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.
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…
Rebekah has become very fussy/frustrated when I try to nurse her lately. On Tuesday, I finally decided to quit driving us both nuts and I started pumping. I am currently pumping around 12oz of breastmilk daily. She will nurse some overnight, but she takes a bottle very well at any hour, so whatever it takes at this point.
I am also currently supplementing maybe 8oz with Meyenberg powdered goat milk, as I work at building my supply.
I hate pumping. The hum of the pump mrrrrr mrrrr…starts sounding like a cow to me. And I scowl at it. When I’m home, I now pump 5min on each side and take a 30 minute break, and repeat. And repeat. And repeat.
I have a new found compassion for women who gave up breastfeeding. This is my fifth baby, and I never had a problem with my other four EVER. Not at all.
They were fat and healthy and born pros at nursing. I get it now. I get it. Oh my lord, how does anyone work this hard at sticking with nursing for more than 3-4 days?
I hope I don’t give up. Don’t let me.
My brain has these movie quotes tumbling around in my head.
I have nipples, Greg. Could you milk me?
Little…little Gepetto. That’s what we named him. Into a little saucer.
Are there many farms in Detroit, Greg?
You never told me about your cat-milking days in Motown.
Mrrrr mrrrrr mrrrr. Either you know exactly what I’m feeling here or you don’t know at all. I don’t think there’s much middle ground.
I received a phone call early on Friday morning, March 18. This was the call with the results from the second test. Keith was at work. My oldest three daughters at school. I was home alone with Clara (2) and Rebekah (4.5 weeks).
I stood there in my pajamas and tried my best to remember all the high points, so that I could learn more about everything I was being told–PrimaryCongenital Hypothyroidism. Synthroid. Brain damage. Daily prescription for life. Referral to a pediatric endocrinologist at a Children’s Hospital 2.5 hours away.
Rebekah’s newborn screening, done when she was exactly 7 days old on February 22, had had an abnormal result for her thyroid function.
On March 10, the state nurse had called me because she said my pediatrician’s office told her they couldn’t reach me. The day she called and left a message saying the initial newborn screening had abnormal results was–Audrey’s 11th birthday, and also cheer tryouts day for Margaret and Hazel; I’m not surprised I missed the call(s).
I listened to the voicemail late that night and barely slept, called her back the next morning, March 11. The state nurse told me that there were often elevated numbers that ended up being “false positives” after further testing. So I tried not to be too worried.
We had a more conclusive test done on Rebekah’s thyroid on Wednesday, March 16. The doctor explained the basics of TSH and T4.
So during my phone call with the pediatrician’s nurse on March 18, I asked what her test results were and what prompted them to prescribe Synthroid. I wrote this down–
T4 free 1.21
I asked for the numbers from the newborn screening as well, but apparently they weren’t handy. I asked if I could have all of Rebekah’s lab results mailed to me. I was told I would have to come and sign a medical release in person; though I was positive that I had filled one out at the first visit. But okay.
I was being told–we believe your baby has this condition. I was told in this one phone call–her results indicate primary congenital hypothyroidism. I was also told–this is not something babies “outgrow” over time.
They did not assess her for symptoms. They did not ask me if she had any of these symptoms. They based their decision to prescribe a lifetime prescription on her test.
So I start looking up the symptoms…besides her thyroid numbers they’ve given me…
Hm…no. She doesn’t have ANY of these symptoms. Maybe I’m being biased somehow? I start comparing photos of babies with the condition to photos of my baby…
Some websites said most babies with primary congenital hypothyroidism would start showing signs around 3-4 weeks old. Some sites said babies may show no signs.
Okay well 1 in 4000 babies is diagnosed with this disorder. There are about 4 million babies born in the US yearly, so that’s about 1000 newborn CH diagnoses a year. I can’t be the only one who has ever asked questions. So I start searching out more information from scholarly articles and parent forums.
The words “BRAIN DAMAGE” were used on the phone with me. What mother wants to hear those words? And I was told, she is being prescribed Synthroid and being referred to a pediatric endocrinologist.
Yes I understand that thyroid function is necessary. But I also understand science, and I would like proof of brain damage that they are threatening she will develop. Where are the recent statistics from our country that prove brain damage is imminent?
I’m not talking about photos and studies from iodine-deficient countries. Or studies from the 1970s and earlier (when the subjects were diagnosed because they actually manifested CH symptoms and not diagnosed by this screening.)
I cried. Right there on the phone with the nurse. Are you serious? Are you sure? What else can cause this result? And it never changes? I don’t want her on a prescription medication this young, definitely not FOR LIFE. I need more information and proof that this is the only option.
Sure. Most of these side effects are listed as rare. But here I have this tiny, perfect little newborn daughter…who has no visiblesymptoms of this disorder, and who is happy and healthy. And I am supposed to want to give her this drug…for LIFE? Starting immediately.
She had two very fussy weeks, week 6 and 7. But besides those 2 weeks, she’s content, alert, pooping once a day, peeing several times, nursing happily, smiling social smiles at her family, reaching developmental milestones, gaining weight…not as rapidly as they want her to, but she’s gaining.
I thought people with hypothyroidism had trouble LOSING weight.
If she took Synthroid and had some of these bad side effects, most of them…she wouldn’t be able to tell me. And clearly listed side effects were–weight loss and growth and developmental delays in children.
I should give her this drug why? To improve her thyroid numbers only. Is that even a guarantee?
I searched–Does Synthroid, always improve TSH levels? No, it doesn’t. I found this article, which states–
So. The ONE and only “symptom” she has–elevated TSH, may or may not go away…even if she takes Synthroid. And, she could have any of these other listed side effects.
I just…I need some time to process.
It seemed like most user reviews of Synthroid were adults who talked a lot about how it helped them with weight loss. I’m not saying these adults don’t need or benefit from the drug. I am saying–the last thing Rebekah needs…is weight loss.
Rebekah was 5lbs 10oz at birth even though I had her at 39 weeks and 6 days. My other daughters were 7lbs 14oz, 8lbs 8oz, 7lbs 6oz, and 8lbs 4oz. So Rebekah was small for one of my babies, and I have been working so hard to help her GAIN weight.
Rebekah had velamentous cord insertion, which can cause delivery complications and a low birth weight. This condition causes low birthweight because the cord is attached abnormally, so the baby struggles to gain weight in the last few weeks of the pregnancy especially. Thankfully her delivery did not have complications; it was smooth and problem free, so now I’ve just been working on her weight gain.
I asked the doctor if her abnormal thyroid results might be related to her struggle to get nutrients in utero. That made sense to me. If her body had trouble getting nutrients because her cord was attached abnormally…maybe THAT was why her thyroid numbers were still off. She had been fighting to gain weight. He said…no.
Yet this scholarly article addresses that EXACT concern of mine–Thyroid Function in Small for Gestational Age Newborns: A Review. And the article addresses the fact that there is medical controversy around diagnosing and treating SGA (small for gestational age) babies using the same criteria as AGA (appropriate for gestational age) babies.
So the usual protocol with Synthroid and congenital hypothyroidism, as I understand, is that the baby MUST stay on it for 3 years. At age 3, they will do a trial off for one month, and retest the thyroid. If results are still in abnormal ranges, then the prescription is “needed” for life.
Wait. There’s a chance that the results might be NORMAL at age 3? What about–this condition is never outgrown? I think I’m confused. Did I miss something? Is the diagnosis sometimes…wrong?
They won’t say the diagnosis can turn out to be wrong later. They will call it transient congenital hypothyroidism. But that doesn’t mean it was WRONG? You’re telling me she has this. That it won’t change. Throwing around the words brain damage (with no proof and statistics offered for this threatening claim).
And I have to do my own google searches to even find out about the transient version. Wait. Doesn’t transient MEAN changing…
I don’t know much about the chemistry involved with synthetic hormones. I’ve heard and read that when guys take steroids, their balls shrink and don’t produce natural testosterone as well when they first cycle off steroids.
Maybe I’m wrong to assume that screwing with a newborn’s thyroid and hormones would cause similar damage to their thyroid? Cause it to shrink and not produce hormones correctly when/if they cycle off of their synthetic hormone that they have been prescribed…for life.
So parents are supposed to scramble over to the pharmacy to get a “magic pill” for an unchanging, lifelong diagnosis (…that might change) to prevent brain damage (…of which I’ve found no proof).
But I wasn’t told that transient congenital hypothyroidism exists; I wasn’t given any links to point me to statistics of brain damage in untreated CH from the US in recent times. I was told to START THAT MED.
Even if I am wrong to assume the fake hormone might damage her thyroid’s ability to function on its own. Even if I don’t know the exact chemistry. I do still have patient rights, don’t I? Am I allowed to ask questions about my own daughter’s health and her doctor’s unsubstantiated claims about brain damage?
I like facts. I don’t respond well to bullying, manipulation, guilt and fear tactics. I respond like–hold up. I’m going to need you to go over there, and let me think and breathe over here.
I asked myself questions like–Have doctors ever steered us wrong before? Ever recommended or endorsed products that they later agreed/admitted were harmful?
Have I ever seen commercials that list tons of adverse side effects of drugs? Or had I seen commercials about class action lawsuits related to “you or one of your loved ones” who have possibly taken a certain drug?
I am allowed to ask questions and draw my own conclusions and make my own choices, right? Because I’ll be honest, I often don’t feel like people offer me that respect and space.
I look around at a world full of prescriptions, and you all go ahead. Not that you are waiting on my permission. But I respect your right to make that choice for yourself.
I have one main question for Rebekah’s doctor when I go for her followup appointment on May 2–Do you have proof of brain damage in children who didn’t take Synthroid?
Because that is a scary threat to throw at a mother of a newborn. And I found many parent forums discussing how their infant on Synthroid had lost weight and was not growing and not reaching developmental milestones.
But I didn’t find any information about parents who chose a different route. I didn’t find any recent proof of brain damage in children in our country. I’m not saying it isn’t there. But where is it?
All the photos I saw were children from third-world countries who had severe iodine deficiency. And I found vague, unsubstantiated claims that mental retardation and brain damage must be avoided by starting the med ASAP, but I found no proof of this actual happening.
I’m more than willing to look at that evidence. And yes it would have a profound effect on my decisions.
But I didn’t find any recent photos or articles talking about all the brain damage that children developed by not taking Synthroid soon enough. Where is it? Someone let me know.
Congenital hypothyroidism is diagnosed at a rate of at least 1000 per year for the past…I don’t know how many years. I can’t be the ONLY parent who didn’t immediately start Synthroid. So where is the proof that a delay in “treatment” caused brain damage?
Where. Is. It?
I am Rebekah’s voice. It’s okay to ask questions on her behalf. Don’t tell me you are concerned for my daughter, and think that your concern trumps mine as her mom.
I make choices that scare the crap out of many people. Okay. Just thank God you weren’t born one of my kids. And thank God that I’m not the one making choices for you and your kids and your prescriptions. I don’t know what else to say really.
How do you measure a baby’s worth? I certainly hope no one would say–on a scale.
My newborn daughter is a precious baby human, and not a little ball of numbers. Her sole purpose for existing is not to win the gold star of approval from any current pediatric expert, or from anyone.
Velamentous cord insertion. I’d never heard of it. And because my delivery went smoothly with no problems, I can honestly say–I’m glad I didn’t know during the pregnancy that her cord was attached abnormally to the placenta.
Rebekah Ruby Kate, born February 15, 2016, arrived only one day before the 40-week mark, but she only weighed 5lbs 10oz. Healthy and strong, tiny and perfect.
I know that her size isn’t super tiny for a full-term baby, but she is super tiny for one of my babies. My other girls weighed–7lbs 14oz, 8lbs 8oz, 7lbs 6oz, and 8lbs 4oz.
Had I done something wrong? Would she have other developmental problems? I was a nervous wreck as I read and read and gathered as much information as I could about velamentous cord insertion.
This was a high-risk pregnancy, but we didn’t know that until after her delivery.
Because Rebekah’s cord was attached to the sac instead of directly to the placenta, there were veins that could’ve easily ruptured.
Velamentous cord insertion occurs in 1% of singleton births, and in 15% of twin births. My sister had twins, my aunt had a twins ultrasound at 6wks along, and then it was “a disappearing twin” by the next ultrasound. I only had one ultrasound, at 16 weeks along. Did Rebekah also have a disappearing twin? I’m glad I don’t know.
Apparently this type of cord abnormality often results in a miscarriage early in pregnancy. Had it been known, it would require a mandatory C-section possibly as early as 35-weeks. And if the condition is unknown during a vaginal delivery, often a vein can rupture resulting in a stillborn birth.
I’m glad I didn’t know. Now…had something gone terribly, tragically wrong during my delivery, maybe I’d say something else. But I’m glad. I am glad I didn’t know.
Maybe it seems reckless or irresponsible to say I’m glad that the risks were unknown, but I would’ve been stressed out for my whole pregnancy and possibly would’ve let her be taken early. I am glad that she lived and developed inside me almost the entire 40 weeks. And I am very thankful that nothing went wrong with her delivery, SO thankful. I barely bled and healed quickly after her delivery.
Rebekah was easy to carry, and she stayed in utero until 39 weeks, 6 days. I taught my fitness dance classes until I was 39 weeks. I didn’t stress about anything. I have 4 other daughters, and Keith has 3 children. Our lives stay very busy, and I didn’t slow down any during pregnancy. Rebekah was my easiest delivery. I went from being dilated to 6cm to having her in my arms in about 30 minutes.
I knew she was small when I held her, but we didn’t know her cord was attached abnormally until I delivered the placenta. After reading and reading and reading, all I could find out about velamentous cord insertion was that–there could be serious complications with a vaginal delivery, and the baby will be small.
Her brain, lungs, heart, liver, kidneys, etc would all be formed and functional. She would just be small. And she was. And she is.
God designed us, and he didn’t hand over growth charts to make sure we all scrambled around trying to force our babies to all grow at the exact same rate.
She was 5lbs 11oz at her one week appointment, and we were praised that she was back to birthweight so quickly, because they just want newborns back to birthweight by 2 weeks…so this was good progress.
She had a minor cough her second week of life and had lost an ounce. She was 5lbs 10oz at her 2 week appointment, birthweight. Okay. This was fine to me.
She can’t be expected to grow too much in length weekly, so all her gain is most likely going to be chub, 100% fat.
I was thinking about it yesterday in terms of butter–
A box of butter is one pound, 16oz
One stick is 4oz, 8 Tablespoons
So each Tablespoon is 1/2oz of fat.
The pediatrician was saying he wanted her gaining 1-2oz daily, that’s 2-4 Tablespoons of butter staying on her DAILY. I’m thinking… what am I supposed to be eating to make that happen?!
Her pediatrician wanted me to pump and feed her instead of nursing her. And I’m staring at him thinking–when did numbers on paper replace common sense in parenting?
I can’t imagine suggesting such an idea to all animals–pump and feed. We need to measure. Now, I’m not a wild animal…most of the time. But this made good sense?
I’ve successfully breastfed my other 4 daughters when they were little–15 months, 14 months, 14 months, 10.5 months. This is a 24-hrs a day, 7 days a week commitment. No I don’t have a medical degree, but I have pretty extensive on-the-job training.
Pump and feed her instead? Because she lost one ounce? You wanted her back to birthweight by two weeks. She is. Where’s my stupid gold star?
I told him I didn’t want to, and didn’t plan to, pump and bottlefeed her. My first daughter had nipple confusion because we introduced the bottle when she was 3-4 weeks old.
He smiled smugly and assured me Rebekah’s nursing was well-established by 2 weeks and that wouldn’t happen. And he knows this fact because…? He has personally breastfed…how many babies?
Um, I don’t care what your books say, nipple confusion and frustration is VERY real. And it’s incredibly difficult to work through. He suggested I could feed her with a syringe.
I didn’t. I breastfed her.
We came back to the pediatrician for a 4 week appointment, Rebekah had gained 15oz in 15 days and weighed 6lbs 9oz. This was the low end of acceptable for his charts, but acceptable. I let Clara, my 2-year-old, take 6 or 7 Doc McStuffins stickers from the sticker table as we left. Sure, have another. Another? Sure. Strolled out.
Rebekah gained some again at 5 weeks, and then she lost some at 8 weeks. Panic gripped my heart. I got so sad. I felt like such a failure. And here she is–this beautiful little baby, kicking her thin limbs around and staring at me, trusting me, loving me, not worried, not sick. Just little.
This is my job. And I’m failing. Socks don’t stay on–tragedy. I must fatten you into a pudgy basketball as soon as possible. Google search–can I feed my newborn…butter?
I borrowed a digital scale from my midwife and I am nursing diligently, and I’m weighing and recording her results regularly. My midwife told me that a 4-6oz gain per week would be great with breastfeeding, which is more like a pound in a month, not in week. That seemed more realistic. She said at the rate of a pound a week, soon Rebekah would be so round she wouldn’t be able to roll over or sit up.
One night when I was frustrated because Rebekah is so small and her gains just don’t always fit the charts, my oldest daughter Margaret (who had just gone to her room for the night) sent me this text–
Margaret’s words really touched my heart. Rebekah’s beautiful eyes are full of curiosity. She smiles with pure joy when we talk to her. She tries very hard to coo and communicate with us. Rebekah is healthy and active and surprisingly very STRONG for her size.
She may never be chubby. She may never fit the mold. I see more than that when I look at her.
I want to sincerely thank A Mother of All Trades for nominating me for my very first Liebster Award. Take some time to check out her blog using the hyperlink.
I googled this award to try to learn a little more about it, as I’m incredibly new to the blogging world. Very honored, and thank you again, Jennifer.
“‘Liebster’ is a German word meaning beloved or dearest. In the blogging world, the Liebster Award is online recognition given by bloggers to other new bloggers for enjoying or valuing their work. It is meant to highlight and credit favorite new up and coming blogs within our writing community.”
(Jan 20, 2016 jentheredonethat.com)
The ten questions she asked me are as follows:
1. What made you start blogging?
I feel like I have some decent stories to share.
2. What was the last movie you saw, and did you like it?
Daddy’s Home–yes, I liked it.
3. If you needed a pick-me-up, what song would you turn on to cheer you up?
Different songs for different moods–
“This Woman’s Work” by Maxwell is a favorite, especially during pregnancy
4. What is one of your pet peeves?
Adults disrespecting children.
5. What are some things you’ve crossed off your bucket list so far?
Starting a blog! Ha! ;D
6. What is your favorite meal?
Any meal with all our kids; I don’t care what we are eating.
7. If you could meet any blogger in real life, who would you choose?
I don’t know yet, honestly.
8. What is your favorite childhood memory?
My parents coming to watch me cheer at football games.
9. What do you dislike about blogging?
The technical aspects–html code, glitches, etc
10. If you were stuck on an island and could pick one person to be stuck with, who would you pick and why?
My husband Keith–he would get us off of there, and in the meantime, I’d be with my favorite person.