Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Darla, So sorry to hear that you are continuing to have problems with Zipporah. I have been in that postion several times where you know things are not right but you can't find the help you need to solve your problems. Hopefully you will find that your problems resolve quickly. I remember when my twins were born and I started breastfeeding both of them. That lasted two weeks and then I started only breastfeeding the one who was having the most problems with reflux and gas. That lasted another 4 weeks and then when they told me all the foods to avoid I ended up giving up on breastfeeding him entirely. I was also a little tired to say the least. He also had severe reflux but was not a spitter-upper but had very bad abdominal pains. He went on zantac at 6 weeks of age and also on bethanechol. He went through 5 different formulas until we found one he could tolerate the best. Fortunately he was able to be off of meds by 18 months of age. Whenever he complains of a stomachache now I do worry a little more because of his history. Lucas who is totally tube fed did not get treated for reflux until he was about 3 years of age. Doesn't make sense to me but that is how it worked. Hopefully Zipporah will be able to work this out on her own. Otherwise you know you need to be persistent. I know there is that fine line between tolerance and knowing that something must be done. Hang in there. I will be saying an extra prayer that all will go well. Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Hi Darla: I know you probably won't want to hear this; but.... may be you should consider giving up the nursing, may be pumping only and did you find any thing out about the Habermann bottle? I guess I can't say enough about it because Leah did have low tone in the beginning; but it wasn't caught. And she had a partial cleft palate and couldn't latch on to my breast nipple to nurse. So that is why we went with the Habermann. I seemed to have been feeding Leah every two hours. If she fussed just a little bit I got out the bottle. So may be even though she wasn't really hungary she would take a few ounces every couple of hours. I would put my breast milk in the freezer and thaw it out as needed. And if you are stressed out that could be another reason why you aren't producing more milk. It's your body telling you some thing. I would say enough is enough just for your peace of mind. You are doing so much for your ill children and your well children and you've been down this route before with Asenath. So you have knowledge of this. Some times because they aren't in your home day after day they don't know what you are observing. As my ped always says; "You are the mother and know best" and he usually goes with what I am saying some thing isn't right here. I know you have other people guiding you; but it seems they aren't in your corner right now or stepping up to the plate so to say. Can you contact Dr. Whiteman's nurse and speak to her and voice your concerns? Even though Porrah is in the upper weight range; you are correct in saying you don't want her to lose weight. Her body is use to that weight and even though she may have a little extra weight doesn't mean losing the weight will do her any good. And if I remember correctly and I've seen this with Leah; mito kids don't always have that hungar feeling. So that is why we try to give Leah several feedings throughout the day of food because she can't tell me verbally "Mom I'm hungary" like her brothers. And she has pushed food away even after alittle bit during dinner. So then before bedtime we will give her cereal and she usually chows down on that. So even though it may mean stopping more often in what you are doing; you may want to try and give Porrah a bottle more often; even if it is only 1 1/2 oz she is getting she will get what she needs throughout the day. Another thought; can Porrah hold a bottle on her own laying down? That would be a little more independent for you in that when she is in a bouncy seat or such you can hand her a bottle (with your milk in it) and see if she could drink from that. I just checked with my husband and Leah was around 5 to 6 months old before she could hold her own bottle and it was a small one at that. The nice thing about the Habermann is the milk doesn't need to be sucked out of the bottle and also the flow is more controlled than a bottle with a larger nipple. The original Habermann bottle is very small in diameter and only holds a couple of ounces. But we slowly graduated up to a larger bottle. And we found that there are "regular" bottles that the nipple will fit on to. Sorry to go on; but it sounds like you are too stressed out and you shouldn't let it be this way. Please talk to some one about the Habermann or see if you can get one from your feeding specialist to at least try. You can even control how much milk she gets by squeezing gently and they should show you how to do that. I think you will be more relieved if Porrah can take a bottle to get all that she wants and will find that you are both happier in the long run. Because if it is too tiring for her to nurse just like when we are too tired to eat, you just don't do it. So that could be what is going on; Porrah is tired from nursing, her stomach says geeze I've got some food in my tummy why do I need more; and Porrah decideds not to nurse any more because (a) she's pooped out from trying to use her muscles; it's a workout for her and ( her stomach has some food in to relieve any hungar pang there was. And another question for your doctor would be could you mix polycose which would add extra calories to the milk be added or is her digestive system not ready for some thing like that yet? Please let us know what you came up with. I've been thinking about you and wonder "How does she do it?" Good luck Darla and be proactive; remember these are your children and you've been down the road with Asenath and have the experience of what has happened in the past. Your ped will get it. Nerenhausen mom to Leah Darla Klein wrote: I am continuing to have more problems feeding Zipporrah and it is beginning to stress me out. Zipporrah has been nursing less and less and of course is very cranky and hungry. Of course, when she nurses less then I produce less breast milk and so I have been pumping after each feeding and making sure to pump at least every 2 1/2-3 hrs. This is very tiring and I am always worried that as soon as I pump she will want to nurse again. When this has occurred I try to use a bottle that has a larger whole and squirting some into her mouth. She likes this for about 1 oz. and then refuses more. My pedaitrician said that she probably nurses enough to get rid of the hunger craving and then stops due to muscle fatigue in her mouth. But then she says to keep doing what I am doing as I am doing ok with her. I feel like she is getting worse the older she gets, but I know how depleted Asenath got so I have been wo! rking "overtime" to make sure Porrah keeps gaining weight. I know she lost a pound this past week but she is still on the upper level of weight gain for her age so this gives her pediatrician a false view of how it's going. When I do not pump regularly I don't make hardly any milk anymore and causes problems when she actually wants to nurse fully on her own. I know that if she was bottle fed only, she would be totally malnourished. I just don't want to go through what we went through with Asenath concerning food. Asenath could nurse fine at least so she always had something to fall back on. Even when Porrah puts out little urine, has strong urine odor, nurses little, and is cranky, the doc still says I am doing great keep it up. HOW DO I KNOW WHEN ENOUGH IS ENOUGH? I must admit I am tired and stressed which doesn't help the milk supply issue. Why do my docs want me to wait till my kids are do bad! before helping them, knowing they are prone to strokes? Wouldn' t it be better to be proactive in these issues-at least IV use when indicated? Help! Any suggestions? Sorry I am going on, I have been thinking about writing this note for several days... Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Hi Darla: I know you probably won't want to hear this; but.... may be you should consider giving up the nursing, may be pumping only and did you find any thing out about the Habermann bottle? I guess I can't say enough about it because Leah did have low tone in the beginning; but it wasn't caught. And she had a partial cleft palate and couldn't latch on to my breast nipple to nurse. So that is why we went with the Habermann. I seemed to have been feeding Leah every two hours. If she fussed just a little bit I got out the bottle. So may be even though she wasn't really hungary she would take a few ounces every couple of hours. I would put my breast milk in the freezer and thaw it out as needed. And if you are stressed out that could be another reason why you aren't producing more milk. It's your body telling you some thing. I would say enough is enough just for your peace of mind. You are doing so much for your ill children and your well children and you've been down this route before with Asenath. So you have knowledge of this. Some times because they aren't in your home day after day they don't know what you are observing. As my ped always says; "You are the mother and know best" and he usually goes with what I am saying some thing isn't right here. I know you have other people guiding you; but it seems they aren't in your corner right now or stepping up to the plate so to say. Can you contact Dr. Whiteman's nurse and speak to her and voice your concerns? Even though Porrah is in the upper weight range; you are correct in saying you don't want her to lose weight. Her body is use to that weight and even though she may have a little extra weight doesn't mean losing the weight will do her any good. And if I remember correctly and I've seen this with Leah; mito kids don't always have that hungar feeling. So that is why we try to give Leah several feedings throughout the day of food because she can't tell me verbally "Mom I'm hungary" like her brothers. And she has pushed food away even after alittle bit during dinner. So then before bedtime we will give her cereal and she usually chows down on that. So even though it may mean stopping more often in what you are doing; you may want to try and give Porrah a bottle more often; even if it is only 1 1/2 oz she is getting she will get what she needs throughout the day. Another thought; can Porrah hold a bottle on her own laying down? That would be a little more independent for you in that when she is in a bouncy seat or such you can hand her a bottle (with your milk in it) and see if she could drink from that. I just checked with my husband and Leah was around 5 to 6 months old before she could hold her own bottle and it was a small one at that. The nice thing about the Habermann is the milk doesn't need to be sucked out of the bottle and also the flow is more controlled than a bottle with a larger nipple. The original Habermann bottle is very small in diameter and only holds a couple of ounces. But we slowly graduated up to a larger bottle. And we found that there are "regular" bottles that the nipple will fit on to. Sorry to go on; but it sounds like you are too stressed out and you shouldn't let it be this way. Please talk to some one about the Habermann or see if you can get one from your feeding specialist to at least try. You can even control how much milk she gets by squeezing gently and they should show you how to do that. I think you will be more relieved if Porrah can take a bottle to get all that she wants and will find that you are both happier in the long run. Because if it is too tiring for her to nurse just like when we are too tired to eat, you just don't do it. So that could be what is going on; Porrah is tired from nursing, her stomach says geeze I've got some food in my tummy why do I need more; and Porrah decideds not to nurse any more because (a) she's pooped out from trying to use her muscles; it's a workout for her and ( her stomach has some food in to relieve any hungar pang there was. And another question for your doctor would be could you mix polycose which would add extra calories to the milk be added or is her digestive system not ready for some thing like that yet? Please let us know what you came up with. I've been thinking about you and wonder "How does she do it?" Good luck Darla and be proactive; remember these are your children and you've been down the road with Asenath and have the experience of what has happened in the past. Your ped will get it. Nerenhausen mom to Leah Darla Klein wrote: I am continuing to have more problems feeding Zipporrah and it is beginning to stress me out. Zipporrah has been nursing less and less and of course is very cranky and hungry. Of course, when she nurses less then I produce less breast milk and so I have been pumping after each feeding and making sure to pump at least every 2 1/2-3 hrs. This is very tiring and I am always worried that as soon as I pump she will want to nurse again. When this has occurred I try to use a bottle that has a larger whole and squirting some into her mouth. She likes this for about 1 oz. and then refuses more. My pedaitrician said that she probably nurses enough to get rid of the hunger craving and then stops due to muscle fatigue in her mouth. But then she says to keep doing what I am doing as I am doing ok with her. I feel like she is getting worse the older she gets, but I know how depleted Asenath got so I have been wo! rking "overtime" to make sure Porrah keeps gaining weight. I know she lost a pound this past week but she is still on the upper level of weight gain for her age so this gives her pediatrician a false view of how it's going. When I do not pump regularly I don't make hardly any milk anymore and causes problems when she actually wants to nurse fully on her own. I know that if she was bottle fed only, she would be totally malnourished. I just don't want to go through what we went through with Asenath concerning food. Asenath could nurse fine at least so she always had something to fall back on. Even when Porrah puts out little urine, has strong urine odor, nurses little, and is cranky, the doc still says I am doing great keep it up. HOW DO I KNOW WHEN ENOUGH IS ENOUGH? I must admit I am tired and stressed which doesn't help the milk supply issue. Why do my docs want me to wait till my kids are do bad! before helping them, knowing they are prone to strokes? Wouldn' t it be better to be proactive in these issues-at least IV use when indicated? Help! Any suggestions? Sorry I am going on, I have been thinking about writing this note for several days... Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Hi Darla: I know you probably won't want to hear this; but.... may be you should consider giving up the nursing, may be pumping only and did you find any thing out about the Habermann bottle? I guess I can't say enough about it because Leah did have low tone in the beginning; but it wasn't caught. And she had a partial cleft palate and couldn't latch on to my breast nipple to nurse. So that is why we went with the Habermann. I seemed to have been feeding Leah every two hours. If she fussed just a little bit I got out the bottle. So may be even though she wasn't really hungary she would take a few ounces every couple of hours. I would put my breast milk in the freezer and thaw it out as needed. And if you are stressed out that could be another reason why you aren't producing more milk. It's your body telling you some thing. I would say enough is enough just for your peace of mind. You are doing so much for your ill children and your well children and you've been down this route before with Asenath. So you have knowledge of this. Some times because they aren't in your home day after day they don't know what you are observing. As my ped always says; "You are the mother and know best" and he usually goes with what I am saying some thing isn't right here. I know you have other people guiding you; but it seems they aren't in your corner right now or stepping up to the plate so to say. Can you contact Dr. Whiteman's nurse and speak to her and voice your concerns? Even though Porrah is in the upper weight range; you are correct in saying you don't want her to lose weight. Her body is use to that weight and even though she may have a little extra weight doesn't mean losing the weight will do her any good. And if I remember correctly and I've seen this with Leah; mito kids don't always have that hungar feeling. So that is why we try to give Leah several feedings throughout the day of food because she can't tell me verbally "Mom I'm hungary" like her brothers. And she has pushed food away even after alittle bit during dinner. So then before bedtime we will give her cereal and she usually chows down on that. So even though it may mean stopping more often in what you are doing; you may want to try and give Porrah a bottle more often; even if it is only 1 1/2 oz she is getting she will get what she needs throughout the day. Another thought; can Porrah hold a bottle on her own laying down? That would be a little more independent for you in that when she is in a bouncy seat or such you can hand her a bottle (with your milk in it) and see if she could drink from that. I just checked with my husband and Leah was around 5 to 6 months old before she could hold her own bottle and it was a small one at that. The nice thing about the Habermann is the milk doesn't need to be sucked out of the bottle and also the flow is more controlled than a bottle with a larger nipple. The original Habermann bottle is very small in diameter and only holds a couple of ounces. But we slowly graduated up to a larger bottle. And we found that there are "regular" bottles that the nipple will fit on to. Sorry to go on; but it sounds like you are too stressed out and you shouldn't let it be this way. Please talk to some one about the Habermann or see if you can get one from your feeding specialist to at least try. You can even control how much milk she gets by squeezing gently and they should show you how to do that. I think you will be more relieved if Porrah can take a bottle to get all that she wants and will find that you are both happier in the long run. Because if it is too tiring for her to nurse just like when we are too tired to eat, you just don't do it. So that could be what is going on; Porrah is tired from nursing, her stomach says geeze I've got some food in my tummy why do I need more; and Porrah decideds not to nurse any more because (a) she's pooped out from trying to use her muscles; it's a workout for her and ( her stomach has some food in to relieve any hungar pang there was. And another question for your doctor would be could you mix polycose which would add extra calories to the milk be added or is her digestive system not ready for some thing like that yet? Please let us know what you came up with. I've been thinking about you and wonder "How does she do it?" Good luck Darla and be proactive; remember these are your children and you've been down the road with Asenath and have the experience of what has happened in the past. Your ped will get it. Nerenhausen mom to Leah Darla Klein wrote: I am continuing to have more problems feeding Zipporrah and it is beginning to stress me out. Zipporrah has been nursing less and less and of course is very cranky and hungry. Of course, when she nurses less then I produce less breast milk and so I have been pumping after each feeding and making sure to pump at least every 2 1/2-3 hrs. This is very tiring and I am always worried that as soon as I pump she will want to nurse again. When this has occurred I try to use a bottle that has a larger whole and squirting some into her mouth. She likes this for about 1 oz. and then refuses more. My pedaitrician said that she probably nurses enough to get rid of the hunger craving and then stops due to muscle fatigue in her mouth. But then she says to keep doing what I am doing as I am doing ok with her. I feel like she is getting worse the older she gets, but I know how depleted Asenath got so I have been wo! rking "overtime" to make sure Porrah keeps gaining weight. I know she lost a pound this past week but she is still on the upper level of weight gain for her age so this gives her pediatrician a false view of how it's going. When I do not pump regularly I don't make hardly any milk anymore and causes problems when she actually wants to nurse fully on her own. I know that if she was bottle fed only, she would be totally malnourished. I just don't want to go through what we went through with Asenath concerning food. Asenath could nurse fine at least so she always had something to fall back on. Even when Porrah puts out little urine, has strong urine odor, nurses little, and is cranky, the doc still says I am doing great keep it up. HOW DO I KNOW WHEN ENOUGH IS ENOUGH? I must admit I am tired and stressed which doesn't help the milk supply issue. Why do my docs want me to wait till my kids are do bad! before helping them, knowing they are prone to strokes? Wouldn' t it be better to be proactive in these issues-at least IV use when indicated? Help! Any suggestions? Sorry I am going on, I have been thinking about writing this note for several days... Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 I would try a SNS, you put the breast milk in it and this tube goes down to your nipple and the baby sucks, then they get both milk from the breast and the tube, I use this with Mirella when she has to nurse, (otherwise i pump and use a bottle) as I know she gets very little out of the breast, also you might try avents sippy cup, you can put the breast milk in it too, as young as 3 months can use the cup. Also I haven't used these but heard they might work too: Haberman Feeder and Hazelbaker Finger Feeder , them and the SNS can be found on the site: BreastFeeding Basics, Practical Solutions for Breast Feeding Problems or http://breastfeeding-basics.com/ I was able to get the SNS through our hospital's lactation dept, they have been most helpful in me being able to still give Mirella my milk even with her sucking issues, how old is your baby, Mirella is almost 4 months. Also what type of pump are u using, to be most effective for regular pumping you need a really good pump, we rent ours through a medical supply company. I HTH. I know how hard it is when the baby can't nurse, I have cried many tears because I can't, and I worry so about her health... J, Mom to 15, mito unknown, Mirella, 3 months, status unknown (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.