Saturday, October 31, 2009

Happy Halloween!!

Mom: Don't drop your lollipops on the floor!  They'll get dirty.
Strong Bear:  It's OK, Mom, Angel will eat them.

This is Seraph's first Halloween at home.  She has a cute Hershey's Kisses costume (somewhere) to match Angel's costume.  Maybe it'll turn up....heh

Tuesday, October 27, 2009

Seraph is Home!!

Seraph came home last night.  Angel kept giving her kisses.  It was soooo cute!  Rabbit couldn't stop squealing.  Bear patted the twin's heads and told them they're sooo cute.  Finch showed the girls toys.

Every time I look at Seraph, she's smiling.  It's nice to have her home :)

Monday, October 26, 2009

What Are You Doing?

Strong Bear: Mom, what are you doing?
Mom: I'm plucking my eye brows.
SB: Oh. Does it hurt?
Mom: Yep.
SB: Do you want to stop, Mom?
Mom: It doesn't hurt very much.
SB: Whew!!!

Sunday, October 25, 2009

One more day...

Seraph's doctor has OneMoreDay-itis. She's been telling me 'one more day' all week.

Seraph looks great. They need to adjust a few more calories in and diuretics out before she can come home. They need to double check her meds with her cardiologist on Monday. I'm telling myself that she'll come home Tuesday while secretly hoping that she'll be coming home Monday.

Sunday, October 18, 2009

Ain't No Sunshine

Seraph has a cold. No, she didn't catch it at the hospital. Her hayfever can turn into a cold when the snot isn't suctioned out regularly. When she was dehydrated, she didn't have any snot. When the snot started up again, it all ran down her throat before we noticed it was back. Boom cold.

She's having some minor rehydration issues - sodium levels and feedings.... They're not sending her home as soon as we'd hoped. She'll be in the hospital atleast 3 more days.

Time crawls when she's gone. She's bloated and feels yucky. When she sees me, she bursts into tears - telling mommy all about it. They draw blood every few hours. She is unhappy. No happy feet. No smile. No blowing kisses. Her best moments are chewing on various cords that are too attached to hide from her.

Heart beat - strong. Oxygen levels - low side of normal on room air. Temp - normal. Respiratory rate - normal for her. She's OK. She's OK.

I want to give her comfort. I hold her. I rock her. I show her videos on my phone's tiny screen. "It's Jake's Birthday Party!! Everyone say Hi....." She watches ...but from a fog. Remember your family. She remembers. Your family loves you. She knows.

She still likes songs and resting in mommy's arms. She rests her head on my shoulder - collapsing into me in depression or exhaustion or both. She likes examining her hand. She sucks on her thumb. (wow - that's new!)

The nurses give her Tylenol because she's agitated. Mommy tells them to cut off the tape holding her IV. It is too tight now that she is bloated. She doesn't need the Tylenol now.

I want to hold her forever, but need to go. She's asleep. I gently put her back in her crib. She wakes...knows I'm leaving...screams. I'll be back, sweetie. I'll come see you again. Mommy loves you.

Home. It's late. The kids are in bed. It's quiet. Really quiet. No hum from the oxygen compressor. No slurping on toys. No blowing kisses. No grunting to reach a cool toy. No rattle, no giggle, no coo. No happy feet thumping the floor. No cry for help.

Empty med syringes from 2 days ago (the last time I gave her meds) lie in her crib. I should wash them out. I don't. Cords from her feeding pump drag on the floor. Useless. Her crib looks wrong. Too empty, too cold. I feel anger. Odd. Shouldn't I be sad?

I become busy. Email. Bills. Straightening clutter.

Midnight. I stop myself half-way to the sink. Oh. I'd been on my way to draw up her 12 o'clock meds. I'll call her. 15 rings later, the nurse answers. "I forgot to tell you...." The nurse pretends no detail is too small to be important. I ramble. She needs classical music to sleep. No purple blankets. Ear thermometers instead of underarm ones. Saline drops in her nose. Mint balm on her lips. Pat her tummy. Don't touch her head...

I run out of questions. I have no more advice. Seraph is asleep. I thank the nurse. She says, "I'll be up all night. If you remember something else or can't sleep or just want to check, please call me again." Always please - like I'd be doing her a favor.

Sometimes I call again.

I miss Seraph. Our hearts are connected.

Graduated from the PICU

Wow...the hospital is being extra cautious right now. They're treating each patient as wildly contagious until tests prove otherwise.

Anyway, Seraph moved out of ICU today. She's fluid positive now...but they don't want to start her diuretics yet just to be sure she doesn't flip back to dehydrated. Yes, it's a fine line....they do a pretty good job. :)

Friday, October 16, 2009

Seraph's trip to the ER


Yesterday we switched Seraph to toddler formula (with real milk) for 2 feedings. Her nutritionist wanted to see if her tummy could handle milk. The answer is NO WAY!!

She had really bad diarrhea for hours afterwards. She spiked a fever (101) that went down with Tylenol. Around midnight she calmed down and slept.

Somehow her g-tube broke during all of, while we were sleeping, her g-tube was leaking. So, she basically missed all her night feeds, too.

We took her to the ER for dehydration. She was sooo purple. Dehydration really affects her heart and the way it pumps so everyone in the ER was really freaked out and ordering tests like crazy to see how bad it was. Some of her tests suggest that she might be sick and that her heart might be doing funky things. (that test came back already--her heart is NOT doing funky was something else that they've fixed.)...

So, she's in the PICU tonight. Rehydrating. Having tons of blood drawn. They'll know for sure in a couple days if she's OK to come home. She should be rehydrated enough by tomorrow night that they can address her g-tube issues and switch her back to normal (non-milk) feeds.

They did NOT have to intubate her....When we got to the ER they had to put her on 10 L of oxygen...but by the time we left the ER her stats were normal on room air.

I miss her like crazy and wanted to bring her home with me. I love/hate the hospital right now. Mostly I'm worried that she'll pick up some bug/flu while at the hospital.

Milky Ways..

Seraph seems to be allergic to milk. We let her try Angel's food. It didn't go well. I'm gonna stay up with her a while tonight to make sure she's sleeping well.

They want to switch her to a toddler formula. I think we'll go with the soy based.

Wednesday, October 14, 2009

Anger Management Parenting....

I found this cool link today:

On a somewhat related note....
I fell asleep on the couch this afternoon and woke to find Strong Bear spraying water from the kitchen faucet onto the floor at full force. When asked why he was doing it, he replied, "We wanted to splash." (I love you, Bear.)

I was angry. After the mess was cleaned up, I went outside. I called my brother who helped me calm down. I later learned that calling another adult to vent is a recognized stress management technique. Yay. I just knew I'd feel better after talking to him. Thanks, Juice.

What do you do for anger management?

Tuesday, October 13, 2009


Strong Bear: Mom, I said that Finch was cool because she wanted to be cool. Is that OK?
Strong Bear was playing Word Girl. He was being like the birthday girl who says "mine mine mine!!" and grows bigger every time she is mean. He was standing tall on a chair and we kept trying to trick him into doing something nice so he'd grow smaller again. He wouldn't do any of the nice things. Finally we asked him what nice thing he wanted to do. "I'll be reverent." Then he frowned, looked down, folded his arms and sat down.
Strong Bear [to Beautiful Rabbit]: It's OK because we're supposed to be friends and I like you.
When Bear and Rabbit started fighting at dinner, Bear stopped fighting and asked Rabbit to say something silly. When she didn't, he told her what funny thing to say to make him laugh: "hello, corn. I love you, corn. Bye bye!!
Strong Bear: I can't do it!
Mom: yes you can, go like this...
Stong Bear: Oh yeah! hehehehehe

Monday, October 12, 2009

Tis the season...

I've been feeling yucky. I think I need to trade in my body for a new one. Ya know when you replace your cell phone's battery because it won't hold a charge. Yeah, I'm like that. Maybe I'm solar powered. It's been awfully cloudy lately.....

Sunday, October 11, 2009

An Older Strong Bear

This is what Strong Bear will look like when he's old enough to grow a gray mustache! Every day he says something that cracks me up. He loves being silly. I wish I carried around a recorder so I could catch all his silliness. I tried to video his happy dance....but it's not quite the same when he knows I'm recording it. I'll try again in a few days :)

Saturday, October 10, 2009

Road Trip!, not across the country or even across town. We just went to the doctor's office :) Angel and Seraph are both in front-facing seats now. Seraph LOVES it. Angel was beat up from her immunizations. They've both been doing well - no fevers.

Friday, October 9, 2009

New Neighbors?

They built the roof on our neighbor's house today. When they were building our house, we used to drive by once a week to see the progress. Early on, we met our future neighbors across the street. I started looking forward to seeing them as much as I looked forward to seeing the progress on our house.

Every time a car slows down near the construction, I wonder if it's our new neighbors. No one has stopped yet, though.

Delightful Finch and Strong Bear love to sit in their window and watch the guys and their big trucks. I'm always getting after them to keep the window closed and not stand on the window sill. Bear protects Finch by yelling at her to stay down when I'm not there.

Yesterday Strong Bear saw a cool car with smoke decals painted on the sides near the front tires. He said, "Mom! Mom!! That car is so cool to me. I like that stinky car."

Thursday, October 8, 2009


Seraph heard this video and started blowing kisses again. It's her favorite sound to make. She's started tucking a knee under her tummy and pushing herself forward when she wants to go somewhere. She's crazy mobile when she's not attached to her feeding tube.

The twins had their 15 month check up today. Yes, shots. Poor things. Everything else went smoothly. Doc OK'd Seraph's switch to toddler formula and Angel's switch to whole milk. Seraph has been losing weight (cuz she's so active now). So, we switched back to a high calorie diet.

I think Angel wants to be a baby kangaroo (so she can get carried around all the time!) but I think the twins will be Hershey's kisses this year for Halloween.

Tuesday, October 6, 2009

Nap Time!!

Angel fell asleep at lunch. She was balancing perfectly for about 5 minutes. Then she started tipping. ( seems like there's a story about Grandpa I could insert here..) We rescued Angel and tucked her in on the couch. Grandma thought that was a great idea. So, she snuck in a nap, too. The couch is soooo comfy for naps!

Seraph had a great day despite her owie (a split lip that keeps re-splitting...poor girlie). She sat up by herself during about half of her speech therapy session today. I hope she does it again for her physical therapist in a few days. Afterwords, she was sleepy sleepy and took a good nap.

Monday, October 5, 2009

Brrrrr.....break out the sweaters!

The kids worked hard on our Autumn wall. I love the way the colors turned out. Beautiful Rabbit caught Dad at the door and made him close his eyes. I caught his expression when he opened them and saw the Autumn wall. I'm glad he likes it cuz it's right next to his computer - hehe :)

Angel fell asleep under the table before we finished taping it up. I love this 'play til you drop' age :)

Friday, October 2, 2009

Today didn't turn out like I'd planned....

Plan: flu shots for the kids
...I guess lots of other people had that same plan yesterday - they were out of shots today - doh!

Today was nice, though. Sometimes when I walk in the room, Seraph surprises me. She makes sounds I didn't expect to hear from her voice...or she looks extra tall in her toy saucer. She blows me kisses or beams one of her huge smiles at me. Somewhere along the way she switched from not wanting anyone to touch her to needing her mom to hold her.

Today she had her first trip in a front-facing car seat. She sat wide-eyed with her head leaning so far to the left I worried about her neck muscles. Then I realized she was just looking out the front window.

She melts my heart.

Thursday, October 1, 2009

Call Me Sneezy

I'm hoping it's just allergies. Strong Bear, Angel, and I have runny noses. The kids are all getting their flu shots tomorrow (Sexy & I got it last week).

Last year Beautiful Rabbit had a huge fit because the nurse didn't wait for her to be ready. Yesterday she let me in on a little secret - it didn't really hurt. I'd been dreading her flu shot all year! She hates shots but loves protecting Seraph. The other kids are too young to know they can complain about it.

Beautiful Rabbit is out of school for fall recess. I'm sad 'cuz it won't be much fun with me walking around sneezing and wanting to stay inside. So far she hasn't noticed - spent the day reading 2 books she loves. Tonight she went roller skating with friends. Phew!

Seraph's ST wants us to start reading board books to Seraph. She's eating really well lately. She leans towards the food and opens her mouth when it gets close. She still likes to be in control of the spoon after it's in her mouth, but she lets me put it all the way in most of the time now.

Angel is teething - 4 molars at once.

We're dry walling the basement this weekend. It'll be nice for the twins to have their own room. Yay :)


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