Surgery Date Set for Seraph's Next Open Heart Surgery: August 30th

Angel & Seraph 11 days old
(minutes before Seraph's first open heart surgery)

Beautiful Rabbit (8yrs) holding Seraph & Angel 
the day we brought Seraph home from the 
hospital the first time (1 month old)

Angel & Seraph the night before Seraph's second
open heart surgery (4 months old)

Delightful Finch, Seraph, & Angel 2 months *before*
Seraph's third open heart surgery (3 years old)

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 Seraph's (Fontan) open heart surgery is scheduled for August 30th. We're planning on requesting a day of prayer and fasting for her to be held on the first Sunday in August. More details on that and the surgery later.

This should be her last surgery for 15+ years if all goes well.

Please keep her in your thoughts and prayers.

A Very Happy Echo

Seraph had a sedated echo cardiogram this week.  It's like an ultrasound on her heart.  They sedated her so she'd lay still long enough for them to get a good look at everything.

Seraph didn't mind being up at 6am.  I had to be up late to do her midnight feeding and then switch to pedialyte at 2am.  I was really tired.  Thank heavens Daddy was driving! Seraph loves driving.  She mostly watches out the window and kicks her feet.

Seraph liked the toys outside of xray.  She hated xray.  They make her sit still and mommy leaves!! I like to stand back by the computers so I can take a peek at her xray as it pops up on the screen.  Her xrays looked fantastic this time :)  yay!

 There was a computer in the examination room!  Seraph couldn't quite reach the keyboard...but some nice person had left the mouse on the floor for her to play with.

There was a LOT of waiting....and Daddy got lots of work done on his phone.  Thankfully, I had the iPad along to keep Seraph busy.  (I brought it to read a book while she was sedated, but once she saw it, she demanded her app-play time!)

 The nurse practitioner and the cardiologist were super smart - no lab coat today so Seraph had no negative reaction to them even when they listened to her heart and lungs. Seraph was congested from allergies, but they felt she was OK to be sedated.

 Seraph was very happy and very social...until the IV-team started putting on gloves. It was a HUGE warning signal for her. She cried immediately and looked around for a way to escape.  I used to offer to help hold her still.....but I just can't do it anymore. I figure she needs big hugs when they're done and that's my job.

 We almost left her favorite puppy under the chair, but the NP saw it.  I would've had to buy her a new one.  She loves her puppy that much!

 After the IV...we moved to the echo room.  I held her on my lap while they started sedating her.
Seraph was almost a year old before she decided to allow me to give her comfort via hugs and touching.  Before that she would just shove everyone away.  Now she wants me to hold her and give her love.  I never knew it was something to be grateful for....but I am ever so grateful she let me hold, comfort, and sooth her as the meds started kicking in. :) She is one tough cookie!

Recovery time was fast.  We had our chat with the cardiologist.  It was all good. Her heart function/xrays/valves...everything looks good.  We've set up a heart Cath in August.  Cardiologist is optimist about her next open heart surgery...and feels we'll be able to do it in August.
He also cut back on several of her meds.
It was crazy talking to him....because this was the first time that it was all good news. I feel better about her upcoming surgery.  I think she'll do well.

Here's a picture of Seraph the day after her echo:

They told me she would be cranky....boy were they right!  but she was also happy to be home.

Good Report from Cardiology

Seraph visited her cardiologist today.  She was wary, but playful.  The x-ray was traumatic:  2 gals holding her against the wall while her mommy walked away. :( Everything else went well.  Cardiology wants to see her every 3 months.  She had labs (they might tweak her meds).  Overall the Doc was impressed. He even mentioned the possibility of Seraph being able to have the 3rd heart surgery (Fontan) if her pressures go down.  He's a pretty pessimistic guy, so him acknowledging that hope was huge for me :)

We also found out her cardiologist is also working from the clinic at the new hospital that's only 5 minutes from my house.  They'll be able to do all her future visits and tests there....except for heart caths and sedated echoes.  I'm thrilled!

My emotions have been all crazy lately.  Here's a picture of Seraph last year on Christmas Eve in the PICU:

Last year, after spending ThanksGiving, Christmas, and New Year's in the PICU, she came home on hospice care.  They didn't think she'd live to see her first birthday (in June).  My sweet little girl decided to stay with us.  She's a fighter and God has blessed us to keep her with us for now.  I'm holding my breath, but I really think she'll be home for Christmas this year.  Yay!

She has changed so much since last Christmas.  She's army crawling; sitting by herself; doing baby talk.  She's invented her own sign language to communicate:  "I like..", "I'm happy", and "that's bugging me".

At the end of her appointment today, she wouldn't let me put her down without screaming.  I pushed her stroller out to the car.  As soon as she saw our car, she made her sign for "I like.."  All her tears stopped.  She smiled and giggled and played all the way home.  I think she must've been scared that I'd leave her at the hospital.  I was just as happy to be bringing her home.  Love you, lil girl :)

Thank you for all your prayers and support - and Merry Christmas to you and yours :)

Fasting for Baby Seraph

Please join us in fasting for Baby Seraph this Sunday (May 3rd 2009).

Seraph's heart has several defects.  She needs another open-heart surgery, the Fontan (this link explains all 3 heart surgeries, the fontan is the last one).  Last January, the cardiology team decided she is NOT a candidate for this 3rd heart surgery.  Her pulmonary veins are too small.  Pulmonary veins don't grow bigger.  They also decided she's not a candidate for some intestinal surgeries she needs. They didn't expect her to live this long.

The pulmonary veins are actually in her lungs.  In the picture, the pulmonary

 veins are the RED tree-branch-looking veins in the lungs.  The pulmonary veins bring oxygen-rich blood back to the heart.

See how the veins are bigger the closer they get to what would be the "trunk" of a tree?

Seraph has 3 pulmonary veins on her right side.  One of those is fine.  Another is probably OK.  The third is too small.  Picture a long, narrow tree trunk that doesn't have many smaller limbs branching off it.

That's fine for a tree, but Seraph's blood flows through these branches.  If the branch is too narrow, the blood can't flow through fast enough.  (The pulmonary veins on her left side are fine.)

The Fontan surgery will double the volume of blood that has to flow through those veins.

Seraph's body is slowly outgrowing her heart's ability to pump enough oxygen to it.  She'll need the Fontan to survive.

May 8th, Seraph will have an echocardiogram--a high res ultrasound on her heart.  They'll be looking specifically at her blood flow and her pulmonary veins. We're praying that her doctors will find something to reverse their decision and allow her to have the Fontan procedure.  This will put her back on their list of "treatable" patients.  We're also hoping they decide she's well enough to have the intestinal surgeries to ease her GERD (really bad reflux).

Baby Seraph has thrived at home.  Despite catching 2 colds, she's done so well.  She went from constant pain to rolling onto her tummy (thus her scar) on purpose! She's gained weight and started physical therapy.  She has 3 new teeth :)  She scoots and wiggles and rolls as far as her cords will let her.

She loves being with her family and especially with her twin sister, Baby Angel.  They are very close.  They shared the same sac in utero.  It's a miracle that their cords didn't knot and twist each other off before they were born.

Baby Seraph needs (another) miracle.  We want her to grow up with her twin sister...and have a long & happy life.  Thank you for fasting with us. Please keep Seraph in your thoughts and prayers.  

I hope to have good news for you soon :)

Please Pray for Seraph...

Seraph is having another test this week - an MRI on her heart.

The cardiologists are worried about the blood vessel that returns the blood from the lungs to the heart.  They think it might be too small.  Think of a garden hose.  You know how the water spurts out faster when you cover the end part way with your finger?  It's like that.

They aren't positive that it's too small, but they're very concerned about it.  After the MRI they'll know more.  They'll know if she can be sent home and wait for it to grow.  OR They'll know if she needs to have another open heart surgery to widen the vessel BEFORE she can come home.(!!!!)

We want what's best for her....but we're so tired of having her gone.  We're really hoping that it'll be something she can grow out of on her own.  It's really critical because that same blood vessel will have to carry even more blood after her next heart surgery (the  Fontan).  And we don't want too much pressure in her heart.

Please pray for her and for her cardiologists.  The MRI will be scheduled for sometime this week.

thanks.

oh, they're pretty sure she does NOT have an infection.  Her symptoms were from trying to wean her off some of her anti-anxiety drugs too quickly.  They've slowed down the weaning process and she seems to be doing better.  She should be weaned off those drugs in 3-4 weeks. (Unless she has another surgery.)

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.