Back to Work

Seraph's on a tight schedule between speech and physical therapy. She loves oatmeal, hates squash. PT put her through the ringer today - tummy time and rolling over and over and over. Two hours later, she's still asleep!

Seraph's biggest news is that her eye-teeth have started coming in! I can only tell because her gums are so swollen they're even with her other teeth.

Looking ahead -

The cardiologists are going to look inside Seraph's heart on August 28th. In the cath lab, they'll check pressures and run various tests inside her heart. They're looking to see why she's doing so well...and hopefully OK her for the Fontan heart surgery (which she'll need in a few years).

First Day of School

That's right - time for school! We missed Beautiful Rabbit something fierce, but had a great time walking her to school :)

Gone Fishing

Haqon took the kidlings fishing at the lake and came back with a fish! All the kids ate extra potatoes at dinner so they wouldn't have to try the fish. One by one they gave in and tried it (except Finch - no no no no nooooooooooo"). Everyone else, "Hey, I like it!!" Yay for Daddy.

Angel

Still wary of strangers

Still happier on her brother's trike than her own

Still plays til she drops

Still my sweet lil baby....

an Angel who naps :)

When Seraph's therapists come over, the kids instinctively know to play quietly scream, cry & fight.

Luckily a bucket of water is all it takes to distract them for an hour!

Baby Oatmeal!!

Seraph had her first taste of oatmeal today. (OK, technically I snuck her a taste months ago...but her first official taste...)

She LOVES food. Her therapist thinks her muscles will get strong fast. She might be able to take a (thickened) bottle in a few weeks!! Her oral aversions vanish when the oatmeal gets close to her mouth. She had some trouble at the end, but was fine once we vented her g-tube. Next time we'll feed her while venting(!)[venting is leaving the tube open so if she needs to burp it can come out the tube instead of getting stuck in her tummy]

Once she's doing really well on real foods, we can take out the g-tube and let it heal over. That's still a long way off....but maybe not as long as we'd thought :)

Seraph is thinking about eating....

She got her G-tube button today (a more compact g-tube with easier maintainance).

Then she passed her swallow study! She still can't drink really thin liquids - like baby formula. She can drink nectar, eat baby-food bananas and applesauce, and drink thickened formula. I'm excited to see what direction her speech therapist takes her (starting tomorrow!).

For the swallow study, they squirt food into her mouth that has barium mixed in. Then they watch her xray as she swallows or aspirates it. Her favorite was the unflavored barium. This was her favorite part of the day. She perked up and you could tell she wants to use her mouth for eating.

Good job, lil girlie :)

Happy Birthday, Angel

Angel (age 1):

wt: 20#7oz

ht:28.8"

Favorite toy: her daddy

binky: nope - prefers her baba (bottle)

favorite word: mamamamamamamamamamamamamama (This is how she gets me out of bed in the mornings.)

Angel loves to sing in the morning. She recently started saying "NO", but doesn't know what it means yet. Doc said she's going to start having temper tantrums - ack!

She walks! Her motto in life could be "me too"! She wants to go every where Strong Bear & Delightful Finch go; wants to do everything they do. She rides their trikes, she climbed Finch's chair so often we had to buy Finch an Angel-proof chair! She loves her grandpa...and knows just how to get him (and others) to pick her up.

This year has passed by so quickly for Angel. She is eating real food--but not enough teeth to mash it up herself. She has 5 teeth on bottom and 4 on top.

Favorite food: Strawberry. She clutches her strawberry so tight she has trouble grabbing a new one when the old one is just a tiny red spot in her hand.

She weighed 4#13oz at birth. She was in the NICU for 10 days and came home withOUT oxygen or her NG tube. Her brother and sisters have loved her to pieces from day 1.

She asks for a bottle when she's sleepy. ...and can sleep anywhere. She usually wakes up happy. Sometimes I'm sure she thinks she just blinked when really it was a 4 hour nap.
She loves her Seraph sister. She likes to help her get rid of those silly cords. She also likes to show her how to play with toys. Angel always has smiles for Seraph.

Happy Birthday, Seraph

Seraph (age 1):

wt:19#8oz

ht:27.2"

Favorite toy: oxygen cannula (she likes to chew on the cord)

She loves playing Peek-a-boo. (esp the one where you throw a small blanket on her head and then say "peek-a-boo" once she pulls it off). She also loves her teeth. She has this amazing little smile that shows off all her teeth. She has atleast 6 teeth on top (2 more top molars about to pop through) and 8 teeth on bottom.

She rolls to her sides, and sits up well for short periods of time. She's happy to be rid of her NJ tube!! She doesn't think she needs her oxygen or monitors anymore - she's always pulling them off. She knows to cry at doctor's offices before they even look at her.

She's had 2 open heart surgeries and 2 other surgeries. She's a strong little girl who knows what she wants and isn't afraid to tell doctors off....or pee on them when they deserve it :P

At birth, she weighted 4#8oz. She's always been a very social baby. I can't believe how much she's been through this year. I'm just happy to have her home. She's amazing.

One more picture with her NJ tube (which she had for soooooo much of this past year.)

She really loves her hands, too. Sometimes she just stares at them and watches how they work. She loves her Angel sister...but sometimes Angel is a little too hyper for her. Sometimes Seraph gets anxious when Angel is too close. Other times, she grabs Angel's hand or nose or face and watches her intently.

So happy to have these 2 as part of our family :)

After the rain....

Took the family to the park today. Seraph was chewing on her oxygen tube so much today, I finally just took it off. She's still on an oxygen monitor. Her oxygen levels and heart rate have been in a good range for the past 4 hours. I'll put the oxygen back on if she gets tired of breathing by herself. (It's back on now at 1/8 liter)

Angel ate sand. yuck!

Delightful Finch made friends with the highschool kids. They kept lifting her up for drinks at the drinking fountain....and then she just kinda hung out with them. I guess they were cooler than us :p

Bear and Rabbit played games and spun themselves silly. Haqon and I and Faerie Princess each tried the spinning toys (if only briefly).

Seraph at the Park

Turn your sound on - she makes cute baby noises :)

My Baby Girlie

Seraph is amazing. I thought she'd be weaker after her surgery. Instead, she's stronger and happier. The biggest problem we've had is that she likes to chew on her oxygen tube or pull it off completely right before falling asleep.

We're soooo happy :) It's wonderful to have her home.

Now that she doesn't need all the reflux meds, she only gets meds about half as often as before. I feel like I'm on vacation! She sleeps 6-8 hours at night. !!!

I can't wait to start up her physical therapy and speech therapy. I'm excited to see what she can do.

Seraph is coming home Tonight!!

Baby Angel and her Grandpa waiting for miss Seraph to come home :)

Seraph is such a happy little girl. I can't wait til you can all meet her :)

Look at the mouth full of teeth!! She has 2 molars on their way in, too. And she's still a happy girl! (OK, the tylenol helps) She also loves to suck on washcloths.

She loves playing with her toys, too. One of the nurses said she's the most self-entertained baby she's ever watched. That's my girlie!

Monday at the Beach

Strong Bear and his cousin, Butterfly, playing at the skate park. The skate park is on the way to the sand park which is on the way to the beach. It takes ages to walk to the beach with all those parks in the way!!

Beautiful Rabbit didn't bring a swimsuit, but that didn't slow her down at all! Several of our neighbors were already at the beach with their girls. The girls covered each other in sand and then rinsed it off...again and again

Delightful Finch charmed her way into a treasure of chips and water (from our sweet neighbors). She spent an hour walking around offering chips to everyone on the beach. (or maybe she was just showing everyone her loot...it's hard to tell).

Here's my sil with one of her twins. I think it's the Professor. He wasn't in the mood to get wet.

His brother, Pirate, was all about splashing! He and Angel made friends with another little girl their age. We hung out on the waterline and tried not to eat too much sand.

Watermelon and the sand park on the way back! Sadly, our cousins had to go back home yesterday. They live back East. They were here for a whole month and didn't get to see baby Seraph - who's coming home today. I can't believe we didn't get to see all the twins together....of all the luck!!

Out of the ICU

Seraph graduated from the PICU today. They want to watch her for 5-7 days in the step-down unit. They are weaning her anti-anxiety medicine and want to make sure she's OK with the wean before they send her home.

I changed the bandage at her g-tube site. It was pretty simple. So, I'm all ready to bring her home now :)

Good News, Seraph :)

Seraph hangs out on a huge floor mat in the PICU. She's surrounded by toys. She LOVES this toy a ton!! (We might have to get her one..heh) She's rolling onto her sides, reaching for things, sitting up in chairs, smiling tons....

Good News:

--Seraph is on 1/2 liter oxygen (that's less than what she'd been on at home.)

--She took a super long nap today (great because she hasn't been sleeping for more than a few hours at a time)

They're keeping her in the PICU for now. They need to make sure she can tolerate being off the high flow oxygen.

She LOVED playing with her papa. He's just so fun!! Strong Bear came with us today. He wanted to see Seraph. He played with her toys and talked to her a lot. (Later, he threw pennies in the fountain and played on the rocks while daddy brought the car around.)

Look at all those teeth!! Seraph has 2 molar teeth coming in on bottom. She loves her teeth soooo much. She's always touching them or biting toys.

We finally wore Seraph out and she fell asleep in my arms. She never lets me cradle her like this. I hold her on my shoulder alot or in my lap (facing away from me). It was wonderful to snuggle and watch her slow blinks as she drifted off.

Thank you for all your prayers. Seraph really seemed like herself today....and it was wonderful! Can't wait to have her home :)

Short for Summer!!

Beautiful Rabbit went short for Summer. I love it!! She's been building rivers in the lot next to us. Armed with 2 new shovels and a hoe, she built quite a river before her shoulders got sunburnt. Now we're keeping her in aloe vera to while her skin heals.

Seraph - a little better today

They're weaning her high flow oxygen down to 4 liters today. She's off all the sedative and muscle relaxant drips. Yesterday when we visited, she was agitated when she first woke up, but then fell asleep in Beautiful Rabbit's arms. After a very long nap, she woke up ready to play :)

Her wonderful nurse today plans to break out the floor mats and play with her down on the floor today. (Daddy always stresses the importance of letting Seraph experience multiple positions in a day. So, he's pretty happy with this plan.)

She is off Lovenox! Yay! No more shots!! and Mom and Dad won't have to give her shots at home - double yay!!

Off bi pap!

Seraph is off bi pap and on the high flow oxygen. She's on 8 liters high flow now. Once she's weaned down to 2 liters they'll mover her out of the ICU. Then once she's weaned down to 1 liter oxygen she can come home :)

Good job, girlie. No pictures yet - maybe once daddy gets home.