Kids

Kids

Rebekah has become very fussy/frustrated when I try to nurse her lately. On Tuesday, I finally decided to quit driving us both nuts and I started pumping. I am currently pumping around 12oz of breastmilk daily. She will nurse some overnight, but she takes a bottle very well at any hour, so whatever it takes at this point. 

I am also currently supplementing maybe 8oz with Meyenberg powdered goat milk, as I work at building my supply. 

I hate pumping. The hum of the pump mrrrrr mrrrr…starts sounding like a cow to me. And I scowl at it. When I’m home, I now pump 5min on each side and take a 30 minute break, and repeat. And repeat. And repeat. 

I have a new found compassion for women who gave up breastfeeding. This is my fifth baby, and I never had a problem with my other four EVER. Not at all. 

They were fat and healthy and born pros at nursing. I get it now. I get it. Oh my lord, how does anyone work this hard at sticking with nursing for more than 3-4 days?

I hope I don’t give up. Don’t let me. 

My brain has these movie quotes tumbling around in my head. 

I have nipples, Greg. Could you milk me?

Little…little Gepetto. That’s what we named him. Into a little saucer. 

Are there many farms in Detroit, Greg?

You never told me about your cat-milking days in Motown. 

Mrrrr mrrrrr mrrrr. Either you know exactly what I’m feeling here or you don’t know at all. I don’t think there’s much middle ground. 

So while I build my supply, I’ve been reading about supplementing with a homemade raw goat milk formula

I was particularly intrigued by goats raw milk because it contains thyroid hormones t3 and t4. See also–study about thyroid hormones in goat milk

  
Which, human breastmilk also contains these thyroid hormones, but if I’m going to have to supplement with something until my supply fits her demand. I’m most intrigued with raw goat milk.

Sweatpants. Messy bun. Call me Milkbags. 

  

Rebekah Ruby Kate
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Rebekah update: Congenital Hypothyroidism 

Rebekah update: Congenital Hypothyroidism 

“Theirs not to make reply,

Theirs not to reason why,

Theirs but to do and die:

Into the valley of Death

    Rode the six hundred.”

(“The Charge of the Light Brigade,” Tennyson)

 

Liberty Leading the People, Delacroix
 

I’ve had some people ask for an update–Rebekah has an appointment on May 16 (earliest available) with a new pediatrician for a second opinion. 

She was diagnosed with congenital hypothyroidism over the phone at 4 weeks old. She was prescribed Synthroid, which we chose not to pick up or give her. She weighed 5lbs 10oz at birth, and she’s currently 7lbs 7oz at 10weeks, 5 days old.

We called to reschedule her appointment with the first pediatrician for a few days later because of a conflict. The nurse flipped out. She talks over us, doesn’t listen whatsoever, and this last time threatened to report us for neglect. 

Hang on, let me make some room in my pending lawsuits file. 

This is a decision that is going to affect Rebekah’s quality of life for the REST of her life. No, I’m not going to be forced to make it under coercion and fear tactics and threats. 

I’ll post about how it goes with the new pediatrician some time after May 16. 

ANALYTICAL BY NATURE

I don’t write or share life experiences to make sure everyone stays comfortable or to hope that everyone agrees with me. I’m also not stirring up controversy for the sake of controversy, hoping that people will join forces against me to get me “back in line” with popular opinion. I’m also not hoping to win anyone over to “my side.” Life is not red rover. 

It doesn’t rattle me when I feel attacked; I’ll listen to them, but I will always look for intentions and motivations. Are they trying to justify their own choices? Trying to convince me for the sake of convincing? Or…is this genuine concern?

I like to hear it all. And if someone gets pushy, I can go toe to toe. That’s never been a problem for me. But there are shy people, who have concerns similar to mine on many issues,  and they would never be comfortable getting attacked, so they send me quiet support. 

Why then? Why do I share?

I have a very genuine, very real desire for answers that convince me to take action or not take action. I have huge choices to make for myself and for my children, the people who matter most to me. 

Also, I am analytical by nature. I am unconventional in many of my personal choices, especially health choices. I own the right to be, and I don’t mind reminding anyone who steps into my space or acts like I don’t own that right. 

“You don’t have to love me; you don’t even have to like me, but you will respect me…” (“Bossy,” Kelis)

When something happens in my life that opposes the beat of my own heart, I don’t easily accept it. And I ask–why? 

And I want proof. I don’t want regurgitated, unsubstantiated fear-mongering. I want actual proof. 

And I look up what information I can find on both sides of the issue. And I look for controversy among the experts. And I ask-why? 

And I look for the source of the studies. And I look for the changes and trends over the years in treatments and diagnoses. And I ask–why?

And I’ve never minded being a gadfly. And I don’t mind now. And again I ask–why? 

PERSONAL BACKGROUND

Rebekah (born February 15. 2016) was diagnosed over the phone with Congenital Hypothyroidism when she was 4 weeks old. More about that, here.

Her TSH was 38.56 at 4 weeks of age; T4 free was 1.21. I read that TSH often spikes after birth, especially in newborns with lower weight. The nurse didn’t know the appropriate ranges for Rebekah’s age, and yet…she told me that Rebekah was very out of normal range for her age. Oh? But we don’t know normal range. The doctor prescribed Synthroid and they said she would be referred to a pediatric endocrinologist. 

I had a hard time finding the appropriate ranges myself. I found this chart that lists ranges, but to be honest, I don’t know what the “n column” refers to…I assumed the number of subjects tested in each age group…to determine these percentiles. (A few people confirmed to me that the “n column” is the number of test subjects.) 

So I don’t know if this chart is just a graphic from one particular study of levels or what. I hope so. I hope this isn’t the standard or accepted chart for “normal ranges,” because it’s not based on many test subjects, especially ones under 1 year. 

But if someone knows (or finds) the “normal range of TSH” for different ages of infants and children, send that my way. PLEASE.

  

The nurse said Rebekah needed to start treatment immediately because brain damage and mental retardation are linked to congenital hypothyroidism. Again, I was given no proof or evidence of this scary threat. 

When I looked up congenital hypothyroidism, the only evidence of brain damage I could find were severe cases from other countries or from our country from decades ago–when the diagnosis was made based on seeing actual symptoms in the baby’s appearance and behaviors and not on TSH and T4 numbers only. What were the levels of TSH and T4 for these severe children?

I couldn’t find that answer either. But I did find several parent forums where they discussed their children’s levels at different ages, and I saw them post TSH numbers in the hundreds and even over a thousand. And they posted crazy numbers before AND AFTER their kids were on Synthroid. Because the crazy numbers don’t stop with Synthroid. 

It’s very different to compare numbers of babies and children with adult numbers. And as I found in my reading, lower birth weight babies (and large babies) have very different hormonal profiles than average weight babies. 

CHOICE

I had to make the choice about whether or not to start Rebekah on a fake hormone for life. So I looked up information and questions that I had. 

I wondered if introducing a fake hormone would cause an internal fight between her thyroid hormones (because she did have them) and the artificial one. I had heard of people who had to have their thyroids killed. If her natural gland has a chance of normalizing on its own…I want to give it that chance. 

It’s very different to make the choice to start a newborn on Synthroid or for an adult to make that choice for himself. Brain damage was threatened. Yes, that sounds incredibly scary. Precisely why I’m so hesitant to start her on this DURING her brain development years. 

An adult who chooses to take Synthroid has a brain that has finished developing; their bodies have finished growing, they’ve gone through puberty, and in some cases maybe even through menopause before they start the fake hormone. They can also TELL people if they notice improvements or bad side effects. 

I wanted to read the stories of the people who had BABIES on Synthroid for life. Was it a miraculous experience for them? They are the ones who live it.

So I found plenty of stories. And I read them. And I dug deeper. 

WHAT CAUSES THYROID DYSGENESIS?

I was told that her thyroid levels were most likely out of range because her thyroid was misshapen or missing. 

What causes that to happen?

I was also told that since the start of screening newborns, the diagnosis of CH has more than doubled. 

Why would the numbers double? 

After reading, I got the sense that the experts don’t know. And also…that they don’t think the cause matters. 

As a parent of a child they are wanting to diagnose with this, the cause matters to me.

Why isn’t her thyroid functioning properly? What are the reasons her levels might be off? Did IUGR (intrauterine growth restriction)or low birthweight play a role in throwing her numbers off? Are there ways to improve thyroid function? (Instead of simply trying to take over its function by administering fake hormones and then altering that dosage for the rest of her life as she grows and changes.)

I’ve included some quotes from Congenital hypothyroidism, by Maynika V Rastogi and Stephen H LaFranchi–

“In iodine sufficient countries, 85% of congenital hypothyroidism is due to thyroid dysgenesis.” 
 

“…an exact cause for the vast majority of cases of thyroid dysgenesis remains unknown. This has not been a significant issue, however, as management of CH is based on restoring thyroid function to normal, not necessarily knowing the exact underlying cause.”

“It should be borne in mind that an underlying etiology may not be determined for many cases of CH.”

  

“Congenital hypothyroidism is classified into permanent and transient CH. Permanent CH refers to a persistent deficiency of thyroid hormone that requires life-long treatment. Transient CH refers to a temporary deficiency of thyroid hormone, discovered at birth, but then recovering to normal thyroid hormone production. Recovery to euthyroidism typically occurs in the first few months or years of life. ”

“Prior to the onset of newborn screening programs, the incidence of congenital hypothyroidism, as diagnosed after clinical manifestations, was in the range of 1:7,000 to 1:10,000 [1]. With the advent of screening of newborn populations, the incidence was initially reported to be in the range of 1:3,000 to 1:4,000 [2].”

“A recent report showed that the incidence in the United States increased from 1:4,094 in 1987 to 1:2,372 in 2002 [5]. The reason(s) for the increased incidence is not clear, but one possible explanation may be a change in testing strategy. ”

It is not clear whether the congenital hypothyroidism in preterm infants is transient or permanent.”

So many unknowns and so much vague information. The experts freely admit so much of the information surrounding the disorder is still unclear, and also…that it doesn’t matter. And that is supposed to ignite my trust?

CONTROVERSY

Controversy existed in my own heart and head the more I read on this topic. Did controversy exist among the doctors and experts?

I looked–

Remaining controversy centers on infants whose abnormality in neonatal thyroid function is transient or mild and on optimal care of very low birth weight or preterm infants.” Update of Newborn Screening and Therapy for Congenital Hypothyroidism

Were there studies/articles that discussed the Correlation of congenital hypothyroidism with birth weight and gestational age in newborn infants? Yes, there were. 

Congenital hypothyroidism rates–

low birth weight infants 1/575

normal weight infants 1/1,505

macrosomia 1/473

“The prevalence of low birth weight infants and macrosomia was significantly higher than that of normal weight group (P<0.01).”

“CONCLUSION: The prevalence of CH is associated with the birth weight and gestational age…

Do babies with different weights have different hormone profiles? Growth hormone levels in relation to birth weight and gestational age.

“The study was done to evaluate the growth hormone profile in relation to birth weight and gestational age. There was statistically significant difference in the cord blood growth hormone levels between babies weighing > 2500 gms (28.1 +/- 12.83 ng/dl) and low birth weight babies (76.8 +/- 55.7 ng/dl).”

Growth hormone levels were higher in preterm babies and low birth weight babies as compared to term babies weighing > 2500 gms…”

Did any experts think Congenital Hypothyroidism was overtreated? And did they find that the over-treatment  during early life was worse than under-treatment?

Overtreatment of Congenital Hypothyroidism in the First Two Years of Life May Result in a Worse Cognitive Outcome Later in Childhood than Undertreatment, Rosalind S. Brown, Clinical Thyroidology

Overtreatment in the first 2 years of life as reflected by the free T4 concentration is more detrimental to later cognitive outcome than undertreatment. The rapidity of normalization of serum thyroid hormone and TSH levels, though associated with a short-term benefit, is not associated with a sustained improvement in neuropsychological performance later in childhood.”

“This provocative study should cause us to pause and reconsider what constitutes optimal therapy for babies with congenital hypothyroidism…”

“I await with interest data concerning the long-term neuropsychological outcome of babies treated with a higher initial l-thyroxine dose (12 to 17 μg/kg/day) as advocated by some (1). Only when these data are available will it be possible to decide more rationally what truly constitutes optimal therapy in babies with congenital hypothyroidism.”

I can’t help but feel that the above quote^^ sounds very dehumanizing. Let’s keep recommending this, and then wait and see what happens to the babies…and we can always change our minds if the data continually proves the treatment is detrimental. 

Detrimental to whom? That data is people. That data is my baby. I have a right to hold my hands up and ask people to step back.  I’m not crazy about having the nurse threaten to call report us for child neglect over this, but I’m also not about to just sit down. 

The last thing I’m doing is neglecting this or neglecting Rebekah. Call them. Come on over. I’ve been wanting to do a local news interview anyway. This isn’t the first time someone wanted to have control over my decisions and probably won’t be the last. 

Now this next article is about adult hypothyroidism, but it also shows there’s a lack of concern for CAUSE, and it offers some answers to similar questions–Is Hypothyroidism Overdiagnosed And Overtreated?

“…at no time did any of these researchers account for the numerous reasons why people have low thyroid symptoms in the first place. The only things they are accounting for are: 1) TSH levels and 2) T4 levels.”

ALTERNATIVE TREATMENTS

After Rebekah is tested again, if her numbers are still out of range, I am going to ask about natural dessicated thyroid hormones (NDT).
T4-only meds like Synthroid do NOT work, exclaim many patients!

I found that the reviews and information about NDT definitely caused me to be more interested in this treatment than the info I found on Synthroid. 

“Did you know that a healthy thyroid makes five hormones?? They are T4, T3, T2, T1 and calcitonin.”

“T4, also called thyroxine, is simply a storage hormone meant to convert to T3, the active hormone. But a healthy thyroid doesn’t make you totally dependent on conversion alone, and also gives you a certain amount of direct T3 plus the other hormones above. So in other words, being on a T4-only med means you are missing out on direct T3 as well as the compliment of all five hormones. Also, calcitonin is a hormone that helps keep calcium from leeching out of your blood.”

QUOTES FROM PARENTS

Do you have a baby with congenital hypothyroidism?

Keep in mind, these kids are ALL ON SYNTHROID, and all of them started it very early. Doesn’t sound miraculous and easy on the babies/kids to me. 

  
“My son has almost completely quit eating in the past few weeks. I could literally hold in one hand the amount of food he has actually eaten in that time frame. …My boy is such a little guy already and I feel like he has definately lost some weight.”

“my little guy has been poked and prodded so many times in his short life…

…the older he got the harder it would be to distract him from the inevitable.”

“We were concerned about my son’s ability to walk because he would fall so much. It was like his little leg would just give out on him or he would drag his leg and that would cause him to fall.”

“It was a tough first year with all her eating problems.”

“My son just turned 2 and he was also born with hypothyroid,he was diagnosed at birth and been taking his synthroid since he was a week old,he walked when he was 14 months but everything else is real delayed he still dosent talk or say a word,he has all the signs of autism,hand flapping,no speech,seems like he is in his own world all the time,his endocrine said if he takes all of his medication everything would be ok,which i believed…”

“…his endocrine doctor told me it shouldnt have anything to do with his ch as long as hes been taking his medication everyday,which he has,i noticed when my son was about 3 months old he always had this glaze in his eyes i thought it was due to the synthroid,i am in contact with the other mother thats son has hypothyroid to in his therapy class,and they act very much the same way and thier foreheads are much wider than normal for some reason,his endocrine told her the same thing as long as he takes his meds everything should be alright…”

“My mom commented that his little eyes didn’t look right. She said they had a glazed look to them. He also kept his little tongue stuck out all the time. ”

“Her levels where a little high this time her TSH was 9.5 which has been the highest since she was born which it was 378.9”

“My sons levels at birth were 489.8…”

“I’m missing out on my daughter from all the worry and don’t get me wrong i love her to bits i really do but so frightenened of the whats going to happen…”

HOW I FEEL

I feel like I’m holding back an angry mob. That’s how I feel. 

I feel like everyone in the mob has a pill and/or a needle. 

Maybe I shouldn’t feel that way. 

But…there it is. That is how I feel. 

  

And I’m thinking about trying out some new makeup ideas.

 



MY ONLY COMFORT

I have to recenter myself several times a day. 

  

Rebekah Ruby Kate, 10 weeks

Congenital Hypothyroidism 

Congenital Hypothyroidism 

I received a phone call early on Friday morning, March 18. This was the call with the results from the second test. Keith was at work. My oldest three daughters at school. I was home alone with Clara (2) and Rebekah (4.5 weeks).

I stood there in my pajamas and tried my best to remember all the high points, so that I could learn more about everything I was being told–Primary Congenital Hypothyroidism. Synthroid. Brain damage. Daily prescription for life. Referral to a pediatric endocrinologist at a Children’s Hospital 2.5 hours away. 

Rebekah’s newborn screening, done when she was exactly 7 days old on February 22, had had an abnormal result for her thyroid function. 

On March 10, the state nurse had called me because she said my pediatrician’s office told her they couldn’t reach me. The day she called and left a message saying the initial newborn screening had abnormal  results was–Audrey’s 11th birthday, and also cheer tryouts day for Margaret and Hazel; I’m not surprised I missed the call(s). 

I listened to the voicemail late that night and barely slept, called her back the next morning, March 11. The state nurse told me that there were often elevated numbers that ended up being “false positives” after further testing. So I tried not to be too worried.

We had a more conclusive test done on Rebekah’s thyroid on Wednesday, March 16. The doctor explained the basics of TSH and T4. 

So during my phone call with the pediatrician’s nurse on March 18, I asked what her test results were and what prompted them to prescribe Synthroid. I wrote this down–

TSH 38.56

T4 free 1.21

I asked for the numbers from the newborn screening as well, but apparently they weren’t handy. I asked if I could have all of Rebekah’s lab results mailed to me. I was told I would have to come and sign a medical release in person; though I was positive that I had filled one out at the first visit. But okay. 

This… 

 
I was being told–we believe your baby has this condition. I was told in this one phone call–her results indicate primary congenital hypothyroidism. I was also told–this is not something babies “outgrow” over time. 

They did not assess her for symptoms. They did not ask me if she had any of these symptoms. They based their decision to prescribe a lifetime prescription on her test. 

So I start looking up the symptoms…besides her thyroid numbers they’ve given me…

  

Hm…no. She doesn’t have ANY of these symptoms. Maybe I’m being biased somehow? I start comparing photos of babies with the condition to photos of my baby…

Rebekah on the left

Some websites said most babies with primary congenital hypothyroidism would start showing signs around 3-4 weeks old. Some sites said babies may show no signs.

Okay well 1 in 4000 babies is diagnosed with this disorder. There are about 4 million babies born in the US yearly, so that’s about 1000 newborn CH diagnoses a year. I can’t be the only one who has ever asked questions. So I start searching out more information from scholarly articles and parent forums. 

The words “BRAIN DAMAGE” were used on the phone with me. What mother wants to hear those words? And I was told, she is being prescribed Synthroid and being referred to a pediatric endocrinologist. 

Yes I understand that thyroid function is necessary. But I also understand science, and I would like proof of brain damage that they are threatening she will develop. Where are the recent statistics from our country that prove brain damage is imminent? 

I’m not talking about photos and studies from iodine-deficient countries. Or studies from the 1970s and earlier (when the subjects were diagnosed because they actually manifested CH symptoms and not diagnosed by this screening.)

I cried. Right there on the phone with the nurse. Are you serious? Are you sure? What else can cause this result? And it never changes? I don’t want her on a prescription medication this young, definitely not FOR LIFE. I need more information and proof that this is the only option. 

Synthroid (Levothyroxine), I searched user reviews and the listed side effects…

  
Sure. Most of these side effects are listed as rare. But here I have this tiny, perfect little newborn daughter…who has no visible symptoms of this disorder, and who is happy and healthy. And I am supposed to want to give her this drug…for LIFE? Starting immediately.

She had two very fussy weeks, week 6 and 7. But besides those 2 weeks, she’s content, alert, pooping once a day, peeing several times, nursing happily, smiling social smiles at her family, reaching developmental milestones, gaining weight…not as rapidly as they want her to, but she’s gaining. 

I thought people with hypothyroidism had trouble LOSING weight. 

If she took Synthroid and had some of these bad side effects, most of them…she wouldn’t be able to tell me. And clearly listed side effects were–weight loss and growth and developmental delays in children. 

I should give her this drug why? To improve her thyroid numbers only. Is that even a guarantee? 

I searched–Does Synthroid, always improve TSH levels? No, it doesn’t.  I found this article, which states–

“Persistent elevation of TSH levels in patients under treatment for hypothyroidism is a relatively common clinical problem in endocrinology practice.” (How do You Approach the Problem of TSH Elevation in a Patient on High-dose Thyroid Hormone Replacement?)

  
So. The ONE and only “symptom” she has–elevated TSH, may or may not go away…even if she takes Synthroid. And, she could have any of these other listed side effects. 

I just…I need some time to process.

It seemed like most user reviews of Synthroid were adults who talked a lot about how it helped them with weight loss. I’m not saying these adults don’t need or benefit from the drug. I am saying–the last thing Rebekah needs…is weight loss. 

Rebekah was 5lbs 10oz at birth even though I had her at 39 weeks and 6 days. My other daughters were 7lbs 14oz, 8lbs 8oz, 7lbs 6oz, and 8lbs 4oz. So Rebekah was small for one of my babies, and I have been working so hard to help her GAIN weight. 

Rebekah had velamentous cord insertion, which can cause delivery complications and a low birth weight. This condition causes low birthweight because the cord is attached abnormally, so the baby struggles to gain weight in the last few weeks of the pregnancy especially. Thankfully her delivery did not have complications; it was smooth and problem free, so now I’ve just been working on her weight gain.

I asked the doctor if her abnormal thyroid results might be related to her struggle to get nutrients in utero. That made sense to me. If her body had trouble getting nutrients because her cord was attached abnormally…maybe THAT was why her thyroid numbers were still off. She had been fighting to gain weight. He said…no.

Yet this scholarly article addresses that EXACT concern of mine–Thyroid Function in Small for Gestational Age Newborns: A Review. And the article addresses the fact that there is medical controversy around diagnosing and treating SGA (small for gestational age) babies using the same criteria as AGA (appropriate for gestational age) babies. 

  

And this scholarly article addresses my thoughts/questions, too…TSH levels in newborn with low and very low birth weight vs rescreening for congenital hypothyroidism.

  

So the usual protocol with Synthroid and congenital hypothyroidism, as I understand, is that the baby MUST stay on it for 3 years. At age 3, they will do a trial off for one month, and retest the thyroid. If results are still in abnormal ranges, then the prescription is “needed” for life. 

Wait. There’s a chance that the results might be NORMAL at age 3? What about–this condition is never outgrown? I think I’m confused. Did I miss something? Is the diagnosis sometimes…wrong?

They won’t say the diagnosis can turn out to be wrong later. They will call it transient congenital hypothyroidism. But that doesn’t mean it was WRONG? You’re telling me she has this. That it won’t change. Throwing around the words brain damage (with no proof and statistics offered for this threatening claim).

And I have to do my own google searches to even find out about the transient version.  Wait. Doesn’t transient MEAN changing…

  

I don’t know much about the chemistry involved with synthetic hormones. I’ve heard and read that when guys take steroids, their balls shrink and don’t produce natural testosterone as well when they first cycle off steroids.

Maybe I’m wrong to assume that screwing with a newborn’s thyroid and hormones would cause similar damage to their thyroid? Cause it to shrink and not produce hormones correctly when/if they cycle off of their synthetic hormone that they have been prescribed…for life. 

So parents are supposed to scramble over to the pharmacy to get a “magic pill” for an unchanging, lifelong diagnosis (…that might change) to prevent brain damage (…of which I’ve found no proof). 

But I wasn’t told that transient congenital hypothyroidism exists; I wasn’t given any links to point me to statistics of brain damage in untreated CH from the US in recent times. I was told to START THAT MED.

 
Even if I am wrong to assume the fake hormone might damage her thyroid’s ability to function on its own. Even if I don’t know the exact chemistry. I do still have patient rights, don’t I? Am I allowed to ask questions about my own daughter’s health and her doctor’s unsubstantiated claims about brain damage?

I like facts. I don’t respond well to bullying, manipulation, guilt and fear tactics. I respond like–hold up. I’m going to need you to go over there, and let me think and breathe over here. 

I wondered to myself–Could synthetic thyroid drugs, like Synthroid, actually make your thyroid condition worse

  
Hm. 

I asked myself questions like–Have doctors ever steered us wrong before? Ever recommended or endorsed products that they later agreed/admitted were harmful?

  

Have I ever seen commercials that list tons of adverse side effects of drugs? Or had I seen commercials about class action lawsuits related to “you or one of your loved ones” who have possibly taken a certain drug?

Does the medical community ever change its collective mind about treatments? Do they ever recommend treatments that are later proven to be harmful? 10 Most Insane Medical Practices in History

  
Hm. 

I am allowed to ask questions and draw my own conclusions and make my own choices, right? Because I’ll be honest, I often don’t feel like people offer me that respect and space.

I look around at a world full of prescriptions, and you all go ahead. Not that you are waiting on my permission. But I respect your right to make that choice for yourself.

I have one main question for Rebekah’s doctor when I go for her followup appointment on May 2–Do you have proof of brain damage in children who didn’t take Synthroid?

Because that is a scary threat to throw at a mother of a newborn. And I found many parent forums discussing how their infant on Synthroid had lost weight and was not growing and not reaching developmental milestones. 

But I didn’t find any information about parents who chose a different route. I didn’t find any recent proof of brain damage in children in our country. I’m not saying it isn’t there. But where is it?

All the photos I saw were children from third-world countries who had severe iodine deficiency. And I found vague, unsubstantiated claims that mental retardation and brain damage must be avoided by starting the med ASAP, but I found no proof of this actual happening. 

I’m more than willing to look at that evidence. And yes it would have a profound effect on my decisions. 

But I didn’t find any recent photos or articles talking about all the brain damage that children developed by not taking Synthroid soon enough. Where is it? Someone let me know. 

Congenital hypothyroidism is diagnosed at a rate of at least 1000 per year for the past…I don’t know how many years. I can’t be the ONLY parent who didn’t immediately start Synthroid.  So where is the proof that a delay in “treatment” caused brain damage?
Where. Is. It?

I am Rebekah’s voice. It’s okay to ask questions on her behalf. Don’t tell me you are concerned for my daughter, and think that your concern trumps mine as her mom. 

I make choices that scare the crap out of many people. Okay. Just thank God you weren’t born one of my kids. And thank God that I’m not the one making choices for you and your kids and your prescriptions. I don’t know what else to say really.

I didn’t pick up the prescription.
  
 

Regarding Rebekah, 5th daughter

Regarding Rebekah, 5th daughter

How do you measure a baby’s worth? I certainly hope no one would say–on a scale.

My newborn daughter is a precious baby human, and not a little ball of numbers. Her sole purpose for existing is not to win the gold star of approval from any current pediatric expert, or from anyone.

Velamentous cord insertion. I’d never heard of it. And because my delivery went smoothly with no problems, I can honestly say–I’m glad I didn’t know during the pregnancy that her cord was attached abnormally to the placenta.

 
Rebekah Ruby Kate, born February 15, 2016, arrived only one day before the 40-week mark, but she only weighed 5lbs 10oz. Healthy and strong, tiny and perfect.

I know that her size isn’t super tiny for a full-term baby, but she is super tiny for one of my babies. My other girls weighed–7lbs 14oz, 8lbs 8oz, 7lbs 6oz, and 8lbs 4oz. 

Had I done something wrong? Would she have other developmental problems? I was a nervous wreck as I read and read and gathered as much information as I could about velamentous cord insertion.

This was a high-risk pregnancy, but we didn’t know that until after her delivery. 

Because Rebekah’s cord was attached to the sac instead of directly to the placenta, there were veins that could’ve easily ruptured.

Velamentous cord insertion occurs in 1% of singleton births, and in 15% of twin births. My sister had twins, my aunt had a twins ultrasound at 6wks along, and then it was “a disappearing twin” by the next ultrasound. I only had one ultrasound, at 16 weeks along. Did Rebekah also have a disappearing twin? I’m glad I don’t know. 

Apparently this type of cord abnormality often results in a miscarriage early in pregnancy. Had it been known, it would require a mandatory C-section possibly as early as 35-weeks. And if the condition is unknown during a vaginal delivery, often a vein can rupture resulting in a stillborn birth.

I’m glad I didn’t know. Now…had something gone terribly, tragically wrong during my delivery, maybe I’d say something else. But I’m glad. I am glad I didn’t know.

Maybe it seems reckless or irresponsible to say I’m glad that the risks were unknown, but I would’ve been stressed out for my whole pregnancy and possibly would’ve let her be taken early. I am glad that she lived and developed inside me almost the entire 40 weeks. And I am very thankful that nothing went wrong with her delivery, SO thankful. I barely bled and healed quickly after her delivery. 

Rebekah was easy to carry, and she stayed in utero until 39 weeks, 6 days. I taught my fitness dance classes until I was 39 weeks. I didn’t stress about anything. I have 4 other daughters, and Keith has 3 children. Our lives stay very busy, and I didn’t slow down any during pregnancy. Rebekah was my easiest delivery. I went from being dilated to 6cm to having her in my arms in about 30 minutes.

I knew she was small when I held her, but we didn’t know her cord was attached abnormally until I delivered the placenta. After reading and reading and reading, all I could find out about velamentous cord insertion was that–there could be serious complications with a vaginal delivery, and the baby will be small. 

Her brain, lungs, heart, liver, kidneys, etc would all be formed and functional. She would just be small. And she was. And she is. 

God designed us, and he didn’t hand over growth charts to make sure we all scrambled around trying to force our babies to all grow at the exact same rate. 

She was 5lbs 11oz at her one week appointment, and we were praised that she was back to birthweight so quickly, because they just want newborns back to birthweight by 2 weeks…so this was good progress. 

She had a minor cough her second week of life and had lost an ounce. She was 5lbs 10oz at her 2 week appointment, birthweight. Okay. This was fine to me. 

She can’t be expected to grow too much in length weekly, so all her gain is most likely going to be chub, 100% fat. 

I was thinking about it yesterday in terms of butter–

A box of butter is one pound, 16oz

One stick is 4oz, 8 Tablespoons 

So each Tablespoon is 1/2oz of fat. 

The pediatrician was saying he wanted her gaining 1-2oz daily, that’s 2-4 Tablespoons of butter staying on her DAILY. I’m thinking… what am I supposed to be eating to make that happen?!

Her pediatrician wanted me to pump and feed her instead of nursing her. And I’m staring at him thinking–when did numbers on paper replace common sense in parenting? 

I can’t imagine suggesting such an idea to all animals–pump and feed. We need to measure. Now, I’m not a wild animal…most of the time. But this made good sense?

I’ve successfully breastfed my other 4 daughters when they were little–15 months, 14 months, 14 months, 10.5 months. This is a 24-hrs a day, 7 days a week commitment. No I don’t have a medical degree, but I have pretty extensive on-the-job training. 

Pump and feed her instead? Because she lost one ounce? You wanted her back to birthweight by two weeks. She is. Where’s my stupid gold star? 

I told him I didn’t want to, and didn’t plan to, pump and bottlefeed her. My first daughter had nipple confusion because we introduced the bottle when she was 3-4 weeks old.

He smiled smugly and assured me Rebekah’s nursing was well-established by 2 weeks and that wouldn’t happen. And he knows this fact because…? He has personally breastfed…how many babies?

Um, I don’t care what your books say, nipple confusion and frustration is VERY real. And it’s incredibly difficult to work through. He suggested I could feed her with a syringe.

I didn’t. I breastfed her.

We came back to the pediatrician for a 4 week appointment, Rebekah had gained 15oz in 15 days and weighed 6lbs 9oz. This was the low end of acceptable for his charts, but acceptable. I let Clara, my 2-year-old, take 6 or 7 Doc McStuffins stickers from the sticker table as we left. Sure, have another. Another? Sure. Strolled out. 

Rebekah gained some again at 5 weeks, and then she lost some at 8 weeks. Panic gripped my heart. I got so sad. I felt like such a failure. And here she is–this beautiful little baby, kicking her thin limbs around and staring at me, trusting me, loving me, not worried, not sick. Just little. 

This is my job. And I’m failing. Socks don’t stay on–tragedy. I must fatten you into a pudgy basketball as soon as possible. Google search–can I feed my newborn…butter?

I borrowed a digital scale from my midwife and I am nursing diligently, and I’m weighing and recording her results regularly. My midwife told me that a 4-6oz gain per week would be great with breastfeeding, which is more like a pound in a month, not in week. That seemed more realistic. She said at the rate of a pound a week, soon Rebekah would be so round she wouldn’t be able to roll over or sit up. 

One night when I was frustrated because Rebekah is so small and her gains just don’t always fit the charts, my oldest daughter Margaret (who had just gone to her room for the night) sent me this text–

  

Margaret’s words really touched my heart. Rebekah’s beautiful eyes are full of curiosity. She smiles with pure joy when we talk to her. She tries very hard to coo and communicate with us. Rebekah is healthy and active and surprisingly very STRONG for her size. 

She may never be chubby. She may never fit the mold. I see more than that when I look at her. 

Rebekah is small. Okay. So what?
 

  
  

    

  
  

  
     

Thirst

Thirst

I need to fart. But I’m not going to. I’m not going to make one movement or sound. I’m not going to give you the  satisfaction of knowing I’m awake. Would that even be a satisfaction? I don’t know. But you aren’t getting it. 

My feet are throbbing like two tell-tale hearts. How am I supposed to go to sleep feeling them pulse and ache so hard I can almost hear them? I think about my thin-soles slamming against the pavement over and over. I should’ve worn thick socks and shoes with good support. What the hell? Why am I laying here awake to think about this dumb crap?

I fantasize. What about? Putting my feet into a bucket of ice water. That’s what. I think about the veins contracting and the blood slowing. First it would be needles, then fine. Then fantastic. I love ice baths. I love doing anything severe and quick, as long as it works. I squirt vinegar in my own eyes to stop them from itching. I know I could cut off my own arm if it got stuck and smashed like in 127 Hours

I lay here and know things about myself. You don’t even know me. I think that thought often when I’m mad. Who are you? You don’t know me.

I hear you come into the room, doing stuff and moving things. I am a statue. I am sleeping soundly without a care in the world…because fuck you, that’s why. You can’t ruin my sleep. 

You walk around. I hear the unmistakable sound of a glass quietly rattling as it’s set on the marbletop of my bedside table, right in front of my face. I hear you walk. I feel the bed shift around as you get in. Do you feel that ice I’m shooting out my back at you?

I try to swallow, but my mouth is too dry. I open one eye so barely and see a full glass through my eyelashes. I wasn’t even thirsty. Now I’m dying. I will drink my own pee first. 

You cannot come home and pick a fight with me. You can’t say whatever you want to me. You must have me confused with someone. It ain’t me. I’m not the girl who takes that. I could cut off my own arm. Do you even know that about me? No. You don’t know me.

Are you–…seriously? Seriously?! Who can go to sleep on cue, I mean…hit pillow and 5-4-3-2-SNORE??  Oh, hell no.

I thrash about and pretend to roll over. I hear your breathing change to awake. Ha! That’s right. NO ONE in this bed is going to sleep. I pretend that I am though. 

You lean over and kiss my neck. I can’t help but like that. Your warm tongue, your whiskers scratching. But you don’t get to know I like it. We don’t get to skip to this scene. 

I throw the blankets off. I will go get my OWN damn water MYSELF. Stomp, stomp, stomp.

I just wanted…I don’t know. Maybe in some small way you could’ve just. I want to be your hero, Keith. And like you just come home and wrap your arms around me and sing, “Wind Beneath My Wings.” And I giggle–no, no…stop; it was nothing. And you say–no Emily. I mean it–thank you. You are my hero. 

That’s all.

But you want this? Fine. We can do this. 

Just so you know. I am up here, still awake, laying on not-my-bed, warm tears rolling and pooling in my ears. 

And…I’m sorry.

26:42.14

26:42.14

I thought newborns were supposed to sleep A LOT. How do I forget these first few weeks every baby? They usually do. And it’s all great, but sometimes they DON’T. And then they don’t some more. 

So Rebekah (7 weeks) had been awake crying from 7:20-11:40am. Don’t give me an idea to try. I don’t want to hear it. I’m sure it’s perfect and works every time. Yeah…I tried it. It didn’t work. 

Fifth baby. Four hours. Trust me. I tried your idea. It didn’t work. I wasn’t in the mood for anyone’s solution or logic. I got in a stupid text-war with my husband.

I don’t know what it feels like to have bamboo shoots shoved under my nails. But I have an idea.

My last ditch effort was simply–lay her down and go put my head under a pillow in the next room. 

She’s fed. She’s changed. She’s loved. She’s been rocked. She’s been swaddled. She’s been unswaddled. She’s been sung to. She’s been bounced. She’s been fed again. She’s been burped. She’s been…you name it.

I don’t care if you have a degree in child psychology. Go read your books. 

I don’t care if you’re a doctor. Go take your pills yourself. 

If you have been a stay-at-home to five babies, okay…I might talk to you. Just depends on how you approach me. I can leg-press 605lbs. Just a random fact.

So there I was on my knees. Ass up. Head buried. Sobbing and drooling, steaming up my sheet with my hot breath.

Silence. I unbury my head. Huh? I pop up like a snotty meercat. Is she…

I have the necessary skills for all kinds of jobs. I taught them to myself in the school of mom knocks. I could’ve been a spy. I could be a cop. I could’ve been a ninja. I could’ve been a contender. I could’ve been a great many things. 

I know every spot that the floor creaks. I can dive roll without a noise. I can tighten every muscle and sprint so fast that my weight never reaches either foot.  I can ooze across a wall. I can creep across the carpet on my belly. I can find out if she’s fallen asleep. She had.

I passed a mirror. Holy hell. I can’t be her. Not today. The last thing I wanted to do while Rebekah slept was shower and fix my hair, put on makeup and get dressed to go…nowhere. I wanted to collapse and sleep too. 

But I can’t be her, this slob of a human, scraggly hair, bags under my eyes, no bra, splotchy face, baggy pajamas….especially not when Keith gets home. It’s bad enough to be emotional and fighting like a moron; I can’t be sloppy too. Must handle my shit ASAP. 

Okay, I’m just going to see what all I can get done in as little time as possible. A game that I made up for my exhausted self. Just…start the stopwatch on my iPhone and…GO!

This isn’t an amazing transformation or anything. This is the reality of my day. This is how I decided to keep my own sanity and a little bit of self esteem.

I took a before photo. I took an after photo…26:42.14 later. Shower, shaved legs, fast all-over lotioning, blow dry, chi iron, quickest makeup ever, not-pajamas-clothes. Felt great.

Crazy story–this insane lady ran into our home and started texting you. Then she left. I swear. We need security cameras. We can look around for her if you want, but um…she’s not here now. Just me. Quite sane. 

This isn’t a rehearsal for life. This is life. You’re living it. I probably have razor burn. It’ll be okay. They can’t put ALL of us in the nuthouse, can they? I don’t think there’s room.

I think I’ll play this game with my mountains of laundry now…