Well, fuck!

That’s what I said when I read my most recent email from Dr. Y’s nurse:

“YOU DAY 3 LAB WORK CAME BACK AND THE RESULTS SHOW AND ELEVATED FSH AND THE AMH IS LESS THATN 0.03. IT WOULD BE BEST IF YOU CAME IN AND HAD AN APPOINTMENT WITH DR Y. I WILL NOT HAVE ANY APPOINTMENTS UNTIL AFTER YOU RETURN FROM EUROPE. PLEASE CALL ME AT xxx-xxx–xxxx SO THAT WE CAN SCHEDULE AN APPOINTMENT”

Yes, she writes her emails all in caps like that, as if I needed any more reason to feel alarmed.

My AMH is less than 0.03. I didn’t know the test measured amounts that low.

In what feels like another lifetime, I once wrote a long post about what AMH (and FSH and estradiol) mean for fertility.

Here’s a summary of my results the four times I’ve taken these tests. Prior to yesterday, 0.17 ng/mL was the lowest AMH of anyone I know in real life (including my Resolve support group).

  1/26/13 5/4/13 4/24/15 10/8/16
estradiol (E2) 24.6 pg/mL 27.2 pg/mL 23 pg/mL 20 pg/mL
follicle stimulating hormone (FSH) 13.7 mIU/mL 13.5 mIU/mL 9.7 mIU/mL 17.7 mIU/mL
anti-Mullerian hormone (AMH) 0.17 ng/mL 0.22 ng/mL 0.31 ng/mL <0.03 ng/mL

 

I’m feeling pretty hopeless at the moment.

At least I get to go to Rome on Sunday.

When to try again

And now we arrive at the last of our unpleasant decisions following Jane’s passing:

Decision 10: When to try again.

By way of background for those of you who are new to my blog: three years ago, after an early miscarriage followed by 6 months of unsuccessful trying on our own, I was diagnosed with diminished ovarian reserve. I’m a non-responder to stims, having produced only a single egg during medicated IUI, and IVF cycles. Miraculously, we conceived our first rainbow baby C. Samuel spontaneously in between IVF cycles. After C. Samuel was born, we decided to try for #2 via natural cycle IUI. On the sixth month of this, we conceived Jane Margaret.

Some conclusions from our adventures in infertility:

  • I have precious few good eggs left. (One of my doctors predicted that I would go through menopause before age 40…I’ll be 38 next month.)
  • I consistently ovulate one (and only one) egg per month, with or without stims.
  • When we’ve been lucky enough to have one of C’s supersperm catch a good egg, the babies that result are beautiful and perfect (though I can’t say the same for the resulting placentas).  😦

Contrast that with the following advice re: trying again after stillbirth:

  • The American Pregnancy Association recommends waiting several months up to a year to try again after a stillbirth.
  • Dr. R recommended waiting 3-6 months before trying again.
  • Dr. R mentioned a study suggesting that shorter time between pregnancies may be correlated with shorter umbilical cords (part of Jane’s perfect storm), though she acknowledged that the study wasn’t especially compelling.

Having discussed all of these considerations and more, C and I quickly agreed on a decision:

We want to try again as soon as possible! 

We both find the egg scarcity argument more compelling than the emotional self-care concerns. What if I ovulate my last good egg on one of the months that we’re “waiting to try”?!

As it happens, my own body forced a bit of a compromise, since it took 11 weeks for my period to come back after Jane’s passing. My bitchy Aunt Flo showed up on Friday, and on Saturday I got my blood drawn to repeat my CD3 (in this case CD2) bloodwork. Unlike last time, my FSH went in the wrong direction (up to 17.7 mIU/mL).:/

.

At least C. Samuel is optimistic. He busted this song out during a recent visit to Ong Ba’s (Grandma & Grandpa’s) house. Neither C nor I had ever heard it before.

 

The Rainbow Song lyrics:

Red orange yellow green blue purple,

red orange yellow green blue purple,

red orange yellow green blue purple,

makes the rainbow bright bright bright!

.

[Deep breath] Here we go again.

Can we possibly have enough luck left over for another miracle?

How to memorialize Jane

In the first few days after we lost Jane, we were inundated with more beautiful flowers than we knew what to do with. So when I started drafting a Facebook post about what happened, my mom wisely recommended that we select a charity for people to donate to in lieu of sending flowers. C and I talked briefly about a children’s dental charity or organization that supports parents of stillborn babies (either locally or nationally), but we couldn’t agree.

Then C had the idea of starting a fund for a permanent memorial to Jane. He investigated fundraising sites and selected youcaring.com (since it charges lower fees than the more popular gofundme.com). We set up the site with a goal of $2,000 (to cover the cost of a park bench at a nearby city), and shared the sad news about Jane on Facebook. And the money, along with incredible messages of love and support, rolled in…

To date, 149 people, including family and friends and colleagues (and some complete strangers!) have given almost $12,000 in support of Jane’s memorial fund.

We were blown away by everyone’s generosity.

Which brought us to Decision 9: How should we memorialize Jane?

We felt a solemn responsibility to Jane – and to all the people who donated – to choose a meaningful and (semi-)permanent memorial. We investigated several options:

1) A memorial bench. C contacted our city’s department of Parks & Recreation and learned that they “don’t do benches anymore”. It seems the cost to maintain the benches exceeded the income from the benches. (Why not just raise the price of the benches? I guess there’s not a lot of incentive to raise money for park improvements…)

In any case, we moved on to the next city north of here. They have a memorial bench program, at a current cost of about $1600 for a bench. The catch: there are no benches (or spots for benches) currently available. They put us on the waitlist (#32 on the list), and said they’d call us when they get to our name, probably in a few years.

The next city north had benches immediately available, including one “beach site”. The price was about the same: $1650. But we weren’t exactly excited about the idea of driving 40 minutes to sit on Jane’s bench…

Major Research University, where C went for undergrad and I did my postdoc, is only 3 miles away, in the same direction we have to travel to get to the freeway. A handsome and well-dressed young man in the development office was happy to show us what they had available: 9 benches with ocean views available for naming, each at a price of $15,000, plus any required maintenance or repair costs. C and I, along with my mom and sister and our friend R visited each bench and liked several. Our favorite was this one:

img_4428

Our favorite option for a memorial bench for Jane

I also investigated memorial bench options at the Small Christian University where I work. They proved to be more flexible and economical with their bench options than Major Research University. Basically, we could pick any spot on campus (including ocean views) and select the style of bench we want, for about $6,000. The downside was that the campus is 11 miles from our house in a part of town where C rarely visits.

One thing we learned is that none of the memorial benches (or indeed any of the memorials) are truly permanent. Naming rights on benches at Major Research University are guaranteed for 8-10 years, with the possibility of longer. At Small Christian University, they didn’t give a promised timeline, but pointed out that other benches have been around for 20+ years. In both cases, when the bench needed to be replaced, we would have ‘first dibs’ to repeat our donation and get a new one.

2) Our local aquarium. C. Samuel LOVES the aquarium, which is 3 miles from our house (adjacent to, and affiliated with, Major Research University) so that was the next place we investigated. They also had benches available (with the same pricing as the university ones), in addition to a number of other options ranging from a ‘permanent’ sea star plaque ($1500) to a plaque on any of the tanks (prices varied from around $1,000-15,000…per year), to naming the soon-to-be remodeled “aquarium nursery” (the tanks where they display the baby fish; I think she estimated $15,000 for this; I didn’t clarify how long the naming rights would last).

img_4494

The current aquarium nursery. We have the option of dedicating the new nursery in memory of Jane.

The (large) downside to the aquarium is that friends and family members who donated to Jane’s memorial fund would not be able to see her memorial without purchasing a ticket. We moved on to other options.

3) The library. At this point, C decided we could use some help. He messaged our friend M, who works in philanthropy for the public library. She is AWESOME and replied that she would come meet with us the next day with some ideas. Naturally, she first mentioned our local library, which had a variety of naming opportunities, ranging from a reading nook (for $15,000) to the new high tech public laboratory (which includes a walk-up molecular biology lab and 3D printer; for about $100,000).

4) County Parks & Recreation. She also had printed out a 24-page booklet of naming opportunities for the county Parks & Recreation Department. These included baseball fields, playgrounds, hiking trails, sports arenas/courts, amphitheaters, skate parks, splash parks, swimming pools, and community gardens, at prices ranging from $2,000 – $200,000. Awesome and extensive as the options were, they were all 30 minutes or more from our home, in residential areas in unincorporated parts of the county, which we are unlikely to visit regularly.

5) A play structure. M also asked about our local park. We told her how C had called the city already about the bench, and found them pretty unreceptive to memorial gifts. M suggested that she might have better luck, given her position at the library, and asked if we knew what we might want. We told her that we would love to plant a tree at our local park, and/or to replace a play structure. There is a little fire truck play structure that C. Samuel especially loves, and that has seen better days… She said she would try to get through to the right person to see what our options are.

img_4635

C. Samuel, in the fire truck at our local park. Notice the peeling paint and chipped wood.

A few days later, M called us. She had found the ‘right’ person – Tyler at Parks & Rec, and had discussed several options with him. He had told M that the play structures at our local park could use a good paint job, and that if we wanted we could purchase supplies and organize a team to come and sand and paint the structures. C and I were both less than enthused about that idea! Fortunately, he also offered that C. Samuel’s favorite fire truck play structure could stand to be replaced. We also could plant a tree, not in our first choice location (the playground), but in another lovely part of the park. The catch was that our city Parks & Rec does not allow memorial plaques, and would not be open to names or even initials on the new structure or tree. Tyler offered a possible compromise: we could have imprints of Jane’s hand- and footprints embedded in the new play structure.

We loved the idea!

The company that makes the play structures (Kompan) is located in Denmark and gave an initial rough estimate of about $12,000, possibly a bit more. Manufacturing will take a couple months, then they’ll ship the parts here, and Parks & Rec staff will put it together on site. Tyler estimated that it will be put in place in early 2017. To plant the tree, we just need to get approval from the city arborist, and pay the cost of the tree and labor to plant it. Since they don’t do memorial gifts, we will have to purchase the structure directly from the company, rather than making a tax-deductible donation to our city Parks & Rec. They also won’t guarantee a length of time that the play structure will remain in place, but Tyler pointed out that the current structure has been in place since 1996, and that while the current structure is painted wood, the new one will be made of a special composite plastic that should last much longer. He imagines that the structure won’t move until the entire park is remodeled, which there are no plans to do, and several obstacles in the way of (including ADA compliance issues and a very strong local resistance to change).

So, that’s the plan! Here’s the rendering we just got from Kompan showing what the fire truck should look like. We can’t wait!

 

A perfect storm

Last Wednesday, I ran into a mom of one of C. Samuel’s classmates for the first time since we lost Jane. Reflexively, she asked, “So, what happened exactly?” then immediately seemed to regret it, saying “You probably don’t want to talk about it.” I suspect this is the thought process most people go through when they hear our daughter was stillborn.

For the record, I don’t at all mind talking about it.

At the time of Jane’s birth, we knew extremely little. Dr. R suspected a placental abruption: I had no risk factors for stillbirth aside from maternal age; even with the close monitoring that came with going past term, I showed no indicators of an underlying cause; and my labor progressed extremely quickly (a classic sign of abruption). Moreover, Jane came out looking perfect, with no signs of cord injury (the other likely cause for demise of an otherwise healthy pregnancy).

Six weeks after my due date, we went to our follow-up appointment with Dr. R. By then, the results had come back from the dozens of tests performed on me…

The verdict?

Dr. R said that to the best of her knowledge, Jane’s death was the result of “a perfect storm.” I Googled the expression, and found it defined as “A situation where a calamity is caused by the convergence and amplifying interaction of a number of factors”. Sounds about right.

What were the factors converging to result in Jane’s demise?

Dr. R said there were three contributors that we know of, namely:

  • We know that Jane had a small, insufficient placenta, although we don’t know why. Risk factors for this include drug use, high blood pressure, pre-eclampsia, gestational diabetes, advanced maternal age, and infertility. Dr. R said she had looked into the infertility link further, and found that it has only been demonstrated for pregnancies achieved through IVF…so not Jane. The only known risk factor I had was advanced maternal age.
  • Jane had a shorter-than-normal umbilical cord. I’ve learned that the normal range is 35-80 cm, and that Jane’s was 30 cm after being cut. Dr. R freely acknowledged that some may have been lost in the cutting. So definitely on the short side, but not far outside the normal range. She said that a short cord increases the risk of a cord injury.
  • The main vessel of Jane’s placenta contained some “old, organized clots”. Dr. R suggested this may be due to an event that pinched the cord. (More on this in my placental pathology report, reproduced in part here.)

Dr. R suspects one additional contributor to Jane’s death:

  • Dr. R still believes I had a placental abruption. She said she can’t prove it (for example, my test for maternal fetal hemorrhage was negative), but supporting evidence includes my crazy, tumultuous labor (from 1 – 10 cm in less than 2 hours), old brown blood in my amniotic fluid (which was visible upon dilation), and “port wine-colored” blood delivered with Jane in my amniotic fluid.

Would Jane have been okay otherwise?

There’s no way to know if Jane would have suffered from my crappy placenta and blood clots if she had been delivered earlier. She looked perfect at delivery, so…perhaps not.

Was Jane “growth restricted”?

Dr. R said we can’t tell if Jane fit the definition for intrauterine growth restriction (IUGR) or if she was just small for gestational age (SGA).

Was there an underlying cause?

Kaiser did tons of tests on me. All came back essentially normal. I do not have a clotting disorder. I did not appear to have any relevant infection during my pregnancy with Jane. Dr. R promised to send me my test results by mail. (She did, and I summarized them here.)

How could we prevent this from happening in a future pregnancy (assuming we can get pregnant again)?

For any future pregnancy, Dr. R would recommend that I take low-dose aspirin through 36 weeks to prevent clots. (I actually took the low-dose aspirin through the first trimester with both Jane and C. Samuel, on the advice of Dr. Y. Given my test results, she does not currently recommend heparin.) We would do monthly growth ultrasounds, along with additional Doppler scans to check the baby’s blood flow (specifically the cord flow and “mid-cerebral artery flow”). We would do “intense testing,” including a repeat of my blood clotting tests. If anything looked bad once the baby reached viability, we “will act” (that is, deliver him or her early). Dr. R also recommends a scheduled C-section, rather than taking the risk of fetal distress or an accident during labor.

When should we try again?

Dr. R gave me the all-okay physically. She mentioned that some studies suggest that a shorter break between pregnancies correlates with shorter umbilical cords, but she didn’t think the quality of evidence was good. She indicated a desire to talk to Dr. Y more about this.

I’d like to write a longer post on the subject of trying again. Suffice it to say that neither C nor I want to wait long.

Are you going to retire?

Dr. R answered confidently, “Oh I’m going to see this through!” She also shared (perhaps unprofessionally, although I hardly fault her for it!) that she had a dream that we had another, healthy child. I hope her dream proves to be prophetic!

On our way out the door, I handed Dr. R a Thank You card, in which I shared our feelings of gratitude to her, along with a photo of us with Jane:

img_0579

When I got home, there was an email from Dr. R in my Kaiser inbox:

Hi, K and C! I rushed out to catch you but you were too fast and got away. The card was so touching and beautiful! Thank you so very much for the picture. It means so much to me, more than any words can express. I am here for you in any way that I can help. Please feel free to reach out at any time. In peace, Dr R

Tests

After learning of Jane’s passing, I was subjected to a large number of blood and urine tests, and my placenta was sent to be examined by a pathologist. Most of the samples were collected in the hospital (while I was still in labor with Jane, or shortly after). A few more blood tests were added roughly a month later, after I shared some information about my family history (re: blood clots) with Dr. R.

I’m not a physician and haven’t spent a lot of time looking into these tests and what they mean. But on this 2 month anniversary of Jane’s birth and death, I’m parking them here for posterity, and also as an easy way to share them with my physician friends (or anyone else who cares to take a look). I’ll wait to summarize the key takeaways as they pertain to Jane’s death and to any future pregnancies in a future post about our follow-up appointment with Dr. R.

Without further ado, here are all my test results. Results outside the normal range are highlighted in orange. (UPDATE: It looks like the tabulated data doesn’t display on smartphones; I recommend viewing on a computer if you want to see my numbers and/or the standard ranges for each of these tests…)

 

Complete Blood Count

This is a routine test “used to evaluate…overall health and detect a wide range of disorders, including anemia, infection and leukemia” Source

23-Jul 19-Aug Standard Range
HCT 40.6 40.9 37.0-47.0 %
HGB 14.3 13.8 12.0-16.0 g/dL
MCH 32.5 31.6 27.0-35.0 pg/cell
MCHC 35.1 33.7 32.0-37.0 g/dL
MCV 92.4 93.7 81.0-99.0 fL
Platelets, Automated Count 167 188 130-400 x1000/mcL
RBC, Auto 4.39 4.36 4.20-5.40 Mill/mcL
RDW, Blood 13.2 12.4 11.5-14.5 %
WBC’s Auto 14.8 6 4.0-11.0  x1000/mcL

 

Clotting-related tests

One of the risk factors for fetal demise is maternal blood clotting, either due to an inherited thrombophilia, or an autoimmune disease that can lead to a “hypercoagulable state” like Lupus or antiphospholipid syndrome. From what I can gather, the following tests are all related to my tendency to form blood clots.

  • Activated partial thromboplastin time “(aPTT or APTT) is a medical test [used for] detecting abnormalities in blood clotting” Source
  • Fibrinogen is a “glycoprotein in vertebrates that helps in the formation of blood clots…[It is typically] elevated in pregnancy…Low levels of fibrinogen can indicate a systemic activation of the clotting system.” Source
  • Lupus, antiphospholipid syndrome, the prothrombin G20210A gene mutation, and factor V Leiden thrombophilia are all conditions that might predispose me to clotting problems.
  • Cardiolipin antibodies and beta-2 glycoprotein antibodies are commonly tested along with the Lupus anticoagulant screen. According to my Kaiser lab results, “Clinical associations [for cardiolipin antibodies test] include SLE (25-50%), Arterial or Venous Thrombosis, Recurrent Fetal Loss, Thrombocytopenia, Valvular Heart Disease.”
  • Homocysteine is an amino acid. “Abnormally high levels of homocysteine in the serum, above 15 µmol/L, are a medical condition called hyperhomocysteinemia. This has been claimed to be a significant risk factor for the development of a wide range of diseases, including thrombosis” Source
  • Protein C “plays an important role in regulating anticoagulation, inflammation, cell death, and maintaining the permeability of blood vessel walls in humans and other animals.” Source
  • Protein S has a “role in the anti coagulation pathway, where it functions as a cofactor to Protein C in the inactivation of Factors Va and VIIIa.” Source
  • Antithrombin III is a “small protein molecule that inactivates several enzymes of the coagulation system” Source
23-July 19-Aug Standard Range Notes
activated partial thromboplastin time (APTT) 26 25-37 sec
fibrinogen 554 218-441 mg/dL
thrombophilia, 20210G-A, F2 mutation analysis negative negative
APTT 35 23-38 sec All part of the Lupus anticoagulant screen
dilute Russell viper venom induced 36 29-43 sec
Lupus anticoagulant negative negative
cardiolipin IGG, EIA 2.5 <=14.9 GPL units
cardiolipin IGM, EIA 7.4 <=12.4 MPL units
beta 2 glycoprotein 1 IGG 1 <=20 SGU
beta 2 glycoprotein 1 IGM 4 <=20 SMU
beta 2 glycoprotein 1 IGA 3 <=20 SAU
thrombophilia, 20210G-A, F2 mutation analysis negative negative
factor V Leiden thrombophilia negative negative
homocysteine, subst conc, SERP 6 5-15 mcmol/L
activated protein C resistance ratio 1.9 >= 1.9 Factor V Leiden expected to cause APC resistance ratio below 1.9
protein-C activity (actual/normal) 116 95-172 % Factor VIII levels greater than 250% may lead to under-estimation of protein C level
protein-S – functional, plasma, QN 106 50-118 % Factor VIII levels greater than 250% may lower protein S measurements.
antithrombin III activity 109 80-120 %

 

Liver-related tests

I’m guessing liver function is of interest for detecting intrahepatic cholestasis of pregnancy, preeclampsia, HELLP syndrome, or acute fatty liver of pregnancy? Or maybe hepatitis?

  • Alanine transaminase (ALT) and aspartate transaminase (AST) are liver enzymes. “Serum AST level, serum ALT (alanine transaminase) level, and their ratio (AST/ALT ratio) are commonly measured clinically as biomarkers for liver health.” Source
  • Bile acids (including cholic acid, deoxycholic acid, and chenodeoxycholic acid) are “steroid acids found predominantly in the bile of mammals and other vertebrates…synthesized in the liver…[and] aid in the diagnosis of a number of conditions, including … intrahepatic cholestasis of pregnancy.” Source
  23-July Standard Range
ALT 8 <=54 U/L
AST 29 <=30 U/L
cholic acid: 3.7 <= 1.8 umol/L
deoxycholic acid: 1.5 <= 2.4 umol/L
chenodeoxycholic acid: <0.5 <= 3.1 umol/L
total bile acids: 5.2 <= 6.8 umol/L

 

Kidney-related tests

Poorly controlled diabetes is another maternal cause of fetal demise. The following tests evaluated my kidney function and blood glucose levels.

  • Creatinine is “an easily measured byproduct of muscle metabolism that is excreted unchanged by the kidneys”, so creatinine levels in blood rise if kidneys aren’t doing a good job of removing it. Glomerular Filtration Rate (GFR) is the “volume of fluid filtered from the renal (kidney) glomerular capillaries into the Bowman’s capsule per unit time.” Both are measures of renal function.
  • Blood glucose is the level of sugar in my blood. An abnormally high value might be indicative of diabetes.
  • Hemoglobin A1C (HGBA1C) screening measures hemoglobin (the oxygen-carrying protein in blood) that has been modified with a glucose molecule. In the presence of continually high blood glucose levels, HGBA1C builds up slowly over time, so its value gives you an idea of how well blood glucose has been controlled over the past three-months.
  23-July Standard Range Notes
Creatinine 0.46 <=1.10 mg/dL
Glomerular Filtration Rate >89 >89 mL/min/BSA
Glucose, Random 91 70-140 mg/dL
HGBA1C% 4.9 4.8-5.6% >6.5% is diagnostic of diabetes. 5.7-6.4% indicates increased risk for future diabetes

 

Tests for infections

  • Syphilis is a sexually-transmitted bacterial infection. Untreated in the mother, it can pass to a fetus and cause a variety of horrible outcomes including stillbirth. Source
  • Parvovirus B19 (aka fifth disease) is a mild viral disease that may, in rare cases, cause anemia and/or miscarriage. (Interestingly, I found the same said of Coxsackie virus, for example here, which I did get while pregnant with Jane… I’ll have to ask Dr. R about it…)
  • Cytomegalovirus is a virus in the herpes family that typically causes no or mild symptoms. It’s not clear to me whether a causal relationship has been established, but at least a few articles seem to point to a correlation with stillbirth (for example, see this source).
  • Toxoplasmosis is a parasitic infection caused by Toxoplasma gondii, commonly transmitted by eating undercooked foods (like rare steak), or coming in contact with cat poop (for example, when changing the litter box, or gardening). Toxoplasmosis usually causes mild or no symptoms in non-immunocompromised adults, but when it passes from a pregnant mom to a fetus, it can cause a variety of terrible outcomes, including stillbirth. Source

The latter three tests include tests for two different types of antibodies: IgG and IgM. The IgG antibodies are the long-term antibodies that are present if I have ever been infected with the pathogen; these antibodies confer immunity to future infections by the same pathogen. The IgM antibodies are part of the short-term response to an active or recent infection. Their presence in my blood at the time of Jane’s death would indicate an infection that happened during my pregnancy (i.e. one that could have impacted Jane). For more, see this.

As you can see below, it appears I have been infected by parvovirus B19 and cytomegalovirus at some point, but not a recent infection that might explain what happened to Jane. This is somewhat good news, since it means I am now immune to getting these infections in a future pregnancy. Unfortunately, I have not been infected by Toxoplasmosis… which means I’ll be stuck eating my steaks well done in any future pregnancy…

  23-July Standard Range Notes
Treponema pallidum AB, EIA (Syphilis screen) nonreactive nonreactive
Parvovirus B19 Ab IgG: 4.9 <0.9 IgG persists for years and provides life-long immunity
Parvovirus B19 Ab IgM: 0.2 <0.9 probably no current or recent infection
Cytomegalovirus IGG, SER, QN 5.4 <= 0.8 AI IgG antibody to CMV detected which may indicate exposure to CMV infection
Cytomegalovirus IGM, EIA < 8.0 <=29.9 AU/mL A positive test may indicate a current or recent infection.
Toxoplasma gondii IGG, SER, QN < 3 <9 IU/mL
Toxoplasma gondii IGM 0.06 <= 0.549 RFV No serologic evidence of infection with Toxoplasma gondii

 

Immune-related/antibody tests

  • Rhesus disease (in which the mother’s immune system attacks her baby’s red blood cells) is also on this list of possible causes for stillbirth.
  • The Coombs test for autoimmune hemolytic anemia is looking at whether my immune system is attacking my own red blood cells (I think).
ABO and RH blood type A Pos
Crossmatch Result Compatible
Indirect Coombs test: Blood Group Antibody Screen neg

 

Other blood tests:

Fetomaternal hemorrhage screen, aka  Kleihauer–Betke test, is “a blood test used to measure the amount of foetal hemoglobin transferred from a foetus to its mother’s bloodstream.” “Causes of increased foetal-maternal haemorrhage are seen as a result of trauma, placental abruption or may be spontaneous with no cause found…Foetal-maternal haemorrhage is one cause of intrauterine death (IUD).” (emphasis mine) Source

23-July Notes
Adult RBC, Blood 2000 Conducted by counting 2000 red blood cells in my blood
Fetal RBC, Blood 0 None of those cells were determined to be from Jane
Fetal/Adult RBC Ratio, Blood 0
Fetal-Maternal Hemorrhage Volume 0 mL

 

Thyroid stimulating hormone (TSH) is a protein hormone measured to test for hypothyroidism (or hyperthyroidism, but I can’t find anything in a quick Google search about that relating to pregnancy outcomes…) From what I can tell, thyroid disorders may be correlated with fetal demise and/or low birth weight. Source

  23-July Standard Range
TSH 1.8 0.35-4.00 mcIU/mL

 

Drug tests

Smoking and illicit drug use are associated with an increased risk of stillbirth. Source

I should point out that Dr. R gave me two doses of IV morphine while I was waiting for my blood test (and approval for my epidural). So it didn’t come as a surprise to anyone when I came back positive for opiates generally, or morphine specifically. The tests included two sets of screening tests (in which they homed in on morphine), followed by a confirmatory test using gas chromatography-mass spectrometry (GCMS).

Drug screen (AMP, METH, BAR, BZD, COC, OPI, PCP, THC, TCA), Urine, Using test w visual read

23-July Standard Range
THC, Urine negative negative
Phenylcyclidine, Urine screen negative negative
Cocaine, UR, QL, Screening test negative negative
Methamphetamine, UR, QL, Screening test negative negative
Opiates, Urine, QL Preliminary positive. Pending confirmation. negative
Amphetamine, UR, QL, Screening test negative negative
Benzodiazepines, Urine Screen negative negative
Tricyclic antidepresseants, Urine screen negative negative
Barbiturates, UR, QL, Screening test negative negative

 

Opioid Screen, Pain MGMT (BUP, FEN, 6MAM, MTD, OPI, OXYCOD, HDC, TRA), Urine, Automated Analyzer w EIA

  23-July Standard Range
Buprenorphine, UR, QL negative negative
Fentanyl, UR, QL negative negative
Hydrocodone, UR, QL neg neg
Heroin metabolite (6-MAM), UR, QL negative negative
Methadone, Urine screen negative negative
Opiates, Urine, QL POSITIVE negative
Oxycodone, UR, QL, Screening test negative negative
Tramadol, UR, QL, Screening test negative negative
pH, Urine 5.4 5.0-8.0
Specific gravity, Urine 1.01 1.002-1.030
Creatinine, Urine 35.5 >=20.0 mg/dL
Specimen validity, Urine normal

 

Opiates, Urine, Confirmatory GC/MS

Opiates, UR, Confirm morphine detected

 

Surgical pathology

I found the placental pathology report to be the most interesting item in the pages from my medical record that Dr. R shared with me…

FINAL PATHOGENIC DIAGNOSIS

Placental, vaginal delivery

  • Term placenta (40 weeks 6 days), size extremely small (~450 g expected, 225 g actual)
  • Thrombi of mainstem fetal vessels, organizing and old
  • Normal villous features (no increased immaturity, villitis or infarction)
  • Rare hemosiderin deposits within chorion, likely clinically insignificant
  • No evidence of decidual vasculopathy for chorioamnionitis
  • Short trivascular umbilical cord (>50 cm expected, 30 cm actual)

COMMENT

Although the placental weight can vary with maternal constitutional size, 225 grams is truly small and may, or may not have resulted in utero placental insufficiency. The more common causes of vascular thrombi are infection, cord compression and coagulopathy. In view of the short umbilical cord (if 30 cm is the true length), it is possible that there was compromised [sic] due the cord with the onset of labor.

[The report goes on to describe the appearance of the placenta, etc.]

When to return to work?

Returning to my list of decisions I had to make after losing Jane Margaret, one rather important decision was when/how I would return to work. (Before continuing, I should preface this with an acknowledgement of my enormous privilege. I expect this post is where I’ll lose sympathy from many fellow stillbirth moms, not undeservedly.)

Decision 8: When to return to work?

Some background:

I am a chemistry professor at a small Christian university. Privilege #1: This school happens to be in California, the best state in the US when it comes to maternity and paid family leave. Moreover, my college supplements the state-mandated leave (Privilege #2). Since we are on semesters, and my teaching load is 12 “units” per 14-week semester, my school gives us a maternity leave (including disability from the delivery plus paid family leave for the new addition) in the form of a 9-unit course release (10.5-unit for delivery by C-section). So with the birth of C. Samuel, I was fortunate enough to give birth in May, when we were on summer break. This means I got the summer off “for free”, taught only two lab sections (one day per week) in the fall (beginning when C. Samuel was 3 months old), and returned to full time in January, when C. Samuel was 7 months old. The state paid 60% or so of my salary, and my university covered the rest, up to my full salary.

In preparing for Jane’s birth, we decided I would take a small pay cut (corresponding to the 3 units that would bring me to ‘full time’), so that I could take the entire fall semester off from work. The plan was to do some traveling as a family of four; then I would return to work in January (when Jane was 5 1/2 months old). Accordingly, my department offered my usual courseload to part-time and adjunct faculty to teach in my place.

When Jane died, I was faced with an awkward decision. I still qualified for the “disability” half of my leave, but without a baby, I was no longer entitled to the “bonding” half of my paid family leave. In order to remain full-time, I would need to take back courses from the adjunct faculty currently assigned to them (who are presumably counting on that income), and cobble together 9 units of courseload from a combination of an intense half-semester course starting in late August, plus several full-semester laboratory sections. Such a schedule would preclude any travel as a family, and would require that I start back at work full-swing a mere month after Jane’s passing.

I began discussions with the HR folks at my university, exploring what options existed for me to maintain full-time status (and my accompanying generous benefits package, Privilege #3), while retaining some flexibility to grieve and spend time with my family. I learned that I had the option to take a longer leave without pay (an option that we could afford financially, Privilege #4), without forfeiting my benefits, which was good news.

Both the HR director and a representative of the disability office at Kaiser tacked on a strange qualifier in all their discussions about my leave. They said “from when your doctor releases you to return to work.” I ignored it the first couple times they mentioned it. I’d had an uncomplicated vaginal birth. My physical recovery had gone very smoothly – way better than I had expected. Obviously, Dr. R would say I should return to work 6 weeks from my delivery date – right? But the third time I heard “well, see when your obstetrician says you can return,” I decided maybe it was worth asking her.

I emailed Dr. R, filled her in on the background regarding my teaching schedule and the HR director’s statements, asking,

“…I just wanted to check with you to see what you think, so that we can figure out what to do about my leave (whether to take teaching load back from an adjunct, or accept a pay cut commensurate with the additional leave, either of which would be fine).”

Within a few minutes, Dr. R called my cell and told me she would write whatever I wanted, on whatever form I needed her to. I sent her the form and she replied,

“Hi, K! I have completed the form. I have put that your return to work date is 1/1/2017. Please respond if this is appropriate for you. If you decide to return to work prior to that time, we can always amend things. I have found that it is easier to ask for more time off up front than have to keep going back and requesting more time if needed. Please let me know where I can fax the form.🙂 Dr R”

Later, at my follow-up appointment, Dr. R gave me the heads-up that she listed “postpartum anxiety” in my chart to justify the additional leave.

So I’m also privileged to have the nicest OB in the world (#5, in case you’re still counting).

I’ll return to full-time work in January. In the mean time, I’ve been taking care of myself (getting regular massages and mani-pedis); visiting Jane’s grave; writing (this blog, and a long-overdue manuscript); gearing up to give a couple of talks (a guest lecture at my previous institution, a video clip with my collaborators, and a talk to a local American Chemical Society section); and spending time with my family (potty-training, swim lessons, visits to Legoland and Sea World, etc.) In a few weeks, the three of us will travel to Rome on the trip we had hoped to do with Jane.

 

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Jane’s grave on Friday. Grass is starting to fill in nicely.

Caterpillars

I used to think caterpillars were cute little things that transformed into butterflies. Their eating habits only impacted me as the subject of Eric Carle’s charming book (one of C. Samuel’s favorites).

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That was before caterpillars started attacking Jane’s wildflowers.

Our friends S&Q made this beautiful planter for my husband C’s birthday, as a memorial to Jane. They planted wildflowers (seeds of which we had as a takeaway at Jane’s funeral):

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Our lovely memorial planter, pre-caterpillar

This is what it looks like now:

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I declared war on the caterpillars:

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Concentrating hard as I pick out caterpillars with chopsticks

Prisoners of War:

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Eew!

I may or may not have kept the POWs in a small tupperware container until after C. Samuel’s bedtime, and then released them into a mean neighbor’s yard under cover of night…

How to help someone grieving a stillbirth, and Potty Training

To break up the stream of sad posts, I thought I’d make a list of nice things that people have done for us in the hours, days and weeks since Jane’s death. By putting it here, I plan to refer back to this if, heaven forbid, someone I care about has a similar (or even not-so-similar) loss and I am looking for ways to contribute.

Here’s a non-comprehensive list of amazing things people did for us:

Acquaintances, work colleagues, extended family, and friends:

  • Sent an email, Facebook message or text (or several, to check in from time to time)
  • Prayed for our family
  • Sent a card or flowers (to our house or to the funeral/interment)
  • Referred to Jane by name  <3
  • Contributed to Jane’s memorial fund
  • Attended the funeral, viewing, and/or interment
  • Asked to see photos of Jane… and told us how beautiful she was
  • Took us out for a drink or meal
  • Sent a meal or treats (in a disposable container)

Close friends and relatives:

  • Came to the hospital and held Jane
  • Took (so many!) photos of Jane, and of us holding her
  • Visited us at home
  • Helped care for C. Samuel, and our dogs
  • Served as a point of contact (to notify others of what happened, funeral information, etc.)
  • Set up a meal train (on takethemameal.com)
  • Set up a fundraising page for a memorial (on caring.com) Actually, C did this, but I would definitely offer to help someone with it in the future. Gofundme.com also works well. We chose caring.com because they charge lower fees, so more of the money goes to the intended purpose.
  • Maintained a list of flowers, meals, gifts, and memorial donations as they came in; bought thank you cards and stamps; wrote and mailed thank you cards for early flowers and gifts; and addressed and stamped the rest, so all I had to do was write the message and sign
  • Went to Target and Buy Buy Baby (fighting with staff as needed) to return unused baby items
  • Offered to go with us to the funeral home and/or cemetery to make arrangements
  • Hosted out-of-town funeral guests in their guest room or whole house (friends who were out of town)
  • Helped with the funeral and reception (letting people know about it, getting a guest book, designing/printing the program, making seed packets for the guests, coordinating caterers, getting booze, set up/clean up)

 

We also got some lovely gifts that I would suggest to anyone looking for gift ideas:

  • Jewelry memorializing Jane

Tiffany silver initial necklace with ‘C’ and ‘J’ pendants (left), rose gold ‘J’ initial necklace with crystal pendant (top right), and handmade ruby birthstone pinky ring necklace (bottom right)

Silver locket with photo of Jane

  • A potted flowering tree (in this case, plumeria)

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  • A planter box, preplanted with flowers (in this case, perennial wildflowers that were the takeaway from Jane’s funeral; forget-me-nots are another nice option)

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  • Something for the older children (C. Samuel got some sweet toys!)
  • An engraved watch band for dad (from etsy.com)

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  • A pencil drawing (mentioned in my last post)
  • A blank journal
  • A prayer shawl (crocheted while praying for/thinking about the person and their loss, but anything comforting could be nice – like a special blanket or stuffed animal)

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Winston also loves our prayer shawl from Cre8tive Lane

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In other news, we started potty training last weekend.

C. Samuel had been fighting more and more during diaper changes and I was fed up. On Friday, he flat-out refused to let me put a clean diaper on him after removing his overnight diaper, and then announced that he had to poop. I asked if he wanted to go on the potty and he said yes, so I sat him down and proceeded to read a couple of books to him. Sure enough, when he got up, he had pooped and peed in the potty. That sealed the deal for me. Holiday weekend it is!

We are on Day 4 of potty training according to the method prescribed in Oh Crap! Potty Training, and he is doing pretty well, I think. Plenty of accidents (as C put it, “it’s literally a shit show!”), and I have to watch him like a hawk and try to walk the fine line between ‘suggesting’ that he might want to use the potty, versus ‘nagging’ him to do so (which guarantees his refusal!) But in the first three days he only had three complete misses, a number of partial misses, and lots of complete pees and poops in the potty! Just now he came to me, unprompted, and asked for help getting his pants down to poop in the potty. Yippee! Hope he keeps it up at daycare tomorrow…

In trying to potty train C. Samuel, I realize that our dog Lilly gave us a special parting gift in the last couple of months before we had to say goodbye. Namely, she got us used to dealing with pee and poop on the floor. Thanks to Lilly, we already have good reason to get our carpets cleaned (taking the pressure off C. Samuel), and we waited to replace our 10-year-old couch. (The replacement is on backorder until late October, which while originally irritating, we now see as a giant blessing.) Lilly even got us started on our list of potty training must-haves:

  1. Appropriate gear for cleaning up inevitable accidents. In our case, this includes a Hoover FloorMate for the tile floors; a Bissell SpotClean Pro for carpet and sofa; Latex gloves, Clorox Disinfecting Wipes and Lysol Disinfectant Spray (for cleaning up poop accidents).
  2. Piddle pads to protect sofa, carseats and stroller. (Right now we’re using the disposable drugstore kind we bought for Lilly; I also plan to try the fancier Summer Infant ones…)
  3. Elastic waist pants, one size too big, to make them easy to pull up and down. (Still kind of tricky for C. Samuel to get right, but the timeline from realization to urination is too short to be fooling with buttons, even if I’m helping!) We have seven of these, and managed to use every single one yesterday (our first day wearing pants).
  4. A standalone potty chair that can travel from room to room. (See #3 regarding the timeline we are dealing with here. Also, the portable potty chair makes it possible to continue watching Cars or Daniel Tiger through the whole process (see photo below). Without that option, I’d set the odds of C. Samuel independently choosing to walk away from his show to go potty about a million to one.)
  5. A support group of friends who have been through it recently or are going through it. This is the cheering squad for times like yesterday, when kiddo (a) realized he needed to go poo, (b) walked over to the potty and (c) sat down on it before pooping! Wahoo!!! (These amazing friends continued to cheer, even when I added the minor detail that he forgot to pull his pants down first…)
  6. Wine. Lots of wine.

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C. Samuel is a master multitasker. (Also notice the elastic waist pants)

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No need to stop watching Cars to do his business. (That poor sofa has seen better days… And thank God for tile floors!)

Jane’s Funeral

In the last few days, I’ve felt waves of grief during quiet moments. Most times I’ve been alone, but the other night I felt it while at Sea World with a few friends. One was about 8 months pregnant, and I couldn’t help but look at her and wish I could go back to when I was pregnant and Jane was still alive…

I’m choosing to work through my grief by continuing my list of unpleasant decisions.

Decision 7: What to do for Jane’s Funeral? (Like Decision 6, ‘Decision’ 7 was actually a series of decisions.)

a-c) Where? When? And officiated by whom?

The ‘where’ was easy. When I contacted Fr. JP the Tuesday after Jane’s death, he indicated that we should have the funeral at whichever church we felt most connected to. Even though I’ve spent the last two years attending my neighborhood parish, I knew that I felt much more connected to our local Newman Center, which I’ve attended off-and-on since beginning my postdoc in 2006. C and I went through our marriage prep there with Fr. JP (even though I was living in another city at the time), and I had served on the Pastoral Council from 2012-2015.

The timing was a little trickier. Fr. JP would be leaving town in a few days and could do the funeral on Friday, July 29 (It was already Tuesday the 26th), or not until late September (it was July).:/

His colleague, Fr. D (whom I also love; I mentioned him before in my post on infertility and the Catholic church) was currently in Bosnia, but could probably do the funeral the following Saturday, August 6. There were no options in between.

We weighed having the funeral sooner (so Jane would look better if we had a viewing, and could be put to rest without delay) or later (so that family and friends could plan to attend). Several out-of-state friends had already expressed a desire to attend the funeral, and with that in mind, along with the fear of trying to plan a funeral and reception in three days, we decided to go with Fr. D the following Saturday (two weeks after Jane’s death).

d) Details of the ceremony?

This was one of those times when I was grateful to the Catholic church for having rules for every situation. C and I met with the Pastoral Associate at the Newman Center, who handed us a copy of a booklet containing step-by-step instructions for planning a Catholic funeral.

through death to life

(My friend L would be quick to point out the similarities to this gem from Beetlejuice…)

handbook for the recently deceased

We had to make decisions, but they were constrained to manageable bites:

  • Do we want a full funeral mass (including communion) or the shorter funeral service? Since C and his family are not Catholic, we went with the service.
  • Which of 3-10 prescribed options do we want for each prayer, psalm and reading? I read all and narrowed them to 2 or 3 options each, which I presented to C… “This one captures the misery we are feeling right now…; this one mentions being God’s children, which is nice; this one isn’t SO Jesus-y and won’t alienate the non-Christians as much as the others…” We went with Lamentations 3: 17-26 for the Old Testament reading; Psalm 23; 1 John 3: 1-2 for the New Testament reading; and John 12: 23-26 for the Gospel reading.
  • Which songs would we like everyone to sing? Ideally, they are supposed to be happy songs – about resurrection…We went with ‘You are mine’ and ‘I know that my redeemer lives’ (both by David Haas), and ‘Be not afraid’ (by Bob Dufford).
  • Do either of us want to say any ‘words of remembrance’? I couldn’t think of anything to say for this, and the thought of adding public speaking to my list of responsibilities for that day sounded unbearable, so I was advocating that we skip it…but C felt like that was the one part of the service that he could contribute meaningfully to, and he wanted to do that for Jane. I have so much respect for my husband for this. He did a beautiful job.
  • Whom did we want to involve in the service? We wanted to involve as many people as possible – as pallbearers, ‘placing the pall’ on the casket, or as readers. We chose to involve our parents, siblings, and a couple of friends who had gone out of their way to help out, or to be there for us throughout my pregnancy and after Jane’s death.

e) Whom to invite?

My default was just to invite close friends and family. I figured funeral attendance was for the bereaved, and why would anyone want to come to a funeral for a baby they had never met?

Thankfully, my friend S, who was helping us plan, knew better. We had already decided to share our loss on Facebook, and she encouraged us to include the funeral information in that post. She also notified C’s work colleagues, and tagged us in Facebook reminders closer to the day. My colleague shared the funeral information with my university, which resulted in a campus-wide email.

The result was that a shocking number of people came. A bunch of my colleagues – all the chemists, a biologist, a mathematician, a Spanish literature scholar, a sociologist, three academic deans, and my provost. Friends from my postdoc. My good friend’s big time PhD advisor. Friends from high school and college whom I hadn’t seen in years. My college friend, a coworker from my previous university, and my research collaborators all braved the SoCal traffic for over two hours to be there. Several of the other mamas from my infertility support group were there. C had friends who flew all the way from San Francisco and Seattle to be there. Three of his biggest business competitors came too. Our housekeepers came and brought their three kids. Between the guest book, photos from that day, and my memory, I counted 133 people.

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It was surprising, and touching, and exactly what we needed to feel like Jane was loved and wouldn’t be forgotten.

f) To have a viewing or not?

We decided to have a private family viewing on Friday, five days after Jane’s stillbirth, so that my dad could meet her. We figured if she looked okay, we’d go ahead and plan to have a more formal viewing the following Friday, the day before her funeral.

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Damned if her hair didn’t keep looking cuter each time we saw her!

Jane looked pretty good at the private viewing (I showed some more pics in this post), and we found it therapeutic to be with her again, so we went ahead and scheduled the formal viewing for a four-hour window on Friday. A handful of people came – about 20 in all, and we ordered pizza and wrote ‘thank you’ cards and sat with Jane and it was nice. We also had another one-hour viewing shortly before Jane’s funeral for anybody who wanted to see her but couldn’t make it on Friday.

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Jane’s visitation on Friday. While we didn’t hire a monk or chant in a full Buddhist ritual, my in-laws did bring fruit and incense.

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4 hours is a long time, and C. Samuel alternated between watching Octonauts on Dad’s iPhone, chasing his Auntie around the funeral home, and walking with Grandma around the cemetery.

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Third and final viewing just before Jane’s funeral. She looked so sweet and peaceful!

g) Reception?

Our friends S & Q, whom I’ve mentioned several times on this blog, since they are probably the most thoughtful friends I’ve ever had (perhaps the most thoughtful friends that anyone has ever had), insisted that they wanted to take care of the reception for us. Before leaving her job to be a stay-at-home-mom, S was an event planner for the Hyatt. She and her friend (who is still an event planner at the Hyatt) would take care of coordinating the flowers and catering and decorations and alcohol and guest book and memory table and coordinating with the venue… She promised to make it “The Best Shittiest Day Ever!”

We had wine and beer and sandwiches and fruit, and listened to the ‘James Taylor’ Pandora station, and talked, and let the kids run around. It really was the best shitty day.

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Guests contributed their thumbprints to make a memento to Jane. (One of S’s many thoughtful ideas for The Best Shittiest Day Ever)

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The rose drawing at left was a gift from my talented friend (and fellow IF blogger) wheresmywave.

h) Interment

I already wrote a bit about Jane’s interment, with pictures, here. It happened just over two weeks after the funeral. First we had to wait for Jane to be cremated. (In hindsight, we regretted not just burying her body the same day as the funeral…but at the time, we still didn’t know whether we wanted to bury, scatter, or bring home her remains, and cremation let us postpone that decision a bit longer…) By the time we made up our mind to put Jane in the cemetery, Fr. D was leaving town not to return until late September.:/

Fr. D informed me that the interment ceremony didn’t actually require a priest – anybody could do it. As with the funeral, the Church provided a handy guide.  So we decided on a small informal ceremony last Monday, officiated by me. We invited just a few people, five of whom were able to make it at 2:30 on a weekday. I led the group in some prayers, we sang our version of Sweet Baby James together, and then a man from the grounds crew put Jane in the ground, along with a few toys for Jane to play with.

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We visited Jane’s grave on Tuesday, and three more times since.

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Farewell to Lilly

Yesterday, exactly one month after we lost Jane Margaret, we had to say goodbye to our sweet Swiss Mountain Dog, Lilly.

My husband has had Lilly since she was a puppy, over 9 years ago. (He’s loved her longer than he’s loved me!) She has been a loyal member of the family, companion to our pug, Winston, and to C. Samuel, and occasional guest on this blog (for example, here and here).

Yesterday afternoon, Lilly had a seizure. She’d been having seizures and losing muscle control due to a suspected brain tumor. This was the second seizure since we started antiseizure meds in early July, and the first one that she didn’t come out of on her own. C loaded her, panting and non-responsive, into the back of my car, and we drove her to the veterinary specialty hospital, where they gave her phenobarbitol to break the seizure.

We knew we had pushed Lilly past the point of a good quality of life, but after so much recent sorrow, we had a very hard time letting go. The phenobarbitol made her sedated but responsive, which gave us an opportunity to say goodbye.

She will be deeply missed.😦

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Best friends. (Lilly was wearing the cone while recovering from an eye ulcer.)

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Our neighborhood 4th of July parade. Lilly couldn’t walk the route, so we pulled her in the wagon.

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The brain tumor made it hard for Lilly to get up to pee, so we did nighttime diapers, held up with ‘suspenders’ made from my NST-monitor elastic bands.

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Out for a walk. This was one of Lilly’s recent ‘good days’.

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Yesterday morning, C. gave Lilly a new haircut to make it easier to clean up after accidents. She was still giving us attitude even then.

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C. saying goodbye.