Wednesday, 29 October 2008

Stopping Breast Milk Production, or, Lactation Frustration

I wrote this post because when my breast milk came in we were desperate to find something to stop it, and there was so little information available. My doctors had very little advice, and they no longer give shots or pills to dry up your milk production.

Below are my reviews of the different things I tried to decrease my milk production. Something must have worked because my physical discomfort was minor.

Take a pain reliever: You will get some when you leave the hospital.
Verdict: Do it. This is easy and effective.

Binding: In the hospital I was told binding my breasts might help. They gave me a garment to assist me in this process, a pink and blue tube top, but it was so large it barely stayed up and did not provide any pressure. One size does not fit all. At home I used a tight ice pack, and when I wasn’t icing I wore a tight bra with either a sports bra or tank top.
Verdict: Easy to do and almost compulsory when you are icing anyway.

Sage tea: totally gross, like drinking your Thanksgiving stuffing. However, it is easy to access, as sage is a rather common spice, and all you need is a tea ball or strainer to make it. Just fill your tea ball about half way, or put a few spoonfuls in a pot, cover it with boiling water and let it steep a few minutes until it is nice and green.
Verdict: It will taste terrible, but maybe it helps and it didn’t have any unpleasant side effects that I noticed. I would do it again.

Cabbage leaves: the instructions were to freeze cabbage leaves and then apply them directly to your breasts. Allegedly something in the cabbage assists in stopping the milk production. I was also advised to eat cabbage, but I just couldn’t bring myself to do it. The frozen leaves felt nice for maybe one minute, which was as long as they stayed frozen and cool. After that they got warm and smelly. Soon, I smelled like cooked cabbage. Then I could not escape that awful smell. When I took off the leaves and threw them away, the whole room that the trash can was in smelled like cabbage. I swear that I can still smell it on the sports bra I was wearing then, even though I have washed it many times since.
Verdict: This is a bad remedy if you are going to be hanging out with anyone else, or if you dislike the smell of cooked cabbage. I have no idea if it helped and would not do it again because the possible benefits do not outweigh the discomfort.

Ice: My mom and mother-in-law went to the drugstore to find some ice-packs for me. They ended up picking out two reusable packs meant for lower back pain that came with a cloth holder and strap. They worked pretty well because I could secure them in place with the strap, and if I did it tightly enough then it had the double effect of icing and binding all in one. The strap was not terribly comfortable, but I was able to sleep in it, which allowed me stay iced almost constantly. I found that the pack generally lasted long enough to refreeze the second pack. Another good alternative to the holder and strap was stuffing the icepack in a tank-top with a shelf bra to hold it in place.
The hospital recommended using bags of frozen peas because they conform well to the shape of your breast, but I did not explore this option, and am glad I didn’t because the only thing worse than smelling like cooked cabbage would be smelling like cooked cabbage and peas.
The downside of the ice is that you look funny having a big icepack sticking off your chest, and you have to do this for a quite a few days, but at least you don’t smell. You should ice as much as possible, but if you have to go out, as I did for Leah’s funeral, you can take a short break.
Verdict: Fairly easy and only marginally uncomfortable, also, I think this is what helped the most.

Avoiding Hot Water: This is only hard to do when you are taking a shower. I stood with my back to the water as much as possible. Obviously you have to get wet to get clean, but just try and avoid letting the water hit you square in the chest.
Verdict: This is really important. The one time that I leaked a lot was just after a shower.

Having breast milk come in is very traumatizing, as it serves as a constant, painful, physical reminder of your loss. It feels like your body is rubbing salt in your wound. I was not prepared for how difficult this aspect of pregnancy loss would be for me, because I don't think it is something you can understand before you experience it. I thought that after the pain of giving birth, having my breast milk come in would be comparatively easy. However even though it was technically physically less painful, I found it to be much more emotionally distressing.

Saturday, 25 October 2008


At the end of September I posted on the parents' message board of the Luca John Foundation. I felt a little skeptical about how much good it could do because the most recent post that I could find had been put up months before, and only a handful of people had used the board. But beggars can’t be choosers, so I went ahead and left some information about myself and the blog. A little over a week later I got an email from one of the people who started the foundation, a SRPS Dad. Since we made contact he has gone to great lengths to put us in contact with other families with SRPS. We have already received a few emails, and we are expecting a few more.

At the same time that I had initially tried to touch base with others via Luca John, I also sent an email to the SRPS Family Network. Jeff found the network information in Google cache. The website for the network was (at the time) no longer up, and hadn’t been updated in quite a while, but I was able to find an email address and send a request for information. This week I got an email from the organizer, a SRPS Mom, including an attachment with stories from other SRPS families. She explained that the network is a very loose association. They collect stories and give out information when a new family is diagnosed.

It was really nice to know that we are not alone. I have been able to make contact with some pretty amazing women who have lost children to various lethal skeletal dysplasias through this blog, and I love reading their blogs to see how they manage to cope with losing their babies, but none of them have to deal with the genetic problem that we contend against. I just wanted to find someone who went through all of it: the diagnosis, the loss, and eventually the news that it could happen again.

Tuesday, 21 October 2008


We received our pictures from Now I Lay Me Down to Sleep right before we left for a recent trip home to California. We picked them up from Deanna's place and rushed right over to Costco to print them out. We put them all in an appropriately girly album, which we packed carefully in our carry-on, and brought them home to show off to anyone who was willing to look.

The pictures have been so important to us. We look at them all the time. We have loved having our photos in the album, but we decided we needed some on the walls too. Although we have numerous "favorite" pictures, we decided on two to hang on the walls; one for our bedroom and one for our living room.

This one hangs in our bedroom. We love this picture because this is the moment when I first saw Leah. Our photographers captured it perfectly. We love how they captured the three of us just as we were. Jeff carefully cradles Leah in his hands, while I, stunned by the miracle of meeting my daughter, gingerly reach out to hold her tiny hand. We know Leah is a little slimy in this one, as all newborns are, but she is so beautiful.

In our living room we have hung this one. This is our favorite "clean" picture. It captures the absolute joy of the moments we had with our darling girl.

Jeff’s mom framed for us the first gift we received for Leah, a little onesie with a rock & roll squirrel motif.

The caption reads:

Leah Veronica Klug
June 24, 2008 - 1lb. 6oz, 9 ½ inches
45 Minutes of Pure Rock & Roll

Friday, 17 October 2008

Joy and Sorrow

After I gave birth, my body readied itself to care for my baby. But I had no baby to feed or hold, and the physical pain accentuated the loss and added to my heavy burden of grief. My arms felt so light as they cried out to bear the weight of my little one. My breasts filled with milk and ached for having no child to feed. My body demanded an explanation for this subversion of the natural order. It went through the rigors of giving birth, and it wanted its reward. I had nothing to satisfy it with. The best thing I had to hold was the little bear we received from the funeral home. It was just the right size. I slept with it tucked under my arm for days, as I begged God for my milk production to subside, and for my body to stop harassing me to produce a child for it to tend to.

Grief always has a physical component. It slows you down, makes you tired, and takes away your ability to focus. I am thankful for the way God designed us to bear grief. I needed the effects of shock in order to recover physically. The exhaustion and numbness allowed me to sleep, which gave my body a chance to heal. But now that my body is strong, the pain of loss has increased. The dam that my body erected to defend itself from a flood of sorrow has sprung leaks.

Now Jeff and I have to deal with reality, and that reality doesn't include our daughter, and may never include biological children. We have to face that we may go through this again. These issues compound our journey of grief, as really we grieve more than one thing. We mourn the loss of Leah, the knowledge that our bodies create life that can not live, that our oneness does not produce life the way God intended it to, that future pregnancies will never bring the same unadulterated joy that this first one did. Now they will come with a large dose of apprehension.

We believe that God has directed our steps to a different path for creating our family. Making progress down the road to adoption has given us hope for our future, but at the same time it reinforces our losses as it tangibly confirms that our plans have changed.

Last night I slept with my Leah bear again. I hadn't slept with it since right after my milk production subsided, but as I lay in my bed I was overcome with an urge to hold Leah, and that bear is all I have.

Last night we had our first meeting with our international agency, and it looks like we will be officially accepted into the program (we get the final approval next week). I don’t think it is a coincidence that this great joy also triggered feelings of deep sorrow.

Wednesday, 15 October 2008

Not Many Answers

Jeff and I finally got the call from Cedars Sinai confirming that they wanted our DNA for research purposes. While I was talking with our contact there I had a few questions about SRPS. Since Cedars has the most active research on SRPS I thought maybe I could get some straight answers.

Most of what we know about our condition has come from reading case studies on the internet that have been published in medical journals. Although these papers contain some background information and theory, they tend to be very specific to the type of SRPS they are diagnosing and the conditions of the specific baby they examined. They also frequently contradict each other, since groups come up with different theories about SRPS.

I would like to know the incidence rate of the SRPS gene, if the four types of SRPS are actual subtypes or just different expressions within a spectrum, and how many cases of SRPS they receive every year/or have received total. The different case studies provide different answers to all of these questions, so it has been hard to decide what to believe.

I am very curious to know about other families with this condition because I feel very alone.

Our contact at Cedars was not able to give me many answers, although she did direct me to the Luca John Foundation, which was founded by an SRPS family and exists to support research of skeletal dysplasias. Additionally, she did tell me that SRPS might not be one syndrome, but rather a few separate syndromes that look really similar (and hence have been classified together) but that may be caused by completely different genetic mutations, and that these mutations probably don’t interact together. If this is true, and the different subtypes of SRPS are different, then the incidence rate for SRPS (which would have to be divided out among the types) would be even lower, and Jeff and I would be even bigger freaks of nature than originally thought. She couldn’t tell me the number of cases they have or how many they receive each year, ostensibly because of a computer problem. I felt a little irritated that she didn’t offer to get back to me when her computer started working again, but I got the distinct impression that she was annoyed by my questions. That makes me pretty mad, because I am giving them my DNA. They could at least reciprocate with a little information.

Update: Since writing the above post I have been in contact with a few other SRPS families! We are so excited about this development. I will post about it soon.

Monday, 13 October 2008

Beard All Gone

I shaved my beard on dad beard.

I started growing a beard in January after we found out that Amy was pregnant. This was the first time I had intentionally grown a full beard as I have always been a little self conscious of my somewhat patchy and asymmetric distribution of facial hair. However, as I explained to friends months later (after we went public with our expectancy), both Amy and I come from "bearded-dad" families (although my dad was better known for his awesome mustache), so it seemed appropriately dad-like for me to go for it. The ability to cultivate a good beard seemed to me tied to fatherhood.

Baby Jeff with his dad
Baby Amy with her mom and dad
I think it took a few weeks for people to notice, or at least to comment on, my beard, although I suppose that it isn't all that unusual for men to grow beards in January in Chicago. For me, in those months when we were keeping Amy's pregnancy a secret from (almost) everyone, my beard enabled me to tangibly acknowledge the change taking place in Amy’s and my life together.

We reached the twelve week mark near the end of March, so we thought it would be funny to announce the pregnancy on April 1st. We further decided that the fastest way to get the word out in California, Illinois, and beyond would be via Facebook. So, on the morning of April Fools Day, Amy wrote that she was "eating breakfast for two" and I wrote that I was "cultivating my dad beard." My private way of declaring my impending fatherhood became part of the coordinated public revealing.

I hadn't planned on keeping the beard throughout the entire pregnancy. I wanted two things: 1) to be able to grow a beard, and 2) to have a beard in October when I welcomed my child into the world. I figured I would shave it off before summer and grow it back in the fall. After all, who wants a beard in August?

Those plans, like so many others, changed after our first ultrasound in late May.

Leah's dad had a beard on the day she was born; the same beard he grew for her when he first found out she was coming.

I kept the dad beard long after Leah had gone. My beard was a part of my relationship with my little girl, and shaving it would not just be shaving it. Since the beard was a symbol to me, shedding it should be a ritual. I decided that I would shave on the day after Leah should have arrived. So, I shaved on Friday. In doing so I acknowledge the loss that we continue to experience.

My beard will grow back, but it will never be the same.

Saturday, 11 October 2008

Thank You

I just wanted to post a quick thank you to all of you for your comments, emails, facebook messages, cards, and most of all, for your prayers. I wish I had the energy to respond to each of you to let you know how much your words mean to us, but I just don't right now. Thank you.

Thursday, 9 October 2008

October 9th

In honor of Leah's original due date (today, October 9th), we decided to share the slidshow put together by Deanna, our lead photographer from NILMDTS.

To view the slideshow, which is set to music, click on Leah's footprints below.

Sunday, 5 October 2008

It’s My Party and I’ll Cry if I Want To

Today is my 28th birthday. And I don’t feel like celebrating.

I am grateful for another year of life, but this isn’t a season of celebration for me, it is a season of mourning.

Today I should resemble a small whale. I should have an aching back and numerous stretch marks. I should have a bag packed with pajamas and snacks ready to grab and take to the hospital. I should have a crib set up and a dresser full of little pink clothes.

Instead I have a memory box with footprints and blankets, pictures, a scrapbook, and a little teddy bear. It is not a fair trade.

I cannot both deal with the reality of Leah’s death and enjoy this day. And I’m giving myself permission to feel like not celebrating, and to do what I want. After all, it is my party.

A friend of mine sent me some information on Jewish mourning, and it has been invaluable to me as I learn to accept the burdens of sorrow. Jewish tradition requires stages of mourning, during which the community accepts that a grieving person will not participate in certain activities. As time passes, the bereaved person slowly reenters "normal" life. Although I have not specifically observed any of these stages, learning about them has validated many of my instincts and given me the courage to take things at my own pace.

Although I love the book of Ecclesiastes, I have never identified with the "time for everything" section, until now. Someday it will be our time to laugh and to dance. For now, it is time to weep and to mourn.

Ecclesiastes 3

1 There is a time for everything,
and a season for every activity under heaven:

2 a time to be born and a time to die,
a time to plant and a time to uproot,

3 a time to kill and a time to heal,
a time to tear down and a time to build,

4 a time to weep and a time to laugh,
a time to mourn and a time to dance,

5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

6 a time to search and a time to give up,
a time to keep and a time to throw away,

7 a time to tear and a time to mend,
a time to be silent and a time to speak,

8 a time to love and a time to hate,
a time for war and a time for peace.

9 What does the worker gain from his toil? 10 I have seen the burden God has laid on men. 11 He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end. 12 I know that there is nothing better for men than to be happy and do good while they live. 13 That everyone may eat and drink, and find satisfaction in all his toil—this is the gift of God. 14 I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere him.

Friday, 3 October 2008

You've Got Mail

Today, yet again, I opened my mailbox to find a BabiesRUs catalog. Since Leah's original due date is fast approaching we have been receiving an increased amount of baby-related mail. Tiny diapers with cards reminding us that we're "almost there," coupons to entice up to stock up on baby supplies: you name it, we get it, and we don’t want it.

If only I had never given my name to those people at Mimi Maternity. Of course, at the time I had no reason to suspect that I wouldn't want to receive samples and coupons. I was passed the 12 week mark and starting to get pudgy. My sister Emily and I were out shopping and having fun trying to find cute maternity wear. I had no reason not to give them my due date and get on a mailing list. Had everything worked out we would have been excited to be getting all this junk in the mail.

For a while I had stopped getting the mail at all, because getting the ads and catalogs was too emotionally disruptive for me. Now that I am doing better, and (this week) waiting for a packet from our adoption agency, I am checking the mail again. Usually I'm fine with whatever mail we receive, maybe a little sad, but when I saw that catalog I was mad, because I asked for them to stop sending it a long time ago.

I have tried to get my name taken off these lists by calling numbers and punching in my address...but it doesn't seem to be working. Today I had to call and speak with a customer service agent to have my address removed, since I clearly can't rely on automated systems. She asked why I wanted to be removed from the list, and I said "My baby died and I can't take getting your mail." Then I totally lost it. She felt really badly, and issued a complaint on my behalf. I just hope it works. There should be an easier way to do this.