Flashback: Shoe shopping in Japan

This recent post by a friend of mine about shopping for women's shoes in large sizes reminded me of a story I have to share.

The women in my family all have large feet. I used to wear size 10, though strangely my feet seem to have shrunk to a 9. I don't know how that could happen, but I guess it has. Now, most stores do carry shoes in size 10, but usually there's not as big a selection. For years I used to buy men's tennis shoes, because it was just easier that way.

So one summer I went to Japan with a friend, and we had a blast staying in hostels and riding the trains all over the place. It was awesome. It was also the rainy summer season, and the Vans I had brought were not waterproof. They soaked up with water every day and didn't ever have time to dry, and after a few days of this we realized it was time to buy new shoes.

We found a shoe shop and went in. I found a style I liked, found a worker and asked timidly if he had the shoe in US size 10. He took the shoe and went over to his co-worker and whispered something to her in Japanese. They both started giggling. Then he came back to me and said, "This shoe.... biggest size.... seven!!"

So yeah... I bought some men's shoes.

Weight Worries

Ever since she hit 6 months, Gwena's weight gain has slowed down dramatically. She's always been small, but at least before she was growing well. Now, not so much. At 9 months old she has just hit 15 lbs. When people ask her age, they usually say something like, "How old is she, like 5 months?" She is wearing size 2 diapers and size 6 months clothes.

We've changed enzyme brands, finding that Pancrecarb works better for her than Creon. Because Pancrecarb isn't being manufactured anymore until they get FDA approval, we tried Zenpep, and she didn't do as well on it. Now we're back on Pancrecarb until the pharmacy runs out.

Lately we've been trying really hard to get her to gain more weight. I've been nursing her more frequently, 6 times a day if I can manage it. After she nurses, I give her solids, which I've now begun to add olive oil to to add extra calories. She's very active and loves to crawl, stand, and bounce, and I guess it's going to take a lot of food to overcome all that calorie burning.

When we go to CF clinic, I feel like I'm going in to take a midterm or something. It feels like it's my personal achievement or failure if she has or hasn't gained enough weight. When the dietitian tells us she needs to be gaining more, it feels like I'm being scolded by a teacher for slacking. Right now, my deadline is July 14th, the date of our next clinic visit. I have until then to try to get Gwena's weight up, so I don't get an F.

I wish I didn't feel so guilty when she doesn't gain enough weight. I know I work hard every day to feed her and give her her enzymes and other medicines, but it still feels like I'm the one to blame even though I know it's really CF's fault. I don't want to blame myself for the effects of this disease. I'll just keep fighting CF as hard as I can every day. I'll do all I can, and then I'll do even more. Hopefully on July 14th, when I lay her on the scale, we will get an A+!

My Linguistic Hypocrisy

Gwena has been babbling for a few weeks now. She started with "ma ma" and later moved on to "la la" "ba ba" "da da" and my favorite "blah blah".* Now, I am well aware that she isn't actually talking yet. "Mama" was not her first word. This is what logic and my knowledge of linguistics and language development tell me. But I won't deny it melts my heart every time she says it!

"Mama" means the same thing in many different languages. It's the first thing most babies say, not because they're talking about their moms, but because it's simply one of the easiest sounds for babies to make. Of course, the moms then interpret it as referring to themselves! Who else would the baby be talking about?

I always thought this fact was funny... I thought other moms were silly when they'd say their 6 month old had said his first word, "mama".* Yet now when Gwena says it, I find myself responding!

"Mamamamamama!"

"Aw, I'm right here baby."

"Dadadadadada!"

"That's right, daddy's coming home from work soon."

I know she doesn't attach meaning to those sounds yet, I know she isn't talking! Maybe I'm just so starved for human interaction from staying home all day that I'm willing to pretend she's talking. Maybe it's an instinctual maternal reaction. Maybe that's how she'll eventually learn to associate the meaning with the sound. In any case, I feel like I'm betraying all my linguistical education.

Jon laughs at me every time I answer her. "She's not talking about you, you know."

But I can't help it, her babbling is just so cute and it's fun to have "conversations" with her. So I'm not going to try to stop, I'm embracing the motherly silliness!

*Oh yes, I put those periods outside the quotation marks on purpose. Long live the Campaign for Typographical Freedom! (If you don't know what that is, please read The Great Eskimo Vocabulary Hoax by Geoffrey K. Pullum!)

Graduation Story

Graduations are super boring. I always think it shows you really love someone if you're willing to endure the boredom of attending their graduation. Well, I really love my little sister, so this past Sunday we all went down to La Jolla to watch her graduate. I didn't die of boredom, mostly because Gwena kept me busy. She decided it would be really fun to spend the entire time climbing back and forth between my lap and my older sister's.

A lot of graduates had written jokes or messages on their name cards. Things like "Mary I can't believe it's so cold Johnson" and "James Danger Smith" were read, and there were not a few "Andrew I love you Mom and Dad Chang"s.

Then came the highlight of the evening. The woman reading the cards said, "Amanda I love you Mom and Dad, die!" Yes, I know, it's probably spelled "Dai" but that's not how we heard it... there was an amused and horrified pause and then the entire audience cracked up.

Best. Graduation. Ever.

CF Sucks

That last post was how I think about CF when I'm in my happy and hopeful mode. But I won't lie, as much as I try to keep up a good attitude, I can't do it all the time. CF sucks! As much as I hope Gwena will stay healthy for a long time, I know that she may not. Since I joined the online CF community earlier this year, two girls with CF that I knew of have died, young women in their twenties.

So far for Gwena, CF means enzymes, albuterol, saline, checkups, coughing, Haemophilus influenzae infections... but I have read about all that CF can mean and all that might be in her future. Pseudomonas aeruginosa, Burkholderia cepacia, home IVs, hospital stays, G-tubes, PICCs, Ports, bronchoscopies, sinus surgeries, hemoptysis, oxygen, lung transplants..... so many things and I hope she never has to face any of them.

Yes, I do try to keep a positive attitude, but it's hard to be positive all the time. There is so much to fear that sometimes it is overwhelming, paralyzing. Most of the time I don't dwell on these things because I don't know what the future may bring, and we may never have to worry about any of this. I will do my best to never let Gwena see the times the fears and worries do overcome me, and to focus on being thankful for how healthy she is now, rather than dwelling on the possibilities of her future.

But sometimes, it's hard.

What is Cystic Fibrosis?

When Gwena was about 2 weeks old we finally got the phone call with her genetic results - she did have CF. We went to her first CF clinic visit that week and started her on her medicines and treatments. At that visit, she was almost 3 weeks old and had lost 5 oz, she was down to 4 lbs 8 oz. After getting on her enzymes, she gained 2 oz a day for about the first week.

But I'm getting ahead of myself. First off, for those who don't know... what is cystic fibrosis?

CF is a genetic disease that causes the body to produce a thick, sticky mucus that causes problems in various parts of the body, most notably in the lungs and digestive system. The mucus builds up in the lungs and leads to life-threatening infections, and it obstructs the pancreas, stopping the enzymes that are needed to digest food. CF is a relatively rare disease, with 30,000 people with CF in the US and about 70,000 worldwide. As recently as the 1950s, children with CF were unlikely to live long enough to attend elementary school. Now, the median life expectancy for those living with CF is 37 years, and for those born today it is likely to be even higher.

Gwena has cystic fibrosis, and there is no cure! There are, however, many amazing drugs and treatments in use now or in development that will help her fight this disease and extend her life. She takes enzymes every time she eats, to allow her to break down and digest her food. She has breathing treatments twice a day to thin and loosen the mucus in her lungs. Without these treatments, I know she might not even be here today. I will always be so grateful for these medicines, and thankful to God for the extra time Gwena has been granted. I pray that a cure will be found for Gwena and for all those with CF, and that my girl will live a long and healthy life!

Babbling Baby

This is my favorite video of Gwena so far. She shows off some of her expert babbling! And she does her "Danger, Will Robinson!" arms. And tries to eat a teddy bear's brains. I'm so proud!

Playing and Babbling from Kelly Omahen on Vimeo.

Flashback: Birth Story

The story continues from my previous post!

Jon and I had been preparing to have a natural, unmedicated, low-intervention birth. We read books, took a Bradley Method class, and practiced relaxation techniques. Well, things didn't quite go as we had hoped.

At one of our ultrasound appointments near the end of my pregnancy, it looked like the baby's growth had slowed down. We started doing non-stress tests and amniotic fluid checks, and every time we came in the amniotic fluid was lower, and lower, and the baby was definitely measuring small. On September 17th the fluid level was below 5, and they recommended an induction the next day, at 37 weeks. We talked it over, consulted with our childbirth instructor, and asked for another fluid check, which this time was below 3. I desperately did not want an induction, knowing that there would be greatly increased risks of interventions, fetal distress, and c-section, but we agreed that there was now a medical need for it.

I was admitted to the hospital for the night, and my OB placed a foley bulb to ripen my cervix overnight. At 7am they started Pitocin, and at 9:30 my OB took out the foley bulb and broke my water. The nurse gave me low doses of Pitocin, gradually increasing it and then turning it off to see if my body would take over. In the afternoon, it worked! I didn't need any more Pitocin, my body was able to take it from there. After some decelerations in the baby's heart rate, they put in a tube to pour fluid back in.

I started to have very painful back labor. Earlier in the day I had been able to walk around, but now the discomfort from everything I was hooked up to combined with the back pain made me prefer to stay put. It was hard to use the relaxation positions we had learned, because the monitors would slip and the nurse would have to come in and fiddle with them to find the baby's heartbeat again. Jon was an amazing coach and helped me through each contraction.

My OB went home and was replaced with the on-call OB. She came in around 9pm and checked me, and I was at 6cm. I was elated to have progressed so far, but the new OB told me I hadn't made much progress, and maybe I should get an epidural because it might speed things along. Yeah right!! Thanks for the vote of confidence, and for ignoring my birth plan! I told her no and she left, saying she'd be back to check on me. Shortly thereafter I went into transition, and before the OB even came back I was pushing.

I was told not to push until the doctors arrived, but we ignored that and I pushed anyway. The baby's heart rate was having decelerations again, then they lost it on the fetal monitor so they put in a fetal scalp electrode. I heard someone ask the OB, "Are you going to try vaginally??" She answered "Yes" but that question had told me how close they were to doing an emergency cesarean on me, so I pushed as hard as I could and in just a few contractions, our baby was born. She was placed on me for only a moment while they had Jon cut the cord, then she was taken across the room to be checked out by the team of neonatologists that had attended the birth. They took some of the cord blood to do a genetic test to determine whether she had CF. The OB stitched up the two tears I had acquired from all of that overly-hard pushing.


Our little Gwena weighed just 4 lbs 13 oz, and was born at 12:59 am, September 19th (Talk Like a Pirate Day!). Her Apgars were 8 and 9. They gave her back to me and let me warm her with skin-to-skin contact. They wanted to take her to the NICU for observation, but we asked that if nothing was wrong that she remain with us. As hard as they looked to find something wrong with her, they just couldn't! During the next two days we would spend at the hospital, they checked her blood sugar, her weight, jaundice levels... and everything was fine.


The week after she was born, Jon finally found a new job! Everything seemed to be going well. Our only clue that something might be wrong was her frequent poopy diapers. It wasn't until more than 2 weeks after the birth that her genetic results came back, showing that she did have CF.

We ended up with many interventions during Gwena's birth that we had hoped to avoid. However, I am proud to say I made it through without an epidural or any other pain meds. I believe if I had gotten an epidural, that since it would have slowed my labor and taken away my control of pushing, it is very likely I would have ended up with that c-section. I am also convinced that with drugs in her system at birth, Gwena would not have done so well and would have been taken away to the NICU.


Even though we didn't have the birth we had hoped for, and there are a couple of things I would do differently if I had it to do over, I am satisfied that for the most part we made informed decisions and did what we believed was best for Gwena's safety and for mine!