How many times have I stretched a baby sock over a freshly lotioned, plump pink baby calf? With four older sisters, Rebekah, you know it was many, many, many times.
I would circle my finger around inside your little sock. It gapped so drastically. Rubbing the tiny knob of your ankle, watching your soft skin roll and wrinkle as I easily slipped the sock back off, I would kiss your long thin toes as they curled onto and gripped my finger.
A long, skinny 5lbs and 10oz, I usually dressed you in long-sleeved, footed outfits or in many layers, not because I was ever ashamed of you; please know that it was never that, but because I wanted to protect you from any raised eyebrows, from whispers of concern, from tight-lipped smiles, from critical eyes. People can be cruel.
Your wide eyes were glazed with fatigue at times, not always, but even once a week was too much. You fought sleep sometimes, even when we knew you were exhausted.
You will never know how many hours your dad would patiently rock you, slowly massaging, warmly snuggling, securely pressing you into his safe chest. Hours and hours, leaving his hand in your crib with you because you would wake if he tried to sneak away. Your strong, delicate fingers wrapped tightly around his thick finger, but he cannot deny that he was the one who was wrapped.
You slap my face with your chubby hands, throw your head back smiling, then head butt me as you pull my head toward you, slobbering all over my face as you cover me with the messiest, sweetest kisses.
In two days, you will be 9 months old, and this morning while I watched you laugh as you splashed water onto your fat face in the bathtub, I decided I needed to weigh you again.
Whoa…19.1 lbs of glorious chub, I was elated to see that. But just so we are clear–this scale has never weighed, and could never weigh, my love for you or your worth as a baby.
You are so curious about Audrey’s kitten Carly, and she is curious to know you too.
I keep an unorganized mental log. I have vivid memories, especially of the emotionally-charged moments.
I decided to share some more video clips and notes about my daughter, Rebekah Ruby Kate (currently 7 months old)
Born on February 15, 2016
Born at 39 weeks 6 days
Weighed 5lbs 10oz (my 5th daughter)
Rebekah had velamentous cord insertion (cord attached to amniotic sac instead of placenta). Because of her abnormal cord attachment, she had IUGR (intrauterine growth restriction), and she was also SGA (small for gestational age).
Tiny and perfect to me. She has had some health setbacks, but she faces them with the sweetest temperament. They don’t subtract one ounce from her perfection to me.
Rebekah had abnormal thyroid levels (elevated TSH) at 1 week old, 4 weeks old, 13 weeks old, and 16 weeks old. But because her thyroxine was always in range, and because I had read extensively about the differences in the hormonal profiles of SGA babies…we waited.
We chose not to start Levothyroxine until she was 16 weeks old.
Before 25mcg Levothyroxine…
February 16 (one day old)…
March 19 (one month, 4 days, 6lbs 15oz)…
April 8 (almost 2 months, 6lbs, 6oz )…
Rebekah lost 9oz of weight between week 5 to week 8. My milk supply was low, and I had to fight hard to continue breastfeeding, something I never had to do with my other 4 daughters.
I tried fenugreek, pumping, coconut oil, lactation cookies with Brewer’s yeast, ground flax, tons of water, chia seeds, coconut water…you name it.
And when she was 10 weeks, and had gained her 9oz back on only breast milk, I finally started supplementing with goat milk. I would still pump daily as well.
May 17 (3 months, 2 days, 8lbs 14.5oz )…
May 22 (3 months, 7 days, 9lbs 8oz)…
June 2 (3 months, 18 days, 10lbs)…
June 6 (3 months, 22 days, 10lbs 8oz)…
I did feel that she was doing well with all her milestones without starting Levothyroxine , but we agreed to start it when she was 16 weeks old.
I put all her thyroid level results on this paper, including the lab ranges which are different.
SHE STARTED 25mcg LEVOTHYROXINE ON JUNE 8, 2016 (16 weeks old)…
We crush her pill between two spoons, every morning. We mix it with about an ounce of apple juice or water.
We read in the drug’s instructions to take it on an empty stomach. This is quite a feat with an infant. For the first 3 weeks, we would feed her at 9pm; she would wake herself around 12am to eat; then we were waking her at 3am to eat, then waking her again at 5am for her med, and then she would wake at 6am ready to eat again.
Pretty much…we didn’t sleep.
Then on June 30, when we met her endocrinologist for the first time, she told us she tells her parents they can just give it with a feeding.
Well hallelujah. So then we would just let her wake us.
Rebekah developed torticollis (her head leaning right) almost immediately after starting Levothyroxine. I looked up anything I could to find out if there was a connection.
I only found that muscle aches were sometimes a drug side effect. So we decided they weren’t connected.
June 11 (3 months, 27 days, 11lbs)…
On the med, she started to be incredibly lethargic, especially in the afternoons. There were several weeks that her overall health was much worse after starting Levothyroxine. (Though some things improved later.)
I kept a detailed log of several of her daily habits and figures. Just to see if anything changed…
On June 12, when Rebekah was about 16 weeks old, I started making a more complicated formula that I got from Dr. Axe’s website–goat kefir, coconut water, flax oil, nutritional yeast.
June 15 (4 months, 11lbs 2.5oz)…
It seemed that her torticollis was worst when she was sleepy and/or had a full belly.
June 16 (4 months, 1 day, 11lbs 5oz)…
I stopped pumping breastmilk for her completely around July 1, 2016. My supply just dwindled and dwindled. It was a heartbreaking choice, and even today…2.5 months later, I hope to somehow go back to it. 😞
Rebekah had what seemed like a panic attack on June 24. It was incredibly scary. She had a mild fever, shifty eyes, very quick breathing and a fast heart rate. I guess I deleted the videos from that night. I wish I could delete my memories of it.
She ended up falling asleep that night, but then her fever continued the next day. I called the on-call nurse at AR Children’s; they recommended I call poison control. The poison control guy recommended I not give her any more Levothyroxine until her thyroid levels were checked.
This was all on a Saturday, so that means I spent about an hour at a walkin (after calling to find out if they check thyroid levels, and verifying with AR Children’s that I could use them), only to have the walkin Dr check her vitals and recommend that we go to the emergency room instead.
I spent about 5 hours in the ER with her–rectal temp 102.7, heart rate 185, 36 breaths a minute. This is my 5th child, so I realize these aren’t alarming vitals by themselves. But I was concerned about her behavior; the poison control guy wanted her checked out; the walkin Dr wanted her taken to ER, and her whole life has been so drastically different than my other girls.
They did a chest xray, a port in her foot (which ended up being unusable), drew blood, did a catheter, drew blood again. Everyone was incredibly kind, but the experience was sooo traumatic. But mostly…we waited and waited and waited.
Her thyroid levels came back in range. She was diagnosed with a UTI; they said her behavior was “normal” febrile seizures. She was prescribed Cephalexin…and we all went home exhausted.
Rebekah woke several times at night, and she would have a completely soaked diaper 3-4 times a night, so soaked that they would soak her outfit and sheets every time.
If you’ve followed any of Rebekah’s story and you thought to yourself–that baby needs drugs! Well, I’m sure you were relieved when we started her on Levothyroxine, but if I’m completely honest, she has faced her biggest health challenges and scares right after she started and the entire time she was on 25mcg of Levothyroxine.
I can’t say, and I’m not saying that the med CAUSED her torticollis, insomnia, panic attack, excessive urine, her UTI. But I am saying it’s been rough. Rough on her. Rough on us.
July 3 (4 months, 18 days, 11lbs 12oz)…
Rebekah started seeing a chiropractor on June 22, and her torticollis was better almost immediately.
July 10 (4 months, 25 days, 11lbs 12oz)…
Rebekah rolled over around 5 months, and in many ways she was adjusting her her dosage and doing okay.
July 29 (5 months, 14 days, 12lbs 10oz)…
However, she still woke several times a night with soaking wet diapers, and she was not gaining much despite her large calorie intake.
HALF DOSE 12.5mcg LEVOTHYROXINE (STARTED AUGUST 17)…
On Wednesday August 17, I decided to start giving her only a half dose for a few days to see if it changed her naps and sleep quality overall, her excessive urine output…etc.
I contacted the endocrinology nurses; they consulted her Endocrinologist, and she said we could leave it at a half tablet until September 12 when she had her levels checked again. And then we would go from there.
August 17 (6 months, 2 days)…
Her sleep quality improved overnight; she only had to be changed once at night now (instead of 3-4 times); she has started keeping her weight on, and her energy levels improved as well. I hoped her levels would “agree” with her behaviors.
Rebekah sat up on her own for the first time ever on August 19. She’s been more talkative and active, and also…more peaceful and restful at night and nap times.
August 19 (6 months, 4 days) …
On September 12, Rebekah’s TSH was 4.32 (in range) and her fT4 was 1.28 (also in range). Her endocrinologist said she can stay at 12.5mcg until her level check on December 12.
Depending on her levels in December, the endocrinologist said that we might talk about stopping the med entirely by Rebekah’s first birthday.
Up early, vacuuming under couches, scrubbing the stove top, reading articles, and now headed to Little Rock for a 9am appointment with the pediatric endocrinologist.
Many thoughts and feelings bouncing around my head and heart. God, please guide us, please let us make the best decisions for Rebekah’s well-being, help us stay humble and kind, and please let my many concerns be assuaged and my many questions be answered satisfactorily.
I don’t know that I would agree with her political views or her personal life, and I don’t know if she would agree with mine. But I certainly agree with and value many Eleanor Roosevelt quotes…
“No writing has any real value which is not the expression of genuine thought and feeling.”
“When life is too easy for us, we must beware or we may not be ready to meet the blows which sooner or later come to everyone, rich or poor.”
“I have never felt that anything really mattered but the satisfaction of knowing that you stood for the things in which you believed and had done the very best you could.”
“At all times, day by day, we have to continue fighting for freedom of religion, freedom of speech, and freedom from want — for these are things that must be gained in peace as well as in war.”
“We must know what we think and speak out, even at the risk of unpopularity.”
“This freedom of which men speak, for which they fight, seems to some people a perilous thing. It has to be earned at a bitter cost and then — it has to be lived with. For freedom makes a huge requirement of every human being. With freedom comes responsibility. For the person who is unwilling to grow up, the person who does not want to carry his own weight, this is a frightening prospect.We must all face an unpalatable fact that we have, too often, a tendency to skim over; we proceed on the assumption that all men want freedom. This is not as true as we would like it to be. Many men and women are far happier when they have relinquished their freedom, when someone else guides them, makes their decisions for them, takes the responsibility for them and their actions. They don’t want to make up their minds. They don’t want to stand on their own feet.”
“Will people ever be wise enough to refuse to follow bad leaders or to take away the freedom of other people?”
“One of the best ways of enslaving a people is to keep them from education… The second way of enslaving a people is to suppress the sources of information, not only by burning books but by controlling all the other ways in which ideas are transmitted.”
“In the long run there is no more exhilarating experience than to determine one’s position, state it bravely and then act boldly.”
“No one can make you feel inferior without your consent.”
“Women are like tea bags. You never know how strong they are until you put them in hot water.”
“Learn from the mistakes of others. You can’t live long enough to make them all yourself.”
“I am who I am today because of the choices I made yesterday.”
Rebekah had her thyroid levels checked on Monday, June 6; she was 16 weeks exactly. She currently weighs 10lbs 13oz. (She weighed 8lbs 10oz at her 13 week appt). So her little body has really been doing good catching up on weight gain this past 3 weeks!
Her thyroid levels were pretty much the same as they were 3 weeks ago at 13 weeks. Her 16 week levels–
TSH 8.28 (it was 8.18 at 13wks, and 38.56 at 4wks old) (high is bad)
fT4 0.89 (it was 1.13 at 13 wks, and 1.21 at 4 weeks) (low is bad)
Her T3 level was never checked at any of these times. T4 converts to T3, so we will be asking the endo if all her levels can be checked.
At 4 weeks, they wanted her to start synthroid and to get a radioactive thyroid scan. We chose not to at that time. After a series of very aggressive and threatening phone calls from the nurse, we opted to move to a new pediatrician. And we were subsequently reported to DHS for child neglect. (Read more on that here and here).
Then after the results at 13 weeks, the new pediatrician (after consulting the endocrinologist) just wanted her levels checked again at 16 weeks (which we did Monday), and he set up a consultation with a pediatric endocrinologist in LR. No medication was prescribed at that time.
Since Rebekah’s numbers at 16 weeks were pretty much the same as they were at 13 weeks, I kind of thought/hoped they would just want us to wait it out til June 30 (the endo appt).
However, the new pediatrician recommended she take synthroid until the endo appt, and then they will recheck levels again (she will be 19 weeks at that appt).
Keith and I talked it over, and we decided to start it. Not that we don’t have reservations, not that we won’t contact the doctor if she has bad side effects (loses weight, stops eating well, won’t sleep etc). I made a chart, and for the next 3 weeks, we are going to continue to track her progress in several areas (ounces consumed, pees, poops, sleep schedule, temperature, weight, and any other changes), and we will note the changes–good or bad.
We are a team, Keith and I and our children. We disagree at times; we state our reasons; we talk it out; we make a united choice. A team.
I won’t lie–it is my hope that Rebekah will be weaned off this synthetic hormone and that her natural thyroid will continue to improve on its own.
She took her first pill today, 25mcg daily. She weighs only 10lbs, so compared to adult dosing based on adult weights…this dosage sounded high to me for a 10lb baby. But we are going to see how it goes.
We had to crush the tablet into a powder and mix it with water and use a syringe. It is supposed to be given on an empty stomach, and no foods with calcium or iron for 4 hours after.
So that was certainly hard to work out with a baby who eats only milk which is full of calcium.
She went to bed at 9pm last night; we went to bed around 10:30pm. She woke at 1:20am for a feeding. Then we woke her at 3am to feed her as much milk as possible, then we woke her again at 5am to give medicine only, then she woke at 7am hungry. Who needs sleep?
The pharmacist said to just try to do that…space it in between feedings…where her stomach will be empty from the previous feeding, and can stay empty as long as possible (even if she can’t make it 4 hours).
She eats every 2-3hrs during the day, so I do think this schedule will be the best–taking the med super early in the morning. A midpoint time between big feedings. Not easy though.
We still have reservations about this entire diagnosis, treatment recommendations…all of it.
Most health issues have standardized levels for things–what’s considered high blood pressure, what’s considered high cholesterol, etc.
For congenital hypothyroidism, there is a different “normal range” for infants at every different lab, every different hospital, every different state. It’s insane.
Most charts consider age to be a factor, but barely any charts consider weight as a factor. This is “hard science,” how?
Why so many charts and ranges at all these different hospitals? Is there no consensus?
Also, Rebekah’s low birth weight, the fact that her cord attachment was velamentous (so she was likely IUGR)…none of these factors were taken into consideration when comparing her blood concentration and/or thyroid levels to “normal ranges” of average weight babies.
Should IUGR, SGA, premature, and/or low birthweight babies be compared to the ranges of average sized newborns? Their blood concentrations are different. As I found in my reading, these exact questions divide the experts’ opinions on treating mild congenital hypothyroidism. (See my other blogs about Rebekah for links to these articles).
From my reading, the babies born with severe congenital hypothyroidism have TSH around 750-1000, and yes, those cases can lead to mental retardation if left untreated. And I read those cases usually lead to mental retardation even when they ARE treated, and even when they are treated early.
But I never saw ANYthing suggesting a case of TSH of 8 ever leading to brain issues (or even untreated TSH of 38). Not whatsoever, and I’ve been reading like an obsessive nut. Did anyone find information on mild, untreated CH cases leading to brain damage?
So I reeeeally take issue with the nurse at the first pediatrician basically screaming BRAIN DAMAGE at us on the phone 3 different times, over and over. I really take issue with her/them reporting us to DHS as neglectful parents.
Maybe this is protocol behavior? Is it? If so, then I take issue with this fear-mongering, bullying protocol. Where do I campaign for it to be changed?
The doctors use a vague statement “congenital hypothyroidism has been linked to mental retardation.” And that’s true…the severe cases (treated or not). What about the mild cases?
People can be motivated with fear, or with facts and information, or with concern and compassion. And not all methods are equally effective on all people.
We don’t respond well to bullying, never have…never will. We were never given specific facts, only vague, unsubstantiated claims/threats of brain damage. We aren’t motivated by bullying, even when bolstered by ignorance. We received no kind guidance, concern, compassion, patience.
I feel that too many factors are ignored, and that a blanket treatment approach is preferred (forced if possible) instead of monitoring levels a few times.
REACHING OUR DECISION
I do know so many adult friends who have told me they take synthroid, and have no side effects or issues. Adults who have finished their brain development, don’t weigh 10-11lbs, aren’t 4 months old. Their skeletons are finished growing, they stay pretty much the same weight, they have gone through life’s major hormonal changes, such as puberty (and some even menopause).
It’s just…I know a body can become dependent on a synthetic hormone and then stop making its own natural hormone.
We felt that her body needed to be given the chance to normalize on its own…and we did give her time, and her TSH did lower considerably, and is in normal range on many charts. And her fT4 was never out of normal range, and still isn’t on many charts.
But then on the flip side of that, we decided that “abnormal” results on 4 tests in 16 weeks was enough to start the medication and then retest at 19 weeks.
We observe her daily in “life’s laboratory” at our home. No we don’t chart and record every change, but we notice changes (and we record many of them).
She isn’t a ball of numbers; she isn’t a stack of lab papers; she isn’t a diagnosis; she isn’t a statistic; she isn’t a blob of data.
She’s a baby. Our baby. A precious life we value more than our own.
She’s been gaining so well (finally in the 8th percentile); she’s so happy; she’s hitting milestones. She does have days when her eyes look tired, but less and less lately.
Is there enough going “wrong” that she needs a daily medication (possibly for 3 years, possibly for life)? We didn’t really think so, but we will try it, record changes, and will not ignore anything.
Siiiigh, one day at a time. 🙂
I’ll update after the endocrinologist appointment.
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.
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).
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.
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.
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).
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…
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.”
Rebekah Ruby Kate, now 3 months (born February 15, 2016)
8lbs 14.5oz (5lbs 10oz at birth) 0.2 percentile
22 1/2 inches (20 1/8 at birth) 11.5 percentile
Head 15.5 in (12 7/8 at birth) 46 percentile
As of Monday, May 16, her TSH has come down quite a bit, but is still out of range (however, I wasn’t told the normal range for her age).
TSH 8.18 (38.56 at 4 weeks)
fT4 1.13 (1.21 at 4 weeks)
The new doctor is making us a consultation appointment with a pediatric endocrinologist. The endocrinologist said he wants to monitor her levels again in 2-4 weeks, and he could answer any questions and would discuss treatment vs no treatment at our appointment.
Next thyroid level check- June 6 (16 weeks)
Endocrinologist appt-June 30 (19.5 weeks)
We will come to the appointment prepared, plenty of questions. Will we consent to a prescription of Synthroid or a radioactive isotope scan if this is recommended?