One finger

One finger

I slammed the front door. 

I threw my dusty garden gloves on the floor and collapsed onto the stairs, hot tears flowing. 

“What’s wrong?” Keith put hand on my shoulder.

“I’m all gross. I wouldn’t touch me.” I’d been working on my lawn for 4.5 hours. No…not “lawn.” It’s a hill of dust and clay, covered in mounds and mounds of leaves. There is nothing “lawn” about it. 

“Did you hurt yourself?” He kept rubbing my shoulder. 

My lower back throbbed. I shook my head, which was buried in my folded arms, resting on my knees. Then I lifted it up to answer. 

“Well I was just about finished up with raking leaves and tilling up the stupid dirt and fertilizing and putting out grass seed and watering…well…and some of the leaf bags were barely on the road…because I had just watered the dirt below them, but I was going to move them back…but then this guy drives by and hits the bags on purpose with his truck and one busts all open! And he lives right there.” I point through my closed front door. It felt so mean, mostly because I was just so drained.

“The house on the corner?” Keith tried to see through the wall. 

“No, the one next to that.” I opened the front door and corrected my pointing. “That black truck.”

“Babe I’m really sorry. I mean technically you’re probably not allowed to have the leaf bags on the road at all.” He tried to be fair about his assessment. 

“People park all over this road. They put their trash cans on the road. Kids play basketball in the road. It’s not that uncommon for some obstacle to be on this road. They were barely on the road and I was just about to move them off. He ran into them on purpose, and he didn’t have to do that. Why would he?! I would never do that to someone out in her yard, working her ass off!” I cried some more angry tears. 

“No. He shouldn’t have done it.”

“Well…I marched up to the corner of the yard and flipped him off, but he never even looked up at me as he checked his mail. So then I said, ‘Sir…I think you need to have your eyes checked. You accidentally ran into my bags of leaves. I’m worried that you may not be safe on the road.’ And he just looks up at me and yells, ‘Keep your leaves off the road. I was in my lane, and they were in the way.’ Then he just walked off so I came inside.” Revenge is human nature…and plenty of ideas ran through my head. 

I wouldn’t do anything back to him. I know myself. I’ll calm down. It just hurt my feelings and pissed me off. And I’ll admit I shouldn’t have flipped him off.  I shouldn’t allow anyone to make me lose my character, no matter how cocky and rude they are. 

“Well…there’s nothing you can really do about it. I’ll move the bags off the road. Go take a shower.” Keith was calm and sweet. He went outside. I sat back on the stairs. 

I wanted to call the courtesy police of common decency to plea my case. It was just mean. And I didn’t know this guy, and was fine to continue my existence never having to meet him. Why would he introduce himself to me in this way?

“Well I went over to talk to the guy.” Keith came back into the house after moving the bags of leaves. 

“You did? What’d you say?” I love Keith.

“Well I was just going to talk to him calmly, but he came out of his house already mad and ready to argue, so I said, ‘Listen. I don’t appreciate you being a dick and making my wife cry. You could’ve handled that in a number of different ways besides the way you chose to.’ And then he was all, ‘Well there are kids on skateboards all over this road. I wasn’t about to drive into the other lane to miss the leaves because there could’ve been a kid on the other side of the hill.’ And so I asked him…okay, if the bag of leaves had been a kid if he would’ve hit the kid because it was in his lane. And he goes, ‘Well…no.’ And I asked if it had been a parked car, would he have hit the car…and again he said no. And I asked what would’ve been wrong with stopping and asking you to move it if he felt like he couldn’t safely drive past it. But he didn’t have an answer for that, just said your leaves shouldn’t have been on the road. So I looked him in the eye and said, ‘It was a dick move. And you know it.’ And then I came back over here.” My hero. I know if I was a guy, I wouldn’t want Keith as an enemy. 

“Thanks for sticking up for me, even though I guess it was my own fault for having them on the road.” I couldn’t have stuck up for myself in my exhausted condition. I would’ve just cried. 

“I love you. You’re my wife. I’m not going to let some asshole make you cry because he had a bad day at work or something. Come here.” He didn’t care that I was all dirty and sweaty. 

God, yes I did flip him off in anger, and I shouldn’t have done that. I’m sorry I did that. Did he deserve it? Well…maybe I felt he did, but I’ll let you sort that out. Please, please still bless my yard of dirt and help some grass grow. 

___________________________

So when I hear a story of one finger on a girl, I can’t exactly say that I cover my mouth with one lace-gloved hand as I fan myself in astonishment with the other. 

There was a recent incident at a school event involving a child and a rude gesture. Unfortunately, emotions often run high in sports, and I can’t even begin to compile a complete list of inappropriate things I’ve heard the adult fans say. 

It wasn’t the first time, nor will it be the last, that a student athlete (male or female) has used inappropriate language or gestures. And each time this happens, the students are rightfully chastised–whether by a ref, their own coach, their parents, the principal…or all of them. Her decision was unsportsmanlike, and she was properly punished by school officials. 

That’s it. The end. 

She is a child. If she is not your child, then concede to the proper authorities on this one–her school and her own parents only. She doesn’t deserve to have anyone else stand in line because they feel entitled to punish her further. It’s not your place. It’s been dealt with.

If some time in the future, some tables turn and I hear adults chastising your child and her character based on a poor choice, I will be the first one to jump in between. Poor choices are pretty common, but sadly compassion isn’t very common. 

If you look around for some moral high ground to prance around on, you might notice that it’s pretty crowded up there. If you’re honest with yourself about your own bad choices as a teen, you might find some empathy in your heart. Humility is a beautiful thing; pride not so much. And as for myself, remembering my own recent finger, I decided I better just take a seat right next to her. 

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Am I allowed to say that?

Am I allowed to say that?

I don’t know where I stand. 

I don’t have a political passion. I don’t know what I think. I step back and take it all in. And I am not eager to jump in and scream alongside either group of nuts. Yes. That is how most of it looks to me–you’re all nuts. 

To be completely honest, I don’t see much difference between the extremely loud, self-appointed spokespeople on either side. But there are always a few quieter souls on each side, who speak wisdom and sense. And these are my people. 

Back in the early 90s when I was 12 years old, I listened to my 12 year old peers mouth loudly about “their” political views. I remember on one particular occasion, one friend said about a candidate, “He’s completely ignorant! He’s been quoted as doing a complete 180 on so many issues.”

Is that ignorance? To see both sides of issues? But isn’t ignorance…not knowing? The more information I gather, the more I understand both sides–the harder my decision becomes to choose where to stand. Which group of nuts? THAT is ignorance? Indecision?

And then my most respected, favorite teacher responded that she sees the wisdom in changing your mind. I always find myself somewhere very close to the middle, yet somehow always strategically positioned away from both sides. Yes, both. 

Every major decision/position becomes more difficult for me the more I read both sides of the actual issue, after filtering through piles and piles of fear propaganda, which inevitably floods both sides. Yes, both. 

I just want to back away slowly to some third location. No marching, no signs, no political memes, no snark, no anger, no gloating, no mocking, no blaming, no rudeness…just…over here. Looking for an actual action to engage in and not merely the appearance of positive action. 

I’ve read some and watched some and thought some about what life was like in the U.S. for the slaves and the brave few who risked their lives to help them. And also about the Jews in Nazi Germany and the brave souls who helped them. 

I would be one of those brave souls if I lived in those times, I’ve always told myself. Probably many of us thought this same thought. But…would I have been? Would you? Would we? 

And what about now. Are there opportunities to be brave and do something real? I don’t mean walking around with posters or laughing at memes or social media activist arguing or blog posts (tongue in cheek) or yelling that someone else is ignorant. 

Who is being brave? I don’t mean loud. I mean real action. Who is brave? Am I? Are you? Are we?

I’m not.

I had a complete stranger bark at me the other day that I should “just keep on making those babies” and just keep on “adding more people to an overcrowded world.” She loved to dictate what I should be doing with my life, and I certainly could’ve returned the favor. 

You know…it is overcrowded in my 1800-sq ft house when I have all of our 8 children here. My children are fed, loved, housed, clothed, but yeah it’s a little crowded. Should I stop feeding them to feed someone else? Could we find a space to take in more people? I considered it. 

And how about this stranger who wanted to ridicule me? Is this girl brave? Not married, no kids, screaming at me, a stranger to her, about our social obligations. How many people is she personally responsible for feeding and clothing and housing? If only herself…then is she at least signed up to host some of the Syrian refugees? Let’s hope so. 

She had already decided she would not have any kids out of social responsibility. This announcement was possibly meant to make me feel ashamed of my large, blended family. It did not. But it did make me wonder how many people she was feeding and housing between her selfie posts with perfectly applied makeup and styled hair and her angry, dictating  rants directed at strangers…who was she feeding…

So how many of my friends have signed up to host a refugee family? How many of you? Be proud of your decision. Let us know you are one of the brave ones.  Show others how they can sign up, and if not host…where do I meet you to volunteer for a worthwhile cause where people are doing something, not only complaining?

I filled out half of the “register to be a host” form, and then stopped. Will I go back and finish signing up? I might. You don’t know me. I just might. 

I probably won’t. Should I myself host…or should I pick out strangers that I think should host, and sign them up…

One link to get information about hosting refugees…

https://paih.typeform.com/to/dl4g60?

And now for myself… 

<Google search–birth control…what…is…that…>

Congenital Hypothyroidism: Burn down the disco

Congenital Hypothyroidism: Burn down the disco

For the quick version for those who have kept up with the other blogs about Rebekah–she is getting her thyroid levels rechecked again on Monday, June 6; she will be 16 weeks. She has an appointment to see a pediatric endocrinologist on Thursday, June 30 in Little Rock.  She currently weighs 10lbs 10oz, catching up.

I finally felt like fleshing out more details regarding our experience with the pediatrician and his nurse  (who turned us in to DHS for neglect). So here goes…

My personality pisses off the most annoying people. And that is okay. I’m getting used to it. I can be super laidback, warm, compassionate, flexible…so easy to get along with.  Or…based on how you approach me, I can be all facts and a stone cold statue.

I give people lots of chances, and I’m incredibly forgiving, not forgetful…but forgiving. I will remember what happened, and I might keep you at arm’s length, but if you want to be back on good terms with me–okay, that can definitely happen. And if you want to battle…okay. I’m probably already dressed in my suit of armor with you.

I have an incredibly good memory–my blessing, my curse. And I keep damn good records of anything controversial that goes down. If you are in a position of potentially having a dramatic effect on my life or my family’s lives, and you choose to threaten me, promise me something, lie to me, change your facts…it’s documented. I promise you. 

As Rebekah’s parents, we disagreed with and hesitated with our first pediatrician and his nurse. I found them to be decent people at first…and still think they are, but the nurse became aggressive and condescending and even angry…with no REAL facts to bolster her aggression. She reported us to DHS for neglect because we went against their medical advice. 

The DHS ladies who came to my house were kind, diplomatic, and listened to me

My letter to the DHS investigator…

 

M—-, (DHS investigator)

I looked through my calls and voicemails, and updated the info I had emailed you with more accurate details. Please call or email me if anything is unclear.

When we go see Dr. Fife on Monday, May 16, I will put you on his list of people who are allowed to access her medical records and tests. Is that all you need me to do?

I’d prefer not to go by Dr. Dilk’s office to do this, unless absolutely necessary. Fife’s office told me that Dilk would transfer all her records to them.

Let me know.

Emily

And I included all of my notes about Rebekah in the email…

Rebekah was born on February 15, 2016. My 5th daughter with a midwife, my 4th water birth. At 5lbs 10oz, she was my easiest delivery by far. Her cord was attached abnormally, so she had IUGR (Intrauterine Growth Restriction…this is why she was small). We didn’t know this until she was born, and she was born at 39wks and 6days, only one day early. No delivery complications, in fact, I delivered her quickly once I got in the water, and I bled very little. 

In any following bold notes, MW is midwife appointment; Pedi is pediatrician appointment; BM means breastmilk; GM is Meyenberg powdered goat milk (recommended by Dr. Sears as a supplement).

Birth      5am  2-15-16    5lbs 10oz MW  BM only

1 week  12pm 2-22-16   5lbs 11oz Pedi  BM only

On February 22, Dr. Dilk was not in the office and available for our 10:30am appt because he had to go to Mercy. However, we weren’t told this until around 11:30am after waiting an hour already.

We were told we could continue to wait or reschedule. We chose to wait…because they had been adamant that they would like to see Rebekah within one week, and this was a Monday and she was one week exactly. 

Plus, we were already there, and my husband was off work and helping with my toddler and newborn. So we waited and I nursed Rebekah a lot extra while waiting. Consequently, she weighed one ounce over birthweight at this first appt after 2 hours of nursing.

Rebekah did the PKU and bilirubin tests on 2-22.

We consented to both tests. We were told it would be a heel stick only. Nurse Benedict attempted and failed to find a vein in Rebekah’s hand after bending Rebekah’s wrist in half and stabbing 4-5 times unsuccessfully. Then they finally did the heel stick they had said they were only going to do.

Bilirubin was borderline; it was 20.9 which is just below the level when they recommend light therapy. 

Nurse Benedict wanted to schedule an appt to have her level checked again the next day to see if it was going up or down. They had told me, and I had read, that bilirubin usually peaks at 5-7 days. This was day 7. 

All of my other 4 daughters had had some jaundice , and I didn’t feel that another check was warranted. Rebekah is also seen and checked by my midwife regularly. She had a few factors that possibly made her more jaundiced as well–lower birthweight, breastfed, and I have my midwife wait until the umbilical cord finishes pulsing before cutting (more blood means more dead RBC). 

“There is growing evidence from a number of studies that all infants, those born at term and those born early, benefit from receiving extra blood from the placenta at birth,” said Dr. Heike Rabe, a neonatologist at Brighton & Sussex Medical School in the United Kingdom.

And another quote from that same NPR article about delayed cord clamping“Some studies have found a higher risk of jaundice, a buildup of bilirubin in the blood from the breakdown of red blood cells. Jaundice is treated with blue light therapy and rarely has serious complications.”

There are jaundice cases that are abnormal and are a cause for alarm, and there are expected and normal cases…such as Rebekah’s. 

I told the nurse that Rebekah could be checked again at her 2-week appt if she still looked jaundiced to the doctor.

Nurse Benedict pretty much insisted that she make us an appt for 8:30am the next day. I told her AS she made it–there’s no way I’m coming at that time. I take my older 3 daughters to school, and then in addition, I would have to bend over backwards to get my 2 year old and newborn bathed and ready to be seen that early.

Nurse Benedict told me that I could cancel the appt if I realized I couldn’t make it. So…the next morning I called and cancelled it. And then made her 2 week appt. I’m not sure if Benedict was willfully setting me up to look as though I missed appointments left and right…or what here. 

Side notes–(In the DHS report, they alleged that I was a “no show” at two appts that I rescheduled, one appt that I cancelled, another appt that I never made–nor was I consulted that it was made for me, and a final appt that my husband cancelled when we finally chose to switch doctors).

I received a call on Feb 25 and 26. I returned the call on the 26th but no one answered. So I just planned to see them on March 1 at my appt. 

Screenshots of calls are at the bottom, in reverse date order. If the call is 479-314-4940, then it was an outgoing call from me. It the call is 479-259-9400, then it is incoming. 

There are also a few Little Rock calls on the list–to and from the newborn screening nurse, and to and from AR Children’s Hospital. I erased all other calls that were between my pediatrician calls, but as you can imagine with 5 busy daughters (14, 12, 11, 2, and newborn)…my calls with the pediatrician are not my only calls, nor my only daily time commitment.

Her two week appt…

2wk 1d   8am   3-1-16      5lbs 10oz Pedi BM only

Rebekah had had a runny nose and had slept a lot extra and not nursed as much this week. Plus, this appt was 8:30am, and she hadn’t nursed much before she was weighed (unlike the 12:30pm appt where she nursed 2 hours). 

The doctor was concerned about her “weight loss” of one ounce. I believed she had a fully belly at 12:30pm when weighed the week before, and an empty one at 8:30am on this day. Plus she was back to birthweight exactly…even with this slight fluctuation and 1oz weight loss. Baby should regain birth weight by 10 days to 2 weeks.

(I made a mental note to be sure she nursed very regularly between this day and her next appt. And 15 days later, she had gained 15oz.)

Side note–DHS report says they were concerned about Rebekah’s weight loss.  She lost one ounce, and was at birthweight. By the next appt, 15 days later…she had gained 15 ounces.  

She has never weighed below birthweight–not at the doctor’s office, with my midwife, or at home on the borrowed scale. 

This is neglect? I have heard of so many newborn babies being so much smaller than she was and/or losing so much more weight. 

Dr. Dilk acted irritated that there was some “misunderstanding” and that I didn’t come back a second time the week before to have her bilirubin checked. I told him I didn’t believe there was a misunderstanding. I had cancelled the appt because I believed she was fine based on the test that showed…she was fine (below the level needing light therapy).

He said she still looked very jaundiced to him, and he wanted to check again. My husband consented, but requested the heel stick only…instead of the excessive unsuccessful jabbing and then the stick.  Rebekah’s bilirubin was 11.4.

Dr. Dilk didn’t make any comment to me about this level, in fact his nurse was the one who called and told me the result. At her next appt (2 weeks later), he mentioned that her color looked fine. He didn’t ask to retest bilirubin again at 4 weeks. 

Side note–The DHS report stated she had “severe jaundice” and “prolonged jaundice.” Her bilirubin never reached the level where they even recommend light therapy; her eyes were never yellow. But it was considered severe?Okay. 

She was also regularly seen by my midwife who has been a nurse, midwife, and/or EMT for decades.

I did feel that “severe” and “prolonged” were not accurate adjectives, but okay. We consented to having her blood drawn and tested twice to check bilirubin levels, and both times it was below the level requiring light therapy. This was neglect? How?

Persistent jaundice in the neonate is defined as jaundice that lasts longer than 14 to 21 days “

Breast milk jaundice is a type of neonatal jaundice associated with breastfeeding. It is characterized by indirect hyperbilirubinemia in a breastfed newborn that develops after the first 4-7 days of life, persists longer than physiologic jaundice…”

March 10–I missed a call from pedi at 10:30am. Benedict left a vague message–they “wanted to talk to me about some of Rebekah’s results, and to talk about a followup.” I still have this voice message. I planned to call back the next morning. Her message basically sounded like they were scheduling the next appt, didn’t sound urgent whatsoever. 

March 10 was my 5th grader’s birthday and also my two oldest daughters were trying out for cheerleading that day. I received and missed another call from Benedict at 2:40pm, assumed it was again about rescheduling…no voicemail, and planned to call the next day when my schedule was less hectic.

I missed several other calls that day (not just pedi calls, I deleted the other calls from my call log to take a screenshot of all our conversations and contact with their office). I missed so many calls that day as I was busy with a  birthday and cheer-tryouts (and with my toddler and newborn). One call I missed was from Nurse Brown who was with AR newborn screening. 

I didn’t recognize the phone number and didn’t answer. I thought the voicemail might be another spam call telling me I won a cruise, so I didn’t even listen to it until I wasn’t busy, which was about 10pm that night. (My older daughters had both made cheer, and we had been at a dinner and meeting until late that night.)

The message from LR newborn screening said Rebekah had an abnormal result on her PKU test, message was on 3-10-16.

I called LR first thing on 3-11-16, spoke to Nurse Brown for 20 minutes. She told me that Rebekah’s thyroid test had an abnormal result. We weren’t told the TSH or T4 levels. But I will say Nurse Brown was incredibly kind and helpful. 

She also told me that my pediatrician “turned this issue over to her” because they said they were unable to reach me, and they made it sound like I never communicated with them, which I have several incoming and outgoing calls of varying lengths to disprove this. Nurse Brown even said, “You’ve talked to them and been to appts that many times? Now I wonder why they made it seem like they never spoke to you…”

Nurse Brown said that often the PKU tests result in a false positive, and that I just needed to have her thyroid rechecked. I had an appt with my midwife on 3-14, and I rescheduled with Dr. Dilk for 3-16 to get her levels retested.

4wk      10am   3-14-16     6lbs 3oz MW   BM only
4wk 2d  11am   3-16-16   6lbs 9oz Pedi  BM/GM

Rebekah has a different thyroid test on 3-16-16. I received a phone call from Nurse Benedict on 3-18-16. I was told by the nurse (not the doctor) over the phone that Rebekah’s results were consistent with congenital hypothyroidism (which wasn’t even true. CH would be low T4 and elevated TSH. Her T4 was in normal range, but I didn’t know the “nurses’s diagnosis” wasn’t accurate until I got Rebekah’s paperwork. Why would we give her a prescription for fake T4…when her T4 was IN NORMAL RANGE? This makes sense?).

Individuals with CH are unable to make enough of a thyroid hormone, so a low level of thyroid hormone in the blood may indicate that your baby has CH…”

I wrote down some and memorized some of the information she told me. I asked to have Rebekah’s medical records and labs mailed to me. Benedict said I would have to sign a medical release. I had already signed one, but okay. The day I went to pick up her records in person, the receptionist didn’t even ask for my ID. 

Nurse Benedict stressed over and over that Rebekah would have brain damage if she didn’t start taking Synthroid immediately. No actual scientific proof or evidence of this scary threat/claim was offered WHATSOEVER. 

From my own research, I found cases of untreated SEVERE congenital hypothyroidism leading to brain damage, but never mild untreated cases. (Which…if her T4 was IN RANGE, they shouldn’t have even said her results were “consistent with congenital hypothyroidism” anyway.  A topic for another blog.)

In fact, I found instead…articles where endocrinologists DISAGREE about whether mild cases should even be treated, especially in babies who have low birthweight. 

“Further trials are needed to determine the thyroid hormone profile in both preterm and full-term SGA newborns and also to evaluate the effectiveness and safety of LT4 treatment in these infants.” (More links in other blog called Rebekah Update).

So I have a nurse tell me a wrong diagnosis over the phone, and she tells me I need to start giving my baby this fake hormone daily…or she will develop brain damage. I then find lots of scholarly articles (written by specialists) and studies that warn about the controversy in treating SGA (small for gestational age) babies with LT4 (levothyroxine/synthroid), so I am hesitant…and I want more information before starting the drug.  So is this the part of my behavior that proves I’m a neglectful parent? Because I read?

But Synthroid MIGHT bring Rebekah’s TSH into range. Is that enough of a benefit to start it? As her parents, we had to weigh out that decision. Does synthroid always bring numbers into range and keep them there? Does putting a baby on synthroid guarantee a life free of worries, as many people have suggested to me?

I also read so many parent forums where babies ON SYNTHROID continued having crazy test results–super low TSH and super high fT4…both levels insanely out of normal ranges. Such as this…

Dr. Dilk never spoke to us after these thyroid test results, not even on the phone. I do feel that all of this was VERY MISHANDLED. 

Rebekah was never examined for any symptoms of this disorder, nor were we asked if she had any of the symptoms. Almost as if Nurse Benedict were reading a script, we were told–START THAT MED, or she will develop BRAIN DAMAGE. Who wrote her this script to read?

We were told that we would be referred to a pediatric endocrinologist in LR. We were told over the phone to go pick up a prescription for Synthroid. We were not informed of any risks of their suggestion OR of any other options (Armour thyroid, foods or supplements that enhance a thyroid’s natural functioning). We were not informed of something called transient congenital hypothyroidism.

I had so many questions. So I did my own research about all of this, and we chose not to pick up the prescription or give it to her at that time. Different information or different test results could change our minds, but so far I haven’t seen it. 

We had started supplementing with goat milk on March 14, even though I wanted to breastfeed only, as I had only breastfed my other 4 girls. I didn’t want Rebekah to get frustrated at the breast or nipple confused. However we started supplementing to help her catch up on her weight quicker. Appointment with midwife on March 21.

5 wks    10am   3-21-16   6lbs 15oz MW  BM/GM

I had tried to call AR children’s myself on March 18 to schedule an appt (see call log), but I was told they had to receive the referral from my PCP first. I told the woman that we were researching Synthroid and unsure we were going to put her on that. The woman at childrens told me we would have to follow our PCP’s recommendations until we were contacted to set up an appt. 

We had to give her fake T4 when her T4 level was in normal range? Why? So I read more. 

I received a vague message from Childrens on April 13 (still have this) saying Rebekah had a 1pm appt…but the date wasn’t even stated on the message, and no one had spoken to us from my pediatrician’s office or from Childrens. I had not been contacted by anyone to schedule this appt, told it was going to be made…nothing. No further communication from our pediatrician whatsoever. 

I called AR childrens back on April 13 and found out that an appt had been set for us for the next day (??). The woman at childrens said they spoke to someone at my pediatricians office. But we weren’t called. 

We were both working on the next day, and couldn’t possibly get our shifts covered with half a day’s notice. I also had no childcare in place for my toddler so she wouldn’t have to travel 5-6hrs. 

So I cancelled it and got their contact information. I told them we will call back to reschedule if and when we decide to have her thyroid scanned.

Keith and I discussed this issue at length, and we had decided we would have her checked out at a later date or if we noticed any alarming changes in health, happiness, or behavior.

She was gaining. She was happy. She was hitting milestones. She follows objects with her eyes, smiles at us all the time, coos at us, eats and sleeps and poops and pees regularly. 

What were they wanting to change or fix or improve? Her TSH only? I had read plenty on to be convinced there was no guarantee that Synthroid would “solve” TSH levels. 

She had IUGR and was subsequently fairly small, and yes…she was still little, but gaining and happy. I will say that her “holding up her head strength” probably needed improvement. For a while, her head and belly were big compared to her little limbs (which seems consistent with other IUGR babies’ photos I had seen).



Rebekah at 14.5 weeks

We supplemented with goat milk a while; I went back to strictly breastfeeding a while. We borrowed an electronic scale from my midwife. And we weighed Rebekah at 8-9pm every night, and kept track of her progress.

So, we assumed that was that. We would have her rechecked some time later or if we noticed changes that were unusual. So a week passes. 

On April 21, I received a call from Nurse Benedict from Dilk’s office, and she is sputtering like an angry auctioneer, stating I had missed my appt with Childrens. I asked her–who made that appt? No one had spoken to me regarding availability or ANYthing, and I couldn’t make it with a half-day notice. 

She mumbled something about how she thinks she might have asked Childrens to work me in last minute. But again…no communication with me if I was free to come there the NEXT day. 

She asked me if Rebekah had been taking the Synthroid. And I said no. She flipped out and started talking over me and throwing around the words “brain damage” again. I had to cut her off to squeeze in my words–I wasn’t thrilled with the list of Synthroid side effects; I wasn’t necessarily thinking a radioactive isotope scan was necessary; I wasn’t alarmed by Rebekah’s behavior or progress hitting milestones. (And at this point I didn’t even know that I was given wrong information on the phone…her T4 was in range all along, and this nurse was prepared to shove fake T4 down Rebekah’s 2 month throat herself.)

She insisted that I come to see Dr Dilk ASAP since I hadn’t done his/their other recommendations. I wanted to schedule for a mon, tues, or wed…because that’s when Keith is off and could come too. I told her I could come Monday May 2, so we made an appt.

I switched to pumping to feed her the breast milk on Tuesday, April 26. Then the next day (Wed Apr 27), we started supplementing with goats milk again (since she was doing breast milk from the bottle anyway).

When Keith saw on the calendar that I had scheduled for May 2, he asked me why I chosen that date because he had work obligations that week. I told him there was no way I was calling to reschedule it based on how I had been treated. So he called to reschedule for the following Monday, May 9.

Nurse Benedict got irate with him (according to Keith; I didn’t actually hear the conversation), and she threatened that “something was going to have to be done” about us. He asked what that meant. And she said–well, this is all a form of neglect. She went ahead and rescheduled for May 9 (Rebekah would be 12 weeks exactly on that day).

Frankly, we didn’t appreciate or even understand the nurse’s hostility and threats toward us. Why? I still don’t understand. 

Their recommendations based on test results were not personal attacks against us or our daughter. I never took the recommendations as attacks. 

Likewise, our decisions were not personal attacks toward them. We took the information they gave us (albeit some wrong information), we did our own research, we looked for actual facts and studies and evidence, we weighed out risks and benefits. We made our choices. 

Did she take our choices personally? That is what I think. 

Keith and I discussed everything. And we decided to ask around for a recommendation for a new pediatrician. I scheduled ASAP with Dr. Fife. The earliest he had was 11am on Monday, May 16.

I told Keith that he needed to call to cancel with Dilk, and he did this on Friday May 6 (see call detail). He told the receptionist we were scheduled with Fife for a second opinion on Mon, May 16. And if Dr. Dilk himself wanted to speak to him, he could call him back.

We received no further communication from Dilk office. However, according to the DHS report, they apparently left our Monday appt in the system instead of cancelling it…to make it look like we were neglectful no-show parents…again.

DHS investigators arrived on Wed May 11 to read allegations that Rebekah was being neglected. 

Allegedly, she had weight loss that concerned them (an ounce…which brought her down to birthweight at 2 weeks old) and gaining problems (?), she had severe jaundice (which was below the level requiring light therapy…and which was significantly lower when checked a week later), she had prolonged jaundice (why did he not ask to measure bilirubin at 4 weeks then?). Also…we were allegedly “ignoring” her care and diagnosis. Um, no…we just needed some time and space and more information…ESPECIALLY factual and correct information. 

Rebekah is our concern. Rebekah. Not being bullied with incorrect diagnoses and unsubstantiated threats. Rebekah. 

Rebekah’s TSH was 8.18 (also in range now, on some charts at children’s hospitals) on May 16. We are still going to have her levels rechecked a 3rd time on June 6. Of course, we hope that both levels are still in range. Of course we hope that. 

On Monday, May 16…

Her fT4 was 1.13

Her TSH was 8.18

We have an appt with a pediatric endocrinologist for a consultation on June 30. (I have been compiling a list of questions. Pray for Rebekah. Pray for us. Pray for him.)

I’ll update soon about how the new pediatrician appt went.  Not now. This entry is long enough already. 

Just…DOCUMENT everything, especially if you are unconventional. Journal all details. Write it down. And expect to be attacked. 

People wear me out. This sequence of events is to be considered “care” and “therapeutic”?

Call logs in reverse order, starting with soonest calls…

From Keith’s phone…
Version 2

Version 2

IMG_4596

IMG_4592IMG_4590IMG_4589

 

Heretic

Heretic

Do not read. Do not think. Do not question the infallibility of “The Church.” How dare you.

I see patterns. My mind correlates and makes analogies. I have a revolutionary soul. 

Heretics were burned for daring to question. There was no separation of church and state. Heresy was a crime against the government, and punished accordingly. Meaning–burn them. 

 

Does that sound ludicrous when we think of freedom and justice? That people were punished by the state, for disagreeing with religious beliefs?

In theory, one might say–“YES! That is insane!” Theoretically that sounds absurd. But what about in actual practice? Do we have a new “The Church” that is infallible? Are heretics punished if they question it or go against it?

Prior to 1436, the idea of everybody having a Bible was out of the question, even if they could read. Printing presses hadn’t been invented. Bibles were only read in Latin or Hebrew or Greek. 

Some people are bred to be elite. They learned Latin. They can read the Bible. But not the rest of us? We couldn’t possibly understand it, best to trust them. 

But we all know almost all the people were stupid back then though. Am I right? And really, most of us are plain dumb now, too.  Just quoting some facts here, right? 

“Most common people of the time, however, could understand neither the language nor the content …and most common people are still clueless about the content of the Bible today…”

“The common people of the middle ages had no intellectual defense with which they could make a reasonable judgment about the Truth.”

“No one was punished for simply believing a heresy. The crime was teaching it, and leading others astray. The Church felt it was their job to protect the souls of the innocent.”

(Quotes from catholicbridge.com)

_______________________

Yeah. I’m not veiling this. I do feel like the conventional medical community is the new “The Church”…or at least, I feel that it’s often viewed as a hierarchy of infallible authority. 

Don’t question it. You couldn’t possibly read or understand anything for yourself. If you go against the grain, you are a heretic, a threat, a menace. 

I will now include a portion of my conversation with the new pediatrician. This is not verbatim, but it’s close. 

Dr–So you went against medical advice of your last pediatrician? Why did you not give your daughter the medicine he prescribed?

Me–I did some research on it, and chose not to.

Dr–That was a very reckless choice. 

Me–Based on what? I can show you the scholarly articles and studies I read to make that choice.

Dr–For this relationship to work, we need to have a certain amount of trust and respect here. 

Me–I agree 100%…I would love to receive both of those from you, as well. Mutual, right?

Dr–Well, I’m not a mechanic, and I don’t claim to be. And you…didn’t go to medical school. 

Me–Right.

Dr–So…you need to defer your judgment to me. 

Me–…I did defer my judgment. That’s exactly what I did. I put the final decision on hold, while I’m gathering more information…

(Huh? Does he mean transfer my judgment?)

Dr–You are not the authority. 

Me–(thinking…I’m not? In my life and my daughter’s life…choices for our care…I’m not? Does he know what these words mean? Is this really being said?)


Dr–I am not the authority. 

Me–okay…?

Dr–GOOGLE (scoff, scoff) is certainly not the authority. The pediatric endocrinologists–THEY. Are. The. Authority. 

Me–Maybe in your world. In mine…God. Is. MY. Authority. 

guess i’m not the

guess i’m not the

People are so scared of…everything. So much damn fear. It’s exhausting.

The DHS investigators came over on Wednesday, May 11. Come on in, ladies. That’s all you will ever hear when you knock at this house. It’s not scary, don’t ever concede because you think it’s scary to have DHS visit.

They were so nice, much like the other two ladies who came in August last year when another Jewel in my eye called them over. I listened to them read the allegation from Nurse Benedict about Rebekah. Okay. Well, that was certainly full of half-truths, exaggerations, and easily-disproven lies.

I had my version organized and ready to email, much like I had in August when Clara had 10-12 flea bites. One of the nice ladies fed Rebekah her bottle while I emailed them tons of facts. I’ll relay both DHS experiences in full detail soon.

The DHS ladies explained to me that 85% of the claims they investigate are completely unfounded. It’s not a shock to them, but it is a lot of red tape and paperwork. They see a lot of spite, retaliation, petty-tattling, and outright lies.

I appreciate them and their jobs, and feel sorry that so much of their time has to be spent on claims that they know aren’t legitimate.

I just wanted to encourage my friends–don’t live in fear. And also, when you know some Billie Badass has her scope zeroed in on you–document, document, document. Be an expert on your own self, and on your children. Keep a detailed factual journal…because as nice as the investigators are, it’s hard to rely on your memory alone. And documentation holds up better in court.

We thought about retaliating. You know…that’s only human nature. Find out if Dr. Dilk knows how his nurse treats patients, and if he condones it. Report them to the state medical board for a review of how they mishandled our dealings with them. Pay the $1200 charge for 3 well-child checkups in $5 a month; harassment is expensive. But, no. No. Like so many other unwarranted stabs at us, Keith and I decided to walk away from it.

They are not our concern. They deserve no such attention.

Our focus, our true concern actually IS our beautiful daughter Rebekah Ruby Kate. She’s not a rope in a tug-of-war. She’s not a bundle of numbers. She is not a diagnosis. She is in fact…our beloved baby. (Side note…she weighed 8lbs and 8oz last night. She is getting small little chub rolls by her bum. It is our hope that she will be 8lbs 10oz for her appointment with the new doctor tomorrow…3lbs over birth weight at her 3-month checkup).

We removed Rebekah from their “care” on Friday May 6, because we are seeking a second opinion (appointment is tomorrow at 11am). Nurse Benedict left our May 9 appointment on the books (as well as 3 other appointments that she kindly made for us with no communication).

I assume she didn’t cancel them in an attempt to make us look like “no show” negligent parents. The thing is…I document EVERY detail of the truth when I start seeing the target lasers all over me. I have screenshots of every call she made to us, every call we made to her, days and times and call lengths…and notes on what was discussed.

I’ve had lots of friends and family message me individually with prayers and questions and true love and concern. I appreciate every one of you, and I will give updates. I will. It may take a few days after the appointment to get her next results in, and then it may take a few more days before I have the emotional energy to talk openly. But I will update. I will.

On Wednesday and Thursday, I was MAD. And it all makes me sad, too. Such a broken, backwards world. What are people’s true motivations and thought processes? Their TRUE ones. Keith and I both seem to have been born with an innate ability to piss off annoying people. Thank God we were also born strong.

Keith and I talked it over at length. The nurse may have crowned herself our personal browbeater…but we aren’t hers. Nope. Not going to do it. Part of me wishes we would’ve recorded some of her ludicrous calls. It was like trying to talk to an angry auctioneer.

We will not bow down to anyone, except God or Christ. This angers people, but it’s not a pride war. We aren’t playing her games. And then…I have to look for a benefit of the doubt, too. I have to try to think why, and I have to force myself to think…maybe it was just some CYA? But why the obvious lies?

He that is faithful in that which is least is faithful also in much: and he that is unjust in the least is unjust also in much. Luke 16:10

But it wears me out. I’m tired today. I’m tired. I’m tired of using my shield and armor to deflect. I’m tired of the bullshit, but most definitely…not defeated.

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Rebekah at 10 weeks old; she is now 13 weeks old…but alas my phone/camera is broken
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a few hours after Rebekah’s beautiful water birth

A lovely song for a tired soul…

 

“A Bad Dream”

Why do I have to fly
Over every town up and down the line?
I’ll die in the clouds above
And you that I defend, I do not love

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind

Where will I meet my fate?
Baby I’m a man, I was born to hate
And when will I meet my end?
In a better time you could be my friend

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind
Wouldn’t mind it
If you were by my side
But you’re long gone
Yeah you’re long gone now

Where do we go?
I don’t even know
My strange old face
And I’m thinking about those days
And I’m thinking about those days

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind
Wouldn’t mind it
If you were by my side
But you’re long gone
Yeah you’re long gone now 

Forgive Anyway

Forgive Anyway

No apology. And I decided to burn both posts anyway. I also forgive you both. I do. I get it.

And if you want to say something to me, just come to me without a mask and say it. I’m actually a decent person

A person. A real person with skin and stuff. I’m not words. I’m a person. 

🎧”Tryin hard to maintain, then go ‘head cause I ain’t mad atcha”🎧

“And Jesus went into the temple of God, and cast out all them that sold and bought in the temple, and overthrew the tables of the moneychangers, and the seats of them that sold doves,

And said unto them, It is written, My house shall be called the house of prayer; but ye have made it a den of thieves.” ‭Matthew‬ ‭21:12-13‬ ‭KJV‬‬

“Create in me a clean heart, O God; and renew a right spirit within me.” Psalms‬ ‭51:10‬ ‭KJV‬‬

“No lion shall be there, nor any ravenous beast shall go up thereon, it shall not be found there; but the redeemed shall walk there:” ‭‭Isaiah‬ ‭35:9‬ ‭KJV‬‬

  

“It is as sport to a fool to do mischief: but a man of understanding hath wisdom.” Proverbs‬ ‭10:23‬ ‭KJV‬‬

“Into thine hand I commit my spirit: thou hast redeemed me, O Lord God of truth.” Psalms‬ ‭31:5‬ ‭KJV‬‬

“If I alone bear witness about myself, my testimony is not true.

There is another who bears witness about me, and I know that the testimony that he bears about me is true…

…He was a burning and shining lamp, and you were willing to rejoice for a while in his light.” John‬ ‭5:31-32, 35‬ ‭ESV‬‬