Wednesday, July 24, 2013

Life and Death: Revisiting Asiri

Faithful readers may remember that I took the time 2 days before I delivered my son to write a blog post about the efforts being made to finish the maternity clinic in Asiri (a village in Ghana). I said that I would keep you all informed as the campaign moved along.

The campaign has been moving along, 
but it has stalled and Asiri needs your help!

In my last post regarding Asiri, I quoted my friend Jasmine Staff. Jasmine is in Asiri and sees the need for this maternity clinic firsthand every day. My words cannot bring the light that this campaign needs; not the way hers can. So forgive me, but the bulk of this post will be her words. 

"Two days ago there was a funeral in the village for a 22 year old Asiri girl who died from a botched abortion. The same day I helped deliver a healthy baby girl - Ama - in the dark on the floor of the TBA's home.

Both of these situations can be prevented or changed for the better. The girl could have employed family planning methods, thus preventing pregnancy and her death. The baby could have been born in a clean, well-lit, stocked clinic under the supervision of a doctor and trained midwife. This is the reality that Asiri's maternity clinic will create once it's built." 



I cannot ignore this. My plan had been to avoid writing and publishing this post until we were down to 4 or 5 days remaining - believing that the urgency at that point would help convince people to make their pledge to the campaign immediately. After all, how many times do we see a Kickstarter or Indigogo campaign and tell ourselves, "I'll do it later. It's still got 20 days.", right? But I can't do that. People are dying. 

Please visit the campaign and pledge what you can. There is just one week left and they still need almost $9000 in pledges. Think ahead: What about that friend or loved one who is IMPOSSIBLE to shop for? They're going to have a birthday at some point over the next 12 months. What about Christmas or any other gift giving occasion? Plan ahead and buy a killer gift from this campaign. Write a note about how this gift made a big difference in the lives of others and include it when you give the gift. It'll mean so much to the person receiving it. Charity is definitely the best gift for the person who already has everything. 




Of Autism and Earrings

What's the point of blogging if you can't expose your weaknesses on the days when your victories are buried beneath them? May as well let it all hang out...





I'm a confident mother, but if there's one thing that shakes my faith in my parenting skills, it's my eldest daughter's Autism. It brings out the things I have yet to learn; it showcases my impatience and my frustrations. Recently, a couple of friends were over at the house and the discussion turned to rites of passage and ear piercing. Zoey said that she wanted her ears pierced; she just wasn't keen to "all that pain". This did not sit well with me. My guests and I went out of our way to explain how temporary and slight the pain would be - that if she wanted her ears pierced, she should do it and accept that the pain would pass quickly. Our friends even went so far as to promise to go with her and to support her through it. She lit up and her decision was made.


Within a week, we found ourselves at the mall with my mother. I walked into Icing (which is like Claire's) looking for a hair accessory and Zoe saw the "Free Ear Piercing" sign. I told her that we could do it now if she wanted. She agreed. I asked her if she was certain; she was.

Or, at least, she was until we had everything set up and it was too late to turn back without forfeiting both the $50 for the sapphire earrings she'd selected and, much worse, sacrificing the tiny bit of bravery she's worked so hard to find within herself.

I had to beg, plead, and generally make a devil of myself in order to work our way through it, but we survived. I know that poor sales girl had thoughts of calling mall security to report me. I must have sounded like a mad woman. By the end, I was cradling Zoe's head in my hand with my face pressed hard against hers, whispering in a near yell, "Don't you let it make your decisions for you. You're so close. Don't let it take this from you." while she cried back at me, "I'm not brave. I'm not brave at all."

It broke my heart.

If she weren't an exceptional child and an exceptionally brave one, to boot, I doubt I would mind. But she is. She is so many wonderful things and the bravery she has shown when facing adversity? Oh forget about it! If I ever manage to grow up, I want to be just like my Zoey. We lose pieces of her life to Autism. It's unavoidable. There are things we must grieve. There are days when I'm reminded that she might never move away from home. I love having her near, but I mourn the life that she will miss by hanging on to us. In that moment at the mall, I experienced my own fears. I could not let her fail. It wasn't my battle to win or lose, but I could not accept the loss. I broke. I started making threats. They were empty and we both knew it. "I'll just have to hold you down and force it. You know I can.", "You don't want to have to tell people that you chickened out.", "You'll have to work off the money we wasted on those earrings by scrubbing the bathrooms clean with a toothbrush." I became an ugly person. As much as I wasn't myself, I have to admit that the ugly person I became is a part of who I am. Sometimes it's all too much and I can't just let it be. I struggle to identify with the girl my daughter is when she struggles.

9 days have passed and the pain has subsided. She loves having her ears pierced and looks forward to wearing matching earring and necklace sets. She's forgiven me. I have yet to forgive myself. I will find a way to work through it and accept my own apology, but it will take time. In the meantime, I will go out of my way at every opportunity to let her know how proud I am of her. 9 days ago I told her that bravery is not the absence of fear, but rather the decision to succeed in the face of fear. It's my task now to remind her of that and to remind her that she did show bravery; that she is brave.

There are so many things that Autism can take from us, but it can't take the bravery she has already shown. It's a small, dirty victory, but it's a victory. I'll take it.


______________________________________


I'm willing to accept whatever judgements people may have for me. I've been facing them for 12 years. I know that I'm doing my best and that as much as people may think they know what this struggle is like, unless they've raised a child on the spectrum themselves, they don't know. They can't. And that's good. I wouldn't wish it on anyone.

All I ask is this: Before you post a hateful or angry comment, please go to THIS LINK and try to understand that Autism has many faces and almost none of them are what you may think. Thank you.

Tuesday, July 23, 2013

Milking the Bear

July 11, 2013


This morning I had a conversation with a good friend about whether or not I needed to obtain a state ID for my infant before we travel. She assured me that his birth certificate would be plenty of ID and I replied that this was a relief because the idea of taking an infant to the DMV sounds like about as much fun as trying to milk a bear. At the time, the imagery was a touch amusing and incredible appropriate. As the day as developed, however, it’s become more of a tragic summary of the rest of my morning.

Doing anything during a flare up of a neurological disorder: Difficulty: Milking a Bear.

First bear of the day came when I went to my doctor’s appointment to address the aforementioned neurological disorder. The short version: Over the past couple of days, my entire body has been in excruciating pain that does not respond to pain medication at all. Imagine sticking a fork in an electrical outlet... all day... while exclusively breastfeeding a ravenous 4 month old... and trying to relaunch your business... while you’re dieting. I had good reason to want a solution for the pain. Unfortunately, because I’m exclusively breastfeeding, my options are few. Temporary plan: Draw blood. Test urine. Pray surgery isn’t needed. Okay. Fine. Let’s do this.

Having blood drawn by a new (and nervous) phlebotomist when you have a rare blood disorder: Pain Level: Milking an Angry Bear.

The line for the blood lab was long, but not new to me. Having a rare blood disorder means getting used to lines for labs. It’s pretty common. I called my mother (who was kind enough to watch my children - thus saving me from having to wrangle monkeys while dealing with bears) to tell her to go ahead and use some of the frozen breastmilk in the freezer because I was going to be stuck waiting for awhile. When I was called back, I sat down, exposed my arm, explained that the largest vein rolls to the right and the details of my blood disorder. The poor girl almost started crying. I could tell it wasn’t just me - her day had been full of bears, too. Cranky, hungry bears. I told her I was used to needles and I’d be fine. No worries. Except that her nerves led her to jab a needle into two of my nerves and then to push through the vein, miss the vein, and dig around before finally finding a vein that would work. I didn’t want to make her day worse, so I tried to meditate my way through it. I think I would have been convincing if tears hadn’t started silently running down my face after she hit the second nerve.

Accidentally driving past a major PTSD trigger: Stress Level: Trying not to Remember a Previous Day Full of Bears.

Someday I’ll elaborate on this. Not today. Someday. For today, I’ve already thought about it too much.

Picking up restricted medication without your ID: Difficulty: Trying to Find an Invisible Bear.

I got to the grocery and dropped off my prescription. I set about picking up a few groceries while I waited for it to be filled and felt like death as someone else’s baby screamed for 15 minutes in the check out. Let me be clear: I have no problems with babies crying. But when you’re breastfeeding and you should have been home an hour ago for a feeding? Not good. Any baby cries and BOOM. You’ve got a shirt covered in milk and a small amount of pain while you try to make it stop. After checkout, I thought I was home free. Got to the rx pick up window and... no drivers license. I realized my husband has been holding it for me since Tuesday.

Driving home during a PTSD-related anxiety attack without the medication you were supposed to pick up and without your drivers license: Difficulty: Trying to Avoid Police (or, as truckers tend to call them over the CB, Bears).

Long story short, I made it. I nearly burst into tears upon entering my house, but I made it.

On days like this, I miss Xanax and weekly therapy.

Long Live Motherhood! (I wouldn’t trade it for anything in the world.)

Sunday, April 28, 2013

Baby T: He's Here & I'm Back!

I've taken a couple of months off from blogging because my son was born on March 2. I wasn't supposed to deliver until my scheduled cesarean on March 8, but my water broke on March 2 and labor could not be held at bay any longer.

Baby T was 9 lbs 2 oz and nearly 21 inches long. He's healthy and happy and fabulous! We love him very, very much.

Now that he's 8 weeks old, I will start blogging again. Expect new posts within the next week! 








Thursday, February 28, 2013

A Shift in Focus

For the past week, my body has been getting weaker and weaker. The hip pain from January's car accident has left me with one hip that will barely bear weight at all. The scar tissue in my lungs from my triple pulmonary embolism in 2009 is inflamed and makes breathing an incredibly painful struggle. This version of bed rest doesn't include the kind of sitting up time required for sewing, playing video games, or doing much of anything else.


I now face a choice: I can let the pain take me or I can fight it. I'm not the type to let something so negative win. I choose another path: I will fight.


But here's the thing, when you fight against your own pain, you must acknowledge that pain. You must accept it as it is and you must accept it's power over you. I refuse to let the pain become bigger than my will to overcome it.


Question: So how can I possibly fight?

Answer: By fighting on behalf of someone else.


Welcome to the village of Asiri, Ghana. 

Jasmine Staff is working on multiple projects with the Peace Corp in Asiri. This one in particular hit me hard. The risks I face are nothing compared to a typical delivery in Asiri. My situation is hard, but I have options. The hospital I visit a minimum of twice a week has a roof. It has windows. Doors. Electricity. I don't have to worry that they don't have sterile instruments or gloves there.


But THIS is what the only maternity clinic looks like in Asiri. It has never been finished because there simply isn't the money to do it. Instead of arriving at a clean, warm, safe place to deliver their children, the women of Asiri turn to Madame Bisa, their midwife. 


Madame Bisa (seen above, right) has been delivering the babies of Asiri for the past 20 years on the cement floor of her home. 

From Jasmine's website:

"Though this type of delivery has been going on here for as long as the village has been around and is common all over Ghana, there are many aspects of it that are potentially exceedingly damaging and life-threatening to both mother and child. Babies are often pulled out too roughly, causing life-long damage to the child’s body, and aren’t given to the mother to nurse upon delivery. Gloveless fingers inserted into the mother continuously during labour, between the midwife cooking food, caring for children and going about her daily life, readily create infection. Among countless other concerns, there is no testing for diseases, HIV or other STD’s" 

 

This is the fight I choose to take on. This is something I can help change. It's something you can help change, too. I have teamed up with Jasmine to organize a 30 day fundraiser to finish building and stocking this clinic. We are organizing donations and sponsors and will start the full fundraiser very soon.

For now, here's how you can help:

1. Donate! Click here to be taken to Jasmine's site where you will learn more about the clinic and the needs of the people of Asiri. You will also find a button there where you can make a donation through PayPal.

2. Raise funds your own way. Ask yourself what you can do to raise more money and awareness. Are you a graphic artist who could help design a logo for the project? Are you a blogger who could help spread the word? Do you have an etsy shop where you could donate 10% of one day's sales?

3. Join with us. Email me at PontiusPython@yahoo.com to be added to our mailing list for notification when the 30 day fundraiser begins. Let us know if you want information regarding sponsoring the fundraiser, too. EVERY LITTLE BIT COUNTS!


Charity and Jasmine


THANK YOU!

Monday, February 18, 2013

Silver Linings and Nursing Tank Tops


I previously wrote about the car accident I was in recently and how my clothes were cut off in the ER. This experience shook me up and I needed to find a way to cope with the anxiety and memory of what happened. I needed to find my silver lining.


First, you'll need to understand exactly how much damage was done to these clothes. They weren't simply sliced in straight lines or in just one or two places. They were mangled. Very, very mangled. The photo to the left is what was left of my fairly expensive maternity jeans - one of the only two pairs I have owned for this pregnancy. With so little time left in the pregnancy, I couldn't justify spending the money to replace them.



 In addition to the loss of the jeans, there was the loss of my only maternity/nursing bra. I've saved myself a tiny bit of dignity in choosing to include only this photo of the wreckage of the bra. While I would have loved to have figured out a way to save it or repurpose the materials left over, it just wasn't possible.




 The next two photographs show exactly what was left of my camisole. It was rather lucky that I had insisted on removing my 2012 Sundance Volunteers Jacket in the ambulance on the way to the hospital. This jacket would have been impossible to replace 
and was spared (along 
with the sweater top I had been 
wearing over the camisole 
- also removed in the ambulance).


The underwear I wore was cut up into such small pieces that the pieces never even made it home. Thus ends my explanation of why I found the destruction of these clothing items so mentally scarring. This leads us to the big question:

What could I possibly do to carve out my own silver lining here and cope with the stress and anxiety caused by having my clothing cut off? 

It's simple: Salvage what you can, re-purpose what you can't salvage, and learn to accept what you can't re-purpose. I started by acknowledging that the bra was done. It would need to be replaced. I squished myself into a pre-preg bra and (with my loving mother's help) waddled into the nearest maternity shop to buy another maternity & nursing bra.

  
 I accepted that I couldn't salvage my maternity jeans - but I could re-purpose that denim. 

I cut out the back pockets and set them aside for future use in some kind of quiet time or busy book. 


 


After that, I made 5" x 5" and 4" x 4" Quilt Block templates. I also built templates for "pee pee tee pees" and nursing pads. 

I cut out pieces of denim for the tipis and the quilt blocks. 





 Turning my attention to my camisole, I realized that there was a slim chance that I could salvage it. I laid it out and cut off the back portion of the straps. 





 I intentionally left the stubs of the straps intact in the front of the camisole. 


 


  If the cami had fit this far into my pregnancy, I had to assume that it would have been stretched to much too large a size for it to have been worn after pregnancy. This meant I could remove some of the fabric without making the top too small.
I trimmed off the rough edges where the top had been cut in the emergency room. 

 I discarded the scraps and laid out the top so that I could see exactly how much had been removed from the side that was cut all the way through.

I did this by setting the cami out on the intact side and folding it inward, using the back tag and the front strap-stubs as guidelines.
 


After identifying how much fabric had been removed from the opposite side, I used my rotary cutter to remove the same amount of fabric from the remaining side. 


I then set about using my serger to reassemble the sides of the top. 

In order to do this, I placed the two pieces together with the outsides facing one another and stitched down the sides that had been cut. 

The straps would have to be sewn by hand. 



I folded the front stubs leftover from the straps into a loop and handstitched them together. Below is a photo of how the inside of the tank should look after the loop is sewn shut.


The loop should look like THIS: 
 
 ...from the front when it's finished.

All that was left was to put it on like a tube top and pop those little loops over each side of any nursing bra. 

I wasn't sure it would work, but it did! 



 

And just like that, I salvaged my horribly "destroyed" camisole into a flexible nursing tank top that will fit much better than the camisole would have after my delivery

 
 I had been concerned that the back would hang poorly, 
but because I had taken the whole thing in on the sides, 
it doesn't have enough slack to, well, slack.

I washed it thoroughly to make sure that all of the stitching was strong enough to last. Everything held together fine. 

Considering that I originally paid about $18 for this top 
(that was years ago)  
and a good nursing tank top can cost around $30,
I feel really good about this project.   

All in all, I do feel that taking a negative experience and working to come up with a positive solution has helped me to move forward from the car accident. I'm still shaky in cars and it's probably a good thing that I've been instructed not to drive until after I deliver because I'm just too shaky to do it right now, but I'm okay. I don't harbor any ill-will against the driver that hit me. I'm still having some difficulty with trying to think positively about the trauma team that ignored my pleas, but I think that will improve with time. The nursing tank project turned out well enough that I think I may actually adapt more of my camisoles the same way. It's certainly cheaper than running out to buy all new nursing tank tops. It also gives me a good post-nursing excuse to go shop for new camis that will fit my post-baby body shape better. 

If any part of the nursing tank tutorial didn't make sense to you, or if you simply have questions, please do not hesitate to ask in the comments section below! I do check and reply as often as possible to comments left on my blog.   

Thursday, February 14, 2013

What do you mean, "High Risk"?

It's a common question among the bold and a silent glance often held by the timid;

"How exactly is a high risk pregnancy any 
different from any other pregnancy?" 

For one thing, you get used to this.

There are various answers. The various risks are similar to stars - too vast to count. I know what my risks are. I am familiar with the risks of some of my friends and the members of the high risk message boards I frequent online. This does not mean that I can define what risk your friend is referring to when they say their pregnancy is high risk. I can only elaborate on what it means to me.

I was high risk before my son was conceived. After my second daughter was born, I was told that I could not survive another pregnancy. I had come close to a catastrophic uterine rupture and with more scar tissue there would be an even higher chance that future pregnancies would end in my death.

Several years later, in 2009, I had lost a significant amount of weight (around 80 lbs) through diet and exercise and I wanted to have my excess skin removed. I had a Reverse T Abdominoplasty. 4 days later, my husband brought me into the E.R. By the time we arrived, my oxygen saturation was at 10% and falling. Three blood clots were found in my lungs. The medical term: Triple Pulmonary Embolism. Not something many people survive. My recovery took 13 months. This signaled another round of "You cannot survive another pregnancy" discussions with physicians.

My body went through some kind of healing anomaly in Spring of 2011. I can't explain it fully and I can't replicate it. I do know this: After March 2011, the same doctors that had been telling me I could never have another baby started telling me that I could have another child. I saw a specialist and went through a gauntlet of tests. The specialist agreed that I could have another baby.

Several miscarriages and failed fertility treatments dotted the latter half of 2011 and the first half of 2012. Each failure raised the risk for any future pregnancies. When I did conceive, my ultrasound confirmed there was an embryo - and four uterine cysts. If the cysts did not clear on their own, they would have to be surgically removed as soon as I made it to the second trimester. Luckily, the cysts dissolved and surgery was avoided.

Additionally, once my pregnancy was confirmed, so was a mutation in my blood. This mutation is what led to the triple pulmonary embolism in 2009. In order for myself and my baby to survive this pregnancy, at home injections of blood thinners would be needed daily. 

In September 2012, my morning sickness should have started to fade. It didn't. It was determined that while I clearly had Hyperemesis Gravidarum, there was no point in making a note of it because it would not change my treatment in any way. I ended up in the emergency room again where it was found that not only was I dangerously dehydrated, but that I am allergic to Zofran - the most prescribed anti-nausea drug for pregnant women. I would have to manage this extreme dehydration with sports drinks and bed rest.

Despite all of this, fate decided that I needed to be able to understand how much more risky things could get. In January 2013, I spent almost every weekend in the OB/ER. First: Chest pain. Never explained. Second: Car accident. Third: RSV. Fourth: Complications from RSV. I was also diagnosed with Gestational Diabetes.

February came along and I gratefully bid farewell to January. We started the month with a beautiful Open House (Baby Shower). The following week I went into latent labor. As of this moment, I've been having consistent contractions for a little over 10 days. Though these contractions won't stop, they are not advancing my body toward delivery. Basically, I get to tough it out for as long as possible.


Daily Life in a High Risk Pregnancy


Step 1: Take a fasting blood sugar with the monitor seen above. I get up and go to the bathroom, making sure to clean my hands very well. If there's something on my skin when I draw the blood for the meter, it can mess up the results. This is the first part of my day that could lead to an unplanned visit to the hospital. If any one of my daily readings is extremely high or low, I know I'll have to go up to the hospital so they can straighten things out. Assuming that my numbers are okay, I move on to Step 2


Step 2: Heparin injection. I sit up in bed, make sure I've got enough light to read the markings along the side of a syringe, and prep my space. I take out a small glass vial of Heparin, an alcohol swab, and an insulin syringe. I use the alcohol swab to sterilize the top of the Heparin vial and then to clean my hip where the injection will go. I draw 75 cc of air into the syringe and inject that into the Heparin vial. I then draw up 75 cc of Heparin into the syringe. I carefully place the vial back on the bookshelf beside my bed and I find the newly sterilized, relatively unbruised area on my hip. I take a small breath in and exhale as I inject myself with the needle. I count to 15 as I depress the plunger so that I don't do the whole thing too fast. The photo above has been edited slightly so you don't have to see my surgical scars or the many, many bruises caused by twice daily injections of Heparin. I remove the syringe and carefully add it to the thick plastic Sharps container next to my bed.


Step 3: Morning Medications. Using my blood sugar reading as a guide, I figure out what to eat for breakfast. With breakfast, I take a prenatal vitamin and my gestational diabetes medication, Metformin. I do not require insulin, but Metformin has become a part of my morning and evening meals. If I'm having a particularly painful morning, some Tylenol or prescription pain medication may be taken along with the other medicines. I mark the time for a couple of reasons: It's good to know when I've taken my medicine and I'll need to check my blood sugar again in two hours.


Step 4: Take Blood Sugar again 2 hours after breakfast. See Step 1.


Step 5: Lunch. Having gestational diabetes means that I have to consider how many carbs are in my meals. I also need to make certain that I'm pairing my carbohydrates with protein. When I finish this meal, I need to note the time again. That's right; in two hours, I'll be checking my blood sugar again.


Step 6: Take Blood Sugar again 2 hours after lunch. See Step 1. Again.


Step 7: Dinner. See Step 5: Lunch. It's pretty similar, except that this will be my evening meal, so I must also add two Metformin. I try to time dinner to happen around 6:30 or 7 pm.



Step 8: Blood Sugar and Heparin. This is why I try to time dinner. It's a tiny bit more convenient to sit down and do both my Heparin injection (which must be done 12 hours after the morning injection) at the same time as my last blood sugar test for the day (which must be done 2 hours after consuming dinner and my Metformin). 


These 8 steps do not change from day to day. They must be consistent. The Metformin and blood sugar testing didn't have to be added until my third trimester, but the Heparin has been part of my routine since my pregnancy was confirmed.

I must remember to call in my refills for medicines and supplies to the pharmacy early enough (generally about a week before I need them) so that they have a chance to get them in stock. If I have to leave town or be away from home for even the shortest amount of time, it means I will be bringing all the necessary medicines, needles, and other supplies in order to continue this care. Abraham and I ran a couple of events at Anime Banzai this past fall. None of our participants realized that before I entered the first event, I had discreetly given myself an injection in my hotel room. Abe and I wanted to have a "babymoon" in December. We were only gone overnight, but I had to do 3 injections while we were away. Furthermore, we couldn't travel more than a very short distance because I couldn't go too far from the specialty hospital where my son will be born.

Some days include additional steps. On Tuesdays and Fridays, I have non-stress tests. Between steps 3 and 4, I add "Go to Hospital and be monitored for up to an hour" and "try very hard not to throw up breakfast while in the car". Almost every Tuesday includes a visit with my high risk OB/GYN, too. Some of those Tuesday include follow up ultrasounds.

Other things not included in the list above: Having a life outside of pregnancy. I still have my 2 dogs, my 2 daughters, my husband, and my extended circle of friends and family. I don't simply pretend that nothing else exists. If I have to go grocery shopping or to the pharmacy, I have to plan that out and make sure that I can do it safely. How many people have to consider a trip to the grocery store as a "risk"? With my blood as thin as it is, I must be careful that nobody bumps a cart into me by mistake. When I'm out in a crowd, I have to watch out for peoples' elbows and purses. A decent bump could cause internal bleeding and yet another hospital visit. I have to remember that I cannot sample that chocolate treat while shopping - I have gestational diabetes. I also must do my best to make sure that the stress of these added risks does not cause further risk or damage. I nap daily - but not by choice. Living this life is exhausting.

It's been said that being pregnant, building a baby, is like having your body run a marathon every day that nobody else ever sees. If that's true, then a high risk pregnancy is kind of like running that daily marathon while trying to keep the pavement from falling out from under your feet. Nonetheless, those of us slated to have such risks generally choose optimism. My son is a miracle that I do not (and cannot) take for granted. I remember being asked by a friend early on in this pregnancy if I would be having an amniocentesis. Without hesitation, I replied that I would not. My friend's eyes opened wide and she came back with, "But with being so high risk... what if the baby has Downs or something like that?" My mind and heart remained where they have been throughout my fertility and pregnancy experience; "If my baby is born with Downs Syndrome or any other genetic disorder, I will thank God every morning that my child was born at all. I will be grateful every day that this baby wakes up with a beating heart." I meant it then and it holds true now. Every kick, every wiggle - I find it a miracle. Sometimes miracles are painful. Sometimes they're hard. That doesn't change the fact that they are miracles.

My high risk pregnancy is still a pregnancy. It's still a miracle. It's my opportunity to bring my son into the world. It is harder than other pregnancies and I do find that I'm often misunderstood, but all in all, it's worth every moment.

"You're worth the trouble 
and you're worth the pain. 
You're worth the worry.
I would do the same 
if we all went back to another time. 
I would love you over. 
I would love you over. 
I would love you." 

- from "Like Dylan in the Movies"
by Belle & Sebastian


Wednesday, January 16, 2013

The 5 Words Your Baby says from Day 1: Reviewing Priscilla Dunstan's Baby Language

The younger of my two daughters was a cry baby. It wasn't her fault; she was in constant pain due to a heart murmur and an underdeveloped tummy that was (and still is) prone to intense bouts of acid reflux. Things were so bad that for the first 9 months of her life, she could not be laid down flat or even on a wedge to sleep. Momma & Daddy had to take turns holding her upright on our chests in the rocking chair every single night. It felt horrible. Knowing that she was hurting and couldn't explain made us feel helpless. We would have given just about anything to know what she was trying to say.

With those memories flashing through my head as I began thinking about our new baby's first days, weeks, and months, I started scouring the web for ideas on how I could better understand the messages my baby would be sending me. I found this:

 

I was hooked. I had to learn more. I found the Dunstan Baby Language system on Amazon.com and added it to my registry (which I use as my own personal baby-related shopping list). When I showed the clip to my Mom, she said that she loved the concept, but didn't know if she felt it truly worked. She had a hard time hearing the differences in 3 of the 5 "words". The three she struggled to hear were the same three I struggled to hear. The two that I could hear loud and clear were the two that would naturally include other physical signs. 

With a $30 price tag, I decided I shouldn't dive in without more research. Abe and I reserved the DVDs at the local library and watched them together with our daughters. I didn't want Abe to have the same perspective that I had, so I did not show him the Oprah clip before we watched these DVDs and I avoided telling him what the system was all about. 

Watching the 2 disc set (which could easily be put on a single disc) left me quite underwhelmed. Nothing included in the DVDs made me feel better prepared than the YouTube clip had. In fact, I found that I vastly preferred the YouTube clip to the $30 DVDs. Worse still; I still could not (and cannot) clearly differentiate the subtle differences between "neh" (hungry), "Eh" (upper wind/needs to burp), and "Heh" (discomfort). I can occasionally hear the "n" part of "neh" and then figure it out, but everything else is iffy at best. The remaining two words, "Owh" (tired) and "Eairh" (gas), were fairly obvious, but I question whether or not they would be obvious without assigned words to them.

As much as I wanted to find some mystical answer in this system, I didn't. I do intend to rewatch the clip from Oprah after my baby arrives and see if I feel like I've learned something, but I won't be purchasing the DVDs or even leaving them on my registry.

I wanted to get Abe's opinion on the DVDs, too. Here is his review:

Tonight I checked out a Dunstan Baby Language DVD from the local county library. Dunstan Baby Language, more recently going by DBL, is a series of products based around the hypothesis that babies innately try to communicate using 5 sounds, and that by learning and recognizing these sounds parents can take care of many of their babies basic needs before the baby resorts to crying. After viewing the 2 DVDs and conducting some online research, my stance is as follows: Priscilla Dunstan seems to be profiting off of the desperation and uncertainty of parents. 

The cries and sounds exemplified in the DVD seem to overlap with one another. While I make no claim that my hearing is as perfect as Dunstan's, it seems that this is exactly what the DVD makers are counting on. The goal of DBL is to place the idea that the sounds babies make are formed based upon their underlying causes, that these sounds are universal, and that if the efforts that a parent makes to respond to these sounds are wrong, it is a matter of the parent needing to get better at listening. Form seems to be applied to noise, with that noise only being nominally differentiable in any consistent way, and any error is attributed to the user and not the model. The hypothesis, in practice, is almost unfalsifiable and relies largely on confirmation bias. This is evident in the BBS and blog entries and comments of frustrated parents who have bought into the system. Frequently, parents complain of being only able to recognize one or two sounds, often the most general and common of the causes for which an infant would require attention. While watching I found this offensive and reminiscent of faith healing. Unfortunately, there seems to be no James Randi devoted to products designed to bilking parents out of money.

While I found the DVDs distasteful I was unprepared for the company's website, which, while giving off the appearance of well-meaningness, was downright offensive. The site unsurprisingly, and this is not an object of my offense, is geared towards convincing parents to buy DVDs and enroll in training to teach the methods of DBL. This (http://www.dbltrainingcenter.com) may be the latest, though not most brazen, attempt to create a new type of Black Belt Academy. What I find truly objectionable is the attempt to claim evidence and research-based standing while at the same time vilifying and dismissing the very notion of independent research and review. An excerpt:

For 8 years, worldwide research was conducted that finally validated a remarkable idea:
that every baby, of every race, colour, & culture made these same 5 sounds before they 
cried out. And each cry meant baby needed something specifically. No more guessing.

All you had to do was LISTEN. And respond before the crying escalated.

But then:

It’s natural to wonder, Could this baby language be real? 

A cursory Googling with find many thousands of happy mothers blogging & reporting about
their own experience. 

Amazon.comhas over 100 vocal reviews alone, positive & negative. 

Academia is inclined to ignore such unscientific anecdotal evidence. After all, what would an
unqualified mother possibly know? 


It's troubling to me that the company will on one hand claim that their methods have been tested and "finally validated", while on the other dismiss "Academia" and its insistence on repeatable inquiry and non-anecdotal evidence, and do this with an implication of anti-matriachal sexism. DBL, on that very page, goes on to make note of a Brown University study as well as one by The Leading Edge, a "commercial research organisation". Of course, what could an unqualified mother know that isn't better filled in by companies trying to profiteer than researchers that may perhaps be more open to investigative rigor.

The findings of The Leading Edge are summarized as well, and read like the label on a magnetic wristband that spritzes acai extract:
    • 90% of all mothers reported that DBL is valuable and would recommend it to other mothers 
    • 100% of first time mothers reported it was valuable and would recommend it to other mothers
    • Significant increases in maternal self esteem and significant reductions in parental stress
    • Almost 70% of test mums reported their infant settled faster after using DBL
    • Almost 70% felt more confident as a mother and more relaxed and in control
    • Over 50% reported more unbroken sleep for themselves and their baby. 
    • 50% felt more bonded to their baby 
    • 50% believe their baby is feeding better
    • DBL not only helps mothers, but also benefited 2 out of 3 fathers, resulting in reduced levels of stress, greater paternal involvement in the baby’s care, and more positive marital relationships

While they go on to say that they will provide copies of the full reports, and do include some tables charting their claims from these studies, one has great reason to doubt both the methods and findings of these trials, as it seems beyond likely that these studies were essentially a petri dish for the bacteria of reporting bias, publication bias, and expectancy bias. Whether the Brown University testing was to be sufficiently rigorous is itself dubious, but canceling those plans to instead conduct commercial trials which claim the pretense of Brown's methodology seems at least dishonest.

If some parents find that listening for certain sounds in their baby's cries leads them to be more responsive and more confident in their reactions that can have real value, and is not at all an unlikely outcome for adopters of DBL. Parents of infants are desperate to know that they are doing all they can for their baby, frustrated when nothing seems to be working, and eager for answers to the basic question of how to help. They are unconfident, and they are exhausted. It's shameful that DBL has gone so far to take advantage of this.


Have you tried Dunstan Baby Language
How did it work for you?