Tiny Dancer

Tiny Dancer

UPDATE

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.

THE PROCESS

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. 

HARD SCIENCE

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).

MENTAL RETARDATION

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. 

Our little beauty, little miss tiny dancer
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Congenital Hypothyroidism: Burn down the disco

Congenital Hypothyroidism: Burn down the disco

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

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

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

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

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

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

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

My letter to the DHS investigator…

 

M—-, (DHS investigator)

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

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

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

Let me know.

Emily

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Her two week appt…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Rebekah at 14.5 weeks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Monday, May 16…

Her fT4 was 1.13

Her TSH was 8.18

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

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

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

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

Call logs in reverse order, starting with soonest calls…

From Keith’s phone…
Version 2

Version 2

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IMG_4592IMG_4590IMG_4589

 

Things Moms Carry

Things Moms Carry

“Nooooo!!! I yant CHEETOS!!” They aren’t Cheetos, but there are no battles of logic with a 20-month-old. They are the grossest bag of generic weirdo-brand bacon cheddar hot fries that I’ve ever seen. 

“Let’s get…these chips…” I try quiet horse-whisper-bribery, which angers her further. 

“Nooooooo!” She squeezes the bag so hard with passionate angry-love, I do think the cellophane seal might pop. 

“Okay okay…release!” I finangle the bag from her grip. Her moist hands streak across the bag producing the syncopated stuttering of poorly strung bow. 

So we carry Tito’s acid-burp bacon chem-fries around the store. I say “we,” but I mean *I* carry them and I carry…Clara because she insisted on walking instead of riding in a cart but then got tired…and Clara’s giant baby doll because she couldn’t possibly leave her in the van…

Oh annnd…the other 7 items I collect while Keith waits with our cart on 8 deli employees to take 20-min to slice him 1-lb of roast beef…alternately speaking to each other about their break times, avoiding direct eye contact with customers, occasionally asking him if someone helped him, and forgetting what thickness he wanted. Holding up pieces of meat…this? Like this? How’s this slice? …and this one?

My bra is too tight, it is about 7:45pm, I am thinking–why did we wait so long before having supper? I am thinking–the minivan ride home is going to be horrendous with the defiant mood Clara is in. I am thinking–how am I going to sneak these laxative Cheetos out of her sight? I am thinking–what if we have to buy them and she eats them…and then digests them and then…!? I was thinking–Calgon!

I am thinking–

“You don’t understand! I coulda had class. I coulda been a contender. I could’ve been somebody, instead of a bum, which is what I am.” (On the Waterfront) <back of hand to forehead in dramatic pose> 

Then as I feel my bicep slowly sinking into the abyss of defeat, I feel Clara’s arms wrap around my head…she kisses my cheek a couple of times without me asking, “Love you…Mommy.”

Strength returns to my arm, to my heart. A life of purpose. 

Worth it. It’s all worth it.

…I didn’t buy them, and deep down I know she appreciates it. 

Grip

Grip

I hold a tight grip around what I think should happen. The kind of grip that has to be ripped off, where you have to hammer each finger repeatedly and pry and attempt to uncurl them. 

I don’t want this. 

I don’t want my oldest three daughters living their summer days a block away from my house with their stepmom while their dad works. 

Should I seat myself gingerly on a settee, spread my skirt folds around me properly and smile silently? Sit up straight with grace and poise and fan myself every so gently as I wave to my daughters  through my window?

But…I’m their mom. Should I pull out photos of myself with a weird mushroom haircut and toasted almond lipstick, pregnant at 21? A tent t-shirt, a layer of net maternity panties, a layer of cotton panel maternity jeans…with stylish boot cut openings barely skimming the top of my shoes because I never did find long length…is that what we all need to see to remember I’m the mom?

Should I highlight the “right of first refusal” clause and text it to Norman? I might have done that. And he says–that doesn’t apply anymore; they’re old enough that they don’t need a babysitter. 

Should I cry about it to my own mom? I might have. Should I create an analogy where Norman is at his house, I’m working 40 hours, and the girls are sitting at my house with their stepdad? I might have done that too. 

Should I think about our summer days of years past…dying their hair with punky colors, watching them play softball, giving each other manicures, taking them to swim, signing them up for the summer reading program, taking them to my gym where I ran the kids’ summer fitness program, teaching them how to crochet, helping them set up an eBay business to sell their outgrown clothes, tie-dying tank tops and tshirts, watching them learn to swim like champions with Tideriders, driving them to church camp…

Should I throw my phone at the bed and leave the room? Should I call my lawyer? Should I argue and debate and push my side of things down his throat? Should I say that she doesn’t have a right to play house with my daughters?

Maybe I did do all that.

Should I pray?

Should I feel my grip relax in a calm, peaceful way that no hammer could produce? Should I see his side? Should I let go?

I’m not saying I’m some shy, agreeable fairy by nature. I’m not. I’m not. I’m not full of gracious wisdom on my own. 

People don’t tell you this part of a divorce. And you don’t know it until you live it. And if you haven’t lived it, God love you, but you cannot relate. You literally cannot empathize. You can imagine as a friend or you can scoff as a non-friend, but that’s it. 

Sitting on the back deck with your two youngest daughters, close enough to hear your oldest three squealing and laughing in a yard just over the hump in the road. 

Maybe I should’ve just been a perfect person then? And not gotten two divorces…

Oh yeah, let me just get right on that. 

I wanted to be right. You know? I wanted things to go my way. I wanted to keep my grip locked tight, tight, tight. But I thought, and I prayed. And I texted back that we can do what he wants. I’m not saying I didn’t fight first, but…

It’s not always about being right. 

It’s about doing right.









Grin, Glasses, Gravel

Grin, Glasses, Gravel

“Who’s this? Who are you?” Christina’s dad Charlie was all grin and glasses. I stood there with my spend-the-night backpack. 

“I’m Emily.” I am 12 going on 65.  I am not shy. They would find out soon enough. But for some reason his comfortable, forward attitude brought out a somewhat shy side of me the first few times we met. 

“What? What’s that? I can’t hear you. Your name is Beverly? Tina…tell your friend to speak up.” He was standing in front of his TV and huge speakers.

“Dad!? This is my friend EMILY!!” Christina’s voice raised to at least 3 times its usual volume at home. For the first few times I came over, I thought everyone was PISSED because they all yelled instead of speaking to each other.

“Oh Emily. Oh okay. Well why won’t she look at me? That makes me feel like she’s lying. Hey, hey…look me right in the eyes. Right here, Emily.” He was maybe 18 inches from my face, bug-eyed, tapping his finger on his glasses and snapping his fingers with the other hand. 

Soon I would be dancing around their living room in my swimsuit with a bedsheet towel-twisted and wrapped up on my head like Carmen Miranda. Not today, not yet…but soon.

“I am looking you in the eye.” My eyes flitted into 1/2 second eye contact; I couldn’t help laughing. 

“We have to scream because his hearing is damaged from being overseas.” The first time I met her, I might’ve thought Christina’s mom Katy was much more reserved than the rest of them, but soon, maybe even in this first visit, she was yelling right along with the rest of them.

“Beverly…Emily…come here…listen to this!!” The volume up arrow was probably dented in more than all other remote buttons. I forgot to check. 

Charlie’s grin grew even larger as the TV volume grew louder. He nodded along in approval. The windows rattled. We were all covering our ears in pain. 

“Whaddya think of that? Pretty awesome?”

“Oh yeah it’s great.” It was LOUD, but I didn’t mind it then, and especially looking back…yeah, it was great. Charlie was great. 

“What’d you say? What’d she say?”

__________________________

“Dad…let us drive your truck to the store.” We were born to be independent, Christina and I. The way we did math, 14 was close enough to 16. 

Besides, what cop would see us in a bright yellow, full-sized truck? Might as well have been camouflage. 

“My keys are on the table, but I didn’t say you could…but let’s just say I won’t be looking out the window to make sure my truck is there for the next hour.” He handed Christina ten dollars.

“Let’s go.” Christina pushed her sunglasses on confidently. I heard the truck keys slide across the table, jangle off the edge, and quiet into her grip.

“Are we really going to take his truck? We can walk to the store. He didn’t really say yes, did he?” I stepped into my tied shoes, pressing my heels down and flattening the shoe backs. I put my sunglasses on clumsily. 

“Close enough to yes. Let’s go.” Oh, I’m coming. I wouldn’t miss this opportunity, but I just had some nervous questions.

We slid into the hot truck, slammed the heavy doors closed, peeled and repositioned thighs a few times. Christina started it up, much too quickly for my nerves. I felt that a moment of silence for prayer and reflection wouldn’t have been uncalled for. 

I burned my fingerprints off fumbling with the  metal seatbelt. Christina cranked the radio. The few times I had ever driven in my 14 years, I wanted the radio and a/c off, so I could concentrate. 

She banged the transmission into reverse. I looked over my shoulder for her. Her driveway had lengthened itself by miles.

“Wait a second…do you know how to drive backwards?” Cautious spectator, I was full of Nintendo-nerves. Can we handle this level? Are there ditches on the route?

“Yep.” Not even the slightest hesitation.  Gravel crunching. 

_______________________

“Does your dad still fix dryers?” No machine intimidated Charlie. I had three daughters by this time; a non-working dryer was not an option. 

“Yeah, he does. But he’s heading to the hospital right now. His stomach is bothering him again.” Christina’s heart pumped Daddy’s girl blood, always has. Still does. 

“What?! Are you serious?! Oh gosh, I’m sorry. I’ll figure this out.” Christina and I had now been friends for 19 years, since we were only 12, belting out “We are Family” as 7th graders in 9 weeks of sampler choir at Darby Junior High.

“Who is that? Emily? Tell her we will call her back in a few minutes.” Charlie sounded more irritated than anything. If he could’ve willed his body back to how he wanted it to behave, he would’ve rathered that. 

“Oh gosh, girl. Do not call me back.” I think about my own dad. Did they get old? Are we old? When did…

He called back. Of course he called back.  I imagine he shook IVs as he raised the phone to his ear, maybe rolled his eyes…but then smiled. He definitely smiled instead. You could always hear his smile through the phone. 

“Here’s what you do…” He told me where to go to order a heating element for my dryer, told me his friend’s name and number if I needed to get it finished in the next few days. 

Or if I could wait a few days, as soon as the hospital people were done annoying him, then he would be glad to come fix it for me. 

That’s what was supposed to happen.  That’s what should’ve happened.

I shouldn’t have gotten the next phone call I got from Christina. It should’ve been a different conversation. Charlie should’ve gone home.  He should’ve shown up at my house a few days later, should’ve fixed my dryer.

God, I hate it. 

How did we all hold it together watching Katy walk Christina down the aisle? How did they hold it together? Charlie should’ve been there. Grinning all the way down the aisle, shaking Justin’s hand, lighting fireworks and cracking jokes at the reception.

.

.



Cold marble rocks…every one of them is a million stories. I’m honored to pass on the few stories I know personally…

Ears, Nose, Toes…

Ears, Nose, Toes…

Why do fingernails grow before children can clip them for themselves?

And noses run. 

Ears need cleaning. 

Hair is not Kleenex, not a napkin. Someone tell her, explain it.

Buy the food. Eat the food. Crap the food. Clean the toilets. Remove trash. Sweep the crumbs. Wipe this. Dust that. Wear clothes. Wash clothes. Fold clothes. 

Clean the tub so that we can clean the humans. So that…

My existence can have a purpose. 

Sprint to stand still. 

Find a chair. Think too much. Cry. Get quiet. Teach me, God. How does a family work?

And why?

And when I get quiet. I do understand.