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#1 of 44 Old 06-02-2009, 03:19 PM - Thread Starter
 
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i will probably post lots of questions in the future as I am planning on my first homebirth...I can't TELL YOU how AMAZING it is that there is such a wealth of knowledge here and so much willingness to share! KUDOS to all you amazing moms!!!!

Now to my question: I HATE the heel stick test! It makes me cry! I did some reading up a few months ago from some midwife conference or something...and the question was brought up about using cord blood for the PKU test...and as they studied it further, they actually said this was more effective anyway?

What are your thoughts on the PKU test, and do any of you use the cord blood for testing? That would DEFINITELY be my preference, if that is a
common practice. Our state requires two tests...one in the hospital (if it's a hospital birth) and one a week later. But I think i read that the cord blood test is so much more accurate that only one test is necessary. My son was born in a different state from my daughter, and they only required one PKU test...so I was pretty upset that i had to put my daughter through another one.
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#2 of 44 Old 06-02-2009, 03:38 PM
 
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I saw this on the main forums page and wanted to comment.

From the CDC website, http://www.cdc.gov/mmwr/preview/mmwrhtml/00000243.htm :

"It is now firmly established (7,8,10) that cord blood cannot be used for PKU/PHP screening. Whether or not feeding practices influence the accuracy of screening in the first 3 days of life remains uncertain; it is the opinion of the Committee that this factor is of only minor importance, and the Recommendations should be followed regardless of the feeding protocol."

I have seen a false positive on a PKU that, according to the lab that processed it, resulted from a midwife using cord blood for it. I'm sorry I can't tell you more in regards to why cord blood might affect the results. Maybe someone else can tell you more.

I would stick to the heelstick. You can hold your baby skin to skin during the procedure and nurse if the baby is willing to decrease procedural pain. But IMO, this one is worth doing.

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#3 of 44 Old 06-02-2009, 03:44 PM
 
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I found the same info from the CDC site. I also read on gentlebirth.org that cord blood cannot be used because PKU is a metabolic disorder and blood needs to be drawn from the infant after he has digested mother's milk. It seems like a good idea in theory! I definitely am not a fan of having my newborn pricked with a needle, but my mw does the test and I know she will be gentle. I'm also planning on nursing him while it's done to distract him.

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#4 of 44 Old 06-02-2009, 03:51 PM - Thread Starter
 
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Thank you for clearing that up for me. I don't know where i got confused on that issue. i saved the articles from the gentlebirth.org site...and i just went back and checked...and it said what you said...no cord blood. BUT, I really do remember seeing some other link that said it was OK...but that must not have been accurate, or maybe it was outdated. UGGHHH!!! I was hoping to get out of the PKU test....oh well.
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#5 of 44 Old 06-02-2009, 03:54 PM - Thread Starter
 
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So, how soon (in a homebirth setting, of course) is the PKU test done? If doing it early can be inaccurate (which i guess is why they do two tests), why not just do ONE test, but do it later on...like after a week? What is your general experience with this? One test, or two? Early or later?

Thanks!
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#6 of 44 Old 06-02-2009, 04:05 PM
 
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I opted out of the PKU for both my homebirths. Just FYI.

Stacy - mom to Lily 5-20-06 , Angel, stillborn @ 25 wks 12-17-07 , and Cami 4-21-09.
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#7 of 44 Old 06-03-2009, 04:56 PM
 
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Hello, I just wanted to introduce myself. I have a 13 month old with PKU. I also have a 3 and 3/4 year old who does not have PKU.

It was horrible seeing our almost 4 year old pricked...and, the nurse told us she was going to be high strung, because of how she reacted to the nasty shot...Hello, she just had a horrible pricking...Then, again at the doctor's office. I had NO idea what the blood test was testing and thought nothing could be wrong with our new angel. I just followed traditional medicine and its requirements.

Then fast forward to our next daughter, same newborn blood screening. This time, however, just over a week later, we received notice of the screening results and were rushed to a special clinic for genetic disorders. Because it was diagnosed early, she will have an extremely strict, crazy diet with no serious proteins (black beans, eggs, meat, fish, cheese, milk, etc.) But, will not experience the serious brain damage, skin problems, developmental delays that can occur if the PKU goes undetected. The newborn screening can detect many different genetic disorders. In fact, there are studies suggesting that Sudden Infant Death has decreased because it is likely that several incidents of SIDS were actually genetic defects that slowly impacted the baby's bodily functions and served as silent-type killers.

Anyway, I can appreciate the arguments for and against this testing. And would never judge an individual for choosing one way or the other. I just know with me, I never even understood what was being tested and what a impact early detection can make. Our 13 month old is happy, healthy, just started to walk, babbles up a storm. Her smile melts...and, if we had not done the test or there were no test...our lives would be so different.

Hope this offers some insight. I also want to let folks know that these are very rare disorders, so no one should sit around worry about them. PKU is one of the most common of the "rare genetic disorders" and it is about a one in 10,000 - 15,000 occurence.
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#8 of 44 Old 06-03-2009, 05:44 PM
 
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okay, probably a stupid question, does one's homebirth midwife do this test or would you have to take your newborn into a clinic to get it done? My last child was born at the hospital so I didn't have to think about these things. I don't want to forget anything!
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#9 of 44 Old 06-03-2009, 06:25 PM
 
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I just gave birth last wednesday at home and we did the PKU test. The test was done by our midwife 4 days after dd's birth. I held dd close to me and she was breastfeeding. Midwife did the prick(with a little box type device), dd let go of breast for a second and gave a small protest and went right back to the breast. The midwife gently 'milked' her heel for 4 drops of blood to blot on special testing paper that she dropped off at the hospital. It's not something I liked doing but dd was barely affected by it and the implications if she actually had one of the rare diseases are very serious. We didn't do anything else to dd(no eye drops or vaccines etc), but this is one thing that didn't seem worth the risk compared to the procedure.

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#10 of 44 Old 06-03-2009, 06:32 PM
 
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It is done here between 3 and 5 days and thy only do one. My midwives do it at home while I nurse.

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#11 of 44 Old 06-03-2009, 08:35 PM
 
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Originally Posted by JenniferLS View Post
Thank you for clearing that up for me. I don't know where i got confused on that issue... BUT, I really do remember seeing some other link that said it was OK...but that must not have been accurate, or maybe it was outdated.
The confusion is that people are still using the term "PKU" when what they mean is "newborn screening". PKU is only one of many diseases that is tested for from that same blood sample (depending on your state it could be a test for upwards of 50 different diseases). Some of these diseases can be accurately detected with cord blood but others (like PKU) cannot because they are testing for metabolic errors so the baby needs to eat and begin metabolism before the problem can be detected.
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#12 of 44 Old 06-03-2009, 11:37 PM
 
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metabolic screening which includes many different things including hypothyroidism as well as PKU is not done with cord blood- the very early test probably could be done with cord blood because the metabolic diseases that can be detected before milk feeds like hypothyroidism and cystic fibrosis would be found but since the screening is for all the diseases in a list your state thinks is important to look for and PKU and several others cannot be found by using cord blood it is not considered approprate to use cord blood as it could give false negative results-
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#13 of 44 Old 06-04-2009, 02:09 AM
 
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Originally Posted by jsinaz View Post
Hello, I just wanted to introduce myself. I have a 13 month old with PKU. I also have a 3 and 3/4 year old who does not have PKU.

It was horrible seeing our almost 4 year old pricked...and, the nurse told us she was going to be high strung, because of how she reacted to the nasty shot...Hello, she just had a horrible pricking...Then, again at the doctor's office. I had NO idea what the blood test was testing and thought nothing could be wrong with our new angel. I just followed traditional medicine and its requirements.

Then fast forward to our next daughter, same newborn blood screening. This time, however, just over a week later, we received notice of the screening results and were rushed to a special clinic for genetic disorders. Because it was diagnosed early, she will have an extremely strict, crazy diet with no serious proteins (black beans, eggs, meat, fish, cheese, milk, etc.) But, will not experience the serious brain damage, skin problems, developmental delays that can occur if the PKU goes undetected. The newborn screening can detect many different genetic disorders. In fact, there are studies suggesting that Sudden Infant Death has decreased because it is likely that several incidents of SIDS were actually genetic defects that slowly impacted the baby's bodily functions and served as silent-type killers.

Anyway, I can appreciate the arguments for and against this testing. And would never judge an individual for choosing one way or the other. I just know with me, I never even understood what was being tested and what a impact early detection can make. Our 13 month old is happy, healthy, just started to walk, babbles up a storm. Her smile melts...and, if we had not done the test or there were no test...our lives would be so different.

Hope this offers some insight. I also want to let folks know that these are very rare disorders, so no one should sit around worry about them. PKU is one of the most common of the "rare genetic disorders" and it is about a one in 10,000 - 15,000 occurence.
Thanks for sharing that. I know a lot of us opt out of a lot of the interventions, but the metabolic screening test is something I would never pass up. It's a moment of discomfort for the baby (and honestly, my babe objected more to getting his footprint taken than he did to the heel stick) but it can prevent a lifetime of severe brain damage. Beyond a few seconds of discomfort, there are no real risks that I've heard to the test.
My midwife warmed up my baby's heel, and I nursed while she did it. It really wasn't bad at all.

Jen, journalist, policy wonk, and formerly a proud single mama to my sweet little man Cyrus, born at home Dec. 2007 . Now married to my Incredibly Nice Guy and new mama to baby Arthur.
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#14 of 44 Old 06-04-2009, 02:10 PM - Thread Starter
 
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THanks for EVERYONE'S perspective on this...VERY HELPFUL! I will definitely think of it more seriously than simply another horrible thing they do to my child!

First of all, I finally met my midwife yesterday! She said that she does not do the PKU test...too bad, I wish that she did. But, she also said two things that I hadn't heard before...and they seem too simple to be true...
what do you think?

First of all, she said that they used to simply test the urine for PKU. I don't know how easy it would be to test urine from a diaper. But she's been an RN for over 30 years, so I assume she's telling me the truth.

Secondly, she said that if BOTH parents are negative for PKU, then the baby won't have it. That definitely sounds simple...but maybe for the parents it's more than just a blood test for PKU, maybe it's a genetic test...does that make sense?

Thanks!
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#15 of 44 Old 06-04-2009, 02:21 PM
 
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They did used to test urine, but I think this has mostly been abandoned as it is not as reliable for determining results. The other thing you should look into is what is ran along with the PKU in your state. Most places run a pretty full panel of not only PKU, but also a multitude of other disorders. I know here in NV, it is PKU and 7 or 8 other things. So if anything, take a little comfort in knowing they aren't just testing your little one for one thing. If it was just PKU, I would be more likely to decine, but since it is other life threatening disease, I feel a little better about it.

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#16 of 44 Old 06-04-2009, 03:36 PM
 
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I guess to be clear no PKU is a bit more complex than that- and the other thing is that if both of you have recessive genes for the other 30-50 metabolic diseases that could be screened for with the heel stick tests your baby could go undetected - the thing of it is many of the metabolic disorders can be treated simply and that the screening is just a screening after that there are diagnostic tests to confirm/make a diagnosis - probably the most prevalent one locally is hypothyroid and left untreated makes for developmental delays and adds health risks when just giving a baby some thyroid replacement med would be protective--- I have run across this one in 2 clients and none of the parents had thyroid issues --- the health department of your state will have a brochure with the full info and can tell you where to get the screening done if your midwife doesn't offer it.
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#17 of 44 Old 06-04-2009, 04:26 PM - Thread Starter
 
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thanks...and that clears a lot up. i was never told that the PKU tested for anything other than that. However, my midwife did say that she takes the cord blood to test for all kinds of other things, like thyroid, etc. i guess I just need to ask my pediatrician exactly what is tested, etc. I at least feel better knowing that by doing a homebirth, I bypass the PKU test in the hospital...so I can just do one test, instead of two. My youngest had her second PKU done in the lab. The first, in the hospital, obviously without me there. I think next time, if it's my only option, I will take my baby to the lab, but INSIST that they let me hold him/her. Last time they just held her down on the table. It was UNBEARABLE! Or maybe i should just find a better lab tech!
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#18 of 44 Old 06-05-2009, 11:54 PM
 
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Secondly, she said that if BOTH parents are negative for PKU, then the baby won't have it. That definitely sounds simple...but maybe for the parents it's more than just a blood test for PKU, maybe it's a genetic test...does that make sense?
Just want to reiterate what other posters have said -- you and your partner may both be PKU negative (or negative for any of the other metabolic disorders it tests for), but you could be carrying recessive genes that could make your child positive.
You could ask your pediatrician if they do the test. They'd probably be okay with you holding or nursing the babe while they do it. And tell them to warm up the heel -- it makes it a lot easier.

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#19 of 44 Old 06-06-2009, 01:10 AM
 
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My baby was born at home, and we went into the hospital for the PKU test when she was about 10 days old.

(But I had a tear that healed on its own, and my midwife didn't want me climbing stairs for 5 days or so, and then it was the Christmas holiday... this is why we waited 10 days. If dd was born in summer and I hadn't had a tear, we might have gone in sooner.)

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#20 of 44 Old 06-06-2009, 04:09 AM
 
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Secondly, she said that if BOTH parents are negative for PKU, then the baby won't have it. That definitely sounds simple...but maybe for the parents it's more than just a blood test for PKU, maybe it's a genetic test...does that make sense?
This is not true. Both parents can be carriers and pass it on to their children (like in the case of my best friend and her parents).

I also want to say that I appreciate the comments weighing the discomfort of the heel stick with the knowledge of some very serious conditions that need detection. As I read your comments, I thought about how much my little girl hates diaper changes. I wouldn't dream of not changing her diaper since it causes her discomfort when I know that the risks are real if I don't change it.

M.Ed. Mama to Chunka (1/07), Beauty (5/09) and Elizabear 3/12): Birth Doula (working toward certification) AAMI Midwifery Student, Advocating with Solace for Mothers & The Birth Survey

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#21 of 44 Old 06-06-2009, 10:24 AM
 
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You could ask your pediatrician if they do the test. They'd probably be okay with you holding or nursing the babe while they do it. And tell them to warm up the heel -- it makes it a lot easier.
This might vary by state, but my MW's told me that most pediatricians don't/can't offer this test. I don't remember why, though I'm sure they told me. However, in some states you can get a test kit for free from the state or county government - or your midwife can. They charge for it in the hospital.

I had to do some serious bullying of the nursery nurse in the hospital about this test. She first insisted that the test had to be done in the nursery because "all our equipment is there." I raised my eyebrows and said, "I believe the 'equipment' for a PKU test is a needle and a card. Are you honestly telling me that those two items are not portable?" She stormed out, came back with the needle and card, then insisted that the baby had to be in her bassinet, unswaddled, and flat on her back in order to do the heel prick. I asked nicely for an explanation of the medical necessity for this, and she said, exasperated, "because you have to put her down sometime!" So I just fixed her with a steady glare and said, "I'm sure that's true. However, 'sometime' does not have to be the first time anyone sticks my newborn with a needle. If there is no medical reason to do otherwise, I'm going to ask you to attempt to prick her heel while I'm holding her." She huffed in frustration and said, "I'll try." (She's lucky I didn't throw her out and say, "go find someone competent enough to do it without 'trying.'")

All of this is to say, just because they do hold the poor child down on a table in a separate room to get the heel prick, doesn't mean there's any particularly good reason to do so. Fight them on it, if you have to, until they give in. You have the information, and the right!

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#22 of 44 Old 06-06-2009, 11:07 AM
 
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We took our babe to the ped afterward for the PKU. For me I certainly don't enjoy my baby getting pricked, but honestly neither one has shown much if any discomfort- plus it tests for so many things.

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#23 of 44 Old 06-06-2009, 01:31 PM
 
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I've had five babies, and all of them have had the PKU test. With my first, it was horrible. I wish I had researched it ahead of time because 1) I would have refused the test at two days and waited until 1 or 2 weeks, and 2) I would have made them do it properly. They held her foot while they pricked her and then squeezed the heck out of her foot while she screamed and I cried. With #2 (and #3, #4, and #5), a very warm, wet washcloth was wrapped around their foot and leg for several minutes (which draws the blood to their foot and makes them bleed easier), then they were pricked. Not a tear from any of the four - #3 slept through it. #4 and #5 nursed through it, and they were fine. Like others have said, insist on holding and/or nursing your little one during the test, and don't let them do it without first warming the leg and foot with a very warm, wet wash cloth. It makes a HUGE difference.
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#24 of 44 Old 06-06-2009, 06:01 PM - Thread Starter
 
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I can see from most of the posts on this thread, that most of you do value the PKU test...I appreciate that so much, because for my first two children, I was never really explained the seriousness of this test, and the only time i started to question was when my daughter was born, they required two PKU tests, and that made me so mad! (especially since this wasn't required for my first, so I couldn't understand the medical difference and the only explanation I got was that the state required it...not good enough for me, of course). But now I'm understanding a lot more and THANK YOU!

I'm wondering if I could somehow convince my midwife to do it...OR...if this is a stick test like for glucose or something...couldn't we draw the blood ourselves, at home? and then take it to a lab? I mean how would that be different from the midwife doing it and taking it to a lab...I guess that's my question.

Another thing, our pediatrician usually just uses the hospital lab that they are connected with. If that lab tech won't let me hold the baby, and won't warm up the foot, be as gentle as possible, etc...what should my options be? Should I just leave and say, well, I'll find someone else to do it? Or do I just suck it up and watch my baby suffer through it?
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#25 of 44 Old 06-06-2009, 08:50 PM
 
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It actually takes quite a bit of skill to do it right, I don't think it's something you can learn nor you would want to do it on your baby. It requires much more blood than a glucose test. I think in most places it is 5 very large drops whereas the glucometers need barely anything. Then the blood has to be applied to the card in a particular way; if you get too much, too little, put it in the wrong place, scratch the paper, touch the heel to the paper... you will ruin the sample and have to repeat it. It's also not something you would want to "convince" your midwife to do if she doesn't know how. This is the reason a lot of doctor's offices don't do them - the nursing stuff doesn't have a lot of experience doing the test (since it's usually done in the hospital), and it can take a while to get the hang of it. This is also the reason that the nurses want to do it in the nursery; if you have no experience with getting the sample with baby in mom's arms it can make it very difficult if baby starts kicking and flailing. It could be argued that it's actually easier on the baby to let them take him or her to the nursery where they can do it efficiently as they're used to rather than having them bungle it up with the baby kicking his legs in mom's arms.
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#26 of 44 Old 06-07-2009, 01:42 AM
 
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Take your own heal warmer and tell them you will hold the baby on your shoulder while they do the test. This will make it faster because of gravity. make sure you nurse like crazy before the poke so she is well hydrated.
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#27 of 44 Old 06-07-2009, 01:48 PM
 
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Another thing, our pediatrician usually just uses the hospital lab that they are connected with. If that lab tech won't let me hold the baby, and won't warm up the foot, be as gentle as possible, etc...what should my options be? Should I just leave and say, well, I'll find someone else to do it? Or do I just suck it up and watch my baby suffer through it?
I would stay calm but keep repeating, "I will hold my child during the procedure and you can perform the test after her leg and foot are warmed." They may try to bully you, but I would be willing to bet when you don't budge, they'll give in. Probably, they won't give you a hard time - I mean, I doubt they're going to want to make it a hard procedure for your baby.
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#28 of 44 Old 06-07-2009, 03:35 PM - Thread Starter
 
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AWESOME advice from everyone! THANK YOU SO MUCH!!!
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#29 of 44 Old 06-07-2009, 11:32 PM
 
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Originally Posted by JenniferLS View Post
Another thing, our pediatrician usually just uses the hospital lab that they are connected with. If that lab tech won't let me hold the baby, and won't warm up the foot, be as gentle as possible, etc...what should my options be? Should I just leave and say, well, I'll find someone else to do it? Or do I just suck it up and watch my baby suffer through it?
You can warm the foot yourself on your way in with a rice sock or one of those hand warmers that hunters use. It doesn't matter right or left foot, so just pick one and warm it up. That way you don't even have to ask them to do that. And then just ask them if you can hold your baby. Overall, it is a quick test. I wouldn't argue much with the person doing the test about how they do it because if they have a hard time doing it then it will become a LONG test. However, you could ask for someone else to do it who might be able to help you in your way. For example, I cannot poke a baby in the correct spot if they are upright... they have to lay down and then the mom can pick up the baby after I poke the foot. If I were to try doing it the other way (and I have) I will get the position of the pokes all wrong and then the poor baby won't bleed and I will have to do it again rather than just getting it right the first time.

Erika, mama to three beautiful kids (plus one gestating), and wife to one fantastic man.

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#30 of 44 Old 06-08-2009, 10:31 AM
 
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Are there really people out there trying to poke babies without warming their heels first? That's the recommended way, included in every training I've ever been to. Only difference is that the hospitals and doctor's offices use special disposable heel warmers whereas I use a bowl of warm water or a diaper.
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