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	<title>ibreastfed.com &#187; Baby medical condition</title>
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	<link>http://ibreastfed.com</link>
	<description>Inspirational breastfeeding stories</description>
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		<title>Breastfeeding a seriously ill child through heart surgery and tonnes of other hurdles &#8211; Selena&#8217;s story</title>
		<link>http://ibreastfed.com/2011/03/breastfeeding-a-seriously-ill-child-through-heart-surgery-and-tonnes-of-other-hurdles-selenas-story</link>
		<comments>http://ibreastfed.com/2011/03/breastfeeding-a-seriously-ill-child-through-heart-surgery-and-tonnes-of-other-hurdles-selenas-story#comments</comments>
		<pubDate>Sun, 13 Mar 2011 07:09:31 +0000</pubDate>
		<dc:creator>mary</dc:creator>
				<category><![CDATA[Baby medical condition]]></category>
		<category><![CDATA[Baby surgery]]></category>
		<category><![CDATA[Failure to thrive]]></category>
		<category><![CDATA[Low weight gain]]></category>

		<guid isPermaLink="false">http://ibreastfed.com/?p=2116</guid>
		<description><![CDATA[My daughter was diagnosed at 18weeks gestation as having &#8220;heart issues&#8221;. We had ultrasounds every 2 weeks but nobody could definitively tell me what was wrong with her heart. The night she was induced was incredible. I had a 2hr labour and the waters broke, she was born and the placenta were all delivered with [...]]]></description>
			<content:encoded><![CDATA[<p>My daughter was diagnosed at 18weeks gestation as having &#8220;heart issues&#8221;. We had ultrasounds every 2 weeks but nobody could definitively tell me what was wrong with her heart.</p>
<p>The night she was induced was incredible. I had a 2hr labour and the waters broke, she was born and the placenta were all delivered with 15 mins start to finish.</p>
<p>On her birth she had snapped her cord so had blood loss and was double clamped as the tissue was torn and not a good hold. She was blue from the start and needed oxygen.</p>
<p>On day 1 she was diagnosed as having a murmur but on day 4 it was declared as Tetralogy of Fallot.</p>
<p>My world crashed in on me that day.</p>
<p>Here I was a divorced single mum with three older children and a child with severe medical condition.</p>
<p>Luckily she was also born with an in bred ability to find and attach to the breast. She has fed well from the very beginning and I had no problems with mastitis as I did with my other children.</p>
<p><img class="alignleft size-medium wp-image-2119" title="sl01" src="http://ibreastfed.com/wp-content/uploads/2011/03/roxie-300x225.jpg" alt="sl01" width="300" height="225" /></p>
<p>At 13 weeks old she had minor surgery involving a 2 week stay with me by her side the whole time expressing away until she could take 5ml an hour, 4 days post op.</p>
<p>When we got home she was having trouble gaining weight and was diagnosed failure to thrive. On no less than 5 occasions I was told to wean her &#8220;for hr own sake&#8221; but I was determined that she needed my milk more than anything else.</p>
<p>She has sensory issues with spoons etc from being forced medications orally and intubations. The only thing she would allow near her mouth was a breast. She is behind developmentally by around 4mths physically and in speech.</p>
<p>She has extremely low iron which is borderline anemic even whilst she is taking supplements.</p>
<p>By 6 mths she weighed just 5kg, at 12mths 7kg and now at 16mths she still weighs only 7.6kg.</p>
<p>She had more minor surgery in Oct 2010 aged 10mths and I was there expressing away again.</p>
<p><img class="alignleft size-medium wp-image-2120" title="sl02" src="http://ibreastfed.com/wp-content/uploads/2011/03/roxie1-300x225.jpg" alt="sl02" width="300" height="225" />And now we are preparing for  major Open Heart Surgery this time which keeps getting put off because of the cell counts in her blood.. But I will be there again, sleeping over and expressing away so as I can continue our journey.. And I&#8217;m so passionate about breasfeeding that I&#8217;m training to be a part of the Australian Breastfeeding Association Community Education Team..</p>
<p>&#8216;Im so glad I have never listened to health professionals who have been telling me to wean so they can see how much she is drinking. I know how much she is drinking&#8230; enough to keep her safe, secure and nourished.. Roxie knew exactly what she was doing when she picked me to be her mum and to advocaate for her right to breastfeed through her surgical journey.</p>
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		<slash:comments>4</slash:comments>
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		<title>Breastfeeding through separation, heart surgery and beyond!! &#8211; Rebecca&#8217;s story</title>
		<link>http://ibreastfed.com/2010/10/breastfeeding-through-separation-heart-surgery-and-beyond-rebeccas-story</link>
		<comments>http://ibreastfed.com/2010/10/breastfeeding-through-separation-heart-surgery-and-beyond-rebeccas-story#comments</comments>
		<pubDate>Wed, 06 Oct 2010 04:24:01 +0000</pubDate>
		<dc:creator>mary</dc:creator>
				<category><![CDATA[Baby medical condition]]></category>
		<category><![CDATA[Baby surgery]]></category>
		<category><![CDATA[Caesarean/cesarean birth]]></category>
		<category><![CDATA[Expressing]]></category>
		<category><![CDATA[Separation of mother and baby]]></category>

		<guid isPermaLink="false">http://ibreastfed.com/?p=2095</guid>
		<description><![CDATA[Although my first son was born naturally, after already 3 weeks in hospital with severe pre-eclampsia it was crystal clear that my second child would be delivered by C/S &#8211; a hindrance for breastfeeding, or so I have heard. After already nourishing my first child with mothers milk for 22 months I was confident I [...]]]></description>
			<content:encoded><![CDATA[<p>Although my first son was born naturally, after already 3 weeks in hospital with severe pre-eclampsia it was crystal clear that my second child would be delivered by C/S &#8211; a hindrance for breastfeeding, or so I have heard. After already nourishing my first child with mothers milk for 22 months I was confident I had the required skills under my belt for a second successful journey!!</p>
<p>In the very early hours of the 8th December 2008, my health took a turn and my son was born by emergency instead of elective C/S at 37 weeks. I knew this was how my baby was to be born though and still had dreamy visions of laying him on my chest and breastfeeding him seconds after birth. After what seemed a life time though, the doctors ran with him out the door and down the hall while a nurse was left behind to explain to my husband and I that he wasn&#8217;t coping very well with life. A few hours later, before I was in a position to even lay eyes on him, I was told that the Royal Flying Doctor Service were sending up a retrieval from the Mater Childrens Hospital who would be escorting him back to Brisbane soon after they arrived. My legs were still numb from the spinal but I knew if I didn&#8217;t get out of my hospital bed and into a wheelchair, I wouldn&#8217;t get to see him before he left&#8230;. or maybe even alive. At around 8am and 6 hours after his delivery, I pushed through the intense pain and got out of bed and into a wheelchair. I made it to the SCN in time where I was able to see my boy strapped up inside the transport cot before they wheeled him out.</p>
<p>For the next 3 days, I remained in my local hospital while my son was 700km&#8217;s away and very very sick. I spend this time expressing while looking at a single photograph of my son that a nurse took for me before he left.  The photo though was of a baby that I had never touched, who was fully ventilated and covered in wires. Combined with an early and sudden delivery, it was not enough to produce even a drop of colostrum. Well meaning friends told me to give up on the idea of breastfeeding. It&#8217;s too hard, it&#8217;s too stressful they would say. At this point though, sitting in hospital alone trying to get that one drop of anything for my newborn son was the only thing keeping me focused and preventing me from crumbling.</p>
<p>While in hospital in Brisbane, my son was fed nutrients from a drip in preparation for my arrival. I asked my husband if they were giving him any formula at all.</p>
<p>He said no, a nurse told him that the drip was a far better option, especially for a child so sick.  On the afternoon of the 3rd full day of mother/baby seperation, I was transferred to Brisbane with the RFDS as an inpatient. I was myself still very unwell with pre-eclampsia and was admitted into the Mater Mothers Hospital where I remained for a further 8 nights before moving into Ronald McDonald with my husband. On arrival I was so excited to be so close to be near my baby though who was only 3 levels down in the NICU!!  I soon as I lay eyes on him, I felt the milk flow in and within seconds they were full and hard and leaking!!</p>
<p>Before I arrived my son had already been through 1 minor surgery to keep him alive in preparation for his major operation on his heart. A nasal gastric tube was inserted for feeding now that I had arrived and I got straight onto expressing. I was still not able to hold him as he was in a sterile environment but just looking at him was enough to keep some milk up and I expressed about 25ml&#8217;s every 4 hours&#8230; sufficient when he was only on about 2ml an hour!! Because of his limited intake, over the next few days I managed to collect a fairly impressive frozen stockpile!! (For some reason I never did produce any colostrum.)</p>
<p>On day 7 after his marathon 9 hour open heart surgery (and now in PICU at the Childrens Hospital accross the road) he was nil by mouth for around 7 days.</p>
<p><img class="size-medium wp-image-2097  alignleft" title="8 days old just after his first open heart surgery" src="http://ibreastfed.com/wp-content/uploads/2010/10/700-A_few_hours_post_surgery_-_15th_December_2-300x225.jpg" alt="8 days old just after his first open heart surgery" width="300" height="225" /></p>
<p>I was still expressing around the clock to keep up supply and was pleased that beside his bed in the PICU was a breast pump that I could use whilst being right next to my baby. I was frustrated by my pesky 20-25ml efforts, but the nurses were exceptionally encouraging and put on a fanfare every time I added another (albeit small) container to the freezer!!</p>
<p>After his week of nil by mouth, they began weaning him onto 1ml an hour then 3ml an hour etc of EBM through the NG tube. We were able to cuddle him at this point but I still couldn&#8217;t put him to the breast as he was too heavily dosed on drugs. I was determined to not let the stress of open heart surgery combined with not putting bub to the breast affect our breastfeeding relationship outside hospital life.</p>
<p>25ml&#8217;s was not a not ideal in normal circumstances but I had to remind myself not to stress and remain practical. The pump of course was not withdrawing what my baby would.</p>
<p>At just over 2 weeks old I put him to the breast for the first time. To my astonishment, he latched on beautifully and drank an entire feed. You wouldn&#8217;t believe how pleased I was!! :D Here was my frail, scrawny little baby, having lost 900g and now just under 2kg looking up at me as if to say &#8220;mamma, where have you been my whole life!!&#8221; Up until this point.. friends and family would still persist by putting their hands on my shoulder and say things like &#8220;let it go, give him a bottle, people will understand, it&#8217;s too much pressure on you.&#8221; The thing is though that for me, the thought of NOT being able to BF was far more stressful then the round the clock expressing!!</p>
<p>I went home from hospital with LOADS of EBM but I made a decision to throw it away. At that point, successful BFíng was still too good to be true and I did not want to compromise that by giving him a bottle. I should also mention that they did offer to feed DS2 the EBM though a bottle rather then the NG tube once he was improving from surgery&#8230; but before I could hold him at the breast. I declined this and preferred that he be fed through the NG tube. They didn&#8217;t care either way, but I really didn&#8217;t want to have attachment issues and I believe this was the absolute best decision and reason why we got such a good attachment first go.</p>
<p>My son is now 22 months old and still enjoying mothers milk. I have now successfully breastfed though a 3 day 700km separation from my son at birth.</p>
<p><img class="size-medium wp-image-2100  alignleft" title="21 months old 4 days after his second open heart surgery" src="../wp-content/uploads/2010/10/700-25_Sep_-_First_feed._Around_8pm_8-200x300.jpg" alt="21 months old 4 days after his second open heart surgery." width="200" height="300" /></p>
<p>We have breastfed though 2 minor surgeries -</p>
<p>the first at one day old and the second at 5 months old. We have also successfully breastfed though 2 major open heart surgeries, the first at 7 days and his second on the 23rd of September 2010 at 21 months old. Together my son and I got through it all without a drop of formula and I can proudly say that he has been the healthiest &#8216;sick&#8217; kid I know. Actually he has the best general health of any kid I have come across and has experienced only 1 mild cold, has never had gastro, vomiting or so much as an ear infection either despite me being told over and over how much more susceptible he is to these things. I am exceptionally proud of our breastfeeding relationship and can advocate first hand how possible it is to BF even in the most extreme and extenuating circumstances. A little determination goes a long way!!!</p>
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		<title>Breastfeeding &#8220;Peeper&#8221; &#8211; Whozat&#8217;s story</title>
		<link>http://ibreastfed.com/2009/10/breastfeeding-peeper-beths-story</link>
		<comments>http://ibreastfed.com/2009/10/breastfeeding-peeper-beths-story#comments</comments>
		<pubDate>Fri, 16 Oct 2009 11:38:14 +0000</pubDate>
		<dc:creator>mary</dc:creator>
				<category><![CDATA[Baby medical condition]]></category>
		<category><![CDATA[Breast refusal]]></category>
		<category><![CDATA[Exclusive expressing]]></category>
		<category><![CDATA[Expressing]]></category>
		<category><![CDATA[Finger feeding]]></category>
		<category><![CDATA[Latch problems]]></category>
		<category><![CDATA[Nipple confusion]]></category>
		<category><![CDATA[Nipple pain]]></category>
		<category><![CDATA[Nipple shields]]></category>
		<category><![CDATA[Premature baby]]></category>
		<category><![CDATA[Supplemental nursing system (SNS)]]></category>

		<guid isPermaLink="false">http://ibreastfed.com/?p=1647</guid>
		<description><![CDATA[For as long as I can remember, I have wanted to be a mother. When I became pregnant at the age of thirty-nine, by in vitro fertilization using my partner &#8220;Shrike’s&#8221; eggs and anonymous donor sperm, one of the things I looked forward to most was breastfeeding. It was something I&#8217;ve always found fascinating, so [...]]]></description>
			<content:encoded><![CDATA[<p>For as long as I can remember, I have wanted to be a mother.</p>
<p>When I became pregnant at the age of thirty-nine, by in vitro fertilization using my partner &#8220;Shrike’s&#8221; eggs and anonymous donor sperm, one of the things I looked forward to most was breastfeeding.</p>
<p>It was something I&#8217;ve always found fascinating, so I’d done a good bit of reading and I had also learned a lot about it from my older sister, whose children were breastfeeding when I was in my late teens and early twenties, so I went into it thinking I knew pretty much all I needed to know, and expecting that we would have no problems.</p>
<p>Boy, was I wrong.</p>
<p>Our daughter, &#8220;Peeper&#8221;, was born four weeks early. I delivered her vaginally, with no pain medication. Shortly after her birth, we were told that she weighed five pounds, four ounces, and that she was doing very well, especially considering her size and age.</p>
<p>I gave her an opportunity to nurse fairly soon after birth, with the help of my doula and La Leche League leader, DoulaK.</p>
<p>She latched a bit, and DoulaK said that her technique looked good, and her suck looked strong, but she wasn&#8217;t especially interested. DoulaK told me not to worry, because she had twenty-four hours before the doctors really expected her to do much nursing.</p>
<p>That night, and the next day, I gave her several opportunities to nurse, often with the help of one of the midwives or labor and delivery nurses. She had a couple of pretty good sessions, but was still very sleepy and not especially motivated.</p>
<p>Her mouth was so tiny that it was difficult to get around my nipple, let alone to get the good, deep latch that she really needed.</p>
<p>Another problem she was having with latching was that my areolas were swollen, making the nipples stand out less, so there wasn&#8217;t much for her to grab on to. One of the nurses commented that, &#8220;Oh there&#8217;s often some swelling after delivery, that will go away.&#8221;</p>
<p>I learned later that the swelling was probably exacerbated by the IV fluids I&#8217;d received during labor, and a couple of days later, from engorgement as my milk came in, but that a simple reverse pressure technique would have temporarily relieved it, and made my nipples more accessible to her.</p>
<p>One of the lactation consultants stopped by to see us the morning after she was born, but Peeper had just finished nursing, so we didn&#8217;t put her to the breast for the LC to observe.</p>
<p>One of the first things she told me when she walked into the room was that, &#8220;Most of our preemies need to be supplemented. I recommend a breast pump and a nipple shield and she may need some formula.&#8221;</p>
<p>A while later, both devices were delivered to my room, with little or no explanation of how to use them.</p>
<p>When Peeper was about twenty-four hours old, she was weighed again, and was now four pounds, four ounces.</p>
<p>The pediatrician who saw her that night said that he didn&#8217;t believe she had really lost almost 20% of her birth weight, because she “looked too good.”</p>
<p>I also later read that babies whose mothers have received IV fluids during labor are often born retaining quite a bit of fluid, and can easily lose 20% with no ill effects because they started out ahead of the game.</p>
<p>The doctor told us that he suspected Peeper&#8217;s birth weight wasn&#8217;t accurate, but that we&#8217;d have to assume she had lost a full pound, and go from there.</p>
<p>I agree that the birth weight wasn&#8217;t accurate &#8211; or, possibly, was elevated because of the fluids. I&#8217;d had very frequent ultrasounds during my pregnancy, and we&#8217;d known since 17 weeks that she was small, about 2 &#8211; 3 weeks behind her gestational age.</p>
<p>Based on the 10% of birth weight that babies are &#8220;allowed&#8221; to lose, combined with extrapolating from my ultrasounds, we suspect that she actually weighed about 4 lb 12 oz. That&#8217;s the weight that we put on the birth announcements, and it&#8217;s what we tell strangers in the grocery store, who are surprised to hear how old she is, because she is still quite small for her age.</p>
<p>But, assuming she had lost 20% of her birth weight, the doctor said that we would have to start supplementing her, with breast milk if possible, or formula if &#8220;necessary.&#8221;</p>
<p>I was adamant that she not get any artificial nipples, so we were told we could finger feed her using a supplemental nursing system, and could also try using the SNS at the breast, when she was willing to latch.</p>
<p>I was also adamant that she not have any formula, but the pediatrician insisted that she must take in X amount of food (the amount per feeding increased over the next few days) and if I couldn&#8217;t pump enough, we would have to give her formula as well.</p>
<p>I had received essentially no instruction on how to use the pump, so I just stuck it on me and turned it on for about ten minutes.</p>
<p>The insides of the bottles were foggy when I finished, but not even a drop of colostrum could be collected to give to her from that first session. It was incredibly disheartening.</p>
<p>I knew that I was producing some, because I was able to express a few drops when trying to get her to latch, but there wasn&#8217;t enough to pump yet.</p>
<p>I don&#8217;t remember the exact amounts, but the next time I pumped, I think I got about five or six milliliters, and the doctor wanted Peeper to have fifteen, so we mixed it with about ten milliliters of formula.</p>
<p>I was crushed.</p>
<p>By the next feeding, I was able to pump enough to match the amount that she was required to take, so we didn&#8217;t have to add any formula, but the pressure to produce enough for her was unbelievable.</p>
<p>Each time I pumped I could see that what I was producing was slowly changing over from colostrum to true milk, and I was getting a bit more each time, but the amounts were still tiny, and I was absolutely obsessive about capturing every tiny bit.</p>
<p>I wasn&#8217;t at all confident that I could make as much as she needed, but I knew that I wanted her to get every drop that I made, and if we had to &#8220;top her off&#8221; with formula after that, I could live with it.</p>
<p>That is a lie.</p>
<p>I actually hated the idea of her getting any formula at all, but I told myself I could live with it, because I was being told that Peeper couldn&#8217;t live without it, so I felt I had no choice.</p>
<p>Peeper was born on a Monday afternoon, and on Wednesday afternoon, I was discharged and she was transferred to the Pediatric ward, where Shrike and I were able to room in with her.</p>
<p>The routine at that point was that, every three hours, I would put her to the breast and attempt to get her to latch, usually using the SNS.</p>
<p>She sometimes nursed a tiny bit, but more often, she refused. She would sometimes fall asleep at the breast; other times, she actively fought it.</p>
<p>These attempts usually involved at least three people &#8211; not counting Peeper. I would hold her body with one arm and support my breast with the other hand, a nurse would grab her head and shove it onto my breast (very counterproductive, in retrospect) and Shrike would try to thread the SNS tube into her mouth at just the right moment.</p>
<p>She absolutely hated the SNS tube, and it would fall out or she&#8217;d let go or she wouldn&#8217;t latch at all.</p>
<p>This would go on for about fifteen minutes &#8211; later, I was actually given a time limit for how long we were allowed to work on getting her to latch before supplementing &#8211; and then we would give up, and Shrike would finger feed her expressed breast milk while I would pump for the next feeding.</p>
<p>This process generally took about an hour. Then we&#8217;d rest or, if we were lucky, sleep for a couple of hours until it was time to do it all again.</p>
<p>At some point on Wednesday, it was determined that Peeper was jaundiced (as is to be expected with a 36-weeker) and she was put under bililights, which meant that she had to stay in her bassinet, and we could only hold her during feedings.</p>
<p>That evening, the doctors were worried that she was &#8220;working too hard&#8221; to eat, and expending more calories than she could afford.</p>
<p>They checked her blood sugar and it was a low. After being fed some breast milk, it had not come up enough so they gave her some glucose water (also finger fed with the SNS) and it came right up, but they were now more concerned and started testing her blood sugar at the beginning of each feeding routine (three hours after the last meal).</p>
<p>This continued through the night, and in the morning, Shrike&#8217;s mother called to check in on us. I don&#8217;t remember her exact words, but she essentially told me to not be &#8220;so hung up about the breastfeeding&#8221; and that &#8220;it&#8217;s just important that she eats, and at least she&#8217;s getting the milk,&#8221; but &#8220;if it doesn&#8217;t work, it&#8217;s not the end of the world.&#8221;</p>
<p>I know that she was speaking out of concern for Peeper, and I&#8217;m sure that she genuinely thought that she was being reassuring and comforting to me about “not being able to breastfeed,” (which I’m sure she assumed was going to be the case) but the effect was the exact opposite.</p>
<p>What I heard was that I was putting Peeper’s health at risk by depriving her of the food she needed, in order to satisfy my own whims; that it really didn&#8217;t matter whether she breastfed, and I was being silly to be so upset about it; and that I should just stop this and do what was best for Peeper.</p>
<p>But I knew damn well that what was best for Peeper was to breastfeed, and I knew that to me, it would be the end of the world if she weren&#8217;t able to, and I&#8217;d be damned if I was going to give up on her – and myself &#8211; this soon.</p>
<p>All day Thursday, I asked for a visit from the lactation consultant, but she was tied up on the labor and delivery floor, so it was evening before she made it over, and she&#8217;d not been there very long when the pediatrician came in to talk to us.</p>
<p>At this point, Peeper had been having trouble keeping her temperature up, while laying under the bililights in just a diaper, so the heat in the room had been turned up to about eighty degrees. I was sitting on a chair in the corner of the room, right under the ceiling heat lamp, Peeper was in her bassinet, and Shrike was somewhere on the other side of the room. In the tiny room with us were the lactation consultant, the pediatrician, Shrike&#8217;s mother and sister, and one or two nurses.</p>
<p>I will forever think of this conversation as &#8220;The Nipple Intervention.&#8221;</p>
<p>The pediatrician started by saying that &#8220;I know that breastfeeding is important to you, and it is the best thing for Peeper, so we definitely want her to do it, but . . . .&#8221;</p>
<p>But.</p>
<p>Both breastfeeding and finger feeding were too much work for Peeper, and she still wasn&#8217;t keeping her blood sugar up like she should, and we had to get milk into her more quickly, so we were going to have to give her bottles.</p>
<p>I think I asked if there were any other options, but I was told that no, she must take bottles, or she was not going to be able to get enough food.</p>
<p>I probably express a concern about using artificial nipples, because the lactation consultant said that we could use Nuk nipples which &#8220;are much less likely to cause nipple confusion.&#8221;</p>
<p>I&#8217;m not at all certain, though, what I actually asked about or what concerns I expressed, because I did not feel as though I was in a position to do or say much of anything other than agreeing with the pediatrician&#8217;s plan.</p>
<p>What I believe I said was, &#8220;Of course, I want to do whatever she needs. It’s not ideal, because I was hoping to avoid bottles, but I have no problem with them if that&#8217;s what she needs at this point. If we can use the Nuks, that&#8217;s fine with me. But of course, we&#8217;ll do whatever you think is best for her.&#8221;</p>
<p>What I know I was feeling was that I was being completely ganged up on and intimidated and bullied into doing what the doctor wanted.</p>
<p>I felt very much like I was being told that it was time to stop my silliness and selfishness, and listen to the grown ups, and get serious about actually taking care of my child.</p>
<p>I felt like I was being judged by everyone in the room for my hesitance to agree to bottles before that point.</p>
<p>I felt like I had to agree, without any argument, in order to convince them all that I really did care about Peeper and I really did want her to be okay.</p>
<p>I felt like all of this was about them – the doctors, my in laws, even the lactation consultant – telling me what we were going to do.</p>
<p>And I felt like Shrike was neither being consulted by them, nor was I even allowed to consult with her about it, because she was on the opposite side of the room the whole time.</p>
<p>I also felt, very strongly, that this was not the right thing to do, for me or especially for Peeper.</p>
<p>I made myself be okay with it at the time, because I had no choice, but I knew there had to be another answer.</p>
<p>I knew there had to be other, better ways to get the milk in her without introducing artificial nipples.</p>
<p>I knew I hated everything about the idea of giving her bottles, and I was terrified that they were going to be the beginning of the end of any hope I had of her ever breastfeeding.</p>
<p>After the doctor left, Shrike and I went down the hall with the lactation consultant, and talked with her about it, away from the crowd, out of the heat, just the three of us. She made me feel somewhat better about the decision, but I still was very uncomfortable with it.</p>
<p>DoulaK stopped by that evening to visit, and we talked with her for a long time. She was very reassuring, but also suggested some other possible feeding options, which the lactation consultant dismissed as not being appropriate in our situation.</p>
<p>While DoulaK was there, Peeper nursed for quite a while &#8211; probably the best session we&#8217;d had since the first day.</p>
<p>Over the next day, Peeper&#8217;s blood sugar stabilized, and her weight continued to go up, and we were discharged on Saturday.</p>
<p>The bottles had done the trick, I suppose, in getting the milk into her more quickly and easily, but they&#8217;d also done their damage, and she was almost completely refusing the breast by that point.</p>
<p>For weeks, I pumped and Shrike bottle fed Peeper, and we slept in two and three hour bits in between.</p>
<p>My nipples got incredibly sore, and I was in constant pain, not only when I was pumping.</p>
<p>I&#8217;d started with pump flanges that were too small, and used too high a suction setting on the pump (because of a lack of training) and that started the damage, which just got progressively worse.</p>
<p>Feeding wasn&#8217;t Peeper&#8217;s only health concern. She was born with a congenital heart defect (two holes in her heart, which were surgically repaired when she was twenty weeks old) and she had some questionable results on her metabolic tests, so there were weekly trips to the cardiologist an hour away, and one train trip to a Children&#8217;s Hospital four hours away.</p>
<p>For every trip, we took the breast pump along, and I pumped in the hospital lactation room, and parking lots, and riding down the interstate.</p>
<p>When we were at home, I still offered the breast at almost every feeding, but it became harder and harder to deal with her refusal to latch.</p>
<p>It was impossible to not take it personally, to not feel like she was rejecting me.</p>
<p>The worst part was that not only would she not latch, but she would fight against it, and would wrap her tiny little hand around my very sore nipple and push it away, saying what sounded all the world like, &#8220;Uh-uh! Uh-uh!&#8221;</p>
<p>I don&#8217;t know how many times I handed her to Shrike for a bottle, crying, and asking, over and over, &#8220;Why won&#8217;t she do this? Why doesn&#8217;t she like me?&#8221;</p>
<p>I can&#8217;t even begin to count the number of times I talked to DoulaK on the phone during that time, and she always had a recommendation for something I could try to ease my nipple pain, or to encourage Peeper to latch, or just to help us to bond, in the absence of an actual breastfeeding relationship.</p>
<p>Most importantly, she always listened to my concerns and my feelings and validated them, she always encouraged me to keep trying and she always assured me that Peeper would eventually get it.</p>
<p>She reminded me that Peeper still wasn&#8217;t even supposed to be outside of me yet, so of course, she was having trouble. Many full term babies take a couple of weeks to learn to nurse well; I just had to be patient and give her time to mature.</p>
<p>She also told me, over and over, that she had faith in Peeper and that it might take a while, but that she knew she would be breastfeeding eventually.</p>
<p>Her confidence in our ability to work through this was invaluable at a time when I had none of my own.</p>
<p>I also can&#8217;t tell you how many hours I spent on the computer researching nipple confusion, and breast refusal, and nipple pain, and everything else I could find.</p>
<p>In my research, I found very little information on how to solve nipple confusion, only information about how to prevent it &#8211; warning after warning to avoid introducing artificial nipples.</p>
<p>This is when I learned that syringe feeding or cup feeding would have been viable options for us, had our doctors and our hospital been willing to do either.</p>
<p>Both techniques are used in NICUs with babies much younger, much smaller and much sicker than Peeper, and I am still very angry that neither was made available.</p>
<p>We were very lucky that Shrike was able to take a month off work when Peeper was born, because as hard as things were those first few weeks, at least she was there the whole time, doing all of the bottle feedings, and most of the diaper changes, and a lot more of the hands-on baby care than I was.</p>
<p>I felt at times like actually parenting Peeper was Shrike&#8217;s responsibility, and my job was to pump and hand them milk.</p>
<p>Shrike was incredibly supportive through it all, and never once suggested that I give up on trying to get Peeper to breastfeed.</p>
<p>In fact, there were many, many feedings when I just wanted to have Shrike give her the bottle and get it over with, but she encouraged me to &#8220;give her a try&#8221; first.</p>
<p>I know that, even though she usually turned me down, if I&#8217;d ever let myself get away from offering Peeper frequent opportunities to nurse, we&#8217;d have had no hope of getting her back to it.</p>
<p>And, as much as I was missing the opportunity to feed Peeper, and as much as I was not bonding with her, she and Shrike were able to bond in a way that would not have been possible if she had been breastfeeding from the beginning.</p>
<p>That, I suppose, was the silver lining in the very dark cloud that I was living in at the time.</p>
<p>It doesn’t make sense, but as jealous as I was of their relationship at the time, there was also nothing that made me happier than to see them together, and to see Shrike holding her, and talking to her and caring for her.</p>
<p>When Shrike returned to work, though, things got much more difficult for me. Now, for ten hours of the day, I had to do it all myself.</p>
<p>When I&#8217;d try to put Peeper down long enough to pump, she would cry. Then I could cry, telling her, &#8220;I am doing this for you!&#8221;</p>
<p>Several times, I pumped while holding the bottles to both breasts with one hand and elbow, as she lay on my lap, taking a bottle from my other hand.</p>
<p>&#8220;You know,&#8221; I&#8217;d tell her, &#8220;There&#8217;s really a much simpler way to do this. How about we cut just out the middle man, huh, Kiddo?&#8221;</p>
<p>I was using a Medela Pump In Style, and anyone who&#8217;s used one will tell you that it &#8220;talks.&#8221; The noises that it makes are incredibly voice-like and when you add in a dollop of hormones and a heaping helping of sleep deprivation, it becomes something of an auditory Rorschach test.</p>
<p>I&#8217;d heard the pump say all kinds of crazy things, from &#8220;Loser McCain, Loser McCain,&#8221; in the days following after the presidential election, to “We&#8217;re losing control, we&#8217;re losing control,&#8221; after failing for a third time to catch a urine sample for some metabolic testing that Peeper needed, but now, the bastard really turned on me.</p>
<p>On the first or second day that I was home alone with Peeper all day, I was pumping while she lay in her bassinet and we both cried, and the pump was saying, &#8220;It&#8217;s such a pain, it&#8217;s such a pain.&#8221;</p>
<p>Well, yes, I couldn&#8217;t argue with that.</p>
<p>Then it changed to, &#8220;It doesn&#8217;t pay, it doesn&#8217;t pay.&#8221;</p>
<p>And, for a moment, I started to believe it, and that is the closest that I ever came to giving up.</p>
<p>I knew I needed help to get past that, so I picked up the phone and called DoulaK, and told her, through my tears that, &#8220;We&#8217;re having really rough day, here. Do you have a minute?&#8221;</p>
<p>We talked for hours, and she told me that I sounded much like every mother of a newborn that she talked to.</p>
<p>Not necessarily a mother of a one-month old, mind you, but a newborn, because that&#8217;s what Peeper really was at that point.</p>
<p>She was just starting to &#8220;wake up&#8221; and realize that she was no longer a fetus but an actual baby.</p>
<p>She&#8217;d learned how to cry. She wanted to eat all the time. I was pumping as often as I could, and barely staying ahead of her.</p>
<p>I was exhausted, I was discouraged and I was devastated.</p>
<p>All my life, I’d looked forward to having a baby, and now that I had one, nothing was going the way that it should.</p>
<p>My baby was early, and she was tiny, and she had a hole in her heart, and she might have a metabolic disorder (she doesn’t) and I couldn’t even feed her.</p>
<p>For four weeks, I&#8217;d been holding on to the lactation consultant’s prediction that Peeper would pull it together and learn to nurse by her due date. Now that date had come and gone and she was no closer than she was at a week old.</p>
<p>Yes, she&#8217;d had a few days here and there when she&#8217;d suddenly decided to latch, and a couple of times she&#8217;d even nursed several times in a day.</p>
<p>But each time I thought she&#8217;d turned a corner, the next day, we&#8217;d be right back where we&#8217;d started.</p>
<p>That was almost worse than if she&#8217;d never latched, because I would get my hopes up repeatedly, only to be disappointed time and again.</p>
<p>But, I did have that glimmer of hope that she was not completely refusing the breast, she did still know how to latch, and she was still willing to do it on occasion.</p>
<p>In the hospital, I&#8217;d been given a couple of different nipple shields, but Peeper wasn&#8217;t able to latch with either of them, because they were so much bigger than her mouth was at the time.</p>
<p>LadyKay had told me that a nipple shield had done the trick in getting her son over his nipple confusion (after having been given bottles in the hospital, when he was jaundiced), and suggested I might think about giving one a try.</p>
<p>I was hesitant, though, because it hadn’t worked before, and I also knew that they can often cause more problems than they solve, so DoulaK had been hesitant to recommend that I use one just yet.</p>
<p>This day, though, she suggested that I consider it.</p>
<p>The main concerns with a nipple shield are nipple confusion &#8211; a moot point, since we were already there, and nursing with a shield was better than no nursing at all, and that the nipple doesn&#8217;t receive as much stimulation as it would if the baby were latched directly, so it can cause a reduction in milk supply. However, my supply was well-established at this point, and I would still be pumping, so I wasn&#8217;t too concerned about that</p>
<p>I thought about it for a few days, and when Peeper was just over five weeks old, I tried the nipple shield.</p>
<p>She latched immediately.</p>
<p>And nursed.</p>
<p>I was very careful not to get my hopes up, because she&#8217;d tricked me before, but I kept offering the breast, with the shield, and she kept taking it.</p>
<p>I believe it was a Wednesday that we first used the shield, and from Thursday afternoon through the day Friday, she did nothing but nurse, nap, poop, and nurse the other side.</p>
<p>For about thirty-six hours straight.</p>
<p>Her tummy was full enough that she didn’t fuss for a bottle, and my breasts were empty enough that I felt no need to pump.</p>
<p><img class="alignnone size-medium wp-image-1653" title="bsg01" src="http://ibreastfed.com/wp-content/uploads/2009/10/bsg01-199x300.jpg" alt="bsg01" width="199" height="300" />I called DoulaK on Friday and said, &#8220;You told me to call you with some good new for a change, so I am!&#8221;</p>
<p>This time, we really had turned the corner.</p>
<p>We gave her a couple of supplemental bottles over the weekend, mostly because I was freaking out each morning that &#8220;She&#8217;s not eaten in five hours! If she won&#8217;t wake up and nurse, make her take a bottle!&#8221;</p>
<p>Of course she was sleeping longer, she&#8217;d been cluster feeding like crazy, and if I&#8217;d waited thirty minutes or an hour, she&#8217;d have been awake and asking to nurse again, I&#8217;m sure.</p>
<p>On Sunday, Shrike&#8217;s parents watched her for an hour or so while we went out to get a Christmas tree, and gave her a bottle while we were gone.</p>
<p>She turned six weeks old the next day, and (with the exception of the day after her surgery, before we were allowed to pick her up) she&#8217;s not had a bottle since.</p>
<p>Within two or three weeks, I had weaned her off of the nipple shield, and we were home free.</p>
<p>It&#8217;s hard to believe, as I sit here typing, while Peeper naps and nurses in my lap, that this is the same kid who refused to latch for six weeks.</p>
<p>Now, she refuses to unlatch!</p>
<p>She is still small for her age, but all her doctors have been thrilled with her growth &#8211; especially considering her heart defect, which often causes babies to grow slowly.</p>
<p>Her growth has been a huge thing for me.</p>
<p>Especially in the early days, I was so worried that if Peeper wasn&#8217;t growing as fast as her doctors wanted her to on breast milk, they would insist that we give her formula.</p>
<p>Even now, every single time I put her on a scale, I hold my breath, as I wait for its verdict, as I wait to see whether it will say that I am doing my job, that I am a fit mother for her.</p>
<p>In those first days and weeks, all we were asking of her &#8211; all they were asking of me &#8211; was that she eat and that she grow.</p>
<p>If she couldn&#8217;t do that &#8211; I couldn&#8217;t do that &#8211; I felt like I would be failing her.</p>
<p>As it turns out, she could. And I could. And we have.</p>
<p>She is almost a year old, and she is thriving.</p>
<p>With the exception of about two ounces of formula in her first eight days (the 10 cc I mentioned above, and a couple of times that I was away from her briefly and she ran out of the pumped milk available) she was exclusively breastfed until she was six months, six days old.</p>
<p>Now almost a year old, she continues to breastfeed on demand. We started offering her finger foods at just over six months, taking a baby-led approach to the introduction of solids. She&#8217;s loving her &#8220;chewin&#8217; food,&#8221; but is still nursing just as much.</p>
<p>I know that it&#8217;s only a matter of time before she&#8217;s getting enough nutrition from the solids that she starts cutting back on her nursing, and I&#8217;m a little sad about that, but I’m also proud of what a “big girl” she&#8217;s getting to be.</p>
<p>Of course, our nursing relationship will be changing significantly over the next several months, as she eats more and more solid foods, and will continue to evolve as she matures, but I&#8217;m looking forward to breastfeed as long as Peeper wants and needs to.</p>
<p>Peeper and I got off to an incredibly rough start with nursing. We were dealt some bad cards, and, I now realize, we were given some bad advice from the pediatricians and some other people at the hospital.</p>
<p>I also now realize that we encountered some people who claimed to be, or perhaps even truly thought they were being supportive of our efforts, but were, in reality, sabotaging us.</p>
<p>I am still very angry about that, and am still very, for lack of a better word, traumatized, by the whole situation, especially the &#8220;nipple intervention.&#8221;</p>
<p>But, more importantly, we also had some very, very good advice and support and encouragement all along the way.</p>
<p>We got great technical advice from DoulaK and my other La Leche League leader, my sister, and one of my midwives, and incredible emotional support from all of those people, as well as Shrike, of course, and my mother, our therapist, and many friends.</p>
<p>Without their help, we never would have made it through those first six weeks, and I would have been absolutely devastated if Peeper had not learned to breastfeed.</p>
<p>I went into it probably knowing a lot more about breastfeeding than most people who&#8217;ve never done it, I was absolutely committed to making it work, and I had a great support system.</p>
<p>And I still doubted, everyday, whether we would be able to do it.</p>
<p>I totally understand, now, why women give up on breastfeeding, especially if they are not lucky enough to have that kind of support.</p>
<p>But there is no excuse for them not having that support. There&#8217;s no excuse for hospitals pushing formula when a baby doesn&#8217;t need it. There&#8217;s no excuse for them not offering alternative feeding methods to avoid the introduction of artificial nipples and there&#8217;s no excuse for women not being told where they can turn for help.</p>
<p>Shrike tells me that Peeper wouldn&#8217;t be nursing today if I weren&#8217;t so damn hard-headed, and I like to think she’s right.</p>
<p><img class="alignnone size-medium wp-image-1654" title="bsg02" src="http://ibreastfed.com/wp-content/uploads/2009/10/bsg02-200x300.jpg" alt="bsg02" width="200" height="300" />I&#8217;ve done a lot of things in my forty-one years, some of which I&#8217;m pretty proud of, but there is nothing that I&#8217;m prouder of than sticking it out and having enough faith in Peeper, and in myself, to give her the time to mature and trying one thing after another until we finally hit on the answer, and doing what it took to get us through those first six weeks to bring us to the point where we are today.</p>
<p>As awful as those early weeks were, and as hard as some of the other things we&#8217;ve been through with Peeper have been, from worries during my pregnancy about a possible neural tube defect, to her open-heart surgery, I think that I am a stronger person for it, and I am a better mother for it, and Peeper, Shrike and I are a stronger family for it.</p>
<p>I spend a good portion of my day (and night) with Peeper at my breast, and sometimes I get tired, and sometimes I need a break, but I never, ever take it for granted.</p>
<p>And I never will.</p>
<p><em>Visit Whozat at her blog </em><a href="http://whozatshrike.blogspot.com/" target="_blank"><em>Lucy &amp; Ethel Have a Baby: The Adventures of Shrike &amp; Whozat (&amp; Peeper!)</em></a></p>
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		<title>Nursing my child through a medical condition &#8211; Shara&#8217;s story</title>
		<link>http://ibreastfed.com/2009/10/nursing-my-child-through-a-medical-condition-sharas-story</link>
		<comments>http://ibreastfed.com/2009/10/nursing-my-child-through-a-medical-condition-sharas-story#comments</comments>
		<pubDate>Mon, 05 Oct 2009 23:31:56 +0000</pubDate>
		<dc:creator>mary</dc:creator>
				<category><![CDATA[Baby medical condition]]></category>
		<category><![CDATA[Baby surgery]]></category>

		<guid isPermaLink="false">http://ibreastfed.com/?p=1640</guid>
		<description><![CDATA[My son was born ten years ago with numerous medical complications to his right eye. The eye had to be removed ten days following his first birthday. It was certainly not easy making the commitment to nurse that year. A number of times I wanted to give up. With the pain he was in, he [...]]]></description>
			<content:encoded><![CDATA[<p>My son was born ten years ago with numerous medical complications to his right eye. The eye had to be removed ten days following his first birthday. It was certainly not easy making the commitment to nurse that year. A number of times I wanted to give up. With the pain he was in, he wanted to nurse every hour or so for those first 12 months. I was exhausted and mentally drained. He barely slept much because the pain from his eye caused severe headaches, etc. The nursing and bonding gave him comfort and each time I discussed it with the doctor he said, &#8220;Don&#8217;t give up yet! He needs you right now. This is all he has, making him feel safe and comforted!&#8221; So I pushed through &#8211; for 16 months. At that point, my son walked over the fridge and hit the door and yelled out &#8220;Milk!&#8221; I figured &#8211; if he could outright ask for milk, it was time to stop nursing :-) I have NEVER regretted pushing through that year. Nursing my son before and after all 3 surgeries, offering him that closeness and bonding&#8230;not to mention the nutrients. Since then I have nursed two more children.</p>
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