Joon and Penny.

Joon is almost 100% back to normal now. She's talking all the time, she just pronounces some things weird, like she has some kind of accent. I'm so so so happy to have her back the way she was before. Every days she says funny things and smart things. We have great conversations. The other day we were talking about mammals, and how they all make milk for their babies. She listed a bunch of different animals, telling me which ones make milk, and which don't. She asked me if monsters make milk, and I said I didn't know, and we debated whether or not they were mammals. She says she wants to climb the mountain like Captain Kirk. She keeps referencing Futurama.

Joon started preschool a few weeks ago, and she's doing great! She's really enjoying it, and I think it's going to be good for her. She brought home her first Scholastic order forms, and I want to order her a bunch of things, but sadly we can only afford one cheap thing. Every day, they learn about a different color, and they're encouraged to wear that color. They do crafts and learn new songs, and Joon is always so excited to tell us about everything she did at school.



Penny is growing crazy fast. She's doing all sorts of new stuff every day. She's grabbing things pretty well now. She can get toys into her mouth. She is desperate to get food. Every time there's food nearby, she tries to get it. She also rolls around constantly. She generally doesn't like being on her belly, but she still rolls onto her belly within minutes of being put down on her back. She's having problems sleeping now, and I think it's because she's teething. She's making all sorts of noises, and when you say Hi to her, she usually responds with a big "Hiii!" She can sit for a few seconds with her upper body propped up on her arms.

We went to a hot air balloon festival, and Joon was pretty excited about it. Penny also seemed interested in the big brightly colored balloons.



On Friday, my mom and I took the kids to Helen Hunt Falls. We hiked through the forest for a couple of hours, and played in the stream.



Then we took a quick trip to the zoo.



Joon turned three this past Wednesday. We had her birthday party yesterday, and it went well. Not many people showed up. Joon liked all the presents she got. We gave her a Dorothy the Dinosaur costume, a Wags the Dog costume, a plush Shifu from Kung Fu Panda, and a set of pots and pans for her toy kitchen. My mom gave her some toy food and a bunch of books. She also got a puppy Play Doh set, a mermaid playground bath toy, a pottery wheel with clay, and this fashion thing where you mix and match outfit parts and trace them.





Joon requested a puppy cake, and my mom made one for her. Joon and I made a pinata together. She wanted it to be a blue puppy, so that's what I made. But then it ended up being just Joon and one other three year old here, so we decided not to break the pinata, and just dumped out the contents and let them take what they wanted.

Crayons

Yesterday, Joon and I made crayons. Well, actually we just remade crayons. They were already crayons to begin with, we just modified them.

A few weeks ago, Walmart had school supplies on sale. Crayola crayons were just 25 cents for a pack of 24. I picked up four packs.

Joon helped me peel the paper off and break the crayons into pieces. I think this was a really good exercise to help her rebuild her fine motor skills.



Joon picked out color combinations, and put them into cupcake liners.



After a few minutes in the oven, the crayon pieces lost their form and began to melt together. I took the pan out and let them cool for a few minutes. After they solidifed, this was the result:



We only used half of the crayons for this batch, so we'll be able to do it again later. I think next time, I'm going to mix the colors up more.

Talking!

Joon has had a language explosion the last two days.

On Tuesday, she had her last follow-up appointment at The Children's Hospital. The doctors said she was doing great, and they said we can wean her off of the rest of her medications. That day, she pointed at Penny and said "Penny." She also said hug and kiss.

Yesterday, she started off strong, saying butt, belly, hands, and feet. She chanted these words throughout the day, and added in several other words, including many more body parts, and lots of animals.

Today, she said even more. She was naming things left and right. Animals, colors, objects, etc. She was talking all day. She even said some sentences. She started off with really simple sentences, like "I'm a cat." By the end of the day she was saying things like "The frog wants to look at the llamas."

She's talking much slower than she used to, and it's like each syllable is a separate word. She's also pronouncing things a bit differently. Her vowels are a bit odd, some words sound like she has a British accent. But she's really making astounding improvements. It won't be long until she's back to her normal self. I'm just amazed at her strength and pluck.

Happy Baek-il, Penelope!

Penelope is 100 days old today!

It's a Korean tradition to celebrate a baby's 100th day of life. In the past, many babies didn't survive through the first few months. If a baby made it to 100 days, they would likely make it to their first birthday. If a child made it to their first birthday, they had a good chance of surviving to adulthood. So a long time ago, it became customary to wait until the baby was 100 days old, and have a big party. Babies are dressed in the traditional Korean dress, called a Han-Bok, and displayed with lots of fruit, rice cakes, and other food.

Three months!

Penelope is three months old!

We earned this ribbon:



1) Baby Name and Age: Penelope, three months
2) Weight/length/clothing size being worn: She's wearing mostly 3-6 months, and some 6-9 months.
3) Food! Formula? Breastmilk? Combo?: She's 100% breastfed, she's never had a bottle.
4) Sleep habits: She sleeps great! Most nights, she sleeps about 10 hours straight, then gets changed and fed, and usually sleeps another hour or two.
5) Is baby on a schedule? If so describe: Yeah, we wake up in the morning, get changed and fed, then play for a few hours. Take a morning nap, play for a couple of hours, take an afternoon nap, play for a few hours, and then go to bed.
6) Whats driving you crazy, if anything: Nothing much. She hates being in a car seat.
7) Milestones of course: Sleeping through the night, rolling all over the place, babbling like crazy, teething something fierce, reaching for and picking up toys, sucking her thumb.
8) How are you doing in general: Pretty good, considering how crazy things have been.
9) Are your health and weightloss concerns going well?: Alright. I've lost about half of the weight. I'm not worried about it.
11) Pictures:

One week:



Three months:

First week home.

Things have been busy around here. I've been working on writing this for a week.

This whole ordeal we've been going through has brought us so much love and really showed me how awesome people are. I am so amazed at all the support we've been receiving. I had several friends bring us meals while we were still at Evans. Two of my friends even offered to take Penny for a while and nurse her because she doesn't take bottles. People sent cards, balloons, and packages. Friends called, visited, invited me over to talk, and offered hugs and ice cream. I've received hundreds of comments from random people wishing Joon well, and countless people have prayed or chanted for her.

And then there were all the volunteers at the Children's Hospital. Almost every day, kids came around with a cart, giving away coffee, tea, and popcorn. One day, they came by with wagons full of donated blankets, and Joon got a Nemo quilt. We had many visits from the super sweet dogs in the Prescription Pet Program. A Harley Owners Group hosted some pizza parties, and a barbeque where they let the kids sit on their motorcycles. And one day they even had a massage therapist giving free massages!

A lot of people have asked if they can do anything to help us. Well, I think the best thing would be to send a card or letter of thanks to the wonderful doctors, nurses, and other employees at the Children's Hospital. Or if you're crafty at all, consider making a blanket and donating it in Joon's name. If anyone does make a blanket to donate, I'd love it if you'd snap a picture and show me.

The address for the hospital:

The Children's Hospital
13123 East 16th Avenue
Aurora, CO 80045




Joon got discharged from the hospital last Monday. It's so great to have Joon home. She's so much happier here, and that helps her recovery. It's so nice to be in our home, sleeping in our own beds, and making our own meals. Joon is glad to have all of her books and toys (including her new kitchen my mom bought her). She was excited to see the cats and fish and turtles again.

Joon's doing great. She's pretty much back to normal now. She's walking normally, running, jumping, going up and down the stairs, etc. She's eating and drinking. She's just having a bit of trouble with her fine motor skills, and she's still not talking yet. She's babbling a lot, and trying to learn to talk again. I'm still trying to get her speech therapy set up. Tricare is being stupid about it and making it a huge hassle.

Joon still has her PICC line in, because she had to get two more doses of rituximab and that has to be done through the PICC. We have to flush it a couple of times a day, and have to have a nurse come out to change the dressing and everything. They sent us a big package of supplies, hundreds of syringes and tiny bottles of saline and heparin. It seems so wasteful to me that the syringes are all single-use. I understand why they can't be reused with the PICC line, but it's still a lot of syringes to be throwing away.

On Wednesday, we had to go back up to Denver because Joon had an appointment with the rheumatologist that's going to be in charge of her care now. One of the med students that worked with Joon when we first got to the hospital is now with the rheumatologist, so she knew how bad Joon was before. They were pretty stoked to see how much Joon has improved. The rheumatologist said she's worked with about 10-12 kids with NMDA encephalitis, and they had the same treatments Joon has been receiving, and all had complete recoveries. She's really optimistic about Joon.

Friday we had another appointment, for Joon to get her weekly Rituximab infusion. She gets that through her PICC line, and it takes a few hours. We had to stay another hour after that was done to make sure she didn't have any reaction. The appointment was at 8AM, so we had to get up really early to leave the house at 5:30, but the kids slept the whole way there. After the appointment, we went ate lunch, and then walked around the mall for a while. We'll have to go back this Friday at 8 AM again for her last infusion.




Penny is growing so fast now. She's rolling all over the place, and always pushing and kicking so much. She's still working on those two teeth, and so she drools and chews a lot. She babbles all the time, and she laughs with this ridiculously cute laugh, it's like she's yelling "HA! HA!"

She loves to stand. We have this exersaucer thing that was a gift for Joon when she was a baby. Joon would never put up with things like that, she needed to be held constantly, so we never even took it out of the box until now. Penny has been using it now, and she loves it! She can't reach the toys yet, but she likes to look at them.

Penny has been sleeping through the night since we've been home. She was doing pretty well while we were in the hospital, but now she's doing great! She went to bed at 8 last night, and slept until 7 this morning! I just hope it continues this way. She's also been napping well. She generally goes down easily when I swaddle her.

She is sucking her thumb now, which is so cute. She has learned to grab things, though she doesn't quite know how to let go yet. She swipes at toys, and she has discovered her toes. When I'm changing her diaper, she helps me out by grabbing her toes and lifting her butt up in the air.



I'm thinking of starting Elimination Communication with her. EC is when you follow a young baby's cues and get them to use the toilet. It worked really well with Joon, but I didn't think we'd be able to do it with Penny because our attention is split between the two kids. I'm going to get a cheap little potty chair, and try it out. It can't hurt to try. She seems ready for it. Actually, I probably should have started a long time ago, but you know, we've been busy.

I'm so glad she's such an easy baby. Joon was very high-need, and I don't know if I would have been able to survive this last month if Penny was as needy as Joon was at her age. I am so lucky to have a mellow baby while I REALLY needed her to be so. It's so great to be able to put her down in her crib and have her go to sleep! I was never able to do that with Joon. Even up until she was two, she had to be nursed to sleep in our bed, and then I'd try to slip away, and half the time she'd wake up and I'd have to start over again. She still occasionally has a fussy night, but overall she's so easy.

Penny is almost 3 months old now. She'll be turning 100 days old in just a couple of weeks, which means we'll be celebrating her Baek-il! The Baek-il is a Korean tradition, celebrating a baby's 100th day of life. In the past, the infant mortality rate was so high, it was a pretty big deal for a baby to survive the first few months. Penny's Baek-il is on the 22nd. We will be making Korean food, and a birthday cake.

Penelope talking.

Almost ready.

Joon is doing really great. She's walking almost normally now, she's pretty much back to how she was before, except she's still not talking. She had a few words, but she stopped saying those several days ago. Right now she's babbling like Penelope. We should be going home Monday. They were going to transfer her down to the rehab floor for a couple of weeks of intensive therapy, but now she doesn't need it anymore. All she needs is the speech therapy. They're going to do a blood cell count just to make sure she's good to go. They've been preparing us for discharge, setting up appointments and getting speech therapy set up for us. They're teaching us how to care for her PICC line, doing things like drawing up saline, flushing the line and changing the caps.

Penny is getting so big. She's sleeping pretty well now, we just have to swaddle her. She wants to stand all the time. Whenever her feet touch anything, she pushes off to stand. Her two teeth are still right below the surface of her gums. They've been there for more than a month, I don't know what's taking them so long. But Joon was teething for two months before her first teeth came in.

Joon is so sweet to Penny. She's always trying to give her toys and things. She likes to put her little animals on top of her, or try to get her to hold them. Today she put a bunch of cookie crumbs on her. She touches her so gently and carefully, and she's so bashful about it.

Getting better.

Joon walked today! She keeps trying to climb down out of the bed all the time. Sometimes she's not allowed to because she's hooked up to various things that we can't move. But whenever possible, we encourage her to get out of bed. Now, she's able to climb down and stay on her feet and easily cruise along the side of the bed while holding on. Then she voluntarily let go, and walked a few steps over to the chair, then kept walking back and forth between the furniture. She's still wobbly, but she does it! So exciting!

So right now, she's doing great in everything, except for talking and drinking. She just doesn't want to drink at all. Today, she actually took several sips of juice, I think it was about half of a juice box, so about two ounces. This is the first time she's drank anything in three weeks! But that was this morning, and she's been refusing again since then.

She's still not talking. She was saying a few things, but now the past couple of days she doesn't want to talk. She is finally getting pretty consistent with nodding or shaking her head for yes and no, and we're working on sign language. She used to sign a lot, but then she stopped signing after she started talking, so she doesn't remember any signs, and I don't remember much either.

Today the doctors said Joon may be able to move down to the rehab floor as early as tomorrow! They want her to be down there for intensive therapy for a while, probably about two weeks. They have outpatient PT, OT, and speech therapy, but only 3 times a week. She's going to need it three times a day, seven days a week, so she'll have to stay here for that.

Presents.

Joon received a package full of toys from an online friend and her bbgurls. She loves them, especially this yellow monster that makes noise when you throw it or hit it. It's great because she's throwing it around and actually crawling to go pick it up!





Thanks so much, Megan! <3

The last few days.

Tuesday had some goods and some bads.

Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.

Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.

Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.

Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.


Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.

The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.

Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.

My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.


We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.

We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.

Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."

She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.

Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.

Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!

Fast forward.

Today has left me feeling optimistic.

Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window.







We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet.





She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds.



It was awesome.

And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days.

Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink.

Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.

Worry.

Joon's condition has remained unchanged over the past few days. She has improved a lot in the past week and a half, but she's still nowhere near where she was before. I'd say she's on the level of a 9 month old right now. She can sit up unassisted for short periods of time, but she can't stand without support. She can now roll over and crawl a little bit. She's eating well again, but she still can't drink. The only thing she can say right now is "Yeah."

Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah."

A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it.

When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this.

I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely.

I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life.


I have a few videos of her that were recorded in May and June, and some from the past week.

This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon.



This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies.



The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk.





It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.

Diagnosis and prognosis.

Joon is not doing as good as she was two days ago. She's still good, though. She's just not talking as much as she was that day. She mostly just says "yeah" and that's pretty much it. It seems like she tries to say "no", but just gets the N sound. The doctors said it's normal for her progress to go up and down a bunch of times over the first couple of weeks.

She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options.

Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability.

The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment.

The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.

Two months

Yesterday was a great day for Joon. She made huge advances in her recovery. Unfortunately I'm still here at home until after Penelope's appointment tomorrow. But I did get to see her on webcam.

Andrew went back up there in the morning. He talked to the neurologist again, and looked at the MRI scans. The MRI showed swelling in her cerebellum, which is shat caused her to not be able to talk, eat, stand, or anything else. They decided to give her steroids for a few days to help with the swelling. While the doctor was there, Joon had another seizure. Her eyes were bouncing up and down, and her eyebrows twitching. Later in the day, she had another seizure that we noticed.

After lunch, Joon's recovery started progressing in fast forward. She started sitting up on her own, and playing with toys. Then she started TALKING. She's talking now!

Andrew and I set up our webcams and I got to see Joon playing. She looked at me and waved and talked. I showed her the cats, and she tried to say Sagwa.

Penelope turned two months old, and I took her comparison photo on the blanket I made for her.

Two months:



Penelope had her two month checkup today. She's in perfect condition. She weighs 11 pounds and 2 ounces, and she's 59 centimeters long. Her head circumference is 38.5 centimeters. She's met all the expected milestones.

We headed back up to Denver after Penelope's appointment. Penny slept the whole way there. Joon is still doing good, but not as good as she was yesterday. She wanted pizza for dinner, but when it arrived, she just wanted to eat french fries. She kept trying to climb down out of the bed, even though she can't really stand on her own yet. She had another EEG today, just for an hour, to see how her brain activity has improved in the last couple of days. She's sleeping now, and hopefully she'll sleep through the night like she did last night.

Update.

We haven't been getting much sleep. Last night, Joon had her EEG. She wasn't very happy about having the electrodes attached to her head. She kept trying to pull them off, and then cried when I told her not to. Then she got up at 4am. I changed her, then fed her, then Penny woke up and I changed her and fed her. Then Joon started freaking out about the electrodes again, and she woke Penny back up. After a while we gave up on going back to sleep and just went and grabbed a coffee instead.

They took more blood for more lab tests. Then they told us she couldn't eat or nurse until after her MRI, which was scheduled for 3:30 pm. The physical therapist and occupational therapist came in and worked with her for about half an hour. She was really not in the mood, probably partially because she was hungry. Then the speech therapist came in and worked with her. Joon did a lot better with her. They played with a toy, then the therapist brought out these two little voice recorders things. You can use them to record a word or phrase, and then Joon just has to hit a big button to get it to talk. She started working on teaching Joon to push the button, and left one of the recorders with us. I recorded "No." and told Joon that if we're doing something she doesn't want to do, she can push the button and we'll know to stop.

The neurology team came in and checked her out again, and then the infectious diseases team also came in and examined her and asked a bunch of questions. The head neurologist told us about the EEG results. He said Joon had one little seizure, but we hadn't even realized it had happened.

They took the EEG electrodes off, and her hair was all full of glue, and the oil they had used to unstick the electrodes. A couple of nurses helped me bathe her. They put some water in the tub, and then I sat her on the side and put her feet in the water. She was excited, and immediately stood up. She was voluntarily bearing weight on her legs, but she still couldn't balance, so I had to hold her up. She sat in the tub for a couple of minutes, but then she started freaking out. I had to pick her up, and they used a washcloth on her while I held her. Then I had to sit on her bed and hold her in my lap while they washed her hair with a basin of water under her head.

A little while later, they took us down to radiology. Andrew took Joon back into the MRI area and stayed with her while they sedated her. They did another MRI (her third), and then while she was sedated they did her second spinal tap. While we were waiting for her, my mom arrived. She hadn't been able to get up to Denver until today, because she was working. She had off today, so she came up. Joon woke up, and we went back to be with her. We stayed in the recovery room for about half an hour, then went back to our room.

We all hung out for a while, and ate spaghetti that my mom made for dinner. Then the metabolic team came up and talked to us. They said today's MRI looked normal, though the one done last week had a couple of spots. That's a good sign. They said they've done a bunch of tests for metabolic problems, and the ones they've gotten results on so far are all good. Some of the other tests will take longer, possibly as long as three months.

Andrew and I packed up some of our stuff, and then we came home, along with Penny. Andrew is going back early tomorrow morning, but Penny and I are staying here a little longer. I have an important appointment early in the morning, and then Penny has her two-month appointment the next day. So we're going to stay here until after her appointment. I miss Joon so bad already, and feel awful for being away from her. I've never been away from her for this long before. :(

Children's Hospital

The Children's Hospital is great. I'm so glad we got her here, I just wish we would have brought her here in the beginning. It's huge and feels so cheery and cozy and clean. They're incredibly accommodating, they give us everything we need, and are constantly offering to get things for us. There's a kitchen right across the hall, with a fridge full of free snacks and drinks, microwave, ice machine, etc. which we can use at any time. There's a lobby with a playroom with tons of activities for kids of all ages. We always see parents walking around the halls with their sick kids, the staff encourages us to get Joon up out of bed and do things with her. Each floor has a lactation room, which has a really nice pump, and they gave me a set of pump parts to use with the pump. And they have a daycare for siblings, which is free, so I would be able to pump some milk with Penny and take her to the daycare so I can have some time to work with Joon without distractions, and if Penny needs me, I'm just two minutes away.

The people here seem really knowledgeable. Everyone has been asking tons of questions and paying attention to what we say. They actually examine Joon, instead of just briefly looking over a few things. They observe her, and seem to communicate with each other about what's going on. Instead of just having one doctor on call, we always have an attending, a resident, an intern, and a medical student. We have an entire team of neurologists working on our case. It's awesome. We've told her entire case history to about a million people so far. They actually do rounds the way you see on shows like Scrubs. And when the nurses change shifts, the nurse that's leaving and the new nurse come into our room, and the old nurses briefs the new nurse on what's happening, while we're there, so we can make sure the new nurse knows everything.

When we arrived yesterday, a med student took her case history, and asked a bunch of questions. Then we met a lot of other doctors. They talked to us about what the plan was at that point, basically that they would all get together and go over her records and the info we gave them, discuss everything, and come up with a game plan. They took some blood for lab work, and said they'd most likely be doing another MRI and spinal tap.

This morning, after the doctors had a chance to discuss everything, they took some more blood to test for some more unusual things. Then we took Joon down to radiology, and she had a more in-depth MRI, to look at some things that weren't checked before. That came back normal. But they told us they looked at the MRI ordered by Evans hospital, and there were some spots on it. The bad doctor at Evans had said that that MRI was normal. We don't know yet what those spots mean, but they're doing more testing to find out.

At some point the entire neurology team came in. I was laying there nursing her, and suddenly five or six neurologists surrounded us and started testing all her reflexes, looking in her eyes, measuring her head, asking weird questions. They said they're going to be spending a lot of time thinking about her case, and test for lots of really rare things, and should be able to figure out what's wrong within a couple of days, and even if they don't they'd like to start treatment soon.

We were visited by a physical therapist and an occupational therapist. They worked with Joon, trying to get her to do different things to show them how all her parts were working. They tried to get her to eat and drink, but she wasn't in the mood. They used her Ariel doll, having Ariel do things they wanted Joon to do. They brought in a little wheelchair and got her into it, and when they left, they left the chair with us so we can walk her around. They said they'd be coming back on a regular basis to work with her.

While Joon was still in the chair, I got some Oreos, and offered her one. I held my hand out flat with the cookie laying on my palm, and she swiped at it and was able to grab it and get it to her mouth. This is the first that she was able to feed herself, before this we've had to put food into her mouth. When she bit the oreo, she wasn't able to keep holding onto the rest of it, she just let it fall. She ended up eating almost two oreos, and I filmed some of it and uploaded the video.

We went for a walk, and took Joon all around this floor. She looked out the big windows and checked out the trees and cars and whatnot. We went to the playroom, and the woman there picked out a few toys and tried to get Joon to play with them, but she wasn't interested.

When we came back to the room, the speech therapist came in. She brought a shape sorting toy, and she and Joon played with it together. Joon was definitely still able to match up the colors and shapes, but she had a lot of trouble getting the pieces to the holes. She was just banging the pieces against the top, not really getting near the right hole most of the time. The therapist asked a lot of questions and did a did a bunch of stuff with Joon, and she said she's going to be working with her every day. She said a lot of Joon's crying is due to her frustration with being completely unable to communicate. She used to talk non-stop, and would tell stories that went on for more than ten minutes. And now she can't say a single word. She said that because it's easier for Joon to control her gross movements than the finer movements required for speech, she's going to bring some machine that Joon can use to talk for her.

Joon is hooked up to a bunch of electrodes right now. They're doing an EEG test overnight, so she's sleeping with 27 electrodes attached to her head. It's pretty scary, I keep looking at the screen and she's having a ton of "spikes" (1-3 each minute) and a lot of "events" too. Someone on the internets said these are actually seizures with no outwards signs of seizure. But I'm going to stop listening to Dr. Google, and not worry about it until we talk to a real doctor about it in the morning. This is going to be a rough night, Joon just woke up and took off the gauze that was wrapped aroung her head, and keeps trying to pull the electrodes off.

Transferring

We will be heading to the Children's Hospital in Denver within a couple of hours. Yay!

Videos.

Joon is quickly recovering. She has good and bad periods. During the good times, she's laughing, smiling, and starting to move around. In the first video, she's laughing about putting her feet on her food tray.

Nurse Penny while Joon cries, nurse Joon while Penny cries, nurse Penny while Joon cries, nurse Joon while Penny cries, nurse Penny while Joon cries. Such is life.



I can't work out how to nurse them both together anymore. It was easy when Penny was smaller, but now she likes to kick Joon. I've tried having Joon lay across my lap and then have Penny in the football hold, but it didn't work. I even had my mom trying to hold Penny up to my breast in all sorts of positions, but we couldn't get any to work.

It would be easier if Joon wasn't so weak, but right now she is too sick to be able to sit beside me while nursing. Even having her in my lap is uncomfortable for her, so I almost always have to nurse her side-lying.

They usually don't need to nurse that often. They've just had bad timing recently, and both decide they need to at the same time. It mostly happens at night when they wake each other up and both need help getting to sleep. I'll get Penny to sleep, then while I'm trying to set her down, Joon's still crying and wakes Penny up again, and Penny starts crying again while I'm trying to settle Joon. They keep each other up and I have to keep going back and forth forever.

Something we find funny during all of this:

Joon has to wear Pampers so they can weigh her output, and we are all so confused by them. I thought disposables were supposed to be easier and more convenient than cloth.

First smiles.

After about an hour of nursing, she started smiling, and we even got a couple of laughs out of her!

quick update

Thanks so much to everyone who has helped. The support we've received has been amazing.

I will make a real update when I have a chance.

TLDR version:
We got a new doctor, he seems great so far. He's willing to transfer her, but now Memorial says they can't take her because they don't have their neurologist there on the weekends so they wouldn't be able to help her. They're supposed to take her on Monday. Meanwhile, we're okay with the new doctor.

Joon's condition seems to make a dramatic improvement each time I nurse her. She's becoming more aware, she even smiled today. And she started eating! She accepted a few bites of grilled cheese sandwich at lunch, and now she took 27 pieces of macaroni and cheese! It's so exciting!

SHE ATE!

SHE ATE! She was nursing, and Andrew asked if she wanted some grilled cheese. She unlatched and looked at him. I held the sandwich to her lips and she latched onto it and sucked pieces off. It looks like she's relearning how to chew.

There's been a lot happening but no time to write. I've been staying with her overnight, Penny too. I'm nursing them almost all of the time, so it's hard to do anything else.

Update.

Several people said we need to get her out of Evans (an army hospital) and get her in Memorial (a civilian hospital). Well, we went to Memorial to do her MRI, because she had to be sedated. As soon as we got there, the nurse there said thank god I was still nursing her, and told me about a mama that was nursing her 3 year old with cancer. Everyone at Memorial was pretty appalled at the way she was being treated at Evans, and they immediately tried to help us get her transferred.

Unfortunately, the doctor at Evans (Dr. Williams) doesn't want to transfer her for some reason. I don't understand at all, because she was trying to send her home yesterday morning, even though she couldn't eat or drink, stand or sit or talk. Williams wanted to send her home and have us force feed her popsicles until she snaps out of it. At that point, we didn't know we could take her to another hospital, so we thought the only options were bringing her home and have her starve to death, or get them to keep her in Evans. So we fought and had them keep her. That was yesterday morning, and then last night when we were trying to transfer her to memorial, Williams didn't want to let her go. I don't fucking understand at all.

The Memorial staff said they'd have to call up Dr. Williams and i'd have to request to stay at Memorial. So we did that, and Dr. Williams started yelling at me, telling me that we can't do that, that we have to come back to Evans because Joon is her patient, and we are only at Memorial for the MRI and had to come back to Evans immediately. Williams said she wasnt going to let us leave, and we'd have to sign out Against Medecal Advice, which would make Tricare not cover anything, and we'd have to pay for the entire hospital stay, cat scan, mri, ambulance, etc, and it would cost us upwards of $50,000, and then Memorial wouldn't take her. I started crying and handed the phone to my mom, and she went off on Williams, and told her we were going to transfer because she was incompetant and was just going to let Joon die.

After that, Memorial said they couldn't do anything for us while Joon was still Dr. Williams patient. They said all we could do is go back to Evans, and then complain to higher-ups in the morning, and if that doesn't work then just keep escalating it, and call our congressman and/or the media. So we had to go back to Evans, and my husband has some of his officers raising hell. But Joon is still at Evans, and Dr. Williams is still her doctor. I asked if we can just refuse to see Williams, and request another doctor at Evans, and they said we'd have to pay if we do that.

When we got back to Evans, we talked to one of the nurses that had seemed to be more concerned about Joon. She acted like she was on our side, and said she understood and she'd make sure she was in our room when Dr. Williams came to talk to us. Dr. wIlliams came up, and she brought some Sergeant with her, obviously to be a witness as she said all the right things and made us look like bad parents. She lied and said that she had never said to stop breastfeeding, she kept saying it was great that I was nursing and getting some nourishment into her. It was all complete lies! And she kept saying that she was trying to do what's best for Joon, she said that all signs point to viral ataxia, but she "wasn't going to take it at face value, and that's why I'm doing all these tests, to rule out everything else." But the thing is, she wasn't doing tests until we insisted. She just immediately assumed it was a virus, and stuck with that, and didn't do anything for three days, then tried to discharge her yesterday, and when we wre like "WTF NO!" then she started with the cat scan, MRI and spinal tap. But now she has this witness to all of her lies, and I'm scared it's going to make it imposssible to fight her, because it looks like she didn't do anything wrong.

I don't know what to do. I'm so scared they're going to kill her or cause permanent damamge. It feels like they're holding her hostage, and it's going to cost us $50,000+ to get her out of there. I was all ready tio just leave Against Medical Advice, and then deal with the money problems later, but then she said that Memorial won't take her if we do that. So then she'd be stuck without a hospital, and she'd just die at home. So I don't know what to do. I'm just terrified, there seems like there's nothing we can do.

Some of the things people here suggested were encephalitis, meningitis, and lead poisoning. There were a couple of other ideas, but I couldn't remember them whne I was talking to the doctor, so I'm going to write them down and ask when I can.

The cat scan, MRI, and spinal tap they did today are suppposed to show if she has encephalitis or meningitis.

I looked up the lead poisoning (just on wiki, because that's all I could do on my phone), and it sounded exactly like what she has, including several symptoms I didn't mention here before: loss of appetite, abdominal pain, vomiting, weight loss, constipation, anemia, irritability, lethargy. She has all of those. And yet the doctors didn't even consider lead poisoning. Why? Because I didn't mention living in an old house. So they didn't consider it, and waited for us to bring it up, and then tried to dismiss it, and we pretty much had to force them to test for it, and they only agreed because "Well, I guess it couldn't hurt." Yeah, it can't fucking hurt for you to DO YOUR JOB.

We asked about doing the protein drip in the IV, and she said couldn't do that because they'd have to use a larger diameter needle. I'm going to see if they can do that, but I'm scared to have them do it at Evans, because they are really shitty at placing IVs, they always take several sticks to get one in, and they've ruined all the veins in her arms and hands. When they sent us to Memorial for the MRI, memorial staff had to put the IV in her foot. Thankfully, that one is still in, so the people at Evans didn't have to stick her again. But I don't know how long that'll last, and I don't want her to still be there when she needs a new one.

I desperately want to get her out of Evans before they kill her, I just don't know how to do this. Deos anyone have any advice.

Nursing a sick baby.

My almost three year old daughter is in the hospital, we don't know what's wrong with her, but hopefully the MRI we're waiting on will give us some clue. A week ago,she was a normal three year old, now she can't talk, she can't walk, she can't stand or sit up or even hold her head up. She's like a newborn. She doesn't respond to us, she doesn't move, she just lays on the bed and cries.

She won't eat or drink anything, we keep offering her favorites and special treats. She doesn't even want ice cream or soda. Today is the sixth day of exclusive breastfeeding. She was on an IV for a couple of days, but they took it out yesterday.

The doctor was trying to criticize me for nursing her, but my milk is the only sustenance she's getting. Maybe they should figure out how to get some food in her, instead of dumping on me for keeping her alive.

I'm also nursing my newborn, and the doctor says I shouldn't be tandem nursing because they need different types of milk. I know that, but my body is producing newborn milk, and there's nothing wrong with giving my older daughter newborn milk, especially considering the alternative is nothing.

They said that if I stop nursing her,she'll decide to eat, but it doesn't work like that. I went home last night while my mom stayed with her, she didn't nurse for over 12 hours, and she still wouldn't eat or drink.

And nursing is the only thing that consoles her. When she's not nursing, she's crying. We try holding her, singing to her, offering all her favorite things, etc. Nothing has any effect, except nursing her.

I guess I'm just looking for people to comfort me and tell me I'm doing the right thing. And has anyone been through something like this? Does anyone have any idea what this might be?

Her IV is out now, and she's starting to be responsive. She isn't crying all the time anymore, and she even looks at the TV now.

She improved slightly. She is a little less fevery and can open her eyes, but she's still constantly screaming and writhing in pain, and not eating or drinking.

Joon's in the hospital.

Joon's in the hospital. They finally decided to admit her overnight. They should have fucking done that last night. They were going to just send her home with tylenol again tonight. It's just unbelievable that they could just ignore the fact that she's spent the last three days doing nothing but screaming and writhing in pain, and hasn't been eating or drinking for three days! I'm sorry, but tylenol is not going to fucking cut it. She's so weak she can't even hold her head up or hold her eyes open. She can't walk or even stand. She's been to the ER every day for the past three days, because they kept dismissing her and she kept getting worse! She is literally constantly crying and screaming. Even when she's asleep, she's still crying. And every few minutes her eyes fly open, her whole body tenses up, her limbs flail, and she SCREAMS as loud as she can. It seriously looks exactly like when I was in labour, during the transition stage, so I'm sure the pain she's having is as bad as that was for me. Earlier we thought she was having seizures, but we were told they're not because she's still screaming when it happens. It just looks like seizures, but with screaming. I don't know, but it's obviously something we can't handle at home, as evidenced by the fact that she keeps getting worse.

I had to come home, because Penelope couldn't stay there, and I have to be here with her. Andrew is staying with Joon, and we're going to go back in the morning.

There's a lot more to the story, that I need to write down, but right now I just really need to get some rest so I can go back and help out with Joon in the morning. I don't know if I'll even be able to sleep, with all this worrying, and being so angry at the idiot doctors who just don't give a fuck.

ER

Off to the ER again, Joon has a probable ear infection. Why do these things always show up when the appointment line is closed for the next three days?

Joon singing

Joon singing: "Twinkle, twinkle, little star, how I know my ABC's."

Six weeks!

Penelope is growing up so fast.

She's six weeks old now. She's awake and alert most of the day, and sleeps most of the night. Nights have gotten so much better. Well, most nights. She still has colicky time, and sometimes it's hell getting her to sleep, but then she usually sleeps for a long time.

She smiles all the time. Fathers Day was the first I noticed that she kept smiling socially over and over again. She always wants to be held upright so she can look at everything. She wants people to interact with her constantly. She absolutely hates being in the car seat, and scream constantly the entire time we're driving.

And she's teething! When she was just five weeks old, I had two people point out that she has two teeth visible just below the gums! I didn't believe it at first, but it looks and feels like teeth, they're just where teeth should be, and they look exactly like Joon's did right before they cut through. It's just so crazy.

Penelope was 10 pounds when she turned a month old, so I decided to try her Goodmama diapers on. They fit her well, so we've been using those now. I want to get a few more cheap used ones. Her first goodmama was the panda one, so I'm going to be keeping that one for her memory box, along with her first newborn diaper, which was a panda Muttaqin.

I crocheted an awesome hat for Penelope. It's a brain slug from Futurama. It's so cute, and I'm pretty dang proud of it.

I took Penny swimming in Joon's kiddy pool. She seemed to have a good time, and it was super cute.


I earned this ribbon for nursing Penny for six weeks!



It was so much easier to get this ribbon than it was the first time I got it. Besides some engorgement when my milk came in, and some issues with overactive letdown, we haven't had any issues. Nursing has been going smoothly, and I expect to continue for as long as Penny wants to.

Soon I'll be getting the three year ribbon for Joon!

Natural childbirth.

“The first intervention in natural childbirth is the one the woman does herself when she walks out the front door of her house. It is from thatfirst intervention that all the others follow.” - Dr. Michael Rosenthal

One month!

Penelope is one month old!

1) Baby Name and Age: Penelope, one month
2) Weight/length/clothing size being worn: She's wearing some newborn size clothes, some 0-3 month, and a few 3-6 month. She weighs 10 pounds even, and is 23 inches long.
3) Food! Formula? Breastmilk? Combo?: She's 100% breastfed, she's never had a bottle.
4) Sleep habits: She sleeps more during the day than at night. She has been having a fussy period each night, then sleeps relatively well most of the night.
5) Is baby on a schedule? If so describe: Not at all.
6) Whats driving you crazy, if anything: She has colic and reflux, and has been crying for hours each night.
7) Milestones of course: She holds her head up very well, and lifts up part of her upper body. She turns to look at people, and follows objects with her eyes. She smiles a lot. She likes pushing off to attempt to stand.
8) How are you doing in general: Pretty good. We're having a little trouble adjusting to having two kids, but it's not too bad.
9) Are your health and weightloss concerns going well?: It's going well. I'm totally healed. I didn't tear at all, and I think I was healed within the first week. I gained 57 pounds, and have lost about 26 so far.
11) Pictures:

One month:

The Birth of Penelope Enola

This is the birth story of Penelope Enola.

On the night of the 13th-14th, I kept waking up with painful contractions that made my back hurt. I didn't bother keeping track of them, but they seemed to be pretty far apart. I just put my heating pad against my back and tried to sleep, but I didn't end up getting much sleep that night.

That day (the 14th), I continued to have contractions, but they were averaging maybe 1.5-2 hours apart. I started to think that maybe I'd be having the baby the next day, and I got a little excited because the next day would be the baby's due date, and it would be neat for it to be born that day.

I spent a lot of the day sitting in the baby's room, rocking in the glider chair and doing visualizations to welcome the baby and encourage labour. I went out into the back yard with my two year old daughter, Joon, and we dug a hole. We don't have a proper shovel, so I had to do it all using just a little garden trowel. The hole was for the maple tree I bought to plant over the baby's placenta. I figured I should get the hole-digging out of the way before the birth, so I wouldn't have to worry about it after the baby was born. I was hoping to actually plant the tree on the birth day, and that wouldn't happen if the hole wasn't pre-dug.

At around 6 PM, I had a contraction, then went to the bathroom, and saw that I had started passing a little bit of blood-tinged mucous, but not enough to be the mucous plug.

After my husband got home from work, we decided to go to Walmart to pick up a few things. I wanted to get a pack of disposable wipes to use for the meconium diapers, and I realized that I could only find one pair of diaper pins, so I wanted to pick up a couple more packs. And we wanted to stock up on groceries too. We walked around Walmart for a couple of hours, and the contractions were 30 minutes apart. They were painful enough that I had to stop and close my eyes and sway through them, and I couldn't talk. On the way home, the last couple of contractions were only 20 minutes apart.

I sent a few text messages to my friend, Shannon, letting her know that I was in labour. She's interested in unassisted birth, and very supportive, and she's always had helpful things to say. For a while, I had been thinking it would be helpful to talk to her if I get panicky during labour, so a few weeks ago, I finally asked her if it'd be okay if I called her for support if I need it, and she said she'd love that. So I told her that I was in labour, and confirmed that it'd be okay for me to call her in the middle of the night.

When we got home, Andrew put the groceries away, while I got Joon ready for bed. I got her changed into her pajamas, and nursed her down on the couch. I had another contraction while I was nursing her, and it was pretty bad. As I got her ready for bed, I told her the baby might be here tomorrow. She said "No! You're not having contractions!" I told her I was, a little bit. She said "But you're not crying." We had been discussing pregnancy and birth, and watching birth videos, so she'd know what to expect if she was awake when I gave birth. We talked about it for a minute, and then I put her to bed.

We decided to get the birth pool set up before we went to bed, so Andrew went and grabbed the bin full of birth supplies, and brought it down to the kitchen. He unpacked the birth pool, and started inflating it with the electric pump. Meanwhile, my mom came home, and we told her what was going on. We moved the kitchen table and chairs, and we set down a drop cloth, and put a blanket on top of it. When the pool was inflated, we set it on top of the blanket.

I cleaned up the house a bit, just in case my friend Shannon would be coming over. I went through the birth supplies, and pulled out all the labour support things, and arranged them on the tables so they'd be ready when I needed them.

At around 10:20, I went to the bathroom again, and passed my mucous plug. Contractions were still about 30 minutes apart at that point. We went to bed, hoping, but not expecting, to get some sleep. I brought my laptop up to the bedroom and set it up on the nightstand.

As soon as I laid down, the contractions started getting closer together, and steadily increasing in intensity. There was no way I was going to sleep, but I wanted to let Andrew sleep for as long as possible. I was labouring on my left side for as long as it was bearable. Pretty soon, I had to moan through the contractions. Sometimes my moaning would wake Andrew up, and he'd help me through the contraction, touching me and encouraging me. At one point I tried laying on my right side, and immediately had really bad back pain, and a particularly painful contraction. I thought I really shouldn't be on my right side.

I had a contraction that was so bad it made me get up onto my hands and knees, and then my water broke immediately after. That was at 1:21 AM. I had a couple of prefolds on the nightstand, and I grabbed them and held them on the outside of my underwear, then ran to the bathroom. I sat on the toilet and pushed a little to see if any more fluid would gush. It didn't, and all of the fluid from the first gush had been absorbed by the regular pad that I had been wearing, so I replaced that pad with the prefolds.

I went downstairs and grabbed the birth ball, and set it in front of the nightstand where I had my laptop set up. I noticed I was shivering between contractions, and it wasn't from being cold. I updated my journal, and then sat there on the birth ball, just reading my friends page, and some birth forums and random things.

I sat on the birth ball and rocked my hips while I wasn't having contractions. At first, I was able to continue rocking on the ball during the contractions, but before long, that no longer worked for me. With each contraction, I had to quickly kick the ball out from under me, and then get on my hand and knees, or squat while holding onto the side of the bed. I found it helpful to have my hands on the bottom of the bed frame, so the wood pressed onto the acupressure points between the thumb and index finger. At this point, I was moaning very loudly. I made a point to tell myself to relax during contractions. I noticed that my abdominal muscles would automatically tense up, and that made it more painful. When I relaxed my abdominal muscles, it helped ease some of the pain. I also found it helped to rub the under side of my belly.

I continued like that for a little more than an hour. I timed some of the contractions, and they were consistently 7 minutes apart, and 90 seconds long. I kept wondering whether I should wake Andrew and start working on filling the pool. I didn't want to get in too early and have it slow my labour, or have the water get cold before I really needed it. I decided I would just wait and see, and my body would tell me when the time was right.

At 3AM, I knew it was time. I woke Andrew and told him we needed to start getting the pool ready. We went downstairs to the kitchen, and he got the hose and adapter hooked up to the sink, and started filling the pool.

I worked on setting up the rest of the supplies. I got out the crock pot, filled it with hot water, and put in some washcloths to use for warm compresses. I had a bag full of different candles meant to enhance specific chakras; red for power and courage, indigo for will power, orange for reproductive system, white for intuition. I lit some of the candles, and then set up the oil burner with some rose and bergamot essential oils. I laid out the other comfort measures on the kitchen table; rolling pin and dryer balls to use to massage my back, the book Mind Over Labor which has calming visualizations, Smooth Transitions tincture, a few other things.

I opened my notebook to a list of comfort measures for Andrew and my mom to suggest, a guide for how to recognize when I'm in transition, a list of helpful things to say during transition, and what to do in case the baby needs help after the birth. I set out the bowl full of supplies for after the birth (cord clamps, scissors, hanging scale, measuring tapes, etc.).

While I was setting things up, I continued to have contractions, and I had to lean over a chair and rub downward on my belly. I walked through the kitchen, moaning and rocking and working through each contraction, waiting for the pool to fill up. I was using acupressure, starting with the point between the thumb and index finger, and then I found it more helpful to use my thumb to press the point in the roof of the mouth. Finally I just couldn't take being on land anymore, and I stripped off my pajamas and climbed into the pool.

The water helped the pain a lot, but the contractions continued to get more and more intense. I continued using the acupressure with each contraction, sometimes using more than one point at the same time. After a while, I got the most relief from squeezing my earlobes, so I used that one the most. I leaned over the side of the pool, making sure to let my mouth hang open and moan lowly. Sometimes, while pressing the roof of my mouth with my thumb, it was difficult to keep my mouth open, and I ended up sucking my thumb while moaning quietly.

Andrew had a kitchen chair set up beside the pool, and he sat there and touched me and said the most helpful things. He offered me water after each contraction, and he brought me whatever I asked for. He asked if I wanted music, and I said yes, so he got my laptop and opened up my birth playlist. He asked if he should start filming, and I said yes, so he set up the camcorder in the living room. He said it looked really bad because the lights were so low, and was that okay? At that point I was thinking, "Pssh, I don't care how it looks, just turn it on and get back over here!" but I have no idea what I actually said.

Andrew turned off the water, and took the hose out of the tub. I was leaning back against the side of the pool. John Cale's version of Hallelujah was playing, and I started singing along. I was taking deep breaths at the beginning and end of each contraction.

The contractions got worse, and I kept changing positions, trying to get comfortable. My moans and other noises got much louder, and I had to try really hard to keep them low-pitched. This quickly became impossible, and I'd start each contraction with going "ohhhhhhhhh" which then changed to a "ahhahhahh!"

At around 4:40 AM, I started losing control. The contractions were two minutes long, with only 30 seconds between them. A bad contraction had me flailing my arms and hitting the side of the pool. I thought I was going to throw up, I told Andrew, and he brought me the bucket. I held onto it and didn't actually throw up, so I just kept holding it until Andrew took it.

I started really wanting my mom, but she was in bed. I wanted to ask Andrew to go wake her up, but I didn't want him to leave me, even for a few seconds. So I just wished she was there. Within a few minutes, she woke up and came upstairs. I was in the middle of a contraction, so all I could do was look at her, then close my eyes again and finish working through the contraction.

With the next contraction, I was crying "mama", saying "oh god", hitting the side of the pool, while trying to continue to use the acupressure points. My mom and Andrew were both helping me.

The music started skipping, and it was awful, but I tried to ignore it. I felt too hot, so I asked for cold for my forehead. Andrew went to the sink to get a cold compress, and then my computer just went completely insane and the music turned into the most horrible noise. I was still in the middle of a contraction, and this noise was unbearable. I said "make it stop" my mom asked "make what stop?" I said "the music." Andrew gave me the cold rag, and then went to try to stop the noise. The computer had the blue screen of death, and I think he had to unplug it and take the battery out to get it to stop.

It was 4:47 AM. I was in transition now. I couldn't figure out what I wanted to do, so I kept moving around, trying to make it less painful. I flung my arms around, grabbing at the pool liner, until Andrew and my mom both took my hands, and I squeezed them. I was screaming. I said things like "I can't do it," "oh my god, it hurts so bad," "This sucks" "Oh god, what do I do?" "Ohh no" "Fuck!"

At 4:53, my mom asked if I wanted the Smooth Transitions tincture. I was busy with a contraction, so I shushed her. A few seconds later, she asked again, and I said "Just wait."

And then I was pushing. I didn't even realize it at first. All I knew was that I was having a tough contraction that I didn't know if I could handle, and then there was a tiny catch in my breathing, and it felt better. They were just tiny preliminary pushes, less than a second long.

That contraction ended, and I asked my mom for the tincture. I had no idea that transition was already over, I honestly thought that it was just getting started, and that it would last for a while. My mom went to get the tincture, and found that it was still sealed. She told me that it would take a second for her to open the wrapper. I was starting another contraction, and I just could not deal with having to wait a few seconds. I cried "Oh god, why isn't it open yet?" Andrew told me "It's okay," and I said "Oh my god, no, it's not okay. You don't know what this is like. Oh, it hurts so bad."

My body gave two more little pushes, two seconds each. Then my mom had the tincture open, and I opened my mouth, and she gave me a dropperful. I held it in my mouth, and then swallowed. I felt calmer, and quietly finished the contraction, and was quiet while waiting for the next contraction.

As the next contraction started, my body automatically started doing little pushes. Pushing made it a lot easier, but then I stopped pushing, and it got scary again. I kept repeating "I don't wanna." I said "I can't," my mom told me "Yes, you can." I said "I don't know what to do, mama." She said "have a baby, that's all you can do." I said "What do I do?" Mom kept saying "Relax," then she said, "Let nature take its course."

Somehow, during all of my screaming and complaining, I never wanted to go to the hospital. I wanted it to be over, I wanted to not be in labour. When it got really bad I even wished I never got pregnant. But I never once wanted to transfer, I never even considered drugs to be an option.

At this point, it still hadn't hit me that I was already through transition and well into the pushing stage. But then I realized that I was in between contractions, and I was still in pain. I thought maybe the baby was starting to crown. I reached down, and touched my vulva, and couldn't feel the head.

And then another contraction started, and I really started pushing. I pushed for six seconds, then reached down and felt the baby crowning! I shrieked "ohhh, baby! Ohhh, it's there! It's right there!"

I pushed for another two seconds, and the baby's head was out! I said "Don't touch, don't touch, don't touch." Then I just breathed quietly for the next fourty seconds while waiting for another contraction.

The next contraction started, and Andrew asked if I wanted him to get the camera. I yelled "Camera!" and he scrambled to the living room to grab the camcorder and bring it closer. I said "I can't!" then told myself "Yes, I can!" I pushed for four seconds, paused and took a breath. I pushed for another four seconds, and the baby flew out and shot across the pool!

I grabbed the baby out of the water, and pulled it to my chest. I said ""Ohh, my baby! Ohh, that's my baby!" It was quiet for few seconds, then let out a tiny mewling sound. Andrew and my mom were beside me, touching me and the baby, while I held it and just looked in wonder at the amazing new life I had just brought into the world. My mom checked the clock and announced the time: 5:01 AM.

We sat there and took in the new baby. The baby's skin was covered in vernix. It was so thick, it looked like vanilla frosting on a cake. The crown of the head was slimy. There was a little bit of brown hair, not much, but more than Joon had when she was born. No eyebrows, just like Joon. The facial features were very similar to Joon's, but somehow different. The cheeks were fatter. It was beautiful.

I held my baby to my chest, and looked at all the tiny little fingers and toes. I wiped some of the vernix away from it's face. After a few minutes, I thought to check the baby's sex. A girl! We had another girl!

I started having more contractions. The first ones were pretty painful, they made me moan a little bit. Andrew asked how long it should take for the placenta to come out, and I told him usually about half an hour. Andrew got my camera and took a few pictures, but they didn't come out very well, because we had the lights low, and we left the flash off. Andrew brought me some coconut juice.

The baby started rooting around, and so I offered her my breast. She rooted for a minute, licked at the nipple, then latched on perfectly. She was fifteen minutes old when she had her first feed.

I had a pretty painful contraction, and felt like pushing, so I pushed, and thought the placenta was coming out, but it was just a huge blood clot. The afterpains were hurting my back, and I felt like I needed to change position. I handed the baby to my mom, and then rolled onto my right side, then my mom gave the baby back to me.

I birthed the placenta, then handed it to my mom, who put it into the bowl. By that time, the cord was white and limp. We tried to figure out who was going to cut the cord, and who was going to hold what. I handed the baby to Andrew, and my mom held the placenta bowl. I wanted to get out of the pool to do the cord cutting. Finally, my mom put the bowl down on the chair, and Andrew crouched beside it with the baby. My mom got me a towel, and helped me out of the pool. I picked up the bowl, and put the towel down on the chair. My mom held the bowl, and I grabbed the clamps and scissors. I clamped the cord and cut it,

She was getting cold from being out of the water, so we wrapped a towel around her, and I held her again. I got the hat and booties I crocheted for her, and I tried to put the hat on her, but her head was a little too big for it to go on the whole way. My mom brought me a blanket, and I took the towel off of the baby, held her to my chest, and wrapped the blanket around both of us.

After a little while, I wanted to go into the living room. I had my mom bring me a prefold to wear as a pad. She opened up a pair of mesh underwear for me, and helped me put them on. As I stood up, I had a big gush of blood that sprayed onto the kitchen floor. I put the prefold in my underwear, wiped the blood off my legs, and walked into the living room.

I sat in the living room for a short time, then I remembered the placenta. No one else had a strong enough stomach to cut up the placenta, so I went in the kitchen to do it myself. I examined the placenta and membranes to make sure everything was intact, then started cutting off chunks about the size of the end of my pinky finger. I placed one piece in my mouth and just let it sit there, and put the rest of the pieces in ice cube trays so I could freeze them without having them stick together.

As I was finishing up with the placenta, I heard Joon knocking on her bedroom door. She opened her door, then started coming down the stairs. Andrew went to the bottom of the stairs, holding the baby in his arms. When Joon saw the baby, she said "Ah, it came out! Now we can go swimming!" Andrew asked Joon if she wanted to meet her little sister, and she did. My mom picked up Joon, and she looked at the baby. She was very excited, but nervous, and scared to touch her.

Andrew asked if I was hungry, and then he made breakfast for all of us. We had bacon, eggs, and cinnamon raisin bread, and it was fantastic! I got so hungry while waiting, Andrew brought me a piece of bacon while the rest was cooking, and I ate it on the couch while nursing the baby.

After breakfast, Andrew was holding the baby, wrapped in a blanket, still without a diaper. She passed meconium, and it got all over her legs and feet. It took several wipes to get her clean, and she was very upset about it.

We decided to go ahead and weigh her, and I got the hanging scale and sling. She was 8 pounds 6 ounces! Two ounces heavier than Joon.

When I went to the bathroom, I was surprised that I didn't have any pain at all. I looked at my vulva with a mirror. It looked completely normal. I didn't tear, and there wasn't even any swelling. I didn't even need to use the peri bottle, or the comfrey compresses I had prepared.

I was sitting on the couch, nursing Penelope, and Joon asked for some milk. I asked if she wanted to share with her sister, and she climbed up and sat next to me, and I tandem nursed them for the first time.

At some point, my mom took Joon out shopping. They went to Goodwill, and my mom bought Joon a toy horse, and Joon picked out a plush tiger as a present for the baby. While they were gone, Andrew and I just hung out with the baby, and talked about names. We both loved the name Enola, but felt that it wasn't going to work well for a first name. Enola immediately became her middle name, and then we just had to figure out a good first name. We had a handful of names that we had both liked, but none of them really seemed to fit. Then we considered Penelope, and it suited her perfectly.

So it was decided, she was Penelope Enola.

Joon and my mom made Penelope's Birth Day cake. We had decided to go with a boxed mix, because we knew things would be too busy to bake from scratch. Joon helped my mom bake the cake, and then they frosted it, and we had Penny's Birth Day party. Joon had picked out a few presents for her, and helped wrap them a couple of weeks ago. We sat on the couch, and as I nursed Penny, Joon opened her presents and piled them all on my lap beside her. She also gave her a birthday card that she had picked out. It showed zoo animals riding a ferris wheel, and it said "It's your birthday. Hope it's a wild ride!"

Then we went to the kitchen, and Joon sang the Happy Birthday song, first the regular way, and then the version that says "you live in a zoo, you look like a monkey, and you smell like one too." Joon picked out three candles, and she blew them out for Penny. She kept talking about Penelope's umbilical cord, and then she told me that my vulva is bleeding. I just about died, because we were recording this to share with family. It was so funny.

We spent the rest of the day just hanging out and bonding. Then, when I was tired, I went to my own bed, with my husband and my new tiny baby.


Five minutes after birth:



Meeting for the first time:





Tandem nursing my girls:



Penelope's birthday party. Penelope was nursing. Joon opened all her presents and piled them beside her.