Tuesday, August 19, 2014

Testing, Testing, and Tears

So far, my time at home with Coco has been pretty spectacular. Once she got rid of all the amniotic fluid she still had in her when she was born (evidently most of that typically gets squeezed out during delivery, but she popped out so fast that she still had a lot of fluid in her belly, which meant that she did not nurse well at all for the first 36 hours or so) and then figured out how to nurse without grinding my nipples into raw hamburger, the nursing thing has gone pretty well. My milk supply could still chill out a little bit, but I'm not going to complain about that when I know that it would be way kites stressful to have the opposite problem.

Overall, Colette seems like an easy baby--though I told my mom last night that I think a lot of that has to do with us. I felt like Zuzu was a chill baby, but I don't remember us really laying Zuzu down to nap when she was this little--she was constantly held and the slightest squawk would stress me out. This time, Coco has to squawk a little bit if she's put down in the pack & play while Zuzu is getting dressed for school and --guess what--by the time I've finished getting Zuzu ready, Coco is asleep and peaceful, and doesn't protest when I load her up in the car seat.

I'm enjoying the relative relaxation that comes with the second [living] baby--I know we'll figure out nursing, I know I won't always be so tired, I know how fast this time will go by. And while things haven't been perfect (bedtime is kind if a disaster these days), I've been relieved at how easily and enthusiastically Zuzu seems to have transitioned to being a big sister.

Seriously: Today I came in from the kitchen with Zuzu's milk and overhead Zuzu saying "I yove you, Coco." Swear to God. My heart exploded.

BUT (you were waiting for a but, right?), this week has had a few special challenges as well. I can handle explosive newborn mustard poop AND dog poop in the basement AND spit-up in my cleavage AND Zuzu being clingy at daycare drop off AND running out of vanilla Joe-Joe's.

But Monday night things got scary. I got a call from the pediatrician's office saying that Coco's newborn screening came back abnormal and needs to be redone.

Nothing like the phrase "abnormal test results" to make me feel panicky.

The nurse I spoke with was very reassuring and said that false positive results often occur when a baby has had the PKU testing before nursing successfully for 24 hours. She also said that 99.99% of the time, the second test comes back just fine.

(I, of course, automatically start calculating how likely it is for us to be the "0.01%" of people at our pediatrician's office whose false positive is, in fact, not false.)

I try to limit my googling, but I did enough to determine that Coco doesn't have the other symptoms that are typical of babies who have a genuine abnormality--she wasn't low birth weight, her head is not small, she's eating and pooping and peeing just fine.

But you know how it is.

I worry.

The second screening meant that Coco had to have another heel stick today. The pediatrician's office said that my insurance required me to go to a specific lab to have the blood drawn, so I made an appointment for this morning. I dropped Zu at school and then Coco and I headed to the lab.

You guys. It was much worse than I thought.

I don't know what I was expecting--a quick heel prick, a smear on a piece of litmus paper or something?

I did not realize that her heel would get stuck and then SQUEEZED in order to make the blood fill up a vial. While she screamed and cried REAL TEARS. The tech started this process with her asleep in her carseat. Once I realized that this process was going to take FOREVER, I insisted on removing her from her car seat and holding her. Meanwhile, the lab tech is trying to tell me it will "go faster" if she's crying. WTF???

I was practically in tears myself and then the lab tech asked if it was my first baby.
 
I might have been just a little bit snappy when I said no.

So finally it was all over. Poor Coco dozed off in her car seat after I promised her that we would do nothing else but nurse and hang out all day.

We got home and I called David to tell him how horrible it was and to tell him that if I'd known how horrible it was going to be that I wasn't sure I would have taken her by myself and at least it was over and we'd get the results soon.

Instead, I got a call from the lab this afternoon telling me that they DON'T DO the newborn screening that my doctor had ordered.

So they had taken this blood from Coco, run a bilirubin test that she DID NOT NEED and which WAS NOT ORDERED, and now they were calling to inform me that my pediatrician should have sent me to a hospital because their lab doesn't do the newborn screening. (By the way, she's not jaundiced. This is not news. Thanks for NOTHING.)

(I was driving to pick up Zuzu from school when I got this phone call and you better believe I had to PULL THE CAR OVER because I was shaking with rage.)

So I immediately called my pediatrician's office. They were apologetic and said that they had a call in to the lab representative to see why this lab location didn't do this screening.

The only thing I cared about was whether the test would have to be redone. Like can't they just use the same vial of blood?

Of course it does have to be redone. The nurse started to say something about waiting to hear from their lab rep before rescheduling and I interrupted her to say that it made no difference to me if that location did the screening or not because there was no way I was going back there. She was very understanding.

So now I have to take my 11-day-old baby to a children's hospital tomorrow morning to have her OTHER little foot jabbed and squeezed and drained of blood. While we both cry.

And I try not to think about the small possibility that our test results might not be good ones.

What kind of lab tech draws blood for a test they don't do? Why didn't she READ the form before she stuck my baby?

Our pediatrician actually called me himself to apologize and make sure I understood that I won't be charged for this, that I'll have an appointment scheduled at children's hospital tomorrow, and that if my insurance tries to say they won't cover it, that I have the paperwork to say that I tried to go to the lab they work with but they wouldn't do the test. He was also reassuring about not being concerned about the test results--he basically said it's state mandated screening and rescreening if anything comes back funky, and reiterated that she had probably just been tested too early at the hospital.

David wants to call and speak to the manager of the lab. I just want the whole damn thing to be over.

I'm dreading tomorrow's appointment. I don't want to have to cause her more pain.

Even more importantly: I want to get our test results back ASAP and I want her to be okay.

24 comments:

  1. Oh Brooke. I get this, I really do. Cate's newborn screen also came back abnormal and we've had to do not one but several rounds of blood draws in her young life already between the newborn screen, low iron levels and ER visits after she lost consciousness out of nowhere twice within 4 days. Not to mention her first 9 days of life in the NICU. Bleah.
    Not that it makes a difference to you because NO ONE wants their precious new child subjected to this and it's all the worse because you're scared of landing in the crap statistics again, but I promise the squeezing to get blood is worse when the child is older and knows what the hell is going on. And when it's taking for effing EVER to get the damn blood. Or worse, when the staff is on their THIRD goddamn needle poke, still moving the needle around and around her vein trying to get it right while I try and still her writhing, sweaty, terrified body against me, trying in vain to soothe her. (Yeah, this post has brought back some memories...hoo baby.)
    I'm soooo confident Coco is fine. Cate is fine. The days between the test and the results were mildly agonizing, but we'd just come from the NICU which was acutely agonizing and she seemed fine so I was going with that, mostly. I would go with your gut that she's fine too, especially since you had zero red flags prior to that wretched phone call.
    It's inexcusable that the lab took blood for a test they don't even do. Someone DOES need to answer for that and I'm glad David is on it. I must believe that you will someday forget she even had a newborn screen that came back abnormal until someone else you know has the same experience, as I did. Because it just HAS to be that way.

    But I'll be deep breathing with (or for) you through tomorrow and until the results come back.

    Big love,

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  2. Ooo, this makes me mad. To the lab it's no big...not their baby. When we did PGD on Asher a a 3-day old embryo (along with our other two embies), his results came back as a 75% probability of having a sex-linked chromosomal abnormality. Naturally, even though all his fetal screenings seemed normal, we planned to have his cord blood karyotyped. It was in my OB's chart, the pediatrician's notes, and my birth plan. My labor nurse was patting herself on the back for confirming which tube needed to be filled, and which test had to be run. My OB collected the cord blood. Then it sat because no one was sure who should send it down. I made sure it left my L&D room when we did. AND...they ran the wrong freaking test. He tested normal for Fragile X. No shit, Sherlocks. Now he'll need a full vial of veinous blood drawn. I'm putting it off as long as possible because I can't imagine doing that to my poor baby. Idiocy!

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  3. I was coming here to commiserate - how my midwife handled my youngest's newborn screening blood draw, and how I feel I failed to protect / soothe her during that blood draw, is one of my major regrets of her newborn stage. But then I read Julie and Amy's comments, and remembered that you still have to go through it all again - I have nothing to complain about. It SUCKED, I, too, cried. I'm sorry you have to go through that again! And yes, David, *call* that manager because DAMN. Sweet little Coco and YOU should never have had to do this twice. :(

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  4. I am sending so much light and love to you both, I will be on pins and needles until I hear that all is fantastic.

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  5. Inexcusable to draw that lab wrong. But I am confused as to how they could do it wrong. A pku (newborn screen) is done by applying blood to five little circles on a state mandated form. It does not involve a tube of blood. I'm sorry Coco got poked for no reason. Ugh! The hospital lab will be better! It really should be quick. Heat up her heel with a warm pack for five min right before to help blood come easier. And ask for sweetease. It's a drop of sugar water on her pacifier right before poke. Swaddle her up with foot out and put her to breast right after. Hugs!

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  6. OMG!!! I am LIVID for you! Ridiculous! I regrettably switched peds for Matthew (and switched back by 3 months!) The ped I switched too was WAY overzealous with the jaundice testing/heel pricks. Whereas our ped looked over Luke and his coloring and said "eh, he's great, no worries!!" (And Luke even needed a day on lights in the hospital, Matthew never did.) With Matthew the new now ex-ped insisted on testing his levels pretty much down to zero.. I think we had to do 3 heel pricks. I know if we had seen my ped he would have said it was fine with no testing, so I have my regrets too. Poor babies. Poor Mama! :( children's should be great though and I bet she may not even cry/notice. I wonder if that buzz thing they can use to take away the pain from shots(just like a vibrating thing-a Dr invented it on shark tank) would help?? I bet they have them there, you could even ask!

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  7. On my phone and not sure how to link a website but it is called Buzzy and is supposed to help with any needle procedures. I dont see any rrason it couldnt be used with a newborn (vibration and cold). I bet they have one there already.

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  8. OMG. IDIOTS at that lab! Also? Insurance companies and their ridiculous restrictions and rules suck. Poor little Coco and poor you!

    First, I highly doubt this PKU test will come out abnormal again for all the reasons you said (for some reason we learned about PKU extensively in my human genetics class). Second, I have high hopes that the retesting at Children's Hospital will go MUCH better because they are experts at dealing with babies there and handle things just so much better overall (in general).

    Lots of hugs and sending a hundred million good vibes to get through this stuff!

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  9. This is infuriating. I second SweetEaze--Mary had a blood draw from her arm with a needle and didn't even flinch. I think it's like Cabernet for babies. I am certain a Children's Hospital will handle the whole thing better than a lab!

    I bet it's already over by now, but I'll be thinking of you and the results! I am so sorry you have to go through this twice! It is so awful when they squeeze their little feet!

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  10. CoCo is 100% healthy; but I understand "knowing" you fall into the .01%. I've silently followed you since march. Somehow a combo cached Little Bear and Stillbirth search (not together of course, just in my browsing history) brought up your blog.

    Many congrats on colette; and ZuZu is a delight! Having a living daughter myself I appreciate "spirited girls", and ZuZu stories crack me up.

    I could write about my fury at the lab mistake but my heart is weeping that you need any testing at all. Babyloss mamas need a free pass to ANY child health worriesd (do you hear me, Univrse?) so I'll simply say it again: CoCo is 100% healthy.

    PS, if I had your address you'd have the biggest care package full of vanilla JoJos coming your way ;)

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  11. PPS, thanks for sharing your life & stories so freely. If you've gotten a "stalker warning" from blog admin it's me. The early months were survivable only through reading about how others survived. Wow, that last sentence sounds pathetic, huh? But that's baby-loss for you. Thank you thank you thank you.

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  12. OMG queue Mommy Rage! That is absolutely insane! Why didn't they transfer the sample to another lab when they realized they couldn't run that test? Why didn't the stupid insurance company know they couldn't run the test at the lab they made you use?! INSANE. Poor Mommy and poor Coco! Hang in there!

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  13. Both my girls required multiple (as in more than 6, maybe even 8 or 9) heel pricks - all at that lovely lab I'm sure you are referring to - for jaundice. The heel pricks are awful. I didn't even go in, I just sobbed in the lobby. Marcus handles the needles. Their feet were black and blue. Looking back on it, I wonder how we survived those early weeks. We were in lab waiting rooms almost every day, and I wasn't even able to cope with normal things, let alone those heel prick nightmares. Both girls were orange, and the whites of their eyes were dark yellow. It was awful, and all I really remember about those first few weeks, which is sad.

    I love your photos of Coco, and I'm thrilled you are enjoying these moments. I'm living vicariously through your happiness.

    Warming packets really, really work. Use them for 5 minutes beforehand. The good nurses do them without asking, but ask, or find your own.

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  14. Sorry to hear this, Brooke. Since I was had GD in all my pregnancies, George & Henry were both subjected to multiple blood draws. I found what helped was to warm their heels with a warm washcloth prior to the draw as it seemed to get the blood flowing. It's so hard to see them subjected to any pain. My thoughts are with you. Please keep us posted.

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  15. Oh Brooke I'm sorry. Like everyone else here has said some way or another - I too feel certain that Coco is healthy. But this is so horrible that your poor new little baby needed to go through this craziness unnecessarily! Theo had a minor tongue tie, and the stories I have of it being snipped (twice - and apparently through second opinions it wasn't AT ALL needed, EVER!) are horrific... but thank god he'll never remember the pain.

    Theo was also jaundice for over 30 days... and the stress I felt in bringing him in to check his levels and choosing discomfort over waiting it out.. hated it. They didn't poke him, or draw blood... but the act of taking a little babe out and shuffling them into hospitals and appointments and undressing them and having strangers handle them... ugh, my heart. Poor babes

    Theo also slipped out super fast during labour and had fluid in his lungs for a few days, and made this awful pushing noise when he breathed.. and it was SO nerve wracking to hear other mothers who visited us say they'd never heard a new born make such noises...!! ah! The nurses on the other hand were calm and said it was totally normal. But bringing home a baby with excessive fluid in their body somewhere somehow is a bit terrifying! I'm glad to know Colette passed it all!

    I'll be thinking of you guys tomorrow. She's so sweet in that pic. Little sleeping beauty right there <3

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  16. How can they make that mistake? Crazy! And sucky. Big time sucky.

    I am so ignorant apparently and don't recall such screenings, but maybe that's because my babies were either in NICU or dead and therefore had screenings of many kinds done that I just thought were NICU requirements and whatever. Dealing with the NICU twice has definitely given me heart palpitations when it comes to babies and hurting. With Claire I was just counting my lucky stars (that are left) she was alive, but with Benjamin I felt very uncomfortable. Watching him have an EKG and all that nonsense... while I okayed the process, made me so sad.

    Hoping for good news to move on from this and just snuggle away that little lassie.

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  17. I'm sorry you've had to go through this!

    My daughter had the same thing - unclear PKU test and had to have another heel prick (this was after 3 days in the hospital with a UTI).

    Her initial test had come back with a positive marker for Cystic Fibrosis. Scared the crap out of me! I had to wait a whole week to find out that it was, indeed, false. My doctor was barely concerned as he knew she was clearly a healthy baby.

    My friend's daughter had the same thing, and she even had to do the Cystic Fibrosis sweat test. Also came back false.

    LOTS of false positives. So, for whatever those stories are worth...I hope it gives you a little comfort as you wait.

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  18. While my testing experience was not as frustrating as yours, we recently went through this in June with our new baby, Jonathan. His first newborn screen came back 'indeterminate' for cystic fibrosis. We had to wait 2 weeks to hear whether his second came back normal, which, thank God, it did. Statistics were no consolation for me either. I was thinking we would be those people whose first son was stillborn due to complications related to Down Syndrome and whose second son would have cystic fibrosis. Obviously, I would have loved him just as much if the results came back that he did have it, but I am just very thankful we don't have to go through that. I know all too well that there are worse things than a sick child. Will be thinking of you during this trial and hoping for normal results. Lots of love.

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  20. Also, just wanted to add - Coco is absolutely precious!

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  21. First of all, yes to everything Julie said.

    Second of all, I found myself in a rage reading this, wanting to protect sweet Coco and you. Wanting this ridiculousness to end. I mean, enough already! Look at that sweet girl! She is just fine, leave her be.

    I will be thinking of you tomorrow hoping that this time it goes smoothly.

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  22. Oh Brooke. Sometimes I feel like as BLM's that we've already experienced enough, right? We shouldn't have to go through this shit any more. But, alas...it doesn't work that way.

    Thinking about you and hoping that everything is totally fine with CoCo! Do the results come back quickly?

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  23. Poor Coco! Poor you! And I hope David gives that lab the what-for. Just ridiculous to put you in that situation.

    But really, I wanted to comment to say that that last picture of Coco is adorable! What a beauty!

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  24. Oh, Brooke. First of all congratulations..Colette is so lovely..I hope you will get good news very soon, and that she is more than OK.

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