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  #1  
January 20th, 2011, 01:00 PM
daysfancarlymanning's Avatar Super Mommy
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I had my 5th child, Carly, 3 weeks ago tomorrow. She was born at 36w1d and within a few mins had a body temp of 92 and sugar issues. These all resolved within 3 hours but she was admitted to the nicu and put on antibiotics for 48 hrs before being released with me to go home. No infection was found. She was eating about 1 oz in the nicu. I am bfing but pumping and bottle feeding her. She was 6 lbs 5.4 oz at birth. She is now 6 lbs 4.2 oz. Her weight is in the 3rd percentile and the ped is very concerned why she does not eat. She does not wake to eat often either. When she does eat it's between 3/4 to 1.5 oz she takes. She eats every 5+ hrs. During the night she has consistently slept from 7:30-2 or 4 am before waking to eat. Ped is saying she is almost ftt and blaming me, saying I am not doing an adequate job of feeding her and getting the calories into her. She said there is nothing wrong here except that I am just not being a good enough mommy. Not in those exact words but she did say that I am not doing a good enough job getting her to eat. That is absolutely untrue and I am so upset. I have 4 other kids, including a 1 yr old but I am constantly holding or trying to feed this baby and I feel like a failure. She won't even entertain other causes as to why dd is not eating. Just it's me with the feeds. She saw me feeding her and in 20 mins she took 3/4 oz and fell asleep. Then she chastises me for not doing a good enough job keeping her awake. She weighed her, counted the 3/4 oz she took and said ok she's fine. She is NOT fine! She has not pooped in 3 days now. Ped says it's cuz she's using everything she's taking in and has nothing else left. Her pee diapers have decreased, yet ped said she is not dehydrated which I do not understand. We do not want to hospitalize dd but really how much longer does this need to go on before we get answers? I think and ped has said I am stressed being the single mom to 5 kids and how it must be so hard and overwhelming and I don't have much support. I am not overwhelmed or stressed to the point of ignoring or mishandling my baby. Just the every day stressors dealing with kids. I do not understand her reasoning with that but it is clear she thinks carly's issues are due to me and I am not ok with that. I have an appt tomorrow to just go in and talk to her and see if we can come to some common ground and understanding. But when I asked for the conference she said ok but i'm bringing in another dr. Fine. I'm not looking to accuse or sue or anything. I just want to understand and help carly best I can. I do love my ped. Been with her for 5 years, since my twins were 6 months and oldest dd was 3. But I do not understand why dd is not gaining weight, losing 2/10's of an oz then gaining, then losing like this and not eating?
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  #2  
January 20th, 2011, 02:06 PM
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Hi and welcome It sounds like she is a lazy eater, and where she is a 36 weeker, she is a late preemie, and this is very common. I am the mom of 4 preemies myself, born at 35 weeks, 35 weeks, 33 weeks, and 32 weeks. Feeding can be so frustrating, and 36 weekers are often overlooked as preemies. They are often sleepy and do not eat well. Your DD reminds me a lot of my second born, a 35 weeker who weighed 6 lbs 8 ozs at birth, and the only of my 4 kids who did not spend time in the NICU. By the time he was 5 days old he had lost to 5 lbs 8 ozs and our ped wanted to admit him to the NICU until he learned to feed better. He was a lazy eater due to his prematurity.

You are not a bad mom at all and you are not a failure. It is common and normal for breastfed babies not to poop for 3 days, even up to a week or more. This is NORMAL, so do not stress about it. We learned some good tips when teaching our preemies to feed. Dont undress them or use a cold washcloth to wake them; this forces them to try to warm themselves up, which in turn burns precious calories. wake her as best as you can with simple stimulation. Change her diaper, rub her back, and talk to her. Offer her the bottle, and when she stops sucking for more than a few seconds gently rub under her chin with a free finger on the same hand you are holding the bottle with. This will stimulate the suck-swallow-breath reflex. Also, turning the nipple in her mouth, or gently pulling it out slightly will help stimulate the same reflex. She should be taking about 60 MLs (2 ozs) every 3 hours. If she does not wake on her own after 3 hours, then wake her to feed. If she wakes more often, that is great, feed her.

When I brought my last baby home from the NICU he needed to be taking a minimum of 30 MLs (1 oz) every 3 hours before they would discharge him. He was 3 lbs 10 ozs when he came home, so I can see that 1 oz ever 3 hours for a 6+ pound baby is not quite enough.

Once her feeds increase she will outgrow this sleepy feeder phase and do much better, it really is a preemie thing. Dont let the doctor brow beat you because it is not your fault.
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  #3  
January 20th, 2011, 08:25 PM
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I agree. Also anytime she is taking a bottle make sure you sort of squeeze her cheeks a little. I tried to find a video but couldn't. With the hand you hold her bottle in, have her in a sitting position rather than snuggling and hold up her chin and cheeks. You have to sort of hold the bottle in that part of your hand between your thumb and pointer finger and the palm of your hand holds up her chin and your thumb and a finger hold her cheeks. This makes it so her cheeks won't get tired from sucking as easily. I also agree that she needs to be woken up to try to feed her. Until she will eat and get the food in her she will stay in the lazy feeder phase. It is tough and trialing but she will learn. Also don't let the ped beat up on you. Talk more to the other doc at the consult and explain your concerns. See if they have any ideas to get more food into her. Obviously not a first choice but if she needs it she can be admitted with a feeding tube until she has eaten enough that she has energy to wake up and eat. If she is too sleepy to eat and continues to lose weight to the point that she isn't well there are things that will help her get over the hump so don't beat yourself up. You are doing what is best for your daughter and that is pushing to get her what she needs. ((((HUGS)))) I really hope and pray that she starts gaining for you soon. It seems like the worrying is harder on us than it should be because doctors just don't listen sometimes...

Have you been on the moms of preemies board yet? They may also have some more tips for you on how to get her to eat even when she doesn't want to...
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  #4  
January 21st, 2011, 05:30 AM
daysfancarlymanning's Avatar Super Mommy
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Thank you ladies. We are going into the ped this morning and I am talking to her and bringing all sorts of information and an entire list of questions. My ped said this wasn't a normal preemie thing but maybe she just needs time. She wasn't even due until jan 27. It isn't even Jan 27 yet. She did eat a bit more then usual at her feeds yesterday, which I managed to get in her every 4 hrs instead of 5 or 6. She ate between 1-2 oz, depending on the time. Still my ped says this isn't nearly enough. She should either eat 2 oz every 2 hrs, 3 every 3 or 4 every 4. She is 3 weeks old today. Is that normal? She's averaging 8-10 oz total per day, give or take a little. This is bm too at this point. She has not pooped in 4 days now but ped says that's normal cuz her body is using everything it stores.
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  #5  
January 21st, 2011, 06:48 AM
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The rule of thumb is 2.5 ozs per pound every 24 hours. So, that means she should be taking about 16 ounces every 24 hours. She is only getting half of what she needs to be for proper growth. It is very very common in later preemies. I suggest you look for another doctor. You really need to be comfortable with the doctor who is giving your baby the care they need. You need to be able to trust them and be able to turn to them when you need them, and not feel like they will look down on you or judge you.

Good luck at the appointment today, let us know how it goes
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  #6  
January 21st, 2011, 06:34 PM
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thank you. I really need advice now. They've admitted carly to the hospital. She gained from 6.4.2 to 6.5.0 but they said it didn't matter. They were adament about avoiding the hospital yet today did a full 180 and said admit her. If I refused they said they'd call cps. Basically they think I'm causing her eating problems and not feeding her properly. They gave me a note to give the drs saying if mother doesn't start feeding more often will call cps. I was astounded adn very upset to say the least. I have 4 other childrenand have been with this pediatrician for 4.5 years. Taken my kids in for everything and cooperated going back sometimes twice for carly's weight gain issues. So HOW am I neglecting her and not feeding her?Since we've been in the hospital they treat me like I'm a monster. they clean cathed her and did blood tests. We're awaiting the blood cultures. So far all's normal, which is great. But the darn er doc told the nurse when I feed carly I need to be watched. WTH! She ate 2 oz. Then 3 hrs later I gave her another 2 oz. Went to the cafeteria to get a bite to eat, came back and the frickin nurse goes she acted like she was starving so I gave her 1.5 more oz and she vomitted it all up. she was choking through her nos. DUH! It was too much. The nurse said sh probably just hadn't burped enough. I am beside myself here and feel like I have no rights where my child is concerned ad that I'd better tread carefully. They REFUSE to believe it's a preemie issue at al. It's blame the mother. What do I do? I'm afraid they will take my child. Theypresume you guilty and then innoncent later on after they've ruined your life.
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  #7  
January 22nd, 2011, 06:46 AM
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Does you hospital have a social services program or a chaplain? Is it a pediatric hospital or a general hospital with a pediatric ward? If it is a general hospital with a ped ward I would suggest a transfer to a pediatric hospital. A pediatric hospital should understand that she was preterm...not premature, but preterm babies OFTEN have lazy attitudes that cross over into feeding. I can't believe the ped. I would definitely find a new one. Have you been admitted to a room yet? If so I would really try to get in touch with a chaplain, social services person, or child life employee if the hospital has any of these. Discuss your concerns with someone in one of these positions first if the nurses and doctors are still refusing to believe that you are not the problem... Your ped has just made a LOT of new enemies by her actions. One day saying that eating .5 ounce is fine and the next saying that YOU are not feeding her. You are the one taking her in because you are worried and the doctor has not been worried at all! This is absurd and I am so sorry that all this is happening...
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  #8  
January 22nd, 2011, 08:01 AM
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it's a general hospital with a peds unit. they kicked my 13 mo old son and i out at 1:30 am cuz he was too much a liability to stay the night. pissed me off royally. then they said oh she took between 2.5-3 oz every 3 hrs, Umm no she never did for me. Then she barfed it all up on her oneise but they refused to document it. i was royally pissed. I cannot have her transferred at this point. they d nothing fast here. still waiting to see the dr. i finally got her test results and her liver enzymes were higher then normal. they said it was due to lack of proper nutrtition. so another strike at me. she isn't even due until jan 27. they don't even give that any factoring in. they just say all preemies eat no matter what. umm no! that's bs. i am so angry at my ped and i am definitely writing a note. im also getting her medical records to see what exactly they wrote besides if mother doesn't start wakin more to contact cps. i don't know what the game plan is? I'm so angry ad upset. her hr keeps going into the 170's/180's and **** nurses say that's fine. how? That's not normal to me. doesn't that indicate something? she wouldn't sleep by erself last nightcuz she sleeps on me so they had to take her out to the nurses station and hold her, expose her to more frickin germs. if she catches rsv or the flu im done. this is right across the hall from the peds er, where sick patients ar coming in and breathing all over her.
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  #9  
January 22nd, 2011, 08:43 AM
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She needs to be in a NICU, not just a peds unit. Those nurses have no idea how to deal with her!! As far as what you should do, honestly... you are at their mercy. I would be willing to bet money this is nothing more than a lazy feeding issue related to her prematurity, and possibly some reflux. If you have ANY power over getting her transferred to a NICU, do that. That is where she needs to be. My heart aches for you, you have done nothing wrong; in fact, the hospital that discharged her should not have as she was not feeding well enough to go home.

I dont know anything about filing complaints against a hospital but in this case, I think you should. She should NOT be out in the nurses station exposed to anything at her age... just another reason they should have transferred her to a NICU. As soon as you get her out of that hospital I urge you to never take her back to that ped again. Find a new one.

Please keep us updated on her, I have been thinking of you a lot.
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  #10  
January 22nd, 2011, 09:38 AM
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The hospital she is at is not the one that determines whether she gets transferred or not. If you call a children's hospital and they understand what is going on...which they likely will if they have any sense of a brain...than they will likely request the transfer. She is not doing well and she is not fine. High liver enzymes are not in any way an absolute indicator for malnutrition. This hospital is terrible and she really needs to get transferred. Are you still nursing or have they made you switch to formula? I would start calling the closest ped hospitals to you and talk to a social worker or social service department to let them know what is going on. See if there is any way that they can somehow mandate a transfer because she is NOT getting the care she needs. If she is vomiting everything she took in or even just part of it than she is likely getting less than she was when you had her at home. The hospital is absolutely ridiculous and the Doctor is an absolute pain in the @55. I can't believe that she would act like everything is fine and then cause you and this precious baby all this pain and heartache. Try locating and calling a ped hospital and find out any way there is to get her transferred. Even if they can't get her into a NICU...they often won't admit to the NICU after the baby has been in the outside world, they will go to the regular floor or the PICU as needed... She needs better care than she is getting. Are any of your other kids old enough that their statement could be taken as to what was going on at home? If so that would be helpful for not only if a CPS investigation ever does come up but also for another hospital that most likely will be a LOT more knowledgeable about what is going on and will have not only you saying what was going on but also another person in the home. Also any friends that have seen how much she is sleeping, etc. The nurse is stupid to say that premies eat on their own. My twin brothers (now 4yo) were born at 33 weeks but weighed 5.5 pounds each. They were in the NICU for a month because they wouldn't eat how they were supposed to. If nothing else I would try to find another pedicatrian that would be willing to do rounds at that hospital, examine your baby, and request a transfer to a ped hospital that at least has a neonate unit even if she can't get into it because most of the time neonate nurses are rotated through the floors because their job is emotionally taxing.

Is there anyway to find a sitter for your younger child? That would allow you to be there constantly. I would also keep a record with time stamped pictures and a journal of everything that is going on in the hospital. That way you can document the vomiting and the feedings and the time stamps would coordinate with the nurse's notes and confirm that they are not documenting it even though it happened. Write down everything that you do and that the dr nurses and other hospital staff do and say in regards to your baby and to her tests and test results. This is shamefull on the part of the hospital and needs to be addressed. If you can keep a record and go in for a consult with another ped...see who your friends see for their kids or someone that you trust...and that may be the easiest way to get the ball rolling. I would give them all the documentation and tell them or write everything that has transpired that you can remember since her birth...especially the visits with the ped prior to the 180 and then showing their 180 to CPS after saying she is fine. I am so sorry that you are going through this and I am praying that you and your precious daughter will start getting the help you guys need soon.

eta: average resting heart rate range for infants up to 1 year is 100-160...NOT 170-180...
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  #11  
January 22nd, 2011, 09:41 AM
daysfancarlymanning's Avatar Super Mommy
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thank you so much. you put it exactly as it is...i'm at their mercy. it's 12:37 pm and I was told the dr would be here this morning....still waiting. they will not transfer her to the nicu as once she's been discharged she's seen as contaminated. And yes I agree she shouldn't have left the first hospital feeding only 1-1.5 oz but they said that was just fine. i have no idea how long we'll be here or what say or rights i even have, even if i am her mother. i am waiting to speak to the r and then asking for a social worker or the chaplain. She has been eating here better, which greatly concerns me that it'll prove them right, that it's my fault and she isn't a lazy eater. i feel you're right...that she is...I tried getting an oz into her after 2 hrs and she wouldn't take it. nurse said 1 oz every hr, 2 every 2 and so on. then new nurse said nope don't let her snack. i can't win i just wanna know the plan. her skin is sooooo dry and cracked and peeling here. it's terrible She is so content when i am here but at night when i leave it's horrible for us both. i told the nurse my displeasure at her being held out there all night with sick kids running in and out of the er and she said oh she's fine. the nurse protected her. NO she exposed her to millions of unncessary germs! Hospitals are so germy and yes should she God forbid contract something I will be filing a complaint for that. And against my ped for this. they refuse to see she's just lazy. they see her being 36w1d, 39 weeks now, and saying she's not lazy. she's fine.
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  #12  
January 22nd, 2011, 11:29 AM
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Have they checked her for pyloric stenosis? If she vomits after eating more than 2 ounces but never when it is less than 2 ounces that could be something they want to look for. It is typically found in the first 6 weeks of life as well. It wouldn't explain the laziness....which in our opinion has already been explained...but it would explain the vomiting if she eats more than 2 ounces.
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  #13  
January 22nd, 2011, 02:05 PM
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Im so sorry. My heart just aches for you. It is simply not true that they will not admit her to the NICU because she is considered 'contaminated.' Preemies are often sent home, only to be readmitted again. My own son was home for 5 days before the threat of sending him to the NICU arose. 3 of my 4 kids spent time in the NICU, and I seen it over and over, term babies came in with RSV after being at home, obviously 'contaminated.' They are kept in isolation, but still admitted into the NICU. It is a specialty unit with special training and special equipment to deal with these babies. When my DD was there, there was a 7 week old baby next to her who was admitted at 3 weeks due to severe reflux. They do it all the time. the 'N' in NICU stands for Neonatal, not Newborn.

PP offered some awesome tips on getting her transferred. I really hope you are able to get her out of that hospital. I cant believe anyone who works in a hospital would treat a newborn baby with such negligence. There is a possibility of an underlying condition, and they need to be sure to rule that out before pointing fingers and forcing milk into her, but Im still betting she is a sleepy feeder. One saying we used to hear in the NICU often was 'never trust a 35 weeker!' I realize your LO is a 36 weeker, but the reason behind this was that they would be doing so well for days only to have an abrupt turn around and stop feeding, start having apnea, brady, desat spells only because of their prematurity.

I hope and pray you find an end to this nightmare soon. Please, contact another hospital and see if they will put in for her transfer. My heart breaks knowing she is not getting the care she needs, and knowing how hard this must be for you.
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  #14  
January 22nd, 2011, 08:25 PM
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The NICU at the hospital I worked at didn't have any isolation rooms...maybe that is why...
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  #15  
January 24th, 2011, 06:48 AM
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How is Carly? How are you doing? I hope you guys are getting things figured out.
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  #16  
January 24th, 2011, 04:02 PM
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thanks ladies. i wrote a huge update yesterday and **** computer erased it. Carly came home today. We're due at the ped tomorrow and honestly I am so scared. Her weight gain was grea but some was the iv fluids and having just ate. The er ped told me it was just being a preemie and she was just term and she shoul be eating every 3 hrs, 2 oz. Her cholestasis she had from her liver enzymes being elevated were now normal and good. Her fast hr, which is as high as 204, had an echo done and all was ok but again er ped told us to follow up with a cardiologst. So I called the dr to tell them and the head dr I had the meeting with along with my ped gets on the phone and says she spoke to the er ped and basically contradicted everything, saying er ped told her 2 oz every 2-3 hrs, more towards 2. She said she's never had a sleepy preemie before act like this. The only thing on my side is that they cannot definitely say that her not eating was what caused the liver enzymes/cholestasis and we don't know if it was high before hand. But this **** ped is still of the opinion it was my fault. Here I've complied with every **** thing they've asked and still they say I'm guilty. She's been through every **** test and when they weighed her she had her leads on and had just ate but they don't account for that. I mentioned this to the ped and she poopahed it and i also said she'd rceived iv fluids. she said nope the weight was out of her ssystem. the nurses told me give her 48 hrs. So I'm absolutely terrified that tomorrow if we go in and her weight is down even 2 oz they're persecute me. I cannot live like this. It isn't fair. We are on an every 2.5-3 hr schedule and she is eating. i just feel like give me a break! My dad said unfortunately we cannot switch peds right now because if we do it's going to make me look guilty. I am just sick over this. Here the er ped agreed with me, then turns around and tells the ped I see no cardiologist is needed, feed more towards 2 hrs instead of 3, and I don't think she mentioned the preemie thing. I'm just so scared and frustrated.
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  #17  
January 24th, 2011, 06:30 PM
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I am so sorry hon. Did you get discharge pepers that said what she told you? I would switch peds but tell them everything that has gone on so that they can't say you are trying to hide something. That ped is a monster! Tachycardia is usually a symtom of an underlying cause such as high metabolism for example. 40 beats per minute above the average range is not normal. That it what mine sits at and I have to take medicine to keep it below 80 bpm...otherwise it shoots up to 130's on its own. The high heart rate could explain her lack of energy even if the prematureness didn't. Can you have the ER call your doc and tell them what her opinion is? I am so sorry hon...
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  #18  
January 25th, 2011, 07:21 AM
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thasnks apparently the darn ped said she spoke to the er dr. and er dr told her no cardio follow up was necessary. what you're saying makes total sense. she is eating much better but i want a cardio follow up. i know everytime she eats now it shoots up. stupid ped tried to tell me it was normal. my dad says it's bordering on harrassment at this point and to maybe contact a lawyer or file some sort of complaint. What are your thoughts? I have to go back today or else I risk cps getting involved. I HATE that. My dad predicts a weight loss due simply to the iv fluds, meds, and the wires she was weighed with. So do I. He says no baby gains almost 1 lb in 2 days. It simply isn't done. Even my ds didn't gain that much. I'm making myself a nervour wreck over what they're going to say.
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  #19  
January 25th, 2011, 11:24 AM
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I agree. Wires, fluids, and just being fed definitely contributed to the 1 pound weight gain. It really is impossible for a child that small to gain a pound in 2 days. I would contact a lawyer or legal aid. The ped is just rediculous. She has put a set of blinders on and refuses to see past them. Would the ER doc be able to give you the referral you need? You can contact the hospital and get the medical records for your stay. Show those to your doc and see how she can refute it. If she tries to raise cain I would definitely contact a lawyer. I know this would be un-nerving but could you contact CPS to find out if you could switch peds due to everything she is saying? She isn't treating your child, she isn simply trying to convict you of something you aren't guilty of and in the process letting your daughter suffer by refusing to acknowledge her symptoms. No offense but your ped sounds like an absolute idiot by saying preemies eat all the time and that a HR above 200 is normal in any circumstances where she hasn't been screaming for a WHILE... She needs a cardio follow up and if your ped won't do it than she is putting your child at risk...not you.
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  #20  
January 25th, 2011, 12:39 PM
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thanks. and sorry to hear your ds has the flu Hope he's better asap. Ped and I had a LONG talk today. Her weight was down from 7.3 ro 7.1 but she seemed ok with that. Said that the wires and all she would definitely note and take into account. I told her exactly how I felt and she told me she felt I was overwhelmed, being a single mom to 5 kids and that if my baby lost any weight she would absolutely call cps. She made that very clear. I pointed out to her how I was ALWAYS honest with her regarding my kids and their issues and she said yes she appreciated that because she has patients who lie to her outright and she knows things do not add up. I told her I was terrified of carly losing weight, any amount, and she said I should worry. I feel like I can't do this anymore. I'm strung SO tight from the stress and my milk is suffering. It's going way down and I'm asking for a script for reglan, which increases my supply greatly, or has before. I'm just terrified ANY time carly only gains 10's of an oz or doesn't gain what she wants I'll have cps involved. I cannot live like this. It's tearing me up. yes I am stressed and overwhelmed, because of this. I told her I seriously wanted to go out and buy a scale and weigh my baby hourly to see her weight. Crazy yes but I can't live like this. And she did give me the referral to the cardiologist. I pressed for that. Thank God!
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