feed well, which normally they struggle to feed because they can't breathe very easily and they're not getting oxygen into their system. She didn't have many of the symptoms associated with that condition. The thing that tipped it was the fact that she wasn't putting on weight, they realised something was going wrong and really she was just diverting all her energy from food. Her heart was actually beating at an incredibly fast rate to try and keep the pressures up, to keep the equilibrium between the chambers so that the blood wasn't flowing from one to the other, which is why she wasn't symptomatic. But it was a large hole, lower hole, so we went in, on the nineteenth of January, they operated on the twentieth of January. It was open heart surgery so they opened her up, they stitched a piece of cow tissue into the lower chambers to patch the hole and they actually stitched up the hole in the upper chambers and what we are hoping, and what we've already started to see since that operation Lily's starting to put on weight, because her energy's been diverted into just growing rather than keeping her heart going, so we've already started to see the benefits really of that.
So can you summarise for me the effects that being Down's Syndrome and having a hole in the heart might have on breastfeeding?
Having Down's Syndrome and having a hole in the heart and it's effects on breastfeeding as far as Down's Syndrome's concerned is that Lily doesn't have a mouth that's typical of the Syndrome, but a lot of children with Down's Syndrome can have problems with the palate formation. They can have a larger tongue, they have difficulty with the muscles in their mouth, of being able to manipulate those muscles, so that can cause real problems in sucking, which can obviously cause a problem as far as breastfeeding is concerned because it means they really, really would struggle to latch. We were really fortunate we didn't have that with Lily. I think they reckon about forty percent of Down's Syndrome cases have congenital heart problems. With a congenital heart problem such as a hole in the heart you would have real problems breathing basically, absorbing oxygen into your system, so again they traditionally can't feed well because they can't suck, because they can't suck and breath it's too hard for them as well as just not being able to have the energy really to feed, so they tend to have those problems and obviously that can have a direct impact on breastfeeding.
So can you tell me what differences you noticed when you switched from the breastfeeding to the bottle feeding?
I think one of the key differences that I noticed with the bottle feeding versus breastfeeding was for Lily, she almost instantly became constipated and obviously that was quite disappointing. It's really hard because they can get really uncomfortable with constipation. We had to resort to orange juice and then prune juice we tried them on the advice of my health visitor but in my view they both clearly made her very gripey so you could tell that although it was perhaps alleviating some of the constipation she was clearly in a lot of pain. She doesn't cry she's a very contented baby but she would really cry because her tummy was obviously very sore. And that's something she still has a problem with to be honest, with constipation, I think the formula definitely doesn't agree with them as well as the breastmilk. When she was being breastfed we had no problems whatsoever and in fact when she was being breastfed she wasn't sick. She hasn't been sick often but she has been sick a few times with the bottled milk, and I just don't think it's, it simply isn't as compatible, however much the manufacturers say it's as like to breastmilk as they can make it sort of thing it's just not the same.
The other thing with bottle feeding that I personally am not as comfortable with although I can understand why some people might kind of be more comfortable with it is that it's much more of a regimented routine, it's much more, you know, every three hours, every four hours. With the breastfeeding it's very much more on demand and therefore felt more natural in that respect, and because sometimes I'll make bottles up for Lily and I don't think she probably is that hungry but because it's half past six in the morning that's when she's getting it. But equally then there's a sort of sense of structure around your feeding patterns so you know what you're giving them but personally I was kind of more comfortable with the kind of on demand when Lily was hungry really than a timetable to be frank.
What would you like to say to other mothers in your situation?
I think if you are able to try and avail yourself of the support, of clinicians like nursing staff, health visitors, midwives as far as supporting you through breastfeeding, just the practical stuff about how to do it, how to get the kind of latch right and I think go with your instincts. From my perspective I actually felt that when I read about it and when I was told about it before I actually did it, it sounded a lot more complicated and a lot harder than I thought it was going to be. There was almost a sort of mythology around it. There are practical things that I think you need to know about to do to help, try and minimise your infection of mastitis, that sort of thing, practical things around the latch but I remember when I met up with my friends in my antenatal group I was breastfeeding Lily and she was being noisy she was sort of slurping, and one of the girls said “Oh doesn't that mean that she hasn't latched properly” and I said “No, no she's fine [laughs] she's okay” I think you can get too hung up on stuff, I think as long as the baby's happy and they're relaxed and you're enjoying it then I think that's the most important thing, I don't think it has to be textbook.
As long as you can, hopefully sustain it for as long as you want to really. Go with your instincts, I do regret that I gave up on the breastfeeding, I wished now I had persevered, even if I just kept going and topped up with the formula, particularly with the recent operations that Lily's had I think I would have been more comfortable with it if I had been breastfeeding. Obviously I did what I thought was right at the time but in retrospect I would probably do it differently.
How do you deal with that regret?
I think you just have to be sensible about it and think you did what you thought was right at the time and if in retrospect you think well I have a different view well you just have to accept that sometimes things aren't what they seem. To be honest the clinicians were fooled they didn't realise the extent of her heart problem, they didn't realise that this was really causing the lack of weight gain so, you know, maybe if we'd been a bit clearer about that then it would have been different but I don't think you can beat yourself up, I think you've got to enjoy being with them that's the most important thing, and not get too hung up on things. |
