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My now 7 month old and thriving dd was hospitalized day 2 after being born at home w/ a CNM in attendance. She turned blue and limp at the ped during the PKU draw. I cannot even begin to tell you how awful the hospital experience was IN SPITE OF my bending over backwards to make it clear the we appreciated their services, and didn't choose homebirth as an anti-hospital move (although I would now!!!!!). Communication from hospital staff was awful and contradictory, starting with "you can't eat in here" (ICU). I was too afraid of losing custody to refuse consent for all the invasive and painful tests and procedures even though no one would give me sound reasons for the worst of them (read TOTALLY UNECESSARY AND TOTALLY USELESS SPINAL TAP--TWO DRAWS). NEVER will I make that mistake again. They kept us for 5 days, after giving Talia severe jaundice by refusing to let me nurse her and giving her a glucose IV for 18 hours ("in case she's aspirating breastmilk") then trying to use that as a pretext for keeping her longer!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!.... I could go on for pages, but don't have time right now. But...<br><br>
The reason I'm posting now is because I'm gearing up to write a MEGA formal complaint, and need some moral support, cheerleading, perhaps even shared experience, lest I chicken out.<br><br>
I guess I also need a chance to VENT, so I can be non-hysterical in my official communication w/ the hospital.
 

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I'm very sorry that you had a bad experience, but I have to ask....wasn't the reason for the tests and procedures to determine WHY your daughter turned limp and blue? A healthy newborn should NOT be turning limp and blue. It seems like they would need to rule a lot of things out (sepsis, meningitis, GE Ruflux, heart anomoly, etc) to ensure that your daughter was okay.<br><br>
Would you have preferred that your daughter not gotten the tests and had something be seriously wrong with her that went undiagnosed?<br><br>
As far as the letter of complaint, the best thing to do would be to be honest about your feelings and the experience that you had. I would try to make it civil so that those reading it will be more receptive to what you are trying to say. Good luck.
 

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My dd was also taken to the hospital after her homebirth, but for her it was immediately after birth. She had severe meconium aspiration and was not getting enough oxygen. Unlike you, we experienced wonderfully supportive hospital staff (our homebirth was never questioned, and we were encouraged to do help with dd's caregiving) It wasn't a perfect experience by any means, but I did feel supported and informed by the staff, and I didn't feel that my dd underwent unnecessary risks.<br>
I do think that you should write a letter to the hospital about your experiences. Not only for yourself and your child, but for the future babies and families that will be treated there.
 

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I personally would go at it from the angle of how they treated you, not whether the tests were necessary or not. Since obviously, some of the tests are debateable (they WILL say, "sorry, but those tests had to be run" no matter what you say), but your feelings are not. I'd provide information on the importance of nursing ill babies in the picu, the possible dangers of giving glucose instead, including the potential for damaging the nursing relationship, making formula necessary. Explain that just because a person chooses the home for a normal event of life doesn't mean that they don't appreciate medical care when its needed. That kind of thing.<br>
And I do want to add, I agree some with the previous poster. By being so upset on all the tests they ran, you do make it look like you don't appreciate their care. I hope this doesn't come across as condescending of judgemental, but honestly, what did you want them to do? Were there just some tests that you opposed? Why do you feel that some of these weren't necessary? I'm mainly asking these as food for thought, not to ask you to justify your feelings. I don't know all the facts about what happened, what all was tested for, what was suspected, etc, but if my child were limp and blue, I probably wouldn't be opposed to letting them do whatever tests needbe to figure out what is wrong, and I'd push for all tests to be carried out in the least painful method, I'd insist on being present and if at all possible holding the baby while the test was being performed, and I'd insist on nursing unless at least 2 lactation consultants agreed that it was dangerous for the baby. In other words, I'd do all I could to ensure that the process was as non traumatic as possible. But anyway, my point is that by having so many objections to what you did, it will be hard for them to really think you appreciated their care. They should have treated you better though, I agree with you 100% on that. And they should be made aware of it.
 

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I don't quite understand.<br><br>
1. Why did you wait 6 months later to complain?<br><br>
2. Was your child healthy and then suddenly at the PKU draw she went limp and blue? What was her diagnosis given?<br><br>
3. Why is it awful and contradictory to be told not to eat in an ICU? Babies who are in ICU are very sick and bringing in food can also bring in germs that may make them even sicker. That's just common-sense, and I fail to see why that is a point of contention with the hospital.<br><br>
4. You were afraid to lose custody of your child if you did not do these tests? Were you told that by someone?<br><br>
5. Not nursing for 18 hrs while your child had a glucose IV would not damage a nursing relationship, especially if you were told they were afraid of aspiration. It sounds like the staff was more concerned about keeping a patent airway on your child than nursing, which is actually more important. You need to breathe to be able to eat. Also, an IV is NOT the same as a bottle of glucose water. DO you understand these things?<br><br>
6. You cannot give someone jaundice, and it unfair to blame the staff for it.<br><br>
I think you are misplacing emotions at the staff big time. It sounds like you went through a very scary experience with your newborn daughter, and maybe your expectations for your first few weeks of motherhood fell very short by circumstance, and instead of dealing with them maturely you are looking for someone to point the finger at. Enjoy your daughter, be thankful that she is healthy and happy now, and move on.
 

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Discussion Starter · #6 ·
Thank you all for some really good questions and important considerations. I wish more people would be willing to talk about this.<br><br>
khrisday, how is your daughter now? I'm glad that you had supportive hospital staff.<br><br>
I hope the rest of you won't mind if I try to answer your questions in conglomerate, given their number and the complexity of the issues involved. Please read the whole post before replying. Thank you again.<br><br>
Talia appeared to be healthy in every way before and immediately after the blue spell. In fact, we drove there from the ped in our own car, waited for over an hour in ER after the initial intake assessment, and ER staff even questioned that she had in fact turned blue at all, until she had a breath-holding spell during her ER exam (though, I was told, nothing long enough to be called apnea). The cardiologist in ER said the echo showed a slight shunting issue (a normal occurrence) that might have contributed, though I later found out (from the records and cardiology follow-up) that they really didn't think this was likely the cause, either. The only clue we had that anything might be "wrong" w/ Talia ahead of time was some initial nursing difficulty and a preference for sleeping propped up.<br><br>
Of course we'd hoped to find out what caused the blue spell and the subsequent oxygen desaturations w/ feeds. Unfortunately, even allowing all of the tests did not get us any closer to answering what happened except in the exclusionary sense (knowing what did NOT happen) and what could be surmised could have been diagnosed and surmised from observation and history alone. Also, there were only a couple procedures I wish I'd refused consent for or at the very least been given some information about before I consented, or requested no residents or interns for certain procedures. For example, it took several stabs for the arterial blood draw and 5 tries for the second IV placement (after the first hand started swelling)--when I finally requested a NICU nurse who got it in first try. Then there was the tech who mislabled the blood sample from the heelstick for bili levels before discharge...<br><br>
These things I blame on myself for not requesting more experienced help due to her age and condition, and on simple inexperience and human error. Difficult to endure, but totally understandable. But I (and my husband) actually have more issues w/ how we were treated in the whole process. He refers to it as "like a piece of the furniture." I appreciate the questions and suggestions for helping me clarify these distinctions for myself before I even attempt to draft a letter to the hospital, so I can leave out those things which it would not be helpful to include.<br><br>
I know everyone at the hospital was doing what they deemed to be their best for her and am grateful for their efforts—which is why I’m talking about a letter, not a law suit. But at the same time, we were treated w/ great suspicion by several staff members, and hospital staff did some things that put her at greater risk and caused her health to deteriorate--such as interfering w/ breastfeeding, bonding, and co-sleeping; stopping her up w/ a pacifier; discouraging kangaroo care; refusing to allow us to be there during her floor admission assessment... Their amazing ignorance of breastfeeding issues and practicalities alone should be criminal for people claiming to have a world-class neonatal facility--a TEACHING INSTITUTION no less!!!! The nurse who brought me the breast pump (at my request) didn’t even know how to use it! The hospital’s ONE lactaction consultant, who I had to request myself in spite of feeding issues being a major piece of the puzzle, wasn’t much help either (oh, maybe that’s why they didn’t call her?). And the nurse who was supposed to be on hand to monitor Talia's vitals during the initial feedings once I was given the green light to resume feeding by mouth (first expressed breastmilk by bottle) was so uncomfortable even being in the room with me during breastfeeding that she told me to get someone else!<br><br>
I am SURE that MUCH of my emotion about the whole experience is displaced--including anger at myself for not better advocating for Talia's needs in the hospital--which is why I wanted to clear my head about it, AND have an opportunity to vent a little and sort it all out better before writing to the hospital. Additionally, I wanted to see what, if any, light could be shed by the follow up visits with the pulminologist and cardiologist at 4 and 6 months respectively. Also, the sheer complexity of it all, again wanting to be sure I can objectively state where care or information transmission was inadequate.<br><br>
I have no prob w/ not eating in PICU rooms as a general rule, although the reason I was given was to prevent the kids themselves from feeling bad if they're on a special diet, and to make sure parents don't feed them stuff they can't have (either knowingly or not), and not the germ issue that you mentioned. My frustration was complete lack of appreciation for the fact that babies need their mothers, and postpartum mothers need nutrition AND rest--not to be hiking from one wing of a huge hospital to another to fetch food in the cafeteria. I disregarded the rule, which I'm sure irked them to no end, but this was in part because no one told me I had any other options--like eating out in the lobby or keeping labeled food in the patient fridge! (Which I didn't even know EXISTED until I found it myself!!!) I am more irked that this was the ONLY PICU rule I was told, and only because I was breaking it! I wasn't told that I could listen in on rounds to get a better sense of what was going on w/ my daughter. I wasn't told that visitors should be limited or discouraged on PICU. I wasn't told that EVERYONE in and out should wash or sanitize their hands every time in and off the floor, in and out of the room... I found all of this out AFTER I'd left the hospital! (The floor brochure was in our piles of DISCHARGE paperwork!!!!)<br><br>
I know that they did not "cause" Talia's jaundice. But recent studies have proven that cessation of breastfeeding and glucose IVs specifically EXACERBATE neonatal jaundice, whereas the opposite was previously thought to be the case. And I know that her jaundice was not "caused" by my breastfeeding her in the first place, which one of the docs actually said (talk about ignorance!!!). Also, they also put her on oral erythromycin, which should not be given to anyone with jaundice or any type of liver compromise. You are wrong about refusal to breastfeed in the first week of life not potentially adversely affecting the breastfeeding relationship. Nipple confusion is not the only issue at hand. And no one could answer my simple question (I asked three or four times) why a breastfed (as opposed to formula fed) refluxer needs a bowel motility agent (the oral erythromycin). A simple "we don't really know" would suffice!!! Why are doc and nurses so damned hesitant to say “We don’t really know”???!!!<br><br>
The discharge diagnosis on the written discharge sheet I was given stated "GURD" only, and that, I was told, may or may not have contributed to the problem and is something many babies overcome on their own! The pulminologist who discharged us said the O2, Apnea monitor, and meds were more for our reassurance than anything else, and that it was up to us if we wanted to use them or not (???!!!) When I went back for follow-up 2 weeks later, he tried to talk me into resuming monitoring (which we’d discontinued) because it was already paid for by insurance anyway so we might as well take advantage of it (not taking into consideration any of the psychosocial implications of its use) and he wanted the data for his research!!! The official discharge summary (which I obtained from Talia's hospital records) lists apnea, feeding difficulty, and neonatal jaundice as the discharge diagnoses. Reflux was mentioned in this discharge diagnosis as a “possibility” only--the meds given "just in case" and due to the seriousness of the potential complications should that have been an contributing factor.<br><br>
I've waited 6 months plus in part hoping to gain some perspective once the intial emotional toll of the hospitalization had subsided and also hoping that my follow-up visits w/ the specialists (cardiac and pulminology) would help clear up some misunderstandings. That's when I found out the cardiologist didn't believe the shunting prob (which had by six months resolved itself) had anything to do w/ it, that the reflux really was believed to be a secondary issue, and that Talia was (aside from the reflux) just about perfect in every way and that her early problems were likely system immaturities which resolved themselves rather quickly.<br><br>
The diagnostic tests I'm really upset about are the upper GI test and the spinal tap. As for the spinals, I was strep b negative, they did prophylactic antibiotics anyway, and the home birth meant risk of infection was incredibly low (they even admitted that). I was not told by any hospital staff what the spinal tap was for, what the procedure entailed, or any risks. They sent me out of the room to pee "while they prepped her" and it was only when I returned that the ER doc who was about to perform the procedure (needle mid-air) asked if I'd been given informed consent. Her jaw literally dropped when I said no and hastily said the risk was infection before proceeding (Yes, with my consent. Mind you, my daughter was screaming before the needle even went in and I just wanted to get the whole thing over with as soon as possible.) That CANNOT be deemed reasonable informed consent under the circumstances.<br><br>
I was told the upper GI test was to rule out anatomical abnormalities which would allow milk to go through the esophogus into the windpipe. I am glad that they did the test, but also angry that it was not tested for until the next afternoon (hence starving her and keeping us BOTH awake all night), and that when it was done, the nurse (who formula-feeds her own infant) would not even take the elevator back upstairs for some of my breastmilk for the test which I had been pumping and storing.<br><br>
I think that the question about would I prefer something be wrong and not have it discovered rather than go through painful and invasive and risky procedures unnecessarily was meant to be rhetorical. But I actually think it's impossible for me (or anyone) to answer the question. In spite of 3 miscarriages and one other living child (now 3 1/2) (hence some small comprehension of what it means to know and rear and love and have my life filled with the joys and frustrations of parenting a child as well as some comprehension of the grief of losing children), I still cannot answer this question. All tests and procedures bear risks, and some are not worth the risks they entail. We all do our best to balance the known risks, hospital staff included. But as the ones morally and legally responsible for the health and wellbeing of their children, and who ultimately have to live with the outcome, PARENTS should be the ones given the information and given the final say. I know docs and hospitals are morally and legally responsible to some degree as well, but the laws and legal precedents in the U.S. have supported my position on this, and medical practice should as well.<br><br>
I know part of our experience stems from the fear-filled and ass-backwards birth environment here in anal and stressed out No. VA where all things natural are shunned and lay midwifery is prohibited by statute and midwives have been prosecuted (which is the only reason I bring up the CNM status of my midwife--to make clear that my birth was legal since I was treated by some hospital staff like it was not).<br><br>
But this particular hospital also has a reputation for being amazingly ignorant about breastfeeding and almost hostile towards birthing women and postpartum mothers. Within a month of my experience, two other women from my church congregation had somewhat similar experiences at this same hospital w/ their hospitalized neonates in terms of poor communication that in turn affected the care of their baby. [One of these moms--the mother of 4 previous children--was dismissed when she repeatedly asked about the heat of the incubator her son was in for bililights. Two days later, a TECH exclaimed, "This incubator is WAY TOO HOT!" It was on the highest possible setting, and my friend's son had to be kept for two or three more days due to severe dehydration. And another mother who was discouraged from breastfeeding by being told that her full-term son was too small to breastfeed (She herself is tiny. Her son was 5 1/2 lbs). She's been pumping and bottlefeeding her breastmilk to her son for 5 months!!! Now THAT'S dedication!] THAT is why I want to write a formal complaint. Because I know that other, and even totally mainstream/ conservative/ 100% medically compliant mothers are having experiences adversely affecting their children's health, too. That is to say that it's not just because I am already seen as anti-medicine for having chosen home birth, but I think that ADDED to the defensive and non-communicative stance of some of the hospital staff. Whereas both of these women from church had hospital births--one there, one transferred from a smaller hospital.<br><br>
I can see how the custody fear sounds a bit paranoid out of context. But a close and long-time friend of mine out here lost a child to SIDS not long ago and they were totally investigated... After that, I did a bunch of SIDS reading, which included stories about hospitals getting court orders to override parental consent in suspicious near-SIDS cases. Given how we were questioned about the "supposed" blue spell before it actually happened before their eyes made me nervous because of what I'd read.<br><br>
*edited to insert a few things I'd forgotten and clarify a few points
 

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Alittle <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/oops.gif" style="border:0px solid;" title="oops">T, but pertinent nevertheless...<br><br><br>
All of my four children were born at home. When they were 7,5, and 3, and the youngest yet unconceived, I went to the ER with symptoms of a kidney stone/disease....my DH drove all of us to the local ER and the DH proudly told all of the ER staff that all of the children were born at home and this was OUR very FIRST TRIP to the ER.<br><br>
WELL...<br><br>
I was treated very poorly. I had pain and trouble urinating and left on the table to deal with it. When I was went to the restroom, I passed out from the pain twice and left alone in the rest room where I passed out again. When I was released, the nurse took the prescription, waved it inches from my face, and firmly and tersely told me that <span style="text-decoration:underline;">I</span> was to take ALL of them or else!<br><br>
Hospitals always see the homebirths in which something goes wrong for whatever reason.<br><br>
HOwever I did not deserve to be treated as a naughty child.
 

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You need to seriously think about what you want to come of writing to the hospital. If you need to let your feelings of anger out, then I would suggest continue venting here or write a letter but never send it, because if you write what you are saying now it will just thrown in the trash because of your unreasonable and vindictive tone.<br><br>
For instance, the attitude of "which is why I am talking about a letter and not a lawsuit" is offensive to me on many levels. To bring a lawsuit against a hopsital means you think the care of your child was medically negligient, nothing you have written has indicated mistakes were made in her care, your issues seem to be they were TOO thorough in their care. I think one of the reasons that hospitals are very quick to perform invasive procedures is to prevent lawsuits because someone can come back and say they did not do everyhting in their power to care for their loved one, and if people did not bring frivolous lawsuits as often as they did the medical establishment would be more willing to step back and not push so many tests and procedures on patients. So please, do not threaten a lawsuit lightly. Lawsuits are the reasons lay midwifery is under attack, that c-sections are performed at a desperately high rate, antibiotics and other questionable medications are prescribed at a drop of the hat.
 

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Christina, I thought that in saying that, she was saying that she doesn't think this warrants a lawsuit, just a letter. She wasn't threatening a lawsuit. She's saying its not THAT big a deal.<br>
I think you should focus the letter on trying to come at it from a helpful angle - they need more LC's, and they need to learn how to treat new parents, especially those who had a homebirth.
 

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ldsmama -- I should have found your post a little earlier. I'm not sure why this has so many people up in arms. (Or maybe I'm just reading more into our non-face-to-face communication here)<br><br>
Before I even read your 2nd post I believed you. I believe that you were treated unjustly and that some things the hopsital did were truly not needed.<br><br>
The reason I believed you is because I have heard stories very similiar to yours. You are not alone.<br><br>
I have had a homebirth as well and am planning another at the end of winter. Many times when a hospital staff learns that your child was delivered at home under the care of a CNM, Dr, LM or unassisted you are automatically treated differently. Your infant will undergo many more tests than a hospital born infant would. And you will be treated like a naughty child. That said, there are some exceptions and some hospitals are wonderful. But, many, many have red flags go up when homebirth is mentioned. Homebirth is deemed unsafe by most of the medical establishment. They are going to look for anything that could possibly be wrong with the condition present and a whole host of other conditions that you did not come in for.<br><br>
It is unjust. You suffered an unjustness. It's awful when your child is ill. It is insult to injury when she and your family is treated poorly.<br><br>
Sounds like that hospital needs some more education so they really can be a teaching hospital! So many things they don't know!!!<br><br>
I'm sorry that you went through this. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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ldsmama,<br>
My dd is now 4 and very healthy. She has physical scars (from surgery and IV's), and most likely some mild post traumatic stress. She has Reactive Airway Disease (asthma that occurs mostly at night), and a lot of sensory issues, but her issues are very mild and her development is normal other than that.
 

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I cannot believe that you are even level headed enough to write a letter. i would still be furious!! yes you do need to write a letter - what exactly to put in it? don't have a clue. I know the last time i was in a teaching hospital i could have hurt someone by the way they treated me. I always tell the staff no interns or students when it comes to any of my children ( they only time i let them it took 4 times to get blood from my dd because of a lead test). Doctors and nurses think IMO that the mainstream society cannot be smart enough to know anything and they get a holier than thou attitude - yes there are excetions. It really erks me that they didn't listen to you more because mothers' instinct is usually right on. of course when they get a new specimen- or patient- they just go nuts to get as much test and things to bill insurance so that their bills get paid. And the breast feeding issue you are completely correct. Some times breast fed infants do go through a little jaundice a couple of days after they are born. not giving them breastmilk to fix it is the worst thing one can do. I feel for your Talia and am very happy that things are going great. Wish you lots of luck and support on this endeavor.
 

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I know just how you feel ldsmama.<br><br>
My second dd was born at home and did great from birth, Apgars of 7 and 10. No problems until her third day of life. She slept all through the day. She would wake and nurse every couple of hours but only for a few moments. I was concerned and called my midwife. Her cord fell off that evening and she had a drop of blood on her belly button. Normal, but it worried me. My midwife suggested we go in and get the Vit K shot just in case. We went to the emergency room to request it. They hooked her up to a oxygen detector (the thingy they put on their toes, on adults fingers, lol sorry, it was about 2 years ago...I don't remember the words) I regret that I don't remember what her level was, but it was low. Too low for their comfort anyway. Temp was taken, pulse, all the regular. They got her an iv, took blood samples to test and started antibiotics. Did a chest xray and wanted to do a spinal. Fortunately they decided to transfer to a bigger NICU and the bigger hospital did not want do the spinal. We waited for a few hours for the plane and I flew with her on the 2 hour drive, milk spewing everywhere, so engorged and exhausted. She was checked into the NICU and I was given a little bed to sleep in. Dh was driving up through the night.<br>
She was on IV and apnea and oxygen for the two days she was there. We were so blessed to find a room at the Ronald Mcdonald house just down the street. She was discharged after two days with an oxygen tank on the lowest setting. They never found out what was wrong with her but she did fine the whole time. Nursed well, absolutely no problems at all. They had no clue why she was there with all the tiny sick babies.<br><br>
At the time all seemed well. Depressing and exhausting, but ok. Looking back as months passed we see where things went wrong.<br><br>
We originally went in because I was concerned about her not nursing enough and being lethargic. Oxygen was checked and was low so give her oxygen. All is ok there. Taking off her diaper to check her temp it was poopy. I remember this for sure because we didn't have a spare and they had to run get us one from the maternity ward. During the temp check she pooped all over the bed. After the temp check she continued to poop a couple of times. Lots and lots of poop. I remember this because it was very funny. lol lots and lots of yellow breastmilk poop. At the time I didn't connect it but looking back I cannot believe they gave her IV fluids. It was more than obvious she was not dehydrated. My little un medical theory is that my milk came in very rapidly and she was getting all the milk she needed in those few minutes of nursing every hour or two through the day. She had been wetting plenty and passing meconium/transition poop but I let them hydrate her for no reason.<br>
I don't remember everything as well as I should and as I look back I wonder what was right and wrong. It seems to me that an infant that has a low oxygen level and thats it, no dehydration, no fever, no acting strange (she was awake and kicking the entire time we were there until she became too exhausted after all her crying through the procedures that she fell asleep.) I just wish I had been smarter at the time so that I could have advocated for her more. From what I remember and can comprehend I feel like I should have alowed the oxygen, chest xrays(since breathing was her obvious problem) and perhaps, very perhaps, the blood tests. Looking back I would not let them fly her/us to a big hospital NICU without more evidence that she was sick.<br>
Our treatment by both hospitals was decent. But I can't tell if they were overreactive because we were a homebirth or not. They were friendly and all but they just did so much so quickly to a healthy baby.<br>
Please don't call me ungrateful or tell me I would put my child at risk. I am grateful for modern medicine and all they can do to save our children. I just, like the op, wish they would explain more. I love our pediatrician because he does something I have never heard another doctor do. He looks over my baby and asks all the questions than he tells us "It could be this or this or this. If it is this than this, if it is this then this. This is very rare and it is most likely this. Go down to the lab and get this tested and we will rule out this." I would really have appreciated that on that day. If that had been done perhaps I would have seen for myself that all the tests were necesary and my outlook would be different. From where I am and the way they handled it all I can think is that they hospitalized my mostly healthy baby and did painful prodedures when all she needed, as far as I can tell from what I was told, was a little oxygen.<br>
Neither I nor ldsmama are claiming to be doctors. Just moms who want the best for their babies and feel they were uninformed and their babies mistreated.<br>
Also, if I had known more at the time I would have insisted on sharing a room with my baby(don't know if it is possible) but if not i would have sat there with her all night and not let them convince me to go and let them give her a bottle. I appreciate NICU nurses and docs but I found the place pretty unfreindly to ap ways.
 

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Ok, I have been reading this and I really feel moved to respond.<br><br>
Firstly, shame on them for not educating you more on what was going on. A little shame on you for not demanding more knowledge about it from them. From your posts, I do feel you probably came off as anti-medical establishment and I know from personal experience how some drs. can get when they think they are being questioned.<br><br>
I'm just going to go through and try and explain some of what happened and maybe you'll feel a bit better about it.<br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">Talia appeared to be healthy in every way before and immediately after the blue spell. In fact, we drove there from the ped in our own car, waited for over an hour in ER after the initial intake assessment, and ER staff even questioned that she had in fact turned blue at all, until she had a breath-holding spell during her ER exam (though, I was told, nothing long enough to be called apnea). The cardiologist in ER said the echo showed a slight shunting issue (a normal occurrence) that might have contributed, though I later found out (from the records and cardiology follow-up) that they really didn't think this was likely the cause, either. The only clue we had that anything might be "wrong" w/ Talia ahead of time was some initial nursing difficulty and a preference for sleeping propped up.</td>
</tr></table></div>
The slight shunting could have contributed to it but likely was not the cause. What was her weight at birth btw?<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">Of course we'd hoped to find out what caused the blue spell and the <b>subsequent oxygen desaturations w/ feeds.</b> Unfortunately, even allowing all of the tests did not get us any closer to answering what happened except in the exclusionary sense (knowing what did NOT happen) and what could be surmised could have been diagnosed and surmised from observation and history alone. Also, there were only a couple procedures I wish I'd refused consent for or at the very least been given some information about before I consented, or requested no residents or interns for certain procedures. For example, it took several stabs for the arterial blood draw and 5 tries for the second IV placement (after the first hand started swelling)--when I finally requested a NICU nurse who got it in first try. Then there was the tech who mislabled the blood sample from the heelstick for bili levels before discharge...</td>
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The part I bolded is the most important part of your post. She not only had a blue spell, but she was having desats while she was fed. That explains why they would not let you nurse, why they did the upper GI and the reason they did the spinal is that infection can cause a baby to die very very quickly when they are little, and it is better to check than to assume all is well. I was GBS -, I was tested for it many times, but because of persistant preterm labor, I was given antibiotics when I delivered, in case the amniotic fluid was infected or similar. When my DD ran a slight fever about a week after she was home, she almost had to have a spinal tap, but thankfully the fever broke. Spinal taps are horrible, but they often mean the difference between life and death in an infection sense.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I know everyone at the hospital was doing what they deemed to be their best for her and am grateful for their efforts—which is why I’m talking about a letter, not a law suit. But at the same time, we were treated w/ great suspicion by several staff members, and hospital staff did some things that put her at greater risk and caused her health to deteriorate--such as interfering w/ breastfeeding, bonding, and co-sleeping; stopping her up w/ a pacifier; discouraging kangaroo care; refusing to allow us to be there during her floor admission assessment...</td>
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Ok, the reason they interfered with BFing is because her O2 levels would go down when she was fed. That could kill her. They wanted her alive. Co-sleeping the same thing, most hospitals will discourage it because it is not proven safe (I know, neither is crib sleeping) but it is more difficult to monitor babies in bed with mom and if there was a life threatening event, you could get in the way. Plus, she seemed to need to be kept at certain angles to have good o2 sats, which you mentioned earlier.<br><br>
The reason they wouldn't let you be there for the floor admission assessment is likely for privacy reasons. For certain times throughout the day, my kids' NICU was closed for information updates amongst the staff. Parents were not allowed in to protect the privacy of the other babies.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I know that they did not "cause" Talia's jaundice. But recent studies have proven that cessation of breastfeeding and glucose IVs specifically EXACERBATE neonatal jaundice, whereas the opposite was previously thought to be the case. And I know that her jaundice was not "caused" by my breastfeeding her in the first place, which one of the docs actually said (talk about ignorance!!!).</td>
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In some cases jaundice can be caused by BFing, especially in the cases where the mom and baby do not have the same blood type. In your DDs case though, cessation of BF and glucose IVs were necessary for her health. Don't fight about that one. They needed her to be able to rest and get the IV without expending energy to feed, especially if it was causing her to have lowered O2 levels.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">You are wrong about refusal to breastfeed in the first week of life not potentially adversely affecting the breastfeeding relationship. Nipple confusion is not the only issue at hand. And no one could answer my simple question (I asked three or four times) why a breastfed (as opposed to formula fed) refluxer needs a bowel motility agent (the oral erythromycin). A simple "we don't really know" would suffice!!! Why are doc and nurses so damned hesitant to say “We don’t really know”???!!!</td>
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Because she was on IVs and BF was ceased because of her breathing issues, she would have needed laxative/bowel motility agents to keep the meconium passing (which would aid in helping the jaundice)<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">The discharge diagnosis on the written discharge sheet I was given stated "GURD" only, and that, I was told, may or may not have contributed to the problem and is something many babies overcome on their own! The pulminologist who discharged us said the O2, Apnea monitor, and meds were more for our reassurance than anything else, and that it was up to us if we wanted to use them or not (???!!!) When I went back for follow-up 2 weeks later, he tried to talk me into resuming monitoring (which we’d discontinued) because it was already paid for by insurance anyway so we might as well take advantage of it (not taking into consideration any of the psychosocial implications of its use) and he wanted the data for his research!!! The official discharge summary (which I obtained from Talia's hospital records) lists apnea, feeding difficulty, and neonatal jaundice as the discharge diagnoses. Reflux was mentioned in this discharge diagnosis as a “possibility” only--the meds given "just in case" and due to the seriousness of the potential complications should that have been an contributing factor.</td>
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Exactly. Both of my babies had reflux and grew out of it on their own, but your child had her O2 levels go down with it. That's very serious, and why they were more cautious.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I can see how the custody fear sounds a bit paranoid out of context. But a close and long-time friend of mine out here lost a child to SIDS not long ago and they were totally investigated... After that, I did a bunch of SIDS reading, which included stories about hospitals getting court orders to override parental consent in suspicious near-SIDS cases. Given how we were questioned about the "supposed" blue spell before it actually happened before their eyes made me nervous because of what I'd read.</td>
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I know it is terrible and frustrating when it is happening to you, but the sad thing is some parents do kill their babies and these people do not know you, so they have to ask these questions to try and keep babies safe.<br><br>
I would suggest you write a letter about their problems with BF advocacy, as well as their lack of communication with the parents. They should have a liason or at the very least a notebook, they give to every parent coming into the NICU to explain to them the policies, their rights and the rules, as well as any resources or tips they can pass on to parents. Perhaps you could offer to help a nurse put something together. I could give some resources to build a packet for NICU information.<br><br>
It's terrible to see your child in pain, it's terrible to look back in hindsight and wish you had done things a different way or advocated more, but coming out swinging is not your best way to go. Good luck
 

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Thanks again everyone for your input and things to consider. This is exactly what I've been needing for a good while.<br><br>
khrisday--I'm glad dd is well overall. My son (3 1/2) has asthma as well--but that's a whole 'nother thread topic for me. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> Have you found anything helpful for your dd's emotional healing? I'm looking into energywork for my daughter. A friend of mine has found cranial saccral massage therapy and Reiki helpful. While healthy overall, Talia definitely has an over-reactive response to pain (SCREAMS when she's even slightly bumped) and separation anxiety to excess. She also freaks out in the car seat, but that's pretty normal for a 7-month-old.<br><br>
Don't worry, Empress. None of what I've said here is even being considered for my hospital letter. I know this all would be as quickly censured or summarily dismissed as my questions and feelings were while at the hospital with Talia and am WELL aware of the ramifications of our litigious society on the practice of medicine AND midwifery. I'm still in spewing phase and thought I was posting to a forum of primarily not-western-medical-establishment people here to sort it all out. I had no idea I'd have the benefit of representatives of the medical establishment RIGHT HERE to help me sort through all of this. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> I agree that the approach MUST be cooperative rather than vindictive if my goal is to get anywhere.<br><br>
Obviously I'm not going to try to take on their medical knowledge or treatment protocols since I'm not a doctor and actually, don't really have issues w/ the protocols, just some of their attitudes and lack of more helpful information.<br><br>
Thank you for your input, BRG. I agree I should have asked even MORE questions, but you have no idea how butt-kissing I was (being aware of the defensiveness of many docs and nurses about homebirthers) to every person who walked through the door to so much as peep at Talia! Thanking them for their time, their expertise, their good will (some of them NOT!), and expressing our gratitude for western medicine itself. Because of my questions am sure I garnered MUCH more information while there than many parents.<br><br>
In fact, at follow up, the pulminologist commented that he thought I did a better job at putting together all of the contradictory information from multiple sources and garnering an understanding of the overall picture of Talia's condition, as well as assuming responsibility for her care, than most parents! And there are some things I AM proud of having done--like staying with her for subsequent tests and procedures instead of listening to the well-meaning nurses who urged that it would be easier to bear if I would just leave the room. [as a side note--while it might feel reassuring to a nurse who has to listen to babies cry and insert and remove IVs etc every day at work to think this, it is not helpful, but rather minimizing, as a parent to be told "She won't remember any of this." And in fact recent psychological research disagrees.] I'm sure the presence of the parent makes certain nurses more nervous, and the procedure therefore more difficult and hence more painful for the child. But I don't believe that anything is more lastingly painful that psychological pain--as separations from their mothers are for newborns. And I simply told them "Since she has to go through all this pain, the least I can do for her is be here."<br><br>
Some people--in or out of a hospital--are going to have issues w/ a home-birther, or someone who asks even ONE question, regardless of their stance (ie whether humble or vitriolic), let alone someone who wants to know OPTIONS and pros and cons of various treatments instead of just saying "Just tell me what to do." <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/bow.gif" style="border:0px solid;" title="bow"> And of course I encountered a range of personalities while we were there, some more defensive, some more open, and tried to work more with those who were more open--as I'm sure they did with me. (I think one doc even refused to work w/ Talia further after I did one feed AMA at 4 am just to get enough in her tummy to allow the both of us to sleep some!!!)<br><br>
Talia was 7 lbs 2 oz, 20" at birth. Labor was spontaneous and uncomplicated at 37 1/2+ weeks, and I know the day I conceived--so we know she was not any earlier. Her APGARS were 8 and 9 (deductions for color) and she received blow-by 02 for a couple minutes at birth but was breathing on her own and pinked up in a matter of minutes.<br><br>
I'll have to finish this later.
 

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She's had some body work from a chiro, and a little bit of play therapy, but the therapist felt that she was dealing with it well on her own and that it didn't need to continue.
 

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Okay, let's see where I was... And be forewarned that a good portion of this is a rant...<br><br>
2much2luv and mirium (not a bit off topic)--Thank you for sharing your stories, too. How did the two of you find resolution for yourselves?<br><br>
khrisday, do you agree with the therapist? (about how your daughter is doing?)<br><br>
kellyr2--good suggestion about including the LC thing and the homebirther's experience in particular, since THAT I am an expert on. :) (Though not the new parent part--I'm grateful it WASN'T my first, or breastfeeding certainly would have been doomed! And it's the best possible thing for a refluxer!)<br><br>
I have thought that perhaps part of the problem was that I was putting things together pretty well for an ignorant home-birther <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/rolleyes.gif" style="border:0px solid;" title="rolleyes">: and so they assumed that I was getting the info I needed. But how on earth would I know that the barium swallow needed a milk base that could be formula or expressed breastmilk and that the nurse was supposed to bring it down to radiology with us?! I was doing my best to not pass out as we almost RAAN down there from our floor! How on earth would I know what the rules about the PICU were without being told?<br><br>
I know the hospital cannot be held responsible for individual staff attitudes and comments. But overall guidelines for respecting individual patients and their guardians and recognizing the difficult toll hospitalization pays to parents (especially postpartum moms!) as well as their kids should help moderate some of these. (Such as the intro packet suggested--really good idea.)<br><br>
In fact, that gives me a good idea for my letter--beginning with specific examples of things that I DID find helpful. And I've already set the stage for that kind of positive exchange both in my follow up visits and on Nurses Day with current photos and thank you cards to several of the nurses who I did find helpful.<br>
See! I'm not anti-medicine! For heaven's sake, our kitchen is a virtual parmacy with all of the drugs me and my kids are on for allergies, asthma, and reflux!<br><br>
I'm curious what made you think I "probably" came across as anti-medicine w/out having even been there or met me is beyond me!!--unless of course you would make the same assumptions about a homebirther that some of the hospital staff I worked with obviously did!!! Or do you assume that anyone who has a bad hospital experience brought it upon themselves? Or that anyone who asks questions or refuses consent for any test or procedure than an MD recommends is anti-medicine?<br><br>
Every article I've seen about getting good medical care encourages individuals to ask questions, make notes, get second opinions, and be proactive in their own healthcare in order to avoid potential human error, get the best care possible, and be most satisfied w/ your experiences. And I encourage my childbirth clients to work WITH their providers instead of setting up an adversarial system. And yet many medical people are SO defensive with even ONE question or request for exception! I know nurses are overworked and stretched. I know things need to be orderly and etc in a hospital. But COME ON!!! What impelled you to set me straight enough to actually POST instead of just browsing as per usual?<br><br>
Yes, some parents are murdurers. Home birther does not equal irresponsible, negligent parent!!! Quite the opposite!!! I hate that medical personnel will seldom admit that hospital birth bears serious risks, too. And that when unplanned or unattended home births are factored out, planned home births have BETTER outcomes than hospital births!!! Birth is not dangerous--interventions are! Some medical staff are murderes, too! But that didn't make me treat every staff member as if they personally were trying to kill my baby!!!!! Ever hear of presumed innocence? Even if my home birth had been with an illegal midwife, even that would not be a reason to assume that I don't have my baby's best interest at heart!<br><br>
About the spinal taps I neglected to say that the reason they ended up being useless and unnecessary is that both draws were traumatic and compromised, so while a positive result would have been significant, a negative one is considered inconclusive. And yet they weren't about to redo the test, and THAT is what made me wonder why they "had" to do it in the first place. Also, she didn't have a fever or any other sign of infection. Couldn't we have asked to wait on that like you did? (And wouldn't it have been nice if I'd have been able to ask these questions BEFORE they performed the proceedure?)<br><br>
About the glucose IV and the oral erythro which can cause jaundice--the oral erythro was not started until right before breastfeeding was resumed. It was given for the reflux with the Zantac, and not for the jaundice, and as a substitute for Reglan, considered by these docs as too problematic given her issues (and with which I agreed). I was told that it was a relatively new use of the motility effects of erythromycin, and I knew that it was crosslabel use, which I'm not real comfortable with (either aspect). My question (knowing that it was given as a bowel motility agent) was why was it needed in a breastfed baby after the first day and since her bowel movements were VERY frequent and loose and especially once we were leaving the hospital. I asked three different doctors. They all repeated to keep things moving through and to avoid using Reglan, but did not address the specific question about breastfed vs formula fed reflux babies. Why on earth would you need to pooh more than 8 times a day/ practically every feed??!! I did not want to give my poor baby the runs on top of everything else! This one we did discontinue (w/ the support of our pediatrician) after discharge.<br><br>
Also, reflux aspiration with breastmilk is not as serious as w/ formula. The body is more able to absorb it (as it is not perceived as a foreign body as formula is) and aspiration pneumonia is much much much less likely (I'll see if I can find the stat on this but my recollection is practically nil). There was one other point here, but I can't remember what it was. Oh, wouldn't that have shown up on the chest x-ray anyway, it it were significant enough to be a problem?<br><br>
This reminds me of my other frustration that no one told me what specific things I should be looking for or reporting to the nurses (I know, it's all my fault, I should have asked) in terms of symptoms of concern with feeds once I Talia's feeds were no longer monitored by a nurse. I got all this info again when I checked out. I did tell the pulminologist at follow up that it would have been immensely helpful to have had that info while still in the hospital. To have been given some info about what the nurses were looking for and reporting on, instead of them just asking how the last feeding went and me saying fine.<br><br>
I also wish I had at least ASKED for a full-sized bed even if they would have said no, and since we were only in PICU for a day and a half--or at least when they took her off ICU status (which I also had no idea what that meant in practical terms--in terms of how many visitors I was permitted, how much less often staff would check in on us, etc.)
 

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Oh, one more point. Even if you ASSUMED that I was anti-hospital or anti-medicine on the basis of my choice of birthplace, wouldn't that make it MORE important to insure that informed consent was obtained, and be extra sensitive to the feelings of the person involved, since they are exactly where they hoped not to be? Rather than antagonize them?
 

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Yes I agree. When she was about 2 (actually around the time she was going through bodywork) she was having nightmares about her surgery that were pretty frequent and scary. When we took he rin for therapy, I just wanted an educated opinion about how she was dealing with it. I could see that she no longer has the memory, and I think that's better. The therapist felt that any therapy revolving around that issue would possibly bring back up issues that she had already dealt with. It's not often that a therapist says someone doesn't need help LOL This was a person who I really trusted.
 

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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I'm curious what made you think I "probably" came across as anti-medicine w/out having even been there or met me is beyond me!!--unless of course you would make the same assumptions about a homebirther that some of the hospital staff I worked with obviously did!!! Or do you assume that anyone who has a bad hospital experience brought it upon themselves? Or that anyone who asks questions or refuses consent for any test or procedure than an MD recommends is anti-medicine?</td>
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Because that's how you came off in your post. I can only judge by that. And I agree that too many drs. are too defensive and get upset when you question them at all. I've had that experience. (I've also requested to never deal with those drs. again) I myself have refused recommended treatments and fought with hospital staff.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">Yes, some parents are murdurers. Home birther does not equal irresponsible, negligent parent!!! Quite the opposite!!! I hate that medical personnel will seldom admit that hospital birth bears serious risks, too. And that when unplanned or unattended home births are factored out, planned home births have BETTER outcomes than hospital births!!! Birth is not dangerous--interventions are! Some medical staff are murderes, too! But that didn't make me treat every staff member as if they personally were trying to kill my baby!!!!! Ever hear of presumed innocence? Even if my home birth had been with an illegal midwife, even that would not be a reason to assume that I don't have my baby's best interest at heart!</td>
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<b>You</b> assumed that the medical staff would call CPS or similar on you because of a friend's experience with SIDS. The police's job is to treat everyone as if they are guilty, the courts job is to assume they are innocent until proven otherwise. That's the only reason I brought that up.<br><br>
Though, birth, even an uncomplicated pregnancy, can be dangerous, even without interventions. It's not automatically dangerous, and interventions can be dangerous as well, but not having interventions is not a guaruntee of a positive outcome.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">About the spinal taps I neglected to say that the reason they ended up being useless and unnecessary is that both draws were traumatic and compromised, so while a positive result would have been significant, a negative one is considered inconclusive. And yet they weren't about to redo the test, and THAT is what made me wonder why they "had" to do it in the first place. Also, she didn't have a fever or any other sign of infection. Couldn't we have asked to wait on that like you did? (And wouldn't it have been nice if I'd have been able to ask these questions BEFORE they performed the proceedure?)</td>
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Because my DD's O2 sats were good and she wasn't having any problems beyond the fever, that's why they could wait a little bit. The moment a baby's O2 levels start to go down, they get more aggressive. And yes, it would have been better if they had been able to ask you beforehand. I've already stated the communication between you and the staff was poor.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">Also, reflux aspiration with breastmilk is not as serious as w/ formula. The body is more able to absorb it (as it is not perceived as a foreign body as formula is) and aspiration pneumonia is much much much less likely (I'll see if I can find the stat on this but my recollection is practically nil). There was one other point here, but I can't remember what it was. Oh, wouldn't that have shown up on the chest x-ray anyway, it it were significant enough to be a problem?</td>
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Not until it was actually pneumonia. Yes, bmilk is less likely to cause pneumonia, but <b>her o2 levels were going down</b>. Again, that's why they were more aggressive. She was already demonstrating that she was having problems.<br><br>
As I said in the first post, there are things that <b>both</b> sides should have done better. I admit I'm in shock that you didn't know that you needed to wash your hands to go into a PICU. I thought that was just common sense, but clearly it wasn't and so while the nurses had a responsibility to communicate the rules to you, you had a responsibility to <b>ask</b> them the rules as well.<br><br>
From your response here, I'm guessing there was a great deal of defensiveness on both sides. The Drs. may have assumed you were being anti-medicine and you may have assumed they were making judgements about your quality as a mother.<br><br>
I do think you should write a letter, but just be sure it isn't coming off as accusatory (you don't want to put people on the defensive again) and give concrete things that can be done to improve the situation and offer to help them improve those things. That's the best way to affect change.
 
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