Seraph Songs

Seraph likes the ABC's song, and Ten Little Indians (with her name replacing "indians"). She also likes the jungle night sounds on her swing.

We visited her last night at the hospital. It was wonderful to hold her again. She was crying when they put her in my arms. I knew all the right mommy tricks and she calmed right down and fell asleep. I kept waking her up cuz I wanted to see her hands/feet/legs. She kept peeking to see if I was grabbing her hand to poke her (to draw blood or place an IV or something.) Haqon finally had to send Beautiful Rabbit in from the waiting room to tell me that my turn was over. I could've stayed all night :)

Seraph weighs 7lbs 6 oz :) She's getting to be such a big girl! She's on 2.5 liters O2 at 30%. Her goal is .5 liters O2. Then she can come home - yay :)

Spilt Milk

Delightful Finch and Strong Bear decided to distract me from my woes today. They did an excellent job! I didn't think about missing Seraph all morning.

I came downstairs after taking care of baby Angel for an hour. (Bear and Finch were with me..."helping" *almost* the whole time.) On the last step was a jug of milk. I flipped. "No food out of the kitchen!!!" Thank heavens the milk jug was all but empty. I can't even imagine trying to clean a gallon of milk out of the carpet.

ooops. There was a river of milk on the kitchen floor. Worse, it'd had about an hour to seep under the kitchen cabinets.

Sigh.

Ya know that Brawny commercial where the dad and son are arguing over how many Brawny paper towels it's going to take to clean up the cup of rootbeer that spilled? It's getting closer and closer to the carpet and finally Mom comes over with a huge smile on her face and says, "Nope, just one!" Yeah right. Why don't they clean up their own mess if it's so easy.

Do you know how many Brawny paper towels it takes to clean up a gallon of spilt milk? More importantly, do you know how to clean up milk that had an hour to seep under the cabinets?

Need more Prayers, please

We've started giving Angel toys to distract her. I think I miss Seraph more than she does, but ya never know. Today Seraph's nurse held the phone up to her so I could chat with her. She cried a bit. (I think he took away her binky so I could hear her.)

Seraph is still on high flow oxygen. Her cold is almost gone. Someone suggested that her energy is just drained from fighting off the cold - she's tired. Please pray for her - that she'll be able to breath on her own again and come home.

.....and wash your hands ;)

First Day of School

Hurry, Rabbit, don't be late!!!



Beautiful Rabbit quickly found her best friend. They found out they're in the same class together - along with some other friends from last year. What luck! Yay!

Twins x 2

Angel and Seraph met their twin cousins Thursday. I'm holding Pirate and Professor while Safire is holding Seraph and Angel. The boys were heavy!! ...around 13lbs each compared to my girls who're just under 7lbs each.

All my kids kept giving Pirate and Professor kisses. Delightful Finch especially LOVED having 2 more babies smaller than her. Rabbit and Butterfly loved playing together. They were all over the house!



Picture: Butterfly being held by Flower, Delightful Finch, Strong Bear, Beautiful Rabbit, Pirate, Professor, Angel, Seraph.

We kept offering to let someone hold all 4 babies and pretend they had quads....but no one really wanted to.

It turns out, Safire is about as sleep deprived as me! It was a nice visit - I'm sure we'll be seeing the boy twins again :)

Seraph in the Hospital

Friday Seraph had a temperature of 102.4. Thanks to some wonderful neighbors who watched my other kids, I took her to the pediatrician's office where her fever was up to 104, her heart rate was up to 212, and her O2 level was down to the mid 40's. They called an ambulance and rushed Seraph back to the children's hospital.

In the ER, they gave her a dose of Tylenol rectally (I didn't even know they could do it like that!). Seraph tolerated it, but when they tried to stick a catheter in for a urine sample, she pooped and peed all over both nurses! (You should've seen the look of horror on her face!) I told her "good job, honey" and let her know she could pee on anyone who tried to stick something up there. Unfortunately, they had to give her another half dose of Tylenol cuz she hadn't had time to absorb it all.

She was admitted to the hospital on 7 liters of O2.

Today she's down to 4 liters of O2 and they've started feeding her formula again. Once she's down to 1/2 liter O2 again, she'll be able to come home. Her fever went down Saturday and never came up. They've run all sorts of tests to see if it's something more serious than just a cold...but so far they've all come back negative.

I miss her terribly, but she's going to be OK.

You'll understand if we're strict about asking you to thoroughly wash your hands when you come over and to postpone your visit if there's even a chance you might be sick. Thanks.

On a Sunday Afternoon...

Angel and Seraph napping. They've both caught a cold - so they have runny noses and can't always breath nicely. The evil bulb of tears helps clear up the snot, but they don't like it much.







Rabbit, Finch, and Bear sitting on their "thrones" wearing their "crowns".

I finally tried getting them to sleep in the same crib. They both seemed pretty happy about it. ...Even when they were kicking each other. Angel definitely slept longer. Seraph slept about the same - her hungry tummy woke her up.




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Strong Bear: Look, Mom! I holding baby Angel!
Mom:!!!!!!!!!!!!!

He was carrying her across the tile floor. He was holding her a bit sideways, so it looked like she was falling, but she wasn't. He'd pulled my chair over to the crib and climbed up to get her out. I don't even want to think about how he got off the chair with her. Thank heavens he didn't drop her. We had a talk about never carrying babies. I hope it stuck.

...her better known poem:

First Fig

My candle burns at both ends;

It will not last the night;

But ah, my foes, and oh, my friends--

It gives a lovely light!

--Edna St. Vincent Millay

Awwwww....

There's a new pool near my house. Fairee Princess took Strong Bear and Beautiful Rabbit swimming today. (Delightful Finch was napping.)

When they came home, Seraph and Angel were just settling down for a nap. The kids liked seeing their babies together :)

Seraph's Heart

Seraph was born with an unbalanced Atrioventricular Septal Defect (AVSD)(aka CAVC - complete atrioventricular canal defect) with hypoplasia of the right ventricle. Also, her heart is mirrored - so she has a left-sided right atrium and a right-sided left atrium, etc..

Stay with me - it's not as hard as it sounds.
"Atrio" - from atria which are the upper chambers of the heart
"ventricular" - from ventricles which are the lower chambers of the heart
"Septal" - from septum which are the dividing walls or the heart

"hypoplasia of the right ventricle" - meaning her right ventricle is unusually small compared to the rest of her heart.



Here's a normal heart:













The blue blood goes out (thru the pulmonary artery) to the lungs where it picks up oxygen.


Here's a heart with AVSD (Atrioventricular Septal Devect) aka CAVC (complete atrioventricular canal defect):





















Remember: Seraph's heart is flipped. So her heart is a mirror image of these pictures. Also, her right ventricle is too small compared to the rest of her heart.



Seraph's first surgery - the Norwood Procedure (11 days old) (not shown in picture - hole between the two ventricles)

a--improve the flow of red blood (oxygenated blood) around the body by attaching the base (Trunk) of the lung artery (Pulmonary Artery) to the body artery (Aorta).

b--provide a blood flow to the lungs through a passage (Shunt), creating a link between the lung artery (Pulmonary Artery) and the body artery (Aorta). The passage is made out of soft plastic (Gore-Tex).

c--I don't think they had to enlarge the atrial septal defect, but I'm not positive.


Seraph's second surgery - Cavo Pulminary Connection (4-6 months old)(not shown in picture - hole between the two ventricles)

--redirect the flow of blue blood (deoxygenated blood) to the lungs by attaching the upper body vein (Superior Vena Cava) directly on to the lung artery (Pulmonary Artery).

The Gore-Tex shunt that was inserted at the last operation will be taken away.








Seraph's third surgery - Fontan Procedure (2-5 years old)(not shown in picture - hole between the two ventricles)
--aims to separate the blue (deoxygenated) blood supply and the red (oxygenated) blood supply

--create a wall (baffle) in the right collecting chamber (Right Atrium) and then attach the chamber to the base of the lung artery (Pulmonary Artery)

All the returning blue (deoxygenated) blood will now be flowing to the lungs, without a pump behind it. This causes an increase in pressure within the lung blood vessels, so, to aid circulation, a small hole (fenestration) may be created in the wall (baffle). This acts as a pressure release valve whilst the child’s body adjusts to their new circulation.


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They monitor the oxygen levels in her blood--when it's too low they know it's time for the next surgery. She'll end up with just one ventricle pumping oxygen-rich blood to her body. Her deoxygenated blood will flow to her lungs without a pump.

She may need a heart transplant in her 20's.

Delightful Finch

Delightful Finch likes to go to the bottom of the stairs and yell, "Raaaaabit, [where] are you?" She yells Beautiful Rabbit's name over and over again - even if she's looking right at Rabbit.

Finch has a "rash" on her tummy that's actually a carpet burn from sliding down the stairs on her tummy (feet first). As she slides she says, "Weeeeeee!" and then at the bottom she rolls over a couple times (faking momentum) and says, "Woah, woah, woah!"

If you come to my house and leave your shoes by the door, they may just walk off. Finch loves trying on other people's shoes and walking around in them.....and when she wants to go outside, she'll bring you her own shoes and say "shoes shoes shoes" over and over until you put them on her.

No Man Can Serve Two Masters Dinner...

..because they'll both get fussy and start kicking each other. They'll each have less than zero patience. Then when you finally get both of them happily eating, one will mess her diaper...and you'll find yourself wishing you were a hindu deity (ya know - the one with 6 hands). So you'll listen to one scream while the other eyes you suspiciously. Finally you'll give in and change the diaper while they both scream. By the time you're done they'll both be fed, but neither will fall asleep because they'll be too worked up. So you'll go back and forth between the two, rocking/burping/inserting binkies....and then you'll get a sudden craving for a turkey sandwhich (and you'll be grateful that your mom left a jar of turkey meat in your fridge). and then you'll find yourself online...blogging instead of trying to squeeze in an hour of sleep cuz you can type while you're chewing your food...and you'll decide you must be crazy...but atleast you won't be hearing non-existant music like the previous night....*ahem*...and then you'll look down and realize that you just gobbled up a whole pack of red vines...or maybe the music faeries stole them. yeah. that's it.

so anyway...just don't even try it. ummm...amen.

Happy Birthday (kinda)

If they'd been full term, Angel and Seraph would've been born today :)

They both weigh 5 lbs 11 oz. This is good news for Angel, who's finally gaining weight and bad news for Seraph, who's only gained 50 grams since she left the hospital a week ago. Seraph has another weight check tomorrow.

Picture: Fairee Princess & Angel

Sweet Fairee Princess (left) and Angel (right). Fairee Princess is Angel's cousin. She's my sweet niece who's been coming to help me with my kids so I can live through feeding twins every 3 hours. My kids adore her. Last week (when Seraph came home from the hospital) she went camping. We missed her tons!

Glad you're back, and thanks for all your help :)

Strong Bear

Strong Bear: Can I hold the baby?
Me: Ok. Sit down
Strong Bear: Look, Baby Angel has flowers.


--------------------Earlier that Morning---------------
Strong Bear: If you get me wet again, I'm going to knock you down!
(He was scolding a pickle)

Family Time

We took the family for a walk today. It was overcast, but never managed to rain. The twins seemed to like the fresh air. The other kids seemed to like the freedom of being outdoors.

Sexy Haqon took over Seraph's feeding schedule this morning so I could catch some sleep. It was heavenly :) The twins are both doing well. They eat all the time~er..every 3 hours, which doesn't leave much time for mom to sleep!

Lil Bunny Foofoo

After many happy years and wonderful memories, Bunny has hopped on to heaven. She'll be missed. We love her.